by Jeni Birr
The next day I started my chemo and radiation. I was supposed to take the chemo one hour before the radiation began and couldn’t eat for two hours before or after taking the chemo. I was told I might not need the anti-nausea pill I was prescribed so I didn’t take it the first day. This was a mistake. On the way home from radiation I got very sick. I had to ask Eric to pull over and had the door open and was vomiting in the street before he even made it to the side of the road. When we got home I got sick again. I eventually took the anti-nausea and it went away, and I took it the rest of the week. I mentioned this to Dr. Abu-Isa when I met with him the next week, and he told me a lot of people experience bad nausea the first day, but then they were fine the following days. I didn’t want to take the Zofran, the anti-nausea, because it was causing horrible constipation I thought I was done with now that I was off the steroid, so he prescribed a different, weaker anti-nausea called Compazine, which worked just fine to ward off the nausea once I discovered I needed to take it about an hour and twenty minutes before the chemo pill. And it did not cause constipation. Hallelujah! I know, probably more than you wanted to know, but I’m telling you, I wouldn’t have included that if it weren’t a very real problem.
Several weeks after I started the radiation my hair began to fall out. It itched like wildfire and they told me to use Aloe Vera and Aquaphor, but I couldn’t really get it to the scalp because there was still hair in the way. Eric didn’t want me to shave my head yet because he wanted me to wait and see just how much fell out because maybe I wouldn’t need to shave it, and thought we should get a wig first because I might be self-conscious about having no hair (even though I had shaved my head twice before when I’d grown tired of my dreadlocks). Once enough had fallen out and it was clear I would not be able to just comb it over, we shaved it off and man did it help! I just thought it would make my scalp more accessible for the aloe, but it just stopped itching altogether.
I had done a lot of research on wigs, and already had a few from my performing days that I never wore, but turned out there was an American Cancer Society shop a few miles up the road that gave me one for free. They had a very limited selection and I didn’t love the color, but I did like the style. It was synthetic so it held its shape even after washing. I also called my insurance company and it turned out they would reimburse me for a wig purchase if I had a prescription for a “cranial prosthesis” which Dr. Abu-Isa was happy to write for me. If I was going to wear it to work it had to be human hair because synthetic would melt if I got near anything too hot and between the bagel toaster, the Panini grills, the soup well and the rethermalizer, not to mention the giant rack oven that was usually at 420 degrees to bake baguettes all day; staying away from heat sources was not an option. So one Saturday we went to the local beauty supply store that our friend, Julie, had recommended as having quite a wide selection and helpful staff and tried on probably a dozen before settling on one that was my second favorite, but my first favorite just didn’t fit right.
The next weekend I wore one of them Saturday, when we met Brad and Julie at a park by our house to watch Brad and the crew of Julie’s new show, “Low Winter Sun” play softball. It was very hot this day and they kept losing players, so by the third game, Eric was playing. The next day I wore the other one to a Detroit Tigers game that Eric’s work bought out the Pepsi Porch for, something they do every year, but it was even hotter this day and we had no seats, only the bleachers in direct sunlight so we stayed an inning or two and then went home to watch the rest of the game inside. Normally, I love the hot weather, but I was still coming off of the steroid, and taking chemo every day, so I really did not have the energy to keep walking around the concourse where it was cooler. Problem was, my hair was still falling out and I was still getting radiation to my head, so my scalp was very tender and wigs were very uncomfortable, so I didn’t wear either one again for quite some time.
During these few months it was also a constant administrative struggle with the disability company. Thank the Lord I had even added disability to my policy at the beginning of 2013 because it was only a few dollars per check, but man was it a headache filling out all the necessary forms and having the doctors sign off and fax it over and they needed updates every other day it felt like and if the administrative assistants at the radiation place didn’t fax something over, or the disability company didn’t get it, my payments were delayed, which were only sixty percent of my salary to begin with, and now I had to mail in checks to Panera to pay for my insurance premiums up front because they couldn’t deduct it from my check anymore. I was also having a hard time with the Social Security Administration in the beginning as well, but fortunately, it eventually all got sorted out; after many many hours of my indefinite amount of time left in this world on the phone with everyone and their neighbor’s cousin. I must also input here that my aunt Jan in particular, but also a few others, did offer to help with this element, but I declined. As big as a pain in the neck that it was, honestly, I didn’t have anything else to do, and I need to always have something to do. I wasn’t even allowed to drive because the chance of seizure was still eminent.
