Tag Archives: bladder cancer

Missing that smile

12 Wednesday Nov 2014

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The picture above sits on our mantle. I really like the picture because of David’s smile. Somedays, I look at it and smile and somedays I look at it and cry.  On this Veteran’s day I recall how David loved his country and proudly served in the Air force.

David loved being in the military, it was something he wanted to do since he was a young boy. Before joining the Air force, he was in the civil air patrol.  When we met, his pride and love for country were very clear.

When he decided to leave the service, he believed the timing was right. I was probably happier than he was. I was very happy because it also allowed us to spend more time together and I was relieved that I would not have to worry as much about him being away on duty.

Although David left the service, his heart never really left. It remained a big part of who he was. Many of his mannerisms and actions were a reflection of the discipline and training he had in the service. I always told him his employers were lucky to have him. Every project was treated like a mission, with the greatest focus and attention until it was done. He always had a plan for everything, including a plan for dying – this was way before he was diagnosed with bladder cancer.

After the diagnosis, we tried to understand what may have caused the cancer. There was no explanation based on lifestyle or family history. One key cause of bladder cancer is exposure to chemical toxins from smoking but David was not a smoker. So we wondered if he was unknowingly exposed to toxins while in the service.

He once expressed his frustration that the cancer may have been caused by such exposure while in service as he questioned why it did not result in an earlier onset of the disease before he had every reason to live or later in life after he got to watch our children grow up. His frustration was based on the timing of the disease. He never questioned or regretted his decision to serve. He always spoke about the Air force with great reverence.

At his burial, as he was laid to rest by other members of the Air force, I had a better understanding of the prestige and the charm he always felt as he talked about being a Veteran.

This cancer beast must be stopped

29 Tuesday Jul 2014

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I am shocked by how many people and families are affected by cancer. As I talk more freely about David’s battle with cancer and our struggle, I have gotten to know many others that have been affected with cancer. Some have/had cancer, have a loved one with cancer, or lost a family member to this beast.

This beast has interrupted or destroyed so many lives. The faces of people affected are vast, it does not discern age, race, gender, or ethnicity. There are so many conflicting messages on what causes various types of cancer, what causes one form may be said to prevent another. It seems like a guessing game. It speaks to the fact that there is so much unknown about cancer.

Granted some progress have been made in fighting some forms of cancer but clearly we are still so far behind in the fight against this beast. Some of the cancers that have been well funded and research such as breast cancer still continues to take one too many lives. And there are so many other types of cancers lacking considerably in research and progress such as bladder cancer. For bladder cancer, one of the standard chemo has been available for over two decades and has dismal effectiveness especially when the cancer is more advanced.

Why is the dismal prognosis status-quo for many patients with advanced cancer while most routine medical check-ups do not allow for early diagnosis of many cancers? What can be done to better detect more cancers earlier? What can be done to better understand the cause of cancer?

David was good about going to the Doctor. He had his routine medical exams and made periodic trips to the doctors whenever he did not feel good. His primary care doctor knew him well as did his Urologist. So with all the frequent visits and periodic complaints about discomfort in his bladder, how come bladder cancer was not ruled out earlier? Why were they so quick to assume he had UTI and frequently prescribed antibiotics? Even if it was UTI, at what point would it have made sense to try to better understand the cause of the reoccurring UTIs rather than just treating the symptoms? How did a Urologist fail to recognize some of the hallmark symptoms of bladder cancer?

In my irrational state of grief and also despair during David’s illness, I have wondered if the prefer approach for handling cancer is to manage the disease rather than curing it. People have become accustomed to words like remission – a word that clearly does not reflect a cure but in my view may add to the anticipation that the beast may return.

Let’s kill the cancer beast! We are an intelligent generation, the progress in science and technology in the last century has been remarkable. There have been so much progress in treating and curing diseases that devastated lives centuries and even decades ago. Cancer will not be an exception.  We need better treatment with better results, not months improvement in survival, not years, we need a cure. We need medications that do not cause worse symptoms than the disease.

I write without a solution but with great hope that it can be done. I am optimistic for our generation and I am more optimistic for my children’s generation. No cancer death should be in vain…..let’s conquer this beast.

Breaking the silence – our experience at Memorial Sloan Kettering

18 Sunday May 2014

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Driving into NYC for the first time ever – on the way to Memorial Sloan Ketting

When the news of the diagnosis was received, we knew that we needed to proceed with the appropriate treatment without delay. While we did not fully understand the extend of the disease until after the surgery, we still believed that we were taking the most appropriate steps to cure the cancer.

