As 2008 closes, I wish each of you a happy and healthy new year. No one knws why some things happen. But many of those "some things" are really good things. I hope only those for you.
My heart is heavy, remembering last New Year's Eve, as I quickly wished farewell to a horrible year of breast cancer and welcomed a new year full of its own challenges but ending pretty good for wear. I don't know how I got here, with genuine fright that this New Year's Eve would be the last. Somwhere in the past year everything changed and I am still trying to figure it all out.
Silly, really, when today is just an arbitrary day. But 2009 is my all-or-nothing year.
Wednesday, December 31, 2008
Friday, December 26, 2008
Snowstorms 2008
Holy smokes! We are under seige by snowstorms! For more than a week, it has been snowing. I have never seen it like this since I moved here in 1998. I must admit that the novelty is wearing off. We have been virtually homebound, along with the rest of Spokane. The snowplows focus on the arterials and emergency routes and have not yet made it into residential neighborhoods. Right now, you have to have chains in our neighborhood. Only four wheel drive and chains, plus a rig with enough clearance, can get in or out.
Every day we shovel and snowplow, sometimes multiple times in a day. Craig even had to shovel the roof due to concern of collapse. Postal service is few and far between and UPS and Fed Ex were unable to deliver most packages. We have been very popular as our neighbors have been asking to borrow Craig's truck. Even most SUV's are getting stuck so we have been lending out our rig.
The snow is so deep that the kids can't really play in it and the dogs don't want to go out. We actually had to shovel a path so they could go out to do their business. Who knew?
The airports have had to cancel most flights and those that get through are with delay. The Spokane Airport actually ran out of de-icer the other day.... Okay, that is a little embarrassing! The weather has hit or affected airports up and down the west coast. Craig's step-sister, Casey, has tried to fly in from Mexico three times since Saturday. She would get to L.A., then not be able to get any further north. So the airline would end up flying her back to Mexico. Then repeat. Then repeat. She finally made it to Spokane tonight via Dallas. Casey definitely gets the trooper award!
We are forecasted for more snow five of the next seven days. We are already thinking of Spring!
I put a Snowstorm Slideshow over to the right. Some of the pics are pretty cool. (I've moved John Paul's Birthday Party Slideshow and the December Fun Slideshow to the bottom at right.)
Disability Disaster
Remember when I was finally approved for Social Security Disability? Not so fast!
My case worker had notified me on December 3 that my appeal had been approved. And that was a sweet victory! My disability date had been dtermined to be November 2007, when I was diagnosed with breast cancer. It had been agreed that with the following four surgeries, six months of chemo, being diagnosed with leukemia, failing all treatment options, and facing a bone marrow transplant, along with my behavioral health "issues", that I had been unable to work and that it was reasonable to expect that I would not be working any time soon. This included the begininning of monthly benefits as well as back-pay for the time after the five month waiting period.
The November 2007 date also meant that in just a year basically, November 2009, I would receive Medicare, a huge deal because it would help tremendously with the very long road of recuperation from the tranplant and potential hurdles along the way.
However, my file had been randomly selected for quality assurance review, delaying payment for two weeks. Just procedure. And I was almost glad because I hoped that it would be brought to their attention the ridiculous battle I had had to fight to be approved.
Nothing came. And nothing came. Then a letter arrived the day before Chrsitams Eve, dated December 15 but delayed because we had not had postal delivery due to weather. I am tempted to post the actual letter on my site so that you can read, firsthand, what it said. Not only was it an incredibly poorly written letter full of double negatives and basic confusion, it essentially brought the cheery news that although they agree I am disabled, I am not disabled according to their medical definition. The harmless quality review resulted in a reversal of their decision, and their claim that I cannot be approved because of my medical condition, but I am being considered for approval based on my mental health condition. You know, the one I have because of my medical condition? And they kindly chose a random date of eligibility of May 2008, conveniently erasing the backpay and drastically changing the date that I will receive Medicare.
It concluded that a final decision of this new determination was yet to be made and to not contact the local SSA office until notified. Well, you know me, I was down there the next morning, quite a task with our weather and roads, to speak with my caseworker. (Who, by the way, is awesome and the saving grace of this experience). She had just received the internal notice that the new decision was a go. So gone is the backpay to put towards transplant caregiver expenses and some late bills. Gone is seven months of Medicare coverage. And gone was the reassuarnce that if you fight the good fight, do what you need to in navigating a painfully slow and frustrating bureacracy, that the truth prevails. And who knows even when these payments will finally arrive/begin.
Even my case worker, and her boss, are dismayed. I of course filed an appeal on the spot. This will consist of a hearing. The SSA office gives you a list of local attorneys, but at this point I will represent myself, if I am still here. My case worker says that this stage can last years. It is ludicrous that I should have to give half my benefits to pay for a contingency-fee case. I feel that I have the truth, the facts, and the documentation on my side. The system is always running behind on their information because it is so long after submitting one's records until they are reviewed that alot can change. As long as it does not null my right to potentially appeal the next ruling, I want to go before the judge and explain the whole story. Frankly, if knowing that a person will certainly die without a transplant, and that the person might die because of the tranplant, and that the recovery is not days or weeks but months and years, if all that doesn't make me medically eligible for Disability benefits, I don't know what does.
I realize I have written a very long post, but this information is vital. I want you to know about what the system is like. I want you to know the agony that they can put you through. I want you to know that if you ever need SSA Disability, this could happen to you. I want you to know that if a person like me, who has many resources and support available to them, has to fight this hard, there are many others out there fighting and losing too. This is what my tax dollars are doing for me. This is what your tax dollars are doing as well.
I am so angry I can't convey it properly. I have learned that a SSA decision means nothing. It can easily change. I have learned that people who have subjective conditions can easily prevail over a black and white, life and death, disease. I have learned that in the time of need, the SSA isn't there. I have learned that playing by the rules does not mean success. I have learned that even when all one's focus should be on taking care of themselves and enjoying each day as possibly one of the last, instead you spend a great deal of time fighting for things which you thought were already there.
Screw them.
My case worker had notified me on December 3 that my appeal had been approved. And that was a sweet victory! My disability date had been dtermined to be November 2007, when I was diagnosed with breast cancer. It had been agreed that with the following four surgeries, six months of chemo, being diagnosed with leukemia, failing all treatment options, and facing a bone marrow transplant, along with my behavioral health "issues", that I had been unable to work and that it was reasonable to expect that I would not be working any time soon. This included the begininning of monthly benefits as well as back-pay for the time after the five month waiting period.
The November 2007 date also meant that in just a year basically, November 2009, I would receive Medicare, a huge deal because it would help tremendously with the very long road of recuperation from the tranplant and potential hurdles along the way.
However, my file had been randomly selected for quality assurance review, delaying payment for two weeks. Just procedure. And I was almost glad because I hoped that it would be brought to their attention the ridiculous battle I had had to fight to be approved.
Nothing came. And nothing came. Then a letter arrived the day before Chrsitams Eve, dated December 15 but delayed because we had not had postal delivery due to weather. I am tempted to post the actual letter on my site so that you can read, firsthand, what it said. Not only was it an incredibly poorly written letter full of double negatives and basic confusion, it essentially brought the cheery news that although they agree I am disabled, I am not disabled according to their medical definition. The harmless quality review resulted in a reversal of their decision, and their claim that I cannot be approved because of my medical condition, but I am being considered for approval based on my mental health condition. You know, the one I have because of my medical condition? And they kindly chose a random date of eligibility of May 2008, conveniently erasing the backpay and drastically changing the date that I will receive Medicare.
It concluded that a final decision of this new determination was yet to be made and to not contact the local SSA office until notified. Well, you know me, I was down there the next morning, quite a task with our weather and roads, to speak with my caseworker. (Who, by the way, is awesome and the saving grace of this experience). She had just received the internal notice that the new decision was a go. So gone is the backpay to put towards transplant caregiver expenses and some late bills. Gone is seven months of Medicare coverage. And gone was the reassuarnce that if you fight the good fight, do what you need to in navigating a painfully slow and frustrating bureacracy, that the truth prevails. And who knows even when these payments will finally arrive/begin.
Even my case worker, and her boss, are dismayed. I of course filed an appeal on the spot. This will consist of a hearing. The SSA office gives you a list of local attorneys, but at this point I will represent myself, if I am still here. My case worker says that this stage can last years. It is ludicrous that I should have to give half my benefits to pay for a contingency-fee case. I feel that I have the truth, the facts, and the documentation on my side. The system is always running behind on their information because it is so long after submitting one's records until they are reviewed that alot can change. As long as it does not null my right to potentially appeal the next ruling, I want to go before the judge and explain the whole story. Frankly, if knowing that a person will certainly die without a transplant, and that the person might die because of the tranplant, and that the recovery is not days or weeks but months and years, if all that doesn't make me medically eligible for Disability benefits, I don't know what does.
I realize I have written a very long post, but this information is vital. I want you to know about what the system is like. I want you to know the agony that they can put you through. I want you to know that if you ever need SSA Disability, this could happen to you. I want you to know that if a person like me, who has many resources and support available to them, has to fight this hard, there are many others out there fighting and losing too. This is what my tax dollars are doing for me. This is what your tax dollars are doing as well.
I am so angry I can't convey it properly. I have learned that a SSA decision means nothing. It can easily change. I have learned that people who have subjective conditions can easily prevail over a black and white, life and death, disease. I have learned that in the time of need, the SSA isn't there. I have learned that playing by the rules does not mean success. I have learned that even when all one's focus should be on taking care of themselves and enjoying each day as possibly one of the last, instead you spend a great deal of time fighting for things which you thought were already there.
Screw them.
Donor List Update
I owe a HUGE apology to some donors! While putting away some Christmas gifts in my 3 1/2 year old's room tonight, I found a couple of envelopes from the bank containing notifications of donations received. I am so sorry to those of you who since I did not know you had donated, I had not thanked nor posted your names on my blog.
It is a day by day existence here and I had not realized that the envelopes were missing. I hope you accept my apology and I hope you know that your contributions are greatly appreciated. I will get my site updated soon to include you as part of the team that is helping me fight this disease.
I have also become aware that many who had donated via PayPal had neither been listed nor thanked. The blame is mine on this one! I really hadn't realized just how behind I am in things.
My end of the year resolution is to be caught up on my fundraising activities to date before the new year. Why wait for the new year to set goals?!
Bottom line, every dollar received is one more piece of armor. Thank you to each of you who has donated to the Fund.
It is a day by day existence here and I had not realized that the envelopes were missing. I hope you accept my apology and I hope you know that your contributions are greatly appreciated. I will get my site updated soon to include you as part of the team that is helping me fight this disease.
I have also become aware that many who had donated via PayPal had neither been listed nor thanked. The blame is mine on this one! I really hadn't realized just how behind I am in things.
My end of the year resolution is to be caught up on my fundraising activities to date before the new year. Why wait for the new year to set goals?!
Bottom line, every dollar received is one more piece of armor. Thank you to each of you who has donated to the Fund.
Merry Christmas!
From our house to yours, Merry Christmas! We hope all of you enjoyed a day of joy and peace with family and friends. We had a good day, made possible by many of you who sent or delivered gifts and cards. I will post some pictures at some point, but suffice it to say, Santa made it her, thanks to his magical sleigh, to deliver gifts galore for John Paul and Brennan. Even the big people were delighted with their special deliveries!
So much to write and share, but this space belongs to the words from a warm heart, a Mom who watched her boys delight in the magic of Christmas.
