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