Like A Whole New Beginning

For the past few days, each morning has felt like a whole new world. 

Waking up and knowing that I don't need to shuttle myself off to the Farber or BMC, wear another Johnnie or have another IV (at least for now) has been a really strange feeling. Maybe as foreign as when Arial walks on sand for the first time in The Little Mermaid.  While I have lived most of my life as a fully functioning, healthy individual, the past year has certainly taken its toll on both my body and spirit.  Not to seem too melodramatic, there are times when I've almost forgotten what it feels like to be "better" and be capable of doing anything I want without any hindrances. 

While I wish I could run a marathon, go to a Baptiste power yoga class and resume my life as the Energizer bunny's preppier friend, I'm still not there yet - but I am closer than I was. Last Monday (8/30) I celebrated 90 days out of transplant so that means no more food or space restrictions (except no buffets/salad bars for a while). It was a huge victory for me last week when I asked my medical team about eating frozen yogurt (my favorite) and they said that was fine. Obviously my first thing I had on Monday afternoon was peanut butter fro-yo from J.P. Licks.

On top of being restriction free and full of fro-yo, I celebrated another big milestone last week: my last radiation treatment was on Friday! Radiation as a whole has been so much easier than chemo and transplant. It certainly isn't fun - there is nothing nice about having to go to the hospital every day, battle BWH traffic for 14 days, throat problems and a fun, itchy rash on my chest. BUT it is still better than nausea and infusions. Hands down. 

I do think that my radiation team thought I was a bit jaded because anytime they asked me about the discomfort, I always compared it to the pain I was in during transplant (10 out of 10) and this just can't compare. Obviously at times it did feel like someone was stabbing me through the throat but it has never gotten above a 5 or 6 on the pain scale. 

While radiation is over, I am still experiencing the fatigue, throat issues and skin irritation so I am hoping that everything will subside in the next week or so. It's amazing how trying to ignore the fatigue just ends up kicking you in the rear when you finally slow down.

Besides all of my radiation side effects subsiding in a few weeks, I have finally been approved to get rid of the prednisone on September 20.  This isn't really enough time to start looking normal again for my cousin's wedding, but it is going to be a super important day!

I hope you are all well, experiencing good health and good karma. I will post again after I get my port taken out.

xoxo

t

Week Two Begins

Up until last week, things with me have been super quiet hence why I haven't posted lately.  Pretty much my days had been occupied by long walks, going to the beach and trying to heal myself in as much isolation as possible.

The healing would have been a lot better if I wasn't on these damn steroids to heal the pneumonitis.  Of course I have experienced the typical and awful side effects of my dear friend Prednisone like "moon face" (not my description), joint pain in my knees to the point where I couldn't walk up the stairs, terribly tight muscles and of course my favorite, weight gain...  Over the course of the past month, I have negotiated my way down to 20 mg from 90 which is a huge victory on my part. Obviously I wish that I weren't on Prednisone at all but that is a battle I continue to lose.  I foresee another six weeks on this toxic drug.

Last Tuesday I began radiation which has been going pretty well. I'm not exhibiting any real side effects at this point: my throat is doing ok and my skin isn't too irritated -- all positive things!

When I met with Dr. M (my radiation oncologist) on Monday, he outlined what was going to happen for the next few weeks. In a nutshell, it was too risky and dangerous for my lungs to give me the full adult dose of radiation typical for Hodgkin's patients (3,000) so instead he was going to order 2,500, a dose consistent with pediatric radiation. He felt that this lower dose would be much more "kind" to my lungs and that a heightened risk of "tumor recurrence" was unlikely.  The only real difference I see is that the number of treatments I have to go through is less - hooray!!

I think the coolest part of the whole radiation process so far is the blocks they put in the machine.  The blocks help prevent the radiation from penetrating areas that don't need it like my heart and parts of my lungs. The blocks come in two parts: the first is inside the machine and can adjust to different shapes depending upon which area they are about to radiate.  This part is so cool and strangely similar to those toys you saw at the science store as a kid, you know, the ones where you can put your hand in the thing of nail-like metal things and it held the shape?  The second part is this tray that they slide into the machine that has two steel-looking cutouts that are in the exact shape of my vital organs.

