Sunday, September 28, 2008

Thank you to everyone who helped Heather and Dave this week!

Hello Everyone,

This is Michele, Heather's sister. I spoke with Heather yesterday and she asked me to post an update. Don't worry, she is well enough to update herself, but no longer has access to a computer.

Heather is back at Johns Hopkins. Early this week she became ill and was unable to participate in rehab. Initially the physician at the rehab hospital thought she had a sinus infection. On Friday she went to the ER of Washington hospital and it turns out that instead she has pneumonia. After this diagnosis she was transferred to Johns Hopkins where the physicians confirmed this diagnosis.

For those of you who may be confused, as I was, my understanding is that the drug Heather was taking to try and stop the continuation of her paralysis to her upper body, Avastin, is essentially a form of chemotherapy. Given this, after Heather takes Avastin, her immune system weakens and leaves her open to contracting things like pneumonia. Given the state of her immune system, she has been transferred to the hyper-sterile ward in Hopkins that she called home during her stem cell transplant. Her physicians at Johns Hopkins are meeting to determine what the next steps are. According to my mother, they are hoping to treat her for the pneumonia this week and PERHAPS transfer her back to the rehab hospital later this week.

As you can imagine, this has been yet another dip on the roller-coaster that is Heather's life. As per usual, however, Heather and Dave continue to exhibit enormous amounts of emotional and psychological strength. In fact, the main reason Heather asked me to update this blog was because during all of this Heather and Dave have been thinking most about all of the people that have lent a helping hand this week. Of course my Mom and Dan and Louise Zeitlin have been helping Heather and Dave virtually around the clock with the house and the kids. Paul and Nikki Zeitlin also coordinated a brigade of volunteers to help recruit volunteer help to pack of Heather's house this week. We are all family, so of course our support is always there and unconditional.

Beyond this, what has REALLY touched Heather is the amount of help from her friends and the families of those friends who have stopped by the house this week in response to Paul and Nikki's request for help. Heather asked me to express her deepest gratitude to all of you who have helped over the last week to pack up boxes at Heather's house and who are marshaling resources to ease their transition to their new, wheel-chair friendly home. As a result of your help, Heather and Dave's house will go on the market this week. This absolutely would not have happened without you (she said there were too many to name!). So, on behalf of our entire family, thank you and God bless you.

I am on my way down to Maryland to help out for the month of October and will continue to provide updates when Heather can not.


Sunday, September 21, 2008

Another week

The good news. Time is actually going by rather quickly in rehab. I was able to get into the pool and do some exercises this week. They put weights on my legs so I can actually stand. I am unable to stand on land - this is an issue with Lee. He just keeps asking if I will stand again and it breaks my heart to tell him no. I remind him I am still here so we are lucky.

My big goal before I leave is to go from the ground and then back into my wheelchair unassisted. It requires a ton of upper body strength. They simulated a fall on Friday but I fear the day it actually happens. They assure me it will happen so I just need to work through the fear.

More good news - we found a one level house in our neighborhood and in the kids school district. We hope to have out house on the market ASAP and move into the new place as soon as possible. This is going to require a ton of work on our part and anyone out there that is local and wants to pitch in we are ready to accept your offer! Dave will need whatever help we can get to pack up stuff.

Some minor bumps/bad news - my counts are dropping, I was sick Saturday, and the chemo side effects are setting in. I am back on the anti nausea meds and getting some drugs for mouth sores. Overall I just want to maintain my strength so I can learn as much as possible in rehab and go home. I am wondering however if my counts go much farther south how feasible rehab will be for me. Simply put being in the hospital setting with crappy counts is a bad mix. I have a conference with my doc and therapist tomorrow so hopefully we can sort this all out.

I do think the Avastin must be working if it is effecting me physically so it is not totally bad news that my counts are in the crapper. I just keep praying that the progression has stopped and I only have to worry about being a paraplegic. I see the people in this place that are quads and I am amazed at what they accomplish.....I just can't imagine how hard it is to overcome.

