A Thing About Updates

May, 8, 2023

It’s a funny thing about updates. Writing was easier when I was getting treatment infusions every three weeks. To pass the down time and fill in the space left behind when singing was impossible, putting words to paper opened a needed avenue for creative expression. Like singing a good song though, my desire to write requires a bit of drama. Perhaps drama isn’t the correct word to use here, maybe communicating a shared emotion based on the human experience is more appropriate.  A bit of drama never hurts though when expressing a depth of feeling that validates our tears, our fears and our joys. Art truly does imitate life and my life these past eleven months has been blissfully calm. Peaceful subtleties are harder to write about but reading between the missing lines means wondering if the unshared news is good or bad.

Today’s health update is good. My April scans showed even more improvement in three watched lymph nodes, the only signs of (minimal) SUV uptake. When my SNMWO pulled up my PET/CT scans from May 5th of last year, the day I was admitted to the hospital for seven days with a partial small bowel obstruction, his comment was:

“It looks like a war zone in there.” 

Yes, it did. There were explosions of bright lights in both lungs and throughout my abdomen telling us that the cancer was active and progressing. A war zone that was becoming increasingly more dangerous with symptoms to match. Then he pulled up my PET/CT from April 11th – the war zone was dark. As we scrutinized my body’s landscape we were awestruck by my response to this treatment. Stable is the word used here and stable is a good word in lung cancer speak. My side effects from my current daily oral targeted treatment remain doable and I remain on the prescribed dosage. June 3rd will mark one year since I began taking Mobocertinib off label for compassionate use. 

Now for some really sad news, my SNMWO (super-ninja-most-wonderful- oncologist) has left Kaiser. I had one last appointment with him the day before he left which was tearful and yet full of gratitude for who he is and all he has done followed by well-wishes for his new and exciting opportunities. While I am sad, I am also grateful for the role he has played in my life the last almost seven years. He has been the strong and gentle bearer of good and bad news, the steady rock that understood my most fervent hopes and a realist who could think outside the box. He fought for me, comforted me and showed us that our doctors can also be cherished friends. Both Jim and I will miss him dearly. We’ve had a bit of time to process this news and consider next steps and I will see a new oncologist on Wednesday and see if we are a good fit.

“The only constant in life is change.” That used to be a frightening thought, familiarity is after all, just that; familiar, comfortable and knowable. But, change is inevitable and gives the opportunity to embrace the magic of resiliency as it is the key to riding the waves and flows of change. 

It’s quite the ride. And with that, my latest update is complete.

xo

No More Excuses

August 14, 2022

I’ve been delaying getting my teeth cleaned. Yes, I know, a healthy mouth means a healthy heart but my heart hasn’t been the number one concern. First, it was Covid and my March 2020 cleaning was cancelled. When I got the notice that it was once again safe to visit my dentist, my nausea was so awful that the thought of sitting with my mouth propped open for an hour brought on anxiety dreams. But six years of chemo caught up with my teeth and my two front uppers as well as the lowers began to chip. This was not a good look. I knew what was coming, they were going to take one look at my mouth and declare a massive overhaul. If I’m totally honest, I wasn’t sure how much longer I was going to need teeth so I’d need significant convincing for this to be a sound investment. I was ready for the “just make sure I can smile without embarrassment” discussion. Then I got my scan results from last Thursday’s PET/CT. 

First line from the IMPRESSIONS section:

“Excellent treatment response with near resolution of all FDG avid malignancy. “ 

The tears of relief were instantaneous as Jim and I embraced each other, shocked at the turn of events and overjoyed with the reality of the findings. “Near resolution” means that there are a few spots that show a bit bright but the vast majority of the metastasis is gone or shrank significantly with virtually no activity.

I’m still pinching myself, astounded by the significance of this report. My cancer symptoms had disappeared shortly after beginning the new treatment but the scan offers validation. Yes, I am still dealing with side effects but the scales most definitely tipped towards life and I am overwhelmed with gratitude.

It’s affirmative. I’m going to need my teeth for a while longer.

Sometimes a laxative just won’t fix what ails you. 

