Note to Self: Chemo Experiences and Future Goals

Today's blog (ahem, journal I guess?) is a note to my future self.  It's to remind me about how I'm generally feeling these days with chemo, and more importantly, to send future me a message about some goals I do not want to forget.  With any luck, maybe someone out there will read it and get some benefits too :)
So here I am on day 6 of round 5.  The end is in sight!  If there are no more delays, August 4th will be my last infusion of IP Taxol. I've been blessed so far to have really mild side effects, with the exception of that horrible week in round 2. But I have been feeling generally "icky" since Friday. That's why I wanted to write something down just to remind myself that although chemo has definitely been manageable and a lot easier than I could have expected, it's not exactly easy breezy either.
The ickiness is just that heavy feeling in your stomach - like you really would prefer not to eat.  There are plenty of meds given to control side effects - dexamethasone, ondansetron, prochlorazine.... they are really helpful for sure, but they come with side effects of their own.  The Cisplatin apparently messes with the taste buds. And it's true. Everything tastes a bit metallic.  Except sugar and carbs - those taste good - the only things I'm not "supposed" to eat :(.   And while the dexamethasone does a great job at giving me some much needed energy, it also makes me crave food (in spite of the icky tummy).  And my taste buds demand that it be all the wrong foods.
Then of course there is the general fatigue - I would say that on that front, most of the time I am doing great!  I'm able to get out and be active and do a lot of ordinary day to day chores and whatnot. The hardest part of the cycle is week 1 - I'm not sure if it's the actual chemo, or the Neupogen (now very necessary so that I can continue without delays due to low blood counts), or the Claritin that I take to prevent the infamous Neupogen bone pain. Maybe it's a combination of all three.
Today for example, I brought mom to an eye appointment at the hospital (a minor and quick procedure), brought the car back to the mechanic to adjust the noisy brakes or whatever it was, and stopped in at the college before picking mom up again.  I had plenty of energy during the outing, but by the time I got home I was wiped.  Add in the lack of A/C in this muggy weather and I passed out cold in the chair for a few hours, alternating between hot and cold sweats.  Oh the fun!  I really couldn't get moving after waking up until I had both a shower (#2 for today) and a coffee.
All of this is why I have been going easy on the diet. I am giving myself the room I need to actually eat without starving (I just don't have the energy and motivation required to spend time planning and preparing healthier meals).  I really want to remember this going forward - I hope it will motivate me to stay on the diet when chemo is finally over.  I want to keep my body healthy enough to not have to go through this all over again, potentially with different drugs that may not be as "gentle" on my body as the current chemo prescription.
Those are some of those funny details of what chemo feels like for me these days.  Luckily I barely experience anything like the horrible palpitations in cycle 2 - my heart seems a little fluttery sometimes, but I don't need to rush back to a chair like I'm on the verge of a heart attack.  And I can't believe how well I do feel at times when I'm out and about.  It's a blessing to say the least.  But I needed to write down a bit about how I usually feel, because I know my fuzzy memory will erase some of these details and I will find myself wondering how I really felt way back when I had to go through chemo.
But the most important message I have for future me is this:  "You did fabulously with creating simple and healthy meals for yourself in those first months after the diagnosis- and you can do that again!!!  You feel good now because you are easily 40 pounds lighter than you were at this time last year.  Eating sugar puts you in a sugar coma and sucks your energy.  So, give yourself a treat maybe once every 2 weeks if you really need it, but get yourself back up on that Health Train and stay on Track!!! You can do it!!! - keep your body healthy and always remember your long term goals 🤗 - Go to Hajj, see Mehmed graduate from High School, from College or University, witness his marriage, meet your grandkids, retire and live in a Villa by the sea, visit more countries! And always keep up your prayers :)"

