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.