Sunday, February 22, 2015

the year of the sheep, chemo milestone, an art moment, healing and reading, & maybe a short trip



This week brought a new year, a museum hour, plans for a short trip, and a chemo milestone for me. And some mixed emotions. Here's a reflection of the week, and how things are going since they changed:

The Ups and Downs of Healing 
Wednesday started on a low, knowing that the next round of chemo is just 2 days away, and that I am not even half way through with all. Also, my body felt overly sensitive, I could feel each spot that was part of some medical interference during the treatments so far - from the original operation scar, to the chemo port device, even the regular injection point for blood samples.

But then, that also could be a good sign, I realized - my immune system is back to a higher level now, and so the sensitivity might also translate to healing. Here's a timeline of wound healing:


And here's the link to the wiki article: Wound healing. Looking at it, it’s like a project flowchart. It’s amazing, all the things our body can do, without manual.

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Chinese New Year and an art moment
Then came Thursday, and the New Chinese Year: The Year of the Sheep. I googled the term and had to smile at the news that came up: “But while it is farewell to the Year of the Horse, confusion abounds as to whether the coming year is dedicated to the sheep, ram, or goat. BBC News explains.” Here is the link to the seriously humorous article with video: BBC / Year of the Sheep And here is a more yoga/mindful article, with suggestions. The first sdvice includes: “Approach everything with kindness”. Here’s the link: 8 Ways To Make The Most Of The Year Of The Sheep

Thursday also brought a change of mood: the day was sunny and felt inviting. I had a casual meeting in the Stuttgart office, catching up on projects, and I felt like being out there - so I drove there earlier to visit the “Staatsgalerie” museum on the way. And it was lovely. Just walking up to the museum is special, with its very unusual architecture - see photo above.

They have some amazing works there, sorted in a timeline from old epoches to impressionists and on to modern art. So you can walk from Monet to Picasso, from Renoir to Paul Klee, from Ellsworth Kelly to Donald Judd, from painting to sculpture, from old to new..

No photos allowed, but here's a photo from a catalogue that shows one of the rooms, and a sculpture that felt like a zen labyrinth - a symbol of the walks we take, the places we see art, and how all those visits connect in growing circles: Monet's water lilies in Paris, Donald Judd's squares in Düsseldorf, modern art in the Tate in London...



It was so good, and being there, between those art works and memories they brought - all those colors and themes, I was just happy. Really, it was one of the happiest moments of the week.

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Treatment Overview..
Then Friday arrived, and with it the next chemo. It's the fourth one, and the last of the tough ones. They will change medication now, and the next rounds should be easier (that's at least how it is for most patients). Instead of thinking of it as a long, winding, draining road, I tried to turn the thought around and see it as a milestone that I reached. 

Looking backwards and forward in time, this is where I am right now in the treatment:
  • 10. October: realized I had a knot in the breast, doctor dates and checks, biopsy etc. 
  • 28.-31. October: in hospital for operation
  • November: healing time & island time (still glad for that)
  • December: chemo preparation, port operation, first chemo (19.12.)
  • 19. December - 20. Februar: chemo sessions #1-#4: these are the "tough" ones, with 2 different active agents: Epiburicin + Cyclophosphamid, in 3-week intervals so that the immune system / leukozyte level can get back into shape after each session
So this is where I am right now, and what I completed. And this is what is upcoming next, when things work out without complications:
  • middle of March - end of May: chemo sessions #5 - #16 (the "lighter ones" with one active agent: Paclitaxel), which can be given in 1-week intervals
  • and then... radiation. starting end of June, probably 5-6 weeks with daily radiation (5/week)
  • and then ...rehab (3 weeks) in August 
I usually try to focus on just the next days and steps, as otherwise it gets overwhelming to look at the immensity of it. Altogether, it's almost 10 months of diagnosis / operation / different treatments / and finally rehab to heal and recover from the time of treatments. But it's good to look at the larger picture every now and then, which now lead to this different thought:

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Maybe a short trip? 
Looking at the larger scale, and remembering the island and the positive energy it brought now brought the idea to try and see if its possible to include some short trips in this schedule - I talked with my docs, and a good option would be start of March. They suggested to rather take the car, not the plane, and go somewhere not too far, so that in case of any complications / fever, I could be back home for a check-up in a couple of hours.

So we could go somewhere in this region for 2-3 days, maybe Lake Constance or the Black Forest - just to have some time to breeze and be in another place would be good. Drive along roads, see something new. Get nice breakfast and dinner.. will see if this works out. It also depends on the weather, and not getting a cold or a flu. But it's good to explore places and hotel pages - even if it won't work out this time, there is now this idea of going, and places bookmarked, to look forward to.
I guess it also will be good to have those moments of "being out there", be it a museum visit, an afternoon of driving through the countryside, or a short trip.

