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The Daneman Family Blog |
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This blog is to update family and friends on Allie's health status. Please feel free to subscribe for updates to be sent to your email address!
Thank you all for all your kind thoughts and prayers they are greatly appreciated!
For those who want to help meals are always a great way to help.
Thank you.
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So yesterday my right leg was a bit sore...I didn't think too much of it but when it was worse today for no reason I had to do something. It definately wasn't right...so made the call and let my oncologist now that I needed to get in there ASAP. I was in with Radiation Oncology in an hour and had my first radiation session @3. The nice think is that with my leg and the fact that it's bone the treatment is very short and much different from what I've already been through. Total treatment is 5 days so I'll be done by next Thursday. I'm also chasing a longer term option with imuunotherapy or a bio engineering....we'll see how that goes.
I also got another CT for the ENT and he says that there is something that he can do, it's not bad but based on my last surgery he thinks it'll help. That means that I'm going to have sinus surgery soon as well...gonna chase that tomorrow.
All in all there's a ton going on but they're all positive...
P.S. Big hugs and positive thoughts going out to Mrs. Pinedo...she's going through a rough time but will pull through. We have complete faith that we'll talk to her soon.
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So I had a full body + bone scan and they found some issues, one on a rib and another on the femoral head of my right leg. We did an MRI of the leg and there is something in the bone in the had going into the neck. My doc said take it easy to not break something so my riding trips are on hold for a bit...otherwise we're going to watch it closely. if anything turns for the worse I can radiate it or do high dose IL2. The high dose IL2 would be a doozy...like 2 weeks of absolute hell and then recovery. The radiation wouldn't be too bad but I really don't want to radiate something that could be from my age and activity level. We'll see...there's no pain right now so it's not necessarily an issue yet so we can only hope that thinks won't change. I'm going to the sinus doc tomorrow and hoping for surgery...we'll see. More to come.
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Well I haven't posted anything in almost a month and nothing has changed. Unmedicated I still have headaches on the right side. I'm trying the neurological method and it's doing exactly as I forecasted, putting a bandaid on an issue that's not resolved. I can't believe modern doctors would rather cover an issue that they can't figure out, unbelievable. Anyway I'm still frustrated and now I'm pulling Jen in to help out as I'm fed up. I'm getting more scans which will hopefully come up clean and we'll be back at square one again. It's a catch 22, you want nothing to be going on but then again you might find out root cause...I think I'd rather have nothing going on and they're still clueless. I seriously think it's still a sinus issue that's directly affected by or a creator of my headaches. Either I'm very sensitive due to all my treatment or it's a new thing but either way when my headaches flare my sinuses are draining on the same side. it doesn't seem like rocket science but it must be. One of the sinus docs did see something that "may" be a contributor and if my scans come up clean I'm going back to him and figuring this crap out. I actually want surgery....because if it still hurts after that then we know for sure it's not my sinuses ;) More to come...
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So I went and saw the Sinus man at the U and he says I appear to have a sinus infection....ok. So he gave me a few Zpacks, some roids, a couple tips and kicked out the door. He says plan B is go to the radiation oncologist. Hmmm...this sounds familiar....like they have no fricken idea what the problem is. The sinus guy doesn't see a real problem and the head guy says all is well and improving. Great...this is just crap. Anyway....I'm gonna go through the treatment and see how it goes...
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So we spent a bit over a week on the East Coast with family, took the kids for a family vacation. The kids behaved and we had a great time, saw a ton and had a great time with family we hardly ever see. Like a dumbass I went to work the day after we got back, mostly to have an easier Monday but also to get back into the routine to make jet lag easier.
Either way I was in the ER on Saturday for one of my headaches. This time really sucked though....nothing worked. The IV stuff that usually does the trick didn't work. It took over 24 hours for the headache to get completely knocked out, I'm just glad it did. The funny thing about the entire experience was that I had a plan to call my sinus doc anyway and see him about my headaches that seemed to be sinus related. I was put farther up the line with my ER visit though ;) I think my frontal sinuses on my right side are all clogged up, will find out tomorrow. I hope I go under the knife next week to get my sinuses takes care of once and for all. See last time they only cleaned out the left side...which is doing pretty well. This time around they're going to clean it all out, both sides and I can't wait to be pain free after almost 2 months of suffering. The whole brain tumor crap throws wrenches in the mix for easy solutions to problems that many people have. Finally we've exhausted the other solutions and this is the probably solution. Fingers are crossed...even though it's the beginning of the allergy season I'd really like to breath again ;) More updates to come.
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So we were down in SF this past weekend for my bros 30th birthday. It was a blast....didn't sober up until we hit the halfway point on the plane back ;) Beyond that I'm off almost everything...just some nasal steroids for my sinus headaches. Still trying to figure out what exactly the issue is but it seems to be getting better without any new meds in the mix. My radiation oncology doc wants me on some crap to deal with pain again but I'm hoping to avoid it...we'll see what happens.
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I'm finally off roids completely and have the acne and other crap from it...a pisser and I'm used to it. I am feeling better though. It'll probably take 6 months to get all the toxicity from the chemo out but hey....I'm not on anything so I can only start feeling better from here on out. We have a family trip planned at the beginning of April and the weather is getting better up here...spring is coming. I'll update more as it comes...I think I have an MRI next week...
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| So today after almost a month of roids I'm done. I actually slept last night for the first time in around 2 weeks with minimal interuptions. I'm exhausted today 'cause my body remembers what sleep is supposed to feel like. I also have a sinus infection from hell...had to see the doc today and am glad I took the day off to try and get some sleep and repair. I am actually starting to feel better even without sleep...hey I'll take it anyway I can get it. That's all for now.. Happy Friday |
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So I'm back on roids again from my headache over the weekend...being a total A-Hole to everyone which I really hate. I'm trying to watch my P's and Q's but it's real tough...I'm starting to wean slowly today. My sleep started getting affected last night...hopefully that'll change as I start the wean.
As to being emotional...I'm sure part of it has to do with loosing my grandpa and it sinking in but all there ER visits and chemo is also a contributor. I cried on the way into the office today...seems like I'm shedding more tears on the bike these days...maybe because I love riding so much and I'm just thankful to be on the bike. Either way...It's been kinda wierd. More to come...hopefully the headaches don't come back as I wean off the roids.
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| So the weekend went pretty well, my grandpa Ben Davis passed away easily and painfree last Thursday. We were initially told that there wouldn't be a memorial so we went down south asap to support my grandma. We all cried together...still can't believe he's gone. Otherwise my cousins happened to be in town at the sametime so we had a great place to stay and a bit of stress relief seeing people around the city.
I also had damn headache again and had to go to a local er in sf. After getting doctors talking and all our ducks in a row we got things taken care of. I think I went off steroids to fast..so I'm back on roids but pretty much painfree. Gonna half to just buck it up to deal with the damn chemo side effects...just praying that it peaks soon.
I also had the pleasure of going to an herbal dispensory which was kind cool. Much more established and better than WA, we may get there eventually. Anyway, it's back to the grind this week. it's sucks we missed the twins birthday party but what are ya gonna do...this crap doesn't have a plan it's by happens. Ttyl |
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| So I got $50 off the fine and a 6 month deferral...I can live with that. As to the weekend...we had a death in the family...I'll update the blog when I get more info. I kinda feel like crap acually but what are you gonna do...more to come. |
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| So I'm waiting here in Bothell traffic court waiting to try and get out of a ticket. I have a brief statement prepared and I'm takng the cancer card, may as well try and get something positive out of it right ? Anyway, as I waited a mom and her son came in probably to the same reason I was there. I just hope I have the priviledge to do that with my kids. Anyway..my boss told me to do whatever I want this week, gotta get some crap done today but will probably go in tomorrow. My headaches are almost completely gone, I really need to be off the steroids to get some sleep, I was ip again at O dark thirty I the morning. Should be off the roids in the next few days...thank god.
As to the other part of this post I wanted to throw out a formal invite to call me. I don't know if people don't want to bug me or feel put off by my past calling prowess but I'm officially needing some additional human contact. I haven't talked to many people in a long time and I'm sick of it. Call me, if I can't answer you'll get voicemail and I'll call back in a reasonable amount of time...ttys. |
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I made an unscheduled visit to the ER on Friday night...had to leave work early due to a headache that had been getting worse for the last 24 hours. It came on like the others...sinus drainage and pressure and a headache on the right side. Right when I got home I got a lollipop hoping to nip it in the bud to no avail. Nothing worked in my arsenal except the calming effects of one med. I hit my limit and it was time to hit the ER, we called ahead and there was a 4 hour wait at UW...so we went to Evergreen. Luckily my oncologist was oncall and already there...so we didn't expect any issues getting dealt with fast and correctly. I also realized on the way to the ER that my lollipops had expired last June....oh well, time to get more. Headache cause was inflammation on the right side, doc won't say it was the chemo but I'm 99.9% sure it is. My side effects have intensified drastically in the past 1.5 weeks after chemo so I knew it would hit my head eventually. Either way...we were taken care of and sent on our way.
Now here comes the frank and can be construed as nasty part so if you don't want to here about feces just stop reading ;)
So as many of you know heavy narcs have a side effect of constipation. Well I guess I was a bit on the dry side and didn't catch the problem fast enough before I got into trouble. Today was day 3...no bowel movement. I'm a 3x a day guy....so you can imagine the backup. Anyway...I've been taking stool softeners, laxitives, and even a few suppositories to no avail. At 3:00 this morning I hit my limit...I woke up after a night sweat and my stomach was killing me. I tried a suppository and no dice...went to go get the big guns, an enema. There's nothing like walking up to the counter with an enema box at 3:30 in the morning....I think everyone knows what the problem is. So when I got home and read the directions it seemed like a 2 person job may make it easier, Jen was like "hell no unless you can't do it yourself". I can understand, having your husband's smelly ass in your face would turn anyone off. So I tried it and....holy crap. Once I got it all in we're talking immediate temporary relief. It wasn't all of it but remember Van Wilder, oh yea ;) I've been catching up all day and as a side note I get the runs from that crap you drink for stomach CT's which I had bright and early today. Well that fact just helped get things out..and now it's like a calmness has fallen on the land. Wow....what a relief. I've also never sat on the toilet as long as I have in the last 24 hours. Lesson learned...start the softeners and laxatives immediately after narcs, period. I took today off as a recoup day...should be back to full steam tomorrow. That was my weekend...hopefully won't happen again any time soon.
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Yesterday we went to a new guy @Swedish to get a....third or fourth opinion...can't keep track anymore how many docs we've seen. Anyway, this guy looks like Einstein reincarnated...exactly the same. He had some smart things to say as well. He pretty much summed it all up for us that the other institutions couldn't. First, melanoma doesn't have a cure and since I've been stage 4 I will most likely succumb to it...when, we don't know. Nothing new there....I actually think I'm really starting to digest this fact as I've cried much more lately listening to certain songs for no apparent reason, I think that's my therapy. Second I'm at a state that I've thrown everything at it and my options are thinning on what they have available today. I do have another option of high dose IL2 if I get peppered with tumors or one that's unresectable. Otherwise if something pops up they'll just cut it out it possible and some new stuff may be coming out soon. Third, he doesn't believe that having someone suffer when you can't see positive results is a waste of time. We've heard whispers of this but nobody has said it outright before...so that was nice to hear. He also said that 6 months of most chemos is all that's effective, if it hasn't killed the cells yet it most likely won't after that point. Makes sense...
So here it is in a nutshell. We're going to play it by ear, I'm going to try and go full boar healthy diet mixed with some detox. I may also do some other big netaurapathic options like high-dose vit c which has had some positive results. Otherwise we're going to wait and see...and hopefully do some fun things to enjoy the time we have. By the grace of god my grandparents came through with some serious bill relief so we'll be doing much better pretty quick for the long haul as long as I can keep my scans clean. Tata for now....
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| I think the decision to continue has almost been made for me. This was
a rough week from puking, headaches, and overall soreness to name a
few.. We still have to make the final decision...I'll keep everyone
posted. I really wan to detox...6 months of chemo is catching up to me
I think. |
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We got some great news today that nothing has changed and possibly shrunk a tad in an MRI today. So yippeee...kinda. To most this would be a godsend and yea it is...except you're not in my shoes. See I'm voluntarily doing this chemo and my doc says minimum 6, max 24 so guess what I need to decide after this round...to continue or stop. Now most of you would probably say it's a no brainer but it's not that easy. I have 6 months of chemo toxicity in me and it's starting to take it's toll. I'm getting various little new side effects popping up and the more I take, the more toxic it gets and the crappier I feel. So I'm sure many of you are saying it's worth it after everything I've been through right....well guess what, 1 thing I have realized is that until they have a cure I'm going to enjoy things as much as possible so the choice is mine. The only way to understand is to be in my shoes or another cancer patient. Looking at the big picture as of today I'll probably do a few more rounds and then detox. As the weather gets better and we do more outdoor activities I won't want to willingly feel like crap anymore...so that's when I'll quit. Unless something changes...that's the plan. So...enjoy your daily lives and enjoy feeling good 'cause when you willingly make yourself feel like crap it puts things in perspective ;) Tata for now....
