…And Life Goes On

Cancer has been interrupting our lives for a long time, but life goes on around us as if we were in our daily routine. It’s a shame that we have had to miss a lot of family events. A neice graduated college, a nephew got his MBA, numerous birthdays, special events and holidays have passed and Steven and I have missed them all. We can both see the really bright light at the end of this tunnel, and we can see that it’s getting close so we’re trying to be patient, but it’s hard.

We miss our home, our stuff, our way of doing things. We miss making out own plans rather than having medical appointments determine our day. I might even miss my job…wait…what?  No, I just miss my design center partner.  She’s a kindred spirit so I miss our chats.  But most of all, I miss family life.

 On Fathers Day this year there wasn’t any celebration. Steven wasn’t up for guests because he was being prepped for a colonoscopy, so that wasn’t very festive. Luckily, we had a reprieve on Mothers Day where we were between chemotherapy and apheresis, so we were home. And as a combined Parents Day celebration, Alexis and Matt came to our house and made waffles and a frittata breakfast spread for us so we wouldn’t have to be out amongst the germy public.

  It meant a lot to both of us because it was the perfect send off to begin our BMT adventure.

We both took the memories of that day with us as that bright spot we could revisit on the less fun days that we have weathered during this experience. The only memento that Steven packed was an old Fathers Day gift that Alexis gave him years ago. That was his little bit of home.

 As for me, I’ve just been wearing the awesome charm necklace that was my Mothers Day gift this year. It holds fond memories of the first vacation we took with Steven to Pineapple Cottge in the Abacos. The deck of cards is a reminder of our awesome college graduation trip to Vegas for Alexis after Steven crushed Lymphoma the very first  time…and that’s also the reason for the green ribbon. The cross shows the faith we’ve had that God is watching over us and the rest are pretty self explanitory.

 Oh, and the December birth stone is mine, too. Wouldn’t it be great to share the same day as my first grand baby!  It could happen!

It’s Time To Stop Fighting It

voices in my head signNo matter how old you get, or how much stuff you think you know, there are a few little traps that still snag us.  Steven and I both know that enjoying life to the fullest really depends on living in the moment.  As I key those words, I’m realizing that I suddenly sound like one of those yoga pant-wearing, “Nameste” quoting Mellow McMellow nuts…and I kinda want to punch myself in the “OMMMMM.”  But if I dig down deep into my yoga pants, I can see where we’ve been going wrong here in Gainesville.

Cancer is definitely not something you should sit back and enjoy.  Neither is chemotherapy nor is the aftermath of side effects.  (As far as I can see, the only really good thing is the automatic weight loss.  It’s a fat chick’s dream, but no matter how thin you are, it’s hard to rock the bald look!)  Back on point, once a treatment plan has been determined and everyone is on board for the ride, it’s imperative to ride that prancing pony with all the enthusiasm you can muster.  I say that as the voice of experience.  Steven’s saying is, “If you’re gonna be a bear, be a grizzly.”

Being an expert on making plans, lists and schedules, Steven can be a handful when anything seems to be at a stand still.  I take a little longer to lose patience with a gridlock, but I’m not THAT far behind him.  Consequently, I think we’ve both been driving the Shands’ doctors and nurses crazy.  When we were on the “other side” (In-Patient wing of the BMT floor) Steven couldn’t wait until his numbers recovered enough to get out.  He kept telling the doctors and nurses that once he got to go to Hope Lodge, he’d start getting better faster.  On the other hand, they already knew that he would get better and better every day…that was kind of the point of this whole adventure.  But, they didn’t want to let him go until they knew he wouldn’t fall on head, go into cardiac arrest or just simply drop dead in his sleep.  In retrospect, all good reasons for their hesitancy to discharge.

In reality, Steven has gotten better and better every day.  I’m doing a fine job of nursing him at our home away from home.  But after about 2 days at the Lodge, he started with his push to go to our home-home.  Even I was beginning to think he sounded like a broken record.  (“broken record” is an idiom, kids.  Google it)  But no matter how hard he has pushed, the docs have pushed back…or at least politely and gently fended him off.

