Day 23

 

Today is day 23. 

There is not much too report. 

Willie is still having some trouble with his bowels,

but he thinks he is feeling a little bit better. 

This is a very boring post.

Boring in a good way.

Day 21.

Willie had a rough weekend.  He had some nausea last Friday that they controlled by giving him a HUGE dose of IV Zofran.  The dose was effective at kicking his tummy woes, but it left him constipated. 
It seems there is no happy medium for bowels in the cancer world. 
To correct this issue he took 2 stool softeners and we quickly learned that was far too many as he spent all of Sunday cleaning his insides out. If that wasn't enough, the upset in bowels left him with an uncomfortable hemorrhoid.
The funny thing about hemorrhoids is that no one talks about them, but half of the people you will meet have had them before.  Willie has not been shy about discussing his angry backside and we have heard confessions from many a nurse that she too has had hemorrhoids.  I spent the weekend reading blogs from other people who have had bone marrow transplants.  It seems to be a running theme that hemorrhoids and bowel issues are just a part of the process. 
He is expected to have bowel upset and loose stools for a long time while his gut continues to repair from the onslaught of chemotherapy and radiation it received. He basically has to regenerate an entirely new gut lining which is a task for anyone, but especially for the immune compromised.  The doctors are careful to monitor his bowel movements because Graft Versus Host Disease (GVHD) can manifest in the gut.  This occurs when the new donor cells attack the recipients bowels.  It can be very dangerous and it's something we hope to avoid.
I was entirely depressed after reading so many BMT blogs.  It seems one in three of the people I read about ended up losing their battle to cancer.  I found myself justifying reasons as to why this will never happen to Willie, because he is stronger, or that he is younger and in better physical condition. The sad, sad truth is that cancer simply doesn't care who you are. 
That's not to say that I've lost hope for our case, or that I am even the slightest bit fearful for our future.  I'm just as faithful and filled with hope as ever!  I still firmly believe that Willie is going to come of out of this just fine.  It's just eye opening to see what the process of getting to be "just fine" can entail. 
I have to keep reminding myself that coming out on top doesn't mean that you were on top the whole way.
Last night the hemorrhoid was rearing (pun intended) it's ugly head so badly that Willie found it impossible to sit on the toilet.  In his defense, the toilet in this apartment is incredibly uncomfortable.  It is low to the ground and has a tiny, tiny seat.  It is a "New Age" toilet like everything else in this complex, so it does not have a handle flush, but rather two buttons on the top.  One button does half a flush for business that is not too big, the other is a full flush button for when you need a good clean up.  I have never seen anything like it and find the whole concept to be funny.
Willie sent me out last night to find a seat raiser for the toilet.  He had used a higher seated toilet in the hospital and found it to be very helpful.  I went to Walgreens and stood in the medical equipment aisle for close to an hour, taking pictures of toilet accessories and texting them to Willie.  He didn't like any of the options and I was about to give up when an employee pushed a cart of items to restock down the aisle.  There, sitting on top of the pile was a toilet seat raiser with bars on the side.  It was as if the heavens opened up and shone down on the beautiful piece of equipment. I snagged it from the cart before the employee could move it to the shelf.
"Can I just take a picture of this for my husband?" I asked as I held it possessively.
"You do whatever you want to do lady." He said back with a sly smile that made me laugh.
"I know I look crazy right now." I replied as I looked down at the toilet seat.
"You have no idea what I see every day." He said and I laughed.
If you can't laugh about a toilet booster seat, what can you laugh about?
I texted a picture of it to Willie and he confirmed that it was indeed "The One."
$100 dollars later we are the proud owners of a geriatric toilet seat.
The good news is, it is helping to relieve some of Willie's pain. 
Unfortunately, there is not much that can be done to expedite the healing of a hemorrhoid.  We just have to wait for his body to repair them. 
In better news, Willie has been passing the time by watching old episodes of Cheers on Netflix.  He discovered there are 275 episodes total and that he would need to watch about 3 a day to see them all.  This has become his unspoken goal and today he announced he has completed the first season!  I congratulated him as if he had completed a huge feat. 
Tonight I will write "Cheers" on my gratitude chain.  I know it may seems simple and silly, but I'm grateful he has something to look forward to every day. 

Thank you for the continued prayers and support. 

Here's to hoping and praying that his bowels will begin to cooperate soon!

Day 17.

Yesterday started out rough.  Willie was feeling nauseous and couldn't even look at another pill, let alone swallow one to help with the nausea. 
He has quite the hefty pill load right now:
4 pills to prevent his body from rejecting the cells
4 pills to avoid a shingles outbreak
4 pills to protect his liver
2 pills to reduce stomach acid
2 pills to prevent a fungal infection
4 antibiotic pills...just for fun....
And those are just the scheduled pills!  He also has an arsenal of anti-nausea pills that can be taken when needed.
Yesterday, the pill amount was just too much. 
We went to the cancer center at 9:30 AM and they took his labs and started him on IV fluids since he hasn't been drinking quite enough.  As we waited on the lab results, the nurse reviewed his med list and asked if he had taken his morning doses.
"I'm having a really hard time taking my pills right now." Willie admitted to the nurse.
She responded by giving him some tricks on how to take pills.  She suggested putting them in pudding or applesauce or slipping them under the tongue before drinking.  We've already heard them all and nothing seems to help Willie.
"I think it's more of a mental thing." He said when she was done.  "I see the pills and just can't take them.  I'm thinking about getting hypnotised or something."
The nurse stifled a laugh and covered her mouth to hide a smile.
I laughed too.  He hadn't mentioned the idea to me.
"We're not laughing at you baby," I assured him "it's such a creative idea it caught me off guard."
Willie was smiling along with us, clearly proud of himself.
"I've never heard of anyone doing hypnosis, but you could try." The nurse finally replied.
I did some quick Internet searching and discovered that Stanford has a medical hypnosis department.  I called the clinic and discovered they do indeed hypnotise people to help them swallow pills!
!!!!
The woman on the phone asked if I wanted an appointment to which I shouted "YES!"
She took Willie's name and information then pulled him up in the system.
"Oh no," She said and my heart dropped "He has medi-cal."
"Yeah, he does." I confirmed.
"Well we can't do anything for you then." She said flatly.
"What?"
"We can't serve people with medi-cal." She explained.
"We'll pay out of pocket." I assured.
"It doesn't matter, we can't see anyone insured with medi-cal." She said it firmly this time then hung up on me.
I was shocked. 
Our hopes had risen so high and dropped so low in a matter of minutes.
I reported to Willie and he asked me to make more calls around the area.  There are a few other medical hypnosis clinics, but they are either run by people who look like they would be better suited to selling used cars, or they are ridiculously expensive. ($200 and hour!)
While I was in the midst of my search Dr. Laport came in.  She is Willie's primary doctor and we don't see her often, but we are always happy to see her. 
Willie filled her in on his trouble with swallowing pills and she responded by reviewing the med list and taking out a few of the preventative pills.
"I'm thinking of getting hypnotised to help with swallowing my pills." He announced.
She responded the same way the nurse did and we had another good laugh at his bright idea.
"That's cleaver Willie," She confirmed "I've had other patients who have done that and say it works.  If you want to try that, I'm all for it."
It seemed her confirmation of his good idea was all he needed to carry on. 
They gave him an IV dose of anti-nausea meds, reported that his labs are still improving, then sent us on our way.  They also got him a new medication for nausea that is making all the difference.  He felt good enough last night to eat some soup and mashed potatoes.  That is the most he has eaten in two weeks!
After dinner I laid out his pills and he took them with a bit more ease.  I suppose sometimes you just have to be heard in order to address a problem!
I offered to hypnotise him myself, but he declined.
I'm sure I could learn how to do it on youtube....