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Just a quick update...all is well, feeling decent and trying to get back to normal after the last round, the snow, and all the holiday nuttiness. As to a little tidbit of interesting info...I got my golden ticket today...still in shock on the details and opportunities. Hey...may as well enjoy all the fringe benefits that comes with being a member of the club nobody wants to be in ;)
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Ok...for all of you that live in an area that snows I feel for you. I miss the rain !!!! I think I officially hate the snow now....
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Sorry for slacking with the blog entries but I've been working like crazy, it's especially funny as this is a chemo week...but it's been going ok so far. Mainly just head to toe soreness, some dry mouth and general fatigue. Today was the second day the kids were home from school because it's closed, if you haven't heard we've had back to back snow storms up here so we're trying to dig out. Ben and I ventured out today and got some xmas/hanukah shopping done and it was awesome...the mall and roads were empty so we were done in record time. I guess the ice and snow scared everyone off the roads...oh well we got what we needed to get most of our shopping done. Tata...try and stay warm out there...
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| First Off We want to wish all our friends and Family a Happy Chanukah, A Merry Christmas and a Happy New Year! It has been nice going into this holiday season with a bit of good news for the first time in 6 years. Although I am working like a dog I enjoy those that I work for and with. This year has been the most challenging and crazy year of our lives, we would not have made it through with out all the love and support of many people, not to mention all the good vibes and prayers that are sent from all over.
Allie and I want to mention that there has been either 1, 2 or 3 so far Secret Santa's that have dropped of little envelopes in our mail box and...... well we are eternally grateful, we are overwhelmed with gratitude! We feel so loved by you and everyone and can't write this without crying..... Thank you Thank you Thank you! |
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So as usual I'm working like crazy and Jen's yelling at me about it. It's real hard to be involved with work and not be completely in or not at all. There really isn't a halfway point....all in or out. Anyway....I'm trying and besides being tired I'm dealing with work pretty well.
Otherwise next week is another round and like death and taxes I'm not looking forward to it. I can honestly say that has done a certain amount of brain rotting. I'm not as clear as I used to be and the chemo fatigue makes it worse. Hopefully once I stop the chemo and after a good month of nothing I'll get some of it back. I'm also catching myself taking more risks and making stupid decisions that I wouldn't normally make. I sitll have it in check and am forcing myself to look at things more. I'm also making myself be more of a team player at home...I've told Jen I'll help with whatever she wants but the kids have been nutty lately and a team effort is more needed now than ever before. Maybe next week I'll be able to focus more on my duties at home since I'll be in and out of the office. Tata for now...
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So I woke up this morning to surprise....I guess I drank a bit too much liquid last night and had an accident. Wow....haven't done that in....I can't remember the last time I did that. I did it in style....I was dripping wet. I'm sure everyone has seen the famous bell curve of age...I hope I'm not on the other side of it already ;) Thanks to all the birthdays well wishers...we're going to one of my favorite restaurants tonight and doing something after. Enjoy your holiday Friday...it's nice to be off on your birthday.
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So this last week of chemo wasn't too bad...I survived and it was a bit like the first week. Hopefully this trend will continue ;)
Not sure if everyone knew but Jen's grandpa finally moved up here to be closer to us and we're all glad he's here. Unfortunately he had a heart attack yesterday so we all had to go to the ER to see what was going on. At 99 it's not that easy for him to take stress let alone a heart attack so he wasn't doing too well. We all went to the ER and hung out with him until the end...it looked like he went pretty easy and hopefully pain-free. He was a great guy and I only had the pleasure of hanging out with him a few times. We'll be toasting grandpa Thursday night...hopefully everyone else will too ;)
I'm going to see an ortho surgeon tomorrow about my elbow...it was getting better while I wore an elbow wrap but I lost it so it's hurting again. Either way I hope something will get done about it soon...which it should. Tata for now...
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So my elbow has tendonitus..supposed to talk to an ortho surgeon (no idea why I was referred to a surgeon).
Otherwise I'm on another round of chemo. Mental note...try not get sick from your kids when you're going through chemo...it can compound side effects. Last night kinda sucked...but I made it and felt better today and worked form home. More fun times in a few hours. I'll post an update on how the week goes...
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So like an idiot I made the appt for my elbow MRI at the crack of dawn today but I made it. Just an FYI to all...it sucks to get an MRI of one of your extremities, I had to be a pretzel for 1/2 hour and it hurt. I have to wait a few days 'cause I did the MRI at Evergreen but I looked at it and saw a bit of fluid in the joint. Don't know if it's a little or a lot but there's fluid so we'll see what the recommendation for treatment is especially since I start another chemo round next week.
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So I'm back and we have some good news. The big tumor has shrunk and the little one is still pretty much nonexistent. We don't know if it was from the temodar or the radiation...but for now we continue with status qou. If the headaches continue or we have a repeat of last round I may have to get back on some type of pain meds.
We need to bring up the headaches with my main oncologist and come up with a plan, otherwise we're just going to keep going. I have another scan next week and BS with more doctors....more will come.
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Throwing up a quick post before I'm out the door.
Last night I had a bad headache but controlled it. As I mentioned since last Friday my last day of chemo I've had headaches coming and going but now I'm worried. When I notice it affects speech, etc. it's a problem. I had superwoman get me in there for an MRI and a followup in an hour. I just want to tell you all out there that my wife can get more done than some doctors at the U. I had an MRI in an hour of her calling and a followup 2 hours after that....that's why I have her take care of appointments, etc. she's that good at it. In fact...hmmmmmm...business op maybe to pay some of these bills...heh, you never know. TTYL.
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So yesterday was the first day since earlier this year I actually felt like my brain was back to normal. I was slammed all day yesterday and I was able to adapt to changes, think on my toes, and recall memories quickly and execute. I was tired at the end of the day and my throat was taking a toll as well because I was talking all day.
Next week I'm getting scanned up the wazzo and then BSing with docs about what we find. It's a bit stressful but I'm getting used to it...so whatever happens, happens.
I don't remember if I mentioned it before but my left elbow has started killing me in the last few weeks. I don't know if it's tendinitus or arthritus or what but it fricken hurts. I've figured out that it seems to be directly affected by temps....so as it gets colder it hurts more. Advil helps but it's never given me this much trouble before. Gonna bring it up with the docs and see what they say.
I'm still having some memory and word recollection issues which is related to chemo...but hopefully it'll improve as my brain gets better we'll see. Some of it is permanent...but I'll manage.
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All I can say is I'm relieved that this week is over. It was definately the worst yet, this drug is totally cumulative...the docs have no idea 'cause they've never done it themselves. Last night I actually got one of the big headaches but I controlled it enough to go to sleep. I have a slight one this morning and am working on resolving that but I'm 95% better than I was yesterday. Think of having the flu, being really hungover, and just running a marathon....that's how I felt through most of the week. Practicing for the golden ticket has been great this week actually...amazing at how much of a difference it makes to a certain point, then I have to pull out the big guns.
The headache kinda scares me a bit...it's either the temodar working (because the gamma knife didn't kill everything), the gamma knife still working because the temodar beat me down enough to actually cause more inflammation, or something new. I'm going to try and pull that MRI up a week due to the headaches...it's not very comforting at all. Besides that I'm feeling great today besides a little calf soreness and a slight headache. Supposedly next week is gonna be crazy at work, we have a big deadline on the 31st so it'll be good to in the mix. Based on today I don't think it'll be a problem to be in the office. More to come as we get more info....hopefully it'll be good news ;)
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Another week of chemo began last night. It's getting harder I think...feeling a bit of crustiness so I took some of my naturapathic medicine to feel better. I think it's definately building up though and I'm gonna tell my doc that he's full of poop that it doesn't build up. Otherwise just got my stitches removed and my voice continues to improve. I have a little cough but as things get better it should calm down. I'm still working on the golden ticket and I'm finding out more and more about legal issues, etc. So far it looks pretty cut and dry as long as you're not stupid.
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So I'm still attempting to rest my voice...as much as I can at least. Still haven't gotten my stitches out...that's happening on Monday. Otherwise I got a ton of crap done today including going to the dump. Well right after I emptied the truck of course it started raining so I'm getting on the freeway and the fricken rear end busts loose. I try and pull it back and then the length of the truck just screwed me so do a 180 into the guard rail. Luckily nobody was around so I turned around and pulled off to check it out. Eh...a dent on the front, back, and my alignment got knocked out. Jumped back in the truck and booked home. I was more pissed off that I couldn't save it...oh well, that's why it's called the crap truck I guess ;)
Next week is the next round of chemo...hopefully it doesn't get any worse than last time. Once I get these damn stitches out I gotta get back into the gym.
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So i've been nursing my voice and it's showing promise. My doc said the more I shut up the better it'll heal. For now I'm working from home..should be back to the extended talking on Monday in the office.
Otherwise the golden ticket...yes the golden ticket ;) There's a great initiative here in WA numbered 692 that's entitled "medical use of marijuana act". Well guess what...I qualify. All this law does is allow a qualified person and their caregiver the ability to be in possession of a 60 day supply. The doctor of the qualified individual must write a letter or addition to their medical record that the benefits outweigh the risks..which I'm working on. It's weird...but it may be legal for me soon and since I can't drink this may be my new avenue of legal enjoyment.
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| You wanna talk about a trip it's really wierd being awake during a surgery. It was all local with a bit of happy juice via IV. I watched the scapples, heard the drill, and all communication. There were a few nurses, the doc, and 2 residents. It was a bit freaky at first but then awesome. Now I have a taste of what my brother goes through at work. Beyond that I'm up and around, eating like a horse,and ready to get out of here. Should be home by lunchtime hopefully. |
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| So I'm post op....luckily no general but a wierd experience being awake during an operation. Im doing really well, should be home tomorrow. Voice isn't back yet but should be once the inflammation goes down. |
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This week of chemo wasn't too bad....just some old injuries coming back and the aches and pains associated with that.
Pukes = 0
Crusty = 0
Aches and pains = 2 and still counting
Overall = not too bad
Otherwise I'm begging to come back to the office on a ramp up schedule. The more I'm away, the more I miss. They're also hiring more people in my group which isn't bad to fill in the cracks , but it doesn't give me the warm and fuzzies in the job security department. Beyond those 2 items the the kids are doing ok, ben's in therapy and the more we're hanging out the better he's getting I think. Jen's working herself to death which is great on the money front but not all that great when it comes to the fact that she's coming back form a 7 year hiatus. Luckily her hours will be less next month...maybe she can get more painting in and we can both keep the house better maintained.
More to come...
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| Well, Ben our oldest son has had some hurdles and successes. Today he passed the test for Advanced White Belt for Karate!!! We are so proud of him. He is also taking an AP Mad Scientist Class after school on Wednesdays and is loving it so far! He started Boy Scouts with most of his fellow 2nd graders this year and is loving it ! Right now they are doing their 2 big fund raisers which is selling Christmas wreaths and Popcorn so if you are interested in helping out and funding his Boy Scout activities for the year by buying Popcorn and/or a Wreath let us know.
Therapy, we finally broke down and got Ben into therapy..... He is hurting so bad and is so angry and probably feels as helpless as we do in respect to his dad's illness..... some days are really hard with him and some are ok... Today was bitter sweet it started rough and ended with such a sweet spot I am so proud of him. My little angel.........my heart breaks with the knowledge that he is hurting and their is little I can do to comfort him especially when I too and hurting in many of the ways he is too. But for know I will take his sweet success and achievement and know he too is doing the best he can under such a tough circumstance. |
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| Please RSVP TO JUDY or the Daneman's if you intend to help out this weekend as soon as possible.
Thank you
jjtfodge@hotmail.com
thedanemans@daneman.net |
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| Hello everyone,
There is a fence building project the Daneman’s need help with. It will be a 2 day project, September 27th and 28th. On the 27th starting at 11:00, they would like to start taking the old fence down and then put up the new post. Hoping that all goes will, on the 28th (at about 11:00) they would like to put up the new fence. The new fencing is used and in good shape! As of now, I don’t think they have enough wood to re-build the whole fence. If anyone has ideas on where they could get used fencing to complete the project please contact jen and allie.
