Bad news bears.

After a quick check up at DF, for a PET/CT scan to assure that the Doxil did it's job, we were a little surprised by what the scan showed.

Unfortunately, after only a month off treatment -- I have lots of increase with more nodes, and disease above and below the diaphragm yet again, with multiple nodes ranging from 1-3.5 cm in diameter. I expected some increase, but not quite as quickly, as my disease is progressing...

So, alas, my fellow friends and family -- I will be returning to you all, and writing a little sooner than anticipated. During October I will be focused on finding a new trial (most likely in NY), and figuring out once again how to juggle life, class, internship, friends, and treatment.

Most likely the first week or two of November, I will begin somewhere, with something. So, stay tuned.


For now, I'm going to enjoy the next six weeks as best as I can.  I can say, I am damn lucky, though on several accounts:

1) By the time I start a new treatment, I will have three months off from any drugs. That is a 1/4 of a year, and had an A-mazing time at that. I am so grateful that I was able to rebuild my muscle mass, find yoga, and get myself and my energy started up to enter in this new treatment.

2) There are a lot more options now, then there were last fall -- clinical trial wise. I am always, so, so grateful for choices and options.

3). My internship, supervisors, classes, staff, and peers are being amazing about supporting me through this next trial, while I attempt a 25 hour internship, four classes, a social life, and treatments. How lucky am I to be surrounded by people who understand, and help?

4). I'm alive. I'm here. I'm helping. I'm doing good work. And in general, I haven't been this happy in a while, now that I am finally back in the field, being with kids, and sucking all that i can out of each and everyday.


I know some might be disappointed by this news, as we did think I would be able to take off till mid/end of December. But, hey, at least I got some time off, and at least I'm here, with options in front of me, enjoying my life. And for all of this, I am grateful.

If time allows, please visit Adrienne's blog again (post below) to continue to send prayers, positive thoughts, and warm, comforting vibes to her and Alison as they are fighting tooth and nail for A's counts to come up, and chemo to begin working on these tumors.

Thinking of you ladies - everyday.
Thinking of all of you, lots.
Hope everyone is doing well.

Signing off till late October,

B

Can I get a 'hell yeah?'

First, I just want to say -- I LOVE sharing wonderful news with all of my family and friends. But, this does not mean I am naive of how short-lived this good news can be, nor the fact that a lot of my fellow warriors are still in the trenches themselves. Before I begin my own update, I just wanted to take a moment to send some love to four hodgkin's survivors who have supported me in some form over the last few years, who are still facing some battles (however, are totally finding their inner strength to keep moving forward). If you have a moment today, please visit these fellow warriors' blogs:

* Adrienne who is having difficulty with pain management, and looking for new treatment as she proceeds down the clinical trials track, please send her love and pain-free positive thoughts.

* Hillary, who recently had a biopsy done after her second transplant, which revealed her cancer has returned and is now starting another treatment protocol. Please send her words of encouragement as she prepared to undergo another treatment plan.

* Chris, who recently relapsed after his tandem SCT and is starting the SGN-35 Trial today. Here's to a smooth transition Chris, with minimal side effects.

* And Eric, who has kicked the Hodge to the curb, but doctors are suspicious of him now having a blood disorder (aplastic anemia) in which he is now receiving treatment (ATG) for -- and experiencing not-so-fun side effects. Please leave a comment for Eric and his family and they are now battling another disease..

Sending love to all of you...

-----

So... onto the Bekah update! I received a CT scan yesterday after just barely two cycles of Doxil. And the reports, came back wonderful! The Doxil is working! Which is cause for celebration. To break it down for you, I have three major tumors in my body (the other two are small outside spleen lesions, below 1cm in diameter) that were managed throughout the last year. These nodes shrunk... as the evidence is all in the numbers :) My lymph nodes are measured by centimeters. The numbers in Green are from my May scan, the numbers in PUPRLE are from yesterday's (August) scan.

