Day 82. Happy Easter!

Happy Easter to all! 
I love this day.
Easter this year is incredibly poignant to me.  We celebrate this holiday to remember that the Savior Jesus Christ rose from the grave.  His sacrifice made it possible for each and every one of us to overcome any trial or challenge we may have such as death, pain, sickness, fear or a broken heart.  It also brings us hope that we can all rise from our personal darkness into the light of a brighter day.
I feel as if Willie and I are emerging from our personal tomb.  I am so grateful for the improvements he continues to make each day and look forward to the new life we will build together. 
His clinic appointments last week were uneventful which is how we like them!  Lenny had some time off so we had Tammy who we met during the first week of radiation and haven't seen since Willie left the hospital.  She couldn't believe how good he looks.  She just kept staring at him and shaking her head in disbelief.
"You've done really really well." She said and patted him on the back.  "I remember that first week when you couldn't stop throwing up!"
We assured her that we remembered that awful week too!  Thank goodness that was short lived!
She agreed with our plan to go home next week and walked us through the next steps.  Next Tuesday Willie will have a bone marrow biopsy and have his PICC line pulled from him arm.  We get to move home for good on Wednesday, which is his birthday!  After that we will check in at the clinic once a week or every other week until May 1st when we meet with Dr. Laport who is his transplant doctor.  She will make all the plans from there regarding his medication and appointments.
He is still on steroids, but the dose is down to 30 mgs and his blood sugars are not nearly as high.  He will stay on those for a good 6 months as they slowly taper down the dose.  If the skin rash or gut issues return at any time, he will have to up the dose again.  The steroids are keeping his immune system suppressed enough to keep the donor cells from attacking his own.  The hope is that over time his cells will be able to live in harmony with the new cells without needing medication.
He is also taking Prograf to suppress his immune system and discourage GVHD.  Lenny said to plan on continuing this pill for another 6 months to a year.  Willie's immune system will be suppressed by these meds as long as he's on them so we are hoping it wont be for too long.
Our friend Casey, who got a transplant the same day as Willie, got some bad news last week that his cancer is back.  We have been thinking of him and his family daily and keeping them in our prayers.  He was re-admitted to the cancer unit on Friday to start chemo again.  We have hope burning like a forest fire for Casey because his hope is our hope.
We have been so blessed with Willie's healing, but also know that everything could change in a moment.  I suppose that is true for everyone on the planet, but the cancer world heightens one's awareness of mortality.
As for now, we move forward with our heads held high and our hearts full of gratitude and hope.  We are still at the beginning of Willie's healing and have a long road ahead, but hopefully that hard part is over.  The mortality rate for a bone marrow transplant is 40%, which means one out of every three transplant patients doesn't make it to the 5 year mark.  I hate thinking of these stats because we have made too many friends now who have had transplants and I refuse to believe that any of them won't make it.  I especially refuse to believe that we will be one of those stats.
That is simply unacceptable.
We have been told that this 5 year point is when they can say you are "cured."  Until that time, doctors hesitate to declare anything.  These are things we don't like to think about and rarely speak of, but it lingers in both of our minds.
I asked Willie the other day if he will ever be able to live without the fear of a relapse being a constant thought. He said he doesn't know about that and only time will tell.  I know it is something on my mind constantly even though I try to deny it.  I don't see a place in our future when the fear of relapse will disappear.  There will never be a time when he will have a cold or flu that we won't fear it is something more. 
Our life will never been the same after this, but I don't see that as a bad thing at all.
Because our life will be better.
We have learned so much through this trial of fire.  It has molded us into better people, changed our outlooks and welded our marriage into an unbreakable bond.
I can honestly say I am the happiest now than I've ever been, not because our circumstances are perfect, but because my definition of happiness has changed.
To me, that is a miracle.

I hope you all have a lovely Easter filled with peace and hope for a brighter tomorrow.  There is a light at the end of the tunnel for all of us!

Day 70. Ten Weeks Post Transplant!

Scout likes her new ball with teeth printed on it! 

The girls got two new toys this weekend!

