Wednesday, November 26, 2008

A Heart Filled With Thanks

This year is perhaps the most profound Thanksgiving I will ever experience. Despite all the troubles, fears, stress, and unknown, I have a rather unique perspective of really being able to see what is important in the "big picture". And with that perspective comes an overwhelming sense of having been incredibly blessed in my life. I am truly a fortunate person for all that is in my life. I have the "things" that really matter to me.

It is so easy and so natural to focus on our hardships and what we feel we need. Sometimes, I am so caught up on all that I have lost or feel like I am losing that I forget to see what I have and have had.

Tomorrow my family will join my best friend and her parents and Grandpa for Thanksgiving, as we have for many years. As grace is said before dinner, I will fully be grateful to be there. I will thank the Lord for giving me this life and all the wonder that has come with it. I have never been as thankful and grateful before in my life.

To you, my family and friends, and readers as well, Happy Thanksgiving. Embrace it, feel it, live it.

Monday, November 24, 2008

Some Cool Things

I thought I might write about a few other cool things that have happened lately. As most of you know, I rarely get out of the house, unless it involves some kind of medical activity. So when new things happen, I get excited!

John Paul's school, All Saints, held their annual Snowlflake Gala fundraiser. It was so fun to get dressed up, actually wear make-up, and go! It was good to see many of the parents that I miss so much by not being able to drive John Paul to school. But the event itself was beautiful. We didn't get to stay very long but it was great to be there at all. Congrats to all who worked so hard on the event. I hear that the auction was very successful.

Another fascinating thing that I have been peripherally a part of is my friend Belinda father's journey with deep brain stimulation surgery. He has suffered from Parkisnsons for years and was brave enough to take this big step. It is inspiring to realize the advances that are continually being made in science and medicine.

The "A Little From A Lot" fundraising campaign continues to grow. It is absolutely amazing! If you have a minute, scroll down the list of donors. I have been blessed by so many and from all around the country, and beyond! Thank you to all of you who have helped by donating, by passing along my message to others, by praying for me. It ALL matters.

Last Friday night a fine jewelry show, featuring Terese Designs, was hosted as a fundraiser for my campaign. Not only was it a fun event, it was also quite successful! Many thanks to Stephanie Perko, Shelley Johnson, and Terese Designs for their work and fun! I am truly sorry I could not be there.

Finally, when I awoke yesterday I found an envelope on my nightstand. It contained a one dollar bill from John Paul. This is why I keep fighting.

A Visit From My Cousin Anne

We recently had a wonderful visit with my cousin, Anne, from Oklahoma. We had reconnected last summer when I was in Norman for my 20th High School Reunion. (Go Tigers '88!) She came for a long weekend and we had a great time together.

It was especially nice that she was able to meet Craig and the boys. Anne was amazing with the kids and it means so much to me that they now know her. And I think that they very much enjoyed their new playmate! Included in their fun together, she braved taking both boys to see the new Madagascar movie and hours at the park.

I suppose it is when we don't know how much time is left in our lives that the concept of family, and extended family, becomes increasingly important. Anne was a very special person in my childhood. And it felt like we seemlessly picked up where we left off.

I must give her special props for enduring the Toys 'R Us tour for the boys to establish their gift wish lists. We both agreed that they must think Santa is immune to the current economic times......

To family, and reconnecting!

Friday, November 21, 2008

From Sally Land, With Love

It's been awhile since I have written or worked on my site. Or answered emails. Or returned phone calls....Partly because I was having a wonderful visit with my cousin, Anne, from Oklahoma. (I will post more on that later as all good things deserve their own space!) I also hadn't written because I wasn't sure what to say, if I wanted to share it yet, and how to put it all together to even write it. So here goes.

I am done with all treatment options other than a bone marrow transplant. As I write, I await a call from Fred Hutch to schedule me to come on over.

I am terrified. I am terrified of going through the transplant as well as what it will do to my family. I am beyond terrified that I will leave for Seattle and not come back alive. I can barely even look at my family as I feel so guilty that this happening not only to me but to them.

