Tuesday, October 28, 2008

A Little from a Lot Campaign Update

Watch it go!!! It's working! As I write, the Sally Robertson Benefit Fund totals over $19,000. And I have more donations to deposit today. THANK YOU to everyone who has already contributed. I am in awe of the generosity and support I am receiving. In addition to those of you who have donated, many more have pledged. And many of you have forwarded my message on to your own email distribution lists. I have received many contributions from people who I don't know personally, but you, my family and friends, have brought into my world. Thank you for helping me build my team and my future.

I have learned that I won't always know who the individuals are who mail checks to the bank or make cash deposits into my fund. So those of you who I haven't been able to personally thank, THANK YOU!

I am really starting to believe that $1 at a time, my goal of $210,000 is really possible. While my heart still breaks at having to ask for help, I have gained exponentially by knowing, really knowing, that people care. And not just people who know me personally. But people who once made aware of my situation and the gap between what insurance covers and what a transplant actually costs, are willing to help a stranger close that gap. Incredible.

Wednesday, October 22, 2008

A Little From A Lot Campaign Roll-Out!

Admit it. You knew it was coming. Many of you had already asked me about it. Yes, I am asking you to help me. Financially.

I need to raise a minimum of $210,000 in order to receive a bone marrow transplant. I will have to write a check for $179,000 to cover the portion of the transplant that my health insurance does not cover. I will need approximately $30,000 for living expenses and out-of-pocket medical costs during a four to five month stay in Seattle. There will also be numerous additional medical expenses as my deductible, co-insurance, and max-out-of-pocket begins in the new year and a whole new prescription regime becomes the norm.

I am asking you, my friends and family, to donate. I am asking you for $1. If you are able to give more, please do.
It would take less than everyone in Spokane giving me $1 each to raise the money I need. So after great thought, I came up with the "A Little From A Lot" campaign. I am starting with you first. Please donate "a little". Whatever is comfortable. But I will do whatever it takes, one dollar at a time, to raise this money. And I have some pretty creative ideas!

I am unable to get a tax-exempt status because I am fundraising, at this point, only for me. I have been told, however, that a person may make a once a year tax-deductible gift to another person of up to $10,000. If you are able to give on a large scale, please confirm this information with your accountant before giving.

Checks can be made payable to the Sally Robertson Benefit Fund and mailed directly to the bank, Numerica, 2202 E. 29th Avenue, Spokane, WA 99203.

There is also a Donate button to the right, utilizing Pay Pal. Please note that I am charged a 2.9% plus 30 cent fee per donation. Pay pal deposits the rest directly into the Sally Robertson Benefit Fund.

You can track my success with the fundraising thermometer, also to the right.

Again, I am asking for your help. We simply can't do it alone. Anything and everything helps. I know that times are hard everywhere. People have even less money today than they did a month ago. The holidays are coming. So I am asking you to give what is comfortable, nothing more. At least $1.

You are a part of my new mission, to raise at least $210,000 and to educate others about the shortfalls of health insurance coverage for transplants. I will be contacting local and national media, philanthropic groups, community leaders.....Anyone and everyone I can think of who can help with my campaign and help me deliver my message. If you are part of a group, any group, and feel that its members would be willing to each give $1 to help save a life, I challenge you to take my message to them and ask. I will help you in any way I can, ie. pictures, letters, medical documentation, video, speaking appearance, etc.

Ultimately, after I have had the transplant and recovered, it is my intent to create the A Little From A Lot Foundation. This experience has taught me so much and I intend to take all the help, support, and experience and pay it forward. I plan to help others who face this gap between what health insurance covers and what it actually costs to get a transplant. So any unused funds will go into my Foundation. Should I be unable to obtain a transplant, or not need one, I will gladly refund your money. In the event that I should die between here and success, all funds will go into a trust for my children or will be refunded at the donor's request.

Thank you for being on my team, and Welcome to Sally Land!

Tuesday, October 21, 2008

Miscellaneous Sally Update

I got a haircut last week. My first in about a year. (I did have my q-tip look cleaned up once.) I have explained to Craig that I have saved us quite a bit of money on haircuts and styling supplies. Apparently, my savings pale to my net medical expenses....

I've learned a little more about my Social Security Disability status. I got a letter on Saturday stating that I will need to be examined by their doctor(s) before a decision on my appeal can be made. I remain amazed that this is even necessary, but of course will comply. It's odd to think that I apparently must convince their doctor(s) that I really have leukemia and really am sick. I also found out that a person doesn't receive Medicaire until two years after their approved date of eligibility. That's crazy!

