We're Still Here!

Hey ya'll. It's Sam.

I want to first say that I'm not sure I could have done any of this without my wife by my side.  She is a rock, and it's impossible to thank her enough.  And to my mother-in-law who thought she'd escaped the treacherous north 22 years ago. I know many men complain about their mother-in-laws, but I am truly blessed. And, of course, my son. Everyone always says they don't know how Kristen and I managed between my treatments and raising Jack, but we say thank God we have him! He's a constant reminder of what's really important in life. 

I know it's been awhile since the last post, but don't be alarmed. We are surviving with lots of love and medication.  I was released from the hospital on April 27th, and the adjustment back to home life was much more difficult than I had imagined.  I became so dependent on the nurses and doctors and I became anxious about leaving when I realized the care would now be placed solely on my family and myself.  It is definitely different living at home and having so many restrictions. Wearing a mask really bugs me. I know it sounds funny but just being able to walk around is hard enough, and then this embarrassing mask that makes you look like a SARS patient. But I know it keeps the construction dust and germs out of my lungs. Then there's the food restrictions. Everything has to be cooked, no fresh vegetables and hard to wash fruit (berries, cantaloupe, and such). And no restaurants for the 1st 100 days post-transplant. It's impossible to trust strangers to handle your food when you have no immune system. Anything I eat is cooked by myself or my wife. Let's be honest, mainly my wife. But, of course, I know these are minor things, and I am truly happy to be alive. But I thought they were worth mentioning, especially if anyone stumbles across this blog whose going through the same thing. I think it's normal to feel anxious and frustrated when you've been through so much and you're so close to the end.

I am happy to say that I do feel better everyday.  It was quite an experience with the transplant, and April 3rd (day of transplant) is a day I will never forget. Some say it's my new birthday, but having recently witnessed the miracle that is childbirth, I don't feel quite right taking that honor away from my mother. But there's no doubt, I have been given a second chance, and I am not going to waste this opportunity. I'm inspired more than ever to be a better husband, a better father, and a better man. When I started this adventure I weighed 298 lbs. As of today, I am 238 lbs. Of course, I do wish I lost it under different circumstances, but I must admit, the chemo/transplant diet sure does get the job done!  I lost a lot of my muscle mass while in the hospital and I've been gradually trying to build it back.  I know it will take some time.  I am also pleased to say that we will be moving back to Florida soon! Probably by the 2nd week in June.  There is a great transplant doctor at Moffitt in Tampa who completed his fellowship at Sloan Kettering and knows my doctor well. My wife has been lobbying to get me transferred south for follow up care since before I was even admitted so it seems her persistence has finally paid off.  If you can believe it, they still haven't confirmed that I'm in remission since I still had signs of disease going into transplant. I have a PET scan scheduled for June 4th and I pray we'll finally be able to hear those words.

Well, I guess that's all I have for now. Thank you so much for the continued love and support you all have shown to me and my family.

Day +25 A Very Good Day

Sam was discharged yesterday afternoon, and my mom and Jack flew up this morning!  I don't have a lot of words today.  Just taking it all in and enjoying life's blessings.  Sam is very, very tired, but oh so thankful to be back in his own bed, and not having his vitals checked every 4 hours.  Pictures and updates to come, I promise.

Day +21

Sam is doing great!  The steroids they put him on over the weekend really seemed to help calm his belly.  He had an upper and lower endoscopy done yesterday afternoon, and the preliminary results show all is clear up top, and mild inflammation in the lower GI tract.  We should have official results by the end of the week.  They will be tapering off his meds (including the steroids) and will begin transitioning some to pill form.  Still no definite discharge date, but they said if all continues to go well we may be out of here by the end of the week.  I know!  Can you believe it!?

Here's a recap of the past few days.

Restricted diet to help calm his belly.  Plain pasta and boiled potatoes.

Prepping for endoscopy. 

Back to his normal, low microbial diet.  An angel of a nurse slipped us a pediatric menu.  Yes, those are PB&J stars and chicken fingers.   

And a belgian waffle for breakfast.

taking down the pain pump!!