Portacaval lymph node : 1.8 x1.7cm verse 1.2 x 0.8cm

Mediastinal Node: 3.9 x 1.5 cm verse 1.8 x 1.3cm

Right paratrachael node: 3.4x1.8cm verse 2.1x1.6cm

As you can tell there are significant decreases in these nodes. After speaking with my oncologist he believes that after another two infusions (cycles of Doxil), that the nodes might be so small -- there might only be scar tissue left. Therefore, my next scan will be a CT and PET scan. The PET scan measures metabolic activity (cancer hot spots), so if those nodes do not light up -- that means, there is only scar tissue left. But, let's not get too ahead of ourselves.

This scan is great news! It means my disease is still very responsive towards treatment. Therefore, we will do two more infusions, and scan again to see where we are at the end of September. I will be meeting with the lovely and famous Dr. O'Conner next week, which coincidentally will be on the same day Adrienne and Alison will be there! So, we will be having a party in Dr O's office and then a meal somewhere in NY, as I can't wait to see the girls again! And they will get to meet the moms this time :)

During our meeting, I hope to gauge our next steps after Doxil. It appears if this treatment continues to do what it's doing -- I will get some time off after theis next set of infusions. Possibly 1-3 months off of treatment. No drugs, no chemo, no side effects for 1-3 months! How AMAZING is that?! And to discuss when to scan, again. Because, as I've said before -- most likely my disease is not curable. It will come and go, for years on end. Now we have to balance when to treat and when not to treat. And, how much time we allow my disease to grow back again before we put a next set of treatments in place. In other good news... though, this means full steam ahead with three classes and a fall internship starting in late August.

However, for NOW. I get to celebrate. The treatment is working! The cancer is shrinking! and I am feeling great! Right after I got my scan news, I seized the day and bought cheap Jason Mraz tickets and dragged Amy and Mandy out with me to celebrate, right on the water, at an outside venue in Boston, with beers in hand...

It was a great night -- and yet again, I could not stop smiling :)

Again, I can't thank you all enough for your words of support and love these last two months, with the new adjustment of treatment. I hope you take my good news, and celebrate this in your life as well! As you all have contributed so much to my happiness too :)

Cheers!

Sending tons of Love,

Bekah =)

Smooth sailing...

Hey all -- Still here =)

Treatment has been uneventful thus far(thank you, all higher beings up there!). However, I've had a cold for the last three of four weeks, as my neutrophils kind of bottomed out a bit more than we wanted, after the first infusion. But, the cold has honestly been more irritating than harmful. I've been coughing up a storm through dinner conversations and classes -- and feel horrible about it. But, I've gotten through my July weekend classes just fine... and have been enjoying time with friends, and a new found love of Dahn Yoga.

I was able to drive myself to and from chemo during this infusion, with no rough side effects to speak of. So far -- very smooth sailing. I've finally gotten my cough/sinus/congestion under control from anti-biotics, and other sinus relievers. And, was able to enjoy a weekend without class, great college friends in the city.... and tons of sunshine!

As for the medical side of things. Some important appointments have been scheduled: A CT scan before my third infusion (to see if the Doxil is doing any damage to the cancer). As well as an appointment/'check-in' with Dr. O'Conner (Hodgkin's specialist in NY), to review what I've been through this year, and see what else is out there for future treatments. This will all take place before a-hopeful third infusion of Doxil on August 11th.

But mostly, I am enjoying the slow & calmness of summer, before my fall kicks into gear mid-august with my internship, and classes to follow in september. Thank you again, to family and friends who have called, sent words of support, FLOWERS ;) , and just tons of love and questions my way to see how I am doing. I appreciate every single one of you. And, just could never thank you all enough to help me adjust to this new treatment.

Here's to all of you, for making me smile... so wide.

Sending Love,

B

Thank you, Doxil.

After Tuesday's infusion, I layed low for a few days. But, to be completely honest it was a painless chemo and I was up and at 'em again this weekend, celebrating the 4th -- just like everyone else =)

I don't want to jinx this treatment -- however, I think you can tell how I tolerated this chemo only a few days after my infusion on Tuesday. So, here I am with my beautiful friends Amy and Mandy -- we got a beautiful beach day and fireworks in at Mandy's Beach house in Rhode Island. It was a gorgeous weekend.

Here's to normalcy, despite treatment!

Thank you for the calls, emails, and words of support and concern.

And thank you Doxil, for being so kind.

Next treatment: July 21st.

Sending Love,

B

Blue eyes, you're the secret I keep..

