Tuesday, December 7, 2010

Another year older, and another year wiser

Well, here it is December 8th once again (yeah I know it's only the 7th) and I will be turning 52 this year. My how the years pass, I can remember only four years ago, being diagnosed with a cancer that gave me two and a half to five year survival odds if you were to listen to the numbers, and saying I just wanted to make it to my 50th birthday. Which I did, I was in the hospital in London at the time undergoing a bone marrow/stem cell transplant, but it made it! Now what? .Thus the wiser part, they are only numbers and if you listen to them and let them dictate you, you will end up proving them right! DON'T LISTEN TO THE NUMBERS! I did however set the bar a little higher and am shooting for fifty five now! I set the bar higher again when I get there but for now will take it a day at a time as it comes.

Yes, I am a year older and really do feel the age creeping up on me, and having gone through all I've been through that is a "normal" feeling. I had someone put it to me this way once. As a cancer patient you can add about twenty years to the way you feel. So let's see then, that makes me 52 going on 82! Yeah, that seems just about right some days. I could sit here and spend hours writing and whining about how I feel but what would that accomplish other than wasted time. I do allow myself days here and there to complain and whine about how I feel, but I don't let it take over every day, hour and minute of my life.

Most of you who really know me, have most likely seen a transformation with me and how I interact and deal with things and people now. Having cancer and doing the battle changes you in ways that are just to hard to describe to people. Those of you in the fight and even some of the caregivers in the fight "get it". Live is too short people and it can be taken from you in an instant. When you "get it" you make life a priority, the little things make a difference, being kind to others makes a difference, and it makes you feel good too when you help another human being. Your outlook becomes different, the material things are not important, nice to have, but not important. Being comfortable, eliminating all your stresses, giving back in some form or another, those are the things that will get you through the battle.

Brenda just asked me today, "what do you want for your birthday", I thought for a second the told her, I really don't NEED anything. What do I WANT? Well, my answer was let's go to a show this afternoon. We have to take in an early one because we have Brenda's weight loss surgery group Christmas party tonight in place of the regular monthly meeting. The only real thing I would like, but don't necessarily need....., a birthday cake! who doesn't like cake.

So to sum it all up for today, go out and make a difference to/for someone, don't matter who it is, even better if it's a perfect stranger. Pay it forward is the greatest gift you could ever give yourself. Does it work? absolutely it does I've recently had some good deeds come back to me for things I've done for other people many years ago. So you may not see the return of your deed for years or for that matter, ever! Does it matter? Nope, not at all, just feels good doing it, and if it comes back to you that is fine too, but not important.

Well that's enough babbling from me, probably not even making sense with the way it came out but if you make a difference in someones life today then I've accomplished something.

Wishing everyone a great day no matter where you are in your journey's, and thoughts, prayers, and good vibes, to our friend Cathy Fisher Morris who is now on the better side of the bone marrow/stem cell transplant she is currently undergoing.

Tim, xxx

Saturday, December 4, 2010

The Latest Ramblings and Such.

This is just an update of the latest that's been going on. Since my six month check-up with Dr. Kanjeekal I have gotten a call from the Diagnostic Imaging Dept. at Windsor Regional Hospital for my C/T scan appointment date and times. I have made it through the "scanxiety" days before the scan, and now await the results, could be a week or so. I do not anticipate any surprises, but with these things one can never tell.

So now I go through all the "normal" worries and thoughts while I wait for the results, Karla, Dr. Kanjeekal's nurse told me to call in a week after the scan if I have not heard anything by then. I would think that if my phone does not ring in the next week with a call from them, that would mean I am in the clear.



Well, we've made the decision this year to dig out and assemble all the Christmas decorations and tree. We have not had anything up other than the small ceramic tree since I got ill in 2006

My lovely wife Brenda and I posing for our annual Christmas Card photo in Santa's Castle
 Now that things are finally in a "holding" pattern and there are no treatments or signs of the dreaded disease, the mood is there to celebrate and enjoy the season. I've done up all the Christmas cards and they've been sent out, so if you usually receive one from us it's on the way!

Also, would you keep my good friend Cathy Fisher Morris in your thoughts and prayers, she is currently undergoing her Stem cell transplant in St. Louis. She's just over a week in and looking for her white blood cell count to start rising again.

Tuesday, November 23, 2010

The latest from Cancer Care Ontario

Cancer Care Ontario releases action plan to improve the patient experience

Progress being made, but more to be done for the 400,000 Ontarians living with cancer in 2015

November 23, 2010 @ 02:00PM
TORONTO, ON - The third edition of the Ontario Cancer Plan (OCP) ensures our cancer system serves the changing and growing needs of Ontarians. The Cancer Plan outlines priorities for cancer services, sets a course to transform cancer services from the patient perspective, and is driven by a commitment to quality across the cancer journey – from prevention to survivorship or palliative care – as the most effective way to manage cancer.

The release of the original Ontario Cancer Plan in 2004, was the first multi-year cancer plan developed in Canada.

“We have made tremendous gains in the fight against cancer since the first Ontario Cancer Plan,” said the Honourable Deb Matthews, Minister of Health and Long-Term Care. “The Ontario Government has expanded cancer centres and is now publicly reporting wait times for cancer surgery, radiation and chemotherapy. We have made great progress in reducing wait times for cancer patients. We will continue to work side by side with Cancer Care Ontario and health providers on the front lines to prevent and lessen the toll of cancer.”

“For the past six years we have expanded capacity and improved access to high quality cancer services to meet the growing needs of Ontarians,” said Terrence Sullivan, president and CEO, Cancer Care Ontario. “With this strong foundation, we are now focusing more on meeting the needs of patients and increasing access to new developments in personalized medicine.”

“We have listened and talked directly to patients, doctors, nurses and our partners in cancer care. We know patients want to understand and have more control over their own care and more information. This will not only help patients, it will help us improve outcomes overall,” said Michael Sherar, vice president, Planning and Regional Programs, Cancer Care Ontario.

By 2015:
  • Every person in Ontario will be able to calculate their personal risk for developing cancer and be linked to resources to help reduce their risk.
  • Primary care providers will be equipped with on-line tools to help people decrease their risk of cancer.
  • Every cancer patient in Ontario will have:
    • Access to more information tools, online and hands-on assistance in the form of Patient Navigators,
    • The chance to give feedback on their experience with cancer, and
    • Their interests represented through a Patient Advisory Council.
  • All screening programs will be integrated and supported by one electronic system, automatically sending invitations to participate and reminders to screen at the right time. An Aboriginal Patient Navigator program will exist to provide culturally sensitive assistance for Aboriginal patients.
  • The cancer journey from the patient’s perspective for the most common types of cancer will be mapped to identify and address gaps and ensure patients are treated according to the best evidence and improve the performance of our Regional Cancer Programs.
  • The cancer system will be equipped to quickly determine which new cancer therapies are the most effective and ensure these therapies are introduced and made available to patients. This process will be informed by the best available research and researchers.

