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.
Tuesday, January 29, 2013
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.
Saturday, January 12, 2013
Not a good day....
From Greg...
Doctors don't hear any more sounds in the bowels as the day before. Doctors went ahead and had a cat scan performed.
Cat scan showed a knot in the intestine. Therefore, she is scheduled for surgery around 4:00 pm on Saturday.
Doctors don't hear any more sounds in the bowels as the day before. Doctors went ahead and had a cat scan performed.
Cat scan showed a knot in the intestine. Therefore, she is scheduled for surgery around 4:00 pm on Saturday.
Friday, January 11, 2013
Update on Recovery for Susan
This is Greg...
Susan had a very rough Wednesday and Thursday. Tuesday night she started eating. However, on Wednesday morning, everything started to come back up. Over the next 9 hours she definitely went down hill mentally and physically. Doctors finally had an x-ray taken of her belly showing that her bowels just weren't working yet. With the surgery being so massive, length of surgery and the extend that they had to push the intestins out of the way to get to the lymph nodes, there was a good chance that they would become irritated and shut down.
Without her stomach fluids exiting the bowels, she started becoming extremely nauseous. They decided to do a NG tube down her nose and into her stomach. Later that night, we then had to relocate to a different floor.
Thursday was much of the same. Lots of nausea and lots of pain. The only way to get intestins to start working was to walk. She did a very good job walking although the pain was tough. Most of the pain was coming from a large air bubble in her chest from the surgery. During the surgery of the hysterectomy, the surgeon had to remove a tube which the massive tumor had to be brought through. The mass was too big to fit through the tube. In removing the tube, the seal was broken into the chest and air penetrated the abdomen.
By Thursday night, she finally started to look better in the face, but nausea still lingered.
Friday morning, doctors could hear faint sounds that her bowels were starting to work, but very little. By afternoon, they were about the same.
Around 4:00 pm, the gynecologist came in with his pathology report. He also said that although he would not present the breast cancer report, he did have an insight to what it would say. For the breast cancer, 31 lymph nodes were removed. Of the 31, only 1 was found to be a 1 cm cancer. So that's good news. So all that remains in her body is a 1 cm lymph node behind her chest cavity which cannot be surgically removed. That will take radiation and chemo.
For the gynecology report, the tumor was 11 cm. It was found to be a borderline tumor. So not cancer. The fallopian tubes, uterus, ovaries and cervix were benign. None of the lymph nodes removed from pelvis area were cancerous. So all of this was really good news. We were thinking this could be a whole new type of cancer such as ovarian. Although the tumor was all that needed to be removed, removing all the other stuff just keep future cancer to find a place to live.
So as far as the gynecologist goes, he is through with Susan except for future checkups.
We will wait for the breast doctors tomorrow for their report.
Susan has a long ways to go to get bowels working. Just have to walk and walk and walk.
The nauseous feeling has subsided. At this point, since Tuesday night, she has had no food or water, not even ice. She is managing it.
Greg
Susan had a very rough Wednesday and Thursday. Tuesday night she started eating. However, on Wednesday morning, everything started to come back up. Over the next 9 hours she definitely went down hill mentally and physically. Doctors finally had an x-ray taken of her belly showing that her bowels just weren't working yet. With the surgery being so massive, length of surgery and the extend that they had to push the intestins out of the way to get to the lymph nodes, there was a good chance that they would become irritated and shut down.
Without her stomach fluids exiting the bowels, she started becoming extremely nauseous. They decided to do a NG tube down her nose and into her stomach. Later that night, we then had to relocate to a different floor.
Thursday was much of the same. Lots of nausea and lots of pain. The only way to get intestins to start working was to walk. She did a very good job walking although the pain was tough. Most of the pain was coming from a large air bubble in her chest from the surgery. During the surgery of the hysterectomy, the surgeon had to remove a tube which the massive tumor had to be brought through. The mass was too big to fit through the tube. In removing the tube, the seal was broken into the chest and air penetrated the abdomen.
By Thursday night, she finally started to look better in the face, but nausea still lingered.
Friday morning, doctors could hear faint sounds that her bowels were starting to work, but very little. By afternoon, they were about the same.
Around 4:00 pm, the gynecologist came in with his pathology report. He also said that although he would not present the breast cancer report, he did have an insight to what it would say. For the breast cancer, 31 lymph nodes were removed. Of the 31, only 1 was found to be a 1 cm cancer. So that's good news. So all that remains in her body is a 1 cm lymph node behind her chest cavity which cannot be surgically removed. That will take radiation and chemo.
For the gynecology report, the tumor was 11 cm. It was found to be a borderline tumor. So not cancer. The fallopian tubes, uterus, ovaries and cervix were benign. None of the lymph nodes removed from pelvis area were cancerous. So all of this was really good news. We were thinking this could be a whole new type of cancer such as ovarian. Although the tumor was all that needed to be removed, removing all the other stuff just keep future cancer to find a place to live.
So as far as the gynecologist goes, he is through with Susan except for future checkups.
We will wait for the breast doctors tomorrow for their report.
Susan has a long ways to go to get bowels working. Just have to walk and walk and walk.
The nauseous feeling has subsided. At this point, since Tuesday night, she has had no food or water, not even ice. She is managing it.
Greg
Wednesday, January 9, 2013
Days After Surgery...
This is Greg.
After the 8 hour surgery on Monday night, she arrived at her room after 11:00 pm. Tuesday was a painful day, but she did manage to walk around and eat.
Today, Wednesday, she has gone down hill a bit. Since morning, she has been extremely nauseous and can't eat or drink. She is getting prepped to go to X-Ray and take a look at her bowels. Most likely they are not yet working and may need help through drugs or clearing the obstruction. Although we were slated to go home today, it looks like it could be another two days in the hospital.
She has been complaining about numbness in her hands. Her left is better, but still numb. The right has been the worst. Neurology will take a look at it soon. I'm thinking time will fix that problem.
I will keep you updated as I can.
Greg
Update at 6:00 PM. Xray shows her bowels are not working. She's been taken off of all food and water until time fixes the problem. Could take several days.
Greg
After the 8 hour surgery on Monday night, she arrived at her room after 11:00 pm. Tuesday was a painful day, but she did manage to walk around and eat.
Today, Wednesday, she has gone down hill a bit. Since morning, she has been extremely nauseous and can't eat or drink. She is getting prepped to go to X-Ray and take a look at her bowels. Most likely they are not yet working and may need help through drugs or clearing the obstruction. Although we were slated to go home today, it looks like it could be another two days in the hospital.
She has been complaining about numbness in her hands. Her left is better, but still numb. The right has been the worst. Neurology will take a look at it soon. I'm thinking time will fix that problem.
I will keep you updated as I can.
