Tuesday, March 18, 2014

5 Years NED!

Great news: my CT results from a couple weeks back were 'all clear' and today marks 5 years ago to the day that I had my liposarcoma tumor excised from my left leg.  Given that was the last step in the treatment process, I've made it 5 years (and still counting) with No Evidence of Disease.  This is a big milestone for any cancer patient, and I'm happy to have hit it.

While I was in the thick of my treatment, there were literally dozens of people who were supporting me and my family in so many different ways.  Friends and neighbors dropped by to wish me well and bring us meals; that was a godsend!  Family came from near and far to support me, and were always there when I needed them most.  Coworkers (both past and present) posted humorous and supporting comments on this blog, which encouraged me daily.  Bosses gave me every type of flexibility I needed with my job and made it abundantly clear that they expected me back.  It's hard to express how important that feeling of being wanted, appreciated, and cared for means to a new cancer patient, but my friends, family, and coworkers all instinctively knew how to deliver, and I am forever grateful!

Perhaps the biggest surprise was how much encouragement I would receive from people I didn't even know.  A number of 'total strangers' (many of whom were sarcoma survivors) posted the kindest words of encouragement on this blog.  No doubt those words got me through some very difficult times.  Also a surprise was the camaraderie and words of wisdom I received from my "chemo buddies" in the Sarcoma ward.  They, being ahead of me in the treatment schedule, were able to speak as veterans and let me know first-hand the sorts of side-effects and complications they had experienced.  This helped me immensely as my chemotherapy was fraught with complications.

And finally, I must thank the wonderful and caring Emory doctors and nurses who took such great care of me.  Dr. Gina D'Amato (my main oncologist) always lit up the room with her bright smile.  The chemo was indeed "tough love" (as she described it), but she monitored the results carefully, showed me that the treatment was working, and gave me the courage to keep going. Of course she was supported by the many great nurses there at Emory Midtown (formerly Crawford Long), who I got to know well during those 5 months.  Dr. Karen Godette was my radiation oncologist, and I just loved her crew of nurses and radiation techs who I saw nearly every day for 5 weeks.  Last but not least is Dr. David Monson, my orthopedic oncologist and all-around great guy.  He was the doctor responsible for my initial biopsy, later the surgery, and now my routine scans.  His calm demeanor and straight talk are hallmarks of his practice.  Thank you all!

Speaking of scans, the cool thing about hitting the 5-year mark is that my scan schedule drops to just once a year.  However, since my last scan was just a chest CT, Dr. Monson has scheduled me for a complete set of scans (CAP CT and MRI of left leg) on August 26th.  That will become my new 'baseline' and I will switch to annual scans thereafter.

Thanks for taking the time to read this.  We'll talk again in about 5 months!

Sunday, October 6, 2013

August Scans "All Clear"

My apologies for this late posting, but my 6-month CAP CT-scans from back on August 21 were indeed 'All Clear'.  My next set of scans will be a chest-only CT on February 25, 2014.  That scan date is very close to my 5-year NED anniversary, which will be March 18, 2014.  My how time flies!

My apologies as well for not publishing recent reader comments until today.  A while back I had to disable auto-publishing of comments as my blog was filling with spam.  Yet there still are active readers and those that would like to publish useful and positive comments.  Going forward, I'll try to do better at publishing and/or responding to such comments in a timely manner, which shouldn't be hard since I just now figured out how trigger email notifications when there are comments awaiting moderation.  That said, should you ever wish to contact me directly, you can find my email address by scrolling down to Contributors, clicking on Dave Novak, and selecting the Email link under Contact me.

Thanks for reading and staying in touch!

Thursday, February 21, 2013

6-month chest CT "all Clear"

I had my 6-month follow-up scans this morning (chest-only CT) and my Orthopedic Oncologist (Dr. David Monson) just gave me the "all clear".  Yeah!

I'll be back on August 21 for the full Chest, Abdomen, and Pelvis CT (i.e., the one where I have to drinks that 'awesome' contrast).

Oh, and Happy Birthday Holly!  :)

Tuesday, October 2, 2012

Follow-Up MRI is clean!

Just got the call this morning from my Orthopedic Oncologist: "the MRI [from 9/28] revealed no suspicious lesions".  They did note that the MRI showed "a benign liver hemangiomas", but expressed no concern for it.  Bottom line is I'm still NED, and I'm very happy to stay that way.  Yeah!

Now, back to work and my 'normal' life!  :)

Friday, September 28, 2012

Double Take!

I got an interesting phone call the other day that I should to let you-all know about: it was from my Orthopedic Oncologist's Physician Assistant (i.e., the group that is responsible for my ongoing care and scanning). It went something like this:

  • PA: Mr. Novak, how are you doing?
  • Me: Ummm . . . fine??? You tell me! I can't help but be a little nervous whenever I get a call from you guys!
  • PA: Well, we were reviewing your latest CT-Scan and the official radiology report and have just a few concerns about that bump we saw on your kidney [something I, Dave Novak, never mentioned to anyone]. We really don't think it's anything more than a cyst like we said when we saw you last, but given that we don't do the CT-Scan with contrast and that it's been 4 years since we've had a detailed MRI done of your abdomen, we thought it best to get you set up for an MRI. Again, we don't think this is anything to be concerned about, but we'd like to take a closer look just to rule out any issues. 

Well, I have the MRI for this later today, at 5:00pm at Emory Midtown to be exact. And honestly, I'm dreading the drive far more than the results! I mean really, that drive from Cumming to downtown Atlanta during Friday rush-hour traffic is a real pain. But I'll be happy to just get it (the scan, that is) out of the way.

Hopefully I have the results next week, so expect more updates then. In the meantime, I'm not too concerned.  Why should I worry?  That won't change anything about what is or is not happening.

Until then . . .

 --Dave

Tuesday, August 21, 2012

August Scans . . . August Memories

Just a quick update to say that my 6-month CAP CT-scans were all clear. Yeah! Next scan will be chest CT only on February 21, 2013, which happens to be Holly's birthday (so it has to be good news, right?).

It's hard to believe that just over 4 years ago (on August 4, 2008) I started my first chemotherapy. Seems like forever ago . . . and almost like a different person. Did that really happen to me?!? I kid you not, I often have to read old posts just to remember 'Yeah, that really did happen!' I guess a significant part of me just doesn't even care to remember. And that's fine, because life goes on . . . and normalcy is a good thing. :)

And speaking of August 4, it was that date 3 years ago that Holly had her last chemotherapy treatment for breast cancer. She's doing just fine now, thankfully.

Next update in another 6 months!

All the best,

--Dave

Tuesday, February 21, 2012

Scans all clear!

My chest-only CT-scan was clear . . . as expected. But the best part is that because I'm just about to hit my 3-year NED mark, the doctor says that my scan schedule can shift to every 6 months. Yeah!

My doctor also tells me that 3 years NED is really a big milestone for high-grade sarcoma patients, as 90% of all recurrence would have revealed itself by now. Such recurrence (should it happen) would very likely show up in the chest, abdomen, or pelvis, and sometimes (but rarely) in the origin (my left thigh).

Talk to you in another 6 months!

Wednesday, October 19, 2011

Once again -- Scans All Clear!

Had CAP-CT scans yesterday and got the word that all was [still] clear. Yeah! Next set of scans is scheduled for February 21, 2012.

Until then . . .

Thursday, June 9, 2011

Scans all clear!

Just a quick update to let you-all know that my 4-month scans (chest CT & thigh MRI) today were both all clear! Yeah! Next scans (CAP CT) will be on October 18. Talk to you then.

