Breaking the silence – the medications

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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”.

 

Spring is here

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Spring is here, at least it felt that way last week as my older daughter reminded me that it was the first day of spring.  She said that she wanted to wear a lighter and more colorful dress because it was Spring. She got dressed and was happy, very happy. She went around singing to her own lyric and she sang the following:

All that matters to me today is that it is Spring

Spring is the funnest season

Haven’t you felt the love

Today it is spring, tomorrow is another day of spring

I can finally go to the playground

Even though Daddy is not here, I know I am going to have a great day.

She continued dancing around the house, picked up a picture of David and kept dancing around with it. When she was leaving for school, she put the picture down and said “bye Dad” in a bubbly voice – it was the same way she used to say it when he was alive. It reminded me of another way they used to greet each other as she went to school, she would say “see you later alligator” to which David would say “after a while crocodile”.

And the last thing she said as she walked out the door was that “this spring I will not get any allergies, because i know this spring will be fantabulous with my Mom and my little Sister”.

With her happiness my day was off to a good start also. I am amazed at how the weather could impact ones mood to such extent.  I am also looking forward to Spring and the warmth. While this week is not feeling like Spring yet, like my daughter I want to feel inspired by Spring.

Here she is that Spring morning as she danced around with the picture of her Dad.

Sister, Sisters

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_MG_5239My Sister who moved across country to live in the same state with us almost immediately after we got the news of the cancer reoccurrence. This was a great sacrifice because you left simply to be close to us. You left your job, took a cut in pay but you said you never looked back.  In fact, you did not see it as a sacrifice but rather as the right decision.

Having you closer to us is priceless. David loved you like a Sister. The girls are so fond of you. Each time you come over, they run to you like they have not seen you in ages, even if they saw you the previous day. You are the reason why David cried with joy after our younger daughter was born as he said “I am so happy we have another girl”. With tears streaming down his face, he said “they can be close like you and your Sister, and your Mom and her Sister”.

When we were younger we joked that you always followed me around, now I find myself looking to you for guidance and support. You always have the right things to say or the right approach in different situations. You know me so well, no matter how hard I try to mask my mood, you know when I am happy, sad, or excited. Sometimes, it is like you know me more than I know myself. In fact, David used to call you to reason with me. You knew when I should be ignored or encouraged. I remember the evening before my wedding when I went bridezella over a subtle error on the program at about 2 am and I wanted it corrected, you were the only one that laughed at me until I realized the ridiculousness.

You are always there for me, for us. In the good times you are beaming with me and in the difficult times you have been there to encourage me. You  took the girls to school as David and I ran from appointments to appointments. You took them out to play when we could not.  You were there to listen to me wailing and crying from the torment that cancer brought to our life. After David passed, you never left my side. You took calls for me when you knew I was in no position to talk. You always know when to step in when life gets too overwhelming for me.

Writing this post is making me cry because of the love I have for you and my gratitude to you. We have been close since childhood, we shared a bedroom even though we did not have to. Having you in my life has made the good time even better and the hard times a bit more bearable. This post also made me realize that you and I have very few pictures together.

Below is a picture that David always wanted – “three generations of Sisters” he called it. There is certainly a very powerful Sister bond in this family, one that David and I hope continues with our daughters – who also like sharing the same bedroom and currently they enjoy wearing matching outfits.

 

Strength from blog readers

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It was the week leading to David’s passing that I decided that I was going to start blogging. I told my Sister and she agreed that it will be a good idea. The main motivation was because I had bottled so much up for so long and I felt that blogging will let me get it out.

After David passed, I was also motivated to blog in order to keep his legacy going, hoping it is something our daughters will read as they get older to continue to remind them of the amazing man their Dad was.

The only decision was whether to make the blog public or private. In a complete 180 degree from my usual modus operandi and without much hesitation I decided it will be public. I was inspired to share our story because while we were going through it, it felt like such a lonely world.

What I did not realize was that the readers of the blog (some I do not even know) will be source of strength for me. You guys have empowered me by reading the blog, by sharing your comments, by sharing your stories, with the poems, and by encouraging me to believe I am strong when it does not seem apparent to me.

I thank you so much for reading the blog, sharing your experiences, sharing my pain and anger with me, your prayers, your kind thoughts, letting me know when you can relate to certain posts, and for encouraging me to keep writing. I am sincerely grateful.

My sunshine

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My daughters are truly my sunshine.  They brighten my day, they do not allow me to stay in bed defeated. They are full of energy and love. They show affection, they have passion, they are demanding, they can be fussy and they know exactly what they want. To me, they are perfect, to their Dad they were beyond perfect. I am so grateful for their love.

I chose to start today happy and to be grateful for these girls and the amazing legacy of David that they are. Here are some of the things they have said in the past that continues to warm my heart.

“I love you more than you think I can”

“You are my Mom, you are my Dad, you are part of my Dad and I love you for who you are. I know nobody told you that before”

“Mommy, l kiss your boo boo (then kissed my chest), no more boo boo ok”

David lives on in them and they are my strength and inspiration. They keep the house alive and full of energy.

Breaking the silence – the bed

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I initially titled this post as “the death bed” but it was too hard for me look at that glaring title as the headline.  However, it truly reflected how I felt about this particular bed, the morbidity of what was ahead.

