GRRRRRRRRRRRRR!!!!!

DUMBASSMy heart is kind of breaking right now.  I now understand how so many cancer patients feel when the system fails them.  We have been incredibly fortunate up until now with our caregivers, time lines and insurance coverage.  Suddenly it seems that has all gone to shit!

It’s been weeks since our first visit to Shands and two months since Steven’s last chemotherapy treatment.  In the interim, his cancer is gaining strength and because of the most bizarre series of circumstances that include the Christmas holidays, the yearly Lymphoma convention, our doctor’s annual mission to Haiti and pure bad luck, Steven has become a hot mess.

Finally, on Monday night we got a call from Dr. Sprawls.  For whatever reason, all the other doctorsI'L TAKE CARE OF YOU in his practice who were covering for him during his scheduled absence, chose to ignore Steven’s calls and updated messages concerning his plummet into really bad shape,  So that particular call was a ray of light.  Dr. Sprawls said he was going to get Steven into the hospital for the first round of RICE chemo, before our trip on February 2 back to the Bone Marrow Transplant specialist in Gainesville.  Dr. Sprawls decision was the first time in a long time someone has finally taken the steps to relieve Steven’s symptoms and push back the cancer to a more manageable place.  I was SOOOO excited. I finally felt like we were back on track for proactive treatment of Steven’s pain and suffering.

IMG_0920

ANOTHER NIGHT WITH STEVEN PASSING OUT FRO THE EXERTION OF GETTING TO THE BATHROOM!

I know that sounds weird, but Steven is way past my care givings abilities.  I’m good to a point, but I’m not a trained professional and once he started passing out again, not from chemo side effects, but from the cancer itself, I no longer felt knowledgeable enough to be trying to figure out how to keep him safe, comfortable and without pain.  And I’m not in the physical shape to be lifting and toting him from room to room.  And the nausea just adds to the daily trips to and from that most excellent comfort height toilet…something that everyone should invest in!  So the idea that he would go to a place where there was a whole staff to take care of him, options for elimination that don’t involve maneuvering to the bathroom with blood pressure of 90/50 and the meds that would help fight the current symptoms mixed with the industrial strength pain killers that you can only get through and IV drip, I was thrilled!

But Tuesday came and there was nothing.  On Wednesday the hospital told us they had to order the chemo drugs because they don’t stock those.  Today is Thursday and I took the day off from work to get him settled.  It was early afternoon when QUIT YOUR BITCHINwe finally learned that the 3 days of continual chemo could not start today because there is no weekend chemo nurse to oversee his treatment.  Seriously?  There are nurses who specialize in chemotherapy?  But they only work during the week?  And a hospital won’t call one in for the weekend, even when someone is in dire need?  Does that sound like healthcare to you?  I work in a business where there are no “real” emergencies!  Yet we get crap all the time from medical people because we don’t see clients on the weekend.  But NO ONE DIES IN DESIGN CENTERS!  Maybe if one of those high faulutin’ morons worked a weekend shift to care for a patient who actually could DIE, they might be able to squeeze in a weekday off to come to my place of business!

BEING A LADYegSo now we wait…and I worry that something will happen on my watch.  We’ll go to Gainesville on Monday and then check Steven into the hospital on Tuesday.  So another weekend where I watch him suffer without being able to help him feel better.

I’m upset, pissed, scared, angry and thankful that this is the first time we’ve had to navigate a cluster like this one!

.

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Cancer Stinks!

prison wall calendarHere’s the update.  We have been in a “holding pattern” since January 12.  A few days after our appointment at Shands, Steven got a call booking him the next available appointment with the Bone Marrow Transplant Specialist.   Unfortunately, the “next available” is February 2.  Happy Groundhog Day!  I pleaded with Steven to call back to see if he could get in sooner but he just kept telling me to have patience.  Luckily, the letter with the forms that came for this appointment were intercepted by Lucy Mae Harp, the counter surfing puppy who will chew up anything she whippet eating paper towelsees a human deem as important.  So when Steven called to request that the forms be sent again, he gently reminded them that he would be willing to arrive on a moment’s notice if someone canceled an appointment.  The less than enthusiastic person on the other end of the phone told him she already had that noted, however no one really makes an appointment with this guy just for shits and giggles. (My words, not hers).  The end game is that everybody is in dire straits when their on this guy’s calendar, so cancellations are highly unlikely.

