Chemo Marathon 1 Ends as Chemo Marathon 2 Begins...............

4/29/13--Monday--Day 198--Halfway Through Chemo

As I ended my last post, I was hoping to postpone chemo #10 as the numbness in my feet had become quite severe and my fatigue had built to a point where I finally had to leave work early for the first time ever.  I called the doctor's clinic Wednesday but Dr. C was out for the week, being replaced by Dr. B (kind of funny) or Dr. Bahadur.  I explained that Dr. C said to stop for a week if the numbness was becoming too intense.  The nurse returned my call saying Dr. B wanted to proceed with chemo, or at least labs as well as have me see Michelle, Dr. C's assistant, so we headed for Mesa the next morning, April 11th.  Michelle's recommendation to continue the chemo, despite the severe numbness, seemed a contradiction to what I heard Dr. C say when we postponed chemo #6, but at that point, I was frustrated and not going to argue.  I figured I had three more Taxol treatments to go so I would just get through them hoping for the best.

Each time I have chemo, I now have a certain nurse, Heather, access my port.  I'm beginning to feel quite special between Heather and Cheryl.  Heather works in the lab every other Thursday, and on the opposite Thursdays works on the infusion floor.  For weeks it was taking two, three and even four attempts by different nurses to access my port.  Thank goodness for the numbing cream I put on in Globe, an hour before labs.  Heather would usually be called to assist and would be successful accessing my port the first time every time.  She finally said to only have her access it, whether she was in the lab or on the chemo floor because it wasn't fair I was having to get stuck multiple times each time.  She has been super wonderful, and up to now, hasn't missed yet.

After she accessed my port for chemo #9, the blood flow seemed slow and a bit sticky so they packed the port with a syringe full of Hepburn and let it sit while my labs processed.  By the time I was ready for chemo, it was flowing normal again.  As we started with chemo #10, the port was having the same issues, so after a flush of Hepburn, Cheryl decided to do what they kindly refer to as a "Rotor Rooter" before I left after chemo #10.  That is a special medication they inject into the port to eat away the gunk that may be built up in the port.  I figured with my protein S deficiency, maybe my blood is thicker than normal and has more tendency to build up in the port.  Whatever it was, since I was "Rotor Rootered" I have had no problems with my port flowing well.

Cheryl ran chemo #10 super slow again and I had no reaction, thank goodness.  It  makes for a long day, but not reacting makes it time well spent.  Following chemo I stayed the night at my Aunt Mary's with my sister, Sharon, and her husband, Harry, who were still here from Michigan.  Greg went home as he was way behind on some of his website work.  It has been tough for him and I both to keep up with our workload when we are only working four, and sometimes three-day work-weeks.

Friday morning Sharon, Harry and I headed to Cottonwood.  My dad had decided that since my sister was here, it might be a good time to go through my mom's closets and drawers as we have not touched anything of hers since she died last July.  I agreed but I knew I was only going to have so much energy so I would do what I could.  What I didn't expect is the onset of diarrhea.  I had had some weeks earlier, but it passed quickly as I hoped this would too.  It was very draining on a body that didn't have much reserve energy to begin with.  By the time we finished for the day Friday, I was beat, but we had made it through mom's closet and bedroom drawers.  Saturday we started on the extra bedroom closet and drawers but after the first section, I was down for the count.  When I hit that wall of exhaustion, I don't even feel like I have the energy to move my body.  I laid on the bed and watched as Sharon went through the rest of the clothes.  It seemed trips to the bathroom was all I could muster so most of the day Saturday was spent resting in between small spurts of energy where I would help with a few things then sit or lay down awhile.

A lot of people who love and care deeply about me have been critical about me trying to do too much.  That weekend was a perfect example of why they don't need to worry, because when my body needs to stop, it stops and down I go for a bit.  It isn't really a decision of mine to push on or not because my body just stops.  It's the first time in my life where I've experience fatigue winning over willpower, no matter what.  I do know I can't stop my life, or trying to live it, for cancer.  I would rather face fatigue than stop living and give in to cancer completely dominating my life.  Maybe that's part of why continuing to work has played such an important part of my mental attitude.  I have learned to be cautious, approaching activities now with the realization that I may not complete them, and that's okay, but it's also okay to try them.

Sunday I felt better.  Sharon and Harry drove me to Apache Lake, conveniently located half way between Cottonwood and Safford.  Greg met us there with the boat figuring we might as well try a day-trip at the lake since we had to drive past it anyway.  Sharon went on the boat with us as I drove and stay under the canopy the whole day.  I was pleased that while the diarrhea was looming in the background, it stayed at bay while we were on the boat.  Despite the warm temperature, I was still cold.  Interestingly, I have stayed cold all the time ever since my surgery in January.  Of course having numb feet only adds to the feeling of being cold, but even in the hot sun, I was cold.  I stayed covered under the boat canopy with my floppy sun hat keeping my head warm, towels wrapped around my legs keeping them warm, and a cover-up over my body keeping it warm.  Needless to say, it was easy to practice sun avoidance as Dr. C has instructed being all covered up to keep warm.  Greg water skied, air chaired, and wake surfed as Sharon flagged and I drove.  We ate lunch at the far west end by the dam and it wasn't until the trip back that I became nauseous, a feeling, I didn't know at the time, would stay with me for the next few weeks.  I decided eating on the boat and then traveling back on rough water was something I would avoid in the future.  I was glad I wasn't having to drive home as I took my first nausea pill in weeks.

The following days the fatigue continued though I managed to work each day.  Thursday, chemo #11 went well with no reaction, though I was still fighting nausea, exhausting fatigue and diarrhea. I am convinced my body just reach a toxic level of the Taxol or something because it was the worse I've been through this whole chemo journey. Following chemo #11, our friend, Suzie, from Albuquerque, was celebrating her 50th birthday with a party and she and Mike desperately wanted us to attend.  We hadn't been to Albuquerque since the Balloon Fiesta in early October, so it was important to try and go.  We came home and slept after chemo #11 and headed out for the 6 hour trip to New Mexico Friday morning.  At the party Friday night, I visited with many of my ballooning friends, but after socializing about an hour, I was exhausted.  I went to our room to feed Sierra, our dog, and instantly fell asleep on the bed while she was eating.  I don't know how long I slept before Greg came looking for me, but after that I was finished for the night.

Hitting that wall of fatigue has resulted in familiar symptoms now.  First, according to Greg, I get exceptionally white and sometimes start trembling.  I become very cold and shiver, even when covered in blankets.  Then come the tears.  For some reason, I start crying, even when I don't feel like crying.  It usually passes quickly and it seems there is nothing I can do to avoid the steps.

I was glad I had began carrying nausea pills in my purse as it seemed to be a new addition to my life.  While I was told I could take Imodium AD for the diarrhea, I chose not to in fear of then becoming constipated.  The diarrhea had become mostly manageable so I just tried to increase my water intake to avoid becoming dehydrated.

Saturday morning after sleeping in, we went out to breakfast then to a matinee and that was it for my day.  I was having trouble walking, was cold, and spent the rest of the day resting on the couch.  By Sunday, however, I felt better, other than some nausea on the trip home.

The Monday through Wednesday following our trip to Albuquerque, after two weeks of feeling yucky, I finally felt better.  I had a little more energy and life seemed more manageable though I still collapsed in the recliner every day after work. Thank goodness I have a job where I sit at a computer all day.  I can't imagine working a physical job going through this, though I know many people do.

Last Thursday, April 25th finally came and with it came chemo #12, my final dose of Taxol.  This marked the half way point of chemo treatments and the end of Taxol, which hopefully will mean the end of numb feet.  Chemo #12 once again came with no reaction, but I had a tough day Friday following this dose.  It was only the second time at work where I hit the wall and actually cried, something I have try desperately not to do at work.  To make it worse, I was in the middle of a meeting with people from another department discussing an important change.  We were on the phone with a vendor on speaker phone at Carol's desk where I had walked over to ask some questions.  While standing, I became weak, shaky, and felt like I was going to pass out.  I quickly took a chair from a co-worker so I could sit and listen and he relocated to my desk.  I kept my back to the rest of the people in the office while looking at the phone and the computer screen at Carol's desk.  That helped me hide the tears that suddenly came.  Carol was so good.  She inconspicuously handed me some tissue as I breathed through the episode drinking some water as it passed.  Thankfully no one else in the room saw my face or knew what had happened or that I had cried.

This Thursday I start the next phase of chemo, which includes three drugs, but only once every three weeks for the next twelve weeks.  At least we will save some trips to Mesa.  The chemo drugs include Adriamycin, Cytoxan, and FU5.  I have been told that while this combination of drugs won't cause numbness like the Taxol did, it will leave me more fatigued, make me more nauseous, and will have a much bigger affect on my blood numbers making me more susceptible to infection and becoming neutropenic.  So far I have heard the second of the three weeks will be when I am most susceptible.  Thursday will be an early and busy day so we will go over Wednesday evening.  I have a 7:30 lab appt, 8:30 Dr. C appt to learn about this next phase, 9:30 new chemo drugs infusion appt, 2:00 Dr. Matt (Schlumbreck) follow-up appt. and a 3:00 fitting for a compression sleeve for my arm to help reduce the chances of lymphedema when I travel or do increased activity.

As I prepare for this next phase, I am excited to be halfway through the chemo regiment, but I am not looking forward to this being the harder half.  I sometimes question how I will ever get back in shape after this whole treatment regiment is over.  I feel useless, lazy, and disappointed in myselfe many times as I just don't have much endurance at all.  Even this past weekend at home, I could help Greg some with a fence project we are doing, but then I would have to sit and rest.

But, we have made it through our first marathon and are starting our second of three total, radiation being the third.  From what I've been told, this next race will be the worst of the three marathons we have to run, but I have already shown I can do 12 weeks, so I know I'll make it through this next 12 weeks.  For now I am going to try to focus on the fact that we are halfway through the chemo!

So Much Has Happened........

4/9/13--Tuesday--Day 178--Two Guardian Angels Looking Out For Me!

Thank you, my friends, for hanging in there with me.  I know I haven't posted in almost a month. So much has happened, not just with my cancer, but with other parts of my life.  I've had three chemo treatments since my last post--chemo #7, #8 and #9.  My feet have become numb to the point of possibly postponing my next treatment.  My body also seems to be having harsher reactions to the Taxol as it builds up in my system.  My exhaustion level is so much greater now as well.  In addition, for the last three weeks, the health of my 99 year old grandmother, with whom I was very close, declined and she finally passed away the evening of April 6th, exactly two months prior to her 100th birthday.