Wednesday, April 13, 2011

2 Years, 2 Months, 3 Songs

Note: Some email clients block pictures/videos, so if no picture/video is present, you can click on the Bold Blue Title in the email and that will take you directly to this post at my blog site.

Well, it looks as though I missed an important blog update back on March 18, which was my 2-year NED (No Evidence of Disease) Anniversary.  Yes, it is a milestone and indeed I did celebrate, but nowadays I'm (publicly) just a bit more low-keyed about such anniversaries and my experience as a Sarcoma survivor (except perhaps when in the company of other survivors or patients).  With life and work back to "normal" (and with no pending surgeries and the like), I suppose this is a natural progression.

Things have certainly gone smoothly for me (as obviously the treatment worked and I've had virtually no known long-term complications from either the chemo or the radiation).  Almost too well . . . like a part of me is waiting and wondering when the next shoe will drop.  But I don't really worry about that (not actively at least).  Instead, my attitude (for the time being) is best described the by this song:

Lee Dewyze - Sweet Serendipity


My favorite lyrics from this song include:
...
[chorus]
And I’m doing just fine
I’m always landing on my feet
In the nic of time
And by the skin of my teeth
I ain’t gonna stress
Cause the worst ain’t happened yet
Somethings watching over me
Like Sweet Serendipity
Sweet Serendipity
I don’t ask for a lot
No nothing more than I need
Because I love what I got
Don’t need to play the lottery
I just want to be strong
At the end of the road
I don’t want to hold on
I want the strength to let go
[chorus]
Don’t look fate can only find you
You can’t choose for something to surprise you
Set sail without a destination
Just see where the wind will take you
You never know when you're gonna fall
But I'm not worried
No I'm not worried at all
[chorus]

Having said that, I'm well aware that others fighting cancer are not always as fortunate.  I was reminded of this fact just a few days ago when I found out that an old friend of mine died of ovarian cancer back on February 13, exactly two months ago today.  Her story is certainly a sad one and she went very quickly.  My sincere condolences to her husband and her family.  In her memory, and for her husband and family, I dedicate the following song:

Coldplay - Fix You


My favorite lyrics from this song include:
...
And the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse?
[chorus]
Lights will guide you home
And ignite your bones
And I will try to fix you
...
Tears stream down on your face
When you lose something you cannot replace
Tears stream down on your face
And on your face I... 
Tears stream down on your face
I promise you I will learn from my mistakes
Tears stream down on your face
And on your face I...
[chorus]

Yes, I know that song's a real tear-jerker, but it seemed to be appropriate.  Even so, let me try to pull you out of that potential depression you might find yourself in after hearing "Fix You" with the following upbeat song that I just love:

Andy Grammer - Keep Your Head Up


My favorite lyrics here include:
...
[chorus]
But you gotta keep your head up, oh,
And you can let your hair down, eh.
You gotta keep your head up, oh,
And you can let your hair down, eh.
I know it's hard, know it's hard,
To remember sometimes,
But you gotta keep your head up, oh,
And you can let your hair down, eh.
...
I'm seeing all the angles,
Starts to get tangled
I start to compromise
My life and the purpose.
Is it all worth it,
Am I gonna turn out fine?
Oh, you'll turn out fine.
Fine, oh, you'll turn out fine.
[chorus]
Only rainbows after rain
The sun will always come again.
It's a circle, circling,
Around again, it comes around again.
I say only rainbows after rain
The sun will always come again.
It's a circle, circling,
Around again, it comes around
[chorus]

I hope that you've enjoyed these songs and find encouragement from them.

You'll hear from me again mid-June with my next set of scans.  Take care!

Tuesday, February 15, 2011

"I am a Survivor" (or at least that's what they tell me)

Hey Everyone --

I had my quarterly scans today (CAP CT-Scan only this time) and all was clear.  Yeah!  Perhaps even better yet is the fact that, now that I'm nearly 2 years NED*, my scan schedule will drop to every 4 months going forward.  To help mark this anniversary, my Orthopedic Oncologist presented me with this hard-earned T-shirt:

Yes, I "doctored" the photo  :)

More outrageous celebration to follow on March 18, which is my "official" 2-year anniversary.  Until then, enjoy the rest of your week and always be thankful for good health!

* NED = No Evidence of Disease

Tuesday, February 1, 2011

Totally Free DNA Testing for Sarcoma Patients / Survivors

23andMe.com, a DNA research company, is now offering FREE DNA testing for those who have been diagnosed with Sarcoma. Their goal is to find at least 1,000 qualified individuals who have or have had sarcoma and to collect information regarding their experiences, environments, and responses to different therapies. They then will combine this information with the genetic data to find patterns that will help them better understand the biology of sarcoma. See https://www.23andme.com/sarcoma/ for the details.
According to one Sarcoma Oncologist that they quote: "There are clues that there are factors in our DNA that can contribute to the development of sarcomas of bone and soft tissues, but we still don't understand them very well. Now, through the novel 23andMe Sarcoma Community initiative, patients can take direct action to help make strides against their disease."
By all accounts this is a totally legit operation with a good reputation in the sarcoma community.  Thus far, over 500 sarcoma patients/survivors have already gotten involved with this initiative.  For that reason, I signed up for this the other day, a process which involved answering about a half dozen questions about my diagnosis, providing my contact information, and then going through an online confirmation process to order the DNA kit.  Since then, I've received an email response from 23andMe indicating that "you qualify to join the community and receive the 23andMe Personal Genome Service for free instead of the standard $199 plus a monthly subscription".
My correspondence with 23andMe.com also pointed me to the following FAQs about research at 23andMe:

How does the research work? 
The kind of research 23andMe does requires both genetic and non-genetic information from participants. The genetic information comes from analysis of the DNA extracted from a saliva sample. The non-genetic information - which includes physical traits, health history, behaviors and environmental exposures - is collected through easy online surveys.
By collecting and analyzing vast amounts of data, we hope to make breakthrough discoveries that will fundamentally improve how we diagnose, treat and prevent sarcoma.
How long will the research take?
It's important to remember that research can be a long process, but by taking charge and participating you can help drive research forward. Every person with sarcoma who lends his or her data gives scientists the opportunity to better understand this disease - and a shot at significantly improving its outcome.
What results will I get back?
By participating in the Sarcoma Research Community you get free access to the 23andMe Personal Genome Service™. While very little is known about the genetics of sarcoma, you can see how your genes may influence your risk for over 140 other diseases and conditions.
How is my personal information protected?
23andMe respects your privacy. 23andMe will not release your individual information to any outside company without your explicit consent. To prevent unauthorized access or disclosure of your data, 23andMe uses a range of physical, technical, and administrative procedures to safeguard the information we collect.
Will it affect my health insurance?
The Genetic Information Nondiscrimination Act (GINA) was signed into law in 2008. While this law is new, it was enacted to protect individuals against discrimination based on their genetics by health insurance companies or employers. Various states also have enacted protections against genetic discrimination for health insurance. Life insurance or disability providers are not covered under GINA.
What if I need help understanding my information?
23andMe can help provide access to board-certified genetic counselors trained to provide assistance with our service, but who are not 23andMe employees.

Just wanted to pass this information along to my readers as I'd like to see other sarcoma patients/survivors get involved.  You can sign up for this by going to https://www.23andme.com/sarcoma/ and clicking on the Get Involved button.  I think there's a lot of potential here.
Thanks!

Friday, November 12, 2010

Quarterly scans (from yesterday) "all clear"

Just a chest CT-scan this time, and it was clear.  Yeah!  In 3 months (Feb 15), I go back for a Chest-Abdomen-Pelvis CT-Scan (you know, the one where I have to drink that flavored oral contrast).  Mmm-mmm -- I do love my "mochachino" in the morning!

