Tuesday: drove to Boston while fasting since the morning. Had bone marrow biopsy with conscious sedation. Highly recommend the conscious sedation for this procedure.
Wednesday: fasted in the morning for a PET scan. In the waiting room for the PET scan received a call from the research nurse that neither the study nor my insurance would pay for the PET. A few hours later, they called and said insurance would pay for a full body MRI that afternoon. Later that afternoon they canceled the MRI and got the approval from the study for the PET.
Thursday (tomorrow): I have my line placed at 12:00 and the PET scan at 3:30. No food for me! I have to fast from 6 am to 6 pm.
The schedule has been changing minute by minute since I arrived. Hard to complain, they’re doing the best they can, and having several people calling to keep me updated.
All that said, the working title for this post was SNAFU – Situation Normal: All Fucked Up.
If only things were so simple as the title of this post. But, dear reader, never fear – all is well.
I drove to Boston at 5:00 am on Monday morning, December 7th. I valet parked my car and left my suitcase with the front desk. And then I walked the mile to Dana Farber.
Then I walked the maze that is the Dana Fraber/Brigham & Women’s complex, all inside in overhead walkways. They schedule you to arrive at 9 am for a 10:30 procedure. Tending toward the prompt side, I had a long wait in the waiting room.
When I got down to the pre/post op area the nurse started running through her questions. She noted that I had told them I would Uber back to the hotel. She then asked me who would be staying with me? “No one.” “You are having conscious sedation, you need someone with you for 12 hours.” Of course, this would have been good to know when I had the lengthy pre-op discussion on Thursday night!! Oy. They landed on giving me less sedation. And they did, and I was fine.
The next day I arrived at the Kraft Family Dlood Donor Center where they do the apheresis. Yes, that Kraft, the whole place is strewn with Patriots memorabilia! I had a visit from one of the research nurses, she told me I might want to stay over night because some people get tired from the aphaeresis. Do these people not know that I am a planner and need all of this information up front?!?! Anyway, a mere five and a half hours later and the apheresis was complete. I loved my nurse who sat with me for most of those hours. I asked a lot of questions, he was very informative and had good advice. He also had a lot to say about the ways politics and medicine come to play. He kept pointing doing the street and referencing “Cambridge”.
Then I headed back to have the line removed, which was inconsequential, other than the slight discomfort of laying down flat on your back with your head below your heart for 30 minutes.
Next up was a special bonus visit, back up to the multiple myeloma clinic for an Xgeva shot because my calcium was elevated (12.9). And then the drive home, which did not include any traffic even though I left a little after 4 pm. I always like to point out whatever little upside there is to this pandemic – no outbound traffic on a Monday night in Boston!
Wednesday morning I started my bridging therapy at Smilow. And because my hemoglobin was low (7.9) I needed to get a blood transfusion.
I felt pretty terrible on Thursday and Friday, probably the worst I have felt since the stem cell transplant. Very out of breath and oh so tired. Saturday I went into Smilow as scheduled for a neupogen (zarzio) injection to make sure my white blood count doesn’t go too low. Now, get your score cards out: my hemoglobin was down to 7.7, and on the bright side my calcium was almost normal at 10.3. So, another blood transfusion. Four and a half hours there.
Bridging therapy: December 9 (done), December 16 and 23 (all Smilow) Arrive in Boston: for the next phase of the overall CAR-T Cel therapy: January 13
I will stay in Boston from that date until 21 days after I receive the cells back (Day 0)(approximately January 20). However, they have warned that these dates are NOT set in stone and even mentioned that Dr. Munshi might want me to stay in Boston until 28 days after Day 0.
So much has happened since early July, I was waiting to blog until I felt I could write about my brother’s passing. But, as it turns out, I just can’t. You can read Roger’s obituary.
On July 26th my son, Kyle, had a serious leg injury from a “tubing” accident. A boat sped by them too fast and too close which caused a large wake as they were nearing the boat they were tubing from, flipping my (large) son, his girlfriend and her two younger siblings into the air. Only Kyle was injured, catching his calf on a cleat on the side of the boat. It was a deep, wide, ugly, nasty, gash. I will not post photos here (they are not for the faint of heart). They rushed him to a nearby hospital where they decided to sew him up – only for him to get an infection two days later, sending him to the hospital for emergency surgery, where they thought he might have flesh eating bacteria.
