NYC Trip; MSK Advice

I've been back now 4 days from NYC and Memorial Sloan Kettering Cancer Center (MSK), and many people have wondering how the trip went and what I found out.  All I can say is, "What a busy week!"  I got home Tuesday evening and was back to work Wednesday - Friday for 3 very intense days.  Today I'm just breathing a sigh of relief that I don't have that much going on!  So, no better time than now to post a blog update.

Dave & Deb Hit NYC!

Given that I have not been to NYC in over 30 years (and I didn't want to get lost), I asked my sister, Deborah Novak Jagoe, to accompany me.  She enthusiastically jumped at the opportunity.  Being a veteran of NYC (with dozens of NYC business trips behind her), her expertise was invaluable.

We landed in LaGuardia airport Sunday morning (7/28), checked in early to our Manhattan hotel, and made it down to the 911 Memorial by noon!

911 Memorial with 911 Museum in background

One World Trade Center

Seeing "ground zero" was really quite emotional.  And I can assure you of this: the people of NYC have definitely not forgotten what happened there.  To them, it was just yesterday.  They (rightfully) take this all very seriously and are quick to point out if anyone is not being respectful in that area.

Our next stop was the One World Observatory . . . or floor 102 in the One World Trade Center.  What incredible views from up there!  I'll let my pictures do the talking:

Statue of Liberty and Ellis Island in the distance

Brooklyn Bridge

Deborah and Dave

Next was a visit to the 911 Museum.  Talk about intense and emotional, this place is the very definition.  Here's a few pictures from the 911 Museum:

After all of this on a very hot New York day, we found ourselves wiped out and hungry.  We ended up having dinner in Chinatown at a popular place named Wo Hop.  After that meal, the hunger was gone, but we were even more wiped out.  We ended up heading back to the hotel early and just relaxing.  This also gave me the chance to put together my list of questions for my doctor's appointment the next morning.

8:30AM Monday (7/29): Dr. Sujana Movva, Medical Oncologist and Sarcoma Specialist

My first MSK appointment was conveniently located in the same building as our hotel.  All we had to do is exit the building, go around the corner, and there it was!  After filling out a bit of paperwork and having my vitals taken in the lab, we were soon called back to meet with Dr. Movva.  Upon meeting her and sharing my cancer history, I quickly learned that I have met Dr. Movva years ago.  It turns out that she was the one who ended up replacing Dr. Gina D'Amato at Emory when she left there years back to go to Georgia Cancer Specialists.  I ended up meeting Dr. Movva at one of the Sarcoma Survivor group meetings that Emory used to hold.  What a small world!

Dr. Movva made it clear to me that I have Stage 4 metastatic disease.  At this time, there is no known cure for what I have nor (in her opinion) was surgery a viable option.  Based upon her experience, even the radical "extended hemipelvectomy" would only provide a 20% chance of eradication of the disease.  Having said all of that, she said that my case was not as bad as the typical Stage 4 case since mine appears to be localized in one area and is responding to the chemotherapy.

Dr. Movva went on to explain that there are a number of trials (ongoing or ready to start) for patients with High Grade Myxoid Liposarcoma.  Each of these trials, however, are fraught with the following complications:

1. They are all Phase II trials (none are Phase III quite yet)
2. Most of them have very strict qualifications, and my Stage II Chronic Kidney Disease (from chemo I had 11 years ago) and Secondary Adrenal Insufficiency (from benign Pituitary tumor 19 years ago) is probably enough to exclude me from most.
3. All of the trials would require that I live here in NYC and be treated at MSK for the duration of the program.  No way am I doing that for a Phase II trial.
4. Some of the trials (that make use of immunotherapy) also want to first suppress your own immune system.  By this, they mean to kill all of your white blood cells first before they give you the drug that (hopefully) will kill your cancer.  Again, no thank you for a Phase II trial.
5. Dr. Movva also stressed that the results from any of these trials are by no means guaranteed.  Compare this to Yondelis, which has already proven to be working for me.

After explaining (sometimes in great technical detail) all of the pros/cons of being part of a clinical trial, Dr. Movva went on to say that the common sense option for me is to stick with Yondelis.  This is the best option for patients with recurring metastatic myxoid liposarcoma.  It turns out that several of her patients have been on Yondelis for 4-5 years or more and that this treatment alone can keep the sarcoma from growing or spreading.  Apparently many patients are also on the same 1.0 mg/m2 dosage that I get, as higher levels often end up being too toxic.

Should the Yondelis stop being effective or my body can no longer tolerate it, Dr. Movva suggested looking into Radiation Therapy as an option.  Otherwise, just stick with Yondelis . . . forever!

Following our appointment, Deb and I spent the day seeing the sights.  Here was one of our first stops:

At Trump Tower, here to announce my "Yondelis for Life" program!

Having been reminded by the doctor how serious my case is, I had to stop here when we walked by:

Lit a candle and said a prayer at St. Patrick's Cathedral. All I ask is for 15 more good years!

15 years at this point sounds like a dream . . . but I have to dream big!

9:30AM Tuesday (7/30): Dr. Nicola Fabbri, Orthopedic Surgeon

I had the chance to hear all of the gory details involved with doing limb saving pelvic surgery.  Apparently this is THE most difficult surgery they do . . . and my tumor is in the worst possible location.  I'll spare you the details and jump straight to the conclusion from Dr. Fabbri himself: surgery (either limb saving or extended hemipelvectomy) is not going to be an option.  Why?  Because they will not be able to eradicate the disease with surgery.  Instead, however, Dr. Fabbri suggested that I come back to MSK and be evaluated by a Radiation Oncologist for radiation therapy.  Specifically, there are two types of radiation for which he thinks I would be a good candidate:

1. Stereotactic Body Radiation (SBRT) -- See What is SBRT? for more info.
2. Proton Therapy -- See What is Proton Therapy for more info.

Each has its pros/cons and it would be up to the Radiation Oncologist to determine what would work best in my case.  I've actually already confirmed my next MSK visit for Wednesday, August 28, with Dr Yoshiya (Josh) Yamada.  I can't wait to hear what he has to say.

