2/20/13--Wednesday--Day 130--Life Continues Without Focusing on Cancer
The countdown continues as last week I survived chemo #3 and tomorrow I face chemo #4. Last week we made the trip on Valentines' Day. Before arriving at our 10 AM scheduled time, we stopped by Krispy Kreme donuts to get some treats for our friends at the Cancer Center. Our first stop is always at the first floor lab. The two friendly receptionists greeted me with a smile, as always, and were eager to hear how the Pretty in Pink party went. They were complimentary of my new head attire and reassuring that shaving my hair before my hair fell out was the right thing to do. They were also glad to be the first stop on my appointment list as the Krispy Kreme donuts were still warm :)
Accessing my port was again pain-free, thanks to the Lidocaine creme we put on an hour before arriving. In the past, they also have sprayed a freeze spray before accessing it, but this time they informed me they stopped using the spray because the previous day a study was released that suggested the spray may cause tissue damage. It's reassuring to see MD Anderson react so immediately to new medical information. I'm not sure the freeze spray did much for me after the cream, but I'm sure the patience who didn't have the creme missed it.
After supplying the lab crew with donuts, we headed to the Infusion Center on the 3rd floor to wait for labs and be called back to start the chemo. While waiting, I snuck back down to the 2nd floor to leave donuts for our friends in the doctors' offices. During chemo, I only see the doctors every four weeks unless there is a problem with my labs, so we don't see the people we've been so used to seeing regularly. I gave donuts to the receptionists and left more for our two favorite nurses, Tia and Betsy, along with all of the doctors and assistants.
Back up on the 3rd floor, we finished handing out donuts to the receptionists as well as the nurses once we were called back. I was super excited to have Cheryl as my nurse, once again. Each time so far, Cheryl has secured a window seat for me and we've just established a great repport. During chemo, Tia and Betsy came to find me to thank me for the donuts. It was really nice to see them. The infusion went flawlessly again. Going slow is definitely the key. I had my typical tomato soup and sandwich lunch served from the volunteers there while Greg packed a peanut butter and jelly sandwich and was super happy with his comfy chair he brings. It's almost to the point of being routine now, so that's good.
Shortly after 3PM we were finished and ready to leave. I made a quick stop on the 2nd floor at the Boutique of Hope shop where I purchased a few more caps to go with my outfits. It has continued to be a huge challenge to coordinate outfits with head ware, but I'm starting to get a decent collection that's interchangeable.
With my hair gone, we brought the wig and headed to the wig shop to get it fit and trimmed. Unfortunately, the wig shop was very busy, even though we had called ahead. By the time we were finished, the wig looked great, very close to my real hair, but we had been there more than two hours and I was starting to fade. As we travel this cancer road, we continue to learn more and more about my limits. We had three more stops to make, but I knew I was starting to feel the fatigue so I stayed in the car. By Globe, however, I was nauseated and not feeling well at all. That was the first time I've had to take a nausea pill since I've started chemo. The rest of the trip was uncomfortable as, for the first time, my legs were tingly and numb. Greg reminded me that we were usually home by that time. Lesson #1 for this week--we are definitely limited on how long we can stay after chemo.
After sleeping, I was fine on Friday and went to work with no problems. Saturday was relaxing and the weather was finally warm enough to start walking again. We've been trying to walk to build up my endurance in hopes of helping me tolerate chemo better. We have a few routes around the cotton fields mapped out and our normal walk is 1.75 miles and takes about 40 minutes. It was a nice walk and Saturday ended with no issues.
Lesson #2, however, came on Sunday. After waking up and having breakfast, we decided to go on a new route for our walk. Big mistake. Half way through the venture, I was beat. I laid down on a bench trying to recover. After resting for a bit, we continued on, but within minutes, my feet were dragging, I was crying, and the fatigue was severe. Greg wanted to call someone to pick us up, but I refused. I was sad, mad, frustrated and determined. Step after step, many with my eyes closed and some with tears, we finally made our way home after an hour and 15 minutes. When we got home, I immediately went upstairs and went to bed. I slept until evening and felt just awful once I got up. Monday morning, however, I was fine, once again. Monday I wanted to walk that same route to see if it was just too long of a walk, or if it was because of the fatigue that seems to hit on Sundays. So Monday after work we walked the same route, this time it only took us forty minutes and we had no issues. So that was it--Lesson #2--Sundays are my bad days. For three weeks in a row now I have had bad Sundays. Now we will at least be able to plan knowing what to expect on Sundays.
Monday night, I finally finished writing what seemed like a million thank you notes. Please forgive me if I missed you. There have been people who have brought gifts, brought meals, and helped in many ways that I may not have written down, so please accept this public thank you if I missed sending you a note. I truly do appreciate all of the support I've received.
As I was writing Monday night, I reached up to rub my head and notice, for the first time, hair falling out. I didn't know what to feel. Was I glad because if I had shaved my hair and it never fell out, I would be totally discouraged? Or was I sad because this was truly the reality of going bald? I guess I felt a little of both. I was relieved that yes, my hair was going to fall out, so shaving was a good thing. I was scared because it was another sign of reality that I really do have cancer and crazy things are going on with my body. But, in the big picture, it was just another point on the journey. By Tuesday morning in the shower, it was definitely confirmed that my hair was falling out. Now I just wondered how long it was going to take. At this point, it's sort of like a cat shedding--it doesn't fall out unless you rub it or touch it. All I know is I couldn't be happier that I shaved it short. I can't imagine the heart-break I would be feeling right now if it were long strands of hair coming out every time I touched it or brushed it.
So that's the lastest. I'm learning how to better manage chemo, I'm figuring out my wardrobe with coordinating caps and scarfs, and I'm trying to eat and exercise to stay as fit as possible to help me through this long journey. Thank goodness recovery from the surgeries seems to be pretty much complete. My six week checkup is next week, but I feel fully recovered from the hysterectomy. My right hand fingers are still numb and I still have no feeling under my right arm, but that could take months to return to normal. Even my scars are healing and starting to disappear. Though they say each week the effects of the chemo may increase and right now I'm learning a lot, life still continues without focusing on cancer.
Wednesday, February 20, 2013
Tuesday, February 12, 2013
(Revised) Chemo #2 and Pretty In Pink Party Both HUGE Successes.........
2/11/13--Monday--Day 121--My Beauty Will Come From Inside Out.
Raw video footage is now uploaded at www.lindseyfamily.com/cancer This includes Brooklyn's video, the blue mohawk video, the slide show of Susan Support Team photos and all three live streaming videos. We will be working on creating the editied Pretty in Pink video for a little while.
Also, I totally forgot to blog about the balloon release on Sunday and it's a story that must be told. If you've already read the blog, skip to the Sunday morning paragraph for the update.
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So much has happened since my last post--my second chemo, the Pretty in Pink party, my new bald appearance. I'll start with chemo #2 from last Thursday.
We first went to the lab where they accessed my port and did the blood work. While waiting for the lab results, we stopped in the Bouquet of Hope to look at scarfs. I picked out a few head caps but still have a bunch to figure out about using a scarf. The caps looked great with my hair but I wasn't too excited at the thought of them with no hair. While in the shop, I ran into a woman who had lymphedema. While I only saw her hand, wrist and part way up her forearm, I was completely shocked. Her arm was so severely swollen it literally wrinkled over her hand at the wrist. She was there looking for a compression sleeve to try to help. She said she thought the lymphedema had become much worse from the airplane ride over. It truly scared me and made me realize how quickly lymphedema could happen and how awful it could be. She had never seen Leona, the lymphedema specialist, and didn't know anything about lymphatic massage so I suggested she look into making an appointment. After that, now more than ever, I'm committed to following Leona's suggestions to helps me avoid lymphedema.
When we ventured up to the 3rd floor and went back to the chemo area, I was given to Cheryl, my nurse from last week. She said she saw me on the schedule and requested me. That made me feel good and was really nice because she was familiar with the bad reaction I had had last week and knew the plan we had set to slow things down. We started with the Dexamethasone, the steroid to prevent reactions. That is given in an IV drip for 15 minutes. This time, instead of then shooting in the Benadryl and Pepcid all at once, we did another 15 minute IV drip with those two drugs. That was immediately better. No dizziness, minimal reaction, and no suddenly feeling drunk. This was good. After that finished, we only had to wait 15 minutes before starting the Taxol (chemo) because the 30 minute wait is between the Dexamethasone and the chemo. The chemo I receive, Taxol, is supposed to take just about an hour to infuse. Cheryl slowed it way down causing it to take about 2.5 hours. But once again, it was great. I had no sleepy reaction, no numbing, very little reaction at all. In fact, Greg had planned to pick up our car that was getting some work done once I "conked out" and be back before I woke, but I never really even felt sleepy. The only bad part of the whole experience is that the whole process from lab to finish now takes 5 hours instead of 3, but it was so worth it. So that was it. We started at 10:30 AM and were leaving by 3:30 PM heading home with me relaxed, but not knocked out or hallucinating.
Thursday night our friends Mike and Suzie from Albuquerque came and Friday morning my dad, Preston and Yuri came to help us prepare for the Pretty in Pink party Saturday. I relaxed most of the day Friday in between doing small tasks trying to make sure I was well rested for the busy Saturday. With everyone's help, the house was cleaned, some additional food was prepared, beds were made for some of our out-of-town company coming, and we even make 50 plus Kisses of Hope goodie bags to give out to those who came to the party.
The real fun started Saturday as the house filled with people who had worked hard to make this Pretty in Pink Party perfect. Greg was amazing directing our family and friends in all of the necessary tasks to get things ready for a houseful of people. Carol Elders and Stephanie Saldana came at 9 AM with all the wonderful decorations and goodies. They had worked hard planning everything. With the help of Yuri, they transformed the house into a pink palace of inspiration and support. Our friends Paul and Diane came from Phoenix and immediately jumped in helping with food and setup. Friends from Tucson, John, Jennifer, Michelle and her kiddos came bringing a huge tub of Egees! Suzie, my Albuquerque friend and personal hair dresser, trained and prepared the Pink Out crew--Mike painted pink ribbon glitter tattoos, Rebecca Richins, Cheyanne Allred and Yuri learned to tie pink bling in hair and chalk hair, and helped with decorating nails.
Many who couldn't make it that afternoon for the party came earlier in the day to show support. Natalie Reynolds from the middle school came and gave me an amazing poster the middle school had printed of the wonderful support photos from the school's Pink Out day. She also presented me with a beautiful quilt made by Denise Crocket. What an amazing gift. A knock on the door brought bags and bags of balloons sent from Sandra Griffith Carpenter, one of my former newspaper editors, along with a note that brought me to tears. My dad brought me a bouquet of pink carnations, my mom's favorite flowers, and Randall, my father-in-law, brought beautiful pink roses. One of the most special gifts of the day was having Vikki "Mouse" (Vikki Colvin McIntyre) come from Tempe to photograph the special event. Vikki has been a part of our lives for more than 20 years since she was in high school and was one of my newspaper editors. She is an amazing photographer now and to have her photograph this moment in my journey was heart-touching. The scene was truly set for an amazing evening.
By afternoon the house started to swarm with people as 4 PM came and went. Even a friend from high school, Les Duncan, came from Phoenix to surprise me. Wonderful friends continued to flow in, some whom I haven't seen in years. Though I tried to stay seated as much as possible, every few moments brought new waves of more wonderful friends who came to stand by my side and support me.
Just before the party started, Greg set up a live streaming video feed which we advertised on our Facebook pages. Suddenly, people from everywhere could join the party live. Thanks to our iPad holders, Carol, Duane Richins, and Lily, our friends from across the nation joined the party live. Our star videographer for the streaming video feed became Nicole Lunt. She is Wanda Evan's daughter who came to support me since her mother couldn't be there. Nicole had been key in getting a lot of the Susan Support Team photos from around town, and, like her mother does, she immediately stepped in and made a huge difference in this event. She made the video stream great for the viewers, and we really appreciated her jumping in at the last minute.
By 5, most everyone had been "Pinked Out" with bling or tattoos or hair color or nails or all of the above, so we went out back on the hill to take a group photo. That's when I realized there were more than 50 people there! It was an amazing feeling of love and support. From there, Greg ushered everyone to the back playroom to make an announcement. He and Preston had been working on a surprise most of the day, in between doing everything else. He started by announcing what I call the Blue Mohawk video that had originally inspired me to make a video. A sister in cancer, Tina Richards from Boise, had made a video of when she shaved her head. My neighbor, Gayrene Claridge, had originally shared the video with me. Greg introduced Tina's video and showed it explaining we wanted to make shaving my head inspirational for others as well. Then, he made us all cry. He announced that Brooklyn, my daughter who is in college in Boise, had made a video for me, and with the help of Preston editing it together, he wanted to show it since she couldn't be there in person. Brooklyn was following the live stream and watched as we all broke into tears. Her video started with a short introduction with her in her pink wig. Just hearing her cute, sweet voice and personality lit up the room while bringing tears to many of us. Then, it went to pictures. The first picture was of her and said, "Not just me....". The second was of her and Trina, my best friend in Idaho with whom Brooklyn is living, and said, "Not just us......". And the third picture was of three hands all clasped together with three breast cancer support bracelets and said, "but the three of us, can you guess who...." and then, there she was. The fourth picture was of Brooklyn and Trina with Tina Richards from the Blue Mohawk video. Brooklyn had found the lady who made this video and met with her to do a photo shoot to be part of Brooklyn's video. There she was with what you might call a surrogate for what I am facing. It was a real connection for Brooklyn and I both. She suddenly had a person to give her hugs to and seeing that made me actually feel them, knowing they were for me. It was amazing and silly and crazy just in the way only Brooklyn can do. And mostly, it made her be right there, right with us, right in the room. (Brooklyn's video, the Blue Mohawk video, the support picture video that we showed throughout the party on the TV's, and the live streaming videos can all be seen at www.lindseyfamily.com/cancer When the Pretty in Pink video of the party is ready, I'll post it in the blog but it will be a week or so out still). I can't thank Tina enough. Brooklyn loved meeting her and I feel like I know her already.
So after the videos and a short break to dry tears, we were ready. It was time to cut my hair. As Suzie was getting ready, Greg re-entered the room as only Greg can. He wore a long pink wig, pink star Elton-John-like sunglasses, and of course, his pink speedo. It all matched his pink toenails and fingernails. It was the perfect tension-breaker. Suzie pulled out a beautiful new pink cape, pink spray bottle and pink comb while I announced our intention to do the cutting in three stages. I was determined not to cry and felt strong as long as I didn't think about what we were actually about to do.
Through the first cut, which took my hair from about four inches below my shoulders to about ear level, I never looked at the ground. I knew if I did, I couldn't stay strong. There were fifty people in the room watching, and I knew they would take their cues from me and my reactions. Greg and others kept me laughing and when the first style was finished, everyone applauded and said they LOVED my hair short. My hair hasn't been that short since eighth grade when my sister Sharon was in beauty school and I was her practice dummy, but it actually didn't look as bad as I thought.
We immediately moved to the next cut, which was just going to be a few inches long. Between Greg, and Preston, and my friends Diane, Mike and Michelle, someone continually held my hand, which helped a ton. Once again, that style pleased the crowd as everyone commented on how my eyes and check bones suddenly popped out. Now they were taking bets that I would never go back to long hair again after this. I still had not looked at the floor, but when I looked in the mirror, I was relieved to see my head was not quite as big as I had imagined and my face did not look super fat like I had feared.
Now was the final step--shaving it almost completely off. We were told to leave about 1/4 of an inch to keep it from itching and getting infected. There were no more scissors--only clippers now as Suzie "buzzed" me into the last and final stage. She completed the back before ending with the front and that was it. It was all gone. I still had not looked at the ground and didn't intend to. As they quickly cleaned up the floor, I kept my big smile and happy attitude as I took my first pictures with family and friends and little or no hair. When I looked in the mirror, I was surprised by how much darker my hair was than I had been wearing it. I have been coloring my hair for almost a decade to escape the gray that continued to creep in. My brown color was a contrast to the darker brownish black that lay against my scalp now. It didn't matter. It was done. And everyone was super supportive and encouraging telling me I was beautiful and that my eyes were even more amazing now. Whether it was the truth or a lie, it was definitely what I needed to hear so I was glad. After more pictures, everyone wanted to see the caps I had bought and my wig so I tried those on. Then I spent the rest of the evening just in my bare head. That was the best thing ever. Spending the evening in front of more than fifty people with my "bald" head immediately got me passed the fear of facing people and the public bald. It did exactly what I needed it to.
As the evening came to a close, thank goodness for Susie Case, Carole Brady, and the friends staying the night. They did an amazing job cleaning up and un-decorating. I don't know what I would have done without them as I was physically reaching my limits. It had been an incredibly busy three days. I was still on an emotional high as midnight approached. We had a poker game going and a couple of tables of Wahoo while I most sat in the recliner watching. I didn't want to go to bed. I knew once I let myself come down from the high, reality of what we had done would set in. But by 1:45 AM, it could no longer be avoided. We headed upstairs to bed and just as I feared, it all hit me. As I started to brush my teeth, I broke down in tears. I couldn't even look at myself in the mirror. I cried and turned off the light so I didn't have to see myself. I was a wreck. As we started the evening, I was a normal-looking person who happened to have cancer. Now, as I ended the day, I suddenly looked like a sick person. Before I had cancer, but I looked normal. Now, I look like I have cancer. Greg, Mike and Suzie tried their best to comfort me, but it was hard. I climbed into bed and laid my shaved head on my pillow for the first time. It was pokey and cold and just felt completely wrong so I cried some more. Greg held me and tried to reassure me. It was just hard.
I woke up throughout the night as my head was really, really cold. That would be one thing we would have to change--I obviously needed a stocking cap in which to sleep. The next morning I woke feeling more sick than I've ever felt so far. My body was exhausted, I was trembling and I was limp. Suddenly I didn't care how my hair looked anymore. I staggered into the shower hoping it would make me feel better. Wow, do I shampoo my head? Do I condition it? It was strange. I almost beat Greg out of the shower. I got dressed and tried on several of the caps I had purchased. All seemed to instantly give me a headache except for one--a beautiful pink hand-woven cap given to me by Irene at the party. Her friend had made it and it was my new very best friend. I didn't need the cap for looks, though it was exquisit, but I needed it to keep me warm. I headed downstairs and my energy was gone. I collapsed in the recliner trying to visit with all of the company as Mike, Preston, and Yuri cooked breakfast for everyone. The thought of food was nauseating though I finally managed to get down some eggs.
