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.

Sunday, March 15, 2015

Still kicking

I am still here, still alive and well.  It has been far too long since I last posted.  The reasons are various.  Mostly they revolve around time and energy, two things I perpetually lack.  It has never been my intention to desert the blog, but getting myself to stop whatever else I am doing and try to commit my thoughts to cohesive sentences often feels like it will take more effort than I have.

As I think about this, I realize that in many areas of my life, I find myself taking the easy path when possible more than I really should.  I know I will be happier if I push myself in whatever way needed but just can't bring myself to face the task or issue at hand.  And many times, there are no immediate or significant repercussions to my inaction.  One notable exception is dealing with finances.  But in general, I am basically just wasting time.  I almost hate to add that the fact that I have attention deficit disorder contributes as well.  Ironically, it seems trite to use it as an "excuse", though I really do have difficulty focusing, especially for a sustained period of time, on any one activity or task, mostly in my personal life.  At work  I can focus more, maybe because my employment is dependent on it, maybe because I have fewer distractions than at home.  But I'll throw it in the mix anyhow.

It's a ridiculous way to treat time, since I am acutely aware of the fact that none of us is guaranteed  an abundance of time.  I have been very fortunate that my cancer treatment has gone well enough that I can almost forget the seriousness of the situation.  Even having, much less expressing  that thought, would have been crazy to me before it was my life.

In May it will be 10 years since I was diagnosed  And aside from being a Cancer Patient, I am healthier now than I was 10 years ago.  In the past 3-4 years, I have lost over 100 lbs.  The weight loss started when I was on the clinical trial in 2012, on a drug (Afintor) that ultimately did not help me, but which really decreased my appetite.  I have periods of less appetite still, though not as significant as they were while on Afinitor.  All of the drugs I have taken have also had diarrhea as a major side effect; for me, it has been most significant on my current drug treatment, Inlyta.  My body reacts to various foods I eat, especially to meat, and to anything with a higher fat level.  You may remember when foods with Olestra were popular; their popularity waned as people ran to the bathroom after eating foods with this fat substitute.  I think my body's reaction to fat while on Inlyta is similar, in that shortly after having something high in fat, I need to be near a bathroom for quite a while.  I do forget sometimes, and after I have eaten an offending item, my body reminds me.  It's kind of a nice "aversion therapy" since I will often make different choices to avoid the bathroom.

But the weight loss has begotten more weight loss.  As I've gotten a bit smaller, and have been able to SEE the weight loss on my body, I've been able to stop and look at my eating more consistently, which has helped me to make better food choices in general, and to recognize emotional triggers for me to overeat.  Which is not to say that I am "cured" of overeating.  No way... I can still eat without hunger even when I can identify the stressor that my brain has historically wanted to quell with food. However, sometimes I am able to stop the emotional "stuffing" sooner, and am able to talk myself out of overeating during some of my trigger times.  Also, as I continue to lose weight, I definitely find it easier to move, While I still don't exercise consistently, I am certainly more active throughout my day.

So, lots to think and talk about above, as well as still unexpressed in my head.  Over time, I intend to explore more of these topics and ideas here.

Sunday, September 08, 2013


When I was a young girl, I was enchanted by the idea of having pen pals.  This was the 1970s after all, when written letters were the best way to communicate long distance.  Plus, growing up as a fat kid, I didn't feel like I had any sort of popularity; I had friends, some of whom I'm still friends with today, but I always felt like the outsider in any group of kids.  Over the years I had various pen pals, most lasting just a short time before someone (usually them) stopped writing.  I remember a boy from England, and a girl from Illinois whose sister started corresponding with my sister for a while.

There have been two pen pals with whom I am still in contact.  I met Lisa through a pen pal match-up in Teen Magazine.  She lived in Florida, which sounded so exotic to me.  We had similar interests, and wrote back and forth over the years, through high school, college, and young adulthood.  I was even lucky enough to be able to attend her wedding in 1993; it was fantastic to be able to meet her in person, meet her new husband, and her family, about whom she had written over the years.  As life got busier, our correspondence dwindled, though we continued to exchange holiday cards and celebrated each other as our families grew - three boys for Lisa, two girls for me.  When Facebook started getting popular, we found each other there and that has been a wonderful way for us to keep up with each other's lives.

My first and longest distance pen pal was a girl by the name of Bernadette from Australia.  I had seen an ad for international pen pals in the back of one of my mother's magazines, and they matched me with Berni.  It was so exciting to meet someone who lived so very far from Ohio.  She  would write to me about the goings on within her a large extended family, which fascinated me, as my family was very small. The letters and photos traveled back and forth over the years, though they too slowed down as life became more hectic.  Berni and her husband Nev's family grew to a total of 5 children (ages currently ranging from 26 to 13), so the fact that she ever got a minute to write was truly a testament to her desire to keep up our correspondence.  We've spoken by phone over the years; one of our most memorable calls occurred on September 11, 2001 when I was able to reassure her that I was fine, and we discovered that we were both watching the same images on CNN while on the phone.

