Preemptive Strike

My sisters have voted and my hair has to go
Oh, I forgot to mention that my sisters have all voted and said that I should get my head shaved this weekend before treatment starts next week. Call it a preemptive strike. Why do such a crazy thing? Well, the good doctor has informed me that I will lose all of my hair within 2 – 3 weeks of my first chemo treatment. So, instead of waking up with clumps of hair on my pillow and shedding like an animal losing its winter coat, I think I’ll get rid of it all while I still feel fine and before it becomes a problem.

The “runt” of the litter?
Yes, after reviewing those pictures from yesterday and noting that I have three healthy, beautiful sisters, one cannot help but wonder if somehow I was the “runt” of the litter (at least health and looks wise). I’m stating this now as a “preemptive strike” to ward off similar comments I might otherwise hear from my friends and buddies at work. And folks I’m not complaining . . . this is all in good fun. :)

Thank you Friends, Neighbors, and Family

I just wanted to thank everyone for their recent words of encouragement. Though I may not be able to reply to your posts, I assure you that I do read each and every one of these. Your support means so very much to me at this time.

Family in town this past weekend
The Novak clan rolled into town this past Thursday and Friday and we had a great weekend together. My sister Barbara, husband Tom, and their kids came down from Knoxville, TN. Together with my sister Deborah (from Cumming, GA), they managed to drive my parents down from Knoxville too. We all got together Saturday for a really nice BBQ dinner at my house. The 4 older nephews, my oldest son, and I also had a great time playing Xbox 360 games that afternoon. Thanks for the fun guys and sorry for any accidental team kills. :)

Here are some pictures from Saturday (click to enlarge):

Holly, me, mom

Barbara and me

Barbara, me, Holly, Deborah

On Sunday, we had an outstanding lunch at Deborah’s place (with husband Dan serving as grill chef). Making that visit even more special was the surprise arrival of my older sister Diane (from Lexington, KY) and her daughter Kayla. That’s one heck of a drive to make and I really enjoyed seeing them (we all missed them on Saturday).

Here are some pictures from Sunday (click to enlarge):

Deborah, mom, me, Barbara, Diane, dad

Deborah, Kayla, me, Barbara, Diane

Dad and me

Holly, me, Barbara

Update on Liver MRI

I got a call about an hour ago from Andre (of Dr. Monson's office) to say that my liver MRI came back clean (as they expected). This is probably the first real break I've had with this ordeal. Yeah!

Eight is Enough!

Late Thursday afternoon, I had the pleasure of meeting for the first time with my Medical Oncologist and Sarcoma specialist, Dr. Gina D’Amato. Apparently Dr. D’Amato is quite accomplished in her field, with glowing endorsements from her patients and their families, some of whom have traveled across the country to see her. Prior to her arrival at Emory, she was the recipient of the 2006 Excellence in Care Award. I’m very fortunate to have her as my Oncologist.

In my first meeting, Dr. D’Amato spent more than 1 hour with me, describing in detail the type of cancer I have, the proposed treatment, side effects, contingencies, etc. The level of detail was quite remarkable. She has a good sense of humor, [politely] laughs at my “jokes”, and maintains a positive outlook, all of which I definitely appreciate.

MRI of Right Axilla
I also got the word that she will be ordering an MRI of my right axilla. Apparently the CT scan from last week revealed a possibly abnormality that they need to check out. She thinks it’s probably just a Lipoma (I have several of those), but they need to rule out metastasis.

Cancer Linked to HGH?
As many of you know, I had a Pituitary Tumor nearly 8 years ago, which was surgically removed in October, 2000. Since that time, I have had to take several drugs to keep my endocrine levels in check. One such drug is called Genotropin (a brand of Human Growth Hormone, or HGH). Though there is no established research to “prove” that HGH causes cancer, there are some who would suggest that HGH increases cancer risks. I have been told to discontinue that drug.

Chemotherapy thought to help
Though sarcoma research does not have the wealth of numbers and supporting statistics as more popular forms of cancer (such as breast cancer), there is evidence to suggest that Myxoid Liposarcoma does respond well to chemotherapy. Though this is “good news”, it’s a far more difficult treatment option for the patient than radiation therapy. I should also point out that Dr. D’Amato was one of the 50 doctors present at the sarcoma conference last week where they discussed my case. She apparently took an interest in my case and made an exception in her scheduling to see me the following week.

Thank you sir! May I have another?
And now for the bad news: she has me signed up for numerous cycles of Intensive Chemotherapy. By “intensive”, this is to say that I will be in the hospital for 4 days with each cycle of treatment. This is necessary so that they can closely monitor what’s happening and be able to respond quickly should there be a problem. With each cycle, I will be given Doxorubicin as a continuous infusion for 72 hours and Ifosfamide in 4 separate, daily IV infusions. This cycle repeats every 3 weeks.

Detailed treatment plan and contingencies
Here’s a detailed outline of the proposed treatment:

1. Start with a baseline MRI of left thigh (needed to track progress).
2. Go through two cycles of chemotherapy (#1 and #2).
3. Do another MRI of left thigh.
4. If tumor has grown (unlikely), the chemotherapy is not working. In that case, we punt on further chemotherapy and opt instead for radiation therapy and then surgery.
5. If tumor has stopped growing, we do two more cycles of chemotherapy (#3 and #4).
6. Do another MRI of left thigh.
7. If tumor has not shrunk by now, the chemotherapy is not working as well as expected. In that case, we punt on further chemotherapy and opt instead for possible radiation therapy and then surgery.
8. If tumor has shrunk (expected), we do two more cycles of chemotherapy (#5 and #6).
9. After 6 cycles of chemotherapy (assuming expected behavior), I'm ready for surgery. Surgery is expected to keep me in the hospital for a few days and then put me on crutches for about a month.
10. Based upon the post surgical pathology of my tumor and surrounding tissues, it may be necessary to follow up with 2 additional cycles of chemotherapy (#7 and #8).

Yes indeed, I believe that eight is enough!

Scheduling
Thankfully for me, the good doctor is on vacation all of next week, which means that my first cycle won’t begin until the first week of August (scheduled now to start on Monday, August 4). In the meantime, I'll be getting my right axila MRI, baseline thigh MRI, MUGA scan, port placement, labs, orders, etc. all late next week.

Liver MRI

I had that done very early Thursday morning and, with any luck, will have the results of that on Friday. As of late Thursday afternoon, no results were available.

And yes, please expect an update soon with details from my visit with Dr. D’Amato. I hope that post will silence the threats of a “hostile takeover” of my blog. :)

New Subscription Links

Inspired by another blogger, I have added the ability to subscribe to updates either via email or by reader. If you subscribed to the previous reader, please re-subscribe using the updated/enhanced feed (which now goes through FeedBurner). I think it's quite an improvement.

And now for a technical question: does anyone know how to have the dates shown in the RSS feeds coincide with the dates shown on this blog site? This past weekend I backfilled entries of things that have happened over the past 5 weeks and overrode the default post date / time in the process (to match the date which they occurred). Nevertheless, the actual date of these posts is still known by BlogSpot and this is the date seen by RSS feeds. Is there any way for subscribers to see the dates as I’ve intended them? Any help is appreciated.

I feel fine!

It’s actually hard to believe that I have a