After breakfast, and before everyone left, we decided to do a balloon release. The note that came with the balloons Sandra sent the previous day talked about protecting someone by imagining them wrapped in a pink bubble safe away from harm. So we all proceeded outside to let the balloons go free as we lifted up our individual thoughts and prayers for my recovery. We had a huge bouquet of balloons for me to release and everyone else had several to release as well. From the back yard, up they went--all but mine that is! Like everything else with this stupid cancer, it had to be difficult--funny, but difficult. Sure enough, the huge bundle I released went straight up and caught on the electrical lines that run behind our house. Of course! The wind was swirling just enough to quickly wrap several of the balloons tightly around the lines. Great. Now what. Have no fear, Greg my hero is here! Out he came with a huge PVC pipe and over the fence he went and up onto the neighbor's storage shed with is large pipe in hand. He worked trying to convince the balloons to release, but with no success. Plan B included my large serrated bread knife taped to the end. Once again he began prodding the balloon bundle to leave. As the knife finally cut through the strings, the bundle released and quickly rose into the sky. By then the other balloons were barely visible as they had circled back around in the high altitude. Who else could have pulled that off? The only thing that would have made it perfect is if Greg had been in his pink speedo outfit from the previous day. We stood and watched the bundle until it was out of site and all laughed and my ingenious husband. The symbolism of how crazy and mixed up this cancer diagnosis has been from the very beginning was perfect.
After returning inside, I felt myself getting much worse. It was either a reaction from the chemo or exhaustion from the days before or a mixture of both. The expected chemo diarrea had started again leaving me feeling even more empty and by the time the last group left, I could barely crawl up the stairs and into bed. I slept five hours non-stop, got up to eat a bite and went back to bed for another eight hours. I had no idea what Monday would bring, but I knew the weekend couldn't have been better, even though I was sick on Sunday.
Monday morning I woke much more refreshed and actually fine with how my head looked. Getting ready to go to work I found dressing to be the new challenge. I have never had to worry about how the neckline of my clothes looked because the collar and neck have always been hidden by my hair. Each outfit I tried on looked odd to me because of the neckline. Four outfits later, I finally settled on one that looked "normal". Maybe I'll invest in some neck scarfs until I can get used to this neckline and collar stuff.
As for my head, I put a lot of thought into how I was going to go to work the first day after my party. Should I wear my wig? Should I wear a cap or a scarf? After worrying and wondering for days and day, the party made it clear to me. By being in front of so many people already, I didn't have any hesitation about being seen in public or by people with my "bald" head. I knew I was going to spend my first day at work as I was--bald. I wore my pink cap to keep my head warm as I went to the office, but once inside, I pulled it off and spent most of the day as I was.
Was that the right choice? If I wasn't going to wear my wig, why did I buy it? Here is what I decided. I want to be comfortable on a daily basis. I don't want to be ashamed. I don't want to feel like I have to hide. I have cancer--it's no secret. Just as I've said from the beginning, I don't want there to be any awkwardness about it. It is what it is. So in the workplace and on a daily basis, I will probably be bare-headed or with a cap or scarf. If there is a more formal event or I go somewhere where people don't already know I have cancer, I may wear my wig, we'll have to see. I know five weeks ago, those were not my feelings at all and picking a wig under which I could hide was the most important thing. I was going to wear my wig and pretend everything was normal. But interestingly now, my life is not normal. It is completely changed and I am completely changed. I may no longer be pretty with long hair to compliment my outside appearance but a wig isn't really going to change that. Instead, what I know is my beauty will come from the inside out. Those who know me will continue to see the beauty I hold within me as it lights up my eyes, my face and my spirit and that really has very little to do with what's on top of my head.
Raw video footage is now uploaded at www.lindseyfamily.com/cancer This includes Brooklyn's video, the blue mohawk video, the slide show of Susan Support Team photos and all three live streaming videos. We will be working on creating the editied Pretty in Pink video for a little while.
Also, I totally forgot to blog about the balloon release on Sunday and it's a story that must be told. If you've already read the blog, skip to the Sunday morning paragraph for the update.
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So much has happened since my last post--my second chemo, the Pretty in Pink party, my new bald appearance. I'll start with chemo #2 from last Thursday.
We first went to the lab where they accessed my port and did the blood work. While waiting for the lab results, we stopped in the Bouquet of Hope to look at scarfs. I picked out a few head caps but still have a bunch to figure out about using a scarf. The caps looked great with my hair but I wasn't too excited at the thought of them with no hair. While in the shop, I ran into a woman who had lymphedema. While I only saw her hand, wrist and part way up her forearm, I was completely shocked. Her arm was so severely swollen it literally wrinkled over her hand at the wrist. She was there looking for a compression sleeve to try to help. She said she thought the lymphedema had become much worse from the airplane ride over. It truly scared me and made me realize how quickly lymphedema could happen and how awful it could be. She had never seen Leona, the lymphedema specialist, and didn't know anything about lymphatic massage so I suggested she look into making an appointment. After that, now more than ever, I'm committed to following Leona's suggestions to helps me avoid lymphedema.
When we ventured up to the 3rd floor and went back to the chemo area, I was given to Cheryl, my nurse from last week. She said she saw me on the schedule and requested me. That made me feel good and was really nice because she was familiar with the bad reaction I had had last week and knew the plan we had set to slow things down. We started with the Dexamethasone, the steroid to prevent reactions. That is given in an IV drip for 15 minutes. This time, instead of then shooting in the Benadryl and Pepcid all at once, we did another 15 minute IV drip with those two drugs. That was immediately better. No dizziness, minimal reaction, and no suddenly feeling drunk. This was good. After that finished, we only had to wait 15 minutes before starting the Taxol (chemo) because the 30 minute wait is between the Dexamethasone and the chemo. The chemo I receive, Taxol, is supposed to take just about an hour to infuse. Cheryl slowed it way down causing it to take about 2.5 hours. But once again, it was great. I had no sleepy reaction, no numbing, very little reaction at all. In fact, Greg had planned to pick up our car that was getting some work done once I "conked out" and be back before I woke, but I never really even felt sleepy. The only bad part of the whole experience is that the whole process from lab to finish now takes 5 hours instead of 3, but it was so worth it. So that was it. We started at 10:30 AM and were leaving by 3:30 PM heading home with me relaxed, but not knocked out or hallucinating.
Thursday night our friends Mike and Suzie from Albuquerque came and Friday morning my dad, Preston and Yuri came to help us prepare for the Pretty in Pink party Saturday. I relaxed most of the day Friday in between doing small tasks trying to make sure I was well rested for the busy Saturday. With everyone's help, the house was cleaned, some additional food was prepared, beds were made for some of our out-of-town company coming, and we even make 50 plus Kisses of Hope goodie bags to give out to those who came to the party.
The real fun started Saturday as the house filled with people who had worked hard to make this Pretty in Pink Party perfect. Greg was amazing directing our family and friends in all of the necessary tasks to get things ready for a houseful of people. Carol Elders and Stephanie Saldana came at 9 AM with all the wonderful decorations and goodies. They had worked hard planning everything. With the help of Yuri, they transformed the house into a pink palace of inspiration and support. Our friends Paul and Diane came from Phoenix and immediately jumped in helping with food and setup. Friends from Tucson, John, Jennifer, Michelle and her kiddos came bringing a huge tub of Egees! Suzie, my Albuquerque friend and personal hair dresser, trained and prepared the Pink Out crew--Mike painted pink ribbon glitter tattoos, Rebecca Richins, Cheyanne Allred and Yuri learned to tie pink bling in hair and chalk hair, and helped with decorating nails.
Many who couldn't make it that afternoon for the party came earlier in the day to show support. Natalie Reynolds from the middle school came and gave me an amazing poster the middle school had printed of the wonderful support photos from the school's Pink Out day. She also presented me with a beautiful quilt made by Denise Crocket. What an amazing gift. A knock on the door brought bags and bags of balloons sent from Sandra Griffith Carpenter, one of my former newspaper editors, along with a note that brought me to tears. My dad brought me a bouquet of pink carnations, my mom's favorite flowers, and Randall, my father-in-law, brought beautiful pink roses. One of the most special gifts of the day was having Vikki "Mouse" (Vikki Colvin McIntyre) come from Tempe to photograph the special event. Vikki has been a part of our lives for more than 20 years since she was in high school and was one of my newspaper editors. She is an amazing photographer now and to have her photograph this moment in my journey was heart-touching. The scene was truly set for an amazing evening.
By afternoon the house started to swarm with people as 4 PM came and went. Even a friend from high school, Les Duncan, came from Phoenix to surprise me. Wonderful friends continued to flow in, some whom I haven't seen in years. Though I tried to stay seated as much as possible, every few moments brought new waves of more wonderful friends who came to stand by my side and support me.
Just before the party started, Greg set up a live streaming video feed which we advertised on our Facebook pages. Suddenly, people from everywhere could join the party live. Thanks to our iPad holders, Carol, Duane Richins, and Lily, our friends from across the nation joined the party live. Our star videographer for the streaming video feed became Nicole Lunt. She is Wanda Evan's daughter who came to support me since her mother couldn't be there. Nicole had been key in getting a lot of the Susan Support Team photos from around town, and, like her mother does, she immediately stepped in and made a huge difference in this event. She made the video stream great for the viewers, and we really appreciated her jumping in at the last minute.
By 5, most everyone had been "Pinked Out" with bling or tattoos or hair color or nails or all of the above, so we went out back on the hill to take a group photo. That's when I realized there were more than 50 people there! It was an amazing feeling of love and support. From there, Greg ushered everyone to the back playroom to make an announcement. He and Preston had been working on a surprise most of the day, in between doing everything else. He started by announcing what I call the Blue Mohawk video that had originally inspired me to make a video. A sister in cancer, Tina Richards from Boise, had made a video of when she shaved her head. My neighbor, Gayrene Claridge, had originally shared the video with me. Greg introduced Tina's video and showed it explaining we wanted to make shaving my head inspirational for others as well. Then, he made us all cry. He announced that Brooklyn, my daughter who is in college in Boise, had made a video for me, and with the help of Preston editing it together, he wanted to show it since she couldn't be there in person. Brooklyn was following the live stream and watched as we all broke into tears. Her video started with a short introduction with her in her pink wig. Just hearing her cute, sweet voice and personality lit up the room while bringing tears to many of us. Then, it went to pictures. The first picture was of her and said, "Not just me....". The second was of her and Trina, my best friend in Idaho with whom Brooklyn is living, and said, "Not just us......". And the third picture was of three hands all clasped together with three breast cancer support bracelets and said, "but the three of us, can you guess who...." and then, there she was. The fourth picture was of Brooklyn and Trina with Tina Richards from the Blue Mohawk video. Brooklyn had found the lady who made this video and met with her to do a photo shoot to be part of Brooklyn's video. There she was with what you might call a surrogate for what I am facing. It was a real connection for Brooklyn and I both. She suddenly had a person to give her hugs to and seeing that made me actually feel them, knowing they were for me. It was amazing and silly and crazy just in the way only Brooklyn can do. And mostly, it made her be right there, right with us, right in the room. (Brooklyn's video, the Blue Mohawk video, the support picture video that we showed throughout the party on the TV's, and the live streaming videos can all be seen at www.lindseyfamily.com/cancer When the Pretty in Pink video of the party is ready, I'll post it in the blog but it will be a week or so out still). I can't thank Tina enough. Brooklyn loved meeting her and I feel like I know her already.
So after the videos and a short break to dry tears, we were ready. It was time to cut my hair. As Suzie was getting ready, Greg re-entered the room as only Greg can. He wore a long pink wig, pink star Elton-John-like sunglasses, and of course, his pink speedo. It all matched his pink toenails and fingernails. It was the perfect tension-breaker. Suzie pulled out a beautiful new pink cape, pink spray bottle and pink comb while I announced our intention to do the cutting in three stages. I was determined not to cry and felt strong as long as I didn't think about what we were actually about to do.
Through the first cut, which took my hair from about four inches below my shoulders to about ear level, I never looked at the ground. I knew if I did, I couldn't stay strong. There were fifty people in the room watching, and I knew they would take their cues from me and my reactions. Greg and others kept me laughing and when the first style was finished, everyone applauded and said they LOVED my hair short. My hair hasn't been that short since eighth grade when my sister Sharon was in beauty school and I was her practice dummy, but it actually didn't look as bad as I thought.
We immediately moved to the next cut, which was just going to be a few inches long. Between Greg, and Preston, and my friends Diane, Mike and Michelle, someone continually held my hand, which helped a ton. Once again, that style pleased the crowd as everyone commented on how my eyes and check bones suddenly popped out. Now they were taking bets that I would never go back to long hair again after this. I still had not looked at the floor, but when I looked in the mirror, I was relieved to see my head was not quite as big as I had imagined and my face did not look super fat like I had feared.
Now was the final step--shaving it almost completely off. We were told to leave about 1/4 of an inch to keep it from itching and getting infected. There were no more scissors--only clippers now as Suzie "buzzed" me into the last and final stage. She completed the back before ending with the front and that was it. It was all gone. I still had not looked at the ground and didn't intend to. As they quickly cleaned up the floor, I kept my big smile and happy attitude as I took my first pictures with family and friends and little or no hair. When I looked in the mirror, I was surprised by how much darker my hair was than I had been wearing it. I have been coloring my hair for almost a decade to escape the gray that continued to creep in. My brown color was a contrast to the darker brownish black that lay against my scalp now. It didn't matter. It was done. And everyone was super supportive and encouraging telling me I was beautiful and that my eyes were even more amazing now. Whether it was the truth or a lie, it was definitely what I needed to hear so I was glad. After more pictures, everyone wanted to see the caps I had bought and my wig so I tried those on. Then I spent the rest of the evening just in my bare head. That was the best thing ever. Spending the evening in front of more than fifty people with my "bald" head immediately got me passed the fear of facing people and the public bald. It did exactly what I needed it to.
As the evening came to a close, thank goodness for Susie Case, Carole Brady, and the friends staying the night. They did an amazing job cleaning up and un-decorating. I don't know what I would have done without them as I was physically reaching my limits. It had been an incredibly busy three days. I was still on an emotional high as midnight approached. We had a poker game going and a couple of tables of Wahoo while I most sat in the recliner watching. I didn't want to go to bed. I knew once I let myself come down from the high, reality of what we had done would set in. But by 1:45 AM, it could no longer be avoided. We headed upstairs to bed and just as I feared, it all hit me. As I started to brush my teeth, I broke down in tears. I couldn't even look at myself in the mirror. I cried and turned off the light so I didn't have to see myself. I was a wreck. As we started the evening, I was a normal-looking person who happened to have cancer. Now, as I ended the day, I suddenly looked like a sick person. Before I had cancer, but I looked normal. Now, I look like I have cancer. Greg, Mike and Suzie tried their best to comfort me, but it was hard. I climbed into bed and laid my shaved head on my pillow for the first time. It was pokey and cold and just felt completely wrong so I cried some more. Greg held me and tried to reassure me. It was just hard.
I woke up throughout the night as my head was really, really cold. That would be one thing we would have to change--I obviously needed a stocking cap in which to sleep. The next morning I woke feeling more sick than I've ever felt so far. My body was exhausted, I was trembling and I was limp. Suddenly I didn't care how my hair looked anymore. I staggered into the shower hoping it would make me feel better. Wow, do I shampoo my head? Do I condition it? It was strange. I almost beat Greg out of the shower. I got dressed and tried on several of the caps I had purchased. All seemed to instantly give me a headache except for one--a beautiful pink hand-woven cap given to me by Irene at the party. Her friend had made it and it was my new very best friend. I didn't need the cap for looks, though it was exquisit, but I needed it to keep me warm. I headed downstairs and my energy was gone. I collapsed in the recliner trying to visit with all of the company as Mike, Preston, and Yuri cooked breakfast for everyone. The thought of food was nauseating though I finally managed to get down some eggs.
After breakfast, and before everyone left, we decided to do a balloon release. The note that came with the balloons Sandra sent the previous day talked about protecting someone by imagining them wrapped in a pink bubble safe away from harm. So we all proceeded outside to let the balloons go free as we lifted up our individual thoughts and prayers for my recovery. We had a huge bouquet of balloons for me to release and everyone else had several to release as well. From the back yard, up they went--all but mine that is! Like everything else with this stupid cancer, it had to be difficult--funny, but difficult. Sure enough, the huge bundle I released went straight up and caught on the electrical lines that run behind our house. Of course! The wind was swirling just enough to quickly wrap several of the balloons tightly around the lines. Great. Now what. Have no fear, Greg my hero is here! Out he came with a huge PVC pipe and over the fence he went and up onto the neighbor's storage shed with is large pipe in hand. He worked trying to convince the balloons to release, but with no success. Plan B included my large serrated bread knife taped to the end. Once again he began prodding the balloon bundle to leave. As the knife finally cut through the strings, the bundle released and quickly rose into the sky. By then the other balloons were barely visible as they had circled back around in the high altitude. Who else could have pulled that off? The only thing that would have made it perfect is if Greg had been in his pink speedo outfit from the previous day. We stood and watched the bundle until it was out of site and all laughed and my ingenious husband. The symbolism of how crazy and mixed up this cancer diagnosis has been from the very beginning was perfect.
After returning inside, I felt myself getting much worse. It was either a reaction from the chemo or exhaustion from the days before or a mixture of both. The expected chemo diarrea had started again leaving me feeling even more empty and by the time the last group left, I could barely crawl up the stairs and into bed. I slept five hours non-stop, got up to eat a bite and went back to bed for another eight hours. I had no idea what Monday would bring, but I knew the weekend couldn't have been better, even though I was sick on Sunday.
Monday morning I woke much more refreshed and actually fine with how my head looked. Getting ready to go to work I found dressing to be the new challenge. I have never had to worry about how the neckline of my clothes looked because the collar and neck have always been hidden by my hair. Each outfit I tried on looked odd to me because of the neckline. Four outfits later, I finally settled on one that looked "normal". Maybe I'll invest in some neck scarfs until I can get used to this neckline and collar stuff.