Happy weekend to all!

Day 15. To Our Home Away From Home.

Yesterday Willie's white blood cell count had risen from 1.3 to 1.6 and the doctors were pleased.  They gave him a quick exam and announced that they would be happy to send him home the next day.  Our social worker arranged for me to move into the apartment yesterday to prepare for Willie's discharge from the hospital.   I moved everything from the cottage over to the apartment which took close to 4 hours.  When I returned to the hospital I found Willie sitting up in bed while the nurse hurried around the room, packing up things.  He looked less than excited.
"We are going to have to move you guys again." The nurse explained Willie's face.
"Ok...." I waited for more details.
"He is doing so well that we need to give his room to someone who needs it more."
"What room number are we moving to?"I asked.
"We are actually moving you out of this unit." She cringed as she said it, as if she was expecting us to yell at her.  "We are going to move you to unit B."
"It's just for tonight though." I clarified.
"Yes, just for tonight." She agreed.
I looked at Willie for a reaction. 
He just nodded.
"Ok, then.  Let's go." I said as I started moving our bags to his bed.
Two men showed up to push Willie and his bed down to the B unit.  There are no secret passages in the hospital so they had to push him through the main hall, past the cafeteria where we were accosted by a million sets of questioning eyes.  I can't judge them. I admit I have looked on with curiosity when a hospital bed has passed through the middle of my meal.
We knew we didn't like the B unit the moment we arrived.  Everything seemed to be in chaos.  There were nurses rushing from room to room and the general air on the floor was one of frustration.  We got settled in room 112 and Willie's nurse came in to introduce herself.  She didn't bother closing the door and was not wearing a mask.  There are two of the cardinal sins in the transplant unit so Willie politely asked her to do both.  She complied, but we were worried about her competence. 
It was close to 6 PM and he was supposed to have labs drawn.  The nurse came in and informed us that she was aware that he needed a lab draw, but she had lost her name tag somewhere.
"I'll draw your labs after I go look for my name tag." She said as she left.
"That's nice," Willie said sarcastically "We'll just wait here while she finds her name tag."
The nurse never came back. 
About 7 PM, Tammy, the nurse practitioner who has been with us from the beginning came into the room.
"I found you!" She said with a smile.
"Well you're a welcome face." I smiled back.
"How are they treating you here?" She asked Willie.
"I'm not very impressed with this floor.  They are definitely the B team."
Tammy laughed.
"It cant' be that bad."
"Well it's bad enough that the nurse is busier looking for her name tag than drawing my labs."
She looked surprise then laughed again.
"The good news is, you are doing great and you'll only be here overnight."
"If they don't kill him first." I interjected.
We shared a laugh, knowing that he was not actually in any danger, it was just a different definition of professional on this unit.
The night shift nurse finally drew Willie's labs around 9 PM. 
I left Willie about 11 PM and hoped he would get some sleep in that crazy unit.
That did not happen.
He said the nurse came in at 11:30 PM and decided that was a good time to unclog his picc line.  That could have been done much earlier in the day,but they must have thought it would be more fun to wake him up and do it.  He didn't fall asleep until after midnight then the nurse woke him up at 5:30 AM!  She wanted to change his picc line dressing right then so a nurse that was training could watch.  Yet again, this is something that could be done any time in the day, but she chose the most unfortunate time possible. 
He was annoyed with how she changed the dressing and had to correct her several times on the procedure he has seen done every week since he was diagnosed.  By the time I showed up at 8:30 he was exhausted and ready to go. 
Tammy came in to check on us around 9 AM.
"You survived the night!" She said brightly.
"Barely." Willie groaned.
"Well we are going to kick you out today.  You just need to get your medication and meet with the pharmacist then you can go."
We were so happy.
I went over to the pharmacy to pick up the meds and, as always, there was a problem with the insurance approving the most important med.  The pharmacist said Medi-Cal wouldn't approve the anti-rejection medication until Friday, yet we couldn't leave the hospital without it.  It seems we go through this limbo every time we leave a hospital.!
I made some phone calls and tracked down the doctors.  They finally sent me to a nurse who worked her magic and got us a temporary supply of the medication.  The drug is called "Prograf" and it is to keep Willie's body from rejecting the new cells.  He will be taking this daily for the next 100 days then if all goes well, he should be able to wean off of them.
With meds in hand, we were allowed to leave.  I don't think anything in the world could have kept Willie there another minute!  We got settled into the apartment and Willie took a nap.  He says it feels really good to not be attached to an IV pole anymore.

Tomorrow we have an appointment at the cancer center.  We will be going about 4 days a week for the first couple of weeks.  As he continues to improve we will go less frequently.  I am so proud of him and the amazing strength he has shown so far. 
The doctors and nurses from the transplant unit made a point to tell him how fantastically he had done.  They never see anyone who receives his type of transplant leave in just 15 days.
NEVER!
But that's just how Willie rolls.  If there is a record to beat, you better believe he'll do it!

Day 13.

Rick, Casey and Willie

Happy Martin Luther King day to all!  We had an excellent weekend.  On Saturday night I went to check in on Casey and was happy to see he was sitting up and looking really good.  His dad, Rick, had recovered from his brief sickness and has back in the room with him.  We got talking and they told me about a fund raiser that Casey's community is doing for him.  They are auctioning off a gun and Rick had some tickets left to sale.  I asked him to come by and show Willie to see if he was interested.
Rick got up to follow me over to our room when Casey announced he was coming too.
"I don't know," I said "I don't think you're allowed to leave the room?"
"Says who?" He questioned.
"Says the doctors and nurses." I told him.
"I don't care about that." He said, getting up from the bed and reaching for his mask.
I left to see if Willie was awake, feeling confident that Casey wouldn't make it past his door without his nurse stopping him.
A few minutes later Willie's outer door opened and a pink IV pole was pushed in.
"He really did it." I exclaimed.
"Who did what?" Willie asked.
"Casey is standing outside your door."
We both looked up as he came through the door, dragging his IV pole, his Dad close behind.
"How in the world did you get over here?" I wondered.
"I walked." He shrugged.
"Did your nurse see you?" I had to know.
"Yeah, she waved at me."
"Must be OK then." I replied.
We visited for a while about how the process was going for each of the guys.  Casey has definitely been hit harder since the transplant while Willie was knocked down early in the radiation and made a comeback when he should have been declining.  Casey is still using his pain pump and is a lot of fun to listen to.  He had us laughing with all kinds of random stories.
Willie's nurse came into the room and stopped dead when she saw two sets of IV poles.
"You're not my patient." She said, pointing to Casey.
"And you're not my nurse." He returned.
"Who let you in here?" She asked, as if it was an authorized zone.
"I just walked in."
"And your nurse let you?"
"She didn't say anything."
She frowned and motioned for him to get up. 
"You need to go back to your room."
We were busted.
Casey gathered his IV lines and opened the first door then turned around.
"Do you have a little dog running around in here?" He said while looking under the bed.
Willie laughed and said "No dog here."
"Oh well," Casey turned to push his pole through the second door "that would have been cool." He said as he left.
As soon as he was gone the nurse scolded me for letting him come in our room.  I assured her I was equally as surprised as she was.  Apparently Rick and Casey got scolded too.  There will be no more room visits for a while...
Willie's back pain calmed down a lot this weekend and he has no pain today.  His white blood cell count came up to 0.9 yesterday and the nurse told us he is now allowed to leave the room.  We went for a walk in the hall at 10 PM last night.  You would think that time of night would be quiet in a cancer unit, but the halls are always buzzing with nurses around here.  Willie looked like a celebrity as he pushed his IV pole through the hall.  Every nurse and CNA that saw him gave him a thumbs up and offered encouragement.  We have had nearly every one of them in our room at some point so it was like being on a parade in front of our friends.
This morning we got more good news from his Doctors.  They are really pleased with his blood counts and assured us that the rapid rise in white cells indicates that his body is accepting the new cells.  They are going to begin switching his IV meds to an oral form in preparation for us to leave.  They want him to increase his food and fluid intake and be on all oral meds before we can go. It seems too soon to be leaving, but we will be living locally and checking in at the cancer center 3 times a week for the next 2-3 months.
The nurse practitioner came in to discuss this plan for the next few days.  She was standing at the end of the bed and reached out to hold Willie's ankles.
"You have done really well." She said, looking him deeply in the eye.
"Thank you." He replied.
"You're welcome.  I have been really impressed by how you have handled everything.  You've done a fantastic job."
It was like she had pinned an award on Willie's chest. 
She has been with us since the first day when Willie was throwing his guts up from the radiation treatments.  She has seen his ups and downs and a compliment from someone who has been along for the entire ride is most appreciated.
Now I'm off to see if the boss wants to take another victory lap around the place.
Here's to an even higher white blood count tonight!

