As most of you know Jeff is nearing the end of his 3 year battle with cancer. He is fighting for every day and we are asking you to join us as we gather together to Celebrate his life. I am so proud of the bravery and courage Jeff has shown over the past year. Please join with our family to show him support and shower him with love to help give him strength for the road ahead.

The Celebration will take place Sunday January 15^th  from 6-9pm at McCormick & Schmick’s Harborside on Lake Union.

If you have any photos that you would like to have included in the photo slideshow please e-mail them to ashleyaverett@hotmail.com who is helping coordinate.

McCormick & Schmick”s Harborside on Lake Union
1200 Westlake Avenue North
Seattle, WA 98109

We hope you can join us,

Katie & Jeff

So I made a very stupid choice. My latest CT scan showed enough growth that we figured we should swap my treatment, and since we didn’t want to stress my system too much around surgery we stopped my Interferon for just over a week. My neck tumors have exploded in size and I suspect the other ones did too. I had to restart the drug because I was in too much pain. For example the tumor in my left neck feels like it started to grow into my arm and cheek. The stupidest part of this is that we finally settled on a treatment of low dose IL-2 and Interferon in the end, so there was basically no reason to drop the interferon at all. Basically the treatment is going heavy on immune response modulation. I’d want high dose IL-2 instead but my body isn’t holding up very well right now so that’s a bit of a fantasy.

I want to make clear to everyone that I am entering a treatment plan I am happy with for the moment, though will probably always be pressing for higher doses or additional drugs. My mom is telling everyone that my doctors are keeping me from doing the medication I need. This is not true; they had suggested a different drug before but now have changed their minds. She got her heart set on that drug and now thinks I’ll die without it. She also cannot comprehend the idea that interferon does some good even if not enough to cure me; she believes everything that doesn’t outpace the cancer is only making things worse. It is true that the interferon does cause some problems but I think the extent to which it does control the cancer is amazing. I am also a big fan of immune therapy so I want to try this combo.  But in all seriousness please disregard most of the worries my mom may spread to you, she has lost view of the situation. She doesn’t even trust my doctors now and is trying to find me new ones, even though Katie and I are fine with our current doctors.

So a new problem is actually causing me more trouble than the rest of my healing. Apparently before surgery they saw I had ascites, which are fluid pockets in the abdomen, but I guess they didn’t care enough to tell me until after surgery. Anyway it turns out that some of my old belly pain was probably due to that, now I’m having a lot of belly pain from it. I’ve gone in twice to get it drained already and am going in tomorrow morning to do it again. They’ve pulled out like 1.2 litters the first time and 1.5 litters the second. Apparently people with bad swelling can get like 25 litters but I find that absurd, I’m so skinny that 1.5 makes me look pregnant and makes my belly ache. I’m worried the TPN is partly to blame because IV fluids cause odd water retention and swelling and stuff. The ascites itself is either from some organ doing badly and leaking, like the liver or kidney, or tumor could be secreting fluid like it was doing around my heart, or it could just be an inflammatory response, which might in part be due to interferon but then we would have expected it to improve when I was off interferon. Anyway hopefully we can find a solution besides just draining it every few days, which is very inconvenient and quite annoying since it involves a needle into the belly. I’m kind of hoping they’ll just put in a valve so I can drain myself off if pressure grows. But we need to do something, because the pain is my current biggest pain, it keeps me up and night and you’d better believe it impairs my ability to eat.

 The last real medical thing to mention is extremely embarrassing. When I was healthy I could stand from the ground with one leg under me and the other held straight out parallel to the ground. That level of leg muscle was something I was really proud of. Now I have reached the point where if I fall I cannot stand. I have been hospitalized too much recently and my thighs have atrophied. I have trouble on the stairs and think that without support items like chairs to pull up on I would never be able to stand from sitting on the ground. We’re relying on my wheelchair a lot now too for extended trips, though that’s only partly my legs and more due to the fact that I have pain from the ascites.

On the plus side Christmas is on the way and we’re spending some decent time together. I have had my energy levels pick up the last few days so I’m doing a bit more. We found out recently too that the local pottery painting store has a cool ability to make melted glass crafts. Katie and I both enjoy crafty kind of activities so she has made several ornaments and plates and stuff, Lizzy has helped paint a few figures and made some handprint ornaments and I have painted Lizzy a penguin piggy bank and made her a melted glass butterfly and Katie is getting a melted glass frog. I’ll post pictures when I have some. Also awesomely on the xmas front I know I’m getting a lot of fun things. (Mom doesn’t know how to use Amazon, which is where my wish list exists, and so I had to help her buy stuff. I’m really looking forward to those gifts.) Anyway I’m really looking forward to Christmas eve, assuming my health doesn’t mess things up I think it could be one of the best in a long while, especially because this is basically like Lizzy’s first real Christmas. She loves the holiday atmosphere. She loves the lights, and I open an advent calendar with her (she loves the chocolate), and she’s playing with Santa and reindeer toys and all that kind of stuff. It’s super cute and Christmas is always coolest for and around little kids.