The really good news is that I'll be hitting my 2-year NED anniversary in March, and starting then, my scan schedule will change to every 4 months.

I hope that everyone has a great Thanksgiving and Christmas break.  I'll talk to you in another 3 months!

Thursday, August 12, 2010

Scans All Clear . . . Again!

Just a quick update to let you know that I had my quarterly scans today (Chest-Abdomen-Pelvis CT-Scan only) and, once again, I've been given the "all clear" by Dr. Monson!  So I'm good for the next 3 months.  Yeah!

The only odd thing is that I've noticed I'm developing a certain sense of complacency about what I've gone through and where I'm at.  It's like I told a friend of my recently: when you're diagnosed, you immediately go into denial since "this sort of thing can't happen to me".  Of course, that eventually turns to acceptance (the chemo will surely bring that realization).  But then, after your treatment is complete and life returns to "normal", you eventually start to shift back into denial as to whether or not you actually went through what you went through (and hence the complacency).  I've by no means forgotten where I've come from, but believe me, denial happens both at the time of diagnosis and some number of months after treatment and full recovery.

I'm just thankful that people are reading this blog as it forces me (in a good way) to remember what I've been through, talk about where I'm at, and think about the long-term, which I approach with cautious optimism . . . mixed with a pinch of denial that everything is perfectly fine (and nothing was ever wrong).  It's hard to explain, but I think you get the picture.

Well, time to call it a night here.  Talk to you-all again in another 3 months!

Tuesday, July 20, 2010

International Sarcoma Awareness Week

My apologies for being a little late with this announcement, but July 17 – 25 is International Sarcoma Awareness Week.  Across the country and around the world, this event is being promoted/celebrated by dozens of organizations, each hosting their own unique event, all for the purpose of raising the level of sarcoma awareness.  There may even be an event in your area (see http://www.team-sarcoma.net/2010-teams for all of the details).  And if you’re unable to attend such an event, there’s a "Sarcoma Knows No Borders" Facebook Event going on now that’s open to participation in many different ways.  Spreading the word about this forgotten cancer is what it’s all about.

Locally (here in the Atlanta area), the Southeastern Sarcoma Foundation is sponsoring a Walk for Sarcoma Awareness event this coming Saturday at the Meadow in Piedmont park.  Last year’s event was awesome and I expect to have a great time again this year.  Anyone is welcome to attend.

Oh, and one last thing: I forgot about my anniversary!  But after 22 years of marriage, Holly is neither upset nor surprised.  Why not?  Well, the “anniversary” of which I speak was my date-of-diagnosis anniversary (July 15, 2008), not my wedding anniversary.  I suppose that makes me a 2-year survivor of Liposarcoma (that’s apparently the way most doctors count it).  My apologies if I don’t sound too excited about that, it’s just that:
  1. My date-of-diagnosis was not a very “fun” day in my life (memorable yes, fun no)
  2. I personally prefer to measure survivorship from the date I was NED (No Evidence of Disease), which is March 18, 2009.  For me, that’s my big anniversary.  J
I challenge all of my readers (both of you!) to find a way to participate in International Sarcoma Awareness Week.  If you’re a Facebook user, please see the event mentioned above and decide on a way that you can participate.

Thanks!

Wednesday, June 30, 2010

It's Benign!

Just a quick update to let you know that, as of this morning, the biopsy results are in and the tumor removed last week has been confirmed to be a benign Lipoma.  Apparently Dr. Monson removed a small amount of fat and a lymph node sample as well from that area, both of which also came back clean.  Yeah!

On a recovery note, I went back to work on Monday (a little earlier than originally planned) and have been doing fairly well.  However, over the last day or so, I've definitely noticed much more pain and swelling in that area.  I'll try keeping an ice pack on it today as Holly swears that will help more than anything.

And man do I ever need a full shower!

Friday, June 25, 2010

Colonel Mustard, in the Dining Room, with a Camera*

This is a picture** of my right arm & shoulder area from yesterday, prior to quite a bit of scrubbing to remove the Betadine.  I was covered with this stuff from my chest all the way up my right arm and getting it off was quite the trick.  Simple soap and water couldn't "cut the mustard" (so to speak).  It took rubbing alcohol and a few dozen cotton balls just to tone down the stain.

The good news though is that I'm doing just fine.  I've had no problems with bleeding and the pain has been manageable.  What pain I do feel can best be described as dull, achy, and sore; it kind of feels like someone punched me in the armpit repeatedly (not that this has ever happened before or anything, but I can only imagine it must be similar).

My mobility with my right arm is somewhat limited, though mostly by choice at this time.  I'm purposely not trying to do too much with it as I don't want to risk disturbing the incision area.  But after the bandage comes off (Saturday afternoon), I'll likely start doing more.  Even so, I need to keep that area clean and dry, which means avoiding outside work (especially in our Hotlanta 90+ degree weather) and not washing that area for the next couple of weeks.  I'm sure the guys in the office are gonna just love that when I return next week!

Overall, I've got no complaints and I'm quite relieved that this all went so smoothly.  And I promise to post updates in conjunction with my pathology results and my follow-up appointment in 2 weeks (Mom!), though I don't expect either to be eventful.

Have a great weekend!

------------------------------------------------
* For those who don't have a clue about this title, it was supposed to be a reference to the Clue Game, where Colonel Mustard is one of the characters in this murder mystery.  And given my mustard colored arm and the fact that I'm in my dining room . . . well I think you see what I was shooting for.  And yes, I know: if I have to explain it, then it must not be very funny.  :)

** Some email clients block pictures, so if no picture is present, you can click on the Bold Blue Title in the email and that will take you directly to this post at my blog site, where all will be revealed.

------------------------------------------------

Part II: iPhone 4 Mini-Review



I know you're probably thinking that this is way out in left field, but actually several people emailed me asking how I was liking my new iPhone 4 and wondered what was so great about it.

