Hurry Up Already

Greetings from bay 22 - Moakley Clinic.

Today marks the first day of the second round of ICE. I can't believe three weeks have already passed since the last time I sat in this very bed.  This time everything seems a bit different: maybe it all has a little tinge of dread but also a glimmer of hope that this could be the second to last regimen of chemotherapy I will ever have to receive.

Also, I am thankful today for innovation and clinical trials.  If you read my last post, consuming the Mesna is absolutely atrocious, we were trying to do anything we could do to avoid me having to drink it again.  So much so we were going to have an in-home nurse come and administer it through my port.  Well turns out we won't need to do that!  When the doctors did a clinical trial on the administration of ICE, they chose to administer the Ifosfomide in combination with the Mesna in one BIG bag instead of separate small bags and then the at-home-dose.  According to the trial, only 1 out of 70-something people experienced the bleeding so those odds are in my favor :) So when given this option I was stoked BECAUSE I don't have to drink that nasty stuff again.

For those of you who have been following my hair-loss and growth progression - there have been a few updates lately.  Around Thursday, my scalp started hurting and by Thursday afternoon, the first clumps of hair started coming out.  Later on Thursday I gave myself my first haircut and took it down to 1/4" - within 24 hours or so, I had B shave it all the way down to nearly nothing (the only way to describe it is I didn't have to use an attachment on the clippers).  After some monitoring and predictions it looks like I am going to go totally bald - I mean skinheaded softness.  At this point I just wish everything would hurry up already and fall out so I can just have a super soft head instead of the lingering prickly hair that is interrupting everything including my sleep.  I will post a picture sometime so y'all can visualize :)

I will keep you posted on any new developments. Keeping sending positive karmic wishes that this works and will put me in CR (complete remission).

ICE ICE baby

This is an old post I forgot to publish - the chemo brain is certainly coming back!

If only it were as fun as the fancy free Vanilla Ice song... my ICE is less sexy and a bit more tiring and toxic.  Today is my third and last day of infusions until April 13 (thank god).  I do have to go into the hospital tomorrow to get my Neulasta shot, yes bring on the bone pain.

All in all things have been going pretty well - I have been lucky enough to get a bed each of the days which makes it sooooooo much better, this way I can actually get a real nap and peace. However, my curtain mate is definitely snoring right now so I am thankful I brought my headphones for my afternoon nap.

My nausea is totally different this time than with ABVD - it is more a subtle belly ache that gives you the urge to vomit than a more constant wave of nausea.  Last night for the first time I totally gagged but chose taking the Mesna again was a worser evil than dealing with the vomit.

Let me break down this Mesna business for you: in a nutshell I am intended to consume for three days 20mL of IV fluid. Yes, you read that correctly, I have been ingesting IV fluid that is intended to be put into the body intravenously.  Every night, we have been coming home and B has been making me this "cocktail" of hot chocolate and Mesna (which if I was forced I would liken to battery acid, rusty nails and many many other disgusting compounds.)  Being the genius he is, B commandeered my Magic Mouthwash (a lidocane based substance) to numb the mouth first, then has me coat the mouth in peanut butter and then endure the worst cocktail known to mankind.

To also put a bit of perspective around all of this, this stuff is so terrible they give you two doses -- one to consume and the other as a backup in case you vomit within the first hour.  On the flip side, it is actually really crucial to the chemo process because it helps protect the kidneys and the bladder from bleeding and severe irritation.

Well I am getting super sleepy so it is time to sign off.

T

An unexpected turn of events

Greetings from the Moakley clinic, bay number 19 - I'm sure many of you are surprised to hear this! As was I!!!

Yesterday, March 22, I came into the clinic to meet Nurse D with the hopes that she would tell me I had a thyroid problem (I know what you're thinking... I'm crazy) to help explain all this ridiculous weight gain.  Unfortunately that dialogue wasn't scripted as I imagined. Instead of it being about medicines to help stimulate my thyroid, it was more along the lines that my friend Hodgkin's continues to get worse and is getting more dangerous everyday I go untreated.

My "many months" that I was given to decide on an appropriate fertility plan for B and I apparently was a bit of an over estimate given the more sobering news that my first six cycles of chemo did more damage to my fertility than we thought.  I can't really explain how it feels to be told you have the time to preserve your chances of creating a biological match - an additional life partner and then a few short months later be told that your chances are very slim and the risk/benefit factor of survival is too high to continue with the fertility preservation.

After talking with our very accomplished fertility specialist Dr. T, to add insult to injury, it turns out my FSH levels are way above the "normal" levels for women my age. Essentially what this means is that the body is trying to stimulate ovulation but isn't getting anywhere with it.  I think in even simpler terms the higher the FSH, the more difficult it is to get pregnant or to harvest viable eggs.  This news was completely devastating especially on the heels of being told that chemo was an immediate plan of action.

Disclaimer, this paragraph includes some difficult statistics. Please be prepared.

After meeting with Nurse D, we learned from the studies that the survival rate of relapse Hodgkin's patients being treated with ICE and then going into transplant was a mean of 65%.  Obviously to both B and I this seemed very low.  If we continued to hold off on treatment, I would be reversing those survival rates and making the chances of survival much more slim.

So after being pretty blindsided by all of that news, I finally conceded at about 5:30 p.m. and decided to progress with the chemo and wave goodbye to my fertility chances.  Of course some of you may be thinking that there are always miracles, which there are but with my luck lately I'm not crossing my fingers for anything.  B made a very compelling point to me that there are always other options for us to start a family but there is only one me - and if I'm not around for that than all the eggs in the world mean nothing.

Fast forward to today, where I plan to spend 8 hours in the clinic being infused with I, C and E, 2 things of Mesna (a kidney medication) and 1000 mL of saline - PLUS 64+ ounces of water.

Tonight I have to take home a dose of the Mesna that I have to drink.  I will keep you posted as to the results.

T

Change of Plans

It certainly has been an interesting week so far! As I mentioned in my last post I had my final Pet Scan on Tuesday, February 16.  I initially thought that my appointment was going to be in the morning but of course, the scheduling person in the clinic didn't REALLY reschedule my appointment like she said she did. So instead I had to starve myself all day. I must admit I have never craved sugar things as much!

Once I finally got there the scan went well: the IV team was able to put in my IV with little problems and minimal residual bruising and I thankfully didn't have to drink all of the nasty liquid or have the contrast.  I wish I can say that the results were as pleasing as the experience.

It seems as if my Hodgkin's is very very smart -- it figured out a way to resist the ABVD, grow and spread.  According to the radiologist and S M.D. it has spread to four lymph-nodes under my arm pits and into the bottom of the tumor at diaphragm level.

As you can imagine this is very disappointing. The updated plan of action is pretty intense and I'm still trying to get my head around it.  Yesterday I thought that I was going to be told that I was healed and that things were finally going to return to somewhat normal.  Instead, I have to prepare myself all over again for chemo, losing my hair all over again and experiencing a stem cell transplant.

Obviously, this is the shell-shock period - the time to adjust, absorb and seek second opinions. I plan on meeting with a few more doctors to see if the course of treatment is standard and really trying to gear myself up for the long road ahead of me.

More details are certainly to come. Please pray for my recovery and better health days ahead.

Love to you all.

T

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!

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.

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

 

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

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

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