This too shall pass….or not

I’ve had some good days in the last few months, starting to get out and about and even play some tennis!  It was not a winning season, but I didn’t expect it to be.  It was just fun to play.  I certainly felt how far my fitness had slipped.  My reaction time is a little slow, too.  But I believe it will come back.  But the last couple of weeks have been mostly good. But I get so frustrated at the ups and downs.

I had a UTI a couple of weeks ago, the lab work however came back as negative for any infection.  So I rolled along that week while the doctor pondered what could be causing my symptoms and I kept getting worse.  Finally I called him and headed to the Midtown ER.  Bob and I headed downtown on a beautiful Sunday afternoon and ran into complete grid lock in town as all roads around hospital were closed for the annual Atlanta Pride parade!  As we got a couple of blocks from the hospital at one point we considered dropping me off on the corner to walk to ER.  I could’ve joined the parade, or more appropriately, the homeless that hang out around the hospital. (Thanks for that visual Patti!).  The way I looked, I would’ve fit in better with that group.  We circled for an hour before a road was opened that allowed us into the hospital.  So after 2 hours in the car with a raging UTI (ladies, you understand), I went into front door of ER, made a bee line for restroom only to see the ladies room closed/out of order.  I’m in a full panic now, I bolt into the men’s room for relief, but it was too late. (My apologies to housekeeping).  So now on top of being in pain, I’m humiliated.  I now officially look like a homeless person that walked in off the street.   Anyway, 10 HOURS LATER, we head home with antibiotics for UTI after all.  About 11:00 p.m. the ER doctor decided she wanted to do a CT scan suspecting intestinal blockage from the X-ray.  Oh no….not doing that.  I’ll let you know if I’m blocked and this isn’t one of those times, so home we went.

It’s a week later, UTI is cleared up but I am managing a blockage that started Thursday night.  I’m sticking with clear liquids and some full liquid, allowing fistula to do its work as a pressure relief valve.  I’ve been kind of miserable the last couple of weeks, I must say. The chemo pill side effects are not even worth noting in light of everything else.  It is worth noting, though, that my tumor marker continues to rise on these pills, so that is worrisome.

This blockage seemed a little more severe than a couple I managed before, so has me a little scared.  I’m better today, but I don’t yet feel safe.  Every time one of these happens, I can’t help but wonder if this is the one that can’t be resolved and I feel my time being very small again.  Just as I get comfortable and at some peace, something changes that reminds me that I can’t really exhale.  I’m told that I’m very strong.  Tenacious might be a better description.  I just hang on really tight.  I confess that I often need help to keep my strength up.  Of course, Bob is my first source of strength, even with his own fears. Pain management is important, pain is the enemy.  Another are anti-depressant and, as needed, anti-anxiety. I take that when I can’t get morbid thoughts out of my head, and it helps.  So I’m not super human strong, I just don’t want to leave yet and we all need help sometimes.

I’m often in awe of all that God has brought me through.  I know I haven’t done this alone.  Several years ago, early in my diagnosis and treatment, I learned a valuable lesson, I mean really integrated the lesson into my mind and heart.  I was driving to work one spring morning and was passing by a park.  As I inched along in traffic I took in all the people out jogging, walking, playing tennis and stuff.  “Don’t these people work?” I wondered with envy.  I honed in on one person in particular.  A woman about my age walking her dog and I thought “That must be nice, to be healthy and have time to walk your dog in the park on a weekday.”  Come on, we’ve all had these thoughts as we trudge through the work-day.  But I was struck with the thought that no matter what it may look like, most people carry some burden… financial, relationships, grief, health and any other number of problems.  Instead of being jealous of this woman, I wondered what her burden was.  Please understand that it did not comfort me that this woman may have problems of her own but it erased all jealousy I may have felt.  I realized that from the outside I look like my world is my oyster.  I put myself in her shoes and felt empathy for another human.  “You go girl.. walk on this spring morning, and find your joy”.  I’m reminded of this lesson everywhere I go and with everyone I meet.

