Starting to think that it would be interesting to document how much time on the phone we have spent with different doctors, nurses, case coordinators and doctor offices in coordinating my care and management of my “case” to get the right diagnosis. Because of variance in the results of my bone marrow biopsy showing lymphoma in my bones and spine, Dr. Barnes felt the need for possible more tests including a surgical biopsy that would take more tissue to be evaluated. Dr. Smith agreed and we have been working with Dr. Levheim (PCP) as well to be sure that the insurance is in line to cover all these tests and visits.
We talked to Dr. Len again this morning – which again has grounded us to look at the situation, where we are and what we need to advocate for moving forward. He again advised us with a lymphoma diagnosis there is so much variety in treatment we really need to be sure that the tests are done and the entire area looked at and reviewed in the PET CT scan and further biopsy tests if needed.
Then we talked to Dr. Barnes — and found out he has not yet seen (and the Mass General Pathology Department) have not seen the slides yet as they went from Vermont to Cooley Dickinson before they could be sent. He encouraged us to call Pathology at Cooley to expedite and track it to be sure they get it timely. We called Cooley – it was sent yesterday – Mass General called us back – they got the slides. Hopefully Dr. Barnes will be able to evaluate them and give us a definitive plan moving forward by tomorrow and we will be more in line for this diagnosis to be correct and we can start treatment! 🙂 So I may or may not have another biopsy done before this is all said and done. 🙂
(yes that was a smiley face because I have this lump (s) in my stomach that from the PET scan results shows the spleen at 2x the size it should be.) 🙁 AND I really want it GONE.
The other round of calls has been with our health insurance and now we know our case worker and nurse point of contact by name and have direct numbers. It has been a good morning for that as Joyce and Ann have been helpful and positive. Policy is policy, pre-authorizations necessary and notes and reasons all needed from docs to get the paperwork done in time for 24-48 hr approval process. Although with this rapid growing thing inside of me, it is sometimes tough to wait much longer. 🙁
So back to the original reason I started this post was my thinking about all the needles so far and the future of needles moving forward……
And yes – – I am continuing to run – I ran yesterday and will today – more for my sanity I think, but I really want to hit this in the best shape possible. And if I can continue to run, I don’t want to stop now! : ) Not sure if I will be able to race – at least not until this lump is gone, but as long as I can still run, I will run. 🙂
Please keep us in your thoughts and prayers.…. we appreciate all your notes and kind words and encouragement and strength. It has been tough to keep up on the voice mail, so please comment below!
We thank the Lord for all his guidance and care – as we as make the right choices and advocate for our health for the best chances of a complete cure.