Here are all of the things I love about this phone:
  • Retina Display -- I've never seen a phone display so crisp, clean, readable, and bright as this one!  It has a pixel density of 326 pixels per inch and currently has the highest resolution of any phone on the market (960 x 640).
  • Faster Processor -- For those with older iPhones (I had a first-generation phone), you'll be impressed with the performance improvements in this phone (thanks to the A4 chip).  Everything is noticeably much snappier.
  • Better Battery Life -- Apple claims up to 40% more talk time with this new battery.
  • Voice Control -- This feature will keep me a lot safer on the road.  Instead of fumbling through my phone book, I can simply hold down the Home button and tell it who to call!
  • iPod -- Of course, you can't overlook the fact that the iPhone 4 any iPhone for that matter) also includes a full-featured iPod (for listening to music and watching videos.  This has always worked seamlessly with the phone part: the music fades, pauses, and the phone rings.  Once you're done with your call, the music resumes.
  • HD Video Recording -- No need to carry around your Flip video when you've got this baby.  For a phone, it shoots really amazing video!
  • FaceTime -- Yes, there's actually a front-facing camera designed primarily for video conferencing (presumably with others that have an iPhone 4), but which can also be used for self-portraits.  Don't know that I'll be making a lot of use of this feature (as I am a bit camera shy), but I can see this coming in handy.  What's also cool is that you can switch between the front- and rear-facing camera during your FaceTime call.  Currently the FaceTime feature requires a WiFi connection (as AT&T is trying to keep data traffic down on their 3G network).
  • Camera Improvements -- The new camera is now 5-megapixels and includes digital zoom and a built-in LED flash!  This isn't gonna replace my nice camera for trips or anything, but it's comforting (for me) to know that I have a decent camera with me at all times should I ever need it.
  • eMail Improvements -- Now if you're not the type who checks their email frequently, you likely have no business getting a Smartphone at all.  Connectivity is really the backbone of all Smartphones, and the iPhone 4 is no exception.  New with iOS 4 (the operating system released with this phone) is a feature called All Inboxes, which consolidates the Inboxes of your various email accounts into one location.  No longer do I have to go digging through my 3 email accounts individually; I've got everything in one nice location, and all available from my phone.
  • Rich Texting -- Text messages are no longer restricted to just words; you can now include photos or even video in your text messages.
  • Applications -- Like all Smartphones, you can download and run a ton of different applications on your iPhone.  Most applications are either free or really inexpensive and Apple claims the world's largest app platform, with over 200,000 apps in practically every category.  One category of applications is gaming, and the iPhone is becoming a bigger and bigger gaming platform with every new release.
  • Multitasking -- Up until iOS 4, you could pretty much run only one application at a time on your phone (though you could always do some pseudo-multitasking with the phone and music).  And I was pretty much OK with all of that and didn't need more.  But nowadays, with such a huge variety of downloadable applications and games, being able to truly multi-task is almost a necessity (at least for many).  Multitasking allows you to switch between multiple applications and pick up right where you left off.  One good example of this is making (or receiving) Skype VoIP calls while other apps (or games or movies or whatever) are running.  Just think about how you multi-task on your computer at home (whether you know it or not) and apply this reasoning to your iPhone.  You get the picture.
  • New Data Plans -- With the release of the iPhone 4, AT&T has announced that new customers must subscribe to a limited monthly data plan (either 200MB @ $15 or 2GB @ $25).  Existing customers have the option to keep their unlimited data plan (which is $30 each month), but should likely first check their data usage to see if they can't live with something less (simply call *DATA# and data useage information will be sent to your phone for free).  And of course this does not include messaging, which is an additional $5 for 200 messages.  AT&T is doing this because their 3G network is already overloaded and they need to encourage people to keep their bandwidth in check.  For me, I've singed up for the 200MB @ $15 plan and the 200 messages for $5 deal.  That combined with the fact that I use WiFi whenever possible (instead of the 3G data service), I am always under 200MB each month.  Plus, I can switch to the 2GB plan if my needs should change.  For some iPhone 3G users, this new data plan might actually result in a price break!
Bottom Line: if you're the type of person who can justify a Smartphone and don't mind paying an additional $20 a month (or more) for the data + messaging service, this is the phone for you!  Pay no attention to those new Android phones (not this year at least) and Crackberry's still got nothin' on iPhone!

Wednesday, June 23, 2010

A little off the top, please

All indications are that the surgery was a complete success!  So far, my pain is quite manageable, though I suspect it will likely go up a few notches by tomorrow.  My marching orders (post-op) are:
  1. Take the dressing off after 3 days.
  2. Follow-up with the doctor on Friday, July 9.
  3. Do not drive or operate heavy equipment in the next 24 hours.
  4. No alcohol for the next 24 hours.
I’m good with most all of these instructions, though I did make it clear “no promises” regarding the 24-hour moratorium on alcohol.  J  The Lipoma itself was approximately 4cm x 6cm and I'm told that the pathology results should be available within 7 - 10 days (though nobody is really expecting this to be anything other than Lipoma, which is benign).

Prior to the surgery, I got a little bit nervous when Dr. Monson mentioned, “Yeah, that thing’s in there really deep.  Removing that huge Liposarcoma on your leg was easy given where it was at; this will be a bit more complicated.”  Moments later, the Anesthesiologist followed up with the comment, “Wow – that really is an unusual location.  Surgery there can really be painful.”  All I can say is I’m just glad that I’m the kind of guy that really likes to hear people tell it to me straight!  Otherwise, a “panic attack” might have been in order.

Seriously though, this medical team is incredible!  I’ve got one of the best orthopedic surgeons in the southeast operating on me, awesome nurses, and an Anesthesiologist (named Heather) who really listened to my history of getting sick after surgery.  She described this as PONV (Postoperative Nausea and Vomiting) and told me she had it covered.  And sure enough, for the first time I didn’t get sick following surgery!  Yeah!

I’ve rented 2 movies and plan to start watching them as soon as I get something to eat.  Plus I plan on playing with my new iPhone 4, which was delivered today (perfect timing I might add).  I'm such a technogeek!

Thanks to all for your support, comments, emails, etc.  You-all are awesome!

A Cut Above

Yes, the time has finally come to get a new scar “tattooed” to my body.  At high-noon today, I will go in for that lipoma surgery that I mentioned in previous posts.  And this isn’t just any run-of-the-mill, dime-sized lipoma either (I have several of those); this one is much bigger and buried deep within my right armpit.  The main reason it’s coming out is because the location makes it difficult to monitor and we don’t want it to grow unchecked and become a problem.

I’m not really expecting this to be a big deal or anything, but I do think this is gonna hurt!  I just remember the pain that Holly was in after she had her right axillary node dissection (15 months ago) and I think this operation will be very similar.  I’m just glad I’m in the capable hands of Dr. Monson, who did such spectacular work on my leg 15 months ago.  Don’t know if I’m going to need any drains yet for this procedure (I’m hoping I won’t).  The surgery itself will be taking place at the Emory Spine Center (Executive Park) on an outpatient basis.

Once this is behind me, the exciting thing is that Holly and I will now have matching scars under our right armpits!  Now how cool is that?!?  I know that some couples like to get tattoos and all, but we (apparently) do things a little more “out of the ordinary”.  And trust me, the experience we’ve been through is just as permanently etched into our bodies, hearts, and minds as any real tattoo.  I’d say we’re a match made in Heaven!

Well, here’s to careful cutting, a speedy recovering, and a scar that’s just slightly bigger than Holly’s (for bragging rights, of course)!   J




Recent CT-Scan.  The area circled in red is the Lipoma that will be removed today.

Tuesday, May 18, 2010

Gwinnett Relay for Life – What’s it all about?

Though the actual 2010 Gwinnett Relay for Life wrapped up a week and a half ago, a lot of people still have questions as to what Relay is and what makes Gwinnett Relay the #1 relay event in the world.  If you’ve never been, it’s actually difficult to describe what all goes on, but I found something that might help.  Please check out this 4-minute video that summarizes the happenings of that evening:


Enjoy!

Thursday, May 13, 2010

Quarterly scans “all clear”

Just a quick update to let you know that I had scans this morning (MRI on my left thigh and a Chest CT-Scan) and both were clear.  Yeah!  It’s always such a relief to get that kind of good news, even though I typically don’t worry about it (except sometimes the night before a scan).  My next scans (CAP) have already been scheduled for August 12th.

Still to be arranged is a date for removing the rather large lipoma under my right armpit. Dr. Monson will be doing that surgery likely sometime mid to late June timeframe. I just need to sit down and look at my calendar, Holly’s calendar, the kid’s summer schedule, and then make that fit with Dr. Monson’s surgical schedule.  I’m told that the surgery will be done on an outpatient basis and that I will be out of commission for about a week recovering at home.  Holly’s axillary node dissection surgery was similar to this both in terms of complexity and location, and I know it took her a while to bounce back from that.  Dr. Monson also said that a full pathology would be ordered on what they remove (to rule out cancer).

