The day has finally come that I will have my Port-A-Cath placed in my chest.  While right now it sounds kind of dreadful, tomorrow's surgery will be a really good thing!

M and I will head over to Medical Short Stay tomorrow at 7 a.m. to check-in and have me prepped for what I am hoping is my last surgery.  

Over the past few weeks I have wished for this day to come so I can have this device placed because the past two treatments have KILLED my veins.  My left hand still hurts from where I had chemo two weeks ago! The Port-A-Cath is a device that will be placed under the skin that will facilitate the chemotherapy infusions.  Here is a little more information on the Port-A-Cath that I found online if you are interested in learning more.

I think the one downside to this is that I will have a small- to medium-sized scar on my chest which obviously is a concern for the far-off spring and summer dress season.  But hey, things can always be corrected, right? :)

I will keep you all posted with how I am feeling but this week will be relatively busy with surgery on Monday, Chemo on Tuesday and Neulasta shot on Wednesday. Hopefully I will be feeling spry enough to pay my dues at the 30% off Brooks Brothers sale or go see Fame with my mom.  I suppose only time will tell.

xoxo

T

Be Careful What You Wish For

To hell with anticipation.

It's funny how when you wish for something, you think you really want it to happen - but when it does, it hits you like a stack of bricks...

I was quoted last week saying "if my hair is going to fall out, I wish it would just go ahead and come out so I don't have to wonder when or how much..." Ahhh if only I could turn back the hands of time.

Let me start from the beginning - rewind to treatment last Tuesday: B and I are sitting at the clinic and I ran my hands through my then long and flowing hair and my fingers came back with a few stray hairs - nothing unusual right? WRONG. This was only the beginning. Wednesday rolls around and after two days of abusing the ponytail, it was time to wash, dry and style my hair that I have patiently grown after donating 13 inches to Locks of Love. A few brush-fulls and a bit of anxiety later, this exercise in usual grooming proved to be a bit more stressful.  It was official - the damn red drug, Adriamycin, had done its job, I was indeed losing my hair far quicker than anyone had expected.

In efforts to control this situation, I immediately called my hairdresser to cut my hair short thinking that shortening the length would all of a sudden thwart Project Fallout. All day Thursday I kept having to remind myself that the presence or length of my hair didn't define me, but I kept finding myself in this awkward mental position that I was allowing myself to feel crappy about something that, in the grand scheme of things, is so small. Come 10 a.m. Friday morning, I was sitting at my salon saying farewell to seven or more inches and walked out with a super cute bob.

Fast forward 30 hours and I experienced likely the most traumatic shower of my entire life as I was confronted with massive hair loss and as you girls can imagine - lots and lots of tears. After attempting to style my once-cute bob, I decided that B and I would spend our Saturday night shaving my head and drinking lots of champagne.

Now after all the emotion of losing my hair, it was time for a little fun - enter: B's Salon of Style and a $15.99 set of ConAir clippers. We turned on the Sinatra, drank quite a few glasses of champagne and went through a variety of really classy haircuts like a hackneyed layering job, a mullet, a partial fade and two different lengths of a GI Jane-style buzz.

We settled on the buzz cut that continues to shed but, hey, looking on the bright side, if the drugs are wreaking this kind of havoc on my hair, I shutter to think what it's doing to the tumor. Below you will find a few pictures for your viewing pleasure.

xoxo

T

 

Light the Night - October 15

As some of you may know The Leukemia and Lymphoma Society hosts an annual walk to raise money for research and patient care. In honor of my own affair with Hodgkins Lymphoma I have decided to walk and raise money for the event. I would like to thank Ally Pagar from Alpha Delta Pi for encouraging me to participate as part of the ADPi team and I look forward to walking with friends new and old.


Below are the event details:
Thursday, October 15, 2009
The Boston Common

Walk Distance: 2 miles
Check In: 5:00 p.m.
Opening Ceremony: 6:30 p.m.
Walk Start Time: 7:00 p.m.


I encourage any of you in the Boston area to come out and walk with me. Click here to view my fundraising page and from my page you can click on "Walk with Us" to signup to be a part of the team.  


