erinoka @erinoka - Tumblr Blog

My neighbor let me pet her granddaughters bunny Coco, and she pet my head so it all worked out really haha (for real the SOFTEST bunny).

Wound care this morning was good! She cauterized it with silver nitrate and gave me good bandaging supplies and sending me more. Good tape etc. There is some blood in the bandaging, but it's not more than last check several hours ago now and my Oncologist believes it's just from some irritation where she cauterized it. Had labs done. All my numbers are good (liver function, kidney function are good etc) save for my platelets dropped AGAIN which is annoying him (& me). My white cells are coming back up which is good. So, he thinks the wound may be the issue with the platelets. He has me stopping taking the chemo for a week to let the wound try and heal some. I'll have labs done in Londonderry next Friday (immediately after free massage #2 in the same building) and they'll confirm if I can resume pills on the 28th, which is the plan right now. I'm tolerating the oral chemo well, but the platelets are the issue. I'm having no other side effects save for my hair is turning white (& I'm getting like fine white mutton chops which made him laugh when I referred to it that way, and he went, "wait... what??") My platelets aren't dangerously low a la IV chemo, but what bugs him his they keep trending down vs. stabilizing or coming back up. But all things considered I'm doing well and we'll work on getting this wound healed properly and go from there. I think what annoys him is I'm tolerating the med so well he'd like to get me up to full dose but can't right now with the platelets dropping. ❤

I had my first PT appointment this morning. I didn't mention this previously, because I wanted clarification and to not spread misinformation, but the therapist I'm seeing is a lymphedema specialist. No doctor had said lymphedema to me, but the sweet lady who scheduled my appointments told me they only have 1 lymphedema therapist and that's how my order was coded from Dr. K's office (why it took a few weeks to get me in). I've learned through everything not to freak out, I didn't have symptoms other than my shoulder/back being a mess. So, to clarify, I DO NOT have lymphedema. Am I at risk? Yes, but I knew that with surgery a year ago. The nice thing is getting ahead of it before it becomes an issue. That all being said, I love my physical therapist. Her name is Jennifer. This is preventative seeing her, and obviously I'm having an issue with my arm/shoulder... which became more abundant during radiation and the positioning of that arm during it. By the final week my arm was shaking over my head, I could barely hold the peg above my head for a few minutes and I needed more help getting it into position, and it would just hurt, ache and freeze on me. The back of my shoulder is VERY tight, the side of my shoulder and my elbow ache from compensating. I've had a hard time sleeping from the discomfort (though made some tweaks so the past 2 nights I've managed some good solid sleep). Arms low I'm good, but raising it is very hard and sometimes impossible, and she said there is an orthopedic aspect to my PT too. She took measurements today, got a baseline range of motion, felt my muscles, checked the tightness of my skin around the whole area including my mastectomy skin etc. She said there's a lot of massage involved in lymphedema PT "you'll like it" haha. She also told me I rock the no hair look (thanks Jennifer, ha). Very personable, sweet, and also a great sense of humor. It'll be good.

Home from consults & dinner. So that pain in the ass tumor is growing, not just fluid like it had been. Left breast tumor is smaller. Lung one is still small, but slightly bigger. Next is 3 weeks straight of radiation to get the bad area in check, then start oral daily chemo after that. Dr. B. (radiologist) said getting treated in NH would be fine unless I really want her to treat me there, but she thinks it'd be easier on all of us to do NH, because it's every day for 3 weeks (15 doses) and the group is really good. And if she really thought I'd be better off in Boston with her, she'd tell me (Kerry reiterated this to me after my consults, that if she thought I really needed to be seen there, Dr. B. would tell me so and push me to make the Boston trips). So we're gonna tackle that, which I expected radiation anyways, and go from there. Side effects should be minor, basically skin irritation, some fatigue. I had labs done to make sure my counts are ok before starting radiation, which they are. While that was going on, Cassandra in Dr. B.'s office called me & told me she got me my initial appointment in Londonderry set up for this Thu at 9am with a Dr. K. They'll do a dry run & map the area and go over everything with me. The appointments are pretty short from what I understand. Kerry said it will take longer to park the car and get checked in than to undergo each treatment. Lots of love to you all XO

Just had labs drawn in Londonderry. Hanging out, will know in about an hour if need blood. They'll page Dr.'s office with my counts and see if he wants me to get blood today, which that won't be til 1 if I need it and can leave and come back if necessary. Same drill Fri.

