Blog
-
Tuesday, February 24, 2009 - 6:26 pm
Exit Meetings & Packing
Yesterday, we had 3 important exit meetings with various members of the medical team to make sure that everyone was on the same page as we leave Seattle.
Blood Transfusion Summary – First, we met with a blood products transfusion RN who made sure we understood the blood types of blood products Michelle would be getting in the near-term and long-term. The reason we needed to meet was because Michelle’s donor cells are a different type (A+) than Michelle (AB+ / universal recipient). Michelle’s marrow is now making A+ cells but she still has residual AB+ blood cells hanging out in her bloodstream (red blood cells have a life of ~120 days). For now, Michelle will continue to get O+ blood products to make sure she doesn’t have any reaction when she gets transfusions. Down the road, she should be able to get A+ blood products. The interesting thing is that if Michelle had some random emergency and doctors had to type her to see what she would need, they would be really confused because she’d likely have 3 different blood types floating around. The good thing is that they would automatically opt to give her O+ blood to minimize any reaction to any of the antigens in her blood.
Transplant Exit Conference – Our next meeting was with our attending doctor, physician assistant, and nurse. We reviewed meds, complications Michelle had gone through, the latest MRI results and the current state of her choloroma (non-existent), the information our oncologist at home would receive, and any other issues/questions. No major surprises here and it was good to tie up loose ends.
Research Exit Conference – Finally, we met with Dr. Delaney, the Director of Cord Blood Transplants, and her research team. It was good catching up since we hadn’t seen Dr. Delaney for a while. We also got to meet more of her team and take a picture with everyone. Michelle became emotional when we left and thanked the team. Seven months ago, we were scared when we thought about not having a donor for a transplant. Today, Michelle is 96 days post-transplant and is heading home. It’s been a long 7 months and so many people have contributed to saving Michelle’s life, but we feel a special bond with the team that took our life-saving cord blood units, carefully grew one of the units in the lab, tended to those cells (even sang Elvis Costello to them), and carefully prepared both units to be transfused into Michelle. Hah, that actually makes their amazing work sound easy. We may not understand everything they’ve done, but we are certainly grateful.
Aside from these meetings, we’ve just been packing and went to a good Spanish tapas restaurant last night (Seattle happy hours are awesome). Michelle hasn’t felt well the past couple of days, but she’s getting two units of blood right now. Hopefully, that does the trick.
Tonight, Mabel arrives to help us finish up tomorrow and escort Michelle on her return flight.
-
Monday, February 23, 2009 - 1:22 am
You have your good days and then you have your bad days
Saturday, Van and I took advantage of the Seattle sun to take a trip to Whidbey islands. We walked along the beach and stopped at some lookout points overlooking Puget Sound waters and the surrounding mountains. It was breathtaking. I could sit there and stare at the calm waters for hours (if it wasn’t so cold). My energy level was great and we pretty much spent all day out and about.
Today was another story. Here were my initial goals for the day:
1. Blog in the morning
2. Get in over 100 fl oz of fluids (my usual goal is 80 fl oz, but Sat’s blood draw showed I needed more hydration)
3. Pack up my clothes
4. Help Van do a dry run pack of the car to make sure all of our stuff fits. We have accumulated a bit of extra stuff over the last 5 months (e.g. Crock Pot, Juicer, pull up bar, rice cooker, etc, etc, etc)
5. Exercise for at least 30 minutes with Wii Fit
6. Shower
7. Meditate
8. Do the dishes
Goals actually achieved: Dishes, Fluids (after I finish this last cup of cranberry juice), blog.
I really wanted to be productive today, but I couldn’t muster up the energy. I have been having a headache all day long. It’s not bad enough where I need to take pain meds. I try to avoid extra pills as much as possible. However, the dull ache in my head just makes me want to lay down. Also, today I’ve been feeling nauseous on and off. I think both of these things are due to my tapering off of one of my two major immunosuppressants called Cellcept (aka Mycophenolate). Instead of 1000mg three times a day, I only have to take 1000mg twice a day. I just started the taper on Friday. In any case, I haven’t actually vomited, but sometimes I feel like I could blow chunks if I let myself. (Personally, I know I have a very quick gag reflex and I have a mental choice of letting it out or keeping it in. I try to keep it in. I’d rather not have to re-take all of my meds. bleh)
I was a couch potato all day and truthfully I felt guilty about it. I kept saying to myself, “Okay in 5 minutes, I’m going to get up and be productive.” 5 minutes came and went, came and went, and I didn’t do anything. I hate slacking off and not meeting my goals (yes I know the old type A Michelle is slowly creeping back in – someone needs to hush her up). When Van made a joke about me not doing my Wii Fit exercise I pretty much lost it and broke down in tears. I confessed how frustrated I was with myself and not being able to physically do the things I wanted to do. Van had to remind me that one of the most important things we learned during our Long Term Care class was that I was going to have my ups and downs and that I need to take it easy. He reminded me that during class the presenter said a patient once mentioned to her, “Every morning I wake up and I never know if I’m going to be the 50 year old in the 90 year old body or the 50 year old in the 50 year old body.” Today I couldn’t agree more.