The other thing I wanted to mention is our Gwinnett Relay for Life results this year.  Thanks to contributions from many generous friends and family members, Holly and I together raised around $3,500.  That is really awesome and it’s all for such a good cause too.  I would encourage each of you to participate in the Relay for Life event in your area.  It’s really quite an uplifting experience.

More updates in another month or so . . . once this lipoma-gone-wrong gets the hatchet treatment!







Kyle, Bryce, Holly, and Dave about to share their story at Gwinnett Relay for Life last Friday (click to enlarge).  


You might notice that I'm wearing last year's shirt.  I like purple better.  :)

Monday, April 12, 2010

Gwinnett Relay for Life 2010

“Relay for Life” – what’s that? Isn’t that some sort of 10K race for charity? Oh, it’s for cancer victims? Well, I suppose that’s a good cause, though I don’t personally care all that much since I’m in perfect health and my family has no history of cancer. I don’t even know of anybody who’s fighting cancer. So, if you don’t mind, I’ve got lots of other things to take care of . . . .
Yeah, I’d say that would have pretty much summed up my attitude about cancer 2 years ago. To me, cancer was something that other people got, mostly due to family history of cancer, poor diet, a stressful job, or living too close to power lines. Given that I was clean on all of these counts, I figured “no way” was that in my future. Quite honestly, I had never even heard of Relay for Life back then.

Looking back, it was likely that same arrogance that led me to believe for almost a year that the bulge on my outer left thigh was simply a “big muscle”. Then came the shocking diagnosis: Myxoid Liposarcoma. A further review of my biopsy slides indicated the presence of the Round Cell component, which made my case “high-grade”. Because of the size of my tumor and the “high-grade” characteristic of the cells, my cancer was classified as Stage III. According to some sources, only about 1 in 400,000 people annually are diagnosed with my condition, yet somehow I drew the unlucky short straw here. It just goes to show that anyone (regardless of living conditions or pedigree) can become a cancer patient.

So, why do I Relay? Here are my main reasons:
  1. I relay to honor and support my fellow brothers/sisters with cancer.
  2. I relay in memory of those who have been taken by cancer.
  3. I relay to raise cancer awareness as truly “sarcoma knows no borders”.
  4. I relay to help find a cure.
Please support my efforts by making a donation to my Relay for Life team (or http://main.acsevents.org/goto/dave.novak in case your email client is hiding these links). Your donations go to the American Cancer Society (ACS) are tax-deductable. Click here to see how the ACS uses your donations. 

Incidentally, the Gwinnett Relay for Life Event (which is the largest such Relay event in the world), will be on Friday, May 7, or just a few short weeks away.  So, if you can, please make a donation by that time.  (And if you've already made a contribution to Holly, I thank you as this "counts" towards our team goal.)

Thank you for your consideration and support!





Holly and Dave at Gwinnett Relay for Life 2009 (click to enlarge)

Thursday, March 18, 2010

For those getting e-mail notifications only . . .

If you receive email notifications about changes to my blog, my previous Happy 1 Year Anniversary post likely did not include the embedded music video links found on the actual blog site. If you're interested in checking these out, just go to my blog home here: http://dnovak-liposarcoma.blogspot.com/.


Alternatively, when you receive an email indicating that a post has been made, you can click on the Bold Blue Title in the email and that will take you directly to the post at my blog site.

Enjoy!

Happy 1 Year Anniversary!!!

Today (March 18, 2010) marks the 1 year anniversary of me being NED (No Evidence of Disease). It was a year ago exactly that I had surgery on my left thigh, removing what remained of my tumor (having already gone through both chemo and radiation.) So I am now 1 year NED! Yeah!

To help celebrate this first milestone, I’m doing a little happy NED dance here at home (with the curtains closed) while listening to some of my favorite “feel good” songs. These songs were really encouraging for both me and Holly as we both battled cancer during 2008 and 2009.

So, with great fanfare, I offer to you my top 3 most encouraging songs:

Nickelback: If Today Was Your Last Day

Another great Nickelback song that really gets you thinking.



My favorite lyrics from this song include:
My best friend gave me the best advice
He said each day's a gift and not a given right
Leave no stone unturned, leave your fears behind
And try to take the path less traveled by
That first step you take is the longest stride

If today was your last day
and tomorrow was too late
Could you say goodbye to yesterday?
Would you live each moment like your last?
Leave old pictures in the past?
Donate every dime you have?
If today was your last day

Against the grain should be a way of life
What's worth the prize is always worth the fight
Every second counts 'cause there's no second try
So live like you'll never live it twice
Don't take the free ride in your own life

If today was your last day
and tomorrow was too late
Could you say goodbye to yesterday?
Would you live each moment like your last?
Leave old pictures in the past?
Donate every dime you have?
Would you call old friends you never see?
Reminisce old memories?
Would you forgive your enemies?


So do whatever it takes
'Cause you can't rewind a moment in this life
Let nothin' stand in your way
Cause the hands of time are never on your side

New Radicals: You Get What You Give

Though I can’t say that I like (or even understand) everything about this song, it is definitely a very popular, fun, and uplifting song. The guy who sings it has a great haircut too. :)



My favorite lyrics from this song include:

But when the night is falling
You cannot find the light, light
You feel your dreams are dying
Hold tight

You've got the music in you
Don't let go
You've got the music in you
One dance left
This world is gonna pull through
Don't give up
You've got a reason to live
Can't forget
We only get what we give


But when the night is falling
You cannot find a friend, friend
You feel your tree is breaking
Just bend

You've got the music in you
Don't let go
You've got the music in you
One dance left
This world is gonna pull through
Don't give up
You've got a reason to live
Can't forget
We only get what we give

This whole damn world can fall apart
You'll be ok, follow your heart
You're in harm’s way, I'm right behind
Now say you're mine

You've got the music in you
Don't let go
You've got the music in you
One dance left
This world is gonna pull through
Don't give up
You've got a reason to live
Can't forget
We only get what we give
Don't let go
I feel the music in you

Fly high
What’s real can’t die
You only get what you give
You’re gonna get what you give [not in video version]
Just don’t be afraid to leave [not in video version]
Kris Allen: Live Like We’re Dying

This song actually came out after my treatment was complete, but it’s still a great song with powerful lyrics.



My favorite lyrics from this song include:

Sometimes we fall down, can't get back up
We're hiding behind skin that's too tough
How come we don't say I love you enough?
Till it's too late, it's not too late

Our hearts are hungry for a food that won't come
And we could make a feast from these crumbs
And we're all staring down the barrel of a gun
So if your life flashed before you,
What would you wish you would've done?

Yeah, we gotta start
Looking at the hands of the time we've been given
If this is all we got and then we gotta start thinkin’
If every second counts on a clock that's tickin’
Gotta live like we're dying

We only got 86,400 seconds in a day to
Turn it all around or to throw it all away
We gotta tell them that we love them
While we got the chance to say
Gotta live like we're dying

And if your plane fell out of the skies
Who would you call with your last goodbye?
Should be so careful who we left out of our lives
For when we long for absolution,
There'll be one on the line

Yeah, we gotta start
Looking at the hands of the time we've been given here
If this is all we got and then we gotta start thinkin’
If every second counts on a clock that's tickin’
Gotta live like we're dying

We only got 86,400 seconds in a day to
Turn it all around or to throw it all away
We gotta tell them that we love them
While we got the chance to say
Gotta live like we're dying



You never know a good thing till it's gone
You never see a crash till it's head on
Why do we think we're right when we're dead wrong?
You never know a good thing till it's gone

Monday, February 22, 2010

Right axillary lipoma to be removed

As a follow-up to my previous post, I wanted to let you-all know that I do indeed plan to have the large lipoma (located under my right armpit) removed sometime this summer. I had another conversation with Dr. Monson (my orthopedic oncologist) about this and he was able to clarify why this particular lipoma is “special”. (Please note that I have several other smaller, more typical-sized lipomas in other easily-accessible locations, but the doctor has no interest or intention of removing those.) I also got a second opinion from another oncologist, who said essentially the same thing as Dr. Monson.