IP Chemo, More delays, and Ramadan

Now that I've completed a full round of IP chemo, I feel a little better about what's to come. The scary thing about IP chemo is that everything you read about it is that it's generally more toxic and can have more severe side effects. Luckily, that didn't happen with my first round, although I did have some side effects that made me a little paranoid.  One of the things is that it can cause more abdominal pain, which it did... but it wasn't long lasting or severe enough to warrant taking pain meds (yay for the little wins!).  It also caused some pretty uncomfortable bloating and constipation, which lasted right into the 
third week.  That's what got me paranoid - because those are exactly the symptoms I had that led to my OC diagnosis in the first place. So on my pre-chemo visit with the RPN, I asked and she confirmed that these are all really common side effects with IP.  That's a big relief because I wouldn't want to think that the cancer has grown back this quickly after surgery AND while I'm getting chemo.  She also told me that another woman who just finished her last round has numbness going all the way around her belly.  Knowing all of that will help me to deal with the mental game of my side effects going forward. One good thing about this round was that the severe palpitations I had for 7 days in round 2 of IV chemo was reduced to only 2 days of tolerable palpitations this time. So I'm glad that there are way less drugs going directly into my veins and affecting my heart. 
My 4th chemo was supposed to be on June 1st, but it was postponed 2 weeks due to low neutrophils.  At least this time it's not platelets, because there's nothing they can give to boost those. If you count the fact that my very first chemo session was postponed by 2 weeks because of that c.difficile infection, my chemo has now officially had a total of 6 weeks in delays *sigh* ... I would love to just be done with it, but I guess it's just one of those things that's out of my control.  I might as well grateful that I had 2 weeks eek of no symptoms and I can start to re-energize a bit. xD
My doctor ordered Neupogen shots going forward, so as long as my platelets cooperate, I'm hoping there will be no more delays.  If so, my last infusion will be on August 4th (God-willing).
The other thing is that Ramadan has started. For anyone who doesn't know, it's a lunar month that starts with the new moon and ends after 30 days or the sighting of the next new moon.  Because the lunar year is actually 10 days shorter than the solar year, Ramadan slides earlier by 10 days each year. So right now, being from the end of May to the end of June, fasting lasts about 17.5 hours (from dawn, NOT sunrise, until sunset). Fasting means abstaining from food during those hours, but also from drinking (and...ummm... sex too shhhh).  Since chemo is so toxic and requires heavy hydration, I am officially "excused" from the fast.  But I can still participate by doing good deeds, volunteer work or donating in charity, and by praying for an extended period every night.  I mean, obviously these things are encouraged all year, all the time, but the reward for doing them during Ramadan is multiplied. 
God said:
"The fasting person has left his food, Drink and desires for my sake, The fast is for me, So I will reward him (or her) for it and the reward of good deeds is multiplied ten times” 

 I guess it's very similar to the Christian period of Lent.  
"O you who believe! Fasting is prescribed to you as it was prescribed to those before you. so that you may learn self restraint. Quran 2:183”

I did manage to go to the mosque for the first 4 nights of extended prayer (it starts at 10:50 pm and lasts until around 12:15am), but on the 3 nights I got my Neupogen shot, I was completely knocked out. I don't think it was the Neupogen itself though... Maybe it was the "non-drowsy" no-name brand Claritin that I took to stave off the infamous Neupogen bone pain.  It worked! No bone pain! But I fell asleep on the couch all three nights and was sawing logs by midnight ;).  
I did manage to go again on the next Friday and Saturday night. And on that Saturday we were co-sponsoring the dinner, so I brought 6 trays of lasagne (with a little help from the ovens of  my friends) and 4 large trays of baklava.  Whew!  I'm guessing that's what knocked me out again the next day (Sunday) because boy did I ever sleeeeeeeep! :)
After that I went for another blood test hoping that chemo would be on after a one week delay, but nope! Still had low neutrophils .  So I decided to start fasting since the drugs were pretty clear out of my system by then.  I managed to get in 7 days of fasting, then the next blood test was STILL too low, so went back on the Neupogen and stopped fasting. That did the trick.  They went from 0.9 to 9 in 4 days.  
Chemo 4 part 1 officially went in this Friday (June 16th) and thankfully I'm not feeling too bad.  Let's just hope part 2 goes ok because last time it was the one that caused more discomfort.  At least now I know what to expect, and that the pain went away during my 2 weeks of delays.  Time to just carry on ;) 🤗