My radiation team seems really nice - there are about six of them and they are all so precise (thankfully!) and kind. There have been points in my five treatments where I have felt a bit like a rag doll as they pull on the sheet to move me the smidge to the right they need.  All in all, this process is super quick. I might be on the table for five minutes, at the most!  The past few days, I have gotten in and out in less than 20 minutes which is so glorious and unlike chemo.

The next two weeks will be huge milestones for me: on Monday, August 30 is 90 days so that means no more restrictions and on Friday, September 3 I will finish radiation. I can't even tell you how exciting this is.  More updates on radiation to come.

xoxo

tiff

A Minor Setback

Happy Sunday everyone. This week sure has been a crazy one! B and I certainly enjoyed the long holiday weekend but were confronted with an unexpected turn of events come Monday night.

As most of you know, it's been very hot here in Boston with tons of humidity so I thought my shortness of breath and overall fatigue could be blamed on the weather - not my own shortcomings... but of course this notion was too good to be true when I tried to walk up our stairs and was so badly out of breath I was huffing like a character out of Red Riding Hood.

As you can imagine this did not sit so well with B or me so I gave in and paged Dr. L where she proceeded to tell me that I was to come in the next morning for them to take a listen to my lungs, give me some medicine and then send me home.  HOW NAIVE I WAS.  I go in Tuesday morning and as my oxygen levels held pretty solid in the 80s (normal is high 90s/100s) they admitted me to the hospital!  And people wonder why I have a paranoia about going to the doctor these days -- they say one thing and mean the other.

Apparently I have what is called pneumonitis which is an inflammation of the lungs caused by all the chemo I have gotten. This can be treated with lots and lots of steroids which is amazing -- nothing better than weight gain, fat pads and holes in your stomach (just a few of the side effects).  While the steroids aren't ideal they do seem to be working, I am able to breathe outside as long as it isn't super humid and can successfully go up and down the stairs again.

While in the hospital I did have my four+ hour long appointment with the radiation oncologist that yielded a nice break from my hospital-provided-prison-cell and four new tattoos! While these tattoos are indeed permanent (I know, I never thought I would get one either) they are super super tiny and are barely noticeable.  Three of the four right now are almost invisible, but the one under my right arm is a bit bruised (at least that's what I am hoping).  While I traded in the experience of an artist named Slash for a Cat Scan table and a lady called Jean, I am officially inked everyone.

These new blue freckles will be the markers that the radiation people will use to line my body up on the table every day when I go in for radiation. They claim it is the most efficient method especially since the body size can change with the treatments (let's hope they mean smaller...)

I guess I should also take a step back and mention that Dr. M, the radiation oncologist, does think that the radiation is totally needed to help eradicate this disease entirely.  My radiation field will likely be from the bottom of my esophagus to the bottom of my ribs, including the underarm area. This is certainly a big area that does propose a few inherent risks - obviously throat irritation from the radiation, heart and lung exposure (which will be prevented as best as possible with shields) and breast exposure. The breast exposure puts me at a heightened risk for breast cancer beginning 10 to 30 years from now - ugh right?!

All in all though, I have to take a step back and realize that this will likely cure me of Cancer now and that if I'm afraid of the future I'm likely going to miss something really important that is happening right now. So, I've decided to take this risk. To jump feet first into the unknown.

So today's another journey. Hopefully I can keep myself out of the hospital and enjoy my first day of "takeout" (and by takeout I mean sitting outside on a patio...)

Part of the Numbers Game

Happy holiday weekend everyone! While most of us look forward to barbecues, trips, fireworks and really cold beer, this fourth of july I am celebrating six glorious years with the man I love and my last full week of a pure "bacteria free diet."  I'm sure B and M are thanking all 50 stars that they don't have to wear a dreaded pair of non-latex gloves or a beautiful 3M procedure mask another day in their lives.  

July 11 is 30 days or 40 days -- depending on where you start counting.  Thirty days marks one-month hospital free even though I will technically be day plus 40.  You can bet your last dollar that on July 11, B and I will be ordering takeout of some sort or going out for pizza (the two things that can be reintroduced to my diet.)

