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Sunday, September 14, 2014

Our Hail Mary Pass

The expression began in the 1930's at Notre Dame; the football team referred to a long range desperation pass with little chance of success as a "Hail Mary" pass. When Amanda and I found out I had relapsed again and sought out the CART19 treatment I began joking this was our "Hail Mary" pass. In other words, my cancer and I have been battling back and forth; now it's the fourth quarter and time is running out, it's time for that perfectly placed touch down pass!


As you know from our previous post we had a scary trip to the ICU just after Labor Day. With my immune system at zero I fell victim to a nasty, and nearly fatal infection. I am convinced that the faith and prayers of so many carried us through. I was released from the hospital on Thursday. I am extremely weak, and often tired, but I am alive and grateful.

On Friday I had another lumbar puncture with chemo. We pray it will come back clean as the last three have. We're just trying to stay busy and not worry about the results. We should know by Tuesday. If/when it is clean then we can finally move forward with the T-Cell treatment. Until then I am focused on regathering my strength and energy. I was uplifted by the following scripture this morning:

Isaiah 40:29,31 "He giveth power to the faint; and to them that have no might he increaseth strength...they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk and not faint."


Finally, I am so grateful for my amazing wife/friend/companion Amanda. I often feel that her journey is more difficult than my own. I've received such kind and inspiring words from friends and others but the real hero is my wife. She carries the burden of the unknown, the "how longs" and "what ifs". Trying to raise a son and care for her husband 1700 miles away from home in a strange city. Sleepless nights on awkward hospital furniture with blinking lights and monitors. Managing medical bills and insurance claims, medication infusions and aches and pains. Abandoning all other plans to be a caretaker, fundraiser, and nurse. Yes I may have ALL but she does it ALL. 

I love you Sweetheart, you are the most amazing person I know. Whatever I try to do "it wouldn't be enough" - but I'll do it anyway :)

Sunday, September 7, 2014

I Went Three Days Without You

This week there were three days that were the hardest days I've ever had so far in my life. They even trump the three days I was in the hospital in labor with Kez (I was admitted on a Thursday and didn't deliver until Saturday). We almost lost our dear daddy and husband to septic shock.

Keith, his dad, was taking a turn to stay with Marshall at the hospital one night. Marshall had finished a round of chemo and was waiting for his counts to recover and was completely neutropenic. When I am away from Marshall at the hospital I am not able to sleep well. That night I just finished watching Gravity and Marshall wanted to play a game of Ticket to Ride. That is one way we have to connect on our phones when we are apart and to help the time in the hospital seem to go faster.

We had finished our game around 12:30 am. At 3:16 am Marshall texted me saying he woke up with joint pain and a fever. I woke up right away and texted that I hoped it was a neutropenic fever (sometimes when you have no neutrophils, you get a fever). I asked him if Keith was asleep or if he knew what was going on and he said Keith knew. He proceeded to text about chest x-rays and antibiotics. I fell back asleep and at 5:27 I woke up out of nowhere and texted him to ask if he was able to get back to sleep. He did not respond so I went back to sleep thinking that's what he'd done. Fifteen minutes later my door opened abruptly by Lucile saying "Get up we are going to the hospital. Keith called and they are taking Marshall to the ICU because his blood pressure dropped". I was surprised with how calm I was for the drive, but I do remember saying, "I hate cancer!"

I kept texting and calling Marshall with no response so I knew something was really, really wrong.

When we got to the ICU Marshall was having an "episode". An episode where his whole face and neck were bright red, his blood pressure was critically low, and he was writhing in pain. He said it felt like bursting pressure in his face and neck. It was extremely scary. He was already on 2 vaso pressers (blood pressure meds) and right away they had me as his agent sign some consent forms for a central line, an arterial line, and a ventilator. A doctor came in making sure that Marshall wanted to be resuscitated if he lost consciousness.

Keith and Lucile (Marshall's parents) were there and we were all rushed out to the family waiting room while they did the procedure. When we were finally able to come back in Marshall had a large cable with many protruding lines out his neck. It surprised me because they told me it would go in his chest. The doctor explained they placed it there because it makes it easier to access his vital organs. He was also in the middle of another "episode" explained above and they were unable to give him pain medications because they would lower his blood pressure even more.



