Scattered Pictures

Over the past few days, I've been having some memories come to me from my "three weeks of hell" back in June and July. I feel the need to get them down here in my blog for posterity's sake. For anyone besides myself who may be reading this, you can go to my post from July 12, 2013, called "An Unexpected Hiatus" if you want to know (or need a reminder of) what I reference by "three weeks of hell." Here are a few memories I now have...

I remember dreading night time. I had trouble communicating and knew I needed to sleep. Unfortunately, sleep is hard to come by when you have limited ability to move your own body or readjust your own position in bed. I remember wanting to have my feet raised or lowered, or being too hot or too cold, or needing to have my position in bed changed, and only being able to groan or grunt at my aide or nurse. Inside my head, I was screaming complete sentences at them, but grunts and groans were all that would come out. They had to play a guessing game with me and they got so frustrated that I couldn't communicate exactly what I needed. Other times, I knew I was uncomfortable, but couldn't even figure out for myself what I needed changed. My brain just wasn't working well enough.

My brain functioning at only about 1/2-power caused countless other issues. I had little to no warning for when I needed to use the bathroom, so I had to have a Foley catheter "placed." =0S  After a few days with it in, it was taken out, and I didn't want it back in. I still had trouble knowing when I had to go, but refused to have one put back in. Any time Noelle and a nurse would discuss it, I'd become lucid enough to cry out in protest, "Foleys suck!" Noelle says it was funny because there would be days when that was all I could say that was intelligible. I guess if something was important enough, I could break through the fog of incoherence just enough...

I remember trying to communicate with my nurses and aides and having them try to spell what I wanted or needed. Unfortunately, they would start with, "What does it start with?" and they'd have to guess. It was so weird to me that a) I could spell the word in my mind without a problem, but I couldn't speak it, and b) that my nurses and aides couldn't read my mind. I also got really mad when part-way through a word, it would change in my mind because the process took so long. Then the nurses would get REALLY confused! Someone told Noelle once that I had them spell something that wasn't even a real word.

I remember calling one of my CNA's (sorry, Kara) a moron. Why, I do not recall. She didn't deserve it, and I'll owe her forever for putting up with me and not holding it against me, except in jest. She knows I wasn't "with it," so she never got angry about it. Also, there was a time when my nurse, Ashley, and Noelle were helping me walk to the nurses' station to request a certain nurse for the next day, and I got a cramp in my calf. Ashley asked if I wanted her to massage it and I said I did. She began, and then I asked her to massage a little higher, then higher still. After 3 or 4 requests to massage higher up my leg, I shouted out, "Are you trying to get FRESH with me?!?" Noelle tells me that was a good moment because some of "the real John" came out. I was just joking with her after baiting her for the punchline, and it's one of the few truly happy memories from those three weeks.

As I mentioned in my post back in July, I had lots of tests run on my over the first two weeks to try to determine what could be done to fix the fact that the toxins weren't filtering out, or to determine what possible long-term effects they were causing or could cause. I don't remember many of the tests, but I remember being taken to various floors of the hospital in my bed or in a wheelchair. Noelle tells me that the vast majority of the tests were done with me in my bed, and only a couple were with me being transported in my wheelchair. I remember two MRIs. One was a regular one, but the other was one where they locked my head in place for close to an hour. That was THE WORST!!! Noelle sat outside the machine for that one, just touching and stroking my lower leg to let me know that she was there. I remember having a feeding tube put down my throat into my stomach and needing Noelle there because the techs that were trying to place it couldn't understand me. I gagged and gagged on the tube as it went through my nasal passages and down my throat. It was a pretty awful experience.

I remember Noelle leaving me one night and me crying because I felt so much better with her around. I didn't want to be babysat overnight by some orderly. I felt like Noelle was the only one who understood what I needed.

I remember when one of my doctors, Dr. Ashe, was playing the "squeeze my hand if..." communication game with me, and somehow she was doing it wrong. I don't remember what was "wrong" about the questions she was asking me, but there was a definite difference between how she was doing it and how Noelle did it. I got so frustrated that I looked at Noelle and shouted something like, "She's doing it wrong! Help her do it right!" And then I went back to not speaking. It was sort of like the issue with the Foley.

Another really good memory is when I started doing better with my physical therapists and started walking. The first time I made it to the nurses' station, Kim (one of my favorite nurses) was there. I said in my high, squeaky voice (from lack of use), "Hi, Kim." and then I started to cry. I was so happy to be out of my room and beginning to be mobile again. I remember Dr. Ashe walking a lap around the floor with me and giving me a big hug and telling me she was proud of me. I also remember the smiles on the nurses faces when I would pass the nurses' station. They were SO happy to see me up and about, and I felt so proud that I cried.

