Thanks to all of my supporters who are still helping me get through each day! All the cards and messages bring a smile to my puffy face!
So, this kinda blew me away: WordPress recently named my blog one of the “Blogs of the Day,” which they describe as a blog that has gained the most in popularity! I was #100, and so shocked to be on their list 🙂
OK, so here we are at Day 88 post transplant, and I can hardly believe it as I write. Day 100 (March 24) is quickly approaching, which will be a great milestone to reach, but I have a feeling not much will change with my current sitch ~ maybe less frequent visits to City of Hope, maybe I’ll get my PICC line out (if Dr. F is pretty certain I won’t need anymore transfusions of blood or platelets), maybe less meds, maybe fewer dietary no-nos, and maybe fewer social restrictions. One thing that for sure will happen right around Day 100 is my fifth bone marrow biopsy – wooo hooo! Can’t wait for that! I still have the immune system of a newborn and no protection from any immunizations I’ve ever had, since that was all blown away by the chemo. At the one year mark (December 14), I will begin to get re-vaccinated with all of the shots I’ve had in my lifetime – wooo – the f – hooo! Can’t wait for that, either!
My parents drove me up to COH for my visit last week (Todd was at a Semester at Sea board meeting), and they got to meet Dr. F, who could be Steven Spielberg’s much better looking twin. He smiles and laughs constantly, and is always positive. He calls me ‘kid.’ My parentals agreed with me that he is AMAZING, and on the ride home, we had an adoration fest for Dr. F. My scores from that meeting were great, actually the word Dr. F used was FANTASTIC – maybe I’ll call him Dr. Fantastic from now on… yeah, I kinda like it. Has a little 007 ring to it 🙂
My Fantastic scores from March 7:
Hemoglobin: 11 – seems like I was always transfusing around 8-9. (normal for a female is 12 – 15.5)
White Blood Cells: 6,300 – a far cry from when I Blutarskyed at 0.0! (normal is 3,500 – 10,500)
Platelets: 174,000 – my all time low was 9,000, when I had to officially retire from knife juggling – the risk of bleeding to death was too great. (normal is 150,000 – 450,000)
LEASON’S MARROW’S GOT SKILLS!
Bubble life is so exciting, I can hardly f-ing contain myself! Check out a typical day and tell me you’re not jealous as hell!
10am wake up (well, maybe this part has you a little jeal)
I’m using various meds to help me sleep, and they produce the most amazingly vivid dreams, but these are interrupted when I get up 5 or 6 times a night to pee. In the morning, when I get up and it’s light outside, I do a double take at the bald creature in the mirror and at that point, the dreaming’s over. I’m snapped back to reality likety-split.
10:10am wash hands/breakfast
This usually consists of cereal (no nuts allowed) with skim or soy milk and toast with avocado and garlic salt, but no pepper – not allowed on the f-ed up low bacteria diet. Oh, and only smooth skinned avos that have been scrubbed with soap and water) 🙂
10:20am wash hands/morning pill popping
I take these down with one of the liters of water I’m required to drink a day: Acyclovir (anti-viral), Amlodipine (blood pressure – I have very low blood pressure normally, but some of my other meds make it go very high), Magnesium (I’m low), Mepron (for the lungs – this is the bright yellow liquid that resembles lacquer in every way – it is the most heinous thing you can imagine), Pantoprazole (antacid to help stop all these other drugs from tearing my stomach apart), Prednisone (steroid – trying to beef up my biceps), Tacrolimus (immunosupressant which helps my body play nicely with Leason’s marrow), Ursodiol (liver/cholesterol), Voriconizole (anti-fungal)
I then wash my hands again and brush my oh-so-sensitive teeth and rinse with prescription strength Biotene mouthwash and Nystatin (anti-fungal for the mouth)
10:30am shower (after covering my PICC line with Saran Press n’ Seal) and change into sweats (usually UNCL) and a fresh new beanie
11:00am wash hands
11:05am sit down at my computer to catch up on emails, Global Grins biz, Facebook, etc.
1pm wash hands/lunch
I usually have soup or a sandwich, but no lettuce or tomato is allowed. (I would rather be attacked by hairy spiders than eat a tomato, so no big.) I down another liter of luke warm tap water with my lunch.
1:30pm wash hands/afternoon pill popping
As of now, I only have one pill to pop in the afternoon: another Ursodiol
1:40pm wash hands/prepping for dinner/UPS package interceptions
I have lots of cookbooks, but for some reason, I’m obsessed with Zov’s cookbook lately, and every meal has been fantasmic! Beef Stroganoff, Meatloaf, Swiss Chard with Lemon and Pine Nuts, Marinated Beef and Chicken Brochettes with Homemade Tzatziki Sauce, Roasted Cauliflower. Not just so-so. I’m telling you – DELISH!
3:40pm washing hands, movies, sewing, reading, what ev
5pm beach walk with beanie, mask and boots
This is my chance to get some fresh air and have some fun with my newest obsession: Crushing mussel shells and sea weed bulbs that have washed ashore with Ugg boots. I love the sounds they make and the feeling of power 🙂 Todd runs interference between me and any dog that comes our way. We regularly see dolphins, sea lions, pelicans, sandpipers, stand up paddlers, surfers, and skimboarders. Lately, we have hit it just right with really low tides, but last week, the tide was coming in and we weren’t paying attention, and the surf got to within a few inches of us, so we were forced to climb up a sand burm to escape getting drenched. It proved that I’ve still got some serious speed, even with my f-ed up hematoma. Have I mentioned that HAFATS? (Hematomas are Fugly and they Suck)
6pm wash hands/dinner
Well done protein and cooked veggies a la COH low bacteria sucky diet. Thank God Zov has lots of tasty recipes that oblige.
6:45pm wash hands/evening pill popping
Acyclovir, Magnesium, Mepron, Tacrolimus, Ursodiol, Voriconazole
7pm tv with feet up
Have I also mentioned IHFATEOML? (I Have Footballs at the Ends of my Legs) I’m becoming quite concerned that the heaps of shoes I have ordered online and successfully transferred from the UPS man to the back of my closet undetected by Todd are not going to fit when the time comes that I can actually wear them!
9:50pm change (or not) for bed, more brushing of sensitive teeth, mouthwashing with Biotene and Nystatin
10pm wash hands/bed time pill popping
Bring on the dreams! Damn it – I have to pee 🙂