They quickly pulled the picc line out of his arm in case that was the source of infection. The rest of the day and into the night his blood pressure was terribly low. I was tense all over. Not as tense as he was. I hadn't eaten and when Keith got us some Jimmy Johns sandwiches in the afternoon I admit it tasted like cardboard, but I ate it knowing I needed to take care of myself so I'm not a bigger burden to the situation at hand. A very kind member of the church came to help Keith administer a blessing to his son. The blessing was promising and for the first time that day I remember having some feeling come back to my body and crying. Up to that point I had been numb without realizing it. Lucile went to take Keith home and said she'd be back.

Marshall asked if his wife was in the room. I assured him I was and kept rubbing his feet so he'd
know I was there and trying to help ease his pain in any way. He requested that I go over his advanced directive with his mother and when she came back we read through the document and his end of life decisions with more tears. I studied end of life decisions thoroughly when I was a teachers aid for bioethics in college yet I admitted to my mother in law that it was different with my own husband. My emotions were raw and I knew that my emotions would play a huge part in making a critical decision at that point. Marshall has chosen me as his agent. Probably due to the fact that I am well educated in this field, but at that moment I understood why someone would back down from that position. The pressure of being an advocate for someone I have known for almost six years and three of those we have been fighting cancer was overwhelming. I didn't want Marshall's family to blame me or hate me if they disagreed on a medical intervention. Lucile assured me that they would support me and discuss the critical decisions if needed.

The night calmed with Marshall's episodes also calming. That reassured the doctors that it probably
was the picc line that caused the infection. Lucile and I both attempted to sleep in that tiny room sharing the one pull out chair. I was not so successful because I kept popping up to look at the monitors with every beep.

The morning brought results of gram negative rods growing in Marshall's blood cultures. For those science nerds like me, detailed speciation would later show the specific bacteria as enterobacter. These bacteria are "pathogenic and cause opportunistic infections in immunocompromised and usually hospitalized patients". It's generally caused by some form of mechanical site and in Marshall's case, they believe it was from his picc line. The lab is still growing his bacteria to see which specific antibiotic is killing it most effectively. I think it's awesome they can do that!


They had to pump liters and liters of fluid through Marshall's system in order to keep him alive while his blood pressure was so low. There is still fluid in his lungs. He is working through that with oxygen, lasix, and a spirometer. The bacteria causes the blood from the heart to shoot through the body system extremely fast so the cells and vital organs do not receive the oxygen and nutrients they need. For two days Marshall's limbs felt cold and clammy. The doctor explained that the body tries to compensate for this loss of blood flow by sending what it can to his vital organs so the legs and arms don't get as much blood flow. His kidney and liver numbers were getting higher and higher. If his blood pressure would have stayed down for much longer, there could be irreversible damage to these vital organs. His numbers are looking better each day but his liver levels are still higher than they should be. We are all hoping these levels continue to improve.

Now you may understand why Marshall feels and looks like he's been "run over by a truck" as Lucile says. I really, really appreciated when the director of the ICU himself came in early one morning to tell me, "Your husband is going to be ok. He is turning around." He also expressed his hopes for Marshall doing the CART-19 trial. As badly as I don't ever want to be back in that ICU again it is very possible after Marshall receives his re-engineered T-cells.


Marshall wrote a song called Ten Days last year when we had to avoid each other completely during his treatment because we were both ill simultaneously. While he was going through his ordeal in the MICU (medical intensive care unit), our communication was nearly non-existent and when he finally did try to talk it was very hard to understand him due to his paralyzed face and lack of oxygen. Here is a little play-off the lyrics of that song regarding this week's experience for me:


I went three days without you, and I nearly lost my mind.
I watched your every heartbeat even when you closed your eyes.
I went three days without my command. I went three days without my husband.
I went three days in a dark and lonesome ICU, and then you stabilized and then you spoke.
And you survived.

I went three days without you and I pleaded with others to pray.
Your name was in the temple at least a thousand times that day.
I went three days without your humor, I went three days without my animator.
I went three days in a dark and lonesome ICU and now you're recovering and now you stand.
And you survived.



When he finally was more aware of his surroundings, I had to get out of there! I had to see my son I hadn't seen for 3 days. I'm grateful Lucile was there so I could do that. There have been some moments as Marshall has fought this awful disease these last few years where that has not even been an option for me. I wondered if Marshall would even know I had been there for all that time because in the past when he has been out of it and I have been there he has come around and asked, "Where were you!?" I've had to explain I was there through the really rough moments but you just didn't know it.