If you are able to help, great! Bring you gloves, hammers and whatever else you need to build a fence!
Thanks, Judy |
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The great side of cancer treatment is the fact that I've been home for a good part of the summer and I've seen a marked improvement in my relationship with the kids. Ever since any of the kids were born I've been working all day or sick in the hospital or in bed. Now I'm feeling good decent and the fact that Jen's working a ton I'm having to pull up the slack. So the fact that the kids are asking me to do things for them,etc. is a great thing. The only downside is that the kids are now acting out more because they know I'm sick and don't want to loose me or Jen. So we're getting them help and hopefully things will calm down soon.
Work...well that's a interesting topic. Last Thursday was another run of layoffs and it was kinda close...it hit my group (which is quite large) but luckily most of the people I work with and myself weren't touched. Phew...the other kinda crappy thing is that I feel like I'm getting preferred treatment and was told by my director to stay home and work to avoid stress,etc (remember I'm customer facing). Well here's the kicker...if I feel up to to going into the lab I sure as hell want to go...so we'll have to work on that. My boss and I have been talking about it. I went in last Monday and it was fine...next week I start chemo and I'd really like to push myself to go in again because this chemo crap may last awhile. I guess I shouldn't bitch but realistically I don't want my bosses to hold back work and not being in the lab I know I'm not getting the work I want. I've just been doing busy work...whic is boring and gets old real fast. Eh...I'll keep hammering my boss about it.
Next week is the 2nd round of chemo...I'm not too worried about it, the only thing that has worried me lately is the fact that my hands have been very tingly and hurting. It may be from the chemo, the weather, or both. Either way it bugs me...we'll see how things go.
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Sorry for the delay...been working and catching up. So last Friday Jen and I went to a restaurant we haven't been to in a loooonnnnggg time and as we headed towards the bar bumped into 2 strangers...namely Snaider and Rooke. We talked and ate until closing and then went to their hotel to hang out. After 2 1/2 hours of laughing so hard with Rooke that I puked we went home because Jen had to work on Saturday. It was never so fun to warm your hands on a hurricane...you had to be there ;)
On Saturday Jen went to her first ballet class and then we headed downtown to meet up with Rooke and Snaider at the W hotel. Again we strolled into the bar and low and behold more old faces...namely Jack, Hurst, Angina, McCusker, Kilgras, and the Shrimper. Now the party was on...the debeachery began and didn't end until the wee hours of the morning with Jack calling us all stupid.
Sunday began with a great brunch and then we all headed to Qwest field for the Hawks game. Great game until the hawks lost in overtime and the popping off began. No fights to report. The day ended with a quick dinner and everyone parted ways. We HAVE TO PLAN THIS AGAIN AS A YEARLY EVENT !!! we can even change venues each year. It was a complete blast and I want to throw out there that it wouldn't have been possible without Snaider and Jen. Words can't even describe the event...it was a completely stress free weekend, must have more of those ;)
I also wanted to send out a thanks to Janet, Leah, Bill, Judy and crew for cleaning our house and yard. The help we're getting is incredible and nothing I can really say can thank you guys enough. Every ounce of it is appreciated immensely.
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| Thank you my little bird friend because the Apple store goddess smiled down on me today and said, "Jen, we will replace your iphone free of charge! Now fly be free!" So with a smile in my heart and on my face I left that apple store with a new 2g apple phone free of charge. No more pee soaked unworkable iphone for me!!! |
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I'm going to post up on a synopsis of the weekend later...first day onsite back at work so I'm kinda busy...
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| First: Allie and I want to thank each and every one of you that helped out and worked so hard on our home this week and especially this weekend!!! My goodness the light of day for the first time in a while can be seen in many corners! My own private art studio ....... Love it!!!!!! There are no words for all that has been done except words of gratitude!
The Bagelman Surprise went off without a hitch and Allie was smiling from the inside out and so were those bro's I don't think I have seen so many guys with a glisten in their eyes along with a sparkle! Thank you boys for making a very special weekend for Allie and I. He said talking about the old times and creating some new ones as old farts together was good times and that he had not laughed that hard in a very long time..... I just know that you boys can bring the laughter and make all the bad stuff go away in a heart beat when your around him. For a weekend I know he felt normal again, he himself again, and that is far and few between and to him that is worth its weight in gold or perhaps motorcycles!!!! :)
I am nothing short of gracious for all of you, and you that have closed your arms around us and picked us up. If I can't find the strength to have faith in god but perhaps I have more than enough strength to have faith in the love you have for Allie and the kids and I, and that will guide us through this journey to a safer place. ******************
************Thank you thank you thank you.****************
We love you bro's and all of you and you know who you are, especially those who went above the call of duty you are truly amazing! |
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Ok, I'm posting again today...actually a minute after the first essay.
First, the fact that all these activities, groups, and "things" exist for breast cancer just sucks. What about my cancer.,..and others for that matter...yea well you get the point.
Second, related to the first point I called this group called survivor northwest. They have this great flier with all these activities and stuff they do and here's the catch, they only take women in their group. WTF !!! I called and asked for stuff men can do...it's fricken weak. Not even close to the survivor northwest and it's just shit that I can't join. See that stuff pisses me off too...and it happens all the time.
Ok..back to surfing the internet and trying to scrape up work to do.
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So jen has this secret weekend all planned and I guess my interrogation techniques suck. All I know is that it's around here and some people are coming into town....I can hear you guys that know laughing ;) Anyway...I'm sure it'll be a blast, she always puts together awesome stuff and I can't plan myself out of a paper bag. I was going to plan a big 35th for her but all my health crap buggerd that all up. One of these years I will...
Work is going ok but I'm just sitting around twidlling my thumbs most of the time. MOst of you would ask "what's wrong with that ?" and the answer is "a ton". See I have a work ethic that if I'm sitting around, I'm not needed...which isn't a good feeling. My job is hands on in a lab so I had a feeling this would only work to a certain extent..and I was right. The only way to be busy is to be in the lab where all the action is...whether it's nuttiness or the anarchy that usually happens at work...it's part of working in the lab and I've gotten used to it. Now most of you are probably thinking I'm crazy to want to go into work but now you know why...that's where the action is.
Unless you work in a lab you have no idea what it's like. Basically there's a little room packed with people all banging like monkeys on laptops with conference calls and people talking on bluetooth headsets. There are little mock meetings between groups of people and people hovering around computer screens looking at things. Then there's a big window into another huge room full of 7 foot racks and cabinets with these big supercomputers in them that do every aspect of making cellular calls. Every computer has a job that allows you do something your cellphone does..and they have to be maintained and that's where I come in. I work for a huge company that makes some of these components and I'm onsite support with one of our customers for one of those components. The component happens to be the center of the entire cellular network, so as you can imagine my coworkers and I are quite busy ;) This is why working from home is hard...because i'm missing out on everything I just explained. I'm missing all the mock meetings, I can't replace a server or hard drive from home, and it's kinda hard to service my customer when I'm not sitting next them. So...although I'm extremely grateful that my bosses have allowed me to work from home, I don't think I can do this very long. I think more practically I'll work from home when I'm going through a chemo round or the crap hits the fan again...so i'm gonna talk to jen and then my boss and see what they think. As I've said all along...I want to be more normal again and commuting and doing what my job entails is part of that. Nobody really understands unless you're in my shoes...and I really wouldn't wish this upon my worst enemy.
Think about it this way...you go to the doc and they say "we know that at some point in the next few years you may die...but we don't know when." What's the first thing you would say to that ? Well you either have a million questions that they can't answer or none because you're in shock...or both for that matter. many of you have always said that you don't know how we deal with it...well you don't have a choice and any of you would probably be in the same boat we're in but everyone handles the bumps in the road differently. I'm just glad I'm still married....many marriages fall apart from this stuff because the healthy person can't handle it and you can't even understand it unless you're in the boat. When you've seen your spouse loose bodily functions and let it go on themselves it's kind of hard to take. Projectile vomiting when you're not at a party is also an eye opener for most people. Seeing your spouse suffering and there's nothing you can do kinda trears you up as well. That's just a taste...but everything is good now. We take every day as they come and enjoy it as much as we can..and anyone in our shoes would do the same.
I guess the last thing to post up today is cancer treatment and what people think. Every cancer is different and they have different treatments for every one. Unfortunately melanoma is one of the worst ones and it's very hard to treat due to the fact that it can go anywhere in your body so the treatment is ongoing...it never ends until you croak or they come up with a cure. The goal is to hang around as long as you can until they come up with a cure and until then you're fighting fires. I'm not looking for sympathy...just that all of you should go to the dermatologist on a regualr bassis and if anything looks questionable...remove it. The only way to know is to byopsy it...so don't let the derm guess...get it off and know for sure. Yea that doesn't sound great but this coming from someone that has already made the mistakes...don't make the same ones. Wear sunscreen, don't get burn't, and no matter what go to the dermatologist frequently and get off anything remotely looking "not normal".
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So working at home creates an amount of laziness that I've never dealt with before. Jen's kicking my ass to do something...and it's starting to sink in a bit.
Thanks go out to Janet Pantoja and half of the Burgi (Ariana) for coming over and helping out Jen with the house. Yea I need to help out more and I don't really have an excuse....but either way the help is greatly appreciated . I have to get over a pride thing and letting go to receive help from people, I've always been independant so it's hard to recieve help for anything and it's kinda admitting that we can't do it on our own...another sore spot.
As to the health and goings on of things I've got a week left of rest before the next round of chemo. I have no idea how many rounds of chemo I have to do...my doc kinda left the door open which blows...but atleast it wasn't too hard to do the first round. I have a bad feeling that it's not gonna be as easy the more rounds I do but the doc swears it doesn't get any worse. Well back when I did biochemo the second round was horror...that was the one I lost all muscle control and they had to stop the drip because my blood pressure got too low. Ofcourse they start it right back up once my blood pressure jumped back up again...it's medieval I tell you... they seem so advanced yet the best they have just kicks the crap out of you. More to come...back to work.
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So me and a buddy went on a camping trip up to BC this weekend...Lake Monk to be exact. Great weather and great roads...we had a great time. Back to work in the AM...from home which I'm still not used to yet.
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For the past 10 years we've wanted to go the Arboretum, which is a cool little area of Lake Washington near the University. Anyway, we finally went and had a blast until Toby and I were side swiped by another family member's boat and we went over. Of course it was into the lilly pads and mud but after the initial shock Toby and I did pretty well. We got to dry land and recovered the canoe. It was actually warmer in the water than the trip back in the wind. We had a blast even with the unexpected swim...next time we'll get a row boat ;)
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Tonight is the last night of chemo, the last 2 nights I've had to medicate to sleep and kill headaches but that's about it. I've been taking the chemo at night for a reason and I think it's been a smart move. So I'm pushing to get off STD (Short Term Disability) and get back to work next week. My boss has a ton of work for me but he wants me to take it easy...which I plan to. I've been off a bit over a month and it'll be wierd to work from home but I think it'll work out just fine. I'm sure I'll be back in the lab in no time and hopefully back to the daily grind. I never thought I'd miss 405 but I do, probably because I miss commuting on my bike.
Pukes: 0
Crusty feeling: 3
Food intake: normal amount
Overall
feeling: Besides the past 2 nights of medicating and slight headaches I'm overall doing pretty well. Luckily it's the last night for a few weeks.
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| Hello all, the Share The Care meeting will be September 7th at 2:00pm. We will be having it at Janet and Jose’s house (Jen’s Mom and Dad).
They live at: 16008 Mink Road NE, Woodinville, WA 98077 425-788-9273 Janet Cell 206-910-6205
Coming from Woodinville take Woodinville-Duvall Road about 4 miles and turn right on Mink Road NE. House will be on the left after the downhill.
Coming from 520, stay on it and it becomes Avondale. Travel about 4-5 miles. Turn right on 159th Street and it will dead end into Mink Road NE then turn left. House will be on the right on the corner 160th & Mink Rd.
Parking on the grass in front of the house is OK.
If there is anything else before the meeting we will e-mail it out!
Thanks, Judy
fodge4@verizon.net |
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Talked to my boss...gotta get my ducks in a row and try to get back to work next week. Otherwise this is going ok...not too bad yet.