I want to thank all of you for the support you have given me so far as we navigate through my new love affair and I would appreciate any time that you could spare to cheer me and the other survivors and their families on.


xoxo


T

Treatment Complete

Just wanted to touch base with everyone and let you know that today's treatment went very well. I am already experiencing the typical chemo side effects of mild nausea, fatigue and general tiredness.

B and I went into the clinic around 8:45 this morning and were out of there in record time - 11:45 a.m.! I must admit this was a huge shock and relief compared to the 5 p.m. two weeks ago.

The only real wrench in the plan that I did not expect was that my white blood cell counts were lower than they should be. My absolute neutrophil count in the white blood cells were at 950 and they want them above 1,000. It was safe to treat me today but SMD and D want to make sure I can stay on my treatment schedule so I have been inducted into the Neulasta club - I go into tomorrow for the shot.  Neulasta is a medication that will help jump start the production of white blood cells which in turn will make my lows not as low and the climb back to normal not as difficult

In addition to chemo and Neulasta tomorrow, I also got my second Lupron shot which I must say is much better in the legacy version of the syringe. The Lupron is my fertility hope at this point and I am just navigating the hot flashes!

Hope you are all well.

Love,

T

Peekaboo Monday

After a great day lounging gloriously on the 16th hole this past Monday, I (of course with my luck) started to experience some chest pain (!!) and shortness of breath. This according to Dr. S (S M.D. according to B) is a cardinal sin and is to not be tolerated. I obviously began the debate as to whether or not to even call the Hem/Oc fellow on call and finally decided that it would be in my best interest to do so.

Now, in my head this is how I thought the conversation would go when the fellow called me back:

me: I am having chest pain in X location

fellow: hmm, that sounds like blah blah blah

me: really, hmm that is so interesting. What should I do to make it stop hurting?

fellow: well, you should do xyz and then it will be all better and then you will get a good night's sleep

me: wow, that is so great, thanks for all of your help!

Yeah right. In my dreams, this is how it really went (in abbreviated version):

me: I am having chest pain in X location

fellow: hmm, are you having xyz symptoms?

me: no, not really

fellow: what is your pain level like?

me: well, I'm experiencing moderate pain - sitting still it is probably a 2 but with a deep inhale it is probably a 5 or 6

fellow: hmmmmmmm. I think you should come into the emergency room so we can run some tests on you, do a chest x-ray etc.

me: reeeally? (tinged with massive amounts of skepticism) There isn't another option?

fellow: No, there are no other options. I think you need to be examined, please go ahead and go over to the East Newton campus.

me: well grrrreat, thanks for all of your help.

So there I went, cousin in tow straight off the puddlejumper from ACK, trotting off to the emergency room. Oh lord, prepare yourself for the comedy/tragedy that ensued below.

Unlike emergency rooms that grace the lights of Seattle Grace or the lots in Hollywood, the "pit" at Boston Medical Center had one triage nurse that was trying to understand Chinese, undecipherable Spanish and overall disgruntled patient. After much waiting and trying to not contract the swine flu, I was finally seen and admitted into the ER, bay 4. At one point I became so worried for my health that I donned this really great mask - what you can't tell is that I am smiling really big!

Apparently I was right in the middle of the action area for the ER on Monday night: bay 3, the space next to me, saw three patients during my four-plus hour stay in the hospital, two of which kept having strokes and were then admitted! 

So while bay 3 was getting lots of action, bay 4 did lots and lots of waiting. I went for a chest x-ray, waited about an hour or so, gave the hospital seven or more viles of blood plus two syringes which to-date takes my total of blood sent through the labs at BMC to approximately 45, waited for another two hours and then thankfully avoided CT scan number three. 

All the while, B made the hand sanitizer dispenser his new best friend as he was at it every 5 to 7 minutes and Cousin J tried to avoid human contact with anything hospital related including the bathroom which she deemed were close to Kabul-like conditions.

While actually in the hospital they were never able to really figure out why I was having so much chest pain (this has since come to light, read more below) the SILVER LINING to the whole emergency fiasco was that I was actually able to see my updated chest x-ray AND (drum roll please) there has already been a visible reduction by maybe 30% of my tumor!!!

