Stuff I’m Not Okay With

I’m struggling, I’m not going to pretend different. I have spent my entire life, until now, taking for granted how I felt physically. I slept good, enjoyed food and drink in moderation (well maybe sometimes a little more than moderate) and could manage whatever I needed or wanted to do in a day. I could easily plan to do things in advance. These days I’m reminded of what my grandmother always said – “God willing”.

Instead, I’m reaching for medications to battle the side effects of the aggressive treatments that Dr Shin (radiation oncologist) delivers during radiation and that Dr Namakydoust (medical oncologist) delivers during chemotherapy / infusions. We are done as of last Thursday with carboplatin which has the most side effects, including massive doses of dexamethasone. Last dose was Saturday, December 11. I stopped a couple of other medications that I took to battle side effects, and the doctor said it could be two to three weeks for me to notice a difference.

In the meanwhile, Dr Shin has been very straightforward about radiation side effects. So much so that when I asked about treating possible side effects he prescribed all the medications available to treat what will happen. When I mentioned yesterday that I can do anything for 13 more days (over the next 21 days) he said they last longer and that I can expect to feel worse before I feel better. The two areas by my neck are close to the surface and can be seen, the one down the middle of my neck can not be seen. I’m guessing it’s the steroid moon face and football player neck that hides the fact that I’ve lost about 13 lbs.

Swollen lymph node glands

Apparently my radiation is very aggressive and also hits my lung tumors since they are so close. My skin and my esophagus should bear the brunt of this treatment. He said it owill be a while before swelling goes down. Just one more thing that adds to my discomfort. And even to me that sounds whiny!

I miss being affectionate and social. I love hugs. I love hanging out with new friends and old. This is something we are all struggling with, but since I am immune compromised there is a whole other level of risk. A random flu delayed my treatment for a week, catching a cold could do the same. I actually have a mild panic attack each time someone gets too close!

Carrying on a conversation presents a whole other series of challenges. Depending on the day, I have varying levels of laryngitis. Throw a mask on me and it makes being understood pretty difficult. If I raise my voice to be heard it seems to come off angry or mean. I guess I’ll just not going to talk out loud till this clears up.

Sleep is something that came easy before. Not now. I’ve cleared my room of blue light, don’t watch tv in bed, don’t check my phone if I wake up (until I know I’m “up”), etc. I’ve tried everything from herbal teas to Valium. It’s getting better – last night I had 6-½ hours, that could almost be considered normal!

Food is an easy one, and a tough one. Easy because not much is appealing at this time. Water, bone broth, simple and not too spicy soups. Fruit and juice. Breakfast and lunch are more manageable than dinner. That’s the easy part. Difficulty is — I like to cook, I like to go out to eat and enjoy good food from caviar to escargot to steak tartar to salmon or a perfectly cooked rib eye. None of it sounds appealing at the moment, which sucks. My fridge and freezer are well stocked, thanks Lizzie, Karyn, Nancy and Melissa!

The moral of this story: Write it down. Say it out loud. As I listen to myself I realize it’s all small shit. As I said almost five years ago during my first cancer battle — “my life is different, but at least it’s life”. None of the above seems like it’s too high of a price to pay to stick around for a while longer.

Thanks for caring, and for listening. And for helping me see things more clearly.

Almost Moving to Maintenance

So yesterday was sort of a big day in my prescribed plan. It was treatment #4 (or 6). After treatment #4 I move to a maintenance plan with only two of the three drugs I’ve been getting — Pemetrex and Pembrolizumab aka Keytruda. The Carboplatin and the Dexamethasone is done, and (hopefully) it’s accompanying insomnia will start to ease up. It was an uneventful day, good news being that Dr. Namakydoust says that the excessive runny nose and mucousy cough (all clear) is my tumors breaking up. If that’s true there is a lot of that going on. I know it makes Bryan nervous, and it can be very uncomfortable when I’m around strangers. I usually explain my situation to anyone I’m with for any length of time. I’m not sure which makes people feel worse – worrying I’m spreading some sort of virus or I have cancer.

Speaking of other people — I’m keeping my circle of contact smaller and smaller. Immunity is still down and I don’t want any more issues. I’ve already noticed that I do have some breathing issues and minor exertion can mean I need to stop to catch my breath. (More on close contact with random strangers later).

Let me try to finish up with the “facts” of the day. We’ve added another drug to my regimen of treating side effects — Protonix for the gerd I’ve developed. All I keep thinking about is getting off all this stuff one day soon! As I mentioned in an earlier post, radiation starts on December 16 and the 15 rounds ends on January 7th. The maintenance treatment will continue every three weeks, but the doctor said I would be too “toxic” if we continued during radiation so we are on hold until January 13. My next PET scan is February 1 and my next MRI is February 21.

