tag:blogger.com,1999:blog-5860453557394101912024-03-13T21:45:08.866-07:00 R You Fuckin Kidding Me?My story of dealing with Myelofibrosis. It's only a minor set back, so get ready for a major comeback.Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.comBlogger64125tag:blogger.com,1999:blog-586045355739410191.post-35234963910556512702018-09-25T15:41:00.001-07:002018-10-01T15:48:21.832-07:003 years out<a href="http://ryoufuckinkiddingme.blogspot.com/2015/09/chemo-day-one.html"><span style="--font-size: 15px !important; -moz-text-size-adjust: auto; -webkit-text-stroke-width: 0px; font-family: -apple-system; font-size: var(--font-size); font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; text-align: left; text-indent: 0px; text-shadow: none !important; text-transform: none; white-space: normal; word-spacing: 0px;">3 years ago<span class="Apple-converted-space"> </span></span>tomorrow</a><span style="--font-size: 15px !important; -moz-text-size-adjust: auto; -webkit-text-stroke-width: 0px; font-family: -apple-system; font-size: var(--font-size); font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; text-align: left; text-indent: 0px; text-shadow: none !important; text-transform: none; white-space: normal; word-spacing: 0px;"> I walked into the University of Washington Hospital and stayed for 29 days getting pumped full of chemo, stem cells, morphine, and various other drugs. </span><br />
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<a href="https://3.bp.blogspot.com/-Ty2xB0zjsLU/W6q40sOOY-I/AAAAAAAASTE/_l7MR1BAZTkUA44d-Gi8LR_o_7cOsHJ0ACEwYBhgL/s1600/IMG_4009.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://3.bp.blogspot.com/-Ty2xB0zjsLU/W6q40sOOY-I/AAAAAAAASTE/_l7MR1BAZTkUA44d-Gi8LR_o_7cOsHJ0ACEwYBhgL/s640/IMG_4009.jpg" width="480" /></a></div>
<span style="--font-size: 15px !important; -moz-text-size-adjust: auto; -webkit-text-stroke-width: 0px; font-family: -apple-system; font-size: var(--font-size); font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; text-align: left; text-indent: 0px; text-shadow: none !important; text-transform: none; white-space: normal; word-spacing: 0px;">In remembering that time that I try to forget, I went to UW<span class="Apple-converted-space"> </span></span><span style="--font-size: 15px !important; -moz-text-size-adjust: auto; -webkit-text-stroke-width: 0px; font-family: -apple-system; font-size: var(--font-size); font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; text-align: left; text-indent: 0px; text-shadow: none !important; text-transform: none; white-space: normal; word-spacing: 0px;">yesterday</span><span style="--font-size: 15px !important; -moz-text-size-adjust: auto; -webkit-text-stroke-width: 0px; font-family: -apple-system; font-size: var(--font-size); font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; text-align: left; text-indent: 0px; text-shadow: none !important; text-transform: none; white-space: normal; word-spacing: 0px;"><span class="Apple-converted-space"> </span>and delivered a dozen donuts to the nurses up there to say thanks and show them their success story. I got to see one of my favorite nurses Olivia, who was a 22 year old home body when she was caring for me. I told her to get out and party on the daily while in there. While I was there, she walked down the hall<span class="Apple-converted-space">,</span></span><span style="color: white; font-style: normal; font-weight: normal; letter-spacing: normal; text-align: left; text-indent: 0px; text-shadow: none; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="color: black;"> looked at me and said “JOHN MALKOSKI!” Then held her hand out and showed me the engagement ring on her finger. </span></span><br />
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<a href="https://3.bp.blogspot.com/-BV2WESEsSuM/W6q40sZBGRI/AAAAAAAASTI/I41rOtcM8-srfYTpHupXLhbi4feC1CtHQCEwYBhgL/s1600/IMG_4010.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://3.bp.blogspot.com/-BV2WESEsSuM/W6q40sZBGRI/AAAAAAAASTI/I41rOtcM8-srfYTpHupXLhbi4feC1CtHQCEwYBhgL/s640/IMG_4010.jpg" width="480" /></a></div>
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<span style="color: white; font-style: normal; font-weight: normal; letter-spacing: normal; text-align: left; text-indent: 0px; text-shadow: none; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="color: black;">It was pretty fucking awesome. </span></span></div>
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<a href="https://3.bp.blogspot.com/-uYmrKDxbW1s/W6q40scqNZI/AAAAAAAASTI/ZADORS_8Q7sFCeYXQV4FL9x6DPah67uzwCEwYBhgL/s1600/IMG_4011.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1203" height="640" src="https://3.bp.blogspot.com/-uYmrKDxbW1s/W6q40scqNZI/AAAAAAAASTI/ZADORS_8Q7sFCeYXQV4FL9x6DPah67uzwCEwYBhgL/s640/IMG_4011.jpg" width="480" /></a></div>
<span style="color: white; font-style: normal; font-weight: normal; letter-spacing: normal; text-align: left; text-indent: 0px; text-shadow: none; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="color: black;">After walking out the UW that day feeling as good as I did about the visit and where I was with life, I decided that I was going to celebrate each of the 6 days I was getting chemo with doing something rad. </span></span><br />
<span style="color: white; font-style: normal; font-weight: normal; letter-spacing: normal; text-align: left; text-indent: 0px; text-shadow: none; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="color: black;">Day 1, I went biking with Jim Bob and Stuart at St. Eds and we found some killer new trails. </span></span><br />
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<a href="https://4.bp.blogspot.com/-5JMp7TxP6V8/W7KWe4zOdII/AAAAAAAASTU/Kwg_opuwRRAVrlQRxd72qZCXMWvGeQNCACLcBGAs/s1600/IMG_4022.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://4.bp.blogspot.com/-5JMp7TxP6V8/W7KWe4zOdII/AAAAAAAASTU/Kwg_opuwRRAVrlQRxd72qZCXMWvGeQNCACLcBGAs/s640/IMG_4022.jpg" width="480" /></a></div>
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Day 2, I met up with a bunch of Dads at Chucks Hop Shop to pound some beers after work and tell stories of dropping our kids off at college. </div>
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Day 3, Todd, Tyler and I we went surfing on Lake Washington. The air temp was 56 and the water was 64. </div>
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<a href="https://3.bp.blogspot.com/-bc2qUHG3RIE/W7KYUy5PwMI/AAAAAAAASTg/TU1hv02c9tIAUc77Uy7ZNaj3q8cofY4PgCLcBGAs/s1600/IMG_4042.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="778" data-original-width="1600" height="310" src="https://3.bp.blogspot.com/-bc2qUHG3RIE/W7KYUy5PwMI/AAAAAAAASTg/TU1hv02c9tIAUc77Uy7ZNaj3q8cofY4PgCLcBGAs/s640/IMG_4042.JPG" width="640" /></a></div>
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Day 4, I left for lunch with Todd and somehow ended up spinning laps at Stevens Pass Bike Park. It was their closing weekend and the dirt was some of the best its been all year.</div>
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That night Lisa and I went to the Varsity O'Dea vs. Prep game. Prep got served up.</div>
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Day 5 was all time. Up early to drop Mac off for football practice, then off to Greenlake with Pat and Jen to walk the lake. We saw may characters that day, this city does not disappoint.<br />
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<a href="https://1.bp.blogspot.com/-nogc7WXUneE/W7Kg9zDi59I/AAAAAAAASUE/j786OXTlSVoGb8Xq0_YCe6Aix52qgo_MgCLcBGAs/s1600/IMG_4046.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://1.bp.blogspot.com/-nogc7WXUneE/W7Kg9zDi59I/AAAAAAAASUE/j786OXTlSVoGb8Xq0_YCe6Aix52qgo_MgCLcBGAs/s640/IMG_4046.jpg" width="480" /></a></div>
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Lisa likes to wear her tights inside out. </div>
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This dude just didn't give a fuck. I liked his style. </div>
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<a href="https://2.bp.blogspot.com/-7XA2MhTC214/W7Kg9qxp92I/AAAAAAAAST8/Nj4tOSTvrdAVhII6UAXhVb0JwUsncAscgCLcBGAs/s1600/IMG_E4044.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="502" data-original-width="376" height="640" src="https://2.bp.blogspot.com/-7XA2MhTC214/W7Kg9qxp92I/AAAAAAAAST8/Nj4tOSTvrdAVhII6UAXhVb0JwUsncAscgCLcBGAs/s640/IMG_E4044.jpg" width="478" /></a></div>
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Then that night it was off to Pennywise. Lots of whooo ohhhs went down. </div>
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And for my final day of chemo celebration, Toohey and I drove 478 miles round trip in a jaunt that took us 11 hours to complete just so we could get our 23rd consecutive month sliding on snow. </div>
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<a href="https://4.bp.blogspot.com/-CYjLHP8o8jw/W7KiO4mYktI/AAAAAAAASUo/JaflbUqt1AoLpbgbuZJbEeJj9jMtpaUOQCLcBGAs/s1600/IMG_4103.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1203" height="640" src="https://4.bp.blogspot.com/-CYjLHP8o8jw/W7KiO4mYktI/AAAAAAAASUo/JaflbUqt1AoLpbgbuZJbEeJj9jMtpaUOQCLcBGAs/s640/IMG_4103.jpg" width="480" /></a></div>
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And that's how I plan on remembering my 6 days of poisen from now on.<br />
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Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com1tag:blogger.com,1999:blog-586045355739410191.post-17223993983815961902018-08-03T15:38:00.001-07:002018-08-03T15:38:13.260-07:00Base2Space Top Fund Raisers<div style="text-align: center;">
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The C3 Incredible's team won two spots for top fund raisers during the Base 2 Space climb. Top individual dollars raised as well as top team dollars raised. With that, we randomly selected two of our team people for the challenge. Jenn Nelson from COAL was one of the winners, here's her story.
Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com2tag:blogger.com,1999:blog-586045355739410191.post-90715444999941990672017-10-02T15:38:00.000-07:002018-08-03T15:59:40.033-07:00Base 2 Space daySo the day before the Base2Space ride, I grab Cooper from the office and we head up to Stevens Pass to rip a few last laps at the bike park as it was closing weekend. The first two lap we did it was nice out, but chilly. The next two we got rained on, and then the last two we got snowed on. Yes, SNOW at the end of September. Needless to say I was chilled, wet, and dirty. I took a long ass shower at the cabin and back to Seattle we went. <br />
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October 1st I woke feeling kinda wonky. I don't really know how to describe it other than I was off, but fuck it, it was the big day at the Space Needle and we had the whole office along with some special outliers. Dan Brisse showed up to run the needle, Logic and Joe Neese were in, Joe Neese, Cheryl Meuller was there and she had just lost her husband Nick to brain cancer. Off we went, up the needle with all sorts of times. Mac ripped 832 stairs in 6 min 35 seconds and was the 24th fastest of 2,000 or so people up the needle. Brisse finished in the top 18. Me, shit....I snuck up there in a fat and furious 13 minutes plus. Up top the team celebrated OUR top fundraising victory as well as individual top spot too. <br />
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A week later I was at SCCA looking like this. The coldness of the biking combined with the over exertion of the climb on my weaker immune system cashed me in. Pneumonia was the diagnosis. I was out of the office for over a week, had allergic reactions to some of the meds and thought some nights before I put my head down on the pillow that I wasn't going to wake up. Even with the chemo and transplant, I don't think I had ever been that fucked up in my life. <br />
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Thanks Bro...That pretty much sums it up. Tried to do good, did good, then over did good and got served up. ThNX BRO!Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com1tag:blogger.com,1999:blog-586045355739410191.post-68483366679082092092017-09-14T11:15:00.004-07:002017-09-14T11:20:09.238-07:00Base 2 Space<br />
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On October 1, there's a group of us from C3 climbing 832 stairs at the Space Needle in the Base2Space event to raise money for Fred Hutch Cancer Research.
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Cancers a funny thing. It's not IF you've been affected by cancer, more about when you will be affected by cancer. And you can either pay it forward or pay it back. For me...I'm paying it back. Two years ago cancer never touched my world. I didn't have a connection or experience with it.</div>
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I put together the C3 Incredible's team for two reasons. First and foremost is raising money for a cause that saved my life while continuing to repay my debt. Second, to raise enough money that one of our team members gets to shit themselves walking around the outside of the Space Needle ring like I got to do last year.</div>
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My buddy John Logic did this race in my name 2 years ago and raised $5G, and got to walk around the Needle. So...with the group of people we have, I’m confident that we can put one of our peoples on the outside of the ring.</div>
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Donate for the sake of paying it forward and knowing that the shit show I went thru two years ago was 10X easier than someone in my same situation went thru two years before me. The Fred Hutch and the research they do is the reason. They money raised supports the quest to cure cancer, so donating supports all that they do.</div>
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Thank you
Johan</div>
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Ps. This isn't a competition for who donates the most bucks, $20 goes a long way if everyone kicks in.
Here's the <a href="https://www.classy.org/fundraise?fcid=1097053">donation link</a>.</div>
Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com0tag:blogger.com,1999:blog-586045355739410191.post-75067675343765592192017-06-23T09:57:00.000-07:002017-06-23T10:13:43.623-07:0020 months post transplant update, welcome to Steriods<div class="separator" style="clear: both; text-align: center;">
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I can tell you the days of blood tests, hospitals and worry are long gone from my life like they were a short 2 years ago when we were getting going with my transplant process. And I finally know what it means when we were reading up on transplants and life after, what they meant when saying "you'll be getting to know the NEW you."<br />
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Back in February I finally tapered off of <a href="https://en.wikipedia.org/wiki/Tacrolimus">Tacrolimus</a>, which is the immune-suppressant used to allow my new immune system to figure out how to work with my body and not kill me. I was highly immune suppressed at first, which made me very susceptible to the potential of sickness. I've had two colds so far and my new immune system has handled them like the champ it should be, seeing how it came out of a 20 year old. But since getting off Tacro, I noticed that I was having a hard time opening bottles, and my hands were always sore but never really thought much of it. Then Lisa asked me to do this online yoga stretching with her at home and I couldn't bend my wrists in order to do a push up, or any of the stretches for that matter. My calves and ankles were super tight and my hamstrings felt like they were always worked out and tenderized by a meat grinder. I told Doc about it and immediately the dream of being off Tacro was over.<br />
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Five weeks ago I had the feeling that eventually I'd get on some drugs for the symptoms going on so I started going to physical therapy / chiropractic rehab twice a week to physically work out my stiffness. They do deep massage, <a href="http://www.grastontechnique.com/home">graston techniques</a> and then rehab on the fascia to loosen things up and get you moving in a normal way. It's been a game changer for me but I knew that it wasn't enough. <br />
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Come to find out, the majority of transplant patients get <a href="https://my.clevelandclinic.org/health/articles/graft-vs-host-disease-an-overview-in-bone-marrow-transplant">Acute GVHD</a>. Meaning they have some sort of ailment that the new immune system creates in the body right after transplant, usually in the first 100 days post transplant. It can dry your eyes, toughen your skin, do a number on your mouth, and or attack a organ. I was one of the lucky ones that never got that. But what I did get was cronic GVHD. Unlike the cronic that Dr. Dre raps about, cronic GVHD goes after you when you think everything is sailing along just fine. <br />
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So before I went thru transplant I talked with TWO people who had both been thru transplants. That was about the extent on my research into Myelofibrosis besides what my doctors told me. I didn't want to read in a Google MD page that I was going to die in 3.5 years like they say everyone will. So with the two dudes I talked too, both told me that when (WHEN) I get on the steroid <a href="https://www.peoplespharmacy.com/2012/04/08/prednisone-side-effects-deal-with-the-devil/">Prednisone</a>, that I would be mental. One dude would get so emotional that he would cry over his bagel and cream cheese. The other said that he was just a fucking asshole. Unbearable to deal with from his wife's perspective. Neither of this sat well with me and to be honest its one of the things that I've been dreading since I heard about it.<br />
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Talking to my <a href="https://www.seattlecca.org/physicians/mary-e-flowers">GVHD doctor</a> about my concerns, we decided I'd be a good candidate for a <a href="https://www.seattlecca.org/clinical-trials/transplant-NCT02959944">clinical trial</a> where I use less Prednisone than would be typically given as well as be 1 of 186 people in the world involved in a test on a new drug for GVHD. Normal dosage for Acute GVHD with Prednisone is 2mg per kilo of weight, which would have me at 190 mg of Prednisone. For chronic GVHD it's 1mg, putting me at 95 mg, but with my concerns and the clinical trial I'm on 70mg along with the study drug. <br />
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So far, so good. I have nothing but great things to say for my improvement in a week on the roids. Swelling in my right ankle is close to gone, I don't ache when I get up in the morning like normal, it takes me a little longer to get to sleep but that's easy, and because I worked myself up into a frenzy about this shit before hand, I'm making sure I'm at the gym daily doing some sort of physical therapy exercises, stretching, lifting and cardio as well as still going to physical therapy. I also have post-it's placed in the car and on my computer reminding me I'm on drugs and to not be an asshole.<br />
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One of the two dudes I first talked to about going thru a transplant a couple of years ago is at the physical therapy place I go too. He's working out issues in his shoulder. I told him what I was going thru and he shrugged it off like it was nothing. "This is what we do now. Its no big deal. GVHD will come and go, and its our job to catch it, fix it and move on. " This was really refreshing to hear and reminds me of what I DID READ about life after transplant. That you'll spend the next two + years after transplant adjusting to the new you. And honestly, that's not really a change from life before transplant. I've always been adjusting to the new me with every injury, hang over, surgery or ailment. And chances are, so have you. <br />
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Again, if you found this page, I continue to write in it as a reminder to myself of this cancer trip because at 20 months post transplant there is so much we've gone thru that I tend to forget. It's kinda rad to read back at the progression of a getting better and how fast it is on paper vs. actually going thru it. I also write this as a resource for someone like me two years ago. An honest account and play by play of going thru something totally shitty and coming out the other side pretty fucking awesome and lucky. Lucky in the sense that we caught what I had early and we had the opportunity to treat it.<br />
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In the past two months we've lost two friends who battled cancer. One guy didn't catch his in time. He was waiting for his insurance to kick in before he got looked at for loosing close to 60 pounds and when he did get checked out, he had stage 4 pancreatic cancer. I got to reconnect with him 4 weeks to the day he died and have lunch. I was very sobering that he admitted that he was the reason he was going to die. That he didn't get checked out for fear of a hospital bill and what was potentially going to be told to him. Our other buddy died after a 5 year battle with a brain tumor. He went out like the champ he was. Fought it to the end, did everything the hospitals, his wife and kids asked of him and stayed humble, funny, and positive. One of the few beers I've had over the last 2 years was with him on the last day I saw him and I can still taste it. R.I.P. <a href="https://www.gofundme.com/grwc8fp8">Jason Locking</a> and <a href="https://www.gofundme.com/k3p3wres">Nick Larson</a>.<br />
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Its June and we're still hiking for the snow. The goal is 12 months on snow this year. Every month get at least one day on snow. June was month 8 for me. We had to hike a bit for it, but it was my fathers day present. <br />
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My boats still in the warehouse, but I've been getting on others and surfing is one of the best things for my GVHD. It does a full Physical Therapy workout in 10 minutes. <br />
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Cooking for the work crew using smoke. Probably really good thing for someone who had cancer. </div>
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Back to back Euro trips in April and May. Always fun with my partners and friends. </div>
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We've got two high schoolers now, freshman and seniors. </div>
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A care givers job is never done. Even though she's got less on her plate with my shit, she still deals with my stuff on a day to day basis. Like a champ. <br />
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Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com1tag:blogger.com,1999:blog-586045355739410191.post-40498401999618366002017-03-18T05:59:00.002-07:002017-03-20T09:11:36.927-07:00John Leslie<div style="text-align: center;">
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I met this dude last summer at Mt. Hood and thought he WAS the able bodied coach of the Canadian National Para-Olympic team. </div>
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Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com0tag:blogger.com,1999:blog-586045355739410191.post-15868493446437063402017-02-24T16:25:00.002-08:002017-02-24T16:25:23.877-08:00SlayRide<div class="separator" style="clear: both; text-align: center;">
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Do this event. ANYone can have a blast ripping two runs on skis or snowboards down the banked slalom course we're building at Stevens for the event on March 18th. <br />
<br />
Thru my life being saved by the Fred Hutch cancer research, Doctors at SCCA and the treatment at the UW, it felt only right to try and tie what we do with what they do. <a href="https://www.stevenspass.com/site/activities/events-calendar/events/get/event324,1484234442?_ct=1">Register info here</a>.Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com2tag:blogger.com,1999:blog-586045355739410191.post-54955263578165216382016-11-25T07:56:00.000-08:002017-02-01T11:11:29.483-08:00Thanks4Giving<br />
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Yesterday for Thanksgiving, Milo and I (Mac was sick, Lisa was cooking)
grabbed the split boards and headed up to Stevens Pass for our
inaugural rip up the mountain. Now we've been splitting for the last 6
years but only a couple of times a year. We split board, but we're not
split boarders. Usually we do it like we did yesterday, pre-season or
when the season ends and there's' still a shitload of snow on the hill.
