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.

Quarterly Scans

Yup -- another 3 months have flown by and it's time again for quarterly scans. So, this morning I had just a simple Chest CT-Scan (and no MRI). That procedure (once they get you in there) takes less than 10 minutes and did not include any contrast. But the best part about having a chest-only scan is that you don't have to chug that "Berry Smoothie" (read barium sulfate) crap the night before and the morning of your scans (which is required when I have full scans). Dr. Monson (who was cordial as always) said the scans "look great" and that they were all very pleased with my progress.

My next scans will be on 02/11/2010 and will include Chest-Abdomen-Pelvis CT-Scan plus an MRI on my left thigh.

Have a great Thanksgiving!

Quarterly scans "look good"

Wow -- what a long day. I had to chug a bottle of that barium “Berry Smoothie” stuff late last night and then another one this morning (in place of my regular coffee and bagel). This was necessary for my quarterly Chest, Abdomen, and Pelvis (CAP) CT Scan. I also had an MRI of my left thigh.

But the good news is that Dr. Monson (my Orthopedic Oncologist) reviewed both sets of films and says they “look good” to him. The official radiology report should be back by end of week, though I trust the result will be the same. Just keep that good news coming and I’ll drink a bottle of the barium “Berry Smoothie” every week if it helped! I just can’t figure out how I managed to ever stomach that stuff when I was going through chemo. I was very fortunate I suppose to keep it down.

Later in the afternoon I drove downtown for routine labs and my quarterly appointment with Dr. D’Amato (my Oncologist). I’m just glad that this isn’t more frequent than quarterly as these scans and appointments took literally all day. But it’s done now and the results were all good.

And speaking of good news, I wanted to mention that my wife Holly finished up her 6th and final round of chemo last Tuesday. In fact, she’s out tonight with several of her "church friends" having a “no more chemo party” (or so she tells me). I’m so happy for her and glad that she never had any serious complications (not to say that it was “easy” for her either). Like I told her when she headed into round #1, she will be amazed at how quickly the 6 rounds will go. Sure, it may seem to drag on while you’re in the middle, but you’ll be surprised at how quickly the last round comes and what a minor blip on the radar it feels like in retrospect. My chemo days seem very small to me now (almost a repressed memory), but that’s fine by me since I’d rather remember all of the good times instead!

Walk for Sarcoma Awareness Tonight!

Well, the family heads out tonight at around 5:30 to Piedmont Park for the annual Walk for Sarcoma Awareness event at 7:00 (http://www.team-sarcoma.net/tag/georgia). It should be fun. Being the local "poster boy" for Sarcoma, I certainly don't want to miss it. This will be a nice way of wrapping up International Sarcoma Awareness Week (http://team-sarcoma.net/).

In case you wanted to understand more about why such events are held, please see this helpful video.

One Year . . . and Counting!

It was just a year ago today that I got the call from Dr. Monson's office to tell me that the biopsy results had come back and that I had been officially diagnosed with Liposarcoma. It took a few more days, however, before I actually met with the doctor and learned exactly what my treatment plan would entail. (See http://dnovak-liposarcoma.blogspot.com/2008_07_01_archive.html for all of the details.) I would have never imagined that such a thing could happen to me. Little did I know that the (benign) brain tumor I had 8 years prior was not my “big event” but rather just a warm up for the main act that was to follow. Unbelievable!

Certainly a lot has happened during this past year and I'm just happy to be alive, doing well and back to a “normal” lifestyle. Not all Sarcoma patients are as fortunate, so I have nothing to complain about!

Moments in Sarcoma

How's this for a shameless, self-promoting plug: http://www.team-sarcoma.net/category/moments-in-sarcoma

Yup -- this is my week to be published (and 4 others). It is interesting to to hear from people all around the world sharing their "Moment in Sarcoma". It brings home the clear message that Sarcoma Knows No Boarders.

My port is out!

As expected, the operation was a success, though I required more sedation this time than when the port was installed about a year ago. Both procedures used "conscious sedation", where Doctors apply a local anesthetic (Lidocaine cream) to the surgical site to numb it and then give you some other drugs to make you relax and feel good, yet you're awake and moderately alert during the procedure. I still remember very clearly "Dr. Best" (the doc who installed my port) asking me tons of computer questions during the operation, so yes it's definitely "conscious sedation".

