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".

A Quick Hello

It's been awhile since I have written and have so much to tell. It has been an absolutely crazy and busy week since I arrived in Seattle. It seems impossible that it has only been that long. Is it possible to have cabin fever already? I am getting adjusted, learning the new ropes, and taking care of business. And there is sooooooo much business to take care of!

For tonight, given that I am able to sleep, I just wanted to say "hi" to everyone, let you know that it really is one day at a time, but that I am fine.

Wishing you peace and much love.

Greetings from Seattle!

We're here!

Craig and I drove over yesterday. There were lots of last minute changes in our plans. First, late Thursday I got the call that my apartment at the Pete Gross House was available. This was great news so that I didn't have to stay at the hotel and then move into the apartment. Second, although the apartment seems soooo expensive, it is certainly less than the hotel.

On Friday, we found out that the transplant team really wanted Craig here for the first several days. Apparently there are some significant meetings and consultations that will take place. So we decided to ditch the airline ticket (A plug for Alaska airlines: They refunded my non-refundable, non-changeable ticket due to the situation) and packed up everything that was to come West and hit the road.

The kids are at home with our friend Alex. But it was a big change that not only was Mommy leaving, but Daddy as well. Craig will fly home either Wednesday or Thursday. And then Craig and the boys will fly over on Friday the 20th the kids for the weekend and Craig to stay for a long stretch.

Because my heart is still broken, I will not linger on this, but leaving my home, my family's home, where I am the wife and the mother, was the hardest thing I have ever done. I asked the kids to look in my eyes, to look far into my soul, and to let me do the same to them. I need that, for me to know that they know me and that I know them, and that that connection and love will always be there. Enough. The saving grace is that I will see them in two weeks, for some fun time, before the treatment stretch begins.

I can say that I slept better last night than I have in a very long time. I attribute this to the anxiety of the long goodbye being over and to the very special linens that Steph and Shelley left on my doorstep at 12:30 am Friday night.

Today we will finish getting moved in, settled in, get some groceries, etc. I will take some pics and post them too. It's a nice apartment, nice views, and home for a long time. There are details I I write about later, but a big FYI: NO LIVE PLANTS OR FLOWERS. NO SILK PLANTS OR FLOWERS. NO FRUIT BASKETS. Please do not send as your gift will not be allowed in the building.

More later, but the journey has begun!

P.S. Craig's phone is broken, as in REALLY broken. please call on my cell for the next few days. Thanks!

Housing Update

Forgot to share the good news that my apartment opened up at the Pete Gross House in Seattle! I will be able to move-in on Saturday upon arrival in Seattle. Hooray! While the monthly rent is still outrageous by Spokane standards, not having to stay in the hotel for the first few weeks will save me quite a bit. And it will be nice to not have to move around. And Type A me will feel MUCH better being able to get moved in, settled, and oriented before things really get busy.

As I wrote earlier, the Pete Gross House is an apartment building on the Seattle Cancer Care Alliance Campus. It is a very short walk to Fred Hutch, the Transplant Clinic. The Pete Gross house is comprised of apartments, at below regional market rents, for bone marrow transpant patients and caregivers. It is also the hub of support systems and other services. They have shuttle service to Fred Hutch when the short walk is no longer possible. (From The Hutch, there is shuttle service to the UW Hospital). They also have shuttle service to a Safeway and some other stores and restaurants. From all that I have learned, it is definitely the preferred place to stay.

Apartment #412 will be my new home until mid-June! I will have a mailbox there, so should you feel like writing me the old-fashioned way, just use the mailing address to the right, under Contact Info.

Plans for My Blog

Most likely I won't be writing again until after I get to Seattle. Time is short and unless I am up in the middle of the night again, I want to spend as much time as possible with my family. So this is a short goodbye until I pick up again in Seattle.

FYI: We have also been having endless problems with Comcast, both with our internet and home phone services. We are working with them to get it fixed but as yet, both services are hit and miss. So if your call hasn't been returned, we most likely didn't get the message. Or one of the three phone answerers didn't pass it along... With internet access spotty, I plan on trying to get caught up next week.

Many of you have asked if my blog will be updated while I am in Seattle. Yes! I will keep writing for as long as I can. Then Craig will be posting updates occasionally. I am also going to ask Misty and Guy (who the boys will be staying with when Craig is in Seattle with me) if they will occasionally post about how the boys are and what's going on in their lives.