We're what you'd call season extenders in the split board world.
Definitely not the Deeper, Further, and Even Further type of dudes. We
prefer chairlifts, cats, choppers and car shuttles to self powered
masochism.<br />
<br />
So off we go, trudging thru pow, walking up a fucking hill with not
enough snow to open the lifts. Too many clothes on, sweating our balls
off, thirsty, panting, trying to find a rhythm and a track that's
already put in while tricking myself into thinking this is actually
fun. It was fun though, cause Milo and I were totally engaged talking
about school, sports, chicks, college, shredding, and this is what kept
my legs rolling. We saw people along the way, dudes in proper set ups
blowing by us, but we kept at it.<br />
<br />
As Milo pulled away from me, I had time to think to myself and think I
did. The East Coast complaining went away and the West Coast
everything's awesome came into play and I started to think how rad it
was that I was climbing Stevens Pass with my son today. I got to
reflect on how thankful I was for this misery that I'm lucky to be apart
of.<br />
<br />
Last year at this time my Doctors told me that if I even came to the
cabin that I could die. Straight up. "If you get any sort of virus,
cold or cut, your immune system is so fragile that the distance you are
from this hospital (61 miles) your body will go septic and by the time
you come in here, it will be too late." That's the shit our doctors
told us.<br />
<br />
My cadence kicked in and I was motivated not just to get to the top for
the ride down, but pushed by all the people that I'm thankful for. I've
said it before and I'll keep saying it, that it takes a village to
raise an idiot with cancer, and I'm living proof of it.<br />
<br />
So with this post, I want to give thanks, thanks to the people that gave me the opportunity to be writing this post today:<br />
<br />
First and foremost my Family - Lisa, Milo, Mac, Rocky, Clay and Leslie Macomber.<br />
<br />
Seattle Caner Care / University of Washington - Dr. Becker, Sonny, Dr.
Dan Egan, PA Peter Johnston, PA Kevin, Justin Shepard, Megan, Pilar,
Sue, Lindsey, Molly, Erica, Lisa, Debra, Debby, Oliva, Emily, Nate,
Natalie, Andrea, Jenn, Larissa, Mercedes, Toni, Cindy, Natalie, &
Dr. Storb.<br />
<br />
Hospital and Home Visitors: Greg and Julie, Pk, Gumby, Kasey and TJ
Gundram, Bob, Ann and Dom Kelly, Gorio Bustamante, Roland Morgan, John,
Frank & Aurora Logic, Ballard Pat & Laura McQueen, Riley
Goodwin, Thomas Nash, Sam & Jack Coleman, Jess Placek, Kyle
Kennedy, Dan Stanalonis, Kris Sweez, Adam Gerkin, Ry-Ry McLaughlin,
Steve Kerr, Frank Martin, Steph V, Matt Sirotzki, Bob and Sue Tontini,
Cheryl and Nick Larson, Eddie Spaghetti, Jack Donovan, Beatrice, Lil
Stevie and Emily Macomber.<br />
<br />
Meal Providers: Michelle & Chuck Cole, Sam & Katy Coleman,
Michelle and Stephanie Worely Fannel, Cynthia Coleman, Josh and Krista
Burch, Jim Bob Hume, Pat and Jen Reinholt, Brian Bybee, Tristi and Matt
Sirtozki, Greg and Julie Tontini, Lisa Glover, Cindy Wolfe, Sue and
Dennis Nicholson, Scott and Cheryl Bracken, Martin and Alie Wolfson,
Johanna, Sarah and Adam Bradley, Lynette, Blaine and Julie, Natasha
Soultrain, Bruce & Kirsten Bannister, Cindy Lykins, Cheryl Ann,
April & Kimo Cole, Cheryl Larson and Jean MacBarron.<br />
<br />
People that kept Milo and Mac cancer free: Kim, Jason, Wyatt and Owen
Cline, The Kellys, Carman Klothe, Skyer Klothe, Riley Goodwin, Mark
Dangler, Myles Soderstrom, Matt Wainhouse, The Soultrains, Josh Dirkson,
Ari Strickland, Brian Schaeffer, Suzanne Bridges, Stevens Pass, Kelly
Carter and Chris Danforth.<br />
<br />
Skype / FaceTime / Phone and Texters: Mike Rosen, Bruce & Cynthia,
Mom and Dad, Emmet, Graves, Lizzy G, Griff, Evan Walker, Sweaty,
Wilmoth, Krauth, Ed Munroe, Sparky, Dan Sullivan, Rob McCutchan, Kevin
Addy, Matt Patti, Sarah Hudkins, Rahlves, Tony and Gab, Fletcher,
Natalie Murphy, Chirs Dixson, Sister Giovanni, Jay Good, Jeff Baughn,
Martino Fumagalli, Hor Hey Kleckner and Manny, Andy Hetzel, Benny
Pelligrino, Inventor of Snowboarding, Doug Macomber, Becky and Steve
Macomber, George Johnston, Justin Afflenux, Maxx Von Marbod, Dustin
Craven, Brandon Cocard, Jj Catlett, Scott Stevens, Dan Brisse, Jess
Kimura, Phil Jacques, Martino-Claudia-Julietta Fumagalli, Adolph
Koleman, Griff, Tay Tay, Steve and Debby, YourMom206 and many many
more.<br />
<br />
Yes I know I've left some people out, there's a thing called Chemo
Brain, and I certainly have a little of that normally, but then add all
that dope and I get dopier. I'm sorry as I'm thankful for everyone
that helped along the way.<br />
<br />
To all of you that came, cooked, cleaned and called, thanks, thanks for giving me THIS Thanksgiving.<br />
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Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com0tag:blogger.com,1999:blog-586045355739410191.post-65793938591384977682016-11-07T07:56:00.001-08:002016-11-23T15:33:17.772-08:00One year ago...It's been 13 months since my transplant and a quick year later, life if back to normal. Even though I was working full time since January, I wasn't traveling. For the last 8 weeks, I've traveled to 6 of the 8 territory's I cover, been in 69 shops and met with 82 different buyers. On Friday I leave for Madrid Spain where our annual winter sales meeting is happening. Things have gotten so back to normal that last week I was bitching at home about traveling here, having to put together this presentation, while missing out on this...and my wife says to me "honey, what were you doing last year at this time?" Which puts everything in perspective because on November 7th last year, I was infusing myself with 9 hours of meds, taking two shots of day of blood clot medicine, doing anywhere from 3-9 hours a day at the SCCA, getting multiple transfusions a week, and taking enough pills for my neighborhood. So yea, not much to bitch about these days.<br />
When I got released from my Transplant Care, which had me for a 100 days after transplant, life started to happen again. Not to brag, but for anyone that doesn't know me and is reading this vs. the death sentences you end up reading when you Google your disease (which I did) THIS is what I've had the opportunity to do since being released from Transplant while still regularly getting blood work, doing follow up appointment and all the other maintenance regimens that are required to keep your ass alive. Time is what you make it. So make it great.<br />
Enjoy the photo montage from January until now in no particular order.<br />
<br />
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I got to meet and surf with this dude, Mike Koss. Mike was part of the development team for a program I use every day, Excel. Dudes got a hell of a wakesurf boat, house and love for life. Coincidentally he's on the Fred Hutch donations board making sure cancer research is fully funded.<br />
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I surfed a shitload this summer, with a hat and lathered up with sunscreen. </div>
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"You can't do yard work" is what the doctors told me. Ok, well now that I have a charcoal filtered respirator can I? "Yes."<br />
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I made our annual trip to Baldface. If you don't know, find out. Its that good, and was a milestone goal for me to do. These guys were so accommodating of me and where I was at with my recovery. The snow was so good that I said to the owner "I'd go thru another year of cancer to ride snow this good again."</div>
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I went into the hospital at 190lbs, got down to 148 and looked like this for a long time, as I was stuck in the 170 lbs of pure pussy range. Not to mention my skin was dusty dry. I was pretty ashy for a while.</div>
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Got to go to my sons high school swim and dive meets as soon as Transplant said it was cool, which was a treat. <br />
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This is how we made doing the big trade show work. With technology. I stayed in Seattle, my boss got a manikin and attached a I-Pad, and I Skyped in daily and talked to all our customers, friends and reps. <br />
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It was a hit.</div>
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I went 6 months and 2 days with out a drop of booze, and when my sober buddy didn't give me my 6 month chip, I decided to enjoy a mellow one after work. <br />
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Traveled to my first demo in February.</div>
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Birthday dinners for Tonto and Lisa in February.</div>
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30th Annual Mt. Baker Banked Slalom in February with Jake and Graves. </div>
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Which Milo won for the second time in his life. </div>
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Got on my first flight and went to MA, for my parents 50th anniversary. Snuck down to see my sisters in laws and nephew for a grilled cheese with tomato.<br />
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College room mates Sparky and Stick came out to Stevens to stay with us. </div>
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We went to Big Bear for a snowboard magazine 4 day photo shoot with the kids.</div>
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Griff came out like he always does, and got to spend time with my favorite French soccer shred mom.<br />
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Journeyed to Italy to work on 2017/18 Union bindings with these dudes in April. </div>
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Got to snowboard at Madessimo as well. </div>
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Watched my good buddy walk around the Space Needle for raising the most $ in a Fred Hutch cancer climb.<br />
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Shredded 60 or so days with the kids this season.</div>
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Milo and Mac continued to do contests and stand on the podiums.</div>
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Went back to Europe, this time to Austria in May to see the Mothership, our new state of the art, fully hydro powered snowboard factory.</div>
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And did it with my partners. The dudes that made our financial world a breeze to deal with during my absence. Thank you.<br />
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This is our ownership group for all the brands and companies. Most of the guys here, we've been working together close to 20 years now.<br />
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We shredded at Molitar Glacier too. </div>
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Watched Milo make 12' at the pole vault.</div>
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Had a beer with the neighbors.</div>
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Went to Hood and rode multiple times, this ones over Labor Day weekend with the family that kept our kids cancer free during my incarceration, Jason Cline. Everyone should have a Cline in their lives.<br />
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COPA America game time.</div>
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Sailing in the Cancer Cup</div>
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Second COPA game, USA vs. Argentina.</div>
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Back on the horse that bucked me into the hospital many times.</div>
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Went to the unveiling of the Lambo Lab with Lisa. Everyone was dressed in black...cept us.<br />
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Made it to Whistler in July to Camp Of Champions. Hadn't been there since 09.</div>