The reasons to remove this particular lipoma include:
  1. It’s difficult to monitor – given its awkward location, it’s difficult to monitor this lipoma for changes. Physical examination of the area is not a reliable means of detecting change and CT-Scans are primarily focused on abnormalities of the chest, abdomen, and pelvis and, therefore, not always fully inclusive of this area.
  2. It could become cancerous – though this lipoma is not believed to be cancerous, there’s a chance that it could become cancerous (in particular for someone already diagnosed with Liposarcoma). Having said that, however, I should also point out that I was told (by the doctor) that this would be “unlikely”. Even so, this motivates me all the more to have it removed.
  3. Don't wait for it to become a problem – given that there are critical nerves, blood vessels, and lymph nodes in that area, it’s probably best to have this removed before it has a chance to grow and become all that more of a surgical challenge.
I should mention as well that both doctors said “no rush” on the surgery, which is why I’m waiting until the summer to have this done. All-in-all, I’m not too worried about it, though I’m well-aware that this surgery comes with its own set of risks (especially given all of the nerves in that area). Even so, I think that a good surgeon shouldn’t have any problems with it.

Bottom line – having it removed is the right thing to do.

Saturday, February 13, 2010

Quarterly scans all clear, but . . .


Thursday morning I had both an MRI of my leg and the full set of Chest, Abdomen, and Pelvis (CAP) CT-Scans. These scans, of course, were preceded by a Wednesday evening “nightcap” of “Creamy Vanilla Smoothie” (a.k.a., Barium Sulfate Suspension), with the same for breakfast Thursday morning. I have to admit, the Vanilla was the best of all the flavors I have tried. That’s not to say that I liked it either, but rather that it was the most tolerable of the ones I’ve had thus far. Next time though, I think I’ll press my luck and go for the (even newer) Mocha flavor! Mmm . . . Mocha . . . I just hope I can stand the anticipation between now and then! [No, not really; I can wait. :)]


Now for the good news: my quarterly scans where all clear! Yeah!!! This leaves me sitting easy for the next 3 months. Honestly, I never really worry too much about what may or may not be going on in-between scans. Yes, I typically do get a little nervous the evening before my scans, but the truth is there’s really nothing I can do that will make my results either better or worse than what they are going to be. And that’s not fatalism or defeatism by any stretch; that, my friends, is acceptance.

So what’s the but about in the title? Well, way back in July, 2008 (when I was getting my first full set of scans), it was noted that I have a rather sizable lipoma under my right armpit (see dark area within the red outline in the scan picture on left). Though my latest radiology report describes this as “a right axillary lipoma, stable from the prior exam”, Dr. Monson (my orthopedic oncologist) recommended that I get it removed.  (Note that I also have several other smaller, more typical-sized lipomas in various locations, but the doctor has no interest or intention of removing those.)  Though his advice was couched with “no rush”, the concern is that a large lipoma could change into something cancerous. I suppose he’s probably right (he certainly has an amazing reputation and impeccable credentials). Even so, I’ll want to get another opinion as well as find out more details about the surgery itself, particularly the risks and recovery time. I think my main hesitation here is I'm not looking forward to any surgery, especially if it will take days to weeks to fully recover.  Furthermore, it's not currently bothering me or giving me any type of discomfort.  If anybody has any information or advice for me here, I’m all ears.

And there’s one more but worth mentioning here: all my scans this time were done without IV contrast. Why? Well, recent blood tests showed slightly elevated creatinine levels (mine is 1.5) and there was some concern that the powerful intravenous contrast agents (those used with the CT-scans especially) might send my kidneys “over the edge”. What’s surprising to me is that I’ve always been good about drinking plenty of water and I’ve made a point of drinking 2 – 3 bottles of water immediately after each CT-Scan in an effort to quickly flush these from my system (as suggested by the radiologist).  Even so, it's possible that the sum of all these dyes to-date has led to my elevated creatinine levels. But it's even more likely (as one comment below suggests) that in my case what I'm seeing here is a late effect of my chemotherapy drugs. Either way, I will need to avoid contrast agents going forward.

To be clear, I’m not blaming anyone for this. Dr. Monson never ordered any contrast with my scans and has long since preached against this practice, arguing that the risk outweighs any perceived benefit. Furthermore, in my case, I am told that about 80% of any Myxoid Liposarcoma recurrence would show up as “chest nodules”, which is something you don’t need contrast to see.

So why was IV contrast used in the first place? Well, it’s the radiologists who seem to prefer it. But even there, they were fine with skipping it knowing that my creatinine levels were elevated. In fact, they were very appreciative that I had my levels tested and that I brought this to their attention.

So why even mention this? The point here is that one needs to be aware that cancer treatment and/or prevention can lead to yet a new set of problems. Also, if you’re having MRIs and/or CT-Scans with IV contrast, be sure to drink plenty of water immediately after the exam to help flush these dyes from your system. Finally, make sure that your doctor monitors your creatinine levels (especially if you've had chemotherapy drugs) so that any issues are caught early . . . before they have a chance to become big problems.

OK – I’m done. I’ve rambled on long enough. Expect to hear from me in another 3 months.

Saturday, November 28, 2009

Chemo Survival Guide (a.k.a., Therapy for Chemotherapy)

(originally written November 28, 2009; last updated December 21, 2012)

Introduction
If you’ve read my story, you’ll know that I had to undergo 6 rounds of intensive chemotherapy. Though that was quite the ordeal at the time, it now (not even a year later) seems like a distant memory. Today my health is fine, my life is great, and in many ways I’ve “moved on”. But yet I realize that for others, their journey is only beginning. Furthermore, in retrospect, I only wish I knew then (heading into Round #1) what I know now. Therefore, before I forget everything I’ve learned along the way, I figured it would be time well-spent to document my personal Chemo Survival Guide.

Disclaimer Section
The legal department asks that I make clear that I am not a doctor and that I am not offering medical advice. What I share below is what worked for me during my cancer treatment; your mileage may vary. Please do not rely on anything that is said (here or anywhere) without first consulting your doctor.

Also, having talked to quite a number of cancer patients and having exchanged many "war stories", the quantity and severity of the issues I experienced seem to be worse on average than what others have described.  I want emphasize this right up front as I do not wish to scare anyone or lead them to believe that "this is all going to happen to me too!"  Chances are you will have fewer and/or less severe side effects than what I went through.

My Chemotherapy Treatment
My chemotherapy consisted of 6 three- or four-week cycles administered over a four-month period. Each cycle included 4 – 5 days of inpatient treatment with the tough AIM regimen (Adriamycin [generic name: Doxorubicin] + Ifosfamide + Mesna [a urinary tract protector for use with Ifosfamide]) followed by 2 (and sometimes 3) weeks of at-home recovery. Over the course of these treatments, I learned about:

Battling Nausea
For me, dealing with frequent nausea was one of the most difficult parts of my treatment. The nausea would typically start the Tuesday of my hospitalization (after 1 day of chemo), would peak that Saturday (a day or two after my last chemo infusion), and would persist well into the next week. But by week three, I was generally feeling much better and could eat normally.

