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!

Day 49. Half Way There!

The steroids that saved the day!

Willie is doing 100% better!  The steroids did the trick and he has been feeling good since Sunday.  Yesterday he was feeling so good, we took a trip to his favorite gun store down the road and looked around.  His appetite has increased and he actually gained 1 pound! 
He was looking forward to sitting in a chair for his appointment today to impress Dr. Lenny.  This is the first time he has felt good enough to be in the common area and we couldn't wait to hear what Lenny would say about it. 
It was not meant to be though.
When we arrived at the cancer center they ushered us quickly into the back isolation area like they did when he had C-Diff.  We told the nurse that he did not have anything contagious and requested a chair and she insisted that he had been sneezing and coughing.
"I saw in his notes that they did a nasal swab last week." She said as she escorted us into a private room.
"Then you also saw that the results were negative." I corrected.
"Yes, they were negative, but if he is coughing and sneezing then we can't risk him sitting in a chair."
Willie and I looked at each other and rolled our eyes.  This is not the first time they have confused his symptoms with someone else so I'm sure they were taking caution for someone elses's cold. 
It's too ironic that the one time he was actually feeling well enough to sit in a chair, the nurse wouldn't allow it!
Lenny came with the results from the blood work a short 45 minutes after we arrived.
"I see you're still in bed, but at least your sitting up today!" He said as his usual greeting.
"I asked for a chair, but they think I'm contagious." Willie insisted.
Lenny laughed and assured us that he would fix the status in the computer.
We filled him in on Willie's good weekend and Lenny smiled with satisfaction.
"The results are still not back on the pathology of the scope, but the fact that the steroids fixed everything means that we still can't rule out GVHD."
"What do we do now?" I asked.
"Now we wait for the pathology results and see how he feels." It wasn't exactly a definative answer, but we would take it.
"You're labs are perfect today so there are no concerns there. You're looking good man!" He said as he opened the door to leave.  He paused, then leaned in and gave Willie a fist bump before leaving.
We definitely like Lenny.
Willie had a great afternoon with no nausea.  He ate a good lunch and is requesting tacos for dinner.  I know he's feeling better because he has started making comments about how good the food on TV commercials look.  He even said McDonald's fish bites looked good, which to me, look disgusting!
I got a phone call from Lenny about 6 PM.
"I just got the pathology back from the scope and everything is negative." He said.
"Hoooray!" I shouted into the phone.
The other end was silent.
"That is a good thing, right?" I asked because of his silence.
"It is a good thing." He assured. "But we still can't rule out GVHD.  We usually diagnose based on symptoms and the pathology backs us up.  If we find that the symptoms return and he starts feeling bad again then we will move forward with GVHD treatment."
I was quiet for a moment as I processed this.
I'm so sick of good news not really being all the good.
"So what happens if he feels good for a few weeks then..."
"Starts feeling bad again?" Lenny finished my thought. "That won't happen.  If it is really GVHD then he will start feeling bad again within the week.  We'll check in at your Friday appointment and see how things are going and just take it day by day from there."
I sighed and agreed.  I find it hard to relax when there is still a thread of GVHD on the table.
"Have you ever seen a case where someone improves from taking a few doses of steroids and doesn't need any more after that?" I asked hopefully.
"Yes, I see it all the time.  All this started when he got the C-Diff so there is a possibility that the inflammation was from the infection and the steroids fixed that.  I personally think that is what has happened, and that will be our best case scenario.  Only time will tell."
"We'll hope for the best case scenario!" I said brightly and he laughed in response.
"Yes we will.  See you on Friday."
I hung up and reported the news to Willie who was relieved-ish.  I don't think either of us will be totally relieved until we see what the coming days bring. 
In the meantime, we'll pray for more good days!

Day 46. Back to the Graft....

Yesterday was a rough day.  Willie woke up feeling nauseous and dry heaved a few times before we left for the cancer center.  He wanted to sit in a chair in the common area to prove to Dr. Lenny that he was feeling well, but the nausea got the best of him and he chose a bed. 
"Still in bed I see." Lenny said as he entered the room.  He wasn't smiling as broadly and it felt like bad news was forthcoming.
He asked how the scope went and we told him the good news from the Endoscopy doctor.
"I called the pathologist a few minutes ago and he said he hasn't received tissue samples for Willie yet. We'll still wait and see if there is some kind of bacterial infection, but I think it's time we treat this like Graft Versus Host Disease."
We stared at him in shock.
"But the doctor said his gut looked good." I rebutted.
"And that is good." Lenny agreed. "But he has far too many symptoms for me to say it isn't GVHD.  I think what we've got here is a really mild case that we've caught early before it has damaged the gut which is a really good thing."
He smiled after saying that, but we didn't return the sentiment.  It was as if he had taken all of our high hopes from the previous day and incinerated them in front of us.
"So what does it mean moving forward?" I asked.
"We're going to give him a steroid treatment today and tomorrow.  He should start feeling good this weekend which is a really good thing, but it will also indicate to us that it is GVHD."  He had removed his mask at this point and was staring from Willie to me to make sure we understood what he was saying.
"And what happens after this weekend?" I needed all the details.
"When you come back on Tuesday we'll see if the steroids helped.  The test results from the scope should be back by then so we can see if it is simply a gut infection, there is a chance it could just be a bug."
We smiled at that.
We are hopeless optimists.
"I just want to let you know that I don't think it's an infection though." He said, bringing us back down. "The clinical presentation is identical to GVHD so I need to treat is like that."
What a bummer!
We sat in silence for a moment until I could formulate the scrambling thoughts in my head into a question.
"And what does this mean for our future?  Is this a set back?"
Lenny broke into a broad smile and reached out to pat Willie on the back.
"Not at all." He said, reassuringly.  "This is all part of the game and it's a good thing we're catching it early.  If it is GVHD it is a very mild case and we'll treat it with steroids.  You'll still get out of here by day 90."
We both perked up at that.  It was the first time any doctor had hinted at the idea of getting out before the 100 day mark, although we've heard plenty of first hand accounts of people being released in around day 80.
"Have a good weekend." He said, slapping Willie on the back. "You're going to be feeling so much better."
Willie nodded in response and Lenny left.
Neither of us said a word.
The nurse gave Willie a dose of the big-dog IV nausea meds he had during radiation treatment, and we hoped for a better afternoon. 
The IV didn't change anything and he was throwing up as we left the cancer center and dry heaved all the way home.  When we got back to the apartment he slept for a while then woke up and ate something and took the steroid.
I think we were both expecting something magical to happen immediately, but we were sorely disappointed. 
He was still nauseous so he laid down to take a nap and I sat on the couch staring at the wall.  It's days like these that I want to forget.  We had allowed our hopes to soar so high from the endoscopy results that I had never expected to hear the GVHD threat.  I know that it is not necessarily bad news, but it definitely disappointing news and I hadn't prepared myself for it.  I know in my heart that everything will work out and in comparison to many of the other bone marrow transplant patients Willie is doing well, but the roller coaster of fear that we ride can sometimes become exhausting.  It's days like this that make me want to raise my hands in the air and shout "I'm done now, let me off the ride."
We are both grateful to have Lenny along for the ride though.  Willie was feeling better last night and we talked about the discussion with the doctor.  We agree that it is a bummer, but we will do whatever we need to do to get him feeling better.  We are blessed to have such an astute doctor as we have in Lenny to take such excellent care of Willie.
On a brighter note, Willie is feeling better today.  He went for a walk in the courtyard and is currently playing baseball on his PlayStation. 
Thank you all for the continued prayers and words of support. 
Happy weekend to all!
See you Tuesday.
(hopefully with better news!)