Waiting

   

     So here I am still waiting.  It was 6 weeks yesterday since I had my surgery.  They said it could take up to six weeks to get the results.  It is 6 weeks and 1 day....can you tell I am not big on waiting.  They are having a tumor board review this is mostly the hold up I think.  What is a tumor board review.  Well it is a group of specialists 8-12 that meet and study my tumor and my past history.  They come up with a diagnosis and an action plan for my future.  I am blessed to be able to have this group of specialist look after me.  I just wish they would give me an answer.  I am suppose to start school on September 3 and hopefully get some work that will fit around my schedule.  So I feel like my life is on a bit of a holding pattern.  I went ahead and let everyone at school know my situation and we have an action plan so I feel better about that.  Waiting for the phone to ring.

Surgery...19 days wait!

     I finally know what my health problem is and now I need to get this thing out of me. I found out on a Thursday.  They sent off a recommendation to go to a specialist so I waited.  Monday, I still didn't get a call so I called the office of the specialist they sent me to and he is on summer hours and only open Wednesdays!  What the heck.  I was worried he would only see the note when he came in Wednesday and then the soonest he could see me was the next Wednesday.  With fast growing cells like cancer you just can't wait!  So I called back to my doctor and asked if he could call him.  Then I know this doctor works at the cancer center at the hospital so I called him there and talked to the nicest nurse who explained everything and she said she would get a hold of him and get him to call me back.  Nothing Tuesday.  In the mean time this is during the flooding so everything in Medicine Hat is shut down and lots of emergencies are happening.  So you just can't seem to get a hold of anyone!  Wednesday I got a call back that he won't see me and he now passes on his cases to a new doctor in town. I called Sean as I was at work and told him he had to call her, beg her to see me and explain what is going on.  Waiting on these doctors was going to kill me!

     Sean got a hold of her finally and told her everything and said someone has to see me or at least send me to Tom Baker in Calgary.  The doctor was the one that actually answered the phone and talked with Sean.  She let him know she is on holidays starting tomorrow but she will come in to see me because of my age and the importance of my case.  This is now Thursday and I have known I have a tumor for one week.  You can imagine how I am feeling and sleeping.  We were both so worried.

     So I went in and saw her by myself as London was getting her wisdom teeth out in Lethbridge and Sean was with her.  Looking back, I should have found someone to come with me to help me make decisions.  I didn't realize how important this appointment was. The doctor was so nice and answered a ton of questions.  She did another ultrasound in her office and now the tumor was 6 cm around (the size of a baseball).  It was really bumpy and ugly looking.  She also had a resident so she talked him through everything and I got a ton of information none of which good.  She agreed that I had to get this out of me as soon as possible  Unfortunately she was leaving for Belgium the next day and couldn't do it for just over 2 weeks.  I was shocked by this.  She said I have bumped my other surgeries and I have put you on the priority list and can get you in July 16th.  It was June 28 and that was 19 days away!!!  19 days is a life time to wait when you have a fast growing tumor let me tell you!

     She said that she could send me to Tom Baker in Calgary but she didn't know their wait times.  The problem was she wouldn't keep her surgery date here if I wanted to go to Calgary.  She couldn't because it wouldn't be fair to her other patients.  So I either took the guaranteed date or rolled the dice and took a risk that Tom Baker could get me in sooner.  I didn't even have anyone to consult with and ask.  I asked her what she would do if she were me and she said I can't help you make that decision. Didn't matter how many tears or times I asked, she wouldn't budge.  I had to do it on my own.  Anyone that knows me should know I hate making big decisions and this was a biggie!  So I decided to go with the sure thing plus I would be in the hospital 5 days and it would be easier for my family here.  Then we had to decide on how aggressive I wanted to go with the surgery.  1: just take out the ovary then stitch you up. If it is cancer which we will find out later they would have to open me again and take out my lymph nodes and omentum.  2:  Take out everything just to be safe.  I didn't fancy another surgery so I said just take it all out. We came up with a plan and now I had to wait.

    The Friday before my surgery on Tuesday we were out for my last quad ride with my cousins.  We had quad problems so Sean had to go back and get the truck and haul them home.  After he loaded them, he jumped out of the truck and hit a rut and twisted his ankle.  He was in lots of pain.  By the time we got home it was hugely swollen and black and blue.  We thought maybe it was a bad twist but he started to shake and go into shock so London took him to the ER.  Yup, just our luck! It was broken!  They wanted to put it in a cast but he said there was no way as his wife was having surgery in a couple of days and he has a farm full of animals to take care of so they put it in an air boot.  He still was to stay off it totally for 4 weeks.  It is also his driving foot and all the vehicles we own are standards except for a truck.  So now London is our prime caregiver, chauffeur, cook and cleaning lady!  Boy is she going to have a fun summer.

*good ole Oprah and Dr Oz. This is an omentum.  One is healthy and one is from an overweight person.  Mine was the larger one!