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Taking a sick day

I officially retired on August 1st, although I had been out of work on disability for 2 years.  I had a nice retirement luncheon with many friends and it was beautiful and gave me positive closure to my career. I’m trying to figure out retirement along with my hubby.  So far, everyday is like a Saturday.  Slow morning start, a few chores and errands, then rest/nap/tv until time to cook dinner.  I’ve slowed down a lot.  Some of it is necessary and expected, but I fear some of it is also an excuse.  I know I need to find a couple of more activities to occupy my hands and brain.  But not today.  I don’t do this often, but I’m giving in to not feeling well and plan to spend the day in bed.  I’m cautious about how much time I “rest” in my bedroom.  Usually a couple of hours a day.  Sometimes I nap, sometimes I read and sometimes just enjoy the solitude.  But I make myself get up and come downstairs after no more than 2 hours.  I catch a few car shows or wicked tuna or other macho shows with my husband.  It worries me just a little that I took a day in bed. I slept for hours, though,  so maybe it was needed.  I seem to be battling a partial blockage.  I’ve learned the signs. This is not like an ER thing, but I need to back off to a liquid, soft diet and more liquid than food.  This has happened once before and the fistula goes into overtime taking the pressure from blockage.  That means I’m changing that thing every few hours!  Such a hassle, and definitely confined to home.  I think diet change and time will resolve it, hopefully soon.  Lesson learned though….no matter how bad I want that chicken enchilada, I should rethink it…it’s not worth it.  I don’t know if it was the enchilada.  I think maybe a combination of things I ate.  I had a reckless, indulgent day and now I’m paying the price.

I’ll pick up where I left off yesterday.  I did better today, still monitoring the diet, still not feeling too well.  This is when I get a little nervous, maybe not fully understanding what’s going on.  I finished my week of chemo pills on Wednesday.  I’m wondering when I’ll start feeling better, when the cancer shrinks back from my intestine and allows it to open up more.  I really need this chemo to work.  I don’t like being this slowed down. Bob and I are both afraid to travel thes days and that puts a damper on our retirement.  I’d like to feel confident that I could travel again.  I’m hoping maybe in a few more months.  Sometimes I have to work pretty hard to not feel sorry for myself.

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Summer of Surprises

For the third week now, I am settled in my recliner tethered to my TPN.  It’s a 16 hour infusion, most of which will occur over night.  I’m hooked up from 6:00 p.m. To 10:00 a.m..  I can move about the house with the backpack, but it’s cumbersome.  It’s almost dinner time for my husband.  I smell steak on the grill.  Yum.  Sometimes I sit at the table with him, but seeing and smelling the food I can’t have is a little torturous so I often stay in the den with a cup of green tea or broth.  It makes him feel bad too.  I’m really missing food!  I’m so lucky my husband is so self-sufficient.  He’s not a gourmet cook, but he can follow simple recipes and create tasty meals.  He’s also a grill master, so there’s that.

A short time after my surgery  and 10 day unplanned vacation extension spent in Sarasota General Hospital, I experienced something very foreign and alarming to me.  A fistula, from my intestine out through my tummy at the incision line.  I never dreamed of my intestine tunneling through my skin and opening.   A not uncommon surgical complication, I’m told.   I spent 5 days on TPN in the hospital to rest the intestines and it looked like it had healed over.  I came home on a soft diet but it opened right back up.  I then began managing it with an ostomy appliance.  What a nightmare that is!  A couple of weeks after that, a second fistula opened an inch or two above the original.  I went to the ER and back in the hospital.  Started TPN, no food or drink by mouth, came home with TPN  and I am allowed clear liquids.  The second fistula has healed over and the original looks like it’s trying to, but still open.  I’ve read that it can take 4 to 6 weeks on TPN for a fistula to heal. Ugh.  That’s a long time not to chew on something.  My weight is pretty low, but TPN is keeping my nutrition levels up.  Energy is a problem. I wonder sometimes if  I’m just getting lazy because I’ve been so sick and in and out of the hospital so often the last couple of months.  I don’t want this to be my new normal lifestyle.  I’ve gotten out around town a little but still feel like a bit of a shut-in.  In summary, I’ve had 2 abdominal surgeries followed by 2 more hospitalizations since March.  It has not been a good spring and summer.

I went to the Hobby Lobby today and stocked up on art supplies for my online drawing class I signed up for.  Now that I’m $100 in, I’d better start those classes!  I’m hoping to discover some deeply buried talent and a hobby to allow me to be quietly creative.  The idea came to me when I realized my old past-times of long, fast walks and tennis may be a ways off, if I ever can do those again.  I found myself wishing I could walk the 4 mile circuit of the local park and wishing I was playing competitive, or even bad, tennis.  I may get there, but for now just wishing is stupid, so it’s time to explore other hobby options.

