Friday, July 24, 2015

Glimmers of hope

I'm sitting in the Cancer Care Lab waiting to get my blood work done and I wonder....  has anyone ever broken down in tears in here....  like had a breakdown....  lost their shit.....  I've never really seen anyone with tears streaming down their face.  Cancer Care must do a really good job of fixing everyone up before sending them along their merry way.  Either that or people wait until they get out to their cars until they let all their sadness, anger and frustration go.  Maybe the parking lot is full of all the broken, sobbing patients.  I've just seen my doctor and now I sit in the lab chair and I want to cry, sob actually.  I'm alone for a moment while the technician leaves to enter my info into the computer and in that moment it's starting to sink in and I want to scream.  I am very familiar with all the people in here having been coming monthly for so long.  There's a new face there though and she looks over at me and smiles.  That makes me want to cry even more but I don't.  I get my blood drawn and leave "Have a good day!"

A couple of months earlier I was in for my regular check up and although my body scan had remained clear and stable, my brain scan had showed some activity.  A few new tumours and some growth in others.  I had been in to see the Neurosurgeon and was being scheduled for gamma knife #5.  I had been told that one of the tumours was in the pons again (not a good place to have a tumour) and that one of the other tumours had been bleeding.  (also not good)  This was terrifying news to get.  When I saw the Neurosurgeon and went over the scans with him I found out that this was not true.  Not sure how that mistake was made but was relieved that it was.  I walked away from that appointment on cloud 9, sang all the way home in the car.  Then realized that I still had to go for gamma to have a few tumours treated but happy that it wasn't worse.  It's all about perspective I guess.  On my way home I ran into my family doctor at the liquor store (yes, I felt like a glass of wine after that day) and as he was curious about how things had turned out having heard about the mix up,  so we had a quick conversation in the middle of the LC.  This is now my life..... talking to my GP in a liquor store about brain tumours, bleeding and otherwise.  You have to laugh ....... or have a nervous breakdown.  

So, at my check up I learned that a new drug had just been approved!  The combination therapy that I had tried to get on through a clinical trial a few years ago has just become available.  This combination is the drug that I am currently on now Dabrafinib plus a MEK inhibitor which combined in the clinical trials showed much better response rates.  So I was super happy to get started on this right away.  The drug that I am on now is working really great for me but this could work even better for longer and hopefully would help to control the tumours in the brain plus the side effects are minimal.  Great!  Sign me up!  I started on it a few days later. 

A couple of weeks later and I was in for gamma knife surgery.  Since this was #5 for me I knew what to expect and things went pretty smoothly.  It was really nice to catch up with my wonderful nurses Michelle and Olive.  They make the whole gamma experience so much more comfortable and bearable.  My sisters and I had a hair straightening party the night before so that we could calm down my crazy hair to make it a bit easier when it was time to attach the gamma head frame.  Because of the different drugs I've been on my hair has thinned out at different times and has now grown in as tight corkscrew curls.  The great thing is that it has grown back in!!  After the pre-gamma MRI the surgeons come up with a treatment plan and come and talk to me.  I have 4 tumours that they will treat and my treatment time will be 1 hour.  I am shocked at this since the last few times it was only 20 minutes or so.  This seems like a long time to me to be laying in that machine with my head bolted to table but I guess before I was only getting 1 or 2 tumours treated.  He returns a few minutes later to let us know that there is actually 1 more that they would like to treat so that would bump my time up to 1 hour and 30 minutes.  Yuck!  I pick out a couple of CD's (good thing I brought a few to choose from) and I am the first out of the four of us to go in for my treatment.  My sisters are just arriving to let Jeff take off to get to work.  It has been an early morning having to be at the hospital before 6.  I come out an hour and a half later with a throbbing head ache.  I don't always get the rebound headache afterwards but this time is especially bad.  They wrap my head with gauze and give me some Tylenol and a couple of hours later I am able to head home.  