First, let me backtrack to my chemo treatments.  My dad joined us for the day for chemo #7.  Before we started infusion, I had an appointment with Dr. Cianfrocca.  I was glad my dad had the opportunity to meet her.  He had met Dr. Matt and Dr. Byrum in the hospital during my surgeries but this was his first time meeting Dr. C, who has also treated his and my mom's best friend, Wanda, who lives down the street from them in Cottonwood.

For chemo #7 on 3/21/13, Cheryl was gone so I had a different nurse.  She changed a few routines and I had a reaction during treatment.  We had to laugh because this was the second time my dad had come to chemo and both times I had reactions.  On that day, the nurse decided to push the Pepcid instead of dripping it.  That means she injected it in the IV line instead of dripping it through an IV bag over a 15 minute period.  Injecting it quickly caused dizziness and a headache.  Once the Taxol started, about 30 minutes into the treatment, I had another reaction.  She stopped it for a little bit until it passed and then started it at a slower rate.  I seemed to be fine until she tried to bump it back up faster and the reaction returned, so we slowed it down once again.

Someone asked me what it means when I say I have a reaction and what does a chemo reaction feel like?  There are two ways to describe it.  First, think of a time when you were super scared and experienced an adrenaline rush.  Your senses become overactive and you feel tingly all through your body.  Imagine having that feeling for 20+ minutes.  I think that's why I have to sleep after a reaction.  My body is just exhausted.  I would also describe it as what it must feel like to have ice cold water shot through your veins.  You feel a cold, tingly sensation that starts at one end of your body and runs all the way through.  Reactions sometimes come with extreme dizziness and a headache as well.  Once the reaction subsides, my body feels exhausted and I just need to close my eyes.  Usually by the time I leave chemo I am okay, but my body is tired.

The Saturday following chemo #7, my 99 year old grandmother was put in a Hospice home for the second time in a month.  She had been healthy and mostly independent until recently.  She was diagnosed with cancer in her stomach just a few months before my diagnosis.  She underwent 25 sessions of radiation like a champ.  They called her the iron lady and she left no room for any whining from me when I go through it. While the radiation shrunk the tumor in her tummy, it had grown back and was causing problems again.  So on Sunday, we made another trip to Phoenix to visit her.  She was already recovering and feeling better and we spent most of the day outside on the porch at the Hospice house visiting.  By Sunday afternoon however, my feet were becoming more numb and I had lost much of my energy by the time we headed for home.  I had trouble even walking to the car and slept most of the way home.

For chemo #8 on 3/28/13, my sister, Sharon, and her husband, Harry, from Michigan had come come to town due to my grandmother's declining health so they joined us at chemo.  My feet had recovered some from the weekend, but were still getting a little more intense on the numbness.  Cheryl was back.  She also injected the Pepcid instead of dripping it because the symptoms I described from the last chemo were not known side effects of Pepcid.  She injected the Pepcid slowly, over a 3 minute period, but once again, shortly after my head started spinning.  She did some more in-depth research and sure enough, less than one percent of patients experience dizziness as a side effect of Pepcid.  Just after she read that, I explained my headache, which had lodged between my right eyelid and the bridge of my nose. Sure enough, once again, less than one percent of patients have sudden and severe headaches shortly after receiving Pepcid.  We waited the 30 minutes required after the Pepcid before starting the Taxol.  She ran the Taxol at 150, the slower rate we had been using all this time, but my body reacted once again.  She stopped it and within 20 minutes, the reaction subsided.  When she restarted it, she ran it at an even slower rate, 125, and I was able to finish with no reactions.

I didn't recover well from chemo #8.  Greg took me home Thursday night after seeing my grandma who had been released from her second Hospice house because she was doing so much better.  On the way home, I just didn't feel well.  All day Friday I could barely muster up enough energy to cook, eat, and clean up before returning back to the recliner.  I had lots of plans to do many little projects around the house, but my body wasn't cooperating.  Brooklyn was on spring break in Dallas with her aunt.  I did manage to work to rearrange her flight so she could fly to Phoenix on Sunday instead of back to Idaho so she could see her great-grandmother for Easter.  Saturday morning I had a little more energy, but not much.  Most of the morning I stayed down, not having the energy to do much.  By early afternoon, I felt a little better.  I wanted to make iced sugar cookies to take to my dad, my grandma, and my aunt for Easter Sunday the next morning.  That was a lot of work, but it was so very important to me.  Easter was my mom's favorite holiday and she was the queen of iced sugar cookies.  I wanted to make them to honor her and because they are also my dad and grandma's favorite cookie.  Thank goodness I seemed to have more energy Saturday afternoon than I had had since before chemo.  With the help of God, I made cookies in honor of my mother and our first Easter without her, and for my grandmother, who absolutely loves them.

We headed to Mesa Easter morning.  Greg and I spent a wonderful Easter with my grandma, my dad, my Aunt Mary, my sister Sharon and brother-in-law Harry, Preston, and Brooklyn.  Earlier in the day, my two cousins were there, Aunt Mary's sons Jeff and Sean.  Later in the day my wonderful niece, Jennifer, and her two boys joined us as well.  Strength-wise, it was a really hard day for me.  Me feet had become progressively worse and my energy level was shot.  It is SO very hard to want to do what you usually do to jump in and help, but not have the physical strength or endurance to really even move much.  I enjoyed most of the day from the couch with my feet up and my head back, but I was happy to be there.  My grandmother said it was the best day ever, and she smiled and laughed and enjoyed every moment.  My daughter, who thought it would be the worst Easter ever because she would be away from us, had one of the her best Easters because she got to be home with family.

Chemo #9 came the Thursday following Easter.  This time my daughter Brooklyn, who was home for the week from college in Idaho, joined me.  It was nice to have her there.  She has been away at school for all of the cancer stuff and has felt badly not being here to support me.  During chemo, Cheryl was my nurse again and we decided to step back and completely do everything as slow as possible.  We dripped the Pepcid over 15 minutes and I had no reactions.  That was nice.  We slowed the Taxol to 125, and while that extended the chemo time from 1 hour to 2.5 hours, I had no reactions! Yay!  So that was the secret.  We were simply going to have to go super slow with everything to avoid reactions at this point.

My sister was going to join me for chemo again, but my grandmother had had a bad night so she was staying to help my aunt.  We went to my Aunt Mary's house after chemo, like always, but this time my grandmother looked like a completely different person.  I was truly shocked.  I stayed with her, held her hand and talked to her until the transport came to move her back to a Hospice house for the third and what I knew was the final time.  Once she was settled in her new room, I spent the evening by her side along with Greg, Brooklyn, Aunt Mary, Dad, and Sharon and Harry.  The shock of how quickly she had declined was confirmed when there was a shift change.  The night staff came in and introduced themselves.  Aunt Mary recognized Alec and said, "Hi Alec.  Alec is one of the nurses who cared for grandma before."  Three weeks prior Alec loved visiting with my grandma when she was first put in this Hospice facility.  Alec didn't recognize grandma as she starred at the woman in the bed.  Aunt Mary stood up and walked to the bed, and suddenly Alec gasped, put her hand over her heart, and said, "Emma!  It's my sweet Emma!" when she finally realized the lady in the bed she was staring at was grandma, this vibrant  lovable, amazing woman she had cared for three weeks ago.  Goosebumps came over my body as I watched her sudden reaction and shock.  That's just how much grandma had changed physically in just a few short days.

The next morning, my exhaustion level was incredibly high again, but I spend the morning in a chair with my feet up by my grandmother's side as she was finally resting peacefully.  Unfortunately, by early afternoon, I hit that exhaustion wall again and I could stay no longer.  I was so incredibly lucky though.  My grandmother woke up for the first time all day.  She instantly knew who I was calling me by name and we talked, smiled, hugged and truly said our heart-felt good-byes.  I knew it was going to be the last time I saw her.  I had a strong feeling she would pass the next day, Saturday.  She told me, "You're going to make it through this Susan, I know you will" meaning the cancer and I confirmed with her that I would.  She then said she loved me with all of her heart and I told her the same.  Being her wonderfully polite self, she thanked me for the sugar cookies and smiled and told me how much she loved them.  I was fighting the tears as I held her and looked into her eyes seeing her kind soul.  Between the exhaustion and my emotions, the tears finally started flowing down my check as she and I said good-bye to each other for the final time.  I moved to the chair out of her sight as I could no longer keep myself from crying.  Brooklyn and Greg spent time telling her goodbye as well. Walking out of that room was one of the hardest things, but my body had truly had it and I knew I had to go home and rest.  Saturday and Sunday we had an event in Tucson that we could not cancel and as much as I wanted to be with grandma, I also knew it was time for her to have her children at her side and Aunt Mary and my dad would be there where she needed them.  Saturday night at 11:45 she took her last breath with Aunt Mary at her side, like always, as she went to heaven to join her husband, her son, Dick, my mom, my sister, Sandra, my cousin, Cheryl, all of her siblings and so many more who have passed before her.  I love her so much and will miss her dearly.  She and my mom were the two most important women in my life, and I lost both of them within 8 months at a time in my life when I needed them both so much.

I went back to Mesa Sunday evening and spend the evening and the next morning with my Aunt Mary, my dad, and my sister and brother-in-law.  I needed to be by family and wish I had not had to leave Friday.  But like the last 15 years, my Aunt Mary stood strong by my grandmother's side as she left this world.  Aunt Mary is a saint.  She has been by her dad's side as he died, and now by her mom's.  She was with her brother and my mom as they died, and was with her partner, Bill as he died.  She had dedicated the last 15 years of her life to taking care of her mother.  My dad has been there to help relieve her, especially this past year, and they both have so much to be proud of in being there for their mother every single time she needed anything.

I returned to work today.  I am strongly considering postponing chemo #10 scheduled for Thursday because my feet have become much worse.  I will make the final decision tomorrow.  My co-worker, Carol, asked if it could be related to the amount of stress I'm under.  I hadn't thought about that until she said it, but it is possible.  When I had to postpone chemo #6, it was the week my grandmother went in to the first Hospice house and the week we had to accept that the end was more near than we had hoped.  Now the second time the numbness is worse is this stressful week of losing her.  Hmmm, it's a thought.  Who knows?  The numbness this time is on the bottom of my feet rather than fully concentrated in my toes.  It feels like that burning, stinging feeling you get when you slap your hand really hard on something.  My left foot also feels like there is a large blister on the back part of my arch.  I keep asking Greg to find it and pop it because I swear it's there, but he keeps saying there is nothing.  We will see how they feel tomorrow and make the decision of whether to cancel this Thursday or not.

As this has all ended, I am going to believe the circle of bad events has come to a close.  My grandmother died on April 6th, exactly two months, to the day, prior to her 100th birthday.  But April 6th is also the day that one year ago, I had my foot surgery that ended up turning into RSD.  So April 6th, 2012 started the chain reaction of bad events and I am going to believe that April 6th, 2013 has closed that circle.  With my mom and now my grandma both up in heaven, my life surely has to be even more blessed with two Guardian Angels looking out for me.

