This cancer stuff is a real emotional and physical roller-coaster. We, of course, wanted better results on Wednesday. And now it looks like we are entering into a deeper, and darker cave with the second round of chemotherapy and the realization now that the kidneys have for all extent and purposes been written off.
What I wrote on Wednesday was writing from my head – and that always sounds so much better on paper (or on a blog). But I haven’t really gotten my heart around all this yet -- and that is what is hurting right now.
We go down to the Cancer Center and sit in a room with a bunch of other suffering people and everyone is frightened – I think I can probably cut the fear there with a knife. Sometimes I feel like I am watching one of those old zombie films.
And so we enter into the consultation room, a nurse checks Sabine’s vitals and the doctor comes in and reports. Everyone seems to be running late and we all must hurry. I have a legal pad full of questions that I am trying to get answered. They weren’t. It’s time to go… there are other patients… (I want to scream, "Stop, there is a person here who is dying. Listen to us!").
I know someone must be around the Clinic who has the job of handling the emotional content of patients and their loved ones. No one has suggested this until we talked to Dr Williams today. Yes, they do have staff people who handle the emotional side of this and she will call someone and make an appointment for us… Thank God!
But whoever cares for the emotional/spiritual side of the patients and their caregivers is not a visible member of our treatment team. Why is that?
Our coverage is a maximum of $30K for dialysis. (That’s about 4 month’s worth). So, I spent most of yesterday filling out disability forms and histories for Social Security.
I also called Lisa, our GHC Complex Case Manager, and told her about what I feel being in this system… Afterwards, I had a good cry.
This morning we met with our new primary care physician, Dr Deb Williams, at GHC. She spent some time with us. She listened to us. And even had some suggestions about the situation we now find ourselves. I think we both felt better.
Is this all about my control needs? Am I different from other caregivers in that I want to fight this thing – protect Sabine? I want to know what is going to be our greatest problem (and that which I need to be wary of) – is it the kidneys? Other organ failure? Bone damage and pain? Infections? I don’t need a precise map of the future, but I do need some landmarks.
I am really looking forward to getting in with our area myeloma support group (they meet on the 19th in Madison) and some other kind of caregiver support.
Yes, I am having a tough time in this – but then compared to what Sabine is going through (both physically AND emotionally) I have nothing to complain about. But I do know that if I am to be of help in this reluctant journey, then I do need to find care for myself as well.
I have got to get over being so sad. It’s not that I feel sad all the time, it’s just these periodic waves of sadness… and struggling to open the mail…
Thanks for “listening” and thanks for your continuing prayers and support.
Our love goes out to each one of you!
