Gifts for Gastrectomy Patients

And yet…I’m happy and I’m at peace.  I have no regrets about my past and I look forward to my future.  I get up each day and put a smile on my face, I make the most of each day and I don’t worry about what the future holds.  I have very little…but I have enough.

That night in the ER was a turning point in my life and the days since then have not been easy but I would not change a thing.  Those days have brought me here, where I ought to be…

Since my doctor’s office is just down the street, I stopped in to make an appointment after my dental appointment.  ”We have an opening in 45 minutes,” the receptionist said…so I went next door to Starbucks and got a cup of tea and a piece of banana bread while I waited.  Now, if you’ve read my recent posts, you’ll know that I’ve been gluten-free for a couple months after realizing that my body was having some intense reactions to gluten.  Banana bread is not a part of my diet these days BUT…I wanted to stimulate a reaction prior to doing bloodwork so I ate gluten.  I discussed my symptoms with my doctor, we did the bloodwork and we’re awaiting the results….

That afternoon…I went home and dealt with the effects of eating gluten:  fatigue, nausea, cramping.  I slept off and on for the rest of the day.  

Soon, it will be time to put my “nose to the ground” and get back to the work of writing.  There is much to say in my blog and much to be updated on these pages.  As the seasons change and life settles back into a routine, I’ll have more time and energy to focus on writing…I’m excited about that…

For now, life calls….

For more than a year, a very difficult financial situation…the result of the current economy, medical expenses that take half of my income, and other issues beyond my control…has necessitated that I work seven days a week, sometimes 12 – 14 hours per day. Living life at this frantic pace, I abandoned my previous attempt at a gluten-free lifestyle and opted for a diet that included bread…convenient, cheap and easy to eat on the run. Over the past year, I’ve noticed symptoms return as my body weakened, both familiar and new, and I want to record these thoughts as I make changes and return to a healthier lifestyle…

Warts:  A few days ago, I noticed a very small wart on my right hand. When I had gone gluten-free a couple of years ago, warts that I had had for years completely disappeared. The appearance of this one tiny wart was the clue that suggested to me that perhaps I should consider removing gluten to see if my health improved.

Shoulder Pain:  For nearly a year, I’ve had increasing pain in my right shoulder (and occasionally other joints) which I now suspect may be related to gluten intolerance. Yes…I could just be getting old! …but, given the cluster of other symptoms that I’m experiencing, I’m curious to see if my shoulder pain improves as I remove gluten from my diet.  I have limited mobility in my right shoulder:  I can’t cross my arms or put my right hand on my hip and I can’t raise my right arm over my head or put my clothes on without difficulty.  I often have a sharp pain when lifting objects and I’m much weaker in my right shoulder than left.  In my reading about celiac disease, I understand that joint pain can be related to gluten intolerance so I’m curious to see if the symptoms improve with dietary changes.  I can’t afford to see a doctor for the condition and don’t want to diagnose a new “pre-existing condition” before my health insurance changes in August, so this is a situation that I’ve been living with for months.

Digestive Disturbances:  As I look back over recent weeks and months, I realize that I have been reacting to gluten in my diet with increasingly dramatic results. A couple of weeks ago, I ate one waffle for breakfast (it was all that I had to eat before leaving for work) and later had to go home sick from work with extreme intestinal cramping. I NEVER go home “sick”…but, I was not going to make it through my shift and I spent the rest of the day in misery. The reaction is not always the same, or as dramatic, but I have had numerous immediate reactions to eating bread….nausea, dry mouth, sweating, dizziness, cramping… I don’t feel well after I eat bread and as much as I hate to give it up, I feel so much better when I eat foods that don’t contain gluten.

Insomnia:  I work a lot.  I work three jobs, seven days a weeks, sometimes getting home at 2:30 in the morning, often gone from home for twelve hours or more at at time.  I work and I rest…and I try to squeeze in tiny meals when I can.  Lately I’ve had difficulty sleeping more than three or four hours a night even though I’m thoroughly exhausted and I’m hoping that a gluten-free diet will help.

Obviously, there are other lifestyle changes that need to be made in addition to removing gluten from my diet.  In August, I’ll have health insurance through my employer and will finally be able to give up the expensive private health insurance that I’ve had for years.  This will make a big impact on my financial situation and has allowed me to leave my two part time jobs.  Beginning in August, for the first time in fifteen months, I’ll have two days off a week…a “weekend”.  Imagine!  :)  I’ll have the time that I need to cook for myself, get the rest that I need…and hopefully my health will improve.