I’ve had quite a few funny encounters with random strangers on the rare occasions I’ve done in-person shopping, usually first thing in the morning. I had to buy a new MacBook and it’s just not something I wanted to do virtually. I’ve splurged each of the three times I went to the Apple store in Freehold and got myself a (half sweet) peppermint mocha. The mall is depressingly empty, but at 10 am I appreciate that. So I get on the very short line with a mask on and keep my distance from the person in front of me. Another person walks over and looks at me and I said “yes, I’m behind the woman in front of me ( with some space). Se walks over and gets behind me. Very close. I walk over to the other side. She follows me, again — very close behind me. And a third time, at which point I look at her and she says “I’m just trying to figure out where you are standing. I responded “wherever there is some space”. Her mask-less self finally stays about 5 or so feet behind me. And I’m still more worried about the common cold, another flu or any one of the random viruses that I am highly susceptible to. I respect everyone’s choice to get the vaccine or not, and to wear a mask or not but I would ask for the same respect in return. Many of us are fighting battles that aren’t visible. In some ways it was easier when I was a bald and easily identifiable cancer warrior. I guess I will be ordering online if I do go back to Starbucks!

On a positive note, Bryan and I have always talked about visiting Mohonk Mountain House in New Paltz. We finally decided it was time. We are heading up there on Sunday, it will be the perfect relaxing getaway before starting radiation.

It’s Been a Good Week

CT Scan Results: Part 1. Lung tumors are shrinking or stopped growing. No new growths. Continue treatment as scheduled through the 4th three week cycle (December 9th) with Pemetrexex / Pembrolizumab / Carboplatin. Treatments after that will be just Pemetrexex / Pembrolizumab every three weeks, indefinitely. Once the carboplatin stops so do the steroids. Hopefully I can sleep again.

Part 2. Lymph node activity is growing in my neck area. Doctor classified this as “to be expected”. Dr. Shin has planned radiation treatments in conjunction with continuing the above chemo / immunotherapy schedule. The setup is scheduled for December 1st and 25 treatments start on December 16 and continue daily (5 days a week) through Friday, January 7th. There is no mask involved this time and all treatments are early morning at MSK in Monmouth.

Brain MRI Results: This is the good news off the week for me! “What we radiated in your brain is gone”. Follow up in about three months with another MRI.

The neck radiation sounds pretty definite to have side effects. I will take that as it comes.

Prayers and good wishes are working, thank you all.

Accepting Help

I’ve been struggling throughout this second cancer journey, physically and emotionally.

Physically – I hate that I have to take all the medications to combat side effects. My energy level, for me, is low. I can’t just barrel through the day and expect to get everything done. I need to think about what’s a priority and portion out my energy accordingly. I have to consider the health risks in public places and take precautions. I’m just as worried about the common cold or another case of the flu, probably more than I am concerned about c***d. I’m triple vaccinated, not that it seems to matter. My flu vaccine didn’t prevent the flu either! I’m eating healthy and my blood work is carefully monitored. I feel I’m doing my best, in spite of the random “why are you wearing a mask” comments.

Here’s the emotional part. I’m trying to learn to accept help, graciously. My personality makes it much easier to give then to receive.

Healthy food for days, and bacon!

And this all brings me to the feast pictured above. In the past I’ve sent “grab and go” meals to friends and acquaintances to help out, especially from Karyn and My Kitchen Witch in Monmouth Beach. My friend Elizabeth brought some of these meals to us a few weeks ago and they were a huge help on nights I got home late from treatments or appointments, or was just too tired or disorganized to cook.

I reached out to Karyn to order some more, and wanted to pay for these myself. I got the following message back from Karyn:

“Moira u have changed my life in so many ways. I have a love of sports, ive met so many amazing people and have had amazing adventures that are all priceless and now a partner who shares this with. Let me do this for you❤️”.

And I really had to stop and think about so many of those adventures! And smile. Out riding and seeing a cow …. I mean a fox. And almost getting hit head on by a car. And ocean swims. And rides. And seeing you out and about happy! So I said thank you and accepted.

I can’t say thank you enough to all the friends an family for the thoughts and prayers and treats and thoughtful gifts and favors. Thank you for the cards and flowers and plants and sweets and so much more!

