Follow up & a Bonus.

 Thanks to everyone for all your comforting and at time hilarious responses to my last post on here. Since that post things took a few more days to "get moving" and seem to have leveled off for now. Not sure what that was all about, but hope to get some answers soon.

 It was not a fun week by any means, and I can't count all the medications I took to get things moving again, but I am glad to lay off of them now. I am again eating somewhat normal, so we will see how it goes over the coming days.

 I will be seeing a "new" oncologist at the Cancer Center next week, Dr. R. Gupta. I've heard good things, and as my regular medical oncologist told me," it might be good to have a fresh set of eyes" look at my case. I agree, and look forward to seeing  her.

The same day, later in the day, I will all be seeing Dr. Peer a local Internist, for consultation for a colonoscopy, If I recall correctly, it's been about three years since my last one. Probably overdue I guess. I recall my last colonoscopy by a different Dr. and woke up during it, thought the probe was going to push straight through my abdomen from the inside out! Hope if I do have another, they give me a good dose of what ever it is, to knock me out!

 This Saturday night is going to be a night of entertainment, courtesy of my friend and former co-worker/landlord, Deb Palmer. About a month or so ago during a conversation we had I mentioned Roger Daltrey was going to be in town at Caesars Windsor to perform The Who's Tommy. The next thing you know I have tickets to see this "historic" event. Wow! Last October Brenda and I got to see Roger Waters perform "The Wall" live in Detroit courtesy of Brenda's Uncle Tom, and now this October, "Tommy", courtesy of Deb! Thanks Deb, we are so thankful, and looking forward to it!



It's nice to have such caring, and generous family and friends! Living on a disability pension is another obstacle  in itself! It is very hard living payday to payday, but we do it, and like I said, thanks to the generosity of family and friends, we get to enjoy these outings and getaways that we would not otherwise be able to do! So again, thank you everyone, we are very appreciative of your generosity. Now, just to win some more contests! I'm in a dry spell this year, and hockey season is upon us. Last year I did well winning tickets to Windsor Spitfire games.

 This week has been an extra special one with the release of all the newly remastered Pink Floyd material, all I can say is, I've died and gone to heaven! If you haven't already you must check out Why Pink Floyd? and see all of the material and box sets now available. I have to say, two of  those items are on my Birthday/Christmas wish list, The Dark Side of The Moon Immersion Edition, and The Discovery Edition Box Set, which is all 14 of their albums on CD remastered! Check out the short video below outlining all that's available, along with some of the best music in the world to listen to while you watch! Enjoy.



 As a lot of you know, and if you don't, you do now, Pink Floyd is at the top of my all time favorites list, and will always remain there. This is the music that helped get me through some of my toughest days while waiting for, and during treatment. My mp3 is loaded with only Pink Floyd, hours and hours of it!

 As an added bonus I leave you with, Roger Waters performing with The Foo Fighters on Late Night with Jimmy Fallon this week. Until next time, Enjoy!

The Interview:



The Performance:

It's a "Crappy" world I live in! and a P.S.

    There's been a lot going on since my last update. After my Oncologist visit last week I got a call the following morning with my C/T appointment, which was Monday afternoon, and not a moment too soon. The pain in my abdomen and lower back became all most unbearable! It really kicked up a notch on Friday and continued to get worse throughout the weekend. Monday could not come fast enough.

     I was pretty much in agony on Monday and was glad to get the scan over and done with. Maybe this would shed some light on what was causing all this pain and being uncomfortable. By Tuesday the pain had again doubled, abdomen, lower back, right hip. By Tuesday afternoon enough was enough. Off we went to the Emergency Dept.

     After about an hours wait, I was finally called in. I informed them of the level of my pain and where it was and told the nurse I really needed something for the pain. What I had been taking (Hydromorphone) was not enough, it was not even touching the pain at this point. She then proceeded to insert a shunt for blood work and any possible IV's.  Good luck! the day before when the tried to put in a shunt for the contrast for the C/T scan, it took them five trys before finding a vein the could get flow in and out of!

     This day was going to be no different, four trys before they found one, I say "they" because a couple different nurses tried, as was the case the day before as well. After finally getting a good vein that worked the took the blood samples, and the nurse said the Dr. would be in soon. After some time the Dr. finally came in, poked and prodded and asked questions. After informing her of what has been going on and how this has progressively gotten worse of the past couple months she left the room to go order an ultrasound. I also informed her before she left the room that I had gotten nothing for pain yet and to please get me something for  pain.