July 5, 2022

On May 5th, I was scheduled for a PET scan to see how things were going since starting back on Enhertu after February’s surgery. Prior to the scan, I told Melissa, my radiology tech, that I had been experiencing gripping abdominal cramps, nausea and vomiting for the past couple of days. Of all the scans I’ve had in the past six years, Melissa is probably the most familiar friendly face. Knowing that what I was experiencing was not normal for me, she requested a stat reading of my PET results which were questionable but inconclusive according to the radiologist. Feeling worse and already at the medical center, I checked into Urgent Care where a CT without contrast (meaning I didn’t have to pre-medicate with steroids, yay!) showed that I had an obstruction in my small bowel and I was auto admitted to the Hospital. I spent a very long six days (worst Mother’s Day ever) pacing the hospital floor with the occasional hall pass to walk outside with Jim and Tess keeping me company in the parking lot. For the most part, I didn’t have to deal with hospital food. IV fluids only for the first few days, progressing to a liquid diet followed by a soft diet of jello, pudding and yogurt. Eating, simply being able to eat anything solid and keep it down became the objective.

Small bowel obstructions that don’t resolve on their own are typically referred to surgery, and we consulted with three different surgeons. In my case, surgery was not an option. A reverse NG tube to drain gastric juices would have been the next step, buying more time with hopes that the blockage would still resolve on its own and making for less pain, nausea and vomiting. So what could they do if the blockage didn’t resolve on it’s own you ask? Keep me as comfortable as possible. I heard myself reprising the same old refrain that repeated like a stuck record in my brain when I was first diagnosed, “ARE YOU F&*^ING KIDDING ME!” Simply put, I didn’t feel sick enough to die but I also know that that’s not a prerequisite. It did feel like a sucker punch even though I’ve known that this could be a complication since the moment I found out that the cancer had metastasized to my abdomen. This part of the story has a happy ending, the obstruction resolved on its own. On the day that I was released, I kept down a half of a piece of toast and a few bites of cream of rice cereal which was beyond exciting! I left with instructions to follow a low fiber diet and promised to return to the hospital immediately if things changed.

To add another layer of uncertainty, disappointment and worry to the mix, scans also revealed that after 18 months on Enhertu (16 months in clinical trial) my cancer had progressed and I began the process of qualifying to try an oral targeted therapy, off label. This proved difficult from the standpoint that even though Dr. Patil at UC had first suggested I try this approach and Dr. Narayanan seconded his suggestion, Kaiser would not approve this drug’s use for my one of a kind mutation. After two denied insurer appeals, the drug manufacturer approved me for their financial assistance program and I am getting the drug delivered monthly at no cost.

Starting a new treatment as I’ve said before is challenging in many respects. Emotionally, I dealt with the changes it would mean when it came to drug delivery. My previous six lines of treatment have all been infusions. On treatment days, I would see my doctor and then head over to the infusion center where the room was full of other patients and nurses to watch over us, making sure there were’t any infusion reactions (of which I have had several) or any other problems. Being surrounded by professionals who knew how to handle any situations which might arise was always a comfort. I signed for and accepted this drug at my front door. Jim was saddled with the responsibility to watch over me, phone at the ready in case he had to call 911. We actually discussed driving to the hospital where we would wait in the parking lot as I swallowed my first dose, you know, just in case. It took me an hour and a half to muster the courage to take those first four pills and I’m happy to say that all went well. I understand this anxiety is reversed for patients who start out with an oral chemo and then need to switch to (or add on) infusions. I can say with authority that these changes are challenging and life altering. Every. Single. Time.

With my new oral targeted therapy I take four pills everyday. Instead of a big hit every two to three weeks (plus pre-meds), I get a smaller hit every day (without the pre-meds). Side effects are also different with this drug.  Diarrhea has been the most challenging, I didn’t even know this kind of diarrhea was possible. Constipation was one of my previous complaints with all the other treatments I had been on. Between the steroids and the anti nausea drugs, I became very familiar with stool softeners, magnesium and fiber. I have expanded my knowledge base to now include Imodium, Lomotil and Rice Crispy Treats (actually good for combatting the big “D” – who knew!). Luckily for me the low fiber diet I am on is also what they recommend for helping with diarrhea so there is a faint silver lining to this. For any cancer patients reading this, my nutritionist, Mary, recommended a product called Enterade, designed for cancer patients consisting of amino acids and electrolytes which I believe is helping a good deal. My SNMWO and his oncology nurse, Jamie, are keeping a close eye on me and I feel supported. As unpredictable and uncomfortable as the side effects are, I must also say that I have noticed a reduction in the cancer symptoms I had been experiencing making a strong case for continuing. 

I will see my SNMWO again in a couple of weeks with scans the end of July or first part of August. We are hoping to take our mini house on wheels for a few outings this summer once I can get the big “D”  a bit more under control. Time with Ben and his parents is always great for lifting our spirits and he is growing into a toddler force to be reckoned with. We are having so much fun 🙂 

As always, I am eternally grateful for the Love, prayers and good wishes coming my way. Truly the best medicine there is.