Dr. Fabbri and his associate "fellow" doctor made it clear, however, that radiation was going to be no cakewalk for me.  In particular, my sciatic nerve cannot help but be damaged/irradiated during treatment.  Some people I'm told actually experience great sciatic pain as a result of such treatment.  Furthermore, given the sensitive tissues and organs in that area, I may experience other complications as well.  Why are there always complications?!?

Most importantly though, Dr. Fabbri felt as though it would be better for me to start radiation therapy sooner rather than later.  Why not wait?  Because I need to hit this thing hard before it decides to spread elsewhere is why.  Oh but if only the radiation were "easy", like it was 10 1/2 years ago.  But with this beast, nothing is ever easy . . . and there are always complications!

I elect to reserve final judgement on radiation therapy until after my appointment with Dr. Yamada.  Even so, my gut tells me to stay the course a bit longer before I double down with both Yondelis and Radiation.

Round #6 winding down, Round #7 in 1 week

As the expression goes, "No news is good news!"  And in my case, Round #6 has gone fairly smoothly.  This time I perhaps had a few more (minor) issues at about the 1 week point, but all is well now.

Going forward, each additional round of chemotherapy will be scheduled for approximately every 3 1/2 weeks.  Thus, Round #7 will start on Thursday, July 18th, and Round #8 will start on Monday, August 12th.  The dosage will remain unchanged: 1.0 mg/m2.  The reason for this minor alteration is because doing chemo every 3 weeks is noticeably harder than every 4 weeks.  I sense the difference with bloating, fatigue, and nausea.  Plus, it means making a few more trips to the oncologist's office.  So we're going to try it at 3 1/2 weeks and go from there.  If it's still too much (either physically or personally), we'll drop down to every 4 weeks.

Shrinkage

Several people have asked me about my total tumor shrinkage since I was diagnosed back in January 2019.  I'm not a Radiologist (nor should I play one on this blog), but using some basic mathematical stills, I believe the tumor has shrunk about 19% since January.  I think that's fantastic!

Start Spreading the News . . . I'm Leaving Today In About 2 1/2 Weeks!

For the last 2 months, I've been interested in seeking a second opinion about my treatment.  Given that it appears as though I will be on the Yondelis regimen for many months to come, I want to be sure this is, in fact, the very best treatment I can get.  If there are any Phase III clinical trials available, or even something on the horizon, I might just be interested.

The other reason for the trip is to get a second surgical opinion.  As you may recall, an extended hemipelvectomy was recommended in my case.  But given how radical that approach is, I wonder if there isn't some other option?  Perhaps it's just best to skip the surgery altogether and stick with chemotherapy.  Or, after a certain amount of chemotherapy, we switch to proton radiation.  I definitely want to get an answer to that.

So, with those goals in mind, I have selected Memorial Sloan Kettering (MSK) in NYC as the location for my second opinion.  MSK is a National Cancer Institute (NCI) designated facility that, as best as I can tell, leads the pack in terms of developing new drugs and treatments that specifically target a certain tumor type.  Furthermore, they have some of the very best surgeons around.  Tentatively, I am scheduled to see them later this month on July 29 - 30.  Details should get finalized tomorrow.

Likely the next time you'll hear from me is when I get back from MSK.  I'm sure I'll have plenty to share at that time.

Round #5 is Smooth Sailing; Scan Results Encouraging

As expected, Round #5 did indeed start on June 4th.  My CPK numbers were within range so there was no reason to delay my treatment.  My dosage was increased slightly this round to 1.0 mg/m2 (same as Round #3).  And fortunately for me, things have pretty much gone smooth as silk. No complaints or complications to report this round!

Scan Results

On Monday (June 17) of this week I had another set of follow-up scans.  They ended up doing a CT-scan of the Chest, Abdomen, and Pelvis (CAP) along with an MRI of the pelvis.  Just today I received the radiology report with the good news: about 12% shrinkage of the tumor and no further metastasis detected.  That's fantastic news and a huge relief for me!  The Yondelis is certainly working and (finally) I am tolerating it well.  I suspect we will "stay the course" with this Yondelis treatment until that tumor is shrunk down to next to nothing.

Round #6 Starts Tuesday

Assuming my counts all look good on Tuesday, I am expect Round #6 to begin that day.  I think there's a chance that my dosage might be increased slightly for this round, but I doubt the doctor will want to tempt fate too much (given my experience with Round #1 and #2).  I'll keep you posted.

That's it for now -- thanks for reading!

Back from Cruise; Chemo Starts Tuesday

Like most vacations, our days cruising on the Disney Magic just flew by!  It seemed nice and slow and leisurely at first, but once we started having port stops in Italy (which lasted the better part of a day), time quickly accelerated.  Before we knew it, we were on our last port stop in Nice, France and then headed back to Barcelona.  The weather was cooler than expected for the first few days, but then greatly improved about the time we hit Florence.  Our best days were the day in Nice and the day at sea following Nice.  The overall trip was wonderful!

Here is just a small sampling of pictures from the trip:

Sagrada Familia, Barcelona 

First night of the cruise

Naples/Sorrento -- it rained a little during our excursion

Triumphal Arch, Rome -- weather improving (no rain)

Colosseum, Rome

Florence -- weather getting good!

Florence -- our favorite city!

Nice, France -- nice weather!

Our ship in Villefranche harbor

Chemo Round #5 Starts Tuesday, June 4

Now back to the not-so-fun stuff.  Originally I was scheduled to start today (June 3).  I went in for my appointment as scheduled, bloodwork was done, but the doc was hesitant to start me today without first getting confirmation on my CPK count, a test which takes a full day to get results.  You may recall that my CPK spiked off the charts just before the cruise.  Well I did as instructed and drank a ton of water while on vacation.  I actually felt great the entire cruise!  But due to this high CPK number prior to the cruise, the doctor wanted to first verify that it has returned to normal ranges before dosing me with more Yondelis.  As he often says, "once we put it in, we can't take it out".  Therefore, out of an abundance of caution, it was decided that the best thing to do was delay until we have a verified good CPK number.  I return to the infusion center tomorrow morning with the expectation that I will start Round #5.

Happy Birthday Barbara!

There's another big thing that's happening tomorrow as well.  My youngest sister is having a birthday.  She has been with me at every significant step in my treatment . . . even back 11 years ago when I was first diagnosed.  Love you Barb!