Definition: The omentum is a large fatty structure which literally hangs off the middle of your colon and drapes over the intestines inside the abdomen. It is not clear why it evolved as part of the human body, but it does reach every organ in the abdomen, draping over and attaching itself to areas of inflammation. So, as part of its function, it may act as a bandage in case of bad infection or intestinal rupture (such as appendicitis), limiting spread of infection. It is important in ovarian cancer because it has a lot of tiny blood vessels. So cancer cells that have broken away from the ovary like to implant and grow there, known as omental metastasis.

*picture of an ovarian tumor  Mine was 8 cm around bit bigger than a soft ball

     We went to my surgery with a ton of questions as we hadn't been able to talk to the doctor for two weeks and we were worried.  She was great and came into the surgery waiting area all tanned and rested from her holiday and put our mind at ease.  A final kiss goodbye and I was off.  I am always so nervous when I have surgery. I always worry I am going to die (watching too much Grey's Anatomy and ER!)  So I always cry and say my "I love you's".  The surgery was slated to take 1.5 hours.  They opened me up vertically from above my belly button all the way down.  They need a large area as they don't want to spill any of the cancer cells from the tumor.  They took out the ovary first, tested it and found that it was cancerous and went and did the rest of the plan.  They took out 8 lymph nodes around the affected area and throughout other places in my body and they removed my omentum.  It is a huge organ that covers the front of all your innards and is a famous place for ovarian cancer to hide.  The surgery lasted over 3 hours.  As soon as I woke up the doctor was there and told me it was cancer and it had spread to two of my lymph nodes for sure.  One lymph node was double in size and full of debris and the other was enlarged and very mushy.  We don't know how much more it has spread as that all has to be sent away to Tom Baker and takes as long as 6 weeks to get back!  Darn, my worst nightmare! Not only is my cancer back; it's new, mean and ugly and it has spread!  This means chemotherapy.  Let the fear begin.

The Tale continues.

     I need to express again. The picture on the last blog isn't even all the drugs I was given.  I fill out about 2 forms a year for our medications and that includes eye wear.  I have filled out 3 in just the past few weeks, all of which had more than 10 prescriptions on each!  Sigh. So many times our doctors prescribe drugs hoping that is the answer.  I am not a pill taker so this is hard for me.

     I am going to finish the story on how I found out my cancer was back.  This is how I document most of my history so it is probably boring stuff for the rest of you! I had my ultrasound at the hospital on Friday.  I waited until Monday to call the doctor.  The receptionist and I know each other really well after 5 months of regular visits!  She informs me that, yes, they know I was in the ER.  That the doctor will call if there is anything to report on so don't worry about it.  So I wait....no phone call Monday, no call Tuesday.  Wednesday, I was explaining my frustrations to my aunt on the phone late in the afternoon and realized that I still hadn't heard from the doctor so I called his office again.  Now his secretary is getting a bit frustrated with me I think and says, "Kimara, we are ALL aware of your medical "Problem" and if there was anything to report the doctor would have called.  Here comes the famous line, "remember, no news is good news"  in a sing song voice.  I then lost it and said I need to get into a specialist. Can I do that with out seeing the doctor? She said no so I said I needed an appointment ASAP to get a referral as no news isn't good news to me because I know there is something really wrong.  She fit me in first thing Thursday Morning.

     Thursday, I had my appointment at 8 and she assured me I would be to work on time.  They put me right in a room.  I heard the doctor outside the door talking to someone saying this lady you are going to see has been coming for months now and I can't find anything wrong with her. Why don't you give it a try.  Then added, "good luck with that".  So in walks a young pimply faced doctor I have never seen before.  I need to interject here that up to this point I have been frustrated....now I am ticked off!  So when I saw him I wasn't happy about it and let him know.  I said I just want a referral to a specialist. I think I have figured out what it is and no one is listening to me.  He wanted to go through all my history and start from the beginning to see if he could figure it out.  He was an intern doctor.  I said I am not really interested in going over it all again but he was such a nice guy I ended up caving and starting from the beginning of all my medical history.  I am so glad that I did.  An intern is more keen to listen to you.  He went through all my old tests and found from March blood tests that I was extremely anemic and my white blood count was high.  All of these he said wasn't good and couldn't believe I wasn't informed about.  He then went through my latest tests only to find out that they hadn't sent the ultrasound!  The one the secretary assured me over and over that the doctor had looked at and that no news is good news!  Well, he read it in silence and then looked at me and said I am going to read the results.  They found a mass on my left ovary ( I only have one ovary left. 8 years ago I had endometrial cancer and they took out my uterus and my right ovary.  It was fixed just with surgery and I have been clear until this point.)  It was a solid mass about 4 cm around.  The causes it listed were cyst or possible ovarian cancer!  At this point I am crying and I said, see, I told you guys I was sick!  Now we have wasted all this time and I know it is cancer!  Poor young guy didn't quite know what to do with a crying lady.  He didn't deny any of it as he knew my history and I am sure he realized it was cancer as well.  He patted my leg and let me rant then left the room to go and tell the doctor.  They left me in the room alone for 40 minutes!  Not a sound coming from the hallway.