Genetic Testing and IP chemo

So back in March my oncologist recommended getting genetic testing because of my age at diagnosis (43) and family history (2 paternal aunts with Breast Cancer before 50, paternal grandmother with lung cancer, father with mesothelioma)... luckily my referral went to North York General and they are fast!  My appointment with the genetic counsellor was a few days after my referral.  My BRCA1 and 2 results came back normal within 4 weeks. So they tested a complete 18 gene panel and she called me Friday to say they were all normal. What a relief!  I figure that ovarian cancer is enough thank you very much... I was convinced that with my family history I'd be needing a double mastectomy within a few years.  So the negative result means that I just have to deal with the risk factors associated with chemotherapy alone and not the added stress of the genetic predisposition.  I am happy also because I figure that my brother and sister don't have any increased risks, and my son and niece and nephews also have the same risks as everyone else.  Thank God for the little wins :)

The other thing is that my cancer is an early stage 3 - no lymph involvement as far as I know, but it had spread within the abdomen.  Both ovaries were involved and a small piece in my omentum. So I've been reading and researching a lot and I kept wondering why she didn't order IP chemo for me.  IV chemo is done intravenously, and IP is intra-peritoneal- meaning that the chemo goes straight into the abdomen through an implanted port.  
I decided to muster up the courage to ask about it.  So she reviewed my file and confirmed that I am a good candidate for that. The port was placed on Friday and ummm....holy OUCH.  The port is about the size of a fat loonie.  It was placed under my skin close to (or maybe even attached to?) my lower right rib.  There's a 25cm catheter that runs inside my abdomen and the bottom was close to my lower left side. I believe this is a weird response, but I could swear the end of the catheter is just scratching up my insides.  The pain was worse on Friday night and all day Saturday, and started to subside a bit yesterday.  I think I had already forgotten how much pain I had from the hysterectomy... so I guess that's the bright side.  If I can forget about the pain from the hysterectomy that was only 3.5 months ago, then this wee little procedure should be in my rearview mirror in no time at all.  I've totally got this!
My CBC counts were all fine today and I am in for my first IP chemo session this Thursday.  Those take home info sheets imply that I may be in for some more serious side effects, but I know that the statistics for ovarian cancer are definitely improved with the IP chemo.  Mehmed is in grade 8 right now.  So every time I struggle a bit with those side effects, all I have to do is think about him to know that it will be worth while in the long run.  I'm happy I had the courage to question my treatment plan, and that she confirmed this is a good plan for me going forward. 

Unhealthy Household and My Growing Boy

So here I am, 7 days into cycle 2 (ummm... finally!) and it seems everyone in the house is sick.  Mehmed's got another cold. Orhan's knees are killing him.  Seriously, I practically feel the pain myself when I watch him walk up the stairs or try to get up and down off the floor.  I hope I can get well quickly after all this and maybe switch to a full time job so that he can consider retraining for an alternative career. A carpet installer's knees just don't last forever.  And of course there's mom with her multitude of health issues.  She's had this pain on her upper right abdomen for quite a while now, but the CT scan literally shows nothing wrong, so no idea what to do or how to help her.
So far with cycle 2, even though my dose was lowered, I'm feeling a lot more fatigue.  Like, just getting up to the kitchen and washing a few dishes gets my heart beating hard and me feeling like I just ran a few flights of stairs.  For some context, I wasn't exactly in the best shape even before all of this, so running a few flights of stairs would have knocked me out. So I've put a call in to the nurses...  hoping they agree to at least check my hemoglobin levels because I have a feeling they're tanking.

On a brighter note, and a completely non-C topic 😊, I revisited a blog I wrote about one of Mehmed's typical days in grade 2. Omg how that boy has changed and grown!!! Sometimes I forget how difficult and odd his behaviour could be in those early years.  The medication did help him to get through I guess grades 2 and 3.  I actually don't remember when I finally stopped giving it to him, but I think it might have been in the spring of 2012. Best decision I ever made.  His temper tantrums calmed down significantly after that - it turns out that one of the side effects of ADHD medication is an increase in feelings of rage. I had no idea because before he started the meds, his temper was bad. So I didn't see a difference until he got off them.  See, by that time he had had so much training on how to control his temper that when we took the meds out of the equation, he was actually able to do it.
He's so mature now and he actually has a level of self-awareness about some of his mildly autistic traits. It's helping him to actually make his own efforts to improve his behaviour.  Every single year he seems to succeed in overcoming some major milestone. The last 2 years have actually been milestones related to his academic progress.  I can't believe it sometimes. He was actually happy to return to school last September and he cares about his marks. He was even upset at his report cards, although Orhan and I were very happy with them.  I see improvements and that thrills me. He doesn't want to see any marks below 70... but I don't care about that. A) he's still only in grade 8...and B) his marks are miles better than they ever used to be... I mean if I'm seeing multiple marks above 80, from this boy who could barely write a paragraph a few years ago, and was crawling around on the floor in grade 2.... I mean OMG, what parent would not be thrilled with such progress!?
He still has a lot more anxiety than I think typical kids do. I feel like we need to spend a lot of time reassuring him about the things that stress him out.  Thankfully, religion has helped him a lot. He admits that he thinks he's got a lot more faith than most of his friends, and he often comments on how good he feels after we do something that's spiritually rewarding.
I am so proud of this boy and I hope I kick this cancer in the ass so hard that I can keep watching him grow up into the amazing man I know he will be 💕.  InshaAllah.