"Cleared" for the Cruise

In general, I've been feeling a lot better starting around last Friday.  Thank you everyone for your well-wishes, prayers, and words of encouragement.  I think those all worked wonders for me!

With our vacation starting tomorrow, you can only imagine how busy Holly and I were over the weekend.  Come Sunday afternoon, I ended up spending over 3 hours outside working on the yard and landscaping.  This was the first of such work since my diagnosis and it was overdue.  I felt strong going into it, but by the time I was done, my arms were very sore, burning in fact, from holding the large bush trimmer for so long.

The doctor has warned me to stay away from "extreme exercise" or spending hours in the gym doing heavy weightlifting as this can lead to elevated Creatine Phosphokinase (CPK), and possibly even Rhabdomyolysis, both conditions that I had back in late March.  Never though would I have thought that simply "trimming the bushes" would have been something equivalent, but apparently I was wrong.

Tuesday Labs

I had my final pre-cruise labs taken yesterday (Tuesday), and all seemed to check out OK, so they "cleared" me for the cruise.  But one of the labs (the CPK) takes a full day to get results.  I got a call mid-morning today from Nicole (the NP) and immediately suspected that something must be off with my CPK, or otherwise she would not have called.  She informed me that my CPK had jumped from 91 last week to a critical 2416 in yesterday's lab.  Holy crap!  My CPK number was less than half of that back in March and they were ready to put me in the hospital.  Keep in mind that the "normal" range for CPK is 24 - 204.  So yes, my numbers are off the chart!

She then asked me to come into the clinic today for more fluids, which is what is necessary in order to drive that number back down.  I refused, citing too many schedule conflicts for today.  I believe I can get the same thing here at home by simply drinking lots of water.

This is nothing to take lightly either.  As I reported back on April 1, high CPK levels can cause the release of potentially toxic muscle cell components into the extracellular fluid and blood stream.  This, in turn, can result in renal/kidney damage and, in extreme cases, renal failure.  But rather than go down that dark road, I'm going to focus on drinking fluids . . . lots of fluids.

Doctor's Orders: Heavy Drinking Required on the Cruise

Rather than revoke my cruise card (yeah, like that's going to happen), the doctor has ordered me to make it my mission to stay extremely well hydrated on the cruise.  I'm pretty sure he was referring to water, but I didn't seek clarification on that point.  Seriously though, I plan to do my best to stay hydrated on the cruise and during our excursions.

"Don't Kick the Bucket" Bucket List Cruise

This cruise is definitely a once-in-a-lifetime sort of thing, though nothing I thought I would get to do until after retirement.  But once your life is threatened, you begin to reevaluate your priorities and time-table for "Bucket List" items.  That's the short version of how we decided to go on this cruise.

I give credit to my younger son, Kyle, for coming up with the "Don't Kick the Bucket" Bucket List Cruise line.  After all I've been through with Yondelis, even the critical CPK count I learned about today, I really want to just enjoy this cruise without overexerting myself in the process.  By the way, he graduates tonight from Brookwood High School.

Back to the cruise, we fly out tomorrow for Barcelona (where, sadly, Friday looks to be a rainy day) and board the Disney Magic Saturday around 12:30.  We should all be back safe and sound Saturday evening, June 1.

More Chemo on Monday, June 3

Assuming I'm still healthy and my blood counts look good, I am scheduled for Round #5 of Yondelis right after I get back.  But I don't even want to think about that right now.  All eyes on having a great vacation and some good family time.

Round #4 a Bit of a Roller Coaster

So here I am, at Day #11 in Round #4, and I have to admit that things have been a little up and down this past week.  Starting last Friday (and lasting throughout the weekend), I was simply wiped out!  Of sure, you can call this a "baby dose" if you'd like, but I can say for certain that it still feels like I've had chemo.  I did rebound on Monday, but these past 2 days now have been very "low energy" days for me.

With only 7 days before we fly off for the cruise, I hope that this thing turns around . . . and soon!  I certainly can't afford to either get sick or feel bad while on vacation.

Wish me well -- I need all the well-wishing I can get!

Surprise! Round #4 Starts Tomorrow!

First off, my apologies for not posting an update earlier.  In general, "no news" means things are either going exceedingly hard or smooth as silk.  In this particular case, it means the latter.  Everyone (especially me, the oncologist, and my family) has been positively shocked at just how easy this round has gone for me.  I didn't have a single complication and have been able to work the vast majority of this cycle.  I'm honestly surprised that just a mere 16.667% dosage reduction has made such a difference, but it did.  Also helping (I think) was a single round of Lasix on day #5, when my body was showing signs of fluid weight gain.

Originally Round #3 was intended to be my last round before the cruise (now just 2 1/2 weeks away).  But since "no good deed goes unpunished", the doctor feels strongly that I should get another "mild" round of Yondelis prior to the cruise.  Part of the reasoning (and I agree with him) is that you don't want to give the cancer a chance to rally back during the month of "chemo vacation" resulting from the cruise schedule.  And speaking of schedule, the goal is to dose me with Yondelis every 3 weeks.  Thus far, due to overdosing and other complications with Rounds #1 and #2, those rounds lasted 4 and 5 weeks respectively.  But I'm back on schedule now . . . and will pretty much stay on schedule for Round #5 (post cruise), all because of getting this "surprise" dose tomorrow.

Nervous?  Not too much.  If I can manage to have another round that goes as smoothly as Round #3, I still should have plenty of fun on the cruise.  There's a chance, in fact, that the oncologist may even slightly reduce my dosage (just this one time) in order to ensure there are no pre-cruise complications.  I plan to negotiate a "reasonable" dosage with him tomorrow.

Happy Cinco de Mayo!

Round #3 Started Monday

Round #3 started as scheduled on Monday, April 15, Tax Day.  Though I had some (unexpected) issues with nausea Monday evening along with some serious night sweats that caused the right side of my Tegaderm Transparent Film port covering to come undone (compromising the seal around my port), Tuesday and Wednesday have thus far been uneventful.  The nurses at the infusion center said that any seal compromise can lead to port infection, though they suspect I'll be just fine.  My port IV line was detached as planned on Tuesday following the completion of my 24-hour Yondelis infusion.

