Long Time No Post

Happy Holidays everyone! May 2010 bring you all good health and fortune.

As the old saying goes, no news is good news right? Well for me, up until a month or so ago, I would have to agree - hence the lack of posting...

I can hardly believe that I just finished my eighth treatment which began my second to last cycle! God I hardly wait for all of this to be over - I never thought I would wish time to pass so fast, but I can't wait for the next six to seven weeks to FLY by... let's just hope they do!

Since my last post, things have been relatively uneventful: I went to treatment, felt lousy for a few days, went to work, felt better - pretty simple right? Too simple according to my body - you know me, there has to be a hitch...

Let me set the scene for you - it's a few days after Thanksgiving, my bone pain had finally subsided and I started getting this weird tingling feeling in my arms. I thought nothing of it on Monday. Tuesday came and the tingling started to get a bit more prevalent, I decided it was time to e-mail Nurse D. She gave me a few things to look for and all of the "warning" signs I didn't seem to have - no rash, no swelling, no real pain... well then there came Tuesday night.

I must admit come Tuesday night, I thought that something had crawled inside the right side of my chest and my arm and was setting up shop. First thing Wednesday morning I called D, told her I had lots of swelling and in a panic-stricken voice, she insisted I come into the clinic immediately.  In less than 20 minutes I was sitting in a clinic exam room being told that it was highly probable that I had a blood clot and it was imperative that I get in to see Ultrasound within the next few hours.  The next 20 minutes passed with relative quickness as I internally fretted over a blood clot while D called everyone under the sun to squeeze me onto the books for an ultrasound to confirm her suspicions.

Come 11 a.m. I was back in the hospital, trying to avoid the coughing, hacking patrons of the department waiting room. Within a few minutes I was covered in ultrasound jelly making small talk with my technician who I soon gathered was shocked I was so young and had been afflicted with the big C - it turns out we were the same age, I was only a few months older than him.

All in all, my second lifetime ultrasound, time two being of my neck, arms and chest versus my heart, wasn't too bad - except for the digging around my neck. At the time I couldn't quite understand why he was pressing so hard on my neck and into my clavicle bone, but at the end of the ultrasound, he revealed to me that I indeed had a clot, and it extended from my neck down into my shoulder! See I told you - nothing without a hitch these days - and apparently I can't do anything small. Go big or go home I suppose.

After leaving my ultrasound, things progressed quickly - I needed to pick up a prescription for blood thinners and then learn how to administer them. At the time I was so naive in thinking that the thinners would be a pill or something - WRONG. It was my dear friend injection making its way into my life - TWICE a day. After lots of tears I finally learned how to give myself these injections and successfully administered it.

After that very fateful Wednesday, things have really calmed down except for the bruises on my stomach  that keep popping up after randomly selected shots. Lets hope I can get through the new year without a hitch and take on 2010 with a vengeance.

The next post won't be in two months - I promise!

PET Progress

I have finally emerged from a cloud of nausea and very uncomfortable bone pain with the hopes of a fresh start for a new week. I'm not really sure where this week went but apparently it happened and I am one treatment closer to being half way done!

For some reason cycle three, or treatment five, chose to declare all out war on my body with debilitating nausea that had me back in the clinic on Wednesday for more fluids and IV medication as well as forcing me to make myself very familiar with my prescription bottles over the past few days. All in all, things are better now and I can't tell you how much I am hoping for an uneventful week off.

Sooooo - on Tuesday, B and I found out the results of my latest PET Scan which admittedly was a little bitter sweet. Apparently my naked-eye estimation of the tumor size was a little overzealous and it has likely only shrunk 25% which I was so disappointed about BUT the good news is that the two other tumors on my left side are gone.

S M.D. was pleased with the scans and said that everything looked good. Obviously I would like for the tumor to be smaller as I candidly expressed to him but he reassured me that the results showed that we were on the right path and more importantly I would not need to have another PET Scan until the end of my treatment. While it's not exactly the result I wanted, at the end of the day I am thankful that things are going the way they should and this ongoing chapter has an end in sight :)

Have a happy Sunday everyone!

