Just a quick thanks to everyone for making it such a great success for Julia and her class in The Relay For Life, Mini Event today. It was just a warm up for the main event which is June 7th but she still managed to do almost 6 miles around the track in the parking lot in the couple of hours they had today on a beautiful day! We were able to donate over $1,300 to a great cause. Thanks again to everyone!
Julia in the Purple Shirt, White shirt in the Video below
She’s in the white shirt in the video…
When I first started doing these posts it seemed to be with a sense of urgency to get them done as soon as I got back from the doctor or hospital. I had another MRI of the knee done January 18th and I still havent put an update on the site. All went well with that one too. “You’re in good shape for now” and the spot where the cells were found is “clean as a whistle” as he tells me. I’m not sure what to make of the doctor’s body language or his attitude towards me when he comes in to see me. Usually you can tell what he’s thinking or what to expect the first thing when he walks through the door by the expression on his face. He comes in with a smile on his face the last 2 times. I didnt even want to ask him what state he considered I was. All I know is he doesnt have that somber, dismal look on his face like there is bad news to go over with me. It’s the kind of thing I realized after I walked out of there and all I think about is the day he told me I am going to die from this. Feels like a long time since that conversation. It will never leave my head. I did catch his little disclaimer of “for now” after the comment of you’re in good shape. Maybe I still do have a case of only wanting to hear good news now and didnt want to get into that discussion with him this past visit so I’ll think about more direct questions like what he thinks of my prognosis is on the next visit in March.
I am starting to get back into a bit of a normal routine. Walking a couple miles a day. Trying to do some stretching and yoga type stuff to get back into shape a little bit. That all took a lot longer than I expected it too. I guess that chemo sticks around until it feels like not effecting you any longer. You cant just be done with it and start feeling better in just a few weeks. I may even attempt a return to Wednesday night basketball soon. The knee and foot hurt a lot but I need to get out and see what happens. You know what? It is better to look good than to feel good my friend!
I must have really looked like hell during the chemo treatments because everyone keeps telling me how great I look now! So, Thanks for that..I feel like I have certainly come a long way and its been a rough year for sure. Soon we’ll all be sitting around the campfire telling stories about it all and it will be a distant memory. Its strange too…I try not to talk about the whole situation with any sort of bias towards being overly optimistic or negative. I know anything is possible these days and not too much would surprise me. Never in my life would I ever think I would find the true meaning or feeling of this:
1 Year ago today. 1 year ago today things changed the minute I walked through the door to get the results of what I thought was just a routine follow up. I was just going to get the results of the biopsy of the lump on my knee. It’s just a cyst, a lump, nothing to worry about. It will be a pain to have surgery to get it removed but can handle that. I had just had surgery on my foot and nose the prior 2 months, this will be no big deal. I’ll never forget that feeling of knowing something was wrong the second I gave that receptionist my name. She immediately said Oh, Dr. Khan wants you to get a CAT Scan of your chest. They rushed me to get a scan of my chest and stomach. All I kept thinking was “why the heck do they need to see my chest?” the lump is on my knee?! The hour or so I sat in that exam room by myself felt like days…what in the world could this be?
Fast forward a year later and I get some different news. Just before Christmas I went for CAT scans of the chest, stomach and pelvis again. This time I get a new name: NED – No Evidence of Disease….. Hooray! Strange thing though. I don’t have that feeling of a huge weight being lifted off my shoulders. Of course I am happy everything is clear on the scans but there will always be that feeling of what if it comes back or spreads somewhere else? Like the day Dr. Healey looked me in the eyes and said “you’re going to die from this” and just a few days ago when Dr. Gounder answered my question of what state I am considered now with “Cured”, it’s hard to believe either one for some reason. From what other people have said that have gone through a similar thing, this is normal. I dont know if it will ever go away. This is my new normal. It’s a viscous circle of thought at times. Every little ache and pain I feel starts the wheels turning in my head…not a day goes by that I dont feel around on the spot where the surgery was done to feel for lumps. If this is my new normal I could be in trouble! 😉
All I can say is, lets all hope the worst is over with. I feel like I have been through hell and back, that is for sure! The pain is still always there in the knee. I keep telling myself if this is the worst thing I have to deal with now I will be happy! It hurts all the time but I can still get outside and play soccer and basketball and run around with Julia. It wont be long now before she can beat me at everything because my knee sure doesnt work like it used to! I’m so thankful just to be able to get out there and run around with her. This song tells the story of how I feel:
I know its been a while since the last update and this one isn’t quite up to par with the others but I wanted to get an update done to let everyone know the good news. Thanks to everybody for reading the site updates and responding each time I write. I really enjoy all your comments. Let’s make 2013 a great year! The next posts can be about all the great times we plan on having on camping trips and fun at the beach this summer.. Now if someone could do something about this darn cold weather!
