moirahoran

since I last blogged. So much has happened, but I also feel that in some ways nothing has happened. I continued with the every three week / two year plan of maintenance chemo. My every three month scans continued to trend in a good direction, shrinking and no new growths, no tumor activity. In spite of everything the drugs were taking their toll on my body and I needed two more transfusions. Then my kidney function took a hit and we had to stop first one drug and then the other.

I took a trip to Lake Placid to spectate Ironman Lake Placid at the end of July, thanks to my dear friend Melissa. I was struggling with breathing and energy at this point, more than I would admit. My husband Bryan was adamant that I could not drive up there alone so we came up with a crazy plan for Melissa to meet us somewhere on the NJ Turnpike so I could ride with her. Blessing in disguise, I hate to admit.

As luck would have it, we were staying at the Crowne Plaza. Those of you familiar with Lake Placid will be familiar with the steep climb to the entrance to the hotel from town. I’ve done it many times in the past, when I was healthy. I knew this time it would be a challenge. I made limited trips down the hill, one of the times we walked down my friend Patti flagged down a car and asked them to drive me back up! The times I did walk I went from parked car to car, holding on and resting. A lot. Let’s just say it’s so steep that in years past when I ran training camps there I had athletes who refused to ride down the hill. Or to ride back up.

So the bonuses to this trip — spending time with my friend Melissa in my favorite place, getting to know Patti better and spending time with my long time friend Mike Reilly. Besides the fact that he called me in at the finish of so may races, he was also a great supporter while I was on Women for Tri. And I’ve been lucky enough to be with him more times than I can remember at Ironman race finish lines.

I had a great day at the race, and am forever grateful that I spent this one last time together before Mike retired. I have no words to explain the passion and dedication and laughs and joy in those announcing booths. It was never just a job but truly a passion which will forever inspire me. But then came the midnight finish and the dreaded walk back to the Crowne Plaza. I told Melissa to go ahead, I wasn’t sure how long it would take me to say goodnight to all the IM “roadies” I’ve made friends with over the years. But I also knew the walk back to the hotel would be a challenge and my pride wouldn’t let me show just how difficult it would be. Got to the bottom of that hill and guess what — there were no cars for me to lean on. I tried. And guess what? I couldn’t do it. And had to ask two random strangers for help. And it turned out they had both done the race. And it wouldn’t have mattered if I had said how many times I’d done the race, or how fast, or that I qualified for Kona there. I couldn’t make the walk up that short steep hill. I knew that was a problem, and called my doctor when I got home.

Turns out I had pneumonitis, from radiation. Another gift that keeps on giving. So we began an 8 week intense steroid treatment that made me fat and meant I still couldn’t restart iv treatment. But, my scans were still good so my doctor told me “there is still no reason to restart treatment. Yet.”

We’ve done a lot of travel since then. Sonoma.

Antigua

I’m running again. Half way through a couch to 5k plan. And I will finish it. No matter how slow.

I have scans next Friday. Scares the shit out of me but hoping for the best. The longer I am out of treatment the more I appreciate how good I feel. And remember just how shitty I felt. Cancer sucks.

Five years ago today I had a partial lumpectomy for my triple negative breast cancer, which means that today I’m five years free of it. But I never really felt that it was a day I’d feel released from the shadow of cancer. And I’m not. While I may not have metastatic breast cancer which was the diagnosis in June of 2021, instead I now have a new battle with stage 3 non small cell adenoid lung cancer. Today was spent having maintenance chemo. I’m three months into a course of treatment that will continue every three weeks for two years. Seems like such a long time.

That’s all I’ve got. I feel about 75% back to normal. Back to swimming, which is hard but always feel good after. Thanks, Ran, for always being there.

So, here’s some details on the latest. Radiation is done, 15 rounds kicked my ass and burned my skin. I’ve lost 15 pounds because I just have had no desire to eat. Still not alarming, as I could stand to lose that weight before this started. My chemo oncologist wants me to concentrate on adding protein and healthy fats as I try to introduce solid food back into my diet. My cardiologist wants me to concentrate on adding fruits and veggies rich in iron to help increase my hemoglobin and possibly avoid a transfusion.

Well, I tried. I still needed the transfusion yesterday. I feel a little creeped out by the idea that someone else’s blood is in my body, but I tried to turn it around in my head. I’ve run many blood drives, and I know first-hand how happy people are to help someone someone they don’t even know. Someone who donated O+ blood made my transfusion possible. Thank you.

If you’ve never donated blood before please look into it. It’s simple and painless and could save someone’s life. My son-in-law Ryan and I will be coordinating a blood drive on April 10 at the Friendly Sons of The Shillelagh in Belmar. Please consider donating, as an added incentive you will get a pint (of beer) for your pint (of blood).

Do I feel better after the transfusion? I will have to see how the days and weeks progress. This morning? I basically slept all day and night yesterday, woke up at 5:30 and enjoyed a cup of my favorite coffee. That’s new, I’ve had no taste for coffee and it’s one of my “life” favorites.

Coffee is life!

So, what’s my ongoing treatment plan? Two years of immunotherapy and chemotherapy, once every three weeks. The treatment will includes Keytruda and and Pemetrexex. Doctor promises substantially less, even minor, side effects from this. But yea, two years is a long time. One day at a time is the only answer.

Thank you again to everyone who has reached out – prayers, flowers, fruit, cards, phone calls, rides and more. you have no idea how much they are all appreciated. Even when I don’t need anything, just hearing from a friend makes my day better.

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.

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.

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.

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.

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!

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.