YMCA and Livestrong Program Free to Cancer Survivors

January 20, 2015 - I joined the Livestrong program at the Crosby Center YMCA in Winter Park, Florida.  After spending a year researching nutrition, I realized that I needed to work on my physical fitness and strength.  I found out about this program from a blog by Wendy Chioji, a local reporter.  I remembered reading that she had a second bout with cancer this year and I wanted to see how she was doing.  She has been my inspiration for years as an optimistic fighter against this terrible disease and she is an advocate for the Livestrong program.  Here is her blog if you want to read her story.  http://wendy.growingbolder.com/  If it wasn’t for her mentioning the program, I wouldn’t have known about it.

The Livestrong program lasted for 12 weeks and taught me that consistency is the key in lifestyle changes.  It was only a 2 day/week program and I wasn’t sure if it would really work.  But it did!  Now, I went from walking under 3 mph, huffing and puffing to 4 mph without shortness of breath.  My strength has increased threefold and my dress size is a perfect 8.  I feel stronger, have more energy and the class was fun.  We even had a Zumba lesson and a Yoga class.  We learned flexibility stretches and how to exercise properly.  Now I continue twice a week at the YMCA.  I want to thank Scott and Beth, our instructors, for making the classes both enjoyable and informative.  This program is open to all cancer survivors and is free.  It doesn’t matter if you are in remission, currently in treatment or just finishing your treatment.

New Year Surveillance - 2015

April 21, 2015.  27 months living with non-muscle invasive bladder cancer.  Every checkup is step on the road to recovery but also a reminder that life is precious and not to be taken for granted.  We could be healed today but it’s no guarantee what tomorrow can bring, because nobody knows.  None of us deserve this disease.  My hope and prayer is that they will find a cure for cancer so nobody has to suffer any more.  And to those still fighting, never give up hope and remain optimistic because no one knows what the future may bring.  So, take one day at a time and live mindfully every day.

My bladder remains under strict surveillance, now every 4 months.  Cystoscopy, urine cytology and FISH tests remain a constant with me.

January 12, 2015 marks my two year anniversary of being bladder cancer free.  I was so nervous about this cystoscopy.  My fellow members of the BCAN Inspire website refer to this as scanxiety.  Looking back, I don’t know how I could have made it without a group of other bladder cancer survivors.  They know, they understand, they share and we support each other.  

Living With Non-Invasive Bladder Cancer - Quarterly Surveillance

February 26, 2014 - September 5, 2014 My quarterly surveillance continues with my local urologist.  So far there have been no recurrences.  Praise God!  April 21 my doctor recommended that I have another CT scan even though my cystoscopy has been normal for a year.  Everything looked good on the scan.  I believe that it is important to stay positive but because bladder cancer has the highest recurrence rate, it is sometimes hard and our fears override especially when the next cystoscopy is due.  On September 14 my urine cytology was negative but my FISH test was positive.  A FISH test checks for DNA damage that may indicate the presence of cancer.  Because the FISH test is highly sensitive and sometimes gives a false positive, my doctor ordered a second FISH test.  That one came back negative.  This was a time when we were under a lot of stress.  I wasn’t exercising, stopped juicing and was not managing my stress.  We were moving and downsizing.  Not an easy task.  2014 was a stressful time.  Both getting back on my feet and moving to a new home was not the highlight of my year.  I am looking forward to 2015.

November 25, 2013 - Surveillance #2.  Because the holidays are coming up, I wanted to get my surveillance done early in order to enjoy them.  More good news.  All clear!  No recurrences.  This time last year I was having hematuria.  I can’t believe a year has past.  I have much to be grateful for this year, my health, and can face the new year with optimism.

September 27, 2013 - Surveillance #1.  It’s been 3 months since the restaging of my bladder cancer and it’s been 5 months since I completed my immunotherapy.  This starts my quarterly surveillance.  Today I am having a cystoscopy and urine cytology.  This is a stressful time for me because I am not taking maintenance BCG.  Instead I am having the doctor check my bladder visually every three months looking for recurrences.  The doctor told me my bladder looks good and I had a complete response to BCG treatments.  Doctor Smith said my bladder looked terrific and to continue with the surveillance every three months.  Praise God!

June 13, 2013 - Restaging of my bladder cancer

Because Johns Hopkins was such a long trip, this time I went to Vanderbilt Universary Medical Center for a consultation and evaluation of my bladder post BCG. They repeated the CT Scan, urine cytology and FISH test.  I also went under general anesthesia and had a cystoscopy along with directed biopsies of right, left, anterior, posterior and trigone area.  I am happy to report the doctor said my bladder looked beautiful and looked like I never had bladder cancer.  We discussed the option of BCG maintenance treatments but because I bled a lot from the first 6 treatments and required bed rest, I asked if I could take a 3 month break with a cystoscopy at the end of 3 months.  The doctor explained to me that if I had a recurrence during that time, I would have to start from the beginning with my treatments.  I agreed knowing that if it came back during that time, it would be aggressive and I would instead opt for an RC (complete bladder removal).  In the meantime, I changed my whole diet to whole foods and increased my fruits and vegetables to a total of 10 servings a day.  I also juice twice a day, ate animal protein 3 times a week with vegetarian the rest of the week.  I made sure I had 30 minutes in the sun every day for vitamin D.  And I took various supplements.  Plus, I switched to a slightly alkaline diet and drank lots of water.