We are grateful to all of you who have supported us in so many ways the past year. And at Christmas, as we pause to reflect on the miracle of the birth of Christ, I am reminded of the miracles that work daily in our lives. And YOU are part of our miracle.
Many blessings!
Thursday, December 18, 2008
A Few Hours Later.....
It's still snowing! Craig just finished snowblowing. He's been at work for almost four hours! We now have over three feet of snow.
Snowstorm!
Holy smokes! As I write, it has already snowed over two feet in the last twenty-four hours, with more on the way. Needless to say, schools are closed. Actually, everything is closed, from government to roads to airports to garbage service and beyond. Chains are required to drive in our neighborhood!
We are hunkered down for a few days, with another storm forecasted for Sunday, then another for Wednesday. It will definitely be a white Christmas!
I've been up all night, as I frequently am, and took a few pics which I am posting, along with some from the ongoing dig-out. I love the night pictures. Enjoy.
Monday, December 15, 2008
Transplant Progress/Health Update
What's going on with the transplant? I don't really know! As my Donor Search Coordinator told me last week, it's a lot of hurry up and wait. What I do know is that of the 994 full potential matches, 14 have been identified of having a match of at least 8 of 10 points. (There could be more, but only 14 have been tested to the 8 points). So now those donors will be contacted to see if they are still willing and able and if so, to schedule secondary testing.
In the meantime, my mom is being sampled for some DNA information and I am off to the lab today for a special 7 vial lab draw for further typing.(Did I mention it is now 5 degrees here?).
Other than that, my chemo dosage has been tripled to 1500mg per day, plus the other plethera of meds. I go to the oncologist weekly to basically get my labs and discouraging news. Okay, the bad attitude is creeping out, but sometimes I get tired of paying money to find out that nothing is working. (My counts got a little worse despite the increase in chemo doseage). Anyways, I imagine this should pretty much be how it goes until I go to Seattle. My weekly visit is tomorrow, so perhaps there will be something different this week.
I continue to visit with my friends in behavioral health. They say I am much more normal now.
In the meantime, my mom is being sampled for some DNA information and I am off to the lab today for a special 7 vial lab draw for further typing.(Did I mention it is now 5 degrees here?).
Other than that, my chemo dosage has been tripled to 1500mg per day, plus the other plethera of meds. I go to the oncologist weekly to basically get my labs and discouraging news. Okay, the bad attitude is creeping out, but sometimes I get tired of paying money to find out that nothing is working. (My counts got a little worse despite the increase in chemo doseage). Anyways, I imagine this should pretty much be how it goes until I go to Seattle. My weekly visit is tomorrow, so perhaps there will be something different this week.
I continue to visit with my friends in behavioral health. They say I am much more normal now.
When Sally Met The Media: Part 2
I received an unexpected call last week from the reporter who had done my original television interview in November. She said she was calling to follow up, find out how I am doing, and ask if they could do a feel-good follow-up story. I agreed to do it if it was in fact a feel-good follow-up story, with the focus on organ donation and that I have a donor out there who may save my life. No negatives, no health insurance issues.
If you didn't see the story, I'll post it to the right by the original stories. Watch it and see what you take from it.
I just want to make clear that it was Seattle Cancer Care Alliance that was requiring the large amount of money upfront, not the health insurance company. Also, I am grateful for the news story opening doors for me in that I was able to speak with people to gather information and ask qusetions that I likely otherwise would not have had access to. But I don't want to become a news story to "stir the pot".
Please don't think that the larger issue of cost vs. coverage is gone. It hasn't gone away for me or for others. The reporter is very accurate that I still intend to form a Foundation when I am well again. There is much to be done to help patients navigate the business side of medicine.
If you didn't see the story, I'll post it to the right by the original stories. Watch it and see what you take from it.
I just want to make clear that it was Seattle Cancer Care Alliance that was requiring the large amount of money upfront, not the health insurance company. Also, I am grateful for the news story opening doors for me in that I was able to speak with people to gather information and ask qusetions that I likely otherwise would not have had access to. But I don't want to become a news story to "stir the pot".
Please don't think that the larger issue of cost vs. coverage is gone. It hasn't gone away for me or for others. The reporter is very accurate that I still intend to form a Foundation when I am well again. There is much to be done to help patients navigate the business side of medicine.
John Paul's 6th Birthday Party
John Paul turns six December 20th! We celebrated with a super fun party at the Spokane Valley YMCA last Saturday. John Paul and his friends climbed the rock wall (okay, so some of the kids, including John Paul, were not quite ready for that), played basketball, and went swimming. They took a break for snacks and birthday cake. I think everyone has a good time and John Paul felt really special that all his friends were there to hang out with him.
Craig and I were very grateful for all the parents who braved our horrible weather to bring their kids to the party. Not only is turning six an inherently big deal, but this year it seems especially important to us that we celebrate the joys when we can. So the party downsizing was safe for an extra year....
To the right you can view a slideshow of photos if you like (just figured out how to do this feature). If I figure out how to post video, I'll add some from the kids swimming and going down the big slide.
Mid December in Spokane
Not only is it crazy to be up writing at 3:58 a.m., our weather is insane! It is currently 10 degrees, with a windchill of around -10 degrees. We are experiencing gusts of 20 to 30 mph and it is COLD! The high's for the next few days are single digits and 0. Yikes!
We did brave the outdoors for church this morning, followed by the boys' rehearsal for their Christmas Program at church. Back out again for the show at 5:00. It was adorable, silly, and special.
We are enjoying the Christams season, even though the boys are sure that we will forget what day is Christams and time to open gifts. The outside lights are up (Craig did a great job) and thank goodness they were done before all this arctic air moved in. The tree is up and a few presents get wrapped and added as I can. Many gifts have arrived from family and friends. We are again amazed with the generosity of so many.
John Paul was also in the All Saints Christmas Program with all of his classmates. He was so nervous for his first time up on stage. But we did a wonderful job. Although I wasn't able to go, Craig videotaped it for me. If I ever figure out how to do it, I will post a clip of his performance and both boy's in the Church Program. I was amazed to see his body language with his pretty classmate standing next to him. I think a crush is in the works!
Brennan and John Paul visited Santa last week. It was awesome! Mrs. Clause and Mr. Clause were very patient and read their letters start to finish.
Craig had a playdate with our friend Tom. They went goose hunting and had some good man-time.
While I am sure I am forgetting plenty of what's going on as we enjoy this month, I thought I would share with you some of the fun times we are having. It is a very important season for me for many reasons, and I am enjoying every minute of it that I can.
Wishing you the magic.......
Thanksgiving Fun
We had a great Thanksgiving, celebrating with my best friend, her folks, and her grandpa. For the last several years we have been invited to The Clark's for the day, enjoying a wonderful home cooked meal, football, and a good time with our surrogate Spokane family. Grandpa Swanson is the 87 year-old patriarch who has so kindly welcomed us. Mr. and Mrs. Clark are Grandpa Gary and Grandma Pat to the boys. And Aunt Jenny is also Brennan's Godmother and my best friend. We feel so blessed to have been accepted as part of their extended family.
Brennan made beautiful napkin rings for the table. We has very proud to have us use them.
I hope all of you were able to be with "family" and had a special day.
Wednesday, December 10, 2008
Truck-A-Thon.... Who Knew?!
I have had a Truck-A-Thon in my honor! How many people can say that?
My mother-in law's sister and husband, Danny and Colleen Rittinger of Galloway, Ohio, organized and held the fundraiser. Danny is a truck driver and they asked many of their friends and professional contacts to pledge a dollar amount for every mile he drove during a specific week. While Danny was trucking up and down the I-75 corridor between Ohio and Florida, their efforts and the generous support of their donors raised $4,000 for the A Little For a Lot fundraising campaign! That is super cool!
In addition to holding a fundraising event, they have also been working hard on my behalf and indirectly many others out there with situations similar to mine, by contacting Congress members, governors, and others to raise awareness of the gaps in what health insurance companies cover versus what transplants actually cost.
Many thanks, Danny and Colleen, for reaching out and supporting our family as part of your extended family. And I just think it's so cool that I have had a Truck-A-Thon!!
My mother-in law's sister and husband, Danny and Colleen Rittinger of Galloway, Ohio, organized and held the fundraiser. Danny is a truck driver and they asked many of their friends and professional contacts to pledge a dollar amount for every mile he drove during a specific week. While Danny was trucking up and down the I-75 corridor between Ohio and Florida, their efforts and the generous support of their donors raised $4,000 for the A Little For a Lot fundraising campaign! That is super cool!
In addition to holding a fundraising event, they have also been working hard on my behalf and indirectly many others out there with situations similar to mine, by contacting Congress members, governors, and others to raise awareness of the gaps in what health insurance companies cover versus what transplants actually cost.
Many thanks, Danny and Colleen, for reaching out and supporting our family as part of your extended family. And I just think it's so cool that I have had a Truck-A-Thon!!
Social Security Disability-Approved At Last!
Success!!! I have finally been approved for Social Secuity Disability! Although I will never understand why I was denied in the first place, I won my appeal!
This makes such a difference for me, on many levels. First, I will receive monthly benefits, which will ease the financial burden on my family while I am unable to work. As I have been unable to work for over a year, our family finances have been severely impacted and this will help immensely. I can also now be my own donor to my A Little From A Lot fundraising campaign. And that feels good.
Second, I will be eligible for Medicare two years from the date of my eligibility. Down the line, this will make a big difference in my ongoing medical expenses by providing a secondary insurance.
Third, and almost more important, is that I fought and I won. I finally feel validated and that my efforts have paid off to help me help myself. I refused to go away, to just accept "no". I had literally gone to the Social Security Administration office and told them I wouldn't leave until someone helped me figure this disaster out. And I got the help I needed (Thanks again, Michele. You rock!). Although I can tell you that Mr. Window #1 and I will likely never be friends.
It feels good. And I also will hopefully get one of those super cool handicap plackards for the car.....
Lessons learned and my message about SSA Disability to others:
1. Don't count on the system making sense nor to move quickly.
2. Keep fighting. The preliminary decisions are not made by medical professionals. It is apparently not until you are initially denied and move through the appeal process that medical professionals rather than administrators become involved in reviewing your medical records.
3. Don't count on the system making sense nor to move quickly.
One battle crossed off the list. Hooray! But I will be back, when I am better, to keep fighting this system, to try to affect change. It shouldn't be this way. And I know I have been fortunate to have the resources and support to fight the system for this long and this hard. Many people don't have that or perhaps don't know how to do it.
This makes such a difference for me, on many levels. First, I will receive monthly benefits, which will ease the financial burden on my family while I am unable to work. As I have been unable to work for over a year, our family finances have been severely impacted and this will help immensely. I can also now be my own donor to my A Little From A Lot fundraising campaign. And that feels good.
Second, I will be eligible for Medicare two years from the date of my eligibility. Down the line, this will make a big difference in my ongoing medical expenses by providing a secondary insurance.
Third, and almost more important, is that I fought and I won. I finally feel validated and that my efforts have paid off to help me help myself. I refused to go away, to just accept "no". I had literally gone to the Social Security Administration office and told them I wouldn't leave until someone helped me figure this disaster out. And I got the help I needed (Thanks again, Michele. You rock!). Although I can tell you that Mr. Window #1 and I will likely never be friends.
It feels good. And I also will hopefully get one of those super cool handicap plackards for the car.....
Lessons learned and my message about SSA Disability to others:
1. Don't count on the system making sense nor to move quickly.
2. Keep fighting. The preliminary decisions are not made by medical professionals. It is apparently not until you are initially denied and move through the appeal process that medical professionals rather than administrators become involved in reviewing your medical records.