It is very long story with a total of 3 surgeries, lengthy hospital stays, a skin graft, tremendous care from his girlfriend, Andreah, and many, many ups and downs. But 7 weeks later he was able to go back to work. He has no limp, it looks “pretty good” considering, and he hopes to get back to the gym soon.
Not the 2nd Inning Anymore(the continuation of my relapse)
I started the daratumumab/pomalyst/dexamethasone (although the first cycle on pomalyst, Smilow wasn’t sure about it because of my low blood counts – not “cancer counts” but CBC etc.) on June 18.
On July 1, my “cancer numbers” had increased 24 fold (24 times what they had been) – boom! Followed by a 37% increase, etc., etc. One evening, a week after my brother died, leaving my son in the hospital after one of his surgeries, I received a call from my Smilow oncologist, Dr. Stuart Seropian. He said we needed to start thinking about other therapies. He had lots of suggestions that I listened to walking through the parking garage and driving home, but not really able to take any of them. He wanted to know what Dana Farber thought, I did too.
For the first time, I had a hard time reaching anyone at Dana Farber, or getting a return call back. It felt like a long time, but as I look back at my online patient portal it was less than two weeks. I finally spoke to Tina (APRN) on August 10th while on vacation with my family in Maine. She said all of the symptoms I was experiencing (oh yeah, I wasn’t feeling really terrific, out of breath, headaches, tired, some low grade fevers) was because of the myeloma. She said she would confirm with Dr. Munshi but thought we would switch to Krypolis (carfilzomib), Cytoxan (cyclophosphamide), and dexamethasone, which is indeed what I started on August 17th. She also told me how sorry she was “that it came back”.
The new regimen is given 3 weeks on and one week off, the Krypolis and Cytoxan are given by infusion. The dexamethasone is a pill, and is every week. The Cytoxan is more like “real chemo” as opposed to the other regimens I have been on where there were basically no side effects. I am tired, a little nauseous (managed with a couple of anti-nausea meds), and my blood counts are taking a beating (ANC, so I am very immunocompromised and need Zarxio injections to get my neutrophils up; hemoglobin, so I am pretty anemic, headaches, tired, out of breath walking up the stairs, etc.; and platelets, so I bruise easily).
After a little mix up I found out that Dana Farber only wants me to get the Cytoxan on week 1 and 2, which is what we are doing now, and I think it will give me two good weeks out of 4 which sounds really good at this point. And even better news is that my meloma numbers are dropping:
Kappa Free Light Chains
Percentage change from start of treatment
As a reference, the kappa free light chains should be around 1-2.
The evening after my 3rd dose of Krypolis and Cytoxan I went to bed with chills. When you are getting chemotherapy that can lower your blood counts you are told to call if you get a temperature of 104° or greater. Around 9:00 pm I called as my fever rose above the limit and they wanted me to come in. Smilow has an Oncology Extended Care Clinic (ECC) so oncology patients don’t have to go to the Emergency Department and fortunately it was still open and had a bed for me.
When you go to the hospital with a neutropenic fever (I have my own personal experience with these and the experience of my first husband, Ken’s, as well). They culture and test you for every possible type of infection. And during the pandemic, a COVID-19 test is also part of that. And typically they don’t find anything but treat you with broad spectrum antibiotics anyway. This was the case for me, I was admitted and treated with several IV antibiotics. They also managed some of my treatment side effects. I was in the hospital for 3 days, and eventually they did find a little bit of pneumonia in the lower right lung. I had no symptoms of pneumonia and finally got home (after working in the hospital for a couple of days).
The next time I had treatment (2 weeks later as there was a week off in between) I again got a fever. I did not call Smilow. I was a bad girl. I just really, really didn’t want to be admitted to the hospital again. I monitored the fever, it went as high as 102.8°. But then it did come down and I was fever-free by morning. I “told on” myself at my next appointment and was advised that I really needed to call, which I agreed I would. That night (after treatment that day), again, I got chills, and again the fever went over 100.4°. I called right away. My APRN, Alfredo called me back. I told him I really didn’t want to be admitted, but I would come in for all the cultures, swabs, etc. He checked the ECC and they were full with no beds. He agreed that I could stay home and call him in the morning, and not take any Tylenol the following day so we could make sure the fever was gone. And it was. I continue to get a fever the night of the day of treatment, apparently it is just part of my body’s response to the Krypolis.
