Wednesday, November 9, 2011

Health Matters

I decided to write about my recent experience with chemotherapy treatment for two reasons. One, so I would remember this adventure in my life and two, for those that may be curious. Deciding to undergo treatment quietly was a decision my husband and I made due to the nature of the chemotherapy. Immunosuppressive chemotherapy attacks one's immune system, effectively destroying it and leaving a person much more susceptible to infection: people (friends/visitors) would be one of my biggest threats. The mental and physical stress of the hospital stay and the looming side effects of the chemo were another reason to keep my admission quiet. In retrospect, not telling everyone about my hospital stay was the smartest thing we did. There were days I felt so awful, the thought of having to communicate with anything more than my pillow was beyond my mental and physical capacity.


This temporary lifestyle change is one to which we are trying to adjust. Visitors to my home must be vetted and invited and trips to town are well planned to avoid crowds. My diet is a neutropenic one - no fresh vegetables or fruits. (Hate that!) Cleaning duties are limited to whatever doesn't stir up dust and I'll not be raking leaves this fall. (Love that!)


My chemotherapy treatment is two-staged. The first stage was completed in the hospital with an IV form of chemo (ATG, or Atgam as the nurses referred to it) and the second stage is to be completed at home with a pill form of chemo (cyclosporine). Five days of 12 hour sessions with Atgam (and all the crazy reactions to the drug that would occur) made it necessary to be admitted to the hospital for the first stage. The second stage, so far, is going well. Some days are good where I feel normal and other days my insides tremble, my body sweats, my lips and mouth vibrate, and long naps cannot be avoided. In other words, I shouldn't be operating any heavy machinery or signing any contracts.


But what's all this chemo curing? I explain below. And forgive the hap-hazard method I use to tell the story. The hospital stay was a roller-coaster of a ride so it seems fitting that my story has a few curves and jerks in it.


DIAGNOSIS AND TREATMENT: "Smoldering" Aplastic Anemia & Immunosuppressive Chemotherapy
In June of 2011 I began seeing a new oncologist to try to get a handle on my worsening blood disorder. For the past twenty years, I've had different oncologists monitor my blood disorder but had never actually diagnosed or any treatment administered. My platelet levels were low and getting lower as the years went by. ‘Thrombocytopenia’ was the generic word to describe my poor health but in and of itself does not describe a disease. After running several tests and undergoing a traumatic one and half (I’ll explain later) bone marrow biopsies, my newest oncologist decided I had LGL Leukemia and scheduled me to have a port inserted near my heart to receive a series of intense chemotherapies. Thankfully the Lord intervened by using my friends and family to suggest I get a second opinion.


I made a call to the University of Tennessee Cancer Institute in Memphis and explained that I needed a second opinion and quick. They gave me an appointment for the very next day to see Dr. Furhan Yunus. (In researching this doctor, I discovered he is rated in the top 1% of oncologists by the US News & World Report health care poll in the United States.) Not only did I get an immediate appointment, I got an appointment with one of the best oncologists in the nation.


My appointment with Dr. Yunus was very informative. Dr. Yunus, in reviewing my medical history, told me point blank that I did not need to start chemotherapy for several reasons. First, there is a specific test used to determine if I have LGL. That test was never run by the doctor who diagnosed me so there was no ‘proof’ that I even had LGL. Second, I was too young to undergo such intense chemotherapy for a disease I may or may not have. Third, should I undergo chemotherapy for a disease I did not have, my chances for a successful bone marrow transplant (the positive CURE for bone marrow failure) would have been ruined. Needless to say, I canceled the appointment to have the port inserted and did not go back to that first doctor. Dr. Yunus then assured me that we had time to find out what was really wrong with me and that he would not rush to treat me. For that, I was very thankful.


Dr. Yunus and his fellow, Dr. Snider, told me they would present my case to their Heme board – a group of 5 oncologists and pathologists who would review my bone marrow slides and determine what my next steps should be. Their findings came back that they did not believe I had LGL and Dr. Yunus suggested I get a third opinion. He told me of a center in Tampa, FL that specialized in blood disorders such as mine and that I should go see them.


