Hope and Faith Pt. II

First, let me point out that this is NOT the end of a journey yet, but a significant move to a new "level" of care. 

So today the hope and faith we were looking for did not quite turn out the way we would have liked. First stop of the day was at Brenda's lawyers office for a mediation hearing with the other parties insurance company. When we first sat down with the lawyer he explained to us how they would try to intimidate her into early submission with a low settlement.

When Brenda's lawyer put a number in front of us, he told us it might not be what we had in mind but was what he thought might be fair, as far as we were concerned we were exactly on the same track. Brenda was not looking to break the bank but just to get a fair settlement that would put us in a position to replace our vehicle with a brand new one. Something neither one of us has never done is owned a "brand new" vehicle.

After four hours of the mediator going back and forth with offers and counter offers, we finally "settled" . Not anywhere even close to where we thought we would end up but Brenda just wanted it all to be over and after a good discussion with her lawyer and the mediator, we decided it would not be worth taking a chance at going to trial and getting less or even nothing at all! We can tell you this our dreams of owning our very first "brand new" vehicle were gone, just not going to happen with the settlement we got.

Ontario insurance laws totally blow by the way, you see, they, the insurance company your suing, gets the first $30,000.00 of any lawsuit filed against them. Yes, you read right, they get the first $30,000.00 as a "deductible". Then there are the lawyers fees, mediators fees, disbursements, and taxes. I guess you could actually end up owing them money!!. So we headed home licking our wounds and kicked up our feet for an hour until it was time to leave to see my oncologist to find out my fate next.

We met with my oncologist and after going over my entire history carefully reviewing all the drugs and radiation that I have had from day one, and looking at options available, the following was clear. I am dealing with a chronic recurring cancer and curative options have become few. My body has been through hell with all the treatments that I have had , and has no doubt been weakened. Now this does not mean we will not try something new or a trial that shows promise, but I too have to realize with all the toxicity that has gone through me there is only so much one can handle.
 
So, the question is this. Do we do something now, or do we do a watch and wait and do something when things have progressed to a more advanced state. I'm told the effect would be the same, and that if I did it now and put my body through all that chemo and what it does to you, then say, had to do it again in a short period of time it would most likely wear me down quicker. So why not wait and do it when it is more needed and save my strength to fight a battle that might be tougher.

Well, I know you are all scratching your heads and screaming WTF!! Yeah, so am I. I guess there are many arguments there, I know I had a few, but there is some sense in it all. I also have to note that my oncologist is backing what ever decision I make. Treatment now, treatment later, she will do either I just have to give the word. She is working on some things for me and is not throwing in the towel so to speak. She is actually looking at a clinical trail over in Detroit for me, and is going to do her best to get me enrolled in it. It is an SGN-35 trail and something she presented to me even before I showed her what I had come up with. I know of SGN-35 and it has showed great results to date and holds great promise. Now, just to get me enrolled.

She does want me prepared either way so I will be working more closely with my social worker at the cancer center to prepare for anything that my come of this. She also took the information I presented with regard to some other treatments that are holding great promise, and is going to be taking a closer look at those as well. So the ball you can say is in my court.
 
A lot has happened today, and it's a lot to digest. So we will do this, we will take some time to consider everything that is being proposed. I know I have a great group of you out there that are looking out for me as well. Brenda and I are fortunate to have you, and we consider each and everything that you put forth to us. We also present it to my team at the cancer center for consideration. But just for now we are going to take some time and think it all over while enjoying life and maybe even a well deserved vacation that has been put on hold too many times!

Hope and Faith

Tomorrow can be a great day for us or the bottom could fall out. I am fighting and struggling with myself to remain optimistic. Not easy. 

   
Tomorrow begins early in the lawyers office where Brenda has a mediation hearing with regard to the head-on collision she was in almost four years ago now. NOT her fault. I also truly believe that our current status of being vehicle less is the very fault of that accident. Our vehicle has had major electrical problems since, they were reported to our agent but discounted when it came to doing something about it. So this is stress number one for the day.  

