Extreme Makeover - Cancer Edition

$7,575 of $75,000 goal

Raised by 52 people in 50 months
We'd rather eat worms than ask for help.  Steven and I pride ourselves on being private and self sufficient.  During our 18 years of marriage, the last 10 have had cancer as an uninvited guest in our home.  And we've still been able to manage through hurricanes, hemorrhoids, and the horror of realizing that we're no longer young!

Steven has had enough chemotherapy, radiation and assorted chemically enhanced tests to make his pee glow in the dark!  Keeping on top of his cancerous cooties has also allowed us to lock our unwelcomed visitor in the guest room numerous times.  Word to the wise - use better locks than we did, because six months ago the door burst open with force.  And this time the cancer is taking us down Bone Marrow Transplant Lane.

I have a job and decent insurance...or at least "decent" for this day and age.  Unfortunately I have to travel 55 miles each way to get to and from that job.  And, I have to keep going every day to hold on to that dandy insurance.  Apparently, that's the way the real world work force works!  And BeeTee Dubs boys & girls,  insurance isn't what it used to be!  In 2004 Steven went into the hospital and my co-pay was $150.  Last week it cost $2500 just to get him in the door!  Luckily, I checked him out during a Florida thunderstorm that was so torrential that no one in a suit from billing wanted escort us to the car, so we're just waiting for the balance of the bill to show up!

Now, I'm suddenly finding out about all the things that aren't covered.  When my company laid me off in 2012 for 7 months, that re-set my start date to October 2012.  Even though I've been with them for over 12 years, I lost my seniority and I don't have a lot of paid time off!   All the costs involved in getting a bone marrow transplant in a city that is 3 hours from our home are adding up to be a lot more than I expected.  And many of the costs are on me.  I'm not going to be able make it even if I sell both my kidneys.  (PS-Nobody wants Steven's kidneys any more)

It broke my heart to have to find new homes for our canine daughters but I just couldn't handle them, Steven, the commute and the cost.  Everyone says it was the right thing to do, but I still can't look at pix of them without tearing up! 

So the  bottom line is that we're asking for help.  Since our insurance isn't going to cover someone else giving him the care that I can give him, I'm going to have to take some unpaid time off from work.  We're also going to have to pay our portion of a lot of expensive treatment.  And I'll be damned if I'm going to camp out in a tent next to the interstate when we have to stay in Gainesville, FL for a month.  Camping may be free but in Gainesville, "Go Gaters" is not just a team thing!

Bottom line? Steven needs me and I need you.  And we're both worth it for the quirkiness of what we add to the planet!

Check out my blog if you want to get to know us better!
The World According to Alexandra
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We are home and digging it after almost 2 months of being semi-separated. It was hard for both of us each time I had to head south from Shands to go back to work. I never really did go home for very long. Half the time I just dumped my sorry butt on Alexis and Matt so I wouldn't have to drive home to an empty house. Their house is about 10 minutes away from my Orlando design center, so it saved wear and tear on my aching ass-ilary region. It also gave me some company so I wouldn't dwell on Steven being alone in the hospital feeling like crap and our former Whippet daughters now snuggling up to new moms.

We were released from Shands last Monday with the latest plan being weekly trips to the out-patient BMT clinic. So, we drive back up to Gainesville the day after tomorrow for treatment. And yes, I already know we'll be there for treatment and for the day. After the last few months of watching how it's done, I can tell that Steven will need infusions of platelets (2-4 hours worth... and those are needed STAT), Potassium (definitely 2 hours worth) probably a little Magnesium (another 2 hours) and maybe some blood (I never got to that course in my faux-medical school training so I'm not sure how many bags!) So with a 10:30 am appointment, we'll be there until at least 5 PM! But it's worth it to be able to sleep in our own bed!

What I didn't really figure is how much I did for Steven when we were in Hope Lodge. Since we were always together, I didn't take into account the care giving that fell on me. We were us and I was just doing what I normally do. Unfortunately, when I leave Steven to go to work now, there's no one here to get him lunch, make sure he hydrates, remind him to take his meds and provide the normal nagging that caregivers spew. So this week ended up on shaky ground.

Steven's platelets showed up as 19 on the blood test in Dr. Sprawls' office on Thursday. In Shands out-patient, he'd get infused platelets at 21. The Potassium came in at 2.5, and Shands infuses at 2.8 so I'm bringing a book to Gainesville for Monday...I'm gonna have time to kill! And I'm also making a plan for leaving pre-plated food and serving sized beverages in the frig nest week. Steven was too tired to get up and assemble lunch so he just did without eating. Not really good for keeping growing new cells!

So here's the real problem. I ended up taking another day off yesterday. Dr. Sprawls called Steven after his blood test and said he needed to get a Neupogen shot to help boost his counts. By Friday, my big man was totally down to empty and couldn't get himself to his truck, much less drive to Space Coast Cancer Center. So I took him, but I could also see that he was in no shape to be left alone, so I called Tracy and dumped my client on her so I could stay with him when we got home.