This past week has been really busy.  Willie has been feeling really good and we have been working on getting things going again for his business.  We have also been working on taxes for the shop which turned out to be quite the task! 
Last weekend was Will's Dad's birthday and we got the OK to go home and celebrate.  It was so good to be home.  Willie felt good all weekend and got to enjoy some delicious meals at his mom's house.  His blood sugars continue to be an issue, but they aren't nearly as high since he dropped the steroid dose to 40 mg last Friday.
The next step in our journey is the dreaded bone marrow biopsy that is usually given on day 90.  We talked with Lenny about this at our visit last Friday and it has been on both of our minds since. Last night I dreamed that Lenny came to our apartment to do the biopsy while I slept on the couch the whole time. I woke up laughing at the way my mind turned that anxiety into a dream.
Our visit to the cancer center today went really well.  Lenny came in with his usual smile and reported that all of Willie's blood counts look fantastic.  His red count came up to 12.2 which is almost normal!  Everything else is within normal ranges and he is really happy with how Willie is improving.
"We need to pick a date for your bone marrow biopsy." He said, with an upbeat arm motion.
"Will you be doing it?" Willie asked.
"If you want me to." Lenny replied, looking a bit touched by the honor.
"I dreamed last night that you came to our apartment to do the biopsy." I said.
Lenny threw his head back and laughed.  He has a contagious, high pitched chuckle that makes us laugh every time we hear it.
"Now there's a business idea." He said.  "Boutique bone marrow biopsies!"
He adjusted his face masked and wiped a laughter tear from his eye.
"So what day do you want to do it?' He said, returning to his regular business tone.
"My birthday is April 3rd and we would like to be home for that if possible." Willie ventured.
"What day will that be after transplant." Lenny asked, as he took a seat across from Willie.
"Day 85." Willie quickly replied.  He has had that day memorized since he received the transplant.
"Day 85." Lenny repeated, slowly.  "Well I don't have a problem with you going home then if everything keeps going well.  I'll schedule the biopsy for the 2nd.  We'll take your picc line out after the biopsy and let you go home."
His eyes crinkled below the yellow mask suggesting a broad smile underneath.
I can't believe the day to go home is arriving so quickly.
We are excited!
And anxious.
At the same time.
I suppose it is natural to have some level of anxiety about returning home after a life altering event like a bone marrow transplant.  We have become accustomed to the life that cancer has scheduled for us and it is going to be weird to adjust to living without constant doctor appointments, medications and lab counts.  Willie still has a lot of healing to do so those things are not going to disappear completely, but his appointments will be weekly then monthly and in time he should be able to wean off of all medication.  There is still a road of recovery ahead of us, but it is nothing compared to where we have been!
We are so grateful for the prayers and faith that has brought us this far.  There has never been a point in this journey where we have had to walk alone and we are most grateful for the love and support we have received.
Here's to more good days ahead!

Day 64.

If happiness could be quantified in a sound it would be that of the crashing ocean waves.  There is nothing that an afternoon near the water can't fix!  Willie has been having a series of good days and we have been taking full advantage of them by taking day trips to the water.  On Monday we took a 45 minute drive to Half Moon Bay and spent a few hours basking near the water and enjoying the crash of the waves. 
Willie got some curious stares from others as he walked down the beach in his industrial grade filter mask, but we didn't mind.  There wasn't a cloud in the sky and the wind was cool enough to keep us moving down the sand.  I stood and watched Willie for a moment as he waited for the waves to crash on the sand.  He would stand his ground as the water lapped dangerously close to his toes before dancing away just before the tide touches his shoes.  It was a moment of pure and simple happiness, like that of a child. 
These are the moments I am most thankful for; the moments when everything in the world is right.

His appointment at the cancer center yesterday was perhaps the best one we've ever had.  Lenny was out on his rare day off so we saw Dr. Kamal who is a student in his last year of fellowship.  He was doing his rotation in the hospital when Willie had the transplant so it was good to see him in the clinic now.  He couldn't believe how much better Willie looks since he last saw him in the hospital and was happy with all of his lab work.  The elevated white blood cell count returned to normal which proves that it was inflated from the C-Diff infection.  His blood sugars have improved a lot since he dropped the steroid dose so the threat of insulin has been removed and his stomach is feeling 1000000% better now that the C-Diff is being treated.  It's amazing what killing a superbug can do for a guy!

Today we took a ride up to Benecia and walked around the waterfront.  We wandered through the cute shops that line the downtown strip and pet too many dogs to count.  It seems everyone in Benecia has a dog as an accessory and we got to see all kinds today from Chihuahuas to Labradoodles. 
There isn't a breed of dog that Willie doesn't like and we had a good time talking to the owners and learning about their dogs.  It sounds silly to be so refreshed by a day of petting strange dogs, but it was a recharge that we both needed.  We miss our dog desperately and count the days until we can be home for good, complaining about how badly she sheds!