Tomorrow afternoon I will be meeting with my medical oncologist to find out my fate. Again something I am trying to remain optimistic about, but in reality know where this is most likely going to go. I've been through this scenario with this oncologist last year at this time. The conversation centered around three treatment options, 1-ABVD, 2- GDP, 3- BEACOPP.

It was pretty much this exact time last year that I was diagnosed with NLPH and went over these options, however it was decided that being a stage 1 situation at that time radiation would give me the best odds for a curative effect. Of those chemo options numbers 1 & 3 were immediately taken off the table as they contained Adriamycin (Doxorubicin) of which I've had my lifetime dose already. That left GDP which at best I was told then would only keep it at bay. 

I have been doing research on what is new out there, my dilemma however is my treatment will be restricted to what is on Cancer Care Ontario's Drug Formulary list. A list I feel is in serious need of a complete overhaul. Click this for CCO's drug formulary for Hodgkin Lymphoma options. Something that was not included in the Ontario budget put forward today. Now mind you I have to refrain a bit from jumping all over something I don't have all the facts on, I am still reading the Ontario Cancer Plan 2011-2015 Click here. So until I finish that read I will refrain from completely trashing the system. 

So you can see my anxiety when I have two of the big three conglomerates that rule the world somewhat deciding our fate tomorrow the Insurance industry and the Pharmaceutical industry. Ativan has been good to me these past few days! Even so it has been an hour by hour struggle these past couple days to keep my composure.

Tomorrow will come and go for most people out there as just another day. For us, it is going to be one of the most important days of our lives, will it be memorable for the right reasons? Fate will decide that, thus hope and faith from our end is the best we can do to bring this coming day to a memorable close for the right reasons. 

Stay tuned for the follow up. Most likely just a face book mention until we dust ourselves off and I can get to writing a proper blog entry on here.

One heck of a week. But WARNING not for those with weak stomachs!

This week has been a one heck of a week for sure! Started out the beginning of the week researching treatment options for NLPH and found a few things of interest one in particular that stands out, and was passed on to me from our good friend at Patients Against Lymphoma, PAL. I will be presenting and discussing options with my medical oncologist on Wednesday when I see her.

Tuesday, I went out with Brenda and her friend Micky for dinner and a movie. That is where it gets interesting, we went to a local restaurant next to the movie theater for dinner. Once there and we seen the time, it was getting close to our show time, I asked if there was enough time for a burger, the waitress stated sure she could get it out to me in time to eat and make our movie time. During the show, The Adjustment Bureau. I started feeling ill, and by the time we got home I was getting sick to my stomach, and also had diarrhea.

I was only sick to my stomach a few times through the night and in the morning, but the diarrhea continued. By Wednesday early afternoon, Brenda went out and picked up some Imodium with hopes that would do the trick. No such luck, by Thursday afternoon I was on the phone to my oncologists office to see if they could prescribe something for it. My primary nurse called back to say that the Dr. wanted me to go to emerg or a clinic to be evaluated to make sure I was not getting dehydrated and find out what was wrong.

What was wrong was I went to emerg expecting not to wait too long and get evaluated. WRONG! I sat five hours before I finally walked out. After being there three hours they called me in to the triage room, but just for blood, and then sent me back to the waiting room.The waiting room was full with people hacking, coughing, and young children screaming their lungs out for the whole time. Mind you, I was wearing a mask for my own protection. After the blood work they left the shunt in for easy access if needed later.

Well there was no needing it later, five hours was enough, enough of people hacking and coughing, enough of kids screaming, and enough of watching people come in after me and get in and out while I still waited. So I approached the male nurse who had inserted the shunt and asked him to remove it I was leaving, he went to the desk and pulled a paper out of the paper tray. I knew it was a "leave against medical advice waiver" to sign. I told him he could put it right back I was signing nothing and should he not remove the shunt I'd take it out myself. He took it out, and I left ,not happy.

Well this morning I went to my GP's office for 9am when he opens. Surprise! he's not coming in today called in sick. Now what! I then proceeded to the Walk-in clinic next door and seen the Dr there. He was able to get my blood work result from the night before at the hospital, and all was fine with that. He prescribed some strong antibiotics and diarrhea medication, and a stool sample kit to send a stool ( I use that term loosely, literally! ha), to the lab, probably get results Monday, as I came home and went back to bed. So the kit did not get prepared in time to make it to the lab today before they closed. I'll drop it off tomorrow. In the meantime, I finally have be eating without it going directly through me but still feel in a weakened state.

