Thursday, March 15, 2012

"The" Post Part II - Sometimes the treatment is as scary as the disease

Now we had the diagnosis, it was time to figure out the next steps.

The following morning we dropped the boy off at daycare and headed into Toronto to meet with the specialist.  We were told that if you had to get cancer, this was the one to get.  It was 100% curable.  We had no reason to believe that we wouldn't be able to try to have children again a year after treatment was over as long as my HCG levels didn't spike again within that year.

This was such great news.  Our family wouldn't be what we were planning, but having kids further apart in years than we had planned seemed like a small thing compared to our last two weeks.  Our odds of having another molar pregnancy doubled.  So it would increase from .1% to .2%.  Remember, I love stats and those are stats that are good.

I had planned on continuing to work.  You know, I-am-woman-hear-me-roar kind of thing.  A very lovely nurse (who happens to share my first name) sat down and looked me straight in the eye.  She told me that I had a two year old at home that needed Mommy and that I needed to save the little energy I would have for him.  That is the exact moment it all became real.  Life as we knew it was going to change dramatically.

I would be able to have my treatments at the Credit Valley hospital which was much closer to our house.  The specialist was also on rounds there once a week and would oversee my treatment while I worked directly with an Oncologist there.  Great news to hear I wouldn't have to be going into Toronto every week.  I am most decidedly not a big city kind of gal.  However, based on my blood work that day they wanted to start treatment at the second level and start it right away.  Credit Valley wouldn't be able to get the chemo I needed in time so my first treatment would be at Princess Margaret on Saturday.

Friday I went into work and let my boss know I would be going out on short term disability.  She was amazingly understanding and had no issues at all.  My coworker was also very wonderful about it all and we sat down to come up with a plan of what he could cover for me and what would just have to wait until I could come back.  We went together to talk to the VP over the operations group we supported.

Now, if you worked with me, you will know exactly who I am talking about.  We called her "The Dragon Lady".  Not because she is horrible, but because she is tough.  She knows everything about the business and you sure as heck better know exactly what you are talking about when you talk to her.  She is a career lady.  No kids, no husband, and no interest in acquiring either one.  My complete undoing was when her eyes teared up and she held my hand and told me to do whatever I needed to do.  The business would figure it out.

We arranged for some friends to watch the Boy while we made the trek in and experienced my first chemo treatment.  I have to say, it wasn't all that bad.  The six hours flew by as we played card games and laughed.

Sounds kind of weird I know, but that is how Hubby and I have weathered through everything.  Hubby has such a unique perspective on everything.  He is that quiet guy who when he speaks, you want to listen because it will be hysterical!  The nurses even commented on how much they loved they way we brought laughter to the room.  It is a theme we heard often from various offices.

From that point on, I started going for weekly treatments at Credit Valley.  I was beginning to think that this whole chemo thing was like a paid vacation.  For the first couple of weeks I was high on steroids and feeling great.  Then it started.  I got these tiny sores all over my head and down my back.  The slightest touch to my skin was pure torture.  My child's hugs hurt tremendously.  I told my Oncologist about these symptoms, but she had never heard of these as side effects.  She left to research it and came back with her findings.  Let's say it all together now.  "These happen in less than 1% of patients".  I am so very, very special.

Around this time, I had gone kind of numb.  I was high on percocet all the time just so I could manage to just sit still.  As you can imagine, the house wasn't getting very clean and grocery shopping, let alone cooking, had become non-existent.  Hubby was already pulling all the weight taking the boy to daycare, working all day, picking up the boy from daycare, picking up something for dinner, feeding us all, bathing the boy, putting the boy to bed and then walking the dog.  He then would spend the rest of the night alternating between doing household chores and spending time with me so I wouldn't be so lonely.  I felt completely useless.  One night he eloquently said, "I can take care of everything else.  You just need to take care of you."

I knew we couldn't continue like this.  I found a lovely woman to clean our home.  She was an angel in so many ways.  Every week she not only cleaned our home, but gave me someone to talk to.  Things got a bit easier.  Then we learned a little about the kindness of strangers, and of friends.