It's all in the eyes. For most cancer patients. For me, I can always tell when my body is rebounding in some form or another by mine. The grey hues come out when my blood counts are down. And, like today, the blue-ness of feeling good, pierces through most pictures. I feel good. I feel ready.

In addition to my eyes, I'm at my peak weight -- 119 lbs today. Slowly, through biking I've been gaining some muscle. And, eating, eating, eating, to prepare my body for this next treatment.

Once again, I'm here.

Ready for battle.

Chemo begins tuesday morning, and a hopeful update for all of you, following.

Hopefully - with NO side effects!

b!

D is for Doxil (and lots of Damn hope!)

Now that my blog is private, it is easier to share specific details. And hope that you feel more safe leaving comments as well -- after teasing through many emails, I've only allowed two hundred individuals to view this site. So, here's the nitty gritty details of our next steps. (Disclaimer: This post contains lots of (medical information) and specifics, it can be overwhelming, take your time to read, think, and process -- I know it is a lot to throw at all of you, but felt you needed to know the details)

It was not easy heading back to Dana Farber after such freedom the last two weeks -- but, it's done now, and the plan of attack is in place.  Just to clear up some things. I was not formally thrown off the LBH589 trial -- but, would be come September.  Therefore, instead of starting a new treatment, new classes, and a new internship all in one month.  I took it upon myself to make the decision to start treatment now.  I have a light summer with classes, and lots of time.  And as some of you know I am the queen for horrible side effects. So, I decided (with my family) to discontinue the LBH, and begin Doxil as soon as possible.  This allows me two months to figure out when my blood counts will drop, how bad the fatigue is, what I need to take for nausea and GI issues, and anything else that decides to rear its ugly head. 

This is the right decision.  Others might try to squeeze out treatments and trials as far as possible -- but at this point in time, I need to have the control over my life, not my disease. During my first two treatments I allowed this disease to rule my life, my decisions, where I lived, and what I did. Now, I need to reverse it.

I have a life -- I am going to live my life, and THEN figure out how to fit the disease and treatment into my life. 

So, this Monday we discontinued the LBH. Which required testing on lungs, heart, blood, kidney function, and liver -- results show all normal! I even increased a bit on my heart levels -- as they are normalizing a bit more since transplant. All good news.

Now, the Doxil. 

Doxil is normally used for ovarian cancer -- but, there have been some research that suggests if Doxil is used directly after the LBH589 trial -- the lasting effects of the LBH plus the Doxil could contribute to a tumor response (decrease in tumor size).  This is what we are hoping for. 

The Doxil will be given on a twenty one day cycle. Meaning, I will have one, three- hour infusion. Then, I will have off for twenty days. This is considered cycle one. My first treatment will be Tuesday, June 30th. Treatment two will be July 21st. Treatment three will be August 11th. However, these dates are able to change due to side effects. Oh side effects! How I've missed you.

So, what are we actually looking at that can happen to me during this next treatment? Doxil is not considered that high in toxicity. I most likely will not lose my hair, or have tanked blood counts. But here are a list of what Dana Farber says I need to look out for:

Side effects of Doxil: 

*facial flushing, rashes on face

* low blood pressure

* dizziness

* severe tissue damage (if chemo leaks from infusion site)

* nausea (boooo!)

* vomiting 

* loss of appetite

* hairloss

* dry, itchy, skin

* GI issues

* blood/marrow suppression (low blood counts)

*mouth sores, mucositis 

And last and not least, hand and foot syndrome. The worst side effect that could occur, in my eyes. Hand and foot syndrome is the painful peeling of hands and feet, sometimes it will decrease within hours after an infusion -- others have had it on and off their entire treatments. Sometimes, lotion decreases the pain -- other times, people are unable to walk, use their hands, or even take hot showers due to the severity of discomfort, peeling, and pain. 

My oncologist says it is 'very unlikely' I will have hand and foot syndrome; however he has seen it. And, since I am the queen of side effects, I need to be prepared for all of this.  Not a pretty picture obviously, but something we have to do in hopes of beating back this disease.  In general, I could have NONE of these side effects, SOME of these side effects, or ALL of these side effects -- we won't know until the drugs hit me. (So cross those fingers!)