Back On Track ...........

3/17/13--Sunday--Day 155--So Far, So Good

It's been three days since chemo #6 after taking a week off.  While some of my toes remain numb, the good news is, they haven't become worse.  My last two toes on my left foot and my little toe on my right foot are still numb.  The balls of both feet still tingle with a numbing sensation, the left worse than the right, and while the numbness has become a bit more intense, it hasn't spread, thank goodness.

Friends have played an important part of getting through this emotionally challenging week of realizations.  Last weekend, our good friends, Mike and Suzie came from Albuquerque, then Wednesday we drove over the night before chemo and spent the evening with our good friends, Paul and Diane.  Both were much needed.  When you're uptight, anxious, or down, sometimes you just need to spend time with people who care.  Even though they can't really fix anything, or do anything, just being around them makes you smile and feel better.  Talking, relaxing, and laughing did a world of good to change my outlook.

We were anxious to see Dr. Cianfrocca on Thursday even if it meant having to be at labs by 8:15AM.  Her explanation of the numbness was basically, the numbness isn't always permanent, but there is no way to guarantee that it will go away.  So the new game is, we have to stop the Taxol BEFORE the numbness gets to a state that would inhibit my mobility should the numbness be permanent.  There is a different drug, Taxotere, which we could switch to, but Dr. C said it wasn't as effective and it had other bad side effects so it was Dr. C's last choice of options.  She wanted me to stay on Taxol, if at all possible, because it is the best drug to treat breast cancer.  She explained that in clinical trials, Taxol had been shown to be the most effective drug when given in 12 weekly doses; however, after the study, researchers amended the study showing that as long as the 12 doses were given within a 16 week period, it was just as effective.  So, what does all of this mean?  Well, first, it means skipping a week between chemo #5 and #6 didn't hurt anything.  It also means that should my feet start to go numb again, I could skip up to three more times and still finish the 12 treatments within 16 weeks.  Dr. C suggested we go ahead with chemo #6 at the same strength, and see how the week goes.  If the numbness comes back, which so far it hasn't become as bad as it was, then she will look at possibly lowering the dose this next week.

So after labs and seeing Dr. C, we headed upstairs to start chemo.  Cheryl was my nurse once again.  All went well with the infusion, although I did get a little sleepy.  On the way home, we stopped for a few minutes to see my grandma, aunt, and dad then headed home.  Friday morning I went to work as normal, but by the afternoon, I was struggling.  When I left work, I came home and laid on the floor putting my feet up on the couch hoping to help drain some of the poisons from my feet since they had been down all day.  While laying there, I progressively got worse.  I was exhausted, my body ached, the palms of my hands burned (that was a new one), and I was nauseous.  Greg made me take a nauseous pill and I was finally able to get some toast down and then went to bed.  Saturday morning I woke up and felt fine.  I was glad my feet hadn't become more numb.  I worked in the yard most of the day with Greg.  I had to take it slow, take lots of breaks, and drink tons of water, but I managed to work the whole day.  Sunday I woke up feeling fine once again.  I worked completing small tasks around the house most of the day with no problems.  Once again, it just proves that the effects from all of this are unpredictable as to when they hit.  I was thankful I only had a bad day on Friday afternoon this week.

I laughed telling Greg my body appreciated feeling good and having the week off last week so now it is rebelling after starting the Taxol again.  We are both keeping our fingers crossed that the numbness will not spread or get any worse.  After talking to Dr. C and putting everything into perspective, I've come to accept that if I have to live with some neuropathy for the rest of my life in order to truly kill the cancer that may still be in my body, at least I'll be alive and it will be okay.  I know that when we took a break from the Taxol, some of the numbness subsided, and I am keeping a positive belief that when we stop the Taxol all together after another six treatments, the numbness will eventually go away completely.  So while I am still on that difficult back side of the marathon, I have refocused on why I'm running it--a perspective that has definitely put me Back on Track!

Sometimes There's Just a Down Side..............

3/12/13--Tuesday--Day 150--The Backside of the Marathon

It's been a tough few days, not necessarily physically, but emotionally.  So much has happened in these last five months.  In one sense, October seems like forever ago--in another, it seems like just yesterday.  But through it all, I've tried really hard to keep a positive attitude.  I tell myself that this is just a chapter in my book, but for many, cancer will be a part of the rest of their story.  I tell myself that breast cancer is a curable cancer, but many live knowing they will die from a terminal cancer.  I tell myself cancer will only have stolen a year from my life, while others spend years fighting it.  I tell myself that in six more months, this will be finished and my "normal" pre-cancer life will return, but I'm starting to realize cancer has changed my life forever.

So while I try to stay positive, every once in awhile, it's hard--really hard.  There is just a down side.  You see, I'm sort of on the back side of the marathon--that dark side where there are no crowds around and you have to run all by yourself.  At the beginning, there are tons of people encouraging you, supporting you and telling you that you can do this.  And they have never left.  They're still at the finish line waiting for you--waiting to cheer you on and let you know just how proud they are of you for being so strong.  But somewhere in between, there is this dark side that you have to run by yourself.  You know you have tons of supporters and you carry them in your heart, but for now, you are alone because no one else is allowed on this part of the course with you.

This is also the scary part of the marathon.  At the beginning, it was well lit, well laid out, and you were pumped up about conquering what was in front of you.  But now you have to navigate the course yourself adjusting to the varying terrain, the unpredictable weather, and the surprising obstacles you never imagined were out there.  And, as you do all of this, you're exhausted and just want to quit, but you know you can't.  You know you just have to keep putting one foot in front of the other and forcing yourself to keep going.  What other choice do you have?  This is the part of the marathon where you want to cry--where everything on your body hurts, and you continually wonder how you'll make it to the end.

Right now I am struggling as I realize, this marathon has changed me.  While the finish line is back where I started, when I reach it, I won't be the same person who started the race, neither physically nor mentally.  Running this marathon, I've received some injuries, and while I know they will heal, those parts of my body will never be the same.

This weekend I think the reality of the marathon I'm running finally set in. I realized cancer has permanently changed my "normal" life, and even when all the treatments and surgeries and medicines are over, I will never be who I was last October.  I guess I believed that cancer was going to steal a year from me, but when it was over, when I had finished all of the treatments and done everything the doctors told me to do, I would be back to "normal".  In reality, cancer and chemo will leave behind scars which may affect me the rest of my life.

Last week I skipped chemo because I developed neuropathy (numbness) in my feet.  While I knew that was a possible side effect, I thought once I was finished with chemo, the numbness would go away.  The more I've read, the more I realize there is a good chance the numbness may be a permanent condition.  On Saturday, my big toes woke up.  That was encouraging  They had been numb for 12 days.  On Sunday, my toes on my right foot seemed to be waking up leaving just the small toe and the ball of my foot numb.  On my left foot, I could feel two more toes which left my last two toes and the ball of my left foot still numb.  At first, I was excited because maybe this means the neuropathy is only a temporary condition, and maybe it is.  But as of tonight, there are no additional improvements.  I keep thinking to myself, "I'm 48 years old.  How in the world can I go through the rest of my life with numb feet?"  Plus, my two right fingers are still numb from the surgery.  Having my axillary and sentinel lymph nodes removed means going in a hot tube, something I've always loved, could result in lymphedema, so my hot tub days are pretty much over.  I can't give blood ever again because of the chemo.  Slowly I've started realizing, in October, when this is all over, I'm not just going to pop back to normal.  There will be a whole new normal in which I'll have to learn to accept and live.  And while I am grateful, and thankful, and very happy that I will be well and alive, I realize I will now have a large tail which will drag behind me from now on.  My new normal will be a world apart from my old normal.

Forgive me for what sounds like the "poor me's".  I guess it is.  I guess I'm just tired.  A year ago a crazy dark cloud came over me as what was supposed to be a simple foot surgery went bad.  Then my mom died and took a huge piece of my heart with her.  After that, Brooklyn moved away leaving us empty nesters.  While we missed our kiddos, we embraced this new phase in our life realizing we could recreate ourselves.  But that quickly turned into a nightmare as a simple lump became a simple cancer, which became stage 3 cancer, which led to lymph node removals, which led to a 12cm abdominal tumor, which led to a hysterectomy, after which chemo started which has led to numb feet that may be permanent, and I haven't even started the hard chemo of phase II.  So here I am, almost a year after my foot surgery still in the middle of this dark cloud.  And while I've stayed strong, I've kept smiling, and I've made my own sunshine as much as possible, I guess I'm just in the tired phase as I realize I have a long way to run on the backside of this marathon.

P.S. I really will be okay. I use this blog to record all of my feelings, even the not so happy ones :) I am thankful to be alive and I don't want anyone to worry that I've lost myself in self-pity. I'm still smiling and i know this path will get better :)

Chemo #'s 4, 5 and Almost 6--Our First Cancelled Chemo!

3/3/13--Thursday--Day 145--It's All Still Completely Unpredictable!

Sorry that it's been so long since I've posted.  It seemed like things had become so routine but just when you think you've got everything figured out and under control, chemo puts you in your place.

When I went in for chemo #4, the day after my last post, I had a completely unexplainable bad reaction for the second time.  The morning started by us leaving extra early because of a bizar winter storm that hit Arizona bringing snow even in Mesa and Scottsdale.  The Superior Mountains had been closed the afternoon before, so the morning of chemo, we left early driving by a desert covered in snow all the way through Superior.  With no delays, we arrived in town an hour early so we stopped at Kohls to look for some hats and scarfs since coordinating my wardrobe continues to be a challenge.

Our friend Jan and my dad both decided to meet us for chemo#4.  It is always nice to have company during the treatment because it makes the time go so much faster.  This time labs were a challenge.  The girl accessing my port tried twice but kept missing it.  Thank goodness for the Lidocaine cream.  That was the first time I realized my port was relatively deep.  She called for a different nurse who had accessed me before.  On the third stick they were able to access it successfully.  At that point I made a mental note of where they successfully accessed it relative to the scar so I could help if someone had trouble in the future.  After labs, we went up to the infusion floor and I was lucky enough to get Cheryl, the same nurse I've had each time.  She enjoyed meeting my dad and Jan.  We did everything exactly the same.  We did the slow drip for the Benadryl and Pepcid.  We waited 30 minutes between the Dexamethasone and starting the Taxol.  But for some reason, shortly after the Benadryl started, my head started spinning and I was dizzy.  It was bearable but after starting the Taxol, my feet started going numb again and the dizziness eventually forced me to sleep.  I was looking forward to visiting with my dad, but I slept through most of the treatment.  When I woke, I felt less dizzy so I didn't have a problem walking to the car, but my legs bothered me all the way home and I slept even more.  Cheryl recommended we talk with Dr. Cianfrocca at our next week's appointment and go either with an oral Benadryl or switch to a different antihistamine for the next treatment.  At that point, we were convinced the numb feet were a result of a sensitivity to Benadryl because it had only happened on chemo #1 and now chemo #4.  And the numbness disappeared the next day in both cases.