Chemotherapy

The treatment begins... in addition to the hysterectomy, I've been following this grain free, sugar free diet.  As I started to recover from the surgery and the C. Difficile infection, I was feeling really good about all the weight I've lost and how much more comfortable I feel in my own skin. But after three months, I was really starting to crave treats.  I visited with the naturopath who said that I might need to give myself a "power hour" once a week.  She also said it might be best if I at least waited for the chemo to start - at least the chemo would be killing any cancer cells.  Still, I wanted a good treat that wouldn't be affected by nausea, so I decided I wanted to do a Sushi buffet the day before starting chemo.  Yum! Great time to have a massive lunch with both my boys. 
My first chemo was March 17th (it was originally supposed to be March 3rd but was postponed due to the infection).  In the days leading up to it, I was so nervous.   Thankfully, the day I received the chemo I actually felt completely normal. I only started feeling a little strange on the second and third days. I became acutely aware of every little discomfort in my body.  By the fourth day, I took the anti nausea med as usual in the mornings  (I had been taking them every 4 hours the whole previous day), and then the nurse called me to check up on me. She was surprised I took the nausea meds because she said I shouldn't be experiencing any more nausea by the fourth day. So I tried to go without it and I was fine!
That  whole week I got really busy actually- there was a woman from our community who had suffered a heart attack and was on life support and I was going to the hospital every day to visit her.  It gave me the chance to see my friends very often, which actually cheered me up. And visiting this woman and her family was a good reminder to me about my own mortality.  I am hopeful for a full recovery, but I think it's important to remember that we are only on this earth for a short period.  We should be grateful for every day, and every blessing.  This woman's family was so kind and they were heartbroken to lose her.  I pray/hope/believe that she's resting in peace. 
I think being forced to go out that week and acting normal (many still don't know what I'm going through, and I kind of want to keep it that way) helped me to realize that I didn't feel as bad as I had expected to feel.    The only things that bothered me were that from days 3 to 8, I had the bone pain at night. Never during the day. But it was pretty bad.  I also had kidney pain if I didn't constantly sip water.  I was afraid to take Tylenol or ibuprofen for the pain because my liver was already dealing with the chemo, but by the 7th day I finally broke down and took one.  I slept so much better that night. The next night too. And then the following night, the bone pain had stopped. 
My hair didn't start falling out until day 13- then I kept shedding so much - even thought I still had quasi normal looking hair, there were a couple of ugly bald patches starting by day 16, so that's when I let hubby shave my head. He shaved it down bald, and now I wish we had left at least a cm of hair. Now I have stubble that feels weird against my pillow if I don't sleep with a cap on my head.  Velcro-head.  
For me, being bald is really not that bad. I wear a scarf around the house most of the time. Sometimes I throw it off when a hot flash strikes me, but the bald isn't bothering me too much. The only thing is that whenever he sees me bald, Mehmed points it out and wants me to put on a scarf. One day I pressed him about it and he admitted it makes him feel sad 😢.   Poor kid. I wish he didn't have to see me going through this.  I am trying so hard to make him feel confident in my recovery. Any time I crave carbs, he's my number 1 deterrent.  I have failed quite a bit in the weeks since chemo started.  I hope I can have the determination to keep it up as much as possible going forward. 
The only other thing of course is that I've been pretty tired and I find it hard to make myself clean up around the house sometimes.  Other than that, I would have to say that it was nowhere near as hard as I thought it would be. My second round has been postponed twice though because my platelet levels were too low to proceed.    My doctor is going to reduce my dose and change my schedule to every 4 weeks instead of every three.  That does worry me somewhat about how well the chemo is going to work at killing any escaped cancer cells.  I will get my blood tested again tomorrow (@4 weeks 3 days) to see if my platelets are high enough for another round yet. As of Wednesday they were still only at 77. So that's obviously a bit worrisome. I keep wondering if I should ask my doctor about getting IP chemotherapy instead of just IV. I read that the nausea and other side effects are worse but that it doesn't hit the bone marrow as severely.    I kind of hope that the lower dose will allow me to return to a 3-week schedule. If I only go every four weeks, I won't finish till August 8th. And that's if there are no further delays 😳... which is looking pretty unlikely based on my experiences so far. 
For now, I'll focus on the bright side: I'm going into my second round with an even lower dose.  That, plus the knowledge about how much easier it was than I thought it would be, makes me a lot more confident going into this second round about how I can handle the side effects.