I must admit that the past few weeks have been trying.  We never really realized just how much we went out to eat. Or drank for that matter. No alcohol, no restaurant food, no thin-skinned fruit et cetera et cetera certainly took some adjusting.  The one thing I still can't get my mind around is I won't be able to frequent my dear JP Licks for peanut butter frozen yogurt for ONE YEAR!!!!  While peanut butter froyo is out, I have been certainly eating my fair share of PB&J lately.  To combat culinary boredom, I have been trying to find my inner Paula Deen and have succeeded on a few fronts: apparently I make a mean lamb chop courtesy of Hello!, a pretty delicious chicken artichoke pasta and a crispy pan fried chicken, oh and I almost forgot the butterscotch cookies that melted like buttah...

One of the other things that has been pretty hard getting used to about being home is that I remember nearly nothing from the hospital stay.  I just now had to go back and read my blog post about day plus one because I recollect nothing about it - just sitting on my bed writing!  As time goes on, stories have to be retold and B has to constantly remind me of the goings-on.  I have ultimately likened this experience to a partied-too-hard-college-Thursday-night. You go out, crazy things happen, you think you are making super sound decisions and the next thing you know, it's Friday morning and you have no idea how you got home or what happened after pre-gaming.  My last point of coherent memories is May 26 and my Friday morning came about June 10... pretty super I must admit.

Since my release, I have been to Dr. L twice which have both gone really well - my counts are slowly recovering... well let me rephrase this, most of my counts are recovering slowly. My platelets on the other hand tripled in one week thanks to my "robust" bone marrow! I am finally within the normal threshold for platelets (187,000 last week) which means I got to have a beer/one glass of wine AND I was switched to a less gag-worthy antibiotic. My white blood cells are half way to normal and my hematocrit is progressing at a good rate.  All small victories!

My appointments with Dr. L have now been extended to a month instead of every week which is great because I hate waiting in the waiting room at DFCI -- it's really depressing to look around at the packed waiting room and be reminded what an awful and omnipotent devil Cancer is.  

My next cancer-focused event is July 7 when I go into meet with my new radiation oncologist for another consultation and likely mapping.  From what I understand, mapping is where they will analyze all of my scans and decide where to aim the radiation beams. As all of you know, my tumor is a huge pain in the ass so obviously its location poses an inherent risk to my heart (SCARY!!).  But, my new doctor is a specialist in Hodgkin's disease and is very accomplished with tumors like mine so I feel pretty safe -- especially since he has a grandpa-like quality to him :)

I will keep you all posted on my upcoming radiation schedule and my takeout experience.

Best to you all! Happy Birthday America!!

T

Home at Last

I am finally home! I got back yesterday afternoon around 2 p.m. which is about 5 days earlier than I was supposed to get home.

Thank god.

I will post more later but just wanted to let y'all know.

xoxox

The Missing Post

Many of you have been patiently waiting for the infamous list of can and cannots. When you’re a prisoner of your own room the only things you want are the ones that make you feel like home. Of which the most notable of those, flowers and food, are off limits. Here is a short version while she is still in the hospital.

No…

• Fresh or dried flowers.
• Delicious dished that many of you have offered to prepare.
• With the drowsiness and fatigue T hasn’t been able to keep up with reading the books and magazines that many of you have passed along so I think it is a good idea to hold off on reading material for a week or two.
• Latex balloons or anything else that has latex.
• No candies with nuts.

Yes…

• Candy and food that has been processed and pasteurized.
• Mylar balloons.

Visitation is obviously based on how T feels. If you have a day you would like to visit contact me in advance and then I will let you know she feels that day.

B 

T Plus 6 and Counting

No, this isn’t a blotched NASA launch but it might as well be if I’m piloting T’s blog. It’s B here again filling in the blanks since T’s last post five days ago.

As of T’s last post (Day +1) she was full of energy and in good health despite being well on her way to a non-existent immune system.  Since then she has had two blood transfusions and one platelet transfusion. Logistically, there was nothing to the three additional transplants with the help her Hickman Line. However, emotionally it required wrapping her mind around the thought that it wasn’t her own.

From Day +3 to Day +5, T’s white blood cells have continued plummet resulting in the growth of increasingly painful sores in her throat and mouth. After responding 8 to the question “On a scale of 1 to 10 what is your pain,” after every dose of painkiller wore off the team at 6b installed T’s very own PCA that delivers a morphine like drug at the touch of a button. On top of that the itching caused by the blisters that keep developing under her Hickman dressing are enough to drive someone mad.