This time, however, the Lidocaine cream didn't seem to do its job (not on long enough?) as I could feel the incision as it was being made. No problem -- nurse, more IV drugs! Problem solved. By the time I got home this afternoon I felt like I had about 6 margaritas too many and crashed in my bed for 4 hours straight. Now that I'm up, the "hangover" has started. Yup, they definitely gave me more stuff this time!

But I give the team at Emory credit for getting everything prepped and ready so quickly. I checked in around 9:00am and I left there just before 11:30. That's incredibly fast turn-around given that the bulk of this time was spent drawing blood work and waiting for labs results prior to the operation. I'm quite impressed.

My freshly re-opened scar (i.e., they reused the incision from my port placement operation) will need to stay covered for the next 10 days.

As some have already noted on Facebook, "the meaning of this is HUGE!" Indeed, as it means "no more chemo" for starters and cleary shows that my doctors feel that I'm on the road to a full recovery. Yeah!

Port removal surgery Thursday morning . . .

Just a quick update to let everyone know that I’m having my port removed tomorrow morning. I’ve had a port in my right chest now for about a year and I’m ready to have it taken out. Hopefully I won’t need another one anytime soon (if at all). This should be a simple outpatient procedure. I’ll let you know later tomorrow how it went.

Also, I wanted to let you know that the CT-Scan I had back in May came back clean. “No significant changes” were noted. My next scans are in mid-August (lucky me).

Finally, I had a brain MRI done just a few weeks back (on June 26). I recently got word that the Radiologist has given me a clean bill of health on that. It turns out that I had a 5cm pituitary tumor (benign), which was removed back in October, 2000. I’ve just never mentioned that here since it’s unrelated to my sarcoma.

Update on scans

Mmmm . . . berry smoothie (flavored barium sulfate). It goes down smooth and easy (aside from the tingling sensation I feel in my throat). Unfortunately, it doesn't "agree" with me. Tomorrow morning I'm switching back to coffee!

Well, I at least have some preliminary results for my CT Stan. Dr. D'Amato looked at the scans and said they "looked good". Of course the official radiology report could say otherwise, but usually D'Amato and Monson are accurate with their readings. There are a couple of "spots" they are keeping an eye on (one on the liver and one on the chest), but these have not changed in over 9 months, so the docs have not been concerned.

Well, this should be one less thing to think about while on vacation next week. I can't wait to do something fun!

CT Scan Tomorrow

Yup, it's that time again. Three months have elapsed since my last CT scan, so I'm due for another one tomorrow (Monday) morning. This one will be a Chest, Abdomen, and Pelvic scan (the same as what I had back in February). Immediately following the scan I go in for a port flush and a visit with Dr. D'Amato. I likely won't get any results, however, until Wednesday.

Though I expect the results to be positive (err, I mean negative . . . I mean no metastasis was found), I'm not sweating it in the meantime. All I know for sure is that I have a vacation coming up over Memorial Day weekend (and the week following) and I'm going to relax (one way or another). It should be a lot of fun and the family is looking forward to it.

Well, I've got to go now and choke down a bottle of barium sulfate suspension (Berry Smoothie flavor). I can't wait to have the second bottle in the morning instead of my usual coffee. :)

Expect another update on Wednesday after I find out the results.

Relay for Life

Holly and I had the privilege of attending Relay for Life this past Friday night up here in Gwinnett County, Georgia. Supposedly Gwinnett has either the largest or second largest “relay” in the country. This event, sponsored by the American Cancer Society, brought in nearly $2 million dollars from the Gwinnett event alone. I wanted to thank all of you who contributed to Holly’s goal of $1000. She was able to exceed her goal.

I think the most striking part of this event was just the sheer number of people participating in the “survivor lap”, which kicked off the event early in the evening. Seeing that many people, all wearing survivor t-shirts, makes it hard to ignore the epidemic nature of cancer. As recently as last year, both Holly and I were in that group of people who believed that cancer was something that other people get, but certainly not us. I honestly doubt we would have given “Relay for Life” any serious consideration as no one in our immediate family has even had cancer. All I can say is what a difference a year can make . . . and what a year it has been. Our attitudes have certainly been changed through the experience.