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Chemo #4 + sun
Somehow the theme of places even was part of the actual chemo seesion - it was 7 of us in the chemo room this time, and we know each other now more and more, from the blood check dates. We had some good talks during chemo – one of us is going to “Kur” (rehab) next week, for a pause and to recover. It’s the second time of going through treatments for her, her cancer has come back, so she is experienced, and still humorous. We were all curious for what happens in rehab, and it was interesting to get an idea of how it works, the themes it includes: it's rehab exercises, spa, sport, meetings with psychotherapeuts.... Even if it's still far away for me, it felt like good timing, at this milestone day.

Back home, I felt okay for some more hours, and the sun was out - we went for a walk, and it was warm enough to even sit outside for a bit. From the previous sessions, I knew that my body would start to react with nausea at about 5 or 6, so I took a special tablet to help with it, and then went to the bedroom.

I first read a bit still sitting, and then lay down and checked the program – and saw that there was a film about Renoir, just starting. So good. It was like a cotinuation of the museum visit, and beautiful to watch. I didn’t know he struggled with his health, and at some point couldn’t walk anymore, and had problems with his hands, too, so painting was both his passion but also difficult. It’s hard to believe that he created such lightness with cramped hands. I could sleep then, and the heavy nausea didn’t visit this time. Saturday also felt a bit better compared to the previous cycles. Sadly, the skies now turned overcast and rainy, but that makes the sun hours from this week more precious, and I’m still glad about the museum moments.

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Reading
What still helps and inspires me in this time is reading, both international books, and memoirs of others who have faced health obstacles. These are the books I read this week:



"Aya" by Marguerite Abouet & Clément Oubrerie is a graphic novel - it "tells an unpretentious and gently humorous story of an Africa we rarely see-spirited, hopeful, and resilient, the main character is "Aya", 19 years old with the plan to study. Aya won the 2006 award for Best First Album at the Angoulême International Comics Festival." - and it it’s like the reviews said, such a different image of / story from Africa. The story is set in Ivory-Coast, a bit soap-opera like, but lovely to read with the energy it has.

"The girl with the nine wigs" by Sophie van der Stap
The graphic novel reading also brought another read: while picking up “Aya” at the libary, I checked their new books, and next to that shelf was one with memoirs – and it turns out, they have Sophie Van der Stap's book there. She was 21 when she discovered that she had a severe form of cancer, and wrote about it - her book later turned into the film "The Girl With Nine Wigs", which was up in TV here earlier this month. Here's the trailer:

After her recovery, she wrote a second book - and that's the book they had at the library. So I picked that, too, curious to see how the original voice of her. In the follow-up book, she deals with returning to the “normal” life, which doesn’t feel normal to her, and she doesn’t return to her plan of studying. Instead she starts a romance with a married man, and visits her friend Chantal, who has gone through a difficult cancer like her, but without hope of curing. And then goes on a round-the-world-trip, starting in Buenos Aires. It’s touching to read how lost she is after the illness, and to see that she can’t really return to “normal”, that her whole life shifted into an emptiness – which she slowly starts to learn to turn into openness.

Claudia Kotter / Young Heroes
And the third book - is the memoir of Claudia Kotter, who was dealing with a rare disease (Skledoremie), and started a campaigne for organ donation after she faced with the difficulties of waiting for a fitting organ herself. Trnsplanations - that's yet another level of medicine that is possible, but complex and difficult to go through. It's an encouraging book, though.

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Milestone reflection
And a milestone note - so far, things have altogehter been less difficult than I thought and expected. So far, there wasn't a day that left me out of energy, unable to get out of bed due to pain or fatigue of migraine, both side effects that are common. I am glad I reached the 40% milestone of the treatments now, and that so far, almost each day also held a bright spot. Altogether, I try to see it as a time of learning more about life and it's shadow side, illness.  

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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...  my bookshelf / reading notes

More skies... at sky friday

4 comments:

Beth said...

Thank you for this, Dorothee, and for your courage in sharing your experiences with all of us. I'm so glad you've completed all the "hard" treatments now! You make me less afraid, and I'm grateful for that.

Vilt og vakkert said...

Heisann!

Thanks visiting my blog. See you have a tough time, but you´re strong and have visions, good ;:OD)
I like the colorful pipes in from of the walls of the museum.
Have nice days ahead ...

Dorothee said...

Thanks for your thoughts and lines of courage. Writing about it helps to keep the perspective, and i am still glad i went to the museum, and stepped into those moments of color and ease.
yes, hopefully the first and hardest part is completed now.

pattisjarrett said...

I'm glad to read you are coping well with the chemo, thankful for minimal side effects. Very smart of you to keep diary, logging the reactions and being proactive in preventing them.