Monday, February 2, 2015

paradise, counting my blood cells & the up and downs of chemo round #3

The new photo friday theme is "Paradise" - it feels like the very counterpart where I am right now.

But it brought me back to this peaceful sunset moment from December: standing there, I knew that soon the sunny island time will be over, and that back home, chemotheraphy would be waiting, and that it will be a while until I feel so at ease.

Paradise right now would be: to feel healthy and without worry.

But then, even though the last weeks were a walk through unknown and partly difficult grounds, so far, chemotherapy isn't as devastating as I first feared and expected.

It’s a tough treatment of course, but they adjusted the chemo medication in the recent past, to more specific and balanced combinations which from start also include more medication against side effects. The days right after the treatment are the most difficult, like going through a flu, only without fever, but feeling worn-out, and your body signalling that something is wrong. Then my energy picks up again, and for a while I feel okay, some days are even light and good. Then the next round starts.

What is more difficult than the bodily up and down is the way the medication affects the mood and feeling – that it makes me feel hollow mentally for some days after treatment. That’s the hardest part, this feeling to be out of balance, in a blur.

In one of the yoga online courses / talks, the yoga teacher herself went through a difficult illness and describes it as “I had no confidence anymore”. When I heard it, I got tears in my eyes, as it really catches this troubled and empty feeling: even though you logically know that it’s just a phase, that in a couple of days, you will feel better and brighter, it’s like walking through a fog that you feel won’t lift again.

Added to that, the taste of food changes for a while, water tastes metallic or soapy, bread tastes dusty... the trick is to try and find something that tastes okay, and to follow the taste of the day: sometimes pumpkin soup works, sometimes vanilla ice, sometimes curry rice.

My hair has now fallen out completely. The photo above is from earlier this month, with the last few strands of hair still showing. Now I mostly wear woolen caps, they feel comfortable, and I feel okay going outside with them, too. (It's winter anyway, so at least that fits from season.) I also have a wig, and it's good to wear it a few hours each day, to remind myself how I look with hair, to feel a bit more whole again. Altogether, the hollow feeling is more difficult to deal with than the loss of hair. Even though it will be a while until my hair grows again to its former length, while the hollow feeling only lasts some days each round. I try to see it as experience, a taste of how depression maybe feels. Sometimes it still feels strange that all this is actually happening.

With chemo round 3, I now at least have more than half of the difficult chemo rounds completed - the first 4 chemos are with "heavy" medication, the following ones will be lighter, with less side effects, and they can be given weekly. The heavy ones need 3 weeks to recover from.

What really helps to keep me balanced is.. reading. As I won't be able to travel, and should avoid places where many people are (due to infection risks), my "trips" are basically of the reading kind - that's why I started to read around the world again, visiting all 7 continents. I started the reading tour in January, in China.

Parallel to the world books, I read memoirs of others who have faced health obstacles:

I read "Tuesdays with Morrie" again, the book about an old professor who makes the most of his time while his body is growing weaker, and who shares his insights with his former student. Their conversations are a compassionate reflection on living, and on what matters in life.

What touched me even more, though, is actor Portia de Rossi's autobiography: "Unbearable Lightness". Rossi was a model since she was a teenager, and later she also was an actriss, one of the lawyer's in Ally McBeal. She is a beautiful woman, but since her teens, she has struggled with her body and figure, and with eating disorders. It's painful to read how someone healthy and gorgeous brings herself to the point that her body is about to collapse, and only scarcely escapes long-term effects.

The third book I read is from German author Charlotte Link, whose sister was diagnosed with a difficult kind of cancer. The doctors gave her 1 year, but in she kept on living for 6 years, It's also a book about misdiagnosis, doctors who had not much empathy, and other difficulties that some face on top of the health obstacles. Reading it, it reminded me that it's the stories of things going wrong that are more dominant - even in our "chemo group", in the stories shared while waiting for the blood check, often those that are troubling get more recognition, simply because there is so much more to tell compared to "things went relatively okay". On the other hand, the books are a reminder how many are going through difficult times. And just walking up to the hospital keeps you aware that behind each of those windows, there is someone who isn't exactly in paradise.

