A Disappointing Workshop

Last week I attended a Look Good, Feel Better (LGFB) workshop at the BC Cancer Agency’s Fraser Valley centre (at Surrey Memorial Hospital). During our initial teaching session, the chemotherapy pharmacist at the hospital where I am having treatment mentioned to me that I should check out the LGFB program because she had found that many female patients had found it helpful. Based on a cursory look at the LGFB website, I immediately decided to register for one of their workshops, because it looked to me like it would be a session about self confidence and self care.

Rather than a presentation and discussion about how to look after ourselves physically during cancer treatment, we received a makeup and skincare lesson that just gave all the normal steps for putting on a full face of makeup: cleanse, tone, moisturize, the whole deal. The presenter read from cards that were provided by the LGFB organization and didn’t provide much further information. A few tips were given here and there, but for the most part, it was all just read from a presentation packet. There was a short discussion about wig options and care toward the end, but I would say it was only about 25% of the presentation. The most useful information for me came from other participants who had experience with wearing wigs.

I want it to make it clear that I’m not lashing out at the use of makeup. I think makeup is great and I admire those who are skilled at using it, but it’s never been my thing. I have painfully reactive skin and have to be very careful with what I put on my face. I have psoriasis, rosacea, and keratosis pilaris. I told my dermatologist awhile back that I used coconut oil as my body moisturizer and also that I was trying to go cruelty free with my beauty products and he scowled at me and gave me a list of suggested products that were basically all just Cetaphil and CeraVe. Whenever beauty YouTubers I watch talk about how gentle products are and how great they are at calming their skin, I try them and they literally burn my face. I can’t use any scented products because chances are they will aggravate my psoriasis or give me a huge rash.

Basically, I struggle with my skin. When I try new products, I try them one at a time so that I know which product is causing me to flare up. During the workshop, we were given a donated kit of products (which is huge and probably has about $300 worth of free products in it) and we were expected to do the skincare and makeup steps as the presenter read the LGFB instructions.

When I explained that I wouldn’t be able to use the products due to my skin issues, the presenter seemed quite frustrated. When other members of the group decided to forego a step or two here and there, she also seemed quite frustrated. I’m not sure why the presenter was so prickly about us not following along exactly as she expected but our group seemed to listen actively and attentively. I probably should have mentioned that the neuropathy in my hands has had such a negative effect on my manual dexterity that I couldn’t do a full face of makeup now if I tried, but I was having a rough day with it and didn’t feel comfortable disclosing this to the whole group.

The free products were an extremely kind gesture and I did get a lot of high quality skincare loot for free. Each kit contained the products necessary to do a full four-step skincare routine and a full face of makeup. The products were a good mix of drugstore and department store brands, such as Clinique, Vichy, MAC and Cover Girl. I have tried out a few of the products at home and I’m happy to have some of them, especially since I don’t have any money coming in at the moment. Not having to buy new cleanser and serum for a time will be a huge help to my already tight budget.

I guess the best way to frame my disappointment in the workshop, other than the fact that I thought the presenter was unnecessarily prickly, was that the only solution offered to the shittiness of cancer treatment was makeup. It just felt a little superficial and outdated to me. The presenter often used the phrase “feel like yourself again” but I would argue that women undergoing cancer treatment don’t need to feel like ourselves again, we need to get to know or learn how to cope with our new self. Or really, several new selves: the self of chemotherapy, of radiation and of survivorship. Sure, I might get a wig to help me feel more confident and comfortable in public, but what I really need is some tips on how to deal with looking at myself in the mirror and seeing a bald head.

This could all be a bit much to expect, but I think that LGFB could do a little better. Maybe I was stuck with a presenter that wasn’t great, but I think maybe starting with a knowledgeable discussion about the realities of how cancer changes the way you look over reading basic makeup steps from a booklet might be a better way to go.


Chemotherapy and hair loss

When I was first diagnosed with cancer at the end of last year, I didn’t think that hair loss would be much of a problem for me.  I’d make some hats, get a wig and everything would be fine.  I was wrong.  It’s fucking awful.

I should probably start by saying that not all chemotherapy protocols cause hair loss.  Loads of folks are able to go through chemotherapy with their hair fully intact, but based on my experience so far, most people have at least some hair thinning.  This is essentially the result of how chemotherapy drugs attack cells.  Cancer cells multiply and grow quickly, much faster than normal cells which is what makes them so dangerous — they begin to take over healthy, normal tissue in your body.  Chemotherapy drugs, then, are designed to kill the cells in your body with the fastest growth rates.  Of the normal cells in your body, your hair and nail cells are the ones that grow the fastest, thus chemotherapy tends to cause problems with your nails and hair.

As I write this, it’s January 28th.  I had to shave my head today.

I cried the whole time and so did my mother.  I cut my hair short in December and it hasn’t grown much since then.  She cut the excess with scissors and then used clippers to shave the rest.  When I looked at myself in the mirror, I cried harder.  I suppose I should be grateful — the shape of my head isn’t terrible or weird, but it will take me some time to get used to it.

I had originally thought that my hair might just thin significantly, because it didn’t fall out very quickly.  When I wanted to learn about ABVD chemotherapy, I read a lot of blogs and forum posts, thinking that it would be useful to me to read personal experiences.  Most folks said that their hair fell out in clumps.  Mine just fell out in wisps, a few hairs here and there.  I thought my hair was looking quite good until I went to a workshop at the BC Cancer agency last week, which I’ve started writing about for Friday’s blog.  I saw my hair at a few different angles and realized that if my hair was mussed up or disturbed at all, you could see bald patches.

I figured that would be the best time to give in and let my hair go and so I bought clippers and my mum and I took care of it this morning.  I think the toughest part for me will be getting used to having to wear something on my head.  I’m definitely not comfortable enough with how I look to go out without wearing something, but I feel awkward and strange and too warm whenever I wear a hat.  I was planning on making some chemo caps using old t-shirts, but the fabric my t-shirts are made of is a little too stretchy.  I think a trip to the thrift store is in order — we’ll see how that works out.

Tomorrow I will make an appointment for a wig consultation.  I know that it will take some time to get used to a wig, but hopefully it will give me the confidence to go out and be comfortable with myself.  I’ll probably write a bit about the process of choosing the wig and my experience wearing one in a few weeks.  Hopefully by then I’ll be able to look at myself in the mirror without recoiling.

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.