On October 5th, I flew to Moffitt Cancer Center in Tampa, FL. A more impressive and pleasant experience with a doctor’s facility I have never had. Dr. Chervenick and Dr. Kuball were the two doctors I visited with and they told me they would also present my case to their Heme board of 15 doctors and would run the LGL test too. I returned home after my visit and a week later Dr. Kuball called me with results. Their board came back with a diagnosis of a ‘smoldering’ aplastic anemia and a negative on the LGL leukemia test.


(I was so thankful for this third opinion and highly irritated at the doctor who had the nerve to diagnose and suggest treatment for a disease they never tested for. Believe me; I could go on a tirade in that regard. I’ll refrain.)


Moffitt’s suggested treatment was a round of Atgam and cyclosporine chemotherapy; the go-to treatment for aplastic anemia. Both mild chemotherapy drugs, they are used to suppress a person’s immune system in hopes that the bone marrow (the factory for creating blood) will function properly without being attacked by one’s own immune system. The side effect I most dreaded was the thought of losing my hair. Thankfully, neither drug would cause hair loss.


My next appointment with Dr. Yunus was on Thursday, October 20th and he agreed with Moffitt’s findings and their suggested treatment. He scheduled me for admission to the hospital on the upcoming Monday, October 24th.


There seemed so much to do in such a little time. I quick trip to Oklahoma to take my puppies to my parents had to be made. Their contact with the outdoor and it's many spores and germs would create a risk to my health. They had to be removed from my home until my health stabilized after the treatment. The Sunday before my admission to the hospital, I was able to attend my home church in Broken Arrow, OK where my brother pastors. All the worry melted away as the saints of the church prayed for me and I felt a great sense of peace that everything was going to be okay.


THE HOSPITAL VISIT: A play by play for posterity’s sake.


MONDAY: We arrived at Methodist University in downtown Memphis at ten and after an hour of waiting finally got assigned a room. A funny anecdote: Gavin and I were sitting on the couch in the room and the nurse comes in to initially meet me and had to ask which one of us was the patient. We both laughed and I raised my hand. I didn’t ‘look’ sick and it often surprised people that I had a blood disorder. Monday turned out to be the calmest of all days except for the million needle pricks I received while the nurses drew blood for tests and tried to put an IV in my arm. First the right arm, then the left, then a new nurse tried again on the right. Finally, the nurse has success with the IV insertion but within the hour I was told I was to receive a PICC line the next day that would replace the IV. All that poking for nothing. Gavin and I ordered in pizza that night and had a good evening trying to keep each other calm and prepare for the upcoming doom the next day. PICC line insertion, bone marrow biopsy, and the start of my first Atgam IV infusion.


TUESDAY: Tuesday began very early. Because my platelets were so low and I had upcoming procedures that day, I had to receive 5 buttons of platelets at four that morning. I also learned that blood was to be drawn every morning between three and four regardless. The doctors wanted blood test results ready for each patient by the time they made their rounds during business hours. Apparently, the hospital lab needed four hours to run a CBC. No rest for the weary.


At ten that morning I was wheeled down in a transport bed to have my PICC line inserted. My nerves were shot because I knew I had a bone marrow biopsy immediately after that adventure and I made a point to tell every nurse I saw that I was anxious about the procedure and the possible pain ahead. Turns out my ‘complaining’ benefited me greatly because they all felt sorry for me and ended up calling in the head doctor. “He’s the best. Two minutes is all it takes.” That information made me feel much better.


(A PICC line is an IV line put in your upper arm so that blood can be drawn or chemotherapy administered. It can stay in the arm for several months.)


An assistant used an ultra sound machine to look at the deep veins in my arm and then selected the one that would work best. The insertion site was numbed with lidocaine so the only pain felt was the needle from that. The doctor watched a live x-ray machine as he inserted a very long needle into my arm and then the tubing for the PICC line. The tubing traveled all the way up my arm via a vein that entered my heart. The procedure was nerve wracking and foreign, but painless. I now had two plastic access ports hanging out of my arm and felt like a bionic woman.