No ETA yet for when he’ll be home. Still high chest tube output and his white blood cell count is up so they are watching him closely to make sure he’s now developing a infection.

Thanks,
Katie

So a bit more pressing is the condition of my heart. I went in for a checkup echo a few weeks back and the big old hole they put in my pericardium has sealed up. This is not a good thing. The cancer may have played a role in it sealing back up but it also might have been natural healing that is to blame, either way there is fluid building up again. I’m scheduled for surgery on Tuesday to open up a new window. This one will go through my rib cage for access and will drain the fluid into the sac around my lungs. It’s a bigger surgery than last time but it also shouldn’t heal nearly as easily. I have to admit though I am very worried that minor cells in the fluid will implant in my lungs and cause lung tumors. That idea really freaks me out. The doctors say it shouldn’t happen but still…

 So besides that I’ve been in a good amount of pain and sleeping a lot. My interferon has been causing stomach pain and occasionally I feel the cancer growing in my back, belly, and neck. The cancer pain I can mostly control with narcotics. I also just recently figured out that the stomach pain can be largely helped by NSAID pain meds since it seems to be inflammation based. Unfortunately I learned this a very short while ago and barely got to use it because I now have to stay off blood thinners for pre-surgery prep. The stomach issues are really quite bad. Medical pot couldn’t even help me choke down my thanksgiving dinner. It’s not so much nausea as pain and failure to digest material. I barely ate anything for several weeks and I have lost a ton of weight. I also vomited at the drop of a hat for a few days; which we think might have been due to a tiny stomach cold since Lizzy and Katie didn’t do so hot either. I no longer have a butt and all my pants fall off, that’s how thin I’m getting. I’m looking forward to being post-op so I can take aspirin again. I also will be getting TPN (IV nutrition) while I’m in the hospital and maybe for a while afterwards just to bolster my reserves a little. I really don’t expect to eat much in the hospital.

One other piece of somewhat good news is that I will be getting new tissue samples from this upcoming surgery including trying to get a piece of the lymph node under my ribs as well as pericardium wall and fluid samples. We want to see if the tumor has changed in any significant way or if it differs at all from the nodes elsewhere in my body. Knowing that may help us pin down some kind of treatment that may work.

Well that’s about it. I haven’t been up to much. Lots of TV and sleep really. The holidays should involve more family time and stuff however. I’ll try to post as soon as I can after surgery, or I’ll ask Katie to do it for me.

The stay itself was very boring with no real internet access and a broken TV remote. Luckily a friend bought me a universal remote to fix the second part at least. I slept a lot and did little else. The nursing staff was mostly good, not the best I’ve had but certainly not the worst. I did have a very worrying issue however. They almost killed me because of a typo. My meds said to take .75ml (75million units) but the conversion is actually .75=7.5million units. They tried to give me 10 times the dosage (7.5ml) because they chose to follow the units measure rather than the ml measure. I knew this was wrong right away but I almost believed the nurse when he told me it was probably just a different concentration; which could make sense. But instead I called Katie and had her tell me the concentration we have in the fridge at home. So I can’t say for sure that 10x my dosage would have killed me but it is far beyond what further research suggests a human use and it would most likely have caused multisystem organ failure such as kidney, liver, and pancreas. Even with my normal dose it turns out my pancreas numbers spiked and I got a 103.2 degree fever. It worries me a bit how easily that could have killed me. Also slightly worrying right now even though I’m taking the interferon every other day the spots in my neck are a bit touch sensitive, not outright painful but it’s still not a good sign. I may have to look into adding radiation or some new drug soon.

Anyway I’m flying home Thursday. My mom flew down to take care of me in the hospital and help me return to Seattle. I’m looking forward to being back home and seeing everyone up there. I’ve been sad that I was delayed so long returning to see my ferret; she is so new to us that I’m worried she’ll not remember me and think Katie and Lizzy are her owners. Anyway I have gotten reports that she is mostly doing well and that Lizzy loves her so that’s awesome. I hope to play with Lizzy and Yuki together asap. That’s about it for now; haven’t been up to much since I’ve been lying in the hospital bed this whole time. I’ll leave you with some pics Katie has sent me of Lizzy.

Anyway I’m in the hospital in AZ. I was at my friends wedding and pain in my chest had been building for a couple days. I went to the ER and the fluidaround my heart was back. I’ve been stuck in the hospital since. This morning they drained it again and put a hole in the sac around my heart so fluid cannot build up anymore. Anyway I’m stuck here in az for like a week. I don’t have Internet beyond my phone so a bigger update will come when I get  a laptop with Internet. 