I went to work on Friday, as normal and that following Saturday, Greg went back to Phoenix for the drag races with Preston.  I was supposed to go to my Aunt Mary's to plan my grandma's 100th birthday in June, but unfortunately,  Friday night my grandma went into the hospital.  Since the hospital wasn't the best place for me to hang out, I decided to stay home Saturday and do some small tasks around the house.  Sunday we decided to completely relax to see if my activity level was adding to my bad Sundays.  We stayed in bed watching the Daytona 500 while it snowed outside (another strange Arizona storm).  Resting all day seemed to help as I had didn't seem to get sick at all.

On Tuesday, we decided to go visit my grandma in Mesa.  Despite our relaxing weekend, by the end of the day on Tuesday, my feet went numb and I started having difficulty walking as we left to head back home.  Greg and I were both confused.  Up to this point, I had only experienced the numbness in my feet on the days of chemo #1 and chemo #4 when I had bad reactions.  We had assumed it was part of the Benadryl reactions I seemed to have but having it on Tuesday made no sense.  We hoped it was because it had been a long, tiring day and it would go away by morning.  Unfortunately, it didn't.  Wednesday morning, the numbness was still there, though not as intense.  I was in a meeting all morning and the numbness was mild, but by 11, it was more intense and I was having to concentrate to walk.  By the end of the day,  I almost called Greg to drive me home.

Thursday brought another trip to Mesa and chemo #5.  Fortunately it was our four-week checkin with Dr. C.  I knew my chemo nurse, Cheryl, was working in the lab that day as the nurses all rotate to the lab to help access ports.  She successfully accessed my port so at least I was able to see her, even though she wouldn't be my chemo nurse for the day.  From labs we met with Dr. Schlumbrecht (AKA Dr. Matt), the gynecology surgeon, for our six week checkup.  After the exam, he was pleased with how well I had healed.  I explained that first two fingers on my right hand were still numb.  The doctors have known that they had been numb since the surgery and suspected that it was caused from my hand being bent for the nine-hour surgery.  They suspected I had a pinched median nerve which should heal on its own within six weeks.  Since it hadn't, Dr. Matt recommended I see the neurologist who saw me in the hospital as well as Leona, the lymphedema specialist I had been seeing.  She is also a physical therapist.  Other than that, he explained he would see me in three more months.  When I asked how often he would see me and for how long, he explained that at the next visit, they would do tumor markers (a blood test), and he would begin feeling more of my abdomen making sure there was no regrowth of tumors.  I will see him every three months for the first year, every four months for the second year, and every six months for years three, four, and five.

After Dr. Matt, we were scheduled to see the breast oncologist, Dr. Cianfrocca.  To our surprise, her assistant, Michelle, came in instead.  Dr. C had had knee surgery that week and while she had been seeing patients, she had started hurting and was going home.  So we asked Michelle all of the questions we had saved up for Dr. C.  The first was regarding my feet, which were still numb.  We explained how the numbness had started Tuesday and, while it is better sometimes and worse sometimes, it is always present.  We also explained how it created what I would call restless legs, especially while I'm sleeping or while riding in a car.  My legs just want to move, without me even realizing it.  She recommended we see our family doctor insisting that it was unrelated to the chemo.  That really threw me.  I told her that didn't really make sense since it began the very first day of chemo, had happened during chemo four, and now is regular.  She again said it would be a very A-typical situation since that wasn't a known side effect of chemo.  When she left the room, I was very uncomfortable and felt a little dismissed.  We were waiting for the nurse to come in and complete the visit when suddenly Dr. C and Michelle came back in.  Dr. C explained she was waiting for her husband to pick her up so wanted to go ahead and see me while she waited.  I was a little startled and felt somewhat odd since I had already asked our questions to Michelle, but I did want to discuss my feet being numb.  She immediately said tingling and numbness in the feet and hands is a known side effect of Taxol.  Greg and I just looked at each other because we had just been told something opposite.  Dr. C said it should go away when we stopped the Taxol but she could give me something to help relieve the symptoms.  She also said we could slow things down or change the Taxol if it was bad or got worse, but she suggested we see how the next week went so we agreed.

From there we headed to the infusion floor only to find out my blood had clotted in the tube and we had to redo the lab work so back down to the first floor we went.  While waiting another 30 minutes for the new lab work to be processed, we ate at the Bristro then headed back to the third floor.  We were taken back and, for the first time, had a different chemo nurse, Carolyn, since Cheryl was down in the lab for the day.  Carolyn called up my lab work and was concerned because my platelets were high, 650, when they had been 350 the week before.  It didn't make sense to me.  She called the doctor and just after doing so, she realized she had pulled up the wrong chart.  Oh my goodness!  It was like a day full of mistakes!!!!  My platelets were fine, in the 350's like they had been, and so we quickly proceeded.  That small mistake made me glad they have two nurses check the chemo before starting it.  Dr. C had decided to try me on Claritin instead of Benadryl since I had had such bad reactions.  Claritin is an oral med so we had to wait a little longer but it was worth it as it caused me no reactions.  I was also done with the Dexamethasone, the steroid, which was also nice.  Now it was just the Claritin and Pepsi before the Taxol.  Our friend Jan met us again to keep us company and Preston came this time as well.  Everything went flawlessly.  There was no sleepiness and no reactions.  My feet were numb, but didn't get any more numb than they had been since Tuesday.  Cheryl stopped by upstairs to see how things were going.  In addition, Leona came up to see me as well.  She said she had some physical therapy exercises that might help my hand numbness which she would show me next week at our appointment.  She suggested we try that as well as the chiropractor before going to a neurologist.  The trip home was good as well.  Though I had the numbness, the restlessness was less.  Physically, it was the best chemo session I have had.

Friday brought a little different story.  Though I went to work as normal, I did not feel well at all. From diarrhea to an upset stomach to just feeling completely warn out, suddenly Friday seemed to be my bad day.  I made it through the workday, and when I got home, even though I wasn't feeling well, we thought we would go on our normal walk, hoping that would help me feel a little better.  That was a mistake.  Though we only took the 1.75 mile route, by the time I got home, I was exhausted.  I went upstairs immediately and fell asleep for three hours.  When I got up, I was nauseated, which I haven't really been at all.  I was afraid I would be sick all weekend, but Saturday and Sunday I felt okay.  In fact, we worked doing small tasks all weekend and other than being tired, I felt pretty good, even on Sunday.  That's when I realized this is going to be completely unpredictable.  I was no longer going to be able to predict my bad day was going to be on Sunday or what my reactions were going to be.  All I knew was my feet were still numb, no matter what I did.

This past week I only worked Monday and Tuesday as we had to move Preston into his new apartment on Wednesday.   Both days my feet continued to be numb and by afternoon, I limped when walking.  We decided to look up side effects of Taxol and read a little about it.  Suddenly, Greg and I both started worrying a bit.  Most of the people who had posted said that the numbness either hadn't gone away after a few months off of Taxol or had not gone away at all and was permanent.  We had both thought we understood Dr. C to say that once the Taxol stopped the numbness would stop.  But that wasn't exactly what we were reading.  Though some posts said the effects were not permanent, it was unsettling.

Tuesday afternoon we decided to head to Preston's instead of gettng up early Wednesday.  Wednesday was a busy day as we moved Preston out of his second story apartment into another second story apartment across the courtyard.  If it hadn't been for the stairs, it would have been an easy move.  I realized going down stairs was much harder than going up.  That was because I had a hard time feeling my feet as they went down.  I also realized my up and down stairs trips had to be limited as I just wore out so quickly.  Instead, I focused on cleaning the old apartment while Greg and Preston finished moving everything over.  As expected, Wednesday night I was exhausted, but we all were.

Thursday we got up early and went to visit my grandma who was back home at my aunt's.  While the visit was short, it was nice to see her.  At the cancer center, labs went without incident and then we went to the second floor to see Leona.  She started by showing me exercises she wanted me to complete to help with the numbness in my right fingers.  She also recommended we see a hand specialist.  When we asked her if there was anything we could do about the numbness in my feet, she confirmed our fears about there being a chance this might be permanent.  She explained that there is a shield around the nerve, sort of like a straw called Myelin.  The drugs used in chemo are so caustic, they can eat into the Myelin causing pitting which exposes the nerves and causes the numbness.  Because our body doesn't regrow or repair our Myelin, it can be permanent.  She clarified that this is not always the case.  Many times it is temporary plus there is a drug that can help relieve some of the symptoms.  She explained the importance of catching it early and then either lowering the dose of Taxol or changing it all together for a different chemo drug.  She then decided to go to Michelle, Dr. C's assistant, and let her know I've been experiencing the numbness for the last nine days and see what they wanted to do.  When she returned, she said they were going to go ahead with the chemo today, and have me see Michelle next week.

As we left her office and headed to the elevator, I began to get more scared than I had been.  Tears suddenly welled up in my eyes and a slight panic set in.  I'm only 49 years old.  Cancer was going to take a year from my life, a toll on my body, but I didn't think I would have permanent damage after this was over!  I can't have my feet numb like this for the rest of my life!  I was suddenly scared.  As we got out of the elevator on the third floor, I went into the bathroom to pull myself together.  I can't panic.  Maybe this would go away.

We were called back to start the infusion and luckily I had Cheryl again.  As I sat down and she started asking me about any symptoms or reactions, I explained that last week went well with the Claritin but the numbness in my feet had been present for nine days.  She asked if it had affected my walking and I told her that as I got tired, it did.  She was very concerned and said she didn't feel comfortable proceeding until she talked with the doctor.  I explained the mixed messages we received the previous week between Michelle and Dr. C and that Leona had already talked to someone, but I wasn't sure who.  Cheryl decided she wanted to call herself.  She called the nurse who talked with Dr. C. who said we should not proceed with the chemo this week.  We were going to take a week off and see if the symptoms went away or became less severe and then we would see the doctor next week to decide how to proceed.  Cheryl suggested they would most likely lower the dose of Taxol I was receiving or change to a completely different chemo drug.  I was relieved, to be honest.  I would rather travel the safe road and be cautious then risk permanent damage because I didn't speak up.