Pukes: 0
Crusty feeling: 2
Food intake: normal amount
Overall feeling: Not too bad. I've been eating without anti-nausea pills today which is risky but didn't blow up in my face. Fingers are still crossed. |
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These little pills are kinda scary. They have a special tinted bottle so they don't get any light and the warnings are out of control all over them. My lollipops don't have any warnings even though they can kill a kid if they're taken (they reside in my fire safe for safe keeping). Anyway, here are the specs so far:
Pukes: 0
Crusty feeling: 2
Food intake: enough
Overall feeling: slight headache this morning with a tinge of crustiness. No Nausea though and ate breakfast around noon. All is well so far but it may get worse as I ingest more. Fingers are crossed.
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I've been prepartying for chemo today. Eating like a horse in preparation for the best diet in the world. Nothing compares to the chemo diet. Not only do you not want anything to do with food but the smell of food generates an instant crusty feeling that usually results in an exhilarating vomitous activity..it's exceptionally satisfying. It's the only diet that works...trust me ;) I read the little sheet that comes with all your drugs from the phamacy...you know the one that everyone chucks with the bag. I loved the statement that says that the "vomiting can be extreme". I'm really lookin' foward to that one...can't wait ;) The decision to voluntarily take these cytotoxic pills that are filled with satan's serum is kinda hanging over me as not the smartest decision I've made lately. Anyway..the fun begins in a few hours...can't wait.
P.S. I've been listening to Dane Cook and Louis Ck all day so excuse the comedic blog entry. I'll update as the fun begins and the play by play. The current stats are:
Pukes: 0
Crusty feeling: 0
Food intake: a ton
Overall feeling: pretty damn good
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So the plan is that I start chemo on Monday. I have no idea how we're going to pay for the drugs because I (like a dumbass) bought new calipers on Ebay and jacked up our checking account royally. Jen's gonna do some fenagling and I promised not to buy anything again without checking. See this is wierd too...normally buying little things like that are no brainers so now it's starting to sink in that we're financially strapped because of all these bills,etc. The good news is the the bills should slow down because I'm doing chemo at home and after a week of it I'm gonna either call my doc to get relaeased back to work or do some real sole searching if I don't think I can work. I'll be working from home but if the chemo rips me up we'll see. The doc didn't say how many rounds I have to do which is also fricken scary. It's open ended BUT I'm actually realy happy it's happening now. See in fthe past I always have to do treatment during the summer which destroys the riding and fun season. Doing it in the winter shouldn't be too bad because the weather sucks anyway. The updates on the Blog should start flowing...when I'm going through treatment I usually vent a ton. The doc says the treatment is usually well tolerated...my fingers are crossed.
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So Jen and I went out to dinner with my director and manager tonight to discuss things. It was great, we actually didn't talk shop much at all. What we did talk about for a brief time was that they were going to let me work from home if I wanted to...which I happily said hell yea. I need to get a doctors note to release me to work and all should be good. I can come in as I want or work from home to avoid stress,etc. Obviously I'm working for awesome people that want me around, I'm very happy about that.
The next thing is on Friday we're having a discussion with my main oncologist about what I'm going to do. See I'm to the stage that the docs ask me what I want to do, they don't tell me what to do anymore. I'm not sure if that's good or bad but hey, atleast I can take it or leave it. So I have 2 choices that I know of, DTIC in a pill or going back on GMCSF that I started back in April. Personally I'm leaning towards the GMCSF because it was very well tolerated and they want me on it for year. Yes you can pull your jaw up..a year. The DTIC in a pill is 6 months...which also sucks. These docs don't care about how you survive for 6 months financially but will try and kill the cancer. Unbelievable..but that's reality and what some of these treatments entail. SO...we wait until Friday and see what life will bring in the near future. TTYL..more to come.
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So this morning I had a followup appointment with the sinus surgeon. All went well except that I had a headache when I woke up. This felt like the beginning of "the" headaches and in fact it turned into one. Luckily I was heading to UW so I got an Actiq lolipop to try and nip the pain. It kinda helped...but I had to take more stuff when I got home. The revelation of what's been going on, how I've felt, systemic disease, and what I'm doing is that if I just sit around things are going to get worse. I have to take action now...so I need to start chemo again. I've had the longest remission after chemo even though it sucks and I feel like total crap. Well..I either feel like crap temporarily during treatment or when I'm in the hospital on my last legs...so I'd rather feel like crap temporarily and still be around loving life. I'm already off so the timing is probably perfect....I gotta just do it. Amazing how fast things change...I just called my director this morning and we were going to meet about going back to work in 1 or 2 weeks. Heh....we'll see how that goes once I start chemo. This really sucks..but I'm the one that needed to relaize what I need to do...so here goes.
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| Allie had full body CT scans at the beginning of last week and Friday we went to get the results. Yes we were nervous going into the appointment...... Anyway, we went and usually if there's an issue they call so if we don't get a call generally all is well, but not this time. The doc is all worried about the central nervous system however they found a 5x8 mm nodule located just above the kidney on the adrenal gland doesn't worry him too much yet. It is not big enough for PET scan or a biopsy so basically we are watching and waiting.... perhaps for it to grow so they can tell us whether it is nothing or something. THis nodule was not there 3 months ago on the previous scans so..... it is something new. In 3 months they will do follow up CT scans and we will see where we are then. All of the Oncologist are more concerned with his brain and any new developments there. Allie will have another MRI Sept 3rd.
Thank you Rick and all of you stepping forward for the share the care... More info will be coming out shortly.
Courageously yours,
Jen |
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So I had a full body CT at the beginning of the week and today we went to get the results. You think we're nervous for all of these....you guessed right. Anyway, we went and usually if there's an issue they call so if we don't get a call generally all is well, but not this time. The doc is all worried about my central nervous system so I guess some mystery meat (5x8 mm nodule located just above the kidney) on my adrenal gland doesn't worry him too much yet. He says we recheck in 3 months and otherwise all is well. Are we a bit stressed...hell yea...do I have time to worry about it...hell no. I hate this crap, the roller coaster up and down and I don't know if anything helps anymore. I'm not in active treatment because all I can really do is hardcore chemo which I've already been there done that. We have some options if things go to hell and a handbasket....this is just really getting crappy and out of control. So now what...well my head feels pretty darn good these days and I'm bored as hell. I'm going back to work..probably in a week or so. What's amazing is that I miss the daily grind...I wonder if other cancer patients feel the same...because I know that all the normal people don't ;) More to come...can't wait to get back to work ;)
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| Hello All !
There have been many of you out there that have said, "if there is anything you need just ask!" Well sometimes it is really hard to ask for help perhaps it is an ego thing or perhaps it is a fear of crossing a boundary that could hurt a friendship. Allie and especially I have come to a point where trying to manage the normal everyday things of our household have become overwhelming. There are weeks where it feels as if we have lived at the UW hospital all week, due to the mass amount of appointments, then when we get home there is still the cleaning, laundry, cooking, yard work, Paying bills and all the paperwork that goes into dealing with a serious illness. There is not enough hours or sleep in a day let alone energy. The emotional toll is at an all time high for me and I feel I have hit a wall going 100mph.
So, we have decided along with our family and some close friends and the help of the Cancer Lifeline that we are going to try the Share the Care Program, and we are opening it up to all of you that have offered to help us in our time of need.
The Share The Care™ model provides a road map on how to take a group of ordinary individuals (comprised of friends, relatives, neighbors, coworkers, and acquaintances) and turn them into a "caregiver family" to provide individuals and families with the help they need to meet the daily challenges of caregiving.
Judy Fodge is going to be the coordinator for this. If you are interested and you live locally or want to help in some way, please contact her at *** jjtfodge@hotmail.com ***. For those local, she will need to know what is the best times of the day or evening is good to be able to attend a meeting that will inform everyone more about the needs and for you to say this is what I can and want to do and this is what I can't or wont do.
Please email Judy and let her know you want to come and join the family of support.
********* jjtfodge@hotmail.com **********
Thank you for soul mates,music, art, love, life, dance, writing, motorcycles, friends, family, children, blogs, animals, the ocean, laughter, and the generosity of others. |
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I'm 2 days out, the nose has stopped bleeding and amazingly I've had no morning headaches for the past 2 days. Fingers are crossed the trend continues otherwise I have 2 full weeks of recovery. More updates to come.
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So the doc found a sinus completely clogged and said it was good we went in. Amazing when they actually listen to the patient and the fact that I said screw it...do the surgery. So my left nostril is bleeding a bit which is normal and we're dealing with it. Since the doc found more to do I have 2 weeks recovery instead of 1...with 3-4 weeks as the total recovery time. Eh...whatever, I'll know in the next few days if the headaches stop when I get up in the morning that it worked. That will tell me better than any scan they have...my fingers are crossed.
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So the surgeon doing my sinuses already tried to convince me to not have the surgery. Why you ask..because I've been home draining my sinuses constantly so they look better than they have in awhile. The problem is it's impossible on a regular basis so I told him that if I can get any benefit from surgery then let's do it...so we're on. They moved it up 1 day and I guess I'm first...have to be there @05:45. Without coffee I may become homicidal but luckily I should be knocked out before I really need it ;) Since I'm not working there's even more of a reason to just do it. They told me that the main recovery is a week until regular activities and 3-4 weeks for complete recovery. My fingers are crossed that these little headaches I've been having get resolved...I really hope. I've had these little headaches for the past week and half....they come and go and have only needed Tylenol or nothing so they're very manageable. Obviously I need the little headaches to go away completely to go back to work,etc. I really hope my sinuses are the reason but time will tell. I know that my brain doesn't like things going on at all...like inflammation. Since I'm off steroids the inflammation is increasing which is totally normal...but the headaches can increase as a result...which is why they have me on a drug that's supposed to take care of the pain. Well...I hate drugs and really want to get off 'em all...time will tell and my fingers are crossed...
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So we had a real sobering appointment with the radiation oncologist, his nursing assistant, a resident, a rep from Cancer Lifeline, and a new doc for Palletable Care. We had to talk about the end...and what happens leading up to the end. We had to talk about it in '03 when I had my will, health directive, and Power of Attorney drawn up so it sucks to hash all that up again. Anyway we got a ton out on the table and this new group called Cancer Lifeline almost seems to good to be true. They're promising all this help for us so we'll just wait and see what happens. They seem genuine and since we've never really asked for help, actually getting help seems to good to be true. I guess we'll just wait and see....kinda like what we're doing about the tumors. We just do MR's every couple weeks and see what's going on.
I miss work...but if I could see the future I'd know what to do next. As long as everything continues to go in a positive direction I want to go back to work after my sinus surgery. If things don't go in a positive direction I don't know what I'll do....I guess just get all my ducks in a row for disability,etc. It's real fricken scary to even think about being disabled when I feel pretty good right now and physically I'm fine. I'm just a worker I guess....it's like I need to work or I feel worthless...not adding my $.02 to society....it's wierd to not work. I've always worked so this is very foreign...but I guess I just need to get used to it. Hopefully it won't last long...that's all I can hope for now I guess. I really want a normal life again...but normal has changed drastically and I guess that's what I need to get used to. More to come...I have an MR next week.
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| Allie and I wanted to thank all the people that made our 10th wedding Anniversary wonderful and memorable. Thanks to my folks and some secrets kept by some certain people an amazing surprise was had during our camping trip. By the way, we had a good time despite 2 sick kids! For all those that made all the extra efforts where you made them, thank you. It has been so bitter sweet.....
We had a wonderful time in Monterey and our friends and family were very generous and loving and incredibly funny.... Jake I saw parts of you I thought I would never see! Also I think we made some new friends too! :) Those bro's that came out, you know who you are, big hugs. There are no words ..... your love and generosity has been amazing. To my Big brother you are a life saver! |
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| Home is where the heart is………
*********You are my home.
My piece of mind.
You are so very much a live in me as in you.
So a live,
I can taste you, feel you, love you, smell you, and breathe you in.
********I love to touch your hands.
They are so strong and weathered.
Your eyes tell a story a thousand pages long,
Yet, they capture me in an instant.
Your arms,
When they surround me,
There is no place I’d rather be,
because, right there and then, I am home.
*******Your Laughter,
the sound, of it is like a sweet breeze
on a spring morning, it carries me.
********In the days gone by, your wisdom has astounded me.
In places I was blind, you gave me eyes to see.
********You are the light that brightens.
The love that fills me.
You are my home.
