Tag Archives: cancer sucks

Breaking the silence – dealing with end stage of cancer

04 Tuesday Mar 2014

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After the cancer reoccurred less than 6 months after completing intense chemotherapy treatment, David and I knew the odds were against us but this made us more determined to fight harder. David put up a great fight for his life. We were so caught up in the fight and finding the right treatment that I refused to be distracted by thinking that this ugly disease will lead to the end.

I could not accept David’s death as an option, I was not interested in discussing it. This was my coping mechanism since I could only function by believing David would live. Resiliently, we kept fighting for victory over cancer.

This changed in November 2013, it was not because I decided to listen to another Doctor of gloom, or over analyze yet another CT scan result.  It was because despite the treatments, the disease continued to take a toll on David’s health. His energy level was depleting, his pain progressed, fatigue increased, and he was less ambulatory.  It became very clear that the progression was irreversible, the treatments were ineffective and causing additional anguish to David.

For the first time, I allowed my self to start coming to terms with the inevitable, the unthinkable. I tried to numb my emotions. I became a different person, a person I that I did not know and one that I am quite sure I did not like. I asked the Lord to spare David from his pain and suffering to preserve his dignity and in David’s words “make it a quick death”. I felt guilty, like I was giving up on David, I became distant from the world.

I recall going on a business trip, it was an escape from my reality – interacting with colleagues like my life was normal. I felt like an impostor. I came back home to my reality, a sad one as I watched my husband deteriorate further. Later that week, I had to take David to the emergency room. Upon his discharge, I knew it was time to change from visiting nurse to in-home hospice care.

I felt defeated because the cancer seemed to be winning.  We are a winning family, we were suppose to win this battle, our biggest battle. How could we go from fighting so hard to accepting the end was near? My goal changed to ensuring that David was comfortable until the end.

David fought hard and was in hospice care at home for almost 2 months before he took his last breath. Those two months as the end approached were undoubtedly one of the worst phases of our life.

This is one of several posts that details our experience with bladder cancer. A concise summary of the overall experience can be found in the blog post titled “breaking the silence”.

How can you be gone?

02 Sunday Mar 2014

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Seriously, how am I suppose to live without you? How can I really live without you? You were everything for me. You balanced me, you were my go to person, bad day – David will fix it, silly question – David will answer it, frustrated – David will bear the brunt of it.

When you went on business trips, we used to joke about how I barely managed to hold things down for a few days without falling apart. Now how am I suppose to hold things together for years, decades?  It has been a month since you have been gone,  it has been horrid. How can I manage for a year?

Seriously, how do I live without you? I do not know how, I have spent ALL my adult life with you. Where do I go now? How do I move on?  How can you be gone forever? NO

This is not fair…..i feel broken. I am broken. I miss you. I need you.

Breaking the silence – the beginning

16 Sunday Feb 2014

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It was thanksgiving day in November 2010, like we did yearly, we were planning to visit David’s parents for lunch, then my Aunty/Uncle’s house for dinner.

I was about 8 weeks pregnant with our second child and my older daughter was watching the Macy’s thanksgiving parade.  Fatigued from the early stage of pregnancy, I eventually managed enough energy to take a shower in preparation for our road trip.  Shortly after I got in the shower, David came in and said he wanted to talk to me.  He looked serious, I immediately got concerned.  I already know he had seen his urologist in October but he had completely down played that it could potentially be serious.  Initially, he told me there was a 2 mm cyst in his bladder but now he told me it was closer to 2 cm and they were not sure what it was and he would need a CT scan to further assess.

I was overcome by fear probably because David also looked concerned and immediately feared the thought of raising our children alone. I went online and googled everything I could about my worst fear, bladder cancer. Eventually I relaxed a bit knowing that if caught early enough, bladder cancer could be cured. I made myself believe that at the worst it was bladder cancer in the early stage. We started feeling hopeful and dug ourselves out of the trenches but we knew we were not mentally ready to visit our families.  We stayed home without a thanksgiving meal, this was fine because we did not have an appetite.

The next day we visited our families but did not mention anything about what was weighing heavily on our minds. It would be until mid to late December that we would have a better idea of what we were up against.

This is one of several posts that will detail our experience with bladder cancer. A concise summary of the overall experience can be found in the blog post titled “breaking the silence”.

Rough Day…death certificate

07 Friday Feb 2014

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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

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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.