So no chemo #6.  Though this would mark the halfway point of this first part of chemo, we are on hold.  Hopefully the numbness will subside over this week or at least become less intense.  Cheryl didn't know if this would delay everything by a week, or if they would just skip #6 and just move to #7 so I guess the doctor will let us know next week.  What I know now is just when you think you have it all figured out and you've found a way to try and live a somewhat normal life around all of this, you can't really count on anything because it's all still completely unpredictable.

Learning Lessons in Managing Life.........

2/20/13--Wednesday--Day 130--Life Continues Without Focusing on Cancer

The countdown continues as last week I survived chemo #3 and tomorrow I face chemo #4.  Last week we made the trip on Valentines' Day.  Before arriving at our 10 AM scheduled time, we stopped by Krispy Kreme donuts to get some treats for our friends at the Cancer Center.  Our first stop is always at the first floor lab.  The two friendly receptionists greeted me with a smile, as always, and were eager to hear how the Pretty in Pink party went.  They were complimentary of my new head attire and reassuring that shaving my hair before my hair fell out was the right thing to do.  They were also glad to be the first stop on my appointment list as the Krispy Kreme donuts were still warm :)

Accessing my port was again pain-free, thanks to the Lidocaine creme we put on an hour before arriving.  In the past, they also have sprayed a freeze spray before accessing it, but this time they informed me they stopped using the spray because the previous day a study was released that suggested the spray may cause tissue damage.  It's reassuring to see MD Anderson react so immediately to new medical information.  I'm not sure the freeze spray did much for me after the cream, but I'm sure the patience who didn't have the creme missed it.

After supplying the lab crew with donuts, we headed to the Infusion Center on the 3rd floor to wait for labs and be called back to start the chemo.  While waiting, I snuck back down to the 2nd floor to leave donuts for our friends in the doctors' offices. During chemo, I only see the doctors every four weeks unless there is a problem with my labs, so we don't see the people we've been so used to seeing regularly.  I gave donuts to the receptionists and left more for our two favorite nurses, Tia and Betsy, along with all of the doctors and assistants.

Back up on the 3rd floor, we finished handing out donuts to the receptionists as well as the nurses once we were called back.  I was super excited to have Cheryl as my nurse, once again.  Each time so far, Cheryl has secured a window seat for me and we've just established a great repport.  During chemo, Tia and Betsy came to find me to thank me for the donuts.  It was really nice to see them.  The infusion went flawlessly again.  Going slow is definitely the key.  I had my typical tomato soup and sandwich lunch served from the volunteers there while Greg packed a peanut butter and jelly sandwich and was super happy with his comfy chair he brings.  It's almost to the point of being routine now, so that's good.

Shortly after 3PM we were finished and ready to leave.  I made a quick stop on the 2nd floor at the Boutique of Hope shop where I purchased a few more caps to go with my outfits.  It has continued to be a huge challenge to coordinate outfits with head ware, but I'm starting to get a decent collection that's interchangeable.

With my hair gone, we brought the wig and headed to the wig shop to get it fit and trimmed.  Unfortunately, the wig shop was very busy, even though we had called ahead.  By the time we were finished, the wig looked great, very close to my real hair, but we had been there more than two hours and I was starting to fade.  As we travel this cancer road, we continue to learn more and more about my limits. We had three more stops to make, but I knew I was starting to feel the fatigue so I stayed in the car.  By Globe, however, I was nauseated and not feeling well at all.  That was the first time I've had to take a nausea pill since I've started chemo.  The rest of the trip was uncomfortable as, for the first time, my legs were tingly and numb.  Greg reminded me that we were usually home by that time.  Lesson #1 for this week--we are definitely limited on how long we can stay after chemo.

After sleeping, I was fine on Friday and went to work with no problems.  Saturday was relaxing and the weather was finally warm enough to start walking again.  We've been trying to walk to build up my endurance in hopes of helping me tolerate chemo better.  We have a few routes around the cotton fields mapped out and our normal walk is 1.75 miles and takes about 40 minutes.  It was a nice walk and Saturday ended with no issues.

Lesson #2, however, came on Sunday.  After waking up and having breakfast, we decided to go on a new route for our walk.  Big mistake.  Half way through the venture, I was beat.  I laid down on a bench trying to recover. After resting for a bit, we continued on, but within minutes, my feet were dragging, I was crying, and the fatigue was severe.  Greg wanted to call someone to pick us up, but I refused.  I was sad, mad, frustrated and determined.  Step after step, many with my eyes closed and some with tears, we finally made our way home after an hour and 15 minutes.  When we got home, I immediately went upstairs and went to bed.  I slept until evening and felt just awful once I got up.  Monday morning, however, I was fine, once again.  Monday I wanted to walk that same route to see if it was just too long of a walk, or if it was because of the fatigue that seems to hit on Sundays.  So Monday after work we walked the same route, this time it only took us forty minutes and we had no issues.  So that was it--Lesson #2--Sundays are my bad days.  For three weeks in a row now I have had bad Sundays.  Now we will at least be able to plan knowing what to expect on Sundays.

Monday night, I finally finished writing what seemed like a million thank you notes.  Please forgive me if I missed you.  There have been people who have brought gifts, brought meals, and helped in many ways that I may not have written down, so please accept this public thank you if I missed sending you a note.  I truly do appreciate all of the support I've received.

As I was writing Monday night, I reached up to rub my head and notice, for the first time, hair falling out.  I didn't know what to feel.  Was I glad because if I had shaved my hair and it never fell out, I would be totally discouraged?  Or was I sad because this was truly the reality of going bald?  I guess I felt a little of both.  I was relieved that yes, my hair was going to fall out, so shaving was a good thing.  I was scared because it was another sign of reality that I really do have cancer and crazy things are going on with my body.  But, in the big picture, it was just another point on the journey.  By Tuesday morning in the shower, it was definitely confirmed that my hair was falling out.  Now I just wondered how long it was going to take.  At this point, it's sort of like a cat shedding--it doesn't fall out unless you rub it or touch it.  All I know is I couldn't be happier that I shaved it short.  I can't imagine the heart-break I would be feeling right now if it were long strands of hair coming out every time I touched it or brushed it.

So that's the lastest.  I'm learning how to better manage chemo, I'm figuring out my wardrobe with coordinating caps and scarfs, and I'm trying to eat and exercise to stay as fit as possible to help me through this long journey.  Thank goodness recovery from the surgeries seems to be pretty much complete.  My six week checkup is next week, but I feel fully recovered from the hysterectomy.  My right hand fingers are still numb and I still have no feeling under my right arm, but that could take months to return to normal.  Even my scars are healing and starting to disappear.  Though they say each week the effects of the chemo may increase and right now I'm learning a lot, life still continues without focusing on cancer.

(Revised) Chemo #2 and Pretty In Pink Party Both HUGE Successes.........

2/11/13--Monday--Day 121--My Beauty Will Come From Inside Out.

Raw video footage is now uploaded at www.lindseyfamily.com/cancer  This includes Brooklyn's video, the blue mohawk video, the slide show of Susan Support Team photos and all three live streaming videos.  We will be working on creating the editied Pretty in Pink video for a little while.

Also, I totally forgot to blog about the balloon release on Sunday and it's a story that must be told.  If you've already read the blog, skip to the Sunday morning paragraph for the update.
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So much has happened since my last post--my second chemo, the Pretty in Pink party, my new bald appearance.  I'll start with chemo #2 from last Thursday.

We first went to the lab where they accessed my port and did the blood work.  While waiting for the lab results, we stopped in the Bouquet of Hope to look at scarfs.  I picked out a few head caps but still have a bunch to figure out about using a scarf.  The caps looked great with my hair but I wasn't too excited at the thought of them with no hair.  While in the shop, I ran into a woman who had lymphedema.  While I only saw her hand, wrist and part way up her forearm, I was completely shocked.  Her arm was so severely swollen it literally wrinkled over her hand at the wrist.  She was there looking for a compression sleeve to try to help.  She said she thought the lymphedema had become much worse from the airplane ride over.  It truly scared me and made me realize how quickly lymphedema could happen and how awful it could be.  She had never seen Leona, the lymphedema specialist, and didn't know anything about lymphatic massage so I suggested she look into making an appointment.  After that, now more than ever, I'm committed to following Leona's suggestions to helps me avoid lymphedema.

When we ventured up to the 3rd floor and went back to the chemo area, I was given to Cheryl, my nurse from last week.  She said she saw me on the schedule and requested me.  That made me feel good and was really nice because she was familiar with the bad reaction I had had last week and knew the plan we had set to slow things down.  We started with the Dexamethasone, the steroid to prevent reactions.  That is given in an IV drip for 15 minutes.  This time, instead of then shooting in the Benadryl and Pepcid all at once, we did another 15 minute IV drip with those two drugs.  That was immediately better.  No dizziness, minimal reaction, and no suddenly feeling drunk.  This was good.  After that finished, we only had to wait 15 minutes before starting the Taxol (chemo) because the 30 minute wait is between the Dexamethasone and the chemo.  The chemo I receive, Taxol, is supposed to take just about an hour to infuse.  Cheryl slowed it way down causing it to take about 2.5 hours.  But once again, it was great.  I had no sleepy reaction, no numbing, very little reaction at all.  In fact, Greg had planned to pick up our car that was getting some work done once I "conked out" and be back before I woke, but I never really even felt sleepy.  The only bad part of the whole experience is that the whole process from lab to finish now takes 5 hours instead of 3, but it was so worth it.  So that was it.  We started at 10:30 AM and were leaving by 3:30 PM heading home with me relaxed, but not knocked out or hallucinating.

Thursday night our friends Mike and Suzie from Albuquerque came and Friday morning my dad, Preston and Yuri came to help us prepare for the Pretty in Pink party Saturday.  I relaxed most of the day Friday in between doing small tasks trying to make sure I was well rested for the busy Saturday.  With everyone's help, the house was cleaned, some additional food was prepared, beds were made for some of our out-of-town company coming, and we even make 50 plus Kisses of Hope goodie bags to give out to those who came to the party.

The real fun started Saturday as the house filled with people who had worked hard to make this Pretty in Pink Party perfect.  Greg was amazing directing our family and friends in all of the necessary tasks to get things ready for a houseful of people.  Carol Elders and Stephanie Saldana came at 9 AM with all the wonderful decorations and goodies.  They had worked hard planning everything.  With the help of Yuri, they transformed the house into a pink palace of inspiration and support.  Our friends Paul and Diane came from Phoenix and immediately jumped in helping with food and setup.  Friends from Tucson, John, Jennifer, Michelle and her kiddos came bringing a huge tub of Egees!  Suzie, my Albuquerque friend and personal hair dresser, trained and prepared the Pink Out crew--Mike painted pink ribbon glitter tattoos, Rebecca Richins, Cheyanne Allred and Yuri learned to tie pink bling in hair and chalk hair, and helped with decorating nails.