It’s really strange what the chemo does to your system. My sense of taste and smell were both greatly exaggerated (as if on steroids). So many foods were surprisingly different than what they were like prior to chemo (and often repulsive). For example, I couldn't let anyone drink coffee around me because it smelled so bad (especially flavored coffee), and I’m a coffee lover! I eventually did go back to coffee, but that was a month after all 6 rounds of chemotherapy. Today (post treatment), everything food-wise has returned to normal (though sadly this means that I gained back all 30 lbs that I lost during treatment).

To combat nausea, I found that it’s important to:
  1. Eat Something – eating on a regular basis and having some food in your stomach is very important to fight off nausea. Find the foods that you like and are agreeable with you. Whatever sounds good is what you should eat. If you can, try to avoid the smelly hospital food whenever possible (or at least be very selective with your ordering). During my hospitalizations, I would often have a Dark Chocolate Ensure (which I kept on ice in my private cooler) for breakfast. For lunch, my wife Holly would bring me a special meal of my choice (typically carry-out from a favorite restaurant). What a lifesaver!
  2. Walk – light exercise is also good for helping to fight nausea. Each day I would try to walk 40-50 laps of the 7th floor (chemo pole in tow) there at Crawford Long (i.e., typically twice a day I would walk 20 – 25 laps). This may also help improve overall energy levels.
  3. Take a nap – Chemo will wear you out, so it’s important that you get plenty of rest. I found that it was pretty much a necessity to nap for an hour or so every afternoon.
  4. Find the drugs that work for you – I’ve always been a minimalist when it comes to taking drugs. The fewer the better! Despite this, I quickly learned that nausea was a major problem for me and that I needed to figure out what drugs were most effective in fighting nausea. For me, these were: 1) Zofran or Kytril, 2) Compazine, 3) Ativan, 4) Emend. I would generally alternate Zofran (or Kytril) with Compazine during the day and take an Ativan before going to bed. Many people (my wife Holly included) also had success with Phenergan tablets (especially at night), though it gave me weird dreams so I couldn’t take it (I used Ativan instead).

    During Round #4, I discovered Emend, which works in conjunction with these other anti-nausea drugs, but did way more for me than anything I ever tried. Emend is designed to be taken both the “day of” your chemo (for those lucky enough to be getting chemo only 1 day at a time) and afterwards for the two days subsequent. But my oncologist was concerned about the Emend impacting the effectiveness of the chemo and possibly even causing a rare complication called neurotoxicity. She was, however, willing to let me start the Emend the day after my chemo. And since I did not have Emend in the hospital, my doctor prescribed 4 pills to cover me for the next 4 days after chemo (please note that Emend is packaged as a 2-pack by the manufacturer). It’s also important to note that you cannot already be experiencing nausea when taking Emend or it supposedly won’t work. So, to meet that requirement, I ended up taking a Zofran around 5:00am - 6:00am (while in bed) and then took the Emend at around 7:00am - 8:00am when I got up. It worked!
Painful Neulasta shot
Most chemotherapy patients are required to get a Neulasta shot the day after chemotherapy (used to reduce the risk of infection by stimulating the production of white blood cells). Though the shot itself is relatively painless, a common side effect of Neulasta is bone pain and/or muscle aches. Though I was fortunate enough not to have experienced any such such side effects, my wife Holly and many others that I know had considerable bone pain.  For some, in fact, this can be the worst part of chemotherapy treatment.

One other thing that’s important to note here is that this Neulasta shot is very expensive (in the neighborhood of about $4,000). Even though I had great health insurance, my pharmacy co-pay for this was about $775. It turns out, however, that my co-pay would have been $0.00 (zero) had I simply gotten this shot in the infusion center rather than picking it up from the pharmacy. Why? Because I had long since met my out-of-pocket maximum for medical but I had not even come close to my max for pharmacy. Yup, these insurance guys have all the bases covered. With that painful lesson learned, I can assure you that I went to the infusion center for rounds 2 – 6. Please keep this lesson in mind as it is likely that your insurance works similarly.

Other side effects of chemotherapy treatment
Though nausea was probably the worst part, there are several other things in the “honorable mention” category, including:
  1. Constipation – sorry, but I have to mention this one. Between the chemo, the anti-nausea drugs, and the iron pills my doctor had me take, it was difficult to stay "regular". Now normally I would take a fiber supplement to help (such as Metamucil), but my nausea was so severe that I simply could not stomach it. About the only thing that worked for me was the “red pills” (i.e., Peri-Colace or generic equivalent). I would take several of these each day. Turns out my doctor is a big believer in keeping her patients regular and, if I had not “gone” in the last 2 days, she would ask me to drink the better part of a 10 oz. bottle of Magnesium Citrate. Though somewhat unpleasant, it got the job done. I ended up purchasing several bottles of this over-the-counter remedy for my recovery time at home . . . just in case.
  2. Mouth Sores – I never had too much trouble with this myself, but this is quite common for high-dose chemotherapy patients.  Why does it happen?  Possibly due to a condition known as Mucositis, which refers to the thinning of mucous membranes (as an adverse effect of chemotherapy) that can lead to inflammation and ulceration.  For those that I've talked to who experienced mouth sores, it typically peaks around day 10 of the cycle but then goes away once your blood counts return to normal.  If you experience this, please talk to your doctor as they may suggest a special mouthwash or other treatment to ease symptoms.
  3. Pain in the butt (literally) – Yes, I know, this just keeps getting worse by the minute! But for the sake of "full disclosure", I think this one is too important to not to mention. I started feeling this pain sometime after my 4th cycle (during my worst neutropenic fever episode). As my counts continued to drop, my (is there a nice way to say this?) anus really hurt. The pain would last 5 - 7 days and was most pronounced when my counts were at their lowest (around day 10). I found that a sitz bath provided some relief for this discomfort.  Once my counts returned to normal, the pain would mercifully subside. Be sure to let your doctor know what's going on here.  If the pain becomes severe, they may need to prescribe something to help manage the pain.  This pain might also be related to Mucositis (described above).
  4. Anal Fissures – An anal fissure is a (small) tear in the lining of the lower rectum (anus) that causes pain during bowel movements, which can also trigger anal spasms and, hence, more anal pain.  I wasn't aware of this condition during treatment, though (in retrospect) it may have been a contributor to the anal pain I described above.  Apparently fissures are very common among people going through high-dose chemotherapy.  Though fissures typically heal on their own between rounds of chemo, keep you doctor in the loop here as you do not want this to develop into a chronic problem.
  5. Fungus – Once your counts start dropping, your immune system weakens, leaving you are susceptible to bacterial and fungal infections (the latter of which was news to me).  The fungus I had targeted the private areas below my waistline (both front and back side). Symptoms include: painful skin irritation, redness, burning, and general discomfort. I battled this as best I could with over-the-counter anti-fungal creams and had mixed results. Be sure to let your doctor know what's happening here, however, as fungus can quickly become severe and may even require hospitalization.  In my case, the fungus would subside once my counts returned to normal.
  6. Eye Twitch – I had issues with this on and off over the course of my treatment and nothing seemed to help (in fact, the drugs only caused other problems). I quickly learned to accept the twitching and to ignore the problem. This all went away after treatment.
  7. Fingernails – I never lost my nails (though some people do), but mine did get weaker and often tingled and ached. Several of my nails also noticeably loosened up from their nail beds. The other interesting thing was that each round of chemotherapy would put a white line on the base of my fingernails. Before all 6 rounds were over, I had some interesting looking fingernails with tree-ring-style white lines running through them. I regret that I never took a picture of my nails, but here's an example picture to show you what I'm talking about: Chemo Nails  Mine looked similar, just not as bad.
  8. Chemo Brain – I'll be honest and say that I had Chemo Brain (think of it as a mental fog) for much of the duration of my chemotherapy (especially during the first two weeks of each three-week cycle). As a software developer, this was particularly frustrating as it made it virtually impossible to do any problem-solving. What's even worse is that I had no ability (or at least no desire) to read books, watch TV, or even play games on my computer or Xbox. Indeed the fog was thick, but it eventually lifted and I feel clear today.
Be prepared for the week after chemo
I originally assumed that if I made it through the week of chemotherapy in the hospital I was pretty much home free, but that’s simply not the case. For me, my white counts (in particular my neutrophil count) dropped to their lowest at around Day 10 of my cycle . . . and I could usually tell when I hit bottom because the negative side effects where at their peak. Typically, if I was admitted on a Monday (Day 1) and discharged on a Friday (Day 5), my worst day was the following Wednesday (Day 10).  You too will likely bottom out at about the same point in your cycle (give or take a day or two).  Given that an infection is most likely to occur when your neutrophil count is low, you'll want to make sure that you have a friend or family member “on call” throughout that time in the event you need to go to the hospital.

