Raindrops and Sunbeams

Bumps and blind turns…

Posted on: September 23, 2010

It has taken me a while to absorb what all is going on/not going on with me….so have spent a bunch of time doing more research…and neglecting to post.

First – the results of the PET scan showed no malignant activity anywhere in my body. This is GOOD news, yes?! I was glad to read that, but then it got tempered by a comment from my oncologist that she was ‘surprised’ that the test was clear. Hmmm… have to admit it really bothers me that the one test is in direct contradiction to the other. So….am I or am I not in remission?  Hoping so, but it’s not really clear. PET scans sometimes do not show activity from an indolent lymphoma (which I ‘think’ I have) – and so that muddies up the waters. Then there was the oncologist’s insistence on setting up an appointment with the Massey Cancer Center in Richmond to ‘start the process’ of getting prepped for a bone marrow/stem cell transplant.

And here is where confusion turned to frustration, and more research….and a couple of decisions. From my research, going straight from a very good response to chemotherapy to a SCT was a bit odd. On the one hand, good to do when one is in remission – and yes, it is the ‘only shot at a cure’ – as the oncologist kept repeating……but it comes with no guarantee, and costs a very large fortune. Just doesn’t sit well with me….there are plenty of other therapies that are not so intense as destroying one’s immune system and then replacing it with a ‘cancer-free’ one.

I then tried to get out of my oncologist the ‘why’ of the fact that I still don’t know what type of lymphoma I have…..b-cell is a general classification, and there are a slew of sub-types. Those sub-types have a lot to do with when-what-how the lymphoma is treated. Not for use right this moment – but looking ahead – it is a possibility – and I refuse to be blindsided again simply because I don’t know. This is where the oncologist and I had a major disagreement. She shrugged it off with ‘oh, that’s the pathologist’s job’. Ok….the pathologist didn’t DO his job, so why did you not push further? Another shrug – and a comment ‘for her purposes, it made no difference in the treatment she was going to use’. Ok….again – for first line treatment, maybe not. But to have incomplete information, and not even being offered an attempt to find out more. Sorry…doesn’t cut it. We will be parting company. I could see she was very uncomfortable with all my questions….and even said ‘you want answers, and I don’t have them’. Again….wrong answer. It is my body and I want ALL the information I can get….and if she won’t/can’t provide that, I will find someone who will.

So….I agreed to go to Richmond. It will be good to have the info on a SCT (stem cell transplant – and these are adult stem cells – I would never accept anything other than that). It will also be a perfect opportunity to ask the doctors at the Massey Cancer Center why I don’t have a definitive diagnosis, and ask for a second opinion on it. I have all the reports – and they have the power to get the original slides. I will also be asking them for recommendations for some other haemotologist/oncologists close to where I live….

Meantime, I’m doing more research – this time for insurance. Wonderful to know that we will yet again, be losing our Medicare Advantage insurance at the end of the year…that makes two companies in two years. Almost afraid to see if there will be any companies left come next year…oh, yeah, this new health care bill is just great (and that is with several tons of sarcasm – and don’t get me started on that one). Anyway – I called to simply find out IF a transplant is covered by my insurance….and was asked ‘do you have the procedure code for that?’ Now why would I? So….went googling for the Medicare Coverage Determinations Manual …..and found it. Found out that a allogenic (somebody else’s cells) transplant is NOT covered. An augologous (my own cells) transplant IS covered, but only for ‘resistant lymphoma with poor prognostic features after initial response’. Somehow I don’t put myself in that category – so why did my oncologist think I should get going on it? Does she know something I don’t – shame on her if so. Maybe she just doesn’t know the requirements….and leaving it up to them to reject me over that.

If my plans for the Richmond visit don’t work out as I have envisioned….I have an appointment with my primary doctor the day after this visit….at which time I will ask for a referral to another haemotologist/oncologist (and yeah…I’ve researched them too for this area)…and get in to a new doc, and get that second opinion so I will finally KNOW what type of lymphoma I have….and the information to make more intelligent decisions if/when need be…

So….maybe some Raindrops around here….but God still sprinkling around those ‘determined’ and ‘hopeful’ Sunbeams….and the light wins!!  Trusting God to walk me down this path!

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6 Responses to "Bumps and blind turns…"

Trusting God with you and praying for you. Love you. C.

Good job mom – keep ’em straight – I’ll keep praying every day

It seems curious why she is evasive …. we will keep you in our prayers and get second opinion love you!!

Keeping you in my prayers. You are an inspiration because of your walk with Jesus. I am claiming victory for you. Love Bridget

Hi Trish,
You know I have run into the same problems with my primary care manager and some other doc’s. I have heard that we need take an active role in your health care but I get the brush off from my PCM and he makes me feel like he thinks I am being pushy and that I should not be involved like I am.
He once had the nerve to say to me when I requested an exam,
“If you keep looking you are going to find something!?”
Well, he is still my PCM but since then I have learned how to go around the system and him. Many doctor’s act as if we don’t have a vested interest in our bodies? I am with you stay at it and watch for Gods guidance.
I am sorry about all these obstacles with this insurance company.
Let me know what I can do to help or who to write.
Sonja

Wow!! I am keeping you in my thoughts!!!

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