Thursday, February 19, 2009

Thursday, February 19, 2009

I am exhausted! They really were not kidding that you are busy when you are here. I spend alot of the day at the Clinic and alot of the day washing, cleaning, and sterilizing things. All just to get ready to start conditioning and for transplant. There are prescriptions to fill and paperwork to read. Frankly, by the time I have done as much as I can, I crawl into bed.

I always know when I have gone too long inbetween blog posts and answering emails. The theoretical phone lines start burning! So I am going to really try to get caught up and stay caught up. Right.... At least I can try!

So much has happened since I have been here, and much of which I want to write about. I think the easiest way to get up to speed is to write entries "diary style", ie. by date. I jotted down notes along the way and took pictures when I could get compliant subjects. I'll start with today, and then go back to when I first got here. (The weird part is that you will end up reading the events out of order as well.)

Today began with my pesky alarm clock interrupting some much needed sleep. Shower and groom, including trying to figure out what do do with the hair that should have been cut and colored but seemed like a waste when it's going to be gone soon. Dress in layers.

Off to the Clinic! Every single day when you enter the Clinic EVERYONE must go through flu and cold screening. You fill out a form and they give you a sticker to wear. This is REALLY serious business. Everyone checks for your sticker throughout the day. They are not kidding when they say to display in a prominent place. If I ever learn the color stickers in advance, perhaps I can coordinate my outfits to match. The Sticker Lady did not want to be photographed but here's a picture of the station.

I had Labs at 8:45 am. It is really an exceptionally well-coordinated system, particularly impressive with the large numbers of people who go through. Here are a couple of pictures of the Lab Waiting Area. It was through getting in potential trouble taking these pictures that I made a new friend, Stacey. She is one of the staff in the lab. We've exchanged blog addresses and she, I think, is now a fan. (I asked permission from the Clinic to take pictures when I got here. It is okay as long as anyone identifiable grants me permission.)

After Labs, it's up to the 6th Floor, home of the Transplant Clinics. This is where almost all my appointments are. Your Team (Hooray! I'm Lime!) lives here. This includes my attending, my primary provider, my team nurse, my scheduler, my nutritionist, my social worker, and my pharmacist. When you check in at the reception desk, each time you ask for your "mailbox" to be checked (It's actually team color-coded hanging files. See picture for details.) Anyways, this is how you get the ever-chaging revised "itinerary" for the day and week. Each Friday you also get a schedule for the next week too. But I've had alot of changes so I check, check, check. If there are any other printed materials for you, they put them in there as well. I digress....

The Transplant Clinic has large waiting room, complete with isolation sections. there is also a video game area. While I imagine it was designed for pediatric patients, I'll put odds on Craig playing. The view is INCREDIBLE. It looks out over Lake Union. Here are some pics.

Then back to my Scheduler's desk. She literally coordinates everything. Again, very impressive system at work and my Scheduler, Carole, has been awesome. Here's a picture of her and Troy, who sits next to her but schedules for a different Team. I often loiter about, looking for some conversation for my sorry self. They have both been great about tolerating me.

My 9:30 am Support System appointment was cancelled at the last minute. So I make my way to Oral Medicine, also on the 6th Floor, to check in regarding my teeth issues. More on this debacle later... Patti and Michelle have been incredible and have really helped me. Kudos to them.

Stopped by Pastoral Care and then coincidentally met my Team Pastor Steven in the hallway. I haven't learned about many of these resources because my Social Work Intake has had to be rescheduled several times. Meant to be, it was, that I ran into Steven. Susan, do you see something here? So we went to the sanctuary (1st Floor, across from the money people) and talked. It was wonderful. And then we prayed together, and it nurtured me. This guy is definitely dialed in and particularly so in regards to the things heavy in my heart.

Back up to 6th for my Pharmacy Intake. You bring ALL of your current medications with you. This required using Craig's big backpack. Here's a picture of all the meds I have now, with ALOT on the way. Anyways my Pharmacist reviews them all, confirms that they are all correctly entered in my chart, and looks for potential interactions with all the meds I am about to start taking. I got a monster five slot per day pill box for a prize!

Then he talked to me about all the chemo drugs I am about to start. How they work, side effects, monitoring levels, and such. Pretty damn scary, but I would rather know up front. We also did some strategic planning on how and when I will get my prescriptions filled as before and after my case rate (clinical speak for conditioning through engraftment) I will have to have all prescriptions filled not at the Clinic but at a Group Health facility. So this took a little planning.

