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.