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.
Sunday, February 15, 2009
Sunday, February 8, 2009
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!
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!
Wednesday, February 4, 2009
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.
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!
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!
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.
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.
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!
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!
Wednesday, January 28, 2009
What The Kids Know
Many of you have asked what we have told the kids about my disease and the upcoming transplant. I share this with you hoping that you will reinforce the postive light we have tried to communicate our answers with.
As far as my having leukemia, we have explained that Mommy has some more "inside" germs, kind of like when Mommy had "inside" germs in her breasts. (Okay, admission. The boys call them "boobs".) These germs are in my blood. They can't get out and make anyone else sick, even if I get an owie. They can't catch them if I cough or sneeze.
They have been told about the words "cancer" and "leukemia" but we try to limit the use of these words as they are scary to them.
They know Mommy has been trying to raise money to go to the very special and very expensive doctor in Seattle. We've told them that we now have enough money to go and that the doctor will be calling very soon to tell me to come.
When they asked how the very expensive very special doctor is going to fix my blood, I told them that I am going to get new blood.
We have told them I will be gone for quite awhile and that Daddy will be gone alot too. So far they think this is pretty cool because they will get to stay at their friends' house.
They are not sure they want to come visit me. Unfortunately, these kids have already visited me in the hospital too many times. We've told them they would come when I am out of the hospital and working on getting well enough to come home. If a Seattle visit includes the zoo, they think they could do that.
We have not had any big talks about death. But since I was diagnosed and the topic of death has come up, I have tried to use those opportunities to talk about what our family's beliefs are. They simply are too young to "prepare" them for this possibility.
As far as my having leukemia, we have explained that Mommy has some more "inside" germs, kind of like when Mommy had "inside" germs in her breasts. (Okay, admission. The boys call them "boobs".) These germs are in my blood. They can't get out and make anyone else sick, even if I get an owie. They can't catch them if I cough or sneeze.
They have been told about the words "cancer" and "leukemia" but we try to limit the use of these words as they are scary to them.
They know Mommy has been trying to raise money to go to the very special and very expensive doctor in Seattle. We've told them that we now have enough money to go and that the doctor will be calling very soon to tell me to come.
When they asked how the very expensive very special doctor is going to fix my blood, I told them that I am going to get new blood.
We have told them I will be gone for quite awhile and that Daddy will be gone alot too. So far they think this is pretty cool because they will get to stay at their friends' house.
They are not sure they want to come visit me. Unfortunately, these kids have already visited me in the hospital too many times. We've told them they would come when I am out of the hospital and working on getting well enough to come home. If a Seattle visit includes the zoo, they think they could do that.
We have not had any big talks about death. But since I was diagnosed and the topic of death has come up, I have tried to use those opportunities to talk about what our family's beliefs are. They simply are too young to "prepare" them for this possibility.
Disability Update
Well it looks like I may have won my fight. Not the way I wanted to, but won anyways.
I have received a letter from Social Security saying that their legal advisors have decided to approve me back to the original date I applied for and stated my disability began, November 2007. According to this document, this last appeal has been ruled "Fully Favorable" to me. This is, of course, fantastic news. The November 2007 date was so key to me for several reasons. First, it is when I was diagnosed with breast cancer and have had cancer ever since. Second, I have been unable to work at all during this time. Third, it means I will receive back pay in benefits to April, as there is a five month waiting period. Fourth, and perhpas most important, is that it is two years from the eligibility onset date that one is eligible for Medicare. This means that I will begin to receive Medicare in November of 2009, which is not that much further away. Medicare may allow me to drop the exorbinant WSHIP policy I just signed up for (read below).
Victory is sweet. I fought, and fought, and fought, and fought. But until I receive a new Award Letter, see it in writing, and receive the backpay funds, it's not a done deal for me. I have heard these magic words before, only to have it changed. But the big packet they sent me gives me hope that this is really it. And what a relief it would be!
I must tell you, however, that I have apparently been approved due to my depression rather than the fact that I have been battling breast cancer and leukemia. Yes, you read correctly. Again, it's like banging one's head against the wall. Here is a person with a black-and-white disease, who will die without a successful transplant, and I am not medically qualified. They do write in their decision that they agree that my medical condition prevents me from working, but it does not meet their standard for being medically unable to work. What the heck is that about?!