As mentioned as last week, my dosage was reduced from 1.2 mg/m2 to 1.0 mg/m2, a 16.667% reduction.  Furthermore, everyone involved with my treatment (doctor, nurses, even me) are all vowing to carefully monitor my weight and treat with Lasix at the first sign of any fluid weight gain.  In general, the plan is to be more proactive with any health issues that may arise.

Well, that's pretty much it for now.  Hopefully the remainder of this week and the following weeks will be as boring at this update!

Tumor Board has Met; Chemo Regimen Unchanged

The Northside Hospital tumor board met last night and reviewed my case.  Just as I predicted, they have decided that the best course of treatment for me at this time is to continue with Yondelis . . . though with a slight dosage reduction (from 1.2 to 1.0).  Hopefully this reduction, in conjunction with well-timed usage of Lasix (to help jump-start my kidneys and rid my body of excess fluids) might just be the right combination to keep the tumor shrinking and my organs healthy.  I can assure you that my organs (liver, kidneys, lungs, and stomach/GI in particular) have suffered tremendously after just two cycles, so I don't want to push them over the edge with Round #3.

Speaking of Round #3, that starts this next Monday (04/15/2019).  Hopefully it's neither a bad omen to have chemotherapy on Tax Day nor a predictor of yet another "taxing" cycle for my body.  Thankfully, this will be all the chemo I will be receiving prior to my cruise (starting on 05/23/2019).

I've been feeling pretty darn good these past couple of days.  This is likely due to being 4 1/2 weeks out since my last cycle and the Atlanta weather being warmer and beautiful.

Next update on Tax Day!

MRI Results Are In: Tumor Shrunk About 12%

I received my MRI results today and the new tumor measurements indicate that it has shrunk about 12% from my original MRI back on 01/15/2019.  Unofficially, I think it has actually shrunk even more than this given that the tumor went unchecked from 01/15/2019 - 02/11/2019 when my first cycle of chemotherapy started.  Certainly the tumor must have grown during that time, but given that I did not get a new baseline MRI immediately prior to treatment, this is pure speculation on my part.  Even so, the Nurse Practitioner (Doc was away) was pleased with the results.

So the plan going forward is for the doc to present this information to the Tumor Board this Wednesday evening.  Part of this discussion will be an examination of the complications I have experienced while going through Yondelis.  It's possible that they might move me to an entirely different chemo regimen, but my prediction is that they're going to want to stick with Yondelis.  This of course would require yet another dosage reduction, but I somehow think that even a reduced load will still be effective on the tumor.  We'll know for sure after round #4 when they remeasure the tumor again.

I follow-up with my doctor this Thursday to get my new marching orders.  I suspect that whatever chemo they want to give me won't start until the following Monday (04/15/2019).  Because of this late date, there's no way I'll be getting a 4th round of chemo prior to my cruise starting May 23rd.  Worded differently, this means I should be quite healthy for the cruise and able-bodied to work in the weeks prior to the cruise.  Honestly, this is a huge relief as being sick/weak would jeopardize the trip.

Expect another update Thursday after I speak with the good doctor.

Round #2, Weeks 3 - 4, Trouble Continues

Within an hour of posting my last update (on 03/24), I found myself on the way to the ER with severe abdominal pains.  They gave me some great drugs (Dilaudid) that temporarily killed the pain (thank God).  They ended up keeping me there about 8 hours, running various tests and scans, but never came up with anything definitive/obvious as to the source of my pain (which is both good and bad news).  Therefore, they sent me home around 3:30am Monday morning to continue my recovery from home.

I had a standing appointment with my Oncologist later that Monday.  It turns out that one of the possible side effects from Yondelis is Abdominal Pain.  This pain can be caused by liver complications or it could even be the chemotherapy drugs eating away at the lining of my stomach and GI track.  Mercifully, the abdominal pain slowly started to improve over the days that followed.  Even so, nearly two weeks later, I still have some, albeit minor, abdominal pain remaining.

I ended up seeing my Nephrologist (i.e., Kidney doctor) on Tuesday (03/26), who actually had a number of practical suggestions to pass along to my Oncologist:

1. Oncologist should slow hydration if my body starts collecting fluids.
2. Oncologist is free to use Lasix as necessary during infusion if my body is collecting fluids.
3. My kidneys are likely "shocked" by the chemotherapy and temporarily shut down during the first week of my chemotherapy cycle.  Again, Lasix can help jump-start them.
4. Oncologist needs to take regular Creatine Phosphokinase (CPK) blood tests to measure muscle breakdown.  Severe muscle breakdown means I'm getting too much chemotherapy and can even lead to kidney damage.
5. Nephrologist suggested that I drop my usage of Lipitor for now since it too can cause muscle pain.  Since I'm already battling this to some degree with the chemotherapy, there is no need to exasperate the situation further by taking a Statin drug.

Turns out that he was spot on with suggesting that CPK test.  With my abdominal issues reaching the tolerable point, the very next thing I felt was extreme weakness, fatigue, and muscle pain/weakness/tenderness across my entire body.  At the time I was unaware that this could become serious.  I compensated by simply napping more and laying low for the next couple of days.  On Friday (03/29), however, I had another Oncologist follow up and they wisely drew blood for a CPK test.  Apparently though this is not a STAT test, so I had to wait until Monday for the results.

Come Monday morning, April Fools Day, I got the call from my Oncologist's office that my CPK levels were very high (1181, with "normal" range being 24-204).  They were actually ready to admit me to the Hospital again when I told them I was feeling better today than last Friday.  Therefore, they are going to try to treat this on an outpatient basis . . . with me making daily trips to the Oncologist's office during the week.

I've since done a little reading on my diagnosis, Rhabdomyolysis, which is an injury of skeletal muscle that releases potentially toxic muscle cell components (e.g., myoglobin, other intracellular proteins, and electrolytes) into the extracellular fluid and blood stream, which can result in renal/kidney damage.  My research shows that about 0.7% of Yondelis patients experience this rare condition, and most recover just fine.  That said, some have actually died from complications related to this diagnosis, so it should not be taken lightly.  I remain optimistic that I'll have a full recovery.