Please allow me to share some pictures from the event:

Holly and me (click to enlarge)

Note the caption: “My Chemo SUCKED. How was yours? :)” Irreverent? No -- just trying to be lighthearted (please note the smiley face). Most people laughed, some said “yeah, mine sucked too!” But one person actually told me “mine was fine!” Obviously that person just wasn’t getting enough chemo and should try the “intensive” chemo regime given to sarcoma patients! (click to enlarge)

Holly “deer in headlights” look :) (click to enlarge)

Thank you Nathan Horton for thinking of us when making your custom "Relay for Life" T-Shirts! Cool! (click to enlarge)

Though this was an excellent event (and one I plan to attend every year), the event near and dear to my heart is the “Team Sarcoma Initiative” taking place July 18 – 26, 2009. The Atlanta event for this will be the Walk for Sarcoma Awareness that Friday, July 24th, at 7:00pm. Sarcomas are rare, deadly, and don’t get nearly as much publicity or research funding as other “popular” cancers (such as breast cancer), so awareness is a big issue.

How you doing???

I know I haven’t written much about my status lately, but you can pretty much assume with me that no news is good news. I’ll be wrapping up my physical therapy within the next week or so and both strength and range-of-motion have returned to my leg. The only problem to speak of is that fluid keeps building up in my leg at the surgical site. The problem, as explained to me by Dr. Monson, is that the tumor left a cavity, which my body wants to keep filling. About 2 weeks ago he drained 140 CC’s from that area and since then it has filled up again. He said it’s something they might not be able to fix, but they will try staying on top of it by draining it every 2 weeks for the next month or so. But no guarantees that this will resolve the issue. The good news, though, is that the fluid is causing me no discomfort or real problems (from the best I can tell). It just sort of looks like I have a saline implant in my thigh. :)

My Staples are Out!

OK – they actually were taken out back on Tuesday, but I’ve just been too busy (or lazy) to make an update. Steri-Strips have replaced the staples. In any case, it’s adiós “Zipper Leg”! The best part about having the staples out is that I can now sleep on my left side (something that was just too painful to do with staples).

I mentioned to Dr. Monson the issues I continue to have: 1) the buildup of fluid in my leg, 2) loss of flexibility, and 3) numbness around the surgical site. He responded to #1 by putting a huge syringe in my leg to suck out the fluid (yes that hurt . . . a lot). For #2, he has prescribed physical therapy (3x a week for 4 weeks). PT starts next Wednesday. I should be able to get that done and out of the way before heading into the office each day. As to the numbness, well that is “normal” and should go away over time.

It seems hard to believe that I’m already 3 weeks plus 2 days out from surgery. I’m still using a single crutch at this time (now mainly just for balance in case my leg gives out while walking, which it does occasionally). And I still have to do stairs “old man style” (meaning one step at a time). But I’ve been seeing tremendous improvement recently (especially over the past 2 days), so I think I’ll be losing that crutch within a week.

Finally, it’s worth mentioning that Dr. Monson reiterated on Tuesday that “We hit a homerun” regarding the pathology report on my tumor. I’m relieved to see (and report) that this story will most certainly have a happy ending.

Update on Holly
It turns out that Holly is going to need chemotherapy, hormone therapy, and radiation treatment to fight her breast cancer. You can follow the details of her journey here: http://hhnbreastcancer.blogspot.com/

My drains are out!

I'm now 9 days post-op and Dr. Monson's office called me to get my drains removed. They were taken out this morning, and man did that hurt! There's a lot of pain and a burning sensation while they get pulled out, but the whole thing is over in about 15 seconds. I'm just glad to have them out and not taped to my knee any longer.

The PA also took off the other gauze pads covering the incision / staples and said that it would be best to just leave those uncovered. I was also given the "all clear" to take a shower, which is really nice since I've had to take bird baths for the last 9 days.

With my incision now clearly visible, I was able to measure it and it is exactly 12 inches long (not 16 as previously reported). Evenly scattered throughout those 12 inches are 34 staples, which come out in another 11 days (April 7).

"Zipper Leg" -- That's gonna leave a mark! (click to enlarge)

Are you ready for some good news?!?

I know that my family sure could use some . . . and this afternoon that good news finally came. I got a call this afternoon from Dr. Monson’s PA to say that “we got it all!” Yes, the pathology came back today and I indeed have negative margins and the high kill rate everyone was praying for. I was told that the kill rate was determined to be 95%, which I was informed is a very high percentage. Yeah! I couldn’t be happier (at least not without taking a few more Percocet)!

This means that my treatment is essentially over (all but the healing) and that I will now shift from active treatment into close monitoring. Yes, I will need full CT Scans and thigh MRIs every 3 months for the next 2 years, but the chemo, radiation, and surgery should all be over (forever, in fact, if I they find no recurrence). I for one can’t wait to put this all behind me.

