Digging out of our Cancer disaster

$760 of $15,000 goal

Raised by 5 people in 1 month
Here's the bullet points of need. The story is below.
1. Pay off medical bills for Multiple Myeloma 
2. Move to our own house. 
3. Visit our children and granchildren as often as possible..
4. Replace our car, it has 130k on it with a dependable late model used car. 
5. Develop emergency funds, critical as we age.
6. We need to restore a sense of security and ability to life. Financially, we can not do that.
We are at our limits now. There isn't much more we can do to rectify our situation. Our need is critical so receiving funding sooner rather than later, is paramount.
January, 2015, I was diagnosed with an advanced, and then rare form of cancer, Multiple Myeloma . This is a blood cancer that causes bones, primarily big ones, thigh vertebra, shoulder blades to develop lesions, leaving holes in bones that resemble webs instead of solid bone. It does not stop there as it advances. Lesions can develop in any part of the body including the brain where I had several, fortunately, smaller than the others. I underwent radiation, 6 months of 3 times a week of chemotherapy before having a Bone marrow transplant  in June 2015.  I also lost 3-4 inches in height due to several vertabra collapsing because they were so eaten away. I was able to partially save 4 others with Khyphoplasty.  A procedure where the bones are basically filled with a cement. 
Fortunately, and somewhat serendipitously, we ended up at Huntsman Cancer Institute in Salt Lake City . Care has been excellent and driven as much by what we want as they think should be done. I say WE because having Cancer is a family disease as much as a personal one. Without them I am not sure where I would have ended up.
As one could imagine, life and living has drastically changed. I have always been active and throughout life been able to by hook or crook bootstrap myself up from whatever I faced. And enjoyed being able to do so and overcome obstacles as I faced them.
For the first time ever I can not do that. Life is now dictated by outside forces which I have not been able to figure out and provide financial security for myself and my wife, Deborah, the steadfast one. 
The Multiple Myeloma has never gone away completely. It is being held at bay by infusions and pills. Of which the pills can be almost as bad as the disease. 
Being able to visit our grandchildren in Tucson is very important to us. We only see our grand-children in Tucson when they can spare miles. Usually that's only enough for Deborah to go. All of us would like for us to see them more often as they grow up. 
Our medical bills are now being paid on a need to pay basis. We need to be able to pay the off before something else happens of we are making decisions based on money not medical care.
Our living situation causes incredible anxiety. The last thing we need is the insecurity of renting as we age. With a fixed income and rent so expensive as well as being subject to a landlords whims, security is non-existent, especially as my disease progresses. 
(see below)
I have 3 grandchildren, 12, 2, 5. Two live in Tucson AZ. One here in SLC. When I was first diagnosed I told the doctors all I wanted was to see them reach 18. Only time will tell. The average lifespan with Myeloma  is 4 years. Though everyone says they know people who are 10-12 years on after diagnosis. I currently receive infusions of Darzalex (daratumamab)  and take Pomalyst (polylidamide ). In the end it seems more a crap shoot than anything.
We live on SSI Disabilty. A very fixed income. Our landlord has raised our rent 150 in the last 6 months. And will again in a year. This is not sustainable for us in our position. We are now in the position of having NO additional income since I can not work. As well buying a house or moving to a better situation seems out of the question. To put it bluntly our options are nil.
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Finally recovered from my first trip in years. It's still takes longer fr my body to feel ok. My mind says GO. The body says Wait a minute! Here's a wonderful Father's Day card/photo my Grandkids in Tucson made. They always send the best gifts! As I mentioned before June is a big month. I have Father's Day, B'day - 62 - then my Bone Marrow Transplant B'day June 25th. 25th is a b'day cause the BMT basically wipes the slate clean and then your body has to rebuild. In fact I have had to go through the typical round of immunizations a baby goes thru cause my immune system is compromised. All of this is a bit weird reaching out for help. But we are at the point where income is less then outgo by about 100$/month. We have been paying off bills with co-pays at a very low amount and are now at the wall. With your help, in any amount you deem fit, we can work on wiping out co-pays so we can start preparing for the next crisis or to start preparing for living a more secure life into our older ages. Money is welcome but so are other contributions. I'm a photographer so camera equipment to replace my ancient gear - at least the body - would go a long way to being creative and keeping my mind off all this stuff. In that vein I have made contacts with the place we stayed to hang photos in the new buildings they are putting up. So I see your help as being a way to bridge where we are now to where we'd like to be: safe, secure, independent. Help if you can!
Shared Pain is Lessened. Shared Joy Increased.
Sam & Deborah
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June has become a big month for me now. I'm a Dad, so we have Fathers Day. My Birthday is June 20. Then my 2nd BDay - that's what the Huntsman nurses call the date of a BMT - is June 25, 2015 when I had a Bone Marrow Transplant for the Multiple Myeloma. It's all fun despite the reminder of my situation. There have been few updates recently. My Mother died some time back. We finally had her Memorial this last weekend with family gathered together. One factor delaying it was waiting for me to have time between Dr. visits, energy to handle 3-4 days of celebration. I did it but am still waiting for energy reserves to come back. I pretty much slept all day Monday & Tuesday to recuperate.
The medical co-pays have finally reached the point where I am borrowing from Peter to pay Paul. I had a severe right side neck issue where my shoulder blade was split by a lesion several months back. It was a 3-4 month episode of pain, immobility, and misery. Finally I had an injection which so far has kept it all at bay for now. The body pain was relieved. Financial? No. We just got the bill, 2700.00 for that episode. It doesn't really matter now whether they will accept payments or not cause the money has already been allocated for other payments! It's a vicious circle not conducive to low stress.
Since it's B'day month for me (I think B'days are one's most important holidays) send a gift to our fundraising! It will go a long way to hacking away at these bills.
This is also about renewing creativity which was taken from us through all this. So it's not only about money. I am working at renewing my photography efforts. I have an 11 yr old Olympus 510 camera. It's a 4/3 camera. Works okay but is very slow for what I try and do. If someone has a newer body they could donate - my lenses will have to do - that would be as important as anything.
So, as always, a little goes a long way! Help where and how you can!