These complications of my cancer I could’ve never dreamed of when I started this journey.  The ups and downs are extreme.  More than once now, I’ve believed that I was spiraling toward the end.  I’ve been told that, actually, by my surgeon who I’ve decided is a bit of an ass.  Then I seem to recover and feel like I still have fight in me and a chance to reclaim my life.  That’s where I am right now.  The TPN is temporary (as far as I’m concerned) and I will resume a relatively normal lifestyle soon.
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The hits keep coming

A lot has happened since my surgery in March.  I recovered well, or so I thought.  Eight weeks after surgery my husband and I took a much needed trip to one of our favorite locations, Longboat Key, just across the bay from Sarasota FL.    We spent almost six full days enjoying the sun and water.  I walked on the beach in the mornings taking in the peace and beauty, feeling so alive and optimistic.  But that was not to last.  On our last day, in the afternoon I became very ill and in terrible pain…blockage!  We rushed off to the ER at Sarasota General Hospital and I was operated on about midnight to clear blockage and repair a perforation.  It was a tough surgery and I spent a day in ICU before moving to the surgical care floor.  In the meantime, hubby had to pack the condo in the dead of night as we had to check-out the next morning.  What a fiasco!  I spent 10 truly miserable days in Sarasota General.  I was very sick, had e-coli in my abdomen, a nicked bladder and just a lot of pain.  I was on TPN (IV nutrition) with no food or water by mouth for eight days.  I was finally released on orders to stay on a liquid diet until I followed up with my surgeon at home.  Bob and I started our journey home, splitting the eight hour drive in two days.  I felt the most miserable I think I have ever felt.  I was home a week recovering very slowly when I began having a lot of pain to the right of my incision.  Of course it was a weekend and in fact a three day weekend, Memorial Day.  Monday afternoon my tummy opened up and began leaking…from intestine.  The next morning I was in my surgeon’s office and he put me in the hospital.  I had the dreaded fistula, a fairly common surgical complication especially when there have been multiple surgeries.  Apparently my bowel perforated again but this time tunneled to my skin and out.  That was actually lucky. The body does some weird and amazing things.  I was put on TPN, no food or drink again, in hopes of the fistula healing on it’s own.  Surgery was a last resort if even that.  Another big surgery to repair the fistula carried too much risk of doing me more harm than good.  After several days, it appeared that I was healing.  The leakage stopped and I advanced through clear liquids and full liquids and was released home only for the damn thing to open back up the first night home.

Oh jeez, I just need to shorten this story.  Under the care now of my oncologist for this and after a long discussion of my condition and desired quality of life, I will manage my naturally formed colostomy, not repair it and not go on TPN.  I will learn how to manage this hole in my body and continue to eat and live my life with some adjustment.  I think of it like a colostomy except mine is naturally formed instead of surgically formed.  That makes it different and a little harder to manage because it’s not placed or designed as well as if done surgically.  It is just what it is.  This is hard but I will adapt.  I also understand that this solution may have a timeline and not work forever, as a surgical colostomy might.  What it may do for me in the meantime though is work like a pressure release valve and protect me from another perforation anytime soon.  No promises, but maybe.

It has taken me a while to write this blog.  My head has not been in a good place and I was waiting for that to happen.  I think I am beginning to gain some perspective though.  It’s hard to put a cherry on top of this pile of poo, so I won’t even try.

I question again my motive for this blog.  My hope was inspiration for others and I still want it to be that.  I have changed, adapted and accepted things that I thought I never would.  I am now working on acceptance of my declining health as a result of cancer and want to live as lovingly and gracefully as possible.  I have terrible moments, but I try to come back to what is important.  I’ve had several tell me that it is all part of God’s plan.  I don’t think this is part of God’s plan, only because I don’t think he is orchestrating to this low a level.  I do believe he knows me and is with me through this, but he didn’t put this on me as part of a plan.  It is incumbent on me to look for my purpose in this life through all this and I’ve come to believe it is simply one of learning and growing.  I’ve grown up.  I’ve slowly let go  of the impossible ideal life with picket fence and happily ever after and “Bring home the bacon and fry it up in a pan and never let him forget he’s a man” (you remember that!) and know that it’s the impact that I have on others, especially those close to me, that is my purpose here.  I think I would still be chasing some Facebook worthy ideal of life if I were not walking this journey.