As soon as I got back to my room my on call doctor and several technicians were ready to begin the bone marrow biopsy. Again, I had “complained” about my previous bone marrow biopsy experiences and my doctors gave me some good ‘happy’ drugs that calmed my nerves and kept the pain to a minimum.


(Let me stop here to tell you about my history with bone marrow biopsies (BMX). My first BMX was in 1996, and as a teenager it was quite the painful experience. To explain, a BMX is when a sample of bone marrow is taken from the back hip bone. You lay on your side, they numb the insertion area (hopefully very well) and then with what seems to be a screwdriver type motion, they ‘drill’ through your back hip area to the hip bone then in through the bone to the marrow, taking samples of your marrow with long needles. The ‘drilling’ they do to your hip is the most unnatural and teeth-jarring feeling to endure and if you aren’t highly medicated it hurts like crazy. It is definitely not for the faint of heart. I had a second BMX in 2007 and my experience was much better than the first so this summer when my first doctor ordered another one I knew what I was getting into and had no qualms. I should have had qualms! The doctor had to stop halfway through the BMX because the pain was unendurable. I had burst into tears because the site had not been numbed properly and my ‘happy’ drug had not yet kicked in –it decided to wait until after the doctor had cleaned up and left the room. Because that BMX could not be completed in house, I was scheduled to undergo anesthesia the next week and have it done in a hospital setting. On a pain level, the BMX in the hospital was a breeze, however, even though I was out cold and he could have sawn me in half, I found out after the fact that he didn’t get enough of a sample of my marrow. Great!)


This led to the reason why I had to get another BMX done in the hospital on that eventful and stressful Tuesday. Fortunately, they gave me some seriously good drugs. I do remember giggling a lot and making reference to the ‘party pants’ I had on. Hospital gowns are downright demoralizing so I was trying to regain some dignity by wearing some knee shorts that covered the lower portion of my body. My shorts were bright and colorful and although I had never before coined them my ‘party pants’, the relaxation drugs flowing through my veins decided they should be deemed as such. I informed my doctor that “he got to see my party pants” and then rolled over on my side giggling to prepare for the BMX. Thankfully the drugs continued their work and I calmed down into a nice warm silent stupor and beside all the “pressure” I felt from him digging into my hip, the experience was not so bad. He cut into one site and dug around in two locations but came up with nothing – my marrow was ‘dry’. So he had to cut again about an inch away from the first site and was able to get a sample. The lab technician next to him reviewed what he had taken and with the “we got enough” verbalized, they patched me up and let me sleep off the drugs. Checking the incision site the next day, I noticed it looked like a vampire had bitten me – two little fang marks red and bruised. Nice.


Tuesday afternoon passed in a fog of left-over drug sleep for me. At ten that night we started my Atgam chemotherapy. I was to have five days of it at twelve hours each session. Each session would begin at ten in the evening and hopefully finish by ten the next morning. The session usually finished around eleven though because they always started the IV at a slow pace and then brought it up to speed to make sure no serious reaction occurred. My blood pressure and temperature was taken every 15 minutes for the first two hours, then every thirty minutes for the next two hours and finally every hour until the session ended. Guess who didn’t get a good night’s sleep that night? 


I also began taking the pill form of chemotherapy that night. Cyclopsorine, a huge pill that tasted like metal, but was seemingly less harmful than the Atgam, was to be taken twice a day, one at ten in the morning and again at ten at night.


At 11:30, an hour and a half after the Atgam started, I had my first reaction. The chills! Not full blown rigors, but definite teeth jarring, bone shaking chills. The sweetest nurse in the world, Sheila, who had been monitoring me all night, was an experienced Atgam administrator so she knew exactly what to do to help. My husband began to rub my arms and legs to generate heat and Ms. Sheila grabbed the morphine. Ten minutes later I was calm and relaxed and in another drug-induced sleep. Tuesday was finally over.