Shared Pain is Lessened. Shared Joy Increased.
Thank you
Sam & Deborah
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update 6-4-18
infusion day

Another update for the record.
One aspect of Cancer is that it infiltrates your life as well as body. It's a job. A crappy one at that. Nothing I do is done without taking it into account. My kids and wife have been very good about making sure I don't do something stupid. I still find myself thinking as an 18 year old and considering doing things accordingly. Without their getting on my case I likely would have broken a few bones, or worse.

Today is infusion day. I'm on a new treatment using daratumamab. It's been available for about 16 months. It appears to work though i feel like I have the flu for a few days afterwards. i also start on pomalyst and dexamethasone. Dex is taken the first 2 days of every week. it's a steroid and kicks my ass. feels like ants under the skin. Staying still and concentrating is out the window. So being in chemo for is the order of the day.
This infusion thing will last till my dying days. This alone severely restricts our options. One reason we moved here was cause we wanted to enjoy seasons a free living in the desert for 32 years, as well as travel. it also meant i was closer to photography opportunities if they panned out.

The real chemo kicker is the Pomalyst which i take 3 weeks out of 4 along with the infusion. Some of you may be old enough to remember Thalidomide? t was used in the late 50s for birth control. Problem was it caused severe birth defects and was banned. As it turns out it has anti Cancer properties so several derivatives of it are used in chemo. Side effects are kickers. No ambition. No appetite. Mindlessness. Extreme fatigue. Stomach issues. It also cause blood clots which I had and scared the heck out of me and required hospitalization. Then 6 months of shots in the stomach.
Upshot is I get about 2 out of 4 weeks in which I am present. There are lower does but since i am still sick I have to stick with a higher dose.
To stress the reason for this Fund Me, as I said before given my Cancer and our fixed income,its a long term cause. Donations can relieve financial stress of insurance costs, travel costs allowing us to concentrate on having a life not totally ruled by Cancer. Perhaps there is even someone who can help with housing.
Please donate as you can. It's all to the good!

Shared Pain is Lessened. Share Joy Increased.
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In case I can't get to an Update, here's a bit of beauty in the meantime.
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Read a Previous Update

$760 of $15,000 goal

Raised by 5 people in 1 month
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