Not what I expected. Our discussion moved from cell counts, dosage and severe side effects to quality of life issues.
Tim was ferocious regarding what happened to me during the MRI. I was physically hurt through complete willful belligerence. He was furious about the fact my Oncologist actually expected many of the side effects that have happened to me not as a result of the hormone blocker but as a result of the booster drug. It was not a necessary drug and the other drugs work fine without it.
I have been in bed most of the time since August and have had such serious side effects I had to be watched 24 hours a day. These side effects were severe vertigo, vomiting enough to lose an enormous amount of weight, at least one nose bleed a day and bad pain. I also developed severe and debilitating reactive airway symptoms that managed to make it so breathing was difficult and my oxygen sats dropped 6 points. The depression and emotional impact of the drug was also huge and life ruining.
All off this not part of a necessary drug regime.
Tim had to take time off work when it may not have been that necessary and friends have had to come in and care for me. We have had to hire someone and buy expensive off protocol drugs to get me through this. Tim was sure that I was not going to make it through the fall.
I am definitely not through it yet but one day off the drug the side effects have dropped by half. I can almost breath clearly, I stood up without fainting or tipping over. I ate real food and kept it down.
Tim and Femke are hovering in the sweetest way. I hope they can stop doing that. But to have their love and care is enormous. And I will never doubt my beautiful husbands dedication and love again.
I look at him and he glows with the most serene and beautiful light. He has barely had a minute to himself or a good nights sleep in weeks. I am overwhelmed. His generosity and kindness have made this almost worth it.
He put up the beautiful antique canopy bed in our bedroom. He painted the hallway and the second floor. He lovingly created another space for me to sleep in the big window in the living area. It meant he had to re purpose and construct platforms while Femke, Chris or Judy watched me. It is a beautiful, peaceful space where I can take part in the life of Sweethaven while still in bed.
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| Tim on the Mount Park just behind Sweethaven. 2014. |
Femke pulled out my needle bag and handed me wool. It was very hard to coordinate myself at first but it is now happening. I am using my hands today.
It looks like I might get a little reprieve where I will hopefully be able to finish documenting my work and try to make some new work. All the plans are there. The material is there. And so is a little bit of energy.
Time for all the crap to get shoveled out of here and scrapped off my shoe to make way for decent people and experiences. I have learned so much this fall. Lots of it not happy. Some of it shockingly ugly. But lots of beauty. There is clearly no more time to follow any other agenda but the one Tim and I define. He is with me for six months if we are lucky enough to have six months. If not... we will make other plans.
I am deeply in love with the man I chose to spend my life with and raise a family with and start to grow old with. Even though it has been 33 years. It is better right now than it has ever been because of the deepest connection possible. He is a truth teller, has nothing selfish or shallow about him and he lives with integrity every single day. I could never measure up but I will seriously try.
Right now I am hungry. For the first time in weeks.
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