Day +108: The Good, The Bad . . . and Yeah, There’s Some Ugly in There, Too

Why it is that I do my best blogging in the wee hours of the morning when insomnia strikes, I will never understand.  I would much prefer my brain and heart work in sync at a more respectable hour, rather than the 2:42 am that reads on the clock . . . but, it is what it is.

“It is what it is.”  As I type those words, I realize just how often I have repeated them over the last eight months.  In fact, I just realized that it was eight months ago today – March 3^rd – that I drove myself to the ER with what I thought were heart attack symptoms, only to find out three days later that I had Leukemia.

Those five words are quite powerful, when you stop to think about it.  When uttered, they prompt a response, whether conscious or subconscious.  We have the choice to just let things go as they are – “it” being what it is . . . or we can choose to do something about it.  The way I’ve handled this journey – really, this whole year of challenges – has been to respond by saying to myself, “Okay, it is what it is.  Can’t change the diagnosis, can’t change what has happened.  But I CAN change how I react, and move forward, rather than being paralyzed by the challenges life has tossed at me.”

Most of the time it works, sometimes it doesn’t.  Sometimes I just have to be paralyzed for a while, until I have enough in me to see the way forward.

For those of you who have been following the blog, you know that I’ve been quite silent over the last three months.  There are a few reasons for that, some quite selfish.  Facebook has been an easy way to shoot out updates to most of the people I know, in an easy, one-paragraph format.  Most of the time, that’s all I’ve got in me.  And then, some of what I went through early on after the transplant was just too painful for me to think about and write about.  Days +3 through +13 were the ten hardest days of my life – ones I have a hard time thinking about even now, over three months later.  Every time I would sit down to write, I just couldn’t.  Every bit of energy I had in me was spent just trying to survive those days, literally minute by minute.  And, quite frankly, I also stopped writing because I was having my own personal pity party, feeling alone and overwhelmed by all that was happening to me.  I had lost a few close friendships along the way, and was still dealing with those feelings, in addition to parrying the seemingly non-stop onslaught of blows that the universe kept throwing in my general direction.  From work, to home, to health, I felt like I was drowning.  I can literally hear dozens of you yelling at me now, “Why didn’t you ask for help??”  Those of you who know me, you know that I never do.  I don’t know why, just not my nature.  Mom raised a fiercely independent girl, and I just never really think to ask.  I just do what needs to be done.  Something I’m trying to work on.

So, what’s been happening the last 100 days or so?  Let me catch you up just a little.

The Good

I healed pretty fast.  I was discharged only 16 days post-transplant.  A pretty remarkable thing, and shocked the living daylight out of me for sure.  Three weeks later, I was back to work full-time.  Originally, I was told it would be a six month minimum.  Of course, the level of disability benefits changing provided me with quite a bit of motivation.  J  My blood counts stabilized relatively fast, and I did not require more than a couple of post-transplant blood and platelet transfusions.  About six weeks ago, I had a blood test done to check what percentage of marrow in me was donor vs. my own.  And the results were 100% donor.  This means that none of my marrow is left in me – right now, I can’t reproduce the Leukemia.  Amazingly fabulous news, and cause for much rejoicing.  With the quick healing, came the desire to start getting active again.  Frankly, I miss running like you can’t believe.  So I started to try to walk… then shuffle my way back to the sport that helped me lose the 140 pounds almost five years ago, and helped me find my sanity in the process.  I found that my body had de-conditioned so much, that it was even worse than starting all over from scratch again.  I’ve never moved this slow . . . even when I weighed over 300 pounds.  Before all of this, I was running 8-minute miles.  Now, It was taking me 17 to 18 to walk/shuffle a mile, and at maximum effort.  And if I did that one day, it would take me two days to recover.  But me . . . being me . . . thought I just needed to keep at it, keep consistent, and my body would find its way again.  So I kept at it . . . and completed a 5K on September 30^th, nine weeks post-transplant.

And I was an idiot.  I learned a huge lesson after that – just because you CAN do something, doesn’t mean you SHOULD.  While it did not hurt me in the slightest, I realized that it was drawing energy that I desperately needed in other areas of my life, and delaying the full healing process.  So, I stopped shuffling after that 5K, and have switched to walking whenever I can.  This is going to be a long, slow comeback.  And, as my oncologists keep telling me, I have to find my “new normal.”  I may never be the same “me” again.  After all, I *did* have a transplant.  So now I am listening to my body even more, and trying to give it what it needs when it needs it.  Still a work in progress for a Type A, goal-driven personality with a pension for perfectionism . . .

The Bad . . . and the Ugly

I’m never really sure how much to share so that it is informative, but not complaining.  So far, I’ve just gone with the gut, not thought about it but just typed my heart.  I will follow that instinct again now.  Keep in mind, this is as much a journal and therapy to me, as it is anything else.  It is also a way for me to capture everything for a day when my boys are old enough to read it and understand my journey.  Now, much of what I go through is known to them only on the highest level, shared in a way that they can understand without being afraid.  They have had to endure so very much at too young an age.  I want to protect that innocence as much as I possibly can.

Those 10 Days

Even now, I had to stop for about ten minutes before I was able to continue typing (actually, it ended up being another six weeks…).  The last time I blogged about the early days post-transplant, I talked about the itching and then the migraine I had on Day +3.  Unfortunately, the migraine came back on Day +4, just as bad.  I was given the same meds as the day before, and they worked to alleviate the pain.  But just as the migraine subsided, my throat started to ache.  The nausea was gone from the headache, but I found I could no longer swallow without pain.  In fact, as the day progressed, I was unable to even swallow water.  My meds were all switched to IV, and there was discussion about finally putting me on IV nutrition (think feeding tube).  I couldn’t argue.  By the next morning, the pain was so intense, it was the only thing I could focus on.  Now, I have a pretty high tolerance for pain.  Or, at least I did before this illness.  I used to be okay until I hit about a 7 on a pain scale of 1-10 before I would consider taking anything for it.  I gave birth to my twins without an epidural (premature labor and was on blood thinners, so couldn’t have one.  Believe me… I wanted one!), and I survived.  But this pain just knocked me down.  Nothing that the doctors ordered gave me even an ounce of relief.  I had a 24 hour morphine infusion combined with oxycodone.  Didn’t do a thing.  It got to the point that I was suctioning out my saliva because I could not swallow it anymore.  I had painful sores in my mouth, up and down my throat and esophagus, and into my stomach.  All from the last round of chemotherapy.  This picture is not for the faint of heart.

But those sores are actually at the breaking point when they were beginning to heal.  It literally took months before I could swallow normally and had my taste buds back.  Finally, after about a week, the doctors came up with a pain cocktail that worked for me.  Dilaudid combined with a Fentanyl pain patch took the pain down to a manageable level.

I got about 24 hours of relief, and then the stomach pain started.  I have NEVER in my life had pain like that before.  I thought the previous ten days were bad.  They were nothing.   I was screaming, crying, wailing, begging for relief.  Vomiting, while sitting on the commode – I just wanted to die.  But thank God for the Dilaudid.  Within minutes, I had relief from the stomach pain.  They did scans and found no cause.  Probably just the blood from the sores working its’ way through my digestive tract.  There is so much more to those ten days, but that’s the best I can do.  I hate thinking of them.

Wish You Were Here, Pink Floyd