The Plan builds on the successes of the first two cancer plans. These have driven tremendous strides in Ontario’s cancer program, including:
  • Increasing the use of evidence to develop standards and guidelines,
  • Establishing the 14 Regional Cancer Programs,
  • Opening four new cancer centres in:
    • Kitchener (Grand River Regional Cancer Centre)
    • Mississauga (Carlo Fidani Peel Regional Cancer Centre)  
    • Oshawa (R.S. McLaughlin Durham Regional Cancer Centre)
    • Newmarket (Stronach Regional Cancer Centre)
  • Expanding centres in London, Sudbury, Hamilton, and Ottawa at the  Queensway Carleton Hospital,
  • Reducing wait times, particularly in surgery and radiation,
  • Consolidating complex surgeries (thoracic and HPB),
  • Launching ColonCancerCheck (CCC) to increase screening for colorectal cancer, and the Smoke Free Ontario Strategy, and
  • Beginning the Ontario Health Study (OHS).

The strategic priorities outlined in the 2011-2015 Plan will build on these successes, helping  people decrease their risk of developing cancer, reducing the impact of cancer through screening and early detection, ensuring access to the right treatment at the right time and strengthening Ontario’s ability to improve cancer control through research.

Cancer Care Ontario continually improves cancer services so that fewer people get cancer and patients receive better care.

Just below is the link to the actual Social Media Release from Cancer Care Ontario, you can see the release in it's entirety here,
http://tinyurl.com/27tysfh

Sunday, November 21, 2010

Make Bexxar Accessible! petition UPDATE:

After submitting the petition to GSK, the VP to whom it was sent responded with the suggestion that we have a conference call.  On it were four GSK representatives, and from the lymphoma community, Dr. Mark Kaminski, co-developer of Bexxar, Karl Schwartz, President of Patients Against Lymphoma (PAL), Liz McMillian, PAL's Facebook guru, and myself.  Following is Karl's summary which he has posted to lymphoma forums and I share here.  We will continue to monitor this situation and do what we can to make certain that Bexxar remains a viable option for patients. 





We felt that the meeting was productive in that we received no "push back" on our concerns ... That is, we felt that our concerns were listened to and considered valid, which were:

1) That the policy change will delay use of Bexxar up to a month - depending on if the need for the drug arises during distribution periods within the month. We noted that experts share our expectation and concern: that usage of Bexxar will decrease further - and that the following expert remark is widely held:
"So yes it will reduce use since some pts whose schedule doesn't fit will have to get something else."
... And that trial enrollment will also slow down as centers will not be able to treat as many patients per month in the Bexxar-based protocols (this was confirmed by a contact at Fred Hutch)
2) That decreased patient access to Bexxar because of a new policy - along with the perception of difficulties in getting access - will contribute further to decreased usage of Bexxar - leading to a downward spiral – leading to the extinction of a vital drug.
3) That Bexxar has not been marketed sufficiently, ever.
We disagreed that FDA is the reason for GSK's inability to market Bexxar sufficiently, citing that there is no regulation prohibiting distribution of journal reports - even for off-label use.

I offered to assist GSK in these matters at FDA.
4) That Bexxar is a unique drug - in that it has the longest follow up data and that all of the data strongly and consistently suggests curative potential, even if no one study proves this definitively.
5) That patients expect GSK to recommit to Bexxar by studying it further, by marketing it appropriately, by pressing for reimbursement reform, and by training more physicians in its administration.
Betsy offered to assist in helping with reimbursement reform at CMS, and asked that GSK provide experts to educate patients about the drug at education forums.
Liz made it plain that oncologists, investigators, and patients were not adequately consulted about the policy change - at least the experts we consulted in this matter.
Dr. Kaminski provided many expert perspectives, such as on the outcome data, and remarked that even the thought leaders in the lymphoma community are failing to recognize the importance of it - particularly when you consider the length of the follow up - 10 years and more.
So what's next?
We will follow up with GSK and ask that they answer our concerns and provide evidence of a change in policy and marketing commitment.
We cannot force a corporation to maintain a drug that is losing money, but we can show GSK that there will be a public relations price to pay for giving up on a unique and vital drug too soon - one that patients helped to bring to the clinic by participation in clinical trials.
(Drugs, unlike cars and toothpaste products, can provide unique societal benefits and require not just financial risks by shareholders - but also require that individuals take substantial risks when the drug is administered into our veins when studied.)
Will that be enough to change corporate policy? We don't know.
All the best,

Karl Schwartz
President Patients Against Lymphoma
www.lymphomation.org

Karl's open letter to GSK sent with petition:
http://www.facebook.com/notes.php?drafts&id=1379719365#!/note.php?note_id=497928551998

6 Month check-up.

Well, once again it was time for my six month check-up with Dr. Kanjeekal, my medical oncologist at the cancer center. Went over the past six months with Karla her nurse and brought her up to speed on all that was going on. Only three issues really that were on my mind and nagging at me for answers. 1. Have been having bowel problems lately and not really sure what is going on, or not going on! there lately. 2. This strange feeling and occasional pain that runs alongside the right side of my nose up to my right eye area, headaches on that side once and a while too. and finally 3. A lump!, yes, a very small one, but a lump none the less on the right side of my neck. I've been writing it off as just some scar tissue from previous biopsy surgeries in that area. However it's "new" since my last visit with Dr. Schneider, so I needed to point it out.

Karla left the examining room with my list of issues, or,as I call them, lumps and bumps reports to go over with the Dr. before she comes in. I must also point out that I was early for my appointment and had fully expected to be waiting a while, but was pleasantly surprised when my "pager" went off indicating it was my turn after only 10-15 minutes. The Windsor Regional Cancer Center using a paging system to notify patients of their turn to see their Dr. This system was implemented last year in order to protect the confidentiality of patients who did not want their names called in public. This system was also being used at the London Health Sciences Center in London, ON. when I was going up there for my pre bone marrow transplant testing.

It was only a matter of minutes before Dr. Kanjeekal came into the examining room. She asked what had been going on and what exactly were the issues I had mentioned to Karla. I filled her in on all the details of what had been going on with the things I mentioned. She went on to do the normal "poking and prodding" of all the key areas us lymphoma patients have had issues with, neck, armpits, abdomen, and in particular the area of the spleen, and groin. Nothing remarkable for her to note. After explaining the thing going on alongside my nose up to my eye, she did not think it was anything important at this stage and just said to keep watching it, the same thing for the "lump" on the right side of the neck. Keep an eye on it and to call in immediately if I think it's getting any bigger at all, she feels it is just scar tissue from the past surgery in that area. She then said it had been some time since my last C/T's of these areas and that it would rule out anything going on related to the bowel problems. My last few scans were only from the neck up, and we were already aware there was black empty space there! She asked to give her a moment and she excused herself form  the room. Returning in just a few moments she had my next appointment card for me and a slip for a C/T of the chest, abdomen and groin. The C/T was just being set up as precautionary and routine.

