Access Denied!

For many cancer patients, an "access" is an essential part of the treatment plan.  Some chemo types, including Yondelis (the one I'm on), are classified as "vesicants" and, therefore, require some type of vascular access device.  This is necessary so that the chemo is released very close to the heart and quickly mixed into the bloodstream.  A regular IV will not suffice for such medications.  These devices are both necessary and lifesaving.

They can also be very problematic.  In the past 3 months, I've had to deal with the following challenges:

Port Infection 

This led to an ER visit in late August, followed by some strong antibiotics (which did not work), followed by a "stat" port removal on August 31 (due to the aggressive spread of the infection).  Here's a picture just minutes before the removal:

Aug 31: Infection on day of port removal

As I had discovered last July, there's something about Yondelis that tends to lead to more frequent port-a-cath infections.  But this infection was far worse than what I had 13 months prior and nothing I would want to repeat.

Chest Abscess

Removing the port should have been the end of the infection.  Things did improve initially, but within a week, a chest abscess had formed. This led to another ER visit, subsequent hospitalization, and lots of antibiotics:

Sept 5: Chest Abscess

PICC Line Placement (and ongoing maintenance)

With the port-a-cath removed and my infection finally cleared up, it was time to get a new access device.  Having been burned twice now with port infections, I figured I would try something new this time.  The choices were:

1. Chest mounted central venous catheter
2. Arm mounted PICC line

Both types are a royal pain to maintain!  First off, each "lumen" (my line has 3) needs to be flushed daily with a saline syringe and re-capped with a new green cap.  Oh, and good luck getting those caps since you can't get them from any pharmacy!  Secondly, that covering over the access is a very special dressing that needs to be changed weekly by a Registered Nurse.  So, if you're not able to get home healthcare, this means at least weekly trips to your infusion center to get that changed.  And, whatever you do, don't get it wet or sweaty, because that will require an immediate dressing change.

Sept 15: PICC Line (right arm)

Though the doctor encouraged the chest access, I opted for the one in the arm because it made showering easier and had the distinct advantage of not getting sweaty when I walked.  After all, how was I ever going to go on sweaty weekend walks if a chest access?

Though this reasoning seemed sound at the time, I found out later that there are some distinct disadvantages to having a PICC Line.

The Trouble with PICC Lines

I should have listened to my doctor and gone with the chest access.  And, frankly, he should have known better than to let me get a PICC Line.  I'm pretty sure he knows now, but I'd really prefer not to be the patient who, together, learns this important lesson.

Let me count problems with PICC lines:

1. Nobody "owns" it -- At Northside, if there are any issues with a port-a-cath or chest catheter, there's a doctor over in radiology that "owns" that device.  In contrast, the PICC line is installed by a team of experienced nurses and then handed over to the referring physician (my oncologist) for anything going forward.  Whatever issues or concerns that arise must largely be driven by the patient and their oncologist.  Neither I nor my oncologist was aware of this little fact.
2. PICC Lines can pull out -- When originally placed, the tip of the line was (purposely) very close to the heart.  With normal movement of the body and weekly dressing changes, however, the line can start pulling out, causing the tip to move.  The nurse told me that if it comes out by 2 cm or more, I would need to get a chest X-ray to verify the location of the tip.  Within 2 months, mine had already come out 2 cm!  Contrast this with the chest catheter, which is sewn into your skin to ensure it will not move.
3. PICC Lines can move within your body -- Since my line had visibly come out by 2 cm, I asked my oncologist to order an X-ray and have the tip placement verified.  The X-Ray showed that the tip was now about 4 cm from where it had been placed originally.  This means that, in addition to the visible 2 cm of movement outside of my body, the line had also moved 2 cm within my body!  Though a radiologist confirmed that the tip was still in a good place for chemo, it's horrifying to think that the tip can move without me having any indication of this outside of my body. This is something that really doesn't happen with either port-a-caths or chest catheters, likely because the line inside the body is much shorter and your chest does not move like your arm and shoulder do.  Why is this tip location so important?  The short answer is because vesicants can do some serious damage to your body if not quickly mixed into the bloodstream.
4. PICC Lines can cause blood clots -- This one is arguably the worst of them all as it can lead to life-threatening pulmonary embolism, stroke, even death.  Just between us, it would really suck to successfully fight cancer for years only to be taken by an unexpected complication, such as a blood clot or serious infection.