Surgery; the Wait and the Aftermath

So I had written before about my health History and waking up from my laparoscopy on December 15th with the sudden and unexpected reality that I had cancer. The gynaecologist called 2 weeks later to confirm the diagnosis.  We had held back on telling people before that. Orhan was holding on to some hope that it would be benign, but I wasn't.  It's not that I was being negative. I just understood quite clearly that a surgeon doesn't deliver news like "it doesn't look good" if he hasn't seen something that he professionally knows and recognizes to be cancerous.  I was glad that he actually prepared me. I wished he had actually said something beforehand if my MRI gave him reason to be suspicious.
In the immediate aftermath there was some stress and pressure from relatives to get the hysterectomy asap.  It was even proposed that I should go to Turkey to have it done more quickly.  But I really wanted to stay at home, even though I was powerless to change anything with respect to timelines - you get your diagnosis and a referral to the cancer centre, but you are still a person in a lineup of many others waiting for action. I had to wait what seemed an agonizing 2 weeks for my first appointment with the oncologist.  She did order a CT scan in the interim, which thankfully showed no apparent growth on any of my other organs - with the exception of the other cyst on my right ovary.  It showed a lot of growth since the previous scan in October.  After meeting her I was relieved.  My surgery was scheduled for January 26th. I set about to prepare for taking time off work and getting myself mentally ready for the big changes in my life.
I stuck to the diet I started in December - with some help from a naturopath.
The surgery was over 2 months ago now, and it already feels like a distant memory.  I remember being really nervous about getting an epidural.  I've heard of people whose epidurals caused long term back pain. It felt strange going in, but I was so happy that I got it. It helped with the pain tremendously.
 I always get really sick with anaesthesia, and this time was no different. I remember going up to my room after waking up feeling ok in recovery.  The nurses were asking questions and my blood pressure dropped really suddenly. I asked for a cold cloth and one of the nurses just dismissed me, saying "we're just trying to do your transfer here" and then proceeded to ask me some question that I couldn't answer because I'm pretty sure there was hardly any blood reaching my brain. They only stepped up to help when the BP monitor alarm started sounding. I think it was actually less than 90/60.

I stayed for 4 days - the first day was the most difficult- although the epidural was helping with pain, it did cause the low blood pressure and my first trip to the bathroom the next morning was horrible. I actually made it to the toilet and then fainted into the nurses hands. Luckily she was able to keep me in the sitting position.  The rest of the day I had to use a commode because there was no way I could make the short trip to the washroom.  I would say that once I was actually able to make the walk there, I started to get better pretty quickly. I had a lot of visitors and it was uplifting to receive that much support.  I was happy to get home on Sunday though.  There is no better comfort than home.

In the weeks that followed, I was frustrated by bowel issues.  I was eating really carefully but I did lose a lot of weight because I was too constipated to eat much. Two weeks to the day after the surgery, I woke up feeling horribly nauseous. I had had stomach pain since the night before. I couldn't eat - I actually forced myself to break the diet and eat a piece of bland toast with tea.  But the nausea just got worse throughout the day.  I started throwing up in the afternoon.  I threw up several times and each time it was dark green liquid. By 7:00 I knew that something wasn't right so Orhan brought me to the ER.   The doctor told him it would take several hours to wait for scans and results, and that I might even be admitted. So he went home and I just tried to rest/sleep while waiting for results. By around 1:00 am, a nurse told me that I had been admitted. Turns out that my bowel was so inflamed from the surgery that I had a blockage.
Sometime before morning, they inserted an NG tube. I can honestly say, it was probably the worst medical procedure I've ever had to endure in my life. It was in for about 30 hours, draining the backup from the blockage. The whole time I struggled with constant gagging - I could barely turn my head left or right.  I could hardly speak and my voice got progressively more hoarse as the time passed.