As for my head, I put a lot of thought into how I was going to go to work the first day after my party. Should I wear my wig? Should I wear a cap or a scarf? After worrying and wondering for days and day, the party made it clear to me. By being in front of so many people already, I didn't have any hesitation about being seen in public or by people with my "bald" head. I knew I was going to spend my first day at work as I was--bald. I wore my pink cap to keep my head warm as I went to the office, but once inside, I pulled it off and spent most of the day as I was.
Was that the right choice? If I wasn't going to wear my wig, why did I buy it? Here is what I decided. I want to be comfortable on a daily basis. I don't want to be ashamed. I don't want to feel like I have to hide. I have cancer--it's no secret. Just as I've said from the beginning, I don't want there to be any awkwardness about it. It is what it is. So in the workplace and on a daily basis, I will probably be bare-headed or with a cap or scarf. If there is a more formal event or I go somewhere where people don't already know I have cancer, I may wear my wig, we'll have to see. I know five weeks ago, those were not my feelings at all and picking a wig under which I could hide was the most important thing. I was going to wear my wig and pretend everything was normal. But interestingly now, my life is not normal. It is completely changed and I am completely changed. I may no longer be pretty with long hair to compliment my outside appearance but a wig isn't really going to change that. Instead, what I know is my beauty will come from the inside out. Those who know me will continue to see the beauty I hold within me as it lights up my eyes, my face and my spirit and that really has very little to do with what's on top of my head.
Wednesday, February 6, 2013
Focusing on the Right Perspective............
2/6/13--Wednesday--Day 116--It's Not What You Have to Go Through, But How You Look at It
As of today, I'm down to about two days of having my hair. Interestingly, since planning the Pretty in Pink party, I haven't cried at all about losing my hair. Talk about the perfect diversion. That is good because I cried for about a week during December every morning when I would sit and curl my hair. It's been easier since using my hair loss as an inspiration for others facing this same thing. Making the Pretty in Pink video, with the help of my family and friends and many supporters has been the perfect distraction.
On Friday, I found out the entire middle school and all three of our elementary schools, Dorothy Stinson, Lafe Nelson, and Ruth Powell had a Pink Out day in my name. They took wonderful pictures decked out in pink holding Susan's Support Team signs. When I first heard, it brought me to tears. How wonderful to have people rally around me in support of fighting breast cancer. It makes losing my hair so small in comparison to the awesomeness of such amazing support. I am so grateful for the teachers and administrators who organized this and helped students relate to me as the "lady responsible for the computers."
The Pretty in Pink pictures have continued to come in. I am amazed at how many of my former students have followed my blog and stayed super supportive through this. Some of my former yearbook editors and staff members, newspaper editors and staff members, even some of my former English students have all sent pictures. I am humbled at the thought that I made such a difference in their lives that they care about what I'm facing more than a decade later. Even Preston's Devil Dancesport group all dressed in pink and took a support picture. Luckily it was planned for tonight and I was able to stop by since we came to Mesa a day early. I stood in front of those young adults and told my story of wanting to inspire others as they faced hair loss and thanked them for helping me create this video.
My neighbors, Gayrene Claridge and her daughter Kristi Fertig (one of my former newspaper editors), painted a tree trunk in my honor. It is completely pink with a pink ribbon painted on it. As people come to the party and pass the tree, they will have the opportunity to stop and sign it. That was really cool and I was so impressed they took the time and effort to do that to show their support!
I hate the thought of Saturday coming and losing my hair, but I am excited for everyone to come and be a part of the support system. I told someone losing my hair may seem insignificant in the bigger picture of things, but it would be like if you had to go to work with your belly fat showing. We all "hide" our imperfections like belly fat, so think for a minute what it would be like to know, starting Saturday, you had to go everywhere, work, the store, out to eat, with your belly fully exposed. That's the best comparison I can make as to how I'm feeling about going out bald. Yes, I have an awesome wig, but I've heard from so many people that it just isn't comfortable and you end up not wearing it. We are going to the Boutique of Hope at the Cancer Center tomorrow after labs and before chemo to learn how to wrap a scarf and maybe purchase a couple. My friend Wanda Evans gave me some, but I haven't had the nerve to look at them yet. Guess I'll work with those some on Friday.
I've been a bit frustrated with the fatigue I'm experiencing. This afternoon, for example, we planned to stop at a few stores on our way in to town. I made it through one store for about thirty minutes and then my body became possessed. I grew flush, which Greg immediately noticed. I started sweating. The whole store was spinning. I finally had to go to the car while Greg checked out. It makes me so angry. I should be able to take a few breaths and get through it, but it just takes over my body completely. I so want to have mind over matter, but no matter how much I want that, my head becomes totally foggy and I get dizzy and I'm just done. I can't figure out if it is still from the surgery three weeks ago or from the chemo last week or both. Needless to say, we didn't make any more stops. Greg started driving and I fell asleep instantly.
In spite of the physical and mental challenges, I was still able to work two full days and one half day this week, so that is good. Thank goodness the dizziness is not an issue at work because my job is sitting at a desk so when the dizzy spells happen, I just put my head back and continue to work.
Last night I did decide coming over to Mesa the night before chemo is probably not such a good idea. I grew anxious and realized it lengthens the "chemo experience" to a two day event instead of one. I told Greg through, a couple of tears, I didn't want to do chemo again. I've done it once and I know what it is now and I'm done. I was really dreading it when all of a sudden, he put it into better perspective. "You only have 15 more left," he said. What? How did he figure that? I have six months of this. But when he stopped and explained, 12 once a week treatments (11 left) and 4 once every three week treatments, it helped--A LOT. Fifteen.....I can do fifteen. It won't be fun, but it's doable. Just like how the Pretty in Pink party has changed my perspective on losing my hair, I was grateful for Greg's perspective and realized it's not always about what you have to go through, but how you look at it.
As of today, I'm down to about two days of having my hair. Interestingly, since planning the Pretty in Pink party, I haven't cried at all about losing my hair. Talk about the perfect diversion. That is good because I cried for about a week during December every morning when I would sit and curl my hair. It's been easier since using my hair loss as an inspiration for others facing this same thing. Making the Pretty in Pink video, with the help of my family and friends and many supporters has been the perfect distraction.
On Friday, I found out the entire middle school and all three of our elementary schools, Dorothy Stinson, Lafe Nelson, and Ruth Powell had a Pink Out day in my name. They took wonderful pictures decked out in pink holding Susan's Support Team signs. When I first heard, it brought me to tears. How wonderful to have people rally around me in support of fighting breast cancer. It makes losing my hair so small in comparison to the awesomeness of such amazing support. I am so grateful for the teachers and administrators who organized this and helped students relate to me as the "lady responsible for the computers."
The Pretty in Pink pictures have continued to come in. I am amazed at how many of my former students have followed my blog and stayed super supportive through this. Some of my former yearbook editors and staff members, newspaper editors and staff members, even some of my former English students have all sent pictures. I am humbled at the thought that I made such a difference in their lives that they care about what I'm facing more than a decade later. Even Preston's Devil Dancesport group all dressed in pink and took a support picture. Luckily it was planned for tonight and I was able to stop by since we came to Mesa a day early. I stood in front of those young adults and told my story of wanting to inspire others as they faced hair loss and thanked them for helping me create this video.
My neighbors, Gayrene Claridge and her daughter Kristi Fertig (one of my former newspaper editors), painted a tree trunk in my honor. It is completely pink with a pink ribbon painted on it. As people come to the party and pass the tree, they will have the opportunity to stop and sign it. That was really cool and I was so impressed they took the time and effort to do that to show their support!
I hate the thought of Saturday coming and losing my hair, but I am excited for everyone to come and be a part of the support system. I told someone losing my hair may seem insignificant in the bigger picture of things, but it would be like if you had to go to work with your belly fat showing. We all "hide" our imperfections like belly fat, so think for a minute what it would be like to know, starting Saturday, you had to go everywhere, work, the store, out to eat, with your belly fully exposed. That's the best comparison I can make as to how I'm feeling about going out bald. Yes, I have an awesome wig, but I've heard from so many people that it just isn't comfortable and you end up not wearing it. We are going to the Boutique of Hope at the Cancer Center tomorrow after labs and before chemo to learn how to wrap a scarf and maybe purchase a couple. My friend Wanda Evans gave me some, but I haven't had the nerve to look at them yet. Guess I'll work with those some on Friday.
I've been a bit frustrated with the fatigue I'm experiencing. This afternoon, for example, we planned to stop at a few stores on our way in to town. I made it through one store for about thirty minutes and then my body became possessed. I grew flush, which Greg immediately noticed. I started sweating. The whole store was spinning. I finally had to go to the car while Greg checked out. It makes me so angry. I should be able to take a few breaths and get through it, but it just takes over my body completely. I so want to have mind over matter, but no matter how much I want that, my head becomes totally foggy and I get dizzy and I'm just done. I can't figure out if it is still from the surgery three weeks ago or from the chemo last week or both. Needless to say, we didn't make any more stops. Greg started driving and I fell asleep instantly.
In spite of the physical and mental challenges, I was still able to work two full days and one half day this week, so that is good. Thank goodness the dizziness is not an issue at work because my job is sitting at a desk so when the dizzy spells happen, I just put my head back and continue to work.
Last night I did decide coming over to Mesa the night before chemo is probably not such a good idea. I grew anxious and realized it lengthens the "chemo experience" to a two day event instead of one. I told Greg through, a couple of tears, I didn't want to do chemo again. I've done it once and I know what it is now and I'm done. I was really dreading it when all of a sudden, he put it into better perspective. "You only have 15 more left," he said. What? How did he figure that? I have six months of this. But when he stopped and explained, 12 once a week treatments (11 left) and 4 once every three week treatments, it helped--A LOT. Fifteen.....I can do fifteen. It won't be fun, but it's doable. Just like how the Pretty in Pink party has changed my perspective on losing my hair, I was grateful for Greg's perspective and realized it's not always about what you have to go through, but how you look at it.
Monday, February 4, 2013
Life with Chemo--Returning to Work...........
2/4/13--Monday--Day 114--Working Today Was Really Good For Me
Well, I made it through the weekend after chemo! We had been told the day after chemo (Friday), people do well, but the second day (Saturday) and third day (Sunday), some people experience side effects so I was super curious what the weekend would bring. On Friday, I slept in and rested in bed until later in the morning. When I got up, it was the second day in a row that I didn't really "feel" my surgery. My stomach and incisions weren't consciously hurting and it was nice to feel semi-normal again.
We decided to venture out for lunch for the first time since being home. I still don't really have much of an apetite, but it was nice to get out. After eating, on the way home, we made a quick stop and while Greg ran inside a store, I saw some friends and got out of the car to give hugs and catch up. We stood talking to them for about 45 minutes, and besides being cold in the shade, I did really well. My confidence was increasing and for the first time I was feeling good. From there we headed home to meet Jan who had Carson and Kelli in town for the week. It was nice to finally meet and talk to Kelli. She had been at the hospital when I was completely out of it, so I remembered her face, but that was it. I was able to relax in the recliner while we visited which rejuvenated me some.
After they left, we headed back out, this time to my office. I wanted to meet with Dr. T. and discuss going back to work for a few hours starting on Monday. And even though it would be just three weeks since my surgery, I had a note from the doctor that I could return to work "self regulated" when I felt comfortable. Greg went with me because my head is still spinning enough for me not to feel safe driving just yet. Also, when I hit that wall of exhaustion, there really hasn't been much warning. I just suddenly feel like a balloon that has lost its air, and I sort of become a limp puppet. When we first arrived, we stood by my office door and visited with my team for about 30 minutes. After that, we met with Dr. T for about an hour. By the time we were finished, my head was spinning and I was done. I had done a lot throughout the day but I was glad Greg was with me to take me home. So other than some fatigue, I felt really pretty good Friday. I hadn't been walking since the previous Saturday because it had been brutally cold and windy the first part of the week, but we did manage to get in a mile walk before Friday was over.
Early Saturday morning, I did begin having diarrhea, a known and somewhat expected side effect from the chemo, but it was definitely bearable. Saturday I found myself much more fatigued. After eating breakfast, we went for a walk, this time 1.5 miles. I had to hang on to Greg the last half mile as I was so light headed. That has been the frustrating part of this recovery. I don't know if it is from the anesthesia still working its way out of my body or what, but I constantly feel like I'm in the clouds. It's like what you feel when you take a decongestant and you just feel fuzzy. I was feeling it before the chemo, but Saturday it seemed to be even worse. I went with Greg and sat in the car as he changed the oil in the Prius, then I came home and stayed in the recliner most of the afternoon. I just didn't have the strength to even really lift my head. By evening, I felt a little better but I knew that was the fatigue they had talked about as a result of chemo.
Sunday morning I felt better. After eating we went to the grocery store, picked up some chicken for lunch and then walked 1.75 miles. I was able to help put away groceries, which was nice but after that, it was another afternoon of being in the recliner. We watched the Super Bowel game and I did a few loads of laundry, but that was the extent of my energy.
I went to bed early Sunday night wanting to get up early Monday morning and start adjusting back to a work schedule. As I was getting ready for work Monday, I felt scared. I had been out for three weeks and going back to work just felt a little intimidating. My team had been doing fine without me. Was I going to now slow everything down? I know that sounds odd, but I have never let my co-workers see me when I am weak or not on my top game until now. I'm the boss, and I've always been "together". Now everyone knew I was sick with cancer, which in my mind made me weak. And maybe that wasn't it, but for whatever reason, I was feeling very intimidated about returning to work. Interestingly, when I went to get dressed, I decided to try on my dress pants, never expecting them to fit due to the swelling from surgery. What a surprise to find not only did they fit, but I had extra room in them! I was super excited! I wasn't going to have to go to work in my sweats and in the weirdest way, I gained some confidence back.
I spent the first two hours working from home making sure I felt like going into the office. About 9:30 Greg dropped me off. My morning was filled with projects that had been waiting for my return. Greg picked me up for lunch and after eating, dropped me back off. Within an hour after lunch, things became more challenging. I worked an hour longer than I should have before calling Greg, but at the end of the day, I pretty much put in a full day and felt good about myself, even though I was exhausted. As soon as I got home, I fell fast asleep in the recliner for more than an hour. I'm not sure I will be able to work full days every day, especially toward the end of the week, but for now, working today was really good for me.
Well, I made it through the weekend after chemo! We had been told the day after chemo (Friday), people do well, but the second day (Saturday) and third day (Sunday), some people experience side effects so I was super curious what the weekend would bring. On Friday, I slept in and rested in bed until later in the morning. When I got up, it was the second day in a row that I didn't really "feel" my surgery. My stomach and incisions weren't consciously hurting and it was nice to feel semi-normal again.
We decided to venture out for lunch for the first time since being home. I still don't really have much of an apetite, but it was nice to get out. After eating, on the way home, we made a quick stop and while Greg ran inside a store, I saw some friends and got out of the car to give hugs and catch up. We stood talking to them for about 45 minutes, and besides being cold in the shade, I did really well. My confidence was increasing and for the first time I was feeling good. From there we headed home to meet Jan who had Carson and Kelli in town for the week. It was nice to finally meet and talk to Kelli. She had been at the hospital when I was completely out of it, so I remembered her face, but that was it. I was able to relax in the recliner while we visited which rejuvenated me some.
After they left, we headed back out, this time to my office. I wanted to meet with Dr. T. and discuss going back to work for a few hours starting on Monday. And even though it would be just three weeks since my surgery, I had a note from the doctor that I could return to work "self regulated" when I felt comfortable. Greg went with me because my head is still spinning enough for me not to feel safe driving just yet. Also, when I hit that wall of exhaustion, there really hasn't been much warning. I just suddenly feel like a balloon that has lost its air, and I sort of become a limp puppet. When we first arrived, we stood by my office door and visited with my team for about 30 minutes. After that, we met with Dr. T for about an hour. By the time we were finished, my head was spinning and I was done. I had done a lot throughout the day but I was glad Greg was with me to take me home. So other than some fatigue, I felt really pretty good Friday. I hadn't been walking since the previous Saturday because it had been brutally cold and windy the first part of the week, but we did manage to get in a mile walk before Friday was over.
Early Saturday morning, I did begin having diarrhea, a known and somewhat expected side effect from the chemo, but it was definitely bearable. Saturday I found myself much more fatigued. After eating breakfast, we went for a walk, this time 1.5 miles. I had to hang on to Greg the last half mile as I was so light headed. That has been the frustrating part of this recovery. I don't know if it is from the anesthesia still working its way out of my body or what, but I constantly feel like I'm in the clouds. It's like what you feel when you take a decongestant and you just feel fuzzy. I was feeling it before the chemo, but Saturday it seemed to be even worse. I went with Greg and sat in the car as he changed the oil in the Prius, then I came home and stayed in the recliner most of the afternoon. I just didn't have the strength to even really lift my head. By evening, I felt a little better but I knew that was the fatigue they had talked about as a result of chemo.
Sunday morning I felt better. After eating we went to the grocery store, picked up some chicken for lunch and then walked 1.75 miles. I was able to help put away groceries, which was nice but after that, it was another afternoon of being in the recliner. We watched the Super Bowel game and I did a few loads of laundry, but that was the extent of my energy.
I went to bed early Sunday night wanting to get up early Monday morning and start adjusting back to a work schedule. As I was getting ready for work Monday, I felt scared. I had been out for three weeks and going back to work just felt a little intimidating. My team had been doing fine without me. Was I going to now slow everything down? I know that sounds odd, but I have never let my co-workers see me when I am weak or not on my top game until now. I'm the boss, and I've always been "together". Now everyone knew I was sick with cancer, which in my mind made me weak. And maybe that wasn't it, but for whatever reason, I was feeling very intimidated about returning to work. Interestingly, when I went to get dressed, I decided to try on my dress pants, never expecting them to fit due to the swelling from surgery. What a surprise to find not only did they fit, but I had extra room in them! I was super excited! I wasn't going to have to go to work in my sweats and in the weirdest way, I gained some confidence back.