Many who couldn't make it that afternoon for the party came earlier in the day to show support.  Natalie Reynolds from the middle school came and gave me an amazing poster the middle school had printed of the wonderful support photos from the school's Pink Out day.  She also presented me with a beautiful quilt made by Denise Crocket.  What an amazing gift.  A knock on the door brought bags and bags of balloons sent from Sandra Griffith Carpenter, one of my former newspaper editors, along with a note that brought me to tears.  My dad brought me a bouquet of pink carnations, my mom's favorite flowers, and Randall, my father-in-law, brought beautiful pink roses.  One of the most special gifts of the day was having Vikki "Mouse" (Vikki Colvin McIntyre) come from Tempe to photograph the special event.  Vikki has been a part of our lives for more than 20 years since she was in high school and was one of my newspaper editors.  She is an amazing photographer now and to have her photograph this moment in my journey was heart-touching.  The scene was truly set for an amazing evening.

By afternoon the house started to swarm with people as 4 PM came and went.  Even a friend from high school, Les Duncan, came from Phoenix to surprise me.  Wonderful friends continued to flow in, some whom I haven't seen in years.  Though I tried to stay seated as much as possible, every few moments brought new waves of more wonderful friends who came to stand by my side and support me.

Just before the party started, Greg set up a live streaming video feed which we advertised on our Facebook pages.  Suddenly, people from everywhere could join the party live.  Thanks to our iPad holders, Carol, Duane Richins, and Lily, our friends from across the nation joined the party live.  Our star videographer for the streaming video feed became Nicole Lunt.  She is Wanda Evan's daughter who came to support me since her mother couldn't be there.  Nicole had been key in getting a lot of the Susan Support Team photos from around town, and, like her mother does, she immediately stepped in and made a huge difference in this event.  She made the video stream great for the viewers, and we really appreciated her jumping in at the last minute.

By 5, most everyone had been "Pinked Out" with bling or tattoos or hair color or nails or all of the above, so we went out back on the hill to take a group photo.  That's when I realized there were more than 50 people there!  It was an amazing feeling of love and support.  From there, Greg ushered everyone to the back playroom to make an announcement.  He and Preston had been working on a surprise most of the day, in between doing everything else.  He started by announcing what I call the Blue Mohawk video that had originally inspired me to make a video.  A sister in cancer, Tina Richards from Boise, had made a video of when she shaved her head.  My neighbor, Gayrene Claridge, had originally shared the video with me. Greg introduced Tina's video and showed it explaining we wanted to make shaving my head inspirational for others as well.  Then, he made us all cry.  He announced that Brooklyn, my daughter who is in college in Boise, had made a video for me, and with the help of Preston editing it together, he wanted to show it since she couldn't be there in person.  Brooklyn was following the live stream and watched as we all broke into tears.  Her video started with a short introduction with her in her pink wig.  Just hearing her cute, sweet voice and personality lit up the room while bringing tears to many of us.  Then, it went to pictures.  The first picture was of her and said, "Not just me....". The second was of her and Trina, my best friend in Idaho with whom Brooklyn is living, and said, "Not just us......". And the third picture was of three hands all clasped together with three breast cancer support bracelets and said, "but the three of us, can you guess who...." and then, there she was.  The fourth picture was of Brooklyn and Trina with Tina Richards from the Blue Mohawk video.  Brooklyn had found the lady who made this video and met with her to do a photo shoot to be part of Brooklyn's video.  There she was with what you might call a surrogate for what I am facing.  It was a real connection for Brooklyn and I both.  She suddenly had a person to give her hugs to and seeing that made me actually feel them, knowing they were for me.  It was amazing and silly and crazy just in the way only Brooklyn can do.  And mostly, it made her be right there, right with us, right in the room. (Brooklyn's video, the Blue Mohawk video, the support picture video that we showed throughout the party on the TV's, and the live streaming videos can all be seen at www.lindseyfamily.com/cancer  When the Pretty in Pink video of the party is ready, I'll post it in the blog but it will be a week or so out still).  I can't thank Tina enough.  Brooklyn loved meeting her and I feel like I know her already.

So after the videos and a short break to dry tears, we were ready.  It was time to cut my hair.  As Suzie was getting ready, Greg re-entered the room as only Greg can.  He wore a long pink wig, pink star Elton-John-like sunglasses, and of course, his pink speedo.  It all matched his pink toenails and fingernails.   It was the perfect tension-breaker.  Suzie pulled out a beautiful new pink cape, pink spray bottle and pink comb while I announced our intention to do the cutting in three stages.  I was determined not to cry and felt strong as long as I didn't think about what we were actually about to do.

Through the first cut, which took my hair from about four inches below my shoulders to about ear level, I never looked at the ground.  I knew if I did, I couldn't stay strong.  There were fifty people in the room watching, and I knew they would take their cues from me and my reactions.  Greg and others kept me laughing and when the first style was finished, everyone applauded and said they LOVED my hair short.  My hair hasn't been that short since eighth grade when my sister Sharon was in beauty school and I was her practice dummy, but it actually didn't look as bad as I thought.

We immediately moved to the next cut, which was just going to be a few inches long.  Between Greg, and Preston, and my friends Diane, Mike and Michelle, someone continually held my hand, which helped a ton.  Once again, that style pleased the crowd as everyone commented on how my eyes and check bones suddenly popped out.  Now they were taking bets that I would never go back to long hair again after this.  I still had not looked at the floor, but when I looked in the mirror, I was relieved to see my head was not quite as big as I had imagined and my face did not look super fat like I had feared.

Now was the final step--shaving it almost completely off.  We were told to leave about 1/4 of an inch to keep it from itching and getting infected.  There were no more scissors--only clippers now as Suzie "buzzed" me into the last and final stage.  She completed the back before ending with the front and that was it.  It was all gone.  I still had not looked at the ground and didn't intend to.  As they quickly cleaned up the floor, I kept my big smile and happy attitude as I took my first pictures with family and friends and little or no hair.  When I looked in the mirror, I was surprised by how much darker my hair was than I had been wearing it.  I have been coloring my hair for almost a decade to escape the gray that continued to creep in.  My brown color was a contrast to the darker brownish black that lay against my scalp now.  It didn't matter.  It was done.  And everyone was super supportive and encouraging telling me I was beautiful and that my eyes were even more amazing now.  Whether it was the truth or a lie, it was definitely what I needed to hear so I was glad.  After more pictures, everyone wanted to see the caps I had bought and my wig so I tried those on.  Then I spent the rest of the evening just in my bare head.  That was the best thing ever.  Spending the evening in front of more than fifty people with my "bald" head immediately got me passed the fear of facing people and the public bald.  It did exactly what I needed it to.

As the evening came to a close, thank goodness for Susie Case, Carole Brady, and the friends staying the night.  They did an amazing job cleaning up and un-decorating.  I don't know what I would have done without them as I was physically reaching my limits.  It had been an incredibly busy three days.  I was still on an emotional high as midnight approached.  We had a poker game going and a couple of tables of Wahoo while I most sat in the recliner watching.  I didn't want to go to bed.  I knew once I let myself come down from the high, reality of what we had done would set in.  But by 1:45 AM, it could no longer be avoided.  We headed upstairs to bed and just as I feared, it all hit me.  As I started to brush my teeth, I broke down in tears.  I couldn't even look at myself in the mirror.  I cried and turned off the light so I didn't have to see myself.  I was a wreck.  As we started the evening, I was a normal-looking person who happened to have cancer.  Now, as I ended the day, I suddenly looked like a sick person.  Before I had cancer, but I looked normal.  Now, I look like I have cancer.  Greg, Mike and Suzie tried their best to comfort me, but it was hard.  I climbed into bed and laid my shaved head on my pillow for the first time.  It was pokey and cold and just felt completely wrong so I cried some more.  Greg held me and tried to reassure me.  It was just hard.

I woke up throughout the night as my head was really, really cold.  That would be one thing we would have to change--I obviously needed a stocking cap in which to sleep.  The next morning I woke feeling more sick than I've ever felt so far.  My body was exhausted, I was trembling and I was limp.  Suddenly I didn't care how my hair looked anymore.  I staggered into the shower hoping it would make me feel better.  Wow, do I shampoo my head?  Do I condition it?  It was strange.  I almost beat Greg out of the shower.  I got dressed and tried on several of the caps I had purchased.  All seemed to instantly give me a headache except for one--a beautiful pink hand-woven cap given to me by Irene at the party.  Her friend had made it and it was my new very best friend.  I didn't need the cap for looks, though it was exquisit, but I needed it to keep me warm.  I headed downstairs and my energy was gone.  I collapsed in the recliner trying to visit with all of the company as Mike, Preston, and Yuri cooked breakfast for everyone.  The thought of food was nauseating though I finally managed to get down some eggs.

After breakfast, and before everyone left, we decided to do a balloon release.  The note that came with the balloons Sandra sent the previous day talked about protecting someone by imagining them wrapped in a pink bubble safe away from harm.  So we all proceeded outside to let the balloons go free as we lifted up our individual thoughts and prayers for my recovery.  We had a huge bouquet of balloons for me to release and everyone else had several to release as well.  From the back yard, up they went--all but mine that is!  Like everything else with this stupid cancer, it had to be difficult--funny, but difficult.  Sure enough, the huge bundle I released went straight up and caught on the electrical lines that run behind our house.  Of course!  The wind was swirling just enough to quickly wrap several of the balloons tightly around the lines.  Great.  Now what.  Have no fear, Greg my hero is here!  Out he came with a huge PVC pipe and over the fence he went and up onto the neighbor's storage shed with is large pipe in hand.  He worked trying to convince the balloons to release, but with no success.  Plan B included my large serrated bread knife taped to the end.  Once again he began prodding the balloon bundle to leave.  As the knife finally cut through the strings, the bundle released and quickly rose into the sky.  By then the other balloons were barely visible as they had circled back around in the high altitude.  Who else could have pulled that off?  The only thing that would have made it perfect is if Greg had been in his pink speedo outfit from the previous day.  We stood and watched the bundle until it was out of site and all laughed and my ingenious husband.  The symbolism of how crazy and mixed up this cancer diagnosis has been from the very beginning was perfect.

After returning inside, I felt myself getting much worse.  It was either a reaction from the chemo or exhaustion from the days before or a mixture of both.  The expected chemo diarrea had started again leaving me feeling even more empty and by the time the last group left, I could barely crawl up the stairs and into bed.  I slept five hours non-stop, got up to eat a bite and went back to bed for another eight hours.  I had no idea what Monday would bring, but I knew the weekend couldn't have been better, even though I was sick on Sunday.