Like many, I keep my prescription drug costs down by using generic drugs when they’re available. Prior to this year, I didn’t have prescription drug coverage so keeping costs down was particularly important since I take several medications for conditions related to my partial gastrectomy and epilepsy. As of January 1st, and thanks to the Health Care Reform bill, my insurance plan now includes prescription drug coverage.  Now, admittedly, the result is that I still pay the same amount out of pocket for my medications, my annual deductible has gone up (now $2500, I believe) and my office co-pays are now $35 instead of $20….BUT…the amount that I spend on my prescription drugs ($150/month) now counts toward my annual deductible. I guess that something….

The reason that I wanted to write today is to share an experience that I had with one of my generic drugs over the past month. One of the medications that I take is Levetiracetam (generic Keppra), an anti-seizure medication which I take 1500 mg, twice/day. Normally I take one 1000 mg tablet and one 500 mg tablet to cut down on the number of tablets that I take but, when I refilled the prescription on January 24th, the pharmacy was out of the 1000 mg tablets so they gave me what I needed in 500 mg tablets. At the time, I still had some 1000 mg tablets so I continued using them until they ran out then simply took three 500 mg tablets of the new prescription refill twice a day. As the month of February went on, I found myself becoming depressed and sleepy; symptoms that gradually increased over the course of the month. Other symptoms were occurring, too, but I didn’t recognize what was happening at first. Then, last week, after a week or so of obvious depression, lack of concentration and a desire to sleep all of the time, I decided to call my neurologist. The only change that I could attribute my symptoms to, I explained, dated back to the refill of my prescription in January. After talking with me about my symptoms, the nurse called the pharmacy and talked to them about the medication that I’d been given. It turned out that the 500 mg Levetiracetam tablets that I’d been given came from a generic drug manufacturer that the pharmacy had been having some issues with regarding the consistency of their medications. My neurologist and pharmacist advised me to switch immediately to the 1000 mg tablets (which were now in stock) and my condition improved within the next few days.

I share this as a warning to other generic drug users. I had not changed my dosage….to my knowledge….and I hadn’t honestly paid attention to who was manufacturing my generic drugs from one refill to the next. I will pay attention from now on.

“A single event can awaken within us a stranger totally unknown to us. To live is to be slowly born.”

-Antoine de Saint-Exupery

I keep a journal in which I collect quotes, poetry, prayers and thoughts which have inspired me and to which I frequently return. After making an addition to my journal today, this quote caught my eye and it seemed an appropriate follow up to my recent post.

Today I celebrate my third “Cancerversary”, the anniversary of the day when an ER doctor asked, “Did you know that you have a mass in your stomach?” I use the word “celebrate” because I look at cancer as a positive event in my life, and I’ll discuss that more later but first I’ll address how I’m doing physically…three years after “Dorothy” entered the woods with a little red & white dog at her side….

I had my annual CT scan and blood work on Monday and the report was good…no sign that the cancer has returned. My oncologist, however, was shocked to see my condition. This morning I weigh 105 pounds and I’m a svelte, size “00″, the envy of most women my age. While I have to admit that I’m not unhappy about my appearance…fully clothed…I know what lies beneath: ribs, spine, pelvis, veins, tendons, muscles…all clearly defined. Earlier this week, I hit my all-time low – 104 pounds – down 13 pounds from my weight on January 1st of this year, 8 pounds less than I weighed when I went back to work in May. Now, instead of seeing Dr Cui on an annual basis, she wants to see me every four months.

In the past week, I’ve also experienced three severe incidents of acid reflux during the night, burning my throat and esophagus, leaving me in extreme pain. This is a situation that has developed since going back to work and increased in frequency in recent weeks. Allowing this condition to continue could lead to Barrett’s Esophagus and potentially esophageal cancer so I’ve been in contact with my gastroenterologist this week to discuss my treatment. He’s switched me from the inexpensive generic, Omeprazole, back to the expensive, Protonix, and I need to make an appointment for another EGD to assess the condition of my stomach and esophagus.

I’ve also visited my neurologist recently and I’m happy to report that it’s been more than a year since my last grand mal seizure…thanks to large doses of Keppra and Topamax that I take twice a day. While I’ve been seizure-free, I could not say that I am neurologically 100%.   My ability to eat and my ability to concentrate are linked, making it difficult to eat at work and contributing to my struggle to maintain my weight. If I eat while on my break, I’m uncomfortable and I find it difficult to concentrate on my work for the next two hours so, for eight hours/day (spent on my feet) plus 2 – 2.5 hours commute, I eat very little.   When I’m at home, I eat as much as I can, but my stomach can only hold so much and if I eat too much, I have to lie down and sleep for two hours.

