Nothing yet!

Still nothing yet from the Dr. about the drug change. I still am coping with the added pain since the switch, some days better than others.

This "black cloud" effect as I like to call it is still going on, Brenda, she's been having these terrible attacks, sometimes lasting hours and hours. We've been to the hospital and a consultation with a specialist. Could be one of three things, Upper Back (possible disk issue) most likely from the car accident 3 yrs ago! Could be an ulcer where the small intestine was bypassed to the stomach, or 3, could be a gallbladder issue, very common with rapid weight loss and gastric bypass surgery. So we are awaiting an appointment for a scope of the stomach/gallbladder. X-rays have already been done on the back, but no word yet.

If that isn't enough for her, she had a tooth break off at the gum line, top front! So now the visits to the dentist to fix it.

Earlier this month it was the water pump on the van! Just can't seem to get a break this month, as if expenses vs income wasn't bad enough already. This positive attitude thing is hard to accomplish with all of the added things being thrown our way, but we WILL prevail!!! No if ands or buts.

This move we just made was to make our lives easier and better, and so far it has been a battle to get it that way, but I would not trade it for the world. This place is so relaxing, with the view and all. Most days we just sit hear reading and the t.v. is hardly on during the day. And like I said the view is priceless and I could (weather permitting) just sit on the balcony taking it all in for hours at a time. Ahhhh.

Brenda and I attended the memorial benefit for my FB friend Donald Wilhelm, finally got to meet his wife Amy, and to see all the donations for the benefit, Donald was well loved and appreciated. His blog, book and attitude helped many, including myself, cope with cancer. His website is www.thistimesacharm.com and has a book by the same name This Times a Charm, lessons of a 4x cancer survivor. I will put a link on here for it.

Another good friend Cathy Fisher Morris aka Chemo CatFish, received some great news this week, that she is in full remission and will be proceeding with a stem cell transplant in Nov. The will be using her own cells that were harvested last year, however keep all in mind, having a compatible donor available would be nice. So if your not on the Bone marrow registry, make sure you get on one. Very simple, just a swab of the inside of your cheek is all it takes. Again I will put some links on here on how to get on a registry. I am so happy for Cathy!!

Well that's about enough babble from me for now. Time to work on putting all the links on here, till next time, wishing everyone well in their journey's where ever that may be!

New Drug, New Begininng Update.

Seen my Radiation Oncologist today for the 1 month follow up since switching from Gabapentin to Lyrica. During the switch I went through only what I can call Hell Week! Once down to 1 Gabapentin capsule from the usual 3 I was feeling significant effects of the CIPN. Since being on the Lyrica for the past couple weeks, I have yet to feel any significant difference, so the Dr. is going to consult with a pain specialist up in London, and will be getting in touch with me within a week or so.

As Lyrica is not fully covered on my drug plan, and increase in the dosage also means and increase in cost to me. So all being said, unless there is something "new" out there, I will be going back on the Gabapentin. My preference would be no drugs at all, however the pain level just would not be tolerable for any length of time. A day without drugs, Oh, it was a thought even though only for the brief moment it was.

Anyone out there reading or following this with experiences with Gabapentin vs Lyrica, I'd like to hear your experiences so drop me a line here .

Wishing everyone well in their journeys where ever that may be.

World Lymphoma Awareness Day

Today, September 15 is Word Lymphoma Awareness Day. I cannot stress enough the importance of awareness! I am puzzled why when lymphoma/leukemia is #5 on list list of cancers and on the rise! there is not the awareness there should be.

While wearing my lime green ribbon in support of Lymphoma/Blood cancers awareness month, I am frequently asked what is the symbolism of it! Let's face it everyone knows what a yellow ribbon is , a pink ribbon is, a rainbow ribbon.......etc. It's time, It's time we lymphoma survivors/warriors, caregivers, doctors, nurses, all of us, come together and spread the word of Awareness around the world. Even on T.V., Radio, all media forms, I do not hear anything about lymphoma awareness. This needs to change. I've lost too many friends in the last year to not put awareness in the face of everyone I come in contact with.

It is my hope to put together some kind of event here locally next year to mark World Lymphoma Awareness Day. With my forgetfulness, chemo brain, it is going to be some task. I have connections in media and entertainment, I will do what I can to bring them all in on some kind of event. Might even put it together with a bone marrow donor swab event! Sounds good, just gotta try and pull it off now. Open to any and all ideas/help etc. I know this is just a tiny tiny blog in the world of blogs right now but if you blog surfers out there come across this, spread the word in your communities.