The Dr. also took a look at my blood work results which were in, I had gone to the lab and had blood work drawn, as I was due for my three month blood work draw anyway and figured it would be in Dr. Kanjeekal's office by the time I got up there, as I had an earlier appointment with my social worker at the center.  My blood work was all fine. So other than a call to wait on for the C/T appointment, I will see Dr. Kanjeekal again in six months.

So folks nothing significant to report at this time, however I will post results of  C/T after it is done. Just to mention, I am still dealing with all the other side effects from all of the chemo and radiation treatments, the CIPN, the Chemo Brain, the weakness, the tiredness. which have all become "normal" parts of my daily life now, and it's been a struggle at times learning to deal with them all and accepting they are part of my daily life now. Not whining or complaining here, just stating what is going on. So until next time, hugs to all no matter where you are in your life's journey.

Sunday, November 7, 2010

Make Bexxar Accessible! Please take a moment to sign this petition.

I have recently been made aware of a situation by a personal friend and fellow survivor that requires my and everyone else's help that is concerned about non-Hodgkin lymphoma and the medications that may put you or a loved one into a long term remission.

Please take a moment to click on the link below and sign the petition.
http://www.thepetitionsite.com/1/bexxar/

Also, if your on Facebook, take a moment to "Like" and join the Supporters of Radioimmunotherapy for non-Hodgkin Lymphoma page and leave your comments.
http://www.facebook.com/pages/Supporters-of-Radioimmunotherapy-for-non-Hodgkin-Lymphoma/143127185734905

Thank you in advance to each and everyone of you who sign the petition and join in on the movement to keep the world aware. Now find below the message I received from my friend asking for our help.


From a friend, and fellow NHL survivor :

This is WAY past my bedtime but there’s a reason. Some of you remember the crisis RIT faced at the end of 2007 when CMS (Centers for Medicare and Medicaid Services) threatened to slash payment for both Bexxar and Zevalin and PAL and I were involved in a grassroots effort that help save it. Well, here we are three years later and RIT faces another crisis that will further reduce patient access and have a serious impact on clinical trials. Please read this and I hope you’ll sign another petition (sorry about these petitions lately!). Here’s the deal.

I just learned yesterday that in a letter to health care providers, GlaxoSmithKline (GSK), Bexxar’s manufacturer, announced its decision to reduce production and availability of Bexxar, effective November 1, 2010, saying that “the infrequent demand for BEXXAR, coupled with its significant production costs, meant that our on-demand service would not be sustainable.” It will still be available, but only on certain limited dates which will obviously have a serious impact on patients and on clinical trials.

The reasons for the “infrequent demand” of Bexxar and Zevalin have been well documented and discussed. However, to my knowledge, no mention has ever been made that GSK shares some responsibility for the underutilization of Bexxar because the company has made no recent effort to market the drug or to educate physicians and patients about the treatment. Spectrum, Zevalin’s manufacturer, has done a much better job. Its 3rd quarter sales increased 64% over the same period last year.

So why should we care about Bexxar? As we all know, Rituxan is almost always combined with chemotherapy and it is frequently used for maintenance, and I have long wondered what might happen if we no longer respond to Rituxan based therapies. In recent interviews with Dr. Mark Kaminski and Dr. Christopher Flowers, both stated that Rituxan-resistant lymphoma cells can be created in the lab. Dr. Kaminski elaborated when I asked him, “Since Rituxan is a component of Zevalin, does anybody really know how effective RIT is if someone becomes refractory….?”

His answer: “…this is not a direct comparative trial, but just looking at the data side by side – the number of complete responders to Bexxar was more than double that of those to Zevalin in this particular situation, i.e., Rituximab refractory patients. And it might be because Bexxar uses a different antibody, a different CD-20 than Zevalin. Zevalin is essentially radiolabeled Rituxan. Bexxar is binding to a different part of the protein and it evokes a different immunological response than what Rituxan does. And so to me, it makes more sense to try a different antibody with radioimmunotherapy than repeating but just adding a little radiation with Zevalin in those particular instances.”

In other words, because the antibody in Bexxar is different and attaches to a different part of CD20 than Rituxan, Bexxar may work when Rituxan based therapies don’t – and we have to remember that Rituxan is part of Zevalin. Therefore, if we lose Bexxar, we lose an option – and I don’t think anybody is willing to give up any one of our options.

Where does Bexxar really stand? Supposedly, GSK’s decision to limit production is final, although there may be a chance the company will reconsider. A group of lymphoma specialists, led by Dr. Kaminski, is banding together to present scientific evidence to the company’s top management in hopes of convincing the company to change its mind. After a whirlwind of strategizing, this group of doctors is our best hope and I believe that it’s appropriate to let them take the lead, especially since they already have access to GSK and its ear. I think it would only interfere if lots of people start bombarding – plus we don’t really know who to bombard.

However, to supplement the docs’ argument, we patients/survivors/friends/family members can ask GSK to keep Bexxar accessible by signing a petition at http://www.thepetitionsite.com/1/bexxar/ which was created by Supporters of Radioimmunotherapy for non-Hodgkin Lymphoma (me). The docs will deliver the petition to GSK. If you have questions about it, let me know. Also, although the petition site’s goal says 500, the real goal is get 1,000 signatures in the next week if that’s even remotely possible. So I hope you’ll sign and share with family and friends – every signature will count. Same with the Supporters FB page – it needs to rack up friends fast so I hope you’ll like and share: http://www.facebook.com/pages/Supporters-of-Radioimmunotherapy-for-non-Hodgkin-Lymphoma/143127185734905


So as you can see this is very important. And to close with a couple of quotes from GlaxoSmithKline USA, which contradict's this move to limit production of Bexxar!


"GSK Oncology is dedicated to producing innovations in cancer that will make profound differences in the lives of patients. Through GSK’s revolutionary ‘bench to bedside’ approach, we are transforming the way treatments are discovered and developed, resulting in one of the most robust pipelines in the oncology sector. Our worldwide research in oncology includes collaborations with more than 160 cancer centers. GSK is closing in on cancer from all sides with a new generation of patient focused cancer treatments in prevention, supportive care, chemotherapy, and targeted therapies."

"GlaxoSmithKline one of the world’s leading research-based pharmaceutical and healthcare companies – is committed to improving the quality of human life by enabling people to do more, feel better, and live longer. For further information please visit www.gsk.com."

Just not seeing the commitment here on your part GSK! Stop this action to limit the production of Bexxar now!