I usually bounce back from gamma within a day or two but this time not so much.  I hadn't been having any side effects from the new treatment so that was a relief.  It's always difficult and scary to start a new chemo drug like that.  You just don't know how your body will react to it. Then I woke up one morning feeling like my head weighed 100 pounds.  My head was pounding and I felt like I was in a fog.  Before gamma knife I was having episodes of a knocking and throbbing sensation in the right side of my head and lots of dizziness.  I had 2 minor episodes after gamma knife and then it stopped.  But this was completely different.  I was hoping it was just a flu or something but it continued everyday all day.  The fatigue was draining me so that I could barely get through the day.  Something was wrong.  I called my gamma nurse and after talking to my doctor I was scheduled for a head CT scan.  Could it be swelling from gamma which was quite common and could be treated with steroids or something else.  Meanwhile a lump had appeared on my inner thigh.  I couldn't see anything on my skin but could feel this painful lump underneath.  I thought I'd just watch it for a bit and see what happens.  Within a week I had these painful spots which now had turned red and spread to both thighs and arms.  I knew something was going on but I really didn't want to sound alarm bells and have them discontinue my treatment.  I tend to suffer on through things hoping they will clear themselves up so that I can stay on the best treatment available.  I mean chemo isn't supposed to be easy right?  Some people are super sick through their treatments and still carry on.

I got a call from my pharmacist checking in on things to see how I was feeling.  I couldn't lie to her so I mentioned these rash like hives.  She was very understanding and encouraged me to call my nurse and even offered to do it for me since this was a reportable symptom.  These treatments are all so new so I guess they want to keep a really close eye on things because they really don't know all the side effects yet.  After a talk with my nurse we decide that it can wait until Wednesday when I'm scheduled to come in for my appointment.  Wednesday comes and my doctor, my nurse and a resident are all examining my skin which has become even worse over the last few days and I cringe whenever someone touches me.  My doctor says he doesn't think that it appears like melanoma lesions which is what he automatically thought when he heard about these spots.  Now, this didn't even enter my mind!  That my cancer was spreading into lesions all over my arms and legs.  Could that really happen?  No, it doesn't appear to be consistent with melanoma.  It may be Erythema Nodosum, a rash that would be caused from the new drug and causing inflammation in the tissue under the skin.  You need to stop treatment immediately.  No, I don't want to stop the treatment.  I want to be on the best treatment and this is it right now.  Can't I take Benedryl or something?  No, this can be fatal.  What?  How can a rash be fatal?  Our conversation went something like that back and forth.  In the end I get the point and realize that I have to stop it.  If the lesions go away we know they were from the drug.  If they don't I will be scheduled for a biopsy.  I still feel grateful that I can stay on the one drug and just discontinue the new one but I want to be on the best.  He does mention that we can look at restarting it as a half dose next month.  I hang on to this hope and make my way to the lab where I sit up in the chair and try my best to hold back the tears.  I can't explain what it feels like to have your treatment stopped.  It sucks!  I see these treatments as my tools to fix my body... help me fight defend myself against the cancer.  The more treatments you go through the emptier the toolbox gets.  So now I have 2 treatments in my toolbox, the one I'm on now & 1 more that would be very accessible in the future.  There is also 1 coming in the future that may be hopefully an option if I need it.  There is more hope than ever right now in the melanoma world.

My head CT scan comes back looking good and they see no reason for the symptoms that I'm having.  Then, within a week of being off the new drug the headaches subside and the fog I've been living in clears.  I realize just how terrible I've been feeling.  Sometimes you don't realize it until you're feeling normal again.  The skin lesions all turn into bruising which looked terrible but then cleared up on their own.  I did have one of them get infected which was a pain but healed on its own.  Shows me how great my body is still working at healing itself.  Obviously, this new drug was not only causing issues in my arms and legs but was also causing problems in the brain.  That's the last thing I need.  The next few weeks are amazing!  Feeling so much better I am able to have fun with Jeff and the boys.  Jeff worked like a madman trying to finish building our deck so that we would have the summer with the pool up and running.  What an amazing job he did!  It looks fabulous and we have been spending lots of time enjoying it.  It's our little oasis!  Now if the construction happening across the road would give it a rest we could have a peaceful summer!  We are having a super relaxed summer anyway with the boys.  No scheduled activities - just fun and we are loving it!  We had a fabulous time in Vancouver with Callanish when we went for the premier of the documentary I was a part of.  We all had a great time!  The premier was a great success for Callanish and received a lot of positive feedback and they had to schedule more showings.  Goes to show how important the work that they are doing is and how wonderful they all are!  My family doc was in Vancouver for a conference and saw the documentary while he was there.  He was quite surprised when my face popped up on the screen not expecting that I would be in a documentary half way across the country.  And I was shocked that he happened to be at the first conference that it was shown.  Very grateful that my health care team is always out there searching for information and anything that could help them with treating their patients.