I just updated the fundraising thermometer. Isn't it amazing! It is hard to believe that with all the financial effort of so many people (I haven't updated the donor list yet) that money can still be the difference between transplant or no transplant. Life or death.

Yesterday in the oncologist's office, as I tried to negotiate away the leukemia and the transplant, which by the way, did not work, I cried because I am in this position and stuck. I asked the doctor, through my very pretty tears, how in the hell I am going to pay for this. Her response is that somehow these things usually work out. I want to believe that, I really do. I just don't understand how.

I am told now the insurance company transplant person will get involved. Perhaps that person has the magic wand for changing what they will cover.

I left a message yesterday for the Social Security Disability case worker letting them know that hopefully I am now sick enough to qualify.

Okay, now I am getting nasty. So I will stop. When I have come out of the "hide under the covers and maybe it will go away" stage, I will get my site updated. But I wanted you all to know what was going on. And I mean it, thank you for being on my team.

I am told that things are in the works with media outlets. So maybe you will see me soon. Yes, I will haul myself out of bed and take a shower first.

And yes, I will be seeing a member of my behavioral health team today.

And yes, it really sucks.

From Sally Land, with love.

Friday, November 14, 2008

Visits and Some Fun

A couple of weeks ago, I was fortunate to have my Mom and my Godmother visit. Not only was it helpful having them here, it was also a lot of fun. Especially since I am fairly trapped in my house, I really enjoyed the company.

Tonight my cousin Anne (from Norman, OK) arrives for a long weekend visit. I had the opportunity to reconnect with her when I was in Norman in June for my 20th High School Reunion. She has never met Craig or my boys. I am really looking forward to having her here.

Tonight is also the annual All Saints Auction. Craig and I will be going for a couple of hours, until it is time to pick up Anne at the airport and I have way run out of steam. But it will be fun to wear something other than sweats and jeans and to see so many of the parents I so miss because I can't drive John Paul to school.

A couple of days ago, my friend Paul came over for a visit. I hadn't seen him in quite some time. I'll post a couple of pics. I worked with him years ago and I remain very fond of him.

Seattle Housing Issues-Answers to Your Questions

I have had many questions about what the deal is about having to stay in Seattle for approximately four months if I do get the transplant. I have even had very kind offers to help with housing issues.

Unfortunately, until I have the money for the transplant and then have dates for my transplant, there is little I can do to work on this aspect right now. There are many options available through the Housing Information Packet I received from Fred Hutch. There are furnished apartments, long term stay hotels, hotels with suites, and even private apartments which are offerred at reduced rates to Fred Hutch patients. But since I don't know dates, I have backburnered this whole thing. Obviously, it is too soon to work on it because they wouldn't know their availability until I know when I would be there.

The essential requirement regarding Seattle housing is that it must be within 15 minutes, including traffic, to both Fred Hutch and the UW Hospital.

The only other "requirement" is that it must be able to accomodate both me and my caregiver. It would be preferable if whoever my caregiver is (That is an entirely different obstacle I must deal with when it's time) that they could have his/her own bed. Since Craig will not be able to come with me and because I will be pretty sick while I am recovering, separate sleeping spaces would be ideal.

Thank you to all of you who have offered help with this obstacle. But until I have dates, there is really no way for me to start making plans. I'll keep you posted!

No, I am Not A Virus!

The great news is that my message is spreading throught the country. So many of you have passed my message along to your email distribution lists and my A Little From A Lot campaign has been introduced to a countless number of people. The funny part is that some poeple have thought it was one of those school projects that sometimes circulate. And a number of people have contaced the people who have sent them my message because they thought they had received a virus.

I would say that it shows several things. One, that my message is spreading far and wide. Two, alot of people are working on my behalf. And three, now I understand a little bit more about how real viruses happen.

Please keep up the good work. If it wasn't working, I wouldn't even have my clain to fame as a virus!

My Leukemia Mentor

It's time to write some fun stuff!