We did not start at Memorial Sloan Kettering, we started with a local Urologist. Following the initial pathology and based on the recommendation of the Urologist, we agreed to proceed with a partial cystectomy (partial removal of bladder) instead of a radical cystectomy (complete removal of bladder). The doctor was reassuring of the prognosis and the pathology suggested that the profile of the tumor was consistent with cases when a partial cystectomy may be appropriate. Time was also of essence, so while we considered going to NYC for a second opinion, we knew that would delay the treatment. We needed treatment to start promptly without additional delays that may have allowed further spread of the cancer.

The decision to go to Sloan Kettering was prompted by the reoccurrence of the cancer, it reoccured less than six months after he completed a very aggressive chemotherapy treatment with MVAC. I recall that night, David was admitted to the hospital and I wept continuously. He shared the room with another man, a diabetic patient that was loud, obnoxious, and inconsiderate to everyone around him. He must have thought he was in a five star resort based on some of his request to the hospital staff.  Listening to him whine about such minute things was maddened as we faced a very aggressive cancer that had progressed significantly. It was that night that I decided that we are going to an institution where everyone was dealing with similar health issues (this not does undermine the severity of diabetes) but rather the need to be in a hospital that specialized in cancer knowing that we could be facing a life or death situation.

Our Oncologist was very supportive of the decision, he worked at Sloan Kettering previously. However, getting an appointment at Sloan Kettering was not an easy process. The waiting time to see the desired Oncologist was about 6 to 8 weeks. Our Oncologist was also very familiar with the Oncologist and tried to facilitate the appointment. Time was of essence, we were relentless, we could not wait that long. I called several times to check on cancellations. One day I was so overwhelmed and I called crying and practically begging for an earlier appointment. Later that evening, we got the call and had our first appointment the next morning.

It was a horrible appointment, I still resent the Fellow we talked to before the Oncologist. He left David feeling very defeated. He was arrogant. He said we will have done things differently at Sloan if we had come earlier…REALLY. He said the disease was not treatable. We eventually saw the Oncologist, while his tone was better, the overall message was still not optimistic. He had already talked to our local Oncologist about the next course of treatment and recommended that we stay local considering that it involved radiation treatment 5 days a week for 6 weeks.

At the conclusion of the radiation and chemotherapy (carboplatin and Taxol) we transferred treatment to Sloan Kettering, the Urologist reviewed his records, scans, examined inside the bladder and confirmed that the surgery would be feasible, we were overjoyed. At the pre-surgical consultation, he changed his mind – no good reason other than he reviewed the CT scans. So the surgery we were hoping for to remove the cancer was no longer possible – we were devastated.

Although surgery was no longer an option, one of the benefits of staying at Sloan Kettering became their pain management expertise. In 2013, the pain started becoming more debilitating and this is where I believe Sloan Kettering did the best job. After trying a series of oral pain medicine, the most effective pain control was the intrathecal pump, an internalized reservoir that administered significantly lower doses of medication and provided better pain control.  We were reluctant to have it in at first but we were relieved after it was done because it afforded David a better quality of life.

Additionally, going to Sloan Kettering simplified managing the disease. All the Specialists we needed (we saw a lot) were in one place and the staff coordinated the appointments. We could fill prescriptions easily when onsite, and they were generous with providing medical supplies that we needed at home.

One drawback of going to Sloan Kettering was the commute. On average, it took 1.5 to 2 hours each way and sometimes we went there 3 to 4 times a week. I did the driving, this was truly shocking because I never thought I could drive in NYC. It was not long before I became an angry city driver at times as I hustled with the cab drivers and other NYC drivers. The biggest issue with the commute was that the drive compounded any pain or discomfort David was experiencing. Lastly, whenever he had an emergency, since we could not get to Sloan Kettering in a hurry, we had to resort to the local ER.

I found Sloan Kettering to be an efficient, well managed hospital, however, the downside was that at times there was a lack of compassion from some of the doctors and some were blatantly arrogant. Contrary to the nurses who also seems so compassionate.  Also, each time we saw a new Doctor, they made us repeat everything in David’s medical history even though they were readily available in their system. Perhaps it was done to be diligent but for us, it was strenuous because recounting his medical history was a painful reminder of all the disappointments as the disease progressed.

The lack of compassion was further confirmed following David’s death. After managing his care and considering the frequency of interactions and visits, I would have thought the office of his lead Oncologist would have sent a card or a note to express condolences but this never happened.

We do not regret our decision to move to Sloan Kettering and I do not regret the decision to start with an Oncologist that did not work at Sloan. The only decision I have question several times in the past was whether the initial surgery was the right approach. I sometimes wondered if the outcome would have differed if the bladder was completely removed instead of the partial removal. However, considering that we later learned that at the time of surgery that the cancer had spread to the lymph nodes, I believe it is very unlikely that a complete removal would have changed the progression since the cancer had already spread behind the bladder at time of diagnosis.

