Tuesday, January 29, 2019

Waiting for the other shoe to drop . . .

As you may recall, it was exactly 2 weeks ago today that I met with my Orthopedic Oncologist for my 10-year CT scans.  It was then that they first identified my pelvic tumor.  At the time, my doctor thought that treatment would likely involve chemo, radiation, and surgery, but that I should be able to retain a fairly "functional" right leg.  An MRI was then ordered to get a closer look.

Having had this closer look, however, my Orthopedic Oncologist laid out the following 3 primary determinants of surgery type:
  1. Sciatic nerve
  2. Femoral nerve
  3. Hip stability
One must have 2 out of these 3 to make the leg worth saving.  For me, the ruling is as follows:
  1. Sciatic nerve -- not OK, as it is totally involved with the tumor
  2. Femoral nerve -- OK
  3. Hip stability -- could go either way, but leaning to not OK since tumor approaches the hip.  Final judgement awaits chemo results.
If indeed there are 2 or more "strikes", surgery would involve a Hemipelvectomy (extended) through the sacrum.  Now that's literally the "other shoe dropping"!

Yes, a lot can change in 2 weeks . . . and I'm still trying to wrap my head around this latest news.  For now though, life goes on and I must find the mental fortitude to focus on the here and now rather than the "what ifs" down the road.

Saturday, January 26, 2019

Hope on the Horizon: An Unofficial Treatment Plan

Having not heard anything yet from Emory Oncology by Friday afternoon (and growing more nervous by the minute), I thought I might attempt to reach out to my former Oncologist from 10 1/2 years ago.  Since we are friends on Facebook, I figured what the heck, why not let her know my latest status.  When she was my doctor, she actively encouraged such correspondence.  I never abused the privilege.

I contacted her through FB Messenger, informing her that I was seeking a second opinion regarding treatment for recurrence of High Grade Myxoid Liposarcoma in my pelvic area.  She was so kind and gave me her phone number and asked me to call her that evening.

Based upon that conversation, here's the treatment plan that she laid out:

1) Start with chemotherapy (mid February - June) -- 6 rounds (3 week cycles) of high dose Yondelis (a relatively new chemo agent approved by the FDA back in 2015).  Apparently Yondelis does a good job of shrinking Myxoid Liposarcomas.  Unlike 10 1/2 years ago when I was in the hospital for 5 days being infused, Yondelis is given over 24 hours via chemo backpack.  This means you get "hooked up" one day, watched for a few hours, sent home, and then return the next day for IV removal and Neulasta treatment (to better help your body make white blood cells).  Overall, the toxicity of Yondelis vs. what I had a decade ago is far less.  I should be able to (hope to be able to) work during this time.  The only unfortunate thing about Yondelis is that, because of its lower toxicity, it does not cause hair loss . . . and I was kind of hoping for that "full body Brazilian wax" look that my AIM regimen (Adriamycin + Ifosfamide + Mesna) gave me.

2) Radiation (mid June - end of August) -- She thought I would be a good candidate for Proton Radiation, though I have yet to learn from Emory if they have the bandwidth yet to treat me in the new Atlanta facility.  From what I've read, they are focused on brain and neck tumors currently, though in 6 months from now they might have room for me and my rare pelvic sarcoma.  Proton radiation would hopefully be fairly non-invasive . . . even in the pelvis area.  Note: regular radiation therapy is like a shotgun, proton therapy is like a rifle.  I do not want "old school" radiation therapy down there!

3) Surgery (October) -- Honestly, this part scares the hell out of me!  I've read just horror stories about this type of surgery, with recovery taking several months or even longer.  Wound complications are anticipated, there is a high risk of permanent sacral nerve root dysfunction, and also a high risk of recurrence as it is nearly impossible to get negative margins.  But it you don't remove it, it may continue to grow and metastasize.  Talk about a Catch-22!  Even so, my (former) Oncologist thinks very highly of my Orthopedic Oncologist and said "He wouldn't want to do that surgery if he thought it would put you in a worse place".  Furthermore, she said, "there's at least some chance that surgery might not even be necessary if the chemo and radiation do a good enough job shrinking and stopping the tumor."  I certainly hope this is case as I would rather opt out of this life-changing surgery.

Years ago, during my first ever consult with this doctor, I asked her "What is my prognosis?  What are my chances to survive?"  Her response was beautiful: "Rather than give percentages, I prefer to categorize cases as either treatable or not treatable.  And your case is treatable."  So, while I had her on the phone, I reminded her of that story and asked her the same question again.  Her response was the same: treatable.

To be clear, this was all stated over the phone and unofficially.  I am certainly not holding her to any of this.  She took the time to speak with me because she has a great heart and because she has some very specialized knowledge that may help to save (or at least extend) my life.  Both Holly and I are grateful for her encouraging and insightful words.