As to my recovery from surgery last Wednesday, my pain seems to be fairly well under control, though my drains are still in. Once the drains slow down sufficiently, the doctor will remove them (likely Wednesday or Thursday). My only concern at this time is that my leg has noticeably stiffened over the past few days. As of last Friday, I could bend my leg 90 degrees without any problem; today, I can hardly bend it even half that distance. That and the area up to two inches left of my incision feels almost numb (kind of like I got a Novocain shot in my thigh). I attribute the numbness there to the surgical requirement of removing the thin layer of tissue between the tumor and my skin. (Here’s an old MRI showing how close the tumor was to the surface.) But the PA was not concerned, so I have to assume that this is all within the range of normal and expected consequences (hopefully all temporary) of this sort of surgery. But otherwise, I’m doing fine and getting around well with just one crutch.

Thanks again, everyone, for all of your care and support. I’m so glad to be able to say that this story is going to have a happy ending . . . and I owe so much to you for helping me to stay strong throughout.

I'm back home now and have a new “tricep”

Yeah, the “tricep” comment in the title is another lame attempt at humor on my part (i.e., 4 muscles [quad] – 1 muscle = 3 muscles [tri]). Yeah, still not funny . . . especially if I have to explain it . . . but I’m trying.

As Holly mentioned yesterday, the surgery went well. In fact, Dr. Monson said that the surgery was made easier by the fact that there was no surrounding nerves or major blood vessels. I take this to mean that my recovery time could be even faster than normal, with fewer long-term complications.

But what really shocks me is that after just one night in the hospital, I'm back home and feeling much better than I could have ever expected. Yes, the Percocet does help, but I have fairly good mobility too, being able to walk with crutches and even climb stairs. With any luck, I should be able to shed the crutches within a few weeks.

Funny thing is I have not even seen the incision itself. That’s all carefully wrapped up within several layers of dressings, the topmost of which is an Ace bandage. I suspect that they will change that when I have my drains removed next week. From what I can tell though, my guess is that the incision is about 16 inches long.

The worst part of the entire experience was the nausea I experienced after the surgery. I ended up getting sick a couple of times yesterday and really could not eat anything all day. This was likely the anesthesia, morphine, or both. But I’ve been fine in this regard since last night. I owe a lot to my sister Barbara (the Oncology nurse), who spent the night with me in the hospital and helped me with countless issues, including pushing me with the Physical Therapy. When you're stuck in a bed with nowhere to go, this type of support is priceless.

And speaking of family, everyone in my family has come into town to show their support. My Mom and Dad from Knoxville, my sister Diane from Lexington, and my sister Deborah from Cumming. All have been tremendously helpful. And many thanks to the rest of you for your emails, letters, and words of encouragement and support. Encouragement and hope really is the best medicine!

The Tumor is Out of Here!

Hey there - this is Holly...I can honestly say that today such a huge weight has been lifted from my shoulders. Dave's surgery went off without a hitch...we were at the hospital at 6:30 AM, surgery started right on time at 8:30 and was finished at 10:00 AM. Dr. Monson told us that the surgery went so well he was ready to go and do it again on Dave's other leg! No need, one was enough! Instead of a quadricept (sp?), Dave now has a 3 and 3/4 cept...just a small part of one of the muscle had to be taken, but nothing significant. We'll have to wait a few days for the pathology report, but the doctor said that he felt really good about what he got out so hopefully this will be it and all the bad cancer calls are gone!

Well, Dave can write more when he gets home and is up to it...he may be discharged as early as TOMORROW! The Physical Therapist had Dave standing up about 4 hours after he got in his room and he was doing leg lifts for her and for Dr. Monson...I was absolutely amazed at how well Dave was doing and am so thankful everything went well...Thank you for your prayers and ongoing support!

Hoping for negative margins and high kill ratio

The clock is ticking and I am now only 12 hours from surgery, which is scheduled for 8:30 Wednesday morning. Though I am confident the surgery itself will go well, I just hope that the pathology for what they remove all looks good.

When the surgeon removes the tumor, they remove a little extra tissue surrounding the tumor as well, which they call the "margin". The margin is then tested for any signs of cancer and the hope, of course, is that these tests are all negative. A positive test here would indicate not only that the margin contains cancer, but also that my leg still contains some cancer. Bottom line -- we want to see negative margins here.