About a week before the end of my radiation treatments, in early July, I started to itch. Not incredibly bad, but all over my body and with no sign of rash or dry skin. It would move around and no amount of scratching would really satiate. I asked every one of my doctors: oncologists, nurses, physician, even gynecologist, and no one had an answer. I tried every possible anti-itch solution under the sun, but only a few seemed to do anything at all. This went on for many months.
CHAPTER 17
At the end of the six weeks of radiation, I had a month off. Unfortunately, this is when I scheduled all my other appointments I couldn’t have while in treatment, like my root canal I had canceled way back in April. I know most people would never expect to hear these words, but man was I happy to get that done. That tooth had been bothering me for years! I also had my yearly physical (for the first time since I needed one for summer camp when I was thirteen) and my annual visit to the lady doctor.
I also had a very nice trip down to Georgia to visit my mother and her whole side of the family. My grandparents live in a lovely retirement community about an hour outside of Atlanta now, and my mother is only several hours away so she and Tom drove to Atlanta, picked me up at the airport and then we all went to my grandparents’ place. My Aunt Jan even flew in from California on an airline credit she had from a flight she’d missed earlier in the year. She is one of the most open-minded, enjoyable people I have ever met and I’d only seen her once for a few hours probably five years prior when she was in town for a high school reunion and before that, not since the summer after my freshman year of college, so at least another five years.
It was lovely to see everyone. I only stayed for a few days, but it really was nice to get away for just a few days and see Georgia, my second favorite state. While I was down there, Eric called me one morning to let me know that Dr. Fata, my original Oncologist, the one with the fancy brand new office, had been raided by the FBI the night before and it was all over the news in Michigan. Apparently, the expensive Iron supplement shot he had said I needed, he recommended this to everyone, even if their iron wasn’t low. He also continued treating cancer patients even after their window of life was clearly closed; or what’s worse, he continued treating patients who were in remission and didn’t need chemo or radiation at that time! He didn’t think we should do surgery on me because it was “too dangerous.” He was just going to start chemo and radiation right away, which is why Eric had insisted on a second opinion and we were referred to Dr. Sagher. In Dr. Sagher’s professional opinion, I probably would have died before the chemo or radiation had a chance to do anything if we hadn’t operated. This made me sick to my stomach. It still sends me into a silent rage just thinking about this asshole that was perfectly happy to just let me die for his own profit. I am usually a kind, compassionate, caring person, but this man, who……………I just
hope he’s being violently violated in some prison somewhere. What a giant bag of xxxxxx.
Deep breaths. Anywho, I had a nice month off of cancer, in a sense. I still had to take my anti-seizure medicine, but otherwise, I was treatment free for one month until my first post chemo and radiation MRI to create a new baseline, as it was explained to me. This was on August 9, 2013. Guess what the results were? It was clear! The radiation and chemo had apparently knocked out the other five percent of tumor that Dr. Sagher didn’t feel comfortable removing. Dr. Junck, my oncologist, told me the scan looked about as good as it could for this stage of the game. We would begin what is called “cyclic Temodar” for twelve months. I would take Temodar, the chemo pill, at a much higher dosage for five days of every four weeks. This time, I would take it at bed time. We were able to pick up the first cycle at the hospital pharmacy that day.
