Boooo, no fun. I’ve had two of the six to eight cycles of capecitabine. I’ve developed a rash, hand and foot syndrome, where the skin gets dry and begins to peel, diarrhea, and then the fun really began.

I had begun my next cycle of capecitabine on Tuesday morning, March 12. I also had a visit with my oncologist who decided I needed a break from the capecitabine. After visiting with her, I had an immunotherapy infusion.

Over Wednesday, March 13 I felt chilled but better in the morning. After working for about a half day the chills came back and it dawned on me that I had a fever. It was 100.5° fever that I thought a little rest would ease. It stayed high so Matt came home and took me to our local clinic. The doctor there had me speak with an oncology colleague of my oncologist. She said that I needed to go to the ER. By then my temperature was at 103.8 and I agreed 100 percent!

We decided to take the ferry to the hospital affiliated with my oncologist’s department. Over a course of a few hours, I had an EKG, chest X-ray, a blood draw, and an IV inserted into my right arm. The ER doctor said I’d be staying in the hospital. I was diagnosed with fibril neutropenia. In other words, a fever with a very low white neutrophil blood cell count. I was highly immunocompromised. It took some time for them to find a bed for me on the particular floor for immunocompromised people.

It was the wee hours on Friday, March15 when I was moved to my very own room. It had a fantastic view and its own bathroom. They tried to pinpoint if I had an infection. The bloodwork showed nothing, nor did the urine and stool samples. That part is a mystery.

It took about a day or so of antibiotics, fluids, potassium drips, and other meds for the fever to break. They wanted some sign of improvement in the diarrhea which was depleting my potassium levels, before releasing me.

In the meantime, by Saturday night, the vein with the IV had become permeable and edema puffed up my hand and fingers. A nurse tried a vein on the outside of my left arm for a new IV placement. That did not work and I rued allowed that it would be nice if my port could be used instead. She asked and my wish was granted. A nurse from another the oncology unit came up to remove the IV from my arm and access my port. Yay! He explained each step and made sure that I was aware of some important aspects of what needs to happen when a port is accessed and de-accessed.

On Monday I got the good news that I could go home. I still have diarrhea, and so am on a low-fiber diet and a neutropenic diet of no raw vegetables, washed fruits, no raw fish or anything that could cause an infection.

I look forward to when I may visit a local sushi place! May it be soon! 🎏 Thank you fishes of the sea, for benefiting my health (soon).

Much Love,
D’Arcy

The view from my ninth floor hospital room.

It’s officially Fall and about 6 weeks since my lumpectomies. I have permission from my surgeon “without going gang busters” to use my arms. It was important for me to use them as little as possible to heal faster with less pain, and to minimize the risk of lymphedema. To be honest, she gave me that permission a couple of weeks ago. I’ve been delaying to update this blog due to some lollygagging and to some delightful visits from friends.

The quick update and next steps
The surgery was a success, no cancer was discovered in any of the margins of the tissues removed. Yay! A sliver of muscle, a ridiculously large lump, and 29 lymph nodes were removed from the right side. A small, well behaved tumor, and one lymph node were removed from the left side.

The next steps are occupational therapy, and then 6 weeks of daily (Monday through Friday) radiation. I have limited the range of motion, especially in my right arm, from the incisions and the muscle removed from my right pectoralis. I need to be able to raise my arms to about 100° for the radiation to hit the precise locations where the tumors were. It is meant to destroy any cancer cells that might remain in those areas.

After radiation, I’ll receive immunotherapy every three weeks and begin a tablet form of chemotherapy called, capecitabine. These treatments are meant to eliminate any stray cancer cells that may be floating around the rest of my body. The ridiculously large tumor on the right was aggressive and needs to be addressed accordingly. Take that, you bully!

The following recounts the surgery details to the best of my memory
The surgery was scheduled for 12:50 on Wednesday, August 9. It was predicted to take about 3 hours. Dutifully, I stopped eating prior to midnight on Tuesday, August 8, scrubbed myself clean with special antibacterial soap that night, and again the morning of the surgery. Then I got to my 8 a.m. nuclear medicine appointment on time, even a bit early. There, they injected a teeny, tiny bit of radioactive material, with a short half life (as in it would leave my body in a of couple days) into the base of my left nipple. This was used to identify the lymph nodes on my left axilla (armpit) area.

