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.
It feels like I haven’t blogged about multiple myeloma in a while…
It started with a pain on the side of my upper chest on April 16th, which grew worse day by day, until it hurt to take a breath. My first thought was breast cancer (I don’t know why. I’m a little over due for a mammo?). Then I thought I had COVID-19, you know you read a symptom “tightness in your chest” – but when the rubber hits the road what does that mean?!? I called Smilow and they said to call back if it got worse.
It hurt to lift my arm. It hurt to lay in bed. It hurt to take a breath. It hurt. But, I was already scheduled to g in for treatment on Thursday, so I waited. And it got worse.
So there’s a lot of blah, blah, blah between then and now that goes something like this:
X-ray = broken rib, maybe indication of bone lesion.
PET scan, full body = single bone lesion on the left rib where the break is.
Conversations with Dr. Seropian at Smilow = change in treatment? radiation? what does Dana Farber think?
Video visit with Dr. Munshi = (I love Dr. Munshi, have I mentioned that? I love him so much I may be in love with him.) Orders a bone marrow biopsy, unusual that it’s just one lesion, my numbers are creeping up but not too dramatically.
Bone marrow biopsy = (Have I mentioned that I hate them? Well, I do, they hurt. They stick a needle into the bone of your hip to remove marrow and they take a bone sample.) It was a bit of a shit show, after the APRN telling me I should not feel any pain down the back of my leg, I got pain down the back of my leg. And then he had to call in someone else to do it. She struggled a bit, I had my earbuds in with very loud music so I couldn’t hear it all, at one point she said “Maybe this needle isn’t sharp enough.” Nice. And then I got pain down the front of my leg. Afterwards she said I have very hard bones, whatever.
Almost 2 weeks for bone marrow biopsy results = Change in treatment, the myeloma is back. Relapse.
Relapse. “Some people stay with this regimen for 20 years.” That is not going to be me.
But, this is not tragic. There are many, many treatments for multiple myeloma. Everyone’s path is different. I have a friend who was diagnosed 12 years ago, had a stem cell transplant 11 years ago, but that only held for several months, relapse. But since then he has been on the same regimen, without another relapse.
It is also not great news. I am back to being a full on patient.
My new “regimen” is daratumumab/pomalyst/dexamethasone (although the pomalyst might be up in the air, it is similar to revlimid which my blood counts struggled with, doctors are discussing, we will see). Daratumumab (aka Darzalex, Dara) is a targeted monoclonal antibody. It binds to CD38, a protein found on myeloma cells (this protein is also found on other cells, such as red blood cells). It is thought to slow myeloma cell growth in several ways, including by helping the immune system to seek and destroy myeloma cells. It is not a chemotherapy, it is an immunotherapy. The side effects are similar to ones from my previous treatment regimen. I did not enjoy taking dexamethasone when I was first treated, we’ll see how I do with it this time.
The greatest risk is an infusion reaction. So they give it to you very slowly in the beginning. They pre-medicate you with 50 mg of Benadryl, Tylenol, Singulair, and the dexamethasone and wait 30 minutes. I had my first infusion yesterday and made it through with flying colors, no reaction at all, so they anticipate that I will not have one. The administer half of it each in back-to-back days, so I go back today for the second half. I was there yesterday for 6.5 hours, the infusion takes 4 hours and then you have to wait 30 minutes to make sure you are stable.
Next Thursday the infusion will only take 90 minutes (which means at least 2.5 hours) and that’s what it will be going forward. The schedule is once a week for 8 weeks, every other week for 3 or 4 months and then monthly. So, monthly will be good, I’ve been going every other week for 5 years.
At my last appointment at Dana Farber in January, Tina Flaherty, my APRN, was talking about all the treatments coming down the pike and then said, “But you don’t have to worry about that, you’re only in the first inning.” So now, I guess I’m in the 2nd inning.
