Day +360: The Power of Letting Go

The last three and a half months have been a roller coaster of events, emotions, health challenges, and breakthroughs.  Early on in my diagnosis, someone told me that my cancer journey would be more mental than physical.  Truer words were never spoken.

April: Going Up

The beginning of April found me in a very good place.  My promotion was (FINALLY) official, and I was taken off of the Prednisone, the graft vs. host disease (GVHD) having resolved itself with the high-dose steroid therapy.  I was 20 pounds heavier, but even the facial and truncal swelling – a side effect from the steroid – was beginning to subside.  My boys celebrated their ninth birthday, and I had a blast (quite literally) joining them and all of their friends in laser tag.  My favorite quote from that day was when one of the boys’ friends said, “Aww, man!  His mom got me AGAIN!”.  Yeah, I was the “cool” mom that day, laughing hysterically with the kids. 😉  A little different than last year, when we celebrated in a hospital conference room with just immediate family and one of the boys’ teachers and her husband (who are family to us!).

My defensive walls were starting to come down, and I felt as if I was truly on the other side of this disease.  I could breathe… the tension and fear were slowly going away, and my trust was beginning to return.  I was even (gasp!) starting to get out and walk and jog a bit.    During the second week of April, I flew to my company’s corporate headquarters in Indianapolis, for two weeks of intensive training and shadowing for my new job role.  I brought my sneakers along, looking forward to exploring downtown Indy in my beloved running sneaks.

For some reason, Plan A never seems to go my way.  On my second day out there, I developed severe swelling in my legs, ankles, and feet.  It was all I could do to get back to my hotel room each evening so I could kick off my shoes and elevate my feet.  I tried compression socks, Benadryl, a diuretic,  just about everything.  I chalked it up to all of the walking I was doing out there – the corporate campus is enormous.  During my second week there, I received the news that my boss was diagnosed with advanced stage cancer.  The news just about leveled me.  Dumbfounded, I remember hanging up the phone and thinking, what are the odds that both of us would be diagnosed with cancer within a year?  I rearranged my schedule and flew home the next day.

The remainder of that week was a blur of taking on projects that he was in the middle of and compartmentalizing my own issues and emotions so that I could be as positive and supportive as possible.  It was and still is, very surreal going from patient to supporter so soon.  That weekend, I noticed that I was not feeling quite myself.  My breathing was a bit labored, and the swelling had not gone down in my legs yet.  I called my oncologist and was told that if my pain and swelling got worse, I would need to go to the ER.  You guessed it.  Monday I ended up in the ER and was diagnosed with a blood clot in my femoral vein.  That netted me a few days in the hospital for IV heparin, and I’m now on blood thinners for life.

May: What Goes Up, Must Come Down

And boy… did I come down.  May might just have been the worst month.  I was deep in the throes of depression again, was dealing with challenges at work related to my job transition, home life was stressful, and then… the graft vs. host returned, requiring me to go on the high dose prednisone again.  I was struggling to balance the emotions of all that surrounded me.  To be quite candid, I did not handle any of that well.  Normally a cheerful, positive person, I remember my oncologist saying at one of my visits, “You look all deflated.  What’s wrong with you?”  And I didn’t have the words to articulate it all to him.  I just simply had nothing in the reserve tank.  I couldn’t sleep without taking the prescription sleeping aids, my mind was constantly in a fog, and I just wanted to run away from it all.  My self-esteem was non-existent, and I wanted nothing more than to shut the world out and flee to the nearest abandoned island.

And then May 17th came.  Without going into details, I will simply say it was the worst day of my professional career.  I left the office wanting to quit my job and never return.  And when I got home, my family bore the brunt of my frustration.  I’m not proud of that at all.  The next morning I had the worst argument I had ever had with my husband in our 20-year marriage and, by the end of Saturday, I was ready to call it quits there, as well.  What in the world was going on with me?