I’ll continue with this treatment. I’ll remain immunocompromised in the middle of a global pandemic. I closely watch our local state COVID-19 numbers, and the trend is not great. It is going to be a long winter. If I am playing the “pollyanna glad game”, quarantine during the pandemic does allow me to rest without pushing myself to engage in fun, active social activities, it’s the perfect excuse to lay on the couch after a long day of work.
I don’t actually know what the “plan” is. I go to Dana Farber in person for the first time in a long time on November 19th. Dr. Munshi (who is the myeloma leader for the CAR-T Cell Therapy program at Dana Farber) has put me on the list for their CAR-T cell therapy, it is still a trial but he expects approval around the end of the year. If I relapse again, that seems to be the next step, possibly with DCEP therapy (had DCEP pre stem cell treatment) prior to the CAR-T cell therapy, because my myeloma is a tough mother-fucker. But you know what, so am I.
Back in December of 2018, I shared my brothers soft tissue sarcoma diagnosis and his impending surgery. I have not shared anything else about him since then. Subconsciously I may have been waiting to share some good news. And for my brother, over the last 18 months, there really hasn’t been any good news.
His surgery in January 2019 was successful, they saved his leg, he did physical therapy, he was recovering. And then he had his first post-operative scan in April. And it was the worst news. Correction, it felt like the worst news at the time. His cancer had metastasized to his lungs. He had been told early in his diagnosis that if this were to happen it would certainly be fatal. So, this was terrible news. He had not yet fully recovered from the very complex surgery on his leg and now he was facing more. No time to relish a few good months. Back at the fight, the struggle, the doctors, the chemotherapy, the tests, the drives to New York, and yes, another surgery, actually two.
One successful lung surgery, more healing, no chemo while healing, more scans. Second surgery scheduled, feeling a little hopeful, until the post-op call – there were too many tumors to be able to successfully operate. Hearing this, it’s the worst news ever. How can it keep being the worst news ever?
More chemo. He adjusts his goals, but does hold on to some hope. Some immunotherapy treatment. But more unexpected visits to the hospital. Strange occurrences, things that should not happen (“We’ve never seen that before.”), and not in a good way.
And then what surely must be the worst news ever, the worst. There are no more treatments. There are only an unknown number of weeks to live. There is a range, but it is not a very wide range. Not nearly wide enough, not even for his shrinking goals and hopes.
But, my brother is not his cancer. My brother is a giant of a man, in stature and in heart – loved by multitudes, adored by many.
He loves to make people laugh, dare I say he lives to make people laugh. He is not a jokester – he is witty and funny. But mostly, he is kind.
His sisters can be cranky, outraged and at our worst maybe, even spiteful (not that we would ever act upon it, but oh, we will talk about it). And my brother, he listens. And he always, ALWAYS, gives the positive spin, sees the bright side, the kinder, gentler way. We will not be the same without him.
I can’t bear the thought of him not being here. I already feel lost. Everything feels useless, unimportant.
And I know, all too well, the worst news is yet to come.
I haven’t been blogging in a while. Sometimes that means there isn’t much to say. In this case, I had things to say but they weren’t mine to say.
In April of this year, my younger brother Roger, started on the path to discovering the growing lump in his leg was a large soft tissue sarcoma. After fits and starts he found a great team of doctors at Memorial Sloan Kettering Cancer Center in NYC. He endured some very rough chemotherapy and then 5 weeks of radiation. On January 11th a team of surgeons will remove the tumor along with most of his quadricep muscle, they will shift nerves, blood vessels, and other muscles, and replace his femur with a metal rod.
To say he has endured all of this graciously is a huge understatement. HIs wife, Hope, has been his rock. We do what we can, mostly cheering from the sidelines as they are pretty self-sufficient. He posted on Facebook earlier this month, publicly sharing his journey:
I am not sure how we became “the cancer family” and yet here we are. On the upside, he is constantly being told how well he handles everything, how good he looks, how resilient he is (much like I was told during my stem cell transplant and recovery) – so there is that. We are tough, we are strong, we stay positive. We are surrounded by many who love us. And we hold each other close.
The photo is the three of us (my sister, myself and my brother). We pose and my brother says “Stick your tumor out!” and then after we settle down my sister says “Smile if you don’t have cancer!” Honestly, I almost peed my pants.
So we will laugh together, and cry in private. We will be strong, and be strong for each other. And our love will hold us up.