No Pain. No Gain.

2 minutes after IV pain meds, Willie fell alseep with Donkey Kong arms.

My brother was in town for business last night and I met him for dinner.  We had some fabulous burgers on gluten free buns!  I called Willie after dinner to check in and he said his fever had spiked again.  When we got back to the hospital he was hot an uncomfortable.
His platelets had dropped to 7 so he got an infusion.  I didn't want to leave until the infusion was done since he had a reaction last time.  The platelets went in without a hitch and his fever broke around midnight. 
I was exhausted so he told me to sleep in which I did, and it was awesome!  I woke up at 8 AM today and called Willie.
"My fever is back up." He sounded distressed "And I have this horrible pain in my lower back."
"Have you been peeing?" I thought perhaps it was his kidneys.
"I guess so.  I don't know.  It hurts."
The doctors hadn't come in yet so I hurried to shower and get to the hospital.  I hoped to make it before they rounded, but I missed them by 5 minutes.  When I came into the room, Willie was writhing in pain and his nurse was giving him some IV pain meds.
"What did the doctors say?" I asked.
He winced then groaned.
"They said he is having engraftment pain." The nurse spoke for him "It is actually a good thing because it tell us that the new cells are grafting into the empty marrow."
"It doesn't feel like a good thing!" Willie shouted.
He breathed heavily while he waited for the pain meds to kick in.  Within 30 seconds his breathing began to slow and he laid back on the bed.
After a few minutes he opened his eyes and looked at me as if I had just come into the room.
"Hey baby." He said."Was it nice to sleep in?"
The pain meds were definitely working!
I thanked him for letting me sleep and asked about his night.  He said the back pain had started about 3 AM and hadn't let up all night.  The pain meds help, but only for about an hour.  We did what we always do at times like these and consulted google.  I found an article from Colombia University that described the process of bone marrow engraftment.
"Listen to this," I said to Willie "This article says that engraftment pain feels like falling on ice and smashing your tailbone."
"That sounds about right." He agreed, rubbing his hips. "It's awful."
About an hour later, the nurse came back into the room with an announcement.
"I wanted to give you guys a heads up so you are completely blindsided." She said.
Willie opened his eyes and I turned toward her. 
She had peaked our interest.  What could she possibly tell us?
"We just finished our team meeting about your case and you will most likely be leaving the hospital on Wednesday."
"WHAT?!" I shouted at her.  It didn't make any sense that we are anywhere near going home based on the state he is in today.
"That's right.  This engraftment pain tells us that his counts will start rising this weekend.  We think he will be fine to go home by Wednesday."
I was stunned.
Willie looked like he was asleep.
I nudged him.
"Did you hear that?  What do you think of that?"
His face was emotionless and I didn't expect an answer in his pain med haze.
"That makes me really happy." He finally said with a medicated smile covering his face.
The nurse left him to sleep with a promise to return in an hour.
His pain meds ran out before then and he was in a lot of pain when she returned.
"Can I get a pain pump?" He pleaded.
"No, I'm sorry, you can't" The nurse replied "You are too far into recovery to start a pump.  You'll just have to tough it out with the IV meds we have for you."
I felt like I was witnessing a woman in labor who begs for an epidural only to be informed it was too late. 
He's going to have to get through this the natural way.
With A LOT of fentanyl and oxycodone!
The good news is that the pain is temporary.  No one can define how long temporary is, but we're hoping this is a one day thing.
I hate that he has endure this pain, but I'm so happy for the sign that his body is responding well to the cells.  I never thought I would be grateful for my husband to have debilitating back pain, but that's what I'm putting on my gratitude chain tonight.  . 
No Pain.  No Gain!

Day 9. Feeling Fine.

A silly amount of IV bags.  The TPN is the Yellow bag.

The doctors start their rounds early and because we are the 3rd room in the rotation, they usually arrive between 8:00 AM and 8:15 AM.  I am staying at a cottage that is owned by one of our friend's relatives.  It is a short 2 miles away from the hospital, but it takes 10-15 minutes to get there.  The traffic is completely unpredictable and although I leave the cottage at 7:40 every morning, I have arrived at the hospital any time between 8:00 and 8:30. 
This morning I left 10 minutes late and drove like the wind to make it to the hospital before the doctors rounded.  It was divine intervention as all the lights were green and I made it to his room at 8:05.  The second I sat down, the team of doctors entered the room. 
He has a double door room to keep germs out.  The first room has a sink, with gloves and masks so the nurses and visitors can sanitize before entering.  It is a small room, about 6'x8'.  Every morning, the team of 8-12 doctors huddles in the first room while they wait for the first door to shut before opening the second door.  We had the blinds open on his door this morning and I couldn't help but laugh as I watched them all crammed in the small space like sardines in a can. 
They came in the room and asked about his progress. 
He had nothing to report. 
The nurse practitioner did her morning exam, looking in his mouth then listening to his heart and lungs. 
"You look great!" She said when she was finished.  "We are going to start you on TPN today."
Willie nodded.
TPN is short for total parenteral nutrition. It is a bag of liquid that contains pre-digested calories that are pumped directly into the veins.  There is no digestion required since it bypasses the gut, so it is a good solution cancer patients with compromised digestion. I learned about TPN long ago when I was studying nutrition in college.  The teacher informed our class that this source of nutrition was a last resort and only used for dying cancer patients and the elderly.  Since then, I have associated TPN with death. With this mindset, it was naturally alarming to me when we started the transplant process and they informed us that TPN would probably be part inevitable. 
The radiation and chemotherapy he received damaged the cells that line his gut so his digestion is not optimal.  On top of that he has nausea and no appetite so he hasn't been too interested in eating.  I have changed my feelings on TPN after watching him eat practically nothing for a week.  The last thing we need is for him to leave the hospital weak and malnourished from starvation.  The TPN will supply him with the protein, fat and calories he needs to avoid muscle loss and tissue break down.  He will still continue to eat whenever he feels like it. 
I checked on Casey today and he is looking a bit better.  He was sitting up in his chair typing on a laptop.  I asked about the surgery yesterday and he said they couldn't do it because he counts are too low.  His new complaint are that his feet keep swelling and he has to take a diuretic to keep the fluid off.  He wanted to know if Willie is having the same problem, but I had to tell him no.
Willie hasn't had any problems to speak of.
He has a mild rash on his chest and back that itches at times and he still has one patch of mucositis on his tongue that looks like a canker sore, but all in all, he is doing fantastic!  He is doing so well that I have very little to blog about.  The fact that he has stunned me into a silence is a miracle indeed!  Thank you for your continual prayers.  They are creating daily miracles for us.  Keep them coming!

