Prelude to a New Beginning

A park near our new home, on a rainy day adventure.

A park near our new home, on a rainy day adventure.

 

For a long time I stared at this blank page and wondered where to begin, at what point of our new beginning I should start from, and I came up as blank as this page was.

But then I realized that I needed to start where one story left off. Because really, it’s why this new chapter had to begin.

My Father.

He suffered, recovered and then dealt with all that Esophageal Cancer can give. He had chemo, radiation, and multiple surgeries. He had double pneumonia. He had Liver dysfunction. He had many infections. And through it all he was his positive best.

And I was a mess. Sitting in India, waiting for a sluggish US Immigration system to finally accept that my marriage was real and give my husband his green card so that we could join my family in the US.

Finally, our struggle was over and we began packing our lives up in to 10 suitcases, purchasing plane tickets and preparing for our long journey to our new home.

We arrived at Dulles International Airport on December 19th, 2012. My younger brother came in our step-brother’s large truck to help us cart our entire luggage home. It took two hours to clear Immigration. It felt like a longer wait than the Green Card was. But finally we were cleared and with the help of a very nice attendant, got everything loaded up and was ready for our final two-hour trip home.

When we arrived, my father was in the hospital. He had edema and severe liver dysfunction. He was hospitalized for four days. He finally came home two days after our arrival. Frail and thin and with very little energy, I found that the ashy face of my father no longer the positive one I had known.

He suffered from extreme anxiety and depression. We couldn’t leave him alone in the house for longer than 5 minutes without his having an attack and calling us from his cell phone. He couldn’t get out of bed on his own and fell several times in the night. Bear and I set up a schedule where we all took turns, my Mother, Bear and I, to get up with him in the night to help him to go to the bathroom.

He began to lose weight rapidly. From the time he was released from the hospital to January, he weighed 140-145. By mid to late February he weighed in around 135 and we began new doctor’s appointments to find out the cause. He was getting B-12 shots every 2 weeks. Getting blood work. Having tests run to find the reason his Liver was leaking proteins. He had no energy and began sitting in a chair all day long, snoozing during his favorite TV shows.

By March first he weighed in at 128 and we were terrified. Finally, one of his doctors ran a fecal test and found that Dad had C-Diff. It’s an extremely contagious infection of the lower bowels that does not allow nutrients to be absorbed by the body and causes severe diarrhea.  Dad, already taking 15 medications daily and complaining bitterly about each little pill, was put on yet another medication to help clear up the C-Diff.

After two rounds on of the medication for C-Diff, he was finally deemed recovered. His weight was up to 133. After another week, they felt he was strong enough to have a biopsy done on his Liver.

Back to the hospital he went. I stayed with him for 9 hours. Through the biopsy. Through admission. Feeding him when he was hungry because the meds they gave him made him weak and groggy. Then I went home to rest. We learned from the biopsy that his Liver dysfunction is normal and due to long-term diabetes. It’s stabilized and they have changed some of his medications around to help delay any further damage.

Now he’s recovering, if but slowly. He’s going to physical therapy to help gain back muscle that he lost and to a psychologist to help gain back his mental strength as well.

He’s driving himself again, if only for small trips. We no longer have to have someone stay at the house with him. He’s fine being left alone again. He’s able to get up in the middle of the night on his own. This last one is in no small part due to Bear.

Bear spent every moment with my Dad, watching him and analyzing. He came up with ideas to help Dad eat differently (and not get so tired or choke while doing so). He found a way for Dad to lay on the bed that would enable him to get out by himself. He encouraged Dad to use his arms for support when walking, touching the walls or furniture. He reminded Dad about his medicines or to drink more liquid.

Bear also had to care for me. I ran myself ragged during those first couple of months back home. We lived with my parents for some time to help them get strong again and to give my Mom a break from caring for my Dad 24/7. I ran up and down steps 6-8 times a day. I made three meals a day. I cleaned and then cleaned again. I did laundry, washed dishes, vacuumed, changed bed linen, washed the tub, picked Dad up off the floor and then got up to do it all over again the next day.  I began seeing ways that my Dad was taking advantage of this. If I was there to ask, then he would…knowing I would do it. But then it robbed him doing it for himself and showing that he COULD to something to himself.  We began to argue. Me begging him to do things I KNEW he could do and him crying that I just didn’t understand what he was going through. Guilt.

And so I landed in the hospital myself. I was in the ER for 8 hours while they checked to be sure that I wasn’t having a heart attack. No, it was a severe panic attack. And so it was that I too was put on anti-anxiety medication.

But Bear. My loving, considerate, intelligent, patient, wonderful Bear. He was all our rock. He was stalwart against any storm we brewed. He took care of us all. Even while he spent hours a day applying for a job, he would drop that to go when Dad or I called.