My thoughts go out today to all those in the battle, no matter where you are in your journey.

R.I.P. Donald Wilhelm

It's with sadness that I write today about Donald Wilhelm a friend who passed away peacefully with his wife Amy at his side September 13 2010. Don was a 4x Hodgkin survivor when he wrote his book This Times a Charm, Lessons of a 4x cancer survivor. His book has been an inspiration to many in this battle.

I am adding links to Don's book and website to this, something I should have already done but hadn't gotten around to yet.

As a 4x survivor myself I have followed Don's journey very closely. I actually talked to him on the phone a month or so ago, shortly after his Fox 2 Weekend news interview on National Cancer Survivors Day. He had mentioned to me at that time he had wished they had given him more than the 4 minutes they allotted to him.

One of the struggles he faced was trying to be part of a clinical trial. He had researched and done everything he could to try to get in on the trial of SGN-35 and felt it held promise for him. I truly believe that if the "rules" regarding the trial were different he may just have had a chance.
You can bet I'll be looking into the "rules" and advocating for change, along with many others I am sure.

So I take this time say goodbye to a dear friend and fellow warrior, someone who put others before himself and to his wife Amy and his family I extend my and Brenda's deepest condolences on your loss, there are no words that could possibly express what you are going through at this time.

Below is Don's final Facebook status,

I’ve filled my original goal here on earth. It was to spend the remainder of my life helping cancer patients. It seems to be where I found the greatest joy and the most sense of worth. I’m moving up into the next roll. I’ll leave my faithful followers to slip in and fill the gaps. Love to you all and positive energy, Don Wilhelm (Don entered into Hospice care as of Weds.)

New drug....new begining??

Well, today is day one of my switch from Gabapentin to Pregabalin (Lyrica). The last two weeks of the weaning process off of Gabapentin have been for lack of a better term, HELL! The pain in my hands and feet has been terrible, even with pain killers.

So, the burning question is will this finally be the relief from the pain I have been seeking for the last year and a half???? Time will be the judge of this one. I've always described this journey as a roller coaster ride when asked what it's like. This is just another of those twists, turns. climbs or falls associated with that ride. I am hanging on, so I will see where this takes me, because I am just a passenger on this ride.

Very important night for cancer tonight as well. SU2C is tonight a 8pm. So tune in!!! It is also streaming on Facebook, http://facebook.com/su2c.

Enjoy your evening and have an even better weekend!

Ok, what is going on here!!

Well let's start with the good side of things. I finally received my new t-shirt from www.thelymphomashop.com . What is says is: (Never Give Up Til there's a cure.) Now, not to wear it out this month! Guess I'll have to switch it up and actually go back to wearing ribbons I made.

Now for the crap that is going on here in Windsor,ON. with regard to cancer care. There have been two different articles in the local news this week about cancer patients having to go stateside for treatment. This is also costing them out of their own pockets as OHIP (Ontario Hospital Insurance Plan) is not reimbursing them because they did not apply for pre approval.

I am posting the links here so that you may read for yourself, I don't think there is anyway for me to put my spin on it without rambling for hours about it.

http://www.windsorstar.com/health/Cancer+patient+says+dead+without+medical+treatment/3491778/story.html

http://www.windsorstar.com/health/Windsor+cancer+patient+feels+betrayed+Ontario+health+care+system/3487650/story.html

I am just appalled that they would actually suggest that you seek out Hospice and wait to die! Then again I must keep an open mind as there are usually two sides to every story. Some of my past experiences though have me really thinking about all of this.

Health wise, I've really been feeling the effects of the CIPN (chemo induced peripheral neuropathy) My radiation oncologist is switching my meds from Gabapentin to Lyrica. The gabapentin has since the beginning only taken the edge off the pain in the hands and feet, so after what feels like forever, we are making a change. I have slowly been weaning off of the gabapentin and have gone from 3 capsules 3 times a day, down to 1 capsule 3 times a day. Friday I will be doing the actual switch to Lyrica. We shall see where this goes from here. Hopefully the Lyrica can give me better relief from the pain associated with the CIPN.

Brenda and I were out to the trailer this past weekend for the annual Labor Day banquet and draw for the campers. Had a good dinner and good time with friends out there. Still own the trailer for now, no sale as of yet, and we didn't win anything at the draw. So that pretty much puts camping season behind us, will be time to winterize again real soon, unless we sell it before then, campground closes end of Oct.

Will see both my GP and Onc. both later this month as they are monitoring this med change. Well, not much more for now.