I have had a ton of time to write an update but I have had very little motivation to do so. In a way there is so much to write about that I think you would be interested in but there is really nothing going on that is that interesting for me to write about. And in the end this will again be too long of an email.
Some of this email was written in the hospital and some after I got out. So this email may bounce around a bit and it will be rather long.
I guess I will start with just the facts. I will talk about how I'm feeling later.
I got into the hospital on the 4th. On the 5th they started the Etoposide and Cytarabine Chemo. The Cytarbine came in two parts, one around 10am and one at 6pm. The Etoposide came around 1pm or so.
On Friday Aug 5th Red Oelerich (runs Outdoor Utah Magazine), Kirstin Peterson (owner of Rim Tours) and Eric O (owner of Windgate Adventures) came to visit me They were all in town to attend the outdoor retailer show.
Sat Aug 6th: felt fine but started to feel the boredom of a hospital with nothing to do. Started playing and losing at scrabble online. I'm going to blame that on the chemo.
My dad and mom were around for the weekend. Mostly my errand boys/ food runner. Which was really nice. My dad left on the 8th.
The rest of the week blurs together. I started figuring out the day time tv schedule that worked for me. And Sorry Carissa I could not get into General Hospital. The first week was the chemo week. It was also the most boring. I did enjoy watching the USA/Mexico game with my mom on Weds Aug 10th. Other than that it was just really boring. I walked the halls a least once a day. But this was an exercise of extreme sadness and it was hot. The halls are full of sad people looking sad and barely pushing their poles around. It was amazingly depressing. I felt rather upbeat and this little masked stroll made me unhappy. The dr's keep pushing me to go to the hall more. I guess its good for blood clots and such. I just hated it.
I could not read very well. It hurt my head. Also video games did not feel very fun. And also hurt my head. I get the "what did you do?" question a lot And looking back. I can’t think of anything I did. Very little work, fair amount of tv. A couple of movies, some sleep. My bed did face the clock and I did watch it slowly click away. Yeah it was that boring.
The Chemo never really got me sick. Just felt a little off.
The last day of chemo which was Melaphine Aug 9th. I also started a steroid for a couple of days.
The "big" day was Thursday the 11th. They put my stem cells back in on this day around 11am. It worked kind of how I've explained. The lady came in with a garbage can/R2D2 looking box with my frozen stem cells in it. The temp in the box was -187 C. Yeah that's cold. They then set up a warm water bath for the stemcells. Something like fondue. Then they read my arm band, read the blood label, confirmed that they were my cells then thawed them out. Hooked them up, and in they go. There was a slight tickling sensation and bad taste in my mouth when they go in. I had been warned of this so I was prepared with a lemon to break the taste. The whole process took about a half hour. And they put in 2 bags of cells. Middle of the second bag everyone in the room but me noted that they could smell the cream corn. I never did notice the smell. My mom did for about 2 days. Trina commented that she thought it smelled "nice." I know its rather anti-climatic after all I wrote in previous emails.
My sister and brother replaced my mom on errand duty on Saturday aug 13th. We basically watch movies, argued and made fun of Dad. Which is just like our Thanksgiving routine. It was really great to have them around. This is where my week started to pick up. Things flew by from here, starting with lots of visitors all weekend. This trend continued almost to the day I left. It's amazing how nice it is to get different visitors when you’re in the hospital.
Things started to take a turn on Weds Aug 17th. My counts finally had bottomed out. Meaning my WBC had gone to zero along with other blood related items. This happens to everyone. Also needed my platelets to be transfused. This is similar to the stem cell replacement but without the smell and the bag looks like a bag of pee. This happened around midday.
I started to shake around 6 pm and could not stay warm. This is the exact same thing that happened when my line got infected the first time. I was really pissed and scared. The nurse came and let me know that this was not unusually since I had zero WBC. They called it a Neutrapinic(sp?) Fever. Since I have no immune system it is not uncommon to run a fever even though I might not have an infection. They ran blood cultures right away. I was better in about an hour. I actually never spiked a fever here. My Siblings left in the Evening after I was feeling much better.
The next day I was not feeling great. I had to be transfused with Red bloods for the first time around. Also started my Neupogen shots this day. The goal being to help my body produce WBC. I started to shake again around 5:30pm. This time I did run a 103 fever. This was the start of a on again off again fever that ran until Sunday morning. Zach came in around noon stay until Sunday. I was not very social during this time but it was great to have him run around. He even was able to beat a video game while visiting. Just like old times, except for the hospital room and me uncontrollably shaking.
I know this will sound weird but the fever was a nice change of pace. It didn't really d any damage (as far as I know). And I had an excuse not to walk the halls Plus it really felt like I slept/hallucinated though the whole thing. So when Sunday came around it was like I miss 4 days. (maybe next time they can put me in a Coma and I will come out right at the end.)
Somewhere in here I started to lose my hair. I had already lost all my body hair from my shoulders down. Zach shaved my head on Saturday and gave me a 15 minute Mohawk.
Sunday was a surprise day. My counts Shot up. From .1 to 1.7 mil. This was the most the nurse had ever seen. Even the doctor told me that if it was not for the previous fever he would have let me go Monday afternoon. That was great news! Also the Blood cultures hadn’t grown anything, meaning no infections.
The next couple days were hard because of the promise to let go earlier. If they had let me go on Monday it would have been the earliest they ever have. On what they call day +10. (10 days after thee stem cells are back in.) For the rest of my life I will be + something days to the BMT doctors. On Monday they told me if I did not get a fever I might be able to be out on tues. Tuesday came and they told I had to wait another day. This sent me into a rather foul mood. I think the real issue was they were unprepared to do all the paperwork because of the weekend and quick recovery.