Saturday, October 16, 2010

Sleep, Ulcer, and the Wall

Well looks like I'm back to trying a new sleep aid, I was taking Triazolam for the past six months or so which worked just fine for me. I was able to get a full nights rest while taking it, no up and down or tossing and turning all night long. Apparently the pharmacy can no longer get it!! Hmmm, so my GP has now prescribed Temazepam 30mg.  for my sleep problem. I sure hope it works, I've done relaxation techniques, regular daily exercise, (morning mall walking), and still have problems getting a solid nights sleep. I even tried to take part in a sleep study for cancer patients that was being conducted at the University of Calgary, but would have had to go there for two weeks to take part. Not something I can do on a pittance of a disability pension. So tonight starts a new journey with a new med, so cheers to a good nights sleep!


Stomach disease or trauma


The results are in on Brenda's scope she had done on Tuesday and it appears that all the episodes she's been having off and on with the extreme pain is an ulcer. She has been put on a double dose of Prevacid for a week to give a rapid start to the healing process then she will be on 1 pill a day after the first week. We are hoping this does the trick. As painful as it is for me to watch her go through the attacks, I can't even imagine how painful it is for her. Also a list of foods to avoid for now as well, spicy and acidy things. She will be having a follow up in a couple of weeks.

THE WALL! 





"Ticking away the moments that make up a dull day,
fritter and waste the hours in an off had way"
,Ok, wrong song, right songwriter! But that is where I am at right now waiting for Roger Waters, THE WALL, to hit the Palace of Auburn Hills. This is not only a "pay it forward" moment for a good deed I did many years ago for one of Brenda's uncle's who gave us the tickets as a gift for that deed, but it is also a life long dream to see this live! A bucket list item scratched off so to speak. This is a concert of historic meaning for any Pink Floyd / Roger Waters fan.
 

There is only one more thing that would not only be the icing on the cake, but another historic moment. That is that David Gilmour makes this date, the day he pays back Roger, by doing Comfortably Numb, in exchange for Roger having done "To Know Him is to Love Him" with David at the Hoping Foundation Event earlier this year. If only.................., now that would really make this old man's dreams come true!

Saturday, October 9, 2010

Battle of the Ribbons, Pink Envy.

I watched in envy this morning as the walkers for the American Cancer Society's "Making Strides Against Breast Cancer" event made their way around Belle Isle Mi. for their 5 mile walk to raise awareness and funds for their cause. It looked liked they had a great turn out from what I seen from the Canadian side of the river. I tried to get a couple good pictures but with my cheap camera I could not zoom in clear enough to get a good one so I just grabbed one from an article about the event.

It is always nice to see a big turn out for events such as this one. The only big one here locally that I have attended is the Canadian Cancer Society's Relay for Life event. They also have the annual Dragon Boats for the Cure race which again is a breast cancer fund raising event. This was a Windsor event but has moved to the Town of Tecumseh now and seems to be even bigger!

Like I said I watch in envy how these events for the cure of breast cancer get bigger and bigger each year. Don't get me wrong, I think this is fantastic how successful these events are at raising awareness and funds, which in most cases stays local where the events are held.

My point, I guess, is I wish there was such and event here in Windsor for Lymphoma Awareness and to raise funds. I have on a couple of occasions now contacted the Lymphoma Foundation of Canada to inquire as to starting a local chapter here in Windsor. I am sure I could do some of the work to get it going but I would definitely need help with it. It seems they have gone through a few personnel changes here in Ontario so I'm guessing my inquiries have gotten lost in the shuffle. So, time once again to knock on their door, so to speak, to try and get things going. I would love to get an annual event for Lymphoma here in Windsor and a Chapter to keep things going year round. I have many, too many, idea's running around in my mind. Time to make an effort to get busy and get things going and see where I get with them. Wish me luck!
Wishing everyone well in their journey's.



Friday, October 8, 2010

Dear Doctor and the doctor's response.


The following is a letter that was written by a fellow survivor, friend, and author Betsy de Parry, this letter is in my opinion one of the best written letters a cancer survivor could write to their doctor. Shortly after the letter was published in Betsy's cololm The Roller Coaster Chronicles,Life and Cancer, on Ann Arbor.com she got the response that follows her letter on here by Dr. Gary Hammer, world-renowned adrenal cancer specialist at the University of Michigan Comprehensive Cancer Center.


I fully intend on printing and giving a copy of Betsy's letter to all of the doctors that are part of my team, so here they are, Enjoy!


Dear Doctor,

Here we are, you and me, our lives connected by cancer. My cancer. Under the circumstances, I’m really glad to have you in my life, and I want our relationship to be very, very long and very, very good, but since I can’t find a manual on how to build our relationship, I’m guessing that, like any good one, it has to start with trust.

But trust takes time, which we don’t have, so I have some things to ask and say.

First, just what am I trusting in you? That you’re brilliant, cool under pressure, experienced, knowledgable and up-to-date on the latest miracles of modern science for my type of cancer? That you won’t be too proud to call in colleagues or send me to them if you get stumped or run out of ideas? That you’ll always be honest with me no matter how hard it is for you or me? That you’ll help me set realistic expectations without ever stealing my hope? That you’ll be my strength if I’m too weak to be strong? That you won’t give up on me if the going gets rough and it looks like I won’t be one of your success stories?

Do you understand that it’s hard enough to put my trust in you, but even harder to put blind faith in the people I can’t see but on whom you rely? Like the pathologists who look at tiny pieces of me or the radiologists who interpret pictures of my innards. You may know their credentials, but I don't.

I get that you went to medical school to learn how to identify and treat disease, not to listen to me blather on about how cancer is more than a physical problem. That it’s really personal. That it sweeps us patients and our families into a tempest of confusion, fear, frustration, vulnerability and isolation from the healthy world. I’ll try very hard to check those emotions at the door when you and I visit, but if they creep into the examining room, is it too much to ask you to recognize that I’m not just a collection of cells that needs to be fixed while you work to fix my wayward cells?

And Doc, surely you know that your sophisticated equipment can’t see the parts of me that make me who I am. And I am not my cancer. No machine can identify the parts that make me love and laugh. And none can calculate how very afraid I am. Of what lies ahead. Of dying. Of pain. Of medical procedures. And of becoming a number in a bureaucracy where no one will care whether I end up running a marathon or being turned over in a bed like a piece of meat on a rotisserie. Could you occasionally share my fear and shore up my hope?

Doc, I’ve tried to put myself in your shoes, but I can’t imagine how, day in and day out, you see humanity at its weakest and still find the strength to help us. I’m just glad that you can. And I know I need much more from you than you need from me, but I’ll do anything to help you help me, if only you can squeeze out a little time to teach me how to be a good cancer patient in addition to everything else that I ask of you.

Neither you nor I can predict the future, Doc, and I don’t expect you to do more than is humanly possible. But may I trust you to treat my future as if it were your very own?

Respectfully,
Your Patient

Betsy de Parry is the author of The Roller Coaster Chroncles and host of a series of webcasts about cancer. Find her on Facebook or email her.

And now the response:


Dear Patient,

You have asked questions about the unique aspects of the doctor-patient relationship. I will attempt to answer them as well as share my perspective on illness.