Now, to be honest with you about my cancer and its progression. None of this is alarming -- but, there are five nodes (tumors) we are looking at in my upper chest.  Although the LBH first, decreased them drastically, throughout each scan, they have been slowly, ever so slowly been growing.  At this point -- throughout the last year, I took it, because we are trying to manage my disease opposed to curing it.  The LBH gave me a great spring semester, and summer vacation.  And now, we hope this FDA approved drug (Doxil), will have more of an effect on these tumors.  All of them are smaller than 3x4 cm in diameter at this point, and none are in any major organs = all good things. :) 

The game plan: We will do three rounds (cycles) of Doxil, and then we will scan mid-August before my semester begins.  With this scan, there are two schools of thought -- the Doxil will work, or it will not. Most likely there will not be an inbetween. 

If it works, and my quality of life is good -- I will continue for three more cycles (total of six cycles). End somewhere around October, and then take a few months off of treatment.  

If it does not work, we think about adding two other drugs to the Doxil to make it a cocktail.  In this case we would add Gemzar and Navelbine.  Which is a normal protocal for Hodgkin's called GND -- this cocktail is used when other conditioning chemotherapies for stem cell transplant fail.  It probably isn't the prettiest thing ever -- but supposedly, people can have a quality of life on it. 

I know, this is a ton of information -- and I can't thank you all enough, for doing your homework on me :) and reading about these next steps.  I apologize if it is too much information as I know I have been been holding a lot of it back (due to my blog being public), But, now I have the opportunity to truly share the nitty gritty with you (which ain't too pretty sometimes), and rawness of the disease and future treatments, without fear that someone may stumble upon my treatment plan in my professional life.  

All in all, I am ready for this next step. I am ready to (hopefully) beat back this disease as much as possible. I had two glorious weeks away, am in love with my weekend summer classes so far, and am escaping to the New Jersey shore for the weekend... one last attempt of freedom before the infusions begin.  Most likely, for most patients, this drug hardly effects them -- and again, I hope this is true for me.  But, I like to prepare for the worst.  Only, time will tell. 

For now, I am enjoying each and every day. As much as possible. And living out each minute -- again, our goal for plan 'B' is quality of life. Not a cure. We are here to manage this chronic illness so I am able to continue my life.  And, that is what I am sticking to.  We hope the Doxil does a job on these small little tumors.  And we hope that the side effects do not drastically alter my quality of life. And that's all we can do... hope.  So if you have some time -- send some my way on the 30th =) I'd like to have extra, just in case.

hope is the thing with feathers

that perches in the soul,

and sings the tune -- without the words,

and never stops at all... 

Here's to plan B!

Sending tons of love,

B!

On the move!

I am back in Boston for just a quick weekend, and a few doctors visits early on in the week. But, wanted to share pictures of my two-week vacation stretching from the shores of Miami Florida to the Mountains of Kentucky.  I loved every, single minute of it. And was able to spend some quality time with my absolute favorite (out of state) family and friends. 

On to PA/NJ next week....!

South Beach with Chris, Alison, and Adrienne. My favorite hodgers :)

Orlando/Disney with Alecia!

Ladies of Neptune Beach Elementary

More of my favorite teachers!

My favorite kids from Neptune Beach Elementary

5th Grade Graduation!

Hiking in Kentucky with Darrel :)

As I've said, I'm only back in the bean till Tuesday -- then will be driving home for the first time since the holidays to see family and friends in Doylestown, PA. However, my quick visit packs a lot of punch. Besides starting my summer session this weekend (yes, lesley has a weekend format, during the summer - BRUTAL). I am hanging up the towel on the LBH, as my nodes have just progressed too far to continue this trial. 

To some, this is sad news. My first trial has ended that means 'Plan A' is complete. However, the LBH589 extended a lot further than I had anticipated, and I was able to muster almost an entire year of some good-quality of life months on it.  Monday and Tuesday I will be meeting with my oncologist team to set 'Plan B' into place. As I will be started a chemotherapy called Doxil which has already been FDA approved. This drug is suppose to have a synergetic affect (work in combination with the after effects of my last drug -- the LBH), and we are hopeful that this will beat back my disease before I enter my internship in the fall. 