Work is obviously taking a toll on my health so I reduced my availability this week from seven days/week to six days/week.   I’ve spent half of my income this month on medical bills and prescriptions…and I still have $1400 in medical bills sitting on my desk, prescriptions waiting at the pharmacy, bills to come and appointments to schedule.  I work to pay for my medical care…and, in the process, I make myself worse…..

Beyond the physical….

I chose the picture above because, in spite of the stark conditions and the perilous perch on which it stands, this tree somehow continues to grow and the sun continues to shine.  The tree looks out on a vast ocean of possibilities, it looks below to the solid rock upon which it stands and above to the sunlight which gives it strength.  Like this tree, I have weathered a lot in the past three years and while my body has weakened and at times I am emotionally frail and drained, my soul is hardened steel.

At the heart of Buddhism is the Budhha’s teaching of the Four Noble Truths and the First Noble Truth is that life is suffering, “dukkha”.  ”Dukkha” is something that we all share and it is that which brings about change.  Change is often not a comfortable experience and it can happen suddenly or it can be a slow, evolving process with an uncertain future.  Acceptance of change and the patience to accept change in its own time are two of the ways that I’ve grown over the course of the past three years.  ”Dukkha”, properly understood, presents an opportunity to grow, to change…and that is what I have been given….

I have also been given Grace from God.  I’ve always been a very spiritual person and the last three years have been three years of great spiritual growth for me.  My faith is the rock on which I stand, the sunlight that lights my days and the wind beneath my wings…..

My blog began in November 2007 following my diagnosis with non-Hodgkins Lymphoma. I spent hours each day answering phone calls and e-mails from family and friends who had just heard the news and while I was grateful for all of the support that I was receiving, I also needed time away from the phone and the computer to learn about my disease and to take care of myself. A blog was a perfect way to share frequent updates with distant family and friends.

As time went on, my audience changed. Friends and family still touch base from time to time but when I started to hear from other cancer patients, my blog took on new meaning for me…and now, I write for them. Over the last three years, I’ve heard from many cancer patients (or their family members) from all over the world, often recently diagnosed, and, through my blog, I’ve been able to communicate with them privately, answering their questions and concerns, sharing my experience in more detail.

When I was battling cancer, I read many blogs and memoirs of other cancer survivors who generously shared all that they had been through in fighting their disease. Those memoirs were comforting to me and I used those memoirs as my model; I held nothing back. If it would help a cancer patient relate to me, if it would help them to understand the path before them or take away some of the fear about a procedure or treatment they might face, I shared what I went through. I have kept just one very important parameter, however. The comments in my blog were to be about me and my experience. I chose to make my experience very public…no one else did. If a story had “a happy ending” or a “positive thought” to share involving someone else, you might find it included here but my posts are primarily about my own experiences…not out of narcissism…but out of a respect for the privacy of others.

Cancer can take a toll on so many aspects of the patient’s life. Not only do they face the obvious physical challenges of the disease that they battle, but the emotional strain can be overwhelming. Not everyone has the kind of support that they need from family and friends to get them through their time of crisis and cancer can often strain relationships. In the United States, the cost of medical care can be overwhelming, too, and trying to navigate the health care system when you should be focused on getting well sometimes seems cruel.

Telling my whole story would be much more involved than simply talking about my battle with cancer and epilepsy. I’ve faced challenges that lie outside the parameters of my blog…things I would freely share if not for the embarrassment that it might cause to those who did not choose to publicly blog about their lives. Sharing the emotional and financial strain that I’ve faced over the past three years might be helpful to those going through a similar fate but, for the sake of those who would have to be named in the telling, that aspect of my story must remain private and I must choose the high road…

This Scottish Highland cow has nothing to do with this week’s vocabulary word, of course….just a random photo from Flickr that amused me.

I recently asked my gynecologist if it would be a good idea to do a bone density test, given my history and current condition. He agreed and I had the exam done last week. Using very low dosage x-ray, the density of the lower spine and one hip is examined…and the result: I have osteopenia. Nothing to worry about at this point but, I am beginning to lose bone density. I was advised to take 2000 IU of vitamin D daily and calcium twice a day (something I already do anyway)….no need for medication at this point.

I have several risk factors that make me prone to osteoporosis. My stomach surgery may have affected my ability to absorb calcium. My cancer treatment and the medication that I take for epilepsy and for my stomach can all contribute to bone loss and decreased ability to absorb calcium. Chemo sent me into an early menopause and my epilepsy seems to be hormone sensitive so I am not on HRT. I’m very thin with low BMI…another risk factor. Visit the Mayo Clinic web site for more information about osteoporosis and osteopenia.