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.
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