Transplant Preparations

It's a busy time here with all that needs to be done to get ready to leave for Seattle on February 7 for the transplant. And of course my Type A self feels like it all has to be done today, right now. It's an incredible undertaking trying to get all the ends tied up with SCCA, lodging, transportation, supplies needed, health insurance, my battle with Social Security, caregivers, childcare, house and per sitting, and basically stepping out of my life for months. I've also found that presumable because I have such little control in my life that I need to exert extra control where I can. Does that make sense? My counselor says it's pretty typical. Ah, to be normal!

I'll keep working on posting about topics that I receive questions about. Let me know if there is anything I forget or you want to hear about.

A Special "Thank You" to Rockwood Clinic

As many of you know, Rockwood Clinic, Craig's employer, has been very supportive of our family and circumstances over the past fourteen months, when I was first diagnosed with breast cancer. I would like to thank them here, to tell them how much it has meant. We are ever grateful that Craig works for a company that truly cares about its employees and their families. And while I am unable to discuss the particulars, Rockwood has pledged their support to us over the coming months, enabling Craig to be with me in Seattle during the times when I will really need him.

Thank you.

I would also like to share with you our sorrow for what the CEO of Rockwood, Dr. Kevin Sweeney, and his family are facing. Dr. Sweeney's teenage son is in the final stages of a terminal illness. Dr. Sweeney took a six month leave of absence at the first of the year. I share this with you because Dr. Sweeney has been integral of the support and flexibility given to Craig, even as he juggled his work responsibilities with his private heartbreak of his son's illness. He even has reached out to me directly, to reassure me, to tell me not to worry, that he "had my back". Even as he left for his leave, he made sure his interim replacement would know about our situation and continue to offer to help us in the manner he would have.

That is class. That is integrity. And that is compassion for others even when your own world is caving in.

I only wish that we had some way to support and help him as he has with us.

I would also like to thank everyone at Rockwood Quail Run, Craig's clinic, for all of their support and frankly, tolerance, as my health has yanked around my husband's life and thus theirs. The staff, both medical and non-medical, have had to pick up alot of his responsibilities and duties when he was unavailable to do so. Thank you to each of you.

Please pray for Dr. Sweeney and his family. Wish for peace and grace for them.

Behavioral Health Update

Yes, I am still working on my "behavioral health". I can definitely say I am much "healthier" than I was a few months ago. I have been seeing my counselor usually every other week. I also continue to see the psychiatric nurse, usually each week. Her name is Tammy and she rocks!

I would add her to my list of blessings. She was the critical member of my "behavioral health team" who really helped me pull my head out of my butt. And still does.

Just for thought: When I started going "upstairs", the general reference to the "Behavioral Health" offices on the second floor of the medical facility, I saw an actual shrink, as in M.D. He does an intake, prescribes meds, then has you back for a med check. Interestingly, he is not utilized for therapy. I liked him though, and still appreciate his gentle invitation to stay at the hospital for awhile.

His nurse does what I would consider the counseling, along with other "counselors". So this is how I met Tammy. She and my counselor, Michael, have really helped me, in ways I simply don't know how to explain. I am now a real believer that if a person is ready and wants to do the work, counseling/therapy is worth it. Literally and figuratively.

(I guess I should add my general disclaimer that I only know what I see. There may be alot more going on "Upstairs" than I know. But it intrigues me that while I must pay my co-pay to see my counselor, Michael, Tammy's time apparently does not warrant one.)

Tammy has generously agreed to continue to provide support over the phone while I am in Seattle, and has even offered to be on standby should the boys need any behavioral health help while I am gone. Pretty cool.

All in all, I would say my behavior is much better.

Tuesday, Doctor Day

As many of you may know, my "Doctor Day" changed a few weeks ago from Thursdays to Tuesdays. What this generally consists of is my paying my $30 co-pay to learn that I still have leukemia.

I also get my labs done each week. They also tell me I still have leukemia.

I am certainly not trying to knock my oncologist. There's just no magic left to make this all disappear. Today I asked her if she was sure I still had leukemia. If she was sure there was no way it would just go away. If she was sure there wouldn't be a new miracle drug in the next month. Nope. I'm still going to have a bone marrow transplant.

I was just checking.

My GOOD news is that for the first time, in a very long time, my platelet count is within normal limits. Now that is an accomplishment! This endeavor consisted of the gradual increase of my daily chemo doasge, starting at 500mg/day to now at 2,000mg/day.

Many of you have asked what exactly the chemo is for, if it's not to fight the leukemia. It was to control my run-away platelet counts, a part of the leukemia.

The other GOOD news is that my pain level has dropped as my platelet counts have dropped. Hooray! I like it!!!!

Unfortunately, it seems the higher the chemo dose, the more tired I am. Life seems to consist of energy, fatigue, energy, fatigue, and so on. Sometimes it drives me crazy because the more I sleep, the less I "live". But it's definitely better than the alternative, blood clots.

