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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The Last Supper
On Thursday, March 27th we drove from Providence to Boston, where we crawled along the exit for MGH. I let my husband off at the crosswalk off Storrow Drive so he could make his follow-up pacemaker appointment and I spent another forty minutes making my way two blocks on Cambridge Street to Fruit Street. Had it not been for an ambulance in our lane and police directing traffic, that last block to the MGH Fruit Street garage might have taken even longer. I felt lucky to find a spot near the back exit gate, making it a shorter walk to our hotel with both our rolling bags. I was pleasantly surprised our room was ready when I arrived to check-in at 12:30 pm. That evening we celebrated my husband’s birthday at his favorite Afghan restaurant in Cambridge with a couple of friends. For me it felt like the last supper, perhaps the last time I will eat out until post-BMT. We arrived at 5:15 pm. Within an hour I needed to mask up.
Being next to MGH meant I could get the bloodwork needed prior to beginning infusions and pick up one prescription I would start on Sunday as well as two nausea medications at the nearby CVS. The other medication would arrive by mail on Monday on the Vineyard. Friday morning we met my oldest son and his partner at the Boston Museum of Fine Arts to see the Robert Frank exhibit of Mary’s Book. There was even one print my husband had made in the show. My husband left us and we enjoyed the rest of the morning wandering through the Asia collections before enjoying lunch in the high ceilinged cafe. We walked through Northeastern’s campus, the alma mater of my son and his partner, and he showed me all the new buildings. When I left them at the Ruggles Red Line stop I headed to Yawkey 9E for bloodwork and was relieved the waiting room was empty. I was in and out in less than ten minutes. I headed to the CVS, picked up my meds, took a Beacon Hill walk and was back in our hotel room for our scheduled 3 pm Information Session with Barb, the MV Oncology N.P. Although I may not get nausea, Barb made it clear if neither of the prescriptions I had work to get in touch asap because no one wanted me to suffer. She was adamant no one but me was allowed to touch the MGH special pharmacy meds arriving Monday, not the bag, the box, the bottle nor the meds. Also I was instructed to flush twice for 17 days to keep everyone else safe.
On Saturday morning we drove to Andover for the opening of the June Leaf exhibit at the Addison Gallery. My husband would attend the dinner while I opted to pick up my own dinner and stay safe. The exhibit was fantastic, however at the point it felt crowded I excused myself. Later my husband returned to our room at The Andover Inn asking to be driven to the dinner, no address, just a map. The Andover Inn, built in 1930, is located on the property of the Phillips Academy in Andover, MA. The 30-room inn is decorated with original works from the Addison Gallery. The second floor hallway was lined with original Eadward Muybridge photographs. Our room contained a number of photographs from William Bradford’s 1873 book “The Arctic Regions” (see https://archive.org/details/arctic-regions-pdf_202409/page/n59/mode/2up). When I took notice of the images I strongly felt the presence of my friend photographer Rena Bass Forman. I had the good fortune to act as Rena’s personal photo editor for the last twenty years of her life (1954 – 2011). I accompanied her for infusions in Nyack, NY after she had contracted a brain tumor and now it was if she was here to support me as I faced my first week of infusions. At the time of her death she had been planning an expedition to the Arctic based on William Bradford’s expeditions with artists, something her daughter, artist Zaria Forman realized and led in August 2012 along the coast of Greenland. I made a little movie of the images and sent it to her daughters.
I was grateful my husband had enjoyed a night with old friends and new. On Sunday morning, after a yummy breakfast in town we got on the road and headed back to Providence. I realized I needed to leave Providence that same day, rather than return to the Vineyard on Monday morning and go straight to the hospital to begin infusions. When we got home, I changed my ferry, packed and went to pick the dogs up at their sitter before smooth sailing home to the Island.