Hopefully tomorrow is a better day.

Change of Direction in My Journey?

Well, I post today with news on my PET scan results. They are not encouraging, however not the worst. The Nodular Lymphocyte Predominate Hodgkin's is back as we already knew. The PET scan showed cancerous activity in both the left and right sides of my neck, as well as the mediastinal area of my chest, under my right arm, and in the abdomen. The activity indicated is early stage.

Right now we are just trying to wrap our heads around all of this. My radiation oncologist is now referring me back to my medical oncologist to look at chemo options for me. Radiation is no longer an option as the cancer is in multiple areas, and chemo options are limited and currently being looked at as a palliative measure. I do not accept this! and am researching options that have a possible curative effect. I will be seeing my medical oncologist in the next week or so to discuss the findings and look at options.

I have a great support team and look forward to hearing any info at all any of you out there can offer about options for multiple relapsed NLPH.  I have had my lifetime limit of Doxorubicin also known as Adriamycin, so any chemotherapy regimens with that in it are out of the question. I will be doing my own research as well as working with my team at the Windsor Regional Cancer Center. I may disagree with my team at the center at times but I still appreciate their care, and work closely with them.

Brenda and I have a lot on our plates right now and all of this is starting to become just too much to handle. I don't know where to turn next at times but I WILL find a way to get us through all of this.The one thing we do have in our favor is that we have a couple of great friends on Facebook, PAL (Patients Against Lymphoma) and family that we help us along the way.
 
So just to recap where I've been on this journey with hopes to find someone out there that has been where I have been here it is:

 1)  Dec. 2006,  diagnosed with squamous cell carcinoma of the left vocal chord. Treated with 25 rounds of   radiation.  

2)  Feb. 2007, diagnosed with T-cell histiocyte rich diffuse large B-cell non-Hodgkin's lymphoma. Treated with 8 cycles of CHOP-R chemotherapy.

3) Feb. 2008 Relapsed with the T-cell histiocyte diffuse large B-cell NHL. Treated this time with 9 cycles of GDP chemotherapy.

4) Dec. 2008 Underwent an Autologous stem cell / bone marrow transplant.

5) Jan. 2010 Diagnosed with stage I Nodular Lymphocyte Predominate Hodgkin's lymphoma. treated with 20 rounds of radiation.

6) Feb 2011 Relapsed with the Nodular Lymphocyte Predominate Hodgkin's lymphoma determined to be stage III after the PET scan I just had. Treatment plan to be discussed and decided at my next visit with my medical oncologist.

We are unsure of my direction right now, so if there is anyone at all out there that might have been through this I am listening. As I mentioned above my chemotherapy options are limited. If you can point me in the direction of something proven to obtain a long term remission please email me. Love and hugs to everyone no matter where you are in your journey. Thank you.
 

PET scan, Pet Peeve!

Well I finally had my PET scan, only 3 years later! What a journey it was to get there too. Friday it snowed here and all the way to London. Knowing the roads might be bad we left 2 hours early. Good thing! Roads had not even been plowed or salted yet. Conditions were treacherous at the least.

We arrived in London for my 11am appointment at 10:55am! That was leaving Windsor at 7am. Upon arrival they took my information and took me in right away. After doing my vitals, testing my sugar, and inserting a line, they took me to a room where the F-FDG isotope was injected. I was then put in a room to relax for one hour while the isotope had a chance to circulate through my body. After an hour, and a nap I must say, I heard a knock on the door, and it was time to go.

I was led to the room with the CT/PET scanner in it and jumped up on the bed and got strapped in. The whole CT/PET procedure once on the table was only twenty minutes. I was told I could sit up once we were done, but to wait while they looked things over. After about ten minutes the technician came back in the room and told me they needed to do another one of just my abdomen area. I had to wait a half hour before they could do it so I waited out in the hall with Brenda.

