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.

 

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.

 

The Waiting Game Part 1

Two weeks ago today, the leader of my medical team at the hospital told me that my lymph node biopsy showed a positive result for Hodgkin’s Lymphoma.  For the two weeks prior to that, I was on a roller coaster of blood-work, biopsies and other tests that provided a great deal contradictory information.

Basically, I contacted a virus.  The virus was similar to one several people in my social circle have recently had: flu-like symptoms (inconsistent fever and chills, night sweats, fatigue) and swelling of the lymph nodes in the face, similar to the mumps.  Viruses can be quite tricky and most are impossible to diagnose unless they’re common, major viruses.  During the process of trying to pinpoint a diagnosis, my medical team tried out a lot of different treatments and tests and, as a result, they stumbled upon the fact that I also have cancer.

Daily blood tests provided very little information other than indicating elevated stress levels and low electrolyte levels.  I had been so sick before entering the hospital that I had had a lot of trouble eating.  My stomach felt off and just felt terrible in general.  I think there was actually a test done specifically to see if I had lymphoma cells in my system.  As far as I know, the results of this test were inconclusive, which is quite common.

In order to rule out a bacterial infection, I was given intravenous antibiotics, to which I had an awful allergic reaction.  I had a red, spotty rash that covered my whole body (except for my armpits and the bottoms of my feet).  Personally, this was a bit of a nightmare because I was pretty scary to look at and, after the second dose of the antibiotics on my second day in the hospital, the rash started to burn and itch. I had to use steroid-based creams on my whole body and was basically doped up with antihistamines for a few days after.  They took biopsies of my skin to analyze the rash. The results were non-specific.

Of all the tests that my medical team conducted while I was in the hospital the only results that were useful were my second CT scan.  My first CT scan was only performed on my face.  Due to the virus, the lymph nodes in my face were so swollen that it was difficult for me to speak, particularly on the right side.  The doctors were concerned that it could be an infected abscess and so they wanted a scan of my face.  On my second day in the hospital, I was given a second CT scan of my whole upper body in order to determine whether the lymph nodes in my lungs, and other areas that are not immediately visible, were also inflamed.

They were.

After those results were analyzed, my medical team told me that they were 90% certain that I had lymphoma.  Subsequent to that a power struggle seems to have developed between several different specialty teams regarding performing a lymph node biopsy.  Some wanted to take samples, some wanted a full excision (taking out a whole node) and I spent 5 more days in the hospital waiting around for all the doctors to figure their shit out.

Meanwhile, the swelling in my lymph nodes (the obvious ones anyway) decreased significantly, because I was recovering from the virus.  This complicated the biopsy issue, because the surgical team wanted to excise one of the nodes in my groin which had been prominently swollen.  A few days after my examination by the surgeon, however, those nodes drained and returned to their normal size.

All of the doctors started murmuring that maybe it wasn’t lymphoma.

They did the biopsy on my 7th day in the hospital.  They took samples using an ultrasound machine from one of the nodes in my left armpit.  After the procedure was over, I was discharged from the hospital.

Several days later, I had a follow-up, outpatient appointment to go over some of my test results.  My biopsy was inconclusive.  I was told to come back several days later to review some of my other test results.  With very little fanfare or sympathy, the leader of my internal medical team informed me that, after further testing, my lymph node biopsy was positive for Hodgkin’s Lymphoma.

Up until that point, I felt like I had been doing a lot of waiting, but it’s nothing compared to what I’m dealing with now.  I had always believed that the cancer diagnosis process was simple: have some scans, ultrasounds and MRIs, find a tumor or mass, then start treatment.  Turns out, it’s a lot more complicated than that and I’ll get in to it later this week.