Every time cancer has slipped into my life I've battled a short period of depression then picked myself back up, done what I needed to do and moved on. This time I've sunk into a depression I can't seem to find my way out of. I can hardly care for the kids. My mom, Jake's mom and Jake have been so supportive and understanding I don't know what I would do without them. They let me cry, complain and stay awake with me at night when the demons come out and don't let me sleep.
The countless narcotics allowed me to escape for months, but now I'm on my own and I'm struggling. If you called, thank you. I'm sorry I haven't called back. When I'm like this the only way I can cope is to withdrawal. I'll surface with this is all behind me. I hope it's soon.
Sunday, August 31, 2008
Thursday, August 28, 2008
Hope at Home!!!
After over a week, our Hope is home! We now have Hope again starting each new day and although our Hope is reduced having lost probably over 30 pounds with clothes dripping off her skinny ass (sorry grandmama) the Wise Boys are happy to have Hope again. We never gave up Hope and never will, but it's been a long 8 days with Hope not at home so she could be at her Mom's to concentrate on nothing but getting better and getting past the worst of the detox. What she went through over the last 2 weeks was worse then any chemo and radiation combo you can imagine, but although weak and weary she's past the worst of it (we Hope and yes pun intended). As I type I'm listening to the greatest rock band ever, the Counting Crows, and if you're not a fan just listen indulge yourself into August and Everything After. That's us now, August is almost over and we're ready to enjoy everything after. And to quote our experience since June from another Counting Crows song on another album, Long December:
The smell of hospitals in winter
And the feeling that its all a lot of oysters, but no pearls
All at once you look across a crowded room
To see the way that light attaches to a girl.
The light is shining on our pearl and even if she turns sideways and we can't find her, we're willing to wait out until she turns again and we can find her. Any group with a song named Colorblind is my kind of band. It doesn't hurt that the lead singer has knocked off half of my list (2/5ths from the Friends cast alone). One more lesser known song from the Counting Crows is "I'm not Sleeping" and it describes how I felt when Hope was gone and now that she's back:
She comes to me at night when I'm sleeping
She comes to me when I'm alone
She comes to me, she holds my head when I'm crying
She comes to me, she shuts my eyes
She brings me home
But I'm not sleeping anymore, anymore
Hope is tucking in the boys as I type, and I feel like Zach in Saved by the Bell the College Years when he had to go the first half of the first season without Kelly Kapowski, and then Tiffani Amber-Thiesen returned and all was right in the world. Even Screech had a guest appearance by Lisa, so for an episode the nerd got his girl back (alright that is much more like me because Zach is way too cool for me to pull of Tiffani). I'm more like Elaine dancing in Seinfeld then Sam Malone working the mother-daughter combo only to find out it's Rebecaa's Mom and sister.
We have a long way to go for recovery, right now walking to the mailbox is too much and it takes pills or feedings every 30 minutes during the waking hours of the day including over 40 pills per day to fight the good fight. We are up for it, having trained like Rick Moranis and Dave Thomas (Bob and Doug McKenzie) for their jobs at the brewery their entire adult lives including mind controlling hockey in what has to be the greatest drunk movie of all time. To this day I still hum, dummm-dumdumdum-dah-dum-dum-dum all the time to the kids. That means in the mind control of black and white hockey, it's on! Any movie with a drunk flying dog that looks like my old Shadow and a bit like my old Cody when he smiled (yes our old dog Cody smiled and Hope will back me up on that one) has to be an instant classic.
I'm no longer playing a single dad, although the role was entertaining and I loved every minute of it. Reese unfortunately started to pee in his bed at night again after Hope left so I was daily washing his sheets and comforter. The first day I did it I washed the comforter first and while I was cleaning up their rooms upstairs they came running up to me saying "earthquake daddy." The washing machine was off balance moving across the room so I had to pull out a sopping wet comforter dripping all over me and the floor to try and rebalance it. I've been more dry after doing a cannonball in the pool before.
Reese just came downstairs which is a rare occurence unless it's 3 AM and he just peed the bed, and he told me had to tell me something. So I asked what is it sweetie, and he said, "remember on SpongeBob when he had too many night lights?"