I spent the first two hours working from home making sure I felt like going into the office. About 9:30 Greg dropped me off. My morning was filled with projects that had been waiting for my return. Greg picked me up for lunch and after eating, dropped me back off. Within an hour after lunch, things became more challenging. I worked an hour longer than I should have before calling Greg, but at the end of the day, I pretty much put in a full day and felt good about myself, even though I was exhausted. As soon as I got home, I fell fast asleep in the recliner for more than an hour. I'm not sure I will be able to work full days every day, especially toward the end of the week, but for now, working today was really good for me.
Friday, February 1, 2013
First Day of Chemotherapy--The Dreaded 3rd Floor.............
1/31/13--Thursday--Day 110--Focusing on Chemo as the Path to the Cure Makes this Very Doable!
We thought we'd come to Mesa yesterday, but once I went to have my nails done, my energy was gone and I didn't feel like making the trip. It seems my endurance still maxes out at about an hour and a half no matter what I'm doing. So this morning we left by 6 AM for our first day of chemo.
We started at Preston's signing some paperwork for him to move into a little larger apartment. His current apartment is just over 400 sq ft and I can't tell you the number of times we've all stayed with him along with Mike and Suzie and even Brooklyn. We would fill the place with air mattresses and he never complained. The new place will be twice the size with a den where we'll put an extra bed so that in itselfe will help a ton and I won't feel so bad imposing.
After the paperwork, we arrived at the MD Anderson Cancer Center at 10 AM as scheduled. First I reported to the lab center. A young lady named Jesse took me back to do my labs and once she learned it was my first time getting my port accessed, she was careful to explain every step. We had been told to place a glob of the prescription lidocaine cream on the port area an hour before coming. She said it was really good we did that as she removed the band aide and started poking around the area with her fingers feeling for the bumps that mark the corners of the port. The Bard Power Port is a triangle shape device about the size of a bottle cap and the diameter of a quarter. The top looks like a mini trampoline with a membrane of some kind stretched over it. It is a self-sealing silicon septum so after a special needle accesses it, it reseals itself. Under the septum (trampoline) is a small basin. On the top of the port, each corner has bumps called Palpation Points on the rim of the port so the person accessing it can absolutely feel all edges of the port and determine the positioning. The port is surgically inserted under my skin by my left clavicle bone with nothing sticking out of the skin. The trampoline-like membrane is attached to a sealed basin which has a long catheter running out of it and is inserted into one of my large central veins that goes to my heart. This way medications or fluids can be delivered directly to my blood stream, and blood samples can be taken from my blood stream with no need to have repeated sticks in my wrist and veins.
Jesse spent time pushing on the port making sure she had a good handle on the positioning of it. Then she brought out the supplies, which included a mask for her and I to wear because this was a sterile procedure. She started by cleaning the skin with Chloraprep which was this cool sponge on a wand she punctured that contained antiseptic which fed into the attached sponge. It was like one of those dish soap scrubbers that has soap in the handle that comes out the sponge once you start rubbing the dishes. She then put on a special solution around the area so the tape would come off easily later. She sprayed a freeze antiseptic spray on the area right on top of the port for 10 seconds which also helped numb the area. Then she inserted the PowerLoc needle or what she called a Huber needle, which is basically a the special curved needle that won't hurt the port. I didn't even feel a pinch when the needle when in. "That doesn't feel right," she said and quickly made an adjustment saying "there we go." This made me realize experience is needed to access the port. She confirmed it takes doing it a hundred times or so to really get a good feel when it's right. I was glad to have someone who could recognized that. She tested it by making sure it could pull blood then rinsed it with some saline.
She told me my orders were for a CBC which was a Complete Blood Count screening and a Hepatic Function Pannel for the Liver. The blood count was mainly so they could watch my red blood cells, my white blood cells and my platelets. The liver screen is to make sure my liver isn't being hurt throughout the treatment. Once she pulled the tubes of blood out of the port, she flushed the port with two vials of saline and did what they call a Heparin lock on the port, which basically means they fill the port with Heparin to keep it from clotting. She finished by covering the whole area with clear cellophane band aide called Tegaderm which sealed around the edges and made a sterile pocket type environment so just the tubing came out.
From there we headed to the second floor. Last week the clinic had given me a large section to read on chemotherapy so Michelle, Dr. C's assistant, wanted to meet with us to answer questions we had after reading the material. Of course, I had a ton. She carefully listened and answered each one. I started with Greg's big questions, "Am I for sure going to lose my hair? Some of the literature said thinning?" I knew the answer to that, but we were both hoping it had changed. It hadn't. She confirmed my hair would for sure fall out. We went through a serious of about 10 more questions and Michelle was able to carefully explain them all but one. "What stage am I?" Because staging depended on the last pathology report as well as the first, we had never been clearly told. We think Dr. Matt might have said Stage 3A, but we weren't positive. And it's not that it matters so much, I just really wanted to know. Michelle said she would research that and get back to us for sure.
Even though it was getting close to time to make the dreaded rise to the 3rd floor, I wanted pictures with everyone before I lost my hair. They were all so accommodating. As they came in, I told them about my Pretty in Pink party and they were all so excited. We got a picture with Michelle and Lisa, assistance and nurse to Dr. C. They tracked down Dr. Byrum and Melissa, so I got a picture with them. Even Dr. C stopped in and took a picture. And we got pictures with Adrianna, my nurse navigator, and the two sweetest nurses there, Tia and Betsy. I was so happy and that meant the world to me. The only one we missed was Dr. Matt because he was in surgery so we'll have to find a way to photoshop him in.
That was it. There was no more avoiding. It was noon so we were already technically late to infusion, but they take you when you get there. We walked down the long 2nd floor hallway past all the empty chairs to the elevator. I didn't want to push that button. From the beginning I said I would never need to go to the 3rd floor, but here I was. I stood in the elevator for a few seconds staring at the button. Greg thought he pushed it but it never lite up so we found ourselves down on floor one--the perfect chance to escape, but I didn't, of course. Instead, I reached over and pressed it--floor 3--then held my breathe as we ascended to the top floor. The elevator doors opened and I sighed a breath of relief. It looked just like the second floor but different colors. I don't know what I was expecting. There was the same long waiting area looking out over the long windows in the courtyard that was now under construction for their five story tower expansion. There were what seemed like hundreds of chairs filled with very few people. I went to the checkin desk just like I did on floor two. A nice lady named Donna greeted me. "I'm a newbie," I admitted. "This is my first time to the third floor." I told her my story of my first day there with Dale the volunteer and how I didn't even know what "the infusion floor" meant. She laughed. She said they were all nice up there and I would be taken good care of. Instead of labels, she put a hospital armband on me explaining they want to make absolute sure they are administering the correct drugs to the correct person. I asked her if they had water back there as I was quickly reaching my limit of being active. She said yes they had water and juice and would even serve me lunch. Wow, you can't beat that!
We sat down in two of those empty chairs waiting to be called back, which didn't take long. The aid escorted us back to the center area of the building where, on the second floor the exam rooms are located. On floor three, it's a large open area all the way to the windows on the other side of the building, but it is divided by low cubicles. It was really nice. There were private rooms with beds on the wall against the waiting area if you didn't feel good and wanted to lay down to receive your treatment. Then the rest of the area was filled with cubicles each with a comfortable looking recliner and a chair. A nurse sat at the end between the two cubicles so it looked like a 2:1 ratio of care. They lead me to the best seat in the house--by the window overlooking the parking lot--and said there was no guarantee I could get this seat every time, then laughed. Unfortunately Greg's seat wasn't near as comfortable as mine. Cheryl was my nurse and I explained this was my first time, so she said she would explain every step and she did. She was great.
It is up to the nurse to read the lab work and do the calculations for the chemo that is ordered. They calculate your weight, height and body mass along with your lab results to determine how much of the doctor-ordered medicines you will receive. After they do the calculation, a second nurse does it as well to check accuracy. Then they order the medicine from the pharmacist who also looks over the calculations. First there are three pre medications. Dexamethasone is an anti-inflammatory and immunosuppressant steroid that helps prevent reactions. In addition, I would receive Benadryl to help prevent reactions and finally Pepcid to help with stomach irritation. They infuse all of those in within 15 minutes. Benadryl usually knocks me out when I take it at home, which is why I rarely take it. This was even more potent. It didn't take long before the room started spinning and I became "drunk" as though I had had one too many margarita's. I was trying to stay focused because the building Chaplin had come by. He recognized me and while he wasn't the hospital Chaplin we had talked to in the hospital, he had come to see me when I was less conscious. I enjoyed talking to him and especially praying with him, but I was glad when he left so I could tell the nurse of my crazy head. When I did, she said I should not be feeling that way. She went to check with someone and returned saying it was probably because we put the Benadryl in too quickly but it would be okay. There is a 30 minute wait before they start the chemo drug, Taxol. During this time Cheryl carefully explained the known side effects and when I should call the clinic. Again, she did a great job.
Finally it was time. The pharmacist brought out the Taxol and we were started. I was so glad because I could barely stay awake by then. It was supposed to take an hour from here. They brought me a warm blanket and I was out. My spinning head forced me to slept. I didn't sleep too long though as I woke up when my left hand felt tingly and funny. It was tingly and numb in my ring and pinky fingers a down my hand and wrist. When I asked the nurse about it, she stopped the infusion immediately. She explained that was a reaction and called Dr. C. By the time Dr. C called her back, the tingling had gotten better. She started the infusion on half the speed this time. When I tolerated that for a bit, she increased it back to full speed. Almost immediately my feet and legs went numb. Following Dr. C's orders, she reduced it back to half speed and gave me some Ativan--great, another sleepy drug. The tingling mostly went away. She explained that my infusions will probably have to take longer because of my reactions. Instead of planning 2.5 hours, we should plan 3.5 to 4 hours.
When we were finally finished, she removed the tape and needle accessing my port after doing the same flush routine they did downstairs at the lab. When I stood up, I was very wobbly so she and Greg both insisted on a wheelchair to take me downstairs. I hated that. But that was it. We were in the car and on the way home. I crashed immediately having to forgo my visit with my grandma and Aunt Mary, though I vaguely remember telling Greg to take me there and him saying okay knowing I was just talking. In Globe I got a small snack and milkshake and though I slept more on the way to Safford, by the time we arrived home at night, my head had cleared up.
So that's it--the story of my first day of chemotherapy. It was a great learning experience and as I repeat it every week, I'm sure the details will become not only more familiar, but more clear. As always, I had lots of support from text messages and FB posts, which helped keep my anxiety down for the day. But honestly, I wasn't really worried. How can you be worried when you know this is finally the first step in reaching the cure. I focused on that all day. I realize chemotherapy is a mountain in itself, but it is a path I have to climb to reach the cure, so focusing on chemotherapy as the path to the cure makes this very doable.
We thought we'd come to Mesa yesterday, but once I went to have my nails done, my energy was gone and I didn't feel like making the trip. It seems my endurance still maxes out at about an hour and a half no matter what I'm doing. So this morning we left by 6 AM for our first day of chemo.
We started at Preston's signing some paperwork for him to move into a little larger apartment. His current apartment is just over 400 sq ft and I can't tell you the number of times we've all stayed with him along with Mike and Suzie and even Brooklyn. We would fill the place with air mattresses and he never complained. The new place will be twice the size with a den where we'll put an extra bed so that in itselfe will help a ton and I won't feel so bad imposing.
After the paperwork, we arrived at the MD Anderson Cancer Center at 10 AM as scheduled. First I reported to the lab center. A young lady named Jesse took me back to do my labs and once she learned it was my first time getting my port accessed, she was careful to explain every step. We had been told to place a glob of the prescription lidocaine cream on the port area an hour before coming. She said it was really good we did that as she removed the band aide and started poking around the area with her fingers feeling for the bumps that mark the corners of the port. The Bard Power Port is a triangle shape device about the size of a bottle cap and the diameter of a quarter. The top looks like a mini trampoline with a membrane of some kind stretched over it. It is a self-sealing silicon septum so after a special needle accesses it, it reseals itself. Under the septum (trampoline) is a small basin. On the top of the port, each corner has bumps called Palpation Points on the rim of the port so the person accessing it can absolutely feel all edges of the port and determine the positioning. The port is surgically inserted under my skin by my left clavicle bone with nothing sticking out of the skin. The trampoline-like membrane is attached to a sealed basin which has a long catheter running out of it and is inserted into one of my large central veins that goes to my heart. This way medications or fluids can be delivered directly to my blood stream, and blood samples can be taken from my blood stream with no need to have repeated sticks in my wrist and veins.
Jesse spent time pushing on the port making sure she had a good handle on the positioning of it. Then she brought out the supplies, which included a mask for her and I to wear because this was a sterile procedure. She started by cleaning the skin with Chloraprep which was this cool sponge on a wand she punctured that contained antiseptic which fed into the attached sponge. It was like one of those dish soap scrubbers that has soap in the handle that comes out the sponge once you start rubbing the dishes. She then put on a special solution around the area so the tape would come off easily later. She sprayed a freeze antiseptic spray on the area right on top of the port for 10 seconds which also helped numb the area. Then she inserted the PowerLoc needle or what she called a Huber needle, which is basically a the special curved needle that won't hurt the port. I didn't even feel a pinch when the needle when in. "That doesn't feel right," she said and quickly made an adjustment saying "there we go." This made me realize experience is needed to access the port. She confirmed it takes doing it a hundred times or so to really get a good feel when it's right. I was glad to have someone who could recognized that. She tested it by making sure it could pull blood then rinsed it with some saline.
She told me my orders were for a CBC which was a Complete Blood Count screening and a Hepatic Function Pannel for the Liver. The blood count was mainly so they could watch my red blood cells, my white blood cells and my platelets. The liver screen is to make sure my liver isn't being hurt throughout the treatment. Once she pulled the tubes of blood out of the port, she flushed the port with two vials of saline and did what they call a Heparin lock on the port, which basically means they fill the port with Heparin to keep it from clotting. She finished by covering the whole area with clear cellophane band aide called Tegaderm which sealed around the edges and made a sterile pocket type environment so just the tubing came out.
From there we headed to the second floor. Last week the clinic had given me a large section to read on chemotherapy so Michelle, Dr. C's assistant, wanted to meet with us to answer questions we had after reading the material. Of course, I had a ton. She carefully listened and answered each one. I started with Greg's big questions, "Am I for sure going to lose my hair? Some of the literature said thinning?" I knew the answer to that, but we were both hoping it had changed. It hadn't. She confirmed my hair would for sure fall out. We went through a serious of about 10 more questions and Michelle was able to carefully explain them all but one. "What stage am I?" Because staging depended on the last pathology report as well as the first, we had never been clearly told. We think Dr. Matt might have said Stage 3A, but we weren't positive. And it's not that it matters so much, I just really wanted to know. Michelle said she would research that and get back to us for sure.
Even though it was getting close to time to make the dreaded rise to the 3rd floor, I wanted pictures with everyone before I lost my hair. They were all so accommodating. As they came in, I told them about my Pretty in Pink party and they were all so excited. We got a picture with Michelle and Lisa, assistance and nurse to Dr. C. They tracked down Dr. Byrum and Melissa, so I got a picture with them. Even Dr. C stopped in and took a picture. And we got pictures with Adrianna, my nurse navigator, and the two sweetest nurses there, Tia and Betsy. I was so happy and that meant the world to me. The only one we missed was Dr. Matt because he was in surgery so we'll have to find a way to photoshop him in.
That was it. There was no more avoiding. It was noon so we were already technically late to infusion, but they take you when you get there. We walked down the long 2nd floor hallway past all the empty chairs to the elevator. I didn't want to push that button. From the beginning I said I would never need to go to the 3rd floor, but here I was. I stood in the elevator for a few seconds staring at the button. Greg thought he pushed it but it never lite up so we found ourselves down on floor one--the perfect chance to escape, but I didn't, of course. Instead, I reached over and pressed it--floor 3--then held my breathe as we ascended to the top floor. The elevator doors opened and I sighed a breath of relief. It looked just like the second floor but different colors. I don't know what I was expecting. There was the same long waiting area looking out over the long windows in the courtyard that was now under construction for their five story tower expansion. There were what seemed like hundreds of chairs filled with very few people. I went to the checkin desk just like I did on floor two. A nice lady named Donna greeted me. "I'm a newbie," I admitted. "This is my first time to the third floor." I told her my story of my first day there with Dale the volunteer and how I didn't even know what "the infusion floor" meant. She laughed. She said they were all nice up there and I would be taken good care of. Instead of labels, she put a hospital armband on me explaining they want to make absolute sure they are administering the correct drugs to the correct person. I asked her if they had water back there as I was quickly reaching my limit of being active. She said yes they had water and juice and would even serve me lunch. Wow, you can't beat that!
We sat down in two of those empty chairs waiting to be called back, which didn't take long. The aid escorted us back to the center area of the building where, on the second floor the exam rooms are located. On floor three, it's a large open area all the way to the windows on the other side of the building, but it is divided by low cubicles. It was really nice. There were private rooms with beds on the wall against the waiting area if you didn't feel good and wanted to lay down to receive your treatment. Then the rest of the area was filled with cubicles each with a comfortable looking recliner and a chair. A nurse sat at the end between the two cubicles so it looked like a 2:1 ratio of care. They lead me to the best seat in the house--by the window overlooking the parking lot--and said there was no guarantee I could get this seat every time, then laughed. Unfortunately Greg's seat wasn't near as comfortable as mine. Cheryl was my nurse and I explained this was my first time, so she said she would explain every step and she did. She was great.
It is up to the nurse to read the lab work and do the calculations for the chemo that is ordered. They calculate your weight, height and body mass along with your lab results to determine how much of the doctor-ordered medicines you will receive. After they do the calculation, a second nurse does it as well to check accuracy. Then they order the medicine from the pharmacist who also looks over the calculations. First there are three pre medications. Dexamethasone is an anti-inflammatory and immunosuppressant steroid that helps prevent reactions. In addition, I would receive Benadryl to help prevent reactions and finally Pepcid to help with stomach irritation. They infuse all of those in within 15 minutes. Benadryl usually knocks me out when I take it at home, which is why I rarely take it. This was even more potent. It didn't take long before the room started spinning and I became "drunk" as though I had had one too many margarita's. I was trying to stay focused because the building Chaplin had come by. He recognized me and while he wasn't the hospital Chaplin we had talked to in the hospital, he had come to see me when I was less conscious. I enjoyed talking to him and especially praying with him, but I was glad when he left so I could tell the nurse of my crazy head. When I did, she said I should not be feeling that way. She went to check with someone and returned saying it was probably because we put the Benadryl in too quickly but it would be okay. There is a 30 minute wait before they start the chemo drug, Taxol. During this time Cheryl carefully explained the known side effects and when I should call the clinic. Again, she did a great job.