Day 8. Doing Great!

Today I am overwhelmingly grateful.  Willie is feeling good and continues to handle things like a rock star.  He kicked the fever again last night and so far today has been fever free.  His hair jumped ship yesterday and started falling out all at once so we buzzed it all off. 
The hair loss is curious process.  Before cancer, I had only seen movies that depicted how the process goes.  In the movies a person receives chemo and loses his hair instantly.  I was expecting that to happen to Willie the first time he was admitted in the hospital.  I would see other patients walking the halls with patches of hair on their balding heads and I wrongly assumed that their hair was in the process of growing back. The reality is that the hair loss doesn't happen right after treatment and when it does begin to fall it takes weeks to lose it all.  I finally understood the strange hair patterns on the other patients when Willie lost his hair the first time.  It fell out haphazardly with patches of hair scattered among bald spots. 
I have noticed how much easier everything has been this time time around.  The first time his hair fell out I cried the whole time I shaved his head.  It was so emotional and raw.  Maybe I've become callous, or maybe it really is easier this time, but last night as I shaved his head I didn't feel any sadness. Part of me was relieved that we have made it this far in the process.  The hair falling out represents a passage of time that we have been eagerly awaiting.
We made a "Happy Day 7" card for Casey last night.  He is the 22 year old we met during radiation treatments.  His Dad comes to check on us or I got over to their room so we can keep up on the others progress.  Casey has not done nearly as well as Willie.  When I checked in on them last Saturday he had just got an IV pain pump installed and was feeling pretty happy.
"Hey Missy!" he said when I entered the room."Look at my pain pump." His speech was slurred and his eyes were barely open.
I oohed and awwed as he pointed to the giant pump plastic pump that had been attached to his IV pole.  The pump had a button attached to it that would allow him to press it every 15 minutes according to his pain. 
"There is this green button that makes me feel good when I press it."  He smiled at the button like it was a long lost friend.  "Do you want to see?"
"Oh you don't need to press it for me."
"No, No." He interrupted, "I want to."
He pressed the button and it turned red.
"Oh no Dad," he exclaimed "It's red now."
His dad laughed to himself and shook his head. 
"Remember Casey, that it is green when it's OK to press it then it turns red until it's OK to have more."
"Oh yeah," Casey laid back and smiled. "I remember."
I doubt he remembers anything, but I'm glad he's not in pain.
Last night when I went to check on him he was all alone.  The room was dark and I wasn't sure if he was awake.  He opened his eyes and slurred something at me that sounded like "come in."
I could not believe how bad he looked.  He had dried blood around his mouth and on his teeth, his color was pale and he looked exhausted.
"How are you doing?" I asked.
He just groaned.
"Not looking so good." I said sympathetically.
"I'm not excited about tomorrow." He slurred.
"What's happening tomorrow?"
"I have to have surgery on my throat."
"What for?" I was surprised.
"I threw up last night and tore my esophagus.  They have to go in and repair it tomorrow."
"That's horrible."  I said, holding back tears.
I gave him the card and he smiled and thanked me.  He has been alone for the past two days as his Dad is not feeling well and can't come to the hospital.  It seems he is living the worst case scenario.  I told him I would check on him tomorrow and hurried into the hall before I burst into tears.  I cried for Casey and his pain, but the tears were mostly out of gratitude for the miracle we are receiving in Willie's recovery.

I came back and updated Willie on Casey and we talked about how lucky we are.  We started making a gratitude chain for each day we have been here.  I learned long ago that the highest form of energy is gratitude.  A sincere "thank you" can turn a bad mood into a better one and transform the direction any situation is going.  We talked about the past 7 days and created a link in the chain for something we were grateful for each day of the journey so far.  Our number one link says: The donor.  Other links state our gratitude for our family, the doctors and nurse and each other. 
"What are you thankful for today?" I asked Willie as we got to the chain for day 7.
"I'm happy that I can still eat." He said and I wrote it on the link.
"I'm grateful that you are doing so well." I said.  I thought of Casey as I wrote it and fought back tears. 
We are so incredibly blessed.
Willie got red blood cells last night and had no reaction to them.  He will probably need more platelets today or tomorrow and more red blood cells to come.  The coming week will be a whole lot of waiting for his white blood count to start rising.  In the meantime they will keep replacing his reds and platelets as much as needed.  The doctors are entirely impressed with his progress.  I imagine he is their favorite patient because he is so easy. 
Thank you for the prayers. We are grateful for all of you!

Day 7.

We had a really nice weekend.  Willie's Mom and sister came to visit and we had a good time.  Willie felt good all weekend and avoided the dreaded fever.  He got platelets on Friday night and had a reaction that made his right eye swell up, but it went back to normal by Saturday afternoon.  We're not sure that we like the way they do lab draws and transfusions on this unit.  They only draw labs one time per day in the late evening and if he needs blood products they do it while he sleeps.  That's the theory, at least.  The problem with giving him blood at night is that they keep coming in and waking him up so he gets no sleep.
Yesterday morning the dreaded fever arrived.  Willie was feeling fine and sitting up in the chair when his temp tested at 38.3 degrees Celsius which is 100.9 degrees Fahrenheit.  The threshold for a fever is 38 degrees so the nurse flew into action.  She took blood cultures to check for infection and started him on IV antibiotics.  20 minutes later his temperature was normal again.  The nurse was baffled and we explained to her that this is just the way Willie rolls.  When he was in the cancer unit for his first round of chemo he had a fevers, but they rarely lasted more than an hour.  He seems to be following that same pattern again.
The fever stayed away throughout the day, but crept back up around 8 PM.  They drew labs and discovered he was silly low in platelets and red blood cells.  This is why we wished they ran labs twice a day like they did last time he was in the hospital.  His counts have a tendency to plummet with no warning and they can go from a normal range to a dangerously low range in less than 24 hours.  We learned this the hard way after his third round of chemo when he had to be hospitalized for counts that took the plunge just hours after he tested normal.
He got a unit of blood and a unit of platelets and his fever tapered off.  He said he had a fever on and off through the night, but it broke early this morning and he is feeling fine now.  The doctors are amazed at how well he is doing.  He has only developed one mouth sore, but he is still able to eat and drink, although he's not consuming much.  They say he is doing 90% better than any of the cases they have seen and that he is the easiest patient on the entire floor.
He is such a champ!
They are talking about putting him on IV nutrition today because he is not eating enough to keep his weight and energy up.  He has no appetite and is really tired so eating is a chore.  Most patients are put on IV nutrition on day 2 or 3 so Willie has held out a long time. 
Thank you all for your thoughts and prayers.  More updates to come!

Day 4

No updates today.  Willie is still doing well and has avoided the mouth sores so far! He is tired and sleeping a lot, but we are encouraged by how impressed the doctors are with how he's handling everything. His mom and sister are visiting this weekend. We will see you back on Monday. Happy weekend to all!

