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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 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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