Awake before 2:45 am alarm (Scot was already up for over an hour). Showered and hit the road right on time at 3:30 am. Chose to take the Merritt Parkway, which turned out to be a mistake as a dense layer of fog covered the windy unlit highway. So, just an added ounce or two of pressure on a fun-filled morning!
We arrived right on time at 5:00 am, just when the valet parking opened, went through security, had our passes printed, and then it was up to admissions on the 3rd floor. We were met there to be taken for my pre-op MRI. I suppose I was fairly relaxed as I fell asleep twice during the MRI!
Typical pre-op meetings and questions: nurse, neurosurgery resident, anesthesiologist, and surgeon (Dr. Sisti). Then at 7:30 am, pretty much right on time, I kiss Scot goodbye (the nurse takes his cell phone number and tells him when he should expect to hear reports, etc.) and they walk me down the hallway into the operating room. Along the way they realize they have not given me a cap for my hair, so as we walk I am trying to stuff my gigantic mass of hair into one of these caps. (I realize now that they probably took it off almost right away, so what was the point?)
I lay down on the table, they tell me they will give me something to relax, adjust pillows and put an oxygen mask over my face and tell me to take deep breaths and I’m out.
I now know that part of the pre-surgical prep included stapling the surgical drape – to my scalp! And pinning my hair back, also with staples into my scalp. So strange to think that stapling things to your head is the way they do that!
At approximately 1:30 pm Dr. Sisti came to the family waiting area to report to Scot that the surgery was successful, they removed the tumor, one of my olfactory nerves was totally crushed, the other one was slightly pushed to the side and that it was very close to my optic nerves.
Waking up in recovery, I suppose is what one might expect post-brain surgery: pain and nausea. Scot just told me the other day that I looked at him and said, “Whose idea was this?”
Visiting rules in Neuro ICU are quite strict, a 30 minute visit every 2 hours. And I would say with good reason. Attempting to engage with a visitor while in intense pain and being extremely nauseous is quite difficult and not helpful. You know what is helpful? Pain meds and and anti-nausea meds which induce sleep. Sleep is very helpful. Not being awake – very helpful. Dilaudid, fentanyl, and zofran were my friends. And the nurses. The nurses were amazing.
Sarah and Scot made the call to keep visitors to the hospital to just family. Definitely wise.
Wednesday, February 6th
The next morning the surgical resident, Dr. Smith, came to visit me, ran me through the neuro tests (this happened many, many times a day during my hospital stay): shining a light in my eyes, follow the fingers, how many fingers here, how many fingers there, how many fingers here, lift your feet up, push against my hands, pull my hands, etc. He left but came back a few minutes later with one more thing: had I smelled coffee yet? I had not. Did I have coffee? Well, I did have a cup of instant Maxwell House they had given me (I was thinking perhaps some of the nausea and headache was caffeine withdrawal, at this point I was 2 days with no caffeine, far from my normal), but I told him it was disgusting and does not really smell like coffee under normal circumstances. However, he was holding a Starbucks cup, so I asked if I could smell his coffee. He kindly complied – and I could smell it – success! Olfactory senses intact!
The next big event was getting moved out of Neuro ICU. Unfortunately, there were not any rooms available. They moved 6 of us to another floor, but not to regular rooms. The increased nausea while physically moving on the gurney was unpleasant, like seasickness, I had to close my eyes.
My first visitors on Wednesday were Kyle and Andreah. Poor things couldn’t find me since the hospital didn’t have an updated record of my location. Somehow they found a helpful person who not only knew where I was but personally escorted them to me. I am afraid I was not really any more exciting to visit Wednesday morning than I was Tuesday post-op. They sweetly kept telling me not to try to stay awake. I think their visit ended with me vomiting. Good times.
Here I am Wednesday morning in my fancy turban. I have to say part of me liked the look – wide turban with curly mop sticking out of the top!
I’m not exactly sure what the blister on my upper lip was from, assuming the intubation.