I remember playing Five Crowns with Noelle once, and being so confused and unable to think strategically. I finally gave up, showed my cards to Noelle, and asked, "would you tell me what to do?" I just couldn't figure it out.

I remember some visits from family and friends. On my birthday, my family members came to say hello. I remember hugging Christy (Linda) and telling her, "When I hug you, I see a purple frog." Then after hugging Gwen, I said, "When I hug you, I see a purple frog in dreadlocks." I vaguely remember George and Uraisa coming into the room, but I don't remember speaking with them or hugging them. I remember Noelle bringing the kids (against my protests), and having a hard time hugging them or talking with them. On other days, I remember the visits of others. For example, my home teacher, Jeff Kendall, came with Jeff (my brother) to give me a priesthood blessing by the laying on of hands. I remember Matt Moore and Joseph Scott each coming for a night. I vaguely remember Larry Hiller coming, as well. I also remember a day when Jeff brought his boys and talked with me for a little while. I remember having some trouble putting together sentences or staying focused on what I was trying to say from the beginning of a sentence to the end of it. But I remember telling him that I knew I was starting to get better and that I felt the Holy Ghost with me, comforting me. After a few minutes, I just couldn't focus on our conversation anymore. It was too hard for my brain. Jeff told me it was OK as I just sat there crying. Yes, I did a lot of crying.

Well, that's about as much as I can remember for now. Merry Christmas, and whether you're in the hospital or not, be sure to count your blessings.

The Best Way Out Is Always Through

Last night, I went to see the show "The Forgotten Carols" with Abigail. She earned a date with Noelle or I for getting straight A's in the first quarter of the school year. The show was great. I expected good, but not great. It was so good for me to get out, particularly to see a live, professional theatrical performance. After the show, the south end of the school was locked, and so Abby and I had to walk around from the north end of the school, where the auditorium is to the south end. It's a pretty big high school, so the long walk to the car in 17 degree weather kinda wore me out, but oh well. 

I've been doing OK lately. Not great, but not awful. My central line is out, which is awesome. After 14 months of having to shower with something hanging out of my arm or my chest, having to always cover it with Saran Cling Wrap and/or medical tape, it’s so nice to not have to worry about it. The spot where the catheter entered my chest is now completely healed up, with only a scar to show for it. Yippee Skippee! I get poked once a week now for my blood tests, but I can deal with that. It’s definitely a worth-while trade-off. The past few days, I've woken up feeling pretty nauseous. Today I wasn't able to eat anything until noon, and even then, it was just a piece of toast with some strawberry preserves. I was warned by my doctors that my appetite might drop off a bit when we got off of the prednisone (the steroid that was making me look like the elephant man), but I wasn't prepared for the nausea and the near-complete lack of an appetite. Hopefully it doesn't last forever.

I found this meme on Facebook today, as posted by the organization, StandUp2Cancer.org. 

It got me thinking...

Early on in my cancer struggle, somebody told me, "John, it isn't fair." I told them, "If God feels it's fair, then it's right." Since then I have gone through hell and I have come back. My journey is one that has taught me much. I would never give back what I've learned about God, my Savior, and myself through this journey. I agree wholeheartedly with Robert Frost who said, "The best way out is always through." Going through my trial has given me perspective and knowledge and understanding that I never could have gotten any other way. I have seen the selfishness that used to infect and pervade my soul. Now I see the selflessness that blesses and enlarges the souls of those around me. I have been forced to receive as those around me have felt compelled to give. Simon Peter said that Jesus went "went about doing good." So many of Jesus' angels in human form have done the same thing in behalf of me and my family. Their example has not been lost on me. So don't pity me for this thing called Cancer which infected my body, because it did not infect my soul, my spirit or my life. On the contrary, it taught me. It inspired me. It made me dig deep to find out who I really am, and determine who I really can become, want to become and vow to become. Some people view Cancer as a premature end to mortal life. I view it as an early preview and precursor to my immortal life which is yet to come. I am learning now how to live for eternity. I thank God for trusting me to learn from this experience by going through it.

I have had a change of heart about something. Easter used to be my favorite holiday, and Christmas my second favorite. You see, Christmas - the birth of Jesus of Nazareth, really - gains its meaning in the atonement that Jesus wrought 34 years later. Easter is when we celebrate Christ's victory over death (through the resurrection which we will all now receive) and over sin (through his suffering in the Garden of Gethsemane and on the cross, granting us the opportunity to repent of our sins and be forgiven). Without the atonement, the birth of Christ would have been far less meaningful, almost insignificant. For that reason, Easter has long been my favorite holiday. NOW, however... for the second Christmas in a row, I have been first-hand witness to, and the recipient of, such tremendous generosity and kindness that my heart has been changed. Christmas is and always has been Noelle's favorite holiday because there's an entire month or so of kindness and people going out of their way to be generous and giving to others. Now that I've had two Decembers in a row of experiencing that first-hand, plus one very special Christmas when I was 11 when people took care of our family when my dad was laid off, I can't help but say that Christmas is now my favorite holiday. Easter hasn't lost its meaning, but Christmas seems to inspire more goodness in people. I wish people would be this selfless and nice year-round, but in our society of increasing self-centeredness, where things that are fleeting and meaningless are adored and even idolized, one month of people turning outward and thinking of others first is pretty remarkable. Some friends (both known and anonymous) have given us money and gifts to help us provide a very memorable and merry Christmas for our children. It's humbling. It's inspiring. Noelle and I are already discussing how we can pay it forward in years to come. I'm sure I'll post more about it all after Christmas.