The Doxil is one, three hour infusion every three weeks. I will be starting this treatment on June 29th. And am crossing everything I have, that I won't be plagued with horrible side effects. But! I will have more details once I meet with my favorite people at Dana Farber this week, and drill my doctors with even more questions.

The next two weeks I will not have one single drug in my body.  I can't really imagine what they even feels like after almost a straight year with the LBH in my system.  I plan to live deeply and suck all the marrow out of the next two weeks as best I can.  You should too! ;)

Sending Love to each and every one of you,

Bekah

Summer of Bekah!

Well, for me at least ;)

This is my official, summer vacation for the first time in three years.

I worked my little butt off this semester -- which definitely paid off. And LOVED every second of it. In fact, not seeing some of my favorite future-therapists in classes these last two weeks, has left my brain much less stimulated (miss you ladies!). 

However! Now is time for fun in the sun.  This afternoon I am high tailing it down to Miami, FL to meet up with two beautiful women, Adrienne and Alison. All in all this is a MUCH overdue visit with two of my favorite people who continue to fight this disease, just as I do.  After some R&R with the girls, I'll then be driving to lovely, Orlando for a day in Disney with friends.  

And THEN, after two and a half years, I'm returning to good old Jacksonville, Florida. My kids (who I taught two years ago) are graduating elementary school next weekend, and with it being my last time before they all part to separate middle schools, I wanted to give them one last hug.  So, I'll be seeing old co-workers, parents, and students.  I'm sure it'll all be very, very, bittersweet. But totally worth it. 

After my time in Florida, I head back to the bean for a quick weekend class..

and then, will spend a little over a week in PA visiting the moms -- spending some time at the Jersey shore with my family, and basking in the glory of summer. 

Although I'm looking forward to my summer classes turning up the heat in late June. I am ready to be a beach bum for a few weeks. And see some of my favorite faces. 

As for the cancer talk -- some things are in the mix, to change treatments: it appears that I'll be ending the LBH clinical trial in the next month and starting Doxil up sooner than anticipated. However, all of that will be attended to, once I return from my vacation. Once again, if you would like to continue reading my blog, please click here, and read. 

For now! I am officially declaring -- this the 'Summer of Bekah' and I am going to enjoy every minute of it.  You should too. 

  Remember to hug the ones you love today, and everyday. 

Sending Love, love, love...

B!

--

(Please note: We lost another member of our hodge army this week, please stop over to the Parr's Blog, and leave a message, as Pat (James) passed away Tuesday afternoon, leaving behind his young wife, two year old son, Josh, and lots of family and friends who are grieving.)

One year old.

In a few short days (April 22nd) marks the one year anniversary of receiving back my stem cells, at Upenn Hospital. It's amazing, how fast a year flies by. In no way do I really want to reminisce about the good ol' times in the transplant ward. But, I do believe that it's important whether or not your transplant has failed or been successful. That, those transplant warriors, congratulate themselves -- if you're still alive, still fighting, no matter what you're a survivor.

And, all that matters. Is I'm still here. Failed transplant or not. In the grand scheme of things, one year old bekah is doing pretty well =)

So there are few things I must update with all of you...

1. I received my scans from last week. And, we are still in the 'stable' disease range. However, through most of this trial. There is one main node, in my upper chest (the first place, I always relapse, and the first node that showed up on the PET scan after transplant), that continues to grow millimeters. Everything is tiny. M&M size remember? There aren't alarm bells going off. We are still stable. The other nodes, have hardly moved in any direction on the 15 mgs of LBH. However, if this one node continues to go at the pace it is -- in progression. My estimate is that I will be thrown off the trial in September. And, we will move to the next drug of choice: Doxil.

Am I upset? I obviously wish I could continue this trial for the rest of my life considering the quality of life I have at the moment. However, this trial has lasted me an entire year. A lot better than I expected.

Is this for sure? Absolutely not. Recently, in I informed most of you that I asked for more chemotherapy. We increased my dose from 15mgs to 20 mgs. This scan did not show any of the results from this dose increase. Since, I had only changed my treatment, less than a week before the scan.