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Made it over to Whidbey Island (never been there) to watch Ballard Pat and Laura get married. Pat would just show up at the hospital multiple times during my stay.<br />
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We bought a new office and warehouse building that was completely overhauled. Here the warehouse is getting set up. <br />
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Did a summer meeting at my buddies lake house with all the reps. </div>
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Mac got up early for dawn patrol surf sessions. </div>
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Climbed the Space Needle with the family.</div>
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Then got to roll around on the outer ring that's 3' wide in what felt like pretty high winds. </div>
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Actually enjoyed sunsets.</div>
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Chopped, stacked and split wood at the cabin.</div>
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Full warehouse of shred gear. </div>
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Outside of the building.</div>
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Dinner with the neighbors at Drunky's BBQ.</div>
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9/11 doing the same thing with Mac that I was doing on the originally 9/11.</div>
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Traveled with reps to hang with retailers.</div>
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Flew in and flew a 1966 Huey 3 in and around Chicago.</div>
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Got my 5th bone marrow aspirate during my year check up. </div>
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As well as a shit load of blood taken out.</div>
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And now weight 195 naked, this with clothes on. </div>
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Life's pretty good these days, and I have the SCCA, UW, all the nurses, doctors and staff to thank as well as my friends, family and wife. It takes a village to raise an idiot, and I'm living proof. If you have cancer and found this page to get an understanding of what you go thru, killer, that's why I wrote it. Remember it's your trip, make your time shine. <br />
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Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com0tag:blogger.com,1999:blog-586045355739410191.post-9046215224604137292016-08-19T16:29:00.000-07:002016-08-20T15:45:13.091-07:00Base2Space<div style="text-align: center;">
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11 months post transplant, I'm really beginning to realize that Cancer isn't a curse. It's been a total reset to me and because of it, I've had the opportunity to meet, cherish and do things I would never have or could have done before. I'll just share a thank you letter I wrote yesterday to David Mandapat who runs the Space Needle and Mark Grantor who works for Fred Hutch. </div>
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David and Mark, </div>
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I can’t thank you two enough for today. Wow. I’ve had some incredible opportunities in my life and today ranks right up there. </div>
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The first photo is Haines Alaska on a run called Frosted Flutes. It was on April 27th, 2007. I’m 3/4 of the way down right above the Bergstrom. This day, this run, is single handedly the best day ever I’ve had snowboarding and I’ve been standing sideways for 32 years now.</div>
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Anyway…</div>
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This combined with climbing all them God damn stairs produced a similar feeling of elatedness that the above shot did.</div>
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For the snowboard run to happen, I only had to put in 75 days or so on the snow that season, swim 3 times a week, and be in the gym the other 3. Then pay a couple of grand in travel and heli fee’s. And then for the second photo, I didn’t have to do anything, but let nature take it’s course and then find Fred Hutch, the SCCA and meet you two. And have insurance dish out close to a million to keep my ass alive.</div>
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Both challenging in their own ways, and honestly, the reward afterword is very similar. </div>
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Funny that last year at the same time I was walking around the Space Needle, I was getting 31 staples pulled out of my stomach because they had to yank my 12 pound spleen. And by the way, that doesn’t rank up there with “incredible opportunities.”</div>
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Very grateful, thank you.</div>
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Johan</div>
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Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com0tag:blogger.com,1999:blog-586045355739410191.post-92102163603381113322016-08-02T14:01:00.000-07:002016-08-09T16:25:08.344-07:0010 months post transplant<div class="separator" style="clear: both; text-align: center;">
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Ten months ago today I had already undergone 6 days of death serum and my body was prepared for the life that was being flown over from Germany. 10 months ago is a drop in the bucket, but that day, those weeks and months following seem like an eternity ago.<br />
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Before going into this thing, I kept reading the new you after transplant, it takes time to adjust, you wont be able to do what you once did, bla bla bla. And when your about to go thru the biggest thing in your life, reading shit like this isn't encouraging.<br />
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Last week I got a pamphlet from Seattle Cancer Care saying "your
coming up on your year anniversary." There were articles in it
suggesting that you talk to your employer about coming back to work and
about starting an exercise routine but taking it slowly. <br />
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There's really nothing I can't do now, besides get hammered, eat raw sushi, have a sun burn and smoke weed. My life is pretty normal, except for the daily drugs I'm still on, and the monthly doctors visits. Everything the pamphlet says I can start to introduce into my life, I began almost 7 months ago, very carefully.<br />
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So if your reading this because you found me on the internet searching out stem cell transplant, bone marrow transplant, or myleofibrosis, I'll offer you this...don't believe everything you hear or read. I think they paint a picture that is pretty grim just to prepare you for the doom and gloom. Believe in your doctors, treatment and yourself, be a participant in your recovery and you'll be better off than they make it out to be.<br />
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On the 18th of this month, I'm going to walk around the outer ring of the Space Needle for a cancer awareness thing. John Logic did it a couple of month ago because he won the opportunity by being one of the dudes raising a ton of money for cancer thru Fred Hutch on a stair climb. I went there to watch him and met the head dude of the Space Needle and he asked me back to scare the shit out of myself.<br />
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It's gonna be fun. Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com0tag:blogger.com,1999:blog-586045355739410191.post-77233144799433865482016-06-01T14:16:00.000-07:002016-08-02T14:28:53.496-07:00YoBeat Hump DayBefore the kids and I went to Big Bear CA for a snowboard event, a young man that we had met a couple of years before asked me if he could do an interview with me for his <a href="http://savedbythegnar.com/">blog</a> while in California. I've read his blog before, have it book marked and thought why not. <br />
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There's a pretty funny snowboard site that "makes fun of snowboarding" on the regular but on Wednesdays profiles riders, industry dudes, etc. Well Justin sent the interview he did with me to these guys to use for their <b><a href="http://yobeat.com/2016/04/20/hump-day-with-johan-malkoski-the-worlds-worst-dad/">Hump Day feature</a></b>. Give it a read if you like, my answers to the questions aren't really anything special, but more of the response and positivity from the comments. My goal in doing it was only to raise some awareness for Be The Match as well as for friends of people going thru something like I did. <br />
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Enjoy.<br />
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<br />Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com0tag:blogger.com,1999:blog-586045355739410191.post-85921065719233676422016-04-29T12:38:00.002-07:002016-05-18T14:23:53.071-07:007+ months post transplant<div style="text-align: center;">
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7 months ago my journey began. I was pretty dead set about not calling this thing a journey, having people call me brave or a warrior. And I still believe that. Cancer is a curse. It physically and mentally changes you, as well as it changes how people look and act around you. <br />
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Nurses and Dr.s told my wife and I that this would be the toughest thing we ever did in our lives and it was. The duration of the on going suck challenged both of us on a daily level and still challenges us even though I'm fully back to my old ways of living in denial that anything was wrong with me. These days I'm living my life like I'm not still getting weekly blood work, bi monthly Dr.s appointments, taking 25 pills a day, ingesting a steroid oil four times a day, staying off booze, being careful who I'm around and what I eat, washing my hands 10x a day and actually tapping out when my body says enough's enough bud. Was this the most painful thing I ever went thru? Hell no. But there was plenty of long lasting uncomfortable moments thru it. I'm almost thankful for all the times I wrecked myself on a bike and snowboard and had to get surgery, as it was great training to get used to being in pain and taking copious amounts of drugs.<br />
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These are my work peoples, in Austria with out me but having a beer for me. </div>
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I learned that what they tell you about YOUR cancer is in the general sense. When this began I was told that I would need to be out of work for a year. I was back at work full time, with my Dr.s blessing in 4 months. They said I'd be good to get back on the mountain in late March or April. I started snowboarding 14 weeks after being admitted into UW and getting chemo and 6 weeks later raced in the longest running snowboard events that my older son won for the second time. Two weeks after that I was lucky enough to drive to the interior of Canada with a fantastic group of friends and get in a helicopter to be delivered to a mountain top lodge so I could enjoy 4 days of riding the deepest snow. A week later I got on my first airplane and surprised visited my folks for their 50th wedding anniversary. The next two weekends my best buds from all chapters of my life came out to visit, grade school, college and Steamboat. From there I got to tag along with my two boys to Big Bear California and watch them step up to the plate and knock the ball out of the park when the terrain and weather were throwing sliders and fastballs at them. From there I got back on an airplane and flew to Lake Como Italy to work on future product for our binding brand as well as get a day on the hill at Madesimo. We rode from Italy to Switzerland and back. As I type this, I'm in the middle of finishing my presentation for our annual partner meeting that's happening next week. Back in the air I go to Venice Italy, where I'll meet up with my long time friend and partner George, and we'll drive north to Austria to the Mothership. The name of our brand new, state of the art, completely hydro powered snowboard production facility. If that wasn't enough, after 12 years of being on the waterfront with a view of every boat that comes and goes from Lake Washington and Lake Union, we are moving. We bought a building just 8 minutes from my house and 2.7 miles away.<br />
