Hello October!

October brings crisp fall days, boots, pumpkin spice lattes, big sweaters, apple picking, hay rides, and thoughts of Adrienne..

This morning started off with thinking about one of the toughest, bravest warriors and her mother, Adrienne and Alison.  Adrienne survived with HL for over thirteen years, and is probably one of the primary reasons why I, and so many other warriors are alive today.  She showed us it was possible to live with this disease as a chronic illness and still achieve your life goals.  Today marks three years since Adrienne's passing, and her presence continues to impact my life and my ability to continue this lifestyle -- just as she did.  So, today we remember Adrienne and also send love to her entire family, especially her mother Alison, who has shares/d invaluable experiences and information to help other cancer patients in this journey. Today, we remember Adrienne.

Without Adrienne and Alison, I wouldn't have met with Dr. O'connor today -- the man and my oncology team that has kept me alive for almost six years with this illness.  It felt almost fitting that Dr. O, Ellen, and I of all days, were within the same four walls.

This meeting/check-up consisted of discussing these rare and intense side effects that have mostly subsided since decreasing my dose of Revlimid from 20mgs to 10mgs.  At this point on the 10mgs I am left with the following:

Revlimid side effect (10mgs)s:

• Neuropathy.  We are treating this with Cymbalta.  At this point I am completely numb in my toes, the padding of my feet, as well as the tips of my fingers.  In addition to Cymbalta I will also be researching Acupressurists in the Bucks County area.  

• Pain levels.  My body-pain/aches have definitely decreased.  Instead of being at a seven on a one through ten scale, I'm now around a three.  Unfortunately still in pain, but better than before.  Taking IBprofin everyday is taking the edge away.  In addition, I have shooting pain about 5-6 hours after taking a dose of Revlimid within my upper chest (the reason for my hospitalization last week when we thought it was a blood clot), and when I take a very deep breath.  

         O'conner's hypothesis is that this is tumor lysis syndrome, a break down of cancer cells dying that  
         can cause intense pain where the tumors are located.  If this is a correct diagnosis than the pain
         will decrease over time as the tumor cells begin to die off, since there will not be a large disease
         burden.

• Hair thinning, I'm losing very few strands a day, but still when I wash my hair, I am losing hair.  Mentally this is never a positive thing for someone who's lost their hair several times, but I'm trying not to focus on it at the moment. 

My team and I have decided I will continue on the 10 mgs of Revlimid indefinitely if I can tolerate the pain and neuropathy or they subside over time.  In addition, I scheduled a port surgery to replace my old portacatch with a new power portacath so my tender arms never have to be touched again for  imaging/scans! Although it's never fun to get surgery, I am super excited to not have to endure anymore needle sticks, hours of waiting for a nurse to access a viable vein, or the bruising that comes from missing my veins time after time.  

This new port, we will be able to use for all of my scans, blood work, and anything else that needs a vein access.  Some twenty-eight year olds get a new car and are excited, I'm off to receive a new port-a-cath, and I seriously can't wait. Other positive news to relay is that I am back up to 122 pounds.  I thank everyone who sent over or dropped off food as it obviously stuck, and I am almost back to my normal weight, all good things! 

Lastly, if you would like to financially help in anyway, you live in the Bucks County/Philadelphia area and you would like to book a family, engagement or budoir professional photo shoot, my good and dear friend, Ms. Jillian Bauer, is running a special now through December 31st.  Please check her out as part of the proceeds are a contribution towards my medical/treatment costs.  Please click here for more details. 

Here's to October, the crispness of fall, and Adrienne.

Sending Love,

B! 

Adjusting to Revlimid

After a whole week on 10 mgs of Revlimid starting on the 11th of this month, I was sure we would be coasting on this treatment.  On the 15th, my oncology team pushed the drug dosage up to 20 mgs, and things were good for a few days...I even had enough energy to do yoga, and two physical therapy sessions and to top it off a trip to the beach.

Unfortunately, on Saturday morning I woke up with shooting pain in my chest, extending into my neck, back and throughout my left arm.  To add to it, I was having a ridiculously hard time breathing in deep -- and when I did, there was a substantial amount of pain.  Being a cancer patient, we have a higher risk of throwing  a blood clot, and these symptoms did not feel good, at all.  So off I went to the ER, and was admitted to the hospital to run tests, a VQ and a CT, which luckily resulted in positive results, my lungs were clear and there were no clots to be seen. 

The ER and hospital visit took three times as long as it should of, and many arm sticks, due to not being able to access a vein, at the end of this visit my family, my partner and I all decided it is time for a new port.  The new ports you can access and use for CT's, mine at this point you cannot, and my veins in my arms have taken quite a beating over the last six years.  If you saw me today, and didn't know I was a cancer patient, I'd swear you'd think I was using heroin.  It's not a good look.  We are hoping to schedule surgery once this treatment becomes more stable. 

The muscular pain around my chest continued, the painful deep breathing continues, and after being released, new side effects/symptoms started to arise.  So far these have been side effects I've experienced on the 20 mgs of Revlimid:

My side effects of Revlimid:

• Mouth Sores
• GI issues
• Muscular cramps/spasms (primarily in feet, legs, hands)
• Fingers/Jaw locking
• Neuropathy 
• Due to jaw spasms and locking, slurring of some words
• Thinning of Hair
• Dry Mouth
• Back Pain
• Feet/Legs falling asleep within minutes
• Full body tension/pain/aching after sitting for more than an hour, and just to note I am usually incredibly pain tolerant but my muscles are so incredibly tender, that just a soft touch sends my body into a level of pain I haven't experienced since SGN

After two days in the hospital, and these symptoms on top of it, especially the joints locking and spasming/cramping which is a side effect of Revlimid that some patients do get, I have spent the last two days in bed battling my muscles.  And I am one tired pup, that still has one more week of these drugs to finish up before the end of my cycle.  Although mentally I know this will be the roughest part of the treatment, figuring out all the kinks and letting my body adjust, I am feeling a bit drained and exhausted.

Last night it was decided that I would decrease the drug back down to 10 mgs in hopes that some of these side effects lessen.  This morning I'm grateful that my hands are no longer cramping and locking anymore; however my neuropathy is consistent in my toes, and my calves continue to spasm and cramp anytime I'm not moving.