"Yes I do, and then Patrick broke through his wall also scared," I responded. Reese smiled and said, "yes Daddy." There's nothing better then my own future blogger coming down in the middle of the night to quote a SpongeBob reference as I'm blogging about the same. Reese has now added "got a little captain in you?" as he lifts his leg up along with his response to what's the first rule of Fight Club, "don't talk about Fight Club." We're still working on, "can I borrow your towel, my car just hit a water buffalo" from Fletch.
That night I had to hit the grocery store so I asked the boys to pick together any dinner they wanted and they picked hot dogs and Doritos. It was late by the time I got back so I didn't have time to fire up the grill like I normally do, so I thought I'd microwave the dogs for the first time in years. Hope likes us to get nitrate free fearless franks and they're too long for regular buns so when I microwaved them the ends exploded. Then I put them in the short buns with blown out ends and a stack of Doritos for a vegetable. The next morning the kids helped me crack eggs for scrambled eggs. Well I did the daddy surprise with some cheese in them and when Reese saw them he screamed, "I don't like cheese in my eggs!!!" So colorblind boy spent the next 20 minutes trying to separate the dark yellow from the light yellow. As I always say when Hope makes a casserole, with enough hot sauce I can eat anything. I think that's why I like Mexican so much and the scrambled eggs the boys helped me make.
Another night I bought some fresh pizza dough, rolled it out and let the boys do the toppings. They put on spaghetti sauce, cheese, pepperoni, and then had me cut up hot dogs too for the toppings. Finally I had to draw the line at gummy worms. We still had some left over from Mother's Day/Papa's birthday when the boys and I made Dennis, Mom, Hope & Hope's mom chocolate cake with chocolate icing and then decorated the cake with M&M's and gummy worms.
I've had quite a few phone calls, friends calling other friends, and e-mails asking for updates on Hope. My mommy always told me if you didn't have something nice to say then don't say anything so the updated blogs have been as scarce as the identity of what was in the briefcase in Pulp Fiction that lead to John Travolta accidentally spraying brains all over his getaway car after they hit a bump. Which by the way was taken care of by the cleaner, played by Harvey Keitel, who has nothing on Hope when she sees a carpet without proper vacuuming lines in it.
Michael Phelps has nothing on Hope either, 8 gold medals is nothing compared to what she has overcome in the course of almost two Olympic games. She has crucified the world records in strength, durability, toughness, gumption, and love and support from you guys. Like Kitt in Knight Rider (movie to be coming out soon as previously blogged about from the Hoff fan club president) she's virtually indestructable no matter how big the enemy. Kitt even took on an 18-wheeler made out of the same material three times with the Hoff barely taking on a scratch. Luckily Bonny still had that one swipe of grease across her cheek in her spotless white overalls to keep us watching.
Tonight the Floirda Wise boys have a new Hope on life...
Wednesday, August 20, 2008
Hope
Anyone reading this has two kinds of Hope in their lives. The first that keeps you going every day seeking to be better and enjoy yourself more then the previous day. The second, because you know her and are reading her blog, is my Hope and you just can't help but to love her if you know her at all or have even met her. She fulfills both of those definitions for the three Florida Wise boys, like Tiffani Amber-Thiesen did for me when she moved on from Saved by the Bell to being the bad girl on Beverly Hills 90210. Tiffani gave me Hope in Saved by the Bell and the first girl on my list when Hope and I used to watch in our early college years.
Hope #2 for you guys is going through her toughest battle yet right now after tiring from her previous fight for almost seven years. As she puts it, she is so sick of being sick it makes her more sick. I think I remember the same saying in one of my Cliff Notes from a Shakespeare class (or possibly it was the movie that made me flunk Mrs. Lober's test in 11th grade because it wasn't even close to the original play). Hope's scrapping of western medicine and open arms to holistic healing alone to date has not progressed as Hoped (pun intended), it's been more like Tropical Storm Fay which was a joke 36 hours ago to us with its weak winds but now after dumping over 16 inches of rain in the last 24 hours it's starting to dampen our moods around town along with some houses, cars, and my project sites. It's still pouring outside with high winds so it's been raining on our city's and Hope's parade to more Hope for tomorrow. Through all the hurricanes we never missed three consecutive days of school, and tomorrow is number 3 with Monday of this week being the first day of school.