Thank you to all of you who have complimented me on my blog. I enjoy writing and it's also cathartic. And it seems the most efficient way to keep people posted. I don't always send out emails when I have written new entries, so feel free to check the site anytime.

Thanks for the suggestions about turning this into a book. It feels good to know that you think it's that interesting. But I really can't imagine anyone would want to buy it. I just don't think anyone who doesn't know me would want to read about all of this stuff. But, again, thanks for the compliment!

House Work

Much to our surprise, we were informed about two weeks ago that numerous preparations would have to be made in our home prior to my return from Seattle. ANY source or potential source of mildew, mold, and bacteria must be removed. Because my system will be so immuno-compromised, even the smallest exposure could cause severe or even life-threatening complications.

Well, our house was built in the '70's. We've always had that someday list, thoughts and ideas of things we would like to update, change, or replace. Now, alot of it is a must. Pretty harsh realities, with short notice to boot. And expenses we had not been prepared for.

Our main focus has been water-related issues. So, our hall bath and shower has been ripped out and replaced, and some piping replaced. (For those of you who have had to use it, you know what I mean....). And since the original tub was some funky size, we also had to move and replace the bathroom door as it is now a different size. Toilet piping work has been completed. Our master shower has been repaired. The kitchen sink had to be replaced and a garbage disposal installed. There had been a leak behind our dishwasher, so the floor board and some drywall is being replaced. And a new dishwasher with a special sanitizing system and food remnant removal system is being installed. Because the old sink had old piping, it was a hotspot for trapped food remnants and thus bacteria and mold. And a big part of the post-transplant changes involves food handling and disposal.

We were also told that if our carpet and pad are older than five years, professional cleaning may not be enough to eliminate the potential exposure to dust, dirt, and the effects of old spills and miscellaneous fluids contributed by two babies, two dogs, and a cat. So now we are also faced with needing to replace the pad and carpet! Hardwood floors/laminate is of course the easiest to keep clean. But with two big dogs, it seems they would scratch so easily.

We are getting some bids and options to consider. I will likely have to have some samples sent to me in Seattle to choose from. Now I am not trying to be sexist, as of course Craig is capable of making these kinds of decisions. But he is color blind....

We also have put off painting the exterior of our home for years due to the cost. Unfortunately, we already knew that if we didn't do it this year, we would end up having to replace some of the siding material due to our neglect. So when we found out that ANY and ALL work to the house has to be done before I come home, we've had our painter over, picked colors, and got on his schedule. (Again, the color blind issues.) We are hoping and praying that our tax refund will cover this expense. But for the rest, it's all out of pocket, right now. Ugh!

I guess the flip side is that some nice updates are getting done. It's just not the best timing for it. And it's kind of funny looking because we are only doing the "musts" so aesthetics will have to wait.

Another project that must be completed for me to return home is duct cleaning. We are a little nervous on this one too. A couple of years ago we had gotten a bid to replace the furnace from hell, which fails to operate on a regular basis. (Thank goodness for our annual service plan.) At the time of the estimate, we were told that the duct work needed to be replaced. So we are praying that this project will not evolve into replacing the ducts. And the furnace.

Will it ever end?!

At first I thought maybe all this preparation was just a way to be super cautious. While it is in fact that, it is also apparently necessary. Failing to do this stuff can land me in the hospital. And as crazy as it sounds, it could be life-threatening. We weren't happy to not know about it until so recently (we did know that everything had to be thoroughly cleaned and sterilized) but not that major home improvement was involved.

When we met with another local family who went through a bone marrow transplant last year, they had to do the same things. Crazy. I know how much of an economic strain it is for us, so I am left to wonder how people less fortunate are able to get all this work done. It all seems to full circle back to the fact that the economics of transplant are out of reach for many people.

Anyways, the next time you are at my house, please enjoy my eclectic half updated bathrooms and kitchen!

It will be weird to come home to so many changes. Kind of fun to look forward to.

Post-transplant instructions dictate that I will be unable to do housework. I am really sad about this..... It's for the same reasons that all the work must be completed prior to my return. The stirring up of dust, bacteria, mildew, etc. is a no-no. I even have to leave the house for a couple of hours if someone cleans or vacuums. Ah, there is a silver lining!