I am, with everything I have trying to be patient.  It has been a long time since I've been on a real drug, and a part of me almost forgot what it was like.  This will take some time and adjustments with medications. I'm hoping staying on the lower dose will be more of a relief -- time will tell.  

Here's to the lower dose being the key to a hopefully, very boring week,
and of course, a sweet New Year.

Sending Love and Light,

B. 

Can we be grateful and upset? Yes and yes.

If you would like to continue to read this blog once it is set to private in October, please click here and follow directions:

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One of the most difficult pieces of this disease is how everything can be ripped away in an instant.  Health for a twenty-eight year old woman in this body is never taken for granted, and every moment that I feel well I hope to goodness I utilize and soak up as much as possible. Everyday, every moment.

So when a set-back happens after fourteen months of wonderful health (which I never want to seem as though I'm complaining or kevetching because I am so grateful). To put it bluntly, I get pissed. I get upset. I get so frustrated. In most scenarios I look to the silver lining, I can find something beautiful in this amount of pain or look what I achieved in this amount of time... But, I've slowly (it's only taken six years right?) come to the realization that I can be grateful and still be upset.  Being upset or angry does not take away or negate how fortunate I feel.

I am so, so incredibly blessed not only with my support system, my resources, my education, my family, my intake of food and ability to access and afford physical support networks (gym, yoga studio).  I have the most amazing family one could ask for that continue to tell me to slow down, there is no rush, be where you are not where you think you should be. 

But, but, but... when all of this started in June/July I had no idea the amount of time I would be in pain, discomfort, and immobile.  I did not see this one coming -- and I usually do.  I struggle with thoughts of how angry or down am I allowed to get before I seem ungrateful or not appreciative of what I have?  So many other warriors are fighting harder battles, so many are no longer here.  A part of me fights with my inner soul about all of this.  Do I have a right as a six year veteran of cancer (who is living a semi-normal life) to be livid, grieve, and mourn the last three months?  Do I have a right after I worked extremely hard at school looking forward to a full-time job to kevetch that I may only be able to get a part-time job, and that is probably after two more months of recovery?  Do I have that right? And does that take away from understanding that I still appreciate my time here -- no matter the pain or discomfort.

These last three months, I really questioned myself.  Where should I be at twenty-eight? Where should any of us be? Why is that the question though, why are we setting ourselves up for another failure.  When I asked myself where I should be, I really should be focusing on where I am.  Today, I can get up. Today, I can do some yoga. Today, I get to see good friends. Will I get to tomorrow? eventually. But, today is today.

For all the ups and downs that have surfaced this summer I do have to say my friends are some of the outstanding, beautiful, just down right amazing people in the world.  I surround myself with people who lift me higher and along with my family, and my partner, I still say I would not be here without my pockets of friends throughout the east coast.  This weekend I had the pleasure of sitting down with one of them, an amazing young man who has his entire life in front of him and we discussed some of these issues.  Society, social media, Facebook -- the pressures of our culture. What is next? where do we go from here? What age do we need to be getting married and having kids without feeling like a failure?  Goodness the normal pressures of a twenty-something year old are sometimes too much to bare.  A part of me grieves for my own generation as well, at least I have a physical illness that puts some of these things into perspective. (Again, here I need to be grateful, because this is what I do, I am still working on it).

I've realized more and more that people should get to feel how they want to feel. So, why can't I? I feel the same pressures (at times) from our society, but mine is more focused on where I personally thought or think I should be professionally.  It's definitely not the same dynamic as a healthy twenty or thirty something year old, but this voice whispers in my ear from time to time. And this is where I found myself this summer.

Thinking:
- I need a full time job
- I need to get myself physically 100 percent in 2 weeks
- I need to move immediately now that I've completed my degree
- I need to be superwoman. I need to force my feelings and my thoughts in a direction that aren't there yet.

And truth be told, I wasn't. I am still 'working' on being here -- and not where I should be.  I took the time I needed, and still need to be heartbroken.  Here I was, jumping through another hoop, another setback, another few months of being sick and immobile.  And in my world, when I physically can't move, emotionally I feel backed up and immobile as well.  It's a horrible cycle, and eventually I come out of it stronger (like most of us) I bounce... eventually.

But this time, maybe because it took so long for this diagnosis to happen and we all struggled with what was really going on and the horrible unknown -- maybe, just maybe, I needed more time than I was willing to give myself.  Truthfully, I, and the rest of the cancer world never ever gives themselves enough time.  Somehow most of us out there have this mentality that we need to get through this fight right this second, we need to focus and be 'strong.'  That is the cancer culture, and if we aren't... some of us look inwards and see a failure.  An unfortunate attribute to this disease, especially when you don't feel it.

After months of refection and time it always seems to come back around to one major concept.  Be where you are.  Feel how you want. Can I be absolutely, incredibly grateful for the life that I have while others are struggling? Absolutely. It's definitely not the most pleasant feeling in the world, but I know when I am struggling and others are not, I am still very, very pleased and happy for those individuals.  My anger I've realized, or sadness at some times, does not take away from anyone else's pleasure.  And, it does not take away from mine.

I am not one single emotion or dimension, I am dynamic, I have depth, we all do.  So allowing this anger and frustration to surface, be dealt with, reflected upon, and felt I've realized can only help me.  I get to be where I need to be that day, pissed off at the world, or overwhelmed with the beauty of my life.  And I get to struggle and still feel loved, appreciated, and one of the luckiest woman in the world.  I get to feel however I want to feel -- It's just nice that I've started allowing myself to do it.

Here's to being where you are, today.

Sending Love and Light,

B.
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Cancer news: Started Revlimid at 10mgs this week and bumped it up to 20mgs today, no side effects to speak of just yet. I've once again finished off another set of steroids -- so now we wait to see if the fevers return, or the Revlimid will force the disease back enough so I can continue to feel physically well.

Ebb and Flow...

As September awakens it will definitely be a huge transition month.  However in some ways, that is the life of a cancer patient.  Ebb and flow, push and pull -- finding the balance between the worlds we straddle. Before the latest news I was preparing/hoping for full time work, a move within the next few weeks, and tying up loose ends here in good old Doylestown, awaiting... some kind of movement into my professional life.

