I died and was brought back to life by my family and medical team. Not sure I can capture that experience in words. Tim Blanket would like me to elaborate more on my delusional state while in a coma. I don’t want to. It was dark and scary–who wants to revisit that. It bothers me a lot more that he experienced my paranoia when I woke up and that he felt me look at him like I didn’t like him and he agonized that I wasn’t going to come back as my real self. Tim and I have shaken hands and officially said goodbye to Lewis Carroll and Alice in Wonderland which wasn’t so wondrous after all.
All of my doctors have repeatedly told me how amazing my family is and how much they love me. They posted pictures of me all over the ICU, climbed into bed and slept with me, brought me my favorite things…..It makes me sad that maybe everybody’s family isn’t like Blanket and the coconuts.
When I left home there was snow on the ground and now, 8 weeks later, the flowers and trees are blooming. I don’t know if I skipped a season during my Rip Van Winkle sleep but I am trying hard to catch up and family is filling in the blanks. I am cognitively back, but with some word finding and memory loss problems. Physically not so much. I spent two weeks in acute rehab where I learned how to stand, walk, roll over, use a fork and spoon, swallow, write my name, type and get ready for home. Three hours of therapy a day–fabulous plus dialysis 3 times a week. I was very determined to get off of that–it sucked!!! Now that I’m home the real challenges have begun. I am limited to downstairs with my walker and need someone with me to be outside or climb stairs. I’m normally pretty independent (really Barb? had no idea…) and not especially enjoying these restrictions. I can’t open jars or bottles–fun when you take 13 medications daily, buttons and snaps still flummox me, any kind of writing, and small motor movement trap me. I am also not in the position to take risks although I am usually a risk taker (except for roller coasters–they should be banned). I can’t afford to fall and end up back in the hospital and I still have daily bouts of black out dizziness if I am up and about. I continue to lose weight despite all the ice cream and milk shakes and have progressed from pajamas to work out clothes since nothing much fits. Fortunately I have an unbelievable support system and lots of visitors to check on me and food deliveries as well as the visiting nurse, PT and OT. Thank god for Tim, the do everything guy. He promised I would get outside to enjoy the deck/fire pit and with a lot of blankets, he kept his word.
I am sad that I missed several trips and of course Shannon and Elizabeth’s weddings. I have had to rely on pictures. Bridget had a fabulous week in Aruba for Liz’s wedding and face timed daily. Kelsey has been here to help with the physical stuff like showering and taking care of my badly peeling skin (don’t ask). I dream about being able to walk/run and drive a car and do things for myself. I can’t complain knowing I will physically get better and each week will get stronger–a lot of people don’t have that.
I can’t work. I miss work but it is mostly the people who I miss and the fun that teenagers bring with their energy. I miss my advisory kids and tea at 7:30 AM. I don’t miss the day-to-day decision-making and battling that occurs when you advocate for kids with very finite resources, never mind my physical limitations. I have a long recovery ahead and a lot of work to do.
Why am I a million dollar baby? I have had lots of time to think while I stare at the ceiling in the middle of the night. The immunotherapy I had that nearly killed me, cost $12,500 a month and I was on it for 3 months. The chemo drug I took with it also cost thousands. I spent a month in the hospital including a week in a coma in the ICU and I had dialysis 3 times a week and many surgical procedures followed by 2 weeks in acute rehab and lots of ambulance rides while 40 physicians tried to bring me back from the dead and solve the mysterious riddle of why this all happened to me. Since they spent so much money on me I figure I better get better and make the most of myself.
I have also thought a lot about my treatment and the clinical trial I was in. Before this all happened I was definitely in the camp of doing whatever I could to extend my life and fight the cancer, whatever the risk. Now I wonder if sometimes the guinea pig nature of treatment is really worth the gigantic risks. They tend to brush through potential side effects quickly and the media is quick to extol the new, next best thing in cancer treatment, usually immunotherapy, and patients travel far and wide to get it. I guess I have a new-found skepticism about the limits of Science. What’s next for me? I am too weak to start another chemo. Dr. Rachel is hoping that my cancer is “behaving” at the moment and perhaps the immunotherapy is continuing to have some lasting effect. WHO knows? We agreed to a PET scan in 3 weeks to evaluate all of that and then to consider some possible chemotherapies at a lower dose while I build myself back up, including the Erubilin I was on. Obviously I cannot take anything that will cause nausea and vomiting now that I have dropped below 120 pounds. I am tapering off the steroids which are fueling my current appetite and taking Prilosec to protect my stomach so there are a lot of variables and no assurances where this will all lead.
I have spent a lot of time advocating about Metastatic Breast Cancer and why pink-washing is not a cure. I think everyone in my orbit knows how I feel about this topic so I am giving it a rest for now. HOWEVER, I do want to advocate for handicap access. Now that I am handicapped I am incredulous how difficult it is to get around. Outside of the house I use a wheelchair. Last week, at Dana Farber I told Tim I had to go the bathroom. Being Tim, he pushed me to the ladies room, threw open the door and gave my chair a big push. I found myself sitting alone in the middle of the bathroom thinking what the heck did Tim think I was going to do. Some one was using the handicapped stall and not handicapped (really?) Two nice women came in and took pity on me and assisted me in opening and closing the stall door—-with the handicap rails I could transfer myself easily. But, the soap dispenser and paper towels were hard to reach with my limited range of motion. Saturday Tim took me on a scenic ride to Newport to see the ocean. We stopped at a small pub. My walker could not fit through the bathroom door and I had no way to get up after I peed. No way could someone change a baby in there!!! At a food court I had to stay in the lobby while Tim got me a drink because the chair lift was not working —-really? I have no idea why anyone spends any time debating transgender bathroom access——I have never gone in a public bathroom and stripped down naked and I don’t care if you have a penis or not. It seems ridiculous to debate this when handicapped people need more access and Moms (and Dads) need a place to change a diaper. I think government is so out of touch. Anyway…..
I want to thank again all the people who prayed for me, wrote to me, sent Mass cards, food, gifts and love and who have loved Tim and the coconuts too. We are all here together because of your generosity and I know for sure we could not have done this alone. Since I can’t write individual thank you notes(that would take days), I hope you all know how lucky we are to have you. Everything, big or small matters and contributes to my recovery. I can’t put it in words yet.
I look forward to maybe going to the beach once I get my legs working. That is a goal, one of many, LOL. And of course, time with the coconuts and friends doing non-medical things!!!
Love from the hospital ward on Canton St.
Barbara, Nurse Kelsey, Lasagna Bridget and Tim Blanket