Speaking of crazy, I continue to make progress in my behavioral health. I am actually really proud of how far I have come.

I saw the oncologist yesterday. My counts are moving fast, and not in the direction I want. I knew my body was changing. I felt it. My fatigue has turned to complete exhaustion and I am hurting more. So in a way, I was prepared to hear it. On the other hand, I wish it wasn't happening so quickly.

What it means in a practical sense is that I now must try the second-line chemo drugs. As in NOW. Because of their large expense (approximately $4,000 per month), the pharmacies don't stock them and so it has been ordered. It should be in Wednesday or so. Keep your fingers crossed and the prayers going that I will both tolerate it and that it will be effective. It is my last buffer to the transplant.

How do I feel about it? Scared. I also am really, really hoping and willing it to work. It would be a HUGE time-buyer for me, in addition to getting me out of this critical stage.

I am really excited for my Godmother and Mom to come to visit. They both arrive on Friday. Girl time!

Monday, October 20, 2008

Family Update

We are learning to enjoy the new normal. My medical junk aside, here is a brief update on my guys, including a couple "Craig" moments....

Our family has started boxing. It is actually a really great way to relieve stress. If you haven't tried it, I recommend it. Beating the crap out of something really makes a difference! I'm including a few pics of Brennan going at it.

We are officially ready for Halloween. It is quite an event to decorate with a three and five year old. Brennan is having a great time wearing his Spiderman costume from last year, which was packed away with the decorations. Craig remains unclear why he also needed a new Spiderman costume for this year... John Paul will be Ironman. No, of course we didn't let him see the movie. No, I have no clue how he knows who Ironman is. But "Kenny is Ironman too"!

Our friend Kathy Jones is taking the boys to the pumpkin patch this weekend. They are really excited. Finally we will have something to cut up with knives!

My Godmother, Denise, and my Mom, arrive Friday. We are all excited for their visits. Craig may actually get some time off! Does anyone want him? He is available this weekend as well as the following.

It would be a well-deserved "vacation". He had his bi-annual performance review today. I remain impressed with how well he has juggled all of this. His review reflected his dedication to both his work and his patients. I am very proud.

I did, however, forget to tell you a Craig story from Seattle. We were in the car at a stoplight, with the windows down. The crosswalk was beeping for the sight-impaired, warning them that the light was about to change. Craig says to me something to the effect that it amazes him how many businesses use that fake bird chirping to add to the ambiance..................

He has also been courting me with his talents on Guitar Hero. Remember all those great '80's songs by Poison? Somehow it's just not the same.

My final Craig story is that he has completed an exhaustive Google search of our names. If you are ever really, really bored, like he was, look us up. He has quite the volume of published work and I design dolls. He also seems to be a terrorist.

John Paul got his first report card. We are so proud of how well he is doing, all the way around. Our circumstances or not, he's doing an awesome job!

Wednesday, October 15, 2008

God Is Good

God is good. Always has been, always will be.

The Lord works in mysterious ways.... Isn't that the truth? Don't you wish you knew what He has in store for you? Wouldn't it be easier to know His plans?

The Bible has many, many examples of how Jesus healed. Healing, miracles are possible. They have happened. They do happen. But who gets them? Who doesn't? Am I asking the right way? Praying the right way? What if I don't get healed? What does that mean?

I don't know. But God does.

I have many times been asked why I am not angry at God. It's pretty easy to answer. The God I know doesn't assign cancer. Distribute car crashes. Or break legs. Stuff happens. We live in an imperfect world.

What God does do is remind us of who we are. That we were created to be a part of this world and the next. He gave his Son for us to have this crazy thing we call life. He challenges us to do our best and to check ourselves regularly.

No one said life would be easy. But He did promise to always be there for us. We may not need Him so much when things are going well. But He celebrates with us when things are and comforts us when things turn for the worse. His strength may be silent but I think that if you allow yourself to really be silent, you can hear Him roar!

I have grown a great deal spiritually. I would definietly say it is one of the gifts that I have received. There are a few people in particular I would like to thank for helping me find my way: Craig Phillips, Joyce Stitt, and Susan Brudnicki. The three of you have reached me. You helped me make sense of things I didn't know how to sort out on my own. You reminded me I had never really been alone at all.

Good Things

I have wanted to write for some time about the many good things that happened to me in Sally Land. They are vast and numerous! I couldn't begin to write or tell or remember all of them.... Suffice it to say, most people step up!

Sometimes, especially when you have behavioral health isuues, it is hard to remember that while you may be being held hostage by a disease, life is still going on. Thank you, to each and every one of you, who have been with me through this. I have often not been easy to be with. But even when I couldn't see through my disappiontment with life, you did. When I wouldn't get out of bed, you laid with me. When I threw up on you, you offered me the washcloth. When I didn't know how to keep going, you were strong enough to pull me through.