We had good friends that insisted on bringing us over dinner every other week.  Amazing!  Suddenly we had vegetables again!  Shortly before this all happened, the boy's Kindermusik teacher introduced me to a new Mom forum called WonderMoms.  I had shared some of what was going on with me with them.  Well, his teacher took it upon herself to set up a schedule where someone from that board was bringing us dinner every  night.  Every night.  Imagine that.  I didn't know any of these women.  We had never met face to face and suddenly they were taking care of us when I couldn't.  Some neighbors we had  only met twice heard and she began making us dinner as well.   I really don't know if these women will ever know the impact, the joy and the comfort they brought not only to me, but to my whole family.

My Mom and Dad came for a visit over American Thanksgiving.  I was so proud of myself because I cooked a whole Thanksgiving meal, including homemade pumpkin pie, that was ready when they arrived.  It was the most I had done in months.  My Mom got to know these ladies as they continued to bring us food over their visit.  I think it brought her a lot of comfort that they were providing what she so dearly wanted to be able to do for us.  I think she went back home with a little more peace of mind.

We had hit a stride.  We were managing and the boy was thriving.  So of course, the chemo stopped working.  My HCG levels started rising again.  We switched to the first level recommended drug.  The third level was pretty scary and since the tumor had shrunk, they were hopeful the first level would do it and it did start to drop my levels again.

Then it was Christmas time.  We were supposed to go to Arizona for the holiday, but I couldn't travel.  I was really depressed about it, but determined to make it a nice one for the boy.  Honestly, Hubby and I weren't feeling it.  I did cook Christmas dinner for the family.  Again, pretty proud of myself there.  I was completely exhausted and spent days in bed after, but I did it and it was nice to know I could pull it off.

Midway through January, the first level chemo stopped working.  Not what I wanted to hear at all.  We were now left with a chemo cocktail.  I like cocktails, but I would prefer that they held the chemo.

It was an amazing invasive treatment. I would lose all of my hair, not just the oh-so-sexy 80 year old thinning that I had been carrying off until this point.  Honestly I didn't care all that much.  My hair has never been super fantastic.  But, it involved three days of chemo one week and two days the next.  They wanted me to do two days of the three day week inpatient.  I begged and pleaded to remain at home.  One of the oncology nurses volunteered to come in early one day so I could get my 10 hours of treatment that day and still go home to my son.

I want to take a quick break from my story.  I want to talk about Oncology nurses, my heroes.  These nurses are simply amazing.  Always greeting you with a warm and sincere smile.  Joking when you are down.  And let me tell you, they can do an IV like nobody's business. I don't know how they do it, but I am so appreciative that they do.

So we started the dreaded chemo cocktail and it was everything advertised.  I hurt.  I felt nauseous for the first time.  I got phlebitis in the back of one hand.  It was simply horrible.  I did one full two week treatment and was about to begin on my second round.

Hubby and I had mastered the art of the "kid is sleeping date" during this time.  We settled in to watch a movie, but I couldn't get warm.  As the night went on, my teeth started chattering and I couldn't stop shivering.  Hubby kept telling me I felt warm to him.  I was having a hard time breathing.  Hubby asked if I wanted to go to emergency.  I said no, let's just go to bed.  About one o'clock when I was shivering so hard I was shaking the bed, Hubby had had enough.  "If this was me we would have been at emergency hours ago.  We are going and we are going now.  Get ready."  Now if you know Hubby, you know he never shouts orders.  Never.  I didn't even try to argue.  He called his sister to come stay with the boy.

We went into emergency where I told them I was on chemo, I couldn't get warm and I was having a hard time breathing.  Well, if you ever want to skip the line in emerg, use this line.  I was immediately taken into a room.  Then these very obviously not oncology nurses proceeded to try and put an IV in me eight times.  Yes, that is right, eight times.  I do remember that part vividly.  Finally the anesthesiologist came in and put one in the back of my hand.  You know, the spot where I kept telling the nurses to try and they wouldn't.

About 15 minutes later they brought in a portable x-ray machine.  I didn't know, but they told Hubby the results.  I had a pulmonary embolism that was putting pressure on my heart.  It wasn't allowing me to breath properly nor my heart to work properly.  I had a 50/50 chance of making it through the night.  Hubby called my Mom.  It was time for her to come.

(to be continued on "The" Post Part III - Are you serious?)