Days 39 – 46: Wow, What a Ride

For as long as I can remember, I have been a fan of roller coasters.  There is something insanely scary and simultaneously thrilling about the rush one gets when propelled at speeds up to 130 MPH, while pulling multiple negative g’s that just…well…makes me smile.  🙂

This past September, I had an opportunity to crew for a friend in the Albacore Internationals, a sailing competition held in Toronto, Canada for the Albacore boat class (http://albacore.org/).  It was the most physically demanding week of my life.  Seven days of hard sailing, at least for me as a relatively newbie sailor.  Sailing ended Friday and I flew home Saturday morning, looking like I had gone a few rounds with Mike Tyson.  My bruises had bruises, and it literally took 6 weeks for the swelling to go down in my fingers.  I don’t think I wore rings for two months.  And I had the time of my life.

I had been trying to get to Six Flags Great Adventure all Summer.  My last opportunity was that day after coming home from Toronto.  I *really* was on the fence about going because I was so sore from sailing, but in the end . . . my love of roller coasters won out.  As it turns out, it was a perfect day to go.  There was a threat of light rain, and the skies were overcast.  Translation… no lines.  We were able to walk up to every ride and get on within one or two cycles.  It was awesome.  We rode every coaster in the park, and the wood coaster twice.  The entire time I was screaming, crying, laughing, cursing my idiocy at putting my body through this and thinking oh my goodness what the hell is wrong with my brain I am surely going to die and WOW that rocked can we do it again?!?  In short, fantastic fun.

Infection . . . again

This past week (week 7 in the hospital) was very much like those roller coasters.  Last weekend I spiked yet another fever of unknown origin, and felt like garbage.  Just like the last chemo cycle, my white blood cell count had just started to creep up, and then bam…back even lower than before.  The doctors did the usual cultures, and it was ultimately determined that I was gram positive for a variety of strep.  Not a common variety, one that is usually found in the stomach.  Leave it to me to get some weird, uncommon bacteria!  This one was a doozie, and I lived on lemon sherbet for literally 5 days.  I could not swallow anything else.  They started me on antibiotics to target the specific infection, and I was able to find relief within a few days.

And a new problem . . .

Had a tough day on Monday.  A catscan was done to check on throat/neck pain I’d been experiencing, and it revealed that I had a blood clot in my neck, just above where the catheter was inserted in my left jugular.  I have a genetic blood clotting disorder, so I already have a predisposition to clotting too much.  Unfortunately, because my platelets were too low, they could not start Heparin.  But the doctors decided it was best to pull the central line in light of both the infection and the clot. Between the clot, the fever, and some news from work, I was at the end of my limit.  The last seven weeks have been trying.  I thought sailing in Toronto pushed my body hard, that was nothing.  This was the bottom of my current roller coaster ride and I could not take one more setback/complication/frustration.  I spent the rest of Monday crying in my bed curled up into as tight a ball as I could make myself.

Tuesday: Busier than a usual workday!

Tuesday was day 14 post-chemo (second round).  I was scheduled to have my repeat bone marrow biopsy done, to see whether I was in remission or not.  When I woke up Tuesday morning, the nurse still had no idea when I was scheduled, neither did the doctors.  Around 8:20 am, she received a phone call saying that transport was on their way to pick me up.  I was REALLY happy to get it done and over with, but we had to get moving to get me ready.

I was wheeled downstairs to the OR holding area, and the doctor who would do the biopsy and the anesthesiologist came to review the procedure and introduce themselves.  They wheeled me into the OR at 8:55, prepped me, put me on the monitor, gave me oxygen, had me lay on my right side exposing my backside to the world (grrr) and at 9:05 the anesthesiologist said the magic words, “You’ll be getting sleepy now.”   I love those words.  It’s the only time I am out cold in a good sleep these days!  Next thing I know, my eyes are popping open, and I am being wheeled by the transport tech back to my room.  I asked him what time it was, and he said, “9:30.”  REALLY???  Wow that was fast.  9:35 I was back at my room, and 9:36 I was getting pain meds from my nurse, thank you very much.