Finally, he gets out this big three-ring binder filled with pill info. There is an actual pill in a pocket, along with descriptions of dosing, what it's for, etc. Pretty crazy stuff. But there are a good number of drugs that I will be taking either to prevent things and/or manage things.

Finally, all info is exchanged and I am ready to go on my way with the instructions to come back in a day or two to pick up my medecine chart. Again, more REALLY serious business. It is around the clock dosing, so I will be getting up alot to take meds. It's nice, though, because the instructions then become incredibly clear and I just will do as told. Most patients apparently keep several alarm clocks in their apartments to go off each day at the certain time. Never thought I would need to buy alarm clocks!

I had some questions for my Pharmacist of the "sexual nature", so he scurried out to find my Primary Provider, Sarah. (Boy, did he blush!) Sarah comes in to give me the scoop on sex. It is actually a very dangerous thing during this process. Not only for me but the chemo I could expose Craig to. I'll skip the details, but even this is REALLY serious.

Then, I tried for the lst time, to change the circumstances regarding the boys' visit this weekend. Unfortunately, Craig and Brennan have both been sick and John Paul has been fighting it. The bottom-line, non-changed, final, and REALLY serious answer is that my contact will be very limited with them. They absolutely can't come in my apartment building as everyone here is immuno-compromised. They can stay at a hotel but I can't stay with them. I can't touch, hug, kiss, hold hands.....Do you hear my broken heart? I am not counting days to certain medical milestones but until I can see and be with my kids. I somehow thought that if I asked enough that I would get a different answer. Nope.

What I looked forward to the most was cuddling. And cupping my hand around the back of their heads. To giving them a bath. To holding hands. To a slumber party. To wet kisses from Brennan and trying to move in fast enough to land a kiss anywhere on John Paul's face.

As I write, Craig and I are trying to work out the details. Craig had to go in for a Nasal Swab in Spokane today so the results can be faxed to the Clinic. They want to know what virus he has recently had/been exposed to, as that affects what I may be exposed to. Damn the cold and flu season. But if I get sick, my entire transplant schedule would have to be changed. And if their germs were left anywhere and I got sick after chemo starts, the common cold can, quite literally, kill you.

When I left the Clinic with a broken heart, I was also on the mission to eat read meat for the last time for quite awhile. While you can eat it again a little further down the transplant process, it must be well done. As in pretty much charred. Why bother? I knew the entire "food thing" was coming, but hadn't known it was today.

So I took my sad self to the restaurant I look at everyday from my apartment, which is also located at the botoom of the SCCA/Fred Hutch Campus. I stuffed my sorrows with a beautiful meal. A definite recommend for Daniel's Broiler! Ceasar salad (off limits from now on: uncooked egg and unknown lettuce germs), filet mignon, medium,(undercooked meat). Impeccable service. The restaurant also treated me to creme brulee for dessert when they learned it was my last steak. I told them my next steak would also be there, when I come back for my one year anniversary follow up. Care to join me?

Back to my apartment, which is still a disaster from all the cleaning, bleaching, sterilizing, washing, etc. NEVER-ENDING job. Today I worked on the bathrooms. Everything and everywhere needs to be cleaned and bleached. So writing to you was a wonderful break. And I think I actually feel a bit better. Thanks for listening.


Nancy B said...

Um...I think whoever is organizing this Clinic ought to be running the nation. Perhaps the world. What an impressive set up. As vulnerable as you must feel right now, it must be nevertheless comforting to know that these people seem to be doing everything in their power to protect you. God bless you and keep you in this temporary home!

Nancy B said...

I have one quick question: Can you communicate with the boys via webcam or Oovoo?

Barbara Ann said...

Thank you for the informative blog! We're thinking about you constantly and now we can picture where you are and what you're doing. We're with you in spirit and with love.

Terri and Rich said...

Wow, Sally I just never knew what it would be like for you or thought I could ever guess. I feel so bad for you not being able to hug and kiss your children. I can not imagine but I know you must do this in order to be able to hug and kiss your grandchildren :-). You are a strong woman and you are always in my prayers. P.S. hopefully nothing too bad with your teeth? May have to send Dr. Anderson over there :-)?