Life is indeed defined by relationships — feeling understood and feeling connected in our relations is trust.

You ask what you are trusting in me. Trust is earned. It is fair for all of us seeking care to expect competence, it is fair to seek excellence, it is fair to want the best. It is right to demand respect. It is right to demand honesty.

You ask that I not be too proud to call in colleagues if I run out of ideas. The Hippocratic Oath, a verbal decree by doctors to honor and respect human life, speaks to integrity. "Do No Harm." My interpretation of this most powerful phrase is that we must not be wrapped in solitary ego and hence filled with the imposter syndrome, afraid of being found out that we are fallible, imperfect and not all-knowing, afraid of what we don't know. A good doctor knows what she doesn't know, is not afraid of that fact and discloses it humbly. Owning our limitations is freeing and honors our shared humanity. Consulting with colleagues and other specialists who know more than me about a particular situation is absolutely essential and happens every day.

You ask if I will be honest with you without stealing your hope. Honesty and hope, at times, seem to be mutually exclusive reflections of imminent death versus certain cure. Rather, they are our forever present and forever fluid experience of our life with illness. I will honor both.

You ask if I'll give up on you if the going gets rough. A person doesn't "give up" on another person. While I might give up on a given therapeutic approach, I will never give up on you as a person. I will fight alongside you. I will surrender alongside you, but you — and only you — can decide if, when and how to engage your life, your experience of illness and ultimately your death.

You wonder how to trust members of my team whom you will never meet. The only way that you can feel confident in this dance is to trust me and our team. And it is a team. I promise to hold your best interest in the fore and to represent you to the team. Know that while I cannot formally speak for others, I will demand the very best from those I consult, from those on our team, from those we together entrust with your care.

You ask if I will treat you as more than a collection of cells that needs to be fixed. I reject the concept that doctors must disengage to provide "objective care." What does it mean to be objective anyway — cold, impersonal A+B=C? What good is that? On the contrary, conscious and emotional engagement not only facilitates healing and/or acceptance in the ill, it opens a space in the caregiver as well. In that vulnerable space where spirit mingles, life is transformed for the suffering, and life is transformed for those who bear witness.

You ask me to share your fear and you wonder how I do what I do every day. Perhaps the most frightening words a person might hear in his or her lifetime are "You have cancer." This truth revealed fractures our reality. It challenges our relationship to our inner world, forcing us to re-evaluate who we are.

However, embedded within this experience lived is a gift. The little-known secret is that the gift is not just for the afflicted but also for their entire circle of relationships, including spouse, children, friend and caregiver alike. The only requirements to receive this unique communion: vulnerability and presence.

As a physician engaged in the care of people with a particular rare cancer - where those under my care almost always die — I am thankful for the sharing of truths that have been unveiled to me by these men and women in this, their most vulnerable and internal sanctuary.

In this place of finding themselves dying, brave people have let me into their space where three truths seem to be unveiled again and again as defining gifts of sacredness. These truths can be embraced as three reflections of the word "presence:" conscious engagement, the experience of present time (the razor-sharp now) and the gift of emotional authenticity.

Through these patients, I have come to an understanding that if we are fortunate to actually have time while we are ill, and we are brave enough, what happens as our vanity, our beauty and ultimately our physical identity is stripped away is that we are granted a chance to become our own sacredness — as it becomes all that is left.

Sadly, when people die suddenly, they rarely have the luxury of such time, such a place. But equally as tragic is that most folks never risk to venture to this vulnerable place while living when they do have time. Having our own death close by in life — be it through illness or conscious reflection — sharpens our internal lens by stripping away all that is not present, all that is not presence.

I thank these lovely people for helping me begin to see. It is indeed my experience with deeply reflective and engaged people suffering with cancer that is becoming, for me, a touchstone for such conscious intent.

While the unique bond between a doctor and a patient has often been described as a polarized relationship of doctor gives and patient takes, doctor talks and patient listens or patient questions and doctor answers — this is just silly. Trusting comes when both feel the presence of the other — and hence know the truth of the other.

Finally, you ask if I will treat your future as if it were my very own. Such is the truth of shared experience. I hear you and I see you.

My very best regards to you in this difficult time,

Your Doctor


Gary Hammer, MD, PhD, is director of the Endocrine Oncology Program, within which are the Multidisciplinary Thyroid and Adrenal Cancer Clinics, at the University of Michigan Comprehensive Cancer Center. Hammer holds the Millie Schembechler Professorship in Adrenal Cancer. He is also the director of the University's Center for Organogenesis.

Wednesday, October 6, 2010

A Caregiver's Thoughts on Cancer Awareness


This writing is courtesy of Teresa Bacal with Control Amid Chaos

Teresa is pictured to the right with Husband Joe and their son Greyson

http://www.twitter.com/cntrlamidchaos
http://www.twitter.com/JoeBacal
http://www.YouTube.com/ControlAmidChaos
http://www.ControlAmidChaos.com
http://www.cancercenter.com



We’re in the thick of cancer awareness season. You can’t miss it.

Cancer awareness has different meanings based on how cancer has or has not weaved its way in to your life. If you are one of the fortunate ones whose family has not been directly touched by cancer than cancer awareness to you may simply be that you know the pink ribbons stand for breast cancer. If you, however, are one of the many who has the experience of yourself or a family member being diagnosed with cancer, then cancer awareness takes on a more personal note.

As a caretaker to a cancer patient and now survivor, I am now much more aware of the multitude of types of cancer, the many groups that raise money for cancer care or research in some form, and how cancer truly affects everyone. It can be overwhelming when you decide you want to make a difference and contribute in some form to bringing innovative therapies and the best care to patients faster, or curing cancer. The one thing I find a little disheartening is when people talk about this cancer or that cancer and how one is worse than the other. Any cancer diagnosis to the person and family getting the news is life altering, scary and crushing. The world they - the patient and family - are now living in has just changed forever and they are not comparing one cancer to another. They are just trying to figure out how to get through the day, treat their cancer and live. They are trying to get some sense of control back.

Joe Bacal refuses to let chaos bring him down. He thrives in the extreme world of off-road racing.
He waged war on cancer and won.
Joe’s on a mission to help others Take Control of the chaos in their lives.

I think it is extremely important for all those involved in cancer research and care, to remember the goal is to cure all types of cancer, not just the one they are focused on at the moment. I realize that scientists’, researchers’ and doctors’ focuses may be on one or two types of cancers so they can become a specialist in the area, and it helps them to understand how to treat and hopefully cure that type of cancer. But, let’s not lose sight of the fact that all cancers attack healthy cells in some form, therefore, they are all connected.

