So after 217 days, my trusty little PICC line finally came out of my body last week. It served me well, especially for my 90 days in the hospital, sparing me needle pokes on several hundred occasions, both for transfusions and for blood draws. It even delivered my brother’s life saving super duper bone marrow into a very sick me 🙂 The 38 cm tube was inserted into a deep vein near my inner elbow, and ran upwards, through muscle, around my shoulder to my heart. I loved it while I was having multiple transfusions and blood draws each day, especially those in the hospital in the middle of the night. Grab your popcorn, settle in, and prepare to be amazed as you have a front row seat to enjoy a video of nurse Sallie removing my beloved Peripherally Inserted Central Catheter:
The news that I was to have my PICC removed came with the good news that I am now on an every other week schedule at City of Hope! Dr. F said that this schedule will probably stay in place for the next 6 months. Every visit will include a check up with Dr. F and a blood draw in the main lab with a needle stick, as opposed to the very special, small and cozy VAD (Ventricular Access Device) room, where I got to relax in a giant recliner with warm blankets and no pain, thanks to the PICC. When this whole nightmare began a year ago, I was getting poked several times a week, so it’s no big f-ing deal AT ALL. Stay in the know – be sure to keep tract of all of my procedures here: www.joselynsbrawlwithshulmanssyndrome.wordpress.com/treatment-scoreboard/ I’d much rather not have to deal with these annoying plastic tubes coming out of my arm and wrapping my arm in plastic before showers and needing to have this whole thing cleaned and replaced each week. Now I just have a quarter inch hole in my arm and an itchy patch where the sterile cover stuck to my FUSUOLS – F-ed Up Super Ugly Old Lady Skin.
Now here’s what you’ve all been waiting for: an update on my post-transplant side effects! My football feet have returned to their normal size and shape, although I have always thought feet were fairly bizarre and unattractive. I guess they have a job to do and they get it done, but I’m not a huge fan of their appearance, especially when they resemble footballs. The reason for their return to normalcy is the discontinuation of my high blood pressure meds, which were counteracting another med’s high blood pressure side effect. It seems most of my meds are to combat side effects of other meds. It’s difficult to keep it all straight with my chemo brain. I have problems remembering lots of stuff – I just can’t remember what right now 🙂 The joint pain continues, which is a total pain in the ass. Not really, the pain is actually in my shoulders, elbows, wrists, hands, hips, knees and ankles. I have a very specific temperature in which I feel comfortable. Kinda like Goldilocks – too warm and I get a hideous prickly feeling, too cold and I can’t stop shaking. Recently I got prickles on my head, and I tore my beanie off, started screaming and ran from the room. Todd thought I was an insane freak (I mean even more than usual.) We’re talking suddenly being thrown into a 700 degree sauna tightly wrapped in a cactus tortilla. Still numb left knee. Still fugly hematoma, but it’s definitely gone down quite a bit from it’s original baseball size. Now it’s just slightly swollen, but the scar still LLFRMT – Looks Like Frankenstein Ravaged My Thigh. I’ve noticed certain foods are not receiving a warm welcome into my digestive system. These three particular foods were at the top of my favorites list for my entire life, so not being able to scarf on them totally blows. Fish, chocolate and spicy foods. Sucks.
I was totally stoked to learn of another volleyball team that is honoring me by printing my name on their jerseys! This time, it’s Todd’s team that is going to Louisville in May to play for another national championship title. The guys on Western States Laguna surprised both of us. These “young” men are awesome athletes, who also happen to be super cool people and I so appreciate them thinking of me!
My family met at Gabbi’s in old town Orange last week to celebrate life and it was SO wonderful! I have no photos from the evening, because my chemo brain made sure I forgot, but my parents, Leason 4, Kesha, Andie, Leason 5, Todd, Mychaela, Rex and I shared stories, thanks, hopes and tears. I am recovering from a life threatening disease; my father just successfully kicked prostate cancer’s ass and he was about to go in for a second surgery – this time on his spine to relieve some excruciating pain; my brother, Leason 4 is my lifesaver; Todd is the best caregiver and supporter this world has ever known; my mom is a boulder for all of us; Kesha is a super supportive wife, daughter-in-law and sister-in-law; Andie and L5 are amazing cheerleaders for everyone, sending fantastic cards and letters; and Mychaela and Rex are super strong sources of support, constantly checking in. Gabbi and Ed let us take over their private dining/living room, which was a perfectly beautiful spot for our candlelit celebration. This particular building holds a very special place in our hearts, because for many decades, it was a Buster Brown shoe store, where my father bought his childhood shoes, and my brother and I also bought our childhood shoes. I can vividly remember going in there to buy my new kicks for kindergarten. I deliberated and then deliberated some more. I played with the totally bitchen foot measurer thingy. I sat on the super boss red vinyl stool with the non-slip slanted ramp. I still have my red leather lace-ups 🙂 BTW, my dad’s spinal surgery went very well, and after harassing the nurses quite a bit, he’s now recovering at home. Yay Dad! You’re a stud!
I want to thank everyone for continuing to support me in my recovery! It is overwhelming to receive so many well wishes in so many different and wonderful forms. It helps so much to keep my spirits up. There are two of you that I MUST identify by name: Mary McDonald and Erin O’Brien Meyer. Mary has been there for me every step of the way from the very beginning. She has provided love and support beyond what anyone could imagine, including a weekly pot of her amazing homemade chicken noodle soup, complete with her “Aunt Dottie’s” cheese that she imports from the deli she frequented as a child in the Bronx. Erin has sent me a hysterical card EVERY day since I checked into the hospital. Never missed a day. NOT ONE DAY. Just pulled today’s out of the mailbox. Unreal!
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