over 1000

hello,
sorry its been a few days. Her counts this am 1,048. as most know, sally is home and i have gone from a turles pace to just crazy. I was playng bacheleor(sp?) for almost 3 weeks. so spent the weekend cleaning, laundry, and taking care of sally. she still takes a hanfull of meds 4x/day and at least 2 i.v. bags. learning how to get the routine down. Nausea still an issue but slowly subsiding. boys came into town today for four days so that made her smile. they are acutally all napping now. I will post some pics tomm with the latest info and craziness.

craig

going to apartment

well,
today her counts have gone up to 480. eating, taking meds and keeping it down. She is doing well and the team agreed to send her to the apartment. yeah ha. she will still need an i.v. a day in the apartment that i get to do but hey, something to do. She plans on sending out an email to everyone in a few days. thanks again for all your thoughts and prayers.
craig

Hello,
Well its Thurdsday and only a few things to talk about. Her counts are now at 180. Slow but progressing. They have switched all her meds to pill form and she is eating a good amount of her daily caloric intake. She is slowly feeling better and nausea is decreasing. She's still walking and starting to get alittle moody which of course are all good signs.

150 now and walking

Hello,
Well today is Wed and the counts are at 150. the specialists say should be a few more days and might go to apt. They told her she needs to eat and start walking. so included are some pics of her walking. Also caught her looking for a way out---at least thats the way it looks. Nausea still here but she is eating some.

140 and rising

well had an update from bloodwork earlier this am and her neutrophil count is now at 140. they expect her to be around 500 in 2-3 days. she is also going to try to eat dinner so should be interesting

Day 16

Hello everyone,
not sure where i left off last time but today her neutrophil count is 110. so still on track. I think the thought of getting out in less than a week has had its benefits. Shes asking what "needs" to be achieved so she can go home. So the usual type A personality is coming back. She has to take in her daily caloric intake, all meds, and counts to 500 for about 3 days. The nausea is the big factor for her but little by litle getting better. As u may have seen in her last pic the hair is gone. except i noticed she must be sleeping on her sides more because there is one big stripe down the back. I included the picture for embarrasment. I'll pay the piper later I'm sure.
craig

No News is Good News

Hello,
well is's Saturday the 21st at 2:00 p.m. with nothing new to report. Sitting in same chair wondering what makes time so slow. Sally is doing good. She is still having alot of nausea which repquires meds which makes her tired and sleepy which makes me bored. Counts are still the same. Meds still the same except they had to give her some blood this morning so I took some pictures. It happens when they destory your bone marrow that makes the blood products.
Boys are doing great and actually having a blast with the Sauberan's. I'm jealous.
Otherwise have a great weekend!

counts are here

Hello everybody,
Well today was a big suprise in a terrific way. The "Team" of doctors and of course P.A.s who do the rounds in the morning notified Sally that she actually has started to show counts. For those of you wanting to know what counts are----they are white blood cells (WBC).
the chemo destroys all marrow which of course makes WBCs. The donor marrow settles in and starts to make cells and one kind are WBC. Now although it is a terrific sign, they wont consider her engrafted until she reaches a count of 500. she is at 30. The team expects it to reach the mark of 500 in a few days.
Sally commented on that her mouth and throat feel alot better and is the first time that the body is starting to fight back.
She still is on everything under the sun I.V. and still has a week in the hospital if everything continues to improve.
Included are a few pictures i took. One picture is the chair that i've spent many house sitting in. Another is the weather channel that she was watching. Spend enough time in a room feeling like garbage and even the wetaher channel becomes exciting. Another is of the case of diet coke hidden behind the chair. And oh ya, Gonzaga plays today so theres my plug for them.

St. Patricks Day

Hello,
Well just figured out yesterday was st patrick's day. so happy day. nothing new to report. same o same o. she's still feeling miserable but should start feeling better by this weekend and next week the counts should go up. Thanks for all the thoughts and prayers. I'll post some new pics tomm.

Maury?

Hello everyone,
Today is day nine since it's day nine after transplant. Its how they keep track during her 3 week stay. She has had alot of mouth, throat and stomach pain. It is to be expected due to the chemo.
As far as new events. She has found Maury Povich on T.V. to help pass the time. If you have spare time, it is a funny show.
Jan and Galen left yesterday and got home safely. I think they missed the 70+ weather. Seattle in March is a little different than Arizona.
Brennan and John Paul went to Leavenworth, WA with the Sauberans. Its a small town with Bavarian heritage and still looks like its homeland. Of couse Sally and I haven't beent here yet.
Its difficult to keep busy in a room for 3 weeks. Thank God for internet. Otherwise nothing else new which is good news.