Blood Clot!

Things were were all "normal" with my PICC line, though on Friday, November 19, I noticed some unusual numbness and tingling from the top of my right shoulder to my hand.  I ignored this for much of the day, but as the afternoon wore on, I starting getting concerned.  At around 4:00 that afternoon, I made the decision to head to the ER.

Though many tests were performed, it was ultimately the ultrasound of my right arm that showed a clot on the PICC line itself.  I was never given any details as to the exact size or location of the clot; hopefully such details will be forthcoming.

I was given a dose of Lovenox (blood thinner) prior to my discharge that evening.

Lovenox Injection

I'm now self-injecting these "cute" little shots twice a day.

What comes next?

What does come next?  Is the PICC line going to be taken out?  If so, when?  How long will I need to be on blood thinners?  For how long will I need to worry about the life-threatening aspects of clots?  (Actually, I'm trying not to ask those "dark" questions, but they do cross my mind.)  What impact is this going to have on the trip to Key West that Holly and I have planned in less than 2 weeks from now?

So many questions.  Hopefully this week I will have answers to all of those questions.

Things are not all 'doom and gloom'

Now I normally am not one to complain, and that's honestly not my intention here.  Once again, I'm just trying to keep it all real here and share the unvarnished truth about life as a Stage IV cancer patient.  I had a new set of scans done back on October 4 and I'm happy to report that things are still "stable" with my tumor.  That is indeed great news.  Now if only I could get an access that works and won't kill me!

Isn't surviving the cancer supposed to be the "hard" part?  I still find it surprising that, months after a port infection, I'm still having all sorts of issues with my access.  Frankly,  I'm just sick and tired of having unexpected medical issues, having to run to the ER, and seeing what little free time I have consumed by medical "maintenance" for my access.

I remain optimistic though that, after I get over this one last hurdle and get a better access, things will turn around for me.  During this Thanksgiving season, I am so thankful for a successful cancer treatment plan and hope/pray that treatment will become easier with a better access.

Happy Thanksgiving to all!

First Cancer, then Chemo, now Covid

Round #33

Having just completed Round #33 of my chemo this previous Friday (July 23), I knew that the weekend was going to be hard.  All weekends post chemo are hard, especially on Sunday, but this one somehow felt even worse than normal.  One of the possible contributors was the new drug Zometa, which I receive now every 3 rounds (those evenly divisible by 3) to help treat bone problems caused by my cancer.  The nurse at the infusion center did warn me that the Zometa may cause "flu-like symptoms" and to not immediately freak out if I was experiencing a slight fever, chills, or muscle and joint aches.  Affirmative on that, I was definitely feeling crappier than normal.  But Monday was right around the corner and I always start feeling better on Monday.

Case of the Mondays

I woke up Monday feeling very little improved from the previous day.  No matter, I made the "commute" to my work desk in the Living Room and put in a full day.  It wasn't until later that afternoon that I took my temperature for the first time: 100.1.  So slight fever, but probably still the Zometa.  I remarked at dinner that evening how food, and even water, wasn't tasting right anymore: it all had a metallic taste.  My fever later increased to 101 and then 102.  I eventually popped some Tylenol to knock it down so that I could sleep that night.