My younger son was home and able to take me to the hospital for my first day of infusions for MDS starting at noon. I was not sure what to expect. After having my temperature taken and getting on the scale down the hall we were led to the room I’d had both my bone marrow biopsies in, only now there was no longer a hospital bed in the room, just an infusion chair and other wooden seats. I’d packed my lunch, hot water, cold water and some snacks. Once I was set up with fluids, they could order my prescribed infusion from the lab, something that takes about an hour depending on what’s going on. After my infusion arrived, and I had settled in, I let my son go and told him I’d text when I knew I could get picked up. What no one had mentioned to me was going to the bathroom. At this point I was drinking 56-plus ounces and as the clock neared 3 pm I was becoming desperate and realized I’d never make it to the end of my infusion. Finally I rang the red button for a nurse. When I asked if I could use the bathroom, she said “Of course,” unhooked me from the wall, and helped wheel my infusion bag and me into the bathroom. What a relief!!
On day two, my younger son once again drove me to the hospital, but this time I did not need him to wait around. I was still given a bag of fluids prior to my prescribed infusion for MDS. The first day I had not moved my arm for nearly three hours being rather squeamish about needles. Day two I used both my hands, had no qualms about ringing for a nurse if I needed to pee, and generally felt in the swing of things. Day three and beyond I no longer needed an hour of fluids prior to my infusion because I was properly hydrating. In fact I peed at least six times during my visit. When I was young I remember being a bit spooked by my mother’s veins around her wrists and forearms being so articulated. I inherited those veins and for the first time appreciated that they made the whole process of infusions much easier. The only repercussions was a level of exhaustion daily I’could not remember experiencing since my kids were little. Each day required a nap upon returning home, otherwise no side effects to speak of. My son left on Wednesday and returned with his girlfriend on Thursday evening. They could watch the dogs on Friday, so I could take my car in for an inspection just a few days late and then head to the hospital for my last infusion until the second 28-day protocol begins again. After my Friday infusion I had a follow-up appointment with the hematologist who explained my platelet and blood counts would drop then pick up and look better than ever. I wondered why this could not be my treatment. The hematologist explained, “If you were 87 years old this is what I would recommend, however at some point it will fail.”
I was grateful to be allowed to return to Providence and have my next bloodwork the following Wednesday so I could keep my car appointment for it’s 50,000 mile check and recall issue, as well as take care of a host of details. I was so grateful my son and his girlfriend would keep the dogs until my return. My last day in Providence I had a second hot stone massage, before packing and returning to the Vineyard. After disembarking the boat and heading straight to the lab I was lucky the waiting room was empty and a familiar nurse took me right away. When I returned to the waiting room it was half full. The labs were needed for my noon appointment with the visiting Oncology nurse. I met with her and learned my platelet and blood counts dropped, an expected outcome before they’d pick up again. I needed to be extra careful so as not to bump into, or hit anything, there could be no bruising under the skin. Besides wearing a mask indoors in public I should avoid crowds and gatherings in general. So no Friday evening Scrabble game with Cynthia Riggs (my former housemate) and friends at the MV Museum. No problem, I’d rather be safe than sorry. My next labs would come on Monday, again followed by a visit with a nurse.
One of the things I received in the mail when I returned home was a box from the National Marrow Donor Program with a welcome note, resources and a journal. On Thursday evening I finally had the courage to phone the number Barb, the Oncology N.P. had shared with me for an Islander who’d had a BMT 6.5 years earlier. We ended up speaking for nearly forty minutes. His story was way different than mine, but I was grateful to have his support and know I could phone him anytime. The one thing I did learn was that my blood type would change to that of my donor. On Friday afternoon my BMT doctor wrote that he’d spoken to my Island dentist and everything was fine. When I wrote him back I inquired if there had been any donor matches. I was thrilled to hear back from him, “Yes, you have several (more than 5) fully matched donors that we are confirming - you will have no problems getting a fully matched transplant.”
Not a letter to Nora Ephron
(January - February 2025)
Blog No. 1
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.​
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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Blind Date with Tommy Torso
3/21/25
The dogs and I were home alone on the Vineyard. I got up around 5 am, worked on Wordle, Connections and Spelling Bee on my phone, then took a shower and washed my hair. I dressed in leggings, a purple cotton turtleneck and long zip Porto vest. After our breakfasts I took the dogs for a short woods walk, then a quick beach path last call before parking in a near empty Hospital lot Thursday morning. I was on time, 8:30am in Oncology/Infusion, a wing I’m adjusting to, in fact I feel a veil of pain over my heart just typing those words synonymous with cancer. Feeling like I had a little c, but MDS once a pre-cancer is now a big C, full guns and no roses for the cell-less.