I wish we were counting down but it seems more like we are now counting up until her white blood cells blast off.

For your viewing pleasure I have graphed the indicators of T’s immune system.

WBC – White Blood Cells

            The lack of a high WBC count is the biggest factor in the 
            development of her sores and pain.

HCT – Hematocrit

            The portion of the blood that is occupied by red blood cells.

            HCT levels less than 26 require blood transfusions

            Excuse the Gap.

PLT – Platelets

            PLT levels below 10,000 require platelet transfusions

            Table Shown in thousands (000s)

Key

* Blood Transfusion Days

+ Platelet Transfusion Days

Day After Day Zero

So yesterday was the day that I got my cells back and I must admit (as they told me it would be) it was a bit anticlimactic.

The nursing staff began me on fluids around 10 a.m. yesterday so that when I got my cells back they would have enough fluid in the body to swim to where they belonged (this is my explanation, not the scientific medical one).  After two hours of dreaded hydration, it was time!

They brought in a very small bag of cells, hooked it up in combination with some saline, and the result was a drip of runny-Bloody-Mary-mix.  While a Bloody Mary would have been openly welcome, the taste that ensued was so not so much as appetizing.  The whole process took about 40 minutes and two hard-candies worth of time -- that just seems so mind boggling to me.  The cells that are effectively going to restart my entire immune system can be infused in less than the time it takes to watch Mad Men.

While I try and still grapple with the fact that I just had a stem cell transplant and I am forced to eat off the limited BMT (Bone Marrow Transplant) menu, life here in the hospital is tolerable.  The BMT precautions are so over the top: I can't wait for a real cup of coffee and a breath of fresh air, but I have to keep reminding myself that this is my insurance policy I won't ever have to fight Cancer again.  Let me tell you what - that Silver Lining is hard to keep finding.

The latest escapade in the world of BMT dinners is that I ordered chicken fingers last night, and typically when you order such a dish, you get some kind of sauce to go with it (my particular sauce of choice is honey).  Well much to my dismay when dinner came, I had chicken fingers and fries with no sauce because apparently honey is a "natural product that can cause infection."  Obviously, I think this is a load of crap, but I don't make the rules unfortunately.

The other thing that sucks super big time about this place is that I can't feel the fresh air, breathe anything that isn't hepa-filtered, go outside my stupid pod or even walk without two "procedure masks" and gloves on.  When I feel good, I walk the floor pretty relentlessly, counting how many steps I take until I seem to lose count or until I feel the masks might suffocate me.  And when I feel bad, I lay in bed attempting to do anything that will take my mind off how much I don't want to be here.

Today I should get a bike for my room which should help with the boredom, fatigue and general feeling of laziness. Hopefully, if I bike everyday that I am allowed to (dictated by my counts) I won't be such a fat lazy mess when I get out of here.

I have at least had a few small victories around here: I am no longer on constant hydration, which I LOATHE... and I have argued my way out of the duck mask.

Now the duck mask is pretty much as awful as it sounds, it is a thick-layered orange material that has a VERY VERY small plastic band on it that secures to your head. Some of you might know that I have a small head, to the point where I can wear children's things - and this said duck mask almost cut off the circulation to my brain stem and to my cheeks.  Needless to say, I have negotiated my way out of the duck mask and into two procedure masks.

Ugh, how these small things are life's glory right now.

Love you all.

xoxo

Just a Quick Hello

Right now is the first time in the past few days that I have been able to get my mind around anything besides sleeping and resisting the urge to throw up. I have officially made my home here at 6B at the Brigham as comfortable as possible - which isn't too hard to do since I have some super stellar nurses.

I have moved into a bigger room which has its pros and cons - pros: more room for M and B, cons: shower isn't as good and not as much light.

Last night was pretty dreadful, I had horrible nightmares, was in considerable muscular pain and couldn't shake the overwhelming desire to dry heave all over everything.

Today is finally a bit better, I have showered, which always makes me feel better and I have walked around the pod.  

In my last post I was bragging about being a stem cell machine - apparently I am not as powerful as one man on my floor - he harvested 20 MILLION!!!

