So I haven’t been the most diligent of bloggers. This year has been one of the most challenging to date, in terms of keeping up with…everything. Even now, on my messy desk, I have a stack of paperwork for my job, on top of a stack of paperwork for home, and sandwiched inside is a folder of medical paperwork that needs my attention as of last week. Some holiday gifts are still not wrapped and mailed, while others still have not been acquired. Even in writing this, I am not giving attention to other things that are nagging me to be done. But this wrap up of 2014, it too deserves my attention as much as anything else. I tend to not discuss my deeply personal life in this blog as much as my Dreamwidth account, which is viewable only by a select few friends, but it’s worth a synopsis here, I think.
In February 2013, my husband and I returned to our home town to live, so that I could be part of a phase II clinical trial of a potential cancer treatment. My particular cancer is rare, and apart from surgery and radiation therapy, does not have a reliable systemic treatment (i.e. Chemotherapy). Memorial Sloan-Kettering Cancer Center in NYC has in recent years been doing a great deal of research on this rare cancer, which is a rare thing in itself. There isn’t a lot of funding and focus on rare cancers; everyone is interested in
saving boobies breast cancer I guess. At any rate, MSKCC has been doing trials. In 2013, I was going to be a part of that. But it fell through, thanks to some strict guidelines in the trial protocols and a couple of teeny active tumors that chose that moment to pop up on my spine. Instead of the trial drug, they decided to try a traditional chemotherapy, normally given to people with lung cancer, because the troublesome metastases are in my lungs (which can’t be treated with radiotherapy. Radiotherapy requires being perfectly still, and lungs generally need to move or you’ve stopped breathing). The chemo did nothing, however, except greatly thinned my hair and made me nauseous.
So we changed tactics. A new clinical trial was in the works, but before I could get in it, we needed to halt the progress of the growing tumors on my spine. In January 2014, I had intense radiation to my lower thoracic spine. Then, in April 2014, after much debating about how to go about it (because of prior treatments to a nearby site from years ago), I had more intense radiation to my cervical spine. Those treatments seemed to work with great success, though it left me with “defects” as they called it. Mainly I have what seems to be permanent tingling and decreased proper sensations in my right hand/arm. I say “seems” because some days it also seems to improve. They tell me this implies it’s directly related to inflammation caused by the radiation, but no one seems to know when that inflammation will recede. I am on a steroid regimen to combat it, as my adrenals aren’t creating the right hormone on their own to do it at this time. Attempts to take me off this regimen have resulted in extreme back pain, loss of motor functions in my hands, and at its worst, inability to walk without support.
Much of 2014 has held my focus tightly upon managing this pain and other defects. But it has also been the year I finally started a clinical trial, and one that appears to be working. I began taking Regorafenib in early May 2014, at the highest dosage recommended, and though at times I didn’t think I could continue due to the side effects, I persevered and gradually, those side effects grew more tolerable or just faded away. Sort of like my hair. *grins* *tucks remaining thin strands back under hat*
As of this writing, I have just started my 9th cycle of the treatment. My scans have consistently showed the lung mets as either stable or shrinking, albeit slowly. The doctors are also excited that many of the lesions that remain on my spine are also showing the same behavior, including ones that were not treated with radiation. For some time during the past year, I was ready to give up. Or if not ready, at least pondered what that scenario would be like. I had some dark days and nights.
Through all of this, I’ve continued to work full time in my administrative job. I have worked remotely (i.e. from home) either partially or completely since we found out my cancer had come back and that it was going to be a long painful process to get it under control. When I’d proposed to my employer that I should continue to work for them even from another state, I was taking a big chance that they’d refuse. But it’s been almost 2 years now and so far I haven’t heard any complaints (even if I do suspect the occasional resentment from co-workers). I am always reminded how blessed I am. To have to leave my job now would be financial ruin unless someone local was willing to hire me, knowing that I absolutely will be taking sick days often for doctor appointments or even because I simply can’t find the energy to leave the house that day. Chemotherapy, for many, is exhausting. Your body is working very hard, even if it doesn’t look like it.
The other big event of the year was our move into a house. My husband and I stayed with his parents at first when we got to Pennsylvania, but quickly realized we needed to find our own home. His parents are wonderful people, but their house is not big enough to accommodate 4 adults for longer than a weekend. Between varying work schedules, surprise home improvement projects (e.g. Suddenly broken shower in the master bath meant we were all trying to use one bathroom), and even major differences in dietary needs led to too many conflicts to maintain a healthy relationship between everyone. When a tiny efficiency apartment opened in the building my in-laws own, we moved into that for the time being until something else came along. Meanwhile, my husband secured full time work and got himself established there before we started home hunting in earnest. So when a great little house turned up in a casual search one weekend, we were ready and looked like great candidates. Great enough that the owners were excited to have us, since this was their first time being landlords. The home is very small, but affordable and gorgeous, and on a large enough lot to be far from the neighbors. We were even encouraged to dig a garden if we wanted to do so. A perfect match.
And so here it is, another New Year. There are dozens of dark-eyed juncos, several cardinals and even a huge woodpecker pecking at the seed that I’d sprinkled about in the snow and on the feeder outside my living room window, while I sip tea and listen to the whir of the auger in our pellet stove that keeps the whole house toasty warm. I’m thankful for that stove, because it has been a very cold week, after the very mild December we just had. And I’m thankful for the birds, for this house, for modern medicine, for generous in-laws, for gracious employers, for cold winters and beautiful places to live.