So, they move to the top of my list of the work to do after I am home and recovered. This is simply insane, intolerable and unacceptable. I sincerely hope for each and every one of you that life's circumstances never bring you to one of their offices in need of help.
I'll be back, Social Security........
I have received a letter from Social Security saying that their legal advisors have decided to approve me back to the original date I applied for and stated my disability began, November 2007. According to this document, this last appeal has been ruled "Fully Favorable" to me. This is, of course, fantastic news. The November 2007 date was so key to me for several reasons. First, it is when I was diagnosed with breast cancer and have had cancer ever since. Second, I have been unable to work at all during this time. Third, it means I will receive back pay in benefits to April, as there is a five month waiting period. Fourth, and perhpas most important, is that it is two years from the eligibility onset date that one is eligible for Medicare. This means that I will begin to receive Medicare in November of 2009, which is not that much further away. Medicare may allow me to drop the exorbinant WSHIP policy I just signed up for (read below).
Victory is sweet. I fought, and fought, and fought, and fought. But until I receive a new Award Letter, see it in writing, and receive the backpay funds, it's not a done deal for me. I have heard these magic words before, only to have it changed. But the big packet they sent me gives me hope that this is really it. And what a relief it would be!
I must tell you, however, that I have apparently been approved due to my depression rather than the fact that I have been battling breast cancer and leukemia. Yes, you read correctly. Again, it's like banging one's head against the wall. Here is a person with a black-and-white disease, who will die without a successful transplant, and I am not medically qualified. They do write in their decision that they agree that my medical condition prevents me from working, but it does not meet their standard for being medically unable to work. What the heck is that about?!
So, they move to the top of my list of the work to do after I am home and recovered. This is simply insane, intolerable and unacceptable. I sincerely hope for each and every one of you that life's circumstances never bring you to one of their offices in need of help.
I'll be back, Social Security........
Housesitter
Within the whirlwind of planning Craig and I are in, we were also faced with the challenge of finding a housesitter for the time periods when both Craig and I are in Seattle. Not only is it ideal to have someone in the home during his absences, we also have two large dogs and a cat who need to be cared for. We also did not want to have all our mail forwarded. So we are extremeley grateful that Alex Brudnicki, our friend and neighbor, has agreed to move on in!
She will be getting our mail and forwarding it to us weekly and checking messages occasionally as well. Shortly I will put together a calendar post so that you will know, in summary, who will be where when. But it is a great relief to know that she will be here.
Sadly, I am under the belief that when I return our pets will have to be gone due to the risk to a number of illnesses that I would potentially be vulnerable to with a severely compromised imune system. This is also one of the first questions I will be asking when I arrive in Seattle.
She will be getting our mail and forwarding it to us weekly and checking messages occasionally as well. Shortly I will put together a calendar post so that you will know, in summary, who will be where when. But it is a great relief to know that she will be here.
Sadly, I am under the belief that when I return our pets will have to be gone due to the risk to a number of illnesses that I would potentially be vulnerable to with a severely compromised imune system. This is also one of the first questions I will be asking when I arrive in Seattle.
Visitors Policy
Many of you have asked me what the vistors policy will be while I am in Seattle. My first answer is that I am not totally sure. It is one my list of questions to ask when I arrive and I will post more then. But based on the information I have received it appears that it is essentially based on how I am doing and the chance of the visitors recent exposure to illness.
I do know that while I am in the hospital with literally no immune system, any visitors must go through a sterilization process (no, not the reproductive kind) before coming into my room. After engraftment and my body begins making its own blood cells again, I think the same rules apply but become less stringent as my body's defenses begin to grow.
I would genuinely love to see anyone who happens to be in Seattle while I am there. I guess I would just want to warn you that it may not be pretty. But if you are up to that, give my cell a call (the number is posted at right) and we'll see my current status. It's a long time to be away and in a bubble, so new faces and energy will most certainly be welcomed.
I do know that while I am in the hospital with literally no immune system, any visitors must go through a sterilization process (no, not the reproductive kind) before coming into my room. After engraftment and my body begins making its own blood cells again, I think the same rules apply but become less stringent as my body's defenses begin to grow.
I would genuinely love to see anyone who happens to be in Seattle while I am there. I guess I would just want to warn you that it may not be pretty. But if you are up to that, give my cell a call (the number is posted at right) and we'll see my current status. It's a long time to be away and in a bubble, so new faces and energy will most certainly be welcomed.