Finally it was time. The pharmacist brought out the Taxol and we were started. I was so glad because I could barely stay awake by then. It was supposed to take an hour from here. They brought me a warm blanket and I was out. My spinning head forced me to slept. I didn't sleep too long though as I woke up when my left hand felt tingly and funny. It was tingly and numb in my ring and pinky fingers a down my hand and wrist. When I asked the nurse about it, she stopped the infusion immediately. She explained that was a reaction and called Dr. C. By the time Dr. C called her back, the tingling had gotten better. She started the infusion on half the speed this time. When I tolerated that for a bit, she increased it back to full speed. Almost immediately my feet and legs went numb. Following Dr. C's orders, she reduced it back to half speed and gave me some Ativan--great, another sleepy drug. The tingling mostly went away. She explained that my infusions will probably have to take longer because of my reactions. Instead of planning 2.5 hours, we should plan 3.5 to 4 hours.
When we were finally finished, she removed the tape and needle accessing my port after doing the same flush routine they did downstairs at the lab. When I stood up, I was very wobbly so she and Greg both insisted on a wheelchair to take me downstairs. I hated that. But that was it. We were in the car and on the way home. I crashed immediately having to forgo my visit with my grandma and Aunt Mary, though I vaguely remember telling Greg to take me there and him saying okay knowing I was just talking. In Globe I got a small snack and milkshake and though I slept more on the way to Safford, by the time we arrived home at night, my head had cleared up.
So that's it--the story of my first day of chemotherapy. It was a great learning experience and as I repeat it every week, I'm sure the details will become not only more familiar, but more clear. As always, I had lots of support from text messages and FB posts, which helped keep my anxiety down for the day. But honestly, I wasn't really worried. How can you be worried when you know this is finally the first step in reaching the cure. I focused on that all day. I realize chemotherapy is a mountain in itself, but it is a path I have to climb to reach the cure, so focusing on chemotherapy as the path to the cure makes this very doable.
Tuesday, January 29, 2013
36 Hours to Chemo Week One..............
1/29/13--Tuesday--Day 108--Learning How to Get Well
I'm about 36 hours out from receiving my first chemotherapy treatment. I'm trying not to let it get to my head--the idea of poisons going into my body. At least it seems like it will be quick, only an hour or so. Again, the unknown is more intimidating so I'm sure once I go through the process, make that dreaded trip to the third floor, the infusion floor, it will get easier.
I'm not sure how easy accessing my port will be. I know they accessed it while I was in the hospital a few days after surgery moving my IV from my arm to the port. I was pretty out of it so I don't really remember when they did it. When I left the hospital, they gave me a numbing cream to put on my port an hour prior to going in to the lab. I wonder if that means it is painful when they access it?
Recovery continues to be progressing, but slowly. Last Tuesday and Wednesday I was so sore and so tired of being so sore and I hurt so much that I was just completely frustrated. After Thursday, I seemed to turn the corner. Once the drain tube came out, my mobility improved a ton. I could shower by myself and even blow dry my hair. I am now getting out of the recliners and out of bed without assistance. Greg still gives me shots, but other than that, I am back to being independent, other than needing help lifting anything. I still have odd fever spikes. On Sunday afternoon I went for my walk--thank goodness Greg and my dad decided to go that time--and got super sick before I returned home. Hanging on to Greg, I made it home, but the fever immediately climbed from 99.9 to 102.5 again. It stayed there for 7 hours, despite meds, and finally broke and didn't return. That twice this crazy fever has shown up and disappeared.
So once I started feeling better last Thursday and Friday, I began thinking maybe I would go back to work a couple of hours this week. Friday I walked twice, one and a half miles the first time and another mile later on. While it hurts, I felt okay. Saturday brought rain. I didn't want to miss my walk, so I asked my dad to take me to Wal-mart where we could walk and get a few groceries. Hmmm, Wal-mart on Saturday in a small town--what was I thinking? I saw so many people who were so glad to see me up and about. It was super nice, BUT, before I knew it, I started sweating and my ears started ringing and I felt just awful. I had to go sit up front while my dad checked us out. At that point it dawned on me that it isn't the distance, it's the time. In Wal-mart, I was up walking and talking for 1.5 hours. When I walk, I'm only out 30 to 45 minutes. And that's when I realized I just don't have any endurance. Of course I came home mad. I should be able to do this. I should be better than this. But in the end, the important lesson was that there is no way my body is up to returning to work, no matter how mad I get.
As I laid in bed one night, a few thoughts came to me. First, when I met with Dr. Cianfrocca on Thursday, I thought she would overwhelm me with information about this next chemotherapy phase. There is so much to learn. What should I be eating? How susceptible will I be to germs and sickness? What will I feel like? Yet she didn't. She explained to process of what she would take me through over the next six months, and answered questions I had, but there wasn't this sudden clear understanding of what I was about to start and how it would affect me. So as I laid there there thinking about all of this, it hit me--Dr. C was going to get me through this, but if I wanted to embrace it, truly learn about it and understand it, or make changes to my lifestyle, it was going to be up to me. No one was going to give me all the answers about cancer or chemotherapy or hold my hand and walk me through this. The information is out there. Friends have sent me books, the cancer center has on line resources and classes available, but that isn't Dr. C's job--it's mine. Then, with all the clarity in the the world, I closed my eyes to go to sleep knowing these days when I am still too weak to return to work need to be spent learning everything I can about this next phase. My priorities suddenly were clear.
I've spent some time dealing with work issues from home, but now it's about learning and cancer, which have to be my priorities. I received the best book in the mail today from my friends Heidi and Troy. It's called Eating Well Through Cancer. I first saw it in the exam room at the cancer center and thought it looked great. I learned great information to help me even for Thursday. So that is my new mission--read and research to understand as much as I possibly can about the chemo phase. Work is going well without me. My team is absolutely incredible and our projects are rolling along. There is not much I could add at this point. I have been out of work for three weeks now, which is longer than I anticipated, but in reality, it's only been two weeks since I was released from the hospital. I've had wonderful visitors, beautiful flowers and super nice gifts. People have cared so much. Now it's time for me to use my energy and stay focused on what really matters, learning how to get well.
I'm about 36 hours out from receiving my first chemotherapy treatment. I'm trying not to let it get to my head--the idea of poisons going into my body. At least it seems like it will be quick, only an hour or so. Again, the unknown is more intimidating so I'm sure once I go through the process, make that dreaded trip to the third floor, the infusion floor, it will get easier.
I'm not sure how easy accessing my port will be. I know they accessed it while I was in the hospital a few days after surgery moving my IV from my arm to the port. I was pretty out of it so I don't really remember when they did it. When I left the hospital, they gave me a numbing cream to put on my port an hour prior to going in to the lab. I wonder if that means it is painful when they access it?
Recovery continues to be progressing, but slowly. Last Tuesday and Wednesday I was so sore and so tired of being so sore and I hurt so much that I was just completely frustrated. After Thursday, I seemed to turn the corner. Once the drain tube came out, my mobility improved a ton. I could shower by myself and even blow dry my hair. I am now getting out of the recliners and out of bed without assistance. Greg still gives me shots, but other than that, I am back to being independent, other than needing help lifting anything. I still have odd fever spikes. On Sunday afternoon I went for my walk--thank goodness Greg and my dad decided to go that time--and got super sick before I returned home. Hanging on to Greg, I made it home, but the fever immediately climbed from 99.9 to 102.5 again. It stayed there for 7 hours, despite meds, and finally broke and didn't return. That twice this crazy fever has shown up and disappeared.
So once I started feeling better last Thursday and Friday, I began thinking maybe I would go back to work a couple of hours this week. Friday I walked twice, one and a half miles the first time and another mile later on. While it hurts, I felt okay. Saturday brought rain. I didn't want to miss my walk, so I asked my dad to take me to Wal-mart where we could walk and get a few groceries. Hmmm, Wal-mart on Saturday in a small town--what was I thinking? I saw so many people who were so glad to see me up and about. It was super nice, BUT, before I knew it, I started sweating and my ears started ringing and I felt just awful. I had to go sit up front while my dad checked us out. At that point it dawned on me that it isn't the distance, it's the time. In Wal-mart, I was up walking and talking for 1.5 hours. When I walk, I'm only out 30 to 45 minutes. And that's when I realized I just don't have any endurance. Of course I came home mad. I should be able to do this. I should be better than this. But in the end, the important lesson was that there is no way my body is up to returning to work, no matter how mad I get.
As I laid in bed one night, a few thoughts came to me. First, when I met with Dr. Cianfrocca on Thursday, I thought she would overwhelm me with information about this next chemotherapy phase. There is so much to learn. What should I be eating? How susceptible will I be to germs and sickness? What will I feel like? Yet she didn't. She explained to process of what she would take me through over the next six months, and answered questions I had, but there wasn't this sudden clear understanding of what I was about to start and how it would affect me. So as I laid there there thinking about all of this, it hit me--Dr. C was going to get me through this, but if I wanted to embrace it, truly learn about it and understand it, or make changes to my lifestyle, it was going to be up to me. No one was going to give me all the answers about cancer or chemotherapy or hold my hand and walk me through this. The information is out there. Friends have sent me books, the cancer center has on line resources and classes available, but that isn't Dr. C's job--it's mine. Then, with all the clarity in the the world, I closed my eyes to go to sleep knowing these days when I am still too weak to return to work need to be spent learning everything I can about this next phase. My priorities suddenly were clear.
I've spent some time dealing with work issues from home, but now it's about learning and cancer, which have to be my priorities. I received the best book in the mail today from my friends Heidi and Troy. It's called Eating Well Through Cancer. I first saw it in the exam room at the cancer center and thought it looked great. I learned great information to help me even for Thursday. So that is my new mission--read and research to understand as much as I possibly can about the chemo phase. Work is going well without me. My team is absolutely incredible and our projects are rolling along. There is not much I could add at this point. I have been out of work for three weeks now, which is longer than I anticipated, but in reality, it's only been two weeks since I was released from the hospital. I've had wonderful visitors, beautiful flowers and super nice gifts. People have cared so much. Now it's time for me to use my energy and stay focused on what really matters, learning how to get well.
Sunday, January 27, 2013
Pretty in Pink Party Feb. 9th ...........
1/27/13--Sunday--Day 106--Join the Susan Support Team!
As clarification, this is for both males and females! We are all affected by and supporters of this fight against Breast Cancer.
Hello wonderful friends and blog followers. I hope you are ready to join the Susan Support Team as we get ready to conquer this next phase of cancer! Here is how you can help, even if you live far away!
On February 9th, I'm having a Pretty in Pink Party beginning at 4 PM at my house. My good friends, Susie Case, Carol Elders, Stephanie Saldana and Suzie Bertetto will be hosting it. If you are a friend from afar or are busy and can't attend in person, here is how I hope you will participate. Do something fun or crazy or outrageous in pink holding a sign saying Susan Support Team or Susan's Pretty in Pink Support Team and take a picture. It can be as simple as wearing a fun pink hat and holding your support sign. Send your picture to me at SusanMLindsey@gmail.com or text them to me on my cell phone before February 7th. Please don't post your pictures here or on FB yet. I'm going to use your pictures first as decorations for the party so you really will be here. Then, your pictures will become part of the video we will be making as I shave my head during the Pretty in Pink Party . For those of you who can attend, thanks to my wonderful hairdresser friend Suzie Bertetto, she will be coloring small chunks of people's hair pink for those who want to. You will also be able to get breast cancer glitter tattoos, pink hair bling, pink nail polish, and other Pink Out kinds of fun. We'll also have all kinds of pink goodies to munch on! During the party, surrounded by fun, family and friends both near and far, I will be cutting and then shaving my hair before chemo gets the chance to take it from me.
Losing my hair has been something I have been really upset about since the beginning of this whole thing. My hair has always been a BIG part of who I am, so I've known losing it is going to be really tough. As I thought about it, I decided I would rather make the choice when to lose it rather then wait until one morning I wake up only to find cancer has stolen it from me. I also decided that if I didn't make it something fun or inspirational, I would bawl through it. And, I wanted Brooklyn and other people who are far away to be able to support me through this. So, as I laid awake one night thinking about how I was going to get through losing my hair, I created my Pretty in Pink Party idea. It may be a total disaster, but it will at least give me something to look forward to instead of dread. And I truly believe if I am surrounded by people who love me, I can get through this.
At the end of the whole thing, Greg will produce a video incorporating all those who joined the Susan's Pretty in Pink Support Team in hopes of being uplifting and encouraging to others who have to face this phase of cancer. So whether you are a supporter from afar, or someone who can attend the party, I hope you join Susan's Pretty in Pink Support Team! Use SusanMLindsey@gmail.com to let me know if you plan to attend or to send pictures by February 7th if possible. You can also let me know you will be attending or participating on the Facebook event page which you can get to by clicking on the Pretty in Pink Party links.
Thanks
As clarification, this is for both males and females! We are all affected by and supporters of this fight against Breast Cancer.
Hello wonderful friends and blog followers. I hope you are ready to join the Susan Support Team as we get ready to conquer this next phase of cancer! Here is how you can help, even if you live far away!
On February 9th, I'm having a Pretty in Pink Party beginning at 4 PM at my house. My good friends, Susie Case, Carol Elders, Stephanie Saldana and Suzie Bertetto will be hosting it. If you are a friend from afar or are busy and can't attend in person, here is how I hope you will participate. Do something fun or crazy or outrageous in pink holding a sign saying Susan Support Team or Susan's Pretty in Pink Support Team and take a picture. It can be as simple as wearing a fun pink hat and holding your support sign. Send your picture to me at SusanMLindsey@gmail.com or text them to me on my cell phone before February 7th. Please don't post your pictures here or on FB yet. I'm going to use your pictures first as decorations for the party so you really will be here. Then, your pictures will become part of the video we will be making as I shave my head during the Pretty in Pink Party . For those of you who can attend, thanks to my wonderful hairdresser friend Suzie Bertetto, she will be coloring small chunks of people's hair pink for those who want to. You will also be able to get breast cancer glitter tattoos, pink hair bling, pink nail polish, and other Pink Out kinds of fun. We'll also have all kinds of pink goodies to munch on! During the party, surrounded by fun, family and friends both near and far, I will be cutting and then shaving my hair before chemo gets the chance to take it from me.
Losing my hair has been something I have been really upset about since the beginning of this whole thing. My hair has always been a BIG part of who I am, so I've known losing it is going to be really tough. As I thought about it, I decided I would rather make the choice when to lose it rather then wait until one morning I wake up only to find cancer has stolen it from me. I also decided that if I didn't make it something fun or inspirational, I would bawl through it. And, I wanted Brooklyn and other people who are far away to be able to support me through this. So, as I laid awake one night thinking about how I was going to get through losing my hair, I created my Pretty in Pink Party idea. It may be a total disaster, but it will at least give me something to look forward to instead of dread. And I truly believe if I am surrounded by people who love me, I can get through this.
At the end of the whole thing, Greg will produce a video incorporating all those who joined the Susan's Pretty in Pink Support Team in hopes of being uplifting and encouraging to others who have to face this phase of cancer. So whether you are a supporter from afar, or someone who can attend the party, I hope you join Susan's Pretty in Pink Support Team! Use SusanMLindsey@gmail.com to let me know if you plan to attend or to send pictures by February 7th if possible. You can also let me know you will be attending or participating on the Facebook event page which you can get to by clicking on the Pretty in Pink Party links.
Thanks
Thursday, January 24, 2013
The Road to Full Recovery Is Finally Laid.......
1/23/13--Thursday--103 days--I'll Put One Foot in Front of the Other to Get Through This.
We woke earlier than our alarm this morning, probably because we were both a little anxious about the trip today. My post op appointments are today in Mesa. Showering and getting ready takes quite a bit more time right now because Greg has to help me with so much. I also wanted to make some eggs since I have no appetite and the thought of fast food makes me even more nausious.
I was taking small car rides trying to get used to the bumps, but haven't felt up to it since the day I got so sick and after I started walking. I snuggled into the passenger's seat surrounding myself with a pillow to support my arm made by a teacher friend, Wanda Evans, my trusted breast cancer blanket from Carol, a small travel blanket tucked into my stomach to hold it more secure, and wrapped all together with the snuggley football blanket Suzie Bertetto made for Greg that I've stolen. I was nervous leaving because we couldn't find the nausea pills we had used to make the trip home after the last two surgeries. They must have been left in the truck.
I had slept six hours and my bundle wrapping seemed to work well as the bumps weren't hurting near as much as they had before. In fact, I was actually feeling better than I have since the day of surgery. We made the trip with only a few ouches.
We saw Leona first. She taught us how to massage the arm to help it drain and prevent Lymphedema from happening. She also took measurements of movement. I felt a much better sense of what I could be doing once the drain comes out. From there we saw Dr. Matt. I felt a huge relief after he did a pelvic exam and said things look good and the leakage isn't from the vagina. He ordered labs to check for a bladder infection and said it may just be my bladder is in shock and needs some exercising. He confirmed all of the fatigue was normal, the pain by the mesh was normal, and even my crying spell was normal. My body is, after all, making huge adjustments right now, he said.
By now I was excited by how much better I was feeling. Here I had made the three hour trip over and undressed and dressed three times since waking up. It was definitely one of my best days yet. After Dr Matt left, we saw Byrum. She pulled all of the Steristrips off and said the wounds looked great. She loved that I had been walking a mile a day. They gave me an abdominal binder which should help me walk a little faster. She said she felt I could start chemo at any time. She also said I could go back to work when I felt like it. I won't see her for three months now. I thanked her for all of her work and help on my case. After she left, her assistant snipped the stitches around my drain tube and pulled it out. It was such a relief to have that thing out. It had become so sensitive. She also snipped a stitch by my port that had surfaced some.