During the remainder of that weekend, I did a lot of soul-searching.  And I came to the conclusion that I could either continue on the path I was on, or I could dig my heels in, make myself vulnerable, and try and change my behavior.  I can’t change the people around me, but I can certainly change myself.  It sounds cliché, but I turned a corner that day.  The next morning (Monday), I attended the orientation session for the Dale Carnegie Leadership Immersion Seminar I was to be attending in June.  It was a half-day program, and I really did not want to go.  The last thing I wanted to do was think about how to be better at my job after the way it ended on Friday.  But once I was in class, there was absolutely no way that I could avoid looking in the mirror.

My life hasn’t been the same since.

June: The New Journey Begins

Dale Carnegie Training is not a miracle cure.  That said, the principles taught in his Golden Book are life-changing – if you open your mind and heart to change.  Again, I had nothing to lose.  So, being the girl that I am, I dove in with both feet and didn’t look back.  I embraced the training and applied it to my relationships at work and at home.  Within a week, my kids and my husband noticed a difference.  Hell, *I* noticed a difference.  All from simply putting principle #1 into practice: Do not criticize, condemn, or complain.  Do you people know how hard that is!!?!?  LOL!  Actually, it’s a lot of fun when you get down to it.  It is all about thinking about the other person.  How do I want people to feel when I leave a conversation?  How do I want to feel when I leave a conversation?  How do I want to feel when faced with challenging moments?  Do I want to blow up and get angry?  Or, do I want to try to understand the situation and think about how I want the next few moments to go before I react?  Anyway, I’ll get off my Dale Carnegie soapbox (for now ;)), but if you are interested in knowing more, definitely go to their website http://www.dalecarnegie.com.  They offer free webinars and trial sessions all the time.

Armed with all of this new-found learning, I found that the stress level in my life had dropped to a barely noticeable level.  I was still facing many of the same challenges, but was able to accept them, rather than react emotionally.  At work, I’ve been given the opportunity to work one-on-one with an executive leadership coach to help me develop into a management role.  I met with my coach in mid-June for the first time, and it is a perfect continuation of the Dale Carnegie program.  I’m really excited about my career and my future possibilities.  On a side note, the week after my training concluded, I sat for – and PASSED! – my certification exam for associate project manager (CAPM).  The week after that was my summer break from classes, as they resumed July 1st.  The remainder of the month was spent enjoying really good quality time with my kids, reconnecting with my husband and partner of 20 years, and yes… dealing with the side effects of the Prednisone withdrawal again.  🙂  Hey… life can’t be all peaches and roses!

July: Testing, Testing, 1…2…3…

Okay, you might have to sit down for this one, if you aren’t already.  I know this will come as a shock to many of you, and I don’t want you to be unprepared…  I’m not perfect.  Yeah, I know, hard to believe, right?  Even my name (Tammy) in Hebrew means “perfection” (thanks mom…), but none of us is… or ever can be.  And this month has brought a series of events into my life that have tested that June euphoria.

The last Friday in June (before the holiday weekend), I woke up feeling a bit more tired than usual.  As the morning progressed, I could barely keep my body upright at the office.  I went home early and went to bed.  And I did not get out of bed for five days.  The level of weakness I experienced was equivalent to what I had when I was undergoing chemotherapy a year ago.  I had a low-grade fever, but no other symptoms.  Just intense, severe fatigue.  I had no choice but to give in to it, and rest.  And then, as mysteriously as it arrived, it went away.  I woke up on the 4th of July, with more energy than I’d had in ages.  I cooked, cleaned, went target shooting with some friends from work, and came home just fine.