********************************************By: Jennifer P. Daneman 7/24/08 12:45am |
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Well the docs told me to go out on disability to reduce my stress...so I did. The timing was perfect actually with my annual trip to the moto races in Monterey...so I had a stress free vacation for a week. Hung out with friends, family, and my so for our 10th wedding anniversary. We had a great time and feel refreshed...time to get back to healing and getting better. I feel better already...off steroids and have been weening off the Lyrica. The stuff is nasty and has been making me a real ahole. The side effects are like steroids so I'm wanting to get off it as well. I think the inflammation was the cause of the headaches and the ER visits and the Lyrica isn't really needed. Gonna try and ween off it...worst case I have to ramp it up again to kill the pain....we'll see, fingers are crossed. Otherwise I've got a boatload of appointments coming up to plan stuff and I have surgery on the 8th for sinus surgery. I actually can't wait for it...my sinuses have been a PITA for years and supposedly the last guy didn't do the best job on them....they're gonna fix them. I really hope I can get off these drugs and the MRI's keep coming up with better news. I'm start missing work probably in a week...actually I already miss the lab. The daily crew in the lab and the anarchy....amazingly I miss it. I'll be back soon....
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Jen tells the truth as the docs say....and you take it as you like. My thoughts are take it as it comes...and do what I can while I can. The docs make these statements based on statistics and data they have. Anything can or won't happen...so we take it as it comes, that's all we can do ;) I love everyone and want to spread my love and appreciation of everyone close to me while I can...which can be a long or short time...who fricken knows. For now we take 1 day at a time and see where the road takes me.
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| Yesterday the Dr.s said that it is very likely Allie will get a new metastisis in the next 6 months and extremely more likely with in the next year. How severe I do not know but they started looking at his spinal fluid because once it goes there he is terminal. So if he presents with any symptoms that might indicate something there they will do a spinal tap to look. We want to keep that clear of Melanoma cells no matter what!!!! They said that we should start talking to palatable care and Allie to make sure to build and leave a legacy for his kids.
I am reeling ...............
The good news is the swelling around the tumor has gone down thanks to the steroids.
The Lyrica has been working his head only hurts when he coughs or moves his a certain way.
He has not has to use any other pain med except tylenol. |
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| Cancer has more side effects then just the physical ones. The emotional ones are devastating........
the financial ones too.... but I think the emotional one are they worst. They leave the deepest wounds the deepest scars. I can say I am so fragile right now and all I want is to have Allie to get better and to be the man he wants to be. The Lyrica while helping with the pain the medication may cause mood or behavior changes, such as anxiety, agitation, and hostility. I found out that all of the meds the steroids and pain killers can cause these things not to mention being in constant pain. He is truly not himself and it is so not his fault and it is out of his control. .....It's just really hard.
Here is a poem I wrote last nigh.t My mom may edit it.
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
Losing you
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
Losing you bit by bit, piece by piece
as if losing pieces of a puzzle one by one
everyday.
It feels as if it was only yesterday
when I held all the pieces
ever so sweet, tender and funny all the same time.
Now its a double take
I am Losing you bit by bit, piece by piece
as if losing pieces of a puzzle one by one
everyday.
It feels as if it was only yesterday
when I held all the pieces
ever so sweet, tender and funny all the same.
Now its a double take
Is it really you or just a glimmer
of the man you used to be
Carefree
jumping without a parachute.
Now every step
is so carefully calculated
and manufactured.
Nothing organic remains,
Just a few scattered memories,
pieces of time not forgotten,
but still fresh enough to taste.
I am losing you.
I am powerless.
No air.
>>>>>>>>>>>>>>>>>>>>>>>>>>>
5/5/08
Jennifer P. Daneman
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
Thank you everyone again for all your undying support and love.......I think I would colapse without it. |
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Now the docs are saying that I need to stop working and I'm on bike restriction. So I'm going on Short Term Disability for now and I can't ride...am I bitter, yea....but realistically my head hurts too much to care. This is the first time I've ever been restricted on riding..so I'm a bit freaked...I don't think the shock has sunk in yet. Jen's a mess...she knows how much riding means to me but I really just want my head fixed. I've never had chronic pain like this before but now I know how everything doesn't really mean much when you're in constant pain. They put me on some serious drugs that can kill the kids...so it's in the firesafe which is kinda freaky. I don't know what's going to happen with Laguna...I'm either flying or not going at this point if I have surgery which I'm actually leaning towards. I want this fucking tumor out..my brain really doesn't like it in there. You gotta just weigh the risks...and when you're in constant pain you just want it to stop...however that can happen. I just want to thanks everyone for helping us out during this time...I hate discrupting everyone else's lives because ours if a fricken mess right now...so thanks again. More to come as we get more info...otherwise all I can say is enjoy life and live it up painfree...because that can change in an instant.
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So I had another headache from hell Monday night....was in the ER all night and then spent the whole day at the U with docs for swallow surveys, an MRI, and talking between helmet changes with he Radiation Oncologist. At this point I have a decent amount of inflammation around the bigger tumor which is creating my headaches. No more bleeding and the tumor hasn't grown...also they did a lumbar puncture to check on tumor cells in my spine and it was clean...which is a big phew, if I had cells in my spine I'd be in deep poop. So as of now they're giving me some neurologic meds and increased steroids to try and control the inflammation. I asked about getting it out and they don't think it'll guarantee headache relief...so at this point we'll try this method. My fingers are crossed that this will be controlled soon because I leave for Laguna in 13 days...so time is becoming a limitation. If I get the tumor pulled out I wouldn't be healed by Laguna supposedly...so I don't really have a choice at this point. We'll see how it goes...I'm hoping this will take care of it..I have to be in good shape to ride otherwise I'll have to fly...which I really don't want to do. More to come...
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I was in the ER all day yesterday, supposedly the big tumor had some inflammation that pissed off my brain. Back on steroids with a mix of pain killers and I was on my way. I'm 100% beter today and back at work...now we're waiting for an answer on what the hell we do now. Like is the tumor almost dead so all this goes away or what...we should find out today.
Also...we haven't had internet at our house for almost 2 weeks. Supposedly it's up...so I'll have to get everything hooked up and running tonight when I get home.
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So I haven't posted in a while because the dust is settling. I'm only doing naturapathic treatment right now and am not planning on anything until the tumors are all dead in my head....or more dead. I can't risk more bleeding because I'm already not happy with the results from the last one (tongue issues, swallowing, etc). I'm still on stupid steroids so my sleep is jacked...but improving. I'm off steroids on Friday...We're off to our college homecoming this weekend for a little break and then getting prepped for my big motorcycle trip in a little less than a month.
We also saw a sinus guy @UW because now everyone is saying there may be a link between the sinus pressure I feel and the headaches. The sinus guy didn't specifically say that there's a link BUT that my sinuses can be fixed/improved with surgery. So...more cutting...but I'm real happy about this one because I deal with my sinuses daily...and the last time I had surgery they were perfect for years. Supposedly the original surgery wasn't done as well as it should have been...so it's gonna be fixed this time around. Right now the surgery is planned for early August..shouldn't put me out for more than a week.
I'm also still chasing my throat issues with a laryngologist to see if there can be any improvement...fingers are crossed.
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So I'm a bit over a week out of the hospital and feeling decent. Besides the coughing, choking, and hoarseness, I'm doing ok. I'm seeing the laryngologist early in the AM to hopefully give me more colagan to get me back to where I was a week ago...fingers are crossed. I did some work on my bike...have a little ride next weekend to prep for my big Laguna ride in a bit over a month...can't wait to get out on the road.
As to the subject about "everyone's hurting in some way or another" refers to everyone's economic situation...especially when gas is >$4 a gallon and the medical bills are rolling in. People need to prioritize things...and since I've NEVER asked for help, hopefully the people I'm posting this for will realize that I don't ask for anything, every...unless there's a reason. I guess the real kicker is that I'm not in the situation that we're gonna loose the house or anything like that...but it's all about living right ? All I want to do is live a "normal" life, which isn't really asking for much right ? Hopefully some people will think about that a bit...
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Ok, so I haven't really detailed the issues I've faced in the last week...so here it goes. This last week went real well on the GMSCF, in fact I did surprisingly well until the end of the week. I had my headache from hell Saturday morning ( I think ) and was in the hospital until yesterday. I'm so happy to be home but I'm worse off then I was before. The right side of my tongue appears to be paralyzed now and I'm talking like an idiot. They have no idea if I'll get it back..and now I'm having issues chewing on the right side of my mouth at all and swallowing again. So that's the real great part...we also found out that GMSCF can increase brain bleeding if there's any reason that it could happen...well guess what, melanoma cells have a tendency to bleed as they die...so whalla...I'm screwed. Now I'm really in a rock and hard place because if I keep screwing up my brain with more bleeding I'm gonna sound like more of a bumbling idiot and it's going to greatly affect my life, more than it already does. At this point I'm done with the GMSCF for the next 2 weeks...and we'll see what happens after that. I'm thinking I need complete brain recovery/healing until I go on with GMSCF...at least that's what I think is the smartest for me. Otherwise I'm back on fricken steroids so my sleep is shot, face is breaking out, and all puffy with all the other side effects affecting how I already feel...which is like shit.
Well the good news I'm back at work...but I think I'm going to leave early because there's not much going on and I'm not feeling all that great. TTYL. I get to try and kill rats tonight in the chicken coop...since I don't have to talk or swallow I guess I should be fine ;)
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We've found out a lot of info on what could be going on, everything from a known side effect of GMCSF increasing brain inflammation to some tips on helping my swallowing. For now I'm relieved to be home and my head isn't hurting anymore. I'm supposed to take it easy for the next week and then get back to my regularly scheduled activities. Thanks for everyone's warm wishes and help....it's been GREATLY appreciated.
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| Allie is starting to regain his feisty self. The pain level is about a 3/10 but he is still using the pump. He is not using as much pain meds so he is much more alert. The pain is changing in that it feels more like pressure versus stabbing whether this is good or not remains to be seen we have not seen the dr.s this morning yet.
For those who know his drainfade story he is certainly having trouble living up to that the meds are causing problems urinating and he had to be quick cathed last night to empty his bladder.
When we hear more from the doctors I will post but it is a comfort that Allie is seeming to be feisty pissed off and wanting his computer!!!
P.S. Please reserve calls and and refer to blog till we get home. We are checking email. If it is an emergency then please call.
Hugs
Jen |
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| Allie will be staying another night at the UW hospital. His pain is still being controlled by heavy meds.
The Bleeding that occurred is stable and has not changed. The blood is inside of the tumor and they feel it is because the Melanoma cells are dying. Melanoma Cells have a propensity to bleed out and a little bleeding is normal from the gamma knife but this is kind of a double whammy. Blood in the brain is a foreign and it irritates the lining of the brain and causes swelling and headaches. He will stay at UW until there is a way to manage his pain from home. They have put him on steroids for the swelling and hopes the does the trick. In the mean time it is hurry up and wait!
Jen |
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| Allie is continuing to be monitored here at UW Medical Center. The pain has not subsided and they are still giving him heavy duty meds. We have not had an up date yet from the Emergency CAT scan from this morning. We are waiting for the Neurologists to come and speak with us.
Jen |
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Last night Allie had a severe migraine headache (Allie says it feels like someone stabbed him in the head with an ice pick). After taking several oxycodone the pain did not go away. In the morning the pain reached 8 (out of 10) and they went to the ER at UW. At the ER his pain reached a 10 and he vomited.
A CT scan showed that he had bled in his brain at the right temperal lobe from the tumor site. A follow up MRI showed that the bleeding occured last night and this morning. The Bleeding has currently stopped. Allie was admitted and will remain overnight for observation. A follow up CT scan will be performed in the morning.
Bleeding in the brain (hemorrhage) can cause sudden headaches, neurologic losses (paralisys, weakness, loss of speech, loss of vision, confusion), nausea, vomiting, seizures, and loss of conciousness. So far Allie has had all but the last two symptoms. Melenoma cells have a propensity to bleed out. |
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Well I'm actually kicking myself for taking this week off because I'm doing "ok". It seems the less active I am, the worse it is...so I'm trying to keep busy. I'm not saying this is a walk in the park...I'm just used to feeling like death warmed over so this isn't all that bad. I'm counting my blessings and I haven't hit the worst of it yet....I'm done with this round next Tuesday and supposedly next week is gonna suck as well. We'll see...my fingers are crossed. To understand how I feel...the worst has been like I ran a few marathons back to back and the soreness and pain you'd feel after ;) That's the best explanation I can think of...also most of my old Lacrosse injuries have come back...my knees are hurting, left shoulder, hands...and a few other things on top of general soreness. The kicker is that if I go to my class (I go to a hard exercise class 2x a week) I feel better as long as I'm hydrated...so I'm going to keep this up to hopefully feel as well as I can. More to come...