Tower of Pisa

Well its Thursday and a few new things. Sally's nausea is under control and starting to walk around the wing of the hospital. She still has hair as you can see in the picture but only for a few more days. We spoke with the P.A. and she will have more nausea and stomach pain until the new cells start to take over. The "engraftment" is still approx 10 days away. The chemo kills all cells so anywhere there are living cells that reproduce quickly get affected. i.e. stomach, throat, and mouth tissue, hair follicles, etc. Heart muscle, lung tissue etc don't reproduce.
Overall she is doing o.k. Still has about 2 weeks in the hospital. The staff and nurses are great and have been doing this for a long time.
The Pisa pic is her I.V pole. it contains nutrients, fat emulsion, 2 antibiotics, antivirals, and an anti rejection medication. the machines have 6 pumps and many tubes that lead into her Hickman line. Amazing how it all works out for the good.
I'll be keeping you guys informed and maybe with pics of her walking around.

Nothing new

Hello,
Well, nothing new to report. She is still having nausea and giving some meds to control that which makes her droggy. She is starting to get mouth and belly pain which is to be expected. It's a reaction to the chemo. Otherwise sleeping when we can and wishing for sunshine here in Seattle.

New Birthday

Hello Everyone, Well last night, Sally got a new Birthday. After expectating the cells to get there around 8:30, they finally appeared around midnight. The Nurses brought in three I.V. bags and attached them to the pump. Thats it. Pretty amazing that rebuilding one's bone marrow which supports all your cells in your body is all done by connecting a hose. It took about 4-5 hours to infuse the three bags. Sally and I slept through most of it. Included are a few pics of the process and a video of the i.v. line with the blood reaching her port. It was somewhat anticlimatic but amazing to see the process of ones's new life. The evening did have the feeling of a new born baby appeared in this world. Sally is resting as am I.
P.S. The Hannah Montana window magnet was from me.
Take care all.

cell day

Hello, O.K. I'm a day late on the update but actually nothing really to comment on yesterday. Thursday was a day of rest. In other words, no chemo and sleep. She's doing well besides the nausea. Her parents came in on Wed. We hosted a "new" birthday party today for her. she was pleased as you can tell by the pics. She will get the new cells/marrow tonight around 8:30. Then after that we sit and wait for the blood counts to rise. the chemo of course kills all white and red cells. so after the transplant, we wait to see if it takes. Kids are doing great so hats of to the Sauberan's for keeping that off the worry list. I sent out a text earlier just to let everybody in my phone with the correct number an update.

day 2

Well Hello,
today is the beginingof day 2 of being admitted to the hospital. yesterday was pretty boring. she did get her 1st dose of i.v. chemo which was uneventful, a good thing. alittle nausea but controlled with medication. today is the same. 1 more dose of chemo and more meds to control the nausea. The docotrs say it is boring till about day 4 or 5. then the sickness, hair loss and diarrhea starts.
she is sleeping alot from the side effects from the meds to control the side effects of the chemo. isn't medicine terrific. she has a great view of the bay and capitol hill. I'll try to post some pics later.

Holy Cow!!!!!!

Hello everyone,
Well this is my first time posting a blog so I need some slack from you internet stars. This will be a quick update. Fot the last 5 days, Sally has been taking meds around the clock. Aprox 150 tablets a day. The first chemo meds are 28 tablets every 6 hours. Not to mention the other meds to help with side effects. I of course have to set alarms around the clock to wake her up to take them. the side effects are contolled very well, except their side iffects. she is corked up like a drunk which is better than being sick all day.
Everyday she has bloodwork at the clinic every 2 hours from 8:00 a.m. till about 3:00 p.m. so with the combination of labs, meds and regular day activities, sleep has been of upmost imprtance for both of us.
She will be admitted on Tuesday for the big chemo and then the donor marrow on the
6th.
I found it interesting that the marrow is given I.V. The cells know where to go after that. Isn't nature amazing. They have no idea why or how, but they do.
when she is in the hospital, we should be able to keep up with the information and events almost daily. Thanks for all the prayers and thoughts and will talk to you all soon,.
craig

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.