This experience has helped me understand Our Savior a little better and reminds me of the poem "Footprints in the Sand". I know Marshall and our family are being carried by your prayers, packages, temple time, phone calls, texts, and any efforts to support and help bear this heavy load. There's another significance to this poem as well. When Marshall and I were dating, I remember on one particular date as we were contemplating being married for eternity in the temple that we were discussing what we want in our eternities together and what we want to create together. I said I wanted "sparkling silver sands" and he wanted "golden oceans". I know even if he hadn't pulled through this one that we would still have that opportunity to create our perfect beach in the eternities since we are sealed in the temple.


Special congratulations to my parents who are celebrating 35 years together today! So sorry that mom is here with me dad. I couldn't imagine getting through this last week without her here to help with Kez at any moment. "There will be nothing in this world that can defeat us" Thomas S. Monson. We could probably even create that sand and water now with the right materials and chemical reactions. Maybe even in about 3 days :)



Saturday, August 30, 2014

Gratitude as an Attidude

Greetings from Philly! I received a nice compliment from the cleaning person. Apparently they have been working on this floor for four years and have never seen anyone exercise like I have been. I figure I can't lay in bed all day trying to beat this disease. I've got to get up and fight!

My amazing mother Lucile has kept me company in the hospital when Amanda is busy with our son. It has been a joy to be in her presence, she has always been a great example of compassion and charity in my life. I also have my amazing mother-in-law to thank for her sacrifice. She has uprooted from her down home ranch in Idaho to help take care of our son so that he can be with his mom and dad during this crazy time in our lives.

Love these ladies!
I'd go on to thank my wife now, however it would take several more pages to describe the smallest fraction of the love and gratitude I have for her and the amazing strength she is to me.

What am I trying to say... I'm grateful. 

Yes, it looks pretty grim right now. I can't even close my mouth to swallow without using my finger to help push it shut, but I am grateful :)

In his recent conference address President Uchtdorf reminded us that, 

"It is easy to be grateful for things when life seems to be going our way. But what then of those times when what we wish for seems to be far out of reach?


Could I suggest that we see gratitude as a disposition, a way of life that stands independent of our current situation? In other words, I’m suggesting that instead of being thankful for things, we focus on being thankful in our circumstances—whatever they may be."

I continue to contemplate Joseph Smith's experience in Liberty Jail. Under the most horrific conditions he received some of the most amazing revelations that are recorded in the doctrine and covenants. In a CES fireside about the topic Elder Jeffrey R. Holland stated the following, 

"You can have sacred, revelatory, profoundly instructive experiences with the Lord in any situation you are in... In the most miserable experiences of your life. In the worst settings, while enduring the most painful injustices, when facing the most insurmountable odds and opposition you have ever faced."

 
When we show gratitude and humility to the Lord, he can and will edify us in any circumstance of life. Holland continues, "Every experience can become a redemptive experience if we remain bonded to our Father in Heaven through that difficulty."

In this way our gratitude becomes an act of faith. Faith that we trust in God's will and his plan for us. I am grateful because I have faith in an eternal plan of happiness.

D&C 78:19 "And he who receiveth all things with thankfulness shall be made glorious; and the things of this earth shall be added unto him, even an hundred fold, yea, more."

Tuesday, August 19, 2014

Now is the Time to be HEADstrong!

Last summer while struggling for a cure in Houston my heart was touched by an amazing community who united in love and gave of their time and talents for our family. Simultaneously three warriors had begun a journey across the entire country to raise money for cancer research and awareness. These two forces united in the heart of the city and my life was elevated. Within only two weeks of treatment I had already reached remission. 

I realized that I still had Miles 2 Give.

Although he can run for miles Kezman is never short on hugs and smiles!
Just when I thought my cancer journey was complete, I was shocked to find that I had only reached an apex; my cancer coaster came crashing down another cliff. We recently found that the leukemia has found its way into my brain. Irony... No... This is Destiny!

Now is the time to be HEADstrong! 

Tis' time for cancer to walk the plank!

As strong as I need my head to be in order to overcome this most recent challenge I am unable to ignore my heart. I want to thank my wife for sharing this scripture with our family the other night.

Proverbs 3:5

"Trust in the Lord with all thine heart; and lean not unto thine own understanding." 

As I'm amidst my third year battling cancer,there is much that I have found difficult to understand. What i do know is that I have seen more kindness, goodness, and selflessness; more of the pure love of Christ in my life than I have ever before. I am grateful to the Lord for his tender mercies each day, and thankful to each soul who has touched our family with your love.