So here’s the deal.  The chemo that Steven had in preparation for the transplant was very hard on his body.  His system is trying to recover, but over the years he’s had a lot of different chemo drugs that all have a tendency to screw up the way his body is supposed to work.  So his levels show up really wonky on his daily blood tests.  Where it gets a little blurry is that in regular life Steven doesn’t feel really bad, just utterly and absolutely tired.  So from his point of view, he could sleep at home.  From the doctor’s point of view, they don’t want to sign off on sending him home until they’re sure he’s stable according to the levels in his blood.  And it’s taken all week for both of us to accept that the doctors are going to trump us every time.

Yesterday we finally decided to stop fighting the medical professionals.  It’s hard to believe that it’s taken this long, but that’s how we roll.  So today we sit again in the chemo room.  The usual on the menu for him is IV fluids and potassium.  He’s in a circular holding pattern that the docs have not been able to break.  He had that really bad diarrhea, (you can re-read that post if diarrhea is your thing) which made him really dehydrated, which caused a low level of potassium which affected his blood pressure.  In order for us to go home, we have to get Steven’s potassium level up.  He’s fine if he gets it in an IV infusion., which means we have to be here.  If we want to go home, he has to take potassium supplements orally.  If he takes the pills, it gives him diarrhea and yada, yada, yada…we’re still here.

So I just got an appointment card with visits for Saturday, Sunday and Monday.  Which means we’re not going home this weekend.  We’re not even sure if we’ll be going home next week.  At this point, I just want to be home before December!  We have good reason to be festive and thankful for the holidays.  And of course, we have another birthday to celebrate!

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widgetTHIS IS IT!  WE’RE WALLOWING AT THE HOME STRETCH! Unfortunately, we don’t know when Steven will be released from Shands out-patient treatment or how long we’ll be at Hope Lodge. What that means is that I don’t know how much time I’ll be away from work without pay. I’ve only got 2 sick days and 1/2 a vacation day left and our bills still keep coming! If you think you’d like to help us, we’d really appreciate it. Visit our GO FUND ME page and drop some kibble in the kitty if you have some to spare.

I’m Happy to Say, “My Husband is a Pain in the Ass!”

DUMBASSThat’s right!  I said it!  Steven is a pain in the ass!  He’s pissy and needy and demanding.  He’s driving me crazy and I think that’s AWESOME!  It means he’s getting better!  Sick people don’t generate these feelings in normal people…or even cranky, bitchy people like me!  Even WE feel empathy for sickies, we feel sorry for them, we feel caring towards them.  “Well people” exhibiting the same behavior are a pain in the ass.

Steven’s blood pressure is still unbelievably low.  In clinic this morning, he tested at 71/53.  And that was after walking to the front entrance of the hospital in 88 Blood Pressuredegree weather and then having me wheel chair him up to the 7th floor…which may or may not have involved a minor crash into the elevator wall, a close call in almost knocking over an industrial trash can and parallel parking job that nearly crushed another patient.  But even after all that, which by the way made him a little snippy, low blood pressure comes with the common-sense safety precaution of monitoring his every move.  Only now that he’s back on the outside where reality involves gravity, there are moves that he thinks he can make…but probably can’t.  Unfortunately, if anything bad happens where gravity introduces his bald head to the rough concrete, it’ll be on my watch…it’ll go on my permanent record.  So it’s safer and will make me look better if I just wait on him…and damn, he wants a lot!

I need my charger, I need my meds, I need something to drink, I need to go to the bathroom, I need to take a shower, I need to eat, I need, I need, I need.  Do you know what I need?  I need him to shut his pie hole and let me collect my thoughts.  Yesterday he was in a safe bed with everything at everyone’s fingertips.  If he needed help there was a nurse who was only caring for him and the guy next door.  Granted it was a 12 hour shift of constant care, but she didn’t have laundry or errands or calls from work, the insurance company or AT&T.  She was already AT work and also had a PCA to help her if both patients needed her at the same time.  And there were about 4 techs running around assisting the nurses and PCAs.  And they were all in a goddamned hospital where everything was set up for the ease of all of those rat bastards.

