• Breaking the silence, the road to victory

VICTORY CHEST

~ Memories of my husband lost too soon to cancer and life with our amazing daughters

VICTORY CHEST

Category Archives: Breaking the silence

Rough Day…death certificate

07 Friday Feb 2014

Posted by Victory Chest in Breaking the silence

≈ Leave a comment

Tags

cancer sucks, death certificate

image_1

Yesterday was a very difficult day.  I went to pick up David’s death certificate.  I am still in shock as I type this. How can it be that I am picking up such a document? Just a few years ago, I picked up the birth certificates of our children. This still makes no sense.

To add insult to injury, the Doctor who completed the certificate did not take the time to accurately complete the medical section. I was most alarmed by the section on “onset of disease to death” where she simply put one year. This made me irate as it completely undermines the fact that he battled with this disease for more than 3 years. She did not bother to check his medical records even though she was part of his treatment team and clearly had access to his medical records.

I called their office to share my frustration and while the actual certificate cannot be changed, I anticipate that they will issue an addendum.

Breaking the silence

01 Saturday Feb 2014

Posted by Victory Chest in Breaking the silence, Cancer Sucks

≈ 16 Comments

Tags

breaking the silence, cancer sucks

speak-upDuring most of David’s struggle with cancer, we dealt with it with extreme privacy.  It was something, we believed we will overcome and be able to share as good news. David wanted this privacy because he did not want people to feel sorry for him or worry about him.

As time proceeded, David became more comfortable informing some of his closest friends and confidants but somehow I found it impossible to talk about it to almost anyone.  For me, speaking about it almost reflected accepting defeat and that was not an option.  We are fighters and we were too busy fighting the disease. I was only interested in talking with individuals that had solutions to treating and curing the cancer.

I am finally breaking the silence because I hope speaking about our experience will be a therapeutic way to release some of the emotions that I have bottled up as we fought this disease for over 3 years. I also want to share our experience as a young family dealing with cancer in hopes that others may find it helpful, and  to document the legacy of an amazing husband and father.

Here is a summary of the experience, more details on some of the experiences will be provided in subsequent posts over time.