Greg
Update at 6:00 PM. Xray shows her bowels are not working. She's been taken off of all food and water until time fixes the problem. Could take several days.
Greg
Monday, January 7, 2013
Update on Monday Surgery From Greg...
Hi. This is Greg. I just wanted to give everyone an update on Susan's Surgery.
She went into surgery at 1:00 PM and Dr. Byrum started at 1:45 PM. She came out at 4:00 and said that she had removed the lymph nodes. She said several of them were very hard. Usually this is an indication that they are cancerous. However, because she was there 4 weeks ago, she felt that they were hard due to a reaction from surgery. Pathology will be back on Thursday to tell us if it is a reaction or cancerous.
She also installed the port on her left side.
At 4:30 PM, Dr. Matt started the hysterectomy. The surgery was completed at 9:00. I got to talk to the doctor at 9:30. He indicated that the tumor mass is not cancer, but is borderline. This means that it could go either way, but he felt it would not be invasive. He will have his results back on Friday and it will go to the tumor board on Friday. Because it was borderline, he went ahead and took the lymph nodes from that area.
We are waiting for her to go to her room at 11:00 PM. She will definitely be here until Wednesday in the hospital.
Thanks....
Greg
She went into surgery at 1:00 PM and Dr. Byrum started at 1:45 PM. She came out at 4:00 and said that she had removed the lymph nodes. She said several of them were very hard. Usually this is an indication that they are cancerous. However, because she was there 4 weeks ago, she felt that they were hard due to a reaction from surgery. Pathology will be back on Thursday to tell us if it is a reaction or cancerous.
She also installed the port on her left side.
At 4:30 PM, Dr. Matt started the hysterectomy. The surgery was completed at 9:00. I got to talk to the doctor at 9:30. He indicated that the tumor mass is not cancer, but is borderline. This means that it could go either way, but he felt it would not be invasive. He will have his results back on Friday and it will go to the tumor board on Friday. Because it was borderline, he went ahead and took the lymph nodes from that area.
We are waiting for her to go to her room at 11:00 PM. She will definitely be here until Wednesday in the hospital.
Thanks....
Greg
Surgery Day #2 Finally Here........
1/7/13--Monday--Day 86--T-minus 0--Surgery Day
Well I certainly never anticipated having to have a second surgery back when all this started, but since I am, I am awfully glad the day is finally here and we will get this over. Today is a bit easier than the first surgery only because I'm at least familiar with the process.
I slept well last night after spending the day yesterday with Greg and Brooklyn as well as our friends Mike and Suzie. We made a fun breakfast of biscuits and gravy and cinnamon rolls before my clear liquid diet started at noon. Suzie colored and highlighted my hair. We figured we might as well since I should have hair about six more weeks. Then we worked on making treats for all the doctors and nurses. We called them Kisses of Hope and they are darling. I can't think of a better way I could have spent my day than making smiles for other people. This time we made enough to share with lots of people.
We are heading to Phoenix early so we can stop and see my grandma for a few minutes then go to the wig shop. The more I've looked at the pictures of the wig and shown it to people, the more sure I am about it. That should be perfect timing for getting to the hospital at 11.
Today they will do the axillary node dissection first then remove the tumor and do the hysterectomy. They will also put in my ports but I'm not sure exactly where that falls in the order of business. They said they move from "clean to dirty" so I'll assume it's after the nodes and before the tumor. The port will go in my left side by my collar bone so I should pretty well have a sore spot in every part of my body core :)
The surgery will be 4 to 5 hours so it will be a long wait for Greg. He will be surrounded by family and friends so that will help. Thanks ahead of time for keeping us in your prayers. I know everything is going to go really well today. I'm not sure when my next blog post will be but feel free to text Greg or me and check on things. Thanks for following my journey leading up to this surgery day!
Well I certainly never anticipated having to have a second surgery back when all this started, but since I am, I am awfully glad the day is finally here and we will get this over. Today is a bit easier than the first surgery only because I'm at least familiar with the process.
I slept well last night after spending the day yesterday with Greg and Brooklyn as well as our friends Mike and Suzie. We made a fun breakfast of biscuits and gravy and cinnamon rolls before my clear liquid diet started at noon. Suzie colored and highlighted my hair. We figured we might as well since I should have hair about six more weeks. Then we worked on making treats for all the doctors and nurses. We called them Kisses of Hope and they are darling. I can't think of a better way I could have spent my day than making smiles for other people. This time we made enough to share with lots of people.
We are heading to Phoenix early so we can stop and see my grandma for a few minutes then go to the wig shop. The more I've looked at the pictures of the wig and shown it to people, the more sure I am about it. That should be perfect timing for getting to the hospital at 11.
Today they will do the axillary node dissection first then remove the tumor and do the hysterectomy. They will also put in my ports but I'm not sure exactly where that falls in the order of business. They said they move from "clean to dirty" so I'll assume it's after the nodes and before the tumor. The port will go in my left side by my collar bone so I should pretty well have a sore spot in every part of my body core :)
The surgery will be 4 to 5 hours so it will be a long wait for Greg. He will be surrounded by family and friends so that will help. Thanks ahead of time for keeping us in your prayers. I know everything is going to go really well today. I'm not sure when my next blog post will be but feel free to text Greg or me and check on things. Thanks for following my journey leading up to this surgery day!
Saturday, January 5, 2013
Preop Appointments--Preparing for Surgery #2...........
1/4/13--Friday--Day 83--T-Minus 3 Days--Monday Can't Come Soon Enough
We just got home from a crazy two day trip to Mesa. Yesterday we were able to cram all four doctor appointments into one day and four hours. I love that about the MD Anderson Cancer Center. They never make you wait, yet never make you feel rushed through an appointment. Where else can you see four doctors in four hours!
When we woke Thursday morning to head down for the day, we realized if we didn't spend the night and take Brooklyn with us, we wouldn't have a chance for her to help with the wig shopping. Plus, she and I had planned to do a makeover at one of the department stores, but since I had been trying to get over a cold before surgery through the entire Christmas break, we hadn't made it back to the city. So we woke her and the three of us left a little later than planned. In Mesa, Brooklyn dropped us off at the cancer center and went shopping while we headed in to hear all the preop details.
First we met Leona, the lymphedema specialist. Dr. Cianfrocca wanted me to see her prior to the surgery so she could take baseline measurements in case I developed lymphedema in my right arm. She came out to the waiting room shortly after we checked in and escorted us back. Instead of stopping in the long hallway in the middle of the building where all the exam rooms are located, she took us back to the next section where the offices lined the far side of the building and had windows looking over the parking lot. We hadn't been to that part of the building before. She had educational posters on the wall outlining the lymph nodes throughout the body--they are everywhere--and started educating us about how the lymph system works.