 When the came to get me for the second time, they told me I could have a coffee afterward so Brenda and her brother Chris, who drove for us by the way, headed off to get me a coffee as it was a bit of a walk to get there. They returned shortly after I had finished with the second scan. Ahhhh coffee! at last! Sure could have used one during the nail biting drive to get there. I was told I could leave and that my oncologist would have the results within  a week.

I must say it was a much better drive home. We headed back to Windsor after lunch in London. The road home was littered with jack knifed trucks and about twenty or so cars, vans, SUV's in the ditch! Once we got back to Windsor it was straight home and to bed for me I was just too wore out.Upon awaking an hour or so later, I had to make a call to the hospital here in Windsor to check on my mother. She was admitted Thursday night with heart trouble. There was no answer in her room when I called, however a short time later my brother had called to tell me she had been taken down to have an angioplasty procedure done and had just returned to her room but was still "out of it".

Sunday, when my brother and I got up to see her we found the she had, had three stints put in one of the arteries to the heart! Might explain why she was tired all the time. She was in good spirits and doing well, and looking forward to going home soon.

After leaving the hospital with my brother we did some running around and then on the way to bring me home a brake line on his Expedition blew! We were able to nurse it to a friend of his and put it in the garage where we found out that indeed it was the left rear brake line. We left the Expedition there he borrowed his friends car to bring me home.

Wow! what a week, our van out of commission and in the garage, t.v. going, takes 12 -15 trys to turn it on! Mom in hospital, rough trip to London. Then to top it all off the elevator in our building breaks down and is out of service from Saturday till today, Monday which meant if I went out for anything it was a six story walk on the stairs. Just to top it off there is nothing more the garage where my van is can do. They can't find the problem which is electrical and most likely tied to the factory alarm which keeps shutting down the van. Dealer wants $130.00 an hour to find it! NOT!  How much more I can handle is in question. I have pretty much gave up on our van at this point. Brenda is handling that right now. So what is next? who knows at this point.

 What I do know is this. PET scan has once again become my pet peeve! You see, a couple of years ago I was on a campaign writing different Government agencies about the tight restrictions put on getting a PET scan in the province of Ontario. At the time I wrote several letters. The agencies I wrote to included, Cancer Care Ontario, the Ontario Hospital Insurance Plan (OHIP), the Ontario Ombudsman, Andre Marin, and Care Imaging. The hoops you have to qualify to jump through to get a PET scan are pretty restrictive, here is the link to PET Scans Ontario and the criteria: https://www.petscansontario.ca/about/

So now that I have my PET out of the way, and awaiting results I will be resuming the letter writing once again with regard to the restrictions on getting a PET scan. After a conversation with one of the technicians working with me in London I have found that most oncologists are reluctant to even order a PET because of all the red tape to get one. The value of a PET has been proven in most every province in Canada with the exception of Ontario. It is also the standard in the U.S.! So lots of writing it will be. Besides with the black cloud that is following me and all that has gone wrong, I need the distraction of writing, which is what this blog is for as well, but I'm on system overload right now.

Get over it?

It's been a long 3 weeks since I heard from my Oncologist and that he wanted to send me for a PET scan. After the initial shock of him even ordering one wore off, the waiting game began.

The usual, stress of waiting for the call with the appointment, was accompanied by the stress of what is going on within while waiting. I know only too well how fast these things may or may not go. Has it spread?, has it gotten any bigger?, are any other areas now involved? Has it metastasized to any organs?

Well not that those questions were stress enough, our van had to develop problems which began Friday night and only got worse. So it is in the shop as I write, I am awaiting it's diagnosis and cost to repair! Been there two days so far and only a guess on the problem. When the mechanic test drove it, it was fine! Fine? Being stuck in the wrong lane during rush hour on a Friday night then again on Saturday, with a vehicle that just "quit" and won't start is NOT FINE. So the jury is still out on that one. 

These worries have become common place for us, and no, you don't get used to them. I guess it should be relatively easy though, because I recently had someone tell me, " your not the only one to ever get cancer, so get over it". Nice huh.  Well, I did not even respond to that as it would have been a complete waste of time. Time I would never get back, therefore time I would much rather spend on more positive things.