Sorry it took so long to update the site after such a big build up to the MRI coming up on October 23rd. It was a crazy week. I didn’t feel well the whole week and just wanted to sleep the whole time. Then when it was all over with I didn’t feel like doing a darn thing! However, after all that I am happy to let you all know the MRI went well and all is clear after this MRI! What a relief! I am thrilled that nothing is showing in the MRI yet still quite frustrated with how I actually feel..I know, it will take a while…I just went through months of hell and torture and it doesn’t just stop when it all ends. Right now I am dealing with swelling in my ankles and legs which makes standing and walking quite difficult. From what I understand it is common and takes a little while to go away. I am waiting for a follow up appointment with the oncologist just to make sure everything is ok. Otherwise, I am trying to be patient with the recovery and get back to feeling as normal as possible. Thanks to everyone for writing and keeping me sane throughout the last few months…its been a rough time and I really appreciate all your thoughts and emails…which reminds me, right after the last post went out my main computer died and I lost a bunch of your emails so if I didn’t reply its because the hard drive croaked. Sorry about that….I did get them and read them.
So where does this leave things? That’s the $64,000 question…My crystal ball is in the shop so I really can’t say right now. For the short term in means I am ok. Beyond that only time will tell. We can only hope nothing comes back or spreads anywhere else..CT scans and MRIs every few months will be the norm for a few years. I’ll take that as a trade off….although you have no idea how much I have come to despise hospitals and doctor visits..if I never saw another one it would be too soon! For now we’ll leave it at this:
Also, if anyone was wondering, we were one of the lucky few that didn’t lose power or have any damage from Sandy…dodged a bullet there! Of course, now there is another storm coming tomorrow! We’ll see how that goes. Its still hard to get gas around here. Long lines if you can find any. That too will pass..people are crazy…
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Its a big building with patients in it…but that’s not important right now. That’s about all it is. It’s certainly not a big building full of people ready to care for you and do whatever is necessary to make you feel any better. It all started last Saturday. My knee started feeling a little bit …
Its been a while between posts again…I don’t even know where to begin to tell you how terrible going through this crap has been at times…I wouldn’t wish this on my worst enemy. No wait, I take that back. This is EXACTLY what I would wish on a worst enemy. Its miserable. At times all I can do is sleep. Other times, kind of like today, I am stir crazy and cant sit still yet I don’t feel like doing anything productive. I get up to do something then 10 minutes later I feel like I have to lie down to rest. After about 10 minutes of that I get restless and I have to get up to do something. That process has been repeating itself since about 9 AM today…I wish I would just sleep all day like I did yesterday..
Besides all that fun the chemo effects the way everything tastes..so while my appetite hasn’t really been effected much when I do eat nothing tastes like it should. I get urges for stuff like a cheeseburger or a sausage pizza. Then when I eat it I’m so disappointed I cant even taste it. That goes away right about the time I go back for the next treatment. So usually the day or so before the next treatment I eat like a pig because I can finally taste things! A lot of people have asked if I lost weight. I don’t know if I am lucky or what but I think I have actually gained some. The other positive has been my blood work. Each week the blood counts have been very good. White cells, platelets etc have all been perfect. Like I haven’t been getting anything the doctor tells me. He says that means my immune system is holding up well..