Benefit Fund Donors and Supporters

It seems like I have written this before, but I am horribly behind on posting donor names and acknowleding donations. I am so sorry and it certainly doesn't mean that it is not appreciated. It is soley a reflection of dwindling energy and time. Thank you to each and every one of you who has supported me financially and emotionally. It has made THE difference in being able to go through this. I often feel like the luckiest person in the world. Yes, it stinks to go through all of this. But how many are blessed with such support?

I am going to start writing, as time, energy, and memory allows, to tell you about some of the really cool stories and tidbits I have acquired along the way. Please feel free to write me about any you have so that I can share them on my blog.

Here are a few for now:

One of my best friends and my high school classmate, Katy Powers, turns out to most likely be a distant cousin of mine on the Seward side.

A 92 year young woman in Los Angeles, Miss Charyl Patterson, has sent a card no less than once a week for months. My Aunt Marjorie is a special friend to her and buys the cards and delivers them to Miss Patterson in her nursing home. I have never met her.

I have been enrolled in Lourdes Prayer League, of Our lady of Lourdes, by Cathy and Bob Stroup. They are the aunt and uncle of the mother of one of John Paul's best buds at school. I have never met them.

A tree was planted in my honor in one of our National Forrests. This gift was from Amy Brown, a friend of my mother-in-law, Belinda Adams. I have never met her.

Santa made an extra and early delivery to the Robertsons. Kenette Wentner helped him with the gifts that wouldn't fit in his sleigh on Christmas Eve.

I have many more stories to tell and look forward to sharing them. But isn't it all pretty amazing?????

Insurance Approval

Today I got another "The Call". At 5:30 pm, I was notified by the Transplant Coordinator at Group Health (Hi Teresa) that my transplant has been officially approved. This is a rather essential part of the process..... And very good news!

Zyprexa

Have you seen or heard about the Zyprexa lawsuit? Apparently the drug's manufacturer has been ordered to pay the largest liability settlement ever within the pharmaceutical industry.

Why do I write about it? It is one of the drugs that is used, off label, for chemo nausea. I took it throughout my chemo for breast cancer. Would have been nice to know that it can make one suicidal.... Just another example of a health care industry far more interested in profit and pushing their drugs than in the actual benefits and risks to its consumers.

We'll add this larger issue to the "To Do List When Recovered". We, as a nation, must deman higher accountability from these drugmakers.

Face Book

So, one night I was looking at Face Book, trying to figure out what it is and how to use it. Apparently, I also invited everyone in my email address book to join..... For those of you who did, thanks! It looks like a fun and easy way to visit with others and reconnect with old friends. For anyone I irritated with my invite, I apologize.

Now that I have admitted that I am not so skilled with this stuff-I've never looked on You Tube or My Space- I will close by saying that I look forward to also keeping in touch on Face Book.....

Transplant Housing

This week has been a flurry of activity, as energy has allowed. One huge part of planning for the transplant has been getting housing arranged for both me and my caregivers while over in Seattle. No small fete, mind you, when trying to cover a four to five month time frame, within a certain radius of both SCCA and the UW Hospital (a requirement). For those of you not familiar with Seattle, that area is smack in the high-rent zone of downtown Seattle.

My first choice, for a number of reasons, is the Pete Gross House. It is a special apartment building on the SCCA campus, designed for patients like me. It is the hub of support systems for patients and caregivers. It also is fully furnished, including linens (no, they didn't know the thread counts) and such. All I need to supply is my own computer (check), my own long distance (check), my own paper products (to do list), my own cleaning supplies (to do list) and my own groceries (to do list). They also have shuttles to the transplant center (and from there, to the hospital) as well as to a local shopping center including Safeway (purchased scrip gift cards this week) and some other stores.

So I am on the list but due to the nature of the beast, an actaul move-in date is impossible to determine. The manager there said that in her three years' experience, the longest that a patient has had to wait after arrival at SCCA is two weeks. So you make alternate short-term housing arrangements until the call comes that an apartment is ready.

I have chosen The Silver Cloid Inn-Lake Union for my first Seattle home. It is essentially on the SCCA campus and offers shuttle service (but is within walking distance) to the Transplant Clinic as well as to downtown. They beat the Marriot's rates (also on the SCCA campus), upgraded my room and don't charge for parking.

In summary, I expect to stay at The Silver Cloud from Febraury 7/8 for the first two to three weeks until my apartment at Pete Gross opens.

I've started adding relevant links to the right regarding "Seattle". I will also be adding contact information for where I will be staying as well as how to reach Craig and I by phone.

I want to thank all of you who have donated to my Benefit Fund for helping make it so much easier to make these housing arrangements. No doubt about it: it's high rent and not covered by health insurance. It's a huge financial hurdle to have overcome. Thank you for helping me make this aspect easier and giving me peace of mind that I will be staying where I should be and where is best for me and my caregivers. I am blessed to even have these choices.