Well I am losing attention quickly. I'll post again soon.

T

I'm a Machine

Seven days after the actual date - here I am, exhausted from a fun-filled weekend in Nashville, and contemplating running away in hopes that being admitted to the hospital today won't actually happen.  People always say denial can be a super fun place if you make it that way :)

If you haven't been reading lately, shame on you, and if you have been checking in since my last post - many apologies for not posting sooner.

After last week's harvest, B and I received good news for once - I produced more than TWICE the stem cells needed for transplant -- in ONE day. So if you aren't really a math person and not so quick on your toes, I'll just go ahead and come out with it: they were able to harvest 4.83 million stem cells last Tuesday which I'm hoping is the center's record - I'll keep you posted on this after I do some sleuthing.

So after a much shorter week than I anticipated I was able to prepare for a weekend of mental escape before I had to return to reality.

That reality is possibly three+ weeks at BWH, four days of round-the-clock chemo, 0.0 white blood cell counts, blood transfusions, nausea meds and all of the other terrible side effects of chemo and killing your entire immune system.  Needless to say, as you can imagine, I am bursting at the seams with excitement.

All joking aside, I am excited to be on the other side of all of this where I can experience a day when I know that the peach fuss on my head means that my old flowing locks are soon to follow- for good, that my eyelashes will really be able to grow in to the full potential achieved by Latisse, and that I can reclaim my body and my life that I used to have. These seemingly inconsequential milestones are going to be my fuel these next few weeks - the propellent to keep me going.

Don't think that once I'm discharged that life will be fun or exciting - the list of do's and don'ts really weigh on the side of don'ts unfortunately... but I have to keep reminding myself that hopefully, this is the end of Cancer, this is the last time I have to deal with this.

I will publish my list of don't and cant-have's in the next few days so that if you are compelled to send/bring things over, you are well informed.

Posts will likely be scarce and/or drug-induced in the next few days so when I regain my mental capacity I will make an appearance.

Keep your fingers crossed - I need lots of good karma in the next few days.

xoxox

T

Surrender to the Machine

My traveling electronic shop is up and running again as I sit here at the Kraft Donor Center sporting my Bose headphones, listening to my iPod, blogging on my iBook and texting on my iPhone - well actually I think this sounds more like an Apple endorsement...

This is certainly an interesting experience, this blood center place. Currently there are six of us on my side of the floor that will go through harvest today - I have already started and can officially see the beginning of my stem cells in the collection bag. The setup of tubes and everything is pretty wild. They are using my new Hickman Line that I had put in yesterday which is yielding its own complications and pain. While my neck is throbbing from the surgery it is a pretty cool contraption - it has one line that takes the blood out and one line that puts it back in.

I must admit that I never realized how dark my blood is! It kind of reminds me of my adorable red Burberry patent flats... weird thought, I know.

So as I mentioned before I am sincerely hoping for two million stem cells in record time. According to my nurse, my stem cell count yesterday was around 20-something and they were expecting it at around five. Hopefully this means I can get all two million today - I should know more about my progress later on today.

The unfortunate thing about today is that we can't be disconnected from our machines - at all, for any circumstance.  This should make my overactive bladder very happy :)  My goal for today is to watch a few movies, work on B's new needlepoint belt and try and get some sleep since that was a bit difficult last night.

Keep your fingers crossed.

Below are some pictures of the machine and one of me with all my blood on the move.

Just Another Day... kinda

My transplant is quickly approaching - while I am not sitting in the clinic or the donor center this weekend, I will begin what they call mobilization.  For the next five days, I will be getting two shots per day that help stimulate bone marrow growth.

When the bone marrow gets too full with stem cells, the SC are forced to escape out into the blood - hence causing bone pain.  One of the nurses said the reason patients are in so much discomfort and pain is because the stem cells are exploding out of the marrow (nice visual right?).  As you can imagine the pain is imminent.

For those of you who have read previous entries I have talked about bone pain before and according to some professionals, this drug I am going on is the industrial strength rendition of my old, apparently sissy version.

So while this weekend is supposed to be beautiful and outdoor activities should be in the queue I have a hunch I might be in a Percocet induced stupor.

