Tell the Bees

Lina Update: Fighting the Brain Tumors


Dear Friends and Family,

It’s been a long time since we wrote to you about the new brain tumors discovered at the end of July, but we kept waiting for results and a follow-up plan to fall into place so we could report it to you.

Lina received chemo therapy throughout August – two treatments at Dana Farber Cancer Institute in Boston, two in Portland. The treatment plan she’s on for the brain tumors is one pioneered by a noted neuro-oncologist at Memorial Sloan Kettering Cancer Center in NYC. It is in clinical trial at the Dana Farber. It involves a chemotherapy mix Lina hasn’t had yet, followed by radiation – which seems to be the routine for brain tumors. Post stem-cell transplant, Lina is in “uncharted territory” according to her oncologists – so each new step has to be newly designed.

Her symptoms from the brain tumors subsided and the docs were confident that the tumors were shrinking.

But by the end of August her weekly blood tests a.k.a. as ‘labs’ started showing a very low sodium count, as well as acute anemia. Both somewhat mysterious to the docs. Lina stopped driving, due mostly to the numbness on her left side resulting from ? … residual swelling in the brain from the tumors…or some injury at the level of the spinal cord, from the lymphoma or the treatment? no one is sure.

Lina also got new glasses in mid-August, due to development of double vision. The eye-doc said her eyes used to be able to compensate for it, but now she needs a special prism in her glass lenses to help out.

A brain scan – MRI- on 9/14 showed the active cancer of the small brain tumors gone and the larger one 90% resolved. Everyone was pleased that Lina was responding to the new drugs, despite the low blood counts and swollen face (“moonface”) reaction to the potent steroid in the chemo drug mix. The Dana Farber oncologists suggested one more short dose of Temodar (brain tumor chemo drug) prior to radiation, but Lina’s blood counts needed to be higher before she could take either of those. On 9/19 she had a blood transfusion to help with the red blood counts. 9/27-10/1 she got shots to boost her white blood counts. 10/9-13 she took the Temodar at home as pills.

September 25 Lina had the opportunity to hear one of her favorite poets, Mary Oliver, read at Bates College in Lewiston, ME.

In October she started a program of increased supplements to boost her immune system, since being stronger than the Lymphoma seems to her the best road to beating this beast. Much of October we expected a schedule for radiation to materialize, but Lina’s blood counts remained too low to make that plan.

She also began reading and using Boundless Healing: Meditation Exercises to Enlighten the Mind and Heal the Body by Tulku Thondup to help her visualize the healing and keep her optimistic.

10/16 Lina made sure our taxes were finally filed. And helped celebrate Chloe’s 17th birthday with a great dinner. 10/17 she went on a town-sponsored field trip to Boston’s Italian North End…happily eating her way through both days – she had to recover somehow from those tax forms!

However, at about the same time a new, severe pain developed in her right thigh, and occasional shooting pain in her lower back…symptoms of yet more new Lymphoma in her lower back?

On October 25 we started a series of scans to assess her current cancer status. On 10/25 Lina had an MRI done on her upper spine. On 10/27 her brain MRI was done. Both came back clear of any active cancer. Great news! But it was hard to rejoice until the 10/30 lower back MRI results were in.

‘Mapping’ for the radiation was done for full brain and lower back. Re-radiating the lower back is a bit tricky. One cool thing is the face mask the radiology team makes as the “immobilization device” – molded of a plastic mesh, the mask is made over the patient’s face and used to keep you still during radiation – and to mark on so patients don’t have to have tattoos on their face and neck anymore. And you get to keep the mask after radiation is done. Lina’s into it as a sculpture.

Unfortunately the MRI results on the lower back showed an abnormality in the L2 and L3 areas of her spine. It was possible that this was inflammation in an already irradiated area, or Lymphoma again. So the docs at Dana Farber wanted a lumbar puncture (a.k.a. a ‘spinal tap’) and PET scan to help assess. These were done on 11/1 and the results confirmed that there were new Lymphoma cells in her spinal fluid.

All the docs agreed that it was very unusual to have the cancer disappearing in one part of the body while growing in another part. But the L2 and L3 areas of the spine were where the largest area of Lymphoma was located in January, so it was a weakened site already.

On 11/2 the plan was made for chemo therapy directly into the spinal fluid to treat the new lymphoma: 2 times a week until the Lymphoma is gone from the CSF (cerebral spinal fluid). Because getting two spinal taps a week for 4-8 weeks borders on inhumane, the alternative was to have an ‘Ommaya Reservoir’ implanted into her brain by a neurosurgeon. (The ‘Ommaya reservoir’ is a plastic, dome-shaped device, with a catheter attached to the underside used to deliver chemotherapy directly to the central nervous system (CNS or brain and spinal cord). Last Friday, 11/3 Lina was admitted to Maine Medical Center Hospital and the brain surgery was done at 7:00 am on 11/4. She did great and was back in her room by 9:30 am. She spent a 2nd night in the hospital and came home exhausted on Sunday 11/5. That night she fell asleep on the floor of our walk-in closet. I guess it was the cocoon effect

The next day the new round of chemo started at Mercy Hospital, where she spent the night after throwing up for an hour after the chemo was given. It was the first bout of vomiting she has had in 1 ½ years of chemo treatments. Lina came home on Tuesday in time to cast her absentee ballot for the local and state elections.

Last Thursday – 11/9 – the 2nd round of chemo went much more smoothly due to a change in anti-nausea pre-medication and the chemo-cocktail as well. Lina’s on a 2 x/week routine until the Lymphoma is gone from her spinal fluid, which will be checked each Monday starting 11/13 for approximately 4-8 weeks. Then the radiation will be scheduled.

Craig’s mom Ruth has been a great sport about becoming the #1 chauffeur, driving Lina here, there and everywhere.

As always we are extremely grateful to all of you for your love and friendship that helps us keep our chins up and one foot stepping in front of the other from day to day…. Your notes and companionship and calls and prayers that nourish our souls, the meals you organize and cook that nourish our bodies, the walks and play dates that our dog Jackson enjoys with you and your dogs, little gifts, rides and outings for Lina…suggestions of funny movies to see. It all adds up to an amazingly strong web of optimism and support.

Lina welcomes phone calls, e-mails and visitors.

We’ll keep you all better updated,

With thanks,

Craig, Lina, Chloe and Moriah

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