Days of Chemotherapy

person holding laboratory flask
Photo by Chokniti Khongchum on Pexels.com

-Dr. Wang and the entire staff in the Cancer Center at Lake Regional Health System in Osage Beach, Missouri is wonderful.  Everyone is patient and acommodating and at the time I was volunteering in the infusion lab.  Watching those people progress, regress and smile all the way, made a believer of me. Faith was the answer. Everyone had some belief of a Power working in their lives.

Care and compassion and lots of smiles!

There is a lot that goes on with chemotherapy that we would soon learn. First the consultation, then the surgery to place the port for the infusion because he has very small veins. At last, the same day the surgeon placed the port, it was down to chemotherapy for the first infusion.

The cancer drug is not ready until a blood test is done to make sure all the blood numbers are good.  When that is approved, the chemo will be made. The excessive cost of the drugs prohibits the making of them until it is a GO.  Next he and I would sit for a hour of infusion, but he loves crosswords and he always amused himself.  Yes, he would rather have been playing golf, but he accepted what he needed to do and all went well. He would tell me throughout his time of treatment that life is too short to be overly concerned with things that can’t be changed.  Did he wear out the Serenity Prayer…

Still playing golf about 3 times a week, he did need a nap in the afternoon.  That was no big deal. I was estatic that he felt so well.  A few bumps in the road–a nasty little rash and losing a little hair but not all.  Pretty good I’d say.

There would be chemo once a week for 3 weeks, then off a week.  That schedule continues for 6 months and I will tell you that every 3 months there was another cat scan and another CA 19-9 test done by blood draw.  That is a cancer marker that will show cancer and not to be relied upon as a total indicator but is used with other diagnostic tests to show progress of the cancer.

Radiation began but for only 2 sessions.  A newly found report from the surgery in St. Louis indicated the extent to which the cancer had already metastasized even before the beginning of Chemo.  Reports got mixed up somehow and now the radiologist spelled out the problem with continuing to radiate the tumor in the pancreas. If those little growths found during surgery developed, they could not be radiated if he received a full treatment.  Just so much radiation is tolerated in one area.

The first CA 19-9 had a reading of 238 and at one point during the second 3-month session it lowered to below 50.  At the end of the 6 months of chemo, the doctor sent my husband on a three month Chemo Holiday!IMG_1095(1)

He he is with his two daughters in Destin, Florida in December 2018 just 9 months after diagnosis of Stage 4 Pancreatic Cancer non- resectable. Looking really good and enjoying life.

When that 3- month holiday was over, Dr. Wang told him to take another 3 months off. This was exciting and the tumor seemed to be minutely smaller. Hooray!

In February 2019, the scan now showed a spot on the spleen. Oops…something new and the CA 19-9 was at 1248 and that was a terrible hop up. What was the next step in this whole process?

Where did I go? Part 1

Yes, it’s been a while since I have posted anything for the readers, and I’m going to fall on an excuse.

In April of 2018 my husband was diagnosed with Pancreatic Cancer.  He was scheduled for surgery and we went to St. Louis from our home at Lake of the Ozarks and he entered the operating room in anticipation that the tumor would be removed. The doctor explained how long the operation would take, and I understood that. There is a board in the surgery waiting area that tell which stage the surgery is in and I knew the surgery, including the exploratory part, would take a total of 4 hours.  I was given a buzzer like the ones in restaurants and would be notified when there were updates by checking the surgery board in the surgery waiting room.

I sat down to have my first cup of coffee and began thinking about my husband and what he would have to do to recover from this surgery. Probably no golf for a week or two and he would probably have a little pain from the surgery just because the docs poked around. He’s a tough guy and even though his golf is the be all and end all of a day, he’d survive. He would be glad to have the cancer under control.

My buzzer sounded. The board displayed the completion of the first part…the exploratory part of the operation. This was indicative the surgery would proceed to the tumor removal because the surgeons had located it. Three hours to go and hopeful and praying for the surgeons.

My sister had arrived by now after her half hour drive from Granite City to Missouri Baptist Hospital in Creve Coeur.  I began explaining all that I knew thus far and we sipped fresh coffee provided by the volunteers. We were in for a long day and we planned to have lunch on the main level where a great little bistro-like area provides snacks, sandwiches and soft drinks.

Out of nowhere my buzzer sounded and I went to look at the board.  “SURGERY COMPLETED” was listed next to my husband’s patient number and I didn’t know whether to feel hopeful or scared. What happened with the tumor and why finish 2 hours early.  The doctor was on his way down to speak with me.

I Know My IBS

Irritable Bowel Syndrome is not a pretty picture!

 

Everyone is different and those delicious veggies may not be on your side.  Sometimes too much fiber is the worse things you can consume for your irritable bowel syndrome and yet so often the answer  people receive about their tummy problems is to increase their intake of fiber.

Fiber is not the right solution for all of us.  I am not a doctor, but I know my body and my IBS!

person carrying basket of vegetables   For me, I have to eat balanced meals and small ones at that. I have to eat vegetables…preferably cooked and avoid the cauliflower and broccoli family along with brussel sprouts because they cause a lot of gas.

Sweets are out unless I partake in very small quantities.  The high fructose corn syrup is a real problem and I have read about what sugar does in the stomach.  If I want to bloat, all I need to do is lean on the sweets.

What about fruits??