And then last week…

Okay, there’s a little back history to fill you in on here.  My car’s lease (2010 Jetta that I LOVED LOVED LOVED) was up in May.  I had all intentions of buying out the car.  Until that is, my husband leased a new 2013 VW Tiguan.  When I went to the dealer to complete the paperwork for the Jetta buyout, my sales guy (who has known me for years) took one look at me and said, “What do you really want?”  Argh.  So I told him.  I wanted a celebration car.  Something fun to drive… fast… spunky… with all the bells, whistles, and gadgets.  And it HAS to be a manual.  That was my only regret with my Jetta.  Next thing I know, I have a new lease on a 2013 GLI Autobahn.  Turbo.  6-Speed Manual.  And it is my “I survived Leukemia and I want to have FUN when I drive” car.  Now, those of you who know me, know that I sail (when I’m well enough and the oncologist lets me, that is…).  I had a trailer hitch installed by U-Haul on my old Jetta.  Turns out, the new VW takes the exact same hitch.  Easy peasy.  Had them take off the hitch before I turned in the old car, told them to save all the parts, and made an appointment on June 12th to have them reinstall it on the new car.  I get there on June 12th, long story short: they didn’t return the bolts with the hitch.  ARGH.  No worries, the guy can order them and have them there by the following Wednesday.  So, I call on Wednesday.  No bolts.  FedEx lost the package and can’t find it (Really?!?!?  I have a hard time believing that one…).  They will continue to call and track it, and it should be there by Friday.  They KNOW I have to trailer a boat that Saturday (June 22nd), so make an appointment for me in the morning.  7am Friday morning I get a phone call.  The part isn’t there.  OMG.  I wanted to scream.  But I didn’t.  I just had to figure out how in the world I was going to get this boat on Saturday.  By the way, this was the day before my certification exam.  I did not need the extra headache!!  Thankfully, my dear friend and co-worker has a hitch for his bike on the back of his car, and he knows how to drive a stick.  He graciously offered to switch cars for Saturday, so that I could go and take my exam, and pick up the boat after.

I have been calling UHaul for the last three weeks, and they will not answer the phone or call me back.  I’ve left messages with customer service, and they can’t even get through to the center.  At this point, I refuse to go anywhere else because of the principle of the thing.  And, because it is a UHaul hitch, I had to have it done by them.  Back history done.  Fast forward to last week.

Monday:

Finally, Monday morning, my husband finds the email address for the CEO of UHaul and sends him an email outlining my experience.  The shocker came when he got a phone call on Tuesday from the head of UHaul Hitches, telling him that I would receive a phone call from the center within an hour.  He gave my husband his personal cell phone number and told him to call if I experienced ANY problems at all.

Tuesday:

I got the phone call from UHaul, and they made an appointment for me for the next day, Wednesday, at 1:00 to have my hitch installed.  I’m skeptical, but hey, I have the cell phone number of the head of UHaul Hitches as my insurance policy.  Speaking of insurance policies…

I had my regular checkup with my oncologist on Tuesday afternoon.  Now, the majority of this post hasn’t given you much of an update on where I am in my recovery/treatment/whatever.  So, here it is.  I’m in a prednisone taper, I’m now at 30 mg per day, down from 100 mg per day, at the highest dose.  The next step is photopheresis.  I cannot go on high-dose Prednisone again, because of the risk of bone damage (plus, I am being driven insane by the side effects).  Photopheresis is really my only alternative to fighting the graft vs. host disease.  What is it?  Think dialysis, in a way.  Or for those of you who donate platelets, this is a similar process.  I have two IV lines, a substantial amount of blood is drawn from one, my white blood cells and platelets (also called “Buffy Coat”) are separated and collected into a bag, treated with a chemical to boost immunity, exposed to ultraviolet light to activate the chemical, and then infused through the other line back into my body.  The process takes about three hours each time.  My therapy protocol will be 2-3 times per week for the first few weeks, then 1-2 times per week for the next few months, then once a month for the next year.  A little bit of a pain as far as juggling work, home, treatment, and school, but… it is what it is.  I also received the first of my one-year vaccinations (remember that I have to receive all of my childhood vaccinations all over again, as the transplant wiped out their effectiveness), and was scheduled for my one-year bone marrow biopsy for next week.

