Five and Done

It has been duly noted that not being updated is making some of you anxious. If you are ever in need of reassurance or just need to hear my lovely voice, for crying out loud, call me. You are not bothering me. I assure you, if I don’t want to talk I will not answer the phone.

After a lovely weekend with Sara and the Indoe family, I had a nice quiet Monday, with my 4th dose of radiation, and concluded that treatment with the 5th dose today. 

I was doing great until yesterday afternoon when I suddenly felt like I’d gone a few rounds with Muhammed Ali pounding the crap out of my left side.

The radiation, like many cancer treatments, tends to make one worse before it makes you better. And I was feeling much worse for wear when I woke this morning.

I popped an eight-hundred mils of ibuprofen, and a few hours later off I went to my last app’t. While I was there I asked to see the doctor since I was becoming apprehensive about my biopsy scheduled for Wednesday (we have to be in Boston at 6:30am) after being in considerable pain this morning, I feared tomorrow would be unbearable. 

Oxycontin to the rescue. I’m guessing that will be a recurring theme. 

Tomorrow being biopsy day means Paul and I will spend a lovely morning together. We do so enjoy this alone time. At least it is early enough to avoid rush hour traffic. 

Then at long last I have Declan Thursday! I haven’t seen him since the morning he spent with me at the ophthalmologist…geez, was that really only 4 weeks ago?…and I can’t imagine what he is thinking happened to me. 

I am well supplied with a new group of Dinos for the Dino Compound we started out back, and his new crafting medium, pipe cleaners. Which really means him saying “I’m going to make a turtle,” and then handing me everything. 

I’ll update you after my app’t with Dr Juric on Friday.  I should be starting the meds and learn more about the clinical trial, though I don’t think my participation can be determined until the biopsy results are in. 

Radiation Station

I met Dr. Jim McIntrye on Tuesday. He’s my new radiologist. Luckily for me I don’t have to go to Boston for my treatments since they have a lovely cancer center over in Danvers.

Jim is a chatty fellow. I learned more about his family in one meeting than I’ve ever learned about doctors I’ve know for decades. He’s also a hugger. Which is okay with me, huggers live longer and that is our goal.

Today I had my first dose. One down, four to go. Annoyingly they are at one o’clock in the afternoon. Cancer is very inconvenient.

A lovely young women reached out to me (I signed up to be notified of pertinent clinical trials) to participate in a fatigue study of patients taking Ibrance. It’s a seven week study that takes place over seven months that consists of questionnaires, wearing a special sleep watch and a Fitbit. Easy peasy, and they pay you small stipend, and I get to keep the Fitbit. This cancer thing is really paying off!

Dr Juric called to tell me they decided to biopsy the lymph node under my collar bone. Soft tissue is a much better material to type than bone. It shows up well on the PET scan even though they can’t feel it. Waiting for that app’t to get settled. And he said the insurance company had approved my taking Ibrance. I’ll see him end of next week and finally get going on the drugs. Woohoo!

I’ve had a migraine off and on for three days now. It seems related to the lesion on T8 causing me pain, the one they are radiating. It can take weeks for the full effects of radiation to take effect. Let’s hope I don’t put an ice pick through my temple before then.

I started driving again since the fluid has decreased a bit in my right eye. The distortion isn’t making me queasy anymore. I’m not sure I want to drive to Boston myself yet but the local roads I can drive in my sleep were no problem. I assure you my vision is clear and I’m not endangering myself or anyone else, it was merely a motion sickness issue.

Thank you all for messages of support and love. It means more to me than I could possible express. Huh, you shut me up. Keep up the good work.

The Cancer Chronicle

Seriously, after having a double mastectomy you start feeling a little secure thinking you are finally free and clear. Even though that surgery was at the behest of a recurrence of the breast cancer I’d been diagnosed with six years previously, I truly was surprised when the ophthalmologist broke the news to us – you have cancer in your eyes.

I’ll recap for those who haven’t read the post on Facebook. The rest of you feel free to skip ahead…

July 11, 2019 – edited for brevity.

The third week of May I began suffering terrible migraines and had a shadow in my right eye. I ended up at the retina specialist thinking I had a torn retina. After a full day of angioplasty, ultrasound and many many photos, it turns out I have lesions in both of my eyes. Tiny little tumors, specifically, metastatic breast cancer.

An MRI and a PET scan later reveal many (13?) small lesions (cancer) on bones in my shoulders, in lymph nodes under my collar bone and breast bone, on four vertebrae, and on my pelvis and femur, besides the lesions in both my eyes.

I am fortunate in that I have the best medical institutions at my disposal. I am now, thanks to Jen, under the care of a team of doctors at Mass General Hospital.

Do not believe the appalling statistics concerning MBC. I am not a statistic and they do not necessarily relate to me, or my prognosis. Please read Jay Gould’s essay “The Median Isn’t the Message,” which sums up my attitude on that subject.

No worries, I’m not going anywhere just yet.

July 15, 2019

That catches you up to this weekend’s turn of events. I began experiencing a constricting ball of pressure in my mid-back. After exploring the usually litany of ailments I suffer from, I came to the conclusion that the pain must be from one of the tumors.

Today’s visit with my radiology oncologist, Dr. Rachel Jimenez, confirmed as much. She has arranged for me to have a short course of radiation, five doses. I’ll be going to MGH Danvers, thankfully avoiding the drive to Boston for those six visits.

My medical oncologist, Dr. Dejan Juric wants to start meds asap. We are awaiting blood biopsy results. The clinical trial drug will have to wait til I have bone biopsy.

I’m not sure if it is being put off until I have the radiation or not, but we are still awaiting a biopsy app’t. They will be going in to my hip for that one. They need to type my tumor (previously ER+, HER2-) in case it has changed/mutated and they need to do a further study for a new receptor panel.

The two drugs I know I’ll be taking are Fulvestrant (Faslodex) which is a medication that blocks and damages estrogen receptors that is sometimes used in the treatment of metastatic breast cancer. And CDK 4/6 inhibitor palbociclib (Ibrance). I’ll tell you about the third clinical trial drug when I find out if I can take it. I’ll write more about the drugs when I start them.

I also have an app’t with MGH’s oncology ophthalmologist to check in and get him on my team. For now, I don’t need any other treatment but the hormone regime for my eyes.

Basically, I have an incurable disease that we’ll treat as a chronic illness. As each symptom appears, it will be evaluated and treated. Currently, I have breast cancer tumors that will be treated with a cocktail of drugs that could put me in to remission, or partial remission or in the least, halts the progression. The radiation will kill the lesion causing me pain.

Then we wait.