Wednesday, 23 March 2016.
So it has been almost a month of being off of all chemo meds. It has been a bit of a roller coaster emotionally. Not a crazy roller coaster, but small ups and downs. The first couple of weeks I was amazed at how quickly my body seemed to be bouncing back from not taking the nightly doses of mercap (short for mercaptopurine). I noticed an almost immediate improvement in my energy level and ability to wake up at an acceptable time. I’m sure most of you know that I have never been a morning person but with lots of meds on board and a dose of Ativan to help me sleep and decrease my anxiety, mornings were nearly impossible for me.
I have found it pretty encouraging that I have been able to wake up more on schedule with the rest of the world. The downside is that on the days I still sleep late and don’t have much energy or motivation I am a bit hard on myself and feel guilty and useless for not having done more. Intellectually I know that I have to be patient with myself and that things aren’t going to change overnight, but emotionally I am so tired of not being a normal 29 year old. It’s a tough lesson to learn but ‘normal’ is so subjective and I need to keep reminding myself to be happy and thankful for all of the small victories. A year ago I would have killed to be where I’m at right now, so I need to remember where I’ve been.
One of my doctors once told me to think about it like climbing a very tall mountain; envision there is a fog all around you so you can’t see the top of the mountain and you can’t see down below either. Focus on putting one foot in front of the other and eventually you will be at the top. It was a great visualization for me because I knew the journey was long, but thinking about one day at a time versus the whole long course of treatment made everything easier to swallow. So I guess I still need to think about my journey this way.
Now that treatment is over, I do have the sensation that I am re-entering society. In many ways I have been in a bubble for the past two years and three months. I am trying to rediscover my sense of style again. I am finally feeling happy about the length of my hair, to me it looks less like it’s trying to grow in and more like a hair-style, which makes me so happy. I really need to get back into shape – which is another issue that I know isn’t going to resolve overnight, but it’s hard not to daydream about my old body. Less daydreaming more exercising 😉
One of the most frustrating things I feel that I’m facing right now is having no idea what to expect day to day. I really do wish there was a roadmap for post chemotherapy patients, but every patient’s body and treatment is different so I guess it really is just a wait and see kind of game. Just like when I was diagnosed, I wanted answers – why and how and when. There were no guarantees for a cure then and now there are no guarantees that I am going to go back to the old me. What I’m trying to control is having a positive attitude and trusting my body to do its thing. It’s gotten me this far and has stayed strong through some hefty treatments so I feel like I need to have some faith in it. But I still find it frustrating.
Another issue for me is side-effects from chemo. I have pretty bad neuropathy in my hands and feet. It’s a hard sensation to explain, but it is sort of like a burning, numb feeling. My feet really don’t bother me that much but my hands drive me nuts. When I was in-patient during the highest doses of chemo it got so bad in my hands that I could barely write. Luckily it is not nearly that bad anymore but it still impacts me every day. The worst time of day is in the morning, I usually wake up feeling like I’ve been clenching my fists all night. This is a side-effect that should go away once the chemo works its way out of my system (which should take about six months) so we’ll see. Something that I’ve recently read great things about is Turmeric – that it can help all sorts of problems in addition to pain/neuropathy.
A minor but still annoying side-effect is scalp pain. Before I was sick I used to have the same kind of scalp sensitivity if I had my hair up in a tight ponytail all day. I would let my hair down at the end of the day and it would feel sensitive and sore. Now it seems to be all the time. I kind of think it’s because the hair follicles aren’t used to the increased heaviness of my hair but really I have nothing to actually back that up. A friend of mine who is seven years out from Lymphoma said she had this scalp pain as well and that it went away, so fingers crossed 🙂
It is my hope that this blog will spread awareness about blood cancers and cancer in general and that it will be a way of connecting with other survivors. I am proud to say that I am going to be on the Executive Committee for Light the Night which is a blood cancer walk sponsored by the Leukemia and Lymphoma Society. I have participated in Light The Night (LTN) for the past two years and I am thrilled to be getting involved on a deeper level. I have some great ideas for fundraising and am so excited to get going on the planning.
I hope all of you have a great rest of the week and a very blessed Easter weekend. Let’s keep the victims and families affected by the attack in Brussels in our prayers as well as everyone else around the world affected by terrorist attacks.