Counting blood cells
And here are some more details about the chemo therapy, how it works, and the obstacles it includes: one key factor during chemo are the leukozyte blood cells, which go down after the heavy treatments. Low leukozyte count means low immune system, and higher risk of infection. The lowpoint with my chemo medication is about 10 days after the treatment, then the leukozytes start to rise again.

That cycle went well for me the first cycle, and now in this second cycle it looked good, too. I was in the rising phase already again, but then the count dropped. So I got an extra medication - an injection, to support the growth of leucozytes, and get them up to a point where chemo can happen (if the count is too low, the treatmen date would be postponed, as it's too risky to go into chemo with low leukozyte count already).

As to the injections: like with all of chemotherapy, every body responds differently. For some, it takes several injections until the effect kicks in. I was lucky: i just needed one injection, and it worked really well: my leukozyte count rose from 2300 to 8000, that's the level of before the first chemo round. I put a geeky diagram together, for myself to visualize the cycles and effects. The blue columns are the blood counts, the red ones are chemo dates. The next to last is the injection date, 26.1.:

The low leukozytes, it’s not unusual for this to happen, but I felt good in that week, and felt confident that my body is doing well, and that the cells are on a rise..  I think that's one of the irritating things about cancer and chemo altogether: that it’s difficult to figure out how you really are. You don't feel a tumor at first, it doesn't show in any blood tests. And during chemo, feeling good doesn’t mean that your immune system is actually in a good shape. Just like feeling nausea doesn’t mean that you have eaten something wrong, but is a side effect of the treatment.

Alltogether this means that you are a bit lost there on your own, not really knowing what is happening in your body, and how the next days will shape out. Added to that, most medication comes with side effects: the injection to support leukozyte growth makes your bones / joints ache, especially in the back. The docs suggested to take Ibuprofen for the pain right when I feel to start an ache, so that it doesn’t built up, so that’s what I did. That’s about the usual pattern of chemo treatment: this domino of treatment effects, medication to keep the body balanced or at least in some range, and additional medication to avoid / prevent side effects.

The leukozyte count and the strong injection result now also brought an adjustment of my treatment during my cycle: I will get another injection 6 days after chemo, so that the leukos won't slide down again. Which means, the next cycle will be on a higher immune level instead of a continuing lower slide. It’s good, and gave me back confidence after the frustrating news of the lower count, which first looked like it all might become more difficult.

So this is chemo: a cycle of ups and downs... and a long walk towards being healthy again.

Looking at the sunset photo now again, I think: one day I will stand there again, seeing that island sunset again. :)

Related links:

I now started to mark all blog posts about this shadow journey with a tag, you can click here to read them... C is for cancer, and for courage, too

More reading notes... 7 continents reading challenge + my bookshelf / reading notes

Paradise... at photo friday


grayestone said...

I love how you are staying positive, or at least engaged during this process. I also loved your geeky chart. Excellent:-)

Dorothee said...

glad you enjoyed the chart - it's fascinating, the way our bodies work and medications works - that's something i try to keep focused on, and yes, staying positive.

susan said...

D, you say it so well, what I've heard from nearly all my friends who have gone through it. It's a blur of good days, facing a few bad days, then the good days come again. Hang in there; the end result of the roller coaster ride you're on brings you to a place of good, good, then more good days with your feet firmly planted on the ground. Until, of course, you go even higher into the sky on a plane bound for that island!

Beth said...

Dorothee, I admire your courage and positivity so much, and even though there are low days, I know this attitude will carry you through. It also helps me to read your notes on the process for another reason: when my mom had cancer, she was unable to talk about her feelings very much, and so there was a lot I didn't know or understand. Even though it's many years later, I appreciate having this look at the process through your eyes, and it makes me less afraid for myself should something like this happen to me. xo

Dorothee said...

Susan, Beth - thanks for your reflections and thoughts and encouragement. and I am glad my writing also is helpful to understand the effects of chemo treatment, how the side effects feel.

Alida Thorpe said...

Dorothee, I came here from your entry on Photo Friday, to see some pretty images of paradise places. When I began to read your story, I couldn't stop. Thank you for sharing your experience of this all too common treatment. You make it less scary and more grounded to reality. Many people I know have gone through chemo and became stronger, happier people. Best of luck to you and thank you!