The goals are all still the same, but sometimes priorities have to be viewed differently and one must pause.  So here I am, doing just that.  Now that I am officially off the steroid load after four days of non-stop eating, and a hard, hard crash today.  I begin focus on yoga, action, peace, nourishment/food as much as possible to rid my body of the immobility that surrounded it throughout the last two months.  More than not though, I just wish my body would catch up with my mind -- here I am ready to be on the move, but a few other things need to transpire before I catapult my way into the future: whatever that may be.  

Fortunately, my "B" symptoms of night sweats and fevers have subsided due to the steroids.  And our hopes are obviously that they stay this way.  It appears with paper work in check I will start the Revlimid, also known as Lenalidomide (new drug of choice) on September 10th.  Most likely it will take 2-4 weeks for my body to regulate to see what I am capable of handling on a day to day routine and basis (work, exercise, side effects, ect).  This is the 'patient' part of being a cancer patient where I'd like to push the fast forward button -- but we all can't be so lucky. It's where my practice in this world, literally takes the most patience out of me...

My hope is that with the opening of Fall, I will find a position that suits my body, my needs, and that this small oral pill will not even conflict with the daily life I planned out for myself since graduation.  So here is hoping for new beginnings on September 10th... and a very, gentle, loving transition into Autumn. 

A few quick notes as we close down summer: 

• We are also taking food donations/drop and go meals throughout the next month to buff me up as I rebound, so please email me by clicking here if you're interested in contributing

•  If you would like to continue to read this blog, once it is private in October, please click here. 

• Lastly, a huge, huge thank you for all who contributed to our travels to Texas.  Again, if it weren't for each of you, I definitely would not be continuing treatment, and venturing into the fall with such high hopes.

above all else, e.e. cummings reminds us:

life (who never grows old) is 
always beautiful and that
nobody beautiful ever hurries


Sending Love and Light,

B. 

Dx: Cancer, Kidney Infection R/O: Everything else

PLEASE prepare for a long post, I've again promised a lot of updates to many people and want to supply as much information as possible so I don't have to continue to update through every phone call.  It makes my job so much easier when people read these posts so I thank you from the bottom of my heart for reading, and if you want to just get to the meat and potatoes (results and plans) of the post jump to the bulleted portion.  On another quick note, in about a month I will be making this blog private, if you would like to continue to read 'true beauty' please click here and read directions.

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First and foremost I would just like to thank you all once again for your unwavering support.  I continue to realize each time there is a bump in the road I suddenly have this army of individuals cheering for me, sending me love and positive vibes, and just being there.  It's an amazing, amazing feeling to not just be cared for by your inner circle of family and friends but by the HL community, and another entire extension of friends that I have met along my different paths... I become overwhelmed, and although I do not respond to each one of you I hope you all know that I hear you, I hear everything you write or say.

To also preface this post before some negative news, I would like to ensure everyone that although some of these new bumps in the road are not what we hoped for, it could not have come at a better time.  I just completed my Master's degree in July.  I ventured through a whole year of studies and internship and finally finished my degree. A degree where I've once again been blessed to be connected with a few amazing women who I know will call my life-long friends..

These symptoms occurred just as Rich and I were coming home from our amazing and life-changing vacation where I was in zero pain and able to push my body to some of my best physical capabilities... I am so thankful that my symptoms did not occur till the moment we started packing our bags for home.  We were able to totally suck the marrow out of that trip like no other, and I am so, so grateful for NJCASA, Kim and Joel for making this trip possible for me and Rich.  We would never have been able to experience such a trip without the generosity and kindness of incredible strangers and a beautiful organization such as NJCASA.

I'm also grateful that (some) things happen for a reason, that I haven't jumped into a position yet and now I have the time I need to have to recover from the last two months and prepare for what is to come before I start venturing into the working world.  To have time to mentally recharge myself and renourish my mind and body before I take these next steps.

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So what are the next steps? 
Here is a break down of what happened this week:

• Once I left O'connors office on Monday, he took me off all my medications except for Tylenol and Kytril (anti-nausua medications).  If there was an infection to be found by Thurs/Fri we needed to make it happen and being on antibiotics was not going to help that cause.

• I'm not sure why my symptoms shifted after this -- but they did, and I'm incredibly thankful that they happened this week, while I was in NYC and under O's care, and have the ability to see him twice in one week, now how many O patients can say that! :) 

• The symptom switch: Monday came with a huge surprise: my pain started decreasing.  After a miserable weekend of pain, all of a sudden poof --  they stopped completely.  It was such a relief; however, the trade off was 24/7 fevers low and high up to 102.2 some nights, and they kicked my ass. Even with Tylenol there wasn't much relief at times, but there was one afternoon Rich and I were able to have at least one lunch outside of the hotel and Hope Lodge. 

•  Along with fevers, came the sweating.  At first I couldn't differentiate if my sweating was due to the culmination of fevers happening towards the end of the day/night and they were just breaking.  Or if it was that classic B Hodgkin's symptom of "night sweats" by Wednesday night I was pretty convinced that these were night sweats and that this was being caused by the cancer.  However, we all tried to to keep an open mind until the Indium, WBC scan happened on Thurs/Friday.

• After a long, long day on Thursday and Friday with several appointments in and out of the hospital for this specific scan (taking blood, waiting four hours, reinfusing the blood with trackers, then scanning twice on Friday morning and an appointment with O'connor Friday afternoon, and more blood work), it was all done and we had the best answers that the team could come up with..

The Diagnosis: It was very obvious early in the summer I did have a Kidney infection with classic symptoms; however, with previously being on anti-bitotics for an UTI a culture would not be able to pick up on an infection.  Therefore, we conclude that there was an infection somewhere in my kidney area that took time and lots of treatment to kill, which looks like it (hopefully) subsided this week.  This led us to the fact that I had a differential diagnosis, and the next one was obviously the cancer.

We took a CT about a month ago, and there was not any progression; however I do and always had disease burden going into this trial.  Scan by scan, my tumors have grown by millimeters, but not enough to qualify as progression.  In addition our focus is always quality of life, which has continued well into 14 months of treatment on the EBV+ Trial. Again, I can not even begin to state how grateful I have been for these fourteen months. So, so grateful.