So it could reduce that one node on the 20 mgs? Definitely. The last time I was on 20 mgs, my plateletes and blood counts were bottoming out. I could hardly stay on the 20, and we thought for sure they would throw me off the trial, since my body was not strong enough. But! i've been on the 20 mgs of LBH for about two and a half weeks now. And, as of this morning. My blood counts (after taking a small hit last week), are slowly coming back up. Which means, we might get a full cycle without any holds, or interruptions. Which could definitely be helpful in reducing this one node.

So, the worst case scenario? I have an incredible summer on the LBH, as it is holding the cancer at bay, and not allowing it to spread like wild fire. Take summer classes, enjoy a SUMMER (which I haven't experienced in about three years), and get a tan. Then, we most likely will get a scan in August, and change to Doxil Chemotherapy.

Best case scenario? The 20mgs, does some damage. And, we ride this horse until the cows come home. =)

Most likely though, we will prepare for the change in treatment, for this fall. Which is fine.

2) My life!
Things have been great on the school front, I've accepted my clinical site internship from Sept-May of next year. I will be working with children ranging from 5-18 years old, doing therapy with child witnesses/victims of Domestic Violence, counseling young women in rape crisis, helping out with a teen dating curriculum for middle schoolers, and group therapy with populations of children who have been sexually assaulted, witnessing, or other forms of trauma.

It's going to be the most rewarding experience I've ever done. But, after two years of waiting for the opportunity to work with kids again, I am more than ready. So, internship + classes + chemo = busy year, next year. But, I am incredibly pumped for it to begin.

In addition, my 'overload' semester is almost complete. As, I only have three weeks left until I can see the light at the end of the tunnel. And have a few weeks off before I lock myself in the library, for summer classes.

3.) The blog -- which is where I need your help.
As my program intensifies, and I begin to have my own clients. It appears that the internet footsteps I am leaving behind, might not be the best approach. I want to help. Obviously, for other young adults going through this period of their lives, individuals with chronic caner, or those that are entering trials that I have information for. However, I am struggling with the reality that this can easily be found. And, I would not want supervisors or clients, reviewing this site. On the flip side, I feel it's important to keep, for other survivors...

So, I guess, what I am asking is for your thoughts. If, this site is no longer helpful to others. It will be an easy decision. But, I'd love to hear what you all have to say.

4.) Hope you all are well. As Spring has FINALLY come to Boston today. I hope all of you are enjoying the sunshine, the start of baseball season, your friends, families, and your everyday lives.

Sending all of you tons and tons of love,
from boston,
and my heart.

<3 B

Too good to be true?

First, thank you all for being patient with me this last month. I personally, was able to take some time away from blogs, cancer information, boards, and some communication in general. And, basically basked in the glory of good blood counts, and visited friends and families during this holiday break. It was nice, to not have to think of my heath twenty-four/seven. And, I just wanted to thank you all, for giving me that space.

For the first time, in a very, very long time. I had planned the next set of treatment (the Doxil, drug), since my platelets were not doing well the last few months. But, much to our surprise. In the last month, every time my levels were tested. My counts have slowly moved up. Today, we reached an all-time high of 115. Which is amazing. Not only are my counts holding, but they are slowly moving up. Which means, I can not get booted off the trial due to my blood levels anymore. (Hip-hip-horay!).

In addition, all of my other counts are going up -- which means, I feel great :)

So, it appears that this dose of drug. Is tolerable. Livable. and I'm having a wonderful, quality of life on it. So, why have I been hesitant to post this incredible news?

My upcoming CT scan. On January 30th.

With the dose being this low (15mgs of LBH), the doctors are hesitant, about the outcome of this scan. With the higher dose, there was definite reduction of disease. But, with this low of a dose, it appears, no one knows, really what the outcome will be. Will this low dosage, be able to keep the cancer at bay? Or are only the higher doses of LBH the ones that have the ability to reduce my disease? So, we will see.

For now, everything is moving in the right direction again. My program started a few weeks ago, I absolutely LOVE what I have gotten myself into ;) My orientation was a-mazing. I met some incredible people, and professors. And, am pleased that I made this jump into a new professional direction. My counts are great. My energy is decent. My smile, is usually pasted on and REAL 95% of the time. So, I'm sure you can all understand why I am a little skeptical, of this scan.