Day 2

The doctors rounded early this morning.  I got here about 8 AM and they came in soon after.  There were so many of them, it was like watching clowns pile out of a clown car as they entered the room.  I counted 12 people in this small space and there were a few hanging outside in the hall.  The nurse practitioner who usually talks to Willie had the day off so we had a new woman asking questions.  She checked his breathing and listened to his heart then stood back.
"You look good," she said, with a touch of surprise "just keep doing what you're doing and we'll hope things keep going well!"
The other 11 heads in the room nodded in agreement and there were a few thumbs up given.  With that, the group turned and piled out of the room.  Only his nurse stayed behind.
"Well that was certainly fast," she said "You're pretty boring which is a good thing on this unit."
"I hope I stay boring then" Willie replied and she smiled.
"So far so good!" She said, then left the room.
About an hour later a knock sounded on the outside door.  Willie's isolated room has two set of doors with a small sanitation room in between.  We shouted for them to come in then we heard voices in the middle room.  It was a man and a woman discussing the health of a patient.  They talked for a few minutes then knocked in the inside door.
"Come in," We shouted in unison.
A tall man in a white lab coat entered followed by a short Asian woman in a black dress.  She was carrying a black back pack that she set on the floor.
"We are from the dermatology department and we're here to look at the rash you have." The man said.
"Ok," Willie said "but it's really not that bad."
"We'd still like to see it if that's ok." He replied
Willie removed his shirt to show them the few bumps that have cropped up on his chest.
"We understand you have been having fevers." The doctor continued.
"Uh...No" Willie answered
"Well our notes say you have a bit of a neutropenic fever."
"I don't think that's me."
"It says you've had the rash for a week?"
"I haven't been here a week."
"Hmmmm," he stopped looking at the rash to pull a paper from his pocket "Are you not Mr. Chow?"
"Nope" Willie said.  I knew he was holding back on saying something like "Do I look like a Mr. Chow?"
"Oh, well it seems we are in the wrong room!"
The woman laughed from the corner and opened the door to leave.
"Sorry to bother you," she said as she left "And your rash looks fine, by the way."
They left and we looked at each other and laughed.
That was our excitement for the day.
Willie has been feeling pretty good.  He is tired and is sleeping a lot, but otherwise, he is doing really well.  We are hoping for more days like this!

Day 1 - Musical Beds

Today began with news from the nurse that Will's white blood cell count had dropped to 0.5 and he therefore had qualified for a private room.  It's funny how they work the private rooms in this unit. One has to "qualify" for the room by having labs bad enough to merit solitude.  When lab counts begin to rise, those in isolation get booted back to shared rooms. 
Today Willie was the lucky one.  The nurses went to work trying to decide who they could move to a shared room to free up a private room. I wonder what they do when the patients in the private rooms aren't well enough to move to shared while those in shared need a private room.  It was organized chaos at its finest.

Around 10 AM a woman with a harp showed up at our door and offered to serenade us.  She wheeled a mini harp in the room that was attached to a dolly.  The music was enchanting and it lulled Willie to sleep.  She didn't stay long, but we were glad she came.
The day got even better when the nurse came in and informed me that a massage therapist was coming in the afternoon to give massages to family members.  She wondered if I wanted one.
I think I may have shouted "Yes!" back at her,  I was so excited.
I had a lovely chair massage that made all the problems in the world melt away.  I felt like walking Jello when I returned to the room. 
The nurse came by and told us that Willie's room wasn't ready, but they needed to move him to another room so they could clean his room and move another patient into his room to free up the private room.  She said it's the game of "musical beds" they play every time they change rooms.
It's a ridiculous process to watch.  They cleaned the interim room and moved the bed and furniture into the hall.  Then they pushed the bed (with Willie in it) into the room and moved his night stand and chairs with him.  We were told we would wait in that room for an hour, but it turned into 3 hours! When they finally had the private room cleaned they moved all of the furniture out of it and moved us in.  They then got busy cleaning the room we had been in for 3 hours! 
It seemed like an unnecessary amount of moving things and cleaning things for my taste, but who am I to judge?
Our new room is small, but it's private which is a fair trade. Willie has been feeling pretty good today.  He got a dose of Methotrexate which is an anti-rejection medication to keep his body from refusing the new cells.  This med comes with side effects of mouth sores just like the chemo does.  So far his mouth feels fine so we are keeping our fingers crossed that he will be able to avoid anything too terrible.
That's all the news from our fairly boring day.
Boring is good though.
Very good!

Transplant Day!

Today is day zero. 
Today we start life over. 
I woke up this morning feeling a strange level of excitement.  It was masked under a heavy cloak of anxiety, but hidden in the bottom of my mess of emotions was a tiny sliver of excitement at the hope today is bringing.  I got a large tray of cookies and a candle of the number zero to celebrate Willie's new birthday.  We will give them to the doctors and nurses when they come around. 
When I arrived this morning Willie was feeling nauseous and had just thrown up.  His upper lip is really swollen and he said he is starting to feel his mouth swell. The nurses were running late with his anti nausea medication this morning which landed him in that mess.  As soon as he got the IV Zofran he began feeling better and was able to go back to sleep. 
The nurse came in and informed us that his transplant will take place at 12:30 PM.  The donor cells will arrive in a bag that looks identical to a blood transfusion and he will take Benadryl before receiving the cells just like he does for any other transfusion. 
In essence, the transfusion is nothing more than receiving a bag of cells from someone else. It is the same process as receiving blood or platelets. They don't anticipate any reaction or any visible side effects from the cells today or many days from now. (and hopefully never!)
It's a funny process to consider.  There are no needles, no surgeons, no anesthetic, no stitches to be removed.  It is unlike anything that comes to mind when you hear the word transplant. The drudgery that lies ahead is not actually from the new cells, but from the chemo and radiation he had to receive to get ready for them.  It's the ultimate catch 22 because he had to first kill off all of his cells in order to accept the new ones, but in killing the old cells he will have to suffer the effects.  On the other hand, if they just gave him the new cells without killing the old, the new cells would kill him.
It brings a whole new meaning to the phrase "what doesn't kill you will make you stronger!"
This morning I watched a video on youtube that really spoke to me.  It was a good reminder that we are under the watchful care of a loving God.  This trial we are going through is simply some "pruning" arranged by the wise Gardner who knows that we must be clipped in order to grow.  I believe that with all my heart and know that we will come out of this stronger, wiser, healthier, and better looking!

His new cells arrived just after 12:30PM.  The middle Eastern doctor who works with Dr. Laport came in carrying the bag like a waitress with a loaded tray.
"Your new cells sir," she said with a crinkle smile in her eyes.
The nurse hooked up the cells in no time and soon the red fluid was travelling down the line.  The doctor and nurse watched as the stream of red cells entered his body.
"First cells in at 12:47 PM" the doctor stated and made some notes in the computer.
"This will take about an hour so you can go ahead and make yourself comfortable." She said.
We decided to watch a movie to keep us distracted from the emptying bag.
The nurse stayed and monitored his temperature and vitals during the first half hour then returned at the end. 
"Last cell in at 2:10 PM" she announced as she noted it in the computer.