Next visitors were my mom and sister Kirsten. They were NOT happy with my situation, still on a gurney with my feet hanging over the end of it, and not in a room. They immediately took action, making phone calls, finding people, I don’t even know what they did. First, the hospital was able to scrounge up an actual hospital bed for me, one where my feet did not hang off the end. I had not realized how much I was missing being able to control the angle and positioning of the bed. Laying only on your back is not comfortable, and requires a lot of adjusting. When I was on the gurney I had to ask the nurse to adjust the back for me.
Nausea and pain continued pretty consistently on Wednesday. The nursing staff alternately thought the nausea/vomiting was a reaction to the anesthesia, or from the opioid pain killers. I suppose we’ll never know which it was.
Shortly after my mom and sister left, they moved me up to a semi-private room where I was immediately assaulted with a wall of tv screens, mine and my neighbors, with both volumes up. I had not realized how I was enjoying the lack of stimuli. Sadly, my roommate had been in the hospital for a month post-stroke. She was somewhat non-compliant and a fall risk as she often tried to get out of bed on her own. It turned out that she had a one-on-one aide to make sure she didn’t do that. This added further to the commotion/noise as the aide watched tv all night, snacked and had visitors herself.
Sarah in the meantime had been keeping watch and managing things via phone from home, talking to nurses and eventually Dr. Sisti late in the day on Wednesday when she called the nurses’ station and he happen to be in the room with me. When she expressed concern about the pain he told her it was likely from the pressure bandage, they agreed that he would loosen it, if I got a black eye, so be it. He cut it a bit to loosen it but left it on. I don’t recall if I had immediate relief but I can tell you that on Thursday I finally felt a little bit human.
Another interesting thing Dr. Sisti said to me when he asked me how I felt and I said “meh”, he asked, “Do you feel like you had major brain surgery? Be cause you did!” I feel that up until that moment he had somewhat downplayed the surgery.
Thursday, February 7th
Thursday my dad and Andrea came for a visit, and I was happy to have some company that I could finally engage with – I think I might have even been up in a chair! They also came with a bag of candy which was also good timing as I finally felt like I could eat something.
Sarah also decided that she was tired of being long distance and took the day off of work on Thursday to come a little earlier than planned. (To complicate this, Kensley got sick with a fever and Andreah saved the day and came to East Haven to babysit! It turned out that poor Kensely had a double ear infection and the flu.)
Also Thursday morning, the surgical resident removed the bandage completely and I had my first look at my staples/surgical site. (See title of blog above.) I was a little surprised to see the staples beyond my hairline, somehow I had the impression that everything would be back behind the hairline.
Also note the lovely neosporin hair gel (blech!). I would not be allowed to wash my hair until I got home.
Sarah arrived and got to know the goings on of my roommate and her husband as well as I did. I suppose it was entertaining if nothing else! It was good to have her company, but I was also glad she had the chance to hang out with her cousins for dinner and an overnight.
Heading home, Friday, February 8th:
Sarah’s training as my daughter really came into play when she asked a few key questions, at the right time, of the right people to get me discharged and us on the road by 12:30 pm on Friday!
I was finally able to get a good look at the surgical area after washing my hair on Saturday.
Home life these last two weeks has been pretty boring: resting, Tylenol, daily walk, more resting, thinking about updating the blog, being too tired to update the blog, rinse, repeat.
Had the staples removed at Dr. Sist’s office last Thursday, February 14th. He advised me that the meningioma is determined to be a grade II meningioma because of the “microscopic foci of brain invasion”. What this means to me mostly is that the follow-up (MRI) starts in 3 months instead of 6 months.
Most difficult limitations are not being able to drive and not being able to lift more than 10 pounds. The 10 pounds comes into play mostly in that I can’t pick up Kensley, finding all kinds of work arounds without actually telling her that I can’t pick her up! And I guess the wound is not very noticeable since Kensley has not mentioned it – and she misses nothing!