Day +18

Sam had more vomiting, intestinal issues and stomach cramping last night which convinced his doctors that this is most likely gvhd.  Because early detection and treatment can literally be a matter of life and death, I was relieved to hear they will start treatment today instead of waiting for Monday's tests.  Since his donor was a mismatched female who has had multiple pregnancies, he was at a much greater risk for this to happen.  So we'll start treatment today and continue to pray that he gets better.

In the meantime, we have some people to thank.  David and Laurel Maddox, thank you so much for your funny, thoughtful care package.  You certainly know Sam!  Dr. Lehtola, we can't tell you how much we love and appreciate the beautiful gifts.  If I had known you were such a talented seamstress, I would have solicited sewing lessons instead of goofing off all those years at Frazier Rogers.  Cody Welchons, the movies are perfect.  Thank you so much.  We love you!  A big thank you to Jeannette Bimonte and all of Sam's AGR brothers who helped create and distribute these cool gator wristbands to support Sam.  Cancer is GATOR BAIT!  Love it!

And a super huge thank you to Judy Graves!  Remember that storm that came through Vero Beach in early October?  It left our family room looking like this-

Well, over 6 months later and it still looks like this!  On top of everything going on up here, we've been trying to track down all responsible parties to get this fixed.  Not really sure why we pay so much money every year to Justine Rodgers Signature Insurance, but I suppose that's a topic for another day.  The fact that Sam can't be around any new construction for 3 months after transplant brings a new sense of urgency to the project.  If, after everything, our trip home was postponed because of this, things might get a little ugly.  Thank the lord, Judy Graves stepped in and after one brilliantly worded letter, our house will be fixed by the end of the month.  If you find yourself in a pickle, she's definitely the lawyer to call.  772-257-5079

Day +17

Sam is doing great.  His counts have been up and down, but apparently this is normal.  They've taken down a few other medications and again lowered the rate on his pain pump.  We've been doing exercises and walking laps, and he's continuing to eat like a champ.  The one downside is that he's having some intestinal issues and is needing to use the bathroom much more frequently.  His doctors aren't sure if this is just a side effect of the high dose chemo or the very beginning of gvhd.  He's scheduled to go in for some tests on Monday to find out.  If it is gvhd, it's treatable.  In fact, his doctor said a mild case isn't always a bad thing since it's likely attacking any residual lymphoma cells, and relapse rates tend to be lower for patients who've gone through it.  Hoping for gvhd?  No.  Just not as terrified as I've been.

Hospital life can get a little monotonous so it's always a pleasure when Kelli Powell stops by.  She's one of the music therapists here, and she's amazing.  Regardless of what's going on, she always gets Sam laughing and me crying (in a good way).  She had her ukulele with her today so I requested a special little song for Jack - something my grandmother would always sing to me.  Thanks Kelli!

 

 

Day +15

The ultrasound results came back negative for vod (fantastic!!), but did show his gallbladder was enlarged with several gallstones and "sludge".  They said this can happen when patients aren't eating (Sam hasn't eaten in over a week), and the TPN (liquid nutrition) he's been getting can actually make it worse.  His doctors weren't sure if it should be left alone, drained or removed altogether so they called up the surgical team for their opinion.  The thought of a possible surgery or having a drain placed in his stomach at this point was a bit much for Sam, and this morning was one of his lowest points through this whole cancer journey.  The surgical team finally got up here and told us they foresee this clearing up on it's own when he starts eating again and is taken off of the TPN.  To say he was thrilled would be an enormous understatement.  He ordered some chicken noodle soup and a grilled cheese sandwich and ate every bite.  Because he tolerated the food so well they're taking down the TPN tonight, and also lowering the basal rate of his pain pump.  Two big steps towards being sent home!     

Day +14

The good news is that Sam's wbc continues to go up.  2.8 today!  His neutrophils have finally come up too so he's no longer confined to his hospital room (though he still can't leave the floor).  The downside is that he's in a horrible amount of pain, and unable to enjoy his new freedom.  Yesterday was one of his worst days since transplant, and they've once again had to increase the base rate of his pain pump.  His doctors think it's veno-occlusive disease of the liver or VOD.  It would explain the crippling pain he's experiencing around his liver, the fluid retention, and newly elevated bilirubin levels.  This is a fairly common complication within the first 20 days, and thankfully, they have a treatment plan ready.