     A few minutes passed then a porter came in to say he was taking me to ultrasound, after wheeling me down to ultrasound, I was parked in the hallway outside in the waiting line, thank goodness only one other gurney ahead of me! It was about fifteen minutes before the technician finally came out and wheeled me in, she did the ultrasound, took many stills, then wheeled me back into the hallway in the lineup to got back to E.R. It was about five minutes when the porter returned and brought me back to E.R.

     After getting back the nurse came in again shortly after returning and I again informed her I really needed something for pain, please! She replied, "no one gave you anything yet", no they haven't. She went off and came back with a syringe of pain relief, finally! It was about five minutes later after getting the shot that I started to feel some relief.

     It was probably another twenty minutes or so that the Dr. came back in and said she was going to send me down for x-ray's now. The same porter was there within minutes and took me down the hall for x-rays. The nurse asked if I was able to get off the gurney on my own and make it over to the x-ray table, to which I replied sure! After sitting up to get off the gurney I thought it best I take a second or two to gain my bearings before walking the few short steps to the table, the pain drugs were kicking in full now.

     Shortly after getting back from x-ray the nurse came in and asked "if the pain was gone or if I needed more medication for pain". Since the pain was not completely gone, I replied, "no the pain was not totally gone" and asked for more, after all I still did not know how much longer I was going to be there. I am sure most of you know just how comfortable those emergency room gurneys are right?  NOT! 

    It was when the nurse came back in with my pain medication that she informed me they would have to take more blood for blood work, when I asked why, as this had already been done, she informed me that I came out so slowly the first time as they did not have a good enough line in, that it had clotted and they needed more to redo it. The nurse from the lab had followed her into the room so she took blood, then I got my pain shot. 

    So that means that I will be there at least another hour to get the blood work results. As we had been there about three hours now and it was around six thirty, Brenda was getting hungry, and it was decided she would go home for a bowl of soup, as the hospital cafeteria was most likely closed now. So Brenda left to go home to get a bite to eat. Not a minute after she leaves the room the Dr. finally comes back in and says after looking everything over, they noticed my bowel, and intestine were "full", and she was going to give me a prescription for CitriMag, make a referral to see and endocrinologist for consultation for a colonoscopy and send me home, when I asked if that was going to be right now she said yes. 

     I immediately called Brenda hoping to get her before she left the parking lot. She was in the car but had not left yet, so I told her to hang on a few minutes and wait, I would be out shortly as I was done. After getting dressed the Dr. and nurse came in with my prescription and referral paper, unhooked me from the B.P. cuff and took out my shunt, and I was on my way, hopefully this is the answer and end to the pain.

    

      After getting in the car, I informed Brenda that they had finally after looking at everything came up with the diagnosis that I was "full of shit" literally! She chuckled and said I could have told the Dr. that, all they had to do was ask! lol. Anyway, I told her they said everything was full, backed up and we needed to stop at the drugstore on the way home to get my prescription. 

     

      So, after taking a full bottle of CitriMag, doing it in thirds four hours apart, you'd have thought that would have worked. Nope, a got out very little with that and mostly gas! Unreal. So I called the hospital back the next day to tell them it did not work, and should I try another bottle, all I got from them was if I feel it did not work I should come back in. Since I did not want to do all the waiting again I called my home nurse and asked, he told me it could not hurt so go ahead. I did. I went and got another bottle and this time took it half and half. Half right away and the other half four hours later. I again had "minimal" success with the second bottle!! WTF!

  

      Next morning, yesterday, I call for an appointment and get in to see my G.P., I informed him of the happenings of the past couple of days and ask him if he could prescribe an enema from me. He gave me a prescription for two enema's, I left, stopped at the drugstore to pick them up, The woman at the pharmacy counter was in disbelief the two bottles of CitriMag did not work!  I got my prescription and headed home. Shortly after getting home, my home nurse arrived and did my normal check up and I showed him the two bottles I just picked up. He did not seem to think I would have much success with them as that only cleans out the bottom end of the intestine, and the CitriMag probably did not do anything for the top end.

      After my nurse left we did the enema, again, got very little out from that!! What the heck. Later in the afternoon I finally had a movement that was "something" more that what I had been getting. Still nothing big enough to think I've emptied the top half out. I called my oncologists office to see if they could call in a prescription for Lactulose which my home nurse had suggested might work on the top end stuff if the enema did not work. Later in the early evening I called the pharmacy to see if the prescription was ready, I found that they had never called it in!                                                                                                                                                

      This morning after having a very uncomfortable evening, I called the pharmacy that is located in with my GP's office and asked them to have him fill a prescription for me for the lactulose. I am currently awaiting a call to say it's ready, should I not hear from them by twelve thirty, I'll be calling back to see what's going on, before my GP closes at three o'clock.