WEDNESDAY: After having been roused so many times to have my vitals checked the night before, the early part of Wednesday left me exhausted. I took my cyclosporine as scheduled and at eleven the Atgam finished. Being hooked up to an IV for 13 hours doesn't sound like that big of a deal, and it really wasn’t, except for the fact that my bladder needed to make several trips to the bathroom. Unplugging the IV machine and taking my buddy to the bathroom every few hours got old real fast. I finally named my IV stand Cedric and would tell him to “come along, Cedric” as we made our way to the bathroom. He was always willing to accompany me. The day was relatively calm except I began to have severe debilitating headaches. Think a migraine on steroids. Percocet and morphine together wouldn’t stop the pain so they ended up giving me a drug that just knocked me out. The cyclosporine was blamed for the headaches so the doctor advised them to pre-medicate with Percocet before my next round of cyclosporine. Sounded good to me! The Percocet had oxycodone in it; so again, nap time was unavoidable after I had my cyclosporine.


The dressing on my PICC line had to be changed the day after it was inserted so the nurse brought in her cart of medical supplies and got to work. She removed the previous dressing and then began to clean the area with the mother-load of all disinfectants. The sting of that cleanser on my open wound was incredible. Lemon juice and a paper cut is child’s play compared to that sting. And it was very unnerving to see plastic tubing protruding from my arm.


The word on the street was that I was to be moved to a different wing where stem cell transplant patients resided. Undergoing immunosuppressive drugs created the need for a higher level of sterilization and disease prevention. The wing I was currently in was for those patients who were recovering from various kinds of cancers and operations but their immune system was not being attacked. By seven that night, I was moved to the exclusive Crews wing, an area of twelve beds and four nurses and a room twice as big as the one I was in. And a mini-fridge to hold any necessary ice cream.


The Atgam began again that night at ten and having been pre-medicated with the Percocet for the cyclosporine I slept through most of the night even in spite of the constant monitoring by the nurse for Atgam reactions.


THURSDAY: Thursday started out early for me as I noticed what looked like bites on my upper legs. I thought the new room came with bugs but before I knew it both my thighs had broken out in a harsh red rash with raised welts that itched like crazy. My second reaction to the Atgam was hives. Drugs came quickly by the nurse and in no time at all, I was itch-free and more relaxed. My hemoglobin blood level had dropped however and I had to receive a unit of blood. The headaches were back along with a third reaction to the Atgam, a meningitis-like tightening of my neck, shoulders, and back. It felt as though I had been in a major car wreck with severe whiplash and that a giant man had me by the neck and wouldn’t let go. I’m sure that didn’t help the headaches any either. A new drug was pulled out of their magic hat to relax my muscles and it was a doozy. The headache was nonstop that day and was only slightly abated by all the drugs. The doctor ordered my cyclosporine dosage to be lowered from 250mg to 50mg in hopes to get the headaches to stop.


And guess who had to have another BMX? ME! Apparently, my bone marrow was sparse because even with a lab technician reviewing the sample the doctor took on Tuesday, there still wasn’t enough sample to get an accurate read. So Thursday’s agony was added upon with the knowledge of another BMX.


FRIDAY: Friday was another day of headaches and the aching tightness of my neck and shoulders. The BMX came and went with little fanfare, but the ‘happy’ drugs that accompanied the procedure were greatly welcomed. They were great at relaxing me and my body aches and allowing me to get much needed rest from noon to four o’clock.

If Friday was good for nothing else, it proved the wisdom in our decision to not tell everyone I was going into the hospital for treatment. Keeping my stress and anxiety to a minimum was our number one goal and we knew the fewer people who knew of my upcoming treatment the better. Fielding phone calls, texts, or visitors was something I definitely wanted to avoid. Undergoing chemotherapy was stressful in and off itself and the burden of portraying an ‘all is well’ exterior to the concerned was one I didn’t want to muster through. Gavin became the communicator with my immediate family and the few friends I chose to tell as it was difficult many times for me to get enough mental and physical strength to do it myself.

The evening was spent relaxing and the Atgam started on time again at ten.

SATURDAY: Saturday was a day of more pain and headaches. No more procedures or poking around on me but I was still battling with the fuzziness of the previous pain medication. And what was worse, I knew I would need more of them to get the pain to subside. Looking back, there were several days that weekend that were an absolute blur. Between the drugs to help with the muscle tightness and the headaches, I was in a fog for several days.