Light the Night - In Pictures

Finally! Light the Night pictures are here!

The event went so well and I was so overwhelmed and excited with how many people participated either by walking or donating (or both)! Thank you so much to the State Street team who made it such a special night for me and a success for LLS.

In other news - I was the official winner of the top fundraising college/university team walker and the Alpha Delta Pi team was the official winner of the college challenge. I couldn't be more proud of how much money we raised for such a worthy cause.

Rolling with Radiology

This morning was my second PET scan and much to my surprise is was very simple and easy especially given the relatively low energy I went into it with.

My appointment was at 7 a.m. this morning and as B and I grudgingly shuffled over to the Menino building I kept encouraging him to get a coffee at Dunkin so he could keep me company as I endured the nasty liquid I was about to ingest - I mentally contemplated an ounce for ounce contest, but to my dismay he abandoned the coffee hunt. 

As we walked into the hospital it was like the changing of the guard - swarms of different colored scrubs hustling around the building trying to make it to their posts on time for the morning change of command.

Registration went smoothly and in no time I was in my room debating how I was going to tell the radiology tech I did not want an IV but wanted to use my new port. Unfortunately, he told me that the sugar sticks to the lines and with ports in particular it lumps and can show false tumors on the scans... his convincing argument persuaded me to give in and pony up a battered vein.

After my disappointing news that I couldn't take my port for a spin I was already a bit downtrodden and then out of nowhere, like winning the lottery or a new pair of Louboutins showing up on your doorstep, he tells me that there will be NO nasty liquid and NO power injections of the dye contrast! I was ecstatic to say the least. All I had to do was have the radioactive sugar injected and then lay in the machine for about half the time as before.

At this point I was thanking my doctor in my head for this gift he gave me on a morning I was truly dreading. I should get the results of the scan on Tuesday when I go into see SM.D. and have treatment. I will let you all know how much this puppy has shrunk once I learn more.

Light the Night pictures will be up soon!

xoxo

Light the Night is Finally Here!

Tonight is Light the Night and I couldn't be more excited!!!

The support I have gotten from everyone: family, coworkers, friends, sorority sisters has been incredible.

Thank you all SOOOO much for helping raise money and donating your time to such a worthy cause. I will post pictures from the walk soon!

xoxo

We'll Call It Even

Tiffany: 3 Port: 1

Chemo today went really well compared to last times' adventure that has lovingly left a throbbing track-mark up my right arm. While I have had a bit more experience in the infusion department, see aforementioned score, the port's 1 infusion trumps all of mine.

I had quite a bit of unwarranted anxiety going into today's treatment. I was not looking forward to the customized needle that they would need to access the port spot - especially since I thought the incision was a bit too close to the disk... but it went swimmingly, even if the needle was really big and semi-daunting!

I woke up this morning put on the numbing cream, scurried off to Moakley to secure my new favorite window seat and had the needle put in with little cringing. According to B I actually looked surprised when Nurse N put it in because I was anticipating so much more pain. 

As I mentioned my infusions went really smoothly especially with my dreaded D drug. What typically takes 2 to 2.5 hours took us 55 minutes and some change - with no hot packs, multiple calls to Nurse N or general discomfort. The only downside to the port that I see at this point is I actually have nausea today which I don't typically have.

I think I can trade a little nausea in exchange for a far smoother experience. 

I guess all-in-all, it was a pretty decent day... especially since too many italian food commercials on TV are leaving B and I with takeout from Stella, which in my book is a nice close to a very long day.

A Whirlwind Week

Fall has finally arrived and I am embracing the last few weeks and days of sunshine and relatively warm weather. I am battling my first cold of the season which at this point is just really obnoxious - it's not as if I don't have other things going on in my body right now...  :) Well, as I sit outside on my patio basking up the few hints of fall sunshine I thought I should catch all of you up on the craziness of last week:

I think it might have been the most exhausting week I have had since I had an official plan of action. In my last post I told you about the port surgery I was having to help with my chemo infusions. To help organize my thoughts that are now getting a bit scattered due to the revered "chemo brain" I am going to separate everything for your reading pleasure.