Fundraising Thermometer Removed
You may notice that I have removed the fundraising progress thermometer that has been a permanent fixture on my blog. I chose to do so for a number of reasons.
First, as I have begun using the funds for different expenses related to the transplant, I decided it would be seem negative to see the amount raised appear to decline when in fact it is simply a reflection of your generous donations in action. And let me tell you the panic I feel when I spend a dollar of it! I am particularly aware of how blessed I am to have to have the money as my resource.
Second, I really don't know anymore how much I am actually going to need, so a specific goal is impossible to determine. As you can read below, I have invested in a high risk insurance policy to help prevent a super hige bill coming home with me. While I know there will ultimately be many expenses that I will incur, I do not want to mislead anyone by stating a number I can no longer be sure of.
Humbly, I ask that if you still are ever able to donate, please do so. The "Donate" button will continue to work and the bank, Numerica, will continue to accept any donations sent. remember, it's "a Little From a Lot". Anything and everything helps.
I still am in awe of the incredible support I have received freom so many. Thank you for being a part of my success.
First, as I have begun using the funds for different expenses related to the transplant, I decided it would be seem negative to see the amount raised appear to decline when in fact it is simply a reflection of your generous donations in action. And let me tell you the panic I feel when I spend a dollar of it! I am particularly aware of how blessed I am to have to have the money as my resource.
Second, I really don't know anymore how much I am actually going to need, so a specific goal is impossible to determine. As you can read below, I have invested in a high risk insurance policy to help prevent a super hige bill coming home with me. While I know there will ultimately be many expenses that I will incur, I do not want to mislead anyone by stating a number I can no longer be sure of.
Humbly, I ask that if you still are ever able to donate, please do so. The "Donate" button will continue to work and the bank, Numerica, will continue to accept any donations sent. remember, it's "a Little From a Lot". Anything and everything helps.
I still am in awe of the incredible support I have received freom so many. Thank you for being a part of my success.
New Relatives in My Life
One cool thing about my blog is that I have found new relatives in my life.
As I wrote earlier, I found out that my good friend Katy Powers is a distant cousin of mine.
I have also received both correspondence and donations from distant relatives on my mothers side. Mrs. Meeker and Mr. Staten both reached out through the family tree with their support. That's pretty cool!
I have the unique opportunity to "see the love" now. We often all come together after someone has died. Thank you to all of you for letting me be the proverbial fly on the wall while I can appreciate it.
As I wrote earlier, I found out that my good friend Katy Powers is a distant cousin of mine.
I have also received both correspondence and donations from distant relatives on my mothers side. Mrs. Meeker and Mr. Staten both reached out through the family tree with their support. That's pretty cool!
I have the unique opportunity to "see the love" now. We often all come together after someone has died. Thank you to all of you for letting me be the proverbial fly on the wall while I can appreciate it.
Tuesday, January 27, 2009
WSHIP
My Financial Counselor at SCCA recommended that I apply for Medicaid and WSHIP, which would both be secondary insurance coverages. I, as we expected to be, was denied for Medicaid. I will tell you that going to that office was a rather unpleasant and depressing experience.
The WSHIP, or Washington State High-Risk Insurance Pool, is available to people who apply for health insurance and are denied due to their answers to the company's health questionnaire. So you get a big packet full of information about WSHIP's different plans and associated costs, but no information about what the policy would actually cover.
So I call them and they are interestingly located in Kansas. To make a long story short, for a big chunk of money per month, I elected to sign up. It will act as a secondary on all my medical and prescriptions. It, too, has a co-insurance, but provides me with two important things: 1. A secondary insurance to be billed and 2. The availability to an additional $250,000 lifetime transplant coverage. Essentially, if I should have an organ fail as a result of the bone marrow transplant, I would still have the financial possibility to cover it. But perhaps most important is that I know I have done everything in my power to lessen the possibility of coming home from Seattle owing huge amounts of money.
It fascinates me that the program exists yet is so expensive that I imagine it is not an option for most. It will be interesting to see how it all works out.
The WSHIP, or Washington State High-Risk Insurance Pool, is available to people who apply for health insurance and are denied due to their answers to the company's health questionnaire. So you get a big packet full of information about WSHIP's different plans and associated costs, but no information about what the policy would actually cover.