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One of the best parts of the recovery goal, getting here again and getting some! </div>
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I guess the moral of the story is, the picture of my future was painted pretty black and white just a short year ago. If you would of told me then where and what I would be doing now, this whole shit show would of been way easier to do. Its like watching a scary movie, if you know the ending and what happens along the way then your not jumping out of your seat crying like a little pussy every time the bad guy jumps out of a closet. But cancers not like that and everyone's journey doesn't always have the outcome that I've been blessed with so far. I'm still on immune suppressants and working thru some GVHD in the liver. A mere sun burn can turn my life into a tailspin but for now, I'm enjoying the ride in hi-def!<br />
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Couldn't of done it with out her</div>
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Thanks for all that helped me thru this. Meals, visits, car rides, shred dates, hospital visits, cards, emails, Skype, Facetime, texts and good thoughts all made this possible as well as having a partner that did whatever it took to make it happen. So if you know someone with something and man oh man is it ever more apparent to me know that I'm going thru it, reach out and do something. Anything too. Whatever you do, don't say "whatever you need, just let me know." Just do something.<br />
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Below is a mere sampling of photos taken of the people that made all of this possible. </div>
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Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com1tag:blogger.com,1999:blog-586045355739410191.post-31540958691722348712016-02-01T17:39:00.000-08:002016-02-01T17:39:22.049-08:00120 days post transplantThere are days we wake up and Lisa looks over and says to me "can you believe we went thru that crap?" And I shake my head and go "yea right?" Especially cause I'm feeling pretty back to normal these days. Besides the fact that I still have to go to SCCA once a week for blood work and Dr.s meeting, take some 30 odd pills a day, shed skin cells like someone with their first sun burn, itch constantly, look like a refuge from Ethiopia, have to eat 3,000+ calories a day when I remember too, stay away from groups of people because people are filthy, walk around with legs and cankles filled with fluid and am still for the most part a hairless 12 year old when naked. Other than that...I'm feeling great! I'm back snowboarding, following the kids around the hill and getting my mind blown on how good they and their friends have gotten. I've gotten almost a dozen days on hill since I self prescribed myself the chairlift 3 weekends ago and actually gotten to ride powder 3 times now. This is my fifth week at work full time, and that too is pretty damn satisfying. Last week was our yearly big tradeshow and we decided that flying and being around that many people was a risk too big and the reward wasn't that much so my boss Gumby figured out another way for me to be present and participate. I spent 18 hours on Facetime Thursday and Friday talking to customers and industry folks thru an I-Pad mounted on a mannequin. It was a trade show hit from what I was told, and more importantly sent the message that even though you may be down, you're not out. <br />
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Macs been riding like a little man these days. Super fun to see him step his game up.</div>
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Saturday 11" waited for us and Milo and I got back to sneaking into our favorite runs.</div>
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This was how I looked at the tradeshow. Max Headroom. </div>
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I told my buddy Ben that I would be at the trade show and to come by and see me. He did, then called me a Motherf*cker.<br />
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It was good to talk to my old boss Keith Leifer. Dude has hit me up every year on my birthday since I stopped working for him in 1996.<br />
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Mellow conversation going on.</div>
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On Saturday we answered some Facetime calls from the convention center on the chairlift. </div>
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People were kinda pumped for me, but then after I told them we were floating on 11", I got the finger.<br />
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Mac, Owen and Wyatt straight up winning.</div>
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<br />Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com2tag:blogger.com,1999:blog-586045355739410191.post-31118952932588248552016-01-11T15:37:00.002-08:002016-01-12T12:57:10.689-08:00BOOYA!Day 100 is today! We made it out of the Transplant Team alive.<br />
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Last week was pretty all time if I do say myself. Monday was normal blood work and Wednesday we had our exit meeting with Dr. Storb. Doc rolls into the meeting room and looks at us saying "how you doing?" KILLER! Can't wait for all these rave reviews during this exit meeting Doc! To which he was very stoic, like he had some not so good news for us. But after rolling thru my results in which I passed everything with flying colors, including my lung capacity being larger than when I started ("Wow, never really seen that result before!) he said that I'll be tapering off most of my drugs over the next couple of months on most, and on some up to a year. The only drug I'll be on for life is penicillin because of the lack of a spleen. He then warned me to be religious with my use of SPF 30 anytime I'm in the sun as a sun burn can kick in GVHD anytime down the road. He seemed ok with me going to the cabin, as the Long Term Follow Up people said it was cool, but suggested I not "bored" until a month or so down the road. <br />
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Friday was the final step to being released where I had my Hickman Line literally yanked out of my chest. Man did that feel good. Seeing how that line goes in me a good 6 inches or so and is held in place by a little o-ring that bonds with my skin. And now that o-ring is stuck in me and makes a squeak when pressed like a dog toy. Just another foreign object in me at this point. Screws, immune system, o-rings and chicken bones, but that's another story. Shit happened in college, so it doesn't really count.<br />
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Now I only have my weekly check in's / blood work with Dr. Becker, my original oncologist. It's time to put some weight on this frail body of mine, join the gym, get back to the cabin and on the hill when the Doc says it's ok. Hopefully the hair comes back too. Arm pit, beard, chest and nutz are all a little cold these days. I feel like one of them <a href="https://featuredcreature.com/wp-content/uploads/2012/10/beauty_exotica22.jpg">hairless cats</a>.<br />
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Too late, I'm back! It felt incredible to ride the lift and follow the boys down the hill too. First couple of runs were with Milo and Kimo, Keala's dad. Then we hooked up with the Cline clan, to which Owen was the only one of all kids running a "I slash with Nosedradamous" sticker. I asked Milo why he didn't have one? "Why?" was his response. Then Wyatt the other Cline kid see's me and throws out a sincere "It's good to see you back on the hill Johan." I don't know if those kids were coached into that, but it sure felt good. Kimo's wife and other son Levi showed up and my last two runs were following a train of kids destroying every feature in the park. It was awesome.<br />
After 6 runs I figured I better go check in with Lisa so she wouldn't worry. She wasn't all for me going up on the hill yet, but supported my lack of better judgement in doing so. After a little rest and lunch, Milo grabs me and says "lets get back at it." As I stand up to follow him out, the long arm of the Lisa put a screeching halt to that notion and it was time to pull the cards out and play a couple of games of Gin Rummy. </div>
Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com2tag:blogger.com,1999:blog-586045355739410191.post-12206930284844350442016-01-03T19:30:00.001-08:002016-01-03T19:44:20.745-08:00Walking thru the tunnel<div style="text-align: center;">
Last week I saw the light at the end of the tunnel and now I'm walking thru it. </div>
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Monday met with the "team" and discussed me leaving them by the end of this up coming week. We had to get my magnesium levels up so I could get off of the home infusions I've been doing since leaving the hospital. Lisa and I brought up the confusion we were having with not being more than 30 minutes from the hospital, that was keeping me from the hill and cabin. Doctor Storb said that he understood and then proceeded to talk around when I could get the hell out of Seattle and go to our happy place. But it seemed like he was hinting that the middle of January would be a good time to venture up there safely. I also asked when I could get back on the booze wagon. Not boozing boozing, but the ole have a beer or three with friends during social gatherings and it looks like I'm riding the sober train until the end of March on this one. <br />
During the rest of the week I went appointment to appointment so they could run me thru almost all of the tests that I did during the 3 week prep leading up to me entering the hospital on September 25th to make sure I could live thru the transplant.<br />
We did a bone density test, to see how jacked the drugs made my bones. Did I get osteoporosis from the meds? Nope, clear for take off there.<br />
There was a pulmonary test, which my intake was 10% better than before I took this "journey." The tech said that it was because I was as light as I am and my chest could expand more than when I weighed more. Another good result.<br />
The dentist was up next and the first question they asked me was how often I flossed my teeth. Twice! "Twice a day, that's great!" No, twice a year. I get two teeth cleanings a year and each time the hygienist flosses my teeth. It's against my religion to floss Doc. <br />
My results came back from the bone marrow aspirate. I've taken over the Germans blood type of O- and lost my blood type of B+, but still retain my platelet type of B. Apparently they don't kill all of you during the chemo stage and your platelet type is genetically part of you forever. Also they said that there is no sign of cancer in my marrow. Seeing how the type of cancer I had is curable, that's a good sign.<br />
I had a ultrasound on my stomach to see whats up with the small blood clot I got after getting my spleen out. I've had to get two shots a day since July because of this and honestly, it sucks. Bad. I hate these shots more than anything I've gone thru besides the spleen coming out. They burn, sting and I'm a giant pussy about needles. The results showed no clot present and boom, no more shots for me. <br />
