Providence Info
Welcome to my Healing Journey Blog
Writing is a way to process the journey I never expected. Each month a new section will appear at the top of the page, once the month has passed that section will then follow the previous. Please remember you can check online for more medical information and there are links in the text.
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Thank you for your support as I face the challenges ahead.
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- Valerie
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Alternative Choices
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2/17/25
I slept well last night. When I wake up I feel good, until I decide to check if I may have missed anything, an alternative treatment for MDS, what is my life expectancy, if I’m high risk will I definitely get AML (acute myeloid leukemia) in one to two years. If I feel ok today how can I better understand what lies ahead? Tears are necessary but solve nothing. My friends respond lovingly, even my 79 year-old cousin in Germany has offered to be a donor. I am touched daily.
2/21/25
Yesterday I saw my hematologist on the Vineyard. This time I really looked around the Oncology waiting area. The chairs were spaced further apart despite the small space. Yes there is art on the walls. Where I remembered a hall is a wall with a 20x24” framed black and white photograph. I got called in promptly, weighed down the hall, shown to Room 2 and had my blood pressure taken. The doctor arrived shortly. This was more of a support and info visit. Our small hospital is fortunate to have both an Oncology NP and a former director of BMTs at MGH who lives on the Vineyard and sees patients here, so trips to Boston are minimized.
Also this week an old pal from my Vanity Fair days reached out with a couple of healers she’s been working with and thought I might connect with. I listened to Rob Wergin, and found the tightness in my chest I’d been experiencing in the last two weeks melted away and has stayed that way since. I ended up watching the documentary “Heal” by Kelly Noonan Gores. I cannot find anything online about someone healing MDS or Leukemia on their own, but being in a better place mentally can only help.
No matter the alternative healer/practitioner one thing all have in common is the belief that to heal oneself you must learn to love yourself.
March 4
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I spent the last week reaching out to an alternative IV center, a functional medicine office, my hematologist and other local connections trying to find someone who could order the blood work my Integrative ND Oncologist recommended prior to starting some new supplements to support my system at this moment. My mentor is in California and cannot prescribe in RI or MA, neither can my Vermont based Integrative ND Oncologist who also practices out of Seattle. Almost at wit’s end, but with more things I cannot control I soften, and wait. Now with the help of friends I can move ahead. There is an awful lot of administrative stuff to take care, take my mind off the daily back of my mind questions – isn’t there another way (besides a bmt)?
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Staying in a Former Prison and Getting a Life Sentence
After seeing his new cardiologist at the end of February my husband learned he likely needed a pacemaker. First offered for May 22nd, he asked if March 10th was available and got booked for 11 am. We have stayed at the three closest hotels to Mass General for previous hospital admittances or discharges. I realized being as close as possible for my husband was important and literally moved us across the street. His procedure seems to help distract all of us from my previously scheduled round of visits with the MDS doctor, the bone marrow transplant doctor, and the BMT nurse.
We waited in our hotel room until 10:30 am before heading to a ground floor waiting room in the main hospital building. Once a nurse came for him it was get ready and wait. All the nurses were amazing. I finally left for lunch around 12:45 pm. My husband’s ablation took place first. His doctor phoned at 3:51 pm and explained the situation and necessity for a pacemaker, about another 1.5 hours of surgery, which turned out to be 2 hours involving a little more attention and then another full explanation plus Q&A phone call from the doctor at 6:16 pm. My husband needed to spend the night and once he was moved to his own room the nurse would let me know so I could visit. That was at 7:37 pm.
At 8:35 pm I returned to the hotel and went to bed. Not sleeping so well, no fresh air. At 3 a.m. I played one of Rob Wergin’s monthly healings for large groups – it helped. I had leftovers from my dinner for breakfast and we will both do the same on our last morning.
On Tuesday, March 11th I visited my husband, brought him hot coffee and fresh orange juice before heading to Yawkey 9E where I showed up at 9 am for bloodwork. Both of my sons arrived and joined me in the waiting room while nearly a dozen or so first names and first letter of last names were called. Finally we heard “Valerie S.,” got up and followed our nurse through the warm woody feeling waiting room into a series of long grayish halls with intersecting halls, room upon room. The boys got wooden chairs and I had the cushy examination chair. Meanwhile in Providence a lead inspector visited my tenant at 9am, there’s a terrible mildew issue at Corliss Corner, and the heat and hot water were still not working at Sutton Street with guests ready to check-in on Thursday. After all the appointments, some crying we left and picked up lunch for my husband before I continued to be m.i.a. with my sons, outdoor lunch, a walk, a coffee in the Common, and then returning to the hotel for a 4pm talk with healer Rob Wergin speaking to 250 Zoom screens around the world – sharing in opening our hearts. Yet out of this father figure-esqe man came the exact words I needed to hear: “There is nothing to be afraid of.” I only want the most loving compassionate people around me. “There is nothing to be afraid of.”