So I call them and they are interestingly located in Kansas. To make a long story short, for a big chunk of money per month, I elected to sign up. It will act as a secondary on all my medical and prescriptions. It, too, has a co-insurance, but provides me with two important things: 1. A secondary insurance to be billed and 2. The availability to an additional $250,000 lifetime transplant coverage. Essentially, if I should have an organ fail as a result of the bone marrow transplant, I would still have the financial possibility to cover it. But perhaps most important is that I know I have done everything in my power to lessen the possibility of coming home from Seattle owing huge amounts of money.
It fascinates me that the program exists yet is so expensive that I imagine it is not an option for most. It will be interesting to see how it all works out.
Yep, It Was The Wrong Transplant
So I call the transplant coordinator at the health insurance company and explain my confusion for the type of transplant that they had written me to tell me I was approved. She said that she really didn't get it, either. The letter to the patients come from another department and that all of her records state I will receive a stem cell transplant. She also explained that if the transplant center had any questions, I could just have them call her.
I then explained that at this point in the comedy of errors that this experience has been, I would like a new letter stating the correct transplant type I would receive. Despite her reassurances that all her paperwork refers to the correct one and I didn't really need a letter, I told her that I would need to insist on this "detail".
The whole thing just conjurs up the images of when operations are performed on the wrong part of the body. I am starting to uderstand a bit more of how that can happen.....
I then explained that at this point in the comedy of errors that this experience has been, I would like a new letter stating the correct transplant type I would receive. Despite her reassurances that all her paperwork refers to the correct one and I didn't really need a letter, I told her that I would need to insist on this "detail".
The whole thing just conjurs up the images of when operations are performed on the wrong part of the body. I am starting to uderstand a bit more of how that can happen.....
Saturday, January 24, 2009
The Wrong Transplant?
I opened an envelope from my health insurance company this morning which states that "coverage is authorized for: LYMPHOCYTE INFUSE TRANSP". While I am not 100% certain, I think I am being treated for the other kind of leukemia, Chronic Mylogeneous Leukemia, as in "M" or "CML" not "L" or "CLL". I am not sure that the treatments are different for the different diseases, but this is the first time I've heard that I need anything having to do with lymphocytes. It makes me wonder.
I think I'll give the tranplant coordinator a call first thing Monday morning.....
I think I'll give the tranplant coordinator a call first thing Monday morning.....
Caregiver Update
It's only a few hours since I wrote about needing some help with caregiving while in Seattle, and my April dates have likely already been covered! My long-time friend, Chris Minerd, has volunteered to cover the April dates. She's going to check with her boss on Monday but thinks it will be a go.
Since I haven't seen her in years, it will also be something to look forward to. Hooray, and thank you, Chris!
Since I haven't seen her in years, it will also be something to look forward to. Hooray, and thank you, Chris!
Childcare Arrangements
We are incredibly blessed to have so many of you offer to help take care of the boys during the time periods Craig is with me in Seattle. At this time, it is expected that Craig will be with me in Seattle approximately February 19 through April 7 and then again May 20 through June 13. These are the most critical time periods during the transplant process and when Fred Hutch would prefer my caregiver be my spouse.
Our hope is that we will be able to fill the remaining time periods with others in the role as my caregiver. With Casey's generous offer to help for about five weeks (read below) this leaves only two small windows open. If necessary, Craig will also be with me during these times as well.
My personal wish is that Craig will be able to go back and forth a bit so that the boys are not absent both parents for too long at any one period. I am already sad that I will be gone at all and hope to provide some sense of stability by his returns home.
While he is gone, our friends and neighbors, Guy and Misty Sauberan, have given us the incredible gift of opening their home to John Paul and Brennan. They have two children, Troy who is John Paul's age, and Amber, who is a few years older, and of whom Brennan is her biggest fan. Misty's mother, Kathy, also lives with them. Our families are good friends and our children are good friends. The boys will be able to share a room together and can even see our house from their back patio.
With that proximity, the kids can come home, whether it's to get new toys, different clothes, or just hang out at home for awhile. They can see our pets and be in their regular environment. They can easily spend time with our other good friends in the neighborhood. And we are trying to arrange "playdates" with other family friends here at our house.
