It's Been Difficult

April 17, 2017

I've been very depressed. When you're only 68 and you hope to live until at least your mid-eighties and you're not even 70 yet and you are told it's no longer safe to travel, it takes a while to sink in. When it does, it's devastating. I love to travel, on cruises, driving, anything. 
Slowly it sinks in that this 'could" mean not being able to go to conventions across Canada each year. 
The road trip I wanted to take to Ontario next summer is in jeopardy and I have so many places I want to visit still in the USA and Canada - all at risk!
More important than that is the reality that I am probably not here for a long life. I always thought that being nine years younger than my husband, I would for sure outlive him. Now I'm not so sure about that. Not at all.
I want to be here, to live to watch my grandchildren grow up. That has always been so important to me, for as long as I can remember. What type of people will they be? What will they do in the future and who will they marry? So many questions but those questions, those children, keep me alive. Keep me fighting to live.
I wanted to one day take them on a cruise, take them to Disneyworld, explore the world with them.
I'm scared. Truly scared.
I've already mentioned that I just wasn't sure if I would survive the next surgery but I know now that even the Doctors are worried about doing more surgery on me.
I've been hit again with another "episode" - not as bad this time but all the same, I've had pain and discomfort, enough to take my meds, painkillers and go on an all liquid diet, once again hoping that surgery can be avoided.
I think I am feeling so depressed because I am so scared. 
This morning, as I am lying in bed, not feeling well, one of the surgeons called to say they want to see me. Unfortunately, his schedule is busy and I can't get in until next Monday so for the next week I'll have the "unknown" of his latest news/report hanging over my head. 
Don't get me wrong. I am so thankful that the Doctors have been able to keep me alive this long. I've been lucky enough to meet three more grandchildren since that first life-saving surgery in 2012. Five years with my grandchildren I almost didn't live to see.
Not only that but I do remind myself every day that there are so many who weren't lucky enough to even live as long as I have. Yes, I think of them all the time. I wouldn't be human though if I didn't also think of my friends who lead healthy lives. 
A weird combination of thankfulness and jealousy.

WHEN YOUR BODY LETS YOU DOWN

HOW DO YOU HANDLE IT?

I've been so blessed to travel pretty darn extensively over the years and been to so many countries but I still have places to go, places on my Bucket List. How do you do that when your Doctor looks at you and says, your travel days are over?
This has happened to me before, but due to constant complications, I underwent surgery and have been lucky enough to travel although somewhat closer to home. 

By most interpretations, I am still young. At least I certainly think I'm young. I know so many who are at least ten years older than I am and they still are healthy leading active lives and travelling around the world.

For me I have to make some choices. Do I want to live and be able to watch my grandchildren growing up? Of course I do! They are my most precious loves. I'm a curious person... I want to know what they will look like and what they as people will be like. What will peak their interest for working in their future, who will they marry? Will they be happy, healthy? Oh yes, I have many questions and want to be here to see the results of the family we created.

Can I go on cruises? Attend conventions across the country? Travel 'cross country to visit friends and family?

Questions I don't have answers to... yet. And am not sure I am going to like the answers I get from my surgeons one day perhaps all too soon. 

I've just spent almost 6 weeks waiting for biopsy results and results from cancer screening. Six weeks of expecting to enter hospital upon my return, for major surgery. Now, they have changed their minds. The surgery has been delayed or maybe even cancelled? The good news, GREAT NEWS, is that the tests were negative. There is no cancer.
But inside, my body is a nightmare of a mess of adhesions and other issues. I live in pain most days now. One Doctor send me home from the hospital telling me to "just take Tylenol." Unfortunately, it doesn't do anything for the pain.

I'm too young for all this. I'm also terrified by something else. All my life I've had the feeling I would die when I was seventy and that number is quickly approaching. It scares me. But to talk about it makes people think I'm crazy but am I?

I must remind myself that the biopsy results were negative and the Ovarian Cancer blood screening test, the CA-125 had a very low number which is excellent they tell me. In a few weeks I'll have a mammogram. 

But I continue to have pain, not as severe as it was that weekend in January or recently. Is it stress related? How does one measure that?

To many they say - aww, too bad you can't travel, because they've never had the luxury that I've had, to see so much of the world, but when your life changes, in any way, it takes time to adjust to the changes. So, I will relax, sit back, and adjust.

Hanging In There, I think!

It won't be long now until I get home and meet with the surgeon to find out the results of the biopsies and blood tests.

It's been interesting waiting. My husband says he thinks I am doing so well, staying so calm, staying busy and keeping my mind off what's ahead.

I've had to stop watching medical shows as they upset me when they tackle certain issues, or show surgeries on television. They scare me and my mind starts to think about what's about to happen to me.

What has been difficult is when people ask me if I have my health issues under control yet (obviously they have no idea of what is going on or the seriousness of what I am going through) and then there are the few who harp at me, yes harp as some won't let it go. They ask: "why don't you call your Doctor and get your results" or "what kind of Doctor doesn't tell you your results right away?" Seriously? First, it's none of their business and secondly, I was the one, who in conversation with my Doctors and husband, decided that I would not get results until my return home. There was one day when my husband offered to call my Doctor but I knew there was nothing I could do, or that the Doctors could do right now. Collectively we decided that it was best for me to return to Arizona where I could hopefully relax, get exercise and fresh air, and spend time staying busy with my friends. There is nothing I can do until the surgery is scheduled.