P.S. We're coming down to Cali for the OPA Reunion at the end of June...we've been given tickets and money for the trip from our friends...so we're going !!!! See ya'll there...
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So today we met with the oncologist...it's going to be 14 days on and 14 days off...for a fricken year. We'll see how this goes....for now I had to start today to be off treatment and hopefully well enough to go on our Laguna Appetizer overnighter in June. Supposedly the 2nd and 3rd weeks are the hardest so I'm going to take next week off and see how it goes. Fingers are crossed that this will be easy...but time will tell.
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OK the good news first. Allie's Bone Scan and CAT scan are clear.!!!!!! The Bad News: Our Oncologist Said that Allie has or had Pneumonia since December. So they wanted Allie to take a course of Antibiotics. Allie and I felt that this needed to be investigated further before he popped some more pills. Also with the amount of Doctors he's seen and the scans....It just does not make sense that this would be caught now. The insurance company has declined the request for coverage on the GM-CSF twice and our doctor is currently going into an appeal process. I checked the Livestrong website and they are not accepting letters for grants until 2009. If I am going to ask the drug company for help the appeal has to be declined twice. Ok I am frustrated I need a drink and a babysitter!!! I will let you know more when I do. Also Thank you to KIm and Teresa for their comp tickets to fly to California for our Reunion in June. Thank you sooooo Much!!!
Also I need to say several very special thanks ......
My Dear friend Kim, has raised money to cover the cost of our trip to the UOP/Omega Phi Alpha reunion . Allie and I are amazed and overwhelmed with the love and appreciation. Thank you Kim!!! I love you sis!!!!
Also the Cottage Lake PTA is buying Build a Bear animals at our school carnival for our three kids. Again amazing!!!
We are floored with Gratitude there are no words....
Thank you Angela, Curry and Fodge family and the Book club girls for loving me and my family.
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Hello everyone.......
Well we have had the follow up MRI and the findings are that the little tumor is dead. The larger one that is on the rt has swelled a little and there has been a little bleeding around it, this is all normal. Also there are signs of dead tumor cells in the middle so the Dr.'s are really happy but want to keep a close eye on the swelling so he will have another MRI in 6 weeks. Today he is having full body CAT scans and a Bone scan. This is first bone scan he has ever had in the 5 years of this battle. I requested it because currently his disease is systemic which means that he has no tumors except the one in rt temporal lobe that was radiated and any cancer is micro scopic floating around his blood system just waiting to stop somewhere and start growing.
Adjuvant treatment:
We had 3 choices 1. Temadar which is the pill form of DTIC a chemo drug that is used for brain cancer. The problem with this one is the side effects as well as it suppresses the immune system. With Melanoma you want to boost the immune system not suppress it. 2. Leukine/GM-CSF a white blood cell booster that is used for patients who just had bone marrow transplants.It is not currently FDA approved for Melanoma. There was a study 5 years ago that show this cut reoccurrance by 50% all the other treatments have maybe 20-30%. There are very low side effects and this is the least toxic of them all. 3. MDX 010 is a clinical trial of a new imuno therapy drug, the side effects are horrendous not to mention possibly permanent.
So we are going to go with the Leukine/GM-CSF currently we are trying to get the insurance to cover it as it is like $2600.00 a prescription or 300-600.00 an injection.
Both the Melanoma Specialist, Naturalpathic oncologist and our regular oncologist as well as my gut tell me this is the right drug along with the Iscador(mistel toe extract).
Allie is determined to have fun and to have a fun summer so he is concerned about how severe the side effects will be. He needs to be in the best shape possible for Laguna secca as well as the treatment. We have had a few summers wrecked by going through treatments so I totally understand where he is coming from. When he went through Chemo the first time it happened the summer of my 30th birthday. we had planned to have a big bash and then it just got swept under everything.
Well in the name of having fun Allie and I and a few friends will be in Monterey CA the weekend of July 18-20. The 19th is our 10th wedding anniversary and on the 18th we are having a big dinner to celebrate at a restaurant on Cannery Row. All our friends and family that can make are welcome to attend. Just give me a heads up so I can add to the reservation as well as tell the name of the restaurant.
ok again think you all for your love and support and Happy Mothers day to all you mothers!!!!
Also thank you to the school district for a full scholarship for the full day kindergarten the twins are going to in the fall!!!
To contact me email me at : redvixen@drainfade.com
Thanks Jen
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So we finally found out what the mysterious rash is. I went to my Dermatologist and she told me that it's really bad acne from the steroids. She's putting me on Oxy 5/10 and sent in a sample of one of the little pimples to see if there's any infection/anything weird.
That's the good part....the not so good part is that this week has been full of appointments with docs and finding out the "next steps". Whenever you find something you generally follow up with some treatment...they have 3 options and so far only 1 seems decent. The only problem is that the option I want is not the FDA approved standard treatment so insurance may not cover it. We have a few ways to try and get it paid for...so that may be a PITA but we can try. The trial I was trying to get into actually turned into a not so good option. Whenever "death" and "permanent" appear as possible side effects multiple times on 1 page it kinda steers me away ;) We'll send out updates as the battle continues...
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I went for a little jaunt yesterday and I can feel the fatigue kicking in. I was dosing off 3 times on my ride and had to to grab some gum to stay awake. Actually coming back over Stevens Pass we hit a part of the mountain that lost like 20 degrees so I opened my face shield and woke up instantly ;) Anyway...my bitterness has lessened because there's a compassionate trial that I'm trying to get into. It's some new antibodies that pump up the immune system and supposedly has good results against Melanoma. My oncologist recommended it...so my fingers are crossed we'll get in on a trial that just opened up here locally. It's basically an infusion and then 3 weeks off for 3 months and then it's every 6 weeks up to a year I think and the side effects are very minimal. We're getting the nitty gritty tomorrow so I'll know more then. The kicker is that I need to start this trial so my infusion is the week after or when I get back from Laguna. We have to figure that out as well...gotta keep the priorities in check right ;)
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So today wqe met with my oncologist and I'm now a nervous wreck. I've been a mess all day...so Jen and I have been at each others throats. I found out all my "options" even though they all suck...and don't really have an options, just choices. You never know which choice is the correct one either...just that you have to make a choice and live with your decision. The cold hard fact is that in 2-3 weeks I'm gonna feel like crap for 3 to 6 months unless I get on a trial that my oncologist tossed my way. The only problem is that I probably don't qualify because I don't have any evidence of desease. See that's the pisser of this whole joke they call treatment. If you have desease they can help you..because they can see if they're treatment works (or not). Meanwhile you have a tumor growing and possibly cells breaking off or hopefully dying in your body. So generally if you have known desease they want it out ASAP...so they cut it out...then you're disease free. So realistically you have to be in bad sitution that they can't cut it out to get onto a trial or get some good, new meds.
Wouldn't that news just make anyone's day ???? I also told Jen that I don't want to suffer anymore for the long haul...no more permanent side effects or medically induced permanent ailments. Since I'm dealing with daily...actually hourly, and every minute of the day with shit that is from the radiation or drugs I've taken this is now a major part in my decision process. I really don't care about being around if I'm all fucked up...if I'm a mess and all screwed up...that's not living. So....I'm sorry to drop the bomb and I feel like shit that I'm making jen cry and her life hard and for the kids...but...you really gotta look at everything and take a stand. I am sick of suffering....but I have to suffer for my family (immediate and extended), myself, and the rest of the world I guess. I can honestly say that I'm still around because of my wife...then my kids, then my riding.....then the rest. It really sucks to have to even think about this crap at 35 years old...but I had to think about it at 30 so it's not that foreign. I REALLY need to go on a lllllllllloooooooooooooooooooonnnnnnnnnnnnnnnnnnnngggggggggggggggggggggg fricken ride....which I'm doing on Sunday.
Well I'll post up any other updates....back to work...
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YES !!!! Today is the last day of steroids and I can actually see an improvement in this annoying rash and my sleep is improving. I started up the Salagan again because I just can't stand the dry mouth. It's REALLY getting annoying...so that's improving as well.
So that's the good news....otherwise I'm meeting with my oncologist tomorrow so I'll know what the next step is. Basically in the next 2-3 weeks I'll be doing some ajuvant treatment. Both suck...one sucks less than the other but I guess the nice thing is I'll be taking some time off work ;) I just worked all fricken weekend because we have a big deadline this week so I'm definitely ready for some time off.
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Well the next step is upon us and and the stress fractures are showing.
Tuesday we meet with our long time Oncologist Dr. Lonergan and then the following week we have the follow up MRI and appointment with the "World Famous" Oncologist at UW. So by the end of the first week in May we will know what our future will hold for us. I must say it is daunting at the minimum. However, I must say, I am sure I am repeating myself but a fire to do something to educate to help everyone understand. I have never been medically minded or raised to jump to the doctors at first inclination if sickness. Now, things have changed my fear, and anxiety have brought me to almost hypochondriac proportions. So, with that I am speaking at our PTA meeting this Tuesday night about Melanoma facts and the Safe From The Sun event with Melanoma International. Also the school has a carnival every year in May and I will be having a Melanoma facts booth with info about the event and if they want to donate where to go.
Anyhow here is a poem I wrote today....
THE FACTS
Playing in the park
used to be so innocent--
going swimming,
any outdoor fun.
Now it's all muddled and marred with the facts.
Oh the facts...
How they haunt me day and night even in my dreams.
This race we are in,
Really, only one option--
1st place.
Survival at what cost?
Winning at any cost?
The twists and turns on this track have been ferocious.
Melting away, stripping away...
revealing the wear bars.
How many more laps do we have to ride?
I want to win I want to finish this ride!
I will not give up until we've won.
I 'm tired and I do want it to end--
My way on Our terms!
Written at Cottage Lake park with three children and 2 dogs 4/27/08 11:00 am
Jennifer Daneman
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Wow!!! is all I can say!!!
Tuesday I spoke with the President and Founder of Melanoma International, and found out about the fundraiser that I had posted. I created Team Drainfade and I have started raising money for this cause so near and dear to my heart. Yesterday, I found out more about Leukine/GM-CSF and that it could really be something can help Allie's fight. I had posted on the Forum on Melanoma International asking whether is went through the blood brain barrier, I was told GM-CSF is
unlikely to penetrate into the brain well. But, that may not matter.
For drugs like GM-CSF, which activate elements of the immune system,
the drug itself does not need to get into the brain. Immune cells that
are capable of killing melanoma cells can get into the brain tissue
without difficulty.This came from Keith Flaherty, M.D. Assistant Professor of Medicine Melanoma Oncologist Ambramson Cancer Center of the University of Pennsylvania.
Very exciting stuff, but then this morning, The National Director of Melanoma International, contacted me and said that she and the founder were talking about Allie and they wanted my permission to give him the Courage Award at the event(June 1st scavenger hunt) to recognize the difficult journey that he has been walking. I said yes what an honor and that Allie was one of the bravest men I knew. So on June 1st he will be presented with an award!!!!
I just wanted to share this with all of you!!!
Hugs
Jen
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So I've posted about this really annoying rash that's on my upper chest and back and the hits just keep coming. I stopped the Salagan and they're still there. I've been popping Benadryl like candy and it improves and then seems to come back. Now the next culprit could be the Dex (steroid) and luckily I'm on the last 5 days of weening off it. I can't stop it though...so the resident said pop Bendryl and call him on Monday with an update. Ok.,..I can live with that...now here's the kicker. This morning on the local news they have this "what's ailing you" segment of local sicknesses going around as reported by local docs. Supposedly in Woodinville people are reporting a red bumpy rash and they think it's from a cold going around or some pollen in the area. ARRRRRGGGGGHHHHHH..now I'm pulling my hair out on what's the root cause. I think I'm gonna wait until Monday and possibly start up the Salagan again...unbelievable....
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Below is a link to donate money for Melanoma research. Also if you live local you can participate in a fun day and learn about melanoma and again donate money to research.
If you want to register for this event Please go to http://melanomaintl.org/default.asp
http://www.active.com/donate/STFS_Seattle2008/JDANEMA
Team Drain Fade
Safe from the Sun Urban Scavenger Hunt
6-1-2008
PLEASE NOTE: Pre-registration is required for this event and will close on May, 10, 2008. We will not be able to accommodate day-of registrations.
Event Location:
Exhibition Hall, Seattle Center
Seattle, Washington
Registration Begins at 12:00pm
Cost: $35/adults; $10/children
The
Melanoma International Foundation is excited to present our first-ever
Safe from the Sun Urban Scavenger Hunt. Co-sponsored by The Go Game,
this scavenger hunt is an all-out urban adventure game – a
technology-fueled, reality-based experience that encourages active play
and a keen eye for the weird, the beautiful, or the faintly
out-of-the-ordinary. The rule book is “reality,” the “board” is your
city, and the “pieces” are the players – you and your team.