The Sauberans own their own business (Hey! Need any automotive repairs or maintenance? Call LLoyd's Automotive at 927-9034!) and Misty's schedule is flexible and based on their kids' school schedule. Fortunately this means as little as adjustment as possible for both them and our boys. Steph Perko has graciously agreed to continue to provide John Paul's transportation to and from All Saints, as our start and dismissal times are different than Troy and Amber's school. And Brennan will continue his routine at the neighborhood daycare.
The most difficult aspect of dealing with being ill and leaving for the transplant is how it affects my children. And it is an indescribable peace knowing they will be where they will be happy, safe, and cared for like family. I will forever be in debt to Guy and Misty for opening their hearts and home to Brennan and John Paul. Walking out of their lives is, for lack of better words, easier, knowing they will be there.
I am entering contact numbers to the right under Contact Info so that should you want or need to, you can contact them during our absence. This is done, of course, with their permission. Should you wish to reach them via postal mail, please continue to send at our home address.
PLEASE continue to contact and interact with the boys as you normally would. Guy and Misty are more than happy to take your calls, arrange playdates, bring the boys to events or parties, etc. Their goal is to help us keep life as normal as possible. Please let them help us do that. And should you have the inclination, little outings here and there can keep you in their lives as well as giving the Sauberan's a little breathing room. Our friends Kevin and Belinda Jacobsen have invited the boys to spend Spring Break with them and their son, Gabriel, who is Brennan's age. This will be something fun for our boys to look forward to, possibly include a visit to Seattle, and give the Sauberan house a week of a little less chaos!
Craig and I have set the goal to have them visit in Seattle about once a month. We have target dates, which gives me something wonderful to work towards and to look forward to. However, this will depend on how I am doing and how their visit might affect them, in addition to any recent exposure to illness (Right.... Daycare and elementary school...). We also are a little limited by needing someone to travel with them. Hint, we are looking for volunteers to fly/drive, expenses paid, should you ever have a free weekend and want to travel with a terrific three and six year old......
Ultimately, when we are both gone, we confidently hand the reigns over to Misty and Guy to make all plans and arrangements on behalf of the boys. We have discussed our wishes at length with them and are confident they will make decisions as we would wish them to be. We have asked them to evaluate and communicate with us if the boys need the stability of sticking to their home base there or spend time with others or travel to Seattle. Please support them in these decisions. We know that no matter how much we plan or prepare, this will be a tough time for the kids. Our number one priority is getting them through all this with as little hurt and struggle as possible.
Again, Guy and Misty are happy to take your calls, for you to check in or call to visit with the boys, or make plans with our friends to see the kids. They will have a list of the names and numbers of friends and family that would be most likely to contact them. Just let them know who you are and go from there. If they have any concerns, they will contact us in Seattle or check with other close friends/family to make sure things are cool. It may be awkward, but better than disappearing! (Okay, this was not well written. Hopefully you get what I am trying to say.)
Ugh, this was hard to write. I don't want to leave them, period. But again, I find myself infinitely blessed knowing that they will be in good hands.
Our hope is that we will be able to fill the remaining time periods with others in the role as my caregiver. With Casey's generous offer to help for about five weeks (read below) this leaves only two small windows open. If necessary, Craig will also be with me during these times as well.
My personal wish is that Craig will be able to go back and forth a bit so that the boys are not absent both parents for too long at any one period. I am already sad that I will be gone at all and hope to provide some sense of stability by his returns home.
While he is gone, our friends and neighbors, Guy and Misty Sauberan, have given us the incredible gift of opening their home to John Paul and Brennan. They have two children, Troy who is John Paul's age, and Amber, who is a few years older, and of whom Brennan is her biggest fan. Misty's mother, Kathy, also lives with them. Our families are good friends and our children are good friends. The boys will be able to share a room together and can even see our house from their back patio.
With that proximity, the kids can come home, whether it's to get new toys, different clothes, or just hang out at home for awhile. They can see our pets and be in their regular environment. They can easily spend time with our other good friends in the neighborhood. And we are trying to arrange "playdates" with other family friends here at our house.
The Sauberans own their own business (Hey! Need any automotive repairs or maintenance? Call LLoyd's Automotive at 927-9034!) and Misty's schedule is flexible and based on their kids' school schedule. Fortunately this means as little as adjustment as possible for both them and our boys. Steph Perko has graciously agreed to continue to provide John Paul's transportation to and from All Saints, as our start and dismissal times are different than Troy and Amber's school. And Brennan will continue his routine at the neighborhood daycare.
