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.