Monday I go in for my Hickman line placement and then Tuesday I am off to the Kraft Donor Center to surrender my stem cells.  I will keep you all posted on my progress but as I mentioned in my last post, we are hoping for two million stem cells in record time!

The Magic Number

The past few days have been so insane! My mom and I have spent approximately 24 out of the past 72 hours at Dana Farber clinics - while the hours have been overwhelming and exhausting, the results have certainly been rewarding.

On Monday, I went through quite a few tests to prepare myself for the stem cell transplant with no idea if my fourth Pet Scan was going to provide me with good news -- well, drum roll please, at 4:30 p.m. on Monday we found out that I have no residual disease left!!  I can't even explain how exciting this is for me and my family. I'm sure many of you are sitting at your computers asking, "What does this mean?"  Well, what it means is that I am now preparing my body and mind for a autologous stem cell transplant (translation= I will use my own) at DFCI.

I'm sure you might also be asking, well why do you need a transplant if there is no disease visible?  Essentially, it is the superglue that makes the remission stick and forcing the body to relearn everything it has ever been taught -- AND if the body doesn't know Cancer then it can regenerate itself without ever knowing Cancer's torturous existence.  The transplant is so powerful that I will have to receive all of my childhood vaccines again because my immune system will be completely erased.

This process is certainly not easy but seems to be our only option to defeat this disease -- it also holds quite a few magic numbers that M, B and I will be living by.  On May 18 I go in to have my stem cells harvested and we are hoping for 2 million in record time (preferably one to two days); on May 25 I am admitted to the hospital at Brigham and Women's (BWH) for hopefully less than 21 days; seven days after admission, I get my stem cells back and I experience the meaning of Day Zero; and at 100 days I look forward to living my life as close to normal as possible.

For the next week or so, I have to wait for insurance approval, go in for more blood tests and then I prepare for surgery to have a Hickman Line put in on May 17.  I will blog again soon but I wanted to share the good news with all of you!

xoxo
T

Click here to read more about Stem Cell transplants.

Wait and See

Hey everyone - sorry it has been so long since my last post but I am finally feeling a little better and closer to my normal self (well as normal as that ever was.)

I have been trying to keep myself busy during the days with a variety of projects, none of which seem to be cleaning the house or unloading the dishwasher (much to B's dismay... just kidding honey) The most recent project I have picked up is an old scrapbook that I started, oh about four years ago, and have rekindled my romance with scrapbooking.  Apparently this project trumps the two needlepoint projects that I currently have going on, The Girl with the Dragon Tattoo, the hats I need to make for the hospital or the page full of thank you notes I need to write -- so to all of you who sent me a heartfelt gift for my birthday, I promise your thank you note is coming and I LOVED everything!!

Besides piling crafting projects on myself, I have also been working at trying to get my head down to totally bald - as I mentioned in my last post, I thought it was imminent - now it is pretty much a reality.  I have recently learned a few things about being bald and hair loss:

1. it isn't as easy to lose hair, when it is super short - I have since come up with a solution (that is to come later)

2. a smooth head seems to stick to everything.  Just yesterday I was laying on the couch with what I like to think are my softly lotioned hands, and low and behold - my hands STUCK to my head.  How many lucky people can say that?!

3. your head really is a huge heat conductor - it was 70-something degrees and I was walking around the house with a cashmere beanie on.

As I have been trying to enjoy the weather, I have also been trying to not burn more superwhite scalp to a crisp. I never knew how fairskinned I really was - I mean it is astonishing. Thank god I tan easily or I could give Nicole Kidman a run for her money...  I mean people say fair skin is back in, but I think two-tone is the next thing, tan face and white scalp is really the look of the future.  

According to my mother, I have never been this bald, EVER, not even when I was a baby - so needless to say, it has been an interesting experience for all those involved. SO as I mentioned in bald-point-number-one, getting to this almost bald status has been challenging to say the least.  I was really hoping for a mass exodus that would leave me Doctor-Evil bald but instead we have had to use some interesting means to get there.  I have certain spots on my head that felt out entirely, I have some that seem to be holding on for some reason and then I have others that needed a little assistance. So M and B decided to give a lintroller a twirl - that's right, the same contraption you use to gather up errant pet hair. Miraculously it works! So to rid myself of Dalmatian spots and to achieve total smoothness, I have been lintrolling my head to nab those pesky spots. Below are a couple of photos, the first was last week and since then I am a bit more smooth :) 

My eyebrows will be falling out shortly, but I am prolonging their demise for as long as I can AND thanks to Latisse, my eyelashes seem to be holding strong. I am going to continue using it through transplant and see how it works.