During my 6 rounds of chemo, I was hospitalized 4 times due to Neutropenic Fever, but recovered just fine from each incident. In fact, after Round #4, my Absolute Neutrophil Count (ANC) dropped to 18, which is about as bad as you can get without going all the way to zero.  I mention this not to scare you but so that you won’t be scared should you ever need to be hospitalized.  According to my oncologist, this happens quite regularly, yet her patients always seemed to bounce back just fine.  Even so, it can be a darn scary experience all the same . . . especially if you're unaware of just how low your counts can go!

Just don't let these "dire warnings" drive you into seclusion either.  From what I've read and been told, most bacterial infections result from your body's inability to fight off normal bacteria present in your gastrointestinal tract or skin rather than from being in a crowded place.  Even so, use common sense about where you venture when you know (or think) your counts are low.

Should complications arise . . .
Make sure you talk with your doctor and find out exactly what the procedure is if you have complications after chemotherapy. My doctor asked me to contact the "on call" doctor if I had a fever of 100.5 (or more). Based upon my current temperature and how long I had the fever, the doctor could advise me to go to the Emergency Room. But that honestly did not always work too well as it often took hours to go from the ER to actual admittance into the hospital. It would have been better if the doctor could have somehow admitted me directly, thus bypassing the ER altogether. Others in my sarcoma support group have similar stories and it is my understanding that the Emory hospital system is trying to improve this situation.

But the point here is that you need to know how this process works with your doctor, your hospital, and your health insurance. And if you do need to go through the ER (which is fairly typical), be sure to find out what your doctor can do to speed up the process. For example, on one of my unscheduled visits, the doctor called ahead to the ER and they got me to the back immediately and I was admitted to the hospital within an hour. Just be sure to tell them when you check in that you’re chemotherapy patient and that you’re running a fever. That alone should signal them to move you out of the waiting room ASAP.

Learn and know your body’s signals
It was important to me to be able to distinguish between a chill that might indicate a fever and one that could signal that my body was kick-starting its immune system. A simple thermometer, a little common sense, and going through a round or two of chemotherapy will aid you in making this important distinction.

For example, I've already stated that I was hospitalized 4 out of 6 rounds for neutropenic fever. The early onset of this includes general fever symptoms, such as extreme fatigue, chills, and high-temperature. But within days of each fever I also experienced some rather odd symptoms that at first I mistook for a recurrence of the fever. I would experience night sweats, often which was accompanied with a type of chills (or tingly wave) coming over my body, but all without any fever whatsoever. The sweating was quite strong and came from my head, chest, and back area while I was sleeping. I quickly learned, however, that this was my body’s way of telling me that it had begun the production of white blood cells. I also learned that I needed to sleep with a towel on my pillow and one on my bed since I would otherwise pretty much soak my pillow and my sheets with sweat!

Some doctors have seemingly validated my theory, stating that “everyone’s body signals them in a different way. For you it is night sweats; for someone else it could be something completely different.  Such sweats are likely the result of your body's engine firing up production of white blood cells.”  And for whatever it’s worth, at least one other person I know experienced something similar when when she was going through chemo.

The lesson: learn and know your body’s signals. For me, it was really encouraging to know that I was on the mend without having to wait for the doctor to tell me!

Attitude is important!
After only one cycle of chemotherapy, I found myself back in the hospital with neutropenic fever. I certainly was not expecting complications (at least not that early in the treatment schedule). The prospect of 5 more rounds of this was frightening.  But then someone left this simple, yet encouraging, comment on my blog: “it’s temporary, it’s temporary!” Indeed, the treatment is temporary, the nausea is temporary, and generally the other side effects are temporary (even the weight loss). It’s so important to realize from the beginning that chemotherapy does not go on forever, even though at the moment it might be overwhelming your life. Take solace in knowing that others too have persevered and remind yourself daily that it’s temporary.**

My wife and her cousin (both breast cancer survivors) used to refer to their chemo infusions as "Spa Treatments".  Their "code" for heading to the infusion center was "I have another Spa Treatment today". It makes me laugh most every time I hear it, and laughter is so darn important, especially during treatment.

A friend of mine (with an identical diagnosis) is currently going through the same chemotherapy that I had. And though nobody (that I know of) actually enjoys their chemotherapy or in any way looks forward to being infused, I have to say that this guy maintains a remarkable attitude. With his permission, please allow me to share a brief excerpt from our correspondence:
Spirits are still good and pretty even and did not need transfusion (though I was pretty dragging walking into the hospital I must admit). Man, being that wiped out gives me much more compassion for what many others, including the elderly, must be feeling much of the time. This said, I'm up for chemo cycle #4 on Monday! Bring it on, take me down, and send them sarcoma invaders to another dimension!
Attitude is also important to monitor because the chemo itself can sometimes trigger depression. One poster (who has worked with hundreds of sarcoma patients) made this comment:
Just so you know, the chemo can also cause changes that send some people into clinical depression, even people who have NEVER dealt with that before. If this happens, it's just a chemical thing and has nothing to do with "weakness" or "not being positive enough." So if Dave's overall mood changes, keep the docs informed. A LOT of the patients I know have gone on anti-depressants at some point in their treatment.
Find Support
Support (especially from family and/or friends) is essential for getting through your chemotherapy. Several sites are listed with this blog and local support groups are often available as well. If possible, try to find someone with a similar diagnosis and treatment plan but is months (or years) ahead of you in terms of treatment and recovery. This type of peer support can be a tremendous asset in that it shows you not only that people survive this, but also gives you some idea as to what to expect (short-term, long-term, etc.).

And speaking of support, I personally have found that music can be very inspiring. Recently, at my 1-Year NED (No Evidence of Disease) Anniversary, I put together a list of my favorite “feel good” songs, including lyrics. Though you may prefer a completely different genre of music, don’t underestimate the importance of music and how it can encourage and lift a person’s spirits.

Questions? Comments? Your suggestions?
I hope this article in some way helps you or a loved one better manage their chemotherapy. Again, this was my experience going through intensive chemotherapy; your experience may be different. If you’ve gone through a similar regimen and have constructive things to add, please post your comments below. Or, if you or someone close to you is about to start treatment and you have questions, please post those below or email me (scroll down to the Contributors section, click on Dave Novak, and you'll find an Email link there).


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** Though the symptoms and side effects described here are generally temporary, it should be understood that some people do, in fact, encounter long-term and/or "late effects" from chemotherapy. See http://sarcomahelp.org/treatment_side_effects.html for details.