Thankfully the surgeon who was overseeing my case felt that the blockage could resolve on its own, without surgery.  At the first sign of movement, she took out the tube and I became the happiest person in the hospital.  I started walking laps around the halls just to encourage movement.
I got to go home on Sunday (again), but I had to stay on a very liquid diet because I was still really inflamed and constipated.  5 days later, I started getting diarrhea instead - although it was more like a constipated diarrhea if there is such a thing.  I just thought that the 2 were connected to the inflammation, so I just waited until my post surgical appointment at week 4. They tested me and confirmed a C. Difficile infection.  Oh the fun! I was actually relieved at the diagnosis and the diarrhea stopped within 36 hours of starting the antibiotics. Then I was able to heal the constipation that returned by taking 6 Turmeric pills a day (for the inflammation) and stool softeners. 3 days later, I was finally as good as new, with most of the pain from my surgery subsided and my bowel issues finally resolved.
My chemotherapy was originally supposed to start on March 3rd, but it got pushed to March 17th so that the infection could finally clear.  The bonus of waiting an extra two weeks for chemotherapy is that by the time it started, my bowel issues had resolved and I felt fully healed from the surgery. The only signs that remain are this lovely 6.5 inch Frankenstein-like scar (22 staples!) that remain... and the bonus ... my skinny new self as I lost probably 15 or 20 more pounds in the time since the surgery - thanks to my reduced appetite, bowel issues and my lovely grain free diet.  How can I complain though?  I finally feel like I'm in a healthy body and I actually get excited in a fitting room now.  Sometimes you have to endure some hardships but there's always a light at the end of the tunnel.

A New Year, A New Way of Life

So, to continue the story of my diagnosis.... After waking up from my laparoscopic oophorectomy, it probably took about 12 hours to fully digest the words that my surgeon had said "It doesn't look good.  I think we're going to have to go back and take it all out." I mean I did understand immediately that he meant I would be needing a hysterectomy.  And this implied cancer.  But it probably took the full 12 hours to digest that reality.  I mean, cancer wasn't even on my radar 24 hours earlier.  But once it did, I just knew.  I didn't tell many people - I wanted to wait for the confirmation of the pathology, but in my heart, I didn't need to hear the pathology.  What I needed was just to hear about the next steps.
So here's the thing.  I am a Muslim, a convert - I have been for 18 years.  In the last 18 years, I would say that there have been times in my life when I have been really close to my faith, and other times, not so much.  What I can say with absolute certainty, is that those times in my life when I was the most faithful, I was at my happiest.  And at the times when I wasn't practicing the way that I should, I definitely felt incomplete.  For the last year or two, with the other health issues that I was experiencing (especially the fatigue), I was at a distance from my faith.  I would pray to God to help me get closer to Him, to living in Islam, but nothing would really make a difference - until that day I woke up from surgery.
There's something about a disaster that brings you closer to faith, closer to God.  And so of course I turned back to Him.  And honestly, because of that, I've actually been happier than I was for a long time before that.  It might sound crazy to say it, but I actually have to thank my cancer diagnosis for that.
The other thing that changed drastically is my motivation level to finally commit to the diet I had been trying (and failing) to do since the summer.  I gave up eating sugar and grains.  I started making sure that every meal had an abundance of vegetables - especially anything in the cabbage/broccoli family, because these vegetables have anti-cancer benefits.  There's nothing more motivating for sticking to a particular diet than "I need to starve these cancer cells so that I can live as long as possible!"
I also researched Ovarian Cancer as much as I could.  It's deadly they say.  And when it's stage 4, it is.  The 5 year survival rates for Stage 4 OC is bleak.  But the 5 year survival rates for the lower stages, even stage 3, is much better.  My 5 year survival chances, excluding my age and any other factors, is close to 50%.  Which means that I have a 50/50 chance of still being around in 5 years.  I choose to hope and believe that I will be among the survivors.  My positive attitude, my will to live, my adherence to healthier living choices, my supplications to God; I hope these all contribute to me being among those who live longer.  Is it a guarantee?  No.  Will the world end if I don't reach 50?  No.  My only hope is that I can live long enough to see my son grow up and become the wonderful man I know he can be.  If you're reading this, please pray that I can see that happen.
So, while I was making these changes to my lifestyle and my attitude, I was also anxiously awaiting the next steps in my treatment.   The oncologist ordered a CAT scan of my entire abdomen - which confirmed no sign of spreading to any other organs.  Then I met her on January 11th and she scheduled me for the full hysterectomy on January 26th.
I have to say that before my surgery, I really didn't tell a lot of people.  But I did tell my colleagues at the College, because I would be leaving on an extended medical leave.  They are the best work mates a person could ask for.  They have been so supportive.  The day before my last day teaching, they brought in a whole bunch of prepared meals, soups and smoothies that I could freeze or store, so that I would have a lot of food ready for my time recovering from the surgery.  They have been so supportive and I really appreciate them.  They also gave me a card, filled with encouraging messages, and a beautiful plant that I hope I don't kill ;).  Cards really do work to help cheer a person up ;)  I am so lucky to work with such amazing people.  I miss going in to the office and just laughing with them about random things.  #Blessed.
I will write more next time about my progress so far - from the hysterectomy through to the chemo, which I started on March 17th (2 weeks ago today).  Yesterday and today, my hair is starting to come out by the handful.  Guess it's only a matter of days before I finally have to bite the bullet and shave my head.  Mehmed's comment about my impending hair loss was the best, though, so I will leave it on that note.... he said "I'm really going to miss finding your hair in my food"
LOL.
Peace, love and have a great day :)

