Frustration with Lack of Answers

Ah...time for the physical and the first time at my new doctors office. I hoped for answers as things have not gotten better. I felt comfortable from the start, stayed positive and had fasted that day in case they decided to do blood work.

I met Theresa the PA who was responsible for handling routine physicals. She was very pleasant, listened to my concerns and was helpful. I told her about eating something then tasting it again 3-4 hours later when bile would come up my esophagus and either make me feel like or result in vomiting.  I explained the unusual pain in my lower left quadrant and how it was nearly constant now, often feeling much like menstrual cramps of days gone by. Then we were on to the usual questions, tests, and I was eventually sent for blood work at North Ottawa Hospital.

She listened intently, suggested no alcohol at all (which I am only a social drinker so it isn't much of a sacrific), no NSAIDS but I could have Tylenol for pain (thank goodness since sometimes my ache is quite miserable down there) and recommended an Endoscopy to look at my digestive tract, possibly with a Colonoscopy done at the same time. I knew I needed one of those since I had only had the in office occult tests prior. She recommended Prilosec for the next two months to aid with healing my esophagus and said they would be contacting me regarding my test results. Duh...I did not even think to set up another appointment to discuss results, check on my progress with the Prilosec, etc.  Still so conditioned after all these years to having the professional tell me what I need.  You would think with all the stuff I went through over my breast cancer, I would have learned something!

The following week I received a call with my test results.  No Tylenol was allowed now so no pain medications allowed at all.  I had elevated liver enzymes, white blood cells in the urine, elevated triglycerides and bad cholestrol (which I knew I could change with my diet) and the endoscopy would be scheduled in September. Nothing that couldn't be explained away or improved with effort. It was a very long August!

The Prilosec worked fine at first and I could eat most everything whether I should or not. I wasn't learning a thing!  About the 3rd week with Prilosec, the fatigue and lower tract discomfort became miserable. I would become bloated, sick feeling and then the explosive diahhrea started appearing with regularity. After each of those episodes, I was whipped! When my first 30 tablets were done, I quit. I could not physically or emotionally deal with that anymore. I did start keeping a food diary of what seemed to be ok and what caused problems. My problem list soon grew larger than what was ok.

The papers came to fill out for the Endoscopy scheduled on September 18, only it wasn't for the procedure itself, but an office visit to determine if I needed it or not.  I was devastated. My friends were upset.  Walt finally said, "You have already put up with this for two months and it will likely be another 4-6 weeks before you get a colonoscopy or this scheduled." I felt defeated.

By the first of September, I had researched foods for Diverticulitis and Gerd, decided what to try to eat to help each possible diagnosis improve and began to do my best. Things were helping but some of the reflux issues still remained. I was trying to avoid Tums or some type of antacid, but it was getting more difficult.


I met with my oncologist on September 4th and though it wasn't what she expected, I told her about my summer, my lack of answers, the still far off Colonoscopy and my frustration and pleaded in hopes she could help me.  She requested a CT scan ASAP & a follow up appointment within two weeks to discuss test results.  I felt some hope...the CT scan took place four days later on Friday afternoon. Though the iodine rush during the second part made me nauseous and nearly vomit, at least it was done.


That weekend, I took a drastic measure and basically stopped most solid food. I prepared Atkins protein drinks in the morning and afternoon with a banana for any indigestion; chicken broth, jello, water, applesauce, pears and apples.  I ate albacore tuna with mayo, sometimes with spinach greens and romaine lettuce. I drank decaffinated green tea, white tea, and tried not to take antacids or pepto bismol.  Occasionally I would fix a grilled hamburger patty with a small slice of gouda cheese. Things improved...

I was still going to movies whenever possible but if a social event included food or drinks, I passed. I never knew if my bowel habits would result in diarrhea, stools too large and solid to flush, or unpleasant odors that would remain after my visit. If they served food or drinks I knew would cause me problems later, I would pass. I started bringing my own tuna or jello to lunch with Walt or selected the grilled patty with mushrooms when eating lunch with Sandy and Mike. When I met for our gathering lunch with my women's singing group, Choral Belles, there were wonderful salads and desserts...I ate sugar free jello and drank water. No trust in my system at all by that time.