The first day of school is the annual pilgramage bringing new Hope to all children to see old friends, make new ones, hope for good teachers, wear your cool new kickers squeaking with each intrepid step, and most feeling better and more confident each day of the week as you ease into a new routine. Routine for us has been different then most over the last 7 years, at times much better and higher then most just to be doing the mundane, and at others looking for ways to find more Hope and healing kind of like Thomas Magnum in the all-time best private dick show in the episode he went back and forth to heaven in his final season. We are by no means in our final season, in fact today was the first major step to a new Hope and getting back the old Hope we miss so much like a Dukes of Hazzard cliff hanger. The General Lee as they cut to commercial is about to explode at the bottom of the ravine when Waylon Jennings says something witty and when they cut back from commercial the Dodge Charger is starting the jump all over again like a mulligan when you hit a bad first shot in golf. I was always mad about the cliff hanger fake until the next scene with Daisy Duke (by the way can you name another TV character that has her own type of shorts or other clothing named after her?) as that always seemed to make things better.
Hope's mulligan started this afternoon as we decided it would be best for her to stay at her Mom's for as long as it takes to regain her Hope again and get the old Hope back to the three Wise boys. She needs all of her energy and your positive thoughts and prayers to concentrate on only getting better right now. There will be no scans, doctor appointments, treatments like chemo or radiation as the docs recommended again but we decided against, or prescriptions for Hope anymore as they had taken both Hopes out of our lives for a short period of time. Today is the first day towards getting the old and a new Hope back for all of us and if you're reading this you have an inkling of how much work that will be. We were starting to feel like Sam Malone when he proposed for the third time to Diane Chambers on his boat during the best years of Cheers, and when she said no he just jumped overboard. Now we're feeling like Wilson floating the open sea alone in Cast Away but in the next few days we'll be Superman reversing the spin of the Earth to get back what we loved and had lost for a while. Hope's no Margot Kidder (Lois Lane in Superman II) as she went off the deep end or Tiffan Amber-Thiesen as she snorted her way to anonominity because she'll be back restarting her jump over the ravine.
We're fighting this thing head on with no drugs on our side (or against us pending your view) anymore, just positive mojo and the strongest will to not only survive but revive the daily Hope it takes to make every day better then the last. This is our toughest test to date, we're sick of being sick, and today was the first major step needed to detox from not only the last 7 years but also the last 35 years while weighing in at a paltry 120 pounds and new size 4 body that has her clothes dripping off her but the heart of a champion. Rocky has nothing on Hope on his best day (although somehow becoming faster then Apollo Creed while training on the beach still dumbfounds me), and we need just a little more time to get the new and old Hope back to her boys. I haven't blogged in a long time and even if no one reads this, I'm healing too.
- Just Jake.
Hope #2 for you guys is going through her toughest battle yet right now after tiring from her previous fight for almost seven years. As she puts it, she is so sick of being sick it makes her more sick. I think I remember the same saying in one of my Cliff Notes from a Shakespeare class (or possibly it was the movie that made me flunk Mrs. Lober's test in 11th grade because it wasn't even close to the original play). Hope's scrapping of western medicine and open arms to holistic healing alone to date has not progressed as Hoped (pun intended), it's been more like Tropical Storm Fay which was a joke 36 hours ago to us with its weak winds but now after dumping over 16 inches of rain in the last 24 hours it's starting to dampen our moods around town along with some houses, cars, and my project sites. It's still pouring outside with high winds so it's been raining on our city's and Hope's parade to more Hope for tomorrow. Through all the hurricanes we never missed three consecutive days of school, and tomorrow is number 3 with Monday of this week being the first day of school.