Health History and Infertility Struggles

So I haven't written in my blog for 5 years.  I had set it up originally to post about some of our travels in a way that we could share our adventures with friends back home, but with the increasing popularity of Facebook among my friends and family, the need for a blog seemed redundant.  

Now I find myself in a completely different place in my life and I need to pour out some of my thoughts and feelings into a journal.  I think this is for myself more than anything else. Maybe I want to have somewhere to look back in the years to come and say "Thank God those days are over."  Maybe I want to share my feelings with others who may also be going through these things.  If one person gains hope or courage by reading my story, then it won't have been for nothing, right?

So for years I have struggled with infertility.  I was blessed in 2003 with my beautiful son, Mehmed.  I have prayed for years that God would bless him with a sibling.  Most of my efforts in that regard were relatively passive; the most aggressive attempts I ever made were going for testing to verify that I did indeed have at least one functioning Fallopian tube, and trying a few cycles of Clomid.  I never went as far as trying IVF because I couldn't forget the fact that Mehmed's conception was nothing short of miraculous.  I clung to my belief in destiny, hoping that if it were meant to be, it would happen no matter what effort I put into it. 

Fast forward to 2015.  For many years I had been struggling with my weight, fatigue and low levels of motivation that I now look back upon and realize was a form of depression.  I struggled with PMS symptoms of bloating and ovulation pains. I believed that there was a physical cause to my low energy, but all I could do was spend all my time and energy on trying to get through each week at work.   

By the end of the year, my fatigue had hit a new low.  I found myself experiencing difficulty with concentrating and genuine issues with brain fog.  In January of 2016 I booked an appointment with my family doctor and saw her in February.  Even though I was also experiencing problems with PMS and weight loss, my focus at the time was to address my debilitating fatigue, so when I saw my doctor, that was the only issue I really addressed with her.  She ran a battery of blood tests and found that I was severely deficient in vitamins B12 and D.  

Knowing that vitamin B12 deficiency can take months to recover, I set about to do that.  I saw a naturopath and tried making minor modifications to my diet. After a month of sticking to my vitamin regimen, the brain fog started to lift.  After 2 months, I started to feel happier and more energetic. Around that time, I experienced a pinched nerve and excruciating pain in my neck that extended down my shoulder and into the tips of my fingers.  Again, my PMS and weight issues took a back seat.  I went for X-rays and an MRI that confirmed mild osteoarthritis and some bulging of the disc in my neck.  I went for physiotherapy and saw a chiropractor.  The pain eventually subsided and I felt fairly well through the summer. 