My ducks, once again, are all in a row. And, although, we are prepared to change treatment, if the scan shows progression. MY GOD. wouldn't it be nice, if these last two months could continue throughout my semester?

To just have stable disease. Just seems, too good, to be true. With, everything else. 'Working' in my life. But, we will just have to see. Again, I wanted to thank you, thank you, all. For, your voices of concern this last month or two. It's been so nice, to feel normal, for a bit. And, take some distance, when I can. For now, we once again will prepare for the worst (progression of disease), but hope for the best (stable disease).

And, no matter the outcome, just be aware. That I am so incredibly thankful. I had some flawless weeks, of normalcy, happiness, and lots of smiles with friends, family, and my education.

Sending Love,

B

You bounce.

Yesterday was the first snow in Boston. It was light. But, still, the first snow seems the sweetest here. So innocent, perfect, signals the holidays are coming. Finals are here for the Boston area. Change for the new year. Anyway, it was sweet. Ask me again in another month, I'll probably have different thoughts... but for now, I enjoyed it.

As for me, I'm back. I've dusted myself off, and have bounced back. It's a new week. And I feel great, physically. Since I've been in a 'drug holding pattern' for six days. It's amazing how fast my body feels, once I'm off the drug for a few days. And that usually translates into feeling amazing, emotionally. When my counts are low, I am low. When my counts are great, I feel great. It's a shame most of the drugs I will be receiving in the next few years will most likely drop my blood levels. But, no complaining at the moment - they're keeping me alive.

This week, today actually, I will go in and receive my blood tests. And begin my 15mgs of LBH. This will continue for two more weeks, until I get tested again. Here is to hoping, that my platelets will NOT drop so low. If they balance out, on 15 (which is highly unlikely, says most of the doctors). we could possibly continue this trial for another month.

But, we will take it a day at a time.

My CT from last week revealed some good news; however, even though the preliminary report showed 'stable' disease. It appears, since my tumors are so tiny (imagine m&m size tumors), that they did shrink. There was reduction, in what is left in my body. So, we are very happy with that news. There are about 3-4, tiny, tiny nodes. That we're hoping will continue to decrease in size with this last dose of 15 mgs. The next plan of attack if my blood levels take a nose dive at the end of December, is to begin a drug called Doxil.

The LBH and Doxil, appear to have a synergestic effect. This means that because of what the LBH does to the cancer (destroy the enzymes that allow the cancer to multiply), the Doxil then works in combination with the lasting effects of the LBH. The Doxil is NOT a clinicial trial, it is a normal FDA approved drug that is suppose to have little to no side effects (ha. yeah right, which drug, have I received with no side effects!).

But for those that worry ;) This drug is not life threatening. It is given once, every three weeks. And it has been previously used with other drug agents for Breast Cancer, Ovarian Cancer, and relapsed Hodgkin's Lymphoma (usually it is in combination in the GND cocktail). But, with just the Doxil, with one agent, it is not suppose to be that toxic. And I can be treated with it from 6-10 months, depending on if my cancer is progressing or if there is reduction.

But, I hesitate to even post this next plan of attack. I just wanted to give you all a heads up of what my doctors, family, and I are thinking will take part in the next few weeks. For now, we will continue the LBH until they formally kick me off.

On the cancer front: if you have the time. Please visit my favorite warriors, as they are in the trenches of their own cancer battles.

Adrienne and Alison, have been an incredible support to me throughout the last two years. And, after losing one of their puppies last week to a virus, a scan revealed that Adrienne has progression of her disease. To say the least, it's been a rough few weeks for them. They will be visiting the lovely Doctor O'conner, in the next week, in which we all hope he has answers, for them to control this progression.

Also, fellow fighter, Eric, is going through his second allo-transplant. Kathy (his mother) has also been an amazing support to me in the last year. And they are both fighting with all their might for Eric to be cured.

And lastly, a new-hodge face, is Hillary, who also received LBH at Dana Farber. And is recovering from her allo-transplant.

If you have time, leave some love for these individuals.
Also wanted to thank you all, for your kind thoughts last week, emails and phone calls. You will never know how much all of your support, carries me through my hard days...

Hoping you all, take hold of your good days.
Drink lots of fluids, and enjoy your time with family and friends as we approach the new year.

Sending Love,

B