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“Right now, you are cancer free”. This from my medical oncologist at my appointment on February 20th.

My recent battle with lung cancer with some brain metastasis started three years ago; my initial journey with breast cancer started 7 years ago. That’s a lot of appointments, treatments, scans, and more. And I’m still on an every three month brain MRI and body PET and CT scan schedule but I can deal with that. Especially since right now I’m cancer free. I do know that it will come back one day. But today isn’t that day.

I don’t really have anything else to say, I’m still processing this information but in the meanwhile I will continue to live as best as I can and continue to appreciate the gifts that God keeps giving me.

I picked this up after my appointment, they make me smile! Thank you @shaynaull

The brain surgery was a success, according to the surgeon. “Will it come back?” “No, that will not come back” I didn’t ask the next question — “is it likely another brain metastasis will happen?” I’m either staying positive or avoiding the issue. Surgery was four weeks ago. Initial radiation setup was two weeks ago. They made me this lovely mask which will hold me immobile for the radiation. My claustrophobia is out in full force!

We started out with five radiation treatments on the schedule but that’s been changed to three. Doctor said less treatments but more intense. Just hoping that doesn’t mean more side effects, but he’s said there shouldn’t be any.

I’ve had to get used to letting people help me, which if you know me at all you know that isn’t easy. I’m not really supposed to drive — i had a week between surgery and radiation where the doctor said to drive local. I’ve had to get help cooking, doing laundry and other simple chores because I get tired easily. I can’t bend over and I can’t pick up anything heavy — initially five pounds but now twenty pounds. Since Blue is 11 pounds it made walking him (up and down the steps which he can’t manage) a challenge.

I’ve got food from friends, puzzles, new knitting projects and (hopefully) back to mah jongg. The doctors told me to challenge myself, I see it as keeping busy. I wonder if I can manage another marathon and another full Ironman. I want to get back on my bike and back in the pool. I see people running and I miss it! I was just starting to feel good about working out when all this started back up. I have new running shoes, a new bike and a new kick board that needs using.

Trying to keep out the negativity, how long can i do that? There has been mention of side effects. I’m not focusing on them, but … just the couple of days in the hospital were frightening. I couldn’t write, i couldn’t remember how to do super-simple things like use the phone, the microwave and how to drive. i mean like remember to close the door – i mean like i need keys and to close a door.

i am fiercely independent and used to being able to take care of what i need to do to accomplish my goals.

what am i dealing with?

BRAIN: New left middle frontal gyrus metastasis at 2.3 x 1.8 cm associated with marked subjacent edema and mass effect extends to the corona radiata and left precentral gyrus. Slight rightward midline shift at 0.2 cm. Unchanged treated metastasis in the right cingulate gyrus.
No acute hydrocephalus, intracranial hemorrhage or infarct.

Sounds simple enough to just go in and take it out, right?

I started noticing some cognitive decline a week ago. Last Thursday I had a scheduled MRI with anesthesia. The test was scheduled in the same day as the UN general assembly, making for a disastrous commute. Plus MSK made a mistake and my tests were not scheduled as planned.

Simple things were getting difficult like writing and knowing I need to turn the light out. By Wednesday morning I couldn’t couldn’t control my right side. I have a lesion 2.3 x 1.8 cm on the left side of my brain. This will be addressed with a procedure on Wednesday October 2023.

It’s very hard for me to formulate thoughts, bear with me please and send prayers and good thoughts.

I don’t like to post when I don’t have answers. And I’m not looking for sympathy while I wait. But, Friday was a tough day. I had my brain CT on Wednesday. I read the report on Thursday when it was posted. And I knew what was next. Some areas of concern in my brain. And something grew. .4 cm. But still grew. Not what they treated but the surrounding area. Maybe treatment related. But still of concern. So now we wait for an MRI to be scheduled. Under anesthesia because I’m claustrophobic. and then waiting for results. So more weeks of worry. I realized on Friday after I saw my doctor that my life may consist of three month increments forever.