The best appointment I had was a Long Term Follow Up (LTFU) departure class about what we can and should do once we leave the transplant team and go back to where ever the hell we're from and get in the care of our normal cancer docs. Lisa and I stayed after class to ask specific questions about me and what I can and shouldn't do. THIS was the home run meeting we've been waiting for:<br />
Yes, I can go to the cabin once released from the transplant team. My immune system is still delicate and growing but I will show signs of an infection or sickness before going septic and the Monroe hospital being 45 minutes away is close enough for me to stay alive. Just tell them I'm a transplant patient and call the SCCA and they'll tell them the drugs to administer to me to keep me going should something go down.<br />
My platelet count is high enough that I can snowboard with out bruising. Whether my energy and fitness level will allow it is another story. But I'm betting that this skinny fuck could muster out a couple of runs.<br />
The gym is a go. Bring some clean wipes, wipe down everything I touch and go when no ones there.<br />
Air travel? You betcha. Not for vacation but if I have to go from point A to B, I can. Bring those clean wipes again, my own drink and food and let it rip. I should wear a face mask too, not for protection but to keep people away from me.<br />
Sporting goods event are a go as well. As long as we're rooting for a shitty, loosing team and no ones in the stadium.<br />
This week I have my good bye meeting with the yellow transplant team and then Friday I get the Hickman line removed that goes directly into me. This is the final straw in me walking thru the tunnel into the the light and getting a well needed tan. Not the chemo tan I'm sporting now.<br />
Bring on next week!<br />
<br />
I walked around the waterfront by SCCA in between appointments last week and figured that this would be a pretty good boat to move into with Lisa, once the kids were out of the house that we're gonna sell as soon as their gone. But upon further internet investigation, the 2.3million price tag is probably gonna keep us land locked. <br />
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Gnar and Milo took off from Seattle all week since they were on vacation and we couldn't be at the cabin. Dr.s orders. The Clines took over the parenting duties for the week, while Gnar took over the "we wish you were here Dad" text and photo's.<br />
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The older dudes at Stevens took Milo under their wing and brought him out in the side county to build jumps and jump off cliffs. This one's kinda large seeing how he's landing out of the frame.<br />
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Classic Tontini's. </div>
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My first sober New Years in 29 years with these dudes. One of the more memorable ones in a long time.<br />
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Our French friends the Soultrains have been great with the boys, jumping in and getting them to and from the mountain like the Clines have. Natache sent us this shot of the boys coming back from an event in Wenatchee. It must be a French thing that Milo's doing, as we've never taught him that.<br />
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It must be the BMX in me, cause I jumped the gate yesterday and went up to the cabin to clean up from the week that the Clines and the boys spent there. Good thing we drove all the way up and back so we could walk into a spotless cabin. Thanks again for being great humans Jason and Kim, as well as taking great care of our land yacht.<br />
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<br />Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com1tag:blogger.com,1999:blog-586045355739410191.post-61302108915637623582015-12-27T01:23:00.000-08:002018-05-29T12:58:55.652-07:00Weak Neun!<div class="separator" style="clear: both; text-align: center;">
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That's German for NINE! Another one in the books and things pretty much keep getting better. Cept for the fact that it's snowing buckets up at the hill and I'm actually paying attention to what Gail my PA said on Monday, which is staying close to the hospital. But of course I am gonna ask Dr. Storb what his take on this whole situation is, because common sense would tell ME that being stuck in Seattle until March doesn't make sense.<br />
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"Hey Dad it's sick out here, I wish you could come with us so we had someone to film."</div>
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The way I figure it is, transplant patients from out of town need to stay close to the SCCA for a 100 days because of risk of infection. Then after that, they usually go back to where ever they are from. I met people from MT, ID, OR, AK, HI and other bum fuck locations that all had a transplant done and usually before the 100 days they were out of Seattle and back home doing whatever it is that they do. Again, my common sense would say, what's so bad about me venturing another 30 min out of the way if these people are hours away by plane? So Monday we ask Dr. Storb what he thinks. And then I shut my trap and do as told.<br />
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<a href="https://en.wikipedia.org/wiki/Fentanyl">Fentanyl </a>and I have a good time. They took bone marrow out of me and did a <a href="http://www.seattlecca.org/Chimerism-Testing.cfm">chimera test</a>. Which is to see how German I've become over the last 83 days since transplant.</div>
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Health wise I'm feeling the best I have except for this feeling of chalkiness all over my skin. It likes to show it's head right around the time I'm supposed to go to sleep in the form of itching and dry dustiness on my skin. Weird to explain but it's another pain in the ass with this whole thing. I kinda got a feeling that this is a small sampling of GVHD, but I could be and hope I am wrong. The bone marrow sampling went fine, no problems or pain there. In and on Fentanyl and out of there with the help of Lisa, while telling her to hand me the keys to drive home while I stumbled into a wall. I've noticed that I keep getting stuck on words in my head. I was talking to Dr. Storb about this resort outside the snowboard factory in Austria and could not for the life of me say the resorts name. I knew it in my head, but couldn't get it out. They said that THIS is another side effect of the Tacrolimus that I'm on. And lastly, I've been going black a bunch lately when I stand up too quickly. Lights go off in the old eyeballs for about 5 seconds and I move back and forth like a bouy in the ocean. But really, I AM feeling the best I have. Cept for the above shit.<br />
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Pretty right on for this one.</div>
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Happy New Year to all, especially me because 2016 is gonna be a good one. I can feel it. Suck a dick 2015, you're outta here.<br />
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Earned love right here. </div>
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Eddie Spaghetti texted me as he was coming in town for his first show since getting half his throat got ripped out from cancer. He did a bunch of radiation and the cut they shit out of his pallet. Now he's cranking, voice sounds better than ever and 5 months later was playing at the Kiss Cafe. I wanted to go but it was too Tom Cruise for me (Risky Business). So he came by and we swapped how much going thru things sucked and ended up laughing bout the whole thing. As he was leaving he reached into that leather and said "oh yea, here's why I came by. Here's the new cd, hope you enjoy it." Buy it <a href="http://www.amazon.com/Holdin-Bag-Supersuckers/dp/B0124KY504/">here</a>, song <a href="https://soundcloud.com/search?q=Supersuckers%20lets%20bounce">6</a> rules.<br />
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Gnar stealing my thunder with Rocky.</div>
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Gnar hooked me up with a tight ass shave for Christmas. He even trimmed up the mexi-stash.</div>
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Waiting for the rest of my hair to come back so I can grow another sweet one like this.</div>
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Shrapnel.</div>
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<br />Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com2tag:blogger.com,1999:blog-586045355739410191.post-65737098196028784732015-12-21T17:21:00.002-08:002015-12-21T18:29:33.038-08:00Week AteWe rolled into our Clinic visit last Monday and got called a "rock star" by Gail. "Your platelet counts are growing and instead of you coming in here 3 times a week, your on the twice a week program, Monday and Thursday!" Sweet I thought, cabin time here we come! We breezed thru the visit as the itching, burning and rest of the shit I have been going thru has taken care of itself once they started the taper on the anti GVHD drug. Then we got our schedule for the next two weeks of clinic visits and they had us going 4X a week. WTF? I asked Lisa to go rearrange stuff as I'd just get frustrated with them saying no and she'd honey them vs. my vinegar approach and hopefully get things lined up which sorta happened.<br />
I had clinic today. Tomorrow their drilling into my hip again and pulling a bone marrow core sample from me to see how much of the German is now me. Thursday is back to clinic and Friday is Christmas. Kinda fucks this week up for being at the cabin but at least I'll be there for Christmas, so I thought.<br />
Then reality slapped me upside the head once today's clinic happened. My PA Gail came in at the beginning and sat down, and I could tell it was gonna be serious. She said she knew I was going up to the cabin and then got a little emotional with the delivery of the rest of the conversation. "Your immune system isn't working yet John. You have been very lucky so far going up there, but trust me, your luck WILL run out. When your immune system isn't fully functioning you won't show symptoms of being sick or if you have an infection. Your body will go septic (organs shutting down) and with how far away from the clinic you are, by the time you come in, it will be too late. We see it all the time and we've put way too much work into you to have this happen. It WILL happen. Trust me." Uh...ok. Now I feel like a dick.<br />
Then she left and the nurse I had in the room, who is also a discharge nurse in Transplant / Transplant ICU said to me "listen you got out of the hospital a while ago and I can tell you that you do not want to be admitted back to the hospital under those circumstances because most of the time you don't get discharged. I see it all the time." Double dick now.<br />
So when CAN I go to the cabin? You dudes are releasing me from your care in 20 days, is that all I'm waiting? 20 days from now things will be cool? Nope, I will be cool when I'm off the immune suppressant drug that keeps fucking with me and keeping me alive. And I'll get off of that at the beginning of March. Sweet.<br />
On top of all of this, Gail said to me after the needed tongue lashing that I should write a blog about my experiences with cancer as I seem to "get it" way more than most of her patients. Yea... <br />
Merry fucking Christmas, from Seattle that is, from the Rock Star. <br />
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This will be my last memory from the cabin for a while, Schaffer (part Asian) grabbing whiskey out of the cabinet with a very Seattle like bumper sticker that was probably made out east. <br />
