Adventures of The Traveling Lab Rat

First, I need to thank some people in my life for being really incredible to this lab rat last week: Deb, who provided a place to stay and food to me and my parents when we were required to stay a full week in Scottsdale for Mayo appointments; my parents, who chauffeured me around Scottsdale from Tucson; and my monkey, who came to visit me while I was away from him for the first time since…well, we started dating.  Milo and I have always spent some time together daily, even if it was just before bed, since we became a true couple.  It was exceedingly difficult to be away from him for days at a time and I hope that never happens again.

The week at Mayo was trying in more ways than being away from home.  There were long days of fasting for PET scans and CT scans, which I’ve already admitted to hating violently.  Really, how good can it be to send a drug through my system that sets my body on fire?  I hate CT contrast with a passion and not being to eat when you already have stomach and weight issues is just cruel.  Two days with afternoon fasting-necessary scans was just a lot and I know I cried often because of the stress.  Most of the week wasn’t so bad: blood work, doctor’s appointments and two treatments (Tuesday and Friday) with the drug, which is dissolved into ten milliliters of water in a syringe and pushed through my port-a-cath over five minutes.  Before each treatment they draw blood and get a urine sample.  Sometimes they do blood work after the treatment too.  On the first treatment day, they did several labs before my afternoon PET scan and thankfully they can draw them all from my port so I don’t have to be stuck too often.  I’d like to have some veins left when all is said and done.

Overall, the lab rat experience is weird.  I don’t really see a doctor or lab results as often as I did with Dr. Brooks.  Mostly, I see a chemo nurse, who gives me the drug, and the nurse researcher, who asks about my symptoms.  I actually haven’t had any of the expected side effects from the drug; other patients were reporting arthritic pains.  I haven’t had that at all, but I have been nauseous and vomiting again; we’ve decided that’s the cancer and not the drug, however, since it started before the trial.  I am down in weight, lower than I was last year when I was first diagnosed and dropped weight and even lower than when I was dieting and exercising.  It concerns me because I have been trying to eat and calorie load to keep some weight on.  Dr. Brook’s words of “stable disease means I don’t watch you waste away” haunts me every time the numbers drop on the scale.

Speaking of the good doctor, he actually called to check on me Friday.  He wanted me to know he prays daily for my miracle and wants me to keep in touch with him no matter what I need.  It means a lot that a doctor went out of his way to call, to insist I keep texting him, to pray for me and all that after he handed my care over to someone else because he ran out of options.  It says a lot about his character and I couldn’t have asked for a better oncologist through all this.

One last thank you to Deb’s friend, Jocelyn, who was kind enough to do some reflexology work on me.  Jocelyn is a survivor too and talking to her during my treatment was probably the best part of my week.  She really seemed to understand me in a way no one else has and I felt bonded to her instantly.  One thing she said resonated with me most and helped me feel much clearer: “Remember, whether you live or die, you are going to be okay.”  It’s true.  I don’t really deal with the aftermath if I don’t get my miracle, though I will so that’s moot (power of positive thinking!)  Surviving may mean dealing with infertility (good, I didn’t want to pass on cancer genes anyway!) and always carrying around the black cloud of cancer (because I will be tested for it often for the rest of my life), but I survived.  So I’m still here to go about my life knowing I made it.  I will be okay.

I will also continue to currently be a lab rat.  Twice a week for the foreseeable future.


Cancer Takes No Vacations

After the lung biopsy, I was pretty much out of commission for a while.  The pain had me taking narcotics pretty much every four hours and I was doing a lot of sleeping.  I’m not sure I would have been so gun-ho about the biopsy had I known just how terrible the recovery for it would be.  Another case of hindsight being twenty-twenty.

I was going to blog a few weeks ago about a wonderful experience I had with a Native American medicine man who completed a spiritual healing on me.  The more I thought about blogging the experience, though, the less personal it felt.  The experience was amazing and the rest that came afterwards was probably some of the best I’ve had in a long time.  So instead of detailing my time with my spiritual healer, I will instead tell you that sometimes there are forces at play besides medicine that can heal a body.  I know so many believe in prayer, but I really wish medicine would embrace just how much a spiritual healer can do for those that believe.

What really made me get back onto the blog today was my latest trip to the Mayo Clinic.  I’m officially in the trial, with my first dose of medication next Tuesday.  This week, they had me there for another PET scan and a CT of the chest and abdomen/pelvis.  They also drew blood work and completed an echocardiogram to see if my heart was functioning well.  Apparently, my heart is in good shape (ejection fraction, for those in the medical field, was sixty percent which is about average).  The cancer, however, is…worse.  The tumors that we knew about (liver, lymph, lung and spine) are all still there and all bigger, with the exception of the spinal tumor which they didn’t size.  The one on my spine, however, has created a compression fracture, which is why I am still having back pain.  The tumors have spread into my pelvis, so Dr. H wasn’t crazy when he said he couldn’t find my ovaries because all he saw was a mass.  The tumors have also grown into the omentum, which is a lining around the organs.  So while I have been taking a break from chemotherapy to get onto the trial, my cancer has taken this time to spread.

Devastated is the only word I can tell you to describe how I felt.  I know I’ve returned to my primary symptoms: nausea, loss of appetite, slow digestion and vomiting.  I assumed the cancer wasn’t exactly going to stay at bay without some kind of drug.  Heck, the drugs weren’t doing such a hot job of keeping it from growing.  Thinking these things and knowing them to be true, however, are two very different creatures.  Having another doctor confirm that I need a miracle, that this clinical trial needs to be a miracle, for me to live…

I’m only thirty-one-years-old.  I have only been married a year and a half.  We planned for babies.  We planned for a future that lasted more than a few years.  This is one black cloud that clings to me constantly.  I pray daily for my miracle…but I can’t justify why I deserve it more than some baby born too soon or a cancer stricken toddler who has so much life left to live.  I feel like it’s selfish for me to ask God to heal me when there are so many more deserving.

And still I ask.  I beg.  I cry.  I plead.  I bargain.  I hope, but not so much to be heartbroken if this too doesn’t work.

Because I need a miracle to see my next birthday.  To see children someday.  To spend thirty years with the man I’ve waited my whole life for.

So if you pray, can you toss me into that list please?  I feel like I have some job left to do here, but I don’t know what it is and I need more time.

Or maybe I just want more time.  I’m trying to trust God’s plan, but right now I’m so scared to learn what that is for me.