The first day of school is the annual pilgramage bringing new Hope to all children to see old friends, make new ones, hope for good teachers, wear your cool new kickers squeaking with each intrepid step, and most feeling better and more confident each day of the week as you ease into a new routine. Routine for us has been different then most over the last 7 years, at times much better and higher then most just to be doing the mundane, and at others looking for ways to find more Hope and healing kind of like Thomas Magnum in the all-time best private dick show in the episode he went back and forth to heaven in his final season. We are by no means in our final season, in fact today was the first major step to a new Hope and getting back the old Hope we miss so much like a Dukes of Hazzard cliff hanger. The General Lee as they cut to commercial is about to explode at the bottom of the ravine when Waylon Jennings says something witty and when they cut back from commercial the Dodge Charger is starting the jump all over again like a mulligan when you hit a bad first shot in golf. I was always mad about the cliff hanger fake until the next scene with Daisy Duke (by the way can you name another TV character that has her own type of shorts or other clothing named after her?) as that always seemed to make things better.
Hope's mulligan started this afternoon as we decided it would be best for her to stay at her Mom's for as long as it takes to regain her Hope again and get the old Hope back to the three Wise boys. She needs all of her energy and your positive thoughts and prayers to concentrate on only getting better right now. There will be no scans, doctor appointments, treatments like chemo or radiation as the docs recommended again but we decided against, or prescriptions for Hope anymore as they had taken both Hopes out of our lives for a short period of time. Today is the first day towards getting the old and a new Hope back for all of us and if you're reading this you have an inkling of how much work that will be. We were starting to feel like Sam Malone when he proposed for the third time to Diane Chambers on his boat during the best years of Cheers, and when she said no he just jumped overboard. Now we're feeling like Wilson floating the open sea alone in Cast Away but in the next few days we'll be Superman reversing the spin of the Earth to get back what we loved and had lost for a while. Hope's no Margot Kidder (Lois Lane in Superman II) as she went off the deep end or Tiffan Amber-Thiesen as she snorted her way to anonominity because she'll be back restarting her jump over the ravine.
We're fighting this thing head on with no drugs on our side (or against us pending your view) anymore, just positive mojo and the strongest will to not only survive but revive the daily Hope it takes to make every day better then the last. This is our toughest test to date, we're sick of being sick, and today was the first major step needed to detox from not only the last 7 years but also the last 35 years while weighing in at a paltry 120 pounds and new size 4 body that has her clothes dripping off her but the heart of a champion. Rocky has nothing on Hope on his best day (although somehow becoming faster then Apollo Creed while training on the beach still dumbfounds me), and we need just a little more time to get the new and old Hope back to her boys. I haven't blogged in a long time and even if no one reads this, I'm healing too.
- Just Jake.
Monday, August 18, 2008
Wednesday, August 13, 2008
Decision, School and Looking Good
Decision made...no radiation. I guess I knew all along what my decision was I just had to go through the motions of letting the decision settle in. I'm very happy with this choice. I may add a link about some of the "stuff" I'm doing to maintain my health later.
We had "open house" at Nathan's school tonight. Since he is in a combined 1st and 2nd grade class (37 students) there are two teachers and they are so cool. He's going to love the next 2 years!
During registration this morning the guidance counselor came running over to me. I don't think I blogged about this back in May, but I had a routine followup meeting with the school's speech pathologist, occupational therapist and guidance counselor (whom I had never met before) to discuss Nathan's progress. To make a long story short, I basically broke down and cried my eyes out about the tongue thing because I felt so bad that Nathan has had to witness and deal with my health issues essentially since he was born and I knew it was affecting him. They must have spent 30 minutes talking to me and assuring me everything would be ok and they would keep an eye on Nathan. When Ms. D (guidance counselor) came running up to me she gave me a great big hug and asked how things went with the surgery. Then she winked and asked what class Nathan got into. When I said he got into the MAP class she said, "I know, there are just certain people we take special care of". It is suppose to be a lottery so it was so sweet of them to "break the rules" a bit for us.
I got a lot of compliments today from people I haven't seen all summer. I have to say, aside from some swelling under my chin I'm looking good. I've lost about 25 pounds with the surgery and diet change and now weigh what I weighed when I was 20! That's a size 6 folks! I do need to work out and tone up, but over all it feels good to be "thin". Now, if I can just physically start to feel better all will be good in the world.
We had "open house" at Nathan's school tonight. Since he is in a combined 1st and 2nd grade class (37 students) there are two teachers and they are so cool. He's going to love the next 2 years!