I did not even have time to order breakfast (grrrr again), before the nurse received the call that special procedures wanted me downstairs to insert the new pic line in my arm that would replace the catheter in my neck.  They still would not remove the catheter from my neck until my platelets were at 50.  They were currently at 20.  So up comes transport, down goes Tammy, and I am introduced to yet a new procedure. I was nervous, truthfully.  Even though I had oxycodone flowing through my veins now to give relief from the pain from the marrow biopsy, I was scared to death of having a needle inserted in my arm, a wire threaded up that arm and then a catheter placed and the wire removed.  I remembered how painful the central line in my neck was the last time.  I could feel the wire tracing its way through my artery, cold and stabbing.  Whether it was the pain meds or the skill of the practitioner, that pic line was in before I could say boo.  I felt nothing.  YAY.  Finally, a procedure without pain.

I was wheeled back up to my room, the mattress on the stretcher continually falling off the end, and me with my freshly sore tushie trying to scootch it back up so I wouldn’t get unceremoniously dumped when coming to a halt.  I get to my room, mask off, and gingerly go over to the bed to lay down.

Wait, I’m pretty sure I’m not supposed to be bleeding from the insertion site.  And blood was pooling under the sterile dressing around the pic line and dripping down my arm.  Call the nurse, she comes in and for the next 2o minutes puts pressure on it to get the bleeding to stop. Keep in mind… newly inserted catheter in arm plus two stitches to hold it in place and a firm hand putting pressure on your arm directly on the site…. OW.  But I have to tell you, Nurse Anne is *amazing*.  Really, all the nurses in this unit are top notch.  But she is exceptional.  She walked me through everything, explained why and that it was not uncommon.  She was just frustrated that they would not let her transfuse me with platelets before I went downstairs.  That would have aided in the clotting.

It was not even 10:30 am yet.

Finally ate something (yay!) and Nurse Anne hung my platelets to transfuse.  Now we were in a race with the clock to get me to 50 on my platelet level before special procedures closed at 8PM so they could remove the central line in my neck.  Platelets finished, recheck on the levels . . . 35.  An improvement over 20, but still not the golden 50.  I also needed a unit of blood, as my hemoglobin was low.  So next went the blood.  That takes about 3 hours, I was just completely out of it by then.  Between the oxycodone and the required benadryl given before all transfusions, I was ready for a nap.  Nope.

The representative from the American Cancer Society came for my wig fitting.  I’ve sworn all along I wasn’t going to wear a wig.  But I cannot BEGIN to tell you how I felt when I put on the one I ultimately chose, and saw my old self staring back at me in the mirror.  I burst into tears (good grief, is all this crying ever going to stop!?!?).  It needs to be trimmed by someone who has experience in wigs (if any of you have any connections, email me please), but I will probably go for it.

Time for antiobiotics in the IV and the next round of platelets.  I have no idea which end is up by this point, my tushie is screaming at me to switch positions, and I’m getting more than a little cranky.  Next round of platelets done, but they only brought me to 44.  And there is no time to premedicate and administer a third round and do a count recheck before 8pm.  ARGH.  Catheter will have to wait until morning.  By now I just wanted the vile thing out of my neck.

Wednesday

Catheter out, I’m on the mend, levels holding and I’m just watching the clock . . . waiting for the results of the biopsy . . . is it Thursday yet?

Thursday: Results day

To say that I woke up pacing the floor would be an understatement.  The resident came in, Dr. K (whom I just adore, she is awesome), to do the pre-round exam, and told me they would have results during rounds after checking in with the pathologist.  Rounds are typically from 9am – 12pm or sometimes later.

More pacing the floor…. finally, at 11:45am they come in.  Dr. R said, “Well, you’re clean.”  I looked over at Dr. K for confirmation – because I swear I wasn’t sure exactly what this man was talking about.  She nodded with a big smile and said, “Congratulations!”  And they left the room.

I had a million questions racing through my head, which was already spinning and I’m sitting there not knowing whether to laugh or cry so I did the girly thing and cried again and geez I have to catch my breath.  Remission.  The sweetest word in the world to me right at that moment.  The rest of the day was spent calling those in my family, texting my closest friends, emailing everyone, and posting on Facebook.  😉  I had a hard time keeping up with all of the responses and finally just had to give up!   Got to celebrate with a visit from mom who was beside herself excited [to my guys in IT…I’m sorry if she broke your eardrums when giving you the news ;)], and a hand-delivered pizza that hit the spot!!