Brain Radiation and a Family Dream Vacation

I should update my treatments and disease status first. Tuesday I had a CT scan and it’s mostly good news. Bottom line is my lung nodules have either shrunk or not grown and there are no new ones. There is increased thoracic adenopathy – three thoracic nodes have grown and Dr. Shin and Dr. Namadydoust plan to treat them with 15 radiation treatments. I will find out details and scheduling on Tuesday. Apparently there will also be some lung benefit to this treatment. Both doctors seem pleased with this result and are not alarmed by what did grow.

I’ve really come to appreciate how “easy” my treatments were in 2017 for my triple negative invasive ductal carcinoma. Except for some “cosmetic” issues I breezed through and it really didn’t have to change much in my day to day life. I even manage to cross the finish line of Wildflower and Ironman Lake Placid the following year.

I’m grateful there is a portal that manages all MSK communications and scheduling. I have 5 primary doctors I’m working with at MSKCC, three I’ve met with for consultations and two additional doctors I’ve only had telemedicine visits with. I have also been tasked with finding an outside endocrinologist to manage my underactive thyroid that I’ve had for years.

Dr. Traina, my breast cancer oncologist who I’ve been working with since my initial diagnosis and then followed up with a two year clinical trial. There was a close call when my diagnosis was initially a return of my breast cancer but that diagnosis changed. I am 4 years and 8 months out from my TNBC diagnosis.

When the TNBC diagnosis changed to non-small cell adenoid lung cancer (stage four) I was turned over to Dr. Namakydoust. Her specialty is thoracic cancers with a special interest in treating advance lung cancer.

When a small spot was seen on my brain I was added to Dr. Jacob Shin’s roster of patients, also. He specializes in radiation oncology and therapy. Very specialized!

I am also scheduled to revisit with Dr Lacouture, a dermatology specialist in conditions that arise from cancer treatments. I had a squamous cell carcinoma pop up on my lip earlier this year and they feel i should have closer attention as these types of cancer are more likely to return under chemotherapy treatments.

I’ve also met with an endocrinology specialist, integrative medicine department and an interventional pulmonologist.

There’s also follow ups with my regular cardiologist and some dental work that needs to get done.

And then there’s daily medication, which I fought for as long as I could but finally had to give in. The headaches and nausea and queasiness were too much for me. These all have to be taken on a timetable, I based around when I took the last one and when I ate so it takes some managing. I’m getting the hang of it and figuring out a routine.

Daily medications

There was also a spot located on my brain, just one but definitely of some concern. I was offered two options – just watch it and see if in three months time it grew or do a single dose of radiation. It could be nothing or it could be the “stage 4” of my lung cancer. I chose to act on it and on October 20 I had this contraption attached to my head and had one treatment with radiation.

Anyone need a Halloween mask?
Wasn’t as claustrophobic as I expected

In the middle of all this my family travelled to Palm Island Resort in the Grenadines for a long planned two week vacation! Let’s just say there is lots to still be smoothed out with international travel but the four of us arrived in this magical, private paradise and enjoyed two weeks of rest, relaxation and adventure.

17 seater inter-island. There was still a boat involved too
Morning view made it all worthwhile

We started planning this trip long before c*v*d and cancer interfered. There was several times we thought it wasn’t going to happen. But we got it done, my doctors all supported the getaway. We had an amazing experience and did so much – fishing, sailing, snorkeling, beaching, spa treatments and more!

Family dinner each night, so nice to get dressed up a bit
Sea to table dinner
Fresh catch dinner again

Full disclosure – I felt great as the trip started but definitely had some fatigue set in as the days went on and I would go back to the room to rest a bit before happy hour and dinner. A few headaches scattered in but Tylenol seemed to help. There was nothing I missed except maybe overdoing the alcohol and food 🤣🤣🤣.

On the flight home on Saturday night a full blown out of control headache landed, along with fatigue and nausea. I spent Sunday and most of Monday on the couch How severe was the pain — does punching the couch and crying score? Does wondering if this is the trade off for my treatment and if so, is it worth it? Is this how it feels to be dying? There was some pretty dark moments but once I started dosing with the dexamethasone I got pretty rapid relief. Dr Shin feels the radiation treatment may have caused brain swelling exacerbated by the flights. I have another MRI scheduled in NYC on Wednesday but feel much better.

Sleep has been a struggle. After my 4th treatment on December 9th we can stop the carboplatin which will stop the need for the steroid dosing. My treatment will continue with Keytruda and Pemetrexex every three weeks for potentially two years.

So, with all this laid out, I hope all my friends and family understand where we are at and how much there is to manage and schedule. We have our moments of fear but are trying to stay focused on the positive. Thank you for all your support, it truly means a lot!