My husband is perfect. Have I ever mentioned that? Yes? Well…it never hurts to remind someone.

So now, Bear has a wonderful job that he is very happy with and only 30 minutes away from my parent’s home. We moved into our own home the first week of April. We’ve moved to a lovely and very small town 5 minutes away from Bear’s work.

We can hear the birds singing, church bells chiming and the water in a small brook behind our home.

It’s clean and peaceful and the air smells like fresh-cut grass or newly bloomed flowers.

Everywhere you look here, it’s a painting. A picture of perfection and beauty waiting for you to behold. We never get tired of looking about us and thinking how good life is. How peaceful. How serene.

So that’s it.

That’s my story up to date. It may be a little thin on the details. Never fear, I’ll get around to telling those soon enough. The joys of packing a life into 10 pieces of luggage with weight restrictions and nothing but a body scale, for one.

But I wanted to take a moment to check in with you all and let you know that I haven’t forgotten about this blog or any of you, faithful readers.

I just need some time to settle in and calm down.

But rest assured the time is coming soon that I’m going to have some tales to tell.

 

©2013 Gori Rajkumari

 

 

 

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Clinical Trials

In my last post I promised to touch on each one of my bullet points.  This is one of those.

  1. My father was diagnosed with esophageal cancer and is being treated with chemo and a pending surgery.

Yes.  So.

I had thought that cancer only ran on my mother’s side of the family as no one on my father’s side had ever had Cancer or so the records and memory tells us.

But my Dad had to go and be a rebel and get something all new and junk.

Here is what Wikipedia has to say about Esophageal Cancer.

Esophageal cancer (or oesophageal cancer) is malignancy of the esophagus. There are various subtypes, primarily adenocarcinoma (approx. 50-80% of all Esophageal cancer) and squamous cell cancer. Squamous cell cancer arises from the cells that line the upper part of the esophagus. Adenocarcinoma arises from glandular cells that are present at the junction of the esophagus and stomach.[1] Esophageal tumors usually lead to dysphagia (difficulty swallowing), pain and other symptoms, and are diagnosed with biopsy. Small and localized tumors are treated surgically with curative intent. Larger tumors tend not to be operable and hence are treated with palliative care; their growth can still be delayed with chemotherapyradiotherapy or a combination of the two. In some cases chemo- and radiotherapy can render these larger tumors operable. Prognosis depends on the extent of the disease and other medical problems, but is fairly poor.

Apparently my father got this cancer from a long undiagnosed and ignored issue with acid reflux, a long time in smoking and most likely spending his career working in a pharmaceutical manufacturing plant.  Lots of cool things to breathe in there.

Anyway, it’s apparently NOT a genetic cancer.  And that’s the good news.  Not like it’s going to keep popping back up if he takes better care of his acid reflex.  And it can be cured with chemo and surgery.  Another good news.

The bad news is that because this form of cancer exactly mimics having heartburn or acid reflux, most people don’t think anything more of it after taking an antacid or Pepto and going about their day.  Until it’s basically too late.  This is one of the rare forms of cancer that is not genetic, completely treatable, low rate of return and yet a very high rate of death.  Because most people don’t know they have it until it’s too late.

Thankfully, my Dad went to see a doctor after having issues with weight loss, extreme tiredness and difficulties swallowing.  They found he had a low B-12 and white blood cells.  So, they gave him a treatment and shot and sent him home after running a plethora of tests.  One week later we got the results.

And now he’s been on a course of chemo with a stint in his chest to allow a 24/7 drip of that poison into his body for the last eight weeks.  In four weeks, he’ll go in for surgery to remove the mass, which is smaller now and operable.  Four weeks after that he’ll go back on the eight week chemo course to be doubly sure.

The Doctor and Surgeon both gave my Dad a very high rate of survival and cure.

I could breathe again.

All the way in India.

While he was in the US.

Too far.

Anyway, this then, will be when the healing will begin.  The hair will start to return.  The thrush will stop reoccurring.  The tiredness and the yoyo emotions.

And I’ll have my happy-go-lucky Dad back again.  Full of naughtiness and sparkle.  But for now, I am his naughtiness.  I am his sparkle.  Me and his friends and all the people who step in to keep him smiling.

For someone with Cancer, the road is long and hard.  You have all the fear that is associated with the word Cancer plus all the benefits of its side effects.  You watch the faces of those around you for tension or fear and pretend you see it even if you don’t.  You struggle to remain who you were before and become frustrated with a body that just can’t keep up.

For the rest of us, living outside of that, we watch.  We pray.  We cry privately.  We make wishes on stars.  We negotiate with God.  We make promises we aren’t sure we can keep but we’re going to try anyway.

And we all live life.

For more information on Cancer, go to http://www.cancer.gov.  (http://www.cancer.gov/cancertopics/types/esophageal)