I decided to take things into my own hands about worrying over the scan,  and made a phone call to the hospital in London, ON that I was being referred to for the PET scan. I wanted to know what the status of the application to the clinical trial was, as that is what I was referred to in order to get a scan covered by OHIP ( Ontario Hospital Insurance Plan). I was surprised to find out that my application for the trial that was submitted by my Oncologist was rejected. I didn't qualify! Before I had a chance to explode as I was ready to do, the receptionist on the other end of the phone informed me that my Oncologist had already submitted a new request, this time through the Ontario PET Access Program. She also informed me she would call PET Scan Ontario to check on the status of the application for me.

The receptionist, I believe her name was Lindsay, called me back within minutes to inform me that due to the late hour, she got the answering service and promised to follow up in the morning and get back to me on the status of the application. This morning I also contacted my Oncologists office to see what they might have heard about the request if anything, I had to leave a message which I did. Just before lunch time today Lindsay called my from London with the news. My application for the PET scan under the PET Access Program had been accepted and that she had an opening this Friday and would that be OK with me. I told her Friday would be fine and thanked her for everything she had done for me. Shortly thereafter my Oncologists office called back, I informed them London had just called me with the approval to have the scan and my Oncologists nurse confirmed the same as they had just received a copy of the fax confirming it.

So now we move toward the next step of this journey. Once my Oncologist receives the report from the PET scan we will move forward with a treatment plan. A lot is riding on this scan, so the worries are not over just yet. What will it show? Will it be stage 1? or is there more than one area involved, if you remember a post or two back I mentioned that the Gallium scan I had in January did not show activity in the nodes in my chest
(which a biopsy proved wrong) and did show activity in the upper right neck just beside my ear.

Now that I know the Gallium proved to be wrong on the chest nodes, is it, or isn't it, right or wrong about the activity in the neck? Thus the PET and the outcome of the results riding on it! So lots to worry about yet, but then again, I'm "not the only one to get cancer", so I should "get over it" right?

Love and Hugs to everyone in their journey where ever that may be.

Tim, xxx

The Waiting Game, A recent article from my local newspaper.

 Wait times frustrate cancer patients in Windsor area ,

By Sonja Puzic, Windsor Star 

 WINDSOR, Ont. -- For weeks, Patricia Grubb sat by the phone, nervously waiting for her cancer treatment to begin.
Despite being diagnosed with advanced colon cancer, an entire month passed between the senior's surgery and her first cycle of radiation therapy at the Windsor Regional Cancer Centre.
The Essex woman, who relied on friends to drive her to medical appointments, fretted about how the wait would affect her chances of survival.