Through
clues downloaded to a wireless device and hints planted in unlikely
places, you’ll be guided through a city you only think you’re familiar
with. Clues can appear at anytime, anywhere. Perhaps you didn’t notice
the woman reading her magazine upside down, or the note stuck to the
side of the bathroom mirror, or the electric scooter parked with your
name on it. After this game, you will! For more information, visit www.thegogame.com.
This
exciting event will also include a comprehensive Health & Wellness
Expo and Skin Cancer Screening by local dermatologists.
This is a family-friendly game for people with any level of technological skill, or none at all. The entire event will take place within Seattle Center.
Do you have special needs? Contact Lisa at lisa@melanomaintl.org. We have many ways to accommodate those with special needs at this event.
Due to the nature of this event, teams should consist of 5-7 people (not including young children). If you register as an individual, we will gladly place you on a team.
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I started the Salagan back up yesterday...Jen said she thought the rash was worse and I finally looked up common allergic reactions. Rash, eye pain (my right eye has been feeling weird), and headache (been getting slight headaches that I thought could be allergy stuff that sinus related). Crap...this stuff was good besides the sweating...oh well. Gotta call my dentist and let them know...gonna try and pop sugar free mints and gum to get my salivary glands going until I can get an alternative. This blows...I don't think there are many alternatives.. They offer sprays and some other lame options...we'll see what happens.
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If you live in the Great Northwet this weekend was crazy. We had snow on and off all weekend, hail, sun, rain, thunder, and lightning. The chickens haven't been laying worth crap either (love them fresh eggs).
On the health front, I finally came to my senses that I was having some allergic reaction to one of these new drugs they have me on (Jen thought I was having an issue but I'm too stupid to listen). Anyway...I think I had an issue with the anitbiotic I was on for that mouth sore thing we found but I stopped the Salagan as well. The Salagan is what my dentist gave me for dry mouth (from the radiation I had 2 years ago). I popped a few Benadryl and wholla..the little red zit things started going away, they're not 100% gone but definately on their way out. I can't believe how much of a difference the Salagan made though...my mouth dried up again. I started taking it again...gonna see what happens, maybe I'll just cut back from 3x a day to 2...we'll see what happens. I REALLY hope I'm not allergic to it...this stuff is good and without saliva a ton of crap goes wrong in your mouth.
So I opened my mouth a few wweks ago and said I wanted to do Passover...the significance of the holiday kinda hit home this year so I thought I'd motivate ;) Anyway in classic Allie fashion my mom emailed me a Happy Passover email and I was like "woops, I forgot...oh well". Well in classic Jen fashion she motivated and went shopping to prep for Passover. She got the whole spread, cooked up a pot of Matzah Ball soup and we had the yamika's and haggadah's out for Sunday dinner. We forced the kids to try everything and we did it as well as we could...and I'm glad we did. My wife kicks ass....and thanks to her we did it.
Alright...back to work...
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I just got a call from the Elementary School The Twins got into FULL DAY KINDERGARTEN for FALL 2008!!!!!!
Yes !!!!!
Thank you Thank you Thank you!!!!!!
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Hey folks....
I have checked out for awhile because life has been crazy. So I will catch you all up from my perspective.
First, the pets: Mallary our Shepard Mix, had surgery, and the tumor came back as stage 2 Mast cell tumor. They did margins and said we have to keep a close watch on her for any reoccurrence.
We had excitement Tuesday morning when she started leaking blood and fluid from her incision and we rushed her to the vet. they said it looked worse than it was. They put her on antibiotics and they have kept her there until the oozing stops. Her incision has opened about and inch and they think they will have to re-stitch it.
Katya the Cat, She has kidney disease and her thyroid is enlarged yet her counts are not high enough for meds. Due to her kidney disease, she can't do surgery or radiation. Allie and I would not put her through radiation anyway because we know what it is like for a human and she can't tell us if she is in pain or discomfort.
I have to say the last 2 weeks have been hard because, my parents have been in Ca dealing with other family issues. Allie and I are stressed beyond belief even though we are medicated I can tell it is affecting the kids. I feel as though they are being robbed of a true childhood and parents because Allie and I are dealing with such a complicated, stressful, life or death thing.
I have made a consicous choice to try and fulfill Allie's dreams as well as ours together as a couple and a family. I have also made a choice (Thank you Laurie) to try and educate people about Melanoma and find a way to do fundraising for it. I have sent our story to Oprah, Good Morning America, and The Today Show. My fingers are crossed!
People do not realize that Melanoma affects every ethnicity and gender, you do not need to inherit some gene. All it takes is UV exposure with out sunscreen and not going to the dermatologist on a regular basis. If you catch it early you are safe, if you don't you place your life in the hands of destiny, the doctors/naturalpaths, and fate.
Each day we have in this conscious existance is a gift. Whether is with your soulmate or your children or both. or perhaps even traveling to every destination on this planet. Seize it! Don't waste a single minute, don't put your life on hold!
So Allie will be going to Laguna Secca Hell or High water, He is going to the Iron maiden Concert, he is going to that superbike camp and anything else that brings a smile to his heart and face.
Thank you all for your continued love and support.....
Hey you Omega Phi bro's thanks for stepping up because it so much to him to know the brotherhood is exactly that, a Brotherhood!!!
P.S. Good News!! I sold 2 paintings yesterday!!!
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Ok I'm officially exhausted. I haven't slept the entire night in 2 weeks (I keep waking up over and over) due to these stupid steroids. I ramp down more tomorrow but I'm really starting to feel it. I actually felt great last night after my exercise class (thanks go out to Lisa for that) but now I'm sore so that's probably addding to the lack of sleep :(. Anyway....we gotta get this ironed out...time to start calling fricken doctors.
On a nother note...my bro bought a bike so we've been talking more and more about his new 2nd girlfriend (my motorcycle is my 2nd girlfriend) and he's gonna hook me up with a weekend at California Superbike School this September. We're gonna do camp together...it's at Willows Springs down in LA and we use their bikes,leathers,etc. I'm actually kinda in shock because it's pretty expensive but he wants to pay for it (I will pay you back !!!!!) Anyway....this is Keith Codes school so even though it's on a track we should learn a ton to help us out on ths street. It's nice to have some good news too ;) TTYL.
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Just an FYI to all those people I'm playing phone tag with....the absolute fastest way to get a hold of me during the work week is via personal email. I'm logged in all day and can get back to you in hours if not minutes as long as I'm not swamped. Now not being swamped in the lab is rare....but I can fire emails out quick ;)
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Well it's been a nice relaxing week but it's time to get back to the daily grind. Still weening off the steriods and all is well..by the grace of god the headaches have stayed away. Still have a few more weeks off until the next step, I'll keep updating as we go.
On a side note, I think I've been talking too much this week though...my mouth has been real dry for the past few days (from the radiation I had over 2 years ago). I've had this cough since last October..found out that my right vocal cord is paralyzed and could be from the radiation treatment over 2 fricken years ago. I had a colagan treatment to the vocal cord to hopefully help it come back..it's helped a bit but still an issue. Anyway, I went to the dentist because I thought I hurt my right rear molar (jaw aching and felt like there was a flap of skin there). The dentist said I have like a wart back there, gotta go back in 10 days and see if it's gotten better/worse, if it hasn't improved gonna have to get it cut out. The other thing that he said was that my right salivary glands aren't really working..like at all. He thought they're either clogged or from the radiation...great... So he recommended Salagan which is a drug that increases saliva production..I tried it when I was going through radiation and wasn't really impressed..but I'm so dry I'll try anything. The only side effect is I sweat like crazy...just kinda clammy all the time which may not be so bad as the temps go up ;) Supposedly after a month of it your body gets used to it and you don't sweat as much..it's actually working pretty darn well. I;m not as dry as I was on the right side...so that's a big positive. He's also putting me on flouride tubs and prescription flouride toothpaste. Because of the radiation treatment on that side if I have to get a tooth pulled it could be real bad because it may not heal...which is REAL bad for infections. So...I actually had a GREAT dentist visit which is rare ;) TTYL.
P.S. Continued thanks to everyone's prayers, thoughts, and goodwill. I also want to thank all the calls and well wishes from my bros..it really means a lot to hear from so many of you in such a long time. Cogito Signum.
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We just wanted to say thank you to several people!
Heidi and Tim, The Fodge's, The Curry's, The Turner's, The Joo's, The Parent Family, and the Jordan Family. In the last two weeks they dropped off food, took care of kid's and sent certificates for food to be sent to us.
Thank you for helping us in our time of need!
For all others thank you for just loving us and wishing us well and everyone for sending good vibes, prayers, and good energy!
A special thanks to my parents for driving back from California to help with the kids last week!
Huge hugs and kisses to you all!
Love,
Jen, Allie, Ben, Jessica, and Toby
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You curious what the Gamma Knife looked like ;) Check these
http://www.daneman.net/gallery/main.php?g2_itemId=3428
Jen hates these pics but I wanted to post them for posterity. Besides...I look like a bad ass with a frame bolted to my head :)
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So today is the last day I'm on steroids 3X a day to control inflammation...so tomorrow will a the turning point. My fingers are crossed that nothing will change...I'm off narcotics and not having to even take Tylenol for the past 2 days. I'm also looking forward to getting weened off steroids to sleep. I haven't had an uninterrupted night of sleep since last Wednesday night. I'm on some sleeping pills now and doing some other things to help my sleep. Otherwise all is well ;) I think the lack of sleep is what's really pooping me out right now. My energy is back to about 70% and I'm starting to get a bit more active. My naturapathic doc said get back to exercising ASAP..so I may hit my exercise class this Thursday as long as all goes well in the next 2 days.
P.S. I really want to express my sincere thanks for everyone's help this week with the kids, food, and general help. It's really helping us out...
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Back on Friday I had spoken with our longtime Oncologist when we were on the phone he began dictating a letter to all the doctors involved in Allie's care, he said this will go out on Monday. The letter included our Naturalpathic Oncologists, Radiation Oncologist, Neurosurgeon, and the new "World Famous" Oncologist we had been assigned to at UW, he ask what are their thoughts on adjuvant treatment because he recommended Temodar (oral form of DTIC Chemo drug) which penatrats the blood brain barrier. Not much can penatrate that barrier. Now according to the Dr. it is more easily tolerated and it targets specific cells.
Today we set off bright and early for an 8:30 am visit to the Naturalpathic Oncologists in Seattle. Now he had not gotten the letter yet but he recommended the same treatment along with a new regiment of suppliments. He also told us about a few other things though, GMCSF is a white blood cell booster and when you do Chemo you are given something like this when your counts get low. Allie did GCSF before but the GMCSF is better for melanoma patients and boostes your white cells to better fight against Melanoma. We also found out about another thing called IVIG that I have to do research on but it is another ace in our pocket.
So right now we have to wait about 3-4 weeks for the brain to heal from the Gamma Knife then he will start the adjuvant treatment. He will continue on the Iscador(Mistletoe) because it helps raditation and Chemo and the immune system do their jobs.
Thank you For the gifts in food and food delivery services, and the continued support from all our friends and family.
I wanted to Share another poem with you all. I wrote this 5/29/01 Ben was nearly 6 months old when I wrote this. (My mom might edit it :) kisses hugs mom )
My Inspiration arrived the day I met you.
It came in such a flash, I did not expect you, I did not expect to be inspired.
You affected me in such a way I almost forgot to breathe.
It was as if some divine guide had brought you.
Now seven years later, I am still inspired. I realize that my love for you
only grows as the days pass. The day ou son was born, the wayyour
support and lovenever faltered, you inspired me. The way you work so hard
and take care of us, makes me love you even more.
Sometimes it affects so much I almost forget to breathe.
Everyday I look into our son's eyes and I know he exist because we inspire
each other in ways that words can not describe.
You are my love, my friend,
You are my inspiration and you affect me so much sometimes,
I almost forget to breathe
Written for Allie 5/29/01
By Jennifer P. Daneman
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So I'm just 2 days out of it and just healing. They pumped me up with a ton of lidocaine so it's going all over the place in my head (eye is a bit puffy) and draining. I'm still kinda drained..and will be for a few days. Sleep is an issue, I'm on a steroid to keep any swelling down but the side effects are bad sleep and I'm sweating like a pig at night. Otherwise I'm having very mild headaches that are taken care of with Tylenol...so no more narcotics yet, fingers are crossed it'll stay this way. All in all I'm doing pretty well...just gotta stay still and do light things around the house, I'm already bored...