So, our conclusion.  I am a complex case, no one can deny that with a previous kidney disease in 2002, to almost six years of cancer, earning a Master's Degree, completing two internships -- and still kicking ass and looking cute doing it.  I mean really how many people can do that? ;) In the end, my body could just be tired of handling this disease burden and is ready for my tumors to shrink a bit more before these "B symptoms" (night sweats, fevers) die down.  Or it could have been the prefect storm: My EBV trial produces lots of inflammation, I had inflammation at one point during my Kidney Infection these past few months, and the cancer itself could all have combined to what we are looking at now.  We will never know, all we can do is take the pieces of the puzzle we do have and put them together to form a plan to shrink the cancer.

Our Plan: Unfortunately during this process I have dropped 10 lbs since June.  Way too much for me. Putting on weight is our number one goal and a BIG mental recovery.  Not knowing these last two months has been the worst form of torture for any kind of patient -- all of us know this, the unknown is the scariest part.  Now that we have a plan, I have one hundred times more secure and I can feel my spark turning into a flame again to push on, but after one straight month of scans, I need food, no doctors, and time to heal.

Step One: Therefore, O'connor has put me on steroids this accomplishes several things: Steroids cuts inflammation, it will cut the lymphoma temporarily. Steroids increases hunger (and crazy unwanted emotions!), in turn, I've been eating like a starving person these last two days, it's been incredible.  Steroids will give me time to recover physically and put on hopefully another five pounds before our next step: treatment.  Steroids will also cut the fevers and night sweats.  All in all a good first step.

Step Two: In two weeks we will start chemotherapy called Revlimid.  NOT a clinical trial (wahooo!) This is an approved drug for myelodysplastic syndrome, myeloma (cancer of the bone marrow) and now is being entered into the NHL and HL world for treatment.

This drug was previously known as Lenalidomide, that some women might be aware of in the 60's and 70's to be given to those in pregnancy and unfortunately their children ended up having major birth defects. Revlimid/Lenalidomide is in a class of medications called immunomodulatory agents. It works by helping 
the bone marrow to produce normal blood cells and by killing abnormal cells in the bone marrow.

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So kids, that is the plan for now.  I am fortunate that I have an amazing network of refractory HLers that have confirmed that this is a semi-normal treatment regimen.  Meaning that they are able to work full-time on it with minimal side effects.  For now we will take this next month or two and see how things shake out in hopes that I can take the next steps of my life as planned.  

Although I am exhausted and everyone is mentally drained, we have a plan.  And due to the lack of control with this disease, a plan is something very valuable to hold on to during these unknown times.  After Friday's appointment I feel much more mentally at ease and now know what I have to do: eat, eat, and eat before we start round 15.  

So what can you do? A LOT of people in the area have been asking just that.  Although everyone knows I'm pretty stubborn in allowing anyone to help, I'm budging on this one because I know how crucial it is.  Something that could be very useful to me would be a "drop and go meal."  If anyone out there enjoys to cook or would be willing to drop off a meal (and know I probably won't be up to chatting) but could just drop it on the doorstep, whether I am here or not and let me know when they'd like to drop it so someone can bring it in, it would be a huge, HUGE help.  

The best way to do this so I don't get ambushed with three baked zits in one week would be to email me. Let me know what you'd like to make and what day or time you'd like to drop it off.  I can email you back with my address and a confirmation.  In situations like this, it is always so wonderful to give two options (whether that be meals or times to drop off).  However in the end I am thankful no matter what time of day or what meal, and I will make it work.  Just to note though: your love and support is all I really need but for those who are INSISTENT :) on doing something for me, this would be much more beneficial in the long run for my body.

Okay Kids, that is about all for now.  Again, it has been a miserable two months to say the least.  But with 
a plan in place and steroids in my tummy I feel stronger already, a little crazy...

But still stronger...

Sending love and light
to each and every one of you,

xoxo,
B. 

Confusion

I know I have been promising a lot of individuals an update, or a call or text back.  Your support is incredibly overwhelming and comforting, and I truly appreciate every single one of you for either checking in with me or making it easier on me and bombarding Rich with those calls so I can focus on what needs to be taken care of...

Unfortunately Upenn Gyno/Urology had nothing to say about my case, Dr. Gracia who is very well known there took incredible care of me and we did some tests however everything showed up normal.  When you are sick and nothing shows up it can be quite frustrating as these symptoms have been on and off now for two months and... I am tired.  I think everyone is, to be honest.

After a lovely check-up but zero answers in the PA area, Rich and I came up to NYC on Sunday and I had an all day appointment with O'connor's team.  We started from Day One of Symptoms back in June and looked through every piece of imaging, all of my symptoms and blood work.  Again, everything normal.  Except for my not so lovely side effects and the fact that yes, I am a cancer patient. This leads O'connor and his team to two conclusions:

1) I may still have an infection, and so on Thursday we will do an Indium WBC Scan . This scan is a nuclear procedure in which white blood cells (mostlyneutrophils) are removed from the me (a bunch of blood) then they are tagged with the radioisotope Indium-111, and then injected intravenously back into me. The tagged leukocytes subsequently localize to areas of relatively new infection. So these areas will light up in even the most sensitive areas if there is an infection in the kidney, which obviously we are all hoping for, but at this point might not be likely.

2) It's my cancer. My disease burden has been low, and even though it would be a very difficult pill to swallow the truth is, nothing else is showing up on any scans or tests except my cancer (which is still stable).  My body after a year and a half just may not be able to handle this amount of disease consistently and so it could be acting out in these symptoms.  If the test on Thursday/Results Friday do not show any infection whatsoever in my body, we probably will conclude that it is my Hodgkin's, making it's appearance once again before I attempt to take huge steps in other directions (professionally and moving to a different area).  

In the end, no one seems to know what this is for sure which is confusing, frustrating, and obviously upsetting.  The EBV+ Trial has given me such an amazing quality of life, and to have to put that behind us will be heartbreaking.  However, I should not jump to any conclusions just yet, we are taking this a day and a test at a time.  So a day at a time it is, and I will attempt to keep everyone as updated as I can on the new happenings.  

Thank you for all the love and support,

Lots of Light,

B. 

