Tag Archives: pancreatic cancer

Facing your Own Mortality as a Caregiver

whiteflowersI’ve heard it over and over again. As an adult child moves past their parent’s age of death, they breathe a sigh of relief and can’t help but be surprised they lived past what they thought would be their last breathe. Whether its 50 or 90, we tend to think that we will follow in our parent’s footsteps and there is some scientific proof to back that theory.

Many genetic diseases have hereditary links. For example, if your mother died of breast cancer, this doubles the chance of developing the disease yourself. In the United States, heart disease is the leading killer…. a somewhat inheritable but most times preventable death. Granted, cancer follows at a close second place but many cancers are not genetically linked.

But we all say it and think it… my parent died early and so will I. Or I have genetics on my side… people live forever in my family so I will too. I am not a scientist or even an expert on the subject but I do know how to Google so I was curious… is there any scientific proof that if your parent dies early you will too?

The first article I brought up was http://ageconsearch.umn.edu/bitstream/7145/2/dp060004.pdf which surprisingly cited a number of studies that showed there is NOT a strong correlation. Dr. Roizen on http://www.sharecare.com/health/longevity/how-parents-lifespan-affect-lifespan states pretty much the same thing. He cites the Framingham Study as the most comprehensive and summarizes that they found, “about a 6 percent correlation between life span of the parents and life span of their offspring, meaning that many other factors affect longevity as well. If both your parents lived past the age of seventy-five, the odds that you will live past seventy-five increase to some extent. …. Some genetic conditions, such as being a carrier of the BRCA-1 breast cancer gene…. is one of the instances where genetics can make a big difference.”

So science says not to worry… just because your parent died at 61 (the age my Mom died) does not mean that you will too.

Phoooey on that. Facts are one thing but emotions don’t always follow facts.

I was okay when my mom was dying because I was so busy caring for her and I didn’t have the time to consider my own mortality. After her death though, every little illness became monumental. Bloating? Probably stomach cancer. Respiratory issues?… couldn’t be a cold or just that I was out of shape and fat… it was probably the start of something serious and life threatening.

I began to look at my kids and wonder if I would see them have their own children. Would I see them married and with gray hair or would I be long gone and just a picture on their end table? Would I have the chance to cuddle my grandchildren? Tell them stories and watch them so their parents could have a night out.

People tell me I am like my mother. I am in many ways… and in other ways I hope not…. despite me loving her fiercely, she still drove me nuts. We both have the same issues with weight and similar health issues too — thyroid and arthritis among them. If we have the same health issues, then won’t pancreatic cancer fall into my bucket as well? She was one of the more health conscious in her sibling group — she ate a nearly organic diet, worked daily on the farm, drank rarely and never smoked. She should have lived the longest but she died the youngest of six siblings. Doctors really don’t know what causes the type of pancreatic cancer she had. They say its not hereditary but since they don’t know what causes it I am not ruling genetics out.

Good things have come from the worrying. I took a good look at my life and priorities and decided I was spending way too much time at work and not enough with my children. My youngest daughter informed me I had never chaperoned one of her elementary school field trips. I couldn’t imagine that to be true but when I objected and tried to come up with an instance, I realized she was right. I had been too busy running my company and volunteering for causes, that while they were important and life changing for someone…. they weren’t life changing for my children. My children wanted their mother to show up and be in their lives. I am typing this now at my son’s track meet. Earlier today I attended my daughter’s volleyball tournament. In the past year I have attended lots more events than I have in the past. Its taken some creative methods – I bring my laptop and between matches or heats I work where I can. I have to get up earlier than I may like to get the horses fed or the laundry done. I also divided my job at work so I was no longer doing three jobs and failing at all three because I wasn’t superhuman like I wanted to be.

But I have enjoyed it and I know its the right move. So there is some good in worrying you are going to die young but I don’t recommend it or think its more good than bad.

People throw around phrases like “seize the day” or “you only live once”. You do need to seize the day and make the most of it but not at the detriment of your future. I know I need to believe that I have a future past the age of 61 but I have to admit that I will breathe a big sigh of relief when I pass it.

Drug Chart for Caregivers, Doctors and Helpers

As my Mom’s illness progressed, more and more drugs came into our lives.   I started to get an education in medicine I never wanted.   Over and over again I had to tell each new doctor which meds she was on currently and which ones she had been taking.   My Mom tried to keep the drugs straight and take the right ones at the right time but her health was compromised and sometimes her judgment so it was difficult for her.  To further complicate things, many neighbors and friends were helping care for her and they were not familiar with the various drugs and when they should be taken.

I eventually came up with this Excel spreadsheet to help me track them.   I printed one off each time we visited a doctor and handed it to them when we arrived.  I provided a date at the top so there was no confusion about which version was the most up to date.  I also put a copy under her meds in her bedroom so as caregivers came in they knew the most current information.

Doctors loved it.  Don’t assume they know exactly what your loved one is taking.   At some point there will be multiple doctors involved and each are prescribing different items.  Its important your loved one have a primary caregiver who is the central point of information and this chart helped me immensely. By the way, the link is to the last updated chart before her death so it may give you a good idea of potential drugs your loved one may be taking if they have pancreatic cancer. The one shown below is a version modified to fit the space of this blog. Medications that are bold are ones she was taking currently.