Fun Stuff

Squeezed in to what seems like endless preparations has been a number of really good times. For those of you who have shared some of this time with me lately, thank you. There have been a lot of trips down memory lane. A lot of laughs. Quite a few tears. But real, genuine connections and joy.

Two of the things I would like to share with you all. First, one night our friends Keri and Gordy, and their daughter Jessi, came over and spent the night. All of us, including our boys, watched Craig's and my wedding video. Keri and Gordy were both in the wedding.

I honestly don't know the last time I have laughed so hard! For those of you who weren't at our wedding (June 26, 1999), our wedding singer was a real original. The video was on the wedding party at the altar. Our faces were hilarious, as the singer went on and on and on. And watching that video was like seeing so many of you again. We were blessed that day, for sure.

It is also a fun parent thing to hear your kids ask why they are not in the video. They want to know where they were and why the videographer didn't include them. Then the four of us adults just laughed and laughed, talking (privately)about how at the time we were really trying for them not to be here.....

Another special thing we have done is surprise the kids with an overnight stay at Triple Play in Hayden, ID. For those of you not familiar, it is a super cool indoor water park, adjoined by a hotel. Just the four of us went and had some great family time. The boys are ready to go back and John Paul has already declared his intent to celebrate his next birthday there!

Ugh, my heart hurts just writing about all these "just in case" and "memory lane" trips. I am not ready to be done. But I appreciate all the memories and stories you have been sharing with me. Laughter is, of course, a great medicine.

"The Shift"

About a week ago, I experienced a real shift in my life. There had been, of course, the "before" breast cancer and the "after" breast cancer. Then there was the "before" leukemia (that one whole month....) and the "after" the leukemia diagnosis. Somewhere the "before" transplant had begun, but not really hit me. Suddenly, it's a "now" thing. It's transplant time.

Nothing in particular happened. Yet instead of being in a little while, it was in a number of days. A countdown, I guess, to leaving for Seattle. Somehow the leaving home really defines it.

My endless projects, preparations, and to do lists became more of a "what I absolutely have to get done before I leave list". Some of those things I can take with me to Seattle and work on during the free time during the first two weeks of tests and meetings. The best analogy I can give is that it's like getting ready for a vacation. There's all this stuff to do to get ready to go. But when time runs out, you pack, check your purse for your tickets and i.d., and go. Does that make sense?

It is an interesting position to be in, half living and half dying. The long list of thinds I wanted to get done before I left? Hey, I can get it done when I get back. Then there's that fear that I won't come back and I will regret that I didn't get it done before I left.

The last few weeks have felt like the long goodbye. It has been wonderful to get to talk to and visit with so many people. But there seems to always be that elephant in the room. Is it a "see you when you get back thing", or is it a goodbye? I suppose it's a little of both. The silver lining is having had those opportunities with people, to say some things I may not otherwise have said. And to get to experience that deep connection and love is a blessing.

Yet sometimes I just want to cry or scream. I don't know if I will be back. Have you ever had the experience when you look around you, at all the people in a crowded place, and wonder what's going on in their lives? Sometimes I do that, and wonder if any of those people are saying goodbyes and wondering if they will be alive in a month. Okay, I know I'm weird. However, my behavioral health people assure me it's all normal. But it's still weird to me.

Without a doubt, the hardest part is interacting with my kids. I want the warm fuzzies, cuddling, holding hands, kisses, and hugs. Yeah, right! They are boys, through and through!

Time is certainly running out before I leave. There are many phone calls to return and make and I hope to use some of my initial Seattle time to connect with many of you. And if you don't know what to say to me, as I have been told by some of you, the answer is: Just be my friend. We don't have to talk cancer, leukemia, transplant, death, the meaning of life, and so on. Let's just say hi. Share with me what's going on in your life. Although my current occupation is sick person, I am still Sally.

Well, with all this emotional upheaval I've just written, it's time to end this post, with thanks and love. And I do believe in miracles.

Tuesday, The Last Doctor Day

Today, or I guess now yesterday, was my last regular Tuesday doctor day. I didn't really "get it" until after I walked out the door. For so long now I have been going to the oncologist weekly. But today, even the oncologist said a goodbye of sorts. This part of my life is really now over. The next stop is the Transplant Clinic.

It was weird leaving without another appointment scheduled. Weird just knowing that there is nothing left to be done but the transplant. I didn't anticipate the fear I would experience. I imagine it was just another step in the process of knowing there are no more outs.

Seattle or bust, baby!