This Friday (04/05), I actually go in for a follow-up MRI of my right pelvis to see what impact Yondelis is having on my tumor.  Given that the drug is practically killing me, I can only hope that my tumor is doing far worse than I am.  Results from that MRI, however, will not be available until the following Monday (04/08).  This will also be a good indicator as to whether or not we stick with Yondelis (despite how brutal it is), or move on to a different chemo regimen.  All answers will be known soon enough!

What a rough week!

It's been a doozy of a week, putting it mildly.  Dropping back about 9 days (to Friday, March 15), it looked as though things were going better than expected for Round #2.  I was feeling fine, a bit bloated perhaps, but otherwise perfectly fine.  I was even able to get some important assignments completed for work, something that is only possible when the fog of "chemo brain" is low and energy is high.

Come Saturday (March 16), I could tell that things were starting to head in a bad direction.  I knew I had put on 15 pounds over the past 5 days (all as water/fluid gain) and I was not expelling these liquids from my body.  I wasn't overly concerned, however, since I had the exact same weight gain during Round #1.  By Sunday (March 17), I did not want to eat/drink anything due to just how bloated I felt.  Furthermore, and for the first time, I was seeing edema building up in my legs/ankles/feet.  Weakness, fatigue, and shortness of breath had also reared their ugly head.  I knew this wasn't good, and I even contemplated going to the ER, but I had a standing appointment with my Oncologist the very next morning so I figured I'd "tough it out" and wait to see what the doctor had to say.

Come Monday morning, I was very weak.  Given that there was no way I could safely drive in that condition, Holly had to take off more time from work in order to chauffeur me to my appointments.  It took everything I had to walk from the parking lot to the Doctor's office.  As normal protocol, STAT blood labs were collected so that the doctor could review those results during my appointment.  While walking to the patient exam room, I by chance caught the doctor and his nurses in the hallway and it was clear from their faces that I must be in bad shape.  They also noticed how I was struggling to breathe as I walked.  Having been informed by the lab that my pulse ox was very low, they quickly hooked me up to an oxygen tank.  A little more testing revealed that at rest, my pulse ox was nearly normal at 95%.  But once I exerted myself (i.e., got up and walked), it would drop to as low as 80%.  Any attempt to try to take a deep breath would result in me instantly coughing . . . sometimes productively.  These symptoms, combined with concern for my rapid weight gain and edema buildup in my legs/ankles/feet, where enough to have the doctor directly admit me to Northside Hospital under the presumption of pneumonia.

I stayed at Northside Hospital for about 3 days (Monday, March 18 - Wednesday, March 20).  During that time, a large number of tests/drugs were ordered.  Here are the key highlights:

• One round of Lasix (a diuretic) was ordered to help encourage my body to flush the 15 pounds of fluids I was carrying.  I was very hesitant about this, especially given that I have weak kidneys and did not want to chance renal failure, but this seemed to do the trick with expelling these fluids.
• IV antibiotics were ordered under the presumption of pneumonia.  Further testing, however, showed no signs of pneumonia.
• A CT-Scan of my chest revealed a partially deflated/pancaked lung.  It is believed that the fluid buildup caused this.
• I was ordered to do breathing exercises using a Voldyne 5000 Incentive Spirometer.  In time, this actually improved my lung volume considerably.

I was also diagnosed with Capillary Leak Syndrome, believed to have been brought on by my Yondelis treatment.  A key concern at this point is the impact this could have upon my kidneys, which were already hurting from the chemo I had 10 years ago.

Since my release from the Hospital on Wednesday, I have overall remained fairly weak.  Starting Thursday evening, I began feeling abdominal pain.  During "sleeping" hours, this pain would often become severe.  I was almost ready to wake up Holly and head to the ER when "miraculously" the pain just stopped.  Yup, come Friday morning I was feeling just fine, chipper in fact!  And because I felt so good, I never even bothered to call my doctor's office to report the issue.  It was over . . . or so I thought.  Friday night ended up being a repeat of Thursday night!  But once again, the pain was gone in the morning.  This time, however, I called the "on call" nurse who suggested that if the pain recurs again Saturday evening, I should immediately go to the ER.  Scanning my abdomen while the pain is active is the best way they are going to diagnose the issue.  There is apparently some thought that I could be experiencing Colitis (or something similar), brought on by Capillary Leak Syndrome.

Saturday night, however, I had no severe abdominal pain, so we made no ER trip.  As I write this post late Sunday afternoon, I find myself being weak and feel some more abdominal pain coming on.  And given that I have another Oncologist appointment scheduled for the morning, I'm again hesitant to go rushing off the the ER this evening.  That said, it would not surprise me one bit if I find myself back in the hospital starting tomorrow.

I'm sick of being sick!  I'm tired of Chemotherapy (this regimen at least).  I just want to start feeling normal again!

Round #2 Started Monday

Though so far I've been fine, my experience from Round #1 warns me that things will likely be getting much worse for me starting tomorrow (Thursday, Day #4). Given the 20% dosage reduction this round, I'm admittedly feeling more confident, but I don't want to be naive about this either. My liver enzymes on Monday were still nearly triple the normal range and my other blood work continued to show some signs of anemia. In other words, yes I have a dosage reduction this round, but I'm also starting in a worse position (physically) than I did for Round #1.

In fairness to my doctor, he was ready to push Round #2 off yet another week. I put my foot down though and said "We really need to stay on schedule" and that if he wanted to let this slip another week, I would ask that it slip another 2 weeks as I have plans the weekend of March 23rd (which I would be forced to miss if the schedule slipped a week). And there was no way he was going to let this slip 2 weeks because at that point it could diminish the cancer killing impact of Round #1. So, after hearing my reasons and conferring with his mentor (my original Oncologist) for a quick 2nd opinion, they agreed to "bite the bullet" and start Round #2 on Monday, March 11. I'm hoping this was indeed the correct decision as it will be me paying the price if it's not!

Just as with Round #1, they are keeping a very close and careful eye on me. I have appointments scheduled every single day this week (for blood tests and fluids) and am already scheduled for an appointment with the doctor next Monday. And though I really appreciate all of the care and attention, it leaves little time for anything else as each daily appointment takes anywhere from 6 - 7 hours depending upon how smoothly appointments are running and how heavy the Atlanta traffic is on my way there and back. It's exhausting.