Which brings me to our holding pattern.  My life feels like prison, where each day is just an “X” on the calendar while we wait. And it is torture.  I’m trying my best to remain calm but I’m pretty sure I’m not fooling anyone!  I’m exhausted.

scrubbing bubblesI wake up in the middle of the night and I swear I can hear the cancer growing in Steven’s body.  Not for nuthin’ but for me, I hear those freakin’ “Scrubbing Bubbles” sounds from that bathroom cleaner commercial.  I have no idea where that came from, but I swear to you, I hear that sound in the dark of night!  And then in the morning, his neck looks bigger each day.  I hate to admit that my pretty boy husband looks like Jabba the Hut, so let’s just pretend I didn’t add that to this post!

STEVEN - NOVEMBER 2014 WITH NORMAL HAIR AND A NORMAL NECK

STEVEN – NOVEMBER 2014 WITH NORMAL HAIR AND A NORMAL NECK

STEVEN YESTERDAY WITH KRAMER HAIR AND BULLFROG FOOTBALL PLAYER NECK

STEVEN YESTERDAY WITH KRAMER HAIR AND BULLFROG FOOTBALL PLAYER NECK

TIME LAPSE – 2 MONTHS

HE’S STILL TRYING TO SMILE BUT IN 2 MONTHS HE’S TAKEN A LOT OF ABUSE FROM THE INSIDE OF HIS BODY TO THE OUT.

Which brings me to the “cancer stinks” part of my rant.  While we were in our meeting with Dr. Lynch on January 12, we talked about many things.  One little theory which I mentioned to him was a subject for which I want credit.  I told him that I figured out that I could monitor Steven’s cancer by paying attention to our pets’ dog lick habits.  When his cancer starts becoming a problem, meaning growing, the dogs start constantly licking his pillows.  There has got to be something in cancer cranial juice!

MARITZA HAVING A PILLOW SNACK

MARITZA HAVING A PILLOW SNACK

When Steven was diagnosed 10 years ago, we had 2 Cocker Spaniels who would lick his pillow like it was a ham bone.  I even documented in in my post back in 2011 called HEAD GRAVY.  Zoey and Maritza have been pillow licking constantly since the summer, and when we got the puppy, she just went right for his head.  So even though I told Dr. Lynch he should get a few of his grad students on the job of researching this theory, I want to go on record as being the one to get the ball rolling.  I guess I still need applause!

So with all that being said, I can now tell what the dogs are going after.  Cancer STINKS!  And now even I can smell it.  We are changing the sheets and pillowcases more frequently than a 5 star hotel.  And it’s scaring the crap out of me.  If my husband needed chemo in a big way when the dogs were sensing it, WTF must it be like and how bad must it be if I can smell it?  I’m not trying to be gross, really!  It’s not that Steven isn’t clean, because even though he doesn’t have the energy to stand in the shower, we’ve put one of those pathetic nursing home seats in there so he can just sit under the pounding water like he’s a jalopy in a car wash.  So he’s clean.  And if his energy is so low that he can’t even stand in the shower, you’ve got to know that he’s not working up a sweat doing home improvement projects.  As a matter of fact, his only exercise is walking to the refrigerator to get more ice water.  And if he’s feeling particularly energetic, he’ll grab something for lunch.

But at night he sweats.  Mostly just his head.  It’s like the cancer is trying to let off steam through his hair follicles.  And in the morning, his whole side of the be smells like a yuk I can’t even describe.  It’s like a metallic-y, polyester-y formaldehyde, subway grate steamed sauerkraut burp smell that just overtakes the atmosphere.  And I suppose that’s quite yummy to the creatures of God’s earth who like to lick their own butts.  But to me, in every way possible, CANCER STINKS!