I can't even express to you how incredible it felt to see the results of my first chemo treatment. After ONE treatment, you could clearly see a reduction in the size of the mass which is why I was experiencing chest pain. Parts of my lung are now able to expand that didn't used to be able to and it is tiring the muscle - hence the pain.

After one very very long day I was finally discharged after all of my labs came back clean and I couldn't have been happier. I must admit, I never thought I would have been so pleased walking out of the emergency room...

PS: for your viewing pleasure, the infamous bay 4 with me and a much needed slice of pizza that arrived at around 10 p.m. Nurse Hope and Kristen, my emergency resident were both very jealous!

Surprises at Every Corner

Yesterday was a great day. For the first time in weeks I felt like a relatively normal 24 year old! You have no idea how gratifying it feels to have a life minus the nausea plus the fun. B and I began the day like any other weekend day: coffee/tea on the deck, breakfast, chatting and the morning paper and then we were headed for the 16th hole, lots of good food and great company.

After forgetting our passes to the tournament, returning to the house, driving to Norton, fighting Labor Day traffic, fighting the ensuing nausea, dealing with quite a few disgruntled teenagers-turned-event-security personnel, we finally arrived at the tent to a sea of very warm, smiling faces from work! While I have had the good fortune to attend the tournament as a spectator, my friends are not nearly as lucky; however, I attempt to provide as much PG entertainment as possible to keep things interesting.

While I was prepared to be their entertainment, they had something different in mind for me: here I am, unassumingly sitting on the patio eating my delicious lunch and this very tall, muscular man is headed my way. My first reaction is move out of the way and try not to ruffle his feathers. Much to my surprise he was coming to see me! After initial introductions, I find myself talking to three-time Super Bowl champion lineman and cancer survivor Joe Andruzzi. 

Joe, who has since beat a very rare form of lymphoma, shared with me his spectacular story and I had the unique opportunity of meeting his stunning wife Jen. Hearing their story, learning of both their strength to get through every day just to know you might have to go through the same crap the next and having the reassurance that all of the emotions I have been having were all completely normal was such a breath of fresh air. It was also amazing to learn that Joe is very involved in helping others. You can read more about he and Jen's foundation here: http://joeandruzzifoundation.blogspot.com/.

After meeting the both of them, I was on such an unexpected emotional high - I would have never thought that my celebrity interaction would have been so up-close-and-personal, I was purely expecting it to be limited to a Tiger siting. Oh, but this was so much better...

A mid-weekend update

Hello all-

Not too much to report as things have slowed down here a bit due to the holiday and the general sense of nausea that now covers my life.

Ooooh actually, I do have three things of good news:

1. the PET/CT showed no cancer below the diaphragm (super awesome news)
2. the dreaded bone marrow biopsy came back negative for cancer (even better news, I guess it was all totally worth it)
3. my labs from this week showed that my body is stabilizing itself well enough to the chemo and isn't flooding my system with more than it can process

In other news, M left today which is a bit bittersweet, one part sad because that means I have one less person to take care of me :) (which I apparently need a lot of these days) and the other part glad because that means she is comfortable enough that I can semi-handle this thing by myself.

The past few days I have been back on the roller coaster: how foolish of me to think that the ride was over! Each day has its ups and downs: I feel great and am ready to go out for the day and then all of a sudden I get smacked upside the head with utter exhaustion! For the past few days, I keep asking myself, HOW AM I GOING TO LIVE MY LIFE WITH THIS STUPID TUMOR!

B said to me today something very wise, "T, you have to stop looking at this as if it's a sprint. This is a marathon where things will come and go everyday and each day will have its ups and downs." I think I have to keep reminding myself of this because trying to fight the battle day to day is exhausting - especially when you're not sleeping at night!!

Not much else to report, B is making a mean looking pecan snapper for dinner so I am going to sign off.

xoxox

T

Bone Marrow and Chemo oh my!