"Congratulations Mr. Beavers," she said and we could feel her smile through the mask "You're a new man!"
"More like a new woman!" Willie corrected and we all laughed.
His donor cells came from a woman in her late 50's.  We learned today that she had them harvested through apheresis.  This is an easy way to collect the cells that involves her getting a shot daily for 4 days to boost her cell count then she sat at a machine for 4 hours to remove the stem cells form her blood.  As Will's body accepts her cells, he will take on her blood type, allergies and markers in her blood.  They warned us that if he is ever involved in a crime where his blood is part of the evidence, she will be the one to be found at fault.  If he was ever considering a life of crime, now is the time!
We lucked out on the allergies because her only allergies are to penicillin which is the same allergy Willie has.
He has been resting since the transplant.  The nurses came in with a birthday cake to sing to him, but he was sleeping so they said they hope to return soon.  There has been a lot of congratulations from workers on the floor.  They have really made the day special.
Thank you, thank you, thank you for all your prayers and words of encouragement today.  We were blown away by the amount of texts, emails and facebook messages we have received.  We are blessed to have such amazing people in our lives. 
Here's to a fabulous day 1!

Day -1. Transplant Tomorrow!

The Last Chemo Treatment EVER!

The Cytoxin treatments were uneventful.  He had his first dose on Saturday night and tolerated it well with no side effects.  Dr. Laport came to check in on Sunday afternoon.
"So you are telling me you had no nausea or pain from the chemo?" she asked in unbelief when Willie reported he felt fine.
She put her hands on her tiny hips and tilted her head sideways as she observed him.
"Wow!" she said, her eyes widening "You look great!" 
Everyone is required to wear yellow masks on the transplant floor at all times so we couldn't see anything but her eyes which showed her surprise.  I imagine she was smiling below the mask.
"You are the first patient I've had that experienced nothing from the Cytoxin, which is good.  The other good news is tonight you will receive your last dose of chemo EVER."  She said the last word with deep emphasis.
"I like the way that sounds," Willie said, smiling.
"You're going to do fine," Dr. Laport patted Willie on the leg "Judging by the way you have handled the chemo, you are going to handle everything well."
It was a good thing to hear.
Willie got his last dose of chemo EVER late last night and woke up feeling fine today.  He got a new roommate last night that was a much welcomed relief from the previous talkative roommate.  The new guy is a young Doctor in his mid 30's who only got diagnosed in August.  His sister was a perfect match so he went straight to transplant and he just got released from isolation.  He looked fantastic for only having the transplant 3 weeks ago.  He was exactly the inspiration we needed and he and Willie spent the day talking about their experiences.  I really enjoyed talking to his wife and we struck up an instant friendship. They got released late this afternoon and they are currently moving in a new roommate. 
This floor of the hospital is certainly busy!
Tomorrow is transplant day.  The drs refer to tomorrow as "day zero."  Every day after transplant is counted upward after that.  They also refer to this day as Willie's new birthday.  It is the day that he will be given a new shot at a cancer free life. 
We are most grateful to the donor today for her selfless gift to us.  She should have had the procedure done yesterday so we kept her in our thoughts and prayers that all went well and she is recovering quickly.  There are no words powerful enough to express our thanks to her.  She is literally giving Willie a new life. We are so blessed to live in a time of such great medical miracles that this procedure exists.   It boggles my mind that it is even possible to destroy one persons immune system and replace it with another.
That to me, that is magic.
Please keep Willie in your prayers tomorrow and if you feel so inclined, you can sing "Happy New Birthday" to him in your mind.

Cytoxin Begins

I called the hospital at 7:30 AM this morning, as instructed, and was told they would have a room for us before noon and that they would call me when it was ready. We packed up the apartment and moved everything to the cottage where I will be staying while Willie is inpatient. By 2 PM when we hadn't heard anything I called the hospital again and was told to come right now! It seems all hospitals find joy in making people wait for long amounts of time only to fly into overdrive!

We got checked into his room which he is currently sharing with an older guy who has been on the phone since we got here. He's a talker!

We will move to a private room on Wednesday which will be nice. Willie is currently getting a liter of IV fluid then they will start his chemo which is named Cytoxin. It bothers me that a toxic substance like chemo is arrogant enough to waltz around with the word "toxin" in its name. We already know its toxic! We could do without the reminder every time the nurses announce his Cytoxin is on the way.

The chemo infuses over 2 hours and he will get it tonight and tomorrow night. Monday he gets a day off from all treatments then the transplant is on Tuesday. 

I will update you all on Monday. 

Happy weekend to all!

Thank you for your prayers and encouragement this week. Every positive thought helps! 

The Award

The street set up outside of the apartment complex we're staying at is kind of ridiculous.  When you exit the complex you need to turn left, then right to get on the freeway.  There is an annoying barrier in the middle of the road so in order to go left you must drive a half mile down the road and take a U-turn on Easy Street.  I find irony in the fact that every morning we have the opportunity to take a ride down Easy Street, but instead we turn around and go back to the hospital!
No Easy Street for us!
Today Willie was feeling pretty good.  We had one of our favorite nurses at the cancer center who brightened the day with talk of dogs and football.  He slept most of the day between his radiation treatments.  When he finished his last treatment he came out holding a piece of paper that he handed to me. 
"Ooooo, fancy!" I said, as I looked at the printed award in my hands. 
"I know!" he said through his mask.
"Hey," Casey said from across the room "Do I get an award?"
"I guess so" Willie answered.
They were both wearing their filter masks so it sounded more like muffled barking than conversation.  Casey's eyes wrinkled in a smile under his mask.
"I hope I get one!" he said "see you guys tomorrow!"
We left the radiation center without a bit of sadness that this part is over.
"This is a fabulous award!" I said then read it out loud as we walked "Congratulations! Willie Beavers has completed the prescribed radiation therapy treatments with high honors in courage, determination, and good spirit."
Willie looked at the award as I read it then chimed in.
"It should say 'Congratulations, you are now a turkey pot pie since we've baked you in our giant microwave all week!"
That's too funny!  I'm still laughing about that.
I pointed out the Stanford logo on top of the award
"I'm going to frame this and hang it on the wall.  People will think its' a degree from Stanford!"
"They'll think I'm a doctor!" he said.
We had been walking during this conversation and ended up at the front check in desk for the radiation department.
"Congratulations!" the receptionist shouted "you are all done!"
She is a nice woman in her mid 40's with thinning hair that she carefully combs over.  Her smile is warm and I have noticed that her bright red lipstick never seems faded.  We have seen her three times a day for the whole week and she has started to feel like an old friend.
"Look at this," Willie said, motioning to the award "We're going to hang it on the wall, people will think I graduated from Stanford!"
She laughed.
 "You ARE graduating from Stanford!" she replied.  "Good luck with everything!"
"We'll see you later," Willie said as he turned the corner.
I paused and looked back at her "In all kindness, I hope we don't see you again" I joked.
She smiled "I hope I don't see you either!"
It's a running joke in the cancer departments that no one ever wants to return so a "see you later" response is never welcomed.  We usually hear "good luck with things" or something along those lines.
We got in the elevator and Willie heaved a huge sigh of relief.
"Well that's one part done." he said, and I smiled at him.
"One done!" I copied.
Tomorrow we check in to the hospital and he begins chemotherapy.  The way the check in is set up is so silly.  They gave me a phone number with instruction to call for his check in time.  I called the number today and was scolded for calling a day ahead.  The nurse told me that they will not know what bed will be available until tomorrow morning.  I was instructed to call back at 7:30 AM tomorrow and they will tell me what time to check in which could be anywhere between 9 AM and 4 PM.  I hung up feeling like I had just ordered cable, complete with the ridiculous time windows. 
It's incredibly disorganized for Stanford, I feel.
Thank you all for your positive thoughts and prayers for Willie this week.  They obviously worked as he is now playing a video game and requesting a snack!
Happy Friday!