The tumor itself will then go though testing where the Pathologist will determine the "kill ratio" of the cancer cells. Obviously the chemo and the radiation killed some or all of the cancer cells, but we just don't know how much at this time. Though I don't know what a good kill ratio is (90%?), the more dead cancer cells they find (or the fewer living cancer cells they find) the better! So, please pray for a high kill ratio.

Should the margins end up being positive or the kill ratio be lower than expected, chances are good that I'll be asked to go though more chemotherapy. I for one would like to avoid that.

I should know more about the pathology either late this week or early next week.

Like a surgeon

Hi Everyone --

Well, I'm just a day and a half away from my surgery now and feeling a little nervous. BUT, I found the following video on YouTube and it helped lighten up the mood:



Crud, it won't let me embed this video. Well, you don't want to miss this one, so just click here, http://www.youtube.com/watch?v=WFkgbK7VTmY, and view it directly from YouTube.

Enjoy!

Damn . . . Just Damn

Hi folks – sorry to start a new post off with that sort of tone, but I’m not sure there’s really any nicer way of putting it. My wife (and co-editor of this blog) Holly was recently diagnosed with Breast Cancer. A routine mammogram revealed the abnormality a few weeks back but it wasn’t until last week that we got the results of the biopsy, which showed the lump was cancerous.

Yesterday Holly had a lumpectomy at Gwinnett Medical Center, under the care of Dr. Wallace Martin. The surgery went as well as could be expected. The surgeon removed only 3 sentinel lymph nodes (the fewer the better), all of which (at the time) were negative for cancer. The tumor itself was about 2 centimeters in size and was removed along with the surrounding tissue (a.k.a., the margin). No drains were installed, which should make the healing easier or at least less complicated.

The lymph nodes, margins, and the tumor itself were then put though more exhaustive tests in the lab. We got a call back from the doctor’s office this afternoon with the pathology of these tissue samples. The good news is that the margins were negative, though we learned today that the surgeon had to cut into the chest muscle in order to ensure negative margins. The bad news, however, is that the lymph nodes were positive for microscopic cancer cells. As a result, she will need to go back in for a lymph node dissection, where they’ll surgically remove more lymph nodes and then put drains in. This is scheduled for next Tuesday (3/10).

Prior to that, however, we have a follow-up appointment with Dr. Martin on Monday (3/9). It is then that we should learn more about the type of cancer cells we’re dealing with and learn of a proposed treatment plan. All indications are that she will likely undergo radiation therapy, though chemotherapy has not been ruled out.

All I can say is it feels different when the shoe is on the other foot. I’ve accepted the fact that I’m fighting (and I believe winning) my battle with Sarcoma. That was OK with me. But now Holly has breast cancer?!? That really hurts. I guess I never really understood how she felt when she learned of my diagnosis until just yesterday in surgery when her diagnosis began to sink in.

I’m sure many may wonder why this is all happening to us. Some may even speculate various environmental theories as to the cause of a husband and wife within the same household both going through cancer at the same time. Yes this is rare and it’s only natural to think along these lines. However, to be quite frank, I really don’t care why this happening or what the cause might be since nobody can definitely answer such questions. I’ve never seen anything good come out of pondering such topics (especially as a cancer patient), which was one of the themes of my post on 2/23/2009. Instead, I’d much rather focus my energies on beating this thing and being a supportive, compassionate husband.

My next challenge will be to figure out a way to break this news to my two boys (neither know anything beyond the surgery). If I can just manage to hold them off for a few more weeks (until after my surgery), perhaps then it will be easier for them to bear such news (knowing that I’m nearing the end of my battle). But I think I should just stop overanalyzing the situation and take my own “one day at a time” advice here. I just pray that my kids will have the strength to handle such news . . . whenever it comes.

I’m planning for this to be my last post regarding Holly. Hopefully she will start a blog of her own, which I will add to the list of blogs that I follow.

Stay of Execution

Brief Update --

I got word today from my doctor's office that my surgery has been postponed for a week. My new surgery date is March 18, at 8:30am (which means I have to be there at 6:30am). It was kind of funny because they offered to do it on the 13th (Friday the 13th to be specific), but I said "no way".

Oh well . . . at least now I have an extra week to wrap up on stuff at work and on the home front.

