Day by Day w/ Robbi and David

Stay with us, as Robbi writes the basic updates (as only Robbi can!). David will provide some details when ever he feels up to it...

DAY 5 - 123106

Today David has a cold. He’s fine and I guess it’s to be expected. First because we’ve kept every germ away from him from Westborough to Waterville, and 2nd his immune system is a little compromised at present. I’m pounding him with zinc and vitamin C. I even made him get outside and get some ME air into his lungs.

I found the basement floor of the hotel and did laundry and found a gym and pool as well. No, I’m not getting the suit on and diving in but it’s nice to know it’s there just in case I feel like a workout. I just may surprise you all and come back all buff and pumped. We’re expecting a big storm tonight into tomorrow. Big storm to these folks is getting out the shovel, to David and I it’s getting out the LL Bean gear! Yes of course I packed it.

Last day of 2006. How do I begin to put this year into words? I can’t. All I can do is feel. What I feel is love and compassion thanks to you. David put it best when he said, “Everyone with a disease should be treated like this.” Nothing has taught me more than what I’ve learned in this past year.

I wish you a year filled with love and laughter. Because with love and laughter you can get through anything.

Happy New Year my dear sweet family and friends. Thank you for being by my side. XOX

[ Patient Update: Debbie called today, just to check in on us. Robbi is pumping me with Vit. C and Zinc – there is surely going to be a world wide shortage after this week.
I feel feverish but my temp is normal. The hospital bed allowed me to rest without aching all over.

This week’s plan:
Several visits to 3-North (the inpatient ward) just to get the lines flushed out and check/clean the dressing.
The next major milestone will be when my stem cells rapidly multiply & mobilize. I am told that I will feel a lot of discomfort because the cells will create pressure in my bone marrow. This should happen sometime between Friday, Jan. 5th – Monday, Jan. 8th.

~ Robbi

DAY 4 – 123006

Not as bad as we expected. Slow and steady was our mantra for the day. The day began real tough but as it progressed David came around more and more. I called our head nurse and told her David was very uncomfortable, and didn’t sleep again. It was decided to order up a hospital bed., from a supply company. In 2 hours it was here and set up. They were amazing. I’m grateful every single day here. I ran a few more errands, (There is always a flipping Wal Mart and I can’t stay out of there!) in the SNOW STORM driving 4 miles an hour but I got everything done and came back in time to direct a crew in rearranging the furniture. We made it look like home and we’re very comfortable.

I just knocked David out with an Ambien because he hasn’t had a good night sleep in 2 nights. I don’t expect to hear much from him for the rest of the evening. We’re hanging out watching movies and I’m crocheting for the rest of the weekend because I’m making everyone in ME a shawl or a scarf!

I’m thinking of you all. Miss you all very much.

~ Robbi

DAY 3 – 122906

Today I shopped for presents for everyone in the hospital because we are in love with the whole team. I got to David at around 3. There is some very cool shopping around here. David was entertaining everyone in the hospital getting a sponge bath with the nurses and serving them the candy I brought in. We were discharged around 5:30 and came back to the hotel to get ready to go to our doctor’s home for a party. Very surreal…I didn’t dare get into a Scrabble game with a house full of doctors and nurses. They were using words I never want to know the meaning of! However my team won a game of music trivia. I had huge advantages because the music was from the 70’s, and I had David - “Mr. Information Man” and Dr. Traynor’s husband – “Mr. Information Man 2” on my team. Met their 2 horses with heads the size of my body and their 4 dogs. David and I had a ball.

Now back to reality because we’re told David will feel shitty the rest of the weekend into the week. We just hope it’s not too bad. But if it is I’ve assured him that I can go right next door to the drive up Baskin and Robbins and pick us up a couple of banana splits.

~ Robbi

Day 2 – Chemo Day – 122706

Today was chemo day. David will be at the hospital until tomorrow late afternoon or Sat morning. He’s doing great. Everyone at the hospital is in love with him and they are so sweet to us. I have a big basket of candy in the room for everyone to eat when they come in. I want to buy them all presents! J

Our doctor, Ann Traynor invited us to her house tomorrow night for a party she’s having anticipating we would be on time and released tomorrow afternoon. But we got a late start with the chemo and they fell 5 hours behind so instead of being released tomorrow afternoon it looks like it will be Sat morning. We would have loved to have been there. We would have known everyone there! It’s our whole staff. They were all excited that we were coming and we were too.

The nurses are telling us to expect that David will not feel well this weekend from today’s procedure so we won’t be snow boarding as planned.

[Geek Update from David: The reason for the delay is very interesting.
Since this is the first time MaineGeneral (MGH) is using this protocol, they need to complete processes that they’ve never done before. For instance, they had to draft and sign a contract with a local lab so that specific blood tests could be completed.
I feel so special…]

[Patient Update: Once it all began, it went like this…
Great staff! Even as they work with a process they’ve never done, they are professional, inquisitive, and honest. We are all in this together.
Dr. Traynor (here-after referred to as Ann)
Big dose of chemo, precluded by a drug that helps to minimize (or avoid!) the damage that the chemo can do to my bladder. After the chemo it’s 20 hrs of saline solution to wash me out. I’m in bed for the whole thing, although I can get up to take care of bodily functions. All day and nite I have a ritual that includes walking my IV tree around. I’m up and about and using my laptop. I wasn’t online during this stay, but I will be when I check in for the transplant.
So much of the day I was meeting people who are involved. Some are medical staff, and some are administrative. We all know we are apart of something very important.I didn’t sleep at all this nite. No pain – just could not fall asleep.]

That’s it for now. I’m taking advantage of not having to get up early tomorrow morning. I told the nurses I leave David in there hands.

DAY 1 – 122606Big thumbs up. David got his line put in his chest this morning and he’s been resting. They told me it would be about a ½ hour so when they brought him out an 1½ hours later I was a little shaky. But they said everything went excellent and David came out acting like they gave him a pedicure. I dropped him off at the Inn and ran around doing errands getting things together for the room that he needed and some scripts.

[Geek Update: When we walked into the hospital, we were immediately met by Debbie (The Boss). She introduced us to the person who heads up the engineering team. He has been working to ensure that the hospital and Inn are set up to provide the proper physical environments.]

The whole town knows us! I went to CVS and the woman says, “Hi Mrs. Rubenstein”. It’s scary! Tomorrow David will get admitted to the hospital and begin chemo to stimulate his stem cells. Then he’ll be released late afternoon on Friday. This weekend we’ll be hanging out and hopefully David won’t be too bad from the treatment.I feel a little like I’m walking around in someone else’s life. I can’t believe we’re involved with something of this magnitude. We have a 28 page contract to review tonight. Basically it says that if anything bad happens they never saw us and we have to agree that’s true.I’m keeping busy and crocheting away! Already on my 3rd shawl… There is a yarn store down the road so I’ll be buying more yarn. I’ve already taken a whole laundry basket full. We asked the front desk to bring us in some extra waste baskets and another lamp, they brought them in plastic bags and they had sterilized them. They don’t realize it’s not necessary to do that right now but it’s nice to have them so attentive to the details, so I’m not saying anything. They come all suited up like they would be toxic to us. It’s kind of cool actually. I’m just afraid that the first germ that hits me I’ll get the flu!Hope all is well with you all. I feel like I’ve been gone for a year!

- Robbi