Port Surgery
On Monday, Sept. 28, M, B and I packed up very early, thermos of coffee in hand and headed over to the the East Newton campus to check-in to Medical Short Stay. Judging by the almost two hour wait and the crowded waiting rooms, the 28th was a very popular day for surgery! At the one hour mark, I got up to ask the woman at the registration desk what the status was and to see if I was going to be admitted soon.

About five minutes after I asked Registration Lady my status she called my name to head back to Medical Short Stay. "Finally!" I thought to myself, so B, M and I gathered our things and headed back. Much to my dismay, she was only trying to move me to another waiting room which was approximately the size of a shoebox with 15 coughing, sneezing and generally ill looking patients. To her shock, I refused to go into the room and as I looked at her and said "I'm a Cancer patient, I can't go in there with that many people..." she huffed, rolled her eyes, mumbled something under her breath and reluctantly walked us back to the main waiting room. Apparently she interpreted my inquiry as "Hmmm, this patient seems anxious to get going, maybe I'll move her to another waiting room" when in reality all I wanted to know what how much longer she thought it would be.

So the waiting continued, B eventually left for work, and then finally I was taken back - for real this time. I must admit it was like a homecoming reunion as I entered Medical Short Stay as all the nurses that took care of me during my first needle biopsy on day 2 were there again. I entered with lots of hugs, "how are yous" and "you look greats" which always helps boost the spirits especially when you have no hair and you are about to go into surgery.

Once I was finally all prepped and ready, I was pleased to hear that the surgery room was ready for me so I was going to go straight in.  At 9 a.m. they took me in to my room in the radiology area and began the pre-surgery rigamarole. My doctor came in, talked to me about all of the very scary and "rare" things that could happen to me during the procedure like air bubbles forming in my chest and other super exciting things. I proceeded to tell my surgeon and the entire room that my plans for wearing a strapless wedding gown and my general affinity for summer dresses better not be affected by this procedure. We wanted minimal scarring and a very small incision. This news obviously fell on deaf ears and blank faces. The best that they could muster was "we'll do what we can" - I guess that's all I can ask for.  Once I had officially flustered them with what I assume they thought was inane news, the real surgery preparation began...

As I laid very still on the operating table staring at the ceiling, my surgery nurse began to administer the drugs that they claimed were "conscious sedation" - I beg to differ. Simultaneously, I was prepped for surgery which involved six minutes of very thorough scrubbing with a brush and soap, subsequently being swabbed with another form of alcohol cleaner, they covered me with a very large surgery drape (it wasn't until they had already temporarily covered my face did they ask if I was claustrophobic) and then began ultrasounding the veins and arteries on the right side of my chest.  While it is kind of cool to experience the whole pre-surgery preparation, I couldn't help my feel like an outsider looking in on something I wasn't privy to.

While this whole process was taking place the medications they were giving me began to kick in - THEN the surgery began and I felt like I was going through bone marrow all over again. The doctor began with five or six shots into my muscle around the placement location which hurt so badly. Shortly after the area became numb and I thought I was in the home stretch - I would close my eyes, wake up a bit later and it would be complete.

This notion was a bit misguided. My idea of conscious sedation was obviously a bit different than what it actually was: I expected the "out-cold" idea of anesthesia except being able to respond if need be. In actuality it was more like I was aware of each push and pull that was going on on the other side of the drape.

So the remaining surgery time proceeded as follows: I laid there with my head to the left, periodically asked for more drugs and they pushed, pulled, probed and threaded the port into my chest. At one point, which looking back on it is kind of cool, I felt this weird tingling sensation go up my neck and it turns out that that was the moment when they put the tube of the port up into my neck.

