Friday, December 11, 2020

A New Wrinkle: Anemia

 In the last couple of weeks I've noticed myself feeling much more tired and colder than normal.  At first I figured it was me just being tired of 2020, Covid-19, and the shorter/colder days, as I'm sure many of you can relate.  But in my last round of chemo (on December 1), labs taken prior to the chemo showed my Hemoglobin hit an all new low of 9.5 gm/dL.  A normal reading for men starts at 14.0 gm/dL (according to Cleveland Clinic).  Previously my results sometimes ran slightly low (as in the high 12 - 13 range), but this represents a significant drop.

And of course for every symptom there are new tests that can and must be run.  In this case, it's an Upper Endoscopy combined with Colonoscopy.  Oh yeah!  I was overdue for that anyways (really)!  I am so looking forward to spending an evening in the bathroom followed by an outpatient procedure (yes, pun always intended).  I do have a bit of a reprieve though before this happens.  Apparently everyone wants to spend their flex dollars on doing this at the end of year.  So, this means they are booked well into January.  My appointment is scheduled for Friday, January 22, 2021, in the morning.

Finally, I wanted to mention that I went back and forth in my mind as to whether or not I should even do this post.  As you probably know, I don't often whine and complain (though wine and celebrate, yes).  But given that how I feel is apparently tied to a physical/medical issue, I opted to share.  My mission from the beginning of this blog (which is now well over 12 years old!) has been to show what really happens to people when they go through cancer treatment.  No sugar coating here, just the raw, unvarnished truth.  For the last 15 months, I've had nothing whatsoever to report other than things were remaining "stable".  This latest issue is hopefully temporary and not the result of something more serious.

Also pending for January is a new set of scans, but that date and type of scan has yet to be selected.

In case you don't hear from me prior to the January "festivities", I wanted to wish you all a Merry Christmas, Happy Hanukkah, and a blessed New Year!

Sunday, October 25, 2020

Quarterly Update: Scans Remain Stable

Over the past month I've had two sets of scans: a CT scan of chest, abdomen, and pelvis and an MRI of my pelvis.  Both showed that the tumor has remained "stable".  That marks over year now that my tumor has remained stable, which is really quite amazing!

Next update will be after my next scan, which is TBD.

Take care, stay safe, and stay positive!

Friday, July 24, 2020

All is well!

It took a little longer than expected with my surgery today because they are required to first do a COVID-19 test prior to any surgery requiring anesthesia.  With all I've been through, I've gotten fairly used dealing with pain, especially pain that is temporary.  But I must admit that the Covid test is really not any fun at all.  They stick that thing all the way up and down your nose until you can feel it coming out in your throat!  It tickles in a weird/bad way and is very uncomfortable as it goes all the way down.  And just when you think it's over, it's time to repeat the process on your other nostril!

Thankfully they have the new rapid test there at Northside and can get results in just a little more than an hour.  At about the 1 hour 20 minute mark, the surgeon (Dr. Levy of Northside Radiology) came into the room to describe what was going to happen during the port replacement.  But given that I still had not heard the results of my test, I asked him.  His immediate response was "Oh you're positive".  "What!?!" I responded.  He went on to explain, with a wink and a smile, "you're positively going to get this surgery because your covid test came back negative!".  Yup, I'm a victim of my own sense of humor as this is exactly the sort of thing I would say if I were in his shoes.  But all kidding aside, he was great and his supporting team of nurses and techs were among the best I've ever seen!

New port in green, old port area in red, painful area in yellow
I stayed mostly awake during the surgery but felt no pain other than the initial incision.  Post Op was a breeze too; I scarfed down a turkey sandwich, drank a ginger ale, and took home a couple of packs of Oreos and other snacks.  Six hours later as I'm writing this post, I'm feeling the pain set in (especially in the area show in yellow), but it's not all that bad . . . I've had much worse.  It is important though to try to stay ahead of the pain, so I'll be taking another pain pill soon and head to bed.

Thank you everyone who said a prayer for me or sent positive vibes my way during this procedure.  I felt it all!  Between your support/caring and the awesome medical team at Northside, this was a big success and I can put it all behind me.

Have a great weekend everyone!

Thursday, July 23, 2020

Port replacement surgery scheduled for Friday morning

So I ended up being sent to Dr. Ronald Trible of Georgia Infectious Diseases.  To him it was not conclusive as to whether I had a port infection, skin infection, or just a subdermal hematoma.  But, given the issues I've been having of late with my port not wanting to show a blood return (something not previously reported here), and given that I am just 2 weeks away from my next scheduled round of chemo, he said that probably the best thing we could do would be to replace the port.  Considering that I had already gone longer than most patients getting Yondelis, this feels like the right answer to me.  I especially like the fact that my chemo schedule won't slip!

I was also given a prescription to a more powerful antibiotic: Linezolid.  This will be of great benefit if what I have is either a port infection or a skin infection.

Surgery is Friday morning at 11:00am.  I'm not expecting this to be a big deal, though I am expecting to be sore for several weeks.  The best part though is that now I will have matching scars on both sides of my chest!