Monday morning I woke much more refreshed and actually fine with how my head looked.  Getting ready to go to work I found dressing to be the new challenge.  I have never had to worry about how the neckline of my clothes looked because the collar and neck have always been hidden by my hair.  Each outfit I tried on looked odd to me because of the neckline.  Four outfits later, I finally settled on one that looked "normal".  Maybe I'll invest in some neck scarfs until I can get used to this neckline and collar stuff.

As for my head, I put a lot of thought into how I was going to go to work the first day after my party.  Should I wear my wig?  Should I wear a cap or a scarf?  After worrying and wondering for days and day, the party made it clear to me.  By being in front of so many people already, I didn't have any hesitation about being seen in public or by people with my "bald" head.  I knew I was going to spend my first day at work as I was--bald.  I wore my pink cap to keep my head warm as I went to the office, but once inside, I pulled it off and spent most of the day as I was.

Was that the right choice?  If I wasn't going to wear my wig, why did I buy it?  Here is what I decided.  I want to be comfortable on a daily basis.  I don't want to be ashamed.  I don't want to feel like I have to hide.  I have cancer--it's no secret.  Just as I've said from the beginning, I don't want there to be any awkwardness about it.  It is what it is.  So in the workplace and on a daily basis, I will probably be bare-headed or with a cap or scarf.  If there is a more formal event or I go somewhere where people don't already know I have cancer, I may wear my wig, we'll have to see.  I know five weeks ago, those were not my feelings at all and picking a wig under which I could hide was the most important thing.  I was going to wear my wig and pretend everything was normal.  But interestingly now, my life is not normal.  It is completely changed and I am completely changed.  I may no longer be pretty with long hair to compliment my outside appearance but a wig isn't really going to change that.  Instead, what I know is my beauty will come from the inside out.  Those who know me will continue to see the beauty I hold within me as it lights up my eyes, my face and my spirit and that really has very little to do with what's on top of my head.

Focusing on the Right Perspective............

2/6/13--Wednesday--Day 116--It's Not What You Have to Go Through, But How You Look at It

As of today, I'm down to about two days of having my hair.  Interestingly, since planning the Pretty in Pink party, I haven't cried at all about losing my hair.  Talk about the perfect diversion.  That is good because I cried for about a week during December every morning when I would sit and curl my hair. It's been easier since using my hair loss as an inspiration for others facing this same thing.  Making the Pretty in Pink video, with the help of my family and friends and many supporters has been the perfect distraction.

On Friday, I found out the entire middle school and all three of our elementary schools, Dorothy Stinson, Lafe Nelson, and Ruth Powell had a Pink Out day in my name.  They took wonderful pictures decked out in pink holding Susan's Support Team signs.  When I first heard, it brought me to tears.  How wonderful to have people rally around me in support of fighting breast cancer.  It makes losing my hair so small in comparison to the awesomeness of such amazing support.  I am so grateful for the teachers and administrators who organized this and helped students relate to me as the "lady responsible for the computers."

The Pretty in Pink pictures have continued to come in.  I am amazed at how many of my former students have followed my blog and stayed super supportive through this.  Some of my former yearbook editors and staff members, newspaper editors and staff members, even some of my former English students have all sent pictures.  I am humbled at the thought that I made such a difference in their lives that they care about what I'm facing more than a decade later.  Even Preston's Devil Dancesport group all dressed in pink and took a support picture.  Luckily it was planned for tonight and I was able to stop by since we came to Mesa a day early.  I stood in front of those young adults and told my story of wanting to inspire others as they faced hair loss and thanked them for helping me create this video.

My neighbors, Gayrene Claridge and her daughter Kristi Fertig (one of my former newspaper editors), painted a tree trunk in my honor.  It is completely pink with a pink ribbon painted on it.  As people come to the party and pass the tree, they will have the opportunity to stop and sign it.  That was really cool and I was so impressed they took the time and effort to do that to show their support!

I hate the thought of Saturday coming and losing my hair, but I am excited for everyone to come and be a part of the support system.  I told someone losing my hair may seem insignificant in the bigger picture of things, but it would be like if you had to go to work with your belly fat showing.  We all "hide" our imperfections like belly fat, so think for a minute what it would be like to know, starting Saturday, you had to go everywhere, work, the store, out to eat, with your belly fully exposed.  That's the best comparison I can make as to how I'm feeling about going out bald.  Yes, I have an awesome wig, but I've heard from so many people that it just isn't comfortable and you end up not wearing it.  We are going to the Boutique of Hope at the Cancer Center tomorrow after labs and before chemo to learn how to wrap a scarf and maybe purchase a couple.  My friend Wanda Evans gave me some, but I haven't had the nerve to look at them yet.  Guess I'll work with those some on Friday.

I've been a bit frustrated with the fatigue I'm experiencing.  This afternoon, for example, we planned to stop at a few stores on our way in to town.  I made it through one store for about thirty minutes and then my body became possessed.  I grew flush, which Greg immediately noticed.  I started sweating.  The whole store was spinning.  I finally had to go to the car while Greg checked out.  It makes me so angry.  I should be able to take a few breaths and get through it, but it just takes over my body completely.  I so want to have mind over matter, but no matter how much I want that, my head becomes totally foggy and I get dizzy and I'm just done.  I can't figure out if it is still from the surgery three weeks ago or from the chemo last week or both.  Needless to say, we didn't make any more stops.  Greg started driving and I fell asleep instantly.

In spite of the physical and mental challenges, I was still able to work two full days and one half day this week, so that is good.  Thank goodness the dizziness is not an issue at work because my job is sitting at a desk so when the dizzy spells happen, I just put my head back and continue to work.

Last night I did decide coming over to Mesa the night before chemo is probably not such a good idea.  I grew anxious and realized it lengthens the "chemo experience" to a two day event instead of one.  I told Greg through, a couple of tears, I didn't want to do chemo again.  I've done it once and I know what it is now and I'm done.  I was really dreading it when all of a sudden, he put it into better perspective.  "You only have 15 more left," he said.  What?  How did he figure that?  I have six months of this.  But when he stopped and explained, 12 once a week treatments (11 left) and 4 once every three week treatments, it helped--A LOT.  Fifteen.....I can do fifteen.  It won't be fun, but it's doable.  Just like how the Pretty in Pink party has changed my perspective on losing my hair, I was grateful for Greg's perspective and realized it's not always about what you have to go through, but how you look at it.

Life with Chemo--Returning to Work...........

2/4/13--Monday--Day 114--Working Today Was Really Good For Me

Well, I made it through the weekend after chemo!  We had been told the day after chemo (Friday), people do well, but the second day (Saturday) and third day (Sunday), some people experience side effects so I was super curious what the weekend would bring.  On Friday, I slept in and rested in bed until later in the morning.  When I got up, it was the second day in a row that I didn't really "feel" my surgery.  My stomach and incisions weren't consciously hurting and it was nice to feel semi-normal again.

We decided to venture out for lunch for the first time since being home.  I still don't really have much of an apetite, but it was nice to get out.  After eating, on the way home, we made a quick stop and while Greg ran inside a store, I saw some friends and got out of the car to give hugs and catch up.  We stood talking to them for about 45 minutes, and besides being cold in the shade, I did really well.  My confidence was increasing and for the first time I was feeling good.  From there we headed home to meet Jan who had Carson and Kelli in town for the week.  It was nice to finally meet and talk to Kelli.  She had been at the hospital when I was completely out of it, so I remembered her face, but that was it.  I was able to relax in the recliner while we visited which rejuvenated me some.

After they left, we headed back out, this time to my office.  I wanted to meet with Dr. T. and discuss going back to work for a few hours starting on Monday.  And even though it would be just three weeks since my surgery, I had a note from the doctor that I could return to work "self regulated" when I felt comfortable.  Greg went with me because my head is still spinning enough for me not to feel safe driving just yet.  Also, when I hit that wall of exhaustion, there really hasn't been much warning.  I just suddenly feel like a balloon that has lost its air, and I sort of become a limp puppet.  When we first arrived, we stood by my office door and visited with my team for about 30 minutes.  After that, we met with Dr. T for about an hour.  By the time we were finished, my head was spinning and I was done.  I had done a lot throughout the day but I was glad Greg was with me to take me home.  So other than some fatigue, I felt really pretty good Friday.  I hadn't been walking since the previous Saturday because it had been brutally cold and windy the first part of the week, but we did manage to get in a mile walk before Friday was over.

Early Saturday morning, I did begin having diarrhea, a known and somewhat expected side effect from the chemo, but it was definitely bearable.  Saturday I found myself much more fatigued.  After eating breakfast, we went for a walk, this time 1.5 miles.  I had to hang on to Greg the last half mile as I was so light headed. That has been the frustrating part of this recovery.  I don't know if it is from the anesthesia still working its way out of my body or what, but I constantly feel like I'm in the clouds.  It's like what you feel when you take a decongestant and you just feel fuzzy.  I was feeling it before the chemo, but Saturday it seemed to be even worse.  I went with Greg and sat in the car as he changed the oil in the Prius, then I came home and stayed in the recliner most of the afternoon.  I just didn't have the strength to even really lift my head.  By evening, I felt a little better but I knew that was the fatigue they had talked about as a result of chemo.

Sunday morning I felt better.  After eating we went to the grocery store, picked up some chicken for lunch and then walked 1.75 miles.  I was able to help put away groceries, which was nice but after that, it was another afternoon of being in the recliner.  We watched the Super Bowel game and I did a few loads of laundry, but that was the extent of my energy.

I went to bed early Sunday night wanting to get up early Monday morning and start adjusting back to a work schedule.  As I was getting ready for work Monday, I felt scared.  I had been out for three weeks and going back to work just felt a little intimidating.  My team had been doing fine without me.  Was I going to now slow everything down?  I know that sounds odd, but I have never let my co-workers see me when I am weak or not on my top game until now.  I'm the boss, and I've always been "together".  Now everyone knew I was sick with cancer, which in my mind made me weak.  And maybe that wasn't it, but for whatever reason, I was feeling very intimidated about returning to work.  Interestingly, when I went to get dressed, I decided to try on my dress pants, never expecting them to fit due to the swelling from surgery.  What a surprise to find not only did they fit, but I had extra room in them!  I was super excited!  I wasn't going to have to go to work in my sweats and in the weirdest way, I gained some confidence back.

I spent the first two hours working from home making sure I felt like going into the office.  About 9:30 Greg dropped me off.  My morning was filled with projects that had been waiting for my return.  Greg picked me up for lunch and after eating, dropped me back off.  Within an hour after lunch, things became more challenging.  I worked an hour longer than I should have before calling Greg, but at the end of the day, I pretty much put in a full day and felt good about myself, even though I was exhausted.  As soon as I got home, I fell fast asleep in the recliner for more than an hour.  I'm not sure I will be able to work full days every day, especially toward the end of the week, but for now, working today was really good for me.