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In a New York Minute

Was my last post a premonition or did I mentally set myself up for a fall?  I’m afraid that putting into words some scary reality might have triggered what happened next.  Just five days after that post I ended up in the ER with what I self-diagnosed to be another bowel blockage.    That had me scared enough.  The CT scan revealed not just blockage but a perforation as well.  A double whammy.  My usual surgeon was called in and came to the ER late in the afternoon to deliver what was already devastating news in a devastating way.  Because of one of the anti-cancer biologic drugs I was on, healing from wound/surgeries is jeopardized.  The prognosis from the surgeon rolled off his tongue way too easily.  Without hesitation he told me my situation was catastrophic and with or without surgery I was terminal.  With surgery, I would not heal due to the biologic and will surely decline.  Without surgery, I would experience sepsis and surely decline.  He would give me and my husband overnight to decide if we wanted him to perform surgery.  He offered us no hope.  I got the distinct vibe that he did not want to perform surgery on me, that his attitude was ‘the old gal has had a good run.’  In a New York minute, everything changed.  My time had come.  This was a conversation I was not ready for, but at the same time not surprised by.  I know the risks of my medications.  I understand the risk of my cancer’s predisposition to hanging out on my intestines.  I asked my surgeon if he had talked with my oncologist; no, but he had consulted others.  I wish he had taken a few minutes to talk with Dr. R.   I had been in contact with my oncologist, Dr. R., from the ER keeping him posted and only at my hubby’s prompting did I email him to relay what my prognosis was.  Frankly, I was at a place that I couldn’t see how he could help.  But I was wrong.  He immediately called the surgeon and then later reported back to me that he did not see my situation as catastrophic.  My dosage of the biologic (Avastin) was 1/5th the normal dose…not given to do the heavy lifting, but to assist the partnered chemo drug.  The Avastin would be out of my system quickly.  It had been 5 days since infusion.  There was still risk, but there was also hope.  My decision leaning went from “Why have a big surgery if I will die an ugly death anyway?” to “I absolutely must have the surgery.”  In the few hours in between, I’m not sure how long as time stood still for us, my husband and I cried and prayed.  My two kids were called to come to the hospital to see me and to explain the risk I was facing.  We thought this was the beginning of the end…a miserable, painful end that I admittedly fear.

The next morning, the surgeon came to my room and asked what my decision was.  He never acknowledged that he spoke to my oncologist.  He never softened his initial prognosis.  I had the surgery.  I have healed and am recovering well.  I’ve started a new chemo regimen without Avastin that has a good running start from the results of yet another regimen abandoned.  I am one lucky girl.  In a New York minute, an email from my oncologist with a small but important piece of information changed everything again.

I admit that recovering from the reality of what almost-could-have-been is harder than the physical healing and for the first couple of weeks following surgery I was waiting for the other shoe to drop.  I often wonder why I am still here.  I feel so blessed to be, but also confused.  I know time and a return of normalcy will help with that, normalcy however, being a constantly moving target.

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Sometimes I Get Scared…

Most of the time I rock along feeling that I will be here a long time but any change to status quo is unsettling and often fear provoking.  I have been through more treatment change-ups than I can even count now and those shifts are unsettling, usually because of uncertainty of the side effects.  With as much and as frequent as my chemo treatments change there is a lack of side effect predictability.  I never seem to quite understand the rhythm of any given treatment and am left wondering “Is this a nasty, cumulative side effect, or am I getting sicker from cancer?”.  I’ve recently switched up and have had two cycles of a new regimen.  The first cycle was somewhat as expected, if not a bit worse than I had hoped, but they all are.  The second cycle seemed much worse, but it was also complicated by a UTI along with prescribed antibiotics for that.  I am out and out afraid of antibiotics – with good reason.  Two years ago while hospitalized I contracted C-Diff (clostridium difficile); a nasty little bugger.  It recurred quickly following each of two progressively aggressive rounds of antibiotics targeted specifically for C-Diff bacteria.  The statistics for future recurrence or chronic condition after two recurrences is quite high.  I consider myself lucky to have become symptom free after the third antibiotic round.  That said, it is safe to assume that I still carry the bacteria but it is kept in check by the good flora in my gut.  When asked what I could do to prevent a recurrence of C-Diff, the GI specialist I was seeing at the time said “Avoid taking antibiotics”.  Well, there you go and here is where broad spectrum antibiotics, such as those prescribed for a UTI, are a problem for me.  They destroy good gut bacteria allowing C-Diff to dominate the gut.  I cannot go back there again.  Anyone who has had C-Diff will probably readily agree that it is a very special kind of misery.  It is also quite dangerous, particularly if already battling a health issue. I seemed to be getting sicker each day following my second round of chemo and being especially sensitive to the C-Diff reality, I stopped the antibiotics after 3 days and began the probiotic Florastor which specifically targets wiping out C-Diff.  I began feeling better after a couple of days.  Has my UTI completely cleared?  Probably not and only time will tell.  I will cross that bridge when I get to it.