"Go to the ER"

With Tuesday feeling like a continuation of the previous days' symptoms, and still running a slight fever, Holly urged me to reach out to my Oncologist.  The nurse there quickly called me back and told me to "Go to the ER".  Holly drove and stayed with me the entire time in the ER.  I figured they would give me some much needed fluids, run some tests to identify the source of the infection, and send me back home in short order.  One of the first things they noticed, however, was my oxygen saturation was in the lower 90's and eventually fell as low as 89, at which point they put me on supplemental oxygen.  Chest x-ray was clear, breathing sounded clear, blood work was fairly normal, though cultures were pending.  A respiratory panel was ordered and, much to our surprise and that of the ER Doctor, came back positive for the SARS-CoV-2 virus.  Though breakthrough cases had been rare with "normal" Covid, they are becoming more common with this new Delta variant.  And for the immuno-compromised such as myself, they are even more common yet.  The best it seemed I could hope for was that the vaccine would help "prevent serious illness and death".  I was about to test that theory.

High Risk, High Reward

Though my symptoms were not yet serious, an Internist explained to us that the first several days of Covid often present with mere "flu-like" symptoms.  The concern, however, was that it can then transition into something far more consequential that can invade the lungs, heart, and even brain.  Given my recent chemotherapy and general inability to mount a sufficient immune response, the doctor did not hesitate to admit me to the hospital and begin treating me with the antiviral drug Remdesivir.  I was to receive 5 daily doses of this IV drug in all.  The goal of this drug is simple: prevent Covid from transitioning to its serious phase and possibly even reduce my overall recovery time.

"Say Your Goodbyes"

The real sobering moment came when they were ready to transfer me from the ER to my isolated hospital room.  The orderly casually said "Say your Goodbyes", so Holly and I said a quick and trivial "Goodbye".  It wasn't until seconds later, after my ER bed had rounded the corner and Holly was out of sight, that it hit me: could that have really been my last "goodbye"?  Oh my God!  What if it is?!?  Little did I know that these same fears were racing through Holly's head right then too.  Covid is a bitch and so many lives and relationships have been lost without ever having the chance to say a heartfelt goodbye.  My advice is to say "I love you" today as you might not have that opportunity tomorrow.

Covid Tracker, Magnetism, and 5G Signals

My insider look at Covid treatment and vaccines has led to some startling surprises.  While laying in my hospital bed, I felt a barely perceivable bump on my chest that didn't feel like part of my body.  After digging around a bit, I found this:

Covid tracker, magnetic sensors, 5G signal

Could I indeed have found the much talked about (but never seen) "tracker" that gets imbedded with your vaccination?  I was skeptical at first, but kept an open mind as I investigated further.  I noticed that the tracker had certain wires coming out if it that were attached to sensor-like objects elsewhere on my chest.  But how in the world did these "sensors" possibly stick to my chest in a vertical position?  They must be magnetically attracted to the tracker implanted during my vaccination!  And if that's not convincing, just look at the monitor as it is clearly showing a 5G broadcast signal.

The investigation continued to the backside of the tracker where my preliminary observations were confirmed:

"COVID" tracker

Right there, in plain English, I found the manufacturer name starting with "COVID", a tag labeled "Biomedical Engineering", and a hand-written date coinciding with my vaccination date!  Even the most ardent skeptic has to take pause here as the conclusion is obvious and inescapable: COVID TRACKERS ARE REAL!

Not Out of the Woods Yet

My fever broke during my first night at the hospital and I was able to come off of supplemental oxygen later that morning.  I was eventually discharged on Saturday (7/31) and sent home, where I must remain quarantined for 14 days from the onset of symptoms.  Holly and the boys have all tested negative for Covid and the boys are definitely keeping their distance (i.e., camping out with their gaming PCs in the basement).  I'm still somewhat weak and not completely out of the woods quite yet, though some sense of "normalcy" has returned.  I have also had to promise to not drink out of the milk and cream containers directly and to not steal sips of Holly's wine when her back is turned.  Such are the sacrifices one must make while quarantined.

Beware: Delta Variant Lurking

In closing, I just wanted to sound the alarm about the new Delta variant.  It spreads more easily than Ebola as well as viruses that cause MERS, SARS, smallpox, seasonal flu and the common cold.  Folks, this is real stuff and it is truly dangerous!  Having said that, I do not wish to live in isolation forever and I'm not particularly fond of wearing masks.  During Covid, we have still gone out to restaurants and all, but we've tried to always be careful.  We've gotten our entire family vaccinated, eat outdoors at restaurants whenever possible, and try to apply some common sense reasoning to every situation.  

