Tell the Bees

Major Bump on the Road to Lina’s Recovery

Dear family & friends,

Sorry for the bulk-like e-mail — but I’m running on empty.

Lina’s chemotherapy treatment ended in late October. In early November the oncologist told us Lina was ‘miraculously’ in complete remission. “Break out the champagne — but save the good stuff until we make it 2 years with no re-occurrence,” he said. We celebrated, nervously, and soon she was back at work and her hair was growing back.

Then a few weeks ago, Lina began having a sharp back pain – which quickly worsened.  Our family physician — who our HMO requires us to go through for everything medical — said the back pain was probably just caused by a muscle pull or pinched nerve caused by a fall on our icy driveway in December.  “It couldn’t be lymphoma related,” she said, because the last CAT scan/MRIs were clean and so recent. And so… the family physician would only prescribe physical therapy and acupuncture – not the more expensive MRIs and CAT scans that could check for possible new tumors.

The pain grew intensely severe – to the point where Lina couldn’t function at all, even with heavy medication. Then our family physician didn’t return our numerous phone calls for over a week. I was frantically pissed off and demanded to her staff that she order us an MRI to find out what was going on. And so, finally, last Tuesday Lina went to Maine Medical for her 2:00PM MRI exam. Soon after they finished, the MRI technicians told her only — “Get down to our emergency room fast!” She called me scared and upset and I rushed back to the hospital – and then we wait, and wait, in the emergency room line for over 7 hours – with Lina crying out in intense pain the whole time. At midnight, we finally see an emergency room MD who knows nothing about Lina’s case or the MRI results and actually asks us, “So why are you folks here tonight?”

Eventually, they page her then-asleep oncologist at 2AM and tell us they need to admit Lina into ME Medical right then.  I tell Maine Medical Center, “after the way you treated us tonight – fuck you,” and we left and drove across town to Mercy Hospital instead where they admitted her at 3AM.  All day Wednesday they do lots of tests then called to tell me that the pain is being caused by an incredibly ‘aggressive’,  i.e. fast-growing, lymphoma tumor at the base of Lina’s spine — which is seriously messing with all the nerves to her lower body and paralysis or worse is imminent if they don’t stop the growth immediately. Wednesday-Friday she was in rough shape with such intense pain that the maximum morphine dosage they could give her wasn’t even enough. And, her systems were all going into shut down mode — and so now she’s hooked up to lots of life-support machines. They have her on a morphine pump and the pain seems to be finally under control. At midnight Friday, they started a new round of chemotherapy that gets into her spinal/brain system but it takes over 11 hours to administer. She’ll have it done every 2 weeks indefinitely. Tomorrow, if the tumor hasn’t responded to the chemo yet, they’ll start radiation treatment aimed at her spine. Her oncologist MD says that once they’ve got her stabilized they will move her treatment out of Maine and to the Dana-Farber Cancer Institute in Boston — probably for a ‘stem cell transplant’.

My girls and I broke hospital rules tonight and decorated her walls with lots of family art. Lina was doing much better spirit-wise and says she’s ready to fight back and beat this. And, we are shopping around for a new ‘HMO-approved’ family physician.

So it goes…


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