It's an interesting position of knowing you have a terminal illness. On the one hand, I want to take care of the many practical matters surrounding death and dying. On the other hand, I want to throw it all out and just be normal. It is slowly sinking in that there is a new "normal" in town. I'm still here. And you are still here.

I've learned how uncomfortable cancer and death and dying is for some people. I've learned how most of my peers are being faced with the potential loss of one of their peers due to illness for the very first time. I am learning that the words I often use seem appropriate to me but often really freak other people out. But you are still here.

All of you have done something for me. You may not know it, but you have. Thank you.

All in all, life is good. And I have been very, very blessed. It's me that's changed. And that leads back to the behavioral health specialists......

Great News!

You may notice to the right that I added a permanent feature to my site: The GREAT news that there are 994 potential full mtaches already registered! Can you believe it??!! Waiting to find out, I kept going back to the conversation at the Fred Hutch about there could be 3, there could be 1,000. Quoting Dr. Radich, my transplant doctor, "Bingo!".

Obstacle 1 jumped and cleared!

Since I am not totally sure about what happens next and how long it takes, I will let you know once I find out. From my basic understanding, I think they contact the potential matches nearest me, screen them to see if they are still eligibile, ask them to undergo additional testing (I think by blood draw at this stage) and most importantly, confirm they are still willing to be a donor.

I am still in shock! It' wonderful to have such good news!

Tuesday, October 14, 2008

My "Behavioral" Health

Huh. A few people have hinted that they would like to know how my "behavioral" health is coming along, but didn't really know how to ask. I imagine it's like asking a crazy person if they are still crazy. Yep, I'm still a little (or more) messed up, but I'm doing way better. I'm working my program and have three bevioral health helpers, a psychiatrist, a psychiatric nurse (she rocks!), and a counselor. I have two appointments a week, some groovy meds, plus homework. Who knew? All in all, I can say it's hard work but worth it.

My mind has to catch up with the changes in my reality. I find it very hard just to "accept". I still tend to think in the what-ifs, the buts, the maybes. All okay to an extent. Most of you know I am a "prepare for the worst and hope for the best" type. I just get stuck in "the worst" alot.

Many people advise me to be happy and value each day. That's very hard to do. I am grateful for so very much. But I feel robbed at the same time. Aren't you glad I have a shrink?

At the bottom of it all is anger. I am just pissed to have cancer. Pissed that breast cancer wasn't enough. Pissed at how my world has changed. Pissed at how I have changed. Pissed at how my family is affected. Pissed that my friends are affected. Pissed that I don't feel well. Pissed that I am depressed. Pissed that I am a burden. Pissed that I have no control. Pissed that I don't know what the future is. Pissed that I don't know how long I will live. Pissed that I was denied disability. Pissed that I can't drive. Pissed that the world seems to go on without me. Pissed that my health insurance doesn't provide adequate coverage for a transplant. Pissed that I need so much money to live. Pissed that I even need the transplant. Pissed that doctors can't fix this. Pissed that I can't be who I want to be. Pissed that I will leave my children without a mother. Pissed that I will leave my husband without his wife. Pissed that I will leave my parents without a daughter. Pissed that I will leave my friends. Pissed that I will be gone and everyone else will go on. Pissed. Pissed. Pissed.

I could continue, but I'll save it for my next counselor appointment. And for the punching bag we got.

Did I mention that part of my homeowrk is to blog?????

Monday, October 13, 2008

Health Insurance

I had kind of figured out over the years that health insurance isn't all that it's cracked up to be. First, you meet your out-of-pocket. Then you move into co-insurance mode, on top of a per visit fee. Then you reach the almighty max-out-of-pocket. Sure seems like you could do the math at the beginning of the year, figure out the worst case scenario, and just mail the insurance a check.

But there was always that whopping two million lifetime maximum benefit to fall back on if anything ever went really wrong.


Benefits are limited to what the insurance company deems to be customary and usual, not what they actually cost. And every visit incurs a visit fee. Many prescriptions are not covered. And all this fun after paying a whopping monthly premium for the family. And my husband is in the healthcare field and our insurance is "provided" by a healthcare company.

So it adds up. Anyone who has ever had to travel deep into health care territory has probably experienced this. Many of you may even have less health care coverage, or none at all. And I am empathizing with you and so many others out there who face the real decisions of giving something else up in order to see a doctor or get medications. Or plain old not being able to afford to seek the care you need. This is really getting me fired up!