Anyway, I guess that's about it for now. If anyone else but me reads this, I hope you have a very merry Christmas!

November

So, November was a good month. It's a month when my thoughts always turn to the many things I have to be grateful for. We made our annual Gratitude Turkey poster, shown below, where we write down many of the blessings we're thankful for throughout the month. This year's poster was more full than I remember any previous years' posters being.

For every day of the month (some days I was a few behind), I made a Facebook post about something I was grateful for. Here's a list of the things for which I publicly expressed my gratitude:
1. Being cancer-free
2. Noelle
3. My membership in the church
4. My five kids
5. The scriptures
6. My siblings
7. My parents
8. My education
9. My home
10. Blessing the sacrament / Michael passing the sacrament for the first time
11. Food
12. Hand Sanitizer =0)
13. Utah
14. Santa Rosa
15. "The Guys"
16. Medicine
17. Music
18. Noelle's friends
19. Electronics
20. BYUH
21. Autumn
22. My ward
23. Opera
24. Books
25. My doctors, mid-levels and nurses on East 8
26. The removal of my central line
27. Faith and hope
28. (Thanksgiving) My Stem Cell Donor
29. The Christmas Season
30. Jesus Christ

When you have cancer and meet and get to know others with cancer, you're bound to meet with some bad news from time to time. Noelle and I have gotten to know some amazing people who are in the fight with various types of blood cancers, as well. November brought some bad news to a couple Noelle and I have gotten to know pretty well, Houston and Denise Holbrook. Houston went through absolute hell just to get to the point that they could do a transplant, and a few weeks after his transplant they did a bone marrow biopsy to find out if the graft was "taking" or not. The results showed that his leukemia had returned in force. 69% of his marrow was leukemic and this meant his transplant wasn't working, or at least wasn't working yet. For a young guy who had endured so much - four solid months in the hospital, several weeks of which were absolute hell - just to get to transplant, it made me want to scream out, "THIS ISN'T FAIR! WHY IS THIS HAPPENING TO HIM?!?" Honestly, it made me feel guilty for how relatively easy my path to remission has been. I just got so mad. Gratefully, over the past few weeks, things have gotten better for my friend, and there's still hope.

One of the things that sucks about knowing an increasing number of fellow cancer patients is that you know we're not all going to make it. That's just the reality of the statistics we face. So far, I've been one of the fortunate ones. But how many of my fellow patients whose stories I follow through blogs and Facebook posts and personal visits WON'T be among the fortunate ones? There's not a single one of us that's an awful person who deserves to die, so why will some of us have to? It makes me absolutely sick to think about it. I have always felt an assurance that I'd be OK in the end and that God has a few more things for me to do on this earth before I say goodbye. But one of the patients whose story I follow has always had a rather pessimistic view of things since their diagnosis. They don't seem to feel any peace about what they're going through or what outcome will come their way. Is that attitude reflective of a pervading sense that they will not be one of the fortunate ones, or is it that the pessimistic attitude may actually lead them to a poor outcome. I don't know. I do know, however, with whom I'd rather converse and spend my time, and it's not the chronically pessimistic. Cancer is hard enough without someone always moaning, groaning and complaining about it in your ear.

On a much more positive note, I got my Central Line removed from my chest last Tuesday. It was a pain to deal with when I showered, and with my chest hair growing in, the dressing around it always itched like poison ivy. So now it's out and I've got a big hole in my chest, like someone shot me with a .22. Well, actually I HAD a hole in my chest but now I've got a big scab. Soon I won't even need a band aid over it. And, a really fun thing about getting that darned thing out of me is that we can soon travel outside of the 45-minute radius from LDS Hospital, as my risk of infection drops significantly without a central line. The last week of February, we intend to go well outside that 45-minute radius as a family with a celebratory trip to Disneyland, one of the few things I love about Southern California (the other two are the beaches and that my sweetheart has roots there). Here's hoping all goes well and I can avoid any hospital stays or major setbacks that could derail plans for that trip. Positive thinking and steering clear of sick people should get us there. =0) Crossing my fingers...