Saturday, March 14, 2015

from mountains to next chemo, or: first short trip, me with a wig, 2 reads, and a friday scare

This week brought the first short trip since I got ill, a mix of winter and spring, my first official wig photo, some good reads, and the next phase of chemo, which started with some worries and the fear of an infection:

Last weekend brought the first real spring weekend of the year: sunny and with milder temperatures. We had hoped for good weather, as we had planned a short trip: not far, nothing big, but some time at Lake Titisee, surrounded by mountains, to celebrate my milestone of completing the first phase chemo in February with a long weekend in another place.

It's about a 2 hour scenic drive from here to Titisee, which is in the Black Forest. We hadn’t expected to see the Alps, but while driving towards the Black Forest, and following the sign to a petrol station, they suddenly appeared at the horizon for a minute. Really, they should have put “Kodak moment” on that sign, as the Alps are only visible if you leave the normal route. Such a sight.

Half an hour later, we arrived at Titisee. It's a place we've been to once before, in September, here is a photo from back then:

And this is how the lake looked now, in March - Titisee is higher in altitude, so there still was snow there, and the lake was still frozen. Together with the spring sun, it was a beautiful atmosphere of seasons in motion.

We found a lovely hotel right at the sea – below is a photo with a view from our room. Being there, it was just about enjoying the view, walking along the lake, relaxing. And exploring the hotel and the things it offered: they had an indoor-pool with seaview, and a spa - and when we walked into it there was no one there. “let’s go swimming”, we said. It was like a gift: I couldn't have gone there if there were others around due to the risk of infection. But being there alone, that was perfect. And just as we were swimming, the skies moved to sunset colors. So nice.

While there at Titisee, I felt good and healthy, and the cancer-and-treatment related thoughts and worries were almost gone. It’s always surprising, the difference a change of place makes, how the themes that just squared your mind are fading while you are driving, together with the usual rhythm of days. 

Being there was also about figuring out how to get some holiday-time even though we won't be able to plan ahead or take a longer break. And so this might be an alternative for the next months: going to places on short notice, to get some fresh air, drive along roads, go for a walk, and enjoy the region here. 

Lake Reading: Siddharta + Love at the Speed of Email
I brought two e-books along. One is a classic read: Hermann Hesse's "Siddharta", which I read years ago. It's a special book, written in 1920, about the long road of self discovery. Siddharta grows up as the son of a Brahman, and then moves through very different lives, sometimes losing his focus, but always returning to the search, and to his reflections on the world and on living.

The other book is "Love at the Speed of Email" by Lisa McKay, which is a world book, too, the memoir of an aid worker who lives in Los Angeles and travels the world to give workshops for humanitarian aid groups. Through her essays, she meets an aid worker, and they start a mail dialogue, and finally decide to meet. In the book, she also quotes her own essays and mails, and the ones from others, which give an idea of how life as an aid worker feels, and the hopes and troubles and questions you are faced with: from practical considerations to life questions. Such a good, huge read. For some of her recent essays, visit her author website: Lisa McKay- Humanitarian Work 

It was so good, to have this lake time, to relax and explore and read. And feel a bit more connected and part of the world again. 

I feel rather comfortable with the wig now, and can wear it all day without noticing it much or at all. At the start, it felt irritating after two or three hours. Then one of the fellow patients had a good advice: "Try to wear it a whole day, to get used to it." And it worked. Here's a photo of me with my wig:

From Titisee to the next phase of chemo

What really was sad, though: getting back from this lake time,  to step back to the usual week. I didn’t want this long weekend to end. Being away, feeling good and free, it brings the contrast out even more, knowing that back home, the next chemo phase was waiting, and with it, some worries:

The next chemo phase is be based on Paclitaxel. It's supposed to be easier to take, but also has some side effects, like numbness in feet and other symptoms - well, they all have side effects. And of course, only time will show how your body will deal with it, and to which degree you are affected.

The chemo cycle started this Friday, and then will be weekly, 12 sessions altogether. Wednesday brought the blood check for the first session. My leukozyte count was at 4300, which was good. But the day then turned a bit blue, feeling the afterglow of the journey, and thinking about the next string of chemo treatments, not knowing how my body will react to it. and feeling healthy right now, and good, and tired about having that taken away from me again and again.