My next appointment at Emory is this coming Tuesday morning, where I'll meet with my Orthopedic Oncologist (Dr. Monson) and find out how the Emory plan matches up with the "unofficial" plan above.  One way or another, I'm going to get my damn Yondelis and Proton Therapy!  Dr. Monson should have the lowdown on the nasty surgery details.  He is an amazing surgeon, but it's going to take some convincing to get me to sign up.

Wednesday, January 23, 2019

Diagnosis Confirmed: Myxoid Liposarcoma

I received the call this morning from the PA my Orthopedic Oncologist's office confirming the pathology: I have a recurrence of  Myxoid Liposarcoma.  I would assume this is High Grade (as it was 10 1/2 years ago), but I forgot to ask that question.

Next steps: I will meet with an Oncologist at Emory Midtown to discuss a treatment plan.  My Orthopedic Oncologist also wants a meeting.  The timing of these meetings is TBD, though I would suspect that it would be after Thursday of this week as their Tumor Board (i.e., a group of oncologists, pathologists, and doctors who discuss new cancer cases) meets that evening.

Back to the waiting game . . . .



UPDATE: I just was faxed a copy of the pathology report.  Indeed it is High Grade Myxoid Liposarcoma, consisting of "more than 50% round cell component".

Saturday, January 19, 2019

Humor not lost, but emotions/reality sinking in . . .

WARNING: Adult themes/emotions/language ahead.  Viewer discretion is advised.

On Tuesday, when the doctor first reported this tumor, he mentioned to me that treatment may involve radiation, surgery, and possibly even chemotherapy.  But that all was contingent upon the biopsy results and, furthermore, I may have already reached my lifetime limit of chemotherapy.  My response: "Well good, I didn't want to go through chemo anyway; I couldn't handle losing my hair again!"  TuesDave

When I got home, Holly had a great one: "Let's kick cancer in the butt!"  We both laughed.  Unfortunately though, that's my butt too!  And right now it looks like it's kicking my ass!

For those who have read my blog in previous years, you may think of me as a very positive-thinking person.  Though I certainly have and can be that person, I tend to rather think of myself as the kind of person who wants to make the best of a bad situation.  For me, everything is not rainbows and butterflies; it simply is what it is.  And from there we, as individuals, decide how to interpret the data presented to us.

For example, when I was first diagnosed 10 1/2 years ago, initially I was kind of sad/depressed and wondered "why me?"  But after my first round of chemotherapy, all such thoughts evaporated.  No, the chemo did not dissolve those thoughts, I just came to realize (through additional data) that I was actually pretty fortunate.  As I walked the 7th floor there at Emory Midtown Hospital (then Crawford Long), I met many other sarcoma patients who had cases far more difficult/complex than mine.  Yet, somehow, every one of them found a way to be positive and optimistic.  So certainly if they could be happy/positive/optimistic, so could I!  I maintained that attitude throughout the following weeks, months, and years.  The reality now, however, is I am that other person, my situation is now this difficult/complex case.

Though the jury is still out (in that a diagnosis has not yet been delivered), I'm fairly certain that my case is somewhere between fucked and totally screwed!  Short of some miracle cure, such as targeted cancer therapy, I think the best I can do is to buy time.  Possibly the newly open Emory Proton Therapy Center might be able to slow or possibly even stop the growth of this tumor.  We shall see.

More than anything, I just want to live!  I want to (eventually) retire from my job, move to Florida, and grow old with Holly.  Just this past month Holly and I visited a master-planned community there in Florida called Nocatee (just south of Jacksonville and north of St. Augustine).  It's a beautiful area and we fit right in.  It was our goal to move there in 5 years, right after our youngest boy Kyle, now a high school senior, graduates from college.  Now, literally, only God knows . . . and He has yet to share the news.

So, I'm wide open for any devine intervention and/or medical miracles!

Pro Tip: It really is hard to keep your emotions in check while waiting for a diagnosis!

Thursday, January 17, 2019

CT-Guided "Deep Bone" Biopsy

I have to admit that I am far from over the initial shock of having some sort of yet-to-be-defined tumor in my body.  Honestly, the location absolutely sucks!  And as we all know, it's all about location, location, location!

Just do a little Googling of pelvis anatomy and you'll quickly see that this is a veritable junction box for everything waist down.




Now I'm no doctor, but other than your brain, I can't really thing of a worse place for a tumor!  And my particular tumor seems to be involved with many of these major nerves, arteries, and veins.