In fact, the weekend prior to getting ill, Holly and I took a trip to Jacksonville where we ate outside at several restaurants.  My mistake though was ignoring how the Delta variant is surging down there currently and not realizing how vulnerable I actually am, even during non-treatment weeks.  We went down there primarily to look at houses and neighborhoods that we could move and retire to in a few years.  Little did I know that I nearly "bought the farm" in Georgia instead.

So love on your friends and family while you can, enjoy life at every moment, but be more vigilant now than ever before!  We are all not out of the woods yet!

Chemo Round #32 Complete and All is STILL Well!

I'm very happy to report that, after having been diagnosed with metastatic (Stage 4) high-grade Myxoid Liposarcoma nearly 2 1/2 years ago, things are still going well for me and I remain "stable". But these past 4 months have not been without a few scares. Worded differently, this post could have just as easily been titled: "The Rumors of My Impending Death have been Greatly Exaggerated!".  Truth be told, these "rumors" all originated from me, despite the fact that they were based upon real physical symptoms in the area of my tumor as well as blood test results.  Below is the gauntlet of tests I've been through in the past 4 months.

Second Scan Opinion from Memorial Sloan Kettering (MSK)

Given that Northside Radiologies have described my scans as "stable" now for the past 2 years, I wanted to verify this analysis by sending my scans up to MSK for a second opinion.  I was especially motivated to do this because of the occasional pain I would sense coming from my right pelvis area and right lower back.  Honestly it's a little scary because it's a constant reminder that the tumor is telling me "I'm still here and I'm still fighting!"  Be that as it may, I'm still here and I'm still fighting too!  Furthermore, I'm taking every precaution possible to ensure that this tumor doesn't make any sneaky advances either elsewhere in my body or at the main source.

It took about a month to get those films to be sent up there, arrange to have them read, and then schedule a visit with Dr. Yoshiya Yamada.  Remember him from August 2019?  Thankfully this time I did not have to fly up to NYC as MSK now does telehealth visits!  (Something good had to come out the pandemic, right?)  I ended up speaking with Dr. Yamada during the afternoon of June 2nd.  Well I'll cut right to the chase and say that they (MSK) agree with Northside's reading and think that I'm "stable" too!  He went on to say that they think I'm doing "exceedingly well" and there is "strong evidence that the Yondelis is working for me".  He even threw in the word "miraculous".

So, test #1 complete -- passed with flying colors.  But what about this other thing that's threatening to kill me???  Keep reading . . . .

Blood Test Results Indicate "Much Worse Than Normal" Kidney Numbers

For those of you with high reading comprehension (and a very good memory), I was long ago diagnosed with Stage II Chronic Kidney Disease.  The origins of this in my system have been traced back to the original chemotherapy I had 13 years ago.  Key indicators of trouble are high readings for Creatinine and low readings for GFR.  My Creatinine "normally" sits around 1.6-1.7 and my GFR around 44-47, but on April 22, I was at 2.0 and 36, respectively.  One week later these numbers were at 2.1 and 34, the worst I had ever seen.  Even my oncologist was concerned and suggested seeing my nephrologist, who was booked up through June 3rd.

I'll be honest and say this led to a great deal of worry on my part.  I essentially had two diseases, each threatening to kill me in their own special way.  If my kidney numbers continued to get worse, especially at the rate they were going, it could force me to have to start dialysis.  And why would this be deadly?  Other than the fact that dialysis would be a permanent disability, it would mean stopping my chemotherapy treatments, thereby allowing the cancer to go unchecked in my system.  Quite frankly, I hope this is something I'll never have to deal with as giving up would be a real option, and I do not want to leave that way.