Finally around 10:30 a.m. I returned back to Medical Short Stay to recover and after a few hours I was released to go home.  The pain of the procedure didn't really begin to set in until late in the afternoon on Monday and into Tuesday where the bruising, itching and throbbing continued.

Chemo
Chemo on Tuesday was really brutal compared to the other treatments - I can only hope that treatment four is better. The day just started off really crappy - like a typical girl I couldn't figure out what I was going to wear, the only weird thing about it was I couldn't figure out what head scarf I wanted! I must admit, having to get dressed in the "perfect" outfit and then match a scarf and tie it comfortably on my now bald head can be such a pain. After three scarf tries I went to my new favorite, a beautiful and cheery pink Hermes... it is like the perfect LBD of the Cancer world.

Finally M and B dragged me out of the house, of course behind schedule, to head over to the clinic. Like every visit, it started with a weigh in, which is certainly my favorite thing to do in the morning. After being confronted with the insult of both pounds and kilograms I rounded the corner hoping for my perfect window seat and it was taken! I was so distraught and B and M couldn't help but chuckle at my exasperation.

Adding insult to my supposed injury, Nurse N took a look at my port surgery and the lovely folks in radiology put the steristrips right on top of the actual port so we were unable to use it for my infusions! Luckily I still had a good vein left in my right arm to take my treatment but the medicines really reacted aversely with my body. My D drug, which typically can be infused in an hour, took 2.5 hours and burned my arm every second of every milliliter.  Fortunately B and I brought season one of Mad Men, so the dashing Don Draper kept my mind off of everything for a little while. At about hour three, I became so anxious and frustrated with how long it was taking but after much coaxing, B convinced me to rest my very blurry, bleary and tired eyes.

Once I was done, we went home where I took a nap which is was I did most of last week. Energy was very low and bone pain was very high.

All in all, the week really took its toll but this weekend is going to be really fun as quite a few of my best friends from college are coming into town. It will be a great high before another week of treatment - nothing can be better than some old fashioned fun.

Love you all,
xoxo
T

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

I'm Radioactive

So today was the infamous, ever distressing and elusive PET/CT. When this morning came, I couldn't believe that I was actually having it today. Mind you, that on two other occasions I thought I was going to have this test, neither of which came to fruition, much to my stomach's dismay.  I guess the third time's the charm.

The difficult thing about the Positron Emission Tomography CT scan is that it involves a lot of preparation, both mental and physical! The night before you have to eat a high protein dinner, stay very warm, make sure you don't exercise within 24 hours of the test and the most important, and obviously the most difficult, consume no fluids, food or sugar after midnight.

I was well on my way to a successful test with a full belly of Smith and Wollensky filet mignon until I woke up this morning and all I wanted was water, juice, coffee - any fluid would have fit the bill. Needless to say, that wasn't in my cards. I knew that things were going to get a bit shaken up as I was walking out of the house, my stomach was grumbling and I was feeling a bit woosy from the pain medicine.

Our trip through radiology registration was very quick and within minutes I was being setup for an IV and told that I would have to drink two and a half bottles of a delicious, paste-like pina colada wannabe sugar agent and then would need to wait another 60+ minutes before the test would even begin. As I was processing all of this riveting information I began to cold sweat, proceeded by nausea, lightheadedness and then the compulsion to pass out in the room all while the technician was trying to finish my IV. This escapade then resulted a nurse having to come to check me out to make sure it wasn't anything "serious."

Finally, the technician walked in with the steel box full of radioactive IV liquid that he proceeded to push through my poor bruised veins. If all of this wasn't enough, I had another hour to wait before the 45 to 50 minute test even began.

After a nice nap, I had to put myself back on the defensive for the test knowing that I was going to spend the next hour completely still in a small tube. I'm not sure if any of you have had a CT scan, but an integral part of it is that they inject you with a dye contrast which happens to make you very warm, allllll over, and typically feels like you have peed your pants.