I have been matched with a "mentor" through the Leukemia & Lymphoma Society. They have a program called First Connection where they will match a person who has been through all of this. My mentor lives in Ontario, Canada. We finally "met" by phone. She was very inspiring to me. She was able to answer many of the questions I had that I wanted a patient's perspective on, not just how a doctor describes things. She had her bone marrow transplant in 2004. She told me her life is back to normal, despite a long and tough road getting there. But it was very helpful to talk with someone who has been through all of this.

She did tell me something I didn't know and had never even thought about. Once a person gets through a bone marrow transplant, the patient has to get all their childhood immunizations again. Because the chemo and radiation to prepare for the transplant completely destroys your old immune system, it's like being a baby with a new immune system. Weird, huh? Who knew?

Administration of My Blog-Your Questions Answered

A number of people have asked who manages my blog, from who writes the posts, to who enters the donor names, and who updates the fundraising progress thermometer. It's all me. So please forgive me if it takes some time to get things updated. It is not a lack of appreciation but the simple logistics of doing it myself. Some days just aren't as good as others for me.

Please also know that there is a lag between when donations are received and my receiving the information. When checks are received by the bank, they mail me the information regarding who the donations are from. So it takes a few days before I receive that information. So the progress thermometer reflects the balance I see by checking the Benefit Account account balance online.

Likewise, when someone donates via PayPal, I must then request a transfer of those funds into the Benefit Account. It doesn't just go automatically.

A few people have worried that perhaps their donation was not received because their donation hasn't been posted on the list of donors. I have found that they do get deposited but it just takes some time for the bank to notify me. I also wait for a few deposits to accumualte in the PayPal account before transferring the balance. So this also delays by a few days what the thermometer accurately reflects.

The good news is that donations are still coming in!

New Medical Info

It's been a bit since I last posted. It's been a hard ten days or so, physically and mentally. I had partly waited to write anything new because I had hoped to have better news since the last time I wrote. It's taken some healing in several ways to be ready to talk about it.

As you may remember, I started one of the two second-line chemo drugs and that resulted in another stay at the hospital. When I went to my own oncologist after that, we decided to give a try on the third and last chemo drug. It took awhile for it to get to the pharmacy. It's cost is $6,795 per month. (Thank goodness I only had to pay $40 for it whith my health insurance prescription coverage.) For obvious reasons it's not kept in stock.

So it took awhile for it to arrive here in Spokane. It came with all kinds of crazy warnings. It even required that the pharmacist read to me a five page hand-out from the drug manufacturer before they would let me leave with it. All the printed information on it starts with "Warning. This drug may cause sudden death." So with trepidation, really for the first time with all of the meds I have taken, I started taking it.

Three doses later I was back in the hospital. I am allergic to some part of the drug. It wasn't side effects but a true allergic reaction. So no more of that medicine.

We met again with my oncologist yesterday. I sat there with tears in my eyes, trying to bargain some way I could keep taking any of the three chemo meds. My doctor really didn't think that it would work, particularly because all three have put me in the hospital and I wasn't even at the dosage level high enough to be effective. Another try could likely result in even stronger side effects from the first two and an even worse allergic reaction to the third. She is however contacting the head of pharmacy in Seattle to find out if there is any way it would be worth trying again. But the last one is not an option at all because of the acute allergic reaction I had.

The next step, the only step left, is likely the transplant. But hopefully we can figure out some sort of timebuyer as I continue to fundraise and continue applying for every grant possible. But my heart is broken that I can't take any of the drugs. It is hard to accept that I have failed each of them.

I am so incredibly disappointed. I am so incredibly sad. And I am really, really afraid. I am still overwhelmed that all of this is happening. I plan on giving myself a few days to mourn this and then rally up and press on.

Monday, November 10, 2008

One Year Anniversary of My Breast Cancer Diagnosis

Today marks one year since my surgeon called me to tell me that my biopsy had come back with cancer. I don't really have much to say about it other than it is a huge day, but it passed much like any other. And here I am. A double mastectomy, a surgery for complications from the double mastectomy, a total hysterectomy, a surgery due to complications from the hysterectomy, six rounds of chemo, a bone marrow biopsy, a diagnosis of Leukemia, two failed chemo trials and several hospitalizations later. I'm still here.

