So Far, So Good

My apologies for the delayed update. The longer I go between them the longer they get! My last post, August 3rd, seems forever ago. I’ve already had eight doses of my new drug regime since then…let’s catch you all up.

There was a little confusion around the first appointment on August 14th. I hadn’t been well briefed on what would be transpiring other than I was starting my meds, and I have to take some responsibility for that since I never ask questions.

Upon arriving my coordinator came to fetch us since she’d moved my app’t to The Henri and Belinda Termeer Center for Targeted Therapies. On the walk down she was chatting away when the phrase “…since you’ll be here all day,” caused both Satin and I to gasp…”What do you mean all day?”

Poor Satin, my escort for Wednesday’s app’t, ended up toiling away at MGH for eight hours with me. Thank goodness she was there to entertain me though. I would have been a lot less easy going about it had she not been present to keep me smiling and laughing.

Once we had that little detail ironed out things moved along to meetings with my oncologist’s PA, my research RN, and the afore mentioned coordinator. I had several ECG, and enough blood drawn to fuel my own bank.

The lengthy app’t was due to a four hour window required between labs. Fortunately, it’s only the 1st dose that requires it. To while away the hours Satin and I visited the roof top garden, which is lovely. The view is out across the Charles River Basin and takes in the Boston skyline…stunning.

To Make a Long Story Longer

I discussed the drugs in my last post, what the intended effect is, and the possible side-effects, so I won’t reiterate those. Nothing much to report, so far so good. My blood work yesterday was nearly normal, just a slight drop in white blood cell count, though my blood sugar went to 133 – that leads to another story I’ll get to in minute.

They seemed surprised my blood sugar was that high. I eat a Keto diet and we expected it would keep my blood sugar down. That, however, wasn’t the first surprise we had that day or the last.

Just When I Thought I Had It All Together

I was feeling all confident and spunky, intending to drive myself in to Boston for the first time since I started treatment. I was about to depart, and the last thing I do before leaving, is pack my drugs in its ice pack, zip it closed, and grab my tote bag.

I head out to the garage, get in, and the brake won’t depress, and the engine won’t turn over, and the lights–I’ve never seen before–pop on.

Are you fucking kidding me?

SOS call to Satin, SOS call to Paul. Satin wins? She rushes over to get me. We arrive in Boston a half an hour late. My coordinator assures me it’s no big deal. I am ordered to relax. Grumble, I hate being late and I hate dragging Satin away from her niece and nephew day (and yes I know you are happy to do it… thank you, I love you).

Once settled into my room with the staff, I regale my PA, RN and Satin with last weeks hi-jinx.

Oh. No. You. Don’t.

The previous week Donna had suggest I try Excedrin for the migraines I’ve been plagued with since May. Lillian and I pick some up next morning, and after that days app’t we settled in at home with lunch. I read the box aloud to her, scoffing at the ingredients.

“Acetaminophen, oh that never works for me. Caffeine, that’s the same amount in my tea. Ah, aspirin. I haven’t had that in years. Maybe that will work?”

Feeling skeptically hopeful, I take two in hand and, bottoms up!

Two hours later, I’m sorting laundry, and I realize – I do not have a headache.

It’s a miracle. Not only do I not have a headache, I don’t have any of the lingering aches and stabbing pains that I have relentlessly experienced since May.

I marvel at this new turn of events. Bless Donna, she is a genius, I will never doubt her again. Then, mid-detergent dump, I pause…Hmm, am I peeing?

Why yes, yes, I am. (No worries though ladies. If you have not tried Icon undies for bladder leakage or Thinx period panties I whole-heartedly recommend them).

My lack of bladder leakage fear aside…what fresh hell is this?

This is not on the list of side effects for ANY of the drugs I am taking! But, I do have a little trouble with caffeine and urgency.

OH. NO. YOU. DON’T.

Life? I hardly think that curing my migraines is a fair exchange for the loss of bladder control. In fact, given everything else you’ve thrown at me, this seems patently unfair. This is totally unacceptable.

No worries, it ended there. I haven’t had any problems since then.