3. Don't count on the system making sense nor to move quickly.
One battle crossed off the list. Hooray! But I will be back, when I am better, to keep fighting this system, to try to affect change. It shouldn't be this way. And I know I have been fortunate to have the resources and support to fight the system for this long and this hard. Many people don't have that or perhaps don't know how to do it.
Friday, December 5, 2008
Just Tired
Instead of running from it, like usual, I have decided to be honest with myself and with you. I am running out of steam. Each night I plan for the next day to be the day that I get caught up. I am simply not able to do that anymore.
I have regret that I have not returned calls, looked at email, updated my site, written thank you's to my donors, cleaned house, made dinner, etc. Today I admit that I have precious little energy and not enough to be on top of things like I used to be.
From this day forward, I will do what I can about the long "To Do" List that seems to grow longer daily. But I am going to give myself permission to let it go. I am increasingly aware of the ticking clock as the days between now and the transplant grow shorter. And the energy that I have in those days I will direct towards my family. Whether it's making memories or recalling memories, participating or watching, being a mom and a wife and a friend and a daughter is how I choose to spend this time.
I know you will understand this, especially those of you with me from the beginning.
Thank you to each and evry one of you who read this site. Thank you to all of you who pray for me. Thank you to all of you who have donated to my fund.
I'm going to rest. You'll still hear from me. Don't worry about that! And this is not a "goodbye", just a "why". Take care and talk to you soon.
I have regret that I have not returned calls, looked at email, updated my site, written thank you's to my donors, cleaned house, made dinner, etc. Today I admit that I have precious little energy and not enough to be on top of things like I used to be.
From this day forward, I will do what I can about the long "To Do" List that seems to grow longer daily. But I am going to give myself permission to let it go. I am increasingly aware of the ticking clock as the days between now and the transplant grow shorter. And the energy that I have in those days I will direct towards my family. Whether it's making memories or recalling memories, participating or watching, being a mom and a wife and a friend and a daughter is how I choose to spend this time.
I know you will understand this, especially those of you with me from the beginning.
Thank you to each and evry one of you who read this site. Thank you to all of you who pray for me. Thank you to all of you who have donated to my fund.
I'm going to rest. You'll still hear from me. Don't worry about that! And this is not a "goodbye", just a "why". Take care and talk to you soon.
Tuesday, December 2, 2008
Transplant Finances
Wow... Just read what I wrote the other night. I need to learn the concept of brevity!
Many of you have asked for an overview explanation of the fincial status of the transplant. My best and most honest answer is that I really don't know. What I believe to be correct, at this time and based on conversations with my health insurance company and Seattle Cancer Care Aliance, and with no party willing to put anything in writing, is as follows:
1. I am not required to pay anything up front to SCCA. Rather, any and all charges exceeding my insurance coverage will be billed to me at or after the services are rendered.
2. There is absolutely no way to know, or limit, what those charges may be.
3. I have raised enough money to cover my Seattle expenses, with the possible exception of hiring a caregiver.
I finally received the Benefit Coverage Booklet from Group Health and have had a Rep assigned to me to help me understand and navigate my coverage and out-of-pocket expenses. Also to our surprise, a new benefit year began October 1 so I now have a new co-pay rate, new co-insurance rate, a new deductible to be met, and a new annual max out of pocket.
In regards to what I may owe after the transplant, I have really struggled with this. It is quite possible I could owe hundreds of thousands of dollars. I have struggled with how one acquires that level of debt knowing that it cannot be repaid. Yes, I understand that it's different than maxing a credit card with no intent/ability to pay. I get it that it's my life on the line. But ultimately I feel that I am still knowingly receiving services for which I have no ability to pay for.
My family, my friends, my doctors, my behavioral health team, my postman, and so on all have said "screw it" or similar. And I am not interested in being a martyr either. But the conflict remains that by doing this, I am willingly choosing to be a part of the problem. But I would rather be alive.
Many of you have asked for an overview explanation of the fincial status of the transplant. My best and most honest answer is that I really don't know. What I believe to be correct, at this time and based on conversations with my health insurance company and Seattle Cancer Care Aliance, and with no party willing to put anything in writing, is as follows:
1. I am not required to pay anything up front to SCCA. Rather, any and all charges exceeding my insurance coverage will be billed to me at or after the services are rendered.
2. There is absolutely no way to know, or limit, what those charges may be.
3. I have raised enough money to cover my Seattle expenses, with the possible exception of hiring a caregiver.
I finally received the Benefit Coverage Booklet from Group Health and have had a Rep assigned to me to help me understand and navigate my coverage and out-of-pocket expenses. Also to our surprise, a new benefit year began October 1 so I now have a new co-pay rate, new co-insurance rate, a new deductible to be met, and a new annual max out of pocket.
In regards to what I may owe after the transplant, I have really struggled with this. It is quite possible I could owe hundreds of thousands of dollars. I have struggled with how one acquires that level of debt knowing that it cannot be repaid. Yes, I understand that it's different than maxing a credit card with no intent/ability to pay. I get it that it's my life on the line. But ultimately I feel that I am still knowingly receiving services for which I have no ability to pay for.
My family, my friends, my doctors, my behavioral health team, my postman, and so on all have said "screw it" or similar. And I am not interested in being a martyr either. But the conflict remains that by doing this, I am willingly choosing to be a part of the problem. But I would rather be alive.
Monday, December 1, 2008
Medical Update
So far, I haven't really liked having leukemia.
No oncologist appointment last week. It was kind of nice to have the week off. I guess I get one if my doctor does. My next oncology appointment is this coming Thursday. Boy will she be surprised on the fun she has missed!
I don't remember if I wrote about starting a different chemo. It is a totally different kind than the ones I have tried so far in that it is not specific to my type of leukemia. My best explanation is that it is more general in the sense that it is designed to kill platelets. I have to admit that I delayed on starting to take it because I was scared by the drug insert info. But when one of my behavioral health team members told me I could die if I didn't take it, I got over the insert info pretty quick.
So, I learned that I am transplant bound. I started a new chemo. And the there was my pain management appointment. You may have noticed that I write alot at night. My already limited sleep has recently become almost non-existent. I can fall asleep on a dime, but when my meds wear off, I'm back up, taking meds, waiting for them to kick in. Once comfortable again, the smae thing again. So my pain management doctor changed/increased my evening dose on the 24th (the same day the interviews aired). I was loopy that night and overslept the next morning. But at last a good night's sleep! Unfortunately, it was a one night deal and my pain has continued to increase and I have only been able to get a few hours of sleep a day.
Last Friday my doctor was gone but I saw a colleague who gave me a steroid injection. But by Saturday night I caved and went to the ER. Lots of fun there-apparently it is officially the holiday season as more drunks and domestic violence spills into the ER's.... Anyways, spent the night there with Dr. Grumpy and declined to be admitted because I wanted to be home when the kids got up. So I left with my prescriptions, a new problem of seriously low potassium, another night of not sleeping, and a few stories to tell.
Big mistake...should have stayed. I was back with my tail between my legs at midday. This time I got Dr. Helpful, new meds, and was able to sleep three straight hours tonight. It's a start, right? But I have to tell you the irony of going back, getting on the right track of changing my meds (I would rather try that before being admitted), then going to the 24 hour pharmacy to be told that my health insurance requires pre-authorization to fill one of the two prescriptions... It never ends.
This week should be interesting. Since I received a call from SCCA to schedule me for a consultation on the 11th and then had to explain to them that I have already had my consult and what I need is a transplant, the Transplant Coordinator at Group Health has promised that her goal for today will be to try to get to the bottom of this. Frankly I was amazed that when SCCA called that their records/database didn't show that I had already been there. I even have the little green U card showing my mebership.... Do they keep their records by card catalog in the basement? Poor lady, having me explain to her that I wasn't inclined to repeat what I had already done, nor incur the out-of-pocket, travel, child care, etc., to do the same thing over again that I am sure my insurance would not be inclined to cover again. You know that $800 bill that is already paid????
Many of you have asked for a timeline for going to Seattle, transplant, etc. The best I can say at this point is that the Transplant Coordinator(TC) at my health insurance told me probably January. On top of my pre-transplant appointments and tests at SCCA, a donor must be identified and the actual procurement scheduled. Also, SCCA submits to my health insurance their proposed treatment plan. The TC has told me it is frequently denied if there is any part that is considered new or experimental. It is then up to SCCA to resubmit to the insurance with established parameters. Obviously, all these steps take time and I have been told this is the hardest time of the year to get a donor to commit to their part in the process due to the holiday season. So, the TC says I am most likely looking at January. But since the health insurance company is only a part of the equation, I also want to hear straight from SCCA what they think the timeline might be and will keep you psoted.
So hopefully with my oncologist and my pain management doctor back in town I will continue to make progress towards less pain, more sleep, and more answers. That makes Sally a happier girl. But I can't vouch for what their week might be like.
No oncologist appointment last week. It was kind of nice to have the week off. I guess I get one if my doctor does. My next oncology appointment is this coming Thursday. Boy will she be surprised on the fun she has missed!
I don't remember if I wrote about starting a different chemo. It is a totally different kind than the ones I have tried so far in that it is not specific to my type of leukemia. My best explanation is that it is more general in the sense that it is designed to kill platelets. I have to admit that I delayed on starting to take it because I was scared by the drug insert info. But when one of my behavioral health team members told me I could die if I didn't take it, I got over the insert info pretty quick.
So, I learned that I am transplant bound. I started a new chemo. And the there was my pain management appointment. You may have noticed that I write alot at night. My already limited sleep has recently become almost non-existent. I can fall asleep on a dime, but when my meds wear off, I'm back up, taking meds, waiting for them to kick in. Once comfortable again, the smae thing again. So my pain management doctor changed/increased my evening dose on the 24th (the same day the interviews aired). I was loopy that night and overslept the next morning. But at last a good night's sleep! Unfortunately, it was a one night deal and my pain has continued to increase and I have only been able to get a few hours of sleep a day.
Last Friday my doctor was gone but I saw a colleague who gave me a steroid injection. But by Saturday night I caved and went to the ER. Lots of fun there-apparently it is officially the holiday season as more drunks and domestic violence spills into the ER's.... Anyways, spent the night there with Dr. Grumpy and declined to be admitted because I wanted to be home when the kids got up. So I left with my prescriptions, a new problem of seriously low potassium, another night of not sleeping, and a few stories to tell.
Big mistake...should have stayed. I was back with my tail between my legs at midday. This time I got Dr. Helpful, new meds, and was able to sleep three straight hours tonight. It's a start, right? But I have to tell you the irony of going back, getting on the right track of changing my meds (I would rather try that before being admitted), then going to the 24 hour pharmacy to be told that my health insurance requires pre-authorization to fill one of the two prescriptions... It never ends.
This week should be interesting. Since I received a call from SCCA to schedule me for a consultation on the 11th and then had to explain to them that I have already had my consult and what I need is a transplant, the Transplant Coordinator at Group Health has promised that her goal for today will be to try to get to the bottom of this. Frankly I was amazed that when SCCA called that their records/database didn't show that I had already been there. I even have the little green U card showing my mebership.... Do they keep their records by card catalog in the basement? Poor lady, having me explain to her that I wasn't inclined to repeat what I had already done, nor incur the out-of-pocket, travel, child care, etc., to do the same thing over again that I am sure my insurance would not be inclined to cover again. You know that $800 bill that is already paid????