Of course I have my moments.
Of course I am scared. In fact at times I'm terrified.
There are days I wonder if I will survive the surgery. I have some serious doubts when my mind runs amuck.

I am so thankful that my youngest son brought his family here for a few days so I could spend some quality time with his two little ones. They keep my busy and my mind off what is looming over my head and I am so thankful for their being here.

My older son and his wife have not called to say "how are you" or ask if I was okay.

No, I'm not ok. I'm scared. I had another attack not long ago, just like the one I had in Los Angeles and had I been at home I would have gone to the Emergency Room but instead, I took my meds and went on clear fluids and rested until I felt better. I know the last time I rushed to ER I was basically told nothing could be done and I should just take Tylenol.

No, I'm not alright thanks, but I'm not complaining as I could be worse! What I am is excellent at putting on a good face and smiling and saying "I'm fine" because so far, I am better than some of my friends:
My fiend C. was just diagnosed with breast cancer. Another friend L. has just undergone major surgery to have her face, jaw and lips rebuilt because of her cancer, the man next door died a couple of days ago from cancer (which last summer his wife survived) and another friend M went to ER with all my symptoms and was told she had stage 4 Ovarian cancer, then was placed in ICU and then before they even had ANY test results told her that although she had cancer, they had no idea where it is. Talk about an emotional roller coaster!

No, it's not easy, yes it's frightening, but realistically there's nothing I can do until I see the doctors so I will live each day as it comes and enjoy it to the best of my ability and consider myself  LUCKY!

I'VE JUST GOT TO GET THROUGH THIS AND MAKE IT TO THE END OF THE MONTH

March 9th, 2017 and it's been a rough two days.

Just as it hit me in Los Angeles, it's hit me again. Pain... my enemy. Not in one particular place and as I am having some bowel movements and some diarrhea, I know it's not a blockage but it sure is uncomfortable. I've also had a headache and some queasiness but it's hard to tell what's caused by nerves, fear, or something medical.

I've tried resting, walking, taking gas pills and Advil (because I'm out of Tylenol right now - I've gone through an entire bottle in the past month) but nothing helps.

When I went home the end of January the 'wonderful' ER Doctor told me to go home and take Tylenol so I assume I shouldn't be worried this time either?
Our son and his family are coming next weekend and the plan is to leave their 1 1/2 and 4 yr old with us so they can enjoy a few days of rest in Scottsdale so I just have to get through and over this. Sometime I wonder, is it just a stomach bug? Without a medical degree I can't answer that so I will just try to relax and make it through this rough patch without things getting worse.

2017: FAR FROM OVER - BUT JUST BEGINNING

The surgeon who ordered the CT Scan referred me to a GYN for more tests and to arrange to remove the cyst.
My husband and I went to see him and I learned there were TWO CYSTS not one. They were the size of a tennis ball (8cm) and had to come out. There are three types of ovarian cysts, with one being liquid, the the middle one that he thinks I have and then one that's really bad.
The problem with mine is they are behind vital organs and probably attached to the pelvic wall and that means it will be extremely difficult and slow to remove them. The surgery could take 2-7 hours and there would be at least three surgeons involved.
He also ordered a blood test which will give a heads up as to whether there is any sign of cancer in my body. Unfortunately, although he sent me to the lab downtown thinking he would have the results in a day, the lab said it takes at least a week to get the results on this particular test.

When I got home I received a call from the hospital. They wanted me to go in Friday night at 7:30pm for an ultrasound. OK, I could do that. I would have to drink a litre of water one hour before heading to the hospital. What I didn't know was that after the abdominal ultrasound, they had to do a vaginal one where they put a camera up into my vaginal to get a closer look at the cysts. Now I'd never even heard of such a test but let me share with you that IT'S PAINFUL. They probe and push and push your abdomen around trying to move the cyst to get a better view.

Moments before the ultrasound I remember lying on the table thinking to myself "I don't need surgery - I feel fine." Let me tell you, I wish they had told me to take a Tylenol before that test and I certainly took one as soon as I got home!

So now I wait. I've an appointment April 3rd to see the Gynaecologist and see where we go from here. One month to relax and enjoy my life as much as one can with all of this handing over their head.

Do I have colon cancer, or colitis? Is the cyst malignant? Let's not go there!

COLONOSCOPY 2017

It was a nightmare.
I had a colonoscopy a couple of years ago because they thought they saw a dark spot and needed to know what if anything was wrong. They found nothing thankfully.
I was in ER when I was informed that I required this colonoscopy and was put in a bed and given this jug of goop. Peg-Life I believe its called. Disgusting goop is more like it. I had to drink this big gallon jug, a bit every ten minutes all night long.
I don't do liquid meds very well. I sure didn't this night either. At some time in the middle of the night up it came, all over me, and as my husband thrust a basin under my mouth it just kept coming and I filled two basins with liquid that kept coming up from my stomach. I panicked as there was blood in it. No way would I drink any more of that stuff, so in the end, I also had an enema to clear me out.