Sunday, July 19, 2020

Florida Vacation, Infected Ports

Hello from sunny, hot, and humid Florida!
Siesta Key Sunset
That's right, Holly and I went on a quick vacation over the July 4th weekend to Siesta Key (just south of Tampa).  The beach was beautiful and the weather was nice, but nothing is really going to feel the same until the darn coronavirus thing is over.  With bars closed and us not daring to eat inside at any restaurants, pretty much the best we could do was takeout . . . and the occasional patio breakfast.  We did our best though to social distance and wear masks when appropriate.  Given that coronavirus cases were/are spiraling out of control there in FL, I'm just happy to have gotten back home safely and, two weeks later, still be virus free!

To be clear, we might be virus free, but apparently not infection free.  It turns out that my chemotherapy port (surgically implanted in my right chest) appears to be brewing an infection.  I noticed several days ago that something was wrong because the skin was reddish in color and very sensitive above the port. 

My oncologist (Dr. Ummed) took a look at this last Thursday and confirmed that this was the early stages of a port infection.  He also pointed out that he has seen a number of port infections specifically with those getting Yondelis.  In fact, he added, I've gone longer (1.5 years) than most of his Yondelis patients with avoiding a port infection.  He then sent me to the infusion room for IV antibiotics and home with a prescription of oral antibiotics. 

As I write this post (three days later), I'm unfortunately not seeing any improvement.  In fact, it seems to have gotten slightly worse.  So I'll definitely be following up with Dr. Ummed tomorrow.

Barring some sort of miracle, I think that ultimately the port is going to have to be removed and replaced with a new port, this time in my left chest.  Normally I wouldn't be all that concerned about this sort of thing, especially since it is "common" with Yondelis patients.  But given this coronavirus thing that's going on, I really would prefer avoiding the hospital and surgery at this particular point in time.  Oh well, it's out of my control, and I'll just have to do whatever I have to do to rid the infection and stay on a chemotherapy treatment schedule.

Oh and one more fun fact worth mentioning: it is not possible to Yondelis administered by direct IV; you must have a port!  Why?  Because apparently Yondelis is very dangerous if it enters your body outside of the bloodstream.  The port guarantees that the Yondelis goes straight to the bloodstream whereas the needle with an IV could possible move outside of your vein during the 24-hour infusion process.  Think about it, you have to take your chemo backpack to bed with you at night.  Can you be sure you don't roll over strangely or do something to cause that needle to penetrate outside your vein and have Yondelis go directly into your body?  The port ensures that you don't have to take that risk . . . though it can get infected.  Always complications!

That's all for now.  I'll be sure to keep you posted with the outcome of this port issue.

Tuesday, May 26, 2020

Scan Results Remain "Stable"

I know it's been a while since my last update, but quite honestly, there's been nothing new to report.  I'm still receiving Yondelis treatments every 4 weeks and Yondelis and I are still getting along.

I did, however, have 2 new scans done at the end of last week:
  1. A "head to toe" PET/CT scan, the first I've ever had
  2. An MRI of my pelvis/sacrum
The results came in just today for those and both indicate:
  1. No significant growth or evidence of disease progression of dominant lesion.
  2. No evidence of further metastatic disease elsewhere in the body.
So things remain as they have since September 2019: stable.  I couldn't be happier with the results!

I also wanted to add a few more details about the PET/CT scan since this is such a unique scan.  Actually it's two different scans: a PET scan combined with a CT scan.  These scans are taken separately (minutes apart from each other), both from the same machine and with the patient unmoved the entire time.  Through some fancy software, these two scans can be viewed independently or together as a composite image.

About an hour before the scan starts, you get an injection of radiative sugar known as FDG.  Since cancer cells take up this FDG sugar, the PET scanning machine is able to measure the radiation signal and identify "hot" spots.  The more FDG the cancer cell takes up, the "hotter" it is on the scan.  The "hotness" of an area is measured as a Standardized Uptake Value (SUV), ranging from 0 to 16.  Anything with an SUV greater than 2.0 is suggestive of malignancy.

So if I haven't put you to sleep yet, you must be wondering: what is the SUV of your tumor?  It reported in at a relatively mild SUV of 2.5, which is not so hot (in all the good ways).  According to Dr. Ummed, this indicates that the tumor is not very active, further emphasizing the stable characteristics we have observed for the past 8 months.  Again, very good news!

In other news, Round #19 starts on June 11.  But no worries; all is good here!

Tuesday, February 25, 2020

"Stable" MRI Results; Round #15 Started Today!

Hello!  Long time, no post!  Yes, I am still alive and continue doing well with the treatment, working full time, and loving life!  Here's a recent picture of us while vacationing in Florida:
At JBs Fish Camp

Returning now to my treatment status . . . .

Back in December, I mentioned that I was due for a follow-up MRI here in February.  I had that scan back on February 16 and the results indicate that my tumor is "stable".  It was actually noted as "stable" back in December too, which is really just a nice way of saying that it hasn't shrunk (or grown or metastasized) since my September 2019 scans (5 full months).  I'd prefer to see shrinkage!

