Kidney Cancer Canada Patient Education Conference

On Saturday Melanie and I attended a Patient Education Conference held in Toronto for patients, families and others who were interested in learning more about kidney cancer.  The Conference was informative and empowering.  I am so glad that I found Kidney Cancer Canada through my research about kidney cancer.  Their website is chocked full of very useful information about kidney cancer.  The interesting thing about Kidney Cancer Canada is that its  is a charitable patient-led support organization established to improve the quality of life for patients and their families living with kidney cancer. It is only 5 years old and this was their 3rd annual conference.

The best part of the day was the networking that went on with other patients and families.  You don't feel so alone.   Kidney Cancer does not have the same awareness that Prostrate, Breast and Colon Cancer does but it should.  Kidney Cancer is treated like a chronic illness because of the chances metastasis that could occur shortly after the kidney is removed or years later.

I found out things that I did not even considered about how things would be different for me after having my kidney removed. 

Recovery Week Six

I can't believe how fast the time has gone. I have had many thoughts of things that I could possibly do around the house but the only thing that I have the energy or strength to do is some light house work including washing the floors without dumping the pail of water all over the place.lol. The best part I don't get asked "what are doing" or "are you serious, should you be doing that?". I do it when no one is around to catch me doing things. lmao. I continue to walk everyday and most days it is my two mile adventure but there are some days it is only one mile. I try not to get discouraged on the short walk days and it is usually Doug who says it is going to be a short walk for you today because you look like you have had enough. Thank God I have him to remind me not to go overboard because I would probably push myself to the edge of craziness. I still nap in the afternoon if I have been out in the morning or busy doing light house work. The nice thing is I am really starting to feel like my old self and I am not as weepy as I had been at the beginning of my journey.

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The Clinical Drug Trial

I will be starting the Clinical Drug Trial at the beginning of May.  I just hope I don't turn into a human glow stick but if I do at least Doug will have a night light. lol  The Trial is a Double- Blind Study which means that I nor the doctor will know if I am taking the real drug or a placebo.  My Urologist Dr. Kapoor is also the Study Doctor for this trial.  I will be taking the drug for 1 year and will have to have x-rays, CAT scans, blood work and will have to complete questionnaires over this time period. Doug and I figured either way they will be watching me so closely over the next five years what do I have to loose.
The drug is called Pazopanib (also called Votrient) and it is hoped that after having a kidney removed due to cancer the drug can or delay the renal cell tumour from coming back.  There are 1500 hundred adults in approximately 25 countries in North America, South America, Asia and Europe in this study.  It should take 2.5 years to complete and the results should be known in approximately 5 years.  There are side effects to taking this drug so I will know what I am taking.  The biggest side effect is diarrhea, lightening of hair clour ( like this matters I already colour my hair), high blood pressure (great I just got rid of my high blood pressure), rashes and there are so many more.  The ones I have listed are the most common ones. 

I can't believe it has been Five Weeks since My Surgery

Wow five weeks already. I have walked almost every day this week for two miles but still require a nap ever day. I am not sure if it is part of the recovery process or my age. lol. I am going with the recovery process. I feel a lot better this week than I did last which is definitely a good sign.  My right side seems to be more sore this week almost like a pinching sensation.  From my readings it is part of the healing process.    I am so grateful to all my family and friends for their continued support. Today (Friday) I received a call to give me my appointment dates for the Clinical drug trial and my CAT scan. Next Tuesday (April 10) I will go to the Juravinski Cancer Centre in Hamilton to see about becoming part of the drug trial. At the beginning of May I will have my first scan after surgery.

What Cancer cannot do!

If you know anyone who has dealt with Cancer or who is going through cancer please share this poem with them. My mom gave me this poem when I was first diagnosed with Cervical Cancer I read this poem almost everyday and it helped me get through those difficult days. I brought it back out so that once again I can start reading it again.

 What Cancer cannot do!

Cancer is so limited.

It cannot cripple Love.
It cannot shatter Hope.
It cannot corrode Faith.
It cannot destroy Peace.
It cannot kill Friendship.
It cannot suppress Memories.
It cannot silence Courage.
It cannot invade the Soul.
It cannot steal Eternal Life.
It cannot conquer the Spirit.

I am so Grateful for all the Support

I am very fortunate to have a very supportive family and friends.  I know I could not have made it through this so far without all of your love, support, positive thoughts and prayers.For this I thank each and everyone of you from the bottom of my heart. 

Love and Hugs
Denise
           xo

My Fourth Week of Recovery and Follow Up Appointment

This was my best week still walking only .5 to 1 mile a day but finally made it to two on Saturday.  So far so good I don't feel like I had done a marathon.  The trick is to take my time.  

My follow up appointment took the wind out of mine and Doug's sails.  You see as I have said earlier in this blog I was told 100 percent cured well that all changed with the Pathology report.  I am now sitting with a 60 to 70 percent cure and I will take it.  The pathology report found that I had what they call a Common Clear Cell Cancer, Stage PT3A, Grade 2.  What does all this mean?  The most common type of kidney cancer is called renal cell carcinoma. This cancer forms in the cells lining the small tubules in the kidney that filter waste from the blood and make urine.  Stage PT3A, Kidney cancer has 4 stages and I am stage 3.  Kidney cancer is graded from 1 to 4 and I am at a 2, this determines how quickly the cancer grows.  I felt like had had been punched in the stomach with this news.  I am so glad Doug was with me when I was delivered the news.  Even as I think about it now I feel sick to my stomach.  

Well what does all this mean?  It means there is a possibility that it could spread to my lungs or liver.  The possibility of getting kidney cancer in my other kidney is very rare.  What do we do to ensure this does not happen?  Time will tell but I have to believe at this time I am fine and that worrying about what if just can't be part of my thought process.  This way of thinking took few days after hearing all of this information and digesting because I was on an emotional roller coaster but after one really good cry and not a few tearful moments but I mean Niagara Falls crying.   I spoke with a woman who was cleared after five years and eleven years later a tumor was found, it was in fact renal carcinoma and it took all that time for it to manifest itself.  Worrying about what if is not going to help the situation.  So I have decided to do a clinical drug trial that could extend my percentage of not having the cancer return.  I will be having a CAT scan in a month to ensure there are no new tumors at this time.  I will be having regular chest x-rays, CAT scans and blood work to ensure that they keep a close eye on me.  I will also be keeping records and getting all reports so that I too can keep track of my progress.    

One must be very careful when doing any research on the internet and I have discovered a wonderful Website Kidney Cancer Canada.  It is a very good resource and support network for persons with kidney cancer and their families.  At the end of April they are hosting a free conference for patients with kidney cancer and their families which I will be attending. 

On Saturday of this wee