A Little Neighborhood Flair

In addition to the many amenities offered here at The Pete Gross House, there is also a halfway house across the street for the mentally ill and recovering addict. The Department of Juvenile Rehabilitation is just around the corner. Super luxe highrise apartment buildings surround it all. And my new favorite, Home Deli, is just down the block. Not only is it a "corner store", but they serve homemade teriyaki and yakisoba, plus other meals. Our ecclectic bunch here at The Pete Gross House fits right in!

I am told that when you here sirens on our block, it is a fair toss-up on whether they are coming for us or the half-way house.....

Yes, Mom, the building is highly secured. Believe me, no one is getting in and no one wants in.

The Pete Gross House

My new home in Seattle is apartment #412 in The Pete Gross House. I'm in a corner apartment on the fouth floor (okay, a little obvious). It's a two bedroom (plus sleeper sofa), two bath, and is fairly spacious. It comes furnished, although I find myself in need in quite a few basics, such as cookware and lamps. I hope to get out soon to do a little shopping to finish settling in. Many of you know I am quite the nester, so I will not feel done until I am fully unpacked, rearranged a couple of times, stocked up, and can officially pronounce myself moved-in.

There are lots of windows, which I really like, as well as a small balcony. The fresh air is wonderful, despite the traffic noise that accompanies opening the balcony door or windows. The Pete Gross House is truly located in downtown Seattle, complete with nearby freeway and on/off ramps. I do have a nice view of the south end of Lake Union and can watch the seaplanes take off and land. I can also see Angie's office. Small world....

It is a six-story apartment building, plus a beautiful rooftop garden and sitting areas, a nice lobby area, and even has its own school, The Hutch School. It essentially a one room classroom for patients and siblings housed here while their families are here for treatment. It is fully accredited and the only one of its kind in the U.S.

I'm posting some pics of the apartment and views. After I finish moving in, i.e. some personal pictures and touches are done and all the To Do piles are either completed or hidden, I will take a few more pics and post as well.

To my gals Steph and Shelley, all I can say is: THANK YOU!

It is a unique setting in that all of us living here are either patients or caregivers, here in Seattle to receive either bone marrow transplants, stem cell transplants, or cord transplants. When you meet new people, it's "caregiver or patient?", "what's your diagnosis?, "where are you from?", and "how long have you been here?" and "how much longer do you have?". It seems a little like the questions one would ask in a prison, but it's the standard introduction. I have met a few people and made some casual friendships. I am, of course, still hard to peg as the patient, as I still have hair and some energy.

I am really glad that I was able to get in here. While it seems so expensive when paying the rent, it is below market and really is a comfortable place to be. We are all kind of in this together. There is something comforting about being able to cut to the chase and talk nitty-gritty with others. Without you and your generous donations, my stay here would not have been possible. While I have met some whose insurance covers lodging and meals, mine, as you know, does not. I am ever grateful for having this safe place, literally and figuratively, as my Seattle home.

A shuttle, otherwise known as the special people bus, runs about every twenty minutes all day to and from SCCA. Eddie, the driver, is pretty cool. He also makes a twice daily run to Safeway, which by chance is just across the street from Group Health, where I must get my copious prescriptions filled (as opposed to the convenience of using the pharmacy at the Clinic). Once you ride with Eddie to the SCCA, a shuttle runs about every twenty minutes back and forth to the UW Hospital. It is wonderful to have this available and a HUGE plus to staying here.

I also have a direct line for my apartment. It is (206) 262-9041. I am gone a great deal at the Clinic, but this is a way to at least leave messages and will be available for my caregivers to use or to be contacted at.

In closing, I am going to quote some information on The Pete Gross House:

"Who was Pete Gross? As the "voice of the Seahawks", Seattle's footballl team, for 17years, Pete Gross was a mainstay in Seattle culture. Drawn by his humorous, fair, fun, and concise announcing style, Sealltle-ites were faithful listeners throughout Pete's career. Pete is best remembered for the love and enthusiasm he held for the Seattle Seahawks, his family, and the community at large.

Pete battled cancer for years. During his treatment at various cancer specialty centers around the country, Pete and his family were struck by the lack of temporary, affordable housing for cancer patients who were often far away from their homes. They also dreamed of a place that provided a supportive environment of other people who were undergoing similar challenges with cancer.

Pete's family and friends joined with a wide array of local businesses, community leaders, and The Hutch to create the Pete Gross House as a lasting memorial to this special person. Thanks to the continuing efforts of The Pete Gross Council, safe, clean, convenient, and affordable housing for SCCA patients and their caregivers is still a reality".