I did decide to restart the Trametinib at a half dose at my last appointment to see if I could tolerate it and then slowly build up to the full dose.  I felt that because I started the drug and had gamma knife so close together that it was just too much for my body to take.  Maybe now I would be able to tolerate it better?  But I changed my mind the following day.  I am feeling so great now and want to keep it that way for the rest of the summer.  I think that sometimes I let fear dictate my decisions, especially when it comes to treatment.  Maybe that just isn't the treatment for me.  I went for my first post gamma brain MRI last night so will find out next week what kind of response I am having.  The hope is that it stopped all the tumours from growing anymore and will start shrinking them.  I have responded amazingly well to the drug that I am currently on and although they tell me it's a short term solution, I'm not so sure about that.  There is evidence now showing that there are a small number of people having spectacular responses.  (I love when my doctor says the word Spectacular!  It hasn't been a word that melanoma doctors have gotten to say in the past with it having had such a grim prognosis - until now!)  My doctor doesn't really know what to recommend at this point and says that because I've been on this drug longer than anyone else in Manitoba, he can't say for sure anymore that it will stop working.  Could this miracle drug be a longer term answer for some than originally thought?  I'll go with that.  And so, as long as these glimmers of hope keep shimmering so will I.  

On that note, I hope that you all enjoy this amazing summer!!  Don't forget your hats & shades and cover up!  xo Natalie





Monday, February 23, 2015

Live it with Love

Since I havn't posted since before Christmas, I hope that you all had an amazing time celebrating with your friends and family!  We had some really nice family time this year.  It was very quiet & peaceful which was much needed.  Hockey is starting to wind down now after a busy season & we are getting ready for a trip out to Vancouver.  We are heading out there for the premier of the documentary I was in a few months ago.  The boys are excited to be going somewhere new and to maybe enjoy some warmer weather for a few days.  It's been in the -40's here (with the windchill) and that is just really freaking cold!!!  Looking forward to a bit of a break from that!  I am excited to reconnect with everyone at Callanish, although a little nervous to see the documentary for the first time.  It's difficult to open up and then to have that on film for everyone to see.  I completely trust all involved in making the film so that makes it easier.  And the beautiful survivors that I feel so grateful to have participated with during this retreat...  These women inspire me and made it such a beautiful experience.  Jeff & the boys will get to see what I do when I takes off to a retreat & will get to meet all of the amazing people that are helping their mom in her healing.  Super excited for this!

Speaking of healing, it was good news on my last set of scans!  My bone scan was clear, as well as the CT scan of my body being stable.  My brain MRI showed no new tumours and NO growth in the tumours present.  This was a pleasant surprise since these tumours have been slowly growing in the last year.  I have since had another CT scan and will get the results back this week.  I have been thinking about all of these scans and the radiation exposure that put me at risk for a secondary cancer.  I've had people bring this up to me concerned that this will cause more issues long term.  Long term??  Could this possibly happen?  I have discussed this with my doctor previously but I think that it's time to bring it up again.  Because I am in such unknown territory it's difficult to know what would put me at higher risk.  The radiation or not catching things early enough. What is expected to happen is the chemotherapy will stop working and the cancer will spread quickly.  This is why I'm being scanned every 2 months.  But no one knows REALLY what will happen.  Which is a real relief for me and allows me to remain hopeful.  I've been on this drug longer than anyone else in my clinic which deals with all advanced melanoma patients in the province.  So who knows?  