That is the story I related to the ladies. I had them rolling. It was very funny. Donna couldn’t wait to tell Dr. Juric just so she could hear his laugh (he’s a hearty laugher). She asked if I’d take the Excedrin again. Yes, but only if I’m wearing my Icon undies.

I like these people a lot. Which is good seeing as how I might be stuck with them for the rest of my life.

Who Left That There?

Satin and I departed, leaving behind an air of mirth. We head to Medford for lunch at Tenoch, a Mexican place. It was delicious. We decide to get some work done at Battle Ground.

While I am sitting here yesterday (as I am now as I write this) I am thinking of earlier, and what a coincidence it was that my car was dead and I had to go into the house where I found my drug bag sitting on the counter.

What? I know! I said the last thing I did was zip the bag, grab my tote, and leave, but as I discovered as I waited for Satin to arrive, I had not put the ice bag in the tote. Sigh. What the hell is wrong with me (a rhetorical question at this point)?

Not So Fast

I was here yesterday at Battle Ground, recalling that incident when a fricken light bulb went off over my head. The last thing I did was take an Ibuprofen.

Ohhhh, Noooo!!!

Do you know what you do when you take Ibuprofen? You eat something. I had 6oz of almond/cashew milk.

Ohhhh, Noooo!!!

What have you already learned about my day? My blood sugar was a bit higher than expected…because it’s supposed to be a fasting blood test you dope. Guess what I did last week too? Ate before my labs. What is wrong with me??? Yaya, cancer, stress, whatever.

I have been fasting 5 days a week since April. What are the effing odds the one day of the week I need to have been fasting that I have eaten something? Two weeks in a row?

For crying out loud. Now, I have to email them and confess my sins.

Coordinator laughs at me, and once again orders me not to stress. But still, screwing things up is getting tiresome.

Tying Up The Loose Ends

My car battery, was just old, dead and unrecharable, AAA replaced it. NBD.

The blood sugar wasn’t high enough to trigger a protocol response. PA decided to wait and see where it settles…I promise I will be fasting next week so it should be lower.

One more thing, I didn’t reveal this widely because I was having a hard time processing it, and I didn’t want anyone to be overly concerned.

Nothing has changed. My treatment is still the same, my expectations for positive results are still the same. The only thing different is a more accurate count and placement of the tumors.

The CT I had August 2nd revealed about twice as many tumors as we previously been aware of. Nothing was done incorrectly, each test is unique and has different abilities to see the tumors. I wasn’t surprised by the results since the previous reports alluded to other tumors. But I’m human, it was scary to read I have twenty-six+ tumors rather than the thirteen+ we’d been briefed on.

As I said, this changes nothing. All the tumors are being treated by my drug regime. Overall, I feel pretty darn good. I might be experience a slight change in the taste of food, and a dry mouth, jury is out. It’s hard to tell sometimes if what is occurring is a side effect or the Mexican food I ate for lunch.

My spine seems extra achy today, but I didn’t sleep well last night. Those of you who live around here likely experienced the acrid smoke from the N. Andover fire. It kept Paul and I up all night after the smoke settled right over our neighborhood,

I think that’s enough for now. I will try to be better about updating so you don’t end up reading another novella length post.

Next week I have my second injection of Fulvestrant, an eye app’t, and two days of lab work. Best of all though is Kayla and Chris’s wedding is Labor Day weekend and Declan will be wearing a kilt! I’m sure we’ll all die from his adorableness.

Love to all.

Comments

  1. KAYLA C DANEHY says

    I am so glad that my baby brings you so much happiness because you do the exact same to him and me and know I am crying at work while I type this like a weirdo….Love you to the moon and back!! xoxoxoxo

  2. Satin is da bomb and so are you. Was this not also the same week as a hurricane happened in the middle of work at Battle Grounds? Love xo

  3. Brenda Favreau Marcoux says

    love you

  4. Lynne, if you ever want company at MGH, let me know.

  5. Deb Borden says

    Lynne,
    You are an amazing and strong woman. Thank you for sharing, especially the bladder part. I love that you keep it real and that you can make jokes in the midst of everything. I wish you all the best in this journey and I hope that your story helps someone else who is experiencing similar. I am following your chronicle and rooting for you from many miles away. You’ve got this!

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