Chemotherapy side effects and invisible disability

I don’t feel like writing today. In fact, I’ve been planning my schedule so that I don’t need to write on the weekends at all (as I am writing this, it’s Saturday, January 13th). I’ve been trying my best to write one week ahead of schedule, but everything this week has been a struggle and so here I sit on Saturday completing work that should have been finished several days ago.

I have neuropathy in my hands. This is a common chemotherapy side effect that I, and I think probably most people, knew nothing about prior to being diagnosed with cancer. My fingertips, in particular, are numb and tingly and every time I push a key on my keyboard, it feels like they’re asleep. My hands themselves are also very weak — I have almost no grip strength and have trouble hanging on to most objects for any length of time. If I spend too much time typing or holding any objects, the muscles in my arms start to ache and I’m at risk of dropping what I’m holding.

This has diminished my quality of life considerably. I was hoping to indulge in a lot of my hobbies during my time away from work and that is impossible for me now. I can’t knit, I can’t do any crafts, and I can’t colour. Writing in my journals has also become difficult and I usually have to cut myself short because of the discomfort. I haven’t tried playing a lot of controller-based video games, but I am going to assume that I won’t be able to play them for long sessions as using my 3DS has been okay only in short bursts.

The neuropathy is also limiting where and how I can travel. Earlier this week I decided to go on an outing downtown to shop at a Japanese dollar store that sells Daiso products. I brought a takeaway coffee on the train with me and realized after one stop that I wouldn’t be able to hold on to the coffee for the whole trip downtown. I decided to get off the train and run another errand closer to home first, mostly so that I could throw the coffee away.

On my way home, I had another realization: what happens if I can’t get a seat on the train? If I can’t hang on to my coffee for more than a few minutes, how am I going to keep myself steady hanging onto a post while standing on the train? I had happened to sit in a seat reserved for the elderly and people with disabilities. At every station I nervously glanced around to see if anyone who would need my seat had entered the car. I didn’t know how I would manage if I had to give up my seat, but I also didn’t think I would be able to explain why I needed a seat so desperately. Right now, I look fine. My hair has been thinning a little bit, but not so much that anyone would notice and I have no other visual side effects. Everything that is wrong with me is completely invisible.

I won’t be taking public transit for now. In some respects this is probably for the best. During chemotherapy you are extremely vulnerable to infections and getting sick can delay your treatment significantly. We all know that public transit is a great place to catch a cold or the flu, so it’s probably a good idea to avoid it, but it’s shitty to feel like my treatment is limiting my life to this extent. My boyfriend and I had planned to go out for a fancy dinner downtown at a restaurant, where an old friend of mine is the executive chef, to celebrate my birthday when he’s next in town. Those plans are on hold indefinitely.

Unfortunately, I’m not sure if there’s anything that can be done about the neuropathy. I will be talking with my oncologist before my next treatment about lowering my dosage of the drug in my protocol that causes neuropathy (vinblastine), but I’m not sure how this may affect my treatment over the long term. I know that the neuropathy will likely go away within a few months of my completing treatment, but I am concerned that it may continue long after the fact, particularly since it seems to be quite severe for me.

I could say more, but to be honest, it’s painful for me to keep typing. Please keep in mind that my capacity to chat online and respond to comments is diminished at the moment. I’m trying to keep up with things as best I can and I appreciate your patience!


Cancer Update: Prognosis Improved!

Yesterday I finally received some good news!

I received the results of my bone marrow biopsy and it looks like the cancer has not spread to my bone marrow.  This is incredibly good news as it reduces me down to Stage III from Stage IV.  At first, the doctor (a locum, because my regular oncologist is away on vacation) told me that I am still Stage IV, but we read through the staging criteria for Hodgkin’s Lymphoma together and, so long as the cancer hasn’t spread to another system of my body, I am actually at Stage III.

This means so much for my prognosis.  Base 5-year survival rates for Hodgkin’s Lymphoma are 65% at Stage IV and 80% at Stage III which, in my opinion, is a huge difference.  If you add in the fact that I wasn’t having any symptoms of Lymphoma (drenching night sweats, unexplained fever or weight loss) prior to my diagnosis, this means that my chances of making it through this ordeal are quite good.

When I heard the doctor mention that the cancer may have spread to my bone marrow, I instantly lost a great deal of hope and morale.  She also discussed the fact that, if the chemotherapy wasn’t effective in eradicating the cancer, there were other options.  I have been dreading those other options.  I have been dreading the fact that I might need further treatment after chemotherapy.  While I know that it is still highly possible that I will need further treatment after chemotherapy is completed, I feel like I can at least be a little more optimistic about the fact that the chemo alone might be enough.  I can’t express in words how much that means to me and the positive effect that it has had on my morale. I spent a few hours this afternoon crying.  I was completely overcome with emotion.

Today I’m going for my second chemotherapy infusion (I should actually be on my way home by the time this post goes up).  Of course I’m dreading it, but I’m happy that I will, at least, be going in with a little more hope than I did last time.

I will probably be pretty quiet for a few days, but I’ve written and scheduled my next three posts, so please watch out for them.