Here's my kicker: During my consultation visit at Fred Hutch, we were under the impression that I had good covergae for the transplant. Then one day the phone rings and I learn that I will infact have to write a check if I want the transplant due to the shortfall between my insurance coverage and the actual costs. One super huge blow.

The transplant itself, not including HLA typing, donor search, donor harvest, approx. four months of living expenses in Seattle, a required caregiver, travel to and from Seattle, and some other related expenses, is $379,000. My insurance provides $250,000 for the transplant (or for any transplant, for that matter),which includes an allotted $50,000 towards finding a match, leaving $200,000 for the transplant.

Summary: Transplant costs $379,000. Donor testing and harvest is approximately $50,000 ($30,000 for harvest leaves $20,000 for typing and matching at $3,000/per. Cross your fingers for a quick match). Insurance pays $250,000 total. Since the donor testing and harvest comes first, before I could even leave for Seattle to get a transplant, I have to write a check for a minimum of $179,000. Incredible!

A transplant patient is required to live, with their caregiver, within a very small radius of the hospital and transplant center. The average person, accrording to Fred Hutch, needs at least $3,0000 per month during the four to five month required stay, until you are adequately producing your own marrow and thus your own blood cells. So with the living expenses and miscellaneous expenses not covered, it is suggested that one leaves for Seattle and the transplant with $30,000 in their pocket.


Bottom line: No way around it, I will need approximately $210,000 to obtain a transplant that holds the only possibility of a cure.

Accepting this "your life is worth xxxx dollars" has been one of the hardest emotional hurdles for me. It amazes me how that lifetime maximum seemed such a comfortable amount, BEFORE I learned about different riders and limitations that virtually all policies have. The companies have a way at making sure it is not too obvious that you are living within these limits.

Do you think a person could get a heart transplant for $250,000? A lung transplant? Any transplant? Out from underneath you is pulled the safety net, of knowing if you ever needed them, they would be there. Well, they may show up but they don't play the whole game.

PLEASE learn from this experience! Know what your policy will and won't do for you. Know that when you are really and truly in need of that covergae, its limits may not come near tha actual cost of the treatment you need.

I'm pretty pissed about this too. Here we were thinking we had to raise $30,0000. Huge task but somehow it felt do-able. $210,000......well, that's another story.On the one hand, it wouldn't even take every person in Spokane giving me $1 to raise the money. If only life were so simple.

Bureaucracy At Its Finest

Having a terminal illness sure is interesting! I have had my first real journey into bureacracy with The Social Security Administration.

When a person works, part of the taxes out of their pay goes to their SSA Disability account. There is a formula the government uses to determine what you paid in, over what period of time, and what you would then be entitled to should you become disabled and unable to work. Sounds good, right? Let's just say that I have been very lucky to have connected with a case manager who cares and have actually met in person. The rest, horrible. I was denied disability and judged to be able to work in some fashion where I don't have to sit, stand, or walk for lengthy periods of time. I am, to say the least, irrate.

I immediately filed for a reconsideration, their word for an appeal. Frankly I wonder who the board is that reviews this stuff! My case worker had been so confident that I would be approved due to the "terminal" part of my illness. But alas, we are in holding pattern while we await a second decision.

As many of you know, I have not worked since I was first diagnosed with breast cancer and had a double mastectomy in November 2007. So the family finances had already been hard-hit with breast cancer. Then we turned around and got hit with leukemia.

It is a very helpless feeling to know you paid in, to know that you are physically unable to work right now, yet be denied disability benefits. The stress of not having this go more smoothly has not helped either.

Let me repeat: I'm really pissed about this. I'm mad about what it is doing to me, my family, and to other people out there who genuinely need this help. It's actually kind of scary.

The Basics of a Bone Marrow Transplant

Totally out of my league here. So I will begin by quoting from "Preparing for Transplant" by Seattle Cancer Care Alliance.

"The purpose of transplant is to cure otherwise fatal diseases using high doses of chemotherapy, irradiation, or both. Because of the intensity of this treatment, your body is not able to make blood cells. Your ability to make blood cells is restored by giving you stem cells. Healthy stem cells are given to you, that is, transplanted into your body. The stem cells grow and restore your body's ability to make blood cells.

Stem cells are very young cells which mature and develop into red blood cells, white blood cells, and plateletes. Red cells (erythrocytes) carry oxygen to other cells in your body. White blood cells (leukocytes) fight infection. And plateletes (thrombocytes) help your blood to clot. All of these cells develop from stem cells.

Stem cells are produced in your bone marrow. It takes several weeks for the stem cells to regrow (engraft)in your bone marrow space, and eventually produce red blood cells, white cells, and platelets. During this time you are susceptible to several complications and will need close monitoring.

