The Raw Deal

Cancer…we all want the outcome to be packaged in a pretty bow and have a happy ending.  The truth is for some people it does end up that way, but for others of us…not so much… or at least not yet!

Ever since I was diagnosed, I have more or less had a positive attitude.  Sure, there have been lots of tough times, especially through chemo, but for the most part I thought if I followed what the doctors said, everything would work out fine.  Until now, most of my updates on this blog had a very positive and uplifting slant, but I figured I should share the raw truth about how things are going lately. 

Warning, this post will get very real… the good, the bad, and the ugly.

I was a nervous wreck all morning the day of the surgery.  Kenny and I got to Newport Beach early and we ended up walking down the pier to kill some time. We just needed a breath of fresh air before we encountered our next part of the storm.  This was so fun and I just wish the rest of the day had gone so well.

Once we got to the hospital I was taken back immediately to begin the wire localization.  This began with them locating the metal tracker they placed in my cancerous lymph node way back during my biopsy in March.  Well, after having chemo, the technicians and radiologist always have a hard time finding this tracker. This procedure normally takes about 45 minutes or less…but with me it took over 1 1/2 hours.  They weren't able to find the tracker very easily.  Of course the process is very painful and it reminded me of the biopsy I had months ago.  The good part of this was since they had such a hard time finding this node, they thought that the cancer had shrunk or disappeared. 

So, what did they do when they found the tracker? They took a wire and put it in my skin and guided it to the cancerous lymph node. Once they found that, they injected a needle in my nipple and had radioactive dye injected to get through to the cancerous lymph nodes.  After I had this done I had to go get a mammogram with a wire sticking out of me to make sure it looked ok before I headed up and got prepped for surgery.  Ouch!  They finally taped the wire to my body and it felt a little bit better.

The past 5 days after my surgery have been horrendous.  In the hospital I had a nurse coming in to check on me every 15 minutes for the first several hours and then finally it lightened up to checking on me every 30 minutes for the next few hours then to every 2 hours.  All that to say I hardly slept.  Yes, it was good to be released from the hospital the next day, but that doesn’t mean I felt any better.

I would wake up feeling like a ton of bricks were on top of me and with hardly any ability to move my arms.  Try sitting up with tubes coming out of your body yet you feel so weak and dizzy.  This has been my life for days. I started eating a little bit of food which sounded good but really with all the pain meds the hospital gave me it makes me sick to my stomach.  I have drains coming out of me which gross me out and I have to have them emptied out every so often.  I can’t even drink out of a straw/cup by myself without help. 

I’m thankful to have come home early but it has been no walk in the park. I have to literally sit up while I'm sleeping so that it is less painful and it is also easier to get out of bed.  I still have major pain in my arms where I can hardly carry anything in my hand. The pain in my left arm where the lymph nodes were taken out is unbearable at times.  It feels like I constantly have a broken shoulder/arm.  Every time I need to go to the bathroom I have to wake Kenny up so he can help me out of bed and make sure I don’t fall while walking to the bathroom.  We are definitely in our “in sickness” part of our marriage vows right now.  

Every time I need a change of scenery to go downstairs Kenny has to make multiple trips up and down the stairs to make sure I have what I need just to sit in the recliner.  The first time I made the trek downstairs it took 40 minutes to get everything I needed.  Now we are down to about 10 minutes!  I have multiple pillows that go under my arms, medicine that needs to come down, crackers to eat so i’m not constantly getting sick on my pills, water, ice packs, and the list goes on and on.  Kenny has no easy task and since I’m pretty immobile he has to do almost everything for me.  At this point I can’t even shower myself, go to the bathroom myself, wipe by myself… you get the drill.   At this point everything has been taken away from me.  I hate that I’m not independent.

More than the fact that Kenny and I having to deal with this crappy disease, it breaks my heart that our boys have to see so many adult things.  I wish they didn’t have to see most of this.  Because I’ve been so sick in the morning, my boys usually don’t even see me before the school day starts.  They come home after school and are just as much a part of the process as Kenny.  One of them usually comes in and checks on me to see if I need something.  All three of them have had to step up and help out and not just be a kid.  It hurts me more than anything that they are dealing with things that no one else their age is having to deal with.  Most kids get to come home and play and do other things they enjoy.  Not my boys… they come home and help take care of their sick mom yet at the same time try to work on their school work, pass their tests and still try to be “normal” boys. 

It kills me that I can’t see my kids play sports or drive them to school.  I hate that I can’t go see their games and just joke with them about life.  I only have the strength to ask them how their day was before feeling horrible.  I haven’t been able to sit and eat dinner with them because I’ve been so sick.  

Today we received the pathology report from the surgery that was less than good news.  The doctors were in utter shock and disbelief.  My heart shattered as I was talking to the doctor today.  I’m tired, I’m overwhelmed and I’m just plain irritated.  Fifteen minutes before the surgery, the doctors would have bet money that I had cancer in just that single lymph node.  Well, they removed 9 lymph nodes and the pathology report showed that of those, 5 of them had mini cancer tumors in them.  These tumors are small enough where they haven’t shown on any scans, because apparently it’s 2017 and there is not enough technology to detect 3mm hunks of cancer.  Yep, all those scans, ultrasounds, etc, couldn’t detect these.

This week we will meet with each of our doctors to determine the next path to take.  As of now, we have a major choice to make: do I have another surgery immediately (within the next week or two) to take more lymph nodes out, followed by radiation, or do I skip the extra surgery and just do the radiation?  

Having the surgery would give more peace of mind that more cancer is removed, but at the same time, has downsides.  In addition to it being another painful recovery, it increases the risk of lymphedema, and a lifetime battle with a swollen arm.

The flip side would be just having radiation and hoping that would be enough to kill any remaining cancer cells, and that cancer wouldn't reoccur later on down the road.

It is tough thinking about another surgery within the next week or two as I’m still not recovered from this last surgery (only 5 days ago).  My heart hurts, I’m sad, and I feel at this point, why can’t one thing just be easy for me in this process?

While on the outside it might look like our family has it all together, we truly don’t.  We are falling apart just like anyone else going through a crisis.  Just step inside our home for a few minutes and you’ll see a sick mom who is trying to just make it through the day… You’ll see a dad whose heart is breaking and is torn watching his wife be so ill yet trying to manage and parent 3 boys… And you’ll see those 3 boys who are sad inside because of what’s going on yet still trying not to think about it.   

So there you have it… the raw truth. I bet you’re hoping I’ll end this post with an uplifting and hopeful comment, but I’m tired.  More positive and uplifting things might come in a future post, but for now, it is what it is… The good, the bad, and the ugly.

Kimberly