The terrible, horrible, no-good, very bad summer.

I have been dreading writing this post, hoping this health "hiccup" would be just that; however, it has turned from one week to two months of pain and frustration.  Nothing, nothing compared to what some other warriors are going through, or even what I experienced years ago.  But after have a very healthy year, and my body suddenly caving in on me.  I am a bit heated over the subject.

Rich and I were fortunate enough to go on a trip in early June that was donated to us through NJCASA, we paid only a small sum of money for six whole days on the Big Island of Hawaii, it was picturesque and surreal.  Our days were filled with breakfasts on the beach, hiking up mountains, listening to stories of the natives who lived there, and trying every single local, hole in the wall, restaurant we could find.  We hiked over miles of lava rock to reside on pristine white beaches for entire days...carrying our flippers and snorkel gear just like it was a daily accessory.  It was paradise.

The last day of the trip on the way home, I started having abdominal pain -- nothing too bad, but not good either.  The pain is located in the tissue/muscle area on the right side of my abdomen, adjacent to my hip bone.  It comes and goes with the pain ranging from One to Seven.  Thinking nothing but something of it, I scheduled a doctor appointment, which eventually led to "you're fine, but go to the ER if it gets worse." Which led to... an ER visit, with fluids, and pain meds, and then the pain was gone.  This was the third week of June.

A week later, I had to put my precious pup Lilly down to sleep.  She was fourteen, and has very well been my partner in crime throughout all of my treatments, heartaches, achievements, lonely nights and celebrations.  Lil had been diagnosed with cancer six months prior and although I was told she had more time, I could tell the decline was happening.  On July 5th, I held her till our vet put her down.  Although I've had loss, my entire world was absolutely shaken by the void that was suddenly left in me.  I was so unprepared, and the days that followed were not some of my best.

In addition, during these weeks the HL community had another devastating blow as Shea, an 18 year old absolute beauty went into the hospital due to infections and quietly slipped away with her family surrounding her. The Anderluh's are in my constant thoughts, these losses are terribly heartbreaking.

During this time, my abdominal pain returned, along with kidney pain, with it's friends: nausea, vomiting, and high-grade fevers, and a weight loss of seven lbs.   Through these weeks, the weeks I prepared for, for so long in my education the last week of internship and last two weeks of class.  I could not even move off the bed or couch, and started going in for IV infusions of fluid, thinking that the loss of Lily, and not watching my intake of fluid/food was the perpetrator.  In the early weeks of July, I had to call out of too many obligations and responsibilities and I began to realize this was more than just the loss of my fur-love.

When the fevers began to gain control, and shakes and shivers were happening I finally called my team in NYC and met with them for an assessment and scans.  With my cancer being completely stable, we looked outside the box.  My symptoms were classic Pyelonephritis (Kidney infection), and right away I was put on IV antibiotics.  Although I felt well the first week on the meds, my cultures ended up revealing that I did not have any infection whatsoever, something that we were all confused and frustrated over.  If you do not know what you're treating, and you just go on antibiotics, in the end you are only temporarily treating the infection.  So, here we were at square one again, and my symptoms began roaring back.

At first, I thought this was just my body slowly recovering since I've obviously been heavily treated; however, without the culture begin positive it was of high concern that we were looking for another infection.  With days going by and weight dropping, I made the trip down to Texas (somehow) on August 8th for the EBV+ Trial.  Oddly enough I did not have fevers that day, and was administered the drug.  The plane ride home though had to be one of the most traumatic ones I've had. At lift off my shaking and shivers began and were uncontrollable, Rich and I had packed several blankets and even wrapping me up in a cocoon couldn't stop my convulsing body. Throughout the entire trip, Rich encased my body with his arms, held ice to my head when I started burning up/spiking fevers, and ordered too many tea's too count in which our flight attendant didn't seem to appreciate one bit.  As we got home, and I retrieved my thermometer, my body was just coming down from the shakes, and it was 101.6 -- I couldn't imagine what it had been on the plane.

The next morning, this past Friday I went into the Doylestown infusion room to receive fluids or any kind of supportive care.  This, in turn led to being admitted to Doylestown where the doctors although all admitted to my sickly face that "I was above their pay grade." Suggested I needed to go somewhere else after they had ordered every single test imaginable from CT's of the body and brain, MRI, IVP, Ultra Sounds, Echo's, Cultures, and more...

The result was there is none. We have ruled out specifically: kidney infection/stones, gallbladder/stones, appendix, cancer, brain/heart issues, obstructions/stones between bladder and kidney area, twisted or abnormal ovary movement, and many others... On paper my body looks immaculate and without infection.  However, I continue to have fevers, nausea, and some vomiting.  Although the Doylestown team did not find anything, Dr. O ordered IV antibiotics to make me comfortable at least so I could attempt to put on more weight and have running fluids.

In a word, I just feel defeated. Tomorrow I travel to Upenn to see a Urologist, since we first thought this was a kidney infection, maybe she has a different opinion on what's going on, after that, I will continue with oral antibiotics.  I am feeling 'okay' not great though. The abdominal pain resurfaced after I came home from the hospital this afternoon and it is raging within my stomach, it is a struggle to eat, and I feel so incredibly weak since I have really struggled to be active in anyway.

It has been a long two months, and although I am so grateful for finishing up school (with supervisors and professors being so understanding), and our vacation in June.  I am sitting here quite perplexed.  How is it possible that  two months ago I was hiking some of the rockiest trails in Hawaii, and now I can barely walk down a hallway without huffing and puffing? The unknown is certainly a scary place to be.

As always -- I am so thankful that I am still here, no matter how much pain or the "unknown" surrounds this body.

So today, to keep focus on that...I am grateful for:

• My ridiculous supportive partner who has watched this roller coaster first hand and will always break out in dance party mode for me to make me laugh
• My mommas, who yet again this team of women are always, always there advocating for me in and out of the hospital
• Everyone who has reached out wondering "where have you been?" it's nice knowing I have so many people in my corner, I am one lucky lady.
• Our vacation in paradise, I hang on to those moments of perfection while we are in and out of the hospitals these days.

As always, I'm sure we will find the answer somewhere -- I am just hoping it is sooner rather than later.

Sending Love,

B.