The most difficult aspect of dealing with being ill and leaving for the transplant is how it affects my children. And it is an indescribable peace knowing they will be where they will be happy, safe, and cared for like family. I will forever be in debt to Guy and Misty for opening their hearts and home to Brennan and John Paul. Walking out of their lives is, for lack of better words, easier, knowing they will be there.
I am entering contact numbers to the right under Contact Info so that should you want or need to, you can contact them during our absence. This is done, of course, with their permission. Should you wish to reach them via postal mail, please continue to send at our home address.
PLEASE continue to contact and interact with the boys as you normally would. Guy and Misty are more than happy to take your calls, arrange playdates, bring the boys to events or parties, etc. Their goal is to help us keep life as normal as possible. Please let them help us do that. And should you have the inclination, little outings here and there can keep you in their lives as well as giving the Sauberan's a little breathing room. Our friends Kevin and Belinda Jacobsen have invited the boys to spend Spring Break with them and their son, Gabriel, who is Brennan's age. This will be something fun for our boys to look forward to, possibly include a visit to Seattle, and give the Sauberan house a week of a little less chaos!
Craig and I have set the goal to have them visit in Seattle about once a month. We have target dates, which gives me something wonderful to work towards and to look forward to. However, this will depend on how I am doing and how their visit might affect them, in addition to any recent exposure to illness (Right.... Daycare and elementary school...). We also are a little limited by needing someone to travel with them. Hint, we are looking for volunteers to fly/drive, expenses paid, should you ever have a free weekend and want to travel with a terrific three and six year old......
Ultimately, when we are both gone, we confidently hand the reigns over to Misty and Guy to make all plans and arrangements on behalf of the boys. We have discussed our wishes at length with them and are confident they will make decisions as we would wish them to be. We have asked them to evaluate and communicate with us if the boys need the stability of sticking to their home base there or spend time with others or travel to Seattle. Please support them in these decisions. We know that no matter how much we plan or prepare, this will be a tough time for the kids. Our number one priority is getting them through all this with as little hurt and struggle as possible.
Again, Guy and Misty are happy to take your calls, for you to check in or call to visit with the boys, or make plans with our friends to see the kids. They will have a list of the names and numbers of friends and family that would be most likely to contact them. Just let them know who you are and go from there. If they have any concerns, they will contact us in Seattle or check with other close friends/family to make sure things are cool. It may be awkward, but better than disappearing! (Okay, this was not well written. Hopefully you get what I am trying to say.)
Ugh, this was hard to write. I don't want to leave them, period. But again, I find myself infinitely blessed knowing that they will be in good hands.
Friday, January 23, 2009
Rock Band
Anyone out there get Rock Band for Christmas? Anyone out there hiding as far away from it as you can get?
While it is sweet to be serenaded with 80's hits, I am amazed at how loud it is. And it's not really the "music" itself, rather the noise from the "playing" of the instruments. I hear that there are some sort of apparatuses one can buy so you don't hear the banging of the drumsticks on the hard plastic on the drum sets..... If you know where to get these, please pass it along.
We have had alot of fun with it though. And watching Brennan sing with the mic is awesome. John Paul has really mastered the drums and Craig is "pretty good for an old guy" on the guitar, according to one of the neighborhood teens. We are going to video the kids in action and figure out how to post it either here or on Face Book.
And once again Craig is the Pied Piper of the neighborhood kids and John Paul's friends. They all want to come over and play with Craig.
I have a good life. Now if I could just get rid of that noise.....
While it is sweet to be serenaded with 80's hits, I am amazed at how loud it is. And it's not really the "music" itself, rather the noise from the "playing" of the instruments. I hear that there are some sort of apparatuses one can buy so you don't hear the banging of the drumsticks on the hard plastic on the drum sets..... If you know where to get these, please pass it along.
We have had alot of fun with it though. And watching Brennan sing with the mic is awesome. John Paul has really mastered the drums and Craig is "pretty good for an old guy" on the guitar, according to one of the neighborhood teens. We are going to video the kids in action and figure out how to post it either here or on Face Book.
And once again Craig is the Pied Piper of the neighborhood kids and John Paul's friends. They all want to come over and play with Craig.