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Bro-In-Law Stevie and Baked Bean Becky sent out Christmas's favorite most looked forward gift, Linguicia.<br />
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And Milo got another ad with Bern helmets in a Orange County California magazine. </div>
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<br />Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com2tag:blogger.com,1999:blog-586045355739410191.post-86904330101308417952015-12-14T02:01:00.001-08:002015-12-14T02:04:47.028-08:00Week 7, the itchathon continuesSo I knew I recognized the name of my new <a href="http://sharedresources.fredhutch.org/profile/storb-rainer">Doctor, Rainer Storb</a>. When I was in the hospital one of the Physician Assistants was giving me the history of bone / stem cell transplants. These transplants were invented in by a Seattle Fred Hutch / SCCA Doctor named <span class="_Tgc">E. Donnall Thomas. There was a statue in the hall way of him, as well as various pictures and plaques because he received a Nobel Peace Prize for his work. Then the PA started talking about the dude that took what E. Donnall had done and helped shape what transplants are today. This dude he was talking about is a man who lives on Mercer Island, is 80 years old and rows his rowing shells from Mercer Island all the way into Lake Union to SCCA, every day. 4.5 miles this row is. This Dr. made the rule that the maximum age for a transplant was his age plus 5 years, as if he ever needed a transplant,then he could get one. And this guys name is <a href="https://www.fredhutch.org/en/diseases/featured-researchers/storb-rainier.html">Dr. Rainer Storb</a>. </span><br />
<span class="_Tgc">A nurse reminded me of this man while I was getting a bandage changed. When I heard her say that he was one of the most important men in transplants, I was like HOLY SHIT this is my new doctor. He now does research on getting rid of GVHD 10 months a year and only deals with patients 2 months a year. THIS is my lucky month. I'm kinda fanning out on this him and can't wait to have my get together with him tomorrow. As well as meet with my nutritionist and hopefully weigh in the mid 160's. </span><br />
<span class="_Tgc">Last week was killer. My platelets are now 79,000 down from the 124,000 the were on the first of the month. These fuckers have held strong for 13 days now. No platelet transfusions since Dec 1st. And I only had one blood transfusion last week, which was the first one in 10 days. They also cut me down to 3 visits a week to get blood work instead of the normal 7 days a week that I've been doing. Monday, Wednesday and Saturday are my visit days. I'll most likely do two weeks of this routine before going to twice a week and then I'll get handed over to my Oncologist. Tomorrow I'm gonna ask about going back in the office twice a week for a couple of hours each day.</span><br />
<span class="_Tgc">The only shit I've got going on right now is the constant itching. Two nights ago I stayed up the whole God damn night itching. 7AM awake and scratching myself like a crack head. Real impressive. THIS is gonna make me go crazy. </span><br />
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<span class="_Tgc">Looking less like a crack head, even though I'm scratching myself like one. </span></div>
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<span class="_Tgc">Lil guy won a pretty big event this weekend in Bend. Super pumped for him. Older bro did pretty damn good himself.</span></div>
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<span class="_Tgc"><br /></span>Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com1tag:blogger.com,1999:blog-586045355739410191.post-75351946661932396392015-12-08T09:05:00.001-08:002015-12-08T10:04:31.180-08:00Week 6, the light at the end of the tunnelLast week was the best one yet, for the most part. I got a red blood cell transfusion on Monday, my first in 9-10 days and I usually get one or two a week. So that was good that these transfusions are stretching out because they take 4-5 hours to do. <br />
Then my platelet count broke the 90,000 barrier where I had been stuck and hit 124,000. I don't know what the hell 124,000 means except for the fact that I know that my threshold is 70,000. When I hit 70,000 or below it's transfusion time. You reading this, your platelet count is somewhere in the 10,000 range. They keep me so HIGH because of the blood thinners I'm on. Anyway I usually loose about 30-40,000 platelets a night so that's why I get the platelet transfusion 6-7 times a week. <br />
Last week I was stoked cause I only needed 4 transfusions. Well this week with that 124,000 all time high, it held for the most part all week. I had platelets on Tuesday and today's Tuesday and I haven't laid down since last Tuesday for platelets. 7 days without an infusion. My shit was going down 2,000-5,000 a night. Actually I don't have to go into SCCA today as they gave me the "day off!" <br />
In Monday meeting I met my new <a href="http://sharedresources.fredhutch.org/profile/storb-rainer">Doctor, Rainer Storb</a>. Transplant Dr.s rotate thru SCCA to the hospital to research every month, so out went mellow cat <a href="http://www.uwmedicine.org/bios/george-georges">Dr. George Georges</a>, who was awesome by the way, in came Rainer Storb who I hi 5'd instantly. We also had or PA (physicians assistant) Christine rotate out and I got back Gail who was my PA in the hospital for my chemo treatments. We looked at each other and there was a hug right away. <br />
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What a buck fifty four looks like...the walking dead. </div>
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Clinic meeting was good. My weight at last Mondays meeting was an all time low of 154lbs, which was down 10 pounds in 10 days, and my nutritionist said that if I didn't focus on adding 1,000 calories to my daily intake that they were gonna stick a feeding tube down my nose. I showed up this week at a blistering 161lbs (with a battery charger, phone and a couple things in my pockets). Goal for next week is 165lbs, no rocks in the pocket. It's a eating week. <br />
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161lbs</div>
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Hoping to get back to this next year a svelte two bills and change, beer and all. I'm 4 months sober and in discussing the future of my sobriety with a 5 year sober friend, he suggested that being sober sucks and I should drink beer again when I'm allowed. Good advice I thought.<br />
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Cindy my head nurse said that I will probably be with this yellow team another month or so before I get released back to my regular Dr., who is Dr. Becker. In order to be released to her team, I need to be only going to the clinic once or twice a week maximum, so that's what we are gonna work on the next month. Cutting my visits down going to the clinic, spreading out my transfusions and starting to get my life back. I asked when I could stop wearing the official cancer persons outfit of <a href="https://www.youtube.com/watch?v=-0Hbu4Z4pGI">sweatpants</a>, beanie, Patagonia top and slippers. They didn't understand which blew me away. "What do you mean, that's the official cancer outfit, we see people in normal clothing all the time." Like hell you do, follow me into the meeting room, I'll pick out every cancer patient in here based on their outfits. We laughed and I think it's about time that I put on a pair of jeans for the first time since September 24th, the day before I went into the hospital. <br />
After the Dr.s left, Cindy told us that she was leaving for vacation on Friday, taking a month off and going to Germany with her daughter. Lisa and I were kinda shocked at first thinking you can't leave us, who will keep us in line, but then realized that the leash is really getting let out a little. New docs, new nurse, new hospital schedule and a new life. Cindy said that what we just went thru and are still going thru are the toughest things we'll ever go thru in our life, but it's worth it because if we didn't do it I would be dead in 3-5 years. Pretty fucking real to hear that. Buts its true, I don't think that this was the most painful thing I've ever been thru, but it certainly is the longest journey (there I said it, fuck you JOURNEY) we've ever been on. So many shitty, uncomfortable, mind fucking, things that both Lisa and I had to go thru. On top of that, you think about what Lisa has had to deal with this whole time. Not any of the uncomfortableness, pain or medications for the cancer, but having to be my daily driver, food maker, pill reminder, shot giver, clothes cleaner, shower scrubber as well as still doing everything for the kids and trying to keep them as normal as possible. All while getting really nothing in return. Because the reality is, it's been all about me. Selfish as that sounds, I guess it needs to be that way but I think I rather be the person going thru what I just went thru than do what she has had to do since I broke my stupid ass elbow on May 30th, and that is to care for a grumpy ass old man and two teenage boys that are as active as ours. <br />
I'm glad 2015 is coming to a close, cause as a glass is half full type of dude, the only thing I can say about 2015 is fuck you and good riddence. It will cleary go down as the worst God damn year in my and probably Lisa's life. <br />
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I got some making up to do in 2016, and I'm looking forward to it.Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com2tag:blogger.com,1999:blog-586045355739410191.post-85742578851233125962015-11-29T21:46:00.000-08:002015-11-29T21:46:01.873-08:00Week 5<a href="http://2.bp.blogspot.com/-Rh23OCK_iEs/VlviU5nKF8I/AAAAAAAAQwE/0wSaq_hvytI/s1600/IMG_3003.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a> A pretty awesome week in the books. Still got this itching thing going where I try and scratch my skin off to the bone, but it's not that bad in scheme of things. During our Monday "team meeting" with my Doctor, PA and Nurse I was advised and told NOT to go to the cabin as I had just confessed to them how awesome it was to go feel normal for 16 hours. To which they said that 60 minutes away from SCCA is too far. Eh...I'm kinda not really backing that advice so as a grown man I told them thank you for the advice, but I will be going there, not a lot, but when I feel right and it's right, I'm there.. The risk is worth the reward to me. And I really don't feel like a 18 hour stint at the cabin is a risk. Sorry guys, but I follow your rules to a T, but this one's not really lining up. You'd know if you had a cabin, kids, and the need to be out of the city and be by the mountain. I also started to exercise this week as well. Out of the last 7 days, I walked 6 of the days. Anywhere from a mile to a mile and a half a day. <br />
This has been tough to fit in but my nutritionist said that I will only start to gain weight when I work my muscles. So walking was the goal last week, going downstairs to the gym will be the goal this week. I got a lot of lifting and eating to do to get this 160lb body back to 200lbs. And lastly, I've been on average going into the Infusion clinic to get platelets and red blood cell transfusions 6+ times a week. Last week I only had to go 4 times. I had 3 days off, which was insane. Hopefully this will lighten up my 7 day a week SCCA schedule and give me a day or two off a week. We'll see. Anyway, stoked on last week. It was very encouraging.<br />
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Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com4tag:blogger.com,1999:blog-586045355739410191.post-68741403862710323722015-11-20T21:25:00.001-08:002016-02-02T14:05:40.144-08:00I surrenderWell, I've given in. 4 weeks and 1 day from when I was released from the pen, I finally surrendered to "this is my God damn life for now and there's nothing I can do about it."<br />
