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!

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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.

 

Chemotherapy is terrifying

Everything is moving so quickly now that it’s been tough for me to keep up.  Lots of appointments and procedures to prepare for my cancer treatment endgame: chemotherapy.  For the next six months, I will be receiving two (2) chemo infusions per month, for a total of twelve (12) infusions.  The hope is that this will completely cure my cancer; however, given that I’m stage IV, there’s a chance that I will need further treatment once my chemotherapy is completed, such as a bone marrow or stem cell transplant.  I’m trying not to think too much about the other treatments for now as I feel it’s better to focus on the task at hand (though I am mentally preparing myself for the fact that I may need further treatment).

Yesterday I had surgery to install a port, which is a permanent IV — a central line to administer chemotherapy and other drugs.  While I am pretty sore today and finding it a little difficult to move, I am overjoyed to have a port.  Prior to my surgery yesterday, it took three (3) nurses and six (6) attempts to start my IV for the procedure.  The pain of being poked repeatedly doesn’t bother me too much, but it causes a great deal of anxiety and stress — things I don’t need more of at the moment.  Not to mention the fact that one of the drugs in my chemo protocol (decarbazine) burns your veins if delivered though a standard IV.  Yes, please, I would prefer to avoid that.

My first chemotherapy treatment is tomorrow and I’d say I’ve prepared as much as I can.  I’ve picked up my anti-nausea medications and the other drugs I need to take at home.  I have also prepared the items that I plan to take with me to the hospital tomorrow for entertainment (it takes a few hours to administer all of the drugs).  Of course, I’ve prepared several options since I’m not sure how I’ll be feeling as the drugs are dripping.

Physically, I’m completely prepared.  Emotionally, I’m a mess.  I’m terrified.

My main fear is my hair.  The standard chemo protocol for Hodgkin’s Lymphoma (the drug combination is called ABVD) causes hair loss.  Some folks who have strong hair only experience some thinning, but my hair is quite fine, so I expect that I will lose it all.  When I first found out I had cancer, I didn’t think that hair loss would bother me.  I knew I wasn’t going back to work until my treatment was completed and, not being a particularly social person, I figured I wouldn’t be going out very much.  My partner has also been completely supportive and isn’t worried about it, so I didn’t feel like I needed to worry about it either.

And then my mother went to have a hair cut and our stylist mentioned to her that I should cut my hair short before I start chemo.  In her experience, many women have an easier time coping with hair loss from chemo if their hair is shorter beforehand.  This got me thinking a lot more about the repercussions of hair loss and it started to hit me a lot harder.  What happens when I want to go out for a nice dinner with my boyfriend?  Do I wear one of the toques I’ve knitted for myself?  I will definitely get a wig, but I still feel like this loss will be difficult for me to accept once it starts happening, especially if I can’t find a wig that breathes well and doesn’t bother my sensitive skin.

The rest of my fear is more general.  I’m worried about what chemo will do to my sensitive skin, my nails.  I’m worried about nausea and the possibility that I might have a metallic taste in my mouth all the time.  And I’m worried about cognitive dysfunction.  I plan to spend a great deal of time writing during the next six months and I don’t want those plans to be negatively impacted by chemo brain.

I’ve read accounts written by survivors and, while it’s helpful to learn about the experiences of others, everyone is different and everyone reacts to chemotherapy differently: some folks have a more difficult time than others.  I guess I’ll start finding out tomorrow.

 

The results are in

I had intended to make this post a little sooner, but I needed some time to process a lot of the information I received at my last oncology appointment.  Once I was ready to start writing again, a bad cold and some awful emotional stress got in the way.  Needless to say, I have a lot of topics already lined up for future entries.

My official diagnosis is Stage IV Hodgkin’s Lymphoma.

Stage IV is what you generally don’t want to hear.  It means that the cancer has spread to another system of the body.  In my case, it has spread to my bone marrow.

Despite all that, my oncologist is still optimistic about my case and believes that my prognosis is good, particularly due to my age and the fact that am still able to accomplish ordinary tasks.  I also have not had any real symptoms of lymphoma at all, though I have been having night sweats the past few days, which is a common B symptom of Hodgkin’s.

Even with a good prognosis; however, this is horribly scary and everything seems to be moving too slowly again.  I need to have two procedures prior to starting chemotherapy: a bone marrow biopsy and a portacath installation.  The bone marrow biopsy is tomorrow morning and will establish a baseline for what my bone marrow looks like prior to chemotherapy, in case they need that information for further testing down the road. My portacath installation is December 20th.  A portacath is basically a permanent IV — a button is inserted under the skin in your chest so that an IV line can easily be inserted whenever necessary.  I’m grateful to have one installed, since I’m a difficult person to start IVs on, but I believe that the date will delay the start of my treatment until after the holidays.

I have seen posts by survivors in online cancer forums saying that many have had their first treatment on the same day they had their ports installed, but I’m not sure if that will be the case for me.  I have mixed feelings about this. I’m not thrilled at the prospect of being chemo-fucked at Christmas dinner (and honestly chemo scares the shit out of me), but I also don’t want the cancer to spread more than it already has.

The only things I’m really sure of right now are that I’m scared shitless and my life is never going to be the same after this.