I have a good life. Now if I could just get rid of that noise.....
Why It Takes So Long To Actually Get The Transplant
I've had a number of people ask why it takes so long to get the transplant after the donor has been identified. Of course I only know for my own situation, but here's how it played out:
The Transplant Teams at Fred Hutch rotate monthly on the 7th. They prefer that an incoming transplant patient arrive at the start of the team's rotation. So based on when my donor was identified, the next logical arrival date was the next rotation, which put me in February. Also, Arrival Dates are set for Tuesdays, so the first Tuesday after February 7 was February 10. And Arrive I will!
In addition to that system, there is also the necessity for time to clear the donor as medically suitable and arrange for the harvest of his bone marrow.
There is also the sequence of events that I have yet to complete. The results and outcomes of the tests and meetings the first two weeks will determine if I am ready to move on for transplant. For example, if another cancer is found, I will be sent back home for treatment and then rescheduled down the line for transplant. In addition, the information gathered then is presented to me, along with the team's recommendation for treatment. All the horrible things that could go wrong are discussed and statistical outcomes considered. It is then that I give consent for treatment.
This puts me two days into the third week that I am there. Then the central line is inserted and conditioning begins. So all in all, I have pretty much a month of "stuff" after I arrive in Seattle before the actual transplant can take place.
It seemed kind of far away to me too when we first established my arrival date and transplant date. But when I realized all the things that must happen before the arrival date, and then again after the arrival date but before transplant, it seemed really fast.
For example, a month from today, on Febraury 23, all my results will be in and will be being reviewed, and I will be giving consent. There's alot to be done by then.
The Transplant Teams at Fred Hutch rotate monthly on the 7th. They prefer that an incoming transplant patient arrive at the start of the team's rotation. So based on when my donor was identified, the next logical arrival date was the next rotation, which put me in February. Also, Arrival Dates are set for Tuesdays, so the first Tuesday after February 7 was February 10. And Arrive I will!
In addition to that system, there is also the necessity for time to clear the donor as medically suitable and arrange for the harvest of his bone marrow.
There is also the sequence of events that I have yet to complete. The results and outcomes of the tests and meetings the first two weeks will determine if I am ready to move on for transplant. For example, if another cancer is found, I will be sent back home for treatment and then rescheduled down the line for transplant. In addition, the information gathered then is presented to me, along with the team's recommendation for treatment. All the horrible things that could go wrong are discussed and statistical outcomes considered. It is then that I give consent for treatment.
This puts me two days into the third week that I am there. Then the central line is inserted and conditioning begins. So all in all, I have pretty much a month of "stuff" after I arrive in Seattle before the actual transplant can take place.
It seemed kind of far away to me too when we first established my arrival date and transplant date. But when I realized all the things that must happen before the arrival date, and then again after the arrival date but before transplant, it seemed really fast.
For example, a month from today, on Febraury 23, all my results will be in and will be being reviewed, and I will be giving consent. There's alot to be done by then.
Face Book
I finally got my Face Book page all up and running, as well as added a bunch of pictures. The whole Face Book thing is somewhat confusing to me. I don't get the pokes, and throwing thongs, and such. But what the heck? It's what the cool kids are doing!
Caregiver Update
I wrote in earlier entries regarding the fact that I must have a caregiver with me the entire time I am in seattle except for the first two weeks, consisting of tests and meetings. The total time I need coverage is approximately 110 days. That's a long time!
After getting the housing arranged, we started putting together my caregiver coverage calendar. There are specific times that they want Craig there. These time frames are more critical and the spouse is the preferred caregiver. Then there's a whole bunch of other time. I am incredibly fortuante that my sister-in-law, Casey, has been granted a leave of absence from her work in Mexico and will be able to provide a month's caregiving.
Now I am left with two windows without coverage. These dates are roughly April 7 - April 13 and May 13 - May 22. Some of you have expressed an interest in the past in possibly helping out. Here's your chance! Should your schedule and life accomodate joining me in Seattle for a bang-up good time, here's your chance!
It is not a critical issue, as Craig can also cover these dates. However, we are hoping to have him here with the kids when it is feasible. It is also important that he be able to have some breaks.
So if anyone is interested, give me a call. Our numbers are posted at right (We have been having internet problems for about a week).