I've asked my Doctors for weekends off, just to be at the cabin, take the kids to the hill and hike and been absolutely denied by them. "Uh, not yet John. We want blood work out of you every day. You have things changing in you daily and we need to keep and eye on this." Ok, fuck it. I'm gonna just do what they tell me. You want me to take pills that burn my feet. Fine. Do daily shots that make me get daily transfusions, that then make me get reactions of itching so bad that I want to shower in acid? Cool. I'm just all in at this point and it feels pretty good to finally surrender and go with the flow. Now when something actually goes my way I'm not so bitter that I can actually enjoy the moment.<br />
Like today. I went in at 8:15AM got blood work done, then had an ultrasound on my stomach to see if I have GVHD going on in there and then came home. We called the nurse to see what time my transfusion was going to be and boom, my platelet count was thru the roof. No going back for me today. I took a nap, came down to the office and actually WORKED and then got to go to the Queen Ann pool and watch Milo dive as he's now on O'Dea dive team and swim team. As I type this now, I'm glowing. It was an awesome day. And I'll take more of these please.<br />
<a href="http://4.bp.blogspot.com/-xk_nWCJkHeE/Vk_-t5owhYI/AAAAAAAAQuk/CBqCyp4O1RM/s1600/Screen%2BShot%2B2015-11-20%2Bat%2B9.18.01%2BPM.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a>I will admit though, that this was a mind fuck week for me. The grand opening and our annual C3 sales meeting is going down in Austria all week. The reps, riders and company people have done a great job of keeping me in the loop and feeling included but it's not the same. Being there for this grand opening of the factory we've worked 15 years for to build is something that will only happen once in my life. And it would of been pretty sweet to be there to take it all in with everyone that helped bring it to reality. Anyway, Cheers CAPiTA and C3. It's been a fun ride to watch this week. Thanks for including me.<br />
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Milo hiking around Stevens last weekend. </div>
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Mac was locked in too.</div>
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The CAPiTA Mothership in all it's glory. Mmmmmm.</div>
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Gums in all his glory. </div>
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Finest group of dudes and friends you'd ever want to spend your career with.</div>
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Facetime with Cocard and Dustin telling me they miss me. This was a nice call. </div>
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The A-Team. Jess, Phil, Cocard, Backstrom, Brisse, Craven, Stevens and Blue. </div>
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Party Marty has no idea that the boys stole his credit card under my orders and charged a nights worth of coctails to it to pay for his drunk ass babble. Paybacks a bitch buddy. <br />
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<br />Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com1tag:blogger.com,1999:blog-586045355739410191.post-63393233750555602102015-11-11T12:47:00.002-08:002015-11-11T12:47:47.525-08:003 weeks out of the hospitalI've been home from the hospital for 20 days now and have been back AT the hospital every day but one. This has been an absolute kick in the teeth with the unexpected. I’ve been constantly exhausted and dealing with side effects of all the drugs their pumping me full of. My feet have burnt so bad thru the night that I have to ACE bandage two ice packs to my feet to even begin to fall asleep. And this is from a medicine that their giving me to keep me from getting the dreaded G.V.H.D. Then this blood thinner I’m on (2 shots a day) makes me have to go in a get daily transfusions of blood and platelets, to which I get fevers at night and have to go back to the hospital. But the team won’t change anything up yet as it seems all that I'm taking is needed in the grand scheme of things. <br /><br />
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Rocky keeping a watchful eye over a late night foot bath. </div>
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I got to be honest, this is way harder than I thought it was gonna be. You go thru all the build up about transplant and for the most part it's to get you thru the chemo, transplant and the stay in the hospital. That shit was cake compared to being home though. Today I'll be here from 9:30-3ish if all goes on time. Which it NEVER does. It’s unrelenting. Hurry up and wait is the name of the game. There is no possible way to plan anything because my schedule changes daily as well as while I'm here. Which can be pretty frustrating. Anyway…that’s my pity party, and I know it WILL get better, but for now…I don't feel like I'm living, contributing anything to the wife, kids or house, cause I’m just getting thru the days. I feel like Maverick in Top
Gun where I’m in a tailspin and I’m just waiting to hit the eject
button.<br />
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The good news is that we got a bunch of stuff figured out over the weekend and I can
finally walk without being a cripple. Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com4tag:blogger.com,1999:blog-586045355739410191.post-68957355267982557462015-11-03T08:48:00.000-08:002015-11-03T20:26:19.288-08:00Home LifeWell I've been home for 10 days now but have been back at SCCA 9 of those days. It's a full time job doing everything they did for me at home and then getting our asses there on the daily for blood work, meetings, testing, blood and platelets. My white blood cells have been going thru the roof, which is super encouraging. Just waiting for the platelets and red blood cells to come back on line which they say takes some time. Thus the 5 or so transfusions since I've been a free man.<br />
We met with the nutritionist last week and they want me to get 3 litres of fluids in me a day as well as over 2,500 calories with more than 120 grams of protein. You should have about 56 grams of protein in your diet by comparison. "Your body's metabolism is like a long distance runners right now. It's pulling all it's energy right from your muscles and that's why your the skinny pussy you are right now." 167lbs is what I weigh right now. Fuck me. I haven't weighed that since 12th grade and my 12th grade self would beat my old ass real bad right now too. Shit, I think Milo may beat my ass real soon. I better watch what I say. My doctors thru me for a tailspin last week too when I was complaining to them about how skinny I was getting. "Listen, do you know what you just went thru? What you did was 10X gnarlier than getting a heart or liver transplant. Doing a heart transplant is like changing a carburetor in your car. What you did was change the engine, transmission and wiring harness. Blood is an organ in itself. Then you throw immune systems in there..." I had no idea, and glad I didn't going into this.<br />
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Today I'm going in so they can pull another bone marrow core sample from my hip. Should be fun to be reunited with my old buddy Fentinol. Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com3tag:blogger.com,1999:blog-586045355739410191.post-39555666045890502242015-10-26T19:32:00.001-07:002015-10-26T19:32:18.876-07:00FREEDOM!Well sort of. I got out of the pen at 4:30PM, after serving 29 hard days of butt burning, mouth sores and a plethora of drugs. My Neutrophil count was supposed to be in the 500 range so I can have a chance of fighting off infections. Mine was around 330, but it was time to go. Doc was sure my counts would spike any day.<br />
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Once we got home I had some serious work to do. I had to build my pill case, and this is the assortment of meds they got me on right now, along with two daily shots and 3 home infusions. It took over an hour to figure out what I had to take when. Brutal.<br />
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Saturday morning we got up and off the SCCA we went for our DAILY blood draw and meeting with the team. On top of that I got some platelets. That took a good 4 hours of the day. My Doc warned me of being on the outside. "In the hospital you are pretty sedate for most of the day and when you walk, your walking on flat surfaces. You will get extremely tired quickly back in the real world, so watch out." Whatever dude, I was walking 2-3 miles a day, I'll be fine. From the hospital we went to Milo's soccer game where all the kids were unusually friendly to seeing me on the sidelines. Then after the game the whole team bowed at us and thanked us for coming. No idea what that meant until Milo said in the car ride home: "Dad did you notice we were all wearing pink socks?" Yea? "Well coach heard that you may be at the game so he went out and spent over a $100 on pink socks in honor of you." Wow, didn't think I'd get emotional on a ride home from a soccer game, but I was floored. <br />
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This guy was a little aloof to me at first. I guess my pussy was playing hard to get. </div>
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From the soccer game we went to Macs playoff football game. It was later in the day and I had a sweatshirt, down coat and a down blanket on but shook like crazy from the cold. Ended up going up to the truck and watched from a distance. When we got home, I could barely get out the truck and felt like someone whacked me with a bat a dozen times. <br />
Sunday we got up and had to be at SCCA at 9AM for a blood draw, then to meet with the team and then to get platelets and blood. 7 hours later I walked out of Seattle Cancer Care Alliance feeling like I put in a full day of work. As I was worked. <br />
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Luckily when I got home, there was an issue of Snowboard Colorado waiting for me. I flipped thru and found this. I felt like I had just pushed the Morphine button a couple times.<br />
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Monday we were back at SCCA at 8:15AM, did blood work and met with Yellow Team to update them on whats going on with me since going home. "Well my back looks like someone blasted me with a shotgun doc." This may be the beginning stages of GVHD or not, so they gave me some topical steroids to put on to relieve the burning and itching. Next up on the list was the fact that my last three bowel movements looked like I was pissing out a Cabernet wine. Blood in the piss I got. It may be an infection (ya think?) or it may be a reaction to you taking pill form drugs now. We'll keep our eye on that too. They increased some meds, pulled away others an said that my Neutrophils were in the 700+ range. Real good. <br />
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This lady was the key to keeping the family from going crazy during the hospital stay. 3 weeks she gave us. Unreal. <br />
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Funny that since I got out, people assume this shit show is over. "I got extra tickets to the Sounders, want to go?" "Hey man, lets go out to lunch, I'll buy." I wish, but being out means that I get to sleep at home. I'm under the strict supervision of the team on getting thru this next stage. What would get accomplished in the hospital from 6AM til 1AM now has to happen during the day. But I'm not not complaining in the least. I'm in the comfort of my home, Lisa's on point with what needs to happen with me, the kids are finally realizing that "wow, Dads kinda fucked up" and helping any way they can, and this is a million times better to being in the pen. It's good to be free. Kinda.<br />
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<br />Nose Dradamoushttp://www.blogger.com/profile/15051660371231094329noreply@blogger.com1