First Day of Chemotherapy--The Dreaded 3rd Floor.............

1/31/13--Thursday--Day 110--Focusing on Chemo as the Path to the Cure Makes this Very Doable!

We thought we'd come to Mesa yesterday, but once I went to have my nails done, my energy was gone and I didn't feel like making the trip.  It seems my endurance still maxes out at about an hour and a half no matter what I'm doing. So this morning we left by 6 AM for our first day of chemo.

We started at Preston's signing some paperwork for him to move into a little larger apartment.  His current apartment is just over 400 sq ft and I can't tell you the number of times we've all stayed with him along with Mike and Suzie and even Brooklyn. We would fill the place with air mattresses and he never complained. The new place will be twice the size with a den where we'll put an extra bed so that in itselfe will help a ton and I won't feel so bad imposing.

After the paperwork, we arrived at the MD Anderson Cancer Center at 10 AM as scheduled. First I reported to the lab center.  A young lady named Jesse took me back to do my labs and once she learned it was my first time getting my port accessed, she was careful to explain every step. We had been told to place a glob of the prescription lidocaine cream on the port area an hour before coming. She said it was really good we did that as she removed the band aide and started poking around the area with her fingers feeling for the bumps that mark the corners of the port.  The Bard Power Port is a triangle shape device about the size of a bottle cap and the diameter of a quarter.   The top looks like a mini trampoline with a membrane of some kind stretched over it.  It is a self-sealing silicon septum so after a special needle accesses it, it reseals itself.  Under the septum (trampoline) is a small basin.  On the top of the port, each corner has bumps called Palpation Points on the rim of the port so the person accessing it can absolutely feel all edges of the port and determine the positioning.  The port is surgically inserted under my skin by my left clavicle bone with nothing sticking out of the skin.  The trampoline-like membrane is attached to a sealed basin which has a long catheter running out of it and is inserted into one of my large central veins that goes to my heart.  This way medications or fluids can be delivered directly to my blood stream, and blood samples can be taken from my blood stream with no need to have repeated sticks in my wrist and veins.

Jesse spent time pushing on the port making sure she had a good handle on the positioning of it.  Then she brought out the supplies, which included a mask for her and I to wear because this was a sterile procedure.  She started by cleaning the skin with Chloraprep which was this cool sponge on a wand she punctured that contained antiseptic which fed into the attached sponge.  It was like one of those dish soap scrubbers that has soap in the handle that comes out the sponge once you start rubbing the dishes.  She then put on a special solution around the area so the tape would come off easily later.  She sprayed a freeze antiseptic spray on the area right on top of the port for 10 seconds which also helped numb the area.  Then she inserted the PowerLoc needle or what she called a Huber needle, which is basically a the special curved needle that won't hurt the port.  I didn't even feel a pinch when the needle when in.  "That doesn't feel right," she said and quickly made an adjustment saying "there we go."  This made me realize experience is needed to access the port.  She confirmed it takes doing it a hundred times or so to really get a good feel when it's right. I was glad to have someone who could recognized that.  She tested it by making sure it could pull blood then rinsed it with some saline.

She told me my orders were for a CBC which was a Complete Blood Count screening and a Hepatic Function Pannel for the Liver.  The blood count was mainly so they could watch my red blood cells, my white blood cells and my platelets.  The liver screen is to make sure my liver isn't being hurt throughout the treatment.  Once she pulled the tubes of blood out of the port, she flushed the port with two vials of saline and did what they call a Heparin lock on the port, which basically means they fill the port with Heparin to keep it from clotting. She finished by covering the whole area with clear cellophane band aide called Tegaderm which sealed around the edges and made a sterile pocket type environment so just the tubing came out.

From there we headed to the second floor.  Last week the clinic had given me a large section to read on chemotherapy so Michelle, Dr. C's assistant, wanted to meet with us to answer questions we had after reading the material.  Of course, I had a ton.  She carefully listened and answered each one.  I started with Greg's big questions, "Am I for sure going to lose my hair?  Some of the literature said thinning?" I knew the answer to that, but we were both hoping it had changed.  It hadn't.  She confirmed my hair would for sure fall out.  We went through a serious of about 10 more questions and Michelle was able to carefully explain them all but one.  "What stage am I?"  Because staging depended on the last pathology report as well as the first, we had never been clearly told.  We think Dr. Matt might have said Stage 3A, but we weren't positive.  And it's not that it matters so much, I just really wanted to know.  Michelle said she would research that and get back to us for sure.

Even though it was getting close to time to make the dreaded rise to the 3rd floor, I wanted pictures with everyone before I lost my hair.  They were all so accommodating.  As they came in, I told them about my Pretty in Pink party and they were all so excited.  We got a picture with Michelle and Lisa, assistance and nurse to Dr. C.  They tracked down Dr. Byrum and Melissa, so I got a picture with them.  Even Dr. C stopped in and took a picture.  And we got pictures with Adrianna, my nurse navigator, and the two sweetest nurses there, Tia and Betsy.  I was so happy and that meant the world to me.  The only one we missed was Dr. Matt because he was in surgery so we'll have to find a way to photoshop him in.

That was it.  There was no more avoiding.  It was noon so we were already technically late to infusion, but they take you when you get there.  We walked down the long 2nd floor hallway past all the empty chairs to the elevator.  I didn't want to push that button.  From the beginning I said I would never need to go to the 3rd floor, but here I was.  I stood in the elevator for a few seconds staring at the button.  Greg thought he pushed it but it never lite up so we found ourselves down on floor one--the perfect chance to escape, but I didn't, of course.  Instead, I reached over and pressed it--floor 3--then held my breathe as we ascended to the top floor.  The elevator doors opened and I sighed a breath of relief.  It looked just like the second floor but different colors.  I don't know what I was expecting.  There was the same long waiting area looking out over the long windows in the courtyard that was now under construction for their five story tower expansion.  There were what seemed like hundreds of chairs filled with very few people.  I went to the checkin desk just like I did on floor two.  A nice lady named Donna greeted me. "I'm a newbie," I admitted.  "This is my first time to the third floor."  I told her my story of my first day there with Dale the volunteer and how I didn't even know what "the infusion floor" meant.  She laughed.  She said they were all nice up there and I would be taken good care of.  Instead of labels, she put a hospital armband on me explaining they want to make absolute sure they are administering the correct drugs to the correct person.  I asked her if they had water back there as I was quickly reaching my limit of being active.  She said yes they had water and juice and would even serve me lunch.  Wow, you can't beat that!  

We sat down in two of those empty chairs waiting to be called back, which didn't take long.  The aid escorted us back to the center area of the building where, on the second floor the exam rooms are located.  On floor three, it's a large open area all the way to the windows on the other side of the building, but it is divided by low cubicles.  It was really nice.  There were private rooms with beds on the wall against the waiting area if you didn't feel good and wanted to lay down to receive your treatment.  Then the rest of the area was filled with cubicles each with a comfortable looking recliner and a chair.  A nurse sat at the end between the two cubicles so it looked like a 2:1 ratio of care.  They lead me to the best seat in the house--by the window overlooking the parking lot--and said there was no guarantee I could get this seat every time, then laughed.  Unfortunately Greg's seat wasn't near as comfortable as mine.  Cheryl was my nurse and I explained this was my first time, so she said she would explain every step and she did.  She was great.

It is up to the nurse to read the lab work and do the calculations for the chemo that is ordered.  They calculate your weight, height and body mass along with your lab results to determine how much of the doctor-ordered medicines you will receive.  After they do the calculation, a second nurse does it as well to check accuracy.  Then they order the medicine from the pharmacist who also looks over the calculations.  First there are three pre medications.  Dexamethasone is an anti-inflammatory and immunosuppressant steroid that helps prevent reactions.  In addition, I would receive Benadryl to help prevent reactions and finally Pepcid to help with stomach irritation.  They infuse all of those in within 15 minutes.  Benadryl usually knocks me out when I take it at home, which is why I rarely take it.  This was even more potent.  It didn't take long before the room started spinning and I became "drunk" as though I had had one too many margarita's.  I was trying to stay focused because the building Chaplin had come by.  He recognized me and while he wasn't the hospital Chaplin we had talked to in the hospital, he had come to see me when I was less conscious.  I enjoyed talking to him and especially praying with him, but I was glad when he left so I could tell the nurse of my crazy head.  When I did, she said I should not be feeling that way.  She went to check with someone and returned saying it was probably because we put the Benadryl in too quickly but it would be okay.  There is a 30 minute wait before they start the chemo drug, Taxol.  During this time Cheryl carefully explained the known side effects and when I should call the clinic.  Again, she did a great job.

Finally it was time.  The pharmacist brought out the Taxol and we were started.  I was so glad because I could barely stay awake by then.  It was supposed to take an hour from here.  They brought me a warm blanket and I was out.  My spinning head forced me to slept.  I didn't sleep too long though as I woke up when my left hand felt tingly and funny.  It was tingly and numb in my ring and pinky fingers a down my hand and wrist.  When I asked the nurse about it, she stopped the infusion immediately.  She explained that was a reaction and called Dr. C.  By the time Dr. C called her back, the tingling had gotten better.  She started the infusion on half the speed this time.  When I tolerated that for a bit, she increased it back to full speed.  Almost immediately my feet and legs went numb.  Following Dr. C's orders, she reduced it back to half speed and gave me some Ativan--great, another sleepy drug.  The tingling mostly went away.  She explained that my infusions will probably have to take longer because of my reactions.  Instead of planning 2.5 hours, we should plan 3.5 to 4 hours.

When we were finally finished, she removed the tape and needle accessing my port after doing the same flush routine they did downstairs at the lab.  When I stood up, I was very wobbly so she and Greg both insisted on a wheelchair to take me downstairs.  I hated that.  But that was it.  We were in the car and on the way home.  I crashed immediately having to forgo my visit with my grandma and Aunt Mary, though I vaguely remember telling Greg to take me there and him saying okay knowing I was just talking.  In Globe I got a small snack and milkshake and though I slept more on the way to Safford, by the time we arrived home at night, my head had cleared up.

So that's it--the story of my first day of chemotherapy.  It was a great learning experience and as I repeat it every week, I'm sure the details will become not only more familiar, but more clear.  As always, I had lots of support from text messages and FB posts, which helped keep my anxiety down for the day.  But honestly, I wasn't really worried.  How can you be worried when you know this is finally the first step in reaching the cure.  I focused on that all day.  I realize chemotherapy is a mountain in itself, but it is a path I have to climb to reach the cure, so focusing on chemotherapy as the path to the cure makes this very doable.