“Rads”part 1

6/8/16

Today I had my radiation dress rehearsal. There were 3 technicians doing all sorts of measuring and adjusting and taking films and photos and such. I had to lay completely still the whole time as they scampered about and in and out of the room. They drew all over my chest. I kept thinking about Laurel who would’ve loved to participate. There was decent music playing. Everyone was very friendly and we got a free parking pass. Then Matt and I made the biggest single purchase of our lives. We spent almost $5,000 in a moment, not for a vacation or a vehicle or a piece of land, but for 2 small bottles of a chemotherapy drug. 2 small bottles that insurance wouldn’t pay for. 2 small bottles that should boost the effectiveness of radiation. 2 small bottles of make you feel worse to help you get better. 2 small bottles of this, again, but different. 2 small bottles of hopefully less side effects than the last 2 times.

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So far my medical insurance has covered everything, so I hesitate to complain about cost. The numbers attached to cancer treatment are out of this world and I can’t imagine how I would be getting through this without coverage and extra financial support. When you are going through a medical crisis, the last thing you truly want to do is worry about money. My situation is rare and the studies/data will never exist to sufficiently warrant the use of this drug to the insurance company’s standards. Life-saving medicine should never be so expensive and it is sad to admit that we thought it would cost much more. Bottom line-I am so grateful for access to excellent medical care and all the love and support.

Tomorrow I begin phase 3+ of cancer treatment. 30 radiation sessions, 5 days/week, with simultaneous, self-administered chemo. Putting my trust and hope in some mind-boggling technology (physics and lasers) and chemistry and those that understand it. Sending out thanks for all the support that has gotten us to this point with sanity intact and the ability to pay for my medicine w/o going into debt.

Matt, Baba, the girls and I are staying at the SCCA House until 6/17. It is a lot like a hotel but for cancer patients with communal areas/some perks. It is extra clean, has a rooftop patio and I can walk to the clinic, a park, REI and Whole Foods, but we are all sleeping in essentially a small studio w/o a kitchen. We move to a family home in the Mt.Baker area from the 18th until the 18th of July. Hopefully we will make it home to Orcas a couple weekends or so during this time, otherwise just trying to enjoy the benefits of Seattle city life.

6/21/16 Summer solstice

It is an extraordinary night in Seattle. It is (thunder)storming. Lots of lightning. The  longest day of the year has come to an end and a full moon is up there hiding behind the clouds. I just started my second full week of radiation, with a side of chemo. 9 treatments down, 21 to go. I am in the flow of it and the whole process is efficient and quick. Arrive at 1:30, changed and on the table in position by 1:40 and out of the laser robot room by 2:00. I am zapped by the laser robot very precisely about 20 seconds at a time for 4 different rounds/positions/setups. It makes this not quite annoying enough buzzing sound while it is on, but otherwise it is magic to me. I am much better at laying completely still than I thought I would be, even while being drawn on and chatting with the technicians. I have had 2 sessions of physical therapy and with regular stretching my range of motion has improved dramatically. 6 weeks out from surgery and I can put on and take off any sort of clothing! The sensation has almost completely returned in my chest and arm. I still have some substantial tightness in my chest around my scar. My skin is starting to react with redness and irritation and unfortunately my “sunburn” will continue to get worse. It is amplified by the chemo, so I will have to stay covered up on my neck, chest and left arm this summer. I have started to have waves of yuck from my meds and fatigue has returned after a brief break. I didn’t realize how low my energy had been until I had a couple weeks of normal. Ugh.

While the transition was hard, especially for Laurel, we have settled into our new spot in the mt.baker neighborhood. The studio space was a real challenge and we were all more than ready to get out of there by the end of the 10 days. While Laurel did Love the elevator, I underestimated how much all these changes would effect her. She is super sensitive these days and sleep has been hard with her and the baby. I am fully aware of how important having space to myself has become. Strange words coming from my mouth but a reality of coping with cancer treatment for me. And good for all those living with me. Space, that is. Doors that close. Laurel has only mentioned going home once since we got to the big house. There is a play room full of new fun stuff and bunk beds in her own bedroom, just like home. Oh, and did I mention she decided the night before we left for Seattle that she didn’t want to wear a diaper overnight anymore and that was it. 100% done with diapers within a couple days. Today she was dancing/performing in the lobby of SCCA and didn’t want to leave. She was calling it ballet but it seemed more modern/interpretive to me, with narration of course. Daphne has had some serious constipation issues after we switched over to mostly formula, but we are back on a strategic amount of breastmilk and prune juice concentrate everyday and that has mostly done the trick. She continues to light up every room with her smiles and babbles and is pretty much sitting up on her own now. 7 months old today!

I am feeling exhausted from all this cancer business, despite the satisfaction of doing something every day to address it, it also makes it hard to distract myself with normal life and escape from the scary reality of it. 8 months and counting of active treatment. Many hours in the car and on the ferry and parking garAges and in traffic and loading and unloading kids and waiting and rushing around. Many hours in doctors offices surrounded by other cancer patients at various stages of care and sickness. And I want to talk with them so I don’t feel so alone and out of place in all this and hear their stories and struggles, but then I really don’t because it is like looking in a mirror and your mortality is staring back at you. I have lost count of how many times I have repeated my name and birthdate, put on one of those awful oversized gowns and had my vitals taken, every time the diagonal scar flashing around where my breast used to be. I don’t like all these new routines. I have had enough of this high stakes business but unfortunately I am entrenched. I look forward to the fall when I hope all this medical attention I am receiving can be replaced with the attention of friends and family. I vow to replace every appointment with a walk or a chat or a shared meal or a song. In the meantime I am embracing summer in Seattle and wishing you well. And continually grateful for the variety of support that continues to flow in our direction.I love to hear how life is going for you.

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The beginning of my radiation burn on my chest is visible in our selfie with the baby dolls.

 

 

 

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