I've heard of lymph nodes all of my life, but never really took time to know what they are or what they do until all of this started. She explained that the lymph system is the drainage system of our body. Blood runs through our veins to various parts of our body and plasma carries all of the good things like oxygen and nutrients to our cells and tissue. After it delivers this to the cells, as it exits each cell, it cleanses the cell and tissue removing bad things from them. Most of the plasma goes back into the blood stream for the return trip but a small amount of it, about 10%, remains behind in our tissue and enters our lymph system. This fluid, filled with waste from our cells and tissue, travels through our lymph system which has hundreds of lymph nodes. The lymph nodes are filled with white blood cells and cleanse the the waist product from the lymph fluid before it moves on. Eventually the clean lymph fluid re-enters our blood stream. I probably didn't explain that completely medically correctly, but hopefully that makes some sense. What's interesting is this lymph system is like a whole other circulatory system, but it doesn't have a heart to pump it. It is all connected through ducts and all of the lymph fluid flows upward to our neck where it eventually reenters our bloodstream after being cleaned through a number of lymph nodes.
SOOOOO, maybe that explains why cancer, which was in my breast, moved into my lymph system. The lymph node where they found a 1cm tumor just became overwhelmed with yucky stuff, too much to clean, and the cancer overtook it. SOOOOOO, on the drainage part, when you remove a couple of scoops of these lymph nodes, you interrupt this drainage system. SOOOOO, hopefully, the fluid finds new paths in other parts of the lymph system. HOWEVER, sometimes, the drainage doesn't happen fast enough, so you experience swelling in your arm from this yucky left over fluid. THAT is lymphedema. Whew. That was a lot of medical knowledge!
We have three levels of axillary lymph nodes which are located from our armpit up toward our neck by the collar bone. Like all the professionals at the cancer center, Leona had studied my case, and knew what each of the doctors on my team were doing with me. "Dr. Byrum will only be taking the level one and level two axillary nodes, but will leave the level three ones. That will help," she explained. Using the posters, she showed us how the lymph system tries to compensate and find other paths for drainage when some of the lymph nodes are removed. That sounded positive enough, but like always, there seems to be a not-so-positive side. Because the right side lymph nodes drain only the arm and right side of the face, there is more like an 80% chance of developing lymphedema when you remove the axillary nodes on the right side--of course!
After our lymph system education, Leona showed me compression sleeves. These are tight, custom-fit sleeves you wear to help discourage liquid from accumulating in the arm, or basically to push the lymphatic liquid back out. As I slipped my arm through one and tried to pull it up, it was like trying to squeeze into a wetsuit that was two sizes too small. Hmmm, not so good for someone who doesn't wear a wetsuit because she can't stand feeling confined. This will be a challenge, I thought to myself. She explained that I should wear the sleeve any time I travel on an airplane or any time I increase my activity level in that arm. She also explained how a low sodium diet will become important and how she will teach us some massage techniques to help stimulate the circulation After examining the sleeves, she had me change into a gown and she began measuring me. She lined my arm with a special tape measure and made small marks about every two inches from my fingers to the top of my shoulders. Then she took a measurement around my arm at each mark. She did this on both arms so she had a comparison. If the tumor in my abdomen is cancerous, Dr. Schlumbrect will remove the lymph nodes by each pelvic bone and the ones in my abdomen as well. Therefore, she had to do the same complex measurements on each of my legs, just in case.
We finished just in time to make my next appointment. As she walked me back to the middle hallway exam rooms, she explained that she would see me Tuesday in the hospital to review some of this again before I was released. She handed me a small stack of papers to study about lymphedema. In the hallway we ran into Dr. Schlumbrect who took us into one of those conference room with two couches and a computer. As he began talking, he seemed much more personable than our first meeting in December. I found myself joking with him and laughing and felt more at ease. First he showed us the results of the vaginal ultrasound he had me do on our last visit. The image came up on the screen and he showed me how the tumor actually measured 11.5 cm instead of 10 like the PET scan showed. He explained how he still felt good about it probably not being cancerous. He said tumors that have high levels of cancer usually show lines through them but mine didn't, so that was a good sign. If it is cancerous or borderline cancerous, he explained that he would take the pelvic and abdominal lymph nodes. He then spent nearly 45 minutes explaining the hysterectomy and tumor removal procedures in detail and answering all of the questions I had. There will be no drain tubes, that's good. There will be five small incisions, two in my lower abdomen, one in my belly button, one more to the side and one higher up on the left. He emphasized that even though this is laparoscopic surgery on the outside, the largest incision will be on the inside and it is major surgery so I needed to treat it as such. He will remove my uterus, ovaries, and tubes, but what I didn't realize is that means the cervix too. That was interesting. Once all of the stuff comes out, he sews together the top of the vagina, which is what is the largest incision and takes the most recovery. If he has to take the lymph nodes, he can still do those laparoscopically. I will be in the hospital Monday night, and if I can do all the bodily functions--eat, potty, and fart, lol--I can be released on Tuesday but he wants me to stay in the area Tuesday night as a precaution. I'll have a catheter until Tuesday morning, yuck, but he assured me I'll thank him for that because I won't really feel like getting up. I asked him if he would remove some of my belly fat while he was in there, but he said that was a no-go. Bummer. Then the typical--no lifting, strenuous activity, baths or hot tub for six week. He'll see me back in two weeks. He said his part of the surgery will take about 2.5 to 3 hours if the tumor is not cancerous and 4 or more if it is. Then he gave me instructions for a bowel prep the evening before--wow, that didn't sound so fun--and only clear liquids starting at noon on Sunday with nothing after midnight. That's it. I was prepped and ready for his part. As he exited the room, a nurse whisked us off and down the hall to see Dr. Byrum for her part.