And try to understand that random person you see wearing a mask may not be a “c*v*d crazy”, they may be trying to protect themselves from the flu (which I caught in spite of precautions and a vaccine) or the common cold because of a weakened immune system. Putting a mask on while you talk to them or just taking a step back might sow some consideration and cost you nothing.

Life is good!

The Weeks Ahead

Last week passed fairly uneventfully. I didn’t notice any side effects from the treatment last Saturday. I’ve recommitted to doing some kind of positive activity on those days that aren’t taken over by doctors. I’ve managed some walk/runs, a bit of indoor cycling and some functional fitness sessions with our long time personal trainer. I even participated in a 5k in support of Mary’s Place by the Sea. It felt good to pin on a number and be part of an event. A friend I met during a visit to Mary’s Place stayed with me and we walked and ran and talked and I felt glimmers of “normalcy”.

From a treatment standpoint – there continues to be a lot on the calendar. last week I met with the integrative medicine department to try to balance my body with the side effects of treatments.

Thursday I also met virtually with Dr Jacob Shin, who specializes in stereotactic radiosurgery — aka radiation — to my brain! One extremely targeted treatment with one appointment before that for construction of s face mask that will keep my head immobile on the table for about 45 minutes each session. I can see, hear, talk and listen to music. There was another option: wait three months and see if the barely measurable spot in my head has grown. Didn’t seem like a smart choice. So we start this Friday and treatment will be on October 20.

The positive on Thursday was a cruise in the River and Ocean on a friend’s 65 ft yacht, made it s little easier to block out the brain stuff.

Light Hearted

Monday started with lab work and a visit with Dr Namakydoust’s nurse practitioner to see how my body responded to the new first treatment. Numbers are good and I’ve mostly felt ok, just a bit tired. My next chemo / immunotherapy treatment is October 14. I’m hoping for a CT scan after that to see if tumors are still shrinking and / or have at least stopped growing.

Today is a trip into NYC for an MRI, under anesthesia. I am way to claustrophobic to manage an hour with my head in a noisy and closed tube. This should give more details about the growths and help target treatments.

And then . . . A two week vacation with my family to an island paradise that has been in the works since before the pandemic! We have all been looking forward to this — feels like forever. 🐬 🌴 🏝 🍹 🌊

New Diagnosis and Treatment

Things have been changing very fast here. Last Tuesday I had more lab work done in the morning, two Telemedicine visits with the research nurse and my breast cancer oncologist to end my participation in the study and then a trip into NYC for a PET scan. I definitely have non small cell lung cancer either stage 3c or stage 4, most likely adenoid but undefined. Which one it is will determine my final treatment plan but we’ve started treatment as if it is stage 4 so things could get rolling.

My first treatment was this past Saturday morning and things went smoothly. Two of the drugs I was already receiving as part of the clinical trial — Carboplatin and Keytruda (Pembrolizumab), new drug is Pemetrexed. A bit more steroids in my infusion and for two days after. I will have a treatment once every three weeks, after four treatments I will have another CT scan to see if tumors are continuing to shrink.

That’s the “facts”. The emotions are a different thing. Last Monday Bryan and I had to make the difficult decision that it was time to let Brody cross the rainbow bridge. His dementia was to a point that he had no “good moments” in a day. It’s a huge physical and emotional hole in our lives.

Who rescued who?

My current situation? I’m still trying to figure out how to deal with the facts. I went from training for my 13th Ironman at age 65 to that same 65 year old who’s life has been taken over by medications, doctors appointments, tests and the fear of catching the common cold.

I’m overwhelmed with gratitude by the support and thoughtfulness from so many friend and family. The flowers, cards, treats and more are so appreciated by Bryan and me. Thank you, from the bottom of our hearts.

A Change of Direction

There are two people that I bring with me to each treatment — my mother (who passed away from cancer 43 years ago) and my Aunt Marion (who passed away from old age 6 years ago). The earrings are a gift from my mother from a trip she took to Amish country not long before she died. The Blessed Mother holds holy water and my aunt had this by her bedside until the day she died. Putting on the earrings and blessing myself with the holy water has become a habit that brings me some comfort and peace each time I visit MSK.

My mom and my aunt

Treatment number 4 was completed this past Tuesday, the day went very smoothly. Bloodwork came back with pretty much the same low red blood / hemoglobin numbers. Nothing that warrants withholding treatment, thank God. There has also been a drop in my thyroid numbers, so an appointment with endocrinology is pending. This coming Wednesday I have a CT scheduled that will hopefully show that my tumors have either shrunk or, at a minimum, stopped growing.

Wednesday brought more good news. My three month follow-up visit with my hand surgeon showed that I am fully healed and cleared for full activity. I haven’t been particularly good about working out but I will keep trying to regain some fitness.