In an allogenic transplant, you receive stem cells from a family donor or an unrelated donor. The donor chosen has a tissue type which matches your tissue type as closely as possible."

The process has been explained to me as essentially having three steps: conditioning, transplant, and engrafting.

Conditioning includes high dose chemotherapy and total body irradiation. This step destroys the body's cells and marrow, basically emptying you to be ready to receive the transplanted cells. During my consultation, this was explained to take around seven to ten days.

The actual transplant doesn't seem to be a big deal. The new cells enter the body through a bag that looks alot like a transfusion bag.

It's the next 100 days that's the huge deal. Approximately 10-28 days post-transplant, signs that new bone marrow or stem cells are growing and beginning to make new blood cells are expected. This means that engraftment is taking place. After that, it's watch and wait, and hoping that all the icky stuff that can happen, doesn't, and all the things that can go wrong, don't.

All in all, the transplant requires an average of four months in Seattle. And alot of ickinesss.

Finding A Donor Match

Well, I am officially in the phase of "typing". This means that the same sort of extensive tests that are done to identify a donor match are being done on me. This process began about ten days ago, after finally receiving approval from my health insurance company (More on them later....). So it's pretty exciting to know that the journey has begun.

After all my particulars are identified, Fred Hutchinson will search that National Bone Marrow Registry to seek a match. There could be 1000 potential matches, there could be three. The number of "Potentials" is significant because it provides the pool from which more thorough "typing" can be done.

The actual testing performed is to determine HLA typing. "The HLA system produces a tissue type that is distinct from the red blood cell type that determines transfusion compatibility." (LLS) So it could be any gender, race, age, etc.

"The tissue type of an individual is determined by the proteins on the surface of cells." (LLS) So it is actually these proteins that determine a suitable match. They are located on chromosome six in tissue cells. My further layperson explanation is that these proteins are further divided into two groups, Class I and Class II. Class I had three subtypes, A, B, and C. Class II consists of subytpe D.

"HLA types are determined by a method called "molecular typing". In this technique, the DNA of the recipient and prospective donor are characterized to identify specific genes that direct the formation of the HLA anitigens on the surface of cells." (LLS)

Please note that I am quoting the Leukemia & Lymphoma Society on alot of this stuff. Even though I have had it explained to me a number of times, apparently I did not pay enough attention in all classes that included genetics.

Usually testing would begin with siblings. However, I have no blood-related siblings. Because of the genetic complexity of it all, it is almost the same probability that a stranger will match me as one of my children.

So the end of my layperson's explanation is that they search the registry for a potention match. If one is found, they then ask that person to do additional testing to check to see the level of compatibility on a more detailed level. If we get a bingo, that person would then be asked to be my donor.

Many of you have asked how you can check to see if you could be my donor. You have no idea what that means to me. But I do ask you to think about what it would mean to you. I am going to write more about the actual transplant process later, but please be aware that you can't be typed just for me. By entering the National Bone Marrow Registry, you must understand that you are volunteering to be a donor for anyone. If that is not a commitment you are ready to make, then now isn't the time to get tested.

If you would like further information about becoming a part of the National Bone Marrow Registry, please contact your local blood bank. They can tell you what programs are available in your area.

Ugh....Long science lesson for so early in the morning! But the good news is that my almost perfect match might already be out there.

Thursday, October 9, 2008

What It Feels Like, Physically

Back by popular demand! I have wondered how many of you are getting tired of hearing from me or reading about all my "junk". I guess this blog is taking on more than just as an update source. It is also becoming cathartic, writing down all my "junk". My shrink had assigned me the homework of journaling, anyways, so I guess the reason for the blog is a little of alot. Again, you have total permission to quit reading, but I'm going to keep writing!

Anyways, many people ask me how I feel. Not just if I feel good, okay, or bad today. But what it feels like in my body. So here goes....

I hurt alot. My whole body hurts, kind of like when you have the flu. My hips and sometimes other bones hurt most, sometimes really bad. I have started having headaches too, which is a new thing for me. I have never been a headache person. This symptom, however, may very well be due to stress rather than illness. From my perspective, I don't care much why, just that it hurts. But I am hoping that as I get my "behavioral" health improving, the headaches will go away.

My hair and nails grow really fast. Weird, huh? It surprises me that from being bald just months ago that I have so much hair. I tried to do a little trimming myself-not so skilled at that. I can't bring myself to go to Great Clips, so it looks like my hair guy may actually get to add me back into his client list.