So, putting things in perspective I was officially diagnosed with multiple myeloma on May 5, 2014, rounding the corner to four years ago. (I only know this because I looked it up today.) I have been on maintenance therapy, post-stem cell transplant, for two and a quarter years (per Dr. Munshi, last week). I feel good. I am completely a symptomatic. My numbers look good.
And last week, Dr. Munshi told me I don’t have to go back to Dana Farber for SIX months – woot! No quarterly visits. Bonus!
I’ve come a long way thanks to the miracle of modern science. But it’s not entirely a miracle – it is brilliant minds working hard and funding from people like you and me. As I am approaching the 2 year anniversary of my stem cell transplant I am feeling the need to give back. To raise money and awareness for those who have gone behind me and for the struggles (selfishly) that I will face down the road.
I am putting together a team to in the Multiple Myeloma Research Foundation (MMRF) Team for Cures 5K Walk/Run. And I invite you to join me on June 11th in New Canaan or to make a small donation to help fund the research in hopes that some day there will be a cure for multiple myeloma.
I share the photo above, which I lovingly call “Cancer on the Beach”, remembering the stem cell transplant, not how hard it was – but how amazing it was.
During my visit to Dana Farber yesterday Dr. Munshi determined what is next for me. I will start with 2 cycles of RVD (revlimid, velcade and dexamethasone) for my consolidation therapy. This is the same chemotherapy I started with back in January 2015. I will get velcade injections and dexamethasone twice a week, two weeks on and one week off, with revlimid (pill) every day for the two weeks on. For my maintenance therapy he is recommending velcade (injections every other week) and revlimid (I am not clear on how often, I know it is a lower dose). The maintenance therapy is ongoing, as long as it keeps working and I do not experience adverse side effects.
They ran blood work, including the serum electropheresis which shows my M-spike, a key multiple myeloma indicator, the results of which are not in yet. Smilow ran it a few weeks ago and it was down to 0.8, which is good, but not 0. Dr. Muhshi and Tina Flaherty (the APRN) said that the melphalan (the chemotherapy I had prior to the rescue stem cell transplant) keeps working for 6 months sometimes even longer, that and the consolidation therapy should help to push that number down further. They also told stories of patients who never get to 0 but hover under 1 for years and years.
So that’s where I stand and what I will be doing. I’m slowly remembering what the treatment was like for me last winter. Not terrible, not fabulous. Some sleepless nights, some tired days after sleepless nights, feeling a little bit off, constipation, some queasiness, some shakiness and then feeling normal again on the week off. And it’s only 2 cycles. I got this.
Lisa took me to Boston yesterday and we laughed and giggled our way through. When we were waiting in the exam room I was explaining and demonstrating how lunges were still hard for me, and it’s all about the balance and how I need to look ahead at something stationary. I was looking at her, so of course she proceeded to waive her arms and move all around. All this while Dr. Munshi and Tina happened to be walking by the room on their way to another patient. Apparently, we were a bit loud, they said “We’ll join the party in a minute.” They mentioned later it sounded like we had 10 people in the room – nope, just me and Lisa! It was actually a fun trip. And I wore the mask and gloves for the last time when we were in the clinic, which I whined about. Lisa got a big kick out of this, ‘After all you’ve been through without a complaint, this you’re whining about?” Everyone has their limits 🙂
I thought I was past the point where my hair would start to fall out. Then on Friday morning I took my bun down for a minute and pulled my hand through my hair and found myself holding a lot more hair in my hand afterwards than I expected, a lot more. A few more times of running my hand over the pony tail – same result. So, I knew my hair would at least be thinning.
Friday night at home I realized I hadn’t checked again. Bun down, fingers threw my hair, and pretty big sections of hair, not exactly sections but thicker than strands came out. And over and over again, basically every time I did it. I checked again before I went to bed, same thing. However, I have soooooo much hair it wasn’t really making a difference in how it looked.
I cried a little. Not scared or angry, just sort of saying goodbye to my hair. At half an inch a month it will take a very long time to get my hair to be long again, at least two years. During the day today my hair has gotten shorter and shorter (the long hairs seem to be in the lead in departing my head) and thinner and thinner. Before this day is out I am going to shave my head. I have my wig and now two buffs. So I am as prepared as I can be.
This also makes me feel more like a cancer patient. I am often told by nurses and doctors how good I look. And for the most part I feel really good too. But, this is the beginning of everything being quite a bit different. I will look different. When I have the stem cell transplant I likely won’t feel that well. And all the restrictions post-transplant will change just about everything I do.