The real "wake up" call came when I went in for my biopsy.  I really had no idea at all as to how they were going to do this biopsy, just that they needed to do a biopsy.  Once I was there, however, I was told that this was going to be a "deep bone" biopsy.  "Why are you taking something from my bone when the tumor is soft tissue?", I asked.  Their reply was twofold:

  1. It is too risky to reach for the soft tissue under only CT-scan guidance.  According to the doctors doing the biopsy, it is not possible to distinguish between nerves, vessels, and soft tissue with just a CT.  I would need an MRI guidance to do that, which takes a very long time.  This, of course, is just more confirmation of how risky it is to operate on that area.
  2. "The tumor is involved with your sacrum", says the doctor.  Therefore, we should be able to get tumor cells by taking deep bone samples from your sacrum.  My (unspoken) reaction: "Oh shit, it's in the bone?!?"
Just before they got going with the procedure, they went through their standard "safety checks" (programmers call these "sanity checks") where they confirm who you are and what procedure you are asking them to perform today.  I told them that "they are going to do a very soft and shallow bone biopsy in my right hip area using a tiny needle and that they were going to load me up with plenty of really fun drugs so that I could laugh a lot during the procedure."  They all got a good chuckle out of that one.  ThursDave (inside joke).

I was awake throughout the procedure, having been given only a mild sedative and localized pain killers.  The procedure itself was really quite interesting, especially the conversation between the attending physician (who supervised) and the resident physician (who did the actual work).  There was some drilling, some checking of the scan, some more drilling, some tapping (like with a hammer type instrument), some more verification, a little bit of pain (followed immediately by more scan verification), followed by more careful drilling, tapping, scanning, and finally sample collection.  There was no immediate diagnosis from the pathologist in that room looking at the samples.  I was told it could take a week or more for those results.  My hunch though is I'll know something by Tuesday, 01/22/2019.

I was also told that there was always the chance that they may not have collected any relevant material!  In that case, they would likely follow up with a MRI guided biopsy.

I really love all of the doctors and nurses there at Emory.  They are all so very kind and professional.

Now we play the waiting game to find out what this really is!

Tuesday, January 15, 2019

10-Year Scan Results

I know it's been a while since I've posted an update, but everything has been going so well that it just seemed boring to continue writing "n+1 Years NED!".  But then again, a 10-year anniversary is a really big deal so I've been looking forward to writing this post for quite some time.  If nothing else, I wanted everyone to know that I was still alive and doing well.

Unfortunately, however, what I have to report is *NOT* good news.  And after so many months and years of hearing nothing but good news, I've become a bit complacent about this sarcoma thing.  That was something that happened to me many years ago and I had long since lost any emotional connection to the disease.  I had even stopped going to the local Relay for Life and other cancer/sarcoma events.  From my perspective, if I wasn't really "feeling it", there was no point in me going and "faking it".  Well, virtually overnight, that all has changed.  I'm definitely "feeling it" now!

So this time, instead of hearing the customary "scans all clear", I was initially told by the PA that:

  1. A small nodule in my right lung (unchanged for years) is apparently bigger than it was in previous scans.  But it is still "tiny".
  2. We found something in your right pelvis area.  The doctor will provide you with more details.

Later, my doctor (an orthopedic oncologist and sarcoma specialist) came in and shows me CT-Scan images of my right pelvis region.  This thing was big!  Shockingly big!  He then proceeded to ask "Are you feeling any numbness in your right foot, weakness in your right leg, or having any sciatica pain?"  I immediately responded "Yes, yes, and yes!"  "How long has this been going on?" he asked.  "At least 6 to 9 months", I replied, "I just figured this was nothing more than classic 'old man' sciatica.  Guess I know now what the source of this all really is!"

In fairness to me, the symptoms I had were all classic sciatica.  I had never experienced this sort of pain before, but I figured this was just all part of getting older.  Many people far younger than I have reported similar pain.  Not once did I think: could this be the rebirth of my sarcoma?  Call me naive, but long ago (after several false alarms) I made a point of not jumping to sarcoma as the source of whatever was ailing me.

My doctor immediately ordered an MRI of that area to get a closer look as well as a biopsy.  Below are some pictures from that MRI:






Now it's time to get technical.  Here are several quotes from my CT scan radiology report (I do not yet have my MRI radiology report):

  • A couple of punctate nodules in both lungs without dominant nodule.  Most of these pre-existing nodules are unchanged from prior study, however a 4 mm right apical nodule is more conspicuous when compare to the exam dated 9/6/2017 and 8/30/2016.  Preevaluation per oncology protocol.  A short-term follow-up is needed given the patient underlying cancer since metastatic disease cannot be excluded.
  • A new soft tissue mass is seen within the right pelvis intimately associated with the right internal iliac vasculature, the peripheral portion of which extends into the right sciatic foramen and is inseparable from the right pelvic sidewall and ventral aspect of the right sacrum through without evidence of obvious bony erosion -there is evidence of invasion of this soft tissue into the right S1 and right S2 neuroforamen surrounding the nerve roots at these levels.  This mass overall measures approximately 7.6 x 6.5 axially by approximately 7.7 in craniocaudal extent.
  • Slight increase in size of single retroperitoneal lymph node as seen on previous CT in upper abdomen.
Next up -- the biopsy!