One way or another, thanks to Casey's generosity, I am ready to hand over my caregiver calendar and can rest more easily knowing that it has been taken care of.
After getting the housing arranged, we started putting together my caregiver coverage calendar. There are specific times that they want Craig there. These time frames are more critical and the spouse is the preferred caregiver. Then there's a whole bunch of other time. I am incredibly fortuante that my sister-in-law, Casey, has been granted a leave of absence from her work in Mexico and will be able to provide a month's caregiving.
Now I am left with two windows without coverage. These dates are roughly April 7 - April 13 and May 13 - May 22. Some of you have expressed an interest in the past in possibly helping out. Here's your chance! Should your schedule and life accomodate joining me in Seattle for a bang-up good time, here's your chance!
It is not a critical issue, as Craig can also cover these dates. However, we are hoping to have him here with the kids when it is feasible. It is also important that he be able to have some breaks.
So if anyone is interested, give me a call. Our numbers are posted at right (We have been having internet problems for about a week).
One way or another, thanks to Casey's generosity, I am ready to hand over my caregiver calendar and can rest more easily knowing that it has been taken care of.
It's Official
Well, I am now the bearer of the blue placard.....the handicapped card.
Mixed feelings on this one. It's necessary because I will soon no longer be able to walk any significant distance. It's a benefit as I am already lagging on energy. It's a medical aide while a very long recovery plays out.
But I would really rather not need it, period.
Mixed feelings on this one. It's necessary because I will soon no longer be able to walk any significant distance. It's a benefit as I am already lagging on energy. It's a medical aide while a very long recovery plays out.
But I would really rather not need it, period.
Benefit Fund Donors
You may have noticed that I've added some new names to the Donor List at right. I am trying to get caught up and celebrate each new name I add. Isn't it amazing that so many have answered the call to help? Each person truly has made a difference in my life. With the transplant date now set, I am reminded that I would not have gotten this far without the help and support I have received.
Some of you have worked miracles as you have taken my cause to your personal and professional circles, generating many additional donations. I am in awe of the human spirit to help. It is genuinely inspiring.
I have also seen people donate more than once. The bank has forwarded countless noted that were included in donors' envelopes and I have been deeply touched by the heartfelt words that have been written. Many of you chose to donate because you have also been affected by cancer. I have read the stories of battles fought, won and lost. For those that have given in memory of someone you lost, I am honored.
For you Delta Phi Delta Gammas out there, you may remember Jackie Sadler, one of our advisors. Her daughter, Lisa Boyette, donated in memory of Jackie as well as on her own. Sadly, Jackie lost her fight with colon cancer in Decmber 2007.
My cousin, Robin Johnson, circulated my cause within her circle, reaching Phillip Barrow. His donation was accompanied by a kind note sharing how he lossed his mother to cancer and wanted to reach out because he knew how it had affected him and his family.
Kelcie Ottmar lost her fight against CML. Her big sister, Cindy Stevens, donated in her memory. Wow.
There are so many storied I could share. While I may not list them all here, please know that your thoughts, words, kindnesses, and generosity are valued and cherished. It is my honor to have you in my corner.
Some of you have worked miracles as you have taken my cause to your personal and professional circles, generating many additional donations. I am in awe of the human spirit to help. It is genuinely inspiring.
I have also seen people donate more than once. The bank has forwarded countless noted that were included in donors' envelopes and I have been deeply touched by the heartfelt words that have been written. Many of you chose to donate because you have also been affected by cancer. I have read the stories of battles fought, won and lost. For those that have given in memory of someone you lost, I am honored.
For you Delta Phi Delta Gammas out there, you may remember Jackie Sadler, one of our advisors. Her daughter, Lisa Boyette, donated in memory of Jackie as well as on her own. Sadly, Jackie lost her fight with colon cancer in Decmber 2007.
My cousin, Robin Johnson, circulated my cause within her circle, reaching Phillip Barrow. His donation was accompanied by a kind note sharing how he lossed his mother to cancer and wanted to reach out because he knew how it had affected him and his family.
Kelcie Ottmar lost her fight against CML. Her big sister, Cindy Stevens, donated in her memory. Wow.
There are so many storied I could share. While I may not list them all here, please know that your thoughts, words, kindnesses, and generosity are valued and cherished. It is my honor to have you in my corner.
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