This is where fear and reality hit.  I may not look it and I mostly may not feel it, but I am fragile.  Complications of cancer covers a broad territory, but basically any health issue, even common infections, can spin things out of control.  I know this. I’ve seen this. This is not paranoia.  Suddenly then, I find myself thinking those dark thoughts of  what-if? and will-my-family-be-alright? and telling God that I-am-not-ready.  Ha! Then there’s the running list in my head of things that must be taken care of that I keep putting off.  That damn list.

I will have my third round of this chemo tomorrow and, without complicating it with antibiotics, this should give me an indication if C-Diff was at play or if the chemo is just rougher than expected.  I’m not even sure what I’m hoping for!

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“We are never owning a mini-van…” and other things that creep up on you

state-farm-never-large-6

I love that State Farm commercial that’s running on TV now.   It begins with a young man at a pool party with his buddies and he declares “I am never getting married” just before making eye-contact with a pretty girl.  Next scene, he’s buying an engagement ring.  It follows that he and his wife are in a plane with a crying baby behind them. “We are never having children” he says.  Next scene is in labor and delivery.  And so it goes with moving to the suburbs, having a second child and then the dreaded mini-van in the driveway.  The commercial ends sweetly with the man and his family together on the couch and him saying “I’m never letting go”.  He’s happily all-in and embracing a new reality, hook, line and sinker.

We all say at one time or another that circumstances and life changes won’t change us.  We all believe that we will be the same person we always were, with the sometime exception of conscious and deliberate growth to be a better us.  We try to look and behave as we did in our 20’s and 30’s, (hey 40’s would be good) for as long as possible but give it up before we look completely ridiculous.  We try to remain a regular Joe or Jane while working hard to climb a social and economic ladder.  But if we are honest, we do fundamentally change as life circumstances weigh in.  These evolutions of our selves are best shared with our spouses, siblings and friends.  We generally change in sync with those around us and it feels natural and can be fun and even enlightening.  We’re all in the same boat, and that is comforting.

There’s change that happens sometimes that is not in sync with the rest of our world and that can be uncomfortable and lonely.  Maybe you were the first of your couple friends to start a family.  For some time you felt odd-man out.  You had changed to parent mode, leaving the late night partying and weekend warrior activities behind for, well, parent stuff.  Same if you were the last to have babies.   You couldn’t find a single gal pal to hit the clubs with you or shop til you drop on a Saturday.  What were once easy conversations with your friends became more difficult because the threads of common interests weakened.  If you were the new Mom and Dad or the last no-kid couple of your friends social interactions became more like work.  The ease was gone.  You may have even left some friends behind to find new ones that were more relatable to your life’s changing experiences.

There are a lot of clichés applied to the fight of cancer.  “I have cancer, cancer does not have me”.  “Cancer can’t change who I am”.  “If I show weakness, the cancer wins”, etc.     These fight songs are really pretty helpful upon initial diagnosis and first-time treatment.  A patient can repeat them as mantra to keep their morale and spirits up for the “x” months of surgeries and treatment.  Chronic and recurrent disease is a little different and not as often recognized by the cancer kumbaya marketing campaigns.  Like the cute commercial, the first eventful change (boy meets girl) takes on it’s own momentum.  Just as the couple go through identity evolution over time, the chronic cancer patient does too.  It inevitably seeps into your identity.  I am a woman.  I am not good at compartmentalizing things so my disease is with me all the time.  (The implication here in case you missed it is that men are usually excellent at compartmentalizing…drives us ladies nuts).  Something that I live with and actually feel every day of my life has changed who I am.  I am a cancer survivor an a cancer patient in active treatment.  I am often consumed by my disease.  The doctor visits, the now daily chemo pills I take, the review of frequent PET scans and lab results and the growing arsenal of medications for side effect mitigation and pain control.  It’s like I’m the first of my friends to have a baby and my focus has shifted and is consumed by the new baby.  Even if I get a sitter and go out for the night, I’ll be calling to check in frequently and want to talk about my baby while my friends struggle with what to say because they can’t relate.

I guess you could say that I’m all-in to this reality but only reluctantly and resistant to accept hook, line and sinker.

Now that I’ve over-explained, what I want to say is that I appreciate all those around me that haven’t moved on to find more relatable companions.   I recognize that the ease of all my relationships is tested, as a wife, a Mom and a friend.   Being an introvert anyway makes retreat a too-easy option and I often struggle with letting myself turn too far inward.    It must take great love and patience to continue to reach out and I love and appreciate all my friends and family for their patience with me.

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