On September 18, my friend Carol accompanied me to my follow up appointment. Dr. A was running late that morning.  She stated that the CT results were good. I had a small group of blood vessels gathering on my liver (a liver hermangioma, nothing to worry about really) and a shadow on my left adrenal gland. She wants another CT scan taken to be certain this is all minor in six months. Again...no answers.

I asked if I could be referred to Dr. Kim in GR for a colonoscopy, especially since I had not had one anyway to which she agreed.  She wants to see me in December and reminded me we needed to revisit my decision regarding my choice to discontinue the Arimidex, the pill chemo for my lobular carcinoma.

With some answers regarding my present situation, that might not be such an unpleasant discussion. Time will tell...

Nothing like spewing frustration 6/29/2010 & 7/1/2010

I was still reeling from the diagnosis change and the new treatment program presented today. Basically I am confused, uncertain, and totally feeling overwhelmed. Granted, my surgeon had given me other information based on my original pathology report from the biopsy. So, I based all my research on that. I didn't realize just how wound up I was until I went into rehearsal this evening.

I knew they would all want to know and before I could even get through the door, I was spewing out my frustration and confusion to Ruth. Then Carol walked in and the frustration continued as Gerry joined us. Each of them shared knowledge from experiences and we all tried to make sense of what I had heard. Bless them for letting me vent because I truly had no idea just how badly I needed to. I have been trying so hard not to burn out any friends or friendships over this that I just bottle it deeper and deeper inside. NOT a good thing!

This whole experience has been a roller coaster ride of emotions. First you are up because you feel like you are in control of your life again only to come down when you are given another alternative, hear you have to take another test, need to find another facility, whatever! It isn't enough to deal with the fact that something you never invited has been inside your body causing havoc without permission. Now the experts in who's hands you are putting your life aren't quite certain what to do with you. To make things as simple as possible, the easiest route is opted for according to the NCCN guidelines. Does that make it right for me?

We finally sang through some songs we'll be performing for a church service at Ferry Memorial on Sunday, July 11 and it certainly took some of the pressure off. Just getting to sing awhile with good friends felt wonderful. But I think it was made even better because my friends cared enough to know I needed them to listen, I needed them to share, and I truly wanted to hear what they had to say too. It was that reassurance that I was not alone in my thoughts that helped. I spend too much time there already!

I thought I was over spewing until I went to Beads today. I enjoyed being with everyone and making jewelry to give to breast cancer patients at the cancer center where I will soon be getting my treatments, if I end up with them. One of the women came in just before we were getting ready to leave. She had been through cancer treatments a few years ago and had offered her help and support. Before I knew it, I was telling her about my frustrations. Pretty soon, the other seven women were listening too. Under normal circumstances, I would have stopped since it was a private conversation, but I did not.

In my mind I think I believed they needed to hear this. Breast cancer is not one single disease. It has several different variations and with each comes complicated decisions on what treatment options you may get to choose from, what the side effects may be, what you may have to deal with and for how long, what the financial responsibilities are, and what the toll is on your life right now! At the center, they have a very efficient and helpful process you follow when you come for your first visit. But in my state of mind, with my diagnosis different, unprepared for my new treatment option, unfamiliar with the person suggesting my 5 year care plan, I walked out in a blur.

When I called to apologize to my friend Deb for talking so openly in front of the group about it she said, "You know Donalee, it didn't bother me at all. I think that was a good thing to talk about it openly as you did. We don't talk about the pressures of dealing with cancer. It's not cut and dried. You have demands put on you that most people don't even realize when you just struggle getting through a day sometimes. There isn't one single part of this whole thing that is easy. It could happen to them and women need to know who truly is responsible for their care...and it isn't the doctors."

And I take that thought to bed with me every single night!