Privacy for Professional Reasons

Hello All,

I've come to the conclusion that I really miss writing... and being more honest and vulnerable about some of my experiences.  The last few months I definitely have been very careful about what I have written due to the fact that I am applying for jobs.  In turn, I have decided to set the blog to private once again -- at least until the job search is over.

If you would like to CONTINUE to read this blog when it is in it's private setting.  Please just send me an email with the title of Private please do not add anything else to the headline, as I don't want to miss anyone.  I have a listing of 400 people who are already on this private list, so before you send me an email CHECK to see if you can sign into your google account if you have made one, or if you have one.  If you were private before, it shouldn't be an issue now and you should not have to send me an email.

Again
Step One) email me at: RebekahFurey@mac.com
Step Two) Title it: Private

There's no need to write anything in the email, I only need email addresses to invite you to the private blog.  This way, I can continue writing my honest thoughts and discuss HL issues as well. 

Also, please, please if you could try not to  text or call and say "add me!" I'm overjoyed that individuals would like to continue reading this blog; however, for me to stay organized I really just need a list of email addresses.


Thank you all!

Sending Love,
B.

Desperate to get to Texas!

Calling all earth-angels:

We are in desperate need to get our butts to Texas!

Hello all of you beautiful people, this is a quick shout out to all of you for some help.  So I apologize that there is not a huge update at this time, but my partner and I are in a bit of a predicament.

Rich and I are desperate to get down to Houston, TX for my next infusion.  Unfortunately, I have been off my game a bit due to some health issues (unrelated to cancer, and all curable!) and have not booked our flights for this upcoming trip.  It is now obviously, very last minute, and we are scrambling for flights.

We need flights at anytime on August 8th from PHL or surrounding airports (another option is Newark) to Houston, TX.
And returning flights on August 9th from Houston, to our returning airport.  This flight must be after 3pm (right after my infusion).

Again, we are desperate and looking for anyone who knows anyone who could possibly donate Frequent Flier Miles. Unfortunately we are locked into these dates due to my specific infusion date, and Rich's work schedule. Please email at RebekahFurey@mac.com.

If you want to help, but do not have FF miles, please look to your right there is a PayPal account 'DONATE' button to Houston, TX treatments and any donations would be appreciated!

Sending love and so much thanks,

Bekah & Rich

Frames, they just move too fast.

Somehow it has become July, and life once again feels as though it is moving too fast.  Maybe it is because my health is so stable, and life (believe it or not) continues to get closer to the "normal" that all cancer survivors crave...

Nonetheless, I am usually completely on top of my treatment schedules, and this summer (when the liven' is easy...) I have been in a bit of denial that we need to make one more big push to Texas before the summer ends.  In turn, we are once again desperately asking for Donated Frequent Flyer miles in whatever capacity we can receive them, or forms of donations to our paypal account for hotel and food.

We are so incredibly thankful to the many, many individuals who have taken us to TX, most recently, it has been the wonderful Mr. Hank Becker who generously sent our butts down to Houston in early June, and the quick twenty-four hour trip went swimmingly.  So lots of love and thanks to you Hank!

So once again, (which I absolutely hate to do...) but I am asking if you or any family or friends you know of could possibly contribute two, one-way tickets OR two, round trip tickets.  We would be forever in debt and incredibly appreciative.  We are very flexible where we fly out from, either Philadelphia or Newark we are able to get to.  So please pass on the message if possible, and I thank all of you again for your on-going support and the ability to send me to Texas so I can receive this treatment.

In addition, I have been sending out resumes and interviewing for positions, SO, if you are unable to get onto this blog for any reason (which is when I set it to private), please just email me at: RebekahFurey@mac.com with an email title of "Privacy," so I can have your email address and then privately invite you.

Lastly, life in so many ways has been stable and calm.  And for that, I am so, so, deeply grateful.

Sending love to all of you,

B.

Time continues to fly...

If you are reading this you are quite aware that I've unfortunately had to set my blog to private settings.  This is just due to some professional privacy right now, and I apologize -- I am hoping by the fall I will be able to make this public once again.

Time has completely flown by, and somehow I find myself facing the beginning of June.  My grad program/internship ends at the end of July.  And I am hoping (sending out at least 50 resumes a week!) to nail down a job by the fall.  But lets bring you all up to date.

• The scans in Texas in May were stable -- we will continue with the EBV+ Trial, and I will fly down there at the end of June to receive my next dose!

• My disease and graduate school/graduation circumstances have been in several articles. Take a look!
• With being three credits shy in May (I finish my degree in July), my school would not allow me to participate in the May commencement, so article A came out: College Rigid on Cancer Patient's Request
• With publicity, an outpour of support, calls and emails from around the country, Chestnut Hill College then reversed their decision to let me walk, and article B came out: A College's Change of Heart
• In addition, the President of CHC also sent out a Press Release  to students, alumni, and every single person who composed an email to overturn this policy
• Then, Higher Ed Magazine got wind of Chestnut Hill College's rigid policy and lack of flexibility with students of disabilities/illness and came out with Article C: Philadelphia Student with Cancer Allowed to Attend Graduation
• And then... this happened :) 

In the end, I was able to walk with my class and not have to wait until May of 2013 to walk.  I receive my degree on July 25th of 2012.  And I could not be any happier!  Here's to small and large milestones, while still walking with cancer.

In other news, I just wanted to take a moment to send my love and support to the Lewis family.  Ms Carrie and Andrew Lewis have been a crucial part of the HL community, and recently Andrew has unfortunately relapsed after his auto-transplant and is now forced to be part of the cool kids club (refractory HLers).  If you could, please send positive vibes and strength as both Andrew and Carrie (who have been a huge support to me in my own battle!) as they navigate through the trenches of refractory treatment and trials.  I know they will appreciate your support.

Sending love to each and every one of you,
B!

Lighting the way.

Today has been a very reflective day.  Lots of introspection.  Lots of being in the present, yet past and future at the same time.  I'm a bit in love with days like these... looking back, being giddy about the future however scary or unprepared (or maybe prepared) I am for these next steps.