I’m not going to beat myself up anymore. I’m going to bed now and hoping that tomorrow I will wake up free of headache and nausea, and feel refreshed and rejuvenated. Here’s to a new day.
(Tomorrow is Exit Meetings Day. I have my last meeting with my attending physician and a visit to Dr. Delaney’s cord transplant lab. I’m still set to come home this Wednesday night!!)
-
Tuesday, February 17, 2009 - 6:06 pm
And we’re back (online)! Day +89
It’s good to be online blogging again! Thank you for all of your concerned messages when the site was down.
Like Van said all of my test results are coming back clean. I was especially excited about the negative MRI scans. No leukemia cells in the noggin! I also got my 2nd skin biopsy back and it was again negative for Skin GVHD. Luckily, the spots are going away on their own with the help of the topical steroid cream. My urine sample was also negative for the BK virus and my blood sample was negative for CMV. Today my nurse called me and said that I have been given the go ahead to stop all IV meds.
I had a final check up with the Oral Medicine dentist and he says that I may have the slightest mouth GVHD just based on the coloring of the sides of my tongue and the insides of my cheek. Also the skin on my lips slough off every 3 days or so no matter how much I mosturize them. My mouth doesn’t hurt at all, so he just told me to monitor it. Also when I complained to him that these days foods taste too salty, too sweet, etc. He said that this is common and is a sign that my tastebuds are coming back and that they will eventually mellow out. Interesting huh?
The only appointment that shook me up was with my nutritionist who told me that I have high cholesterol, high triglycerides and osteoporosis. Here are my current lipid levels (taken after fasting…so it’s probably even higher usually) and my levels pre-transplant (not fasting – so it was probably lower) with the normal range in parenthesis:
Cholesterol: 2/9/09: 288 mg/dL 10/15/08: 201 mg/dL (normal: below 200 mg/dL)
Triglyceride: 2/9/09: 563 mg/dL 10/15/08: 199 mg/dL (normal: below 150 mg/dL)
I’m in the high risk category!! My nutritionist reassured me that it’s the medication (cyclosporine) that is causing these increases. Nothing in my current diet could have caused such huge jumps in my levels. Now I have to load up on cold water fish (high in omega 3), fiber (it helps flush out fats), and more fruits and veggies (5 servings a day).
What I was most freaked out about was the Osteoporosis. When I think of osteoporosis I picture older women simply walking down the street, all of a sudden falling down and fracturing their hip bone. Scary! They did a bone density scan aka DEXA and found that there are certain areas in my body that was in the osteoporosis range or close to it (aka “osteopenia”). I don’t know what my bone density was prior to transplant, but I’m sure the radiation, chemo and meds have done a bit of damage to my bones. Fortunately I learned that women continue to grow bone density until they are 35. Soooo I have some time to repair my bones. Ladies, please load up on your calcium, vitamin D and get more exercise!!!!
Again another post that is probably too much info, but I figure this might be helpful to my fellow transplant patients.
-
Monday, February 16, 2009 - 11:51 pm
Website Difficulties and Update
Hey everyone, we’re really sorry that the website was down the past 6 days. Don’t worry, our technical issues did not reflect anything medical related. In fact, Michelle is doing quite well. See our prior post on the bone marrow biopsy results (which were negative) and our tentatively scheduled discharge date.
Since then Michelle has pretty much finished all her exit evaluations with no surprises. Even her MRI shows no evidence of disease! We’re definitely curious about this and are looking forward to seeing the scans this week.
We’ve spent the last few days planning our move back, increasing Michelle’s workout regimen, eating as much food from the cupboards as possible, and going to any restaurants we’ve meaning to go to. We even had a little excitement at the Pete Gross House. There was a small fire in one of the apartments on our floor so everyone had to exit the building and wait for the fire department to come and take care of everything. Luckily, only the sprinklers in that apartment went off so there was minor flooding in the complex. Most importantly, no one was hurt.
We’re still doing a lot of work on the website to get everything back to normal. In the meantime, please excuse the old layout, any bad links, missing blog comments/photos, or generally anything not working.
-
Wednesday, February 11, 2009 - 12:49 am
Bone Marrow Biopsy Results
We got our Day +80 bone marrow biopsy prelim results back. The flow cytometry tests came back negative which we’re excited about.
Today, we had our weekly clinic with the medical team, a bone density scan, and a final dental checkup. At clinic, we spent most of the time discussing Michelle’s skin condition. We talked about the possibility of guttate psoriasis (thanks for the suggestion Jess!), which coincidentally is treated very similarly to skin GVHD. For now, Michelle will be doing a topical steroid treatment and we’ll just see how it progresses.
Along with the good news from the biopsy, we unexpectedly received our scheduled discharge date — Wednesday, February 25th (which is technically Day +97). We’re pretty excited about this since we weren’t sure when they would “clear” us to go. I guess the final decision will be on Monday 2/23 when we have our final / exit conference with the medical team. Crazy stuff.
Tomorrow is a busy and long day. A couple of research protocol meetings, a 90-minute infusion at the hospital, an OB/GYN clinic, and a MRI to see what’s up in Michelle’s noggin.
It snowed today in Seattle. Seattle’s been good to us but we’ll be happy to be back in Cali.