What really kicked me in the ass was when I went back and read the CT scan results again after I met with my doctor. I saw something I hadn’t noticed before. And no one mentioned it. I didn’t understand what “Chronic right caudate infarction”meant. So I sent a message and my doctor called me. Apparently at some point I’ve had a stroke. So. 12 Ironmans, 26 marathons and living a fairly healthy lifestyle and this is where I’m at. I guess if I wasn’t I’d be dead by now.

I’m sorry but on Friday I was feeling pretty sorry for myself. I didn’t share how I felt with anyone. I actually cried a bit after I met with my doctor. A kind of “why me” scenario.

And then, some really random messages came in. First up – my dear friend Lizzie sent me this text: “Your ears must have been burning today and last night. Up here in Lake Placid with DMoss and Celeste. …We have been talking so much abt all we learned in our LP trips with you! 🙃

Next I saw a post in our Fxck Cancer Endurance Club group from my friend Marci. “Thank you for turning this runner into a triathlete turned cyclist. I think of you every time I clip in and start riding.”

Then there was Grayden – a 4 year old at our club the other night. I held the door for him and his pregnant mom. He looked up at me and said, from the bottom of his heart, “thank you old lady”. Two days later and I’m still laughing,

So we haven’t solved my stressors but — Lizzie, Diane, Celeste, Marci, Melissa, Ran and Grayden —thank you from the bottom of my heart 😘😘😘. And the moral to my story is, if you have something nice to say to someone then say it. You never know how much it might mean.

Scanxiety is a real thing. I’ve had two rounds of every three month scans since my last post. Time flies when you’re having fun (insert sarcasm). But, to make a long story short … I’m free from the need for treatment for another three months! My doctors words were “enjoy your summer”.

For those of you who want more – let’s talk a bit about last summer. Besides being faced with what I couldn’t do in Lake Placid. I had a spot for my paddle board on a rack on the river at the Shark River Beach Yacht Club. I never paddled. Why? Because I was afraid I couldn’t do it. The woman who paddled multiple times around Manhattan island was afraid of running out of breathe, in the middle of a much smaller and much less tidal river. I had to stop doing another of my favorite things — riding my beach cruiser to the beach (about 2 miles each way) because I couldn’t make it back home and had to call for a ride home. I didn’t once open water swim, because I was afraid. And I haven’t been on my road bike since my crash. So (understandably I hope) leading into this past Monday’s scans I worried more and more about the possibility of having to restart treatment. And having another shitty summer.

My “eyes to thighs” scan back in February were good. Nothing new and nothing growing. My brain scan showed something questionable. Which meant the need for a brain MRI and a few extra weeks of worry. Those results turned out to be all good, so back to three month CT scans.

In the meanwhile, we (me) decided to rescue another Shih Tzu. We welcomed Blue into our home on March 1st. He’s been such a joy for both of us, but especially for me. He likes nothing better than to be sitting next to me, pressed against my leg. There is nothing more calming!

Catching up to this weeks scans. “Eyes to thighs” still show nothing new and nothing growing. But nothing shrinking anymore either. My doctor is extremely pleased. I asked more questions. I still have stage 4 lung cancer. It will never be gone. But my doctor told me about a patient who hasn’t needed treatment in over ten years. I could definitely live with that.

There is some sad (and good) news from this week. My doctor is leaving MSK, this Saturday is her last day. She’s going to work for a major pharmaceutical company to do research on lung cancer. Selfishly, I don’t want to lose her. She knows so much about me. But on the other hand – she will have more flexibility to spend time with her family and what a gift to lung cancer research. I won’t meet my new doctor till the end of August.

On a more personal note. I mourn the loss of the old me. I miss biking for hours. I miss running hard. I miss being fit enough to race a hard Ironman. I miss swimming so hard I thought my lungs would explode. I miss having a fit body. I am trying to accept I may never be that person again. I am genuinely grateful to still be alive.

POSTSCRIPT: never underestimate the power of a kind word. I was leaving the gym this morning, still in my run shorts. Another member stopped me and said “you’ve got great legs, do you mind if I ask how old you are?” I happily told her 67. Made me smile, I guess there’s still some hidden fitness there.

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.

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.

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.