A Big "Thank You" for all of the Cards and Emails

So many people have written me and I can't even being to communicate how much this means to me (and Holly).  One of the most encouraging emails was from a next door neighbor, who wrote:

We hate the toll this treatment is taking on you. Hopefully, the cancer cells are MORE miserable than you are!

What an encouraging observation!  I obviously am hoping this is exactly what's going on inside me now!

Decision on "Manny Pack" Name

I was honestly surprised that nearly 100 potential names were sent to me for my chemo pack.  Only one of these names, however, came with it's own song!  A good friend, fellow Liposarcoma Survivor, and all-around talented guy (Robbie Long) came up with the name Love Pack . . . and this song:

Of course, Round #1 didn't really feel like "Love" . . . at least not to me.  So think of this song as more like a prayer . . . a hope that what Yondelis delivers will ultimately be a good thing to me and the family.  I love it!

Exam Week; Spring Break

My apologies for not posting an update earlier.  As you likely have guessed by now, I did not get more chemo on Monday.  That has been tentatively rescheduled for Monday, March 11.  Call it a Spring Break or whatever, I was happy to not get more chemo this past Monday.  I was just too weak, so the doctor gave me a week.

Actually, there was some real concern from the doctor as to what was going on with me.  Yes, my liver enzymes are still high and I'm slightly anemic, but that alone should not have been enough to explain my extreme fatigue and cold chills.  Therefore, the following tests were ordered:

1. Blood cultures from both my port and my arm were taken in order to rule out an infection in my port. Thankfully, there was no infection.
2. A Chest CT was ordered as a follow-up to an earlier Chest X-Ray, which showed fluid in my lower lungs.  The Chest CT essentially confirmed what the X-Ray had shown, but nobody is currently too concerned, though they are keeping a close eye on it.
3. The Chest CT also revealed "indeterminate lesions within the liver", which resulted in the doctor ordering a Liver MRI with contrast.  The results of that seemed to indicate these were hemangiomas, which the doctor says are anatomical rather than pathological.  Even so, they wish to compare the Liver MRI with my recent Emory CT just to confirm that things appear unchanged.  Still awaiting results.

So no chemo, but I've been to the doctor's office and numerous imaging facilities 3 of 4 days this week thus far!  Thankfully, I have Friday off in order to try and catch up with things at work.

Overall, I think I'm feeling better this week.  I still am getting cold chills, but I think I'm feeling stronger and more like myself.  Certainly I'm moving in the right direction.
Assuming my labs look good on Monday and nothing strange/scary comes back with my Liver scan comparison, I should be ready for Round #2.  I will add that the doctor has already promised me that the dosage for Round #2 will be about 20% less that what he gave me for Round #1, so I should tolerate it better.

Chemo Monday???

Just a brief update to say that not a lot has changed in this past week. Though my doctors and nurses seemed certain that I would "bounce back" and "reset to normal" somewhere around 2 weeks post chemo, I feel like my body has been in a holding pattern now for the past 10 days. 10 days ago I would have classified myself as about "60% recovered"; today I would still call it "60% recovered", despite the fact that my blood labs continue to show steady improvement.

 My chief complaints now are:

• Extreme fatigue
• Sudden, frequent onset of body chills/coldness (but no fever), which usually lasts a few hours
• Still experiencing symptoms of "chemo brain"

Bottom line: I just don't feel like myself at the moment.  

This all begs the question: will I get more Chemo on Monday?  I honestly wouldn't be surprised at all if the doc lets it slide one more week, in the hope that I will recover further.  Alternatively, he could stick with the schedule and dose me down a bit.  It will be interesting to see what he decides . . . and why.

Yondelis: The Chemo that Keeps On Giving

Yes, I realize it's been nearly 2 weeks since I posted my last update.  My only excuse is Yondelis.  And it's a good excuse too!  Yup, it pretty much kicked my ass (figuratively for sure, literally I hope).  Not that I ever thought this was going to be easy, but clearly Yondelis is not the "kinder, gentler chemo" I had hoped for.

I was doing just fine up through mid-afternoon Wednesday, 02/13, when it started to hit me.  The initial symptom was extreme fatigue.  I had to make myself lie down for about 2 hours that afternoon and ended up going to bed early that evening.

The following morning (Valentine's Day), I was hit by the full force of Yondelis.  Symptoms included:

• Debilitating nausea (note: usually this has the distinct advantage of causing you to lose weight.  Not with Yondelis!  I gained 10 lbs of fluid weight in my gut!)
• Extreme fatigue
• Body aches
• Weakness
• Shortness of breath
• Total and complete inability to comprehend technical problems (i.e., chemo brain)
• Trouble speaking clearly (also chemo brain)
• Headaches
• Bloated feeling (even though I was eating/drinking very little)
• Don't feel like eating/drinking (because of being so bloated)
• Ins and Outs not matching (because I was retaining fluid)
• Generally miserable

Thankfully I had a follow-up appointment scheduled that morning at my Oncologist's office (Holly had to drive).  They drew several blood samples from my port and hooked me up for fluids.  Of all the counts, the one that really stood out was my Liver Enzymes.  The normal range for this is below 50; my number came in at a whopping 2252 (over 40x out of range)!  The doctor also indicated that elevated liver enzymes is known to contribute towards nausea, fatigue, and loss of appetite.

I was told though that this is just something that Yondelis does and that, in time, my Liver Enzymes should return to normal.  Based on my latest labs, the number is still around 778 (from 02/20), but another lab will be taken on Monday (02/25).  At this rate, I seriously doubt that it will be < 50 by the time Round #2 is scheduled to begin (on 03/04).

My life these past 10 days has consisted of 6 long trips to the Oncologist's office and basically feeling crappy.  It feels kind of like having the flu, where you feel miserable, sometimes wish you were dead (so the misery will stop), but know in the back of your mind that this is (or at least should be) temporary.  Combine that with the rainy, dreary, and cold weather we've had for about the same amount of time and you'll find yourself dreaming of being healthy and living in Florida!

Things are not all bad though:

• I found the right combination of meds that kept the nausea under control.
• No problem with neutropenia (low neutrophil count), a problem that plagued me 10 1/2 years ago.
• Thus far, my kidneys do not seem to be impacted by the treatment.  Fingers crossed!
• The fluid weight gain has reverted back to net-zero lbs gained this round.
• We will save even more money on our cruise now since I am medically banned from drinking any alcoholic beverages during my Yondelis treatment (due to my elevated Liver Enzymes).