   

     So, I continue the vicious cycle of taking pain meds for the pain, yet bind me up, and then taking everything on earth to try and get things moving again. I have to say, after all I have been through with chemo, transplant, radiation, etc. This has to be the worst in my life I have ever been backed up, not fun, a lot of pain, abdomen, back, right side. I would think if there was an obstruction they would have seen it somewhere in all the imaging they did, C/T, ultrasound, x-ray, and the blood work must have been OK, I did not get any phone call saying otherwise.                                                                                                                            

     So, again, here I sit, doing my favorite thing, waiting! 

P.S. Just to add, as the ER Dr. had a chance to see my C/T results and report from Monday, and she told me that the good news was the C/T did not show any "substantial" change with regard to my cancer progression. So there was some "good" news to all of this!

    

World Lymphoma Awareness Day 2011 and My Appointment.

Me, Shannon,(Tim Horton's Mgr) and my Uncle Don

This year the timing of my next follow up appointment with my medical oncologist, just happened to coincide with World Lymphoma Awareness day. The day started as usual with my morning coffee with my Uncle at Tim Horton's, but that was it today, no walk.

My appointment at the Windsor Regional Cancer Program was for 9:15am so I had my Uncle drop me off there just after 7:30am. Yeah, I know sounds a bit early, but normally would not have been. The lab opens at 8:00am, and, I thought, I was suppose to get blood work done before my visit with the Dr. Nope, no blood work today, not in the system. I was sure I was to get blood work every 3 months but apparently not.

So yes, I was indeed very early now. There was other things I could get out of the way however, like doing my ESAS on the computer, getting my pager to be called with when they are ready for me, and then drop off the ESAS printout and Dr's paperwork at the Pod A desk. I also took this time to go and weigh myself for the Dietitian whom I would see after my Dr. appointment, also there was an appointment with my social worker afterward as well.

While waiting I went into the Patient Resource Library and looked up some things on line, and checked out what new books were in. It was while I was in there that my pager went off! What? pager? already?, Not to knock it but this is probably the earliest I have ever gotten in to see the Dr.! Nice. Well maybe not, Brenda is not here yet, as it is only 8:45am and my appointment was for 9:15am so she was on her way but not here yet.

Well, don't get too excited, it was just my primary nurse calling me in to do my vitals and go over my ESAS and any new concerns. Yes, there were new concerns, concern about this lower abdominal pain I have been having. I told her I had seen my family doctor about it, and that he had it pegged as Irritable Bowel Syndrome. I told her that after taking the medications he gave me with no results, I quit taking them. There had been two different medications he had me on, first was Dicetel, and after that did not seem to help he put me on Donparidone which did not help either. I also told her I would not leave today without a scan or ultrasound appointment. We need to get to the bottom of this.

It was while I was in the examination room waiting for the Dr. to come in that Brenda finally arrived, whew!  You see, with my memory the way it is, chemo brain and all, I really need her there to take notes and remember what was said, because I know I would never remember, or at least screw up what was said. That is how I got here early in the first place, something I thought the Dr. had said in the past, but didn't of course.

When the Dr. finally came in she went over the primary nurses notes with me and asked me to jump up on the table to examine me, and then lie down to check out my abdomen. After poking around for just a bit, she hit the spot, the spot that when pushed on feels like someone sticking a knife in me and twisting it. Yeah, OK, I walked into that one! But there it was, the spot that causes all the pain and she found it. Although she does not believe it to be lymphoma related, she is ordering a scan to have a look, just to make sure, she does not want to rule anything out at this stage.

She also felt that even though there was a decrease in one of the nodes on my neck, she felt there was a slight increase in size on the ones under my chin and on the side of my jaw. She has also ordered blood work for the follow up visit for the scan results when I get them. The Dr. also informed me that she would be going on a three week sabbatical, and she would put me in the hands of a new oncologist at the cancer center, Dr. Gupta. Dr. Gupta has come to us from the U.S. where she was before us. It was also agreed that I might just be good to have another set of eyes and opinions on my case. I agreed that I would see Dr. Gupta in her absence.

So, folks, that pretty much leaves us where we are now, in a holding pattern waiting on appointment dates. I think I will give diagnostic imaging dept. a call in the morning to go on  a cancellation list, unless of course they are getting me in quickly anyways.

