I've been trying to ignore the enormity of all of this. At times I feel like I am running from reality by choosing to live in the moment, sometimes hour by hour, sometimes day by day. I suppose it's a coping mechanism to keep my head down and not look too far ahead. Sometimes the weight gets so great that all I can do is put one foot in front of the other. Right now, this feels like a marathon and not a sprint. But there are decisions to be made and all I want to do is procrastinate the hard stuff.
One of the hospital chaplains stopped by during our last treatment stay to check on my spirit, which got me thinking a little bit more about what my spirit is made of. I like to think that the fibers of my spirit are woven with quiet determination and confidence, self-reliance and independence. The threads of my spirit bind together the various tapestries of so many pieces of who I am, even though sometimes I feel like I might be barely hanging on by one of those threads. The bones of my spirit are tough, providing a solid foundation of strength and courage for my family, but sometimes I do feel weakness in my metaphorical bones, just like Eli's physical bone.
The chaplain didn't represent any one faith. We discussed Eli's diagnosis and the weight of it all. She asked what I was doing to cope with the heaviness and I told her that I wrap myself up in the busy-ness of it all. She asked if I was a doer and I am for sure keeping myself and my mind occupied with all of the doing. She said that people fall into different groups with their grief responses and tend to be 1) feelers who sit with the emotions and find support in others 2) thinkers who research and analyze 3) doers who jump in to plan and problem solve and 4) dreamers who try to imagine that everything will be okay.
I am mostly a doer and a thinker, but at times I find myself identifying with each of these types of responses. The feeler breaks down every few weeks while the thinker joins osteosarcoma support groups online and reads survivor stories and researches surgery options and the doer packs bags, prepares meals, sets alarms and makes phone calls and the dreamer has hope that there is life beyond the diagnosis, treatment and recovery. There is room for all of it.
I haven't gone into too much detail about the decisions we have to make with surgery. The tumor is very close to the knee and because the surgeon has to get healthy margins, he is not sure how close he can get while still keeping the knee intact. We will get a clearer picture when they do the final re-imaging scans before surgery to see how much the tumor has shrunk and what the bone looks like at the knee. If there is any risk of malignant cells or a possibility of not getting all the cancer, then they will have to take out the knee as well.
If that's the case, then Option 1 is a megaprosthesis, which consists of a titanium rod in place of the affected femur, a metal hinge/knee that rests on a plastic shelf on top of the tibia and a metal peg inserted down into the tibia bone. The pros are that Eli would have a normal looking leg on the outside, and a functional knee that can bend and rotate, but would not be able to do any high impact activity like running or jumping. There are risks of infection because there is so much metal in the body and bacteria that attaches to metal is hard to treat with antibiotics. He would be able to walk right away, but healing would be slow and affected by chemo, which starts up again 2 weeks post-op. The cons are future surgeries as equipment fails or wears down maybe every 10 years.
Option 2 is a rotationplasty, which basically removes the affected lower femur, knee and upper tibia and takes the lower half of the leg, turns it around and attaches it to the thigh. The heel becomes the knee and the ankle becomes the knee joint. The foot becomes the tibia and a prosthetic can be attached for the remaining leg/foot. The pros are that he would retain all of the nerves and all of the parts would be his own body, so the potential for infection and complications go down. He would actually have more mobility and function with this option and be able to play sports, after a lot of physical therapy and rehab. Eli does not want to do this option.
We got through the first chemo treatment, got through feeling nauseous, got through losing hair, got through being neutropenic, got through the second chemo treatment, but it's this third chemo treatment that is starting to make me realize how real and life changing all of this is and how hard on the body it is becoming. He has had a headache since Saturday. His chest is feeling better. We have an appointment tomorrow to check counts, which should be high and then we will admit for the first round of Cycle 2. Fortunately, this is a shorter stay and we will be home Sunday. Then we have two weeks off to recover. My hope for this round is that we have a better nausea plan in place going home and that he has a nice long two weeks before we do the MTX again. My mom is coming up for the week of Thanksgiving and I am really looking forward to seeing her and doing some puzzles together.
Eli's baseball team worked on this amazing quilt that he can use during treatment. Each gray square has a message from his teammates and coaches and it was lovingly quilted by the grandma of one of his friends. I know that he will cherish this forever. You never envision that you or your family will face something like this, but if you do, you want this kind of support squad behind you and standing beside you. 💛
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♥️🤍💙 hugs friend!
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