I also want to thank Mia and Darin Davidson for their very generous offer of assistance with housing. Even though the location was outside the required radius, I am ever grateful for the offer.

A Special Hello to My Friends at My Health Insurance Company

I thought I would start today's middle of the night postings with a special "hello" to my followers within the Group Health organization. I've heard that several of you are reading my blog and wanted to officially welcome you to Sally Land.

I guess we will never really "get" each other, as I battle for the best health care and health care coverage while maximizing the benefits I pay for, while you balance the need to provide service for your clients with controlling costs. I guess that puts us in opposite corners in many ways. Many of you have been very helpful to me and I believe you have done the best you can for me within the parameters of your positions and loyalties to your company.

Anyways, I digress. But, welcome. And feel free to add comments to my postings.

It's Transplant Time!

Hurry up and wait. Hurry up and wait. Then, BOOM!

Last Thursday I found out that my donor search had been narrowed down to seven or so 10 of 10 point matches. A couple in the U.S. and the rest in Europe. That was pretty big news, knowing we were getting so close to “The One”.

Last Friday, I got “The Call”. My donor has been identified and it was time to schedule my transplant!

Holy smokes! After knowing it was coming, and waiting and wondering, it is now a reality. My donor is a 44 year old male living in the U.S. I won’t be able to know anything more about him until the one year anniversary of my transplant. But you have to figure he can’t be an ass if he’s in the National Marrow Donor Registry and ready to give part of himself to help save a stranger’s life. I can communicate anonymously for now, and I have already written my first letter. Mr. Wonderful, whoever you are, wherever you are, THANK YOU. You have offered me hope that I can and will beat this disease. (I also have a back-up donor in Europe.)

My Arrival Date, which is what it is actually called, is Tuesday, February 10, 2009, at 11:15 a.m. My start at Registration puts it all in motion. Then bloodwork, medical history review, and clinic orientation. The next day is a huge meeting with my attending. The third day is bone marrow biopsy day (Yuck).

Then, until February 23, my days will consist of a cornucopia of tests and meetings with several departments. From dental to gyn. Pharmacy to finance. Scans and function tests. Social work. The whole gamut to see how messed up I really am, all the way around. The nice part is 1. At least this time I will know what I am dealing with going in and 2. I get evenings and weekends off.

After all my tests are complete and all the data is reviewed, there is a big conference to make final decisions on treatment plans and consent to be given. I am guessing that since no one would ever want to have to do this, it’s a pretty hard signature to write.

On approximately February 25th, my central line will be surgically inserted. Then with a day off to rest and take a huge gulp, “Conditioning” begins. The plan is to remain outpatient February 27 through March 2 during the first phase. Then I will go inpatient to finish the final Conditioning stage through March 5.

The “Big Day” is March 6, 2009, (03-06-09), when my donor’s marrow will be infused into me. This is the day that in transplant world is my new birthday. It will hold milestones and miracles. And it is also Day 1.

The goal of Conditioning is to destroy my body’s ability to make its own blood-making cells. Because of my freaky genetic change, I need to get rid of, as well as prevent further existence of, mine. The hope is that because although it is an unrelated donor, we are matched 10 of 10, and that my body will accept his transplanted marrow and begin to recognize it as my own as well as allow it to continue to make new cells. This is my layperson’s explanation of “Engraftment”. Within Day 7 to Day 30, if it’s going to “take”, it will. A successful engraftment means that my body will slowly begin to make new blood cells on its own.

After a sturdy engraftment, I will go outpatient again until at least Day 100. If everything goes swimmingly, I may be able to come home mid-June.

Wow.

I share with you my awe that my donor is out there, ready to go through some pretty uncomfortable business, to help save a life. I share with you the relief to know that he exists, as well as his buddy in Europe. I share with you the incredible blessing to even have a donor, to even have the resources to get a transplant. I am really, really fortunate.

I also open my breaking heart to you. I am so afraid. I want every last touch, every last look, a longer goodbye…… I just want more. It feels as though I am much on the countdown to death, for it is pretty much where the Conditioning must take me in order to save me. And I know there is another side, whether it’s engraftment or the REAL other side.

I guess what I am trying to say is that it is bittersweet.

I had needed a few days to kind of take it all in before sharing. I’ll soon write more details about living arrangements in Seattle, transportation, childcare arrangements, caregiver arrangements, visitors, arranging to come back home, longterm issues and recuperation, and a million more details that Type A Me feels the need to cover when going on a four to five month adventure. And the unpleasant but significant possibility of the Big Trip with no return. I share this with you to be truthful and thorough on what lies ahead. They do give “Death Window” dates of when things if they are to go horribly wrong, are most likely to do so. That harsh reality is there. I’m thinking if I just keep my eyes closed and duck, I should probably be in pretty good shape.

Cheers to the future! And to Mr. Wonderful!

Happy New Year

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.

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.

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.

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!

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.

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.

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.

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.

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!!

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.