 I finally felt ready to overcome my hormonal issues.  By then, I was experiencing extreme PMS bloating from ovulation to period, but only about every three months or so.  In August, it was so severe that it caused constipation and frequent urination.  I looked (and felt) about 5 months pregnant.  My sister had previously been diagnosed with PCOS, and my research into PCOS had me convinced that it was the culprit behind my issues and inability to lose weight.  I also thought that maybe my right ovary had decided to adhere itself to my bowel again (in 2002, an ob/gyn had run a dye test confirming 2 blocked Fallopian tubes and had freed the right ovary from adhesions due to my ruptured appendix as a child). 

So I prepared a careful list of my symptoms and finally approached my family doctor for help.  I was determined to get a proper diagnosis and to follow a proper PCOS diet.  I hoped that if I could lose the weight, balance my hormones and perhaps fix my painful right ovary, I might even finally take the leap and try a round of IVF.  

My doctor did an ultrasound and notified me that they had found a large cyst.  She ordered an MRI and referred me to an OB/GYN.  She also ran a test for CA125. The CA125 came back normal.  Once again I researched CA125 and large cysts on Dr. Google and felt reassured that most large cysts are benign.   

I didn't get in to see the Gyny until the end of November.  He advised me that the cyst was 13cm and that a cyst that large would need to come out quickly.  He booked my laparoscopy for December 15th. At no time did my family doctor or the gynaecologist ever warn me that they thought the growth looked like cancer.  In retrospect, I think the gynaecologist knew, but he let me stay on my naive assumption that everything would be fine.  If anything, I was happy that I would finally be getting rid of my bothersome right ovary. 

At my pre-op appointment, it occurred to me that for months I was assuming this growth was on the right.  It was the ovary that had adhered to my bowel, had a blocked Fallopian tube and caused me a lot of pain.  So I asked for confirmation. I was stunned to learn that I was wrong. The mass was on my left ovary.  I was devestated. I had thought that my left was the only good ovary I had left, and he was going to be removing it. My dreams of getting hormonally healthy and losing weight began to fade.  I had managed to lose about 10 pounds since the summer and my optimism about my health progress began to fade.  

I promptly booked an appointment to discuss it with the gynaecologist before my surgery.  I wondered about why all my pain was on the right.  He said that I also had a smaller cyst on the right ovary, and I might be experiencing some referred pain.  His solution was to offer to take out both ovaries.  I balked. I'm 43 years old.  I was finally getting healthier.  I didn't want to go into menopause and give up my chances to try IVF at least once.  That was the first hint that he really gave that my growth could be cancerous.  "You realize that if it turns out to be cancer, we would have to do another surgery to remove everything?" He asked.  Of course. That makes sense.  But that only happens to a small minority of women.  That wasn't going to me me. 

So December 15th, Orhan and I went to RVH for my scheduled appointment.  We had to wait for hours, since my procedure was scheduled as the last one of the day.  I was nervous about the nausea I knew I would be feeling upon waking up.  

I will never forget that feeling of waking up in recovery.  Nausea washing over me.... I had to ask the nurse to bring me a cold cloth.  Orhan had been called, but hadn't arrived yet. As I sat there struggling to come around, Dr. M came around to give me his report.  He looked at me with such a pitiful look, and said "It really didn't look good.  I think we're going to have to go back in and get it all."  

My head reeled through the dizzying nausea.  He promptly left, and I was left dazed and confused. I found myself asking the nurses and a passing anaesthesiologist what that means.  But deep down, I clearly recalled my conversation with him only days before - that if it was cancer we would need to do a full hysterectomy.   That was the moment that the reality came crashing down.  My 13 cm cyst was no ordinary cyst.  It was cancer. 

Through the following week, my attempts to improve my overall health redoubled.  I quit drinking coffee and gave up sugar and gluten, in the hopes that I could starve whatever cancer cells might remain in my body.  When Dr. M called me 2 weeks later to confirm the pathology, I was not surprised. I was sad, but not surprised.  And that was how I celebrated the end of 2016.  

Stay tuned for the continuation of my diagnosis, diet, more surgery and start of treatment.