That was a quick procedure, so I checked in for the surgery. After a short wait, a nurse brought me back to the pre operating room, she asked a bunch of health history questions and gave me cleaning wipes with precise instructions on how to once again clean my body. The anesthesiologist visited, explained the process, what drugs would be used, and the possible side affects 👀. Those are foreshadowing eyes.

The surgery time came and went. Thankfully, my people-friendly sister asked the nurses at their station for an update. We learned that the patient’s surgery prior to mine was more complicated than at first believed. Hours passed. My sister and husband left to forage for food. I dozed off and had a good nap. They returned to find that I was right where they’d left me, dreaming of food. Again, my sister asked for more information from the nurses. The surgery for the previous patient was a lot more complicated than they first thought. At this point they the patient who was scheduled for surgery after mine, was sent home. A kind nurse took gave me a paper cup with water and a sponge so that I could have some moisture. With a long, hungry wait in front of me, my family left and I got busy sleeping.

At some point someone said something, waking me. It was my surgeon cheerily announcing herself! I think it was around 11 p.m. We chatted a bit. I made sure that she was up for working on me. Yup! She would have time to refuel while the OR was cleaned. After a short bit, off I went to have the offending bumps removed from lady lumps.

After the surgery
It’s around 6 a.m., I was back in my room and a person from the hospital food service asked what I’d like to eat. Sadly I was feeling nauseated, a side effect that the anesthesiologist had mentioned. Wah! I tried to think of food my body might tolerate. Nope. Nothing stayed down and I was vomiting off and on for most of the morning. The nurses gave me all the anti nausea medications they could. I was only allowed to leave the hospital once I could hold down food. This took me to about noon. A day and an half after arriving at the hospital, I was free to go home and begin the healing process.

Thank you for your patience with my delayed post.

Love,
D’Arcy

😘
D’Arcy

So far so good with the second dose of the new, revised treatment. It was administered on Thursday, June 29. I had a bit of nausea that was remedied by some anti nausea medicine. Over a week out, all hints of nausea are gone.

This week I’ll have an MRI that will bring clarification on what’s happening with the tumors. The most prominent one, nick named “tumie,” is a bit fussy and inflamed. I’d like to think that the therapy has riled it up and it’s in the process of moving on to greener pastures, albeit with some resistance.

Since my last post, I’ve celebrated my 51st birthday with our dear friend, Tonia, over in Port Townsend. She showed us the wonder of Finn River Farm And Cidery where we enjoyed coconut cream ice cream. Then we got to visit our long time friends Clair, Deb, and Rowan, up at Larabee State Park in Bellingham. They drove a long way up from Salt Lake, so a beautiful 2 hour drive was more than fair for us to take to meet them. Plus, I got to meet a dear T’ai Chi friend, C.J.,  in person, whom I’d only seen via Zoom! Finally, we got to enjoy fireworks down at the nearby waterfront.

The weather has been extremely cooperative, especially in light of the severe heat people in other parts the country and planet are experiencing. ✨🌧️✨ May relief happen soon for them!

Matt with Rowan, the son of our friends Clair and Deb, who drove up from Salt Lake through very challenging Seattle traffic, to beautiful Bellingham.

Thursday, June 8 The revised treatment is actually not liposomal doxorubicin, it’s a similar drug, still red in color, called epirubicin. And this time, it worked! In the clinical trials, when participants had a reaction to doxorubicin/adriamycin, they would be given epirubicin.

If I understand the plan correctly I’ll have two more infusions, three weeks apart. Then I’ll have a recovery period, and then surgery. Somewhere in there will be an MRI to see what the tumors look like, ideally shrunk, and maybe an echocardiogram to make sure my heart is cool with all this chemo business.

Yesterday, Friday, June 9, with the premed steroids still coursing throughout my body and a day off from work, Matt and I took the opportunity to visit Meerkerk Gardens It’s about a half an hour north of us on the island. Here are a few photos:

A view of Holmes Harbor.

Peep!