Wednesday and Thursday were mostly about catching up work-wise (I still can work freelance, which feels good) Then Friday arrived, and turned more difficult than expected: I felt okay while driving to the oncology centre. Like all chemo treatments, the day there starts with a check of blood pressure and temperature, which felt like routine so far. But this time, my temperature was 37.6°C. normally it’s 36.8°C or below. I didn’t feel like I was developing a fever, but of course after that result, they were worried that the higher-than-normal temperature is a first sign of infection, and made a blood check.

So while the others could start their chemo, I was waiting for the blood check results, and worried that I have caught a cold, or even worse, the flu that is still moving through the region. The blood check took a while… they phoned the lab, and said: “It’s just one result missing, but that’s the crucial one. It will be there in about 20 minutes”. So I went for a walk, to get some fresh air and calm down: walking helps. Back in the oncology centre, the result finally arrived: the blood check looked okay. no signs for infection.

The doc showed me the chart they have, and as I am a geek and mentioned that things like that fascinate me, they printed it for me. The last row is from chemo day, and the final figure (marked yellow) is the extra result they waited for, the marker that shows if you develop an infection.

I learned that the name of the marker is CRP: "C-reactive protein". It’s the first marker to rise after infection, a signal marker for the immune system and kicks in other processes. Here’s more: wiki: C-Reactive protein.

With the result, everyone was relieved, me, the docs, and the others, too. We were 5 patients in the room, and the others worried with me, and about the situation, too: the worst case would be that I had an early-stage flu infection, which would mean I was contagious without knowing yet, while sitting in the oncology centre..

The chemo itself went well. Again, the IV-infusion starts with medication for (or rather: against) side-effects. You see them in the photo, they are the smaller packages. One of them is Fenistil, which makes you sleepy and a little cold. Then the real chemo infusion started (it's the one on the left, with the blue cap). The biggest package is simply saline, to rinse and to hydrate. I was finished by about 2 o’clock, and my partner picked me up.

The good news is that with Paclitaxel, I didn’t get nausea so far. I had a snack at home, then we went for a walk. Then a bit at the desk, and then I got tired, and took a nap that turned into a 3-hour nap. It was good, I felt refreshed after that at 10 o’clock… and then had dinner, and watched some tv: Mrs. Doubtfire was on in TV. It was just the right thing to watch, even though the film now is shadowed with the sad live story of the humorous Robin William. Later I read a bit again, the next chapter of Siddharta, who lives at the river now, and listens to the flow of the water, to the wisdom the voices of nature.

It's good that it is the weekend now, with time to go slow, and to reflect on the week, and on the emotions it brought. Also, I want to end this blog post with a lake / journey photo:


more about it all, here in the previous posts: c is for cancer, and for courage, too


mechaieh said...

So sorry to hear about your illness. Sending best wishes from Tennessee.

Dorothee said...

Thanks for your wishes from across the Atlantic.

Jen Knox said...

When you say, "It’s always surprising, the difference a change of place makes, how the themes that just squared your mind are fading while you are driving, together with the usual rhythm of days." I felt a reprieve. Just imagining myself somewhere else is gratifying in this way sometimes. Thank you for these beautiful images and for sharing your journey as you do. Wishing you health and wellness, and staying with you from afar on this virtual ride.

Geetali said...

You have always been an amazing person. Your perspective is courageous, it is wise and wonderful, Do.

Linda said...

Glad you had a lovely visit to Titisee. Sounds like you deserved a nice break. Take care!

Laurie Kolp said...

I wanted you to know I'm praying for you... and the wig looks good!

Dorothee said...

BIG THANKS for all your thoughts and prayers. It helps to know and feel that I am not alone while walking through this time of illness.

pattisjarrett said...

So happy you were able to have a weekend getaway. It's hard to come home from a mini vacation any time, but I imagine especially so when one faces once again things that were left behind. You look great in the wig, glad it got more comfortable for you to wear it.