I had lots of questions for her, the first being why were we taking these lymph nodes! I had been questioning that for awhile but after the 80% of the patients develop lymphedema fact, I really questions why we were doing this. She disagreed with Leona and said the percentage of patients who develop lymphedema isn't even close to that high. Then she explained why she felt it was important to do the surgery. She reviewed all of the evidence with us again and based on the size of the lump she removed originally, the type and aggressiveness, and the fact that the sentinel node had an additional tumor, she felt very strongly that we needed to remove the axillary nodes. Then she explained a little more about them. After seeing the posters in Leona's office, it seemed like they were little marbles throughout the lymph system. Dr. Byrum said the axillary lymph nodes are more like a handful of chicken fat. She said she can't tell how many lymph nodes she is removing when she cuts out that fatty looking glob. Only after it is evaluated by pathology, which takes several day, will she know now many she took and whether or not they were cancerous. "How will you know you won't be taking the level three ones then," I asked. She explained they are higher up and behind a different muscle, so she knows she will only get the level one and twos. That will greatly help reduce my chances for developing lymphedema. She will use the same incision under my arm where she took the two sentinel nodes but will extend it by a centimeter or two. That's good because two spots in that scar opened up a little so she will cut the old incision out and redo it. I will have a drain tube in that area because it is such a small and compressed area and it can't absorb the blood like the abdominal area can. That will be in for one to two weeks depending on when it stops draining. I told her my concerns about the inner mammary node not being taken and she explained the complications of removing that one, plus, we can't confirm it is cancer. That was interesting, but she said the PET scan shows activity in an area and since I had just had surgery close to that area, we can't be sure it is showing cancerous activity and not just healing type activity. I'm not sure I believed that, but she assured me the radiation and chemo would take care of it if it was cancerous. She did say the area that will be radiated will most likely be expanded farther out than the original discussion because of the sentinel lymph node being positive and the possibility of that mammary node having cancer. Her part of the surgery would be about 1.5 hours so going in at 1 PM, I probably wouldn't be out of the operating room until 5:30 or 6 and then in recovery for 1.5 to 2 hours. I realize what a long wait it will be for Greg and I am really glad he will be surrounded by family and close friends. I know he'll be nervous.
From that exam room we were led down to the end of the hall to see Dr. Munoz. He had some good news. After putting all of the factors into the risk calculations, at this time he was only recommending Lovenox for 28 days rather than the six months. That was great news. He still had to run it through insurance, and, if the large tumor ends up being cancerous and they change the chemo medications they are considering, that may change, but for now that was good news. The bad news is it is twice a day rather than once. Yuck! The thought of shots in my tummy once a day were bad enough but twice a day sure wasn't going to be fun, but 28 days was still better than six months.
It was just approaching 4 PM and we were done! Whew. Brooklyn picked us up and we made one more stop before heading to spend the evening with some friends for a relaxing night and a sleepover at Preston's. Friday morning we headed to Costco for some quick shopping then to the wig shop. It was important for me to have Brooklyn be part of picking out a wig. Several weeks before Christmas we had spent a day at a wig shop across town, but there was another shop that came highly recommended, Suzie's Wigs, and it was in Mesa. Brooklyn had always been my fashion consultant and since she wasn't going to be home during the first few months of my chemo, I really wanted her to be part of this. When we walked in, they had at least twice as many wigs as the first shop where we looked. I immediately liked several of them. The associates were busy helping a woman about my age who was trying on different styles. It seemed odd someone my age would be buying a wig just for a hairstyle, but that was what she was doing, or at least that's what she said. An older couple was waiting as well. I figured they would be thinking the same about me looking for a wig with my nice, thick hair so I immediately started making comments about losing my hair in about six weeks. At first I could tell it shocked the older couple but I kept a smile and an upbeat appearance and that seemed to put everyone more at ease. I tried on a few wigs while the other woman was trying to make her final decision. I loved one she had picked out so she let me try it on before she bought it. It looked good but was a bit too curly. Brooklyn wanted me to go with a completely different look than my normal look so we tried on some with long straight hair and bangs. They looked good, but I still wasn't sold. Soon the older woman had put on the wig she had ordered and the ladies adjusted it. She looked great. As they left the store, the man stopped and looked me in the eye and said, "I wish you the very best of luck with your treatments." That meant a lot. I knew he felt bad for me so I sincerely thanked him and assured him everything was going to be okay and he smiled and nodded as he left. I sat in the chair and tried on half a dozen different looks until I found the one that seemed perfect. It almost matched my current hair perfectly. I wanted to see it in the sunlight, and she said I could go outside with it. All of a sudden my heart started racing. It's one thing to be light hearted and try on wigs in a wig store. It's completely different to leave that safe zone and enter the real world. I took a deep breath, swallowed my anxiety and faced it head on as I walked outside with a mirror. It looked good. Greg took a few pictures outside in the sunlight before we went back in. I tried on a few of the others again just to make sure then returned to the perfect one. The associate agreed to put it on hold until Monday. I wanted to return right when they opened on Monday before I go to the hospital. That way I could walk away for the weekend and make sure. Besides, Mike and Suzie would be with us on Monday and it would be two more sets of eyes before we made the $300 commitment.
After leaving the store, I had a unique opportunity to meet up with Heidi, my friend from high school whose mother is going through breast cancer. When I was first diagnosed, I found out Heidi's mother was about three weeks ahead of me in her DCIS diagnosis and Heidi and I spent hours in the middle of the nights texting back and forth about details we were both just learning about. That was when mine was "just DCIS" and wasn't really going to be a big deal. I haven't seen Heidi in 30 years since she attended our wedding. It's amazing how Facebook makes it seems like you've seen each other just last week. She and her husband were in town unexpectedly (she lives in Louisiana) due to a family emergency and our recent connection through the cancer made it imperative I see her. We visited for almost two hours and it was extremely comforting for some reason. Maybe it's the old saying "misery loves company" but talking and texting with someone going through the same thing at the same time just makes an extremely emotional connection. From there we got a bite to eat and headed to the mall for the Brookie make-up makeover. It was the perfect ending to the trip. I loved watching her get a makeover and us deciding what to buy together. She looked amazing and everyone kept commenting on how beautiful she is. Those are the little things that make your heart smile, even in the middle of this stupid cancer thing. Though we didn't make it home until after dark, I was glad we spent an extra day doing something fun rather than just making a day trip filled with doctors.
So as I wrap up this blog post, the countdown to surgery is close, T-minus 60 hours. And while I know this is far from the end of the cancer, hopefully it will mark a milestone by being the end of the unknown. I am a little scared, but I've come to accept the hysterectomy and I'm settled about that. I feel a little less anxious about the inner mammary node that will stay inside of me. I feel somewhat nervous about the potential side effects of the axillary nodes coming out, but more sure of the necessity for them to be removed. I pray the tumor is not cancerous, but if it is, we'll deal with that too. At least we'll know. So for now, Monday can't come soon enough.
We just got home from a crazy two day trip to Mesa. Yesterday we were able to cram all four doctor appointments into one day and four hours. I love that about the MD Anderson Cancer Center. They never make you wait, yet never make you feel rushed through an appointment. Where else can you see four doctors in four hours!
When we woke Thursday morning to head down for the day, we realized if we didn't spend the night and take Brooklyn with us, we wouldn't have a chance for her to help with the wig shopping. Plus, she and I had planned to do a makeover at one of the department stores, but since I had been trying to get over a cold before surgery through the entire Christmas break, we hadn't made it back to the city. So we woke her and the three of us left a little later than planned. In Mesa, Brooklyn dropped us off at the cancer center and went shopping while we headed in to hear all the preop details.