Day 60- C. Diff....Again!

Yesterday was a bummer day.  I woke up with a terrible feeling that something was going to go wrong.  I've had this feeling a handful of times since Will's diagnosis and most times he has ended up hospitalized.  I'm most grateful for these impressions because they encourage us to act. 
We went to the cancer center and his lab draw showed his white blood cell count had shot to 19.2.  Normal count is below 11 so we were concerned. 
Lenny, however, wasn't worried at all.  He said it is a side effect of the steroids and is to be expected.  Willie has been having terrible gut pains since Wednesday night and Lenny thought it is the GVHD acting up.
"Can you please test him for C. Diff?" I asked.  It was a thought that came to my head a few days ago
 that I haven't been able to shake.
"I don't think it's C. Diff." He said with a slow shake of the head. "He doesn't have any of the symptoms.  Unfortunately this is just part of the GVHD and we're seeing now that it may be worse than we thought. We also can't decrease the steroids today like we discussed until this is taken care of."
"I just don't think it is GVHD." I debated.  "Last time he had C. Diff he didn't have the classic symptoms and I feel like that is the problem again."
He stared me down for a moment before slowly nodding.
"We can test his stool if you want, but I don't think it's the problem."
I thanked him and we moved on to discuss diet to relieve his gut pain.  He suggest moving Willie to BRAT diet which is comprised of bananas, rice, applesauce and toast.
"I can't do that." I said, trying not to sound belligerent. "If I put him on that diet his blood sugar will shoot through the roof."
"Oh yeah." Lenny said, scratching his head. "I'll have the dietitian come in and talk to you then and you guys can figure it out."
It is not Lenny's job to know the inner workings of nutrition so referring to a dietitian is exactly what he should do, but I was annoyed by the suggestion.  I have the same schooling as any dietitian with one mild difference: I couldn't afford to do a 6 month, non paid internship after I graduated to qualify for the dietitian exam.  Perhaps my annoyance is motivated by pride since I am a certified nutritionist, but I have a firm grasp on my husband's diet and don't need to be told what to do by a government trained diet counselor who knows nothing more than the food pyramid.
The dietitian that came to see us was the same girl who had visited us when we were inpatient.  That previous visit had gone poorly since she spent the entire time trying to tell me that there is no such things as powdered pea protein which does, in fact, exist.  I had a bad taste in my mouth after that exchange so I was less than excited to see her yesterday.
She came in with a fury and began drilling me for what Willie is eating.  I responded in dietitian-speak, reporting his meals in terms of how many carbs, fats, and proteins comprised the meal instead of the actual food.  She wrote down the items feverishly and pulled out a calculator.
"He is not eating enough calories." She reported.
"I'm fully aware of that." I replied.  "We are doing what we can and his calorie intake is improving daily."
"He needs to start drinking the high calorie shake." She said.  This is the dietitians solution for everything.  I learned this in the years I ran the nutrition department at a skilled nursing facility.  They are trained to get calories into their patients in the quickest and easiest manner which involves forcing a patient to drink a high calorie sludge that  is made from corn syrup and soy bean oil.  The main ingredients are toxic to the body and the last thing that an immune compromise patient should be eating.
"The shake has far too many carbs." I replied.
"And what's the problem with that?" She shot back.
"We're trying to control his blood sugars with diet and that means carb control." I explained.
"That's why there is insulin.  He will start taking the shots today and then he can eat a BRAT diet and drink the high calorie shakes."
I have a problem with everything about that statement.  I see no reason to give my husband shots of insulin just so he can eat a high carb diet. 
That to me, is insanity.
"We are not interested in using insulin." I explained. "His family has a history of diabetes and he is high risk for developing it."
She made a dramatic display of grabbing her hair with both hands and rolling her eyes toward the ceiling.
"Insulin does not cause diabetes." She yelled.
We stared back at her, speechless at her childish display.
"I never said that it does." I said after she calmed down a bit. "But injecting insulin can damage the beta cells of the pancreas which causes the pancreas to stop producing insulin like it should which leads to diabetes."
Now she was speechless.
I doubt she knows any of that.
"You don't understand how insulin works." She retorted. "It is used to help lower his sugars so he can eat a high carb diet."
I could see the debate was futile.  There is no need for him to eat a high carb diet.  That is western medicine thinking and everything I learned in college about nutrition as well. It has only been through my own study and practice that I have learned the follies of the Standard American Diet which appropriately can be abbreviated as SAD.  I can't blame the dietitian for preaching what she learned in school, but I can blame her for treating us like we were dumb.
"Fine," I said. "You can go ahead and give us the insulin and I'll use it if I feel it is necessary."
She nodded and smiled.  "That is the right thing to do."
She left the room and I fell apart.
"I can't do this anymore." I cried to Willie. "I feel like they are pushing us into a corner and forcing insulin on you and I can't handle it.  I refuse to give you shots in the belly multiple times a day.  Its' something I just can't do."
"You can't be upset about this because I am upset about this and only one of us gets to be upset at a time." Willie replied and I couldn't help but laugh at his reasoning.
"I'm sorry, baby." I said, wiping at tears. "I just felt so attacked by her."
"She did attack us." He validated me. "But you know what you're doing so let's keep doing what we're doing and see what happens.  I'll eat whatever I have to, I just want to feel better."
He held his gut and rolled over, obviously in pain. 
I hated that he had to console me when I should have consoled him.
We left the cancer center around 3:30 PM and got a phone call from Lenny at 5 PM.
"Well you've done it again." He said.  "He has C. Diff, just like you thought.  I don't know how you do it. I need to just give you a job here." He laughed through the phone and I sighed in response.
"What a relief." I said.
"Yes, it is.  I agree with you now that it is not GVHD and that his gut pain is from the infection.  You can go ahead and lower his steroid dose and we'll start antibiotics for the C Diff tonight."
I'm am so grateful for this tender mercy. I don't take any credit for finding this infection.  All the credit goes to a loving God who has guided our footsteps and inspired us along this curious path.
I got Willie the antibiotic last night and he took the pill with a smile.
"The Flagyl is going to work." He said.  "I feel better already!"
Of course, he was joking, but he did actually feel better last night and is having a much better morning today. I hope this is the beginning of an official climb to the top.  We're tired of this up and down stuff!
Happy Weekend to All!