Even though I don't want to have to keep doing that kind of thing to Tracy, I do see a little more of that in our future. Until we can get to monthly visits at Shands instead of weekly visits, I think these unexpected puny days are going to keep coming up, and I'll just have to stay home to do a little care giving. The problem is that I hoped we'd start getting back to being able to survive on my paychecks by now. Clearly, I was WAY off base. Look at my paycheck from yesterday. Apparently you have to show up at work in order to be paid! This is a check for the last 2 weeks we were in Gainesville. I took my last accrued sick day and last 2 vacation days added to the July 4th holiday pay. I lumped them all together so I wouldn't have to write a personal check to the company for my insurance deduction.

I'm embarrassed to ask again but if you would please use your social media contacts with a little plea for help, we'd be forever grateful. I don't think things will be back to normal around here for another couple of months...wait - what? Who am I kidding? It's never been normal around here! Lets just say self sufficient! Could you please help until we're back to self sufficient?
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It's been a while since I updated so if you haven't been following me on Facebook or my blog http://www.theworldaccordingtoalexandra.com here's the skinny:
Steven had his stem cell transplant on May 27. He's doing pretty well considering all the chemotherapy treatments he's had in the past 10 years. I think he's up to almost 50, and trust me that is A LOT of poison that DIDN"T kill him! He's a little bummed that most of the people that came in with him are already checked out. My little overachiever doesn't take that stuff very well!

But here is a fun Steven story that shows the power of positive thinking, and the effect of a driver on the unprepared caregivers of the world. In this story, Steven will play the part of the ball-bustin' driver, and the staff here at Shands will all be part of the caring prey!

Steven decided that he would be released from Shands on Friday. It didn't happen and everyday since has been a testament to his patience. However, he finally told me last night that today would be the day. I told him that was impossible, but he pretended he was asleep and didn't hear me. From the moment he was awakened for his morning meds, he's been singing the "I'm getting out of here" refrain. His nurse finally broke it to him, and I confirmed, that there was no way they were going to unhook him from all the IVs and let him walk out today.

So he decided he'd leave tomorrow. He told his nurse...numerous times. When the PA came in, he didn't answer any of her questions without, "...and that's why I need to get out tomorrow." He told the PCA the same, and housekeeping, and the Gastro doc who stopped in to check him, and his nurse...again. After an hour of the Steven Harp treatment, his nurse Catherine came in and told him that Dr. Moreb said she could remove his IVs to see how he does on his own.

Even though I could see that Steven was mind-melding the staff into submission, I decided to forego the rest of the floor show to go run errands. I bumped into his doctor in the hall who said, "I hear he's getting out tomorrow."!!!! Talk about willing something! Yikes!

So tomorrow we'll be out. That's the really good news. The kinda bad news is that we may not have a room in Hope Lodge. That was one of my stops during errands and I found out that because we've had a 5 day delay in release, they've only got 1 room left for tomorrow and 3 people on the list to get in. So we may be running up a hotel tab that was totally unexpected.

Any help would be extremely appreciated. I know we'll be in outpatient care for at least a week, and if the rest of his recovery continues at this slower rate, it could be more. I'm here, not at work, and I wouldn't have it any other way. Luckily, when I'm not home, I don't see the mail...so I don't see the bills! Call me and Ostrich, I'm okay with that!
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I have been trying my best to document the steps we're going through to get us to the Bone Marrow Transplant (BMT) or Stem Cell Transplant, which is another description of the same thing. Did you know that: If not, consider yourself learned. If you want to learn even more, but in layman's terms...or even better in Alexandra-speak, check it all out on my blog:

One week from today we'll be back in Gainesville getting ready to begin the final steps in the transplant process. We expect it to be a challenge, but we are up for it! We just need a little more help from y'all! It figures that my paycheck would get messed up on the week that I barely put in any hours! I was only there 2 days out of 10. But I just have to believe that it will be OK. Divine intervention has saved us many times, and I have the faith to close my eyes and fall back, knowing that I will be caught!

Steven just won’t get that paper route I’ve been suggesting. So as I continue my entertaining writing projects about our adventures with Cancer, we’d be so very grateful if you’d drop a donation in the kitty. I kinda feel like a panhandler, but my company’s plan for personal emergencies is “Don’t Have One!” So…I’m gonna do whatever I have to do to keep my husband around. After all, I just got him house broken!
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We've finally begun the process of building a new Steven from the bone marrow out! We're at Shands Cancer Hospital in Gainesville (Go Gators...it's mandatory to add that whenever the city name is used). Today started out with the usual blood tests which are piece of cake for Steven because the nurses access his port which is just like a tap in a keg.

But not so much for the bone marrow biopsy. He's had them before but he's always been put out for the procedure. Today he was awake. Thankfully, our handsome PA, Ethan, offered him an Atavan cocktail before the hijinks ensued. Love this pic of the extremely relaxed and unworried Steven.

We capped off the day with a 3 hour meeting with a really lovely case worker who shared her story of a bone marrow transplant 11 years ago here at Shands. In addition to giving us a lot of good information, she was very busy taking a lot of notes to help report back to the mothership on our competency as a transplant team, I think we both behaved pretty well and no we just have to wait for all the test results! More to come tomorrow!
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$7,575 of $75,000 goal

Raised by 52 people in 50 months
Created February 8, 2015
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David Woods
43 months ago

Always in my prayers, Love You Both!

44 months ago
Suzie Lalone
44 months ago (Offline Donation)
The Mahon's
45 months ago


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