Is there anyone one else out there who smells it too?

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Here We Go!

Cancer Hospital exterior Today was the day!  Steven finally scored the appointment we have been awaiting.  It’s too bad it had to be at 8 AM, but we were not going to miss it no matter what.  So our alarm went off at the butt crack of dawn, which is a very dark time.  We managed to get out of the house by 4:45 AM so we could drive the 179 miles to Gainesville, FL to meet with Dr. Lynch.

It was an eerily easy trip.  There wasn’t much traffic but there was enough fog to make most of the drive seem like driving into a dream.  We listened to talk radio until the station I prefer started to get that static-y sound that starts when you’re going out of range.  And then we drove in silence.  Not in a bad way, just in a way that is really odd for us.  And then we were there…on time.

It looked the same as it did the last time we saw Dr. Lynch, 10 years ago.  It was all coming back to me, only this time I was noticing other things.  I noticed that I should put Steven’s handicap placard in my car so I can park closer next time I bring him.  I noticed that last time I didn’t think there would be a “next time.”  Whereas this time I hope there are a LOT of “next times.”  And I noticed that as we walked into the building, last time we were nervous, too.

The doctor was the same as I remember too.  He’s got a great way about him that makes you feel like IMG_0914you’ve known him for years.  And, when he talks, you listen – like Smith Barney.  (Sorry kids, I’m not updating my references for you.  Google John Houseman).  It didn’t dawn on me until today that Shands is a teaching hospital and Dr. Lynch also teaches at University of Florida.  I should have picked that up 10 years ago when I first noticed the Gator necktie.  Nevertheless, I realized that he makes everything so clear because he’s used to teaching.  It’s not Cancer for Dummies by any means, but what he says is abundantly clear, even with the medical terms.  So whether you are a patient or a student, you’ll get the picture.

The only downside to Dr. Lynch is that he tells you everything…even the crap you don’t want to hear!  So he touched on the possibility that this whole mess could end badly.   He did present it in a compassionate and honest way.  He waited for us to acknowledge that we understood and then he quickly moved on to the other options that could end great.  We’re picking on of those, by the way, because I won’t even think of any other option.  It’s not like I don’t know the reality of our situation, because I certainly do!  I just don’t like facing bad outcomes before I have to.

voices in my head signThroughout my life I’ve been aware of all the bad outcomes that could happen to me or the people I love.  But if I don’t need to face it today,  I neatly file that shit, using the Dewey Decimal System,  in a card catalog in the back of my brain.  I always know where it is and can grab a card and glance at it when I have to…and then put it right back where it belongs…out of sight.  Because I’ve learned that most of the crap that’s gone wrong around me wasn’t even in the card catalog.  And most of what’s in the card catalog has never happened.  And the few bad outcomes that I saw coming were going to happen whether or not I made myself crazy dwelling in the dark when I should be sleeping! So to be kinda Zen about it, we’ve just decided to be in the moment.  OMMMMMMMMM…

My Water Garden / Meditation Spot

My Water Garden / Meditation Spot

So, we move forward with some nasty-ass chemotherapy that’s going to make my handsome husband a skinny, bald, pasty guy for a while.  In the best case scenario, that will kill all the cancer that didn’t take off for the holidays and kept growing while the world drank egg nog.  And then we’ll do whatever we have to do next to make the bad stuff in his body start acting right by a pseudo in vitro bone marrow transplant that might be his own cleaned up bone marrow, or marrow from some donor.  I don’t even want to go there yet.  That next step is yet to be determined but I’m counting on the doctors to be The Cancer Whisperers, and I’m counting on them to make cancer to lay down and play dead.  And I’m counting on a really good outcome, where I get jewelry again at the end of it.

AND I’M COUNTING ON YOUR PRAYERS!