With all that has happened in the last few weeks between personal and professional obstacles, I feel that I am dancing to the final song at my own pity-party.  Maybe not pity party? But something close to it. Mulling over thoughts, so many thoughts.  But this morning as the clouds finally parted, literally, in Doylestown and the windows were opened for the first time in days, I am here.  Excited about what all of this has to hold, all of what I have experienced.

Recently there has been a rather huge debate if I would be allowed to walk during my graduation.  I am short one class (I complete this class in early July and receive my degree at that time).  And my school unfortunately has been unwilling to be flexible with a request to walk in May.  It is what it is... that is the mantra these days, and I am okay with this decision (finally).  However that does not take away the fact that I do receive this long, awaited masters degree in July.  A milestone I honestly never thought I would reach.

The last few weeks as individuals have been approaching me with those questions we all love, what are you doing next? Where are you going? Have you started applying for jobs? These questions have felt so taboo, so abnormal, so surreal.  The moments when I have been on this road before the rug has sneakily been slipped out from under my unstable feet.  The stop -- start -- stop -- start motion, the push -- pull -- push harder -- pull harder for your life tug of war has been so constant that within these moments of what are you doing next?  I am speechless (because the tugging has stopped, I am here, I am stable). However, if you know me well, you know that being speechless is incredibly uncharacteristic of who I am. And these next steps are usually some of my most awaited, anticipated and favorite pieces of my life.

I knew in high school where I would be for college, I knew before I graduated college where I would be working as a teacher, I knew when I was diagnosed where I would apply for Grad School since I was unable to work, and I knew when internships came around in both Boston and Doylestown for Grad school, the answers were clear.  I thrived in these moments of next steps.  I loved them, and secretly I still do -- it has just been so difficult to express them when there was such a fear that the stair case I was walking up could possibly crumble under me, at any point in time.

The last few weeks I have been completely stagnant.  Refusing to look at jobs, apartments, or areas I desire to reside in.  Ignoring the fact that I am approaching my last class of my degree, and focusing on all other things, except for what my next move would be.  Enjoying the present has been my saving grace, and I believe I have conditioned myself so much to appreciate the now, to be grateful in every moment, that the future, the excitement and anticipation of new challenges, opportunities, and a life never felt within reach.

But here we are,
and although I can't quite believe it --
It's here.

Today, and this week I finally started exhaling the present, the moments of open windows, sunshine, fresh laundry, a home cooked meal, being in the now and inhaled the possibility of next year. Inhaled the possibility of living in New Jersey, or New York, or Connecticut, inhaled the option of counseling children, college students or trauma survivors, inhaled the knowledge of new chapters, new adventures with my love, my family, my dear friends.  And inhaled the realization that ready or not, I am about to step into a world that I have awaited five long years for.

So it is days like these, my loves.  That inspire me to write, to record, to acknowledge that this was the moment so many of you have pushed, supported, and led me into.  It is the moment when you and I, myself especially, recondition myself from thinking:



look what I have overcome..
                                          to
look what I am about to do..




It is the ultimate, most beautiful, empowering thought --
and I am so overwhelmed and so grateful for it.

So, here is to days of reflection,
and to all of you
for lighting the way.

Love and light,
B.

Tides, they turn.

My amazing grandfather passed away two weeks ago -- and although I wrote about him quickly in my last post, goodness, I am struggling more with his loss than I ever anticipated.

Two years ago... when I looked like this....

I thought about death everyday. I was constantly in and out of the hospital, received hourly in-patient fluids, medications, and had very little to no quality of life.  Death for me, was so close in some ways.  I had processed what would happen if I passed, how I wanted people to remember me.  I told everyone that I loved how much and deeply I cared for them, and I let those at the hospital those terrible weeks that we weren't sure what my body would do anymore that I wanted a DNR on my chart.  My body was too weak, I had accepted what was coming -- or what I thought was coming.  And mentally, I had let go.

I replay that moment in my mind every so often, and truly processed it with close friends and supports.  And realized the day that I finally told my body it was okay to let go, it took that energy and somehow started fighting back.  It taught me as a Type A person, that I really could not control anything anymore and even with all the mental preparation, the possibility of a funeral, and feeling as though I could touch the end, somehow I am here today.

But for so long in the beginning of my journey, I was at the edge of that cliff.  Not knowing what treatment or how far my disease would progress to send me off and beyond.  Now, as I distance myself further and further from these moments, somehow.... Death has become scarier and grief has become different.  It is so hard to swallow, but as I look back on the last two weeks and how much my grandfather's death has affected me I realize I am no where close to the edge of that cliff, and because I'm no longer there anymore I now see that other people are walking closer, and it is in fact more painful than being there myself.

It felt easier somehow, easier and more secure and controllable if I was that person.  I was the one potentially leaving, I experienced glimmers of being in and out of consciousness, it was me.   As tides turn in our lives I realize only now that my grief and sense of death has drastically changed.

Never, do I wish for anyone to feel what I felt during those days two years ago.  But, never do I wish the deep pain of loss for those feeling healthy, knowing there might not be a reconnection with those lost in the near future.  I am grateful, but I am pained over what lenses I was staring through not too long ago and and over those that I am staring through now.

The tides have turned, and once again I learn to let go... to let go of the control, I so wish I still had.
And I'm sure the control, we all wish we had when it comes to losing a loved one.

Sending love and light to you and all of your loved ones,

B.

Pop, relaxing with me in the sunshine during his last days.. 

And our ships were sailing

I remember it well,
our ships were sailing... 
- d. rice


It has truly been a while.  There have been highs and lows; however, no news on this blog translates to normalcy with all the ups and downs.  Which is something to be so grateful for.  Each and every day of my life.


Rich and I, thanks to the coordination of Ms. Carol Hahn, Ms. Alayne Yonemoto, and the generous frequent flier miles from Mr. Steve McCollum and Ms. Cara Carpenito were able to have incredibly successful flights from PHL to the HOU area without a hitch.  We also ate delicious meals, and treated ourselves to a rodeo from all the amazing donations from the last three months of incredibly generous souls out there who have opened their wallets.  We are forever in debt to all of you, and again, I would not be having the quality of life I am experiencing now without your beautiful hearts.


Treatment went well as always.  And now we await a May scan date to see if we will continue this treatment throughout the summer.  I have now been on this specific trial for just about a year -- the longest that I have ever been on a successful treatment.  We obviously hope the results in May are positive ones.  And if so... we will continue our trips to Texas, to be among the cowboys.