First we met Leona, the lymphedema specialist. Dr. Cianfrocca wanted me to see her prior to the surgery so she could take baseline measurements in case I developed lymphedema in my right arm. She came out to the waiting room shortly after we checked in and escorted us back. Instead of stopping in the long hallway in the middle of the building where all the exam rooms are located, she took us back to the next section where the offices lined the far side of the building and had windows looking over the parking lot. We hadn't been to that part of the building before. She had educational posters on the wall outlining the lymph nodes throughout the body--they are everywhere--and started educating us about how the lymph system works.
I've heard of lymph nodes all of my life, but never really took time to know what they are or what they do until all of this started. She explained that the lymph system is the drainage system of our body. Blood runs through our veins to various parts of our body and plasma carries all of the good things like oxygen and nutrients to our cells and tissue. After it delivers this to the cells, as it exits each cell, it cleanses the cell and tissue removing bad things from them. Most of the plasma goes back into the blood stream for the return trip but a small amount of it, about 10%, remains behind in our tissue and enters our lymph system. This fluid, filled with waste from our cells and tissue, travels through our lymph system which has hundreds of lymph nodes. The lymph nodes are filled with white blood cells and cleanse the the waist product from the lymph fluid before it moves on. Eventually the clean lymph fluid re-enters our blood stream. I probably didn't explain that completely medically correctly, but hopefully that makes some sense. What's interesting is this lymph system is like a whole other circulatory system, but it doesn't have a heart to pump it. It is all connected through ducts and all of the lymph fluid flows upward to our neck where it eventually reenters our bloodstream after being cleaned through a number of lymph nodes.
SOOOOO, maybe that explains why cancer, which was in my breast, moved into my lymph system. The lymph node where they found a 1cm tumor just became overwhelmed with yucky stuff, too much to clean, and the cancer overtook it. SOOOOOO, on the drainage part, when you remove a couple of scoops of these lymph nodes, you interrupt this drainage system. SOOOOO, hopefully, the fluid finds new paths in other parts of the lymph system. HOWEVER, sometimes, the drainage doesn't happen fast enough, so you experience swelling in your arm from this yucky left over fluid. THAT is lymphedema. Whew. That was a lot of medical knowledge!
We have three levels of axillary lymph nodes which are located from our armpit up toward our neck by the collar bone. Like all the professionals at the cancer center, Leona had studied my case, and knew what each of the doctors on my team were doing with me. "Dr. Byrum will only be taking the level one and level two axillary nodes, but will leave the level three ones. That will help," she explained. Using the posters, she showed us how the lymph system tries to compensate and find other paths for drainage when some of the lymph nodes are removed. That sounded positive enough, but like always, there seems to be a not-so-positive side. Because the right side lymph nodes drain only the arm and right side of the face, there is more like an 80% chance of developing lymphedema when you remove the axillary nodes on the right side--of course!
After our lymph system education, Leona showed me compression sleeves. These are tight, custom-fit sleeves you wear to help discourage liquid from accumulating in the arm, or basically to push the lymphatic liquid back out. As I slipped my arm through one and tried to pull it up, it was like trying to squeeze into a wetsuit that was two sizes too small. Hmmm, not so good for someone who doesn't wear a wetsuit because she can't stand feeling confined. This will be a challenge, I thought to myself. She explained that I should wear the sleeve any time I travel on an airplane or any time I increase my activity level in that arm. She also explained how a low sodium diet will become important and how she will teach us some massage techniques to help stimulate the circulation After examining the sleeves, she had me change into a gown and she began measuring me. She lined my arm with a special tape measure and made small marks about every two inches from my fingers to the top of my shoulders. Then she took a measurement around my arm at each mark. She did this on both arms so she had a comparison. If the tumor in my abdomen is cancerous, Dr. Schlumbrect will remove the lymph nodes by each pelvic bone and the ones in my abdomen as well. Therefore, she had to do the same complex measurements on each of my legs, just in case.
We finished just in time to make my next appointment. As she walked me back to the middle hallway exam rooms, she explained that she would see me Tuesday in the hospital to review some of this again before I was released. She handed me a small stack of papers to study about lymphedema. In the hallway we ran into Dr. Schlumbrect who took us into one of those conference room with two couches and a computer. As he began talking, he seemed much more personable than our first meeting in December. I found myself joking with him and laughing and felt more at ease. First he showed us the results of the vaginal ultrasound he had me do on our last visit. The image came up on the screen and he showed me how the tumor actually measured 11.5 cm instead of 10 like the PET scan showed. He explained how he still felt good about it probably not being cancerous. He said tumors that have high levels of cancer usually show lines through them but mine didn't, so that was a good sign. If it is cancerous or borderline cancerous, he explained that he would take the pelvic and abdominal lymph nodes. He then spent nearly 45 minutes explaining the hysterectomy and tumor removal procedures in detail and answering all of the questions I had. There will be no drain tubes, that's good. There will be five small incisions, two in my lower abdomen, one in my belly button, one more to the side and one higher up on the left. He emphasized that even though this is laparoscopic surgery on the outside, the largest incision will be on the inside and it is major surgery so I needed to treat it as such. He will remove my uterus, ovaries, and tubes, but what I didn't realize is that means the cervix too. That was interesting. Once all of the stuff comes out, he sews together the top of the vagina, which is what is the largest incision and takes the most recovery. If he has to take the lymph nodes, he can still do those laparoscopically. I will be in the hospital Monday night, and if I can do all the bodily functions--eat, potty, and fart, lol--I can be released on Tuesday but he wants me to stay in the area Tuesday night as a precaution. I'll have a catheter until Tuesday morning, yuck, but he assured me I'll thank him for that because I won't really feel like getting up. I asked him if he would remove some of my belly fat while he was in there, but he said that was a no-go. Bummer. Then the typical--no lifting, strenuous activity, baths or hot tub for six week. He'll see me back in two weeks. He said his part of the surgery will take about 2.5 to 3 hours if the tumor is not cancerous and 4 or more if it is. Then he gave me instructions for a bowel prep the evening before--wow, that didn't sound so fun--and only clear liquids starting at noon on Sunday with nothing after midnight. That's it. I was prepped and ready for his part. As he exited the room, a nurse whisked us off and down the hall to see Dr. Byrum for her part.