What a victory.  Now . . . the hard part . . . waiting for my counts to rebound before I get to go home.

Week seven comes to a close

Friday was a catch up day.  I needed platelets again, and I was just bone tired.  The last few days of activity had me ready for a good nap by noon.  I welcomed the pre-transfusion benadryl, and tried to take a nap.  Not ultimately successful, but at least had a chance to rest.  The highlight of the day was getting to see my two boys, and tell them that mommy would be coming home soon.  What a joy!!  Of course, there is much to be done now to get the house ready to welcome an immune-compromised patient home.  It will be a busy week for sure.

And today, Saturday, has been much of the same.  My counts are still low, and have not started to rise yet.  I’m still symptomatic and tired.  But gently, quietly counting my blessings, thanking God for watching over me and grateful for my many friends and family members that have supported me these last 50 days (50 days in the hospital, that is!).

So, what next?

The question of the hour!   Getting to remission is just stage one of a four stage process.  Stage two is the road to stem cell/bone marrow transplant.  The doctors wait for my white blood cell count to reach a specific level, and then I am released to go home.  I will still be immune-compromised, so will need to wear a mask in public places, and be careful to stay away from those who are sick.  It will take time for all of my blood counts to return to normal levels.

During that time, my coordinator at the Cancer Institute will be searching for a donor match in the national database.  Once a match is found, that donor has to agree and then go through testing  to make sure they are safe to donate.  Once they are cleared, I will be brought back to the Cancer Institute to be prepped for transfusion.  The goal during stage two is to keep me in remission for transplant.  It is possible that I might come out of remission and require consolidation chemo to get me back there.  It can be a long wait, or very short – all depends on the donor.  I’m told that I should have no trouble finding a good match, so fingers crossed there.

Stage three is transplant and recovery, about a month-long or so process in the hospital again, as long as there are no complications.  I will be on special medication for 2-3 years post-transplant to prevent graft vs. host disease.  And then stage four is the best part… being cured and getting to live the rest of my life . . . knocking things off my ever-growing bucket list.  Hey!  I’ve had a lot of time to think and add to it over the last seven weeks!  😀

While the last week has been a roller coaster for sure, it is just the beginning really.  It’s a darn good thing I like thrill rides.  I’m still wondering what in the world I’m doing and wishing I could stop and get off . . . but I’m on for the remainder of the ride.  Is there a safety harness on this thing?

**How can you help?  Many people have asked me this over the last 7 weeks.  The main thing is to sign up to become a bone marrow donor.  Please consider this incredible opportunity to save someone’s life.  It may or may not be mine, but there are people waiting for transplants that are getting sicker and sicker.  There are two opportunities coming up in the local NJ area this week and next week to sign up.  It is through a simple cheek swab (you do it yourself) and signing a form.  If you are ever selected as a match, you have the first right of refusal as well.    Here are the details:

1.  This Sunday, April 22 (tomorrow), free testing is being held in Marlboro as part of the Stomp the Monster 5K.  The website doesn’t have much information but a reliable source tells me the testing will take place.  For info about the race, check out: http://www.stompthemonster.org/Event_5KRun.html

2.  Testing will be done in Montgomery Township as part of the Sunday, April 29 “Run With Rotary 5K and 1 Mile Ramble.”  From filling in the forms to swabbing your own cheek with a Q-tip takes about 20 minutes.  Testing is available from 8 am to 12 noon.  The Run with Rotary website (http://www.runwithrotary.org/) has information on their Home Page (on the right) and links to exactly what the nationwide registry is all about and how your donation, if you are a good match, is usually done without any major discomfort or disruption to your life. The wife of the Run With Rotary’s director needs a transplant as well, and information about Mrs. Hyncik is on the website.  Note that all potential donors will have their information put in the national registry for all potential matches.  There is absolutely no cost to be tested or to donate.  None.

Some additional information can be found here:  http://www.bethematch.org

So, where is my iPod stopping lately?  Today you get two songs.  One of my all-time favorite artists and songs – and part of my celebration on Thursday, and one that I just could not resist:

Desert Rose, Sting

Crank up the speakers and I DARE you to sit down during this one:

Walking on Sunshine, Katrina & the Waves