New Friends and a Dead Battery

We made a new friend today.  His name is Casey and he is scheduled to have a bone marrow transplant the same day as Willie.  I noticed him on Monday when he came into the radiation waiting room.  He was wearing a pair of heavy, black, military boots that stood in stark contrast to his blue hospital gown.  He stands well over 6 feet tall and is as broad as he is tall.  I have watched him over the past few days and marveled at how the radiation has seemed to have no effect on him.  He whizzes into each appointment, pulling his carry-on bag of fluid behind him like it was invisible, then sits by himself and drums his fingers on his legs to a beat that only he can hear.
Tonight it was just he and I in the waiting room and I interrupted his finger drumming to ask him about himself.  He informed me that he is 22 years old, from the central valley and has been battling cancer for a year and a half now.  On his 21st birthday he got diagnosed with a cancerous tumor on his lung that led to radiation and chemotherapy.  The mass shrunk quickly and he had 6 months of complete remission last year before he developed 2 different kinds of leukemia. 
"I'm an overachiever," he said flatly "I didn't stop at one kind of cancer, I had to get 3."
I wasn't sure if it was mean to be funny, but I smiled back at him
"Well you must be excited about the transplant then.  It should be a cure for you!"
"Yeah," he shrugged "I've been on life support three times and I'm not even supposed to be alive now.  The way I see it, if the transplant works, it works, if it doesn't then it's over for me."
It was the saddest thing to hear.  I didn't know how to respond.
"Well at least it is hope." I said softly, but I think it was more to myself than to him.
"That's how my family is," he continued "they are all positive and say that it's going to work and that there is so much hope.  I don't know if Will feels the way I do, but me being the one with cancer, I don't really think that way.  I've heard the numbers and the realities and I know what can happen so we might as well be realistic."
He was wearing his filter mask which covered most of his face but his eyes; eyes that were far too sad for a 22 year old.
Willie came out and joined the rest of the conversation as we talked about the hospital and the plans to check in on Saturday.  He may end up being Will's roommate, we'll just have to wait and see.
As we walked out of the radiation clinic I filled Willie in on the conversation.  I told him about Casey's dismal feelings on the transplant and asked Willie if he felt the same.
"I've never been on life support," he said "I don't know how I would feel if I had been."
That's something I admire about Willie.  He is always careful to consider another persons circumstance in regard to their behavior.  Most of the time he helps me realize that I have never been in situations that most of the people I complain about are in so how can I judge?
"You know Casey has been dealing with cancer for almost two years," I said as we stepped into the elevator "When I hear stories like that it makes me think we have really been blessed that it's been such a short time for us."
"Yeah," he said "We are lucky."
It seems wrong to group cancer and luck in the same sentence, but we really have been lucky.  When all is said and done we will walk away from cancer after only one short year of mingling with it.  I will take that year with gratitude in contrast to the countless years some people deal with the awful disease.
We got in the car to drive home and decided to take the scenic route since last night we got stuck in rush hour traffic on our way home.  I stopped at the grocery store and Willie waited in the car.  When I got back in the car the engine wouldn't turn over. 
The battery was dead.
Worst.
Timing.
EVER!
I pulled out my phone and made two quick phone calls.  One to the car rental place, the other to a mechanic shop.  Both places closed in 10 minutes so I had to act fast to make sure it really was the battery that was the problem.
I went back into the store and asked the service desk if there was anyone who could help us.  The manager agreed to jump us from her own car.  We were parked with the front end next to a barrier so we needed to either move our car or move the car next to us.  The manager had the front desk page the owner of the car next to us and soon a dark haired Asian lady came running out.
"What happen to car?" she asked in heavy accented English.
"Nothing is wrong," the manager assured, "We just need you to move your car so I can help this lady jump her car."
She just stared at us, clearly not understanding.
"My car is broken," I said motioning "It does not drive."
"Oh...." she nodded, "But what wrong my car.  It get hit?"
"No, " the manager said, patiently "your car is fine, we just need you to move it or allow her to use your battery to jump her car."
She stared back at us blankly until the manager started using hand motions
"I need you to park your car there," she said making hand motions for driving and pointing across the lot to an open space.
"Ok,"she said back "my car ok?"
"Yes," we said back in unison, then she got in her car and moved.
The manager parked her car and hooked up the cables and our car started right up.
What a relief!
And what an awesome manager.  I can highly recommend the outstanding service we received at Whole Foods Market in Palo Alto.  It is the place to go for all your organic food and dead battery needs!
Willie is feeling pretty good today.  The nausea meds keep him pretty sleepy so he slept most of the day, but at least he wasn't feeling yucky.  He ate a muffin and some soup today which both felt like a victory for me.
Only one more day of radiation!
Goodnight all.

(Sorry no picture today.  For some reason it won't let me upload any tonight!)

A MUCH Better Day!

Today was a MUCH better day.  Willie slept through the night after we doped him up on anti-nausea meds.  He woke up this morning still feeling nauseous and dry heaved all the way to the hospital.  We were lucky to have the same nurse as yesterday so she got right to work getting him some medication.  I knew he was feeling better when he opened his eyes and looked across the room at me.  He pointed at his foot and shook it twice which is his way of asking for a foot rub.  I smiled at him moved my chair closer to rub his foot.  He smiled and closed his eyes, obviously pleased with himself for his clever communication. 
I spent the day sitting at the end of his bed occasionally rubbing his feet whenever he would wake up and shake his foot in demand.  He had three radiation treatments spaced 4 hours apart so we would go downstairs for his 8 minute treatment then come back up to the cancer center and wait the 4 hours.  He spent most of the time sleeping as he is feeling exhausted.
I knew he was really feeling better when he asked for some french fries.  We stopped on the way home and got him some.  He ate each fry like it was the last one on the planet.  So far they have stayed down just fine and he is sleeping again. 
That's all the updates for the day. 
Short and sweet. 
That's so unlike me!

Off to a Rocky Start

Last Friday I got a call from Dr. Laport, Willie's transplant doctor.
"I thought you are on vacation!" I said, after we said hello.
"I am," she said with a laugh "but I had to call you personally because I actually have good news this time!"
"Impossible!" I teased, although it is true she has been the bearer of bad news in recent months.
"We got the results from Willie's liver biopsy and everything looks perfect!  There is no scarring or tissue damage so it confirms that his numbers are high due to fatty liver."
I heaved a sigh of relief into the phone.  It was fantastic news!
"We'll go ahead with our planned schedule then and I'll see you guys next Wednesday!"
We said our goodbyes and I hung up, but not before another small wave of panic hit me.  I only had two days left at home. The time was going by too quickly.
We started to pack on Saturday afternoon, but hadn't made it very far by Sunday afternoon.  We had Willie's family and friends over for lunch and had a great time talking and laughing.  It was a recharge for our batteries that we were both happy to have.  Our plan was to leave for Stanford by 3-4PM on Sunday.  We didn't leave until 9 PM!  Willie just didn't want to go!
We got to our apartment at Stanford about 1:00 AM on Monday morning and had to be at the hospital at 7 AM.  Needless to say, we were both sleepy for his first appointment. 