Monday, September 15, 2008

Freedom pass

My trip up to Baltimore was very long. Mom and I were gone from about 7 a.m. to 7 p.m. The avastin was uneventful and I don't even need pre meds for nausea. That is good news!

Friday night Dave brought the kids over for pizza and a movie. We are trying to make our life as normal as possible and setting up a routine to see one another so the kids don't freak out.

Saturday Dave came in the morning with the kids and we were able to use the playground here. It is all accessible for the kid patients so Alex had a ball. The family stuck around for my occupational therapy and they are very open in including them which is wonderful. I did an endurance test in my chair and had to wheel over the the other hospital, maneuver the gift shop, and then back. It was a solid hour of wheeling my chair around. If I would have know I would have let Dave push me more when the kids were here in the morning. I wrapped up the day with weight training and then early bed.

Sunday the doctors granted me a day pass home. We took the kids to a museum and then back to the house for the remainder of the day. Since our house is a split I could only access the first floor, kitchen, living room and outside driveway. It was wonderful just to be home and see the kids, eat real food, and hang out. I got back to the hospital late and tired but well worth seeing my kids and dave.

Continue to pray the Avastin works and that my symptoms stay at bay. Thanks to everyone for the kind notes, cards, flowers, and prayers.

Wednesday, September 10, 2008

Living at rehab.....

I am trying to establish a routine and it seems to be getting better. I wake early to begin the day with an hour of undress/bathroom/wash/dress routine. I successfully put on my shoes yesterday and today. Sounds like a little deal but it is huge for me.

Then I am off to physical therapy, group therapy with other paraplegics, lunch, recreational therapy, occupational therapy, and finally end the day in the gym lifting weights. I have a pass to eat my lunch in the cafeteria and the food is so much better. I managed the salad bar on my own but ran out of steam for soup. You don't realize how high those soup holder things are until you are in a chair. Let alone it is just a challenge working around a cafeteria with a tray, other people, and the wheelchair. Finally end the day back in my room with dinner and another long bedtime routine.

Tomorrow is my second round of Avastin at Hopkins and mom and I leave bright and early. Wish me luck and pray for no complications.

Monday, September 8, 2008


Today I learned that the rehab folks would like to release me in October! I was totally bummed out since I thought I was a short stay. I understand that the longer I am here the stronger I will get but an entire month away from Dave and the little z's breaks my heart. On top of this crappy news my symptoms are worse and my so called good leg I cannot wiggle like I used too. It makes physical therapy so hard because my condition is a moving target. My therapist is wonderful and said we will just keep moving forward, hope for the best, and prepare for the worst. Dave is helping me focus on what I can control (my upper body) for now and try not to get down.

They gave me a different chair to try out for a couple days. I continue to progress to a better and better chair. This one helps me sit up straight and not slouch. Since my symptoms effect my lower abs, balance and sitting up-right is a workout in itself. Even taking the measurements for my final go home chair was a workout.

My doc has the game plan to get the second dose of Avastin on Thursday. I get a day trip to Baltimore so that will be nice. My therapist also said they will ask the docs to allow me to go home every Sunday to test run real life and see the family. It will probably take every ounce of will power to not just stay home for good.

I also get a roomie tonight - sucks. I will have to step up the sleeping drugs and ipod. Maybe I am a bitch but I just don't feel like chit chat with strangers these days.

I will get through this - this shall pass.

Saturday, September 6, 2008

Prayers are working!!

I heard from my spectacular neurologist and it appears that my insurance has initially approved the Avastin treatments! I read the email, called Dave, and just cried. I know our family was willing to find the money no matter what but this is such a relief to me I cannot thank god enough.

My doc is warning me that insurance has been known to change their minds but for right now we are approved and moving forward. I will get my second Avastin treatment next week. They will put me back in the ambulance, drive me up to Baltimore, drug me up, and return me back to rehab.