Last week I had deeply researched an Ivermectin-Febendazole protocol. Despite 1 -2 documented cases of healing MDS, I have learned the biggest predictors are the gene mutations which is not targeted by this protocol. I had my functional doctor and the naturopath weigh in. I read through a 270 page document that sighted Dr. Makis’s case referring to a 70 year-old former Olympic athlete with MDS. I perused the existing database of cancer cases cured by ivermectin protocols. With my ND saying my liver and kidney were in good shape I planned to try Ivermectin-Febendazole, ordered the brand she recommended, what did I have to lose if that could alter the outcome. However after seeing the results of all the morning bloodwork on March 11th and learning I had a two-year life expectancy without a BMT, and though extending my life expectancy nothing is a sure cure for the long run, I would have a better chance at a long run with a bmt.
My oldest son was most impressed by our learning from the BMT doctor there are three places in the world doing a trial with a targeted drug for the cell mutation that puts me in a high risk group. I have four mutations and two already have targeted drugs. The morning went by with a clock in the examination room that had not sprung forward. Between Dr. Brunner and Dr. Chung and the sweet nurse, besides my husband being discharged at some point during our meetings necessitating my younger son to receive him and accompany him back to the hotel, where we would spend another night, then I received a brochure/pamphlet, a what to expect when you’re expecting an “Allogenic Hematopoietic Stem Cell Transplant.” The morning had been calm and overwhelming.
The irony of staying in a former prison and being given a life sentence versus a death sentence was not lost on me. My sons and I left the hospital and went across the street to Antonio’s to order a pasta and broccoli dish for my husband while we went to Anna’s Taqueria down the street to order our own. Outside the hotel bar is a courtyard sitting area where I left my sons while I brought my husband his lunch. When I returned twenty minutes later they were both asleep, reminding me of our trips to Berlin to visit family. We flew overnight and when we’d get to our hotel in the morning, the rooms would not yet be ready and my sons would flop down outside in chairs or couches and fall asleep. The whole afternoon together walking, grabbing drinks at Tatte, and sitting in the park felt like those once upon a time vacation days so long ago, but oh so soothing in the midst of all that was going on.
Dr. Brunner said I needed another bone marrow biopsy, but there was no way I was going to Boston when I can get it on the Vineyard. Instead of that Thursday or the following Tuesday it would be the following Thursday. My husband, who still cannot drive until next Monday, said he’s staying in Providence while his friends are visiting for a few days and day by day since his pacemaker procedure he’s feeling better. When I realized we’d be spending the extra night in Boston I cancelled a hot stone massage for that Wednesday. I can’t even remember the last time I had a massage, but after my mother passed away when I was 45 years old I had won a gift certificate for a hot stone massage from a new spa in Piermont, NY. My heart had felt like a rock and it was the first time I let go, felt my heart and body ease about 10 days after her passing. We came back to Providence from Boston on Wednesday and now it was Sunday, the first day I was having a really hard time sitting with feelings of loss, sadness and fear. Could I find a hot stone massage? The universe answered, there was one time slot available with the head masseuse at Bodhi Spa, I snagged it. Arriving a few minutes early, I was still a mess and requested that the masseuse please wear a mask – it’s not really doable for someone receiving a massage to wear a mask. Kylie, was perfect, her touch, her kindness, the hot towels massaging my feet with oil, the hot stones penetrating the layer of protective angst, it felt like a miracle.