     At this same time, Sean was on his way out of town to go on Mancation (his quadding trip).  I tried over and over to get a hold of him and couldn't get him to answer his cell.  I was just sick....a tumor...that isn't good news and wasn't what I was expecting but it was also a relief in one way to know they found something and finally I was going to get answers.  The doctor came back and I was upset and let him know.  He let me know he only does his best and spends hours going over his patients files but somehow missed this.  I feel bad for him. He is way over worked.  Every Canadian doctor seems to be flooded.  He is young and just didn't have experience with someone with my history.  I blame myself as well. I should have been more faithful in watching for signs and I should have been going to a specialist.  Either way, the fact was I had a tumor and I needed to get it out as soon as possible.

The awful "C" word!

     One of my favorite words in the scriptures is "Remember". Spencer W. Kimball taught that remember may be the most important word in the dictionary "because all of us have made covenants, our greatest need is to remember."  It is funny how remember is my favorite word, yet often in my life, I forget who I am and Whose I am. I am a daughter of God sent to earth to follow him, get a body, learn from life's lessons and in the end try to become more like my Heavenly Father through life's experiences.

      I have been having many health problems for the past 5 months. It started when we were in Miami. I got up for the day, had a shower and was getting dressed when suddenly I was doubled over in pain. I was in agony for about 2 hours. I took medication and stayed in bed until late that afternoon. We were going to go to the Everglades that day so I needed to force myself up so we didn't miss it. The next day I was still in pain and we were running late for many of our flights, but I could not run through the airport because the pain was so bad.  I thought it must be a severe bladder infection gotten worse by swimming in the ocean so much.  I took some antibiotic I had been prescribed and by day 3 it was mostly gone so I forgot about it.

     A while later it happened again.  No signs of anything just sudden pain that made me unable to walk or do anything for a few hours.  I went in to the doctor and he felt my abdomen and it was a sharp pain on my right side so he rushed my blood work thinking it could be appendix.  It wasn't that and by the next day the pain had lessened so I just left it.  He prescribed some drugs that might help it so off I went.  Now I think we are to May. I was on my way to work; I was fine until I got to work, it started at the doorway of the school.  I could barely make it down to the classroom.  I went to the library to sit hoping it would pass so I could go to work.  By now I have had lots of time off for this unexplained sickness and you start feeling really bad for missing work so I hoped it would pass.  It didn't.  Luckily I have a daughter that drives and answers her cell phone ( in our family that doesn't often happen, the answering of the cell phone!)  She had to come and get me as there was no way I could drive.  I thought if I went in to the doctor during an attack he could figure it out.  So we called, showed up and made our way to the front of the line.  As I was writhing in pain in his office, he checked me out.  On previous visits when describing my pain we had thought bladder or maybe gall bladder attacks as they seemed random.  Pills had been prescribed with no success. The pain would come and go so suddenly.  So this time he determined it must be my bowel which I insisted was fine.  He gave me three prescriptions this time to try, saying, "I have no idea if these will work. Just try them. If they do , bravo!"  I went home discouraged, sure that there was something really wrong that he was missing, and frustrated because he just saw an over weight woman who was imagining things and over reacting.

* This is a picture of some of the medications prescribed in the last couple of months. Most were to try and figure out what was wrong! Doctors do love their pills!  

     When June came, it was nearing the last of school so it was busy; filled with fun activities.  I had a bladder surgery at the end of May I was hoping that would fix some of my problems.  Maybe it was just bladder spasms. It was my first day back at school after my surgery so I wasn't really strong yet but I was so excited to be back (June 17th).  It was in the evening and my kindergarten class was having their little graduation.  It was wonderful to be back.  Just before it was time to go on the stage to pass out awards I started to have pain.  I couldn't believe it.  I thought maybe it was the high heeled wedges I was daring enough to wear or just too much so soon after surgery.  My darling teacher and friend Sonia traded shoes with me and encouraged me to sit it out but I just didn't want to miss out so I went up on stage anyway.  The pain was so intense I didn't know how I was going to finish.  I was sweating and gritting my teeth but I finished.  I got onto a chair and my principal and friend David lent me a phone to call my husband.  The kids came to me for hugs and I waited for Sean and London to show up to drive me home.  They put me on an office chair and rolled me out to the car.  Thank goodness by then most people missed out on my roll of shame!  They got me in the car and took me home.  This time the pain was way worse than I have ever experienced.  I felt I was going to vomit, I kept blacking out and spontaneous tears ran out of my eyes.  I was in AGONY.  Sean and my dad gave me a blessing.  I immediately felt some relief.  I took some good drugs I was sent home with and still was in pain so we decided it was time for emergency.

     While laying in bed during my attack London remembered the date of my last attack and looking back I was able to figure out this was happening monthly. I figured it had to be my ovary so my first thought was that it was cancer!!  We went into the ER and they hooked me up to good drugs and an IV and ordered many tests, one of which was an ultrasound.  It was the middle of the night now so I was sent home at 4 in the morning and told to come back on Friday for an ultrasound. I missed another day of work and went and got an ultrasound which was so painful because I was still so tender in my abdomen. Now I just needed to go to my doctor to get the results.  I already had a feeling that my cancer was back.  I will leave off here and write the rest of the medical story tomorrow.