Acne. Ugh. I don't think I have broken out like this since I was a teenager! Perhaps some of it is hormonal due to surgically-induced menopause, perhaps some stress. But I really thought at 38 I would be past this!

Muscle cramps, spasms, and knots. Undoubtedly stress and malnutrition play a part in this. That starving thing again. And I forgot to also mention that malnutrition also causes acne. Who knew?

The lovely GI system. Chronic diarhea is enough to drive anyone crazy! This also doesn't help with the eating/gaining weight thing. Nausea and vomiting come and go, often dependedent on what meds I am taking.

Fatigue is a huge problem. My body is simply tired. Obviously it is worse when I am not properly nourished and also worsens as the day goes on. But I am so tired of being tired. Sleep doesn't take care of the fatigue. And I wake up alot during the night, whether it be from pain or nightsweats.

I feel weak. I really don't like that feeling. The weakness, fatigue, dizziness, diarhea, and pain interrupt what I want to do and who I want to be.

Essentially, I spend alot of time resting and doing things that can be done sitting.

I also can't drive anymore. Frankly it would be irresponsible to do so. Driving a car and passing out don't usually work out so well. Plus with some of the meds I take, it's against the law. There was also the incident, while on Gleevec and dealing with all of those freaky side effects, including the loss of spacial relationship, that I scraped the side of my car along a bright orange concrete pillar in the doctor's parking garage...... That was the big red flag that I really shouldn't be operating a vehicle or heavy machinery.

I must admit, that to be defiant and give the whole thing the finger, I occasionally, when I am feeling good, drive the three blocks to the grocery store/pharmacy. I take an alley.... In a weird way this helps me feel like I still have a little bit of what I lost.

Other than the above, I just feel weird. It is an intangible description. My best attempt to describe it is that I just feel like something is wrong in my body. Sometimes the sense is greater than others. I find it rather unsettling.

It makes me angry that I have to accept that feeling like crap is now my norm. I am a hostage in my own home. I don't have the energy to do most anything.

Summary: Leukemia sucks!

Wednesday, October 8, 2008

My Medical Status

Now that you all know what's going on with my "behavioral health", I want to share with you where I am physically.

The immediate goal, meaning the two weeks bewteen oncologist appointments, is to continue progressing in my general physical and "behavioral" health.

I had literally ended up in a state of starvation. It was very unnerving, as if I could actually feel my body dying. I started exhibiting other medical problems the weaker I got. The worst of it, in many ways, was passing out. Twice my children were near me and thought I was dead. And the time I hit my head wasn't so great either.

For both physical and emotional reasons, I wasn't eating and keeping in enough to sustain me. I am now on a nutritional supplement regimen and am eating, even when not hungry. Another one of the areas where my way wasn't working. I had been stubborn about that I shouldn't have to eat when I wasn't hungry and/or when food looks or smells repulsive. Quick trip to starvation that way! Also, I have learned that malnutrition impacts your "behavioral" health and contributes to depression. Who knew?

So I am trying to pack on the pounds and I am making some progress. Yeah me!

Because of my crappy condition, I have yet to be able to even try the other oral chemo drugs. My oncologist and I both agree that if I try before I am ready, I am setting myself up to fail. And I need to be able to give everything I have to tolerating these medications. They have the potential to buy me some good time.

My "counts" have started heading the wrong way again. I will at some point try to explain more of what all that means, ie. what they are actually measuring, checking, and monitoring. For now, the easy explanation is that whenever I go to the oncologist, they draw blood to check my counts. This tells us if I am holding steady, improving, or deteriorating. The greater and quicker the shifts, the quicker I head towards a crisis. So my next count check on 10/20/08 will be an important piece of information.

Many of you have asked questions about bone marrow donating, matching, the transplant process, and more. I plan to write about those topics soon, at least answering as best I can for a layperson with cancer training...... You may also want to try my link to the Leukemia and Lynphoma Society. They have lots of good and scary info there.

Each day I feel a little stronger. And that is a good thing.

Tuesday, October 7, 2008

No Pics from Nervous Breakdown

I forgot to tell you all that unfortunately I have no pictures from the breakdown to post. Could have been interesting......

Taking the Sally Land Ride

You may have noticed that I hadn't posted anything in quite awhile, nor sent any pesky emails, nor returned calls, nor answered letters and notes, nor answered emails, etc. Well, I've been on the Sally Land Ride. And it really sucked.

Essentially, I had a nervous breakdown, or whatever today's pc term for it is. Many of you know I have had bouts of depression at various points in my life. But you know the kinds of conversations you have about "going over the edge" or "I'm about to fall apart"? Yup, now I know what that's all about. I fell, I went.