Moments in Sarcoma

The Team Sarcoma Initiative (http://www.team-sarcoma.net/) has recently put out a request for Sarcoma patients and their families to write "Moments in Sarcoma".

This is a new project that will publish moments from the lives of patients and their families, doctors, researchers, and friends. Submissions are invited during the month of February. Then one submission will be published daily on the Team Sarcoma Website starting in May or June, continuing through the International Sarcoma Awareness Week in July and ending when all chosen moments have been published.

As a part of this very special project, one patient or survivor who submits a Moment by March 1 will be awarded a sponsorship of at least $2,000 (there may also be the possibility of some travel assistance) to participate in the 2009 "Core" Team Sarcoma Bike Tour during July 18-25, 2009.

For more details, see http://www.team-sarcoma.net/moments.html. All submissions must be 300 words or less.

Weighing in at 297 words, here is my submission:


“One Day at a Time”

So I’ve been battling Myxoid Liposarcoma now since July, 2008. I probably had this condition a year prior but just never knew it. Life was good and everything was easy. Then came the rather shocking diagnosis and even scarier “treatment” plan. At the time I wondered, “Why did this happen to me? Am I going to survive this ordeal?”

I’ve since endured 6 five-day cycles of intensive chemotherapy (over 4 months), numerous emergency trips to the hospital, 25 rounds of radiation (over 5 weeks), and surgery is only days away. I’ll be honest: the chemo sucked . . . and the smelly hospital food was even worse! My strong recommendation is to order takeout from your favorite restaurants instead. Whatever sounds appealing is what you should eat.

In contrast, the radiation treatment was a cakewalk. Sure, I now have funny tan lines on my left thigh and a little “sunburn”, but who cares! Life is good again, my appetite is back, and I’m even working fulltime (which I find quite therapeutic). It turns out that I work with some pretty darn funny guys . . . and it does feel good to laugh again.

If my sarcoma journey has taught me anything, I’ve learned to cherish the good times, enjoy my family and friends, have a few laughs, and even appreciate a fine meal. I refuse to dwell on the negative or live in fear. Yes, I concede that I am not in control of my destiny, but I am steadfast in my resolve to enjoy life and be thankful for all of the “easy times” that come my way (like now). I no longer grapple with questions that cannot be answered, but instead take things one day at a time.

http://dnovak-liposarcoma.blogspot.com

Scans all look good

Just a quick update – the preliminary results on both my CT Scan and the MRI are positive. No spread of the cancer was readily evident in the CT Scan and the MRI showed some further shrinkage of the tumor. The official report from the Radiologist should be out later this week and they'll let me know if the news is any different.

I also have a surgical date/time set up: Wednesday, March 11, at noon. According to the doc, I should be out of the hospital within 2 days and then on crutches “only as necessary for balance”. Dr. Monson also stated that they would be putting staples and drains in my leg, all of which would come out 3 weeks post op. Beyond that, he said that I was looking great and that he didn’t expect any problems with either the surgery or my recovery.

What more could I ask for?!?

UPDATE 2/18/2009 --
I got a call this morning from my doctor's office to let me know that the "official" radiology report for my CT Scan has confirmed that there was no apparent spread of the cancer. Yeah!

Radiation Cycle Complete

In fact, this past Wednesday (February 11) was my last day. It all went without a hitch with virtually no pain, swelling, redness, or other complications. Even the fatigue factor seemed to lessen as the weeks wore on. I’m so happy now that I don’t have to make the long drive to Crawford Long every morning. This saves me over 50 miles each day.

I found it rather humorous that on my last day the radiation techs gave me a “graduation day” certificate, signed by all the good folks that work there (they were awesome). It was actually a very kind and sincere gesture that they do for all of their patients. I found “humor” in it, however, because my 25 rounds of radiation was nothing when compared to even 1 round of the “intensive chemotherapy” (out of 6) that I went though previously. And I got nothing to commemorate that graduation . . . not even an “I survived chemotherapy” certificate. So, the next time I see Dr. D’Amato, I’ll have to show her my fancy radiation certificate and then demand some sort of gold plated commemorative plaque for all of the chemotherapy she put me through! I see her again in about two weeks and will be sure to bring it up.

One thing that I think helped make my radiation treatment go faster and seemingly trouble-free was my job. I’m thankful that work kept me quite busy during this time so I had little opportunity to dwell on any possible side effects. Actually, working fulltime again has been extremely therapeutic. It’s fun and fulfilling and keeps my mind from wondering towards negative thoughts. I actually will be flying out to Costa Rica on a business trip here in another week. I’m really looking forward to seeing my colleagues down there.

