Sunday, October 31, 2010
I'm sleepy, sleepy, sleepy. I appreciate all you love and prayers. Keep them coming. I'm visualizing, praying and meditating, bicycling and sleeping. I haven't been able to eat today. Doc says that's part of the deal. James and I watched part of Paranormal Activity to celebrate Halloween and I'm scared. I'm going to go to sleep now. (Reported by James)
Saturday, October 30, 2010
GI issues are in full bloom. I was on the bike, walking the halls and listening to music this morning. I slept a lot today. I generally feel OK as long as I'm not racing like a maniac to the bathroom. James brought me treats, but surprisingly no jewelry. We watched a little of the Rally for the Return to Sanity and/or Fear, which was wonderful. At this point, we're not looking for visitors until I feel better. Thank you for your continued prayers and energy. I feel them and I'm grateful for them.
Friday, October 29, 2010
Thursday, October 28, 2010
I had a tough three days. Lots of nausea today. Had anxiety attacks yesterday and the day before - most of which was a reaction to the chemo. I was sedated for those two days which made it difficult to blog. Bridget, Lyle and Katie visited, and of course James. I had my head shaved by the beautician, here. Tomorrow is Day Zero - the day of the bone marrow transplant which should happen around two o-clock. Please keep me in your thoughts and prayers.
XO B (written with help from James)
Monday, October 25, 2010
I exercised on the bike today and used the hand weights. I did some work, checked e-mail etc. My friend Lisa came by for a great visit, also Lyle came by (after he fixed my scanner at the apt) followed by James. He brought me some good healthy frozen food from Whole Foods. I've hit my limit with the hospital food. Can't do it anymore. I'm feeling a little queezy tonight and plan to get to bed.
Sunday, October 24, 2010
Things are ok here. Still very little discomfort. I worked out a little with weights (James brought me my "vitals".) He also fixed the stationary bike and put up a hook in the bathroom for me. Plus he's doing my laundry every day. Seriously, I'm keeping him! I skyped several times today. It felt great. I did some design work for Lyle and Katie. We skyped the changes. It worked well. Rob Tarbell gave me an assist too. I also did a little school work. It's weird how fast the days go by. I'm glad I brought so much stuff to do.
I'm half way through the chemo. I'm drinking like a fish still. It really helps.
The nurses and care partners continue to be so helpful and careful with me. I've seen Dr. Chung, one of the transplant docs, every day so far. He's brainy and charming. I'm looking forward to this all being a weird story from long long ago.
Saturday, October 23, 2010
I'm still rolling through the drugs. James is moving into the apt. which i looking pretty good. Art makes it home, mos def. I exercised a lot- biking, squats and dancing around and punching (carefully because I have 4 intravenous lines working on me) I am loving all of my electronics. I skyped with my friend and colleague Bill yesterday and my bud Laura. It was just like a visit but without the germs. When my counts are low the docs definitely want me to be isolated. So I'll be skypin and typin.
Lyle and Katie are helping James do the final move and sort out all the electronics (thank God) What a task.
So I still feel good. I met my neighbor yesterday. A 2 year old boy, Jamir (I think). He kept looking at my shoes and I felt a little self conscious. I should have brought some snazzier footware!
Here's some photos of the apt. It looks even better now. These are from the first day we moved the big stuff.
Friday, October 22, 2010
So a good day, overall. I did a little school work (I can't help it!!) and email stuff and learned to edit in IPhoto. Nothing fancy but it's good. Bridget (my fab daughter-i-law) finished drawing the art work for Lyle and Katie's "Save The Date" card. I'm going to work on doing a hi rez version of their mock-up (which looks really great). How happy am I to be working on this?
I walked a little today- not too much of an area is open to me, and did 75 squats. I am going to TRY to stay fit. I'm still drinking like a fish and my port wound in healing beautifully. The nurses are great. Everyone who I've talked to (transplant folks) raved about them and they are right. I love the Dr. Chung. So overall I feel very lucky to have this range and level of support. Medical, spiritual, family and friends. As Larry David would say, "Pretty, pretty, pretty good."
I am still wacky with drugs. So so many! Last night I was on a super dose of dialantin (sp??) When I closed my eyes I could see the stars from outside my house. It was spectacular. I imagined looking at them with James.
I started the chemo today. They have a very firm schedule and they stick to it. They do vitals (blood pressure, temp and oxygen levels) every 4 hours which is ok. The whole idea of "vitals" is significant.I'm drinking water like a fish. The nurse, Len, says I'll be less spacey as the dialantin leaves my system. I'm not a fan of the woozy.
I haven't unpacked yet. I'm still slated to move later in the day.
I took a shower- apparently you are suppose to unplug your med machine before you bath. It was very confusing. They have a chair in the shower too. I asked for a table in there so I could work on my laptop while I showered... Apparently THAT's not ok either.
I'm slowly learning the culture.
On the drip,
Thursday, October 21, 2010
I'm in the hospital and full o' ports. If anyone needs to give me liquids- just plug on in! I'm on anti viral anti fungal anti pneumonia drugs.
I'm in a tiny room with no bicycle but the charming Dr. Chung is going to try to move me, This is the first time I've met him and he's great.
James is here with me. We had a little nap together before I got "ported".
So I can have visitors anytime- just check with me please to make sure I'm not feeling crappy. They say the first 4 days of chemo are ok. I still have hair. I'm going to shave in a few days. (it looks really good - winter hair!)
So far so good.
Tuesday, October 19, 2010
Monday, October 18, 2010
I took my cat scans today. The doc said I should have the results by tomorrow (tues) 2:00ish. If I'm infection free, I'm good to go. James and I moved with the help of a lot of friends and our family. Many hands. The apt. look pretty good. It was a great idea to get an unfurnished place. (I am a little crazy about home stuff). We slept there last night- it felt ok. I need to start packing for the hospital. There's so much to do when you leave for so long.
I'll let you know what's up when I hear something.
On saturday we went to a jewish deli right near the apt "Boychicks" It was deli-tastic! I'll post pics of the apt. tomorrow.
Wednesday, October 13, 2010
I finished my last round of chemo (the easy stuff) yesterday. As my future daughter-in-law, Katie says, "Check!". I'm scheduled for a final cat scan on monday. We've set up the electric, water, gas, phone and almost internet at the apartment. We're set with a truck for the big move on saturday thanks to Rob Tarbell and Anna Von Gehr. Ian and Bridget will employ their awesome bus driving skills to get our stuff to the apt. My brother, Joe, is organizing the "FOB's". (this reminds me of my friend Marla who coined the phrase "FOM" I'm feeling nervous but I also think this is going to be a mix of dreadful and wonderful. I think there will be a whole lot of wonderful. I've been hearing from friends and really feel the substance of their good wishes and very, very real help.
Saturday, October 9, 2010
Okay, so as of today I am set to go in on Oct 21st (thursday) and will have a week of chemo then the transplant. We're planning on moving into the apt on oct 16th. so James will have a place close by to sleep. I started on the anti-viral drugs and anti-monkey drugs so i should be safe from viral monkeys or Monkey Viruses (virusi?). Either way....safe!
Friday, October 8, 2010
Wednesday, October 6, 2010
So the latest is that the donor needs to have some tests updated (maybe because it has taken the Bone Marrow Center so long to do it's paperwork??). This will happen on fri and theoretically the results will be sent to Richmond on monday. In the meantime I'm not taking anymore meds or taking any more tests until I have a confirmed date. My Richmond doc hasn't commented on this yet. I'm on chemo for the next week so I'm hydrating like a fish!