So, appointments are done, I get my parking ticket validated, and go downstairs to pay my fee and get my car.  The guy at the counter takes my money and tells me my car is right outside and he will meet me out there with the key.  Okay, no big deal.  Only, when I get out there, he begins to apologize profoundly and tells me that there was an accident with my car while I was upstairs getting treatment.  Apparently, and this sounds a bit off, he went to move the car forward to go take it to the garage, took the parking brake off, and was looking down at the ticket in his hand and not paying attention.  Yes, he actually said that.  According to him, before he could react, the car started to roll forward and hit a parked car in front of him in the driveway.  I asked him why the car wasn’t in gear, and he said he must have forgotten to leave it in gear.  He just had the emergency brake on.  GRRRRRRRR.  You NEVER leave a stick shift in neutral.  ALWAYS leave it in gear – for that very reason!!!   Anyway, the bottom line is that I need a new hood, new driver side headlamp, new grill, and the bumper needs to be buffed and painted.  There might be more, but we won’t know until the shop opens the hood.  It’s too damaged to open now, as it will likely not stay closed.  And, the kicker?  Well, actually there are two.  The first is that the kid who crashed my car took my money for parking before telling me about the accident.  Can you believe it?!?!  Got my money back on that one.  The second is that the valet service is run by the New Brunswick Parking Authority.  They are covered under Title 59, which means that my insurance company cannot go after them for reimbursement of the claim.  The most they are responsible for is my $1000 deductible.  And I have to wait weeks for them to get that to me.  Tuesday was not my favorite day.  And did I mention that I had picked Tuesday to start a new diet plan?  I was good until I got home . . .

Wednesday:

Okay, today is a new day, right?  Time to refocus, I had an assignment to get done for my boss and a lot to catch up on.  Re-started the diet, and was already feeling a little better.  Got through my meetings, got the project done for the boss, and left a little early for my appointment at UHaul.  Got there at 12:30, and waited behind two other people for my turn to check in.  While I was waiting, another guy came in but went into the back room, talked to someone, then came in and sat down right next to the front desk.  I figured he was a sales rep or something.  So, I settled in and logged in to my work laptop to get some work done.  An hour rolls by.  I ask about my car.  They say, oh, we just have to finish up the hitch for this other guy (pointing to the person I thought was a sales rep).  Huh?!?!  But he came in AFTER I did!!!  Turns out, he knew someone there, and so they took him first.  Yeah, I’m a bit steamed at this point.  I text Bill.  Bill calls UHaul Hitches CEO.  CEO calls UHaul Center and screams.  It is now 2:00.  They are just getting my car on the lift.  I continue working.  4:00 rolls around.  I ask about my car (two hours to put a hitch on!??!), and the kid at the counter tells me that they are just working on the wiring now.  4:30…. I ask again…. turns out there is a problem with the wiring and the regional manager is personally working on it (I chuckle inwardly), and I should have an answer any minute.  5:00.  I have been at the UHaul center for four and a half hours.  Thank God for wifi and VPN, so I don’t lose work time.  But I was losing patience.  And I was really really trying not to.  (Dale Carnegie, Dale Carnegie, Dale Carnegie….)

Finally, the kid comes out and tells me that there was a defect in the electrical box that came in the wiring kit.  They’ve only had this happen once before in all the years they’ve been doing hitches.  Yeah, of course, it’s gonna happen to me.  LMAO.  Okay, no I really wasn’t laughing.  So the hitch is on, but I have to COME BACK TO HAVE IT WIRED.  He promises they will call when the part comes in.  I look him in the eye, and say, “Do you promise?”  Poor kid.  I think I scared him a little.  BUT… UHaul absorbed the cost of the installation, and they put a brand new hitch on, rather than reusing the one I gave them from the old Jetta.  So, nothing out of my pocket.  And I still have the cell phone number of the head of UHaul Hitches…. 😀

Thursday:

I get to work early, needing to prep for a Friday meeting, and clear a number of small things off of my desk.  I block off the day for focused work time, but end up staring at the wall half the day.  I’m beginning to get that overwhelmed, I can’t take it anymore feeling again…  I get through the day, meet with the insurance appraiser, get the estimate to fix my car and go to a Pampered Chef party at the home of one of my newest friends.  I have to tell you, I wasn’t in the mood, and I still had to go home to complete an essay for my Science class that was due at midnight.  But…. I LOVE Pampered Chef…. and there was going to be wine…  I had such a great night, it was just what the doctor ordered.  Managed to get my essay done in time, and fell asleep, exhausted, at 12:30 am.

Friday:

Had my first “Network Build” scheduled for Friday morning (I’m managing my first solo project that involves resources outside my department, and a network build is the task planning and resource allocation portion of the planning stage), so planned to get to work early to get my head in the game and prep for that.  On my way into the office, I get a message from my oncologist’s office.  My immune system counts have tanked, and I need to go in for an IVIG (IV Immune Globulin infusion) next week.  Well, that explains the five days of fatigue in bed . . .  BUT, that was the straw that broke this poor camel’s back.  I got to work, made myself an iced coffee, walked into my boss’ office for my weekly one-on-one meeting, and burst into tears.

Not exactly the composed professional image I was going for…  Thankfully, he is very understanding.  He listened to me, and told me to reschedule the network build and go home and take care of my body.  Do not pass go, do not collect $200 (his exact words), just go home.  I obviously was in need of rest.  For once, I listened.  Well, sort of.

On my way home, I stopped at my favorite deli along the way to get a pastrami on rye (yeah, the diet was out the window by this point this week), then went to the grocery store to get a few things I knew we needed.  I usually go into the store with a detailed list, sorted by aisle when I go shopping.  This was one of those times when I wandered up and down every aisle, trying to remember just what the hell I walked in to buy.   The contents of my cart when I got to the checkout?  A bag of charcoal (??), Armor All protectant for the interior of my car (??), Organic Skim Milk, Organic Popcorn, Organic Tortillas and Mozzarella Cheese (what I went in there to buy, I think), Organic multigrain flake cereal, graham cracker crumbs and marshmallows (to make these cool s’more mini cups with my son who loves s’mores), Diet Pepsi, Oreos, and rainbow sprinkles.  I intended to buy ice cream to go with the sprinkles… but forgot.  I was that out of it.

Got home and ended up climbing into bed, junk food in tow (don’t you DARE judge me!), and did nothing but catch up on the shows I had recorded over the last two months.  I think I remember getting up to cook dinner, but I know I didn’t eat it.  Three (or four?) glasses of sangria later . . . I fell asleep watching NCIS.

Which brings me to today.  I woke up, head a little foggy, but a lot less overwhelmed.  I worked in the kitchen, doing some reorganizing, baked up some chocolate chip cookies that I have been promising people for weeks, and then got to studying.  And, in the midst of it all, came to the realization that I just needed to let go of last week.  And last month.  And the month of May.  And the crappy part of April.  Aw, heck… just let go of it all while I’m at it.

Do you know what stress really is?  Stress is simply our response to the things that come into our lives.  It is my choice to either let it overwhwelm me, as I did last week, or get over it and move on.  The car will be taken care of.  It may take longer than I want, but there is nothing to be gained by allowing myself to be worked up over it.  The insurance claim process is underway, and it will be fixed in time.  The hitch will ultimately be installed, for now, I can’t do anything else to move the process along.  Why worry about it?  And, my immune system is compromised again.  No big deal.  We have a plan of treatment.  All I have to do is show up at the appointments.  Everything else will fall into place as it needs to.  The important thing – the most important thing, is to focus on my health.  Mental, spiritual, emotional, and physical.  Then my two boys.  Let tomorrow worry about itself.  I’m happier being at peace today.

And, with that, I can feel the sunshine beginning to creep in again…

Here Comes The Sun, The Beatles