Day 57. Neither Up Nor Down.

I'm loving this pic I took the other day!

When I was young we would sing a song called the "Duke of York" that tells of how the Duke  marched 10,000 men up a hill and down again.  The chorus of the song says:
When you're up your up
and when you're down your down
but when you're only half way up
you're neither up nor down.

I thought of that song today when I reflected of the events of the past few weeks.  It seems we have been hanging in the limbo of being neither up nor down, but I've come to realize it is a fine place to be.
We returned to the cancer center yesterday for our regular appointment.  Willie's labs look awesome and Lenny was happy to see that the rash has resolved.  I reported that I am unhappy with his blood sugar spikes which we have been able to control with diet and Lenny applauded us.
"All of my other patients have to be on insulin so you guys are doing something right. We will decrease his dose on Friday so it won't be like this forever." He said.
"I'll let you know our secret." I divulged and he leaned in close. "I give him his prednisone with a smoothie made with full fat coconut milk."
He hovered inches from me as a look of confusion crossed his face.
"And how does that help?" He asked.
It was the exact question one should never ask nutrition nerd like myself.  I gave him the long winded answer about how blood sugar spikes can be dramatically decreased by adding fat to a meal.  He listened intently to my explanation.
"Wow!" He said. "That is going to be so helpful for my other patients." 
We agreed.  I hope he passes the useful tip on.
"So when can I get back in the gym?" Willie asked, as Lenny listened to his lungs with a stethoscope.
"You must be feeling better!" He replied. "That's the first time you've ever asked about doing anything active."
"I'm feeling a lot better and I want to start getting my muscle back." Willie replied.
"Unfortunately, you can't got back to the gym for a while." Lenny said with a sad shake of his head. "There's just too many bacterial risks there.  You can work out in the apartment though, maybe bench press the couch or the bed."
We laughed at that.
He finished his exam and confirmed our appointment on Friday. 
"Next time we see you Willie will bench press you." I said, as we got up to leave.
"Maybe we can settle on an arm wrestle." He said with a smile. "But I don't think I'd stand a chance."
He patted Willie on the back and said goodbye.
We do like our Lenny!



Because what electronics store doesn't have a train inside?