In the meantime, I started back in with my multiple myeloma treatment last week. Monday, I have my semi-annual appointment at Dana Farber and Thursday it’s back to New York Presbyterian for my post-op release from Dr. Sisti and treatment at Smilow. And then Monday the 4th, if all goes as planned I’ll be back at work.
The love and support from far and wide has been heartwarming and healing: visits, flowers, cards, texts, emails, Idaho breakfasts (!), all of it. Thank you one and all.
Spent some time with Sarah, Kensley, and Minka at a park yesterday afternoon. Tons of texts and calls from family and friends far and near wishing me well, sending prayers and good vibes. And Pepe’s pepperoni pizza with my guy for dinner!
5:00am MRI and 7:30am surgery at New Yprk Presbyterian Hospital-Columbia University.
My brother Roger is recovering remarkably well. He will come home from the hospital tomorrow. He was quickly getting out of bed on his own and walking with a walker. And as of this morning, 3 days post-surgery, he is only taking Tylenol for pain (what?!?). He comes home tomorrow. He has a long road ahead of him, 8 weeks immobilized and then he starts 5 day a week physical therapy to reteach his reconstructed and a bit less muscular leg to balance and walk. Thank you everyone for your love, prayers and support.
As it turns out, on the day my brother received his date for surgery I also received mine. On November 19th I had my MRI on my meningioma. It had been two years, in 2016 my annual MRI showed no progression so it was safe to wait two years this time. I received the MRI results in my patient portal account (MyChart). And it wasn’t anything dramatic, per se:
Subfrontal meningioma with extension into the bilateral olfactory groove regions currently measures 33 x 31 mm which is slightly enlarged from prior exams including 32 x 28 mm on 8/15/2016 and 27 x 26 mm on 4/28/2014. Coronal diameter of 25 mm is unchanged from 8/15/2016 and slightly increased from 21 mm on 4/28/2014. Mild focal edema signal adjacent to the posterior superior right aspect of the mass is unchanged from 8/13/2015 although with progression since 4/28/2014. Slight edema signal at the left superior lateral aspect represents slight progression.
But even to the untrained eye (I have lots of experience but zero training), I was pretty sure my neurosurgeon was going to want to take it out this time. It hadn’t grown a lot, but it had grown, and as I like to say, “It isn’t ‘not growing’.” And as you can see it is not small, it is golf ball size.
By the time I went to my appointment with Dr. Michael Sisti at Columbia Presbyterian on December 6th I was so prepared for the news that I literally didn’t bat an eye. I did ask him if I could take a photo of his screen with my MRI on it. I told him how I always tell my friends, “You can’t miss the tumor, you can see it from across the room.” He said, “If your friends can’t see this tumor, you need new friends!” So my friends – there it is.
I had a few questions in regard to scheduling the surgery:
How long do I need to be out of work? About one month.
How long will I be “disfigured”? Not long, worst case scenario a really bad black eye on one side.
We had a trip to Florida planned for January 25th, visiting family and friends, coming home on Super Bowl Sunday. He operates on Tuesdays and Wednesdays, so Tuesday, February 5th it is.
I just re-listened to the recording I took of my appointment with Dr. Sisti (which as it turns out was the only time I will see him prior to my surgery). Here are some of the details:
Type 1 meningioma
My tumor is taking the well-known super slow growing, benign, natural history of this disease
In a neurologically non-critical location
Pressing on one of my two olfactory nerves
A year or two away from pressing on my optic nerve
It is too large for non-surgical treatments
He described the surgery as “nothing you’d ever really want to have”. His preference is to come in from the right side, the non-communication hemisphere. He makes an incision behind my hairline, where a plastic surgeon would make the incision for a facelift (no, I can not throw a facelift in, I asked!). And no, he does not shave my head (so there’s that!). He then “reflects the scalp down” – this is a very gentle way of saying he is going to peel my forehead down (yummy).