I had lots of questions for her, the first being why were we taking these lymph nodes! I had been questioning that for awhile but after the 80% of the patients develop lymphedema fact, I really questions why we were doing this. She disagreed with Leona and said the percentage of patients who develop lymphedema isn't even close to that high. Then she explained why she felt it was important to do the surgery. She reviewed all of the evidence with us again and based on the size of the lump she removed originally, the type and aggressiveness, and the fact that the sentinel node had an additional tumor, she felt very strongly that we needed to remove the axillary nodes. Then she explained a little more about them. After seeing the posters in Leona's office, it seemed like they were little marbles throughout the lymph system. Dr. Byrum said the axillary lymph nodes are more like a handful of chicken fat. She said she can't tell how many lymph nodes she is removing when she cuts out that fatty looking glob. Only after it is evaluated by pathology, which takes several day, will she know now many she took and whether or not they were cancerous. "How will you know you won't be taking the level three ones then," I asked. She explained they are higher up and behind a different muscle, so she knows she will only get the level one and twos. That will greatly help reduce my chances for developing lymphedema. She will use the same incision under my arm where she took the two sentinel nodes but will extend it by a centimeter or two. That's good because two spots in that scar opened up a little so she will cut the old incision out and redo it. I will have a drain tube in that area because it is such a small and compressed area and it can't absorb the blood like the abdominal area can. That will be in for one to two weeks depending on when it stops draining. I told her my concerns about the inner mammary node not being taken and she explained the complications of removing that one, plus, we can't confirm it is cancer. That was interesting, but she said the PET scan shows activity in an area and since I had just had surgery close to that area, we can't be sure it is showing cancerous activity and not just healing type activity. I'm not sure I believed that, but she assured me the radiation and chemo would take care of it if it was cancerous. She did say the area that will be radiated will most likely be expanded farther out than the original discussion because of the sentinel lymph node being positive and the possibility of that mammary node having cancer. Her part of the surgery would be about 1.5 hours so going in at 1 PM, I probably wouldn't be out of the operating room until 5:30 or 6 and then in recovery for 1.5 to 2 hours. I realize what a long wait it will be for Greg and I am really glad he will be surrounded by family and close friends. I know he'll be nervous.
From that exam room we were led down to the end of the hall to see Dr. Munoz. He had some good news. After putting all of the factors into the risk calculations, at this time he was only recommending Lovenox for 28 days rather than the six months. That was great news. He still had to run it through insurance, and, if the large tumor ends up being cancerous and they change the chemo medications they are considering, that may change, but for now that was good news. The bad news is it is twice a day rather than once. Yuck! The thought of shots in my tummy once a day were bad enough but twice a day sure wasn't going to be fun, but 28 days was still better than six months.
It was just approaching 4 PM and we were done! Whew. Brooklyn picked us up and we made one more stop before heading to spend the evening with some friends for a relaxing night and a sleepover at Preston's. Friday morning we headed to Costco for some quick shopping then to the wig shop. It was important for me to have Brooklyn be part of picking out a wig. Several weeks before Christmas we had spent a day at a wig shop across town, but there was another shop that came highly recommended, Suzie's Wigs, and it was in Mesa. Brooklyn had always been my fashion consultant and since she wasn't going to be home during the first few months of my chemo, I really wanted her to be part of this. When we walked in, they had at least twice as many wigs as the first shop where we looked. I immediately liked several of them. The associates were busy helping a woman about my age who was trying on different styles. It seemed odd someone my age would be buying a wig just for a hairstyle, but that was what she was doing, or at least that's what she said. An older couple was waiting as well. I figured they would be thinking the same about me looking for a wig with my nice, thick hair so I immediately started making comments about losing my hair in about six weeks. At first I could tell it shocked the older couple but I kept a smile and an upbeat appearance and that seemed to put everyone more at ease. I tried on a few wigs while the other woman was trying to make her final decision. I loved one she had picked out so she let me try it on before she bought it. It looked good but was a bit too curly. Brooklyn wanted me to go with a completely different look than my normal look so we tried on some with long straight hair and bangs. They looked good, but I still wasn't sold. Soon the older woman had put on the wig she had ordered and the ladies adjusted it. She looked great. As they left the store, the man stopped and looked me in the eye and said, "I wish you the very best of luck with your treatments." That meant a lot. I knew he felt bad for me so I sincerely thanked him and assured him everything was going to be okay and he smiled and nodded as he left. I sat in the chair and tried on half a dozen different looks until I found the one that seemed perfect. It almost matched my current hair perfectly. I wanted to see it in the sunlight, and she said I could go outside with it. All of a sudden my heart started racing. It's one thing to be light hearted and try on wigs in a wig store. It's completely different to leave that safe zone and enter the real world. I took a deep breath, swallowed my anxiety and faced it head on as I walked outside with a mirror. It looked good. Greg took a few pictures outside in the sunlight before we went back in. I tried on a few of the others again just to make sure then returned to the perfect one. The associate agreed to put it on hold until Monday. I wanted to return right when they opened on Monday before I go to the hospital. That way I could walk away for the weekend and make sure. Besides, Mike and Suzie would be with us on Monday and it would be two more sets of eyes before we made the $300 commitment.
After leaving the store, I had a unique opportunity to meet up with Heidi, my friend from high school whose mother is going through breast cancer. When I was first diagnosed, I found out Heidi's mother was about three weeks ahead of me in her DCIS diagnosis and Heidi and I spent hours in the middle of the nights texting back and forth about details we were both just learning about. That was when mine was "just DCIS" and wasn't really going to be a big deal. I haven't seen Heidi in 30 years since she attended our wedding. It's amazing how Facebook makes it seems like you've seen each other just last week. She and her husband were in town unexpectedly (she lives in Louisiana) due to a family emergency and our recent connection through the cancer made it imperative I see her. We visited for almost two hours and it was extremely comforting for some reason. Maybe it's the old saying "misery loves company" but talking and texting with someone going through the same thing at the same time just makes an extremely emotional connection. From there we got a bite to eat and headed to the mall for the Brookie make-up makeover. It was the perfect ending to the trip. I loved watching her get a makeover and us deciding what to buy together. She looked amazing and everyone kept commenting on how beautiful she is. Those are the little things that make your heart smile, even in the middle of this stupid cancer thing. Though we didn't make it home until after dark, I was glad we spent an extra day doing something fun rather than just making a day trip filled with doctors.
So as I wrap up this blog post, the countdown to surgery is close, T-minus 60 hours. And while I know this is far from the end of the cancer, hopefully it will mark a milestone by being the end of the unknown. I am a little scared, but I've come to accept the hysterectomy and I'm settled about that. I feel a little less anxious about the inner mammary node that will stay inside of me. I feel somewhat nervous about the potential side effects of the axillary nodes coming out, but more sure of the necessity for them to be removed. I pray the tumor is not cancerous, but if it is, we'll deal with that too. At least we'll know. So for now, Monday can't come soon enough.
Thursday, January 3, 2013
Support From So Many..........