To separate types of cancers to such a degree that people get offended when their cancer color is used for the wrong type of cancer is losing sight of the ultimate goal. Isn’t the goal to eradicate all types of cancer? Isn’t the goal to raise funds for research that has a snowball effect and starts to cure one type of cancer and could potentially be used to cure another…and another? Isn’t the goal to cure all of our family and friends so they can live a full life, enjoy the moments that matter most to them, and be with their families until they grow old together?

I applaud anyone who supports cancer research and care in any form, whether it is with your time or money. My one recommendation if you are giving a monetary donation would be to understand how your funds are used. Is most of your donation going to the actual research? What type of research is being done with your donation? What is the background of the program and what are their goals? Is the research something that is shared with other groups?

There are so many groups out there doing research that it makes me wonder if it’s time to have a meeting of the minds and share the findings that have been discovered so far for all types of cancer. Joe and I support Stand Up To Cancer (SU2C), and are so proud that Cancer Treatment Centers of America and The Gateway For Cancer Research partner with SU2C. It’s about collaboration, not competition, among scientists from different institutions on cancer research that brings innovative treatments from the laboratory bench to the patient’s bedside more quickly. It’s about creating more treatment options for patients TODAY. Cancer patients and their families don’t have time to wait or waste…

Once again, my heartfelt thanks to the Control Amid Chaos fans and everyone supporting Joe and the mission to take control of cancer and put patients in the driver’s seat of their care. You are our inspiration…every day.

Teresa Bacal

Tuesday, October 5, 2010

Is "Chemo Brain" a Disability under the ADA (Americans with Disabitlites Act) ?

The article below is great information for my American friends and many will find it very informative and useful, I've copied the article with permission from


" YOUR BRAIN AFTER CHEMO"
Tell your story. Ask your question. Lift the Fog.

Idelle Davidson is an award-winning health, medical, and general-interest journalist whose work has appeared in the Los Angeles Times Magazine, Time, Parents, Discoveries, and many other publications. She is the recipient of the 2009 Pillar of Strength Award from the Wellness Community West Los Angeles for "Making a Difference in Our Community."

You can learn more about the topic of chemo brain at Idelle's blog here is the link:
www.YourBrainAfterChemo.blogspot.com

Monday, October 4, 2010
Is "Chemo Brain" a Disability Under the ADA (Americans With Disabilities Act)?

In researching and co-authoring "Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus," I interviewed countless survivors who reported often debilitating cognitive issues following treatment for cancer. I wanted to know if there were any legal protections available to them in the workplace, or at home if they could no longer work.

To find out, I spoke with Joanna Morales, an attorney and the director of the Cancer Legal Resource Center (CLRC), a national, joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles. The CLRC provides free information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer. I hope you find the information helpful. -- Idelle Davidson
Q and A With Joanna Morales

ID) What is the legal standard to qualify for a disability?

JM) To have a disability under the ADA's definition of disability, you have to have a physical or mental impairment that substantially limits major life activities, have a history of an impairment, or be regarded as having an impairment.

Major life activities have traditionally been things like walking, talking, eating, breathing and working. But when the ADA amendments passed in 2008, they specifically delineated some additional major life activities that made it easier for someone with cancer to actually use the ADA's protections.

And those activities include sleeping, concentrating, thinking, communicating and operation of major bodily functions.

So, particularly the concentrating and thinking activities really speak to the side effects from treatment that we often call, "chemo brain."

This really makes it much easier to argue that the effects of chemo brain are substantially limiting major life activities. That by itself has made it easier for people with cancer to use the ADA's protections.

Now what that means is you really get two types of protections in the employment arena. One is that you're protected against discrimination. And two is that you get access to reasonable accommodations.

ID) What would those accommodations be?

JM) Reasonable accommodations are things that could accommodate you in the workplace if you are experiencing chemo brain. That might mean having a note taker in a meeting or maybe your employer would buy you a tape recorder so that you can tape record meetings to help you remember what was agreed upon in that meeting.

That might also mean help with organization of your workspace or providing things that are going to make the concentrating piece, or sometimes the memory piece, easier for you in the work environment. So maybe your employer might provide access to a hand-held electronic device such as a PDA (personal digital assistant) so that you can take notes and have access to your contacts, calendar, and to-do list all in the same place.

So there are lots of pretty simple things that can be reasonable accommodations and can ease your experience with chemo brain and are relatively easy for an employer to provide.

ID) But "chemo brain" may not be severe in every case.

JM) That's correct. We can never say across the board that everyone who experiences chemo brain has a disability, or even that everyone who has cancer has a disability. That analysis is always done on a case-by-case basis. It's how your particular diagnosis is affecting your particular major life activities and whether or not that effect is substantial.

ID) Who makes that evaluation?

JM) Eventually if it were to go to that point, it would be a court. So you would hope that you wouldn't have to go to court to make the argument that you do have a qualifying disability.

But initially if you're having that conversation with your employer, your employer is going to get that information from your health care team. All you may need is just a letter from a health care professional that speaks to your particular medical condition and your ability to function in the context of major life activities.

ID) So the employee makes a request for an accommodation. What happens next?

JM) Once a request for an accommodation is made, the employer and employee are supposed to engage in what is called the "interactive process," so that there is a discussion about the accommodations that are being requested and if there are perhaps alternative accommodations that would work better. It's supposed to be a back-and-forth dialogue. But ultimately the employee is supposed to get an accommodation.

Now if along the way the employee doesn't feel as if he's getting heard, there are different options. One is mediating with the employer, filing a complaint with the state fair employment agency or the federal Equal Employment Opportunity Commission (EEOC) or pursuing legal representation. That can be something as simple as a lawyer writing a letter on behalf of the employee, reminding the employer of their obligations under the law and what the employee is asking for, or it can be much more aggressive depending on the circumstances.

ID) What if you just can't work anymore even with accommodations?

JM) Then disability benefits are a pretty good option if you qualify for them. There are lots of different types of disability benefits. There are some states that have state disability insurance programs. There are employers who offer short and long-term disability insurance plans through your work. You can also buy your own private short or long-term disability insurance plan. There are also the two federal long-term disability insurance plans available through the Social Security Administration: Social Security Disability Insurance (SSDI), and Supplemental Security Income (SSI).

ID) What are the qualifications for each one?

The qualifications for each are very different. In California, for example, the California State Disability Insurance (SDI) plan has the lowest standard of disability. You just have to have a medical condition that is keeping you out of work at least eight days. That's probably the simplest definition of disability.

For SSI and SSDI, you must have a disability that's expected to last longer than a year and is keeping you from substantial gainful activity.

And then for private plans, whether they are something you purchase yourself, or are purchased through an employer, the contract is going to define disability and the terms of the policy.

ID) What are the specific disability benefits for each program?

It depends on the program. In California, SDI will pay approximately 55% of your income while you were working. It's a formula. They look back over a certain number of quarters of what you were making and then it's 55% of that amount.

Then there are the two federal long-term programs. SSI is a flat monthly rate and SSDI pays benefits based on what you have paid into the Social Security system over your work history.