Barely in the door and he circled the couch chirping. Now purring on my foot. Last night he wanted to be ON me and I had to keep him off my stomach. Done day 4. One. More. Day. #TherapyCat #Bewtstagram

Dad's pics of part of my AMAZING care team startling me with last week sweetness. The mask is one of the Katies, Melissa (blonde), Kim then Kerry. Melissa's mom made me the blanket & there's a cake & "pretend champagne". I love these people so much.

You could say 2017 was a bad year, but you know..... I’ve learned a lot about myself. I can handle A LOT and be calm and okay and just tackle the really awful scary stuff.... but more than that... I’ve been overwhelmingly and constantly humbled over and over and over again and my family and I have been inundated with nothing but pure compassion and love. How could I ever be sad about that? I’m in awe. Our family, our friends, strangers, my medical team.... it’s absolutely wonderful and, legitimately, it makes the overwhelming not so bad and I cannot thank you all enough, there’s just no way. Please know I appreciate every single kind thing, gesture, and I hope everyone has a safe, happy and healthy 2018. And seriously, humor.... never take yourselves too seriously, because that’s no fun 😉 ♥️ XO

Another long day... had an MRI at 7:20am, CT scan at 10am, and met with my oncologist to go over said scans. Overall my tumors are responding, but the one in my lung is slightly bigger (previously it too had gotten smaller). The tumor over my mastectomy wound is bigger (which I've noticed and talked with them about last round, they can bleed into themselves), but they believe on scans it's fluid, due to treatment and has cystic changes to suggest that. The one in my lymph node (right armpit) is smaller. He didn't have MRI result back on left side yet, but no noticeable increase. It hasn't spread to liver or bone, nothing new showing (which is obviously good)... So we're gonna do all 6 rounds of chemo, Tuesday starts round 5. I need blood tomorrow when I go back for my mouth med (hemoglobin low) plus another med I get every 3 months is due. He's going to consult with my surgeon and radiologist to discuss, well, radiation/surgery options. Overall he's pleased with my most diseased areas responding and it was another overall good news day. ❤❤

My friends are so good to me, this (& some other things) from @g_macdaddy 🐘❤💚

My awesome mawmma got 🍒 in December

All right up in my lap the second I got home earlier. Til he tried to sit in a box way too small for his rump. #Bewtstagram #NurseBewties #StillACat #HeadButts

Don't let his distance at the moment fool you, he was climbing me earlier including waking me up during a chemo nap to make more room for him cos he wanted to curl up against me (he'd spin, paw and stare at me with them dern cute kitten eyes) #Bewtstagram #NurseBewties #StillACat

Chemo was a go today, though red cells were low so I also received 2 units of blood (I was VERY tired the past 2 days and that explains it). Described it like a yo-yo... boosting counts while giving me chemo that takes them down, because if we don’t I could have problems. Very long day, day ones always are. Kim took great care of me as always and Melissa did my blood draw this morning first thing ❤️ ❤️

We also booked scans and round 5 - there was going to be an overlap with Christmas so I proactively got on that. Right now CT Scan/MRI & meeting with Oncologist Friday, December 21st, Mouth Med Saturday, December 22nd & Chemo Tuesday December 26th - Saturday, December 30th to work around the holidays.

View of Cambridge earlier sitting in Storrow traffic... the play on lights of the car whizzing by in the other direction. Whoooosh. We are home now.

Today I get Paliformin at Dana (bloodwork, then meet with NP then 2 seconds to get that med... I think the 1st 2 appointments are to make me feel better about having to go to Boston because Londonderry will not do this med, which is unfortunate because it’d be way easier on us). Between this med and I strongly believe chewing ice during Doxorubicin (& patient nurses administering it) my mouth was SO much better than round 2 & I only had some chemo stomach issues a few days to deal with. Round 4 of I believe 6 (6 is the most we can do or we’ll damage my heart) is set to start Thursday.

My LL Bean Flannel Lined Pants and Jason's LL Bean Flannel Lined Pants and they're plaid and we match and you know you can't stand this level adorable (I'm giggling & he's shaking his head at me). #GrandpaPants #NowInGrandmaPants

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