In any case, knowing that Creatinine and GFR are often tightly linked to the consumption of water (where bad numbers could mean you're not getting enough water), I rededicated myself to regular water consumption.  To keep myself honest with my goals, I purchased a 1 gallon reusable water bottle from Amazon with time marks on the side of it to pace my drinking all day long.  Sometimes I drink more than this gallon, but never less.

The result?  My last three sets of bloodwork show me back in my "normal" range!  And the nephrologist's take on the bad numbers?  Simply put, he called it an "anomaly" and likely related to inadequate hydration near those test days.  Bottom line: he's not worried . . . so why should I?!?

New CT-Scan: Chest, Abdomen, Pelvis on June 17

So given the title of my post, you must already know that my results were again reported as "stable".  There are certainly several things they are keeping an eye on in various places (and have been for quite some time), but these other areas have remained stable too.

As the saying goes: "All's well that ends well!"  And who could ask for a better ending than this?!?

Keeping on, 

 --Dave

MRI Results Indicate “Stable” Tumor

The news from my previous post (that my tumor "may be slightly increased in size") apparently bothered me more than I let on.  Originally I was going to get my follow-up MRI in "another 3-4 weeks".  The more I thought about it though, the more concerned I became.  I mean, why wouldn't anyone jump on this ASAP?  So I did.  I got my MRI on the February 20th and my results today:

Stable right sacral mass . . . .

So with that great news, I was told I was ready for Round #28 of Yondelis!  Man, I think I'm ready for a HAPPY DANCE!  How 'bout an encore performance of my favorite cancer fighting song, Love Pack:

This song is all thanks to my friend and, fellow Liposarcoma Survivor, and all-around talented guy Robbie Long.  Apparently my friend has some cool connections too.  The keyboard arrangement in this song I'm told was done by the keyboardist from the 80's band Cameo.  Remember Word UP!?  Pretty cool right!

A warning though: if you're as bad as I am with dancing, do it in private!  :)

Keep on!!

--Dave

Bigger is NOT Better!!!

 At least that’s true if you’re talking about tumor size.  So I had a CT-Scan of Chest, Abdomen, and Pelvis (CAP) this past Wednesday morning and just got the results from my doctor today:

Persistent right pelvis mass which may have slightly increased in size since prior examination.

I emphasize the word may.  I’m no Radiologist but I do get a copy of and examine my scans every time.  The software that comes with the scan DVD even allows you to take measurements, which I also do every time.  This being a widespread scan of CAP, rather than a higher resolution MRI of just the pelvis, makes it harder to take accurate measurements.  Honestly, you get different measurements depending upon the angle/orientation you are viewing.  This time in particular I had a harder time getting the exact view I had measured in previous scans.  I will also add that this was a different Radiologist and interpretations can and do vary slightly.

All that to say: neither I nor my Oncologist are in “freak out” mode quite yet.  The plan is to do a follow-up MRI, but that won’t be for another 3-4 weeks.  That scan should provide something more definitive than may.  Hopefully I’ll get another “stable” report, but if it’s anything worse, I’ll deal with it at that time.

Just keeping it real and honest.  

Thanks for reading and have a great weekend!

—Dave

Happy Anniversary!

Like a typical man, I forgot that today was my cancer diagnosis anniversary.  Not kidding, Holly had to remind me!  Yes, we all know that she is my “better half”!

It’s almost hard to believe that it was 2 years ago today that scans the morning of 01/15/2019 revealed a metastatic recurrence of liposarcoma in my right pelvis.  Things were going so well for so long being cancer free  (10 years) that I just couldn’t believe what I was hearing.  In the subsequent days and weeks, the news was devastating. Just a month earlier, Holly and I had visited Nocatee, Florida and were planning to move there after the boys were out of college (if not even earlier).  But with that news, all of those plans/dreams were put on indefinite hold.

The good news though is I’m still around and things have been “stable” for nearly 1 1/2 years.  I choose to think of this date not so much as a cancer anniversary but more of a survivorship anniversary.  Hopefully things will remain stable for years to come.  

More scans coming on 1/25, so please keep me in your thoughts.

Final thought: always out your spouse first, especially on an anniversary!