ID) What if you don't work? Perhaps you're retired or you're a stay-at-home parent where functioning at home is difficult. What then?

JM) If you aren't working, but are in a situation where you are experiencing chemo brain and maybe other long-term side effects from treatment such as fatigue or depression you may qualify for other assistance programs. Getting assistance around the house, whether it be paying bills or daily chores, can bring up a number of different areas of the law. So if it's financial management, perhaps you would want to consider a power of attorney for financial affairs. If it's to keep track of the day-to-day things, you may be able to qualify for in-home support services, depending on your income and whether you qualify for that program.

ID) Where does that assistance come from?

In-Home Support Services (IHSS) is a program related to Medicaid (Medi-Cal in California) that is available in some states (contact the Cancer Legal Resource Center for state information). And it's specifically available to assist people who would prefer to stay in their own home, rather than be forced into moving to an institutional environment like a nursing home. And they can have someone come into their home and help them.

IHSS will do an assessment to see what your capacity is and what you need help with and how many hours per week you require assistance, then they come up with a formula and they will pay for part or all of that care. But you do need to have an income level that qualifies you for the Medicaid program in your state.

ID) How can people reach you if they have questions?

JM) People can contact our national, toll-free telephone assistance line at 866-THE-CLRC (866-843-2572) or visit our website at www.CancerLegalResourceCenter.org for more information about these topics and other cancer-related legal issues.

To learn more about "Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus" by Dan Silverman, MD, PhD. and Idelle Davidson, visit www.YourBrainAfterChemo.com or find the book on Amazon.

For permission to reprint this article, please send an email to IdelleDavidson@gmail.com.
Posted by Idelle Davidson at 1:27 PM
Labels: Americans With Disabilities Act (ADA), Ask the Experts, Chemo Brain, Chemobrain, chemotherapy, CLRC, Cognitive, Joanna Morales
6 comments:

Helping out, and entertainment.

I've been thinking of ways and things I can do to give back. I plan on putting in some time with the Windsor Essex Regional Cancer Center Foundation, as they have done so much for us. Also to anyone out there looking to help here's an idea, you could purchase tickets on the Canadian Cancer Society Lottery ( http://lottery.cancer.ca/index.asp ) helping a good cause and a chance to win prizes too! If your not interested in the prizes you could send me the ticket, we could sure use a break and a chance on this end! You could also donate to the Windsor Essex Regional Cancer Center Foundation ( http://www.windsorcancerfoundation.org ) Again a great organization that does great things for our Center and for those who use it.

Then there is my Facebook activity, sharing my story there and help others in anyway I can. I really do believe that sharing your story gives comfort those just beginning their journey as well as those well into their journey. It let's you know your not alone and someone else is going through what you are going through, very comforting to compare notes and stories.

On the medication switch front, I am now into stage 2 which is 2, 300mg Gabapentin capsules 3 times a day, this will be for four days, I then will be contacting the Dr.'s office to get the ok to move up to 3, 300mg capsules 3 times a day. The past week has not been pleasant with regards to the CIPN.

Brenda has had another of her attacks. This last one about 2 hrs long. The test date is not coming fast enough! Boy time drags when your waiting for something urgent.

Roger Waters, The Wall LIVE! is coming up this month, (http://vimeo.com/15218553 )man, I can't wait for this one. Again thanks to Brenda's Uncle Tom for the tickets this is definitely a historic event in my books, I will try to get pics, maybe I can find a good camera to borrow, mine does not seem to work well indoors or in dark settings. We are also going to see Cirque du Soliel in November, ( http://www.cirquedusoleil.com/en/shows/dralion/default.aspx ), Hope everyone is well no matter where you are in your journey. xxx

Friday, October 1, 2010

It's official, Gabapentin it is!

Well got the call, yesterday actually, that since there is really nothing new out there for the neuropathic pain I will be switching back to Gabapentin from Lyrica. Had to try I guess, it's been and experience that's for sure! So did the switch today, and starting out gradually again, 300mg three times per day for four days the up to 600mg three times a day for four days. After completing the 4 days of 600mg, I will have to check in with the Dr. and see how it's going and go from there. I was up to 900mg three times per day when I did the switch to Lyrica.

Brenda had her tooth fixed and has a couple of follow ups with the dentist now just to bring everything up to snuff! Her attacks have been less frequent and less often, still having them though, watching very carefully what she's eating and physical activity as well, because still not 100% sure what the cause is till after the scope later this month. Her cousin and her family from Botswana, Africa were here for a visit and everyone enjoyed each others company, was a good time. The kids and Cheryl too, had a blast feeding the Canada geese down in the park out front of the building. They are back in Saskatoon now till they return to Africa in Nov. (Pic is a little dark as it was around 6-7pm and photo was taken from our 6th flr balcony)

So, we shall see how the change goes, hope I feel better that I have lately, I really think it was the change of meds affecting me, but we will find out in a few weeks when I get back to where I was with the med. Hope this finds everyone well in their journey's.

Wednesday, September 29, 2010

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!

Friday, September 24, 2010

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.

Wednesday, September 15, 2010

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.

Tuesday, September 14, 2010

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.)

Friday, September 10, 2010

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!

Wednesday, September 8, 2010

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.

Tuesday, August 31, 2010

September is Lymphoma Awareness Month


Well, it's that time of year again, I'm making the lime green ribbons to spread awareness about lymphoma's. Also started a challenge on my FB pages to spread the word of awareness.

It is estimated that 7500 new cases of non-Hodgkin lymphoma will be diagnosed in Canada in 2010.
About 74,030 people living in the United States will be diagnosed with lymphoma in 2010 (8,490 cases of Hodgkin lymphoma and 65,540 cases of NHL). The incidence of non-Hodgkin's lymphoma has doubled in recent decades; and no one knows why.

So, as you can see by the numbers, bringing awareness to lymphoma's is of the utmost importance. I feel that by sharing my story and doing what I can, is only a small step in a much bigger picture.

Interesting thing happened yesterday when I was at the cancer clinic for an appointment in the supportive care dept. I asked several people there (at the clinic and in the dept.) if they knew what this month was. Not one person could tell me!! I brought them up to speed in a hurry. So you can see why it's important for YOU! to spread the word about lymphoma's.

Make some lime green ribbons to spread awareness for non-Hodgkin's. Or do what you can, whatever it may be, to make someone aware of lymphoma this month.

You'll be amazed at how many people will ask about the ribbon when you wear one. If you don't wish to wear one all month, then be sure to wear one on September 15th which is world lymphoma awareness day!

Thursday, August 26, 2010

Ok, so more to today's update.