Many of you have asked for a timeline for going to Seattle, transplant, etc. The best I can say at this point is that the Transplant Coordinator(TC) at my health insurance told me probably January. On top of my pre-transplant appointments and tests at SCCA, a donor must be identified and the actual procurement scheduled. Also, SCCA submits to my health insurance their proposed treatment plan. The TC has told me it is frequently denied if there is any part that is considered new or experimental. It is then up to SCCA to resubmit to the insurance with established parameters. Obviously, all these steps take time and I have been told this is the hardest time of the year to get a donor to commit to their part in the process due to the holiday season. So, the TC says I am most likely looking at January. But since the health insurance company is only a part of the equation, I also want to hear straight from SCCA what they think the timeline might be and will keep you psoted.
So hopefully with my oncologist and my pain management doctor back in town I will continue to make progress towards less pain, more sleep, and more answers. That makes Sally a happier girl. But I can't vouch for what their week might be like.
When Sally Met The Media, The Insurance Compay and SCCA
Wow, what I just wrote really confused me, and it's my life! So I am going to just start writing, by topic and timeline. Kind of.
I wrote ten days or so ago about the last time I was at my oncologist's and the reality of having run out of all other treatment options other than the bone marrow transplant. I am still adjusting to this. Bottom line is I am really afraid. And really hopeful. And very anxious.
At the same time that we were dealing with this outcome, many of my local supporters were contacting local media outlets in outrage that as a patient I was having to deal with the only viable option to save my life but as a consumer I could barely even do that because of the out-of-pocket cost I would need to even receive the transplant. So literally as I was wondering how I could pull myself out of the emotional pit I was falling a little back into, my phone began to ring. And ring and ring and ring.
Because of the incredible support and care of many in Spokane (I am not sure of blogging rules so I will not name names), our local tv stations were receiving calls that someone needed to do a story to let people know about Sally Land. I had been forewarned the night of my doctor appointment that I might hear from someone in the media, but baby, I had no idea what was in store!
I've never dealt with the media other than my perp walk. No, I am kidding. Just a joke to lighten things up- no perp walk. So the first person who reached me I agreed to do an interview with. I could now write all I could remember about the experience and all the calls and the unannounced door knocking, etc. But the end result was one interview, which aired on Monday, November 24. I have posted the links at the upper right of my homepage if you'd like to watch. (I have heard that sometimes the video won't play.) It pretty much speaks for itself.
I will say that the process was interesting but very stressful. Suddenly I was speaking with higher ups at the health insurance company, their local people and their P.R. people in Seattle. In the end, they could not tell me that my policy would cover all my transplant expenses. They did explain their confidence that my coverage was thorough and they felt optimistic that my expenses could be reasonable. But they, of course, can't tell me what my personal medical jouney will be and what that may entail in regards to how Seattle bills for the transplant and how the insurance allots their coverage.
Ultimately I was grateful for their time and attention but could not be given the assurance that my medical expenses would be covered. Group Health realy put the onus on Seattle Cancer Care (SCCA). Essentially it was explained that I would have to navigate this through SCCA because I would receive their services and be responsible for their services. My insurance would cover what it covers and then I would be responsible for the rest.
So I began the process of working with their Patient Finance Department. In conclusion, I expect that the radiation dial will accidentally be turned too high when I get there.... SCCA can't tell me what it will cost either. They use averages to ballpark the fees a patient can expect. They bill insurance and then the patient is responsible for what's left. But no one knows what that will be. Unlike Group Health, they explained that my $250,000 transplant benefit can quickly be exhausted. I kept coming back to needing the explanation between the $250,000 benefit (really $200,000 as $50,000 is set aside for typing and donor procurement) and the $379,000 quoted average transplant cost.
NO ONE WILL TELL ME WHAT THE CONTRACTED RATE IS. NO ONE WILL PUT ANYTHING IN WRITING. THIS IS SCARY.
Group Health has a contracted rate with SCCA. Neither party will disclose this rate. So they tell you it costs "X" but they already knows it costs "Y". THIS is why the insurance company tells you they think you have great coverage. They know something you don't: what it actually costs.
Ultimately, I received the good news from SCCA that I had been "misquoted" that I would need the $179,000 deposit to get started. Apparently, the Representatives that have told me that were incorrect. I have now been told that because I have health insurance that I will only need all my Seattle housing and living expenses, hired caregiver expenses if I can't get volunteers, and the "anticipated" medical out-of-pocket expenses to finacially be ready to get started. AND THANKS TO ALL OF YOU, I HAVE THAT!!!
Until I get my transplant date, and oh yeah, a donor, I will not be able to really figure out these details. BUT WHAT A RELIEF TO KNOW THAT I AM IN THE BALLPARK! What SCCA will do is bill me back-end, meaning after insurance has paid all they will pay, I then become responsible for the expenses. I will write more about that in a separate post because you probably are bored and have already stopped reading...... And it kind of is its own subject.
My final thoughts. I started this post talking about the media and have ended in finance. Now you see how my mind works these days! Thank you to my Spokane friends who networked with Group Health and the local media. Even though it was really a very crazy experience, your efforts opened doors to people who I would otherwise not have had access to. And even though some of the answers I got weren't what I wanted to hear, I made huge progress in getting the information and that was a big deal. To those of you who are in media or who work with them, my hat is off to you!
Ultimately I hope that I can work with the media to bring light to the basic issue of transplant cost versus coverage. But I guess that doesn't grab viewer ears like the anger of a dying mother. But they did do what they promised and helped me get answers, for which I am very grateful. And I can renew my vow to keep fighting for this cause down the line. I have offered my assistance to Group Health as well as SCCA should they decide they would like to work on fixing their parts in a very broken system. My suggestion would be to start by giving people factual information in writing.
I wrote ten days or so ago about the last time I was at my oncologist's and the reality of having run out of all other treatment options other than the bone marrow transplant. I am still adjusting to this. Bottom line is I am really afraid. And really hopeful. And very anxious.
At the same time that we were dealing with this outcome, many of my local supporters were contacting local media outlets in outrage that as a patient I was having to deal with the only viable option to save my life but as a consumer I could barely even do that because of the out-of-pocket cost I would need to even receive the transplant. So literally as I was wondering how I could pull myself out of the emotional pit I was falling a little back into, my phone began to ring. And ring and ring and ring.
Because of the incredible support and care of many in Spokane (I am not sure of blogging rules so I will not name names), our local tv stations were receiving calls that someone needed to do a story to let people know about Sally Land. I had been forewarned the night of my doctor appointment that I might hear from someone in the media, but baby, I had no idea what was in store!
I've never dealt with the media other than my perp walk. No, I am kidding. Just a joke to lighten things up- no perp walk. So the first person who reached me I agreed to do an interview with. I could now write all I could remember about the experience and all the calls and the unannounced door knocking, etc. But the end result was one interview, which aired on Monday, November 24. I have posted the links at the upper right of my homepage if you'd like to watch. (I have heard that sometimes the video won't play.) It pretty much speaks for itself.
I will say that the process was interesting but very stressful. Suddenly I was speaking with higher ups at the health insurance company, their local people and their P.R. people in Seattle. In the end, they could not tell me that my policy would cover all my transplant expenses. They did explain their confidence that my coverage was thorough and they felt optimistic that my expenses could be reasonable. But they, of course, can't tell me what my personal medical jouney will be and what that may entail in regards to how Seattle bills for the transplant and how the insurance allots their coverage.
Ultimately I was grateful for their time and attention but could not be given the assurance that my medical expenses would be covered. Group Health realy put the onus on Seattle Cancer Care (SCCA). Essentially it was explained that I would have to navigate this through SCCA because I would receive their services and be responsible for their services. My insurance would cover what it covers and then I would be responsible for the rest.
So I began the process of working with their Patient Finance Department. In conclusion, I expect that the radiation dial will accidentally be turned too high when I get there.... SCCA can't tell me what it will cost either. They use averages to ballpark the fees a patient can expect. They bill insurance and then the patient is responsible for what's left. But no one knows what that will be. Unlike Group Health, they explained that my $250,000 transplant benefit can quickly be exhausted. I kept coming back to needing the explanation between the $250,000 benefit (really $200,000 as $50,000 is set aside for typing and donor procurement) and the $379,000 quoted average transplant cost.
NO ONE WILL TELL ME WHAT THE CONTRACTED RATE IS. NO ONE WILL PUT ANYTHING IN WRITING. THIS IS SCARY.
Group Health has a contracted rate with SCCA. Neither party will disclose this rate. So they tell you it costs "X" but they already knows it costs "Y". THIS is why the insurance company tells you they think you have great coverage. They know something you don't: what it actually costs.
Ultimately, I received the good news from SCCA that I had been "misquoted" that I would need the $179,000 deposit to get started. Apparently, the Representatives that have told me that were incorrect. I have now been told that because I have health insurance that I will only need all my Seattle housing and living expenses, hired caregiver expenses if I can't get volunteers, and the "anticipated" medical out-of-pocket expenses to finacially be ready to get started. AND THANKS TO ALL OF YOU, I HAVE THAT!!!
Until I get my transplant date, and oh yeah, a donor, I will not be able to really figure out these details. BUT WHAT A RELIEF TO KNOW THAT I AM IN THE BALLPARK! What SCCA will do is bill me back-end, meaning after insurance has paid all they will pay, I then become responsible for the expenses. I will write more about that in a separate post because you probably are bored and have already stopped reading...... And it kind of is its own subject.
My final thoughts. I started this post talking about the media and have ended in finance. Now you see how my mind works these days! Thank you to my Spokane friends who networked with Group Health and the local media. Even though it was really a very crazy experience, your efforts opened doors to people who I would otherwise not have had access to. And even though some of the answers I got weren't what I wanted to hear, I made huge progress in getting the information and that was a big deal. To those of you who are in media or who work with them, my hat is off to you!
Ultimately I hope that I can work with the media to bring light to the basic issue of transplant cost versus coverage. But I guess that doesn't grab viewer ears like the anger of a dying mother. But they did do what they promised and helped me get answers, for which I am very grateful. And I can renew my vow to keep fighting for this cause down the line. I have offered my assistance to Group Health as well as SCCA should they decide they would like to work on fixing their parts in a very broken system. My suggestion would be to start by giving people factual information in writing.
Writing Backwards
It has been not only quite a while since I have written but alot has happened in that time. Even as I wrote the last time, there was quite a bit going on but that I wasn't ready to write about and share. So now I find myself trying to write about things my peabrain memory can barely recall!
Because my writings are posted in chronological order, you first read the latest info before the first info. So bare with me as I write backwards so it reads forewards. And it seems I am already not making sense. Look at the dates and times on the posts and hopefully you'll understand what I mean.
Okay, we are in trouble.
1. I am already rambling.
2. I am already not making sense.
3. If you are involved in anything I write, please correct me when I get confused.
Oh yeah, welcome back to Sally Land.
Because my writings are posted in chronological order, you first read the latest info before the first info. So bare with me as I write backwards so it reads forewards. And it seems I am already not making sense. Look at the dates and times on the posts and hopefully you'll understand what I mean.
Okay, we are in trouble.
1. I am already rambling.
2. I am already not making sense.
3. If you are involved in anything I write, please correct me when I get confused.
Oh yeah, welcome back to Sally Land.
Wednesday, November 26, 2008
A Heart Filled With Thanks
This year is perhaps the most profound Thanksgiving I will ever experience. Despite all the troubles, fears, stress, and unknown, I have a rather unique perspective of really being able to see what is important in the "big picture". And with that perspective comes an overwhelming sense of having been incredibly blessed in my life. I am truly a fortunate person for all that is in my life. I have the "things" that really matter to me.