Next we were off to see Dr. C and her assistant Michelle. "Well you're finally back. No more avoiding this with major surgeries and complications now," she laughed. She agreed with Byrum saying I could start chemotherapy as early as next week and I needed to start it at least within the next couple of weeks. Wow, next week! We never thought of it that fast. I guess we could start it next week. "Would I have fewer side effects if I waited until I healed more in a few weeks," I asked? "Nope. It makes no difference," she assured us. She explained that this chemo is the lighter one given weekly and really doesn't have a lot of bad side effects. "Wow, next week," I kept thinking. Why not? Why would we wait? Let's get this thing going. I'm sick of waiting and I finally have a chance to take some control back over my life. That's all it took and everything started moving. She explained that we would see Michelle next week and start labs and the first chemo. Then we would come each Thursday and do labs and chemo and would see her on the fourth week. We would continue to come for the following four weeks doing labs and chemo and then see Michelle again. Then we would come each week for the next four weeks and see her again. They explained that this first phase of chemo would take just over an hour to administer so plan two and a half with labs. At the end if this 12 week phase would be the start of the next phase which is a stronger chemo, but only given once every three weeks for the next three months.
I quickly started counting. Weekly chemo would take us through April 18th. Every three weeks chemo would take us to the end of June. A couple of weeks off before radiation would put us moving here at the end of July and finishing with this whole ugly cancer business by the end of August! Wow the thought was almost unbelievable. Was that truly a light at the end of the tunnel? Was there finally a plan to conquer this?
They left and sent in the pharmacist, Mike. He explained all of the different possible side effects, but they were really minimal other than the hair loss of course. Bone achenes and fatigue were the most common ones. Nausea was less common with this form of chemo. He and Dr. C both seemed to really minimize the effects of this first three month phase. At the same time, they both said we weren't going to discuss the second three month phase until we get to it, leaving Greg and I both thinking there is probably much more to that one. Either way, this is something we have to do so it really doesn't make a difference. I think Greg started to become overwhelmed. I was cramping quite a bit by then so we were both ready to leave. They gave us a binder full of information on chemo to read, my note to return back to work when I felt up to it, and reminded me to go to the lab to do the bladder infection test.
Before leaving, Lisa, another assistant came in and outlined all of the appointments coming up on the first four week period including a final follow up with Dr. Matt. Then we were finally free to leave. After a quick stop at the lab we were headed to have lunch with Preston. I was cramping a ton but really wanted to keep going since it was the first day I had felt this close to normal. After lunch and two more stops we headed home. On the road Dr. Byrum called reporting the labs showed no bladder infection, thank goodness. Now I just have to exercise everything back into condition. The scheduler also called and scheduled all of the appointments for doctors and labs and chemo through the end of February so it is all set.
There is a lot to process, a lot to prepare for, and a lot to figure out. If I have this good of a day tomorrow and over the weekend, I may try to go back to work at least half days next week. I have lots of massages and exercises I need to do on my arm and my abdomen. And most importantly I have to find enough energy to keep walking and build my strength and endurance back up. Dr. C said walking through the chemo will be very important as well so I just have to make sure that stays a priority. So for now we'll see how tonight and tomorrow goes after this long trip. Knowing its okay to rub and massage my incisions and my abdomen may help this cramping go away. I know one thing for sure. After all of this pain, I am SO glad to be moving on to the next phase where at least I can work through the pain. And the most encouraging and uplifting thing of all is there is finally a path to full recovery laid. That alone will help me keep putting one foot in front of the other as I move through this.
We woke earlier than our alarm this morning, probably because we were both a little anxious about the trip today. My post op appointments are today in Mesa. Showering and getting ready takes quite a bit more time right now because Greg has to help me with so much. I also wanted to make some eggs since I have no appetite and the thought of fast food makes me even more nausious.
I was taking small car rides trying to get used to the bumps, but haven't felt up to it since the day I got so sick and after I started walking. I snuggled into the passenger's seat surrounding myself with a pillow to support my arm made by a teacher friend, Wanda Evans, my trusted breast cancer blanket from Carol, a small travel blanket tucked into my stomach to hold it more secure, and wrapped all together with the snuggley football blanket Suzie Bertetto made for Greg that I've stolen. I was nervous leaving because we couldn't find the nausea pills we had used to make the trip home after the last two surgeries. They must have been left in the truck.
I had slept six hours and my bundle wrapping seemed to work well as the bumps weren't hurting near as much as they had before. In fact, I was actually feeling better than I have since the day of surgery. We made the trip with only a few ouches.
We saw Leona first. She taught us how to massage the arm to help it drain and prevent Lymphedema from happening. She also took measurements of movement. I felt a much better sense of what I could be doing once the drain comes out. From there we saw Dr. Matt. I felt a huge relief after he did a pelvic exam and said things look good and the leakage isn't from the vagina. He ordered labs to check for a bladder infection and said it may just be my bladder is in shock and needs some exercising. He confirmed all of the fatigue was normal, the pain by the mesh was normal, and even my crying spell was normal. My body is, after all, making huge adjustments right now, he said.
By now I was excited by how much better I was feeling. Here I had made the three hour trip over and undressed and dressed three times since waking up. It was definitely one of my best days yet. After Dr Matt left, we saw Byrum. She pulled all of the Steristrips off and said the wounds looked great. She loved that I had been walking a mile a day. They gave me an abdominal binder which should help me walk a little faster. She said she felt I could start chemo at any time. She also said I could go back to work when I felt like it. I won't see her for three months now. I thanked her for all of her work and help on my case. After she left, her assistant snipped the stitches around my drain tube and pulled it out. It was such a relief to have that thing out. It had become so sensitive. She also snipped a stitch by my port that had surfaced some.
Next we were off to see Dr. C and her assistant Michelle. "Well you're finally back. No more avoiding this with major surgeries and complications now," she laughed. She agreed with Byrum saying I could start chemotherapy as early as next week and I needed to start it at least within the next couple of weeks. Wow, next week! We never thought of it that fast. I guess we could start it next week. "Would I have fewer side effects if I waited until I healed more in a few weeks," I asked? "Nope. It makes no difference," she assured us. She explained that this chemo is the lighter one given weekly and really doesn't have a lot of bad side effects. "Wow, next week," I kept thinking. Why not? Why would we wait? Let's get this thing going. I'm sick of waiting and I finally have a chance to take some control back over my life. That's all it took and everything started moving. She explained that we would see Michelle next week and start labs and the first chemo. Then we would come each Thursday and do labs and chemo and would see her on the fourth week. We would continue to come for the following four weeks doing labs and chemo and then see Michelle again. Then we would come each week for the next four weeks and see her again. They explained that this first phase of chemo would take just over an hour to administer so plan two and a half with labs. At the end if this 12 week phase would be the start of the next phase which is a stronger chemo, but only given once every three weeks for the next three months.
I quickly started counting. Weekly chemo would take us through April 18th. Every three weeks chemo would take us to the end of June. A couple of weeks off before radiation would put us moving here at the end of July and finishing with this whole ugly cancer business by the end of August! Wow the thought was almost unbelievable. Was that truly a light at the end of the tunnel? Was there finally a plan to conquer this?
They left and sent in the pharmacist, Mike. He explained all of the different possible side effects, but they were really minimal other than the hair loss of course. Bone achenes and fatigue were the most common ones. Nausea was less common with this form of chemo. He and Dr. C both seemed to really minimize the effects of this first three month phase. At the same time, they both said we weren't going to discuss the second three month phase until we get to it, leaving Greg and I both thinking there is probably much more to that one. Either way, this is something we have to do so it really doesn't make a difference. I think Greg started to become overwhelmed. I was cramping quite a bit by then so we were both ready to leave. They gave us a binder full of information on chemo to read, my note to return back to work when I felt up to it, and reminded me to go to the lab to do the bladder infection test.
Before leaving, Lisa, another assistant came in and outlined all of the appointments coming up on the first four week period including a final follow up with Dr. Matt. Then we were finally free to leave. After a quick stop at the lab we were headed to have lunch with Preston. I was cramping a ton but really wanted to keep going since it was the first day I had felt this close to normal. After lunch and two more stops we headed home. On the road Dr. Byrum called reporting the labs showed no bladder infection, thank goodness. Now I just have to exercise everything back into condition. The scheduler also called and scheduled all of the appointments for doctors and labs and chemo through the end of February so it is all set.
There is a lot to process, a lot to prepare for, and a lot to figure out. If I have this good of a day tomorrow and over the weekend, I may try to go back to work at least half days next week. I have lots of massages and exercises I need to do on my arm and my abdomen. And most importantly I have to find enough energy to keep walking and build my strength and endurance back up. Dr. C said walking through the chemo will be very important as well so I just have to make sure that stays a priority. So for now we'll see how tonight and tomorrow goes after this long trip. Knowing its okay to rub and massage my incisions and my abdomen may help this cramping go away. I know one thing for sure. After all of this pain, I am SO glad to be moving on to the next phase where at least I can work through the pain. And the most encouraging and uplifting thing of all is there is finally a path to full recovery laid. That alone will help me keep putting one foot in front of the other as I move through this.
Wednesday, January 23, 2013
Will I Ever Feel Better Again?..........
1/23/13--Wednesday--Day 102--"I'm going to get better. I trust God."
It is now 38 days after the first surgery, which I felt fine after and was back to work three days later. It's 16 days after the second surgery, which was really big and hurt, but I was walking 1.5 miles at a fast pace four days later. But 11 days after the third surgery, I feel worse than I ever have in my life. If only the bowel hernia hadn't happened, I think I would be well on the road to recovery. Instead, I truly feel just horrible.
Movement and recovery has been incredibly slow. The best comparison I can give is it feels like the worst flu you've ever had, but without the ache. My head is cloudy and groggy, even though I'm not taking pain pills. I don't really feel like doing anything--hence, there have been no blog updates. I don't have a specific pain, so I don't take pain pills. You wouldn't take a pain pill when you have the flu. My stomach and bowels are very, very, very angry so the best relief is laying in the recliner couch stretched out--thank goodness we bought these electric reclining couches in October. My insides gurgle and growl and the core of my body is so sore that movement is just exhausting. One day the pains contracted and intensified just like labor pains and I did end up taking a pain pill. It was seven days after surgery and I hadn't had much of a bowel movement since the surgery so I took a laxative, which the doctors said I might need to. That night, what felt as intense as a contractions hit and for about 30 to 45 seconds, I would have to breath through the intense pain as my intestines or bowels or stomach or something contracted. I even had lower back pain contractions--it was ridiculous. Thank goodness within about 10 hours of the most miserable night of my life, everything started emptying out, but my intestines and bowels remained sensitive, contracting, and angry for the next 15 hours. I still felt better getting all of that crap out of me though.
I have been chilling and going through freezing spells since I came home. That is likely due to the three shots a day of Hepburn Greg gives me. Staying in a jacket and under an electric blanket topped with two additional thick blankets still sometimes doesn't cut the chill. A couple of days ago I got so cold, even though I was under all three of my blankets, I asked Greg to come blow dry my feet. He kindly obliged. The heat hitting my feet instantly made goosebumps bubble up my spine and fill my body, which brought me to tears as my feet seemed to be the thermostate for the rest of my body. After four or five minutes with the blow dryer, Greg decided to bring in his space heater and set it on high pointed right at my feet and up my blankets. It ran full blast for three hours before I warmed up. Finally I was warm. As I started removing the blankets, Greg said I looked flush. After being out of the blankets for almost an hour, I felt just awful once again. I started crying feeling completely hopeless. I decided to take my temperature. It was 102.5. I took a couple of Advil, which did nothing. After talking to Diane, our friend who is a nurse, we called the doctor. Dr. Byrum didn't like that high of a fever, but she also didn't want me to go to emergency if we could help it. I had no other signs--no unusually swelling, bleeding, puss, nothing. With all the sickness in the ER's, she was afraid I would catch something after spending six or seven hours there. They would probably want to run a CAT scan and send it to her. She recommend I try a pain pill or Tylenol and see if we could control the fever, get a good night's sleep, then head to the cancer center in Mesa in the morning if I wasn't better. That way they could do lab work and tests there without me being exposed to all the sickness. I took a pain pill at 9:15 and by 1AM the fever finally broke and hasn't returned since. I felt better the next day. Maybe my body just needed to fight something using the fever and my body won, who knows.
Yesterday morning after the night of the fever, I did start this absurd leaking. It feels like when your water breaks when your pregnant. You go to the bathroom, and as soon as you wipe, stand up and move, all this wetness comes out again and there is nothing you can do about it. So after soaking through three pairs of sweats trying to use panty liners, I finally just had to just use a wash cloth, just like I did when my water broke with Brooklyn. I'm not sure if the liquid is coming from my bladder or my vagina but nothing is bloody or smelling. When I called Melissa, she thought it might just be some of the fluids from all of the surgeries finally finding a path of least resistance in which to escape, which is a good thing. She did talk with Dr. Matt who now wants to see me to double check during my Thursday follow-up appointments so that is probably best. Since then, Greg was wonderful and found gigantic maxi-pads which seem to be working to win the battle of containment.
When I first came home, I only had one pair of sweats I could wear. I was so bloated and any pressure on my belly hurt so the only pair of sweats I owned that didn't have elastic was my only attire. Thank goodness for good friends. Carol found me a few more sweats with no elastic just in time for the leaking phase. That has been a life-saver.
The doctor was worried I hadn't been walking enough. I had been making laps in the house from the living room, down the hall into the back room, around the pool table, through Greg's office, the weight room, around the dining room table and back to the living room. I was up to about six laps before the cramps would start. Greg said that was about 70 feet per lap. When the doctor said that wasn't enough, I decided to venture outside. Yesterday I took a half mile walk two different times during the day. Poor Sierra, my dog. She is so excited to go because when I used to walk for exercise, she loved coming. This time she would walk as slow as she possibly could to stay with me and still have to wait for me. "Are we really going to walk this slow?" was what darted out of her eyes every time she stopped to wait for me to catch up. But she happily wagged her tail and stood by my side.
Last night we repeated the whole angry bowel thing again, even though I didn't take a laxative, so I experienced the second worse night so far. Poor Greg has to help me out of bed each time so I feel so badly having to wake him up, but he gladly helps. So by morning I was diarrhea drained once more and feeling completely lethargic. I had some oatmeal and Gatorade trying to replenish my nutrients and not become dehydrated, then felt so yucky I laid in the recliner and slept under my cozy blankets for a couple of hours. Even though I didn't want to, when I woke up, I forced myself outside to walk. This time Sierra and I did 1.08 miles. I have to hold my side with every step so tomorrow I'm going to ask the doctor for an abdominal binder in hopes it will help me hurt less when I walk and I'll be able to walk more.
I have been keeping up on work and personal e-mails. Those have been little shining moments of interaction, but honestly I don't feel like doing much more than that. If I felt just 10% better I would be asking Dr. T if I could work from home, but I'm just not ready. Carol's done an outstanding job stopping by or calling after work a couple of days and talking work stuff, which has made for a great diversion, but not too much. I'm not a TV watcher so I haven't turned on the TV at all except at night when Greg and I watch some of our recorded shows. I can't even imagine surfing through daytime TV garbage. I am hoping my mind will clear up enough to want to read. I have several books people have given me I want to read or study, but I'm not really even ready for that. Hopefully that will come soon.
Everyone has been really helpful and supportive, and I feel so blessed and grateful, despite my negative physical feelings. Sue Bonefas has been coordinating food for us, thank goodness. I have absolutely no appetite. In fact, eating and night times are my most dreaded activities. But I know eating nutritiously will make all the difference in the world so I have forced myself to eat and having good healthy meals has been a God-send.
When we first arrived home, love poured from the house. My team left me a wonderful banner across my front window. My neighbors Kristi and Gayrene had a poster and streamers on the door and a gift bag of goodies inside. Susie Case and Carole Brady decorated the living room with streamers and presents and Brooklyn decorated upstairs with streamers. It was amazing and made me smile after a very long and difficult trip home. Again, I feel so blessed.
And the cards have continued to help me smile and stay as positive as possible. When I first came home, there were three cards that had come in the mail and were waiting on the counter. I purposely decided to wait to open them knowing I might need them more in a few days. After being home a few days, anger started building up inside of me. If that stupid bowel hernia hadn't happened, I could walk without hurting so much. How unfair was all of this! This recovery was so hard and so big and all for what, so I could do chemo! Stupid cancer. It's really hard to hurt this much and not get down, especially when you know you're getting better just to face the huge mountain of chemo. Plus, when you are an A-type personality and are used to being not only busy, but independent, and now you can't even wipe without help, it is very frustrating. So one morning when I was particularly feeling the "poor me's", I took the three cards to my recliner and laid back. The first was great. It was from one of my former yearbook editors who has been so supportive with cards and kind words. The second was a singing card that made me smile from Peggy, my best friend who now lives in Montana. The third I didn't recognize the return label, but figured it was one of our Phoenix group of friends. I opened it and almost cried. It was from my new friend Pam in the imaging center at MD Anderson. It was the Footprints card with the kindest message. And in the card she had tucked a small prayer card with a pin on the top, you know the ones like with crosses or praying hands. Well this pin spoke directly to my heart and soul and sent goosebumps all over my body. In chunky gold block letters was the simple word TRUST. Tears filled my eyes as goosebumps covered my body and I realized, in all my self-pity over the last few days, I had forgotten to TRUST God. He will take care of me. He will stay by me. He will help me as I get through this. All I need to do is TRUST Him.
So today when I woke from my horrible night, I simply repeated over and over, "I'm going to get better. I trust God." And as I slowly made my way back to my house hurting on the last leg of my walk, I repeated over and over, "I'm going to get better. I trust God." This is the hardest thing I've ever done,. My emotions seem to be a wreck and at this point, I don't have any way of knowing if my chemo path is going to be easier, the same or harder, but thank goodness Pam sent me a small gold pin that will help me remember, no matter how painful things get, "I'm going to get better. I trust God."
It is now 38 days after the first surgery, which I felt fine after and was back to work three days later. It's 16 days after the second surgery, which was really big and hurt, but I was walking 1.5 miles at a fast pace four days later. But 11 days after the third surgery, I feel worse than I ever have in my life. If only the bowel hernia hadn't happened, I think I would be well on the road to recovery. Instead, I truly feel just horrible.