During registration this morning the guidance counselor came running over to me. I don't think I blogged about this back in May, but I had a routine followup meeting with the school's speech pathologist, occupational therapist and guidance counselor (whom I had never met before) to discuss Nathan's progress. To make a long story short, I basically broke down and cried my eyes out about the tongue thing because I felt so bad that Nathan has had to witness and deal with my health issues essentially since he was born and I knew it was affecting him. They must have spent 30 minutes talking to me and assuring me everything would be ok and they would keep an eye on Nathan. When Ms. D (guidance counselor) came running up to me she gave me a great big hug and asked how things went with the surgery. Then she winked and asked what class Nathan got into. When I said he got into the MAP class she said, "I know, there are just certain people we take special care of". It is suppose to be a lottery so it was so sweet of them to "break the rules" a bit for us.
I got a lot of compliments today from people I haven't seen all summer. I have to say, aside from some swelling under my chin I'm looking good. I've lost about 25 pounds with the surgery and diet change and now weigh what I weighed when I was 20! That's a size 6 folks! I do need to work out and tone up, but over all it feels good to be "thin". Now, if I can just physically start to feel better all will be good in the world.
Saturday, August 9, 2008
I can tie my shoes and potty progress
Oh, to have something to blog about other than health....pure bliss!
Yet another milestone has been crossed. Nathan officially learned how to tie his shoes today. He's been practicing here and there, but today when we promised to get him a Star Wars toy he's been wanted if he mastered the skill he jumped right to work. He tied them 20 consecutive times, double not and all. Go Nathan!
One of our other summer goals was to get Reese sleeping without a pull-up at night. He's been potty trained for nearly 2 years, but I like my sleep so much that I haven't pushed the issue of night training. Finally, we took the plunge...cut out the before bed drink, made a chart with stickers and promised him his own special toy if he could make it 30 days with a dry bed. Four nights of success and counting!
And I thought with our crazy summer we'd never make it!
Yet another milestone has been crossed. Nathan officially learned how to tie his shoes today. He's been practicing here and there, but today when we promised to get him a Star Wars toy he's been wanted if he mastered the skill he jumped right to work. He tied them 20 consecutive times, double not and all. Go Nathan!
One of our other summer goals was to get Reese sleeping without a pull-up at night. He's been potty trained for nearly 2 years, but I like my sleep so much that I haven't pushed the issue of night training. Finally, we took the plunge...cut out the before bed drink, made a chart with stickers and promised him his own special toy if he could make it 30 days with a dry bed. Four nights of success and counting!
And I thought with our crazy summer we'd never make it!
Thursday, August 7, 2008
Thursday
This week I met with another radiologist to discuss treatment options. He did present us with an alternative to traditional external radiation (like I've had before), Brachytherapy (Internal Radiation Therapy). It would require me spending at least 5 days in isolation in a NY hospital with "rods" inserted from under my chin into my tongue and looped back down to my chin. Radiation would be "implanted" directly into my tongue. The plus is that it limits the amount of radiation to external structures (salivary glands, thyroid etc.) that could be negatively affected by the radiation. As you can imagine, neither option sits well with me.
I also met with the natural medicine clinic and was presented with another alternative, a combination of diet changes and supplements. It would be based on the Gerson Therapy. It would be a pretty dramatic diet commitment, but since I'm not in a terminal situation I should be able to incorporate the program in moderation. I just have to figure out what that moderation is. I'm strongly leaning in this direction, but still have more thinking and reading to do. I'm also going to add Reiki, acupuncture, meditation, and the teachings of Abraham/The Secret to the nutritional changes. It's all so overwhelming! So much to take in and consider.
On a completely different note, we found out Nathan got into the MAP (Multi Age Program) for 1st and 2nd grade. He'll be in this class for the next two years and we are so excited. We applied at the end of last year for the lottery and just got word this week. We have already found out that 4 of his closest friends will be in the class too. He should have no problem adjusting this year. I have heard nothing but wonderful things about this class and am looking forward to him being a part of it.
Off to get ready for my Reiki session. Think happy healing and decision making for me.