We had a fantastic day today.  Willie felt good enough to run some errands with me.  We went to Fry's Electronics which was an adventure in itself.  The store is decorated in the style of a western saloon,  It was quite the experience to look at laptops and computers while surrounded by bales of hay.  The store was huge and filled with random items.  Never before have I been to a store where you can buy a pair of pajama jeans from one aisle and a computer motherboard on the next.  We didn't buy anything, but had a great time looking!
He had a good lunch and dinner and has had no nausea today.  At the risk of jinxing ourselves I think we may have graduated from being
"neither up nor down" to being "up!"

Day 54.

Last time I posted I praised the steroids that saved the day; today I hate them! 
Everything was going along fine until Thursday afternoon when Willie broke out into a full body rash.  This is one of the warning signs of graft versus host disease and they have been watching his skin since transplant.  It was obvious now that Lenny was right about Willie having GVHD even though the scope results were negative.
I called the cancer center to see what we should do and nearly fell to pieces when they said Lenny had a day off.  We don't expect our doctors to have a life outside of our needs!  He has been there every time we go so we decided it was probably OK for him to have day off once a month...
I talked to the doctor who was filling in for Lenny, but she didn't know our case and just said to put some anti-itch cream on the rash and check in tomorrow. We were hoping to start the steroid that day, but it seemed we would have to wait.
The rash was still raging when we went to the cancer center on Friday.  The nurse drew labs and reported that Lenny was still out so we would see someone else.  Again, we nearly fell to pieces.  It's funny how easy it is to become attached to one doctor!
One of our favorite nurses, Sandy, came by to say hello.  She is quite the talker and we always enjoy hearing her stories.  We showed her Willie's rash and smiled.
"Well there she is." She said brightly.  "Looks like your donor is showing up!"
I appreciate her bubbly attitude about a dismal rash.  She assured us that these rashes are common and it just tells us that his body has recognized the cells he received are not his own.

Willie was sitting in a chair for the first time and we were really hoping to impress Lenny with his progress, even if it involved a full body rash.  A few minutes later Lenny came around the corner and we nearly shouted our hello.
"It's good to see you in a chair!" He said to Willie.
"We thought you had the day off." Willie returned.
"I did yesterday." He confirmed.
"Only one day off for you!" Willie replied and we all laughed.
"So what's new?" Lenny asked.
Willie lifted his shirt in response.
"Well, there it is." He smiled.  "This confirms our suspicion of GVHD."
He wheeled a computer over and started typing rapid notes.
"We'll hit you with an IV dose of prednisone today and then put you are a large oral dose.  This will make you even more immune compromised so we'll need to add another anti-fungal medication."
He looked at us to make sure we were keeping up and we nodded in response.
His fingers flew over the keyboard at a dizzying speed as he continued to make changes to Willie's meds.
"The steroids will probably make him diabetic so we'll get you a blood sugar meter and some insulin." He said casually as if it was no big deal.
"Hang on." I stopped him. "I'm not interested in giving him insulin shots, can we do a lower dose on the steroids?"
"Unfortunately not." He shook his head. "Now that we know it is GVHD we need to give him the highest dose to attack it.  We can't afford to let it get worse."
We nodded in agreement, but my anxiety was reaching the limit.
"This is your field Missy." He stopped typing and looked at me. "You know how to control his blood sugars.  I won't order the insulin and if you find that his sugars are in the 300 and 400 range then I'll just call in a flex pen for you and you can pick it up."
It was the only compromise we could reach so I agreed.  The last thing I want to do is start injecting Willie with insulin.
He gave him the steroid and we went on our merry way.  Later that night his blood sugar shot to 300 so I forced him to drink some water and go for a walk.  That pulled his numbers down to 220 and we went to bed.  On Saturday his sugars were up and down all day.  I have worked myself into an anxious mess.  I know if I had the insulin pen on hand I would have the security of knowing that if his sugars shoot too high, we'd have a back up.  Instead, I control his carb consumption with an iron fist and poke his finger multiple times a day to check his sugar.  That is the part he is least excited about.
It's ironic that after all we've been through, a simple finger stick to check his blood sugar is pushing us both over the edge.
Willie is having a rough day today and threw up this morning.  There is definitely something happening in his gut, and we can only hope it's a good thing.
These are the though moments that we have to go through to get to a brighter future.
Keep the prayers coming that he will respond well to the steroids!

Happy Weekend!