Thursday, August 14, 2014

Remember, Remember, Remember

Early last week I had the opportunity to talk to Cheryl Colleluori, the President and CEO of the HEADstrong Foundation. She is also the mother of Nick Colleluori, a cancer warrior who devoted his final days to something bigger than himself. It is because of his desire to serve and his wonderful family that carried out his dying wish to create Headstrong, that we have a place to stay while I'm being treated in Philadelphia.


As I spoke with her last week I shared my gratitude, and let her know that I had been thinking about the sacrifice their family has made. I explained that it must be challenging to be reminded of her son's death every day. That I had lost a brother to suicide, and that even though the circumstances are not comparable, the heart ache from the loss of a loved one never really goes away.

I admitted that I almost felt guilty that I have days in which I become so distracted with my day to day activities that I don't really think about it. The thing is, the Colleluori family doesn't have that "luxury", they are surrounded by their son's legacy every day, and I'm sure that there are times when it is difficult. I told Cheryl that I admire her for that.

As I reflected back upon our conversation later in the week, I was reminded of another parent who lost a dearly beloved child. 

"For God so loved the world that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life." St John 3:16

'Carry your World' by Landon Cooper
It reminded me that I lost another brother, even Jesus Christ. He died on the cross and overcame death by the power of the resurrection that we too may share in this wonderful gift. It reminded me that when I was baptized I made a covenant to always remember Him and keep His commandments. 

Accordingly, in a poignant parallel,as the Colleluori's remember their son and brother every day, even when it's hard, even when it hurts - they remember and turn it into something beautiful and benevolent; I to will strive to remember every day, my brother, my Savior, my God, and turn sin into sanctification, suffering into serenity, and great worry into good works.

Monday, August 11, 2014

How to Speak Like a Philadelphian

After spending over a month in the city of brotherly love I have started to pick up some of the local accent. I thought I would share this tutorial with anyone who is interested in speaking the local language.


Replace the hard "A" vowel sound as in Ant with "ee-A"

Examples:
Ya = Yee-A
Cat = Kyat
Pants = Pyants

Precede the soft "A" sound as in Awesome or Drop with a short "oo" sound. The "oo" and "ah" should only take up one syllable. Shape your mouth like your going to say "oo" and then open up to the "ah" sound.

Examples:
Water = Woo-ah-der
Bought = Boo-aht
Audio = "oo-Ah-dio

The vowel sound in words that end in "or" such as Floor should also be pronounced this way but only open up half way to more of an "uh" sound.

Examples:
Door = Doo-uh
Fort = Foo-uht
Board = Boo-uhd

Finally, talk (t'oo'ahk) about your local sports (sp'oo'uhts) team with resentment, and then cheer for them like you can't (kyant) remember how many times they've let you down.

 

Sunday, August 10, 2014

Double Your Fun...

The headache started Tuesday night and greeted me promptly in the morning. After they prescribed some maximum strength headache meds my oncology team and I tried to figure out why these hives are lingering. Following a great deal of speculation they scheduled me to meet with the dermatologist. He put my mind at ease when he explained that it is not uncommon for hives to persist for several weeks. The downside to that however is that they don't want to give me my CART-19 cells while I have hives. Long story short - more delays.

They drew a lot of labs on Wednesday!
To complicate matters I began to have bouts of double vision that afternoon. They increased in duration throughout the week and by Friday I felt like I was living in a double mint gum commercial. We met with an Ophthalmologists at the Eye Emergency Department on Saturday. After extensive examinations, hours in waiting rooms, and an MRI, surprise surprise... they had no idea what was causing my ailment. Apparently causes of double vision are almost as difficult to decipher as causes of hives!


Things grew even more exciting at about 3:00 AM when I woke up with a headache like I'd been smacked in the back of the head with a two by four. Then I looked in the mirror I realized that I couldn't move the right side of my face. The fun part was that I got my first ride in an ambulance, although I must say it's probably more exciting in the drivers seat where you can see all the traffic move aside as you cruise through red lights.

There's a first for everything...

Well that's pretty much the update. I have more testing scheduled for tomorrow, Currently we're just hanging out on the 6th floor at the University of Pennsylvania hospital. I'm squinting at my laptop with one eye closed (otherwise it appears like I have two laptops). Which reminds me of a couple good things about double vision: one, you have twice as many friends come visit you in the hospital, and two, when you open up your wallet you have double the cash!

Valley Forge Fun