I'm tired. But I am still here!

Sunday, November 9, 2008

Fundraising News

I could never have known how all of you would respond to my "A Little From A Lot" fundraising campaign. So many of you have contributed. So many of you have passed my message along to your own email distribution lists and to groups or organizations in which you belong. My message is literally circling this country, sometimes even the same person twice from different sources. Thank you for doing this for me.

Not only is money being raised, it has given me several opportunities to reconnect with people whith whom I had essentially fallen out of touch with. I have also received many notes of encoragement both sent directly to me and from notes included in donation envelopes mailed to the bank. I have met many new people who you have brought into my life. Several people who have specific knowledge in fields related to my battle have reached out to me to offer their input and ideas. So the results far surpass fundraising alone.

But it is incredible! The way people, family, friends, and strangers have stood up to actively support me in reaching the monetary requirements to get the transplant. I have received donations from $2 to $10,000. Are you amazed? I am.

The generosity of others has inspired me and definitely renewed my belief that this all may be possible. Thank you, again.

Donations are coming from around the country and even one from Europe. How cool is that?!

My highschool class, The Norman Tigers of '88, received an email of my sitauation and many have reached out to help. How cool is that, especially after what a snob I was?!

I even received a donation from a man who I don't know who he himself awaits a liver transplant. He also took the time to write a note to empathize with my battle with Disability. He too was denied and denied but after hiring an attorney finally was approved.

I have had the offer of a very sizeable loan in the event that it would make a difference. It blows my mind that someone who I don't even know would be willing to offer something of that magnitude.

I have had several offers of potential housing solutions for my stay in Seattle.(I will write more on this topic later.)

I think sometimes we see so much of the not-so-great in the world that we forget about all the good. I can tell you first hand that there remains a great deal of good in this world. I am lucky to have this unique view of it.

The Latest Medical News

Hooray! I am off the oxygen! Mt sats are good enough and that's all I needed to hear. But all the equipment and tanks will remain in the event that I need them again. I have to admit it seemed strange to me that I would need it all so urgently and then in short time not need it at all. I will add that to my ever-growing list of weird things.

My regular oncologist, along with my transplant doctor, and Craig and I have decided to give a final last try on the final last chemo available. It is a newly approved drug, not long out of clinical trials and government approval. While there is little optimism that I will tolerate it, it could happen. Regardless it is important to do whatever can be done to keep my counts in a reasonable range. And we never want to look back and wonder "what if".

It has been on order and should be in soon. Like the others, with the cost of approximately $4,000 per month, no one keeps it in stock. Hopefully it will be in tomorrow and we will give it a go. It's an odd mental place to be in to know you have to try, you have to hope, but that there is a good likelihood that it will make me very sick and possibly result in another Sacred Heart vacation. But I have to try.

I am learning more about the range that one's counts must be in to be deemed a good investment by the health insuarnce company and also about how what range your counts are in affect the outcome of the transplant. So pretty much whatever I have to do to keep within those I will need to do.

I had my consultative exam last week for Social Security Disability. Unbelievable. And it's our tax dollars at work! Of an hour and a half appointment, I would say a third went to me completing forms and questionnaires. It seems like I could have completed them in advance and brought them with me. I'd say another third of the time was spent with me talking about how my illness has affected me emotionally, by answering his questions. The other third was spent by him telling me about himself, his education, his work at NIH, how big of a Nebraska fan is, his wfe's battle with breast cancer. The other half was my answering strange questions such as "Who is the President?" I literally asked him if he was kidding. I really thought he was.

I couldn't begin to guess if I did well in the sense of his exam results supporting my claim for disability benefits. So now we wait, again, for the decision to my appeal.

The Robertson Family Update

I'm a bit behind in posting, as much has been going on. There has been the recouperation from the failed chemo and a stomach bug (Yes, I actually had a normal medical problem.) that have kept me running slow. I have a couple of things to talk about so I'll use a couple of separate posts.