Life besides treatment has been hectic.  Over the last two months, I've had some ridiculously difficult and ethically life challenging cases that have been incredible learning experiences,  I once again surpassed many doctors expectations and celebrated an amazing 28th birthday in FL with my three dearest friends,  thanks to my incredibly supportive and generous Aunt and Uncle.   Graduation is slowly upon us, as I've just registered for my final class of this program which will end mid-July.  My sweet, sweet grandfather who has been one of the very few male constants in my life recently passed and although our family is doing well, it heartbreaking to lose our glue that holds this family together.  And my Pop was just that man. So, life, continues to move.  As we continue to remember and think of the ones we love..

Throughout these times of reflection, I also continue to remember to hug the ones I love as often as possible.  And tell those who I adore that they mean the world to me, because they do.  In addition, I send my love and light to all of you and hope you are enjoying these days of sunshine, spring, and the changes that are amongst us.

Time away from the blog and the cancer world in general has been a healing one, so although I think of each of you often, and thank you for you checking-in with me.  Know, the less I write on here the more I am out enjoying a fairly 'normal' life, preparing for huge life changes: evolving from being a grad student to a hopeful working woman, moving towns, and lots of other transitions.




Life is good my friends, and I have all of you to thank for that.


Love and Light,


B. 

Endless amounts of thanks yous....

First, I apologize that this post has been so delayed.  Life, once again has taken a hold of me and I have been lost between internship, classes, cooking, working out, cheering on the SIXERS, seeing friends and spending time with my family and my partner.  I can't even begin to express how WONDERFUL it feels to have this 'normal' chaos of work, relationships, school, and a personal life.  So much better than complaining about cancer!

However, I truly would not be here experience what I do on a daily level, if it weren't for each of you, and each of those individuals who generously, and oh BOY do I mean generously contributed to these next three rounds of treatment.  My partner and I were not only shocked, but overwhelmed at the amount of individuals who stepped forward in all aspects of this treatment from LARGE donations in my Paypal account, to frequent flyer miles, and hotel time shares.  It was to say the least, the most beautiful form of kindness I have even been a part of.. and as I said, I was overwhelmed with a sense of love, and confidence from each of you, that this cause, this treatment IS worth it.  And truth be told, it is.

So, I want to take this time to greatly thank the woman of the hour who scheduled Rich and I to fly from PHL to HOU this first infusion round, the wonderful, the incredible Ms. Susie Laws.  This woman, did not even hesitate to donate her miles.  Not only was Susie selflessness to offer these miles, but she made our entire trip easier and the financial burden that had been put on our shoulders during these infusions completely diminished knowing that such kind souls as Susie, took the opportunity to help Rich and I.  So, my dearest Susie! I can never thank you enough for making this trip happen for Rich and I! I hope you realize how amazing of a woman you are, and we are so endlessly grateful for your kindness.  All my love to you, dear!

As for other amazing women, Ms. Jen Wilkens reached out to Ms. Linda Walsh, a kind soul, and from what I've heard a wonderful mom -- donated her hotel time share so Rich and I would be able to afford a Hotel close to Houston, and a very easily accessible location so we were able to wake up at a decent hour to then receive my infusion just minutes away. Linda, we are so grateful for such amazing kindness from strangers, and thank you from a very deep place in our hearts.

Lastly, obviously not least -- all of you, and I mean a TON of you, contributed gracious amounts of money to carry us through the next 4-5 months of treatment.  I wish I could send each of you a large bouquet of flowers or a big teddy bear to show you my thanks, but obviously that would be counterintuitive :) So here are a list of my biggest supporters who make MY life possible through their kindness...


Big, huge thanks to: Ms. Linda Davidson, Ms. Elaine Crouse, Ms. Shannon Tower, Mr. Patrick Cummings, Ms. Ruth Hendry, Rene Kegelman, Ms. Kaitlin Mallouk, Ms. Annette Armstrong, Ms. Jennifer Nelson, Ms. Patricia Hane, Ms. Sandra Bruce, Ms. Judy Kilty, Ms. Erin Mills, Mr. Stephen Distaso, Ms. Mindy Newman, Ms. Katy Cooper, Mr. Larry Lewis, Ms. Samantha McCauley, Mr. Ross Blumenthal, Mr. Charles Cavanaugh (who I am attempting to contact, so, Mr. C -- if you see this, please email me!), Ms. Barbara Bosworth, Ms. Daphna Brown, Ms. Roe Blumenthal, Ms. Liz Schroeder, Ms. Rachel Coulshed, Ms. Ashkan Rahmati, Ms. Jen Berry, and last but certainly not least the Crail Family!

I thank you, my good dear friends, acquaintances, fellow HL warriors, strangers whom I've never met, I thank all of you for making these treatments a reality for me, and to have the ability to bring a care giver with me to handle the stress and chaos of treatment.

I am forever in debt to all of you, and can honestly, never thank you all enough.
Just know, you are creating normalcy and life for someone who is living each moment as it is her last.
And I will continue to do that, not only for myself, but to honor those who have contributed to this treatment cause.

Next Round will happen in early March! And we are mentally and financially ready!
Sending Love and Light,

B.

Check-in, Texas Style!

Just wanted to write a quick note that the January treatment round is finally complete, and we are finally home from our travels.  I have many, many thanks to give from those who donated frequent flyer miles, to a hotel time-share, to paypal account for our pecan pie fund, and so much else!  My family, my partner, and I were overwhelmed at the amount of outreach and generosity and we sincerely could never thank you all enough.  Since, I am still catching my breath from receiving treatment yesterday morning, and flying out last night, I will be posting a LARGE thank you response in the next few days of those who were involved with making this treatment round happen.

For now, just know, we enjoyed 24 hours (and possibly 8 of those hours) outside in the warm weather, with great food, good company and a quick treatment.

Just wanted to let you all know though, we are home, safe and sound! And can never thank you all enough for sending me to Texas to receive this treatment.   Here's to a zero-side effect treatment, friends around the world, the best BBQ in the country, great pecan pie, health and normalcy! 

Sending light and love to all of you,

B!