  • Oct 2010: Pregnant with our second child
  • Oct 2010: David visited his urologist complaining about pain, after some test he was assured that he was fine and the microscopic blood in the urine was likely due to the fact that he was an avid runner. He used to run up to ten miles at least five days a week.
  • Nov 2010: discomfort persisted, he went back to the doctor and he prescribed some medicine and asked David to come back in 30 days. The discomfort got more intense, David returned earlier, ultrasound was performed and a “likely cysts” was seen in his bladder, CT scan was ordered.
  • Dec 2010: scan confirmed 2 cm growth in bladder, cystoscopy was ordered, growth was removed, the Doctor indicated it was all clear, unlikely to be more serious invasive bladder cancer. Sadly, the pathology results a week later confirmed otherwise, tumor was classified “high grade invasive bladder cancer”, surgery was scheduled
  • Jan 2011: Surgery completed to remove only the affected and potentially affected part of bladder, Doctor seemed encouraged that potential for spreading was minimized. Sadly, pathology of lymph node confirmed spread to lymph nodes, chemotherapy ordered
  • Mar 2011: Chemotherapy began, this came with fatigue, nausea, low white blood count, bone pain, hair loss, swelling
  • June 2011: Our second child is born, it is a girl, David was excited beyond anything.  He was so happy to have another girl, saying the bond of Sisterhood is unbeatable
  • Aug 2011: Chemo completed, a week later he ended up in the ER with pulmonary embolism. Post chemo completion CT scan showed, all clear – no sign of cancer in his body – sadly, this will be short lived
  • Nov 2011: David found our dream home, offer was accepted
  • Dec 2011: Cystoscopy was clear, Closed on the new house, ready for a great new year
  • Jan 2012: Moved to the new house, David noted blood in urine and kidney pain, back to ER and urologist for evaluation
  • Feb 2012: Re-occurrence of cancer confirmed, a 6 cm tumor in his pelvic region and also blocking urine flow to the bladder. A nephrostomy tube was placed in his kidney to improve urine flow.
  • Mar 2012: Started radiation and another round of chemo, less nausea, no hair loss, but very severe pain. Began going to Memorial Sloan Kettering in NYC to explore additional treatment options, lifestyle modification diet, and started acupuncture to ease the pain
  • Apr 2012: Radiation and chemo completed
  • May 2012: Sloan Kettering Urologist confirmed surgery can be performed to removal cancerous bladder and pelvic mass, case transferred to another surgeon. At pre-surgical consultation, the Doctor indicated that the surgery could not be performed. Sloan Kettering’s only recommendation was to “wait and watch”. We were DEVASTATED but we were not going to just sit and wait, we remained relentless to look for options.
  • Jun 2012: CT scan showed further shrinkage in tumor, encouraging but we need more promising results
  • Jul  2012: Started seeing another Dr in NYC alleged to use both conventional and other innovative treatment approach. Collaborates with a Clinic in Germany to provide dendritic cell based treatment.
  • Aug 2012: Trip to Germany for the dendritic vaccine treatment. Took the whole family and made a family vacation in Paris
  • Sep 2012: Best David had felt in while, he even drove out of town for a 2 day business trip. Things felt normal. We did a tumor profile test to help identified potential treatments that may help target David’s specific cancer
  • Oct 2012: Cystoscopy showed new “small” tumor in bladder
  • Nov 2012: CT scan indicated small increase in pelvic mass, Sloan Kettering Doctor still view disease to “stable”
  • Dec 2012: Increased pain, swelling of feet begins to be more prominent
  • Jan 2013: Stopped treatment with “innovative NYC Doctor”, pain became difficult to manage, nerve block done to control pain, relieve was short lived. We shared the results of the tumor profiling test with his Oncologist at Sloan Kettering  to assess for potential clinical trials that match his tumor profile
  • Feb 2013: Leg swelling became significant – the condition classified as lymphedema. Meet with the early stage clinical trial expert at Sloan Kettering.  Unfortunately, he was not a candidate for any of the ongoing trials. Intrathecal pain pump inserted in abdomen, provided significant pain relief
  • Mar 2013: Based on tumor profile results, he started treatment with Afinitor (everlimous), we felt hopeful. Lymphedema therapy began to manage the leg swelling – at first the swelling decreased but this was short lived
  • Jul 2013: The pain increase, failed attempted at stenting to relieve swelling, CT scan revealed tumor was still progressing and had spread to bone in the spine. Afinitor stopped, radiation treatment for bone lesion began, admitted due to pain
  • Aug 2013: Discharged
  • Sep 2013: Started third round of Chemo
  • Nov 2013: Admitted over thanksgiving, stopped chemo, focus on pain management
  • Dec 2013: Pain controlled and under hospice care at home
  • Jan 2014: Cancer no more

This was overwhelming just to write, I cannot help crying as I got toward the end, it reminds me of what a long and painful process it was.  David fought with grace and hope each day until the end and even towards the end he fought some more. As of Feb 2013, one of the Doctor had told us that we were at the end.  He fought harder and gave us almost another year.  Thank you David,  thanks for holding on, seeing your first daughter start kindergarten, and the other beginning to appreciate the excitement of opening the gifts under the Christmas tree are memories that we will forever cherish.

Newer posts →

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 77 other subscribers

Recent Posts

  • Wake me up in three years
  • Twenty years ago…
  • Two years later……
  • Fall foliage
  • A happy birthday?

Top Posts & Pages

  • Wake me up in three years
  • Twenty years ago...
  • Two years later......

Archives

  • January 2017
  • July 2016
  • January 2016
  • November 2015
  • July 2015
  • June 2015
  • May 2015
  • April 2015
  • March 2015
  • February 2015
  • January 2015
  • December 2014
  • November 2014
  • October 2014
  • September 2014
  • August 2014
  • July 2014
  • June 2014
  • May 2014
  • April 2014
  • March 2014
  • February 2014
  • January 2014

Create a free website or blog at WordPress.com.

Privacy & Cookies: This site uses cookies. By continuing to use this website, you agree to their use.
To find out more, including how to control cookies, see here: Cookie Policy
  • Subscribe Subscribed
    • VICTORY CHEST
    • Join 77 other subscribers
    • Already have a WordPress.com account? Log in now.
    • VICTORY CHEST
    • Subscribe Subscribed
    • Sign up
    • Log in
    • Report this content
    • View site in Reader
    • Manage subscriptions
    • Collapse this bar
 

Loading Comments...