Waiting for treament to begin

We had no idea what was planned for the day when we showed up at the cancer center.  His nurse started him on IV fluids and gave him some IV Zofran for nausea.  We have been warned that radiation can cause vomiting so they get try to stay ahead of the game with the meds.  At 8:30 we were sent downstairs for his first radiation treatment. 
The hallway down to the radiation department is long and cold.  It is on the bottom floor of the cancer center and passes by a series of windows that are covered half way by concrete stairs.  We were instructed to enter the only door on the left side of the hall.  When we entered it was a different world.  It looked looked like a lobby from a classy hotel with waist high banisters surrounding the room and calming colors of carpet and paint.  The chairs are set up around the perimeter of the room leaving every patient in the awkward position of trying to avoid eye contact with other patients.  Several people in the room were wearing hospital gowns and a nurse came out and instructed Willie to join them in gown wearing. She showed him to changing room and he came out a few minutes later in an open back gown.
A few minutes later he was taken back to the radiation room and I waited on pins and needles.  A woman came in with a soft pink hat covering her balding head.  She removed the hat and began fanning herself.  Moments later another woman entered with a shaved head and tired eyes.  Her feet were covered in cozy pink socks and tiny pink ribbons that gave away her fight with breast cancer.  There was no talking in the room, everyone kept silently to themselves.
Suddenly the door opened and an older woman entered with a flurry of movement and noise.  She plunked her purse on the seat next to me and sat down with a loud sigh.
"I'm so sick of cancer!" she announced to the room.
I watched as every eye in the room looked up cautiously toward the woman.  Several heads nodded and the woman in the pink socks laughed softly.
"My husband is getting radiation," she kept talking as if everyone had an interest in her story "I can tell you this, if I was getting radiation I wouldn't be nearly as angry as my husband is."
She paused to see if anyone was listening.  Most of  the eyes in the room were now buried in magazines.  Only the pink sock lady and I remained her targets.
"Can you believe he didn't like what I am wearing today, but I told him I don't care, it's the only thing I have clean!" she nudged me as she said this and I turned to look at her.
I had to stifle a laugh as I took in the full absurdity of her outfit.  She wore a heavy brown overcoat that is better suited for someone working construction, under that peaked out a neon green shirt with some writing and pictures on it that suggested it came from the juniors department at Walmart.  Her pants were an over sized pair of camo print with giant cargo pockets that could hold a medium sized cat.  She topped this all off with a multicolored hat that blended well with her outrageous eye makeup. 
She was a prize to behold.
"Yeah, cancer sucks..." she said again, this time to me "but you wouldn't understand that, you're too young!"
I stared back at her, but said nothing.  I didn't even know where to begin to respond to such an attack.
I wish I didn't understand cancer. 
I wish age qualified someone to be affected by the terrible disease. 
I wish I was too young.
"But you've got a pretty purse," she said, after a moment of silence "I like the way it shines." She pointed to the rhinestones on the outside of my purse and smiled at me like we were old friends.  Apparently if I can't understand cancer, at least I can have a pretty purse!
It was a stupid exchange, but it put me on edge.  When the nurse called my name I jumped out of my chair and nearly ran to the door.  Willie wasn't with her and I felt a bit of panic. 
"The nurse is waiting to meet with you and Willie." she said, as she lead me to an examination room.
"Is everything OK?" I asked, keeping my voice steady.
"Yes," she replied "this is what happens on the first day of radiation."
I relaxed a bit when I saw Willie sitting on a chair and looking the same he had when he left.  I don't know what I had expected from radiation, but the images in my mind were far worse than the reality.
"Did you feel anything?" I asked as I sat down.
"No," he shrugged "just my feet got tired from standing still so long."
We met with the nurse to discuss the plan for the week.  He will have New Year's Day off from treatments then receive 3 treatments on Wednesday, Thursday and Friday before being admitted on Saturday to start receiving chemo.

The carry on bag of water

We went back up to the cancer center after our meeting and met with the home health nurse.  He was a pleasant man of Asian decent with a jolly smile and an affinity for hearing himself talk.  He explained that Willie will be receiving continous IV fluids during the radiation treatment.  This means he will be receiving the IV when we go home.  He pulled out a 4 liter bag of water and set it on the table.  It was quite the sight.  He explained that Willie will get one of those bags infused every 27 hours.  He showed me how to work the pump then connected Willie to the IV and placed the bag in a black bag with wheels that looks like carry on luggage. 
It was about 11 AM by this time and Willie was starving.  We had ordered food long before that time, but it was yet to be seen.  The tray of food finally arrived around 11:45, but Willie was nauseous by that time.  He tried sipping water and eating crackers, but it didn't help.  He was still queasy at 1 PM when it was time for his next treatment.  The nurse got him a wheelchair and kicked us out to radiation, handing him a pink bucket for the road.
We made it out into the atrium before he threw up.  Willie doesn't do anything quietly and his retching noise is horrifyingly loud.  The sound echoed around the open hallways as he heaved over and over again.  Tears came to my eyes as I watched him bent over in pain. 
I have only seen him throw up a few times in our years together.  The first time he was sick was when we had been dating about a year.  I was living in Sacramento and had come up to Willows to visit for the weekend.  We had gone out to dinner and were watching a movie when he suddenly announced he was going to throw up and ran to the bathroom.  That was the first time I met his beastly grunt of a throw up noise.  It was as if all the walls in the house were shaking from the echo of his retch.  I recall sitting on the couch and staring straight forward in shock.  I didn't know how to respond.  I had heard time and again that in order to know if someone you are dating is the one, you must first see each other when you are ill. This was advice passed from one lovestruck teenager to another. I recall the explanation being that you must see your partner sick in order to see if your love could endure the illness.  If you still loved them afterward then it was meant to be!   Now I feel like that is the most ridiculous advice of all time, but at that moment on his couch the words echoed in my head and I flew into action in hopes of this illness being the confirmation of our destiny. 
Apparently the marriage advice worked for us.  I spent that weekend nursing him through a 24 hour flu and 2 short years later we were married....!
It took a few moments for the echo to leave the atrium when he finished throwing up. When all was silent he handed me the bucket and said
"Let's go."
I handed the bucket to a passing nurse and we continued downstairs.  He handled the second treatment well and we met afterward with the radiation doctor.  We told her about his throwing up and she assured us that unfortunately that is going to happen.
"I guess this means it's working though," Willie said, looking on the bright side.
Her laugh was unexpected as she was caught off guard by his remark
"I guess that's one way to look at it! They definitely turned the beam on!"
We went back up to the cancer center and the doctor and nurse were waiting in his room to discuss the throw up incident.  I was impressed at the speed and interest everyone was taking in Willie.  The Doctor wrote Willie a prescription for Zofran to take at home and we left for the day.
Last night was rocky. 
Willie threw up several times and hasn't kept anything down yet today.  We went back to the cancer center this afternoon and the same doctor from yesterday came to check in.  We told him about the constant heaving and he responded quickly


Snoozing in the apartment with his suitcase of water

"It's time for the big dogs then," he said "I will order you some IV treatments that should knock this out.  You'll get one today and one for the next two days."
We both smiled and thanked him and soon the IV began.
Our hopes were high that the results would be immediate, but 2 hours later Willie was still sitting on the side of the bed with a trash can in his lap.  He was still feeling quesy, but hasn't thrown up since and he is now sleeping on the couch so I'm hoping he will wake up with some relief from the nausea. 
I think we have learned in one short day that radiation is ALOT worse than chemotherapy.  We could use some prayers for the rest of the week.  I'm praying that he can make it through the rest of the treatments and that the doctors who work with him will be inspired on how they can best help him.  We are still in good spirits and I admire Willie's attitude in the face of trial.  He is stronger than cancer and will grit his teeth and see this through.
Happy New Year!!! 
We are looking forward to a year of adventure and healing!