After CT scan number one, I think I could have done without that feeling ever again. How lucky was I that today, I got the dye contrast TWICE - this dye must have been stronger or something because the burning, warm sensation streamed through my entire body including my esophagus, belly and the waist down which obviously made me feel like I had peed. It was so dreadful.

Thankfully it is all over and I am apparently no longer radioactive - at least I don't think so...

Tomorrow is a big day, treatment one begins. Expect another post soon.

xoxox

T

Outdoor Escapades

While in the hospital, it was really to everyone's shock that I was actually a patient there.
Below is a photo of B and I sitting outside the med school during one of my escapades.

More outdoor stories to come!!

 

Surgery Sucks

Well I have officially survived day one post-surgery for biopsy number two. While the surgery, the two+ inch incision that is currently inhabiting my right side and the four incisions on my left wrist really hurt, I finally have a prognosis.

The doctors have finally confirmed that I have Hodgkin's lymphoma! It seems so strange to actually be hoping for a certain kind of cancer but the cure/survival rates are so high and it reacts really well to chemotherapy (or so I hear.)

Chemotherapy still seems so mythical to me. I know I continue to talk about it and I know that Tuesday is the day, but it hasn't really set in yet. Today M and I went over to Walgreens to pick up all of my medication that I am supposed to take with me to treatment. I was shocked when I saw that my dear friend Express Scripts saved me $350+ for THREE pills. I am really praying for a miracle that this prescription makes me feel like a million bucks.

I have a few days of relaxation and healing ahead of me before Monday's PET/CT and Tuesday's bone marrow biopsy and round one/cycle one.

Now, it is time to sleep.

xoxo

The Roller Coaster Ride

Now that I have finally been able to slow down the ride of the past 5 days, a recap might be helpful:

Last Thursday, August 20, in preparation for B's and my trip to Ireland, I went to visit my doctor for a prescription for what I thought might be walking pneumonia. It turns out that after extensive testing, two biopsies, two hospital stays, enduring pokes, prods and blood draws, I have a very large tumor in my chest that is presumed to be Hodgkin's lymphoma.

At this point in time, the doctors and pathologists are still not 100 percent positive as to the diagnosis, but are leaning toward it being malignant and being a form of lymphoma. I will be enduring some form of chemotherapy for treatment.

Life in a Box

Today as part of my preparation for surgery, it was required that I go for a PFT, or for any of you (like me) who have no idea what that is, a Pulmonary Function Test.

Now please be reminded that dear Tumor is depressing half of my right lung, so imagine my apprehension when the doctors instructed me to go in for this test. The first thing that pops into my mind is passing out from lack of breath and being left for dead in a creepy BASEMENT.

While obviously this vision is a bit dramatic, I was still a bit curious as to why the pulmonary division was in the basement of BMC. Well, the second we walked into the sterile, yet semi-dingy white room, it all became clear. Usually hospitals have the overwhelming smell of alcohol, hand sanitizer and the booming sound of silence - this department was certainly the exception.

BREATHE!!!!!!! IN, DEEP DEEP NOW DEEEEEEEP. NOW PUSH IT OUT.... PUSH PUSH PUSH push push push, HARDER!!

Where had we just entered? A birthing suite? I thought I was signed up for a PFT?! Oh no, I indeed was in the right place and there sitting aside a glass box was a breath cheerleader urging, pushing and coaching a patient through the vigorous testing that I was about to experience.

Now I know this is a bit drawn out all for a breathing test, but I had to give you the back story. As you can imagine I played my part in the test to achieve maximum results - complete with panting, pushing and actual exertion! The test was so hard, especially since I had not eaten in 15+ hours. At one point I literally thought my abs were going through a Baptiste yoga class.

Also, as a precursor for the photo below, I'm sure most of you know that I am semi-claustrophobic, so the combination of a peppy breath cheerleader a glass box, hunger pains and exhaustion I was ready to escape!

Welcome

All-

Welcome to my blog, "An Affair to Remember" - the sole purpose of this is to really keep all of you that I love and care about up to date on my progress through cancer and chemo.

xoxo

T