Our family recently enjoyed the company of both my Mom and my Godmother, Denise. They arrived the same day, with my Mom staying five days and my Godmother for ten. It went far too fast! First off, I want to share with you my pride in my mother traveling alone. It was a scary endeavor and I am so grateful that she was so motivated to do it. Because of her health and mine, I am particularly grateful for every minute with her. Denise has been my Mom's best friend from long before I was born. So the three of us getting to have that time together was important to us all.

Of course, both came bearing gifts for the boys. And my Mommy bought me a pair of Uggs. I had coveted them for so long and at last, they are mine. Craig was secretly hoping for Guitar Hero but it wasn't meant to be... Denise also brought me a terrific new lounge outfit. As you can imagine, this is my predominant wardrobe right now.

We were spoiled by the yummy lunches out and the homecooked meals in the evening. And their help with taking care of me and the boys gave Craig some much needed and deserved time off. For me, one of the best parts was just to have company, escpecially adult company. Sometimes I feel like I live in isolation.

They were here to enjoy the boys dressing up for a neighbor's Halloween Party. The Spiderman mask of Brennan's costume was way to small. Even after cutting the eye slots much larger, it still smooshed his eyes. So they watch as non-artistic me drew it on his face (Yes, with washable marker). They also particpated in pumpkin carving, the same way I did, by watching from the table as Craig, Jenny, John Paul, and Brennan did the work. Big kudos to Jenny who was stuck working on Brennan's, consisting of many circular parts.

The kids had also had a special date with Kathy Jones, our dear friend and Craig's coworker. She picked them up for a day at Greenbluff and searching for the perfect pumpkins. They were some rather unique ones that they brough home.

Denise and Craig took the boys trick-or-treating. Boy did they make out! Craig is set for awhile.

It was hard to say goodbye to both of them. I have been very lucky in life to have a loving mother, who has amazing stregth and determination, and a strong life-long realtionship with my Godmother, a very loving and kind woman herself.

I am including some pictures. These were happy days.

Tuesday, November 4, 2008

What The Boys Know-Some Answers to Your Questions

Many of you have inquired about how John Paul and Brennan are doing through all of this. My immediate answer is remarkably well. I am so proud of both of them, of who they are and how they handle their worlds. But I would also have to be truthful in saying that they both are struggling to make sense of it all.

Many of you know that John Paul, turning six in December, is incredibly in tune with his surroundings. Before school started, I had a brief conversation with him. Most importantly, I did not want him to learn that I had cancer again from a classmate, teacher, or parent. Clearly he would know, as well as others at school, that things are different in our family. I can't drive him to school. (Thank you again Steph!) We also are sending a month's supply of snacks at a time, rather than two each day in his backpack. Because we can't be certain each day where I will be, I want to make sure he never goes without. He is also participating in hot lunch, rather than sending him to school with a prepared meal. I feel an almost compulsive need to make sure that these types of things are taken care of. But to him, he may just notice that things are a bit different than some of his peers.

Anyways, I just explained that like when Mommy had cancer in her "boobs" and had to go through some things in order to get better, it is like that again, but in my blood. After reiterating to him that he can't catch these cancer germs, he was off to play football. I suppose it has gone more smoothly this time in the sense that he hasn't gone around announcing (at least that I know of....) to anyone and everyone that I don't have any boobs and that I don't have any hair because of chemo.

I have tried to gently bring the topic up on several occasions but he does not seem interested in talking about it. I have tried reading with him some age-appropriate books for children whose parents are battling cancer. No interest there, either.

But of course, we can see his own frustrations and fears as they surface in other behaviors. We have been reassured that this is very normal. But it just pisses me off that this has to be his normal.

Brennan, for the most part, is not ready to understand the concept of cancer. He, like John Paul, knows I am "sick" and need to rest alot. Brennan asks me almost every day if I am better yet. It is with a broken heart that I tell him "a little bit every day".

They have dealt with countless doctor visits, surgeries, procedures, drug therapies, and hospital visits. Both seem to accept the part they understand as just part of our world. In many ways I am grateful that they do not understand the odds I am fighting.