As I'm sure most of you have been wondering -  I did survive cycle one-a and to date the worst thing I have ever done to or allowed my body be put through EVER.  Oh how naive I was on Monday when I came out of the PET/CT thinking that drinking that goo-like imitation pina colada would be the worst of my troubles.

To date, in my 24 years of existence on this earth I have never encountered anything so painful as a bone marrow biopsy. And then to boot, after the bone marrow biopsy, they then proceeded to give me my first treatment.

Before I get into to all the details, my nursing staff at Moakley 3, Nurse N and D have been such absolute super stars. N is amazing at what she does and so every conveniently placed me next to her station in case of any emergency - very smart woman. Also, to very much my pleasure, N was on the IV team for 10 years so knows how to deal with poor, thinning, collapsing veins like mine.

D, is a young, bubbly and very astute Hematology Nurse Practitioner that takes amazing bedside manner to a whole other level.  She is warm, kind and caring, everything you can ever really hope for when you are confronted with this kind of scenario head on.

So my day started very early on Monday morning at about 8:30 a.m. Mom and I moseyed over to the Moakley building and then the waiting began. I waited for a while and then was finally taken back into the clinic where Nancy put in IV number 1, took blood and sent everything over to the lab for running. During this waiting period, doctors came in and out to file all of my final paperwork on the chemo treatments, go over all of my drugs and then helped provide some general tips on getting through the next six months - essentially as I waited for my labs to come back I was lectured on Chemo 101.

As the afternoon continued to progress, the bone marrow is lurking in the background and then the time finally came! It was time to have my pelvic bone drilled into with ultimate hopes that the lymphoma hasn't spread into my marrow (this would obviously complicate things a bit). Now I'm hoping that most of you have never had to experience this and as I was on the near-verge of breaking my mother's hand as I held it in pain - I whimpered, this better not be anything like childbirth or you can certainly count me out!!!

The biopsy is truly a fascinating procedure because it is four layered:

1. numb the skin around the bone where you want to enter (I know I was in for it when these 5-7 injections hurt 
2. push the needle and break through the pelvic bone
3. remove fluid from the interior of the bone to place in one of the three test tubes sitting at my bedside and
4. scrape the inside of the bone for samples to accompany the fluid portion. 

D was bedside with me to do this procedure and since BMC is a teaching hospital so was the hematology resident that was on duty for the day. While I honor and appreciae the importance of hand's on learning, hearing every little bit and position can occasionally be overwhelming.

I'm sure you're thinking that from the four steps outlined above, it couldn't be SOOOO bad. Well believe you me, steps 2 and 3 had me screaming and crying for anyone that could possibly help me in the moment. Also, with D's guidance I tried to engage in some very deep yoga breaths, which actually did provide a bit of support, if you overlooked the pain that I was inflicting on my chest from my surgery last week.

FINALLY I was done with the bone marrow and made it very clear to both Dr. S and D that I had no intention of consenting for this great procedure to happen again :) I think once a lifetime is one too many for me.

In relation to everything that had happened already in one day, the first round of chemo seemed almost entirely anticlimactic. N brought in one of those XXXL ziplock bags FULL of medicine, all tagged with a bright pink label and black writing - I thought to myself, "At least someone over in the pharmacy has a sense of style and humor when picking labels - pink neon is still so in right now." So all of my bright pink-tagged medicine slowing made it's way into my suffering body.  The A, B and V of my treatments are all pushed into my IV by Nurse N and then the D is a drip over a one hour time. Apparently the D was way to strong for my poor weak veins because after changing the IV, reworking the amount of Saline drip into it, I still felt my left arm was on fire - it was terrible, but certainly a walk in the park compared to bone marrow! Dr. S. was pretty convinced that I was not leaving the clinic with 40 cc remaining so Nurse N worked her magic and made it tolerable for the next time around.

At about 5 p.m I was finally ready to come home from the clinic - HOORAY! and the second I walked in the door I feel asleep. M&B woke me up around 9:30 for dinner, I was awake for a few hours and then crashed again. Yesterday was an up day really leaning to deal with the nausea and trying to get handle on it it all.

We'll see where the rest of this weekend takes me - hopefully to pretty weather where the nausea is small.

Thanks for reading!
xxoxox

T