I share this not because I am particularly proud of it. I share it because it is real. And it happened. And it's the truth. One of my new rules is that I am going to be totally honest with people and let others decide if they want to listen. Again, let me know if you want off the email list......

Basically, I think the bulk of it was that I kept myself so busy doing things, some important and others not, that I didn't allow myself any time to think and feel about the reality, gravity, and complexity of my situation.

It's also ironic that it seems that I have never had more times that I felt people, well intended, were trying to tell me what to do, how to do it, how to think, what I should feel, and so on. Very quickly I felt that I met no one's expectations and that I had literally failed at everything.

In short order it seemed there was really no point in living, because this disease is likely to kill me anyway. Why be such a burden? Where is my value?

Ultimately I figured out that it really wasn't that I wanted to die, I just didn't want to live like "this" anymore.

That pit was dark and scary. I am proud to say that I have made a great deal of progress with the help of my new friends at "Behavioral Health" (sounds like I was bad at school and sent to the principal's office). I am working a program, for lack of better words, and am quite confident that the worst is over. My main goals for the next few weeks are to build myself back up emotionally and physically. And the physical/medical stuff will require another post, my friends.....

Again, I have been blessed by having so many people in my world that care about me and have helped me through this latest ride.

Craig's Story, As Told by Me

Let's get one thing clear: I imagine Craig might tell you his story differently than I. But since he doesn't have a blog, I get to tell it my way....

Craig continues to amaze me with his ability to do it all. It has taken a great deal of time, energy, patience, and determination to keep this family running. His life is full of double-duty and over-time.

In addition to having to deal with my problems, his heart and mind have also been heavy with his father's recent cancer diagnosis and subsequent surgery. He has much wanted to be there for him (Las Vegas) but for a number of reasons it has not been possible yet. We are hoping to get him down there for a long weekend towards the end of the month when my Godmother, Denise, is here.

His Grandma Kate is in decline. This may be more expected due to advanced age, yet it is still difficult and another way that illnesses and disease are affecting his life.

Then, of course, he spends 10 hours a day at work treating people with illnesses, diseases, complaints, bitching rants, etc. Thank goodness some people go to the doctor for just a physical or check up!

The new Rockwood Clinic Quail Run is open and the office has moved. To his dismay, Craig must now commute an extra eight minutes to the office! It is a beautiful clinic and much ado has been made of it. It is difficult, however, in some ways to see all the money spent on the prototype facility while everyone is hurting so much economically. Then again, they didn't know how things would be in the country when they started building it.

His office is still next to the principal's, so he is managaing to keep out of some trouble. His friends at work have been remarkable in their continued support. In fact, his coworker Kathy Jones created a Birthday Eve party, which took place in our driveway and garage. Somehow much of our lives seem to happen out there.... Anyways, it was good fun, a little crazy, and a nice surprise as we weren't in a fincial position to do much to celebrate this year. I'll post a couple pics, one clearly showing what he feels about turning another year older.

Much to his disappointment, fishing season is closed. That was one of the few escapes he had this summer. The good news is that hunting season is on the way. In the meantime, he continues to play with the neighborhood kids. He is actually quite popular.

I'm adding another couple of pics to amuse you. One is of his "attack", along with our neighbor and friend Mark Lenz, on the bees that had been invading our house. Apparently it was great fun as he got to use raquets, electric zappers, chemicals, water, and who knows what else. Any win is a win.....

Now, since it is my blog and he rarely reads it, I am also posting a picture I really love of him in the bath with Brennan and John Paul standing by. Don't worry, nothing is exposed.

Hope you enjoy, and thank you for your continued support and recognition of how well he is doing with such a full plate. He needs those kudos!

John Paul's Update

John Paul continues to be, well, John Paul. He is loving all-day Kindergarten and doing well there. He received his first report card and we are very proud of his success, despite all the turmoil in his world. His favorite part of school is apparently recess and P.E. Many of you may know he is a sports fanatic, so this comes as no surprise to us. It's funny that he won't share too much about his days at school. I am quite suspect of a continued crush on a classmate and a new heavy-duty crush on his beautiful and smart teacher. Frankly I had no idea these things began so early!

He lost his first tooth and then quickly helped himself loose another. The teeth pulling has slowed down.....

He has started planning his birthday party. This has entailed his putting together a list of 59 kids to invite and giving us a few options of where to hold this party. We will be compromising on this. Somehow.

His class takes a field trip to the Pumpkin Patch today. Always a favorite.

He still idolizes our friend and neighbor, Steven, and is adding another friend and neighbor, Brian, to the list. The older boys come over often and invite him out to play sports. He is fortunate to have this outlet and activity.