Towards the end of the month, two friends and former co-workers, Kristin and Lisa, threw me a giant benefit. Eric did not love the idea, but I cleared it with him first, and he also spoke to a trusted friend that told him “sometimes you have to let people help you.” It really was beautiful. It was a silent auction at Champps, the sports bar that Andrea went to all the time that Dwayne, Kristin’s husband, worked at. Kristin and Lisa did such a phenomenal job getting donations from restaurants, spas, stores and other businesses and promoting to get so many people to attend, that it was such a huge success. I even brought a few pieces of my own artwork, which did not get bid on; but Lisa, who was a painter and had donated a few of her own pieces, and I exchanged work. Her painting, which reminds me of Birch trees, is on my living room wall right now.
The first cycle was symptom free. I took my Compazine, the low-grade anti-nausea about forty five minutes before the Temodar, and had no issues. The second cycle we drove an hour back to Ann Arbor to pick it up at the hospital pharmacy because no local pharmacy carries it, and we were informed that my insurance was not going to cover it. We spent hours on the phone in the hospital basement right outside the pharmacy trying to figure out why they had allowed it the month prior, but no one could tell us. Apparently, my insurance flat out requires I get my Temodar from a certain mail-order pharmacy called Curascripts. For whatever reason, my blood work, white blood cell count, was not high enough that I could even start cycle two for another week anyhow, but it was still a very frustrating wasted trip.
October 4, 2013 I had my second post chemo and radiation MRI, which also came back clear. We were also still having follow-up visits with Dr. Abu-Isa at this time. I had an appointment with him about ten days later where I asked him to feel the back of my head where I was convinced I felt bumps that were excruciatingly itchy. He said he didn’t feel anything underneath the half inch of hair I had grown back by this point, but I was certain. I didn’t push it too hard because at this point, I’d been itching for four months and no one had a suggestion, so honestly, I just accepted it. Dr. Junck’s office also told me I needed to get a flu shot, which I was very torn on, but I got it and I did not get the flu. Thank God.
Tuesday, October 22 is when I got my flu shot and when the Temodar was ordered from Curascripts. When a prescription is ordered through Curascripts, it has to “process” for twenty four to forty eight hours and then they call the patient to schedule delivery, which cannot be done before it has finished “processing.” When I hadn’t received a call by Thursday, I called them and they informed me they had called me four times over the past twenty four hours, calls I never received, because they had a question. They were out of the brand name, would the generic be okay? I told them I didn’t see why not, but I would check with my doctor and let them know, which God knows why they didn’t just contact the doctor. The next morning I called Dr. Junck’s office and confirmed the generic would be just fine and called back Curascripts. This was now Friday morning. Saturday morning I called them yet again to try to schedule delivery but there was still some problem and I was told I would receive a call back. Eventually Eric got involved, spoke to a supervisor and her supervisor, and eventually Monday we scheduled it for overnight delivery for Tuesday. The brand name Temodar showed up.
I was scheduled to start that night, cycle three now. I didn’t expect any issues, but this first night I had a horrible allergic reaction to the medication, even though it was the exact same I’d been taking since May. The worst part of it was that about a half hour after I took it I got this ferocious burning sensation all over my entire body. The best analogy I can think of is that it felt like thousands of tiny matches trying to poke their way through my skin from the inside, all over my entire body, with the worst of it inside my vagina. It was excruciating! I had never had an allergic reaction to anything before, so I didn’t know what this was. It went away after about forty minutes.
Then, about two hours after I took the Temodar, just as I was about to drift off to sleep, my throat started to close up. I could still breathe fine, and I could still swallow just fine so I wasn’t too worried about it, but this is what clued me in to the fact it might be an allergic reaction. I took a couple Benadryl, but about five minutes later I got crazy nauseous and immediately threw up. I spent the rest of the night dry heaving because there was nothing left in my stomach. This was one of the worst nights of that year. I slept on the bathroom floor for about twenty minutes at a time.
The next four nights I did not get sick, but I did get the horrible burning sensation just as bad. I wish I had realized it was an allergic reaction, but I just didn’t. For five straight nights I just put up with tiny matches. It was really rather terrible, but I dealt with it. I wish I could say it got better as the cycle went on, but it did not.