1/2/13--Wednesday--Day 81--T-Minus 5 Days--Together, Let's Kick This Thing
It was two months ago tonight the word cancer entered my life for the first time in a very personal way. Wow, so much has happened and I've learned so much in these past 61 days. Tomorrow we travel to Phoenix for another doctor-filled day. Melissa, Dr. Byrum's assistant, called today. She said it was ridiculous the schedulers were having me spend the night in Phoenix for pre-op appointments spread over two day, so she juggled schedules and found a way to get me in to see all four doctors tomorrow. Bless her! She has turned out to be super caring and amazingly accommodating for us. She's the one who called last Friday and finalized the surgery details with me as well. I've been so grateful for her help as well as and Adrianna's, my nurse navigator.
So tomorrow morning we will leave early enough to make it to Mesa for a 12 o'clock appointment with the lymphedema specialist, and then we will see Dr. Schlumbrecht at 1, Dr. Byrum at 2 and Dr. Munoz at 3. Greg's computer needs a little doctoring too so we have an appointment at the Apple Genius bar at 4:30 and then we are heading to help a friend with an iPhone problem and have dinner. Most likely we will head back home after that. Greg usually prefers a late drive home to sleep in his own bed over a night in Phoenix. We'll see how the day goes. That is one thing we have learned is to be open to letting our feelings lead our actions after a long day of doctors, so we'll take an overnight bag just in case we decide to crash at Preston's.
I wish tonight was Sunday night and the surgery would be over tomorrow. Five more days. It seems like these 81 days have been mostly filled with waiting--well, that and shock. Hopefully tomorrow and next week won't bring any more shock and the waiting will be over. It is time to get this thing going. I'm sure I'll feel that way again in a few weeks as I wait for the next phase--chemo.
Tonight I spent some time reading my last few posts to Greg. I like reading them out loud to him. It gives me this surreal feeling like I'm reading someone else's story instead of my own. He and the kids struggle reading the blog sometimes because it is too real, too close, and brings this to the surface too much. I'm okay with that. It is a hard thing to face. For me the best part of reading the blog is reading and reflecting on the comments people post. I haven't found the courage to go back and read the blog from the beginning yet. Maybe I will after surgery when I'm bored stiff for two weeks before I can return to work. But I do take time to read everyone's comments and words of encouragement from the beginning. To date, thirty one different people have posted comments, many of them multiple times. Though this may bore some of you, I want to take a minute and reflect because each and every person reading my blog means something special to me, even the many who don't post comments (so if you get bored, just skip to the next paragraph :). Stephanie, my secretary, was the only person to first post replies when I started and she has continued to be encouraging and inspiring. Greg posted next followed by Regina, my former secretary and Jenny, a former co-worker who has continued to post comforting words. Other former co-workers sharing their thoughts include: Linda and J.T. Cotter, both teachers with whom I taught, my former boss, principal, and mentor John Bonefas and his wife Sue, and my favorite former school secretary, Joyce Johnson and her wonderful husband Del who worked with me as head of maintenance for the district. Other teachers I still work with, Natalie Reynolds and Mike Green have cheered me on as well. Five relatives have been kind enough to add words of reassurance: My dad, of course, a wonderful second cousin, Michael Warren and his wife Ann, another cousin Mary, my Aunt Mary, and my beautiful niece Jennifer. I have been pleasantly surprised by the amazing reassuring words that have come from some of my former students. One of my newspaper editors, Vikki--my kiddos always called her Vikki Mouse-- posted along with Darrin one of my first teachers' aides. Paul, a yearbook student, and most surprising, Sandra, one of my newspaper editors with whom I had lost contact also posted. Interestingly, her post lead to a reunion between her and another former student of mine, Candy, who works at my doctors' office and has been following my blog. I loved hearing that story! Friends have surrounded me with love and have given great hope with post of reassurance including: Gayrene, our former neighbor, Irene, one of Greg's clients who has become a family friend, Jan Clark who joined my surgery support team, Michelle Lopez, our lake friend, Margarete who has lent an ear to Greg through this, Diane, a friend who touches both Greg's and my heart, Christy and Preston, friends who understand medical challenges, Patty, my ballooning friend, John and Jennifer Campbell, good friends from Tucson who love the lake too, and my best lifetime friend from childhood, Peggy, who has seen me through all of life's challenges. Finally, there are posts from friends I don't know who have posted in support and understanding which include Ronnie McEuen, a girl from my high school years who is also facing breast cancer now, Kim Buck, a friend through Brooklyn who fought breast cancer 8 years ago and survived, and Kelly, a friend through family who is a nurse and is learning the patient's perspective through my blog. Besides these 31 supporters who have posted comments, there have been cards, emails, and gifts from co-workers like Linda Hedges and Wanda Evans, both caring teachers with whom I work, Susie Case, my go-to girl who helps with anything, our amazing football friends, Vicki and Henry Day, another former yearbook editor and friend, Shawna Kruger, our best friends' mother Peggy Morris, wonderful current co-workers Carol Elders, Bryan Williams, and Gail Curtis, a caring boss, Dr. Tregaskes, and my amazing local doctor who has been kind enough to let me text her and has been there for me from the beginning. She is one of my angels. Childhood friends Paula Eaton who is also fighting her own battle with cancer, and Heidi Teadt who is helping her mother battle cancer have been wonderful resources and great comfort. And Greg and I would both be lost without our best friends, Mike and Suzie Bertetto from Albuquerque who have driven countless hours, spent numerous days, and listened, helped, and supported us through the shockwaves of these last 81 days. And though she can't bring herself to read my blog, I wouldn't make it through this without my best friend Trina Brown who means the world to me. She lost her dad to cancer and is going through cancer with her mother now while still supporting and worrying about me through this. And for those I didn't mention, it is because of lack of space rather than lack of appreciation for all of your support. THANK YOU!
When I first started the blog, between 60 and 90 people read each post with the average being somewhere in the 80's. For the last eight posts, the average has been between 150-170 readers with the highest being 196 readers. What I hear the most is how the blog is helping educate people about cancer as well as truly revealing the feelings--the good, the bad and the ugly--that cancer patients go through. That is helpful for me. I believe God does not make bad things happen, but instead, He finds ways to make good out of bad. Your support is the good that is happening to me. I hope this blog is also making something good for others.
So as this new year begins, we are definitely facing an uphill battle still, there are many, many challenges infront of me still, and the road is long. I am scared, make no mistake about that. Sometimes I'm angry, often I'm confused, and many times I'm impatient. But I am grateful that this world is filled with great doctors who care about me as a person and care about curing me, I am grateful that the Lord has angels in heaven and here on earth watching out for me, and I am grateful for the love, support, encouragement, inspiration, hopefulness, and kindness in which you all have surround me. Thank you from the bottom of my heart. Keep reading, keep praying, keep supporting keep helping me be patient, keep being my friend and don't give up on me or forget about me as I face this. Together, let's kick this thing!