We’re waiting on results as to what might have caused the fluid. It could be stray cancer cells or inflammation or an infection or a few other very unlikely things. The tests they run on the fluid should be conclusive however. It could have been from any number of things though, kidney failure can do it, potentially interferon could have done it, and they really were leaning toward cancer cells somehow making their way into the sack and secreting fluid. Hopefully now that it’s drained any inflammation will go away and it will be fine, but if we’re unlucky it will refill (like if it’s due to cancer).

I also had to miss an interferon shot or two because my treatment and after like 5 days of no treatment I could feel growth starting again in my left neck. I have since taken my shot again however and it caused a major fever (103.3) and was really hard on me in general, but it seems to have killed the neck pain. I’m taking that as a bit of a mixed blessing, I wish that the interferon didn’t stop working so quickly but clearly it IS working. Also during the whole fever state and stuff I missed taking all my morning meds so I experienced a day without pain meds. It was a very crappy day with lots of stomach pain from the interferon and I basically just tried to sleep through the whole day (with a lot of success even though my night sweats made it like sleeping in a cold shower) but on the plus side I didn’t feel pain from anywhere but my belly. Katie had been a bit worried that I could be having growth somewhere and not feel it due to my massive pain med dose, but that worry appears unfounded. I am by the way still way up at 135mg of oxycontin 2/day because my doctor basically says it doesn’t seem to impair me and I experience some stomach pain through it so I shouldn’t worry about having a high dose and just go with what keeps me out of pain.

I also tried a ferret for a few days. I got the one who seemed to love me at petco. Turns out she didn’t like me, she just liked burrowing into my clothing. Actually she didn’t seem to care at all about humans, or toys… or food even actually. So I gave her a few days to try warming up to me, but she just didn’t care about any of us. She would explore the borders of the area she was in and she would burrow under things but that was it. I would have probably given her more of the 2 week trial period petco gives but my heart issue suddenly came up and since Katie and Pedro already knew I didn’t expect to keep her I couldn’t ask them to care for her while I was in the hospital for an unknown duration. But thankfully petco has returns on pets within 15 days so that you don’t have to etither keep a pet that’s a bad match or put a pet up for adoption if they turn out to be a bad match. She was awesome in terms of being well behaved though, she was potty trained, wouldn’t bite, handled everything with a kind of stoic determination (like getting a bath, she clearly hated it, but she barely even struggled). She was like perfect for Lizzy to hang out with because I think Lizzy could probably have beaten her and not gotten bitten, but that kind of uncaringness about the world just really was not what I wanted in a pet for myself. I’d honestly much rather have a ferret bite me than ignore my attempts to play (though I will have to train out any biting in later ferret attempts to protect Lizzy). Anyway I feel really bad about returning her but she’s just not the pet for me.

I got a second ferret just the other night (so this may seem a little disjointed from the rest of the blog which I wrote a day ago). Her name is Yuki because Katie thought she looked like “snow or clouds” and Yuki means snow in Japanese. Katie thinks she’s the most beautiful ferret we’ve seen, I don’t know I’d go that far because I’m a bit more into the masky colorations but she is very cute. We made sure to be more thorough in our test run with her than we had with the last one. She definitely plays well and while she will nip a little in play she doesn’t bite. She squirms a bit when held but when you can get her to settle down she will stay calm for a good long while. She is probably a great mix of playful and docile for me. She also has this awesome habit right now of chewing on my beard. I really hope she keeps that trait. She basically seems to have warmed up to her new environment already. I also figured out how to occasionally get kisses from her and she reacts really awesomely to me blowing on her, it really riles her up to play. I am extremely happy with her and think she will be a great pet.

Also I am going to Arizona for a wedding between two of my friends. I’m going down on the 5^th and returning home on the 10^th but I will be in driving to Sedona on the 7^th and coming back on the 9^th so my actual time in Tempe itself will be a bit limited. I’ll try to stop by and see people if I can however.

I also now have the task of weaning myself off of my oxycontin. I went from 45mg to 135mg when my pain was at its most severe. I tried to drop back down to 90mg once the interferon took away the pain, but withdrawal was really annoying. Probably the worst part of it was that I didn’t know it was withdrawal, I thought at first it was due to interferon, but I figured it out and returned to my higher dosing and felt great. Now I’m going at the recommended rate of reduction but it seems like it will be tediously slow.

Also in terms of what I’m up to recently I managed to make it to the PAX convention up here in Seattle. It’s a gaming convention run by the web comic Penny Arcade. I also am going to Spokane in a week for my mom’s 4^th marriage. It’s going to be a really small ceremony and we’re all going to go stay at a lake for the weekend. And in October two of my college friends are getting married down in AZ so I will probably be dropping down for their wedding since my meds are currently doing well enough to make traveling really viable. Besides that I haven’t been up to much. I’ve been spending some fun time with Lizzy and I love living with her, so that at least is one bonus to come from having cancer. She really is brilliant and amazingly cute.