I've also pretty much put out all the information I can for Lymphoma Awareness Day. Hopefully this year we have gotten the attention of the Governments to recognize the urgency for Lymphoma Awareness, and the funding to bring some of these new chemo medications on board and to get out the message to young adults that early detection of symptoms is the key to getting a chance at having Lymphoma treated as a chronic disease much the same a diabetes.
Hope, it's something we have right?

So I leave you with love, hugs and the links to information on Lymphoma. and Lymphoma groups, If you have any to add just email me! thanks,
Tim, xxx

http://lymphoma.ca/
http://www.lymphoma.org/
http://www.lls.org/
http://www.nlm.nih.gov/medlineplus/lymphoma.html
http://www.mayoclinic.org/lymphoma/
http://www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/care-centers/lymphoma-myeloma/index.html
https://www.facebook.com/pages/Lymphoma-Resources/116254281762523
https://www.facebook.com/pages/Anas-Younes-MD/119508836687?sk=info
https://www.facebook.com/Hope4Cancer
https://www.facebook.com/groups/thelymphomaniacs/?ref=ts
http://www.cancer.med.umich.edu/news/kaminsk.shtml

Funk Therapy.

I'm in a "funk", just not knowing what to do, how to move on, how to get out of it basically. As you've probably noticed I haven't written on here in a while. I have written just nothing worthy of posting on here till today. I figured maybe writing about not being with it might help get things moving along. It seems to have worked! I'm actually writing something to post. 


Since just before going up north last week I really have not felt well. Having these terrible abdominal pains has had me not in the mood for much these past weeks. I've been to my family doctor twice now and he seems to believe it is bowel issues. I'm not convinced it is, however since I've been back from vacation and went to see him again, he gave me more meds, and these seem to have given me some relief, or is it just coincidence?


I'll take this bit of relief for what it is right now. The week we were up north I spent about forty percent of my time there in bed! Even with that I still had a good time and enjoyed the peace, quiet and tranquility of the lake. The outings we had were enjoyable and really enjoyed the country side up there, including the big bear at the dump! The outing on the lake on the Friday before we left was very enjoyable and the scenery was fantastic.

I had time to reflect on a lot of things while up there and still, just not sure on what direction to take next. I have several things on my plate right now and not sure what to do with most of them. I guess I have to get through this "funk" and then maybe I'll be able to move forward and start to get some of these projects done, some of which are time sensitive. I have not even begun to make my ribbons to hand out for Lymphoma Awareness month! This has been a year tradition for me these past few years, so I guess tomorrow I'll have to get busy with that. Maybe that will get me moving with the other projects as well.

Then there is the health issues. This abdominal thing has my mind going, although these past couple days have been better. I still have to figure which way I am going to move forward with regard to treatment options. That one really has me stuck in the mud. Even though I have had the opinion of four oncologists this year so far, three of which have the same opinion, I still the option of further opinions as well. Do I want to go there? Not sure, not sure if that would be the right move or just put me in a bigger spin. It is something I still have under serious consideration right now. Soon, real soon, I will make my decision on that course of action and finalize which direction to move forward with.

Me and Megan

Brenda with Megan

To move beyond all of that stuff, there has been something that has put a ray of sunshine on everything, and that was the birth of my granddaughter Megan Carol-Lyn Mayer, who was born on Wednesday August 31 2011 at 7:14 pm and weighed in at a whopping 9lbs 3oz and was 21in. She is just adorable. Mommy and baby went home today, after spending an extra night in hospital after it was found she had a little jaundice. All is well and they are home now, Brenda picked them up this morning to take them home.

The weather this past couple days has been hot, humid and unbearable to venture out into. The Harrow Fair is this weekend but not sure I want to spend that much time out in the heat, unless of course it cools down a bit by Sunday. Last Sunday we attended the annual Tecumseh Corn Festival which I have not been to in at least 15 - 20 year ago. Had a blast ran into friends there, just really enjoyed taking it all in, and then of course there was the corn on the cob! Um mm Ummmm, was sweet and delicious!

So overall this year has been great for outings, been a long time since I felt well enough to do all of this. And I have to say the majority of our getaways have been thanks to some wonderful generous friends and family without whom this enjoyable summer would not have happened. Still have one big event to attend, again thanks to the generosity of a long time friend, Brenda and I will be going to see Roger Daltrey perform Tommy and Caesars Windsor next month, can't wait! Two classic rock shows, two Octobers in a row, thanks to the generosity of family and friends! You guys are the best.

So, now that this is something I have finally written and will post, it's time to start moving forward with some ribbon making beginning tomorrow. Writing can be wonderful therapy at times, and thus this blog.