Saturday 27 June 2015

Drastic Changes

Life has taken some drastic twists over the past 2 weeks.  On Friday, June 19 I had a check up with my Oncology team.  It was a regular check up that I had postponed due to our trip to Memphis.  But as the day approached, I knew it was time to meet with my team to talk about the increasing pain I was having in my back and legs.  To say that concerns were raised would be an understatement.  Before I left my appointment I was scheduled for a CT scan, sent for a blood test, and before I knew it I was back in the medical scene going for tests and waiting for results.  I was fortunate to get in for a CT scan already on Monday.  On Tuesday I was called back to my oncologists office to be given some devastating news:  the cancer has spread to various parts of my body.  The big concern is that it has moved to my spine; I have compression fractures on my lower spine that are the cause of my limited mobility and the pain I'm feeling in my back and legs.  My entire lymph system is being affected by the cancer and has caused a lot of swelling in my lower body.  As a result I have also developed multiple blood clots in my legs.  The tumor in my pelvis has also grown and is putting pressure on my legs.  There are also some suspicious spots on my lungs.  So I basically went from thinking I was having a few complications to realizing my body is slowly shutting down.  This was a lot of information to process in a few hours.  We are shocked and obviously devastated by this news.  I was immediately admitted into the hospital to get some things under control.  I needed blood transfusions to get my blood levels at a safer level.  My haemoglobin dropped significantly.  I also needed to get my pain under better control.  My doctors also encouraged me to start radiation on my spine to reduce pain as quickly as possible.  I started radiation on Thursday already.  I honestly couldn't believe I was doing it again when I entered the radiation doors.  I vowed I would never put my body through this again.  I'm only doing 5 treatments in hopes that my pain will be lessened.  I will remain in hospital until all of my treatments are complete.  (I did get to come home on a weekend pass, but will be back on Sunday evening).  I am also in the process of transitioning to becoming a palliative care patient.  I will be coming home to sleep in a hospital bed, use a walker to get around and have home care involved in caring for me.   I honestly can't believe how quickly this is all happening.  I feel like my life is evaporating before me very quickly.  I've become somewhat of an invalid who needs help with everything so quickly.  I honestly wake up every morning and can't believe how I got to this point in a matter of a week.   But in all honesty I've probably known things were getting worse for a while, and I was in denial.  I was trying to hold it together when really I was in a lot of pain and having a hard time doing things on my own.  So even though this week has been devastating, it's been good to get my pain somewhat under control.  It's relieving for me to have the freedom to admit I can't manage and I need lots of help.  The hardest part is having my family have to watch me deteriorate so quickly.  The reality that I have entered the final stages of life is shocking and hard to believe for all of us.  We know that the next few weeks of changing our home into a health care facility will be hard on all of us.  We will be constantly adjusting as we make changes to accommodate this new life.  So far, we feel a supernatural peace about all of it.  We know that although this is not was we have hoped for or prayed for, we know God is in control and He will carry us through this somehow.   Don't get me wrong....this has not been easy.  There have been lots of questions and anger as well; but ultimately we know He has the last word and He gets to decide.  We've already had so many people help us in various ways.  We are so fortunate to have so many people caring for us and praying for us.  There are many days we don't have the energy to pray and it's helpful to know others are doing that for us.  Our families have come along side us in amazing ways.  We are surviving so far.  I know all of this will be shocking for some of you to read.  It's shocking for me to write.  We are doing our best to take one moment at a time and enjoy each other as much as we can.

Monday 8 June 2015

Honest and Real

I've always been brutally honest in my writing, and many have commented on how I've kept things "real" through this whole crazy journey.  However, I definitely would choose to write about difficulties after they have passed.  I feel more comfortable being honest about something hard after it's over.  When life is really hard I tend to hibernate: avoid people, stay at home as much as possible,   and definitely don't let people see me struggling.  However, the past 2 weeks have been hard, and I've found myself in the situation where I have to be real with lots of people.  It's been good for me to be honest in the moment and let people see that I am suffering.  First let me explain the struggles I'm having:  I have had a lot of pain in my lower back, which means I've been taking a lot more pain medication.  Which leads to a bloated tummy that makes me look like I'm 4-6 months pregnant.  I've also started having swelling in my legs.  We're not sure why the lower back pain for sure.  We have a few guesses, one being that I've lost all muscle in that area and need to build it up again.  Everything (muscles, tendons, ligaments etc.) is so tight that it's really painful to move.  I try to take short 10 minute walks throughout my day, but lay in pain once I'm home.  I try to stretch, but again need to take pain meds after and lie still for half an hour for the pain to pass.  This is a huge concern for us right now.  My physios (including Darryl) are somewhat baffled by this pain, which doesn't seem to be lessening.  Another issue that has come up is my lymph system can no longer keep up with my lack of lymph nodes.  So I have lots of swelling in my legs as well as my abdomen (again contributing to my pregnant look)....my lymph is draining is these areas but not leaving my body.  So just in time for the heat, I get to start wearing compression leggings.  So all of this has lead to a fairly miserable state of mind for me over the past few weeks; many days of feeling sorry for myself and completely frustrated with my current life.  It would definitely be a time of choosing solitude most often; however, I've been put in situations where I had to face people.  I've learned that most people are completely ok with me being in a sad state.  For example, I went to my friend's green house to get plants for my deck pots.  The owner (a good friend of mine) graciously offered to help me fill my pots with soil and plants!  While I was there, 2 other friends showed up.  I had no place to hide and honestly felt so miserable that day, I had no choice but to be honest about how I was feeling.  I was in pain, and couldn't hide it.  A few days later, my Voyageur staff colleagues came by with delicious food to spend a few hours with me.  Again I was having a hard day with lots of pain.  Part of me wanted to cancel, but I missed them and wanted to see them.  So they came, and I lay on the couch and was honest with them about how I felt.  When everyone left, I felt better than before they came and realized the distraction for a few hours had been good for me.  I think most of us prefer to look like we have it all together.  We like to appear well (and healthy).  But the reality is most of the time, we all have something messed up in our lives.  We tend to keep our messes hidden, unless we can't.  I don't have the option of hiding my suffering, but being real isn't so bad.  In fact, it allows people to care and show their concern.  My challenge to each of you is to be real.  Let people in your life know what your life is really like.  Let people close to you know when something in your life is hard, or causing fear, or hurting your heart.  Most people will not like you less; they want to help.  I have learned that there is healing in letting others in to the secret parts of your lives.

If you pray for me.....please pray for wisdom about my back and relief from all the pain, so I can get mobile again.  Pray for strength and endurance.  Living 24 hours a day with pain for this many months is so exhausting.  I have been reminded this week that suffering creates perseverance.  I struggle to be ok with where I am because I want to be feeling better, but I can't change it.  I'm trying to find contentment even in my state of suffering, which is so hard.  But even when I'm suffering I have lots to be thankful for.  I know God is allowing me to be here right now, but oh how I pray for relief to come soon.