So, this is a status update on me - the next thing I really have to do is go in on May 3 for my PET Scan and a battery of other tests over at Dana Farber.  As I mentioned before, please please think positive thoughts for CR and keep me in your prayers.

Enjoy your weekends everyone! 

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

Sweet ICEd T

Over the past few months you have all been riding shotgun as T has guided you through her treatment. Since you are now a captive audience I hope you have your seatbelt securely fastened because I am about to hijack the wheel. Don't tell T though, she doesn't even like side seat drivers.

I am B in the previous posts. Now, as a southern boy at heart there aren’t many things I love in the world more than sweet iced tea. In a sweltering summer it provides refreshment to even the driest of souls. Yet in the early days of a New England spring (currently 37 feels like 27) it can become frigidly cold and I’ve had my fair share over the past few days.

In anticipation of what was to come early Tuesday morning my Sweet T began to slowly brew. At first simmering while holding on to the last glimmer of sunlight that we will call fertility. By noon it had reached a full boil and was nearly scorched by five as we were told that the ICE would be added the next day. Wednesday arrives and ICE is added as was prescribed. This has been an eight hour process for the past three days. Lucky for me I am able to leave the confines of the pitcher (the Moakley Cancer Center) which at times can be overwhelming to even the sturdiest of minds. The T has endured 24 cumulative hours of ICE administrations as well as the emotional stress of Tuesday’s events. If that weren’t enough an evening chaser in the 2 oz. form that many of us enjoy socially must also be stomached. However, I don’t think a buzzard could choke this down without gagging. Even after being scorched, diluted with ICE and tainted with foreign substances the T has remained as sweet as ever.

As much as I love Sweet ICEd T, I think I will hold the ICE from now on.

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

Five O'Clock Shadow

Today I sat, lathered, drank, read and repeated, and repeated (and repeated)... I'm sure you get the point.  The tides, sands, sun and slides in the Bahamas have almost made me forget my worries (a few more Miami Vices and I should be getting closer), but then tonight I looked in the mirror and what I saw looking back at me was not my semi-tanned, freckled reflection staring back at me - but a five o'clock shadow!

Said 5o'CS belongs on handsome Italian men's faces not on female cancer patient's eyebrows -- or rather where they used to be!

That's right ladies and gents, my once inconspicuous, beautifully platinum eyebrows seem to be growing back (yay!) a much darker, almost black color (boo!!).  Since my hair on my head hasn't prescribed to the cliche your-hair-grows-back-thicker-and-a-different-color mantra, I didn't think I was going to be subjected to its wrath.  Why, with my luck, did I ever believe that I would be exempt?

I guess all I have to look forward to now is losing my new darker brows to the friendly "chemotherapy induced alopecia" and looking like that battered and abused drunk college kid (see blog post "Thank Goodness for Blondes")

Well it's off for more aloe lathering and bed...

xoxo
T

Super Symptoms

Hey all-
I can't even begin to explain how obnoxious chemo is - considering the following: losing at least 12 inches of very thick hair, all of my pretty blonde eyebrows, my long long eyelashes, packing on 20+ pounds, losing all of my energy (but none of the sass) and not knowing if I will ever be able to be someone's biological mother you wouldn't think it could get worse.  Well as I have learned over the past few days - it can always get worse.

Recently I have been experiencing extreme foot numbness and bizarre skin problems.  About 6 weeks ago I noticed that when skiing my feet would go entirely to sleep.  I only wish I could say it was like the you've-crossed-your-legs-for-too-long kind of sleep but this was the kind of can't-feel-the-feet-at-all kind of sleep. Then the numbness progressed just from skiing to most forms of cardio.  Finally after many meetings they are attributing this lovely symptom to the Vinblastine (V of ABVD). Apparently this symptom is temporary and should dissipate with time.  Let me tell you, it couldn't be soon enough.

