To say the last two weeks were crazy is an understatement, but we got through it like champs!

Huge thank you to my in-laws that stepped in while Andrew was out of town. Between multiple doctors appointments for myself and my son, everyone stayed afloat, barely and not without lots of help. We also managed to all get the stomach bug which added to the insanity. My sisters and niece arrived in the middle of our bug and so far only one has gotten sick. I am thankful they haven’t been scared away. But sharing is caring right?

Results are in: colon looks healthy enough to continue with treatment. The inflammation thats on the CT isn’t due to immunotherapy which means we don’t have to hold any treatment at this time. Yay!

I also had a neck MRI last week which showed a bulged disc. No big deal in the grand scheme of things.

Thanks for the prayers and well wishes friends!

Xoxo

Last weekend you may have noticed that I posted a lot more photos on social media than I normally do. I attend a conference called YSC Summit 2019. This group (YSC) is all about connecting women (and men) diagnosed with breast cancer before the age of 40. There was about 600 participants and I had heard that those of us with MBC made up almost 10% of the whole. I met some other really wonderful young people living and thriving with MBC. Some folks were newly diagnosed and some are YEARS out. It’s inspirational to say the least to see most of these women thriving despite our cancery bond.

Group photo

This year the Summit was held in North Austin, TX. I didn’t get to really see Austin, so I need to go back. Just not on a Sunday because you can’t buy alcohol on Sunday?! 😬😉

While at the Summit my roommate was my friend Misty. She was diagnosed a couple of years before my first diagnosis in 2016. We were friends before cancer – our kids are what brought us together in Eugene. Then after Misty’s diagnosis and then mine, we found another way of connecting with one another. Bittersweet really that we have this other connection.

The conference itself was decent. The keynote speakers were great. They spoke about the collateral damage (CD) of cancer. I have had a blog post titled Collateral Damage in my drafts folder for weeks now. And just a couple of weeks ago I also came across a great blog post also all about CD. If you don’t know what I mean when I talk about CD I promise in the future I will finish that post and you can learn all about it. Cancer is an inconvenient bitch and it never stops taking, which is the basis of CD. I don’t like the focus that much on CD because it often feels like complaining, and it isn’t positive. Most of the time though I can be positive and compartmentalize the bad/ugly/messy parts of cancer.

I also got a chair massage at the Summit, ate some delicious tacos and Texas BBQ, attended a meditation session, and spoke with lots of vendors at the expo. Fun short trip to some warmer temperatures 🌞

Results are in! More shrinkage 😂 saying that really never gets old.

My oncologist is super pleased with the total reduction in size. She said it’s like A+ work. I definitely cannot take credit outside of making sure I take my meds and show up for infusions.

Today we celebrated the scan results and discussed a few other things. My thyroid is slowly moving back into the normal ranges. It’s closer with every visit.

The scans showed some thickening is my colon. It’s mild, but apparent enough to be referred to an gastroenterologist. I will consult with them but I will likely have some testing of my colon tissue in my future. My oncologist isn’t overly concerned about it, but we want to figure out why this thickening or inflammation is happening. There are plans in place once we figure out whether it’s due to the immunotherapy or the abemaciclib.

My neck has been really bothering me lately. As have my hand joints. The pain in my neck and hands could be related or maybe not. Also, sometimes an AI can cause joint pain, which my hands and neck are all joints. We have to do some further investigation. I will have an MRI of my neck just to see if there is some obvious reason for the pain.

And finally today we made a plan to deal with my lack of decent sleep. I have been having lots of hot flashes at night and the neck pain isn’t making it comfortable for sleeping either. I have had a harder time falling asleep, staying asleep, and waking rested. It’s frustrating! I have been taking melatonin and magnesium at night but still haven’t had a successful nights sleep in a while. I was told to increase the melatonin I was taking (as much as 7mg more each night) and also to use Ativan every few night if I need it.

I started working out again, very lightly. My ultimate hope is that exercise will help me gain some energy back during the day and help me sleep better at night. We shall see!

Thank you for all of the sweet emails, texts, and cards you have sent me this last week. I really truly love each of them!! You are the best group of cheerleaders a MBC gal could ever have.

I added another infusion to the books today. It’s been 4 months and 11 days since my first infusion of pembrolizumab and there’s so much to be grateful for. It’s a YAY-day! Xoxo

My daughter joined me on the trip down to Boston yesterday. I was going down for scans, and we decided to call on Camp Kesem (CK) counselors and use this camp perk called Kesem by your side. Two of her CK counselors met us at Dana Farber (DF) and took her out to brunch and to the MFA all while I was taking care of cancer stuff.

My daughter has been having a harder time with worries since September. It’s the collateral damage that comes with a cancer diagnosis. It’s so hard to see your kids struggle in general, but these worries and struggles feel so big and unfair. One thing I have learned while parenting through cancer is that normalizing their experience helps make some of those worries less big. I wanted to bring my daughter to DF to remind her that it’s not a scary place and that Boston isn’t just the place we come to for cancer care. My intention with bringing her to Boston was to ease her worries and help her feel loved. That’s the normal I want for her.

She got to hang with some amazing college students and see some of Frieda Kahlo’s works at the MFA. She got to be a kid enjoying a city. Her experience was fun and normal – she was a kid without the worries of a parent with cancer for an afternoon.

Camp Kesem is such an excellent resource for our kids dealing with a parent that has cancer. I cannot express how lucky we are to have access to so many CK camps in New England. We attend the CK associated with MIT, but there are a handful of others in our region.  I hate the reason the camps exist, but I love that they do exist and help our kids be kids and shrink those worries for some time. Indeed, CK is a magical experience!

Here’s my shameless plug: Kids get to attend CK free of charge. These visits with the counselors outside of camp are also done without any charge. I am so impressed with the college students that choose to give so much of themselves to CK kids. And I am equally impressed with how the CK kids care for one another. These bonds and friendships are special and lasting. None of it could happen though without donations. Here is comes 🙂

Help ‘Make the Magic’ for kids like my daughter (and son in years to come). Come to the gala or make a donation. If you can’t give financially, spread the word about this camp. There are locations all over the US. We all know someone dealing with cancer, and if that someone has kids, they need to know about CK. The parent doesn’t have to currently be in treatment to qualify kids for attendance. We sent my daughter last year, and this was before I had my MBC diagnosis. I know she still felt the effects of my early stage diagnosis even though it wasn’t in her face every day. She went to CK to meet other kids dealing with this same stressor. Camp is normalizing her experience. Such a gift.