One thing I was so thankful for was the ability to ask my family to pray when the pain became unendurable. I would spend hours rubbing my head to try to ease the pain and Gavin would send a text to my family to pray. And without fail, soon after they began to pray, I would get relief and sleep would come. I was so thankful for a praying family and a God who was and is my Healer. That weekend, I learned that the Lord doesn’t always walk us through situations, but sometimes he walks us to situations until we find Him in a more real way.

My last round of Atgam was scheduled to start that evening and my hopes of getting out of the hospital on Monday were high.

SUNDAY: I finished my last session of Atgam Sunday around eleven and was anxious to get through the day. I knew they wouldn’t let me go the day I finished my treatment but Monday was so close! And then the headaches came back. Again! I spent Sunday wishing I was in church but lying in bed ALL day. I had made a point every day to get ready, clean up and look presentable, but all Sunday got was a teeth brushing. And that was a great victory. 

MONDAY: Monday brought a lessening of the muscle tightness but also another reaction to the Atgam. My entire torso, front and back, broke out into a bright red rash. Thankfully it did not itch and I wouldn’t have noticed it even, except the nurse pointed it out to me. The doctors made their rounds that day as usual and as soon as they saw my rash, they were concerned and told me I wouldn’t be going home that day. Aw, shucks! They were also still concerned about getting my cyclosporine levels up to an effective range. They had lowered my dosage previously to help with the headaches but that also lowered the drug’s effectiveness. I also started feeling achy as though I had the flu. That feeling you get where all you want to do is curl up in your pajamas with a good book and sleep. Goals for the day were to keep an eye on the rash, medicate for the muscle tightness, and increase my cyclosporine dosage.

TUESDAY: My rash became worse and had started traveling up my neck. This totally freaked me out but because it still didn’t itch, I was able to keep my cool. The muscle tightness was had lessened even more and I was headache free. The flu-like symptoms still persisted and I would get so cold and start shaking with chills. Burying under blankets helped until I would switch from freezing to death to sweating buckets. I’ve never been one to sweat easily so waking up out of sleep covered in sweat was a new experience. My whole body would radiate heat and it felt like I could shoot fire out of my hands. I would sit for hours fanning myself with anything I could get my hands on and naturally, every place to sit in a hospital is plastic or leather so it just made it worse. Ugh. Sorry for the complaining but sweating is just so gross to me.

WEDNESDAY: During their routine blood draws early in the morning, the nurses noticed I had a fever. Probably the scariest situation someone undergoing immunosuppressive therapy can have is a fever and although mine was only 100.4, it was high enough for them to initiate their standard protocol for fevered patients. They took four cultures from my blood through my PICC line, then poked me in my other arm to draw blood to make sure it wasn’t my PICC line that was infected, I had to give a urine sample and was wheeled downstairs for a chest x-ray. They started me on antibiotics when I got back to my room. Since I had a fever, the Infectious Disease people had to come and visit me. They asked me every question known to man about where I had been in my life and what I had done. After doing a complete physical exam they finally left and I was never more happy for them to go. An adventurous morning that started at 3:45 and didn’t end until after nine. Needless to say, I was exhausted so I slept the morning away but woke up later, fever free, and feeling much better.

The newest development was that I had been having problems with my blood pressure. Normally, I’m about 110/60, but during the receiving of my Atgam my blood pressure would get as high as 170/100. However, lately it had been very low, about 90/40. Around breakfast time that morning, I was sitting on the side of my bed and an attendant had just taken my blood pressure. Before I knew it, I had fainted back on my bed. Great, just another reason to stay another day. Sigh.

The dressing to my PICC line was due for a change, but thankfully it wasn’t a painful as the first time it was changed. The bandage used to protect the line was exchanged for one that wouldn't stick to my skin as bad, but the new bandage irritated my skin like crazy. Also, one of the two lines that were used to draw blood would no longer flush clean. That scared me, but the nurses said it was okay as long as one still worked. I was still paranoid about it, but thought I was going home the next day and it would be removed anyway so I didn’t say anything.

