Sabrina is in the hospital recovering from surgery. Please read today's update for the full story.
March 26, 2015
Cyndi has been going to PT lately, learning to walk again so she can start doing more things for herself. She is still very tired all the time and very dizzy. She's doing it though and that feels good.
Sabrina is also starting PT soon. She has been diagnosed with an acute lumbar sprain. Basically, she's moving slow and not lifting much and taking pain killers. She's been in a lot of pain and is pretty certain that the injury is a result of lifting Cyndi's wheel chair in and out of the car trunk. Cyndi is doubly inspired now to get to the point that she doesn't need the chair.
All in all, this month is better than it has been. Thank you all for the gifts and support, I know they are overwhelmed with how you have all shown up for them.
February 14, 2015
It's Cyndi's birthday, they did the first really normal thing since she was diagnosed, they went out to dinner. Cyndi was able to tolerate being up and out of the house for a few hours and they had a fantastic time. It's been almost a year and a bit of normalcy felt amazing.
They're still trying to manage the potassium loss and a few other issues. Sabrina is feeding her lots of delicious healthy foods and dousing her in essential oils. Slowly, she is feeling better. They know this is a long road and that there are bound to be set backs but the advances are a beautiful gift.
Sabrina had to rush Cyndi to the ER this last Saturday night. She has a bacterial infection and malnutrition/potassium deficiency due to being nauseous and unable to eat for so long. It is causing systemic tremors that they're trying to get under control. Cyn will be there probably until tomorrow.
I wanted to update you on Cyndi's progress and how things are going. The last 9 months or so have been a rocky ride and I know that the girls have had a hard time keeping up with everyone so I'm going to do a quick summary timeline so you know where things are at.
They still have a long road for recovery as there have been a lot of complications. Sabrina hasn't worked since April of last year as she has been Cyndi's full time care giver and medical advocate. Cyndi, because she has been an independent contractor for so long has been denied most of the expected benefits like disability. Lobbying for the support needed is Sabrina's 3rd full time job right now (she is doing her best to creatively work from home so she can care for Cyndi). Any support you can give them is greatly appreciated.
Cyndi goes in for an MRI due to lasting vertigo that they assumed was an ear infection. They find a 2 inch tumor in her left cerebellum.
2 weeks after finding the tumor and with an immense amount of support from a variety of friends and family they pay the nearly $100,000 deposit required by the hospital and Cyndi goes in for surgery to have the tumor removed. The surgery goes well but not all of the tumor can be removed as it has grown onto her brainstem which regulates functions like the heart and respiration. It is determined that the tumor is malignant.
If you know Cyndi, you know what a unique and independent person she is. She carried this into creating a new hybrid form of brain cancer. It took 3 specialty pathology teams to do what they call "forcing a diagnosis" aka "best guess is" so that they could design a treatment plan. They landed on medulloblastoma. This is unique in that it is a childhood cancer, rarely seen in adults her age.
The initial estimate for the hospital stay was 1 day in ICU and 3 in a regular room. She spends 5 days in ICU due to extreme swelling around her brain and 5 more in a regular room due to complications (a fever and potential infection). Sabrina stays at her side the entire stay, sleeping on a chair and then a couch, caring for Cyndi and advocating for her as more and more teams join the process. By the end of the 3rd hospital stay they will have approximately 27 teams they are working with.
The doctors give her 6 weeks off after surgery to recover her strength before beginning a radiation protocol. She never quite gets back to full strength. They start investigating other factors and decide to address a thyroid disfunction in the hopes of addressing her fatigue. She is still on massive doses of steroids due to swelling around the brain. These steroids eat her larger muscle masses while causing rapid weight gain. She puts on approx 40 pounds by the time radiation starts.
Because they aren't certain about the cancer they decide to do systemic radiation. This means full brain and full spine with a portion focused on the tumor bed (the bit they had to leave) to prevent any potential spread. She is increasingly weak, her legs and arms wasting away and unable to keep down food well. The overflow radiation effects other organs: she is suddenly in full blown menopause with no transition time, her salivary glands in her mouth and throat stop working, her thyroid (which wasn't functioning well to start with) is flailing, her heart begins to have issues.