MOANING IN BEDNow it’s just me, trying to navigate a glorified hotel room, a regular bathroom and an average mid-sized SUV to cater to his every need.  And, by the way, I still have that arthritic toe (read my 2nd post ever – My Guide To Surviving Cancer) so I’ve got my own aches and pains that slow me down.  And after almost a whole year of cancer being the focal point of our lives, I’m a little tired.  I’m tired of rushing to work without getting everything organized before I leave.  I’m tired of racing out of work knowing I’m already exhausted but I have a million things that still need tending at home.  I’m tired of driving from Satellite Beach to Orlando or Gainesville.  I’m tired of trying to figure out how to put in a full week’s worth of work into 3 days.  And I’m tired of always being 3-4 weeks past due for a hair cut or pedicure or washing my own underwear.  So I’m getting a little cranky.  I can see the light at the end of the tunnel, and I can see Steven is finally on his way back to recovery after a really hard hit.  It’s just not quite here yet and we’re both in that vortex of irritation.

Today we were in the out-patient chemo room on the 7th. floor of the BMT wing at Shands. I could see our old stomping ground Chemo Room 6-18-15from there.  But instead of getting infused in a bed, Steven was in one of the comfy chemo loungers.  The nurse had given him a plumped up pillow and 3 warmed blankets to keep him cozy.  And all the patients there were wearing street clothes because when the IV pump beeps that it’s done, we all got to leave.  We get in our respective cars and go somewhere that is not a hospital.  And I am so happy that we’ve finally come this far.  I could see the stem cell collection room from there, where we started our journey.  And I could see our future in front of us, with all the fabulous new experiences yet to come.  And now, I can see Steven getting back his strength and stamina and energy.  And I just pray that I have a little more patience to get to that time.  Because sometimes, with a pain in the ass, you imagine him asleep as you hold a pillow over his face…

And if you’ve never felt that way about someone you love, then you’re a big fat liar.  I just say what other people think and I think we all have had similar thoughts sometime.  In reality, I know I’m the luckiest woman in the world.  Steven and I have come so far in this incredibly challenging situation that I’d never really kill him, I’ve got too much time invested in convincing him I’m a trophy wife, that the world revolves around me and he’s the luckiest man in the world…and he is…which makes us the perfect mates!

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I’D LOVE IT IF YOU SIGNED UP FOR MY E-MAILING LIST! IT’S JUST YOU AND ME, BABY! I DON’T SHARE MY TOP SECRET SUBSCRIBER LIST WITH ANYONE, SO YOU WON’T GET JUNK OR SPAM OR FOUND IF YOU’RE IN WITNESS PROTECTION! I JUST WANT TO LET YOU KNOW WHEN I POST A NEW ENTRY. SUBSCRIBE HERE

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widgetTHIS IS IT! Unfortunately, we don’t know when Steven will be released from Shands or how long we’ll be at Hope Lodge afterwards. What that means is that I don’t know how much time I’ll be away from work without pay. I’ve only got 2 sick days and 1/2 a vacation day left and our bills still keep coming! If you think you’d like to help us, we’d really appreciate it. Visit our GO FUND ME page and drop a bit in the hat if you have some to spare.

The Post I’ve Been Avoiding

IMG_0815Most people know that I don’t shy away from much.  In the grand scheme of things that’s very true.  However, when it comes to subjects that might seriously embarrass or humiliate people I love, even I have a filter.  (NOTE TO ALEXIS:  I said “seriously embarrass’…in my book, that does not include telling your high school friends that you are the fruit of my loins.)

So it is after great thought and contemplation that I write today, knowing that although the subject is delicate, it is also such a huge part of the chemotherapy side effect menu that it must be addressed.  With Steven’s blessing I share a little more insight into this transplant process, particularly for those who walk the path behind us.  This is a documentation of our journey.