Then on top of my feet being asleep, I have this awesome condition that the dermatologist is chalking up to "sensitive skin" that makes my skin super hot, itchy and occasionally develop bumps.  Please, you really need to harness your jealousy right now.  Apparently my condition is so NOT serious that today's dermatologist brought in 4 students to show them what "fine" skin looked like.

Oh well, hopefully the Bahamas will bring some joy and the pina coladas will numb my body in an un-Vinblastine side effect kind of way :)

T

What Happened to Easy Decisions?

I am still in such shock that all this is happening again - that my body is still filled with chemo and I have to make a huge decision as to where I want to go to put so much chemo back in my system that it kills my entire system. Such high doses that they have to rebuild my bone marrow, one stem cell at a time.

Besides the fact that this will be time consuming, has painful side effects and can be very dangerous with a heightened risk of infection, it can also ruin my chances of ever having my own children.

B and I met with a doctor last week to discuss our options for a family we can't even fathom having right now. The standard options for IVF might not be an option for us because our doctor hasn't encountered a patient in my position.  It seems to be the perfect storm almost: ovarian suppression for six months, four weeks out of chemo and having to go back into treatment in less than six months. These are all factors that Dr. T is concerned could cause problems for the "offspring" in the future.

Even larger than that, he is concerned about my health: how long do I have to wait? Can I afford to wait a few more months before I even start this next regimen?  

On top of these two questions, I'm not sure how I feel giving up my chances to be a mom to get this whole cancer thing over with with sooner.

So tomorrow I go back in for my first round of testing to see where we stand. Keep your fingers crossed that the horizon isn't too bleak.

xoxo

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

Thank God For "Lasts"

Chemo is finally coming to a close everyone - in eight days I will be finished with my last chemo treatment!! I know I said in my post the other day how shocked I am that it is already here but I just really can't believe it.

I am finally to the point where I am doing the last of things - I had my last Lupron shot a few weeks ago and my last Neulasta shot on Wednesday. Thank god for no more hot flashes and bone pain!

The next few weeks will be pretty packed I feel. I will be in the clinic on Monday and Tuesday of next week.  I then see my primary care doctor for a check-in on Friday, February 5.

THEN on February 11, I go over to Dana Farber to meet with another Oncologist to hear her opinion on whether or not I should go through radiation.  Sometime after my meeting at Dana Farber I will have my port removed, have another PET Scan and make a final decision on radiation.

I will keep all of you posted as to what happens, but in the meantime, please pray for good health days :)

Ode to Blue Cross

Oh Blue Cross Customer Service how I heart thee...

Thank you for standing beside me, letting me sit on hold for hours on end, as we battle together our dear friends at BMC Billing.

Why is it that a single medical bill I receive can't be correct? I kid you not that the stack of "Do not pay, refuting" is larger than the "Ok to Pay" pile.  Do we as Cancer patients seem so unassuming and wearied that the people in the billing offices think they can pull the wool over our eyes and have us pony up triple of what we owe?

While I'm sure you think I am exaggerating about this, I'm not. The last time I was on the phone with customer service we refuted six bills that had I forked over the money I would have paid $1,300 to BMC that was entirely covered by insurance!

So this post is for you, customer service representative. You save me money, one day at a time.

Lucky Six?

Today is the start of cycle six! While the past 20 weeks seem to have drug on, I am surprised this morning that I am about to leave the house for the start of my last cycle.

Today will be a long one because of yesterday being closed for MLK day - but hopefully all will go well and I won't get too sick at the clinic.

Love you all. More to come soon.

Thank Goodness For Blondes

So it is official - I think I have approximately 10 eyebrow hairs left!  I suppose the silver lining to this bizarre and slightly disconcerting fact is that you can't really notice a difference :)

Thank goodness for blonde hair - it has totally allowed me to ride out this very fun and exciting time with relative to no pain.  I can only imagine the trauma my dark haired friends had to go through when they began embarking on a similar fate... the images I keep coming up with are flashes of college-aged movies where the drunk kid gets his eyebrows shaved for passing out too early - and then subsequently looks foolish for the rest of the movie.

While my remaining 10 hairs are holding strong, amidst the mineral powder and Chanel mascara, I look forward to treatment 10 tomorrow. You never know, maybe my eyebrows will make a comeback like my hair.

Happy Monday everyone :)