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Happy New Year

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2015 is here and I’m not taking any chances.  As I type, there is a huge pot of Hoppin’ John simmering on my range.  For all my Yankee friends, I don’t expect you to know what Hoppin’ John is.  I learned how to make it a few years back after a conversation with an old southern lady who sold Real Estate out of the same office as Steven.  She and Steven had and in-depth conversation about all things collard, and grits and pork-ish.  I was intrigued.  In an effort to be a good sport, I decided to try a few recipes for my Kentucky-bred spouse.

Turns out I’m a pretty good Southern Living cook!  After my Hoppin’ John venture was determined a success, I used to cook it occasionally in the cooler months.  And then about 5 or 6 years ago, someone told me that in the south, eating black-eyed peas (the main ingredient in this recipe) on New Year’s Day, would bring luck throughout the coming year.  So then it became a once a year treat for January 1.  Until last year…when I was too busy and too stressed out to plan ahead and have the ingredients on hand.  So I skipped it.

In the beginning of last year, I had a bat-crap-crazy manager whose main focus was to get me fired.  She almost broke me and I almost quit.  Luckily, I sucked up the humiliation for the sole reason of maintaining our health insurance.  It was miserable for me until spring when her managers, who had been planning on moving her out of power for almost a year, finally dropped the bomb.  She was gone to another department where she couldn’t torment me daily, but it’s taken until just recently where I feel normal again.

There were lots of other unpleasant situations in 2014 which included Zoey’s little benign doggy tumor, the breaks going out in Steven’s car while he was driving home on the interstate from a PET scan, and of course culminating in the recent chemotherapy that didn’t work and the inability to get scheduled for the beginning steps of this bone marrow transplant fiasco.  Can I chalk this all up to a lack of Hoppin’ John last January 1?  Hell no…or probably not…or maybe not all of it.  But whatever, the fact is that this meal tastes great and it doesn’t hurt to eat a little insurance!

So if you have the calories to spare, and want the extra luck, here is the recipe.  And don’t forget the corn bread!

HOPPIN’ JOHNIMG_0888

1 POUND DRIED BLACK-EYED PEAS
5 STRIPS BACON, CHOPPED
1 LARGE ONION, CHOPPED
2 CLOVES GARLIC, MINCED
1 POUND COOKED HAM, CUBED SMALL
1 HAM BONE OR HAM HOCKS (EWWW, GROSS. BUT NECESSARY)
BLACK PEPPER TO TASTE
1/4 TSP. RED PEPPER FLAKES
2 – 5 SHOTS TABASCO SAUCE (I USE 5 FOR THE KICK)

Pick over peas for stones, rinse and cover peas with cold water. Bring to a boil, boil 1 minute, remove and cover peas. Let sit for 1 hour. Drain & rinse. Let sit in colander.

In a large pot, saute bacon until golden brown to release fat, add onions and garlic, and saute until onion is softened.

Add the peas to pork and onion mix along with the ham, ham bone and seasonings, adding enough water to cover. Bring to a simmer, cover and simmer gently until peas are tender but not mushy. (1 – 2 hours) Taste for seasoning and adjust.

Cook rice separately. Mound rice in bowl and cover with peas and serve with warm corn bread. Serves 6-8 on NEW YEAR’S DAY TO BRING GOOD LUCK.

There is a lot I’m not sure about these days.  But there are a few things that I still know to be true.  First, IMG_0889Steven and I are a great team.  We’re both a little scared about the bone marrow transplant.  But we know we’re going to get through it because we’re incredibly strong when we work together.  And that was reinforced too clearly just a few hours ago.  While we were watching a TV Steven loudly blurted, “Oh, God!” for no apparent reason.  When I asked him what was wrong he said, “feel this.”  And he put my hand on his neck.  He has a walnut sized lump there.  I asked, “Is that a tumor?”  He said, “Yes.  I always wondered what the doctor was feeling around for at exams.”  Surprisingly to both of us, he wasn’t phased, and neither was I.  We accept tumors as part of our life.  And the reality that we could take it in stride, go back to watching TV and not flip out just proves to me that just the aroma of the Hoppin’ John is making feel like it’s all going to be fine!

HAPPY NEW YEAR TO YOU ALL.

XOXO ALEXANDRA & TUMOR BOY

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