There’s a lot to organize so I can be out of commission, I’m working on it. The week flew by. I returned to the Vineyard on Wednesday to attend the Cleaveland House Poetry group meeting, something I manage to be on Island for every two weeks. Here’s my first MDS poem:
I live with a thin layer of fear
needles, a prick here, a pic there
there it will be a new part of me
an in and out ventricle
bringing nourishment and life
after killing me softly
to lay my body bare
to elements beyond my skin
a mere sheath for the great unknown
but now we test and monitor change
month to month procedure to procedure
first biopsy in the left iliac
and this Thursday my choice
there is another month of preparing
still need to do my taxes
find a housemate who loves dogs
read write and support overall healing
what can I create in this forced rebirth
or somewhere between the short end
and a longer life here during the decline
living thru the stripping of all cultural supports
ravenous pockets of the heartless so quickly rampage
with pizza delivery and the golden key
I can change the channel for free
watch tv while I wonder what will my energy be
folding within and without
without crying with out the daily tears
that spill unexpectedly
while I walk downstairs
all the home moments tick by
dogs at my side will be so missed
one month contained like a canary
change of clothes daily
nothing sharp except the pic
the daily dose
and a big picture view
window to the world
that ticks by and by
first thirty then 60 then 90
what will 100 bring
vjrs 3/19/25
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Not a letter to Nora Ephron
(January - February 2025)
Week after week, month after month, 2024 proved itself a year of loss, loss of friends and community members, sometimes more than one a week. At 67 years old I wondered when is my number gonna come up. So many friends have suffered through cancers and other illnesses, but I’ve been feeling really lucky..
Perhaps I should begin a series of letters to Nora Ephron, though it wasn’t Nora I was really thinking of but her sister Delia. I listened to Delia read her memoir, Left on Tenth, the loss of her sister followed by her husband’s death, and an old friend resurfacing who becomes her husband but the crux was her own battle with AML, a rare and aggressive form of cancer and the bone marrow transplants she endured. That was about two years ago. It was an inspiring life and love story, and yes I cried, maybe even had to avert my ears if it became too medically detailed – I can’t remember, except feeling lucky to be healthy.
One and half years ago at the behest of my mentor [Dr. Edythe Heus], I visited a hematologist for the first time. I had had a history of low white blood cells and she thought I should check out if I had Hashimoto’s Disease. The hematologist thought I was just one of those people with a history of a low white blood count. No Hashimoto’s. Phew.
For the last few years I have worked with Laura Indigo, a Functional Nutritional Practitioner and got used to more regular blood work in my life to tweak my supplement regimen. In the fall of 2024 I went from my normal low white blood count, red blood count and platelet count to a level that made my Primary Care Physician step in and insist I see the hematologist again, she sounded slightly alarmed on the phone when she said, "If you get a fever or have chills you need to go to the ER asap."
My next meeting with the hematologist was over Zoom because the ferry service to the island where I live was not running. He explained I will need more blood work in a month and if that did not improve, a bone marrow biopsy would be needed to gather more information. I learned our blood is produced in our bone marrow by our DNA, something I will no longer forget. One month later, no significant change in my blood work. Although I now find science fascinating I still have a hard time holding on to the information. It was a relief to learn the biopsy could happen at our local hospital. The hematologist explained the bone marrow biopsy and said I could even drive myself to and from the procedure.
In the meantime I had contacted a naturopathic group in Colorado my mentor recommended as the best “inflammatory hunters out there”, perhaps it was a delivery issue not a production issue. They told me based on some minimal testing I likely have CIRS, Chronic Inflammatory Response Syndrome, another likely culprit of not producing enough white blood cells. I sure hoped this would be my prognosis.
After waiting another week to hear about setting up a biopsy I phoned the hospital and someone called later that day to confirm a procedure date. The nurse practitioner who performed the biopsy explained the procedure step by step. Getting to keep my own clothes on made everything more comfortable. When I needed to rest for 30 minutes before standing to leave, the NP asked if I wanted to see the tools she used. “Absolutely not,” came out of my mouth. Later, maybe the next day or so, I went online to look at the tools, to square what the procedure felt like to have done; there are punches, needles, a vacuum, and brushes. The biopsy was performed on January 2nd, Hello New Year!
My best friend from second grade is a doctor, she asked how it felt,”well it’s like a miniature jack hammer inside your bone, boring through to get that core sample.” In my case a second try was needed to get an adequate specimen. All done, my husband picked me up and we drove home. I still had to wait for the results/diagnosis from the biopsy which would take almost a month. My next hematologist appointment was on January 30th. I was now feeling, my hematologist is a very nice doctor, but if I never had to see him again that would be nice too.