So originally, I thought that 5 years would be a miracle but I threw it out into the world because, well, why not?  And here we are....  It was 5 years on December 9th since my diagnosis with metastatic disease.  I thought that we would celebrate with a big party but when the time came that just didn't feel right.  What 39 year old should have to celebrate being alive for five years?  Maybe it would be different if it were 5 years being cancer free.  I know that's a big milestone for people who are in remission.  I guess it's different for people living with incurable cancer.  So because I had reached my 5 year (goal) I felt like now what?  What happens now?  Do I set another goal?  1 year? 2 years?  Take it day by day?  My 40th birthday?  Are these goals even necessary?  Do they help me in any way?  I feel like it did give me something to hope for before.  Now I'm not sure what feels right....  It's like I'm living from one scan to the next, in these 2 month increments.  If anyone has any thoughts on this please feel free to share.  

I do still have hopes and dreams for my life, even though it is sometimes really hard to look into the future - a future that is so full of uncertainty.  I do still want things out of life.  I wonder about posts like these......

When I read this I wonder what this is meant to do.  Is it to show support to those going through cancer?  Is it to make people feel guilty for wanting nice things in their life when others are struggling with illness?  Material possessions are not important especially compared to life but it doesn't make you a bad person to want things.  I just don't really get it.  I would love a new house, a new cellphone, to lose weight.....  ummm....yes please!  Just because you have cancer doesn't necessarily mean that you give up all of your hopes and dreams to "win the battle".  This came up when I was on this last retreat.  We were asked to set intentions for our lives.  What did we hope & dream?  I felt an emptiness in the pit of my stomach.  Of course I hope for healing.  But it took me a while to go beyond that and it made me sad.  In all the business of dealing with cancer, I gave up on my dreams.  I just stopped thinking about it because it was too painful.  Looking into this unknown future had become so difficult that I focused solely on the present.  It's great to live in the present moment and really experience it and I have worked at doing this since my diagnosis.  But what about dreaming for more?  What's wrong with dreaming about the future that I would love to see?  I can only speak for myself but I want more....much more.  

This brings me to the whole what to say and not to say to a cancer patient.  There has been many articles that I've read online lately and I wonder...  Is there such a thing?  Aren't we all different?  Don't we all need different kinds of support?  For example, when people tell me I look great sometimes I hear (for a cancer patient) and other times when I am feeling great it just boosts me up even more, makes me feel healthy.  While my friend couldn't stand when people told him he looked great because he felt terrible and it made him feel like they didn't understand what he was going through.  (Yeah, I look good, well I feel like shit!)  You can say the same thing to 10 different people and they are going to react and take it differently.  Cancer or not.  And it depends on the day.  I don't believe that there is one perfect way to speak to people with cancer.  I believe that as long as you are speaking from a place in your heart of care & concern, that's all that matters.  I remember going to visit my cousin in the hospital over 5 years ago and really not knowing what to say to her.  I may have said the wrong thing.  Thinking back now I just hope that she knew that I cared and felt for her.  I felt that it was so unfair, that she deserved better.  I don't remember what I said but I'm sure it wasn't the perfect thing.  It didn't matter though.  She was so sweet and not at all expecting anything from me.  I didn't feel like she expected me to completely understand at all.  I tried but I didn't get it.  How can anyone get what you're going through especially when they havn't experienced anything like it.  I don't want anyone not to talk to me because they are afraid of saying the "wrong thing".  I don't think putting that pressure on people is fair and may end up isolating cancer patients even more.  I've been in both shoes and I think that being kind to one another and understanding is always the way to go.  Not judging one another or ourselves, just speaking from the heart.

So for all of my friends and family I am very grateful for your words of comfort.  You can never say the wrong thing to me because I know that you have nothing but good,caring intentions.  
Love to you all!  
My heart and prayers are with my Uncle T right now and my Auntie E who have both been diagnosed with advanced cancers recently.  Sending extra love to both families.
xoxo Natalie