In the meantime, I have a “reality check” coming up this week. On Tuesday (February 17) I go in for a Chest, Abdomen, and Pelvis (CAP) CT Scan and an MRI of my left thigh. The CAP CT Scan is my quarterly scan to check for any spread of the cancer. (Yes, this is the one where I have to drink the disgusting barium “Berry Smoothie” the night before and the morning of.) The MRI (at this point) is for pre-surgical analysis of my leg. I also will be seeing Dr. Monson (my orthopedic surgeon) who should give me a firm date for my operation and provide me with details as to my expected recovery. I’ll let you know how that goes either later Tuesday or Wednesday.

Half-way through radiation treatment

Well, I'm half-way through my radiation treatment at this point and should finish up with that on February 10. Other than feeling more fatigued than usual, things are going quite well. I've had no real side-effects from the radiation (other than fatigue) and I've pretty much gotten used to my week day morning commutes to Crawford Long. I'm usually in and out of there within 20 minutes. Oh, and they finally got me turned around on the table so that my head's where it should be (instead of hanging over the edge and touching the rotating radiation arm).

I'm also back to work full time now and going to the office every day. Combine all of that with having my full appetite back and life looks pretty "normal" to me at this point. So normal, in fact, that I have to remind myself from time to time that I'm far from being out of the woods here with this cancer thing. I'm just relieved that the radiation is so much easier to handle than the chemo. No comparison!

I know I've been lazy about making blog updates lately, but you can always assume that "no news is good news" if you haven't seen a post. In fact, you probably won't hear from me again until after my radiation treatment is complete. At that point, I'll be given 3 - 4 weeks of recovery time before they operate on my leg.

1 down, 24 to go

Yesterday morning (Monday) I had my Plan Verification Simulation, which went OK other than the fact that it appears as though the folks that did my CT Simulation put me on the table backwards. The end result for my radiation treatment is that my head hangs off the table by about 6 inches (not too comfortable). This was not a problem during the CT Simulation though since they can freely move the table into and out of the CT Scan "doughnut". But with the radiation equipment, there is no hole, only a wall. They resolved this as best as they could by adding a Plexiglas plate to the end of the table. My bald head now rests comfortably on a pillow on top of this makeshift extension, though the back of my head touches the cold steel of the radiation arm. But hey, whatever works, just so long as I'm aligned properly so that they treat the right area.

This afternoon (Tuesday) I had my first radiation treatment. Though the radiation portion of the treatment took less than 5 minutes, it took an additional 45 minutes to align and re-verify (via x-ray) the treatment fields. The attending doctor confirmed that I was aligned "perfectly". The treatment itself was breeze and completely painless. In fact, it was exactly the same as the verification x-rays they took, just longer (about 30 seconds per position).

Hopefully tomorrow and subsequent days I can get in and out of the radiation room within 15 minutes. But I'm not complaining -- anything is better than chemo!

Happy New Year!

Well, it's been a while since Dave (or I) have made a post and I wanted to wish everyone a Happy New Year. I don't think Dave will mind me making a post, since he's usually asked, "When are you going to update your blog?" and this is one less post he'll need to make!

Everything has actually been pretty great as of late. I know Dave is just in the middle of his fight against cancer, but it seems since the chemo is done, his appetite has returned to normal, his strength is returning, that life is good. I know we're still fighting the beast of cancer, but it's just nice that things are "normal" even if it's for a little while.

Our family had a nice Christmas, quiet, just the four of us, but that's what we requested. The boys loved their gifts, building their K'nex with Dave's help and playing new Xbox games. We went to see Dave's family in Knoxville, TN the next day and had a wonderful weekend with them. The last time we were in Knoxville was when Dave's sister saw his left thigh (the "big muscle" as we called it) and got the whole ball rolling with this cancer thing. We're still so thankful we made that trip in June and that Dave didn't wait any longer to get his leg looked at.

Dave went to Emory this past Tuesday for the 1st Simulation for the Radiation Therapy. He now has nice "Sharpie" marks on his thighs...don't want those to come off, that's for sure! He has another appointment next Monday with the Radiation Oncologist and then the radiation will begin.

So, here's to wishing all of you a Happy Healthy 2009. Thanks to all of you for your prayers and continued support.