Overall, I expected that going to Sloan Kettering would allow us access to any treatment option that may be available including those that are still being investigated. When we knew we could not remove the tumor, our hope was to find a treatment to keep the tumor at bay long enough until a cure could be developed in the future. Sadly, although bladder cancer is the 7th leading cause of cancer in this US, awareness and research seems significantly low. One of the standard first-line treatment is MVAC and it has been around for almost 20 years and there has been little improvements with the few other treatments options available.

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”.

David the runner

22 Tuesday Apr 2014

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Now that the weather is getting nicer, I have started seeing a number of people running. I cannot help feeling the pain of David’s loss as I look at them running and appearing so carefree and energized. I am reminder of my dear David, who was an avid runner. He craved running, it was stress relief, it was liberating, and it energized him.

David enjoyed running, swimming, biking, and weight lifting. While it is hard to say which one he liked the most, I believe running gave him the greatest satisfaction. He enjoyed the runner’s high. He had running gear for all seasons, – come rain, come snow, he ran. He always said he had his best run in the rain.

At his peak, he used to average between 10 to 12 miles a day and ran about five days a week. He competed against himself, always trying to break his previous record. He planned on running in the NYC marathon. I asked him once why he was so committed to exercising and he said he was inspired by the birth of our first child to stay in top shape.

Sadly, the microscopic blood noted in David’s urine, a symptom of bladder cancer was simply attributed to the fact that he was an avid runner – a non-serious condition also known as runner’s hematuria. I recall that as the disease progressed, David was upset that despite all his efforts to stay healthy and in top form, he had cancer and the Doctors failed to diagnose it early. However, due to his overall physical and mental wellbeing, I always believed that if anyone could overcome the disease, it was certainly David.

Below is an image of an email David sent me with the details of one of his best run time and a lesson he learned the following day:

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Breaking the silence – the waiting

17 Thursday Apr 2014

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This disease impacted our lives so much over the last 3.5 years. We were in a constant waiting mode. Waiting to schedule appointments, waiting to see Doctors, waiting in the ERs, waiting for procedures, tests results, new medication, CT scans results, MRI results. Waiting to see if the treatments were working.

Well, F you bladder cancer we are liberated from waiting. We no longer have to anxiously wait for a call from Sloan Kettering, have our hearts skip a beat when we see that dreaded number. We no longer have to wait indefinitely for the results of a CT scan, we no longer have to wait for a doctor to return a call on how to manage any symptom or pain that David was experiencing, we no longer have to wait only to hear a doctor say in the most nonchalant manner “sorry I cannot help you”. We are free from waiting for senseless information.

Whenever David had a CT scan, he preferred that they do not call until Monday so that he could enjoy his weekend.  I learned to adopt this approach also. However, at the start of the new week, in most cases, I still had to call the office for the results. At the beginning, we used to go into the office for the results but as time progressed they told us over the phone. The wait in the office was even more painful and could take up to two hours.

The waiting was so destructive and it was torture. Our experience showed me that many doctors and their staff are completely disconnected from the mental anguish families go through. They seems to refuse to understand the level of anxiety patients went through, perhaps it is because we sit patiently in their waiting rooms with a calm disposition. I recall one day as we waited on pins and needles, eventually, we got called to the back and we were asked to complete a survey for “research” purposes.  I was completed irritated as I told the youthful researcher that while I appreciate the need to support research and science, my priority at that instance was the result of David’s CT scan. She was apologetic and I told her that I can complete the survey after we received the results – also depending on the result.

We learned a lesson about patience in a way that is completely unnecessary. It was pretending to be patient while our minds ran wild and our ability to eat or drink halted. Why bring patients in just to wait for hours? Why sit on results for so long while patients are glued to their phone anxiously awaiting the call? Why does it seems that the doctors calls after-hours just as we stepped away from the phone and became unreachable until the next business day and leaving us in anticipation for at least another day?

There is some relief knowing that we are no longer at the mercy of the disease progression, the inadequate treatments or the unavailable doctors. However, it does not take away from the pain of losing you. We will have waited patiently until we found a cure.

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”.

 

Breaking the silence – the medications

27 Thursday Mar 2014

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Some of the medication David too over the last year

Some of the medication David took over the last year

I recall David used to say that the medications were sometimes worse than the disease. It seemed that for every medicine he had for the disease, he had another prescription to combat the side effect for the medication.

There was a medication that caused drowsiness so he had another one to prevent the drowsiness. Another medication caused diarrhea, so another one was prescribed to combat the diarrhea and that caused constipation then he had to take another medication to relief the constipation. This was a vicious cycle, there never seemed to be a right balance.