My wrist is healed!

Friday afternoon I got an unexpected phone call from Dr Traina, my chemo oncologist with some surprise news. Bottom line, the cancer in my lung is not metastatic triple negative breast cancer but rather a new cancer. Non small cell lung cancer. And now it looks like my treatment plan will be changing. Next week will bring more information. And hopefully a better understanding of whether this news is good, bad, or the same. It’s frustrating, after the battles to get this treatment and study participation started it’s going to change but I certainly want and need the treatment best tailored for my cancer. I’m grateful that Dr. Traina kept asking that the testing continue until there was an answer.

“I was notified by molecular pathology today that 3rd attempt at Moira’s IMPACT testing was successful and represents a profile more consistent with a non small cell lung cancer. It specifically does not match her 2017 path from TNBC primary in terms of clonality.

“I have discussed with Dr. Rubin, Service Chief of Thoracic Oncology Service and arranged for an expedited visit with TOS at Monmouth next week. Discussed with Study Pl, Dr Robson who will report to KEYLINK sponsor and we will remove her from study treatment. Plan to complete CT CAP as planned next week and keep her visit 9/21”.

No Surrender, Revisited

I am grateful to wake up this morning with treatment #3 behind me. Several times during the 6 hour delay I wanted to give up, I want to go home. Then I thought about how many hours I had already invested and didn’t want to give that up. I knew if I left with all the unresolved issues I’d have no guarantee of getting them solved. So I insisted the pharmacy and the staff keep going to get the roadblocks cleared to get my treatment started. And I woke up this morning feeling like I crossed the finish line of an Ironman!

Morning Mood

Here was my appointments for the day: 9:30 Lab Visit; 10:30 AM Telemedicine Visit with Research Nurse; 11:00 AM Telemedicine Visit with Nurse Practitioner; 11:30 Treatment. Besides issues with the telemedicine system (system was down) we got thru the first three scheduled appointments. Although I have some low numbers connected with red blood cells I was cleared for treatment, all orders were already in. I checked in again near the treatment area to check if there were delays and was told there was not.

And the 6 hour delay began. I am not unreasonable, I do understand that issues come up and sometimes there are delays. After waiting 45 minutes I asked one of the staff from treatment if they could check on my status. She checked my wristband and said yes, she’d be back. I never saw her again. I waited another half hour and walked halfway across the building to a service kiosk to check again. The woman called treatment and after a few minutes she told me there was an issue and someone would be out shortly to let me know what was going on. 15 more minutes and nothing. Someone came out for another patient and his time I stood up, stopped her and said I need answers and I need them now. She said someone would be right back, and she was. I was brought to s treatment room almost two hours after my scheduled appointment and the first issue was explained to me. Understandable – one of my numbers raised a red flag on my dosage of carboplatin and it took two hours of phone calls and emails to clear my dosage. I blame the length of time on people working remotely and the need for constant phone calls, messages and waiting for call backs. And the lack of communication to me had my frustration and stress level in the red.

But, I’m in a treatment suite and we are cleared to mix my drugs. Should only be a few minutes. It didn’t take long for me to realize things weren’t going as planned. All good with the carboplatin and the gemxitabine (which I had received in treatment #2 at Monmouth). Red flag on the pembrolizumab, which is the immunotherapy drug. Seems that Monmouth was not “authorized” to dispense. It took four hours to get it through all the red tape. It took multiple phone calls, emails portal messages, every manager and more! About two hours into the wait I started thinking I’d just go home, let them work things out and then come back the next day to finish. Then I thought about how many hours I had already invested and realized I couldn’t just DNF. I hadn’t accomplished the primary goal of the day – get treatment! I think the nurse manager snd the pharmacy manager were a bit surprised but I knew I had to keep my foot on the accelerator.

They did keep me informed and shortly after 5 PM the pharmacy manager came back and said we did it and they were s out to finish mixing my drugs. Pre-treatment drugs started, snd just before my nurse finished her shift at 5:30 she had the carboplatin running. By 7:20 PM we were done and I headed to the parking lot. There was only one other car there.

This song helped me get through the day, as borrowed from Seth Avett’s helloclove Instagram. Thank you!

Gimme Peace – Learned from Tom T. Hall’s 1978 record: “Places I’ve Done Time” written by Tom T. Hall.

My Soul Mate

Back in March and April of 2017, when I was first diagnosed with cancer, this was the guy I would hold close and cry to. And he just sat close and let me cry. Four plus years later, he’s old and struggling and I can’t put my burden on him. But I can still hold him close.