I think the thing that's been most baffling to me is that I just don't know when these symptoms will end.  For example, when I woke up Friday morning (02/22) I felt almost like I had been reborn.  I drove myself to my Oncology appointment that day with a smile and a spring in my step.  But by the time I got home (mid-afternoon), I was completely exhausted and ready for a nap.  Come the next morning (02/23), I felt like crap again, with virtually zero energy.  The best I could do was to move from couch to couch all day.

Contrast this with the AIM regimen which, despite the extreme lows, I could clearly tell when my body hit the reset button.  And once I was on the way back up, each new day was consistently better than the last.  With Yondelis, I still haven't figured it out.  Maybe it's because my Liver Enzymes are still so elevated, I just don't know.  All I can do is take things one day at a time.

That brings us to today.  This morning felt like Friday morning.  I felt stronger and better and was motivated by the (rare) orange ball in the sky to get out and get moving.  Holly and I walked a slow 3 miles at our favorite park today, which is quite an accomplishment for me right now.

In closing, I wish to thank everyone for their name submissions for my chemo bag.  I promise to review those in the coming week and declare a winner.  I also wish to thank friends and neighbors for all of the cards, gifts, meals, songs, encouraging words, etc.  The graciousness shown our family will not be forgotten!

Round #1, Day #2: Unpack Day

Today I go in back to get my "man purse" detached.  Of course, there's no way I'm going to let that name stick; I need your help with a hipper, more trendy name for this "pack".  Here's a few pictures so we all know what I'm talking about:

Close Up showing pump window

The "Secret Sauce" on the inside

What do you call this 'pack'?

So far in the running I've heard:

• Manny Pack
• Man Bag
• Satchel
• Rucksack

None are very clever.  Whatever you want to call it, "purse" anywhere in the name is not acceptable.  And calling it a "backpack" is a real misnomer too as it has a single strap.

They made me watch a 9 minute "safety video" about the pump, which included helpful information such as "Do not take a bath with the pump".  I guess there's a lot of stupid out there, and if you don't explicitly call it out, someone's bound to try it.

You also don't want to cut or detach the line from your port to the pump.  The nurse mentioned that some guy recently decided to trim his hedges while hooked up and inadvertently cut his line in the process.  Who would have thought such a thing were even possible?!?  I'm sticking with my original statement!

I was actually getting a little concerned about doing something stupid myself while I was sleeping.  At least once last night the port area on my chest was feeling scratchy and I was ready to scratch hard and rip that thing out without even thinking.  Luckily I woke up just enough to come to my senses before I did anything I was sure to regret.

But even if that were to happen, have been equipped with an Emergency Spill Kit that I have been assured is capable of handling even the worst toxic spills:

Chemotherapy Emergency Spill Kit

Yes, it's a paper towel, a pair of vinyl gloves, and a zip-lock bag.  The nurse was actually shocked that it was so minimal.  Apparently it used to be much better (2 paper towels?), but with cost-cutting and all, this is what we have today.  Progress indeed . . . kind of along the lines of the Duck and Cover drills from the 1950s, which promised protection, but ultimately only provided the illusion of being safe!  Keep in mind that these chemo nurses wear a hazmat-approved full gown and face mask with working with stuff.  So best to avoid any accidents at home!

As I'm writing this post, it is Tuesday morning and I'm just about to head to the Dr's office.  Overall, I'm feeling much better than I was 10 1/2 years ago going through the AIM regimen.  It's really too early though to make any judgement quite yet, but I'm cautiously optimistic.  I will say that I think I'm already feeling a little "chemo brain" as this post has been considerably more difficult to write than others.  I guess this is to be expected.

Part of what I get when I go in today is a 2-hour hydration IV plus more anti-nausea meds.

I've been told that the "danger zone" with Yondelis is typically between day 7 - 10.  Today is Day #2 in my cycle, so still a good ways to go before I know if Yondelis and I can become good friends.

Round #1 Starts Now!

By the time you read this, I should already be hooked up and zoned out with Round #1 of Yondelis!

Yup, just another reason to hate Mondays . . . at least every third Monday starting from today, Monday, February 11, 2019!  Having gone through chemotherapy before,  I know just how much it can suck the very life out of you.  I had sworn I would never do this again, yet here I am, I've signed up for more.  It's really quite surprising what people are willing to sacrifice for the promise of better health and a longer life!

In fairness though to Yondelis, which has been marketed as the "kinder, gentler chemo", perhaps the better way for me to look at this is: "the enemy of my enemy is my friend".  I've been told that Yondelis has an absolute hatred for Myxoid Liposarcoma, so my focus right now should be on this common ground, where we can both agree.  It's really not fair for me to be prejudging her, just because of some bad breakup I had with another chemo years ago.  I need to hear her out and give her a chance.

But for this relationship to work, there are certain rules/conditions that must be followed:

1. I've got to eat!  No more starvation diets just to try to get along!  Please don't make me feel bad if I do a little light snacking every now and again!
2. You can't have all of my white blood cells!  Yes, I'm sure they are quite tasty mixed in with the Myxoid, but I'm just not ready for that level of commitment.  
3. Leave my kidneys alone, period!  The last chemo I had took advantage of me while was I doped up and sleeping.  Never again!

If these boundaries can be respected, I think we'll get along just fine . . . and we'll each get what we want!  Kill those damned Myxoid Liposarcoma invaders!

Countdown to Chemo!

I know this post is long, and long overdue, but this sort of publishing slippage is exactly what happens when work deadlines, medical appointments, personal deadlines, and the Super Bowl all collide!  You frantically go from one thing to the next, hoping that you have not overlooked some significant detail.  Thank God I made myself relax last night so that I could watch what turned out to be one of the most boring Super Bowls in recent memory.  Well, at least the Game of Thrones commercial was cool!  No spoilers, but it's always shocking the characters they decide to kill off!

Rewind to Last Wednesday (1/30/2019), Meet the Oncologist

I had my first Medical Oncology appointment this past Wednesday afternoon with Dr. Kamal N. Ummed of Georgia Cancer Specialists (affiliated with Northside Hospital Cancer Institute), in Alpharetta. 