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Well, I am tired even though I am not the one that was radiated. The additional tumor was a shocker but.... when the Dr. walked in to discuss the MRI I could see it written all over his face.
I asked him in the scheme of things what does this mean to us. He said I am going to be blunt, and frankly it was so refreshing because as Allie said he cuts out the grey areas and just leaves the facts. He said, there is no cure for Melanoma and that we are going to be constantly chasing it because there just is no silver bullet. Adjuvant treatment can put out fires and postpone things and perhaps give him some longevity. Other than the cancer he has his good health and age going for him and hope that they can come up with something that can kill melanoma at a cellular level or get the immune system to fight it and kill it but there has to be some kind of immune booster that can do that or be more focused and there is not one yet. So I have put a call into both our Oncologist and Naturalpath and asked them to work together and make a cohesive plan that will do the trick till they do come up with the silver bullet.
Ok so today in the Gamma Knife ward was this little poem it is not mine but it struck a cord
perhaps strength
doesn't reside in having
never been broken
.... but in the courage
required to grow strong
in the broken places
Thank you for those who left sweet gifts on our porch and words of support and love in the cards today, they brought a tear.
hugs
Jen
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Everything went smoothly...they found another tumor and zapped it, so although unexpected and not good news it could have been worse. The next 48 hours are critical, there is a possibility of seizure so I have to be watched constantly. Otherwise I'm gonna have some headaches and heal up the 4 holes in my head. So basically radiation takes awhile to take affect, in the next couple weeks some fatigue may set in and it could get worse for the next month or 2. Since I've gone through radiation before I kinda know what to expect but you never know until it happens. Since we found more tumors I'm gonna have to do more treatment...probably some type of chemo, fingers are crossed I'll tolerate it well and remain fully functional. Thanks for everyone's generosity, prayers, and well wishes....we appreciate every bit of it. I'll be taking it easy for the next week recovering...ttyl.
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We Just spoke to the Doctor about the MRI findings and they found one more small tumor on the left temporal lobe and they will zap that one too! So adjuvant treatment will be a must. He is currently listening to Iron maiden while they are Zapping his brain.
I will leave more info later.
Jen
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Well, Allie commented that I was a mess and yes in fact I can confirm I have been an emotional mess the last 3 days. We have 2 dogs Mallary who is 9 years old shepherd mix and a 7 year old lab Shelby. We also have 3 cats that we have had since college that are 13 years old Katya, Olivia, and Scrappy all girls. Well, Mallary, has to have surgery next week because she has a Mast cell tumor on her leg which could be malignant, Katya our 13 year old cat the one one we got with in the first 6 months of dating, has kidney disease ad her last remaining thyroid may have cancer in it as well. On top of all Allie's stuff a breaking point is near......
Tomorrow we have to be at Harbor View Hospital at 6:30 am, between the pets and Allie I am a wreck .... We hope that miracles happen tomorrow and I plan to call Our Natural path and long tine Oncologist and hope together they can put a plan together that will save Allie's Life.
In the mean time Allie plans to have individual dates with each child and hopes to create a bond and tangible love that is lasting and unforgetable.
We hope for the best tomorrow..... and we hope for a long future together as a family and with our friends.
Any Alumni of Omega Phi Alpha start a face book group for Alumni bros and little sisters will ya..... Lets get a reunion going on !!!! Some of our happiest days are with the blue and gold bull dogs and having you all together would sure lift the spirits!!!!
I wrote a poem today in the middle of red robin with the twins and ....Gen said really ? How in the noise and chaos, but it happened here it is......
The Hustle and Bustle
People walking and talking
not knowing, not caring what there fellow beings
might be suffering, celebrating, crying, rejoicing, dying,
cracking apart, falling a part.
How many pieces do people walk on by, talk on by?
How many pieces am I falling apart into ?
1, 10, 100,1 million?
I am sick of hurting, crying, feeling like I am losing the battle.
My Coven has stood up
locked their arms around me,
yet some how
I still feel isolated in my sorrow in my battle.
But, knowing those arms are there to catch me when I fall
its so precious and safe.
By,
Jennifer P. Daneman 4/2/08
Adios and muchos beso for now( good bye and lots of kisses )
Jen
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So yesterday we're enjoying a decent lunch at UW of all places and my Oncolologist calls for an update. We give him the lowdown and he drops the chemo bomb. Well like an idiot I say "no" out of the gate to Jen and she turns into a mess. I'm open to whatever comes my way....but I'm really doing some cost/benefit analysis these days. I'm getting sick of suffering and the numbers for these brutal treatments are so crappy they don't look so good. I REALLY WANT THIS ALL TO END...and I think Passover has a bit more significance this year so we'll make sure and celebrate it ;) Anyway....the docs all suck and always drop these bombs that piss me off...ttyl.
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Well today started at 5am for Allie he woke up with severe head pain nausea
and vomiting....we tried to get him comfortable at home but nothing we
did seemed to help. So we called the Radiation Oncologist on-call and
they prescribed 3 things only trouble was all the pharmacies did not
open till 9am. So by 11am Allie was not better and they wanted me to
bring him to UW, where he got CT's of his head and neck. The tumor has
not grown and nothing popped out to them on the neck ct. They they gave
him pain and nausea meds and got him under control. By 5pm we were home
but what a day.
I have to say at least I got my first drum lesson in this morning while
waiting for prescriptions to be filled so that was good. Allie and the
kids are being baby sat by my brother tonight so I can blow off a
little steam.
I think on Monday we can get some headway on his throat stuff I got an
appointment from Wednesday to Monday. Allie is worried about coughing
during the Gamma knife and I do not blame him so we are going to try
and get that delt with before Thursday.
Have a good weekend we'll keep you posted!!
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Ok So here is the nitty gritty on the gamma knife.....
So the purpose is to get very intense radiation to a specific area. The way to really visualize this is have 50 guys at night point their flash lights around the same tree stump.
The Procedure will take place next Thursday April 2nd. They told us to expect to spend the entire day there at Harbor View Hospital.
They will begin by numbing up the the places in the head where the screws of the Halo/frame will attach to Allie's Head. The Screws will go threw the skin to the skull, Allie will be awake for all of this however they did say the could give him something for anxiety.
After the Halo is placed there are 4 things that are possible to occur going from most likely to least likely but rarely possible.
1. Bleeding at screw sites
2. Infection
3. Scaring
4. Cracking or pentitration of the skull which would result in emergency surgery. This has never happened in the US.
Next they will do an MRI with extremely thin slices (w/ fram/halo on) and examine the brain for any other tumors before they actually do the procedure. If there are any other tumors they will not go forward with the Gamma knife.
The MRI also helps them get their the exact target within a human hair. The Gamma knife table looks like a CT machine, however, the frame/halo locks into a helmet and the procede with the radiation. It can last from 1 hour to many, Cancer is unpredictable.
He can expect a head ache from the helmet, frame/halo. The first 48 hours after are most critical because there is a risk of seizers but they feel Allie most likely wont have one.
Fatigue may occur within 2-4 weeks or months after the procedure.
The one thing we really have to keep a watch on is if he has any swelling of the tumor. If there is they can try and manage it with steroids. If that does not do the trick then he may have to have surgery.
Ok not to be morbid but just factual I just want to give the definition of
Metastatic Melanoma:
This is when a piece of tumor breaks off and circulates in the body and there are 3 ways it can do that
1. direct growth and branching out
2. lymphatic system
3. it have gotten to the blood stream
There is only one way that cancer can move to the brain and that is through the blood.
Ok I am spent and spent and my brain is like swiss cheese. Writing everything down is crucial for me right now. If I don't make sense or I am repeating myself sorry......the cracks are now showing.
Thanks again everyone for kind words and help and support!!!
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Happily the fun doesn't begin until next Thursday, tomorrow was just too soon. So in a nutshell they're gonna screw a halo to my head, take an MRI, and then start radiating my brain from 201 directions. Sound interesting ? It should be..and the best news of all is that my downtime will only be a few days. I'm gonna take a week off to be on the safe side and hope to be back to my regularly scheduled activities at the end of the week. I'm a tad scared of the fact that I may need surgery in the next few months if they fry this thing too well...so my fingers are crossed they take care of business, but not well ;) Anyway...thanks for everyone's kind words and support, we greatly appreciate it. TTYL.
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We started the day with the Neurosurgeon Resident with a Russian
accent. He was really nice and of course when ever we meet with anyone
new we have to detail the last five yrs of Allie's fight with Melanoma.
When done with that we gave him Allie's current symptoms of headaches,
eye pressure, hiccups, slurring words, etc.
Then the New
Oncologist came in and he was really nice and seemed to be very
sensitive to our situation but again we had to give the detailed
account of the past 5 years. Dr. Chamberlin advised that the Gamma
Knife was the best way to go because either way Allie has to have
radiation. He also informed us that Melanoma really likes the brain
this we did not know before.
Then the Neurosurgeon came in and
again a very nice guy. He said that the Gamma Knife was the best way
because it killed two birds with one stone, it did what surgery would do
with out any cutting and would also radiate the tumor. The side effects
of the gamma knife that we were told were 3 possible things, 1. the
tumor could disappear altogether, 2. The tumor could just shrink, or 3.
the gamma knife could do to good a job and the tumor could become
inflamed and swell and he would need surgery to have it removed.
We
were also told that we could have this done as soon as Thursday but
first we have to meet with the Radiation Oncologist on Wednesday. Allie
is on a list which he is 1 of 4 and it all goes by priority. So we will
find that all out Wednesday whether he goes this Thursday or next for
the Gamma knife.
I just wanted to add that I think the reason
why Allie has survived this long is because he is such a unrelenting
opponent! His spirit and fire and determination and his unfettered
positive attitude kept the enemy at bay. The fact that it took the
enemy 5 years to get to his brain is a good sign I think.
Allie is
my Hero! He is dedicated to our family and has worked through this
tremendous battle, with such bravery, courage, and strength!
To our family and friends we love you thank you for supporting us through this tough time, you make this bearable!
Lots of hugs! |
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Got to stretch the legs a bit and go for a little ride with some buddies, some I'll be riding to Laguna with and 1 new guy. We ripped around the valley on a gorgeous Northwest day with snow on the mountains around us and nice early spring colors starting to show. I'll know what's going on in the near future on Monday, whether it's surgery, radiation, or a combo of both. Supposedly the Neurosurgeon is a 6'4" 300 pounder and has a great sense of humor. For some reason I feel completely cool with whatever happens, UW has taken care of me in the past so I'm not too scared...although a hole saw to my forehead doesn't really bring up a great picture. I think I'm more worried about how much time I'll have to take off work and how long recovery is. I don't want this to infringe on my riding season at all...especially my trip to Laguna. Nobody should worry about me making the right decision...I'll make the best decision for me and that's all that really matters. One thing I have realized is that melanoma doesn't care what you throw at it..it does whatever it damn well pleases with a big FU to the human body. I have a feeling this will be the end of it though...I don't know why but I have a feeling that it's over after this. I was just getting used to a "normal" life again...it'll be back in no time. It's kinda hard to call our life normal but when you have to think about this crap and deal with long lasting side effects of treatment normal isn't always the case. I think I'm gonna have to break the news to my coworkers...atleast when I go out sick for however long I need to go out...and my riding buddies. The 2 main ones already know...but I'll let the other know as well once I know what will happen. TTYL.
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Today we went to a Throat Specialist and they put a scope down Allie's nose and throat and found out that his Right Vocal Cord is not working. This is due to the radiation he had 2 years ago. They have throat exercises and some other non-invasive things they can do for him and they plan to do a special throat xray to help nail down their treatment plan.
This of course is not our highest priority but Allie has had this cough since October 10/07 and the hoarseness in his voice is almost constant. He also has a bit of trouble swallowing from this as well and he just wants this fixed.
Also The Neurosurgeon has decided to bring in an oncologist who will be at our appointment on Monday.
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Good news the CAT scans are clear so the only thing we have to worry about is Allie's brain.
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As of March 17th Allie was found to have a 6-7 mm tumor in his right temporal lobe.
Allie has his Appointment with the Neurosurgeon on Monday the 24th. We also had his CT scans moved up to wed the 19th so we are hoping to get those results with in the next day or so. After meeting with Neurosurgeon there will be a decision as to which option is going to be the best path for Allie, Surgery or Gamma knife, nothing has been decided yet.
Below is a link that explains all about the gamma knife. For those who were wondering and wanted more info.
http://www.irsa.org/gamma_knife.html
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