As you can see, this has been a journey and in the two weeks since the transplant, Steven’s physical appearance really shows all the stress that his body has endured.  The hair and beard that had been growing back has fallen out again, his weight has dropped by over 20 pounds and his voice has taken on that rasp that always comes after chemo.  He sounds like an old man.  The chemo brain has him grasping for his words a little and making his speech much slower.  But the real bane of our existence is a lot more boring…

STEVEN ON TRANSPLANT DAY - MAY 27, 2015

STEVEN ON TRANSPLANT DAY – MAY 27, 2015

STEVEN TODAY -

STEVEN TODAY (2 WEEKS AFTER TRANSPLANT) – JUNE 14, 2015

To Paraphrasing the great poet Meghan Trainor, it’s all about the poop. In the last two weeks, Steven has run the gamut of side effects. After his fever spiked, he had the nausea, vomiting, diarrhea, headaches, body pain and more hair loss. The new side effects commandeered his days as expected, and the bout with a c.Diff infection made diarrhea the main event. Slowly over the past two weeks, the C. diff infection was eradicated, the nausea, vomiting and pains have disappeared as his body starts multiplying the good stem cells, and Steven is feeling better.

And then there’s the diarrhea. Steven’s whole world has been all about the poop for 2 weeks and it’s been the scourge of room commode7122! At first it showed up with the C. diff infection and it was the WTF explosive kind of diarrhea that nobody wants or wants to hear about. But this is part of the transplant vacation package that shows up only in the fine, fine print in the brochure. Not everyone gets this little side trip, but as we learned on the BMT wing, nothing was unusual about it. Actually on this floor it seems nothing is ever a reason to panic. The staff has seen everything over the years and are calm, cool, collected and have antidote for just about everything. I firmly believe that if a unicorn flew out of Steven’s ass they would have some Skittles on hand to feed it! (I think that’s what unicorns eat)

Meghan & Steven

STEVEN & NURSE MEGHAN

Just as a little side bar, here is a very interesting observation about the staff. The nurses here are just as active in treating and educating the patients as the PAs and the MDs. And when I say “treating” I mean that in addition to the great care they provide, these men and women are always watching and evaluating their people. The nurses begin their shifts with rounds and then come back to the patient’s room with a cornucopia of all the medications that each patient needs during their 12+ hour shift. The coveted drugs with street value are combination locked up in a little drawer built into the patient’s room. All of the available doses of everything are monitored by the nurse and access is immediate for pain meds, nausea relief, diarrhea control, etc. Unlike other hospitals, the nurses don’t call down to the pharmacy once the patient has an issue, so there is no waiting necessary when controlling problems. And, the nurses know stuff! If something isn’t working or is causing a bigger problem, they are incredibly proactive in calling the PA or doc to make a change or tweak a medication. This is the most impressive group of nurses that Steven or I have ever seen. And unfortunately, we seen A LOT!

So with all the knowledge, experience and care that is the norm here at Shands, it is baffling that a minor issue like diarrhea hasimodum not been able to be controlled. We thought the problem would clear up once the c. Diff was gone. It didn’t. However after it cleared up they were able to add Imodium to Steven’s day and after the first couple of doses, it seemed to help…until it didn’t. And then the nurses tried almost every combination of times and dosages to get Steven some relief. They would show up at the beginning of shift with 8 little pills that were meted out hourly, or one every two hours, or two every four hours, or after every bowel movement or when it started to rain. There was no great success and the most honest dosage suggestion came from Dale the night charge nurse who has been at Shands for 30 years. (I really like Dale, he’s a little snarky, too.) His thought was to take all 8 pills, group them together and shove them up the ass. The situation was so dire that we considered it…or maybe that was just me. In the end, lol, we passed.