On Weds aug 24th I was released around noon. I had already sent everything in the room down the night before with my dad. As soon as they said go I was out! I had to wear my mask to the hospital doors. I took it off when I got outside and sat on the grass and cried. I felt like I was being released from prison. I did not think it would be such a big deal but it was. I was more affected than I had imagined I would.
The hospital discharge was rather anticlimactic. They really did not go over anything. They said no grapes, sushi, uncooked meat, and avoid crowds. If you have to be around crowds wear the mask. Also wear the mask at the hospital. Other than that don't really need the mask for most things. If you get sick call right way. Here are your meds see you on Friday. Bam! Done!
The first thing I did was get something to eat with Jon Fuller and my dad at the Park Cafe. A Sweet BLT if you must know. I instantly felt better. I lost the dull headache that was in the back of my head for the past two weeks. Karla and dad took me to a nice dinner at Cafe Oasis which was another lovely meal. I felt great all day with no issues. It was really great to sleep in a real bed last night. I'm back in the basement of Dasch and Megs. It was also nice to hang out with the dogs even if they are not Lulu. I slept great last night.
Today I woke up sore. I think this is from the walking I did yesterday. Which is not that much but A LOT more than I have been doing. I also could be from walking up and down the stairs. I can also feel that I get short of breath easily. Other than that I feel really good.
Just being out of the hospital is healthier for you.
Thank you to all my great friends that stopped by. So Thank you, Red, Kirsten, Eric, Gretchen, Jon, Jen, Robyn, Amber, Silas, Sarah, Katie, Krysta, Ryanne, Zach, Meg, Dasch, JT, Rory, David, Tony, Trina, David, Thatcher, Kelley, Pierson, Colin, Kirsten, Elijah, Dave, Jenny, Dad, Obe, Emma and Mo. God I hope I did not miss anyone.
Special thanks for Karla, Janet, Erika, and Sally for sending me letters in the mail. A special thank to Sally who sent a wonderful care package with a variety of items. Crayons, gum, clapping monkey, monkey riding a horse, and yep a stuffed animal monkey. Not sure why all the monkey stuff but loved it anyway. Also received a postcard from Dasch and Annie, which was mailed from the bottom of the Grand Canyon.
I have started a list of things I HATE about the hospital. That will probably go out at the end. But here is a sneak preview.
- FOOD! You just can’t eat this crap. Plus they always screw up the order. It's cold, over cooked, dry, bland. Want me to go on?
- Hot water: the shower is just not hot enough. I know that sounds trivial but when I'm sick I just love a super hot shower. It's luke warm at best. It's really unsatisfying.
- Middle of the Night check ins: There is no unbroken sleep in the hospital. The nurses come in every couple of hours and check you vitals, and such. It gets really annoying towards the end.
There are also wonderful things about the hospital.
- Top is the nurses. Almost all of them are wonderful. Some are better than others but for the most part they were all amazing. Very upbeat, fun, and informative. They really know what’s going on and can anticipate problems before they come around.
- All the visitors. It was really great to meet with friends some I hadn’t talked to in 8+ years!
- You have a person that cleans your room for you. I always wanted that. And they make your bed. Ok I'm stretching here. There really is not that many things that are great about being in the hospital.
MY TIMELINE: So things are really unsettled. I have some complaints about the looseness of how I was released and I never saw my coordinator the entire time I was in the hospital. Shit Doctor Prystas came by to check on me and she is way busier. Anyway. Here is what I know.
Tomorrow I go in for a blood draw and an "are you eating drinking at home and not picking your nose" Q&A session.
On Tuesday the 30th I will go into have my lines removed. They are afraid of infection.
On Wednesday the 31st I meet with dr. Thompson the dr. that does the radiation. About the 2nd BMT. I'm not sure if I have mentioned this but the second BMT is a different regiment. It's 3 days of full body intense ration and 3 days of Chemo. So Weds will be a big day into me deciding if I will do the second BMT.
I Plan to going home from around sept2- 26th or so depending on a variety of things This is a bit earlier than the drs want but I really don't care at this point. If I get sick in-between then I will stay. If not I'm home.
I do have to come back up for a CT scan on the 12. The drs don't think it is appropriate to keep doing PET scans. All that radioactive sugar and such. This is going to be the scariest test I have ever taken. If the results are not completely clear of cancer I will not live more than 5 years. On good news I wouldn’t need to do a second BMT because it would be pointless. Needless to say I really really want this one to be clear.
Sept 26th would be day +46 and the start of second BMT if I choose to do it.
If you were looking for more emotion I guess I will put that at the end here.
I really am ecstatic to be out, a lot more than I really thought I was going to be. Its going to be really hard to go back in. I also feel very….lost. I guess would be the word.
I just want to be home.
I want my life to be back to "normal." This whole journey has been fun, interesting, tough and rather good for me in so many different was. But. Now. I am Over it.
I am really grateful for Dasch and Meg letting me stay here and it is a huge burden off my back. But All I can think about is going home. Starting work, getting a beer at the Brewery, working on my house, sleeping in my bed, playing card games with my friends, driving through the mountains, Driving out to Grand View Point, Moonlight hike to Delicate, floating the Daily, watching the sunset over the portal from my backyard ...blah blah to many things to keep going on.
I just want to be home.
That is why I planning on going home a little earlier. I'm really hoping that the 3weeks or so at home will help ease my thirst for being home enough to make the return trip not so bad.
There it is way long and way blah.
I will give a short update next week to let you know about going home, and details on the 2nd BMT.
Thank you all for your support. It was more important in the last couple weeks than it has ever been.
Thank you, Arlo