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.
Wednesday, January 28, 2009
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.
Transplant Preparations
It's a busy time here with all that needs to be done to get ready to leave for Seattle on February 7 for the transplant. And of course my Type A self feels like it all has to be done today, right now. It's an incredible undertaking trying to get all the ends tied up with SCCA, lodging, transportation, supplies needed, health insurance, my battle with Social Security, caregivers, childcare, house and per sitting, and basically stepping out of my life for months. I've also found that presumable because I have such little control in my life that I need to exert extra control where I can. Does that make sense? My counselor says it's pretty typical. Ah, to be normal!
I'll keep working on posting about topics that I receive questions about. Let me know if there is anything I forget or you want to hear about.
I'll keep working on posting about topics that I receive questions about. Let me know if there is anything I forget or you want to hear about.
Tuesday, January 20, 2009
A Special "Thank You" to Rockwood Clinic
As many of you know, Rockwood Clinic, Craig's employer, has been very supportive of our family and circumstances over the past fourteen months, when I was first diagnosed with breast cancer. I would like to thank them here, to tell them how much it has meant. We are ever grateful that Craig works for a company that truly cares about its employees and their families. And while I am unable to discuss the particulars, Rockwood has pledged their support to us over the coming months, enabling Craig to be with me in Seattle during the times when I will really need him.
Thank you.
I would also like to share with you our sorrow for what the CEO of Rockwood, Dr. Kevin Sweeney, and his family are facing. Dr. Sweeney's teenage son is in the final stages of a terminal illness. Dr. Sweeney took a six month leave of absence at the first of the year. I share this with you because Dr. Sweeney has been integral of the support and flexibility given to Craig, even as he juggled his work responsibilities with his private heartbreak of his son's illness. He even has reached out to me directly, to reassure me, to tell me not to worry, that he "had my back". Even as he left for his leave, he made sure his interim replacement would know about our situation and continue to offer to help us in the manner he would have.
That is class. That is integrity. And that is compassion for others even when your own world is caving in.
I only wish that we had some way to support and help him as he has with us.
I would also like to thank everyone at Rockwood Quail Run, Craig's clinic, for all of their support and frankly, tolerance, as my health has yanked around my husband's life and thus theirs. The staff, both medical and non-medical, have had to pick up alot of his responsibilities and duties when he was unavailable to do so. Thank you to each of you.
Please pray for Dr. Sweeney and his family. Wish for peace and grace for them.
Thank you.
I would also like to share with you our sorrow for what the CEO of Rockwood, Dr. Kevin Sweeney, and his family are facing. Dr. Sweeney's teenage son is in the final stages of a terminal illness. Dr. Sweeney took a six month leave of absence at the first of the year. I share this with you because Dr. Sweeney has been integral of the support and flexibility given to Craig, even as he juggled his work responsibilities with his private heartbreak of his son's illness. He even has reached out to me directly, to reassure me, to tell me not to worry, that he "had my back". Even as he left for his leave, he made sure his interim replacement would know about our situation and continue to offer to help us in the manner he would have.
That is class. That is integrity. And that is compassion for others even when your own world is caving in.
I only wish that we had some way to support and help him as he has with us.
I would also like to thank everyone at Rockwood Quail Run, Craig's clinic, for all of their support and frankly, tolerance, as my health has yanked around my husband's life and thus theirs. The staff, both medical and non-medical, have had to pick up alot of his responsibilities and duties when he was unavailable to do so. Thank you to each of you.
Please pray for Dr. Sweeney and his family. Wish for peace and grace for them.
Behavioral Health Update
Yes, I am still working on my "behavioral health". I can definitely say I am much "healthier" than I was a few months ago. I have been seeing my counselor usually every other week. I also continue to see the psychiatric nurse, usually each week. Her name is Tammy and she rocks!
I would add her to my list of blessings. She was the critical member of my "behavioral health team" who really helped me pull my head out of my butt. And still does.
Just for thought: When I started going "upstairs", the general reference to the "Behavioral Health" offices on the second floor of the medical facility, I saw an actual shrink, as in M.D. He does an intake, prescribes meds, then has you back for a med check. Interestingly, he is not utilized for therapy. I liked him though, and still appreciate his gentle invitation to stay at the hospital for awhile.