Went for my appointment with my radiation oncologist this afternoon. Seen a different Dr.( one that Dr. Schneider says he might just hire) he went over my scan results which were clean! No new growth, no new nodes, current nodes shrinking as they should. He also did the camera up the nose and down the throat thing and all looked good in there as well. He was really concerned with the amount of swelling, which I told him it had been that way for quite some time now. He is also changing my meds for the CIPN (neuropathy). Hopefully that works cause the neuropathy pain has been terrible lately. Dr. Schneider ended up dropping in to say hi at the end.
Also seen my dietitian today as well. Guess I'm up a kilo, I'll have to walk that off! Will see the Dr. again in a month as they want to monitor this med change. So I'll be weaning off of the Gabapentin for 2 weeks the starting the new stuff, Pregabalin. Ok, almost time for BB, so later!!

Latest news.

Sorry I've been a little behind on doing things with this page. Time now to start getting busy with it.
Well the move from hell is over now and the dust has settled and we are finally settled in at the new place. I have to tell you I love it!! Should have done this 10 yrs ago, who knew. Apartment living is great and the view, well it is priceless!

Been doing my daily walks at the mall, still loosing some weight, oz. by oz. lol. I have though had a really sore lower back lately and it seems to radiate up to my collarbone/neck area where it "tingles". Also this last week or so the neuropathy has really been raising hell with my left hand and foot. I will be mentioning all of this to my radiation oncologist when I see him today.

Brenda is doing absolutely fabulous with her weight loss journey, she is getting very close to goal weight and is looking great! I guess that is trouble for me, I'm sure there is a new wardrobe some where in all of this real soon! Ouch! We went to Ypsilanti Mi. a few weeks ago for Brenda's 1 yr. follow up which went very well. Dr. was happy with everything.

We also met up with one of my cancer friends on Facebook, Betsy de Parry in Ann Arbor Mi. We had lunch and chatted for a few hrs. Betsy also brought us a copy of her book The Roller Coaster Chronicles and even signed it for us! Betsy is just a great person who advocates for lymphoma's and treatments. She now has her own web cast on www.lymphomahelp.org/audio.htm. Going to figure out how to put the permanent link.

So that's it for now, will update again real so. Good vibes to all no matter where you are in your journey's .

We are still looking for a buyer for our trailer. Only been out a few times this season. I really has been neglected these past few years since I've been ill and really needs some TLC! We are really hoping to have it sold by the beginning of October and will entertain any reasonable offer! I have is posted on www.kijiji.ca/windsor under r.v.'s.

Friday, April 16, 2010

High dose anti-biotics to do the trick!

Seen the Dr. this morning about this throat thing and the overall weakness, after looking in my throat which was "red and awful looking" she prescribed 7 days worth of heavy hitting anti-biotic. Sure hope this does the trick cause I have 0 energy and lots to do. Hope to get a lot done this weekend. Have put out the word to get a disposal bin, should make things a lot quicker and cheaper!! as it is costing a fortune going back and forth to the public drop off. Hope everyone has a good Friday, and weekend as well.

Thursday, April 15, 2010

Moving, who knew!

Who knew that after 20yrs in the same place one would accumulate so much! As we are moving from a 2 bdrm home with basement to a 2 bdrm apt. with NO basement it has become quite a challenge to get the basement here at the house emptied out. Seems like every time I make some head way or a space it just keeps getting filled up again.

Brenda has picked up Jason (her son) for the day and he will be going under the house into the crawl space to try and empty it out today. We shall see. I really think or at least hope that once the basement is emptied the rest of the packing should go quickly, or at least that is what I'm thinking!
I'm guessing another week to get things all sorted out with the basement. I try to do at least 1 job every day, however today is going to be a rest day as I woke up with a terribly sore throat, and barely the energy to get out of bed!,

Well that's my world for now. Will keep y'all posted with the moving adventures as they go.

Monday, April 12, 2010

When it all began.

I am a 4 time cancer survivor since 2007, I underwent a bone marrow/stem cell transplant in Dec/08, and I was diagnosed again in Dec/09 with yet another cancer and am currently undergoing radiation. My story begins in December of 2006, I was seeing an E.N.T. Specialist to find the cause of a lump on the left side on my neck. During the exam he asked if he could go through my nostril and down my throat with a camera to have a look, of course I agreed. It was during this exam the he found a small mass on the left side of my vocal chord. A biopsy followed a week later, the results came back positive, I had a squamous cell carcinoma of the left vocal chord. I was then scheduled for 25 rounds of radiation. The Specialist, as well as my Radiation Oncologist, were both confident we would get a full remission as I was diagnosed early and was pre-stage 1. However, after all of this, we still did not know the reason for the lump on my neck, as it was still there and not related to this.
It was during the radiation treatments that another lump developed on the right side of my neck. My Oncologist referred me back to the original Specialist/Surgeon to remove the lump in order to send it for a biopsy. The biopsy was inconclusive and the sample was sent to London Health Sciences center for more testing. As I was nearing the end of my radiation treatments, the results of the biopsy came back. It was positive for T-Cell Histiocyte Rich Diffuse Large B-Cell Non-Hodgkin's Lymphoma.
I now was going straight from Radiation to Chemotherapy. After a consultation with the Medical Oncologist it was determined that being an aggressive cancer we would treat it aggressively with 8 rounds of R-CHOP. I began my treatments in March of 2007 2 weeks after finishing radiation and continued until September of 2007 at which time I was in remission, yea!.
In February of 2008 after feeling a lump in my neck again, and having a follow-up C/T I was informed the cancer (Lymphoma) was back and it was now in my head, neck and lungs. After consultation with my Oncologist it was decided that the treatment regimen this time would be GDP, again more aggressive to treat aggressive. I began treatment again in March of 2008, almost a year to the day of my first chemo experience. Again I underwent 8 rounds of chemo and finished treatment in September of 2008 and was in remission once again. My Oncologist was now recommending an Autologous Stem Cell Transplant, she stated this was being done to try and obtain a longer remission period or cure.
In October of 2008 I went to London Health Sciences Center for a Stem Cell Harvest to prepare for the transplant. In early November of 2008 after two attempts at a stem cell harvest it was determined that they were not able to obtain enough cells for the transplant. In mid/end November of 2008 I again went back to London, where they now were going to go right to the bone and harvest bone marrow. Success! I was now being sent home again to Windsor and would be returning to London in a week to be admitted for the transplant. I was admitted to London the end of November 2008 to do the transplant and was there for 3 weeks, during which time I celebrated my 50th Birthday, and as my nurse informed me, my "new" birthday. I was back home in Windsor just in time for Christmas.
I participated in the Canadian Cancer Society's Relay for Life here in Windsor on June 19 2009 for the first time, and met many new friends and survivors.
In Jan/10 I once again relapsed and have stared radiation treatments, I am very grateful to my wife, all my Doctors throughout this time and to all family and friends.
UPDATE: It has been found that although I have relapsed this once again is a different form of cancer. I now have Nodular Lymphocyte Predominate Hodgkin's Lymphoma. This is very curable and it has been decided that radiation therapy is the best option. I will be starting treatment Feb 24/10 and will be having 20 treatments over four weeks.