It is so easy and so natural to focus on our hardships and what we feel we need. Sometimes, I am so caught up on all that I have lost or feel like I am losing that I forget to see what I have and have had.
Tomorrow my family will join my best friend and her parents and Grandpa for Thanksgiving, as we have for many years. As grace is said before dinner, I will fully be grateful to be there. I will thank the Lord for giving me this life and all the wonder that has come with it. I have never been as thankful and grateful before in my life.
To you, my family and friends, and readers as well, Happy Thanksgiving. Embrace it, feel it, live it.
It is so easy and so natural to focus on our hardships and what we feel we need. Sometimes, I am so caught up on all that I have lost or feel like I am losing that I forget to see what I have and have had.
Tomorrow my family will join my best friend and her parents and Grandpa for Thanksgiving, as we have for many years. As grace is said before dinner, I will fully be grateful to be there. I will thank the Lord for giving me this life and all the wonder that has come with it. I have never been as thankful and grateful before in my life.
To you, my family and friends, and readers as well, Happy Thanksgiving. Embrace it, feel it, live it.
Monday, November 24, 2008
Some Cool Things
I thought I might write about a few other cool things that have happened lately. As most of you know, I rarely get out of the house, unless it involves some kind of medical activity. So when new things happen, I get excited!
John Paul's school, All Saints, held their annual Snowlflake Gala fundraiser. It was so fun to get dressed up, actually wear make-up, and go! It was good to see many of the parents that I miss so much by not being able to drive John Paul to school. But the event itself was beautiful. We didn't get to stay very long but it was great to be there at all. Congrats to all who worked so hard on the event. I hear that the auction was very successful.
Another fascinating thing that I have been peripherally a part of is my friend Belinda father's journey with deep brain stimulation surgery. He has suffered from Parkisnsons for years and was brave enough to take this big step. It is inspiring to realize the advances that are continually being made in science and medicine.
The "A Little From A Lot" fundraising campaign continues to grow. It is absolutely amazing! If you have a minute, scroll down the list of donors. I have been blessed by so many and from all around the country, and beyond! Thank you to all of you who have helped by donating, by passing along my message to others, by praying for me. It ALL matters.
Last Friday night a fine jewelry show, featuring Terese Designs, was hosted as a fundraiser for my campaign. Not only was it a fun event, it was also quite successful! Many thanks to Stephanie Perko, Shelley Johnson, and Terese Designs for their work and fun! I am truly sorry I could not be there.
Finally, when I awoke yesterday I found an envelope on my nightstand. It contained a one dollar bill from John Paul. This is why I keep fighting.
A Visit From My Cousin Anne
We recently had a wonderful visit with my cousin, Anne, from Oklahoma. We had reconnected last summer when I was in Norman for my 20th High School Reunion. (Go Tigers '88!) She came for a long weekend and we had a great time together.
It was especially nice that she was able to meet Craig and the boys. Anne was amazing with the kids and it means so much to me that they now know her. And I think that they very much enjoyed their new playmate! Included in their fun together, she braved taking both boys to see the new Madagascar movie and hours at the park.
I suppose it is when we don't know how much time is left in our lives that the concept of family, and extended family, becomes increasingly important. Anne was a very special person in my childhood. And it felt like we seemlessly picked up where we left off.
I must give her special props for enduring the Toys 'R Us tour for the boys to establish their gift wish lists. We both agreed that they must think Santa is immune to the current economic times......
To family, and reconnecting!
Friday, November 21, 2008
From Sally Land, With Love
It's been awhile since I have written or worked on my site. Or answered emails. Or returned phone calls....Partly because I was having a wonderful visit with my cousin, Anne, from Oklahoma. (I will post more on that later as all good things deserve their own space!) I also hadn't written because I wasn't sure what to say, if I wanted to share it yet, and how to put it all together to even write it. So here goes.
I am done with all treatment options other than a bone marrow transplant. As I write, I await a call from Fred Hutch to schedule me to come on over.
I am terrified. I am terrified of going through the transplant as well as what it will do to my family. I am beyond terrified that I will leave for Seattle and not come back alive. I can barely even look at my family as I feel so guilty that this happening not only to me but to them.
I just updated the fundraising thermometer. Isn't it amazing! It is hard to believe that with all the financial effort of so many people (I haven't updated the donor list yet) that money can still be the difference between transplant or no transplant. Life or death.
Yesterday in the oncologist's office, as I tried to negotiate away the leukemia and the transplant, which by the way, did not work, I cried because I am in this position and stuck. I asked the doctor, through my very pretty tears, how in the hell I am going to pay for this. Her response is that somehow these things usually work out. I want to believe that, I really do. I just don't understand how.
I am told now the insurance company transplant person will get involved. Perhaps that person has the magic wand for changing what they will cover.
I left a message yesterday for the Social Security Disability case worker letting them know that hopefully I am now sick enough to qualify.
Okay, now I am getting nasty. So I will stop. When I have come out of the "hide under the covers and maybe it will go away" stage, I will get my site updated. But I wanted you all to know what was going on. And I mean it, thank you for being on my team.
I am told that things are in the works with media outlets. So maybe you will see me soon. Yes, I will haul myself out of bed and take a shower first.
And yes, I will be seeing a member of my behavioral health team today.
And yes, it really sucks.
From Sally Land, with love.
I am done with all treatment options other than a bone marrow transplant. As I write, I await a call from Fred Hutch to schedule me to come on over.
I am terrified. I am terrified of going through the transplant as well as what it will do to my family. I am beyond terrified that I will leave for Seattle and not come back alive. I can barely even look at my family as I feel so guilty that this happening not only to me but to them.
I just updated the fundraising thermometer. Isn't it amazing! It is hard to believe that with all the financial effort of so many people (I haven't updated the donor list yet) that money can still be the difference between transplant or no transplant. Life or death.
Yesterday in the oncologist's office, as I tried to negotiate away the leukemia and the transplant, which by the way, did not work, I cried because I am in this position and stuck. I asked the doctor, through my very pretty tears, how in the hell I am going to pay for this. Her response is that somehow these things usually work out. I want to believe that, I really do. I just don't understand how.
I am told now the insurance company transplant person will get involved. Perhaps that person has the magic wand for changing what they will cover.
I left a message yesterday for the Social Security Disability case worker letting them know that hopefully I am now sick enough to qualify.
Okay, now I am getting nasty. So I will stop. When I have come out of the "hide under the covers and maybe it will go away" stage, I will get my site updated. But I wanted you all to know what was going on. And I mean it, thank you for being on my team.
I am told that things are in the works with media outlets. So maybe you will see me soon. Yes, I will haul myself out of bed and take a shower first.
And yes, I will be seeing a member of my behavioral health team today.
And yes, it really sucks.
From Sally Land, with love.
Friday, November 14, 2008
Visits and Some Fun
A couple of weeks ago, I was fortunate to have my Mom and my Godmother visit. Not only was it helpful having them here, it was also a lot of fun. Especially since I am fairly trapped in my house, I really enjoyed the company.
Tonight my cousin Anne (from Norman, OK) arrives for a long weekend visit. I had the opportunity to reconnect with her when I was in Norman in June for my 20th High School Reunion. She has never met Craig or my boys. I am really looking forward to having her here.
Tonight is also the annual All Saints Auction. Craig and I will be going for a couple of hours, until it is time to pick up Anne at the airport and I have way run out of steam. But it will be fun to wear something other than sweats and jeans and to see so many of the parents I so miss because I can't drive John Paul to school.
A couple of days ago, my friend Paul came over for a visit. I hadn't seen him in quite some time. I'll post a couple of pics. I worked with him years ago and I remain very fond of him.
Seattle Housing Issues-Answers to Your Questions
I have had many questions about what the deal is about having to stay in Seattle for approximately four months if I do get the transplant. I have even had very kind offers to help with housing issues.
Unfortunately, until I have the money for the transplant and then have dates for my transplant, there is little I can do to work on this aspect right now. There are many options available through the Housing Information Packet I received from Fred Hutch. There are furnished apartments, long term stay hotels, hotels with suites, and even private apartments which are offerred at reduced rates to Fred Hutch patients. But since I don't know dates, I have backburnered this whole thing. Obviously, it is too soon to work on it because they wouldn't know their availability until I know when I would be there.
The essential requirement regarding Seattle housing is that it must be within 15 minutes, including traffic, to both Fred Hutch and the UW Hospital.
The only other "requirement" is that it must be able to accomodate both me and my caregiver. It would be preferable if whoever my caregiver is (That is an entirely different obstacle I must deal with when it's time) that they could have his/her own bed. Since Craig will not be able to come with me and because I will be pretty sick while I am recovering, separate sleeping spaces would be ideal.
Thank you to all of you who have offered help with this obstacle. But until I have dates, there is really no way for me to start making plans. I'll keep you posted!
Unfortunately, until I have the money for the transplant and then have dates for my transplant, there is little I can do to work on this aspect right now. There are many options available through the Housing Information Packet I received from Fred Hutch. There are furnished apartments, long term stay hotels, hotels with suites, and even private apartments which are offerred at reduced rates to Fred Hutch patients. But since I don't know dates, I have backburnered this whole thing. Obviously, it is too soon to work on it because they wouldn't know their availability until I know when I would be there.
The essential requirement regarding Seattle housing is that it must be within 15 minutes, including traffic, to both Fred Hutch and the UW Hospital.
The only other "requirement" is that it must be able to accomodate both me and my caregiver. It would be preferable if whoever my caregiver is (That is an entirely different obstacle I must deal with when it's time) that they could have his/her own bed. Since Craig will not be able to come with me and because I will be pretty sick while I am recovering, separate sleeping spaces would be ideal.
Thank you to all of you who have offered help with this obstacle. But until I have dates, there is really no way for me to start making plans. I'll keep you posted!
No, I am Not A Virus!
The great news is that my message is spreading throught the country. So many of you have passed my message along to your email distribution lists and my A Little From A Lot campaign has been introduced to a countless number of people. The funny part is that some poeple have thought it was one of those school projects that sometimes circulate. And a number of people have contaced the people who have sent them my message because they thought they had received a virus.
I would say that it shows several things. One, that my message is spreading far and wide. Two, alot of people are working on my behalf. And three, now I understand a little bit more about how real viruses happen.
Please keep up the good work. If it wasn't working, I wouldn't even have my clain to fame as a virus!
I would say that it shows several things. One, that my message is spreading far and wide. Two, alot of people are working on my behalf. And three, now I understand a little bit more about how real viruses happen.
Please keep up the good work. If it wasn't working, I wouldn't even have my clain to fame as a virus!
My Leukemia Mentor
It's time to write some fun stuff!
I have been matched with a "mentor" through the Leukemia & Lymphoma Society. They have a program called First Connection where they will match a person who has been through all of this. My mentor lives in Ontario, Canada. We finally "met" by phone. She was very inspiring to me. She was able to answer many of the questions I had that I wanted a patient's perspective on, not just how a doctor describes things. She had her bone marrow transplant in 2004. She told me her life is back to normal, despite a long and tough road getting there. But it was very helpful to talk with someone who has been through all of this.
She did tell me something I didn't know and had never even thought about. Once a person gets through a bone marrow transplant, the patient has to get all their childhood immunizations again. Because the chemo and radiation to prepare for the transplant completely destroys your old immune system, it's like being a baby with a new immune system. Weird, huh? Who knew?