On the bright side, if there is one, there are only 2 more treatments left! Its a good feeling knowing these are the last 2. On the other hand, its sort of depressing knowing I have to go through this one more time..right when I start feeling better next week I start the process all over again…I kind of feel like this:
Every week I go there its the same mixed feelings of this is gonna suck but HIT ME so I can get it over with and hopefully this is working!
Meanwhile, the theme song of the week is surely this:
If I can borrow a few lines,
“Everybody gets high, everybody gets low
These are the days when anything goes
Everyday is a winding road
I get a little bit closer
Everyday is a faded sign
I get a little bit closer to feeling fine”
I have certainly had the ups and downs over the last few weeks…right after the last post when I said I hadn’t lost my hair naturally it all fell out. Nothing but peach fuzz left. That was a little depressing. I felt like I wanted to crawl in a hole for the next month until this was all over and it grew back but after it sunk in it was really happening I realized that was the least of my worries. For some reason I notice more and more stories like this:
Study Shows Baldness Can Be a Business Advantage
So I have that going for me….
To borrow from an old cliche, soon we’ll look back and laugh at all this…boy I sure hope so!
After the last treatment I go for an MRI of the knee the following week to see how things look. Cross your fingers nothing shows up on that one..I’ll have to get CAT Scans of the chest, abdomen and pelvis too. Then I wait…scans every few months for the next 5 years and hope for the best. Simple, right?
For some reason this new Southern Comfort commercial cracks me up:
It’s an old Song named “Hit or Miss” by Odetta…maybe its just me? I think its hysterical!
In other news, its been 1 full “cycle” of chemo so far. The cycle is the first week I get 1 drug, Gemcitabine alone…it takes 90 minutes to get it through IV. The next week I go back and get that along with Docetaxel. Then I get a week off and start the whole process again. The first week was pretty rough for some reason. Maybe it was all the anxiety an stress of the unknown and not relly wanting to go though with it and the reality that it was really happening but I felt awful from Friday until Sunday. I was achey, stomach was bothering me and worst was the restless feeling where I didnt feel like I could relax. I would sit down to rest then feel like I couldnt sit still and had to get up to do something yet I didnt feel like doing anything! It was a viscous cycle. Luckily that didnt last past Sunday and I was fine the rest of the week…Until Thursday! When I went for the double dose it took 2 hours for the IV..what a thrill that is…at least they give you lunch on that day. At first I didnt feel like it was going to be so bad for the double dose. That same restless feeling hit me by Saturday. Its terrible feeling that way..By Sunday I felt a little of the stomach aching and fear of being too far from a bathroom again. I also had to go Friday for a booster shot of Nuelesta (used to reduce the chance of infection in people who have certain types of cancer and are receiving chemotherapy medications that may decrease the number of neutrophils (a type of blood cell needed to fight infection) The side effect of that is “bone pain”…never heard of that before!? I thought I was in the clear for that…until Wednesday morning…woke up with a little back pain…by noon I could barely move! Excruciating pain like I never felt before! It only lasted for a day but that was more than enough. They told me since I experienced it that time I can probably expect it every time…..great!!
I had the treatment again on Thursday…so far this time has been relatively uneventful. Maybe I know what to expect and the stress is not so high this time but its not effecting me as bad this time…knock on wood! as the song goes, I just gotta roll with it:
For anyone who hasnt seen me in a while, I also got myself fully prepared for hair loss from chemo…I have been wanting to shave my head for years now. I actually bought the shaver a couple years ago and never used it..so here is the proof I did it!
I like it being short! So far now hair loss…hope it stays that way…..
Thats about all the news for now. Just trying to get through these next few months. After this Thursday I will be halfway done. I am hoping I handle Thursday’s treatment better this time too. I wont lie, I am a whimp when it comes to handling this stuff…I just want it to be over with! I know I have to do it but I can certainly see why someone would quit after going through it. It sucks! As I said many time before, this too shall pass…..and with any luck…this will be the end of it all! Wish me luck…