I also met with the natural medicine clinic and was presented with another alternative, a combination of diet changes and supplements. It would be based on the Gerson Therapy. It would be a pretty dramatic diet commitment, but since I'm not in a terminal situation I should be able to incorporate the program in moderation. I just have to figure out what that moderation is. I'm strongly leaning in this direction, but still have more thinking and reading to do. I'm also going to add Reiki, acupuncture, meditation, and the teachings of Abraham/The Secret to the nutritional changes. It's all so overwhelming! So much to take in and consider.
On a completely different note, we found out Nathan got into the MAP (Multi Age Program) for 1st and 2nd grade. He'll be in this class for the next two years and we are so excited. We applied at the end of last year for the lottery and just got word this week. We have already found out that 4 of his closest friends will be in the class too. He should have no problem adjusting this year. I have heard nothing but wonderful things about this class and am looking forward to him being a part of it.
Off to get ready for my Reiki session. Think happy healing and decision making for me.
Monday, August 4, 2008
Therapy Session
A bomb was dropped on Jake and I last Friday when we went to the doctor for a simple check-up....the tissue removed when I had surgery indeed had cancer in it.......enough they are recommending I consider more chemo and radiation. They got clear margins, but just can't be sure I'm safe from it coming back. And why the hell they didn't mention this before now I have no idea.
My immediate response, "No, I won't do it". And I looked the doctor right in the eyes and said just that. The risks and side effects from radiation to the same area twice can be awful and long-term. A risk I don't think I'm willing to take. If it didn't work the first time who's to say it will work this time? Fortunately, he fully understood my point and understood if I chose not to do it.
Ironically, I had been to see a nutritionist/holistic practitioner the day before. Jake and I talked a lot about taking a "natural" approach instead of the toxic radiation and chemo. Thanks to my mom and his mom's love, knowledge and belief in the mind/body/spirit approach to healing, this was not a far fetch idea for us to consider. We talked to both of them as soon as we got home and they were very supportive.
I spoke to Jennifer P. and Stephanie yesterday, both have had radiation to the face/neck and chemo and both agreed they too would not do radiation again. It was like a breath of fresh air to talk to two people who knew exactly what I would be facing and to support my idea of a different way to health. Now, I just have to be 100% sure it's the right choice for me.
I'm tired, not just physically tired, but emotionally tired from this repeated "cancer theme" I've had in my life these last 6 years. I'm exhausted. I feel beaten and bloody yet determined to fight my way out of this.
Jake said he was going to blog about all of this and I said no. I didn't want anyone to know what was happening. I'm sick of blogging about being sick and putting all my dirty laundry out there for everyone to see. However, this morning, I decided it might be therapeutic.....so I'm here. Thanks for the therapy session.
My immediate response, "No, I won't do it". And I looked the doctor right in the eyes and said just that. The risks and side effects from radiation to the same area twice can be awful and long-term. A risk I don't think I'm willing to take. If it didn't work the first time who's to say it will work this time? Fortunately, he fully understood my point and understood if I chose not to do it.
Ironically, I had been to see a nutritionist/holistic practitioner the day before. Jake and I talked a lot about taking a "natural" approach instead of the toxic radiation and chemo. Thanks to my mom and his mom's love, knowledge and belief in the mind/body/spirit approach to healing, this was not a far fetch idea for us to consider. We talked to both of them as soon as we got home and they were very supportive.
I spoke to Jennifer P. and Stephanie yesterday, both have had radiation to the face/neck and chemo and both agreed they too would not do radiation again. It was like a breath of fresh air to talk to two people who knew exactly what I would be facing and to support my idea of a different way to health. Now, I just have to be 100% sure it's the right choice for me.
I'm tired, not just physically tired, but emotionally tired from this repeated "cancer theme" I've had in my life these last 6 years. I'm exhausted. I feel beaten and bloody yet determined to fight my way out of this.
Jake said he was going to blog about all of this and I said no. I didn't want anyone to know what was happening. I'm sick of blogging about being sick and putting all my dirty laundry out there for everyone to see. However, this morning, I decided it might be therapeutic.....so I'm here. Thanks for the therapy session.
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