Sabrina rushes her to the ER because she is having trouble breathing and is disoriented. They check her in for observation. She has developed a pulmonary embolism (blood clot in her lungs). She stays in the hospital and they continue radiation, wheeling her from her room to the radiology office in her bed. Sabrina is at her side the entire time.
They spend Sabrina's birthday in the hospital. Her heart is deregulated and at one point the cardiac team begins talking pace makers. Cyndi is having poor reactions to the medications that are exacerbating both the heart and blood pressure issues. The nausea from her stomach being irritated by the radiation is making it impossible to eat. She is living on a steady diet of pudding and Fromin's matzo ball soup.
On August 5th they release her to go home. They're home for approximately 5 hours before Cyndi collapses and Sabrina has to call 911. They spend the night in county hospital and then are transferred back to UCLA where they spend the next 2 weeks completeing her radiation treatment. Every doctor says repeatedly that her response to everything is atypical. She is uniquely sensitive and responds unexpectedly. The oncologist takes her recommendation of chemotherapy off the table. She is concerned that she wouldn't survive it.
By the time she gets home Cyndi can no longer walk. Her legs are wasted and no longer have the strength to support her. Sabrina has to physically lift her and she comes home to a hospital bed, needing 24 hour care. The plan is that she will work at home with Sabrina's assistance to rebuild her strength to the point that she can tolerate up to 3 hours of movement so she can be admitted to the in patient neurological rehab program. Cyndi prints pictures of the people she loves and the life she wants to return to and has Sabrina tape them all over the bedroom walls so that she can focus on what is important to her.
She is still taking massive doses of steroids. This means she has to work twice as hard to get half the normal return of muscle building. Together they get her to the point that she qualifies for the rehab program and she is admitted. The doctors want to wean her off the steroids while she is the in patient program in case there are any complications since she is so sensitive.
Cyndi does fantastic in rehab. She makes friends with everyone and comes home walking with the assistance of a walker, about to graduate to a cane.
Then the nausea begins. She starts dry heaving, they think at first it's that the new, lower dose steroid doesn't agree with her stomach (the plan at this point is to taper her off the steroid slowly in an alternating dose to encourage her body to restart adrenal function). The endocrinologist changes the steroid. It gets worse. She can't eat. She is carrying a bucket everywhere and getting weaker and more fatigued from lack of nutrition. The doctor is unconcerned.
After a few weeks of unsatifactory responses from the doctor and escalating rates of nausea in addition to the new development of both high blood pressure and severe restless leg syndrome Sabrina fires the current endocrinologist and hires a new one who makes a full scale change of all the medications Cyndi is on. Near the end of the year her nausea is improving but the level of fatigue from not actually sleeping much of the time bc of the RLS is wearing on her.
The medication changes are making a marked difference. Cyndi is starting out patient physical therapy next week. She is so physically deconditioned from not eating for almost 2 months and being so ill that she is, in many ways starting over again. She is relearning to walk. This is going to be a long road ahead still.
Sabrina is still her full time care giver. They have qualified for very minimal state aid and as she strives to establish a way to support them from home, they are surviving due to the generosity and loving support of their family and friends.
They want to express how grateful they are to each of you who have extended your support to them during this difficult time. The community that we share is wonderful and a true family. I am honored to be a part of it.
- Amy for Cyndi & Sabrina Ortolano
As you may have heard Cyndi was recently diagnosed with a brain tumor. Over the next few months both Cyndi & Sabrina will be focused on Cyndi's treatment and recovery.
Cyndi is unable to work at this time, of course, and Sabrina will be stepping away from her work as well to act as Cyndi's primary caregiver, both during and after surgery, as well as through what may be a lengthy rehabilitation process.
Cyndi has insurance, fortunately, but the best surgeons are out of network, and, as Sabrina says, "I don't believe in bargain shopping for brain surgeons". This is going to be an expensive process, but an absolutely necessary one.
And it is not just medical bills that they face, of course, but rent, utilities and groceries; so that their basic needs can be met, and Cyndi can have a home to recover in, and healthy food to nourish her healing body.
Most of us have been the fortunate recipients of Cyndi and Sabrina's loving care, teaching, and/or healing work at some time or another in our lives. Let's give back to the couple that has given us all so much. Let's take care of our tribe and get them back on their feet. Give a little, give a lot, give whatever you can, even a prayer. Every gift is needed and deeply appreciated.
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