Of course I continue to pray that the Avastin actually works for me but this is such a good sign, gives me renewed hope, confirmation of my faith, and finally possibly a turn around for me and this diagnosis.

So THANK YOU to everyone that has reached out to me, our family, prayed, sent good thoughts, vibes or whatever it is you do! It is working I can just feel it.

My temporary home - rehab

I am settled into my rehabilitation center in DC. I was transferred late in the day Thursday and arrived a bit rattled and scared but mom saved the day and talked me down. I have a semi private room next the the window with no roomie just yet but I am sure that will change.

The doctors, occupational therapist, and physical therapist evaluated me yesterday and got a baseline down for the record. This should help us see if there is any improvement or deterioration.

I will essentially be doing 3 hours a day of therapy in addition to my hourly morning and nighttime routines. It seriously takes me an hour to bath, use the restroom, and get dressed. It is part time therapy on Saturday and Sundays we get off. The facility of course is very accessible and kid friendly. They allow all the little z's in my room and just about everywhere on campus. The three of them came to visit last night and stirred up the place.

They have excellent resources for getting a better wheelchair, hand controls in my car, assist with metro access rides, and will do whatever they can to help me get disability. Insurance has approved a 14 day stay so we will see what I can get done it that time. I just want my independence back.

Thanks for the thoughts and prayers. I am still praying that my hands don't get paralyzed. I am off my high does steroids so it always freaks me out what can happen. Just need to continue
to think positive.

Wednesday, September 3, 2008

Still no move

I am still in Baltimore waiting to transfer to DC for rehab hospital. I broke down, let it out, made some waves and moved on. I am fairly certain I will go tomorrow but worse case scenario I should be moved Friday. Being a type A personality with no tolerance for bull shit is not the recipe for success in a hospital. At least the darn doctor that said I would leave yesterday came in today and apologized for getting my hopes up. I think all medical professionals need to do a mandatory stay in the hospital so they get it.

Taking charge of my situation (with the help of Dave and my good doctor) got me another visit from physical therapy here. The therapist gave me exercises to do and a game plan on what to work on while I am killing time. I finally feel like I am doing something. Since I have numbness and lost of sensation in my lower abdomen I need to strengthen my muscles to regain my balance. It is scary since I feel like I am going to fall flat on my face but I just need to keep trying.

I also got off my duff, in my chair, grabbed my wallet, and got myself a good cup of coffee downstairs. I only spilled half of it trying to make it outside to enjoy the fresh air but it was so worth the spill. I also took a trip downstairs again tonight before dinner to get more fresh air. Why don't they make windows that open in hospitals?

I am doing better and my mental health has had a bounce with the help of Dave, my wonderful doctor, and faith.

Keep the prayers coming. Maybe the Avastin will kick in overnight and I can get up and walk out of here!!!! Worth the prayers even if it is a long shot.

Monday, September 1, 2008

Get me out of here!!!!

So I have come to the end of my rope with my stay at Hopkins Bayview Medical Campus. The nurses are great, the doctors top notch, but I just need some fresh air and change of scenery. My roomie is getting on my last neve and I couldn't have survived this long without my headphones and music. How much time can a human sit in a room (share it no less) without fresh air and go insane. I need to remind myself of the transplant days and get some perspective.

So by this Wednesday, pray to god, I will be transported to the National Rehabilitation Hospital in Washington DC. It is only about 20 minutes from home and my stay should last about a week. From what I hear they do about 3 hrs of physical therapy daily to teach me how to deal with my new mobility. I think they have resources to come to the house and check out what could help, get me a better wheelchair, and have some shrinks on hand in case I am getting nuts. As long as I can have some freedom with my chair and get fresh air hopefully I will stay sane.

There is just so much hurricane and Sarah Palin coverage once can watch on TV. I need freedom!!!!