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.