I thought my blood pressure would be high, but it was lower than all my previous visits. They take your temperature before you even leave the reception area. I was led back to Room 2 (not the examination room which also happens to be Room 2), a corner with a window facing the back parking area. If I’d parked there I’d be able to see the dogs. To even things out I decided Barb, the NP, should do my right iliac this round. I got comfortable on my stomach and so it began. Bone marrow biopsy number two. This time the core sample was easy but the aspiration took three tries and had just enough to make a sample, while leaving me with a zingy feeling from the right iliac to my sitz bone. Eleven minutes that felt like a lifetime. But when it’s over, that’s it, forgettaboutit. It made me remember how the pain of childbirth melted away with my newborn son being laid on my chest. A life that beat within, the symbiosis of vibration and connection calming both of us. Once it’s over and done, well I did much better the second round. The thought of having a second or third pass nauseated me after the first biopsy, it had me feeling tense and fragile. I am grateful for the information that can be gleaned from this procedure though emotionally exhausted. Physically I was fine in a few hours.
How soon I want to block that whole visit out of my mind. Following the procedure you have to turn over and lay on your back to put pressure on the area of the incision for thirty minutes before you can leave. As the nurse and the NP organized my specimens and took care of the administrative details., I mentioned my need to make peace with a catheter and how queasy needles still make me feel. That’s when they recommended a port versus a pic. The next thing the nurse asks is, “Do you want to see Tommy Torso?” or perhaps she said Chevy Chest. Yes my mouth dropped open, not sure how to reply except “What?” Tommy is definitely not date material, but softens the shock of what a port looks like, where it is inserted, how it operates. A one-inch flap of silicone skin peels back and I’m thinking about how I barely have skin over the area shown thanks to gravity and my well-endowed chest. I’ve already had enough of Tommy Torso, that’s right no head, no eyes boring into me, and nothing below the ribs. I don’t remember the rest of the day clearly, except taking my dogs to the dog park after I was done, before stopping in West Tisbury for the mail on the way home.
It was a relief to go slow on Friday morning and not teach my two Rev6 Vitality classes. My younger son arrived that night. I was one of 400-plus-around-the-world-Zoomers tuned into healer Rob Wergin’s 3-day Sedona, AZ retreat. It nurtured me deeply helping shift once again, from threads of fear still pulling on my heart to letting go and being present in acceptance. Saturday morning after feeding the dogs and a sunrise beach walk I climbed back on my bed for a live distance Reiki session with healer Jamie Butler who had missed one weekday morning (of our 21-day Reiki healing) due to a stomach bug. Following that grounding session was my Deep Listening Movement class from 11 am to 1 pm and then the rest of the day connected me to Sedona. The movement class has been so much fun each week – the time we have together is so inspiring – though hard to really connect as a community. I can drop in to our shared folders and peek, listen, experience other’s offerings, though just 21 of us, we are all around the globe, yet there’s even one classmate who resides in Providence and has even performed in our Sutton Street carriage house (before it was ours).
3/26/25
I was in the Waterman Street Dog Park in Providence when Barb, the Oncology NP from MV Hospital phoned. In ten minutes I learned I would be starting chemo both infusions and orally the following Monday. Infusions would take about an hour, however I should plan to be in the hospital for about two-and-a-half to three hours, though the infusion nurse who phoned the next day said it would be more like three to three-and-a-half hours. Barb explained, the infusions will take place daily for five days and the oral part takes 14 days and after 28 days I will repeat the same protocol of infusions and oral meds. Each a 28-day cycle to prevent my MDS turning into leukemia. She scheduled an education session for Friday at 3 pm via Zoom. Since we would be in Boston for my husband’s pacemaker follow-up I wondered if I could pick up the meds at the MGH pharmacy. In fact all cancer meds are mailed Fedex only. That night I got a call from the MGH pharmacist to get info where to mail my meds as well as offering a payment plan should I need it, since the co-pay would be $1000. ​​​​​​