After David came home from the hospital in November, I requested a hospital bed because I knew it would be more comfortable for him. Once it arrived, I hated it immediately. I knew it will be the “death bed”. David looked so comfortable on the bed and that was the only consolation. He spent most of the time on the bed. The bed irked me, I often wondered how many others had experience a similar fate on the bed. I hated the bed. I was ungrateful to those that brought it into our home. It was a painful reminder of the brutality of the disease progression.

The day David died, my first request was to remove the bed immediately. I wanted it to be out the house before our daughters came home from school. In fact, I wanted everything related to his illness to be removed. They reminded me too much of how much the disease had taken from us.

To the credit of the visiting nurse staff, they ensured that items and medical supply related to the illness was removed within 2 hours. Our home was restored to what it should have been. It would have looked normal but how can it be, it was not because the light of our home was also gone. David’s body had been moved to a funeral home.

When they came to take David, I played a song that we (mostly me) listened to frequently after he was admitted to hospice and gave him a goodbye kiss. It was indeed goodbye since we never used to say goodbye, David never liked the word because it was too final but sadly that was goodbye and it was the last time I saw him.

I never looked at his body again because for me, I knew it will bring more pain.  I wanted to remember David as he should be, not laying motionless in a coffin, not dead but with his usual energy and enthusiasm. I doubt that I will ever regret the decision not to see his body again. I recall seeing my Dad in his coffin and it caused me more pain and trauma for many years.

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”.

Tell me stories about Daddy

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_MG_5438It was no surprise that Monday evening ended even crappier than the morning.  As we started homework my older daughter was already getting sad even my younger daughter recognized it and tried to make her happy.

By bedtime she broke down crying, she cried and talked about how much she missed her Dad.  She wondered why he did not get better, why he had to die now, why did he not die when she was older. She asked why she could not see him ever again. She looked out the window hoping she would find a shooting star so that she could wish for him to come back. She cried a lot, we cried a lot, I have had the same questions often.

As she started to settle down a bit she said that when she grows up, she wishes to find someone just like her Daddy.  WOW…I was again dumbfounded because while I know I cannot wish David back, I can truly wish the same for both girls because I know how lucky I was to have David.

I started telling her stories about her Dad.  She laugh hysterically as I told her how David used to dress her up and confuse the front and back of her dresses saying that men clothes are so much easier because the buttons are always in the front. How he used to wonder why girls had to wear tights and lifted her with tights to ensure that it fit just right (this is something we still do). I told her how he used to appeal to me to stop trying to feed her puree baby food such as tender beef spinach which were completely void of taste and asked that I feed her what we could eat. We laugh about so many things and she concluded that “Daddy is silly”.

I tried to assure her that even though Daddy is gone I will continue to do my best to make her happy. She asked that I should not talk about her Dad being gone but rather I should tell her more stories about him to make her laugh.

The best part of the evening was while we were laughing about the story, she said that “I actually forget that Daddy was gone, and for a minute I thought that Daddy was here”.

“Happy Monday”

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How can it be Monday already?

How can it be Monday already?

“Happy Monday”, this is a phrase that David said very often…always trying to be chipper about the start of a new work week.

How I wish I could hear him say “Happy Monday” today. I really could have used it. Mondays just have a way of feeling crappy.  In fact, during David’s illness Mondays were definitely my worst day of the week. Perhaps, it was the reality of going back to work especially if we had a rough weekend coupled with the uncertainty of what another week will bring.

Today, the girls were so cranky mostly because it was Monday and the routine of the week day. While getting them ready, I remembered that it is St Patrick’s Day so I dressed them in green.

I was saddened as I remembered the St Patrick’s day before David’s illness began.  I was away on a business trip and David ensured that he dressed our older daughter in a green dress, he even tried to style her hair.  I was reminded of that day as I picked out the same dress for my younger daughter to wear.  I got  teary eyes as I wished dearly that David was here to dress them and make another attempt to tame their curly hair.

Below are pictures of the girls wearing the same outfit for St Patrick’s day.  One was dressed by David four years ago and the other was dressed by me today.

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The awkwardness of death in real life

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It has been almost two weeks since I returned to work and truly, it has been the right decision. I am so thankful for the support of many of the individuals at work. Returning to work has also revealed to me some of the awkwardness of my new reality especially when people see me for the first time.

Many offered their condolences and showed genuine interest in the well being of me and my daughters.  Others simply pretended like nothing happened at all and proceeded to having work related discussions. There is another group that have avoided me like a plague, they see me coming down the hallway and change directions or try to remain so focused on something like they never saw me.

I am most grateful to those that have asked about me or expressed their condolences regarding David’s passing. Many have gone way above what I can even imagine in the extent of the support they have offered.

The strangest are those that simply pretend like nothing happened. I find those situation to be the most peculiar but perhaps it speaks to the awkwardness of death. But death is something I now have to confront daily. Understandably, it is an undesired life change. If I had gone back to work after getting married or having a baby most of these people would have been fine to acknowledge that and offer their congratulatory messages.

As for those that have avoided me, if/when our paths cross will determine which of the other two categories they fall into.

Below is selfie of me and my older daughter on my first day back to work. I was determined to make sure I did not look crazy, I know David never let me leave the house looking crazy.

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Breaking the silence – the compassionate Doctors

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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”.