Wednesday, April 26, 2017

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 ๐Ÿ˜Š, 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 ๐Ÿ’•.  InshaAllah.

Sunday, April 16, 2017


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 ๐Ÿ˜ข.   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 ๐Ÿ˜ณ... 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.

Friday, April 7, 2017

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.