Dr. Ummed has over 15 years of experience as a medical oncologist and has recently taken over treating all sarcoma patients (previously under the care of Dr. Gina D'Amato, who has since moved on to a hospital in Miami).  In addition to having an amazing haircut, Dr. Ummed stuck me as extremely caring, compassionate, meticulous, and thorough.  I kid you not, he spent over an hour with me discussing my history with Liposarcoma, my current situation, and the proposed treatment plan.  I made it clear to Dr. Ummed that I had a very specific schedule in mind with my treatment plan and he had no problems whatsoever getting me set up on my preferred dates.

Another really great thing about seeing Dr. Ummed is that he stays in close contact with Dr. Gina D'Amato (my Oncologist from 10 years ago).  Much of the direction and key decision making will come with her input.  What more could one possibly ask for?  I get to be treated by an amazingly cool and experienced medical oncologist locally who works with a team that includes a world-class sarcoma specialist.  Safe to say, I'm in good hands!

Here's a Summary of the Treatment Plan

• Prior to starting chemotherapy, I must first complete the following prerequisites:
• Baseline Echocardiogram (for monitoring heart health during treatment).
• Baseline pelvic MRI (if the one from 01/15/2019 is not considered "current" enough).
• Port placement surgery.  This port will be my main hookup for the chemo.
• All of these will be handled on Wednesday, February 6, 2019.
• The plan calls for 6 rounds of high-dose Yondelis (pronounced yon-DEH-lis), given as a 24-hour backpack infusion.
• Round #1 will start on Monday, February 11, 2019, just one week from today!
• Each round (or cycle) is 3 weeks in total duration.
• Similar to my treatment 10 years ago, I would expect the first 2 weeks of each cycle to be fairly rough, with recovery coming the 3rd week.  But more on that later.
• After 2 rounds, another MRI will be done to verify that the chemo is working as expected.  If shrinkage is not seen after 2 rounds, alternative treatments will have to be evaluated.
• Other checkpoints will be after rounds 4 and 6.

This schedule put me well into June before I move on to the "next phase", which quite honestly is undecided at this time.  Surgery still scares me to death and does not guarantee a cancer-free future.  My preference at the moment is to seek Proton Therapy as the next step and forgo the surgery altogether.  In reality though, I think my best option come June is to seek out an expert 2nd opinion on the matter.  Certainly somebody at MD Anderson (in Houston, Texas), the Mayo Clinic (in Jacksonville, Florida), or even Sloan Kettering (in NYC) would have something definitive to say.

Outpouring of Support

Both Holly and I have been absolutely blown away with the outpouring of support we've received in these past few weeks.  We've received a number of calls, letters, emails, and gifts from longtime friends, acquaintances, current and former colleagues, neighbors, etc.  It's an entire community of people, spread all across the country and even along our very own cul-de-sac, that are actively rallying behind us.  The enthusiasm is contagious and emboldens my resolve to face what is ahead.  It's so good to know that I am not doing this alone!

Also with me every step of the way are the following "battle buddies":

Click to Enlarge

The Care Bear Story

As you may recall, it was nearly 10 years ago that my wife Holly went through Breast Cancer treatment.  Yes, just as I was finishing up my sarcoma treatment, we got the news about her diagnosis.  That summer of 2009 during her treatment, we sent our boys to a day camp at the nearby Cannon United Methodist church.  It turns out that they have an active cancer support group and when they found out about Holly's condition, the group gave her a pink Care Bear.  This was no off-the-shelve Care Bear, it was custom made.  At the time though, Holly had no idea who actually made these.

Fast-forward another 9 years, to the summer of 2018, and Holly finds herself at a new job with a coworker named Jan.  After being there for a little while, they discovered that they had something in common: Jan was the person who made the pink Care Bear all those years prior.  What an incredible "coincidence"!  After hearing about my diagnosis, Jan put together this super cool part Florida Gator, part Tennessee Volunteer Care Bear.  To me this symbolizes not only that that have we both been through this before, but that we are inseparably sewn together in this journey and that the role of caregiver is every bit as significant (and burdensome) as the role of patient.  What amazing handiwork to pull this off.  Thank you Jan!

Dammit Doll

This thoughtful and funny gift is from one of Holly's cousin Lisa in Colorado.  Not sure that you can read the inscription, but it says:

Whenever things don't go so well, and you want to hit the wall and yell, here's a little Dammit Doll, that you can't do without.  Just grasp it firmly by the legs and find a place to slam it.  And as you whack the stuffing out yell "Dammit! Dammit! Dammit!"

Given that this package is from the cannabis-friendly state of Colorado, I suspect there's more than just "stuffing" inside.  Oh wait, I just checked, and it's just stuffing.  Dammit! Dammit! Dammit!  :)

"Bucket List" Trip Planned

In order to make it through difficult times, I find that it's best to have distractions and something to look forward to.  Work keeps me busy, which I'm convinced is far better than being idle and letting your mind wonder to dangerous "what if . . ." questions.  As to something to look forward to, how about a 7-Night Mediterranean Cruise on the Disney Magic with the family!

Click to Enlarge

I realize that this may sound like some high-priced, extravagant trip, but I assure you it is being done on a budget.  By cancelling (with full refund) a planned anniversary cruise for this October and putting all of our Disney Vacation Club points towards this trip, it is currently costing us $0.00.  The only real cost will be the round-trip airfare to Barcelona (which is currently "sky high") and any miscellaneous excursions/incidentals.  I'm keeping a close eye now on Google Flights and Priceline.com for deals.

Prior to booking this trip, I looked at the calendar and saw that this cruise perfectly aligned with the "good week" of my 5th round of chemo.  Yes, it would mean that the 6th round would be delayed by a week, but so be it!  This is something that Holly and I always wanted to do and it doubles as a great "senior trip" for our younger boy Kyle, who graduates High School just days before we sail.

The way I justified this expenditure to Holly was as follows:

Before I "sail off into the sunset", I want to "sail, off into the sunset"!

Thankfully she understood my (attempt at) humor and agreed that this was a good thing for the family.

We can't wait!

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.

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.