I have been matched with a "mentor" through the Leukemia & Lymphoma Society. They have a program called First Connection where they will match a person who has been through all of this. My mentor lives in Ontario, Canada. We finally "met" by phone. She was very inspiring to me. She was able to answer many of the questions I had that I wanted a patient's perspective on, not just how a doctor describes things. She had her bone marrow transplant in 2004. She told me her life is back to normal, despite a long and tough road getting there. But it was very helpful to talk with someone who has been through all of this.
She did tell me something I didn't know and had never even thought about. Once a person gets through a bone marrow transplant, the patient has to get all their childhood immunizations again. Because the chemo and radiation to prepare for the transplant completely destroys your old immune system, it's like being a baby with a new immune system. Weird, huh? Who knew?
Administration of My Blog-Your Questions Answered
A number of people have asked who manages my blog, from who writes the posts, to who enters the donor names, and who updates the fundraising progress thermometer. It's all me. So please forgive me if it takes some time to get things updated. It is not a lack of appreciation but the simple logistics of doing it myself. Some days just aren't as good as others for me.
Please also know that there is a lag between when donations are received and my receiving the information. When checks are received by the bank, they mail me the information regarding who the donations are from. So it takes a few days before I receive that information. So the progress thermometer reflects the balance I see by checking the Benefit Account account balance online.
Likewise, when someone donates via PayPal, I must then request a transfer of those funds into the Benefit Account. It doesn't just go automatically.
A few people have worried that perhaps their donation was not received because their donation hasn't been posted on the list of donors. I have found that they do get deposited but it just takes some time for the bank to notify me. I also wait for a few deposits to accumualte in the PayPal account before transferring the balance. So this also delays by a few days what the thermometer accurately reflects.
The good news is that donations are still coming in!
Please also know that there is a lag between when donations are received and my receiving the information. When checks are received by the bank, they mail me the information regarding who the donations are from. So it takes a few days before I receive that information. So the progress thermometer reflects the balance I see by checking the Benefit Account account balance online.
Likewise, when someone donates via PayPal, I must then request a transfer of those funds into the Benefit Account. It doesn't just go automatically.
A few people have worried that perhaps their donation was not received because their donation hasn't been posted on the list of donors. I have found that they do get deposited but it just takes some time for the bank to notify me. I also wait for a few deposits to accumualte in the PayPal account before transferring the balance. So this also delays by a few days what the thermometer accurately reflects.
The good news is that donations are still coming in!
New Medical Info
It's been a bit since I last posted. It's been a hard ten days or so, physically and mentally. I had partly waited to write anything new because I had hoped to have better news since the last time I wrote. It's taken some healing in several ways to be ready to talk about it.
As you may remember, I started one of the two second-line chemo drugs and that resulted in another stay at the hospital. When I went to my own oncologist after that, we decided to give a try on the third and last chemo drug. It took awhile for it to get to the pharmacy. It's cost is $6,795 per month. (Thank goodness I only had to pay $40 for it whith my health insurance prescription coverage.) For obvious reasons it's not kept in stock.
So it took awhile for it to arrive here in Spokane. It came with all kinds of crazy warnings. It even required that the pharmacist read to me a five page hand-out from the drug manufacturer before they would let me leave with it. All the printed information on it starts with "Warning. This drug may cause sudden death." So with trepidation, really for the first time with all of the meds I have taken, I started taking it.
Three doses later I was back in the hospital. I am allergic to some part of the drug. It wasn't side effects but a true allergic reaction. So no more of that medicine.
We met again with my oncologist yesterday. I sat there with tears in my eyes, trying to bargain some way I could keep taking any of the three chemo meds. My doctor really didn't think that it would work, particularly because all three have put me in the hospital and I wasn't even at the dosage level high enough to be effective. Another try could likely result in even stronger side effects from the first two and an even worse allergic reaction to the third. She is however contacting the head of pharmacy in Seattle to find out if there is any way it would be worth trying again. But the last one is not an option at all because of the acute allergic reaction I had.
The next step, the only step left, is likely the transplant. But hopefully we can figure out some sort of timebuyer as I continue to fundraise and continue applying for every grant possible. But my heart is broken that I can't take any of the drugs. It is hard to accept that I have failed each of them.
I am so incredibly disappointed. I am so incredibly sad. And I am really, really afraid. I am still overwhelmed that all of this is happening. I plan on giving myself a few days to mourn this and then rally up and press on.
Monday, November 10, 2008
One Year Anniversary of My Breast Cancer Diagnosis
Today marks one year since my surgeon called me to tell me that my biopsy had come back with cancer. I don't really have much to say about it other than it is a huge day, but it passed much like any other. And here I am. A double mastectomy, a surgery for complications from the double mastectomy, a total hysterectomy, a surgery due to complications from the hysterectomy, six rounds of chemo, a bone marrow biopsy, a diagnosis of Leukemia, two failed chemo trials and several hospitalizations later. I'm still here.
I'm tired. But I am still here!
I'm tired. But I am still here!
Sunday, November 9, 2008
Fundraising News
I could never have known how all of you would respond to my "A Little From A Lot" fundraising campaign. So many of you have contributed. So many of you have passed my message along to your own email distribution lists and to groups or organizations in which you belong. My message is literally circling this country, sometimes even the same person twice from different sources. Thank you for doing this for me.
Not only is money being raised, it has given me several opportunities to reconnect with people whith whom I had essentially fallen out of touch with. I have also received many notes of encoragement both sent directly to me and from notes included in donation envelopes mailed to the bank. I have met many new people who you have brought into my life. Several people who have specific knowledge in fields related to my battle have reached out to me to offer their input and ideas. So the results far surpass fundraising alone.
But it is incredible! The way people, family, friends, and strangers have stood up to actively support me in reaching the monetary requirements to get the transplant. I have received donations from $2 to $10,000. Are you amazed? I am.
The generosity of others has inspired me and definitely renewed my belief that this all may be possible. Thank you, again.
Donations are coming from around the country and even one from Europe. How cool is that?!
My highschool class, The Norman Tigers of '88, received an email of my sitauation and many have reached out to help. How cool is that, especially after what a snob I was?!
I even received a donation from a man who I don't know who he himself awaits a liver transplant. He also took the time to write a note to empathize with my battle with Disability. He too was denied and denied but after hiring an attorney finally was approved.
I have had the offer of a very sizeable loan in the event that it would make a difference. It blows my mind that someone who I don't even know would be willing to offer something of that magnitude.
I have had several offers of potential housing solutions for my stay in Seattle.(I will write more on this topic later.)
I think sometimes we see so much of the not-so-great in the world that we forget about all the good. I can tell you first hand that there remains a great deal of good in this world. I am lucky to have this unique view of it.
Not only is money being raised, it has given me several opportunities to reconnect with people whith whom I had essentially fallen out of touch with. I have also received many notes of encoragement both sent directly to me and from notes included in donation envelopes mailed to the bank. I have met many new people who you have brought into my life. Several people who have specific knowledge in fields related to my battle have reached out to me to offer their input and ideas. So the results far surpass fundraising alone.
But it is incredible! The way people, family, friends, and strangers have stood up to actively support me in reaching the monetary requirements to get the transplant. I have received donations from $2 to $10,000. Are you amazed? I am.
The generosity of others has inspired me and definitely renewed my belief that this all may be possible. Thank you, again.
Donations are coming from around the country and even one from Europe. How cool is that?!
My highschool class, The Norman Tigers of '88, received an email of my sitauation and many have reached out to help. How cool is that, especially after what a snob I was?!
I even received a donation from a man who I don't know who he himself awaits a liver transplant. He also took the time to write a note to empathize with my battle with Disability. He too was denied and denied but after hiring an attorney finally was approved.
I have had the offer of a very sizeable loan in the event that it would make a difference. It blows my mind that someone who I don't even know would be willing to offer something of that magnitude.
I have had several offers of potential housing solutions for my stay in Seattle.(I will write more on this topic later.)
I think sometimes we see so much of the not-so-great in the world that we forget about all the good. I can tell you first hand that there remains a great deal of good in this world. I am lucky to have this unique view of it.
The Latest Medical News
Hooray! I am off the oxygen! Mt sats are good enough and that's all I needed to hear. But all the equipment and tanks will remain in the event that I need them again. I have to admit it seemed strange to me that I would need it all so urgently and then in short time not need it at all. I will add that to my ever-growing list of weird things.
My regular oncologist, along with my transplant doctor, and Craig and I have decided to give a final last try on the final last chemo available. It is a newly approved drug, not long out of clinical trials and government approval. While there is little optimism that I will tolerate it, it could happen. Regardless it is important to do whatever can be done to keep my counts in a reasonable range. And we never want to look back and wonder "what if".
It has been on order and should be in soon. Like the others, with the cost of approximately $4,000 per month, no one keeps it in stock. Hopefully it will be in tomorrow and we will give it a go. It's an odd mental place to be in to know you have to try, you have to hope, but that there is a good likelihood that it will make me very sick and possibly result in another Sacred Heart vacation. But I have to try.
I am learning more about the range that one's counts must be in to be deemed a good investment by the health insuarnce company and also about how what range your counts are in affect the outcome of the transplant. So pretty much whatever I have to do to keep within those I will need to do.
I had my consultative exam last week for Social Security Disability. Unbelievable. And it's our tax dollars at work! Of an hour and a half appointment, I would say a third went to me completing forms and questionnaires. It seems like I could have completed them in advance and brought them with me. I'd say another third of the time was spent with me talking about how my illness has affected me emotionally, by answering his questions. The other third was spent by him telling me about himself, his education, his work at NIH, how big of a Nebraska fan is, his wfe's battle with breast cancer. The other half was my answering strange questions such as "Who is the President?" I literally asked him if he was kidding. I really thought he was.
I couldn't begin to guess if I did well in the sense of his exam results supporting my claim for disability benefits. So now we wait, again, for the decision to my appeal.
My regular oncologist, along with my transplant doctor, and Craig and I have decided to give a final last try on the final last chemo available. It is a newly approved drug, not long out of clinical trials and government approval. While there is little optimism that I will tolerate it, it could happen. Regardless it is important to do whatever can be done to keep my counts in a reasonable range. And we never want to look back and wonder "what if".
It has been on order and should be in soon. Like the others, with the cost of approximately $4,000 per month, no one keeps it in stock. Hopefully it will be in tomorrow and we will give it a go. It's an odd mental place to be in to know you have to try, you have to hope, but that there is a good likelihood that it will make me very sick and possibly result in another Sacred Heart vacation. But I have to try.
I am learning more about the range that one's counts must be in to be deemed a good investment by the health insuarnce company and also about how what range your counts are in affect the outcome of the transplant. So pretty much whatever I have to do to keep within those I will need to do.
I had my consultative exam last week for Social Security Disability. Unbelievable. And it's our tax dollars at work! Of an hour and a half appointment, I would say a third went to me completing forms and questionnaires. It seems like I could have completed them in advance and brought them with me. I'd say another third of the time was spent with me talking about how my illness has affected me emotionally, by answering his questions. The other third was spent by him telling me about himself, his education, his work at NIH, how big of a Nebraska fan is, his wfe's battle with breast cancer. The other half was my answering strange questions such as "Who is the President?" I literally asked him if he was kidding. I really thought he was.
I couldn't begin to guess if I did well in the sense of his exam results supporting my claim for disability benefits. So now we wait, again, for the decision to my appeal.
