Wednesday, January 18, 2017

A surreal week in the life... or Don't get cocky about your relative good health

I'm really still around, though the tumbleweeds rolling across this blog would lead people to believe otherwise.  Life is as busy as usual, and my health has been good; excellent even for a stage IV cancer patient.  In October 2016 I completed four years on Inlyta and it's really done a fantastic job for me.  Where at one time I had numerous liver lesions and one or two in the pelvis, along with the "buckshot" in my lungs, I'm down to one lowly liver lesion.  And as of last April, my buckshot was deemed "likely benign" by the radiologist who read my last chest CT.  The side effects of the Inlyta continue to be tolerable, so life has been just cranking along.

Then out of the blue, life screeched to a halt.  During the night of Saturday, January 7, I awoke to a sore feeling in my right thigh.  It felt like I had lain in place too long so I rolled over to a different position and went back to sleep.  In the morning it was still sore but I worked around it.  I even took my kids on a couple of errands, and noticed that my thigh was becoming increasingly tighter.  It was an annoyance; the pain wasn't too bad and I hoped I'd be able to walk it off.

Unfortunately it became more painful overnight and I slept poorly.  On Monday morning I let my boss know I would be working from home and called my doctor's office.  I was lucky enough to get a morning appointment with another doctor in his office.  The doctor examined me and concluded that I most likely had a hematoma within my thigh.  He ordered a CT scan to make sure.  Unfortunately the next available CT scan was on Friday 1/13, 4 days later.  The scheduler also mentioned that she had to space it out so there would be time to get insurance clearance for the scan.  I was not thrilled about this delay but returned home to work.

Monday night was more painful and sleep-deprived than Sunday night, and Tuesday morning brought with it new symptoms.  Whenever I stood up I became very short of breath and light headed.  I could only walk a short distance in the house without having to sit down.  I called the doctor's office back; the nurse put me on hold while she spoke to the doctor.  He instructed me to go immediately to the Emergency Department so that I could get a CT right away.  Jim took the girls to school; I took a quick shower (quick because I couldn't stand up for long) and we went to the ED.

They agreed that I likely had a hematoma, but were concerned that a clot may have traveled to my lungs so they ordered CTs of both my chest and my thigh.  I had a pulmonary embolism diagnosed in early 2012 as an incidental finding on a CT scan so I have been taking Lovenox shots since then.  The ED doctor believed that the blood thinner was making the internal bleeding worse so they gave me a medication called Protamine to reverse the blood thinner.  (I wondered later what one would call that... a blood thickener?  Is it like mixing up a roux to thicken a sauce while cooking?)  The CT scans showed no embolisms and no clot in the thigh, just the hematoma.  However, my blood pressure was extremely low, so I was admited to the ICU.  I was conscious the whole time I was in the ED but somehow missed that I was going to ICU, so it wasn't until later in the day when I was all situated that I realized I wasn't in just a regular room.

While in ICU I was given lots of IV fluids and was well cared for.  By Wednesday morning my shortness of breath and dizziness had gone away as my blood pressure stabilized.  Later on Wednesday I was moved to a regular room.  My hemoglobin took a dip around this time and it was realized while I had stopped taking the Lovenox to thin my blood, I needed to stop taking Inlyta as well.  Inlyta is successful in treating kidney cancer because it stops the growth of blood vessels, therefore inhibiting healing.  Sounds great except when you have broken blood vessels deep within your leg that need to heal.  So we stopped that as well.

While in the hospital I had ultrasound scans of both legs which confirmed the hematoma and showed no clots.  It was looking like I was going to be discharged on Saturday.  But then... later in the day on Friday I noticed that my entire right leg had swelled up; not only the thigh but the lower leg as well.  A MRI was ordered for Saturday; they were looking to see if they could find the cause of the hematoma, thinking that it could possibly be caused by a malignancy - in other words, a new tumor in my leg.  Fortunately the MRI ruled that out.

In the midst of all this, Jim and other family members were becoming increasingly concerned that decisions weren't being made very quickly on how to diagnose and treat me at the hospital, given the complexity of my medical history.  I was at a community hospital owned by my main hospital, Cleveland Clinic.  So on Saturday afternoon we requested that I be transferred down to the Clinic's main campus.  They found a bed for me that evening so I got to take an ambulance ride there around 10PM.  That marked a first in my cancer journey and my life journey as well - I've never been in an ambulance before.  It's definitely not the smoothest of rides!  But we made it there fine and I was admitted to the oncology floor.  This fact comforted me; I liked knowing that I was among medical workers who understand the weird ways cancer patients' bodies can act.

On Sunday morning I got further comfort.  I was seen by the oncology fellow working the floor that day.  He believed that even with the leg swelling, since my blood counts and pressures were stable, I would be able to go home sooner than later.  He told me he would consult with the attending oncologist working in the hospital that day, and mentioned his name.  My heart perked up at the doctor's name - he was the same oncologist who had treated my dad for his lung cancer from 1998-2002, and whom my dad held in high regard.  I know it's a coincidence, but it made me feel like my dad was looking out for me.  The doctor determined that there was no need to keep me another night, so I was discharged on Sunday.

I could at this point freak out because I am not taking my "chemo" drug right now.  However, I don't think it's a big deal.  Since it's been so successful in keeping my cancer at bay, I feel somewhat confident that when I go back on it, it will continue to work.  I have an appointment with my oncologist on Thursday and so we will discuss it then.

It was really hard to be away from my family and home while I was hospitalized.  The girls were able to visit a few times which was wonderful but heartbreaking too, whenever we said goodbye.  I know they were worried; Jim and I tried our best to reassure them that I would definitely recover.  My younger daughter (11) in particular showed her concern.  While visiting she sat on my bed and one evening laid down with me to watch TV.  She later texted me from home to tell me how special that was.  It made me cry good tears but also made me miss home even more.

We don't and probably never will know what caused the bleeding to start.  It's possible I had bumped my leg earlier in the day on Saturday the 7th.  Usually though when I bump into something I might not remember doing so but later will find a bruise.  There was no initial bruising of my leg.  Only now, several days layer, I'm starting to see bruising at the surface where gravity is pulling the fluids down.  The swelling in my leg is improving as is my ability to walk without a limp. I weighed myself at home today and found my weight increased by many pounds... dang fluid retention.  Later in the day it occurred to me that I've also been off my blood pressure medication for over a week.  My medication includes a diuretic.  At discharge I was told that I could resume taking it at home as long as I first took my blood pressure and my systolic number (top number) was over 100, which it wasn't the past couple of days.  I was able to take the medication today so hopefully I will get rid of this fluid soon.

What a week. Before this forced time away, I was already super busy at work.  Being away for a week didn't help things.  My coworkers were super awesome in my absence, taking care of lots of things for me while I was out.  Yesterday I logged in and jumped back into the fray; one day I might find myself caught up... maybe.  In the mean time I will continue to take my life as it comes and remember not to take for granted any of the good in it.