Movement and recovery has been incredibly slow. The best comparison I can give is it feels like the worst flu you've ever had, but without the ache. My head is cloudy and groggy, even though I'm not taking pain pills. I don't really feel like doing anything--hence, there have been no blog updates. I don't have a specific pain, so I don't take pain pills. You wouldn't take a pain pill when you have the flu. My stomach and bowels are very, very, very angry so the best relief is laying in the recliner couch stretched out--thank goodness we bought these electric reclining couches in October. My insides gurgle and growl and the core of my body is so sore that movement is just exhausting. One day the pains contracted and intensified just like labor pains and I did end up taking a pain pill. It was seven days after surgery and I hadn't had much of a bowel movement since the surgery so I took a laxative, which the doctors said I might need to. That night, what felt as intense as a contractions hit and for about 30 to 45 seconds, I would have to breath through the intense pain as my intestines or bowels or stomach or something contracted. I even had lower back pain contractions--it was ridiculous. Thank goodness within about 10 hours of the most miserable night of my life, everything started emptying out, but my intestines and bowels remained sensitive, contracting, and angry for the next 15 hours. I still felt better getting all of that crap out of me though.
I have been chilling and going through freezing spells since I came home. That is likely due to the three shots a day of Hepburn Greg gives me. Staying in a jacket and under an electric blanket topped with two additional thick blankets still sometimes doesn't cut the chill. A couple of days ago I got so cold, even though I was under all three of my blankets, I asked Greg to come blow dry my feet. He kindly obliged. The heat hitting my feet instantly made goosebumps bubble up my spine and fill my body, which brought me to tears as my feet seemed to be the thermostate for the rest of my body. After four or five minutes with the blow dryer, Greg decided to bring in his space heater and set it on high pointed right at my feet and up my blankets. It ran full blast for three hours before I warmed up. Finally I was warm. As I started removing the blankets, Greg said I looked flush. After being out of the blankets for almost an hour, I felt just awful once again. I started crying feeling completely hopeless. I decided to take my temperature. It was 102.5. I took a couple of Advil, which did nothing. After talking to Diane, our friend who is a nurse, we called the doctor. Dr. Byrum didn't like that high of a fever, but she also didn't want me to go to emergency if we could help it. I had no other signs--no unusually swelling, bleeding, puss, nothing. With all the sickness in the ER's, she was afraid I would catch something after spending six or seven hours there. They would probably want to run a CAT scan and send it to her. She recommend I try a pain pill or Tylenol and see if we could control the fever, get a good night's sleep, then head to the cancer center in Mesa in the morning if I wasn't better. That way they could do lab work and tests there without me being exposed to all the sickness. I took a pain pill at 9:15 and by 1AM the fever finally broke and hasn't returned since. I felt better the next day. Maybe my body just needed to fight something using the fever and my body won, who knows.
Yesterday morning after the night of the fever, I did start this absurd leaking. It feels like when your water breaks when your pregnant. You go to the bathroom, and as soon as you wipe, stand up and move, all this wetness comes out again and there is nothing you can do about it. So after soaking through three pairs of sweats trying to use panty liners, I finally just had to just use a wash cloth, just like I did when my water broke with Brooklyn. I'm not sure if the liquid is coming from my bladder or my vagina but nothing is bloody or smelling. When I called Melissa, she thought it might just be some of the fluids from all of the surgeries finally finding a path of least resistance in which to escape, which is a good thing. She did talk with Dr. Matt who now wants to see me to double check during my Thursday follow-up appointments so that is probably best. Since then, Greg was wonderful and found gigantic maxi-pads which seem to be working to win the battle of containment.
When I first came home, I only had one pair of sweats I could wear. I was so bloated and any pressure on my belly hurt so the only pair of sweats I owned that didn't have elastic was my only attire. Thank goodness for good friends. Carol found me a few more sweats with no elastic just in time for the leaking phase. That has been a life-saver.
The doctor was worried I hadn't been walking enough. I had been making laps in the house from the living room, down the hall into the back room, around the pool table, through Greg's office, the weight room, around the dining room table and back to the living room. I was up to about six laps before the cramps would start. Greg said that was about 70 feet per lap. When the doctor said that wasn't enough, I decided to venture outside. Yesterday I took a half mile walk two different times during the day. Poor Sierra, my dog. She is so excited to go because when I used to walk for exercise, she loved coming. This time she would walk as slow as she possibly could to stay with me and still have to wait for me. "Are we really going to walk this slow?" was what darted out of her eyes every time she stopped to wait for me to catch up. But she happily wagged her tail and stood by my side.
Last night we repeated the whole angry bowel thing again, even though I didn't take a laxative, so I experienced the second worse night so far. Poor Greg has to help me out of bed each time so I feel so badly having to wake him up, but he gladly helps. So by morning I was diarrhea drained once more and feeling completely lethargic. I had some oatmeal and Gatorade trying to replenish my nutrients and not become dehydrated, then felt so yucky I laid in the recliner and slept under my cozy blankets for a couple of hours. Even though I didn't want to, when I woke up, I forced myself outside to walk. This time Sierra and I did 1.08 miles. I have to hold my side with every step so tomorrow I'm going to ask the doctor for an abdominal binder in hopes it will help me hurt less when I walk and I'll be able to walk more.
I have been keeping up on work and personal e-mails. Those have been little shining moments of interaction, but honestly I don't feel like doing much more than that. If I felt just 10% better I would be asking Dr. T if I could work from home, but I'm just not ready. Carol's done an outstanding job stopping by or calling after work a couple of days and talking work stuff, which has made for a great diversion, but not too much. I'm not a TV watcher so I haven't turned on the TV at all except at night when Greg and I watch some of our recorded shows. I can't even imagine surfing through daytime TV garbage. I am hoping my mind will clear up enough to want to read. I have several books people have given me I want to read or study, but I'm not really even ready for that. Hopefully that will come soon.
Everyone has been really helpful and supportive, and I feel so blessed and grateful, despite my negative physical feelings. Sue Bonefas has been coordinating food for us, thank goodness. I have absolutely no appetite. In fact, eating and night times are my most dreaded activities. But I know eating nutritiously will make all the difference in the world so I have forced myself to eat and having good healthy meals has been a God-send.
When we first arrived home, love poured from the house. My team left me a wonderful banner across my front window. My neighbors Kristi and Gayrene had a poster and streamers on the door and a gift bag of goodies inside. Susie Case and Carole Brady decorated the living room with streamers and presents and Brooklyn decorated upstairs with streamers. It was amazing and made me smile after a very long and difficult trip home. Again, I feel so blessed.
And the cards have continued to help me smile and stay as positive as possible. When I first came home, there were three cards that had come in the mail and were waiting on the counter. I purposely decided to wait to open them knowing I might need them more in a few days. After being home a few days, anger started building up inside of me. If that stupid bowel hernia hadn't happened, I could walk without hurting so much. How unfair was all of this! This recovery was so hard and so big and all for what, so I could do chemo! Stupid cancer. It's really hard to hurt this much and not get down, especially when you know you're getting better just to face the huge mountain of chemo. Plus, when you are an A-type personality and are used to being not only busy, but independent, and now you can't even wipe without help, it is very frustrating. So one morning when I was particularly feeling the "poor me's", I took the three cards to my recliner and laid back. The first was great. It was from one of my former yearbook editors who has been so supportive with cards and kind words. The second was a singing card that made me smile from Peggy, my best friend who now lives in Montana. The third I didn't recognize the return label, but figured it was one of our Phoenix group of friends. I opened it and almost cried. It was from my new friend Pam in the imaging center at MD Anderson. It was the Footprints card with the kindest message. And in the card she had tucked a small prayer card with a pin on the top, you know the ones like with crosses or praying hands. Well this pin spoke directly to my heart and soul and sent goosebumps all over my body. In chunky gold block letters was the simple word TRUST. Tears filled my eyes as goosebumps covered my body and I realized, in all my self-pity over the last few days, I had forgotten to TRUST God. He will take care of me. He will stay by me. He will help me as I get through this. All I need to do is TRUST Him.
So today when I woke from my horrible night, I simply repeated over and over, "I'm going to get better. I trust God." And as I slowly made my way back to my house hurting on the last leg of my walk, I repeated over and over, "I'm going to get better. I trust God." This is the hardest thing I've ever done,. My emotions seem to be a wreck and at this point, I don't have any way of knowing if my chemo path is going to be easier, the same or harder, but thank goodness Pam sent me a small gold pin that will help me remember, no matter how painful things get, "I'm going to get better. I trust God."
Sunday, January 20, 2013
Hello World.........
1/19/13--Saturday--Day 98--Nothing is Predictable and You Just Never Know!
Wow, I've been absent from the world for the last 12 days since I went into surgery Monday, Jan. 7th. What was supposed to be a one night surgery turned in to two surgeries, seven different procedures, and an eight-day hospital stay. Through it all, the good news is that the pathology reports on the abdominal tumor and the axillary lymph nodes were more favorable than not, and in the long war, that will make the biggest difference.
I am so thankful Greg put information on the blog so many of you could keep updated and I apologize for not blogging before now. I know his last post left many of you hanging, but we both just had so much fighting to do and honestly, until today, I just wasn't up to thinking about all of this. I'll try not to repeat what Greg has posted, but simply relate some of the crazy, mixed up details from the patient view.
On the day of the surgery, we knew having a 1PM surgery time would be somewhat disadvantageous, but we never imagined a nine hour surgery would make me the last one out of OR. I kept my nerves down going into surgery by handing out the Kisses of Hope goodie bags we had made the previous day. This time we made 45 goodie bags so we would have enough for the surgery staff and for the nurses when I stayed the night. I started with my friend, Pam, over in the imaging center. She has been sweet from the start and I hadn't updated her on things and really wanted her to know I was going in for more surgery. From there we went to admitting and then straight up to the now too familiar second floor surgery checkin desk. I recognized the receptionist and she recognized me as I greeted her with a smile and a bag and she promised to send back my other favorite guy receptionist to see me when he came in at noon. My dad, Greg, Brookie, Mike and Suzie and I settled in to tables far down the side at the end since they were close to recharging power and we knew we were in for a long stay. I was only there for a short time before they took me back with Greg to the preop area where I was placed in bed two, the same as the first time.
For the next hour, nurses bustled about getting everything ready. The nurse who came to start my IV recognized me questioning why I was back. She has this great foreign accent and we had talked a bunch last time. She was thrilled to get her goodie bag and I sent an extra for her two kids at home. As the nurses worked, the doctors filtered in and out starting with Dr. Byrum and Melissa followed by Dr. Matt then two anesthesiologists. Each left with a Kisses of Hope goodie bag and a smile promising not to get on a sugar high before surgery. We thought we were ahead of scheduled, but it ended up that the surgery room wasn't ready so the wait started. That was okay because it gave time for friends and family to filter in and out. My friend Diane was the first to sneak back. She had taken off work early to spend the day with Greg knowing he would need support through the long waiting period. The receptionist I was waiting to see came back for his hug and I gave him a goodie bag and from then on, we were set for getting people back to see me. He brought Brookie and my dad back. Soon Preston made it just in time to spend some time there and Mike snuck back as well. About 30 minutes behind schedule, we started as the anesthesiologist wheeled me away and I faded into a comfortable zone. I barely remember the operating room and them positioning my arms before going under.
Unlike the first surgery, I never remember waking up in the recovery room. My first memory is being wheeled out of recovery and then into a room with a clock above the door. I was so confused because the clock said 11:30. "What in the world could have possibly happened for it to be that late," was all I could think and ask about. As Greg reported in his blog post, the tumor was what is called a borderline tumor. Later we would learn a borderline tumor doesn't mean it may or many not be cancer, but rather it is an abnormal group of cells which make up a type of tumor. It can almost be compared to DCIS in the breast in that it has not yet spread to deeper tissue or become full cancer. However, without taking the additional pelvic and abdominal lymph nodes, there is no way of knowing if other types of ovarian cancers were present, so that is what the doctor did, which greatly extended the surgery time.
Quickly reviewing, I don't remember much more of Monday night other than I had no feeling in my first two fingers on my right hand and was scared my RSD had surfaced. Tuesday morning, I was happy to eat a little and not so happy when they made me walk, but everything seemed to be coming along normal. We knew I had to stay an extra night just because the surgery ended so late on Monday. The position of my arms during the long surgery was being blamed for the numbness. I guess they do the surgery with me tilted upside down which gets a lot of things out of the way when they are working laparoscopically. Eight hours of my hands bent over affected the media nerve, which is the same nerve affected in carpo tunnel but they assured me my normal feeling would return. My left had was tingly, but not completely asleep like my right, so that would good.
My recovery seemed to be progressing, so Wednesday morning Mike and Suzie headed home which left my dad, Greg, Brookie and Preston being my support team. I had started becoming nauseated Tuesday night, but that is common after surgery and it was quickly relieved with meds. By mid morning on Wednesday, I had no interest in eating or getting up and I went down hill faster than I could tell anyone. I just felt awfully sick and the nausea meds weren't helping. I remember my dad and Greg insisting I had to walk. I had not passed gas yet, which I would learn is a pretty big deal after surgery. I just knew I couldn't get up. I wasn't hurting, I was just so sick to my stomach. I got to the edge of the bed and couldn't speak although I knew I was going to throw up. With my dad on my right and Greg I my left, I stood, and 15 seconds later I puked standing straight up, paused a minute, then did it again. I knew it had hit the floor and splattered but nothing mattered at that moment. My dad tried to make me feel better reminding me when he puked on me in the hospital once. All I knew was I had some relief for the first time, but it was short-lived as it quickly built up again.
The next thing I remember is being wheeled to x-ray and returning to hear something about the x-ray showed my intestines and bowels having an ileus which basically meant having my bowels and intestines touched and moved around during surgery had put them in shock. There was talk of this being a know side effect of abdominal surgery and that I could no longer eat or drink anything until we got the bowels out of this paralyzed state and awake and working, which included no more oral pain meds so I would have to go on morphine. Then I remember Dr. Matt and Melissa both sitting on my bed and explaining they were going to put a tube down my throat to drain the bile in my stomach because if I kept puking, I risked getting pneumonia. I guess they had cleared the room before talking to me. I was loopy, sick and just wanted relief. As quickly as possible, one of them inserted a NG tube into my nose, down my throat and into my stomach. I just remember being there helpless as I puked around the tube as it went down, while crying and wetting myself all at the same time. It didn't matter. Immediately the tube filled with a horrid dark green vial substance that raced out like someone had turned on a hose. The tube hurt in my throat, but I immediate felt relief. They let me swish and spit then cleaned me up. Sometime in the night, a nurse woke me, sprayed some numbing spray in my throat, and I threw up all over again around the tube. I felt completely helpless laying there as the vial substance went everywhere. I was a mess. She was so sweet and somehow we made it into the bathroom to take an impromptu shower which I barely remember before returning to bed and resting for the night.
Thursday the hose in my nose was awful, but I could at least function. I wasn't at all hungry and was told to walk as much as possible. We would leave the room and walk the halls, one person on each side of me and someone following up from behind pushing the IV pole. Thursday afternoon the good news from the pathology reports had arrived. No other cancer had been found in my ovaries, tubes, or uterus and the pelvic and abdominal lymph nodes were clear of cancer as well. Of the 31 axillary lymph nodes Dr. Byrum had taken, only one had a 1 mm tumor but the rest were all clean. The news couldn't be greater! It was gone. All of the cancer that was inside of me had been cut out and the chances of there being more were much lower now. I was happy to hear the news, but still focused on that task at hand, which was to get better.
By Friday Mike and Suzie had returned to help again and we were all working to get me to pass gas. I was tired of this. If walking was what it was going to take, walking it was going to be. I got up every chance I had and walked as quickly as I could. Everyone had trouble keeping up with me as they ran to roll the IV pole behind me, but I knew if I didn't go quickly, I wouldn't make many laps. Each time I wanted 3 laps. We had been keeping track of my laps around the hallways each day. Every 12 feet there was a small foot sticker on the wall and by the end of the day, I had waked 22 laps or what worked out to be a mile and a half with no success of passing gas.
Saturday morning I woke feeling completely sick again and felt myself going down hill quickly once more. Four laps was all I could make as pain had started to set in. Had we walked too much? By noon the doctors decided I needed a CAT scan to see what was going on. They wheeled me down to x-ray once again but this time into the room with the large donut machine. After passing through a time or two, I returned to my room followed shortly by Dr. Matt and Melissa. They said the scan showed portion of my bowel had become knotted and they were going to have to take me back into surgery that day to fix it. Dr. Matt explained that this time it could not be done laparoscopically but they were going to have to open me up. I was disappointed because I knew that would greatly increase my recovery time. We had worked so hard to do all of this laparoscopically so I could get over this and not delay the chemo treatment and now here we were. But I knew things were becoming serious quickly and they needed to do what they needed to do. Within the hour, both doctors had returned. They had talked with Dr. Byrum and she didn't want me opened up. She was coming in to assist and they were going to do the bowel repair laparoscopically. I was relieved.
They quickly wheeled me down to the surgery preop area. It was completely quiet and only one nurse was anywhere to be seen. I told them to put me in preop bed 1 this time since 2 hadn't been so lucky these last two times. Here I was facing a third surgery in five weeks. Wow. This was crazy.
The preop nurse was slow, quiet and super unfriendly so I was glad when the surgical nurse arrived. He was a big burly guy with giant hands and a great attitude. He reassured me he would be with me the whole time and take good care of me. He immediately started pulling the tape off of my NG tube as it kept slipping down and started re-taping it explaining how these young nurses are getting out of school not knowing simple things like a chevron taping method. In the distance I saw Dr. Byrum walk in and I waved. She, Dr. Matt and Melissa came in shortly. I begged them to take the tube out while I was under, but they said it had to stay in until morning when they could make sure everything was working. It was like a ghost hospital with no activity as it was late Saturday afternoon. Diane had made it down in time to stay with Greg again so I said bye to her, Mike & Suzie, Greg and my dad and I was off to my third surgery.