IMG_1185So here’s the touchy part. Last weekend, Steven was finally so frustrated that I had to wash all his clothes each day of my visit that he asked for some Depends. In an effort to make it less humiliating, the staff calls them Adult Briefs, but that is just a code and it doesn’t really make it any less embarassing. I will admit that I was even more impressed with Steven after his request because I knew he was putting his dignity aside briefly…or adult briefly…to make it less work for me and the staff. And I gotta say, I still think he’s the man of my dreams even in Depends. I guess you could say he’s the most Dependable man I know! (He had me take a pic, but I just can’t bring myself to share…sorry)

Among the highlights, this past week showed a fungus among us…in Steven’s blood. Not sure how it got there but they were worried it might have been something connected to his tri-fusion port. So after they ran some unit-fungal meds through him and the problem was contained, they removed the port on Thursday night. Unfortunately, now he has one of those arm IVs in addition to the basic port that was surgically installed in his chest under Dr. Sprawls care. So since the Alaskan Pipeline of ports is gone, Steven has tubes running through every opening in his shirt bringing meds and fluids into his body. In addition he’s wearing a portable heart rate monitor that’s housed in his pocket with all kinds of wire leads running to his chest. More on that later.

Worse news of all is that Steven really thought he was getting out on Friday. I came up here Thursday with enough stuff to holdHope Lodge us over for another week in Hope Lodge, but the whole plan has gone to shit…literally. In addition to the diarrhea, another confounding wrinkle is that Steven’s blood pressure is fine when he’s in bed, prone. When he sits it goes down. When he stands it REALLY goes down. Like 59/37 down. That’s about 2 pumps away from dead. Luckily his pulse goes up to compensate, and he doesn’t feel dizzy so he doesn’t fall down, even though he should. Because of that, he spent most of last week on lock down because he was SO expected to fall that his bed alarm was set so he couldn’t get up without supervision. Which is a great parlor game for someone with diarrhea. We’ll call it Spin the Potty. How long can you wait to get to the commode? I’m sure you get the picture so I’ll make the rest of the game description as (adult) brief as I can. You hit the bell to alert anyone that you have to get up and then gamble that it was enough time to get to the room and turn off the alarm before the shit hits the fan, so to speak. So that’s one way to pass the time in a hospital!

With everything tied together (you do know that the leg bone is connect to the ankle bone, right?), and after a SWAT team of nurses showed up the one night when Steven’s pulse dropped down to the same rate yogis achieve to recline on a bed of nails, the big guns were called in. Cardiology was in here yesterday. They can’t find anything wrong with Steven’s heart and suspect that low blood pressure is linked to the dehydration that comes with 2 weeks of diarrhea. So then Gastroenterology showed up. They are perplexed as well and need to take a closer look. Which means that tomorrow Steven will be getting a side trip on the Colonoscopy ride. And today, to add insult to injury, my incredibly patient husband will be given drugs to GIVE him the shits. Seriously, I don’t even have a quip. I’m at a total loss. So for now I will conclude with what said this when I started this post:

I share a little insight into this transplant process for those who walk the path behind us. This is just a documentation of our journey…but if you’re walking behind us, watch out where you step!

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I’D LOVE IT IF YOU SIGNED UP FOR MY E-MAILING LIST! IT’S JUST YOU AND ME, BABY! I DON’T SHARE MY TOP SECRET SUBSCRIBER LIST WITH ANYONE, SO YOU WON’T GET JUNK OR SPAM OR FOUND IF YOU’RE IN WITNESS PROTECTION! I JUST WANT TO LET YOU KNOW WHEN I POST A NEW ENTRY. SUBSCRIBE HERE

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widgetTHIS IS IT!  Unfortunately, we don’t know when Steven will be released from Shands or how long we’ll be at Hope Lodge afterwards.  What that means is that I don’t know how much time I’ll be away from work without pay. I’ve only got 2 sick days and 1/2 a vacation day left and our bills still keep coming!  If you think you’d like to help us, we’d really appreciate it.  Visit our GO FUND ME page and drop a bit in the hat if you have some to spare.