His nurse does what I would consider the counseling, along with other "counselors". So this is how I met Tammy. She and my counselor, Michael, have really helped me, in ways I simply don't know how to explain. I am now a real believer that if a person is ready and wants to do the work, counseling/therapy is worth it. Literally and figuratively.
(I guess I should add my general disclaimer that I only know what I see. There may be alot more going on "Upstairs" than I know. But it intrigues me that while I must pay my co-pay to see my counselor, Michael, Tammy's time apparently does not warrant one.)
Tammy has generously agreed to continue to provide support over the phone while I am in Seattle, and has even offered to be on standby should the boys need any behavioral health help while I am gone. Pretty cool.
All in all, I would say my behavior is much better.
I would add her to my list of blessings. She was the critical member of my "behavioral health team" who really helped me pull my head out of my butt. And still does.
Just for thought: When I started going "upstairs", the general reference to the "Behavioral Health" offices on the second floor of the medical facility, I saw an actual shrink, as in M.D. He does an intake, prescribes meds, then has you back for a med check. Interestingly, he is not utilized for therapy. I liked him though, and still appreciate his gentle invitation to stay at the hospital for awhile.
His nurse does what I would consider the counseling, along with other "counselors". So this is how I met Tammy. She and my counselor, Michael, have really helped me, in ways I simply don't know how to explain. I am now a real believer that if a person is ready and wants to do the work, counseling/therapy is worth it. Literally and figuratively.
(I guess I should add my general disclaimer that I only know what I see. There may be alot more going on "Upstairs" than I know. But it intrigues me that while I must pay my co-pay to see my counselor, Michael, Tammy's time apparently does not warrant one.)
Tammy has generously agreed to continue to provide support over the phone while I am in Seattle, and has even offered to be on standby should the boys need any behavioral health help while I am gone. Pretty cool.
All in all, I would say my behavior is much better.
Tuesday, Doctor Day
As many of you may know, my "Doctor Day" changed a few weeks ago from Thursdays to Tuesdays. What this generally consists of is my paying my $30 co-pay to learn that I still have leukemia.
I also get my labs done each week. They also tell me I still have leukemia.
I am certainly not trying to knock my oncologist. There's just no magic left to make this all disappear. Today I asked her if she was sure I still had leukemia. If she was sure there was no way it would just go away. If she was sure there wouldn't be a new miracle drug in the next month. Nope. I'm still going to have a bone marrow transplant.
I was just checking.
My GOOD news is that for the first time, in a very long time, my platelet count is within normal limits. Now that is an accomplishment! This endeavor consisted of the gradual increase of my daily chemo doasge, starting at 500mg/day to now at 2,000mg/day.
Many of you have asked what exactly the chemo is for, if it's not to fight the leukemia. It was to control my run-away platelet counts, a part of the leukemia.
The other GOOD news is that my pain level has dropped as my platelet counts have dropped. Hooray! I like it!!!!
Unfortunately, it seems the higher the chemo dose, the more tired I am. Life seems to consist of energy, fatigue, energy, fatigue, and so on. Sometimes it drives me crazy because the more I sleep, the less I "live". But it's definitely better than the alternative, blood clots.
I also get my labs done each week. They also tell me I still have leukemia.
I am certainly not trying to knock my oncologist. There's just no magic left to make this all disappear. Today I asked her if she was sure I still had leukemia. If she was sure there was no way it would just go away. If she was sure there wouldn't be a new miracle drug in the next month. Nope. I'm still going to have a bone marrow transplant.
I was just checking.
My GOOD news is that for the first time, in a very long time, my platelet count is within normal limits. Now that is an accomplishment! This endeavor consisted of the gradual increase of my daily chemo doasge, starting at 500mg/day to now at 2,000mg/day.
Many of you have asked what exactly the chemo is for, if it's not to fight the leukemia. It was to control my run-away platelet counts, a part of the leukemia.
The other GOOD news is that my pain level has dropped as my platelet counts have dropped. Hooray! I like it!!!!
Unfortunately, it seems the higher the chemo dose, the more tired I am. Life seems to consist of energy, fatigue, energy, fatigue, and so on. Sometimes it drives me crazy because the more I sleep, the less I "live". But it's definitely better than the alternative, blood clots.
Saturday, January 17, 2009
Benefit Fund Donors and Supporters
It seems like I have written this before, but I am horribly behind on posting donor names and acknowleding donations. I am so sorry and it certainly doesn't mean that it is not appreciated. It is soley a reflection of dwindling energy and time. Thank you to each and every one of you who has supported me financially and emotionally. It has made THE difference in being able to go through this. I often feel like the luckiest person in the world. Yes, it stinks to go through all of this. But how many are blessed with such support?
I am going to start writing, as time, energy, and memory allows, to tell you about some of the really cool stories and tidbits I have acquired along the way. Please feel free to write me about any you have so that I can share them on my blog.
Here are a few for now:
One of my best friends and my high school classmate, Katy Powers, turns out to most likely be a distant cousin of mine on the Seward side.
A 92 year young woman in Los Angeles, Miss Charyl Patterson, has sent a card no less than once a week for months. My Aunt Marjorie is a special friend to her and buys the cards and delivers them to Miss Patterson in her nursing home. I have never met her.
I have been enrolled in Lourdes Prayer League, of Our lady of Lourdes, by Cathy and Bob Stroup. They are the aunt and uncle of the mother of one of John Paul's best buds at school. I have never met them.
A tree was planted in my honor in one of our National Forrests. This gift was from Amy Brown, a friend of my mother-in-law, Belinda Adams. I have never met her.
Santa made an extra and early delivery to the Robertsons. Kenette Wentner helped him with the gifts that wouldn't fit in his sleigh on Christmas Eve.
I have many more stories to tell and look forward to sharing them. But isn't it all pretty amazing?????
I am going to start writing, as time, energy, and memory allows, to tell you about some of the really cool stories and tidbits I have acquired along the way. Please feel free to write me about any you have so that I can share them on my blog.
Here are a few for now:
One of my best friends and my high school classmate, Katy Powers, turns out to most likely be a distant cousin of mine on the Seward side.
A 92 year young woman in Los Angeles, Miss Charyl Patterson, has sent a card no less than once a week for months. My Aunt Marjorie is a special friend to her and buys the cards and delivers them to Miss Patterson in her nursing home. I have never met her.
I have been enrolled in Lourdes Prayer League, of Our lady of Lourdes, by Cathy and Bob Stroup. They are the aunt and uncle of the mother of one of John Paul's best buds at school. I have never met them.
A tree was planted in my honor in one of our National Forrests. This gift was from Amy Brown, a friend of my mother-in-law, Belinda Adams. I have never met her.
Santa made an extra and early delivery to the Robertsons. Kenette Wentner helped him with the gifts that wouldn't fit in his sleigh on Christmas Eve.
I have many more stories to tell and look forward to sharing them. But isn't it all pretty amazing?????
Insurance Approval
Today I got another "The Call". At 5:30 pm, I was notified by the Transplant Coordinator at Group Health (Hi Teresa) that my transplant has been officially approved. This is a rather essential part of the process..... And very good news!
Zyprexa
Have you seen or heard about the Zyprexa lawsuit? Apparently the drug's manufacturer has been ordered to pay the largest liability settlement ever within the pharmaceutical industry.
Why do I write about it? It is one of the drugs that is used, off label, for chemo nausea. I took it throughout my chemo for breast cancer. Would have been nice to know that it can make one suicidal.... Just another example of a health care industry far more interested in profit and pushing their drugs than in the actual benefits and risks to its consumers.
We'll add this larger issue to the "To Do List When Recovered". We, as a nation, must deman higher accountability from these drugmakers.
Why do I write about it? It is one of the drugs that is used, off label, for chemo nausea. I took it throughout my chemo for breast cancer. Would have been nice to know that it can make one suicidal.... Just another example of a health care industry far more interested in profit and pushing their drugs than in the actual benefits and risks to its consumers.
We'll add this larger issue to the "To Do List When Recovered". We, as a nation, must deman higher accountability from these drugmakers.
Face Book
So, one night I was looking at Face Book, trying to figure out what it is and how to use it. Apparently, I also invited everyone in my email address book to join..... For those of you who did, thanks! It looks like a fun and easy way to visit with others and reconnect with old friends. For anyone I irritated with my invite, I apologize.
Now that I have admitted that I am not so skilled with this stuff-I've never looked on You Tube or My Space- I will close by saying that I look forward to also keeping in touch on Face Book.....
Now that I have admitted that I am not so skilled with this stuff-I've never looked on You Tube or My Space- I will close by saying that I look forward to also keeping in touch on Face Book.....
Transplant Housing
This week has been a flurry of activity, as energy has allowed. One huge part of planning for the transplant has been getting housing arranged for both me and my caregivers while over in Seattle. No small fete, mind you, when trying to cover a four to five month time frame, within a certain radius of both SCCA and the UW Hospital (a requirement). For those of you not familiar with Seattle, that area is smack in the high-rent zone of downtown Seattle.
My first choice, for a number of reasons, is the Pete Gross House. It is a special apartment building on the SCCA campus, designed for patients like me. It is the hub of support systems for patients and caregivers. It also is fully furnished, including linens (no, they didn't know the thread counts) and such. All I need to supply is my own computer (check), my own long distance (check), my own paper products (to do list), my own cleaning supplies (to do list) and my own groceries (to do list). They also have shuttles to the transplant center (and from there, to the hospital) as well as to a local shopping center including Safeway (purchased scrip gift cards this week) and some other stores.
So I am on the list but due to the nature of the beast, an actaul move-in date is impossible to determine. The manager there said that in her three years' experience, the longest that a patient has had to wait after arrival at SCCA is two weeks. So you make alternate short-term housing arrangements until the call comes that an apartment is ready.
I have chosen The Silver Cloid Inn-Lake Union for my first Seattle home. It is essentially on the SCCA campus and offers shuttle service (but is within walking distance) to the Transplant Clinic as well as to downtown. They beat the Marriot's rates (also on the SCCA campus), upgraded my room and don't charge for parking.
In summary, I expect to stay at The Silver Cloud from Febraury 7/8 for the first two to three weeks until my apartment at Pete Gross opens.
I've started adding relevant links to the right regarding "Seattle". I will also be adding contact information for where I will be staying as well as how to reach Craig and I by phone.
I want to thank all of you who have donated to my Benefit Fund for helping make it so much easier to make these housing arrangements. No doubt about it: it's high rent and not covered by health insurance. It's a huge financial hurdle to have overcome. Thank you for helping me make this aspect easier and giving me peace of mind that I will be staying where I should be and where is best for me and my caregivers. I am blessed to even have these choices.
I also want to thank Mia and Darin Davidson for their very generous offer of assistance with housing. Even though the location was outside the required radius, I am ever grateful for the offer.
My first choice, for a number of reasons, is the Pete Gross House. It is a special apartment building on the SCCA campus, designed for patients like me. It is the hub of support systems for patients and caregivers. It also is fully furnished, including linens (no, they didn't know the thread counts) and such. All I need to supply is my own computer (check), my own long distance (check), my own paper products (to do list), my own cleaning supplies (to do list) and my own groceries (to do list). They also have shuttles to the transplant center (and from there, to the hospital) as well as to a local shopping center including Safeway (purchased scrip gift cards this week) and some other stores.
So I am on the list but due to the nature of the beast, an actaul move-in date is impossible to determine. The manager there said that in her three years' experience, the longest that a patient has had to wait after arrival at SCCA is two weeks. So you make alternate short-term housing arrangements until the call comes that an apartment is ready.
I have chosen The Silver Cloid Inn-Lake Union for my first Seattle home. It is essentially on the SCCA campus and offers shuttle service (but is within walking distance) to the Transplant Clinic as well as to downtown. They beat the Marriot's rates (also on the SCCA campus), upgraded my room and don't charge for parking.
In summary, I expect to stay at The Silver Cloud from Febraury 7/8 for the first two to three weeks until my apartment at Pete Gross opens.
I've started adding relevant links to the right regarding "Seattle". I will also be adding contact information for where I will be staying as well as how to reach Craig and I by phone.
I want to thank all of you who have donated to my Benefit Fund for helping make it so much easier to make these housing arrangements. No doubt about it: it's high rent and not covered by health insurance. It's a huge financial hurdle to have overcome. Thank you for helping me make this aspect easier and giving me peace of mind that I will be staying where I should be and where is best for me and my caregivers. I am blessed to even have these choices.
I also want to thank Mia and Darin Davidson for their very generous offer of assistance with housing. Even though the location was outside the required radius, I am ever grateful for the offer.
A Special Hello to My Friends at My Health Insurance Company
I thought I would start today's middle of the night postings with a special "hello" to my followers within the Group Health organization. I've heard that several of you are reading my blog and wanted to officially welcome you to Sally Land.
I guess we will never really "get" each other, as I battle for the best health care and health care coverage while maximizing the benefits I pay for, while you balance the need to provide service for your clients with controlling costs. I guess that puts us in opposite corners in many ways. Many of you have been very helpful to me and I believe you have done the best you can for me within the parameters of your positions and loyalties to your company.
Anyways, I digress. But, welcome. And feel free to add comments to my postings.
I guess we will never really "get" each other, as I battle for the best health care and health care coverage while maximizing the benefits I pay for, while you balance the need to provide service for your clients with controlling costs. I guess that puts us in opposite corners in many ways. Many of you have been very helpful to me and I believe you have done the best you can for me within the parameters of your positions and loyalties to your company.
Anyways, I digress. But, welcome. And feel free to add comments to my postings.
Monday, January 12, 2009
It's Transplant Time!
Hurry up and wait. Hurry up and wait. Then, BOOM!
Last Thursday I found out that my donor search had been narrowed down to seven or so 10 of 10 point matches. A couple in the U.S. and the rest in Europe. That was pretty big news, knowing we were getting so close to “The One”.
Last Friday, I got “The Call”. My donor has been identified and it was time to schedule my transplant!
Holy smokes! After knowing it was coming, and waiting and wondering, it is now a reality. My donor is a 44 year old male living in the U.S. I won’t be able to know anything more about him until the one year anniversary of my transplant. But you have to figure he can’t be an ass if he’s in the National Marrow Donor Registry and ready to give part of himself to help save a stranger’s life. I can communicate anonymously for now, and I have already written my first letter. Mr. Wonderful, whoever you are, wherever you are, THANK YOU. You have offered me hope that I can and will beat this disease. (I also have a back-up donor in Europe.)
My Arrival Date, which is what it is actually called, is Tuesday, February 10, 2009, at 11:15 a.m. My start at Registration puts it all in motion. Then bloodwork, medical history review, and clinic orientation. The next day is a huge meeting with my attending. The third day is bone marrow biopsy day (Yuck).
Then, until February 23, my days will consist of a cornucopia of tests and meetings with several departments. From dental to gyn. Pharmacy to finance. Scans and function tests. Social work. The whole gamut to see how messed up I really am, all the way around. The nice part is 1. At least this time I will know what I am dealing with going in and 2. I get evenings and weekends off.
After all my tests are complete and all the data is reviewed, there is a big conference to make final decisions on treatment plans and consent to be given. I am guessing that since no one would ever want to have to do this, it’s a pretty hard signature to write.
On approximately February 25th, my central line will be surgically inserted. Then with a day off to rest and take a huge gulp, “Conditioning” begins. The plan is to remain outpatient February 27 through March 2 during the first phase. Then I will go inpatient to finish the final Conditioning stage through March 5.
The “Big Day” is March 6, 2009, (03-06-09), when my donor’s marrow will be infused into me. This is the day that in transplant world is my new birthday. It will hold milestones and miracles. And it is also Day 1.
The goal of Conditioning is to destroy my body’s ability to make its own blood-making cells. Because of my freaky genetic change, I need to get rid of, as well as prevent further existence of, mine. The hope is that because although it is an unrelated donor, we are matched 10 of 10, and that my body will accept his transplanted marrow and begin to recognize it as my own as well as allow it to continue to make new cells. This is my layperson’s explanation of “Engraftment”. Within Day 7 to Day 30, if it’s going to “take”, it will. A successful engraftment means that my body will slowly begin to make new blood cells on its own.
After a sturdy engraftment, I will go outpatient again until at least Day 100. If everything goes swimmingly, I may be able to come home mid-June.
Wow.
I share with you my awe that my donor is out there, ready to go through some pretty uncomfortable business, to help save a life. I share with you the relief to know that he exists, as well as his buddy in Europe. I share with you the incredible blessing to even have a donor, to even have the resources to get a transplant. I am really, really fortunate.
I also open my breaking heart to you. I am so afraid. I want every last touch, every last look, a longer goodbye…… I just want more. It feels as though I am much on the countdown to death, for it is pretty much where the Conditioning must take me in order to save me. And I know there is another side, whether it’s engraftment or the REAL other side.
I guess what I am trying to say is that it is bittersweet.
I had needed a few days to kind of take it all in before sharing. I’ll soon write more details about living arrangements in Seattle, transportation, childcare arrangements, caregiver arrangements, visitors, arranging to come back home, longterm issues and recuperation, and a million more details that Type A Me feels the need to cover when going on a four to five month adventure. And the unpleasant but significant possibility of the Big Trip with no return. I share this with you to be truthful and thorough on what lies ahead. They do give “Death Window” dates of when things if they are to go horribly wrong, are most likely to do so. That harsh reality is there. I’m thinking if I just keep my eyes closed and duck, I should probably be in pretty good shape.
Cheers to the future! And to Mr. Wonderful!
Last Thursday I found out that my donor search had been narrowed down to seven or so 10 of 10 point matches. A couple in the U.S. and the rest in Europe. That was pretty big news, knowing we were getting so close to “The One”.
Last Friday, I got “The Call”. My donor has been identified and it was time to schedule my transplant!
Holy smokes! After knowing it was coming, and waiting and wondering, it is now a reality. My donor is a 44 year old male living in the U.S. I won’t be able to know anything more about him until the one year anniversary of my transplant. But you have to figure he can’t be an ass if he’s in the National Marrow Donor Registry and ready to give part of himself to help save a stranger’s life. I can communicate anonymously for now, and I have already written my first letter. Mr. Wonderful, whoever you are, wherever you are, THANK YOU. You have offered me hope that I can and will beat this disease. (I also have a back-up donor in Europe.)
My Arrival Date, which is what it is actually called, is Tuesday, February 10, 2009, at 11:15 a.m. My start at Registration puts it all in motion. Then bloodwork, medical history review, and clinic orientation. The next day is a huge meeting with my attending. The third day is bone marrow biopsy day (Yuck).
Then, until February 23, my days will consist of a cornucopia of tests and meetings with several departments. From dental to gyn. Pharmacy to finance. Scans and function tests. Social work. The whole gamut to see how messed up I really am, all the way around. The nice part is 1. At least this time I will know what I am dealing with going in and 2. I get evenings and weekends off.
After all my tests are complete and all the data is reviewed, there is a big conference to make final decisions on treatment plans and consent to be given. I am guessing that since no one would ever want to have to do this, it’s a pretty hard signature to write.
On approximately February 25th, my central line will be surgically inserted. Then with a day off to rest and take a huge gulp, “Conditioning” begins. The plan is to remain outpatient February 27 through March 2 during the first phase. Then I will go inpatient to finish the final Conditioning stage through March 5.
The “Big Day” is March 6, 2009, (03-06-09), when my donor’s marrow will be infused into me. This is the day that in transplant world is my new birthday. It will hold milestones and miracles. And it is also Day 1.
The goal of Conditioning is to destroy my body’s ability to make its own blood-making cells. Because of my freaky genetic change, I need to get rid of, as well as prevent further existence of, mine. The hope is that because although it is an unrelated donor, we are matched 10 of 10, and that my body will accept his transplanted marrow and begin to recognize it as my own as well as allow it to continue to make new cells. This is my layperson’s explanation of “Engraftment”. Within Day 7 to Day 30, if it’s going to “take”, it will. A successful engraftment means that my body will slowly begin to make new blood cells on its own.
After a sturdy engraftment, I will go outpatient again until at least Day 100. If everything goes swimmingly, I may be able to come home mid-June.
Wow.
I share with you my awe that my donor is out there, ready to go through some pretty uncomfortable business, to help save a life. I share with you the relief to know that he exists, as well as his buddy in Europe. I share with you the incredible blessing to even have a donor, to even have the resources to get a transplant. I am really, really fortunate.
I also open my breaking heart to you. I am so afraid. I want every last touch, every last look, a longer goodbye…… I just want more. It feels as though I am much on the countdown to death, for it is pretty much where the Conditioning must take me in order to save me. And I know there is another side, whether it’s engraftment or the REAL other side.
I guess what I am trying to say is that it is bittersweet.
I had needed a few days to kind of take it all in before sharing. I’ll soon write more details about living arrangements in Seattle, transportation, childcare arrangements, caregiver arrangements, visitors, arranging to come back home, longterm issues and recuperation, and a million more details that Type A Me feels the need to cover when going on a four to five month adventure. And the unpleasant but significant possibility of the Big Trip with no return. I share this with you to be truthful and thorough on what lies ahead. They do give “Death Window” dates of when things if they are to go horribly wrong, are most likely to do so. That harsh reality is there. I’m thinking if I just keep my eyes closed and duck, I should probably be in pretty good shape.
Cheers to the future! And to Mr. Wonderful!
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