Other than the above, he continues to ask a million questions and amaze us with his intuitions.

Brennan's Update

Hooray! The second cast has been off for a few weeks now and things are going well. His gait continues to improve and he is slowly returning to being a crazy three year old. He spends his days at the daycare across the street and has made a new friend, Jack. They are good buddies.

He is making progress towards potty training and has been told we will buy no more diapers. What pressure! But he is getting more interested in going to preschool, where he must be potty-trained to begin. Wish us all well as the diaper supply dwindles.....

He has developed a real hatred of bedtime. It is challenging us! We know he needs the extra love and attention but we also need to go to sleep!

Other than the above, he is doing well and still cuddly. Thank goodness that hasn't passed yet!

Saturday, October 4, 2008

Benefit Rummage Sale Rocked!!

On Saturday, September 27, 2008, the first fundraiser was held. It was incredible! And on so many levels. We raised $5,0000!!! With very low overhead expenses and very cooperative weather, it was a win by a landslide.

Thank you again to everyone in the Spokane area who donated items or goods to be sold at the event. And thank you to all of you hardcore workers who organized, transported, set-up, supervised your item areas, negotiated every last penny at the pay table, sold goodies (including Krispy Kremes and Fresh Lemonade Stand), delivered large items to the buyer's home, and then, after a long day, helped load up the trucks with the left over items for the next day's yard sale and finish cleaning up the parking lot in time for the 5:00 pm Mass parishioners to arrive!

It was a lot of work in picking items donated, getting organized, and pricing. The night before, when numerous garages were full and also a few front yards, I was doubtful that in the wee hours of that next morning it would all come together seemlessly. But it did, ye of little faith!

So after all the work to produce that day's seven hour Benefit Rummage Sale, the Sale's Fearless Leader, Jenny Hinch, woke up on Sunday and held another seven hour yard sale at her home.
I want all of you to know that what was left-over after the second sale was very carefully sorted and specific types of items where donated to groups with specific item needs, such as linens to the animal shelter, business clothes to a battered women's shelter, and household goods to a local organization who helps families start up again after loosing their home to fire. I am proud that the goodness that inspired and fueled the sale continued until every item donated found a home.

I'm posting some pictures so you can see a little of what the day was like. It was held outdoors at Our Lady of Fatima Catholic Church, where All Saints Secondary Campus is also located. We had great weather in the low 70's with no rain. Our local NBC station was out at 7:30 am with a live feed to interview the event's organizers and help get the word out about the sale.

I know that I will not be able to remember and recognize everyone who helped and most certainly deserves the recognition, but I must at least let my world know about some of the most awesome efforts put forth on my behalf.......

Everyone who cleaned out their homes and garages and donated items.

Everyone who made pick-up runs of items, easpecially Jenny Hinch and Keri Garr.

Everyone who stored items in their homes and garages, especially Jenny Hinch, Rhonda Ritchie, and Pam Becker.

Everyone who helped get the word out, got the event media attention, and told their organizations about the sale, especially Jenny Hinch, Belinda Jacobsen, Susan Brudnicki, and Teresa Morris.

Everyone who helped set up and sell the items, especially Rhonda Ritchie and Selena Winston.

Everyone who made goodies and sold goodies, especially Teresa Morris and Mason Morris, and Pam Becker. And a special thanks to Dan Kennedy on this one, for bringing his lemonade stand.

Everyone who organized areas and monitored them, especially Suzie, who was lent to us by Denise Fox.

The Church for letting us use their parking lots and electrical access.

The Knights at Gonzaga Prep for their strapping young men who helped move everything to the sale site at an unreasonably early hour for a teenager and their supervisor Mr. Olney.

Albertsons for donating the balloons.

Our neighbors, The Sauberans, for watching our children all day.

Brad Blackhart for doing dump runs with unsold/unuseable items.

Mark Lenz for the use of his business truck to transport items to the Church and then to Jenny's for the yard sale the next day.
Keri Garr for helping me throughout the day.

My husband and many others for just doing whatever they were asked to do!

A very special thanks to Jenny Hinch, Belinda Jacobsen, Rhonda Ritchie, and Teresa Morris for putting this event together. Their organization and determination left no room to fail!

To everyone who helped, to everyone who donated, and to everyone who bought.......


Deleted Trip to Fred Hutchinson Post

While I wait for an answer on how I can hopefully recover the post regarding my trip to Fred Hutchinson and Seattle Cancer Care Alliance, please enjoy these pictures from the trip. Especially since it was while trying to add these pictures that I accidentally deleted the damn thing anyway.......