Chris mentioned in his blog last week that he didn't want to hear "the C word", but for me I think the word that hit like a ton of bricks was coming up to the "oncology" floor. When we first met Dr Sobrov I knew that having Huntsman on his jacket could only mean one thing, but found it interesting that Hematology was listed on his jacket but it didn't say oncologist. During his appointment with the neuro ophthalmologist almost a month ago, I distinctly remember my brain shutting down as one after another they kept talking about "scary words". Words like "carotid cavernous fistula" and "Interventional radiology". Those words are now something spoken of regularly, and even more scary words are part of our regular vocabulary. Hearing that they were fairly certain he had cancer was hard, but now a week and a half later still hearing they still aren't sure is a unique kind of pain.
For today, we spent most of the day at Huntsman. While they worked to arrange dialysis, we sat for about four hours in the waiting room for clinic 2c, the clinic for bone marrow transplant and multiple myeloma patients. Looking around at the average age of patients, it's hard not to notice how out of place we are. Most of the patients are easily many decades older than us. It reminded me of one of our favorite Christmas movies, Elf. No one deserves to have cancer at any age, but being here when we are both still so young is... well, there are no words.
However, we are so grateful that we have ended up in the hands of Dr Sborov. He stopped by and checked on Chris while they were drawing blood, then spoke with us for almost an hour about where things stand. He said that when he got back in town on Saturday and found out about the bone marrow results he was so discouraged. While we waited for almost four hours for them to figure out how to get him dialysis today, he came out several times to update us. He's amazing at keeping us in the loop of what is happening, and also keeping us informed of his contingency plans. If he finds out tomorrow that they bone marrow biopsy didn't got well and isn't going to yield the needed results, he said we'll have another talk about what to do. He explained it that we are walking a fine line... trying to wait for answers, start treatment without certainty and give his kidneys the best chance of recovery. He never makes any question or concern seem small. When he noticed out of the corner of his eye, while talking with Chris, that tears were forming in my eyes, he made sure I had a tissue. He shares our frustrations at how bumpy the road has been and is doing everything he can to improve things. He see's how making the wrong decision at this point in his life can have a huge impact on the rest of his life. When he came to to the room to update us on the status of dialysis he ended the conversation with "We are a work in progress"... so glad to finally have a very smart ally on our side.
Glad you feel his is on your team! That he makes you feel comfortable.
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