It was two months ago tonight the word cancer entered my life for the first time in a very personal way. Wow, so much has happened and I've learned so much in these past 61 days. Tomorrow we travel to Phoenix for another doctor-filled day. Melissa, Dr. Byrum's assistant, called today. She said it was ridiculous the schedulers were having me spend the night in Phoenix for pre-op appointments spread over two day, so she juggled schedules and found a way to get me in to see all four doctors tomorrow. Bless her! She has turned out to be super caring and amazingly accommodating for us. She's the one who called last Friday and finalized the surgery details with me as well. I've been so grateful for her help as well as and Adrianna's, my nurse navigator.
So tomorrow morning we will leave early enough to make it to Mesa for a 12 o'clock appointment with the lymphedema specialist, and then we will see Dr. Schlumbrecht at 1, Dr. Byrum at 2 and Dr. Munoz at 3. Greg's computer needs a little doctoring too so we have an appointment at the Apple Genius bar at 4:30 and then we are heading to help a friend with an iPhone problem and have dinner. Most likely we will head back home after that. Greg usually prefers a late drive home to sleep in his own bed over a night in Phoenix. We'll see how the day goes. That is one thing we have learned is to be open to letting our feelings lead our actions after a long day of doctors, so we'll take an overnight bag just in case we decide to crash at Preston's.
I wish tonight was Sunday night and the surgery would be over tomorrow. Five more days. It seems like these 81 days have been mostly filled with waiting--well, that and shock. Hopefully tomorrow and next week won't bring any more shock and the waiting will be over. It is time to get this thing going. I'm sure I'll feel that way again in a few weeks as I wait for the next phase--chemo.
Tonight I spent some time reading my last few posts to Greg. I like reading them out loud to him. It gives me this surreal feeling like I'm reading someone else's story instead of my own. He and the kids struggle reading the blog sometimes because it is too real, too close, and brings this to the surface too much. I'm okay with that. It is a hard thing to face. For me the best part of reading the blog is reading and reflecting on the comments people post. I haven't found the courage to go back and read the blog from the beginning yet. Maybe I will after surgery when I'm bored stiff for two weeks before I can return to work. But I do take time to read everyone's comments and words of encouragement from the beginning. To date, thirty one different people have posted comments, many of them multiple times. Though this may bore some of you, I want to take a minute and reflect because each and every person reading my blog means something special to me, even the many who don't post comments (so if you get bored, just skip to the next paragraph :). Stephanie, my secretary, was the only person to first post replies when I started and she has continued to be encouraging and inspiring. Greg posted next followed by Regina, my former secretary and Jenny, a former co-worker who has continued to post comforting words. Other former co-workers sharing their thoughts include: Linda and J.T. Cotter, both teachers with whom I taught, my former boss, principal, and mentor John Bonefas and his wife Sue, and my favorite former school secretary, Joyce Johnson and her wonderful husband Del who worked with me as head of maintenance for the district. Other teachers I still work with, Natalie Reynolds and Mike Green have cheered me on as well. Five relatives have been kind enough to add words of reassurance: My dad, of course, a wonderful second cousin, Michael Warren and his wife Ann, another cousin Mary, my Aunt Mary, and my beautiful niece Jennifer. I have been pleasantly surprised by the amazing reassuring words that have come from some of my former students. One of my newspaper editors, Vikki--my kiddos always called her Vikki Mouse-- posted along with Darrin one of my first teachers' aides. Paul, a yearbook student, and most surprising, Sandra, one of my newspaper editors with whom I had lost contact also posted. Interestingly, her post lead to a reunion between her and another former student of mine, Candy, who works at my doctors' office and has been following my blog. I loved hearing that story! Friends have surrounded me with love and have given great hope with post of reassurance including: Gayrene, our former neighbor, Irene, one of Greg's clients who has become a family friend, Jan Clark who joined my surgery support team, Michelle Lopez, our lake friend, Margarete who has lent an ear to Greg through this, Diane, a friend who touches both Greg's and my heart, Christy and Preston, friends who understand medical challenges, Patty, my ballooning friend, John and Jennifer Campbell, good friends from Tucson who love the lake too, and my best lifetime friend from childhood, Peggy, who has seen me through all of life's challenges. Finally, there are posts from friends I don't know who have posted in support and understanding which include Ronnie McEuen, a girl from my high school years who is also facing breast cancer now, Kim Buck, a friend through Brooklyn who fought breast cancer 8 years ago and survived, and Kelly, a friend through family who is a nurse and is learning the patient's perspective through my blog. Besides these 31 supporters who have posted comments, there have been cards, emails, and gifts from co-workers like Linda Hedges and Wanda Evans, both caring teachers with whom I work, Susie Case, my go-to girl who helps with anything, our amazing football friends, Vicki and Henry Day, another former yearbook editor and friend, Shawna Kruger, our best friends' mother Peggy Morris, wonderful current co-workers Carol Elders, Bryan Williams, and Gail Curtis, a caring boss, Dr. Tregaskes, and my amazing local doctor who has been kind enough to let me text her and has been there for me from the beginning. She is one of my angels. Childhood friends Paula Eaton who is also fighting her own battle with cancer, and Heidi Teadt who is helping her mother battle cancer have been wonderful resources and great comfort. And Greg and I would both be lost without our best friends, Mike and Suzie Bertetto from Albuquerque who have driven countless hours, spent numerous days, and listened, helped, and supported us through the shockwaves of these last 81 days. And though she can't bring herself to read my blog, I wouldn't make it through this without my best friend Trina Brown who means the world to me. She lost her dad to cancer and is going through cancer with her mother now while still supporting and worrying about me through this. And for those I didn't mention, it is because of lack of space rather than lack of appreciation for all of your support. THANK YOU!
When I first started the blog, between 60 and 90 people read each post with the average being somewhere in the 80's. For the last eight posts, the average has been between 150-170 readers with the highest being 196 readers. What I hear the most is how the blog is helping educate people about cancer as well as truly revealing the feelings--the good, the bad and the ugly--that cancer patients go through. That is helpful for me. I believe God does not make bad things happen, but instead, He finds ways to make good out of bad. Your support is the good that is happening to me. I hope this blog is also making something good for others.
So as this new year begins, we are definitely facing an uphill battle still, there are many, many challenges infront of me still, and the road is long. I am scared, make no mistake about that. Sometimes I'm angry, often I'm confused, and many times I'm impatient. But I am grateful that this world is filled with great doctors who care about me as a person and care about curing me, I am grateful that the Lord has angels in heaven and here on earth watching out for me, and I am grateful for the love, support, encouragement, inspiration, hopefulness, and kindness in which you all have surround me. Thank you from the bottom of my heart. Keep reading, keep praying, keep supporting keep helping me be patient, keep being my friend and don't give up on me or forget about me as I face this. Together, let's kick this thing!
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