Brennan seems to allow his feelings out by being even more honery and really has pushed being defiant. Craig and I often have to balance what is normal for a three year old versus what is a result of his confusion with his world.

In summary, we have explained to our boys that Mommy is sick and that we are doing everything possible to make Mommy better. We have not discussed the transplant with them because unless I succeed in raising the money, there won't be one. So I'll cross that bridge when I come to it. Likewise, we have not discussed the possibility of me dying. They are too young to be forced to deal with that, at least until the day I run out of options.

I appreciate all the things that so many of you have done to help Brennan and John Paul through all of this. It helps me to know how loved they are.

Monday, November 3, 2008

Financial Resources-Some Answers to Your Questions

Some of you have been kind enough to suggest different avenues to pursue to seek financial resources. And many of you have asked if I have already tried other methods, ie. already established resources, to gain financial assistance. So I thought I would write a little about the avenues that I know of. But PLEASE continue to pass along any and all suggestions. Anything and everything helps!

First of all, I do have a great number of different organization websites, phone numbers, and names that I am contacting. Needless to say, it takes time to do this. If anyone wants to volunteer to help, just let me know!

Anyways, I am aware of many out there that have programs that can help. For example, there are is a travel reimbursement program, up to $500 per year. However it covers mileage reimbursement and airfare only. There is also a copay assistance program, where one can submit receipts for reimbursement. I am already participating in them. One does have to pay out-of-pocket first and then be reimbursed.

Some other programs are income-based, which we miss by a small margin. Other we miss by more. Sadly, we have talked about the benefits of getting divorced simply so I would qualify. But by this route I would also lose my health insurance and become very limited by the doctors I could see due to being on state and federal medical. Plus I could no longer live with my family to qualify for benefits as a single person.

I have many, many other programs to inquire about and some I already know to apply for. There are small grants available in some situations and I am hopeful to be able to tap into some. But the big picture, to the best of my knowledge, is that there is nowhere to access "big" money to close my gap. But rest assured that I will contact and research every last lead.

I am seeing, to my amazement, an incredible grass roots effort take place. Many of you have passed along my story and message to your distribution lists and groups in which you are involved. Thank you for accepting my challenge to do so. IT IS WORKING!

No More Chemo

Well, it's another restless night. I sleep in little spurts but never much at any one time. It's been awhile since I have written and much to say. It's been a busy time with my Mom and Godmother visiting, Halloween, and other going-ons. I will post later about all these good and fun things and include a pic or two. I also need to update the fundraising thermometer and tell you all about the many amazing things going on in that area. But good news deserves its own space.

I was recently hospitalized due to side-effects of the new chemo. I experienced severe swelling, which had it been left untreated, could have progressed to heart failure. So I am off the chemo and have been told that my only option left is the bone marrow transplant.

I declined the invitation to stay in the hospital and am trying to manage at home. I am now on oxygen 24/7 as there is not enough room in my blood due to it being congested by unhealthy cells (as a result of the leukemia) to allow enough oxygen to circulate to my organs. The cord to the machine is 50 feet long so I can pretty much get everwhere upstairs with it in. Then I have canisters in this neat jazzy carrying case for when I leave the house. And like the scarlet letter, I have a sign on my front door warning that oxygen is in use. Very cool and hip am I. It does seem to make me feel better and is doing wonders for my headaches. Who knew my head hurt so bad because it didn't have enough oxygen?!

I am taking diuretics to continue ridding my body of the excess fluid from the swelling. And potassium because it was already low and diuretics cause it to go lower. As many of you know, low potassium can lead to heart problems as well.

My thinking is that if I can figure out how to do this at home, that is my preference. But I did get a direct pass back into the hospital should I need it. I liken it to being a VIP.

My heart simply broke when the doctors told me that the medicines were over and that my only choice, and as soon as possible, is the transplant. I don't know exactly how to explain how I feel. Just sad and heartbroken. And scared.

I will try to see my regular oncologist today and see what she says. Just in case she has a secret miracle drug or button somewhere.

I am running out of time. And I am not done yet. I just want it all to go away.