The 2nd Inning

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.

IMG_4471

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.

 

I Got Next

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.

front with arrowside with arrowBy 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)!

And here we go!

Did I mention, it’s always something? 🙂

 

 

 

Remission

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.

P.S. The co-founder of the MMRF, Kathy Giusti was highlighted in an article in the Wall Street Journal this weekend, “An Urgent Mission to Speed Progress Against Cancer”.

Giving Back

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.

Here’s the link to my fundraising page: https://walkrun.themmrf.org/Tri-State/heathersmith.

Thanks as always for checking in here.

Venting

Arrrgggghhhh…

I sent a message (via MyChart) to Dr.Seropian’s office early Friday morning to start the process to schedule my consolidation chemotherapy treatment. I knew I wouldn’t be able to start this week, but figured next week would not be a problem. I also called to cover my bases. I received a call back from someone in the office who said they would call me as soon as they figured out the best time for me to be seen. Fine.

End of the day Friday, nothing.

And then the long weekend. And yesterday (Tuesday) I’m back to work and although I had a dream Monday night that they couldn’t see me until November (love those anxiety riddled dreams) I forgot about it until 5:00 p.m. when I realized I hadn’t heard anything. I called, even though it was after hours, so I cold at least leave a message. I spoke to someone in the office who said she would get the message to someone right away and they would get back to me as soon as possible. I thanked her and even said I didn’t expect a call back that day and tomorrow would be fine.

I just realized it is 10:00 – and still nothing 😦

Just sent another message (the nurse who responds to the messages is very efficient and quick to respond, although she is not the one who schedules).

When the medical system causes more stress than the disease and the treatment – there is something wrong with the system.