Now here I am again being told I need a colonoscopy just two years later.

Let me tell you a little secret a Doctor friend told me. He too hates the Peg-Lite goop so he takes a small bottle of Magnesium Caltrate I think it's called. It comes in flavours such as cherry and grape and I think pineapple or peach although the liquid is clear. He said to drink two bottles of that stuff and maybe take some Dulcolax too. I stuck with the two bottle of M. Caltrate and clear fluids and never told anyone that I didn't drink the goop.

The colonoscopy was done and they removed a polyp and took two biopsies and now I am waiting for the results.

2017 - HERE WE GO AGAIN - ANOTHER MEDICAL ADVENTURE

I've done so very well since my last surgery when they removed another section of my small intestine. Although I am on daily medication and a very strict diet, I've been pretty darn healthy.
My diet is similar to that of anyone with Crohn's Disease although I don't have Crohn's. It's a no-fibre, high protein diet with few vegetables or fruits, and no sugar, nuts, or fibre. So basically I am allowed to drink water only, and eat meat and potatoes.

Of course being a woman I cheat. I mean we women can't live without chocolate occasionally!

So here I was, about to depart on a cruise with my girlfriends. I flew from Phoenix to Los Angeles where we were to meet. On the way I had some discomfort and I now realize that it was a partial blockage in my intestine due to eating eggplant when at a friends home for dinner the evening before. The skin on the eggplant, which I didn't even think about, was too thick, coarse, whatever, for my poor intestines. I thought that by taking it easy the next day and having nothing to eat other than an omelette for breakfast and clear broth for dinner that I would get past this but no. Friday evening I wasn't feeling too well but by Saturday morning I had the runs and really felt pretty badly.

I had to make a decision and make it quickly so I booked a flight and flew home where I would be close to my own surgeon should one be required. It was such a hard decision to make and it was a pretty tearful day at times but I knew I was making the smart choice and needed to go home, or at the very least, to not get on that ship which would be spending its first two days at sea, far from a major hospital.

I arrived home late at night in the cold, alone, dragging my suitcase through the airport and was lucky enough to catch the last cab. Off to the hospital I went. I must have been a sight as I went from the bathroom to gather a urine sample, then off for blood-work, then an x-ray and to have my vitals checked, all the while, dragging my suitcase. There was no place to leave it so everywhere I went, it went too.

Finally around 2am the ER Doctor on call came and explained that there was nothing in the X-ray and I should go home and take Tylenol. Seriously? I can all this way, giving up a week's cruise, to be told to take Tylenol?

I took a cab home and it was late, I was cold and tired and frustrated and just a little stressed as I stood at my garage door trying to remember the code to get in. It was so good to finally crawl into bed. I couldn't find any Tylenol but being the middle of the night there was nothing I could do.

Monday morning I called my surgeon first thing and left a message. His secretary called and said to come later in the morning and he would fit me in between other patients. After a thorough review of my previous tests and reports and an examination of my abdomen he said I seemed to be fine although I may have had a partial blockage but it's seemed to have cleared. If I had further issues he was on call Wednesday evening in the ER and to come in and he would order a CT Scan.

Tuesday I felt great and borrowed my son's truck to run errands and then meet a friend for lunch. I then picked up my grandsons and took them to their swimming lessons. I was tired at the end of the day but ok.  Unfortunately I couldn't say that the next evening. We had fajitas for dinner and I ate some red and yellow peppers. That darned skin again? I don't know but by the time dinner was over I was in agony. I spoke with my husband on the phone and he said I needed to return to the hospital. The problem was that my daughter-in-law was out and my son couldn't leave the kids alone so we waited for her return then he dropped me off at the hospital.

I am supposed to have a CT scan when I go to ER and it's too bad the original ER Doctor hadn't done one. Now, again, I went through the blood  and urine tests etc. then this ER Doctor decided to put an IV in my arm and have me sit in the waiting room all night. She didn't want to call my surgeon and wake him up. What? I came tonight because he told me he was on call and now they wouldn't call him?

So I sat in a chair all night with an IV in my arm. At around 6am they called the surgeon who ordered the CT Scan. It was done between 8 and 9am and by 9:30 he was at the hospital checking the results. He came to talk to me and it wasn't at all what I expected. First, he mentioned the cyst on my ovary. I vaguely remember being told about this when I spoke with him a couple of years ago. He also  mentioned that the lower part of the colon was dark in colour and he didn't like the look of it. He had a telephone consultation with another surgeon - and after a long talk she said she wanted to see me but was swamped all day so would get in between patients later. So I was sent back to the waiting room to wait for her arrival, still dragging my IV pole around with me and now stuck in a very crowded waiting room.

Around noon this latest Doctor arrived and she told me that I required a colonoscopy but that it might be a couple of weeks before she could get me in. I was lucky thought and she had a cancellation for that Monday but the last one of the day so it would mean a long day of no food and clear liquids for me but at least I would get it done.