I don't remember anything from waking up Saturday night, but Sunday morning I felt like there was an electric fence inside of my body and it was shocking my entire left side. That was the first true pain I remember feeling through all of this. Dr. Matt and Melissa came in and explained they had put a permanent mesh inside of me, tacked it in place with permanent sutures, and that would keep my bowel from moving into the empty areas where the ovaries and tumor had been. Basically, the tumor removal and hysterectomy had left some big empty space in my abdomen. Somehow a knuckles worth of my bowel had raised up, skinnied it's way through an abdominal suture, and expanded in the big void in my abdomen cutting off bowel circulation. Basically I had a bowel hernia. Wow, really? How complicated was this going to get.
Mike and Greg were eager to get me out of bed but I was sure my body was on fire and I couldn't move. After a little pain medication, they managed to coax me out of bed and as I sat and then stood up, I was sure I was on fire. I made one lap and then went back to bed. Thank goodness by the next walk the pain had either subsided some or I had gotten more used to it. They had taken the NG tube out Sunday morning and I began eating really for the first time in 8 days, other than the little bit of food I had Tuesday morning after surgery. I had never eaten Italian Ice, but it was the best thing I have ever tasted followed by a Popsicle. All day Sunday we waited anxiously for me to pass gas. I knew it was my magical pass out of there. Finally Sunday evening we all celebrated when I finally farted. Then we started making tally marks of each fart and laughed at our new celebrated fart party.
Monday I continued to recover but still had not had a bowel movement. They removed my IV's and I ate and drank in hopes of encouraging one but no luck. We realized I hadn't urinated and an ultra sound revealed a huge build up of liquid inside my bladder. They were going to have to put a catheter in to stimulate my bladder if I didn't go so with a little concentration and a lot of running water, I released what they could account for putting in me since the surgery and removing the catheter Sunday morning. Discharge was planned for Tuesday so by Tuesday afternoon, I was packed up and ready to head home after an 8 day, two surgery hospital stay.
As Greg and Mike packed up what had become our temporary home, I realized just how much support we had had during our stay. The room was covered in flowers and plants from visitors. Besides Mike and Suzie being by our side, my dad spent every day hanging out in the room with me. Brooklyn stayed most of the week and Preston and his girlfriend Yuri were at both surgeries and came time after time. Our friend Jan came daily to keep my spirits up and check on Greg. Our good friends Paul and Diane drove all the way across town day after day to support us and we had visits from our friends Bruce and Margaret as well as my Aunt Mary and my 99 year old grandma who came up twice throughout the week. My sister-in-law Jan came one day to pick up Brookie and take her back to Safford so she could spend a few days packing to return to Idaho. Even a young lady named Kelli who is dating Carson, Jan's stepson, had been following the blog and came to support Greg during the surgery and came back over on one of the bad nights when I was getting the NG tube inserted. My cousin Jennifer was part of Greg's support group the day of surgery, our friend HL Case stopped to see us on his way through Mesa, and a good friend Mitch Callihan came to check in on us. Besides the visitors there was support from afar through cards and flowers like from my Aunt Rita and Uncle George, my good friends Heidi and Troy, and a wonderful unexpected gift and card delivered by Rhonda Sears from teachers at the middle school. Before leaving Safford, my friend Carol made me a fleece blanket with pink ribbons which became the talk of the hospital and my security blanket through all of this as I never let it leave my side other then in the OR. People also kept in touch with Greg through texting like Carol, who passed updates on to everyone at work, my best friends Trina and Peggy, and our neighbors Gayrene and Kristi. Thank goodness people were looking out for Greg especially when I wasn't allowed to eat. Someone finally whisked him away to Texas Roadhouse and got something besides hospital food in him. And I don't know what I would have done without my friend Suzie who would strip down with me in the bathroom to bathe me, wash my hair, and blow dry it giving me some semblance of feeling human. When I had the NG tube in my nose, I looked awful. I had on no makeup, my hair was a mess and I probably even smelled--a condition in which I have never let friends see me. But having friends and family there to support us made none of that matter. I can't tell you how important the love and support was.
We knew this surgery was going to be a challenge. Having a hysterectomy alone is a big deal, but add to that what ended up being a 12 cm tumor removed, pelvic and abdominal lymph node dissections, an axillary lymph node dissection, and my port put in and top it off with a second emergency surgery for a herniated bowel. Whew. We are a long ways from the simple lumpectomy of a DCIS case we thought we were facing back in November. What we've learned is nothing in this crazy stupid thing called cancer is predictable and you just never know.
Wow, I've been absent from the world for the last 12 days since I went into surgery Monday, Jan. 7th. What was supposed to be a one night surgery turned in to two surgeries, seven different procedures, and an eight-day hospital stay. Through it all, the good news is that the pathology reports on the abdominal tumor and the axillary lymph nodes were more favorable than not, and in the long war, that will make the biggest difference.
I am so thankful Greg put information on the blog so many of you could keep updated and I apologize for not blogging before now. I know his last post left many of you hanging, but we both just had so much fighting to do and honestly, until today, I just wasn't up to thinking about all of this. I'll try not to repeat what Greg has posted, but simply relate some of the crazy, mixed up details from the patient view.
On the day of the surgery, we knew having a 1PM surgery time would be somewhat disadvantageous, but we never imagined a nine hour surgery would make me the last one out of OR. I kept my nerves down going into surgery by handing out the Kisses of Hope goodie bags we had made the previous day. This time we made 45 goodie bags so we would have enough for the surgery staff and for the nurses when I stayed the night. I started with my friend, Pam, over in the imaging center. She has been sweet from the start and I hadn't updated her on things and really wanted her to know I was going in for more surgery. From there we went to admitting and then straight up to the now too familiar second floor surgery checkin desk. I recognized the receptionist and she recognized me as I greeted her with a smile and a bag and she promised to send back my other favorite guy receptionist to see me when he came in at noon. My dad, Greg, Brookie, Mike and Suzie and I settled in to tables far down the side at the end since they were close to recharging power and we knew we were in for a long stay. I was only there for a short time before they took me back with Greg to the preop area where I was placed in bed two, the same as the first time.
For the next hour, nurses bustled about getting everything ready. The nurse who came to start my IV recognized me questioning why I was back. She has this great foreign accent and we had talked a bunch last time. She was thrilled to get her goodie bag and I sent an extra for her two kids at home. As the nurses worked, the doctors filtered in and out starting with Dr. Byrum and Melissa followed by Dr. Matt then two anesthesiologists. Each left with a Kisses of Hope goodie bag and a smile promising not to get on a sugar high before surgery. We thought we were ahead of scheduled, but it ended up that the surgery room wasn't ready so the wait started. That was okay because it gave time for friends and family to filter in and out. My friend Diane was the first to sneak back. She had taken off work early to spend the day with Greg knowing he would need support through the long waiting period. The receptionist I was waiting to see came back for his hug and I gave him a goodie bag and from then on, we were set for getting people back to see me. He brought Brookie and my dad back. Soon Preston made it just in time to spend some time there and Mike snuck back as well. About 30 minutes behind schedule, we started as the anesthesiologist wheeled me away and I faded into a comfortable zone. I barely remember the operating room and them positioning my arms before going under.
Unlike the first surgery, I never remember waking up in the recovery room. My first memory is being wheeled out of recovery and then into a room with a clock above the door. I was so confused because the clock said 11:30. "What in the world could have possibly happened for it to be that late," was all I could think and ask about. As Greg reported in his blog post, the tumor was what is called a borderline tumor. Later we would learn a borderline tumor doesn't mean it may or many not be cancer, but rather it is an abnormal group of cells which make up a type of tumor. It can almost be compared to DCIS in the breast in that it has not yet spread to deeper tissue or become full cancer. However, without taking the additional pelvic and abdominal lymph nodes, there is no way of knowing if other types of ovarian cancers were present, so that is what the doctor did, which greatly extended the surgery time.
Quickly reviewing, I don't remember much more of Monday night other than I had no feeling in my first two fingers on my right hand and was scared my RSD had surfaced. Tuesday morning, I was happy to eat a little and not so happy when they made me walk, but everything seemed to be coming along normal. We knew I had to stay an extra night just because the surgery ended so late on Monday. The position of my arms during the long surgery was being blamed for the numbness. I guess they do the surgery with me tilted upside down which gets a lot of things out of the way when they are working laparoscopically. Eight hours of my hands bent over affected the media nerve, which is the same nerve affected in carpo tunnel but they assured me my normal feeling would return. My left had was tingly, but not completely asleep like my right, so that would good.
My recovery seemed to be progressing, so Wednesday morning Mike and Suzie headed home which left my dad, Greg, Brookie and Preston being my support team. I had started becoming nauseated Tuesday night, but that is common after surgery and it was quickly relieved with meds. By mid morning on Wednesday, I had no interest in eating or getting up and I went down hill faster than I could tell anyone. I just felt awfully sick and the nausea meds weren't helping. I remember my dad and Greg insisting I had to walk. I had not passed gas yet, which I would learn is a pretty big deal after surgery. I just knew I couldn't get up. I wasn't hurting, I was just so sick to my stomach. I got to the edge of the bed and couldn't speak although I knew I was going to throw up. With my dad on my right and Greg I my left, I stood, and 15 seconds later I puked standing straight up, paused a minute, then did it again. I knew it had hit the floor and splattered but nothing mattered at that moment. My dad tried to make me feel better reminding me when he puked on me in the hospital once. All I knew was I had some relief for the first time, but it was short-lived as it quickly built up again.
The next thing I remember is being wheeled to x-ray and returning to hear something about the x-ray showed my intestines and bowels having an ileus which basically meant having my bowels and intestines touched and moved around during surgery had put them in shock. There was talk of this being a know side effect of abdominal surgery and that I could no longer eat or drink anything until we got the bowels out of this paralyzed state and awake and working, which included no more oral pain meds so I would have to go on morphine. Then I remember Dr. Matt and Melissa both sitting on my bed and explaining they were going to put a tube down my throat to drain the bile in my stomach because if I kept puking, I risked getting pneumonia. I guess they had cleared the room before talking to me. I was loopy, sick and just wanted relief. As quickly as possible, one of them inserted a NG tube into my nose, down my throat and into my stomach. I just remember being there helpless as I puked around the tube as it went down, while crying and wetting myself all at the same time. It didn't matter. Immediately the tube filled with a horrid dark green vial substance that raced out like someone had turned on a hose. The tube hurt in my throat, but I immediate felt relief. They let me swish and spit then cleaned me up. Sometime in the night, a nurse woke me, sprayed some numbing spray in my throat, and I threw up all over again around the tube. I felt completely helpless laying there as the vial substance went everywhere. I was a mess. She was so sweet and somehow we made it into the bathroom to take an impromptu shower which I barely remember before returning to bed and resting for the night.
Thursday the hose in my nose was awful, but I could at least function. I wasn't at all hungry and was told to walk as much as possible. We would leave the room and walk the halls, one person on each side of me and someone following up from behind pushing the IV pole. Thursday afternoon the good news from the pathology reports had arrived. No other cancer had been found in my ovaries, tubes, or uterus and the pelvic and abdominal lymph nodes were clear of cancer as well. Of the 31 axillary lymph nodes Dr. Byrum had taken, only one had a 1 mm tumor but the rest were all clean. The news couldn't be greater! It was gone. All of the cancer that was inside of me had been cut out and the chances of there being more were much lower now. I was happy to hear the news, but still focused on that task at hand, which was to get better.
By Friday Mike and Suzie had returned to help again and we were all working to get me to pass gas. I was tired of this. If walking was what it was going to take, walking it was going to be. I got up every chance I had and walked as quickly as I could. Everyone had trouble keeping up with me as they ran to roll the IV pole behind me, but I knew if I didn't go quickly, I wouldn't make many laps. Each time I wanted 3 laps. We had been keeping track of my laps around the hallways each day. Every 12 feet there was a small foot sticker on the wall and by the end of the day, I had waked 22 laps or what worked out to be a mile and a half with no success of passing gas.
Saturday morning I woke feeling completely sick again and felt myself going down hill quickly once more. Four laps was all I could make as pain had started to set in. Had we walked too much? By noon the doctors decided I needed a CAT scan to see what was going on. They wheeled me down to x-ray once again but this time into the room with the large donut machine. After passing through a time or two, I returned to my room followed shortly by Dr. Matt and Melissa. They said the scan showed portion of my bowel had become knotted and they were going to have to take me back into surgery that day to fix it. Dr. Matt explained that this time it could not be done laparoscopically but they were going to have to open me up. I was disappointed because I knew that would greatly increase my recovery time. We had worked so hard to do all of this laparoscopically so I could get over this and not delay the chemo treatment and now here we were. But I knew things were becoming serious quickly and they needed to do what they needed to do. Within the hour, both doctors had returned. They had talked with Dr. Byrum and she didn't want me opened up. She was coming in to assist and they were going to do the bowel repair laparoscopically. I was relieved.
They quickly wheeled me down to the surgery preop area. It was completely quiet and only one nurse was anywhere to be seen. I told them to put me in preop bed 1 this time since 2 hadn't been so lucky these last two times. Here I was facing a third surgery in five weeks. Wow. This was crazy.
The preop nurse was slow, quiet and super unfriendly so I was glad when the surgical nurse arrived. He was a big burly guy with giant hands and a great attitude. He reassured me he would be with me the whole time and take good care of me. He immediately started pulling the tape off of my NG tube as it kept slipping down and started re-taping it explaining how these young nurses are getting out of school not knowing simple things like a chevron taping method. In the distance I saw Dr. Byrum walk in and I waved. She, Dr. Matt and Melissa came in shortly. I begged them to take the tube out while I was under, but they said it had to stay in until morning when they could make sure everything was working. It was like a ghost hospital with no activity as it was late Saturday afternoon. Diane had made it down in time to stay with Greg again so I said bye to her, Mike & Suzie, Greg and my dad and I was off to my third surgery.
I don't remember anything from waking up Saturday night, but Sunday morning I felt like there was an electric fence inside of my body and it was shocking my entire left side. That was the first true pain I remember feeling through all of this. Dr. Matt and Melissa came in and explained they had put a permanent mesh inside of me, tacked it in place with permanent sutures, and that would keep my bowel from moving into the empty areas where the ovaries and tumor had been. Basically, the tumor removal and hysterectomy had left some big empty space in my abdomen. Somehow a knuckles worth of my bowel had raised up, skinnied it's way through an abdominal suture, and expanded in the big void in my abdomen cutting off bowel circulation. Basically I had a bowel hernia. Wow, really? How complicated was this going to get.
Mike and Greg were eager to get me out of bed but I was sure my body was on fire and I couldn't move. After a little pain medication, they managed to coax me out of bed and as I sat and then stood up, I was sure I was on fire. I made one lap and then went back to bed. Thank goodness by the next walk the pain had either subsided some or I had gotten more used to it. They had taken the NG tube out Sunday morning and I began eating really for the first time in 8 days, other than the little bit of food I had Tuesday morning after surgery. I had never eaten Italian Ice, but it was the best thing I have ever tasted followed by a Popsicle. All day Sunday we waited anxiously for me to pass gas. I knew it was my magical pass out of there. Finally Sunday evening we all celebrated when I finally farted. Then we started making tally marks of each fart and laughed at our new celebrated fart party.
Monday I continued to recover but still had not had a bowel movement. They removed my IV's and I ate and drank in hopes of encouraging one but no luck. We realized I hadn't urinated and an ultra sound revealed a huge build up of liquid inside my bladder. They were going to have to put a catheter in to stimulate my bladder if I didn't go so with a little concentration and a lot of running water, I released what they could account for putting in me since the surgery and removing the catheter Sunday morning. Discharge was planned for Tuesday so by Tuesday afternoon, I was packed up and ready to head home after an 8 day, two surgery hospital stay.
As Greg and Mike packed up what had become our temporary home, I realized just how much support we had had during our stay. The room was covered in flowers and plants from visitors. Besides Mike and Suzie being by our side, my dad spent every day hanging out in the room with me. Brooklyn stayed most of the week and Preston and his girlfriend Yuri were at both surgeries and came time after time. Our friend Jan came daily to keep my spirits up and check on Greg. Our good friends Paul and Diane drove all the way across town day after day to support us and we had visits from our friends Bruce and Margaret as well as my Aunt Mary and my 99 year old grandma who came up twice throughout the week. My sister-in-law Jan came one day to pick up Brookie and take her back to Safford so she could spend a few days packing to return to Idaho. Even a young lady named Kelli who is dating Carson, Jan's stepson, had been following the blog and came to support Greg during the surgery and came back over on one of the bad nights when I was getting the NG tube inserted. My cousin Jennifer was part of Greg's support group the day of surgery, our friend HL Case stopped to see us on his way through Mesa, and a good friend Mitch Callihan came to check in on us. Besides the visitors there was support from afar through cards and flowers like from my Aunt Rita and Uncle George, my good friends Heidi and Troy, and a wonderful unexpected gift and card delivered by Rhonda Sears from teachers at the middle school. Before leaving Safford, my friend Carol made me a fleece blanket with pink ribbons which became the talk of the hospital and my security blanket through all of this as I never let it leave my side other then in the OR. People also kept in touch with Greg through texting like Carol, who passed updates on to everyone at work, my best friends Trina and Peggy, and our neighbors Gayrene and Kristi. Thank goodness people were looking out for Greg especially when I wasn't allowed to eat. Someone finally whisked him away to Texas Roadhouse and got something besides hospital food in him. And I don't know what I would have done without my friend Suzie who would strip down with me in the bathroom to bathe me, wash my hair, and blow dry it giving me some semblance of feeling human. When I had the NG tube in my nose, I looked awful. I had on no makeup, my hair was a mess and I probably even smelled--a condition in which I have never let friends see me. But having friends and family there to support us made none of that matter. I can't tell you how important the love and support was.
We knew this surgery was going to be a challenge. Having a hysterectomy alone is a big deal, but add to that what ended up being a 12 cm tumor removed, pelvic and abdominal lymph node dissections, an axillary lymph node dissection, and my port put in and top it off with a second emergency surgery for a herniated bowel. Whew. We are a long ways from the simple lumpectomy of a DCIS case we thought we were facing back in November. What we've learned is nothing in this crazy stupid thing called cancer is predictable and you just never know.
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