Berni is not a techy type person at all; however, her kids are, of course, so I have gotten to know some of them via Facebook, and so Berni and I have communicated through them... as well as through emails at times. We used Skype once and plan to do it again but haven't coordinated our schedules with the time difference between us.

Given all of that, imagine my surprise when I got a message on Facebook from Mel, her oldest daughter, saying that for Berni's 50th birthday this year her kids were sending her to visit the US, including coming to see me and my family... wow... I could hardly believe my eyes.  Berni and her son Dave ended up being the travelers; Mel sustained a back injury earlier this year that is healing but travel was nixed by her doctors.  

What a fantastic opportunity this is!  We have long dreamed about meeting but thought that it would likely take a lottery win for one of us to make it happen.  Jim and I still want to visit Australia at some point in the not too distant future, but haven't set any goals/plans about that as of yet.  The girls are extremely excited about meeting "Aunt Berni" and Dave, and my family is all excited too.  One thing that Berni said they would like to do while in Cleveland is to attend a baseball game.  Luckily, it happens that the time they are here overlap with some of our final home games of the season.  We gathered a group of family and friends to all go together and it's Dollar Dog Night so everyone can enjoy some hot dogs, with stadium mustard (actually Ball Park Mustard) for those who like it.  We'll take a little driving tour of the area, including seeing the house where I grew up, and maybe some other sights.  Their visit here will be on the tail end of their trip, after several days of sightseeing in the eastern US and Canada, so I'm sure some relaxing chat time will be good.  

My mind went into overdrive the moment I realized this visit was really happening.  We've had lots of plans to fix up the house, to get the girls moved into their own rooms, to get rid of all the excess "stuff" we've accumulated over the years.  Of course life doesn't work as smoothly as one's plans.  There is a lot that's not going to get done before their visit, though the girls will be moved, thereby giving us two guest rooms to offer.  We'd planned to get the girls' rooms repainted as part of that whole process, but we haven't gotten there yet and so we may just move them now and paint later.  So then we basically need to clean, clean, and clean, and get stuff out of the common areas that doesn't belong.  Exterior projects have been more successful, fortunately.  We had already gotten a new roof this spring, a badly needed improvement.  I had been itching to get a new front door, as a decorative piece of ours just fell off one day and could not be reattached.  So we got a lovely new door with new side windows, which I really enjoy more than the old ones.  And we contracted with the same company that did such a great job on our roof, to re-side the house.  We have aluminum siding that was put up when the house was built in 1983 and it looks bad.  The color has faded over the years from a bluish gray to barely white and chalky.  There are some dents and the north side is pretty green from moss.  We are getting vinyl siding in a medium gray color, in keeping with the Cape Cod style of the house.  The new door is a burgundy-ish red so will look really good with it.  The company called to tell us they are starting on Monday morning... so it will be done before Berni and Dave arrive.  As we hadn't heard anything from them in a while and knew they were backed up with work, I figured that with our luck they would be here pounding away while we had our company.

Of course Berni has told me that she wouldn't care if I lived in a tent as long as she got to see me.  I on the other hand would prefer to have the house the way I picture it in my mind's eye.  Plus, I like the idea of feathering my nest as it were, so that I can just enjoy my home without worrying about so many projects.  I have learned however to adjust my self-expectations so that I'm okay with what does get done and not overly stressed about it.  Jim is one person and can only do so much.  The girls can be helpful but can't be expected to spend all of their free time on home projects.  I wish I had more time but that whole full-time job thing tends to keep me away from home longer than I would like.  Also, despite the fact that I am on the whole doing well (last scans show continued stability and my oncologist appears to think this could last a while on my current drug treatment), I still get fatigued much more quickly than I used to.  This is particularly frustrating to me, but is part of my reality.

At any rate, it's good, good news.  And Mel is planning to use her unused airline tickets to instead visit a friend here in the US over the holidays and stop for a couple of days with us on her way back.  For her, it will be hockey season so we are already planning to take her to a hockey game.  She is hoping for snow while she is here, as where she lives that isn't something they experience.  I hope we have a little, just for her, and then it can disappear for the rest of the winter.  Snow... I do not love shoveling it, I do not love driving in it, I do not love dressing for it.  However, since I love where we live and the fact that we have so much family close by, I'll stay.

More updates to come, and photos too!