The Robertson Family Update
I'm a bit behind in posting, as much has been going on. There has been the recouperation from the failed chemo and a stomach bug (Yes, I actually had a normal medical problem.) that have kept me running slow. I have a couple of things to talk about so I'll use a couple of separate posts.
Our family recently enjoyed the company of both my Mom and my Godmother, Denise. They arrived the same day, with my Mom staying five days and my Godmother for ten. It went far too fast! First off, I want to share with you my pride in my mother traveling alone. It was a scary endeavor and I am so grateful that she was so motivated to do it. Because of her health and mine, I am particularly grateful for every minute with her. Denise has been my Mom's best friend from long before I was born. So the three of us getting to have that time together was important to us all.
Of course, both came bearing gifts for the boys. And my Mommy bought me a pair of Uggs. I had coveted them for so long and at last, they are mine. Craig was secretly hoping for Guitar Hero but it wasn't meant to be... Denise also brought me a terrific new lounge outfit. As you can imagine, this is my predominant wardrobe right now.
We were spoiled by the yummy lunches out and the homecooked meals in the evening. And their help with taking care of me and the boys gave Craig some much needed and deserved time off. For me, one of the best parts was just to have company, escpecially adult company. Sometimes I feel like I live in isolation.
They were here to enjoy the boys dressing up for a neighbor's Halloween Party. The Spiderman mask of Brennan's costume was way to small. Even after cutting the eye slots much larger, it still smooshed his eyes. So they watch as non-artistic me drew it on his face (Yes, with washable marker). They also particpated in pumpkin carving, the same way I did, by watching from the table as Craig, Jenny, John Paul, and Brennan did the work. Big kudos to Jenny who was stuck working on Brennan's, consisting of many circular parts.
The kids had also had a special date with Kathy Jones, our dear friend and Craig's coworker. She picked them up for a day at Greenbluff and searching for the perfect pumpkins. They were some rather unique ones that they brough home.
Denise and Craig took the boys trick-or-treating. Boy did they make out! Craig is set for awhile.
It was hard to say goodbye to both of them. I have been very lucky in life to have a loving mother, who has amazing stregth and determination, and a strong life-long realtionship with my Godmother, a very loving and kind woman herself.
I am including some pictures. These were happy days.
Tuesday, November 4, 2008
What The Boys Know-Some Answers to Your Questions
Many of you have inquired about how John Paul and Brennan are doing through all of this. My immediate answer is remarkably well. I am so proud of both of them, of who they are and how they handle their worlds. But I would also have to be truthful in saying that they both are struggling to make sense of it all.
Many of you know that John Paul, turning six in December, is incredibly in tune with his surroundings. Before school started, I had a brief conversation with him. Most importantly, I did not want him to learn that I had cancer again from a classmate, teacher, or parent. Clearly he would know, as well as others at school, that things are different in our family. I can't drive him to school. (Thank you again Steph!) We also are sending a month's supply of snacks at a time, rather than two each day in his backpack. Because we can't be certain each day where I will be, I want to make sure he never goes without. He is also participating in hot lunch, rather than sending him to school with a prepared meal. I feel an almost compulsive need to make sure that these types of things are taken care of. But to him, he may just notice that things are a bit different than some of his peers.
Anyways, I just explained that like when Mommy had cancer in her "boobs" and had to go through some things in order to get better, it is like that again, but in my blood. After reiterating to him that he can't catch these cancer germs, he was off to play football. I suppose it has gone more smoothly this time in the sense that he hasn't gone around announcing (at least that I know of....) to anyone and everyone that I don't have any boobs and that I don't have any hair because of chemo.
I have tried to gently bring the topic up on several occasions but he does not seem interested in talking about it. I have tried reading with him some age-appropriate books for children whose parents are battling cancer. No interest there, either.
But of course, we can see his own frustrations and fears as they surface in other behaviors. We have been reassured that this is very normal. But it just pisses me off that this has to be his normal.
Brennan, for the most part, is not ready to understand the concept of cancer. He, like John Paul, knows I am "sick" and need to rest alot. Brennan asks me almost every day if I am better yet. It is with a broken heart that I tell him "a little bit every day".
They have dealt with countless doctor visits, surgeries, procedures, drug therapies, and hospital visits. Both seem to accept the part they understand as just part of our world. In many ways I am grateful that they do not understand the odds I am fighting.
Brennan seems to allow his feelings out by being even more honery and really has pushed being defiant. Craig and I often have to balance what is normal for a three year old versus what is a result of his confusion with his world.
In summary, we have explained to our boys that Mommy is sick and that we are doing everything possible to make Mommy better. We have not discussed the transplant with them because unless I succeed in raising the money, there won't be one. So I'll cross that bridge when I come to it. Likewise, we have not discussed the possibility of me dying. They are too young to be forced to deal with that, at least until the day I run out of options.
I appreciate all the things that so many of you have done to help Brennan and John Paul through all of this. It helps me to know how loved they are.
Many of you know that John Paul, turning six in December, is incredibly in tune with his surroundings. Before school started, I had a brief conversation with him. Most importantly, I did not want him to learn that I had cancer again from a classmate, teacher, or parent. Clearly he would know, as well as others at school, that things are different in our family. I can't drive him to school. (Thank you again Steph!) We also are sending a month's supply of snacks at a time, rather than two each day in his backpack. Because we can't be certain each day where I will be, I want to make sure he never goes without. He is also participating in hot lunch, rather than sending him to school with a prepared meal. I feel an almost compulsive need to make sure that these types of things are taken care of. But to him, he may just notice that things are a bit different than some of his peers.
Anyways, I just explained that like when Mommy had cancer in her "boobs" and had to go through some things in order to get better, it is like that again, but in my blood. After reiterating to him that he can't catch these cancer germs, he was off to play football. I suppose it has gone more smoothly this time in the sense that he hasn't gone around announcing (at least that I know of....) to anyone and everyone that I don't have any boobs and that I don't have any hair because of chemo.
I have tried to gently bring the topic up on several occasions but he does not seem interested in talking about it. I have tried reading with him some age-appropriate books for children whose parents are battling cancer. No interest there, either.
But of course, we can see his own frustrations and fears as they surface in other behaviors. We have been reassured that this is very normal. But it just pisses me off that this has to be his normal.
Brennan, for the most part, is not ready to understand the concept of cancer. He, like John Paul, knows I am "sick" and need to rest alot. Brennan asks me almost every day if I am better yet. It is with a broken heart that I tell him "a little bit every day".
They have dealt with countless doctor visits, surgeries, procedures, drug therapies, and hospital visits. Both seem to accept the part they understand as just part of our world. In many ways I am grateful that they do not understand the odds I am fighting.
Brennan seems to allow his feelings out by being even more honery and really has pushed being defiant. Craig and I often have to balance what is normal for a three year old versus what is a result of his confusion with his world.
In summary, we have explained to our boys that Mommy is sick and that we are doing everything possible to make Mommy better. We have not discussed the transplant with them because unless I succeed in raising the money, there won't be one. So I'll cross that bridge when I come to it. Likewise, we have not discussed the possibility of me dying. They are too young to be forced to deal with that, at least until the day I run out of options.
I appreciate all the things that so many of you have done to help Brennan and John Paul through all of this. It helps me to know how loved they are.
Monday, November 3, 2008
Financial Resources-Some Answers to Your Questions
Some of you have been kind enough to suggest different avenues to pursue to seek financial resources. And many of you have asked if I have already tried other methods, ie. already established resources, to gain financial assistance. So I thought I would write a little about the avenues that I know of. But PLEASE continue to pass along any and all suggestions. Anything and everything helps!
First of all, I do have a great number of different organization websites, phone numbers, and names that I am contacting. Needless to say, it takes time to do this. If anyone wants to volunteer to help, just let me know!
Anyways, I am aware of many out there that have programs that can help. For example, there are is a travel reimbursement program, up to $500 per year. However it covers mileage reimbursement and airfare only. There is also a copay assistance program, where one can submit receipts for reimbursement. I am already participating in them. One does have to pay out-of-pocket first and then be reimbursed.
Some other programs are income-based, which we miss by a small margin. Other we miss by more. Sadly, we have talked about the benefits of getting divorced simply so I would qualify. But by this route I would also lose my health insurance and become very limited by the doctors I could see due to being on state and federal medical. Plus I could no longer live with my family to qualify for benefits as a single person.
I have many, many other programs to inquire about and some I already know to apply for. There are small grants available in some situations and I am hopeful to be able to tap into some. But the big picture, to the best of my knowledge, is that there is nowhere to access "big" money to close my gap. But rest assured that I will contact and research every last lead.
I am seeing, to my amazement, an incredible grass roots effort take place. Many of you have passed along my story and message to your distribution lists and groups in which you are involved. Thank you for accepting my challenge to do so. IT IS WORKING!
First of all, I do have a great number of different organization websites, phone numbers, and names that I am contacting. Needless to say, it takes time to do this. If anyone wants to volunteer to help, just let me know!
Anyways, I am aware of many out there that have programs that can help. For example, there are is a travel reimbursement program, up to $500 per year. However it covers mileage reimbursement and airfare only. There is also a copay assistance program, where one can submit receipts for reimbursement. I am already participating in them. One does have to pay out-of-pocket first and then be reimbursed.
Some other programs are income-based, which we miss by a small margin. Other we miss by more. Sadly, we have talked about the benefits of getting divorced simply so I would qualify. But by this route I would also lose my health insurance and become very limited by the doctors I could see due to being on state and federal medical. Plus I could no longer live with my family to qualify for benefits as a single person.
I have many, many other programs to inquire about and some I already know to apply for. There are small grants available in some situations and I am hopeful to be able to tap into some. But the big picture, to the best of my knowledge, is that there is nowhere to access "big" money to close my gap. But rest assured that I will contact and research every last lead.
I am seeing, to my amazement, an incredible grass roots effort take place. Many of you have passed along my story and message to your distribution lists and groups in which you are involved. Thank you for accepting my challenge to do so. IT IS WORKING!
No More Chemo
Well, it's another restless night. I sleep in little spurts but never much at any one time. It's been awhile since I have written and much to say. It's been a busy time with my Mom and Godmother visiting, Halloween, and other going-ons. I will post later about all these good and fun things and include a pic or two. I also need to update the fundraising thermometer and tell you all about the many amazing things going on in that area. But good news deserves its own space.
I was recently hospitalized due to side-effects of the new chemo. I experienced severe swelling, which had it been left untreated, could have progressed to heart failure. So I am off the chemo and have been told that my only option left is the bone marrow transplant.
I declined the invitation to stay in the hospital and am trying to manage at home. I am now on oxygen 24/7 as there is not enough room in my blood due to it being congested by unhealthy cells (as a result of the leukemia) to allow enough oxygen to circulate to my organs. The cord to the machine is 50 feet long so I can pretty much get everwhere upstairs with it in. Then I have canisters in this neat jazzy carrying case for when I leave the house. And like the scarlet letter, I have a sign on my front door warning that oxygen is in use. Very cool and hip am I. It does seem to make me feel better and is doing wonders for my headaches. Who knew my head hurt so bad because it didn't have enough oxygen?!
I am taking diuretics to continue ridding my body of the excess fluid from the swelling. And potassium because it was already low and diuretics cause it to go lower. As many of you know, low potassium can lead to heart problems as well.
My thinking is that if I can figure out how to do this at home, that is my preference. But I did get a direct pass back into the hospital should I need it. I liken it to being a VIP.
My heart simply broke when the doctors told me that the medicines were over and that my only choice, and as soon as possible, is the transplant. I don't know exactly how to explain how I feel. Just sad and heartbroken. And scared.