Then they use a computer, to make a minimum access opening that looks like a half-moon above my eye. He joked “Although there’s nothing really minimal when it’s your skull and someone is opening it!” No, indeed. They glue the bone back in with bone cement when they are done and he said I won’t even be able to feel a bump or line once it has healed.
He will be doing a surgical resection of the tumor. Although if he has a choice between “normal life or normal scan” he will choose normal life, which in this case means saving my sense of smell. If he had to he might leave a small portion in rather than nicking my olfactory nerve. It is “not a particularly painful surgery”, side effects include soreness, headache, a feeling of disconnection, and a feeling that someone “beat the hell out of you”.
After surgery I will be on an anti-convulsive medication and steroids. The steroids are necessary because my brain will literally fill the void left from the removal of the tumor, which is a shock to the brain. And for what ever reason, the thought of my brain moving in to fill that space makes me really nauseous!
I will spend the first night in the Neuro ICU and then be moved to a semi-private room for likely 2 more nights, but they don’t rush you out, you need to be functioning independently.
They will know the morning after the surgery if I have maintained my sense of smell, “Smell a cup of coffee? We’re good. Can’t smell a cup of coffee, we’re not so good.”
They will do five years of monitoring (MRI scans) to check for local recurrence or new meningiomas (he does not expect new ones, since I have had just the one for what he imagines is well over a decade). If surveillance picked up a new one it would be treated non-surgically. So just this one surgery, thats the plan!
Things to remember: it’s not like it’s brain surgery – although they open your skull and they worry about effects on your brain – they are not operating on your brain. And secondly, I’m not just losing a tumor, I’m expanding my mind (brain)!
My brother Roger’s surgery was postponed earlier this week to next Friday, January 18th. It was a simple scheduling issue with one of his three surgeons. He is just as happy as he knows he is getting the “A Team”.
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.
Dana Farber has a patient portal, where you can see your appointment and your lab results and send messages to your doctor. And they have a new feature now where you can read your doctor’s notes after your visit. These are the notes that your doctor puts into your record. Doctors have always done this. They are leaving information for themselves and for anyone else who might look back into your record. And now there is a new initiative afoot called Open Notes. I know about Open Notes because of my job at Yale Health. We have implemented this and call it “Shared Notes”. Interestingly, at Yale only 7% of patients are reading their notes.
For the most part notes are somewhat boring and a tad redundant. And this was as it should be. The idea is that your doctor would have shared what he wrote already. When I visited with a cardiologist last year he actually dictated his note while I sat there, and told me to let him know if he didn’t get something right. It was very interesting – and talk about transparency!
A few months ago I read my note from my visit with Dr, Munshi on January 18th (the notes are often not available right away so you have to remember to go back and read them) I saw something that caught my eye, this is what I read:
She is in remission both from symptoms point of view and Also from laboratory results.
Well, will you look at that, I am “in remission”.
I have to say that it does feel a bit different. The stem cell transplant is coming up on 3 years (3 years!) and I’ve been on maintenance therapy for two and a half years. Everything is moving along without much fuss. All good!
I have found myself feeling a bit cocky, well, not feeling cocky, but having some cocky thoughts – maybe I could take a break from treatment – which my intellectual mind knows is not wise nor possible. And there isn’t any reason to want to take a break, other than the biweekly bloodworm sticks, visits to Smilow and injections into my stomach (oh and the constipation, don’t forget about the constipation!). But, really, there is no need. And all it takes to burst my cocky bubble is to wonder about what would happen if I did take a break, and the numbers went up, and it was back, and back where I had to get more and different treatments. Thank you, no, I will stick with my boring schedule.
And that brings me around to why I will be walking in the MMRF Tri-State 5K Event on Sunday, June 10th. Multiple myeloma remains an incurable cancer, so we walk, and raise money and support great organizations like the MMRF in hopes of finding a cure. If you’d like to join my team on the walk (or donate) visit my page.
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!