Feeling weak and achy kept me from taking showers so my hair got ignored for several days. (All the women with long hair know that washing your hair in a tub setting is counterproductive.) Anyway, Gavin helped me wash my hair as I knelt over the tub and that provided a bit of much needed comic relief after the morning I had had. He did a very good job, by the way, but I don’t see him quitting his day job.

THURSDAY: I awoke feeling much better on Thursday but again passed out from low blood pressure once I tried to get up. Upset because I was afraid this would be a daily thing, I became anxious. I was so ready to feel normal again and be cleared to go home.

I received results from the bone marrow biopsy they did on Friday. My diagnosis was definitely aplastic anemia, although they still considered it ‘smoldering’ aplastic anemia because I’ve had it for so many years yet wasn't transfusion dependent. If you read about typical aplastic anemia, it’s scary. Bleeding noses, gums, a constant dependency on blood transfusions, and quick searches for a bone marrow transplant donor to keep the person from dying. I had never had any of those symptoms and the first time I ever received a blood transfusion was in the hospital after they started chemo. I’m thankful the Lord has had His hands on me throughout my life.

The doctors made their rounds and told me they wanted to watch my rash one more day and ordered a skin biopsy for later that afternoon. They wanted to test the rash for serum sickness from the Atgam. I wasn’t nervous about the skin biopsy until nurse Christie walked in with a cart full of supplies. She asked if I need some relaxation medication and that’s when I got nervous. Anytime drugs were offered before a procedure, pain was usually involved with whatever they were doing. I told her I had already had two bone marrow biopsies that week and was doing my best to stay away from narcotics that made me fuzzy headed. (When my headaches stopped, I switched from the Percocet to Tylenol and had been clear-headed for a day - it felt good to be in control of myself again.)  Christie said she would numb the site with lidocaine anyway but just wanted to offer drugs if needed. I declined and said I would tough it out. I lay on my stomach with my arms supporting my head and she numbed the site near the top of my right shoulder - a less tender area. Two small stings from the needle were all I ever felt. I never felt her scoop out a BB sized portion of my skin and only when she said it would require one stitch did I realize she was sewing my skin up a bit. Never felt it. Thank the Lord.

The evening was spent relaxing and I just knew tomorrow was the day I was to go home.

FRIDAY: Having passed out the two previous mornings, I had been very careful to sit on the side of my bed for a minute to get my bearings before I would stand up. I woke up in the middle of the night having to use the restroom and before I knew what I had done, I had jumped out of the bed and ran to the bathroom. That’s when I first realized I felt like my old self. I had completely forgotten I was sick and in the hospital. Sometimes it's good to forget and sometimes it's just stupid because a fall flat on my face would not have been a good thing. Around eight that morning the attending doctor came by and told me that he felt very good about me going home today but Dr. Yunus wanted to see me before I left. Gavin and I got the room packed up and cleaned up and everything taken to the car for the trip home and by nine o’clock I was sitting on the edge of the bed ready for discharge. Turns out, I was in for a long wait.

My doctor came around 2:30 and told me that he was seeing positive results from my treatment. My blood levels were trending upwards and he thought it would be okay to remove the PICC line from my arm. Fantastic news! Not having to keep the PICC line in meant he didn’t foresee me needing blood transfusions on a regular basis. My cyclosporine levels still weren’t where they needed to be so I had to come in for a checkup the following morning but other than that I was free to go! Gavin and I waited for the nurse on duty to get my prescriptions ready, my skin biopsy bandage changed, and to remove my PICC line.

What was supposed to have been a seven day hospital stay turned into twelve. I could never have imagined all the things I would go through; bone marrow biopsies, unimaginable headaches, and a lot of drugs. Thankfully, my husband was there the entire time and helped me through the best and worst of it. If the treatment is successful, and there is over a 50% chance that it will be, it will have all been worth it. If the treatment is not successful, a bone marrow transplant is in my future, unless of course the Lord heals me completely or returns for the rapture of his children. Even so, come Lord quickly!



2 comments:

  1. Alicia, I am so glad that you posted this. When we last talked, you were getting ready to go see the doctor in Tampa. I am believing that this has worked!! I totally laughed out loud when you said that you needed your IV stand Cedric! I can completely hear you say that in my head! Love ya!

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