Heading to the Oncology/Infusion Department from the rear hospital parking I pass five of my husband’s photographs from Latin America just twenty feet from their entrance. The waiting area consists of three chairs stuck between tall file cabinets, in a cramped space, not a waiting room exactly more like being tucked into a hall. After I finally sat myself down next to two women without masks and began to get comfortable, a young male nurse called my name and showed me to an examination room. He took my vitals and there I waited in the windowless, artless room for one hour and twenty minutes doing everything I could online, then I stood up and swung my arms to energize, did some Extra Slow Walking and finally another person walked in. To my relief it was the doctor. The good news was they found something, I had a diagnosis; the hematologist said I have MDS. Myelodysplastic Syndromes, “are a group of disorders caused by blood cells that are poorly formed or don't work properly” according to the Mayo Clinic. First off the doctor assured me nothing I’ve done would cause this, that it isn’t genetic, my sons won’t get it or pass it on – I was just unlucky. He went on and explained the various treatments possible if I did nothing and the MDS progressed into Leukemia something that can be managed, but not cured. Then he explained a bone marrow transplant (BMT) can cure MDS and the next step would be to speak with the MDS specialist at MGH, and he assured me that could be done over Zoom.
Later that day I got a call from MGH (Mass General Hospital) asking me to come in for my MDS meeting and meet the Bone Marrow Transplant team! What! Wait a minute, I’m not getting a bone marrow transplant, I have no symptoms, I’m just learning what my options are at the moment. The admin lady said she’d call me back after checking this out. I got my MDS appointment for the following Friday. At least waiting the twenty minutes for this doctor I was home with my two dogs and relaxed at three in the afternoon, looking out over a sunny seascape.
The MDS doctor was kind and explained that even though I have no apparent symptoms I can expect that to change in the next one to two years. I can wait and then have to have chemotherapy or other cancer treatments for leukemia which I would be getting as well as other complications and receive varying treatments over the rest of my life or I can consider a bone marrow transplant (aka stem cell transplant) while I’m healthy and cure the problem. Yes I was shaken, alone in my home, crying when I called to tell my husband, barely able to form the words in my own mouth. So sometime in the next month I will make the trip to Boston, along with my two sons (both willing to be donors), and my husband to meet the Bone Marrow Transplant team.
Last night (Monday, February 10th) I realized I should find my 528mz tuning fork good for DNA repair. This morning I looked up Sanoviv Medical Institute, where a friend who is an acupuncturist spent time last year getting treatments for her self and cancer treatments for her father. BMT is scary, do they offer something similar with more functional medicine support?
A longtime close friend sent my MDS summary to her cousin, a world expert in Stem Cells and Bioethics. He was kind enough to respond. I found a registry that pairs volunteer transplantees with patients who have the same cancer, in the meantime I’ll get to talk to my wedding sermonizer who had a BMT twenty-six years ago. I learned an old friend from where I lived before the Vineyard is going through it now. I’ve adopted the mantra, “I will get through this”, and variations said throughout the day when I feel my chest begin to seize up. It’s time to get up and move. Swing my arms, hum, awaken, enliven, celebrate being here now.
Then I got into a researching frenzy. The greatest integrative care hospitals offer stem cell treatments, but not transplants. I reached out to the Integrative Oncology referrals I got from my Roots & Branches naturopath in Colorado, called our family therapist, spoke to the hematologist’s office to confirm an appointment for next week, heard from the MDS specialist’s office setting me up for preliminary testing before meeting with him and later with one of the doctors from the Bone Marrow Transplant team on Tuesday, March 11th with both my sons and my husband. I made a hospital rate hotel reservation nearby cause it sucks to sit in morning traffic from an inn we like in Cambridge, and I already realized there’s no way I’m driving home after the morning’s events. Maybe we can just eat lunch together and regroup before my husband, Ed and I head back to Providence. I feel lucky that a dog sitter who has stayed with the dogs at our place can hang with them til we get back. Even if the doctors say it’s ok to go to NYC in April, I’m not sure I’d be able to handle the stimulus. There’s time to figure it out.
There’s time, it was suggested this BMT happen in three to six months, now we’re already at two to five months. There’s time to heal and get ready to be cured.
Too much time for madness and sadness, upset and why me, random as can be, symptomless I stand hoping always for the best. The biggest surgeries in my life were a DNC and gum surgery. I have some nerve damage mostly in my right foot, but that’s about it. Writing helps keep me sane, engaging in Deep Listening practices during a three-month course I started at the end of January with the Center for Deep Listening is so grounding and nurturing. The course ends on May 3rd so the BMT could be anytime after that, or push it out to five months from now and that would buy me summer, well July.
Each day the donor list of friends grows, I’m not sure I could do this for someone else. I am honored anyone would do this for me. I called my brother while taking the ferry off-Island, even he volunteered as a donor. I feel cared for, loved and supported by my friends and family – learning to allow myself to really feel these things is healing.​