I was frequently at the pharmacy picking up medications.  I recall going there one Saturday afternoon, at the technician did not even bother asking for name or date of birth. She knew exactly who I was and rang up the prescription. I thanked her, for her it was a reflection of her efficiency and for me it was saddening because I was now a regular at the local pharmacy, a reflection of David’s state of health.

I read the drug information for many of David’s drug in order to know what to anticipate especially regarding the side effects. For the oncology drugs, my curiosity led me to review effectiveness of these drugs.  What was saddening is that many of the drugs showed very limited survival benefits as little as 2 to 10 months.  For me there was nothing encouraging about this, after all we were looking for a cure, not a few extra months. Since a cure was not to be found, I can now say that if the drugs contributed to any extra days, I am grateful for this. While the end stages were very hard, I valued every single day David was alive.

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”.

 

Breaking the silence – the compassionate Doctors

13 Thursday Mar 2014

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Interactions with Doctors, their staff, and hospitals became a routine in our lives.  I recalled one week between David’s illness and my pregnancy we visited 4 hospitals in one week for various tests/appointments. Our experience in dealing with so many Doctors definitely shed light on the different types of doctors. I categorize them into those that were truly compassionate, those that viewed themselves with too much self regard, and those that were driven by the dollars.

The most compassionate doctor David had was his first Oncologist. You could tell that he really wanted to do the best to ensure David beat the disease. David was in the hospital when the reoccurrence was confirmed.  He came to inform us of the extent of the spread of the disease, You could see the sadness in his eyes as he talked. While he did not over promise he was committed to ensuring we started with the next course of the treatment that may offer some relief/hope.

He facilitated the transition of care to Memorial Sloan Kettering and worked closely with the Doctors there and also tried to assist in helping us get an appointment as fast as possible. Even when David was no longer under his care, he called David often to check on his progress, ensured he reviewed every scan results, provided further guidance. When Sloan Kettering said watch and wait, knowing how determined we were, he pointed us in directions of others that may have alternative considerations not available in his hospital.

I recalled David asking him to promise he will help ensure that David would be around to walk his daughters down the aisle and grudgingly he said he promised but you could tell that he did not fully believe it but wanted to be hopeful for our sake.

The last time he called was in December, he called me after trying David’s phone to no avail. I informed him that David was under hospice care. He was compassionately apologetic, it was as if it was a personal defeat for him. His sympathy was genuine, he standout above the rest.

Another Doctor that is noteworthy is David’s anesthesia pain Doctor, he was responsible for managing the intrathecal pain pump. The IT pump was what provided David the best control for his pain. This doctor was readily available despite a very busy schedule whenever I called to report increase pain, they promptly gave us an appointment and he adjusted the medication accordingly. I am truly grateful to him and the staff in his office for all they did to accommodate David’s needs and control the pain.

One other Doctor sticks out since he tried his best to help relieve some of the swelling in his leg.  While David’s second Oncologist was dismissive, this Doctor at least gave it his best shot by attempting to stent one of the key veins that was causing blockage. While it was not successful, I was grateful that he tried, we were fully aware that it may not work. Of course, we were completely saddened that it did not work, he was so compassionate as he saw me breakdown hysterically.  In fact, I am afraid he may have regretted trying, to the extent that if he sees another patient with a similar profile he may avoid trying to avoid the devastation. He had empathy because sadly he had lost his brother to cancer.

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”.

Breaking the silence – Hospice care

08 Saturday Mar 2014

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The transition to hospice care changed everything since hospice care is essentially aimed at providing comfort and support until the imminent death NOT providing treatment to prevent death. It was the beginning of the end.

The day David began hospice care was the first time we talked about dying and it was the last time. We cried a lot and abruptly ended the conversation. David’s desire was to stay home and this was my desire as well. My Mom staying with us also made this possible, knowing that he was getting the best care and love. I continued to work, continued to maintain a normal routine for the girls. Unless you were in our house, nobody knew the extent of what we were dealing with.

The move to hospice made me angrier. The grieving began, I cried often when I thought I could not be seen or heard.  I became more open with my daughter letting her know Daddy was not going to get better as we were all hoping.

I found it hard to be grateful to any of the staff from the hospice care team.  The end goal of hospice was contrary to my heart’s desire. I was angry each time I saw them for sure they have the wrong house.  In my view, they brought their dirty feet into our home, I wondered what house they were coming from, bringing the germs and illness of a truly sick person’s house into our home.  They just did not belong in our house.  I tried to ensure that I was out of the house before they arrived and returned after the left.

My emotions in no way reflect the good work of hospice staff. They were understanding, did everything to ensure David was comfortable, responded to any need with prompt attention. At the end, they were there with sincere sympathy and support to try to ease the pain of dealing with David’s passing.

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”.

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”.

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”.