Monthly Archives: March 2014

Spring break vacation

30 Sunday Mar 2014

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Since school will be out for spring break, I plan to take the girls on vacation. It was a vacation we planned last year but could not make it and we kept postponing it due to David’s illness. We always remained optimistic that he would get a “break” and would be able to take the vacation…sadly, it was not the case.

My older daughter has been counting down to the break and frankly, I was looking forward to it as well.  Now I am overwhelmed, saddened, and afraid of going on a vacation without David, our pilot. How are we going on a vacation without David? How would I handle seeing other families that seem complete?  How will the kids handle seeing all the other Dads?  Is this life as I know it now?

David who always tried to ensure that I do not wait until the last minute to start packing (he never succeeded). David who always laughed at the amount of luggage I hauled as he fit all his items in a carry-on. David who could navigates well with an old fashioned map, in fact I think he secretly preferred it to the new age car navigation systems. David who put the “r” in relaxation once we get to our final destination.

I am also saddened as I realized that we will never have a family vacation picture with all of us in it. The last vacation we took together, how I wished I approached a stranger to take a picture of all four of us together. There is no more opportunity to do this and I am still beating myself up for that.

I know I will be constantly reminded of David on the vacation. I just hope sweet memories will get me through the sadness of missing him. I also hope that the girls will have a nice time even as they are reminded that we are incomplete without David.

The picture below is the closest to a family picture from our last vacation as we alternated taking pictures.

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It is a raining day

29 Saturday Mar 2014

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I have never liked rainy days. Prolonged rain has a way of making me feel sad. David actually loved the rain. He used to sit outside in the rain and listen to the rain. He found it very relaxing. He wanted an awning over the deck so he could sit comfortably under and enjoy the rain. I remember one stormy day as he sat on the deck listening to the rain, I insisted it was dangerous and made him come inside as he tried to argue that my concerns about lightning were unfounded.

Today, as it continues to rain, I feel depleted of energy and have a strong sense of the loss of my dearest David. I wish he was here so badly. I fell asleep last night looking at pictures, I continued again this morning. I am reminiscing and I want to believe he is still alive because I am having a really hard time dealing with the fact that he is not.

As I looked through pictures I found some pictures I thought I had lost, they made me happy as I remembered the good old days. Sadly, such days are never to be experienced again with David. But I will hold on to these pictures and the memories because I remembered the day vividly and it was a fun family outfitting as we went to watch our first (and last) football game like an all American family rooting all the way for UConn.

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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”.

 

Spring is here

26 Wednesday Mar 2014

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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

24 Monday Mar 2014

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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

22 Saturday Mar 2014

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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

21 Friday Mar 2014

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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

19 Wednesday Mar 2014

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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

18 Tuesday Mar 2014

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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”

17 Monday Mar 2014

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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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