To be done, or not to be... that is the question

It has been a long month. Over the past 30 days or a little more, I have received good news and bad news. The good news is that I am nearly done with chemo. The bad news is that I am nearly done with chemo. I have mixed feelings about this new set of information. It is a hard thing to understand, unless you have been through this.

During the middle of September I entered the hospital in Murray to complete a cycle of high dose methotrexate. This kind of chemotherapy is given in the hospital, and requires a stay of about 4-6 days each time. The cycle consists of two back-to-back treatments, which meant that once I was released from one treatment there would be a break of just a few days at home before I would return for the second one. It was during the second treatment of this past cycle that my liver tests started coming back elevated. Liver function tests are something that are monitored very closely throughout treatment. During the year my body has been put through some intensive chemotherapy and there have been side effects and tests needed, which have been as a result of the treatments. My white blood count as well as liver functions have been able to regenerate nicely during the cycles. The problem now was the results being elevated and not coming down soon enough. Long-term liver damage is not something my practitioners wish for me to have. When I returned to the hospital for the second treatment, it was then that I started finding out the seriousness of this. I arrived on a Friday night for check-in to prepare for chemo the next morning. I have followed this same pattern the entire year. It is what works for me. Saturday morning, then afternoon, and finally late afternoon came and went. The liver function tests were delaying the chemo. The treatment from the previous week had apparently not gotten things back down to normal levels yet. And this was a problem. I couldn’t do anything except wait. Sunday morning the pharmacy brought the prepared chemo to my room on the 9th floor and the nurses connected me. My liver had regenerated enough overnight. By Monday however, I had a nice visit from Bruce Bolonesi, PA-C, who showed me the blood work from that day. It had dramatically jumped and I was told that my oncologist may want to omit the last two cycles of methotrexate altogether. Many thoughts crossed my mind. Will the cycles I had done so far be enough if I stop? Is that the right decision to stop? In the years to come will I regret not having done all of the cycles? Did I do them for nothing? Did just a few cycles help or contribute? What about the side effects; will there be any permanent damage? What if the doctor gives me the option to make the choice, what should I do? What if this is my last stay in the hospital and I do not return to the place I have known during this whole year; the people I have grown to trust with my life, and who I’ve bonded with? There were many questions and emotions once I found out it could be the end of the high dose methotrexate. Don’t get me wrong. I also thought it was some of the best news I had received in a long time. Within just a couple of weeks things were confirmed that I would not be doing the last two cycles and would instead focus on the last two treatments of adriamycin. That was that. It was still a decision met with mixed feelings, however I could see the logic of looking at the harm being caused versus the benefits. This pushed everything forward on the schedule. Dr Litton said that without the other chemo drug, the last two cycles would be only 21 days apart and not 36. With the cancellation of the methotrexate, and having less days between the last 2 cycles I would be done before Christmas! In fact, I would be done before Thanksgiving! My last treatments of adriamycin would be October 5th, 6th, and 7th. Then the last and final treatment would be on October 27th, 28th, and 29th. This felt exciting to get it over with sooner than expected, yet it felt rushed and I felt afraid of having one of the very strongest chemo drugs so close together. Adriamycin is commonly referred to as the “red devil of death” among some people and practitioners.

Several days into the month of October, after the adriamycin, I developed a numbness and tingling in my feet that got a little bit worse by the day. It eventually went to my hands, but only just slightly. This is a condition called peripheral neuropathy and is a nerve damage that can be caused by some chemo drugs. It can be short term, long term or permanent. The recovery can be long term and there are things that can be done to treat it such as massage, acupuncture, physical therapy, over the counter vitamins and amino acids, as well as prescription medication. The neuropathy can become a very serious condition where a person cannot feel their hands and feet, and start having trouble with the simplest of tasks such as buttoning a shirt. So far, my neuropathy has been mostly in my feet, and was only bad for about a week. The platin chemo drugs have been known to cause this neuropathy, and one of the drugs I had during the first 4 cycles was called cisplatin. I have not had any of this kind for about 2 months though. During my 10-day follow up appointment with Shirley Bleak, D.N.P., F.N.P., we discussed the possibility that because of the neuropathy I may not have my final chemo treatment at all. Mostly we talked about shoes and exchanged our favorite websites, places to shop and brands to buy. But we talked about the real possibility that Dr Litton may meet with me on October 27th and say that I am done. Period. I will likely have the final treatment, because I do not believe that the adriamycin causes any neuropathy. So there is a chance that I will have my very final treatment in just a few days from now. If so, hopefully this will be the last treatment ever for the rest of my life. There is also a chance that I am already done and just do not know it yet. Both of them frighten me just a little for some of the same reasons quitting the methotrexate was hard. Most of it is just not knowing; the unknown.

I should mention that my hair started growing back just in time for it to start falling out again; eyelashes, brows, and a whole set of tiny head hairs. I am not sure how they were able to grow because I did not stop any treatments throughout the past months. The little bit of new growth will fall out and I will start the process all over again during the holidays; slowly but surely. I am looking forward to Thanksgiving; eating, being finished with chemo, feeling better and better each day, feeling the holiday spirit around me, and being able to give thanks and continue to watch the amazing blessings unfolding before me… about my life.