OH! I also may get a ferret. We can’t have a puppy because Lizzy (she might hurt a puppy) but I would be able to keep a ferret mostly in my own room and it’d be easy enough to keep safe from her. I’m working on cleaning my room and ferret proofing it. I have imposed a couple tests upon myself like keeping the room ferret safe for a month before getting a fuzzball because I want to make sure it’d be safe. Interestingly I’d probably get a ferret with cancer. There is a ferret rescue place nearby and they let you adopt healthy ferrets or be a foster home for ill ones (but not too ill); that way they retain ownership so they can pay for meds and make sure you don’t just put the animal down or anything. All the healthy ferrets come in pairs and Pedro doesn’t want two so I’d probably foster one of the ones with adrenal disease, which may or may not have developed into cancer yet, but usually does eventually. Or I could get one from a breeder or pet store, but the one I saw at the shelter seemed like a good match.

I was doing pretty good for a while, my stomach was getting better and while I still haven’t wanted to stress it because I do occasionally vomit I can eat a lot of things. I’m avoiding stuff like greasy McDonalds burgers though since they are one of the things that have made me vomit recently. I also started getting nosebleeds with my vomiting, sometimes regardless of if things came out my nose. The blood in the vomit was worrisome but we think it was all nasal based. Oh I also have more hiccups than normal. I know I normally have a lot, the pain meds can cause them, but this is more than even my new normal; I think perhaps the tumor is touching a nerve that triggers them.

Sutent seemed to be working pretty good but my urine output quickly started to dwindle after about 5 days. I was also getting blood tests and my creatinine started to rise again. So we abandoned sutent after 9 days, it was apparently the cause of my previous kidney failure. Already my kidneys are repairing themselves again however; I didn’t even need dialysis since we were so vigilant this time. We did feel like maybe it did cause a little shrinkage in the time I was on it, but we didn’t measure well. Unfortunately now it’s been most of a week since stopping the drug and when I come off sutent the tumors grow back with a vengeance (it’s called a bloom actually). The nodes there have definitely increased in size and number. I haven’t slept well or eaten well (because pain and headaches cause nausea in me) for the last few days because the right side of my neck feels like it’s trying to tear itself off my shoulder. I’m on full long term pain meds (40mg Oxycontin 2x/day) as well as maxing out my breakthrough pain meds (2 vicodin every 4-6 hours, I accidentally had too many actually but luckily it takes a long time to damage the liver, 15mg oxycontin every 3 hours, and32mg of morphine every 2 hours). Due to me taking so much so continuously and still being in pain we’re upping the doses, primarily we are potentially doubling my oxycontin regimen. There is some minor hope that this pain is exacerbated by slight inflammation from a cold or infection or something, because I have a slight fever and ear pain, but the fever could just be due to cancer and the ear pain might be due to the cancer nibbling at the tubes linking the ear to the throat.

So now we’re trying to get me in for surgery to remove the neck tumors. They probably won’t go for anything but what they can easily reach, so nothing in the chest cavity, but I’ll take what I can get. I am rather sure I have mentioned before that they are very resistant to doing surgery. My primary doctor actually wants me to do radiation but I’d prefer that be a measure of last resort, and my radiation consult agreed that for my neck he’d prefer surgery, but my chest warrants radiation. So we have questions out to several surgeons and know in a few days if I can do surgery. If we can’t do surgery I might need radiation to remove my pain, but as for actual treatment we will try interferon again. I know I think it made me an invalid by wrecking my legs for a few months, but I also think it held my cancer totally stable during that time. It also had some nasty side effects like really high fevers. There is some chance it could hurt my liver or kidney too, but it seems the most powerful treatment we have on the table.

Also one of my grad school friends clued me into a study they are doing that involves using HIV to mutate T-cells so they only target cancer and then replicate like a virus. I have always wanted them to try killing cancer with programmed viruses; it was what I’ve considered the best solution since pondering the problem in high school. This isn’t quite what I imagined but it’s so close as to be nearly the same. Anyway the study thus far only had 3 leukemia patients but at the end of a year they basically were all cancer free. I really want to see if I can get signed up for that. Odds are my tumor won’t have the same surface proteins needed for the existing agent to work, but if I could convince them to investigate my type, or something close enough, I might be able to try their drug in a year or two (which is about how long it would take to make and get ready for a human to try). I want that. Bad! Even if we can convince them though it will probably cost a huge amount of money, so a lot of stuff is conspiring against me here. But I very much hope that I’ll be able to try their meds, I have not thought anything else had nearly the potential for curing me, almost everything else I have just expected to keep me alive.