"I'm not happy about it," she said last fall.
"I mean, OK, fine, I figure I'm going on 78, but I've always been very, very active.... I've always been pretty healthy. I've still got years to live."
Even though improvements have been made in Windsor and across Ontario when it comes to wait times for cancer surgeries and treatment, many targets are still not being met.
Just over 55 per cent of patients provincewide waiting for chemotherapy saw an oncologist within the recommended two weeks, according to the latest available data on Cancer Care Ontario's website. Fewer than 40 per cent received systemic cancer treatment -- which includes chemotherapy and hormone therapy -- within the recommended time.
At the renowned Barbara Ann Karmanos Cancer Institute in Detroit, the goal is to see patients within a week of referral, said Dr. Shirish Gadgeel, who specializes in lung and chest wall cancers.
"I've heard of people (in Canada) waiting six or seven weeks to see an oncologist or get treatment," said Gadgeel, who has treated a number of Canadian patients and discussed cases with his Canadian counterparts. "To me, that's unfathomable."
When the Ontario figures are broken down by specific types of cancer, there are obvious disparities. For example, nearly 80 per cent of malignancies affecting the central nervous system and close to 70 per cent of head and neck cancers are checked out within 14 days. But breast and lung cancers don't even hit the 60 per cent mark and fewer than 50 per cent of people with skin cancer are seen within the target time.
The president and CEO of Cancer Care Ontario, Terrence Sullivan, has admitted that wait times continue to be a problem, despite huge efforts to improve them.
"We need to do a better job," he has said.
When it comes to radiation treatment wait times, the province does a better job of meeting CCO targets. Close to 70 per cent of patients are currently getting a consultation with an oncologist within two weeks of referral and 80 per cent are getting treatment within the same time period after being deemed "ready to treat."
At the Windsor Regional Cancer Centre, more than 80 per cent of patients referred for radiation treatment are seen for a consultation within the target of 14 days. But only about 40 per cent actually begin the treatment within the target time. About 80 per cent undergo cancer surgery within CCO's target. Cancer surgeries are done within 28 days, depending on priority. Windsor Regional Hospital CEO David Musyj says most urgent surgeries are done within 24 or 48 hours.
"In Windsor, we've had some challenges either because of manpower issues -- getting specialists in the field of oncology is sometimes not easy -- or because we have to work within the guidelines of our budget," said  Dr. Ken Schneider, chief of oncology at the Windsor cancer centre.
Gauging the impact of waiting more than two weeks to see an oncologist or start cancer treatment is difficult, cancer experts say.
"There is no universal answer to that because every patient, every tumour, every malignancy is different," said Windsor oncologist and researcher Dr. Caroline Hamm.
Dr. Patricia LoRusso, an experienced oncologist at Karmanos, agrees.
"You can't generalize it at all," she said. "But if the cancer is in the early stages, waiting a few weeks in most cases does not translate to a poorer outcome."
Grubb was diagnosed with Stage 3 colon cancer after her first colonoscopy in July. She underwent a colostomy -- a surgical procedure in which the colon is cut to divert excrement -- on Aug. 13.
She didn't begin her prescribed cycle of 28 radiation and chemo treatments until Sept. 13.
"No one ever said why ... they just couldn't fit me in," she said.
But the treatments managed to shrink the tumour in her colon enough to allow a surgeon to remove it safely last week. Grubb is now recovering from surgery at Hotel-Dieu Grace Hospital.
"I had to wait ... but I guess it worked," she said Sunday.
More rounds of chemo await Grubb, but she's doing her best to remain optimistic.
"I've just got to keep my fingers crossed and keep going to church."
The philosophy behind treating cancer patients may differ in Canada and the United States, but the countries' cancer survival rates are comparable.
According to latest available data, the five-year relative survival rate for lung cancer -- which has among the poorest outcomes because it's often caught in late stages and is difficult to treat -- is about 16 per cent in both the U.S. and Ontario. The rate for prostate cancer is 99 per cent in the U.S. and 97 in Ontario. For breast cancer it's 90 per cent in the U.S. and almost 90 per cent in Ontario. In the U.S., the survival rate for cancers of the colon and rectum is 66 per cent, while in Ontario the survival rate for colon cancer is 65 per cent.
A recently released international study shows that Ontario has among the best cancer survival rates among 12 jurisdictions across six countries, including the U.S., England, Australia, Sweden and Denmark. For colorectal cancer survival, Ontario ranked first in Canada and third among the six countries. It ranked second overall when it comes to lung and ovarian cancer survival rates.
Windsor's proximity to reputable U.S. teaching hospitals and Karmanos exacerbates local frustrations because patients here are bombarded with stories and advertisements touting immediate test results, expedient surgeries and no lineups for MRIs and CT scans on the other side of the border.
Local health care officials point out that comparing wait times in Ontario and the U.S. is like comparing apples to oranges.
Canada's universal health care system gives everyone access to services, whether it's at a walk-in clinic or a cancer centre. Across the border, those without health insurance, medicare or a credit card don't even get to see an oncologist.
"If you go over to Henry Ford (Hospital) today with a credit card, you will get an MRI today, no problem -- whether you need it or not," said Musyj. "But you have to keep it in perspective. There are no waits in (Detroit hospitals) because a large chunk of the population doesn't have coverage and can't get care.
"In our system, wait times are our weakness and access is the strength while the opposite is true in the U.S."

© Copyright (c) The Windsor Star

Read more: http://www.windsorstar.com/health/Wait+times+frustrate+cancer+patients+Windsor+area/4084690/story.html#ixzz1Fd53KZjm

And for me, yes, I am still waiting. Waiting for my PET scan in London