February 20, 2013 - April 10, 2013 - Immunotherapy Treatment

Immunotherapy for bladder cancer is also know as BCG (Bacillus Calmette-Guerin), which is a weakened tuberculosis vaccine that has been found to be very effective in treating non invasive bladder cancer and CIS.  The use of BCG for bladder cancer was developed by Dr. Donald Lamm and his research led to the approval by the FDA for bladder cancer treatment.  You normally have 6 treatments, once a week and prior to each treatment, they check your urine for infection.  Each treatment is a little rougher on your bladder and usually gets really rough around the fifth or sixth treatment.  But, everyone is different.

Procedure: The instillation is usually done my a medical assistant inserting a small rubber catheter into the bladder so the BCG can be administered directly into the bladder.  You are asked to hold the solution in the bladder for 2 hours while changing position every 15 minutes.  E.G. back, right side, tummy, left side.  In my case I also held my legs straight in the air so the solution could reach the dome of my bladder.  After the first few voids, you must pour a cup of bleach in the toilet and let stand for 15 minutes before flushing.  Gloves and masks are recommended as precautionary measures.

February 20 - #1 treatment went fine.  I had flu like symptoms and felt like I got hit by a Mac truck.  On the fifth day post treatment, I was voiding blood.  On the sixth day I was passing blood clots.  I went to the doctor’s office with a blocked urethra.  I had a catheter inserted and a bladder wash.  I skipped the next week’s treatment.

March 6 - March 13 - Treatments #2 and 3 went as expected.  Bed rest to control the bleeding.

March 20 - #4 treatment was a little more intense, what other BCAN members warned me about.  The first 6 hours were the toughest.  Sudden urgency, cramping, some bleeding and discomfort.  On thursday I woke up with a pounding headache and took extra Tylenol for relief.

March 28 - #5 treatment.  The first two hours went well.  But after the first void I began passing blood followed by intense bladder pain.  I finally had to crack open the Percocet I had on hand just in case.  What a huge difference!  Then I switched to extra strength Tylenol.  Already I am dreading my last treatment but I am holding on to my six weeks of recovery time after treatment 6.

April 3 - #6 treatment scheduled.  This week I was due for my last treatment but they decided not to do it due to a large amount of leucocytes in my urine.  Instead, they did a urine culture and postponed my treatment until next week.  And the medical assistant told me it is not uncommon to get an infection when being catheterised each week.

April 10 - #6 treatment.  Urinalysis revealed reduced to moderate amount of leucocytes, no trace of blood was found.  Doctor gave ok for my final induction of BCG. I was grateful that I had a week to rest between treatments 5 and 6 as these caused bleeding, small clots, bladder spasms and extreme urgency every 15 minutes. My last treatment was the worst.  Holding the solution for 2 hours was never an issue and the pain always started after my first void.  This time I was unable to control my bladder for the first few hours after my first void.  It was as if someone turned the faucet without my permission.  I remember watching the clock knowing that, given time, the symptoms would decrease.  Now I can rest for 6 weeks before finding out if the treatments worked.

February 4, 2013 - Second Surgery and Opinion at Johns Hopkins

I decided that if I have to go under general anesthesia again, then I would go to Johns Hopkins Medical Center and get a second opinion from their urologist.  I also looked up the American Urological Association guidelines which recommended (for the best outcome) to have two TURBT’s four weeks apart before immunotherapy treatment is started.  The surgeon was able to get the muscle sample but also found what looked like Carcinoma in situ (CIS).  Or it could be inflammation due to the previous surgery.  Both urologists agreed on immunotherapy as my first choice of treatment based on the pathology at Florida Hospital Orlando and the pathology at Johns Hopkins.

January 21, 2013 - Pathology Results

Pathology from Florida Hospital Orlando came back as non-invasive high grade papillary carcinoma.  Johns Hopkins pathology report agreed with the diagnosis.  However, there was no muscle tissue present in the sample.  This meant that without muscle tissue, they cannot determine conclusively if the cancer was invasive or not.  My surgeon was sure he had gotten a muscle tissue sample and was surprized to hear the pathologist did not find any.  Because there is no way for a surgeon to easily determine whether they have gotten muscle tissue and they don’t want to perforate the bladder wall, they depend on the pathologist to determine if muscle tissue is found.

My surgeon recommended that he put me under general anesthesia again to obtain muscle tissue.  And if it is non invasive, I would start immunotherapy six weeks after surgery.