Several days later I got a rash on my stomach, around November 6. This was particularly itchy at moments. Not consistently, but when it itched, oh buddy, did it itch. We went out to Pittsburgh to visit our friends, Julie and Kase, who we had met in Florida, but Julie had moved back home to Pittsburgh before we’d moved back home to Detroit. It was only about a five hour drive and I’m surprised we hadn’t gotten together sooner. We went to the Detroit Lions vs. Pittsburgh Steelers game, which the Steelers won handily. It was pouring. Rained the whole game. We went to the Hofbrauhaus afterwards, and I remember my stomach itching horribly. I had to excuse myself to the restroom, but again, no amount of scratching would satiate the itch. There seemed to be weeks that didn’t itch as bad as others, but I wasn’t keeping very good track, so in my mind, I was convinced it was related to my birth control which had changed a few times over the past few months for various reasons.
The last day we were in Pittsburgh as we were slowly packing up to get back on the road, the girl we had asked to watch our dog called to ask where he might go if he got out. There had been a very bad storm the night before, which had hit Detroit as well, and the gate blew open. She checked that it was closed when she let him out around 6am, but when she let him out again about 9am before leaving for work, it had blown open. I’m sure it took incredible guts for her to call us and let us know, but I’m super glad she did. Fortunately, I had just the past week walked up to the pet store and happened to get him a customized collar tag with his name and my phone number, but I was still terrified he’d get hit by a car before a concerned citizen found him. We threw everything in the car and were about to start speeding back home when she called to say she found him and everything was just fine. He was only a block away, playing in a pile of leaves, and he came running as soon as he saw her and jumped right in her car. I’m not going to lie though, those ten minutes probably stole years from my life. This was the first time I had even an inkling of what my father was probably feeling the night I had walked up to my camp seventeen years ago. I wished I could have apologized some more to him for that.
We finished our coffee and said our goodbyes and planned for them to come visit us around the following March or April and we headed home. Several days later my chest broke out in an itchy rash. At the end of the month I started cycle four, which went exactly as the
last cycle had: violently ill the first night, and evil burning sensation all five nights.
On December 9, 2013 I finally scheduled a dermatologist appointment because I finally had something of note to show a skin doctor. She said it was very likely not a drug related rash. Those are normally over the entire body, not just small, concentrated areas. She took a look at my abs and my chest, and took a little biopsy to send off to the lab, and gave me a prescription for a topical cream. This same day I developed the same rash on my left arm.
The next day I had my third MRI, which also came back clear. I had a follow-up appointment with Dr. Junck where I mentioned the new symptoms to the Temodar, to which he suggested Benadryl, two to start, three if I thought I needed it. Three turned out to be necessary, but also turned out to pretty much take care of the horrible sensations. He also prescribed a now third anti-nausea that I only took on the first night of the cycle, but it seemed to do the trick, for at least the next few cycles.
I had a follow up appointment with the dermatologist on December 19, 2013 where she determined it was “Folliculitis,” inflammation of the hair follicle, and she prescribed a different cream and a foam, one for morning and one for night. These seemed to do the trick for a week or so, but the damned itching just came back. It always did.
We had a wonderful Christmas, despite itching and chemo. My Aunt Jan was waiting in the parking lot at a Walmart in California earlier in the month to get one of my nephews an Xbox One, which Eric really wanted and I could not find one anywhere, so when I mentioned this, she offered to see if she could get two. I jumped at the chance, expecting to pay her back, but she wouldn’t let me. It showed up the week before Christmas. My computer had been overheating and having major CPU issues that we really didn’t have the money to fix, so with the money saved from the Xbox One, Eric bought me a Surface 2, which was equally as difficult to find, but we eventually got one a few days before Christmas. On Christmas day our friends Brad and Julie came over, I cooked, and we all ate and drank and played silly board games. New Year’s was even less eventful. At least we stayed up until midnight, but we didn’t go anywhere or have anyone over. I had just completed a chemo cycle the night before.