Trial and error…Sometimes if the peel of the fruit is removed, it eliminates the problem.  Peel peaches and apples.  Experiment with fresh fruit and remember good quality canned fruit is always in season.  The trial and error period is a beneficial way to set your diet limitations.

Sure, there is more to it, but let’s start with this.  Conquer your food habits and then you can work on stress and some other healthy lifestyles.  Remember your IBS will be with you forever.  Take it easy!

 

In Other words…

Learning to live with the irritable bowel is a daily challenge. Your doctor might give you Bentyl or another RX that can calm your digestive system and help ease the cramping.  It is a gut antispasmodic drug. The real challenge is learning to give up foods that cause your distress. Learning to keep a food diary is a pain but so is the effects of improper food consumption.  So there you have it.  Paint a better picture for yourself and eliminate hours in the bathroom or curled up on the sofa.

 

beautiful blur fashion female
Paint a better picture for yourself….

Can I Fire My Doctor! Doctors are supposed to help us heal. WHO KNOWS YOU BETTER? Ask yourself why you need to see the doctor. Are you having a specific problem with a specific area of your body or is this just an annual wellness visit? Many of us check in occasionally with minor aches and pains and our doctors usually know us well enough to take an interest in our problems and give us some sound advice on how to handle the problems. Some doctors want to order many expensive lab tests and cover all the bases. Some doctors will reassure patients of the reality of using such tests in each case. Maybe fear of missing something crosses the mind of the insecure doc or he thinks you want those tests. One way or another, you may be the one driving the fear into him. You may be older and consumed by constant pain which is somewhat normal as patients progress towards old age. Joints and bones do have a tendency to show wear especially if those joints have had a rough go in youth, but often repair or replacement is called for and often those surgeries are excellent options. Doctors are supposed to help us heal… and to lend an ear. Compassion is a must for doctors and it goes a long way in our healing process. Medical knowledge is only part of their job. Younger patients will not allow themselves time to get sick and older patients love the extra attention, but what about the doctor who ignores your symptoms too often and offers no relief or suggestions for coping with real pain. What is the doctor himself is so overwhelmed with patient overload that he actually falls asleep while talking with you. (This is a real case scenario. Bored or just tired. Dozing off is really unacceptable.) Get acquainted visits can be crucial in learning more about your new doctor. He wants to know everything about you, but does he realize you want to know about him too? From real life, here is a story about a get acquainted visit. This 68-year-old woman was scheduled to see her new doctor to get acquainted but one day before the visit, she fell off the kitchen counter top and onto the ceramic tile floor flat on her back and cracked her head and rib cage. It took her breath away. No blood and she was finally able to stand up. She was sore for that day around her ribs and upper hip but knew she would see the new doctor in one day. As the doctor greeted her, she told him the tale of falling, which he ignored. He continued with gathering information and her history as she struggled to sit up straight. Her ribs hurt and she was in pain. After 30 minutes he finally addressed her problem and belittled her explanation of where she was hurt. To answer the question: Can I fire my doctor? Yes, by all means you can…good luck!

Dancing with Your Disease

No matter what is the matter, there are answers.  Some are not what you want to hear, but nonetheless, they are out there! And research is being done around the clock to bring more answers!

There is a quote in the program of Alcoholics Anonymous that says in part “…are you willing to go to any length…” and this means in search of an answer for a solution to the disease of alcoholism.  It doesn’t say for a cure, it only means for a solution for today.

Some diseases are incurable, inoperable and totally unmanageable without the help of some medications.  Let me be clear…some diseases bring about major and unbearable pain, but when the patient is willing to learn as much as possible about the disease she or he will hold the winning hand.  Knowledge is power and that is the reason so much information is given to the cancer patient about the specific cancer being treated.  Hopefully the patient will go to any length to learn what to do to become stronger in fighting the cancer and following good health practices.

Migraine sufferers shouldn’t give up.  There are so many different treatments to follow and much information to consider.  Learning and researching is far more engaging than just letting the world go by as you suffer in your incapacitated state. Overwhelmed by pain and suffering accomplishes nothing more than defeat and being proactive is a much more healthy way of dealing with pain.

Even when a cold hits you square in the sinuses, it is better to do all the symptomatic treatments to help ease the pain.  There is no cure…avoid situations when you can and this means setting boundaries around those who are coughing, sneezing and blowing!  Wash your own hands and use sanitizer and clean the mouth piece of that office phone and other equipment your co workers touch.  If you are sick…STAY HOME.  Temperatures indicate illness.

Diseases can range from life threatening to life disrupting.  Cancer threatens lives, IBS disrupts lives. IBS is different for every sufferer.  Learn to live with it! Sad but true, it is not going anywhere and you can’t trick it.  Go to any length to learn your dietary and lifestyle limits.  You can’t cheat because IBS keeps track!  It is very cunning.  Bless those days of harmony when all is well.

Some diseases are discovered too late.  COPD is one everyone wished they had known about when they were young.  When it’s too late for the sufferer, he or she may want to become a spokesperson for that disease. Grandchildren are lucky to have written materials and support from family members who will guide them in avoiding the pitfalls of COPD.

Alzheimer’s has many clinical trials and hopes to find a cure soon. If you have lost a love one from this disease, you have been robbed and so was the patient.  What can be done now?

Some diseases are just your legacy, passed down through the generations and until there are cures, research will continue.  Be active, please, in any research program you can.  Contribute your time, your family profile, and volunteer to help in any way you are able. Dancing with your disease may help someone live a disease free life…it may be you grandchild!