Link to Spreadsheet with actual drugs she was taking and a second tab with schedule

Medication dosage What to Take What it is For When
lidoderm patch 5% pain patch as needed 12 hours on, 12 hours off
advil 200 mg pain 1-2 tablets as needed
oxycodone 5 mg pain 1 tablet as needed every 3-6 hours
Coumadin/ warfarin 1 mg blood thinner 3 tablet daily dinner
levothyroxine/ synthroid 112 mcg/175 mcg thryroid 1 x per day morning
omeprazole dr 20mg acid pill 1 per day morning
metoprolol 25 mg irregular heart beat 1/2   per day morning
miralax single dose laxative 1   dose morning
lasix 20 mg diuretic every   other day morning
senokot stool softener 2   x day morning/night
pancrelipase 5000 usp units digestion 1   with each meal
zofran/ ondansetron 4 mg 1st nausea 1   tablet as   needed
glucophage 500 mg 1   tablet twic daily

How I Became a Caregiver.. The Story of my Mom

Mom and Dad six months before her death

Mom and Dad six months before her death

“Mom is at Johns Hopkins and they think she has pancreatic cancer.”

My stomach dropped.  The call was from my sister and it came while I was at a conference across the country in San Diego.  How could that be true?  She was fine when I left just two days ago.  And what was pancreatic cancer?  How serious was it?  Lots of people survived cancer – maybe this wasn’t one of the bad types.

I quickly started searching the web for information on pancreatic cancer and what I found was not promising.   With a five year survival rate of just 5%, it was one of the most deadly cancers.  Most people were dead within three months of a diagnosis.  Our best hope at this point was that the doctors were wrong and it wasn’t pancreatic.

When I was finally back East and able to walk into her room, I found my usually vibrant and active mother prone on the bed and the color of a pumpkin.  The tumor was cutting off her liver and not allowing it to process the bile, thus the orange color.  By now, they had definitively diagnosed her with pancreatic cancer and had scheduled her for a Whipple procedure.  A Whipple procedure is where surgeons remove the pancreas as well as the upper small intestine and part of the stomach in the hope of removing the entire cancer and if not, at least staving off the progression of the disease for a bit.

Unfortunately when they went in to complete the Whipple the surgeons realized her liver was compromised with cancer as well and so they aborted the Whipple in favor of removing the half of the liver that was most covered with cancer.   The liver is a remarkable organ in that it can regenerate so even removing half of it, the liver will eventually regenerate and grow back to its original size.  The goal was to wait until the liver at least partially regenerated and then complete the Whipple when her body was better able to handle the stress.

So four months later she was back at Johns Hopkins for the Whipple.  In the meantime, she lived her life as normal.  She may have been a bit more tired or worried, but for the most part it was hard to believe that this healthy looking woman who was busy volunteering and loving her grandchildren had cancer ravaging her body.

The Whipple is a highly invasive and dangerous surgery and my mother did not recover well from it.   She did not wake from the surgery for four days and was in intensive care for nearly a week.   On a Sunday afternoon after the surgery, my Dad called.  “Bri, I think you should come up today if you want to say goodbye.   I had the priest come and do Last Rites – I don’t think she is going to make it.”  He sounded calm but as if he was working hard to stay calm for our benefit.   Resigned to the fact that he was going to lose his wife.  That life as he knew it was about to change.

She didn’t die.

The next day she opened her eyes and while the breathing tube was still in she was unable to talk, she began to communicate with us via eye and arm gestures.  I made a board with the alphabet on it so she could point out what she was trying to tell us.  Even though she was weak and it was a miracle she was alive, her biggest concern was the time her family was “wasting” at the hospital being with her.  At one point, she struggled for several minutes to complete a sentence – she wanted to know how the nurse that was caring for her was doing as she was not feeling well the day before.

That was my Mom – she was always concerned more about the people around her more than herself.

I brought her home to my house and she slowly recovered.   It took three months but eventually she was able to go home to her own house.   The time she spent with us was hard at times.  It wasn’t easy to take care of my regular family duties and my full-time job on top of her medical needs.  She had open wounds that needed to be cleaned and drained and because she had MRSA, it involved surgical scrubbing before and after and using disposable gloves.

It was also funny and heartwarming.  She was on some powerful painkillers that caused hallucinations.   Perhaps its wrong to laugh but my goodness, it was hilarious to see her trying to kiss my one of my children who were in reality not in the room at all.  One time she kept insisting that she wanted something to “put on her stomach”.  I tried pillows, blankets and even a stuffed animal thinking that the stitches from her wound were causing her pain.   “No…. I need something on my stomach.”  Confused and out of options I finally figured out that she was hungry.  The words just didn’t come out right when the drugs interfered.

My daughter slept on her floor so she could be closer to her.  My mother helped her with her homework while they snuggled in the evenings.   My sons checked in with her each day when they came home from school.  It was a good time and I missed her when she went home.

Life continued.  She still had cancer but I think as a family we tried to ignore the ugly black cloud that was always in the back of our minds.   Each time we celebrated a milestone it was bittersweet.  We were glad she was there to see it but recognized that it may be the last time.  In particular I remember one Halloween.   It was a fun day with laughter and love.  The kids dressed up and canvassed my sister’s neighborhood for candy.   My Mom and a few others stayed back to hand out candy and then we all gathered for a comforting autumn meal.   The smaller kids crawled on her lap and at one point she looked like she had four pairs of arms and legs with the coverage they were providing.  She purred with contentment.

It was days like this that were both the best and worst.  What should have been simply a great day with family, cut deep with the vinegar that it may be the last time that we experienced a Halloween with her.

My Mom lived three and half years after her diagnosis.  I am so glad for the bonus time we gained but it was also painful at times knowing that we were on borrowed time.  Despite our family being outspoken and honest and forthright with one another, we still did not discuss many of the things that are difficult when living with someone with a terminal illness.    How do you turn to someone you love dearly and casually ask, “so have you thought about how you want to be buried?”

This blog is to help others through this path.  Hopefully the things that I and others have experienced will help you on your journey.  Its not an easy one but there can be happiness and love and yes….. even some good things that come out of the experience of moving towards death with a loved one.