After having a long talk with my Oncologist (Dr. Ummed), he has convinced me that "stable" is actually a good thing and that tumors will stop shrinking at some point.  And given that I've been tolerating the Yondelis quite well now over the past 10+ rounds, he felt there was no need to either increase my dosage or frequency of chemo.  It's just not worth the increased risk of toxicity when we are already seeing stable/controlled results with the current dosage schedule.  I'm all good with that doctorly wisdom and all, so let's just hope that it remains stable . . . for years to come!

Also, in my previous post I mentioned that they had found a "new soft tissue edema enhancement".  This blip still shows up in my latest scans, though apparently "stable" as well.  So I'm just not going to worry about it.  Not now at least!

That's all I have for you!  Expect another update after my next scan, which is probably 2 - 3 months away (TBD).

Wednesday, January 1, 2020

Happy New Year!

2019: The Year in Review

What a whirlwind of emotions 2019 was after getting re-diagnosed with a disease I thought I had beaten 10 years earlier.  Shock, surprise, denial and disbelief: those words certainly all apply.  But as the year drew to a close, it has become clear that 2019 was not so bad after all!  Consider the following:
  • Though diagnosed with Stage 4 metastatic cancer, there is currently no evidence that the disease has spread beyond my pelvic region.  Obviously that is a far better scenario than having it spread throughout my body.
  • We have seen slow yet steady shrinkage of the tumor since I started on Yondelis back in February.
  • The current treatment plan has been confirmed by Memorial Sloan Kettering (MSK), an NCI-designated facility and leader in sarcoma research and treatment.
  • I currently have the best health insurance I've ever had in my life.  Few providers would cover out-of-state second opinions and/or treatment, but the plan I'm on now does!
  • My mobility has thus far been unaffected by the tumor.  Furthermore, given how smoothly the treatments have been going these past 9 months, I have been able to keep working full time without the need to go on disability.
  • Our family was able to go on a "trip of a lifetime" cruise to Spain, Italy, and France in the early part of summer.  Though expensive, I have no regrets whatsoever about going on this very special family trip.  Those memories will last a lifetime!
  • My younger boy (Kyle) graduated from Brookwood High School and has completed his first semester in Art and Digital Animation at Kennesaw State University.  Both he and his older brother (Bryce) are doing very well in college.
  • Had a wonderful time with friends, family, and neighbors over my birthday.  And just two months later, we had a fantastic Thanksgiving reunion with the Holbrook family here in Atlanta.  These relationships are priceless!
So yeah, not so bad of a year after all!

Recent Scan Results Raise New Concerns

I had a Pelvis MRI this past weekend (on 12/28/2019) and just got the results back for that on Monday (12/30/2019).  Unlike all previous scans, which showed at least some shrinkage every time, this scan shows virtually no difference from my previous scan of 3 1/2 months ago.  Furthermore, the radiology report indicates some sort of "new soft tissue edema enhancement noted along the right lateral ischial tuberosity [i.e., bottom right butt cheek bone] of uncertain etiology.  A new focus of disease cannot be excluded."  This is definitely not the news we were wanting to hear.  So what changed?

One thing that has changed is that my chemo schedule has gone from every 3 1/2 weeks to every 4 weeks.  Originally I was getting chemo every 3 weeks, but that was just too hard on my body and my schedule, so Dr. Ummed (my Oncologist at Georgia Cancer Specialists) agreed it should be fine to stretch this from 3 to 3 1/2 weeks.  And with the results from my September scan still showing promise, the chemo schedule was extended once more to every 4 weeks.  Therefore, it is possible that perhaps I need to either up my dosage of Yondelis, or increase the frequency of my treatments (neither of which is easy).  For the time being, however, Dr. Ummed wants to stick with the current dosage and schedule and then rescan a bit earlier, such as in the February or March timeframe.  Based upon those results, we'll consider our options at that time.

Also a possibility is perhaps the tumor is building up resistance to Yondelis.  That would actually be the worst case scenario, so let's not go there quite yet.

And let's not forget that radiation at MSK is always an option for me to consider.  It's also an option I do not wish to rush, given the potential for life-changing complications.  I also need to stop over-analyzing the situation now and just sit tight until I get my next scan results, which will provide a clearer indication as to where things are headed.  Like many things in life though, this is easier said than done!

2020: "The Power of Hope"

Yes, "The Power of Hope"!  That was the theme for the 2020 Rose Parade . . . and it's a good theme for me in this coming year too.  With health concerns still abounding, I need a little hope this year to keep me going.  Don't we all?!?

But what is "hope"?  For me, I prefer to think of it as an action, something positive that a person does that makes somebody's day a little brighter:
  • It's the friend that makes you laugh.  
  • It's neighbors who smile and wave whenever you're around
  • It's family who is always there when you need them most
  • It's the beaming smile on your spouse's face
  • It's people showing compassion to strangers and those in need because it's the right thing to do
  • It's people who "pay it forward"
Perhaps most importantly, hope is not all about just receiving.  Hope can be found in the giving and the doing as well.  It's very contagious that way.

As we approach the year ahead, may we all find (and give) hope in large doses!