I will try to see my regular oncologist today and see what she says. Just in case she has a secret miracle drug or button somewhere.
I am running out of time. And I am not done yet. I just want it all to go away.
I was recently hospitalized due to side-effects of the new chemo. I experienced severe swelling, which had it been left untreated, could have progressed to heart failure. So I am off the chemo and have been told that my only option left is the bone marrow transplant.
I declined the invitation to stay in the hospital and am trying to manage at home. I am now on oxygen 24/7 as there is not enough room in my blood due to it being congested by unhealthy cells (as a result of the leukemia) to allow enough oxygen to circulate to my organs. The cord to the machine is 50 feet long so I can pretty much get everwhere upstairs with it in. Then I have canisters in this neat jazzy carrying case for when I leave the house. And like the scarlet letter, I have a sign on my front door warning that oxygen is in use. Very cool and hip am I. It does seem to make me feel better and is doing wonders for my headaches. Who knew my head hurt so bad because it didn't have enough oxygen?!
I am taking diuretics to continue ridding my body of the excess fluid from the swelling. And potassium because it was already low and diuretics cause it to go lower. As many of you know, low potassium can lead to heart problems as well.
My thinking is that if I can figure out how to do this at home, that is my preference. But I did get a direct pass back into the hospital should I need it. I liken it to being a VIP.
My heart simply broke when the doctors told me that the medicines were over and that my only choice, and as soon as possible, is the transplant. I don't know exactly how to explain how I feel. Just sad and heartbroken. And scared.
I will try to see my regular oncologist today and see what she says. Just in case she has a secret miracle drug or button somewhere.
I am running out of time. And I am not done yet. I just want it all to go away.
Tuesday, October 28, 2008
A Little from a Lot Campaign Update
Watch it go!!! It's working! As I write, the Sally Robertson Benefit Fund totals over $19,000. And I have more donations to deposit today. THANK YOU to everyone who has already contributed. I am in awe of the generosity and support I am receiving. In addition to those of you who have donated, many more have pledged. And many of you have forwarded my message on to your own email distribution lists. I have received many contributions from people who I don't know personally, but you, my family and friends, have brought into my world. Thank you for helping me build my team and my future.
I have learned that I won't always know who the individuals are who mail checks to the bank or make cash deposits into my fund. So those of you who I haven't been able to personally thank, THANK YOU!
I am really starting to believe that $1 at a time, my goal of $210,000 is really possible. While my heart still breaks at having to ask for help, I have gained exponentially by knowing, really knowing, that people care. And not just people who know me personally. But people who once made aware of my situation and the gap between what insurance covers and what a transplant actually costs, are willing to help a stranger close that gap. Incredible.
I have learned that I won't always know who the individuals are who mail checks to the bank or make cash deposits into my fund. So those of you who I haven't been able to personally thank, THANK YOU!
I am really starting to believe that $1 at a time, my goal of $210,000 is really possible. While my heart still breaks at having to ask for help, I have gained exponentially by knowing, really knowing, that people care. And not just people who know me personally. But people who once made aware of my situation and the gap between what insurance covers and what a transplant actually costs, are willing to help a stranger close that gap. Incredible.
Wednesday, October 22, 2008
A Little From A Lot Campaign Roll-Out!
Admit it. You knew it was coming. Many of you had already asked me about it. Yes, I am asking you to help me. Financially.
I need to raise a minimum of $210,000 in order to receive a bone marrow transplant. I will have to write a check for $179,000 to cover the portion of the transplant that my health insurance does not cover. I will need approximately $30,000 for living expenses and out-of-pocket medical costs during a four to five month stay in Seattle. There will also be numerous additional medical expenses as my deductible, co-insurance, and max-out-of-pocket begins in the new year and a whole new prescription regime becomes the norm.
I am asking you, my friends and family, to donate. I am asking you for $1. If you are able to give more, please do.
It would take less than everyone in Spokane giving me $1 each to raise the money I need. So after great thought, I came up with the "A Little From A Lot" campaign. I am starting with you first. Please donate "a little". Whatever is comfortable. But I will do whatever it takes, one dollar at a time, to raise this money. And I have some pretty creative ideas!
I am unable to get a tax-exempt status because I am fundraising, at this point, only for me. I have been told, however, that a person may make a once a year tax-deductible gift to another person of up to $10,000. If you are able to give on a large scale, please confirm this information with your accountant before giving.
Checks can be made payable to the Sally Robertson Benefit Fund and mailed directly to the bank, Numerica, 2202 E. 29th Avenue, Spokane, WA 99203.
There is also a Donate button to the right, utilizing Pay Pal. Please note that I am charged a 2.9% plus 30 cent fee per donation. Pay pal deposits the rest directly into the Sally Robertson Benefit Fund.
You can track my success with the fundraising thermometer, also to the right.
Again, I am asking for your help. We simply can't do it alone. Anything and everything helps. I know that times are hard everywhere. People have even less money today than they did a month ago. The holidays are coming. So I am asking you to give what is comfortable, nothing more. At least $1.
You are a part of my new mission, to raise at least $210,000 and to educate others about the shortfalls of health insurance coverage for transplants. I will be contacting local and national media, philanthropic groups, community leaders.....Anyone and everyone I can think of who can help with my campaign and help me deliver my message. If you are part of a group, any group, and feel that its members would be willing to each give $1 to help save a life, I challenge you to take my message to them and ask. I will help you in any way I can, ie. pictures, letters, medical documentation, video, speaking appearance, etc.
Ultimately, after I have had the transplant and recovered, it is my intent to create the A Little From A Lot Foundation. This experience has taught me so much and I intend to take all the help, support, and experience and pay it forward. I plan to help others who face this gap between what health insurance covers and what it actually costs to get a transplant. So any unused funds will go into my Foundation. Should I be unable to obtain a transplant, or not need one, I will gladly refund your money. In the event that I should die between here and success, all funds will go into a trust for my children or will be refunded at the donor's request.
Thank you for being on my team, and Welcome to Sally Land!
I need to raise a minimum of $210,000 in order to receive a bone marrow transplant. I will have to write a check for $179,000 to cover the portion of the transplant that my health insurance does not cover. I will need approximately $30,000 for living expenses and out-of-pocket medical costs during a four to five month stay in Seattle. There will also be numerous additional medical expenses as my deductible, co-insurance, and max-out-of-pocket begins in the new year and a whole new prescription regime becomes the norm.
I am asking you, my friends and family, to donate. I am asking you for $1. If you are able to give more, please do.
It would take less than everyone in Spokane giving me $1 each to raise the money I need. So after great thought, I came up with the "A Little From A Lot" campaign. I am starting with you first. Please donate "a little". Whatever is comfortable. But I will do whatever it takes, one dollar at a time, to raise this money. And I have some pretty creative ideas!
I am unable to get a tax-exempt status because I am fundraising, at this point, only for me. I have been told, however, that a person may make a once a year tax-deductible gift to another person of up to $10,000. If you are able to give on a large scale, please confirm this information with your accountant before giving.
Checks can be made payable to the Sally Robertson Benefit Fund and mailed directly to the bank, Numerica, 2202 E. 29th Avenue, Spokane, WA 99203.
There is also a Donate button to the right, utilizing Pay Pal. Please note that I am charged a 2.9% plus 30 cent fee per donation. Pay pal deposits the rest directly into the Sally Robertson Benefit Fund.
You can track my success with the fundraising thermometer, also to the right.
Again, I am asking for your help. We simply can't do it alone. Anything and everything helps. I know that times are hard everywhere. People have even less money today than they did a month ago. The holidays are coming. So I am asking you to give what is comfortable, nothing more. At least $1.
You are a part of my new mission, to raise at least $210,000 and to educate others about the shortfalls of health insurance coverage for transplants. I will be contacting local and national media, philanthropic groups, community leaders.....Anyone and everyone I can think of who can help with my campaign and help me deliver my message. If you are part of a group, any group, and feel that its members would be willing to each give $1 to help save a life, I challenge you to take my message to them and ask. I will help you in any way I can, ie. pictures, letters, medical documentation, video, speaking appearance, etc.
Ultimately, after I have had the transplant and recovered, it is my intent to create the A Little From A Lot Foundation. This experience has taught me so much and I intend to take all the help, support, and experience and pay it forward. I plan to help others who face this gap between what health insurance covers and what it actually costs to get a transplant. So any unused funds will go into my Foundation. Should I be unable to obtain a transplant, or not need one, I will gladly refund your money. In the event that I should die between here and success, all funds will go into a trust for my children or will be refunded at the donor's request.
Thank you for being on my team, and Welcome to Sally Land!
Tuesday, October 21, 2008
Miscellaneous Sally Update
I got a haircut last week. My first in about a year. (I did have my q-tip look cleaned up once.) I have explained to Craig that I have saved us quite a bit of money on haircuts and styling supplies. Apparently, my savings pale to my net medical expenses....
I've learned a little more about my Social Security Disability status. I got a letter on Saturday stating that I will need to be examined by their doctor(s) before a decision on my appeal can be made. I remain amazed that this is even necessary, but of course will comply. It's odd to think that I apparently must convince their doctor(s) that I really have leukemia and really am sick. I also found out that a person doesn't receive Medicaire until two years after their approved date of eligibility. That's crazy!
Speaking of crazy, I continue to make progress in my behavioral health. I am actually really proud of how far I have come.
I saw the oncologist yesterday. My counts are moving fast, and not in the direction I want. I knew my body was changing. I felt it. My fatigue has turned to complete exhaustion and I am hurting more. So in a way, I was prepared to hear it. On the other hand, I wish it wasn't happening so quickly.
What it means in a practical sense is that I now must try the second-line chemo drugs. As in NOW. Because of their large expense (approximately $4,000 per month), the pharmacies don't stock them and so it has been ordered. It should be in Wednesday or so. Keep your fingers crossed and the prayers going that I will both tolerate it and that it will be effective. It is my last buffer to the transplant.
How do I feel about it? Scared. I also am really, really hoping and willing it to work. It would be a HUGE time-buyer for me, in addition to getting me out of this critical stage.
I am really excited for my Godmother and Mom to come to visit. They both arrive on Friday. Girl time!
I've learned a little more about my Social Security Disability status. I got a letter on Saturday stating that I will need to be examined by their doctor(s) before a decision on my appeal can be made. I remain amazed that this is even necessary, but of course will comply. It's odd to think that I apparently must convince their doctor(s) that I really have leukemia and really am sick. I also found out that a person doesn't receive Medicaire until two years after their approved date of eligibility. That's crazy!
Speaking of crazy, I continue to make progress in my behavioral health. I am actually really proud of how far I have come.
I saw the oncologist yesterday. My counts are moving fast, and not in the direction I want. I knew my body was changing. I felt it. My fatigue has turned to complete exhaustion and I am hurting more. So in a way, I was prepared to hear it. On the other hand, I wish it wasn't happening so quickly.
What it means in a practical sense is that I now must try the second-line chemo drugs. As in NOW. Because of their large expense (approximately $4,000 per month), the pharmacies don't stock them and so it has been ordered. It should be in Wednesday or so. Keep your fingers crossed and the prayers going that I will both tolerate it and that it will be effective. It is my last buffer to the transplant.
How do I feel about it? Scared. I also am really, really hoping and willing it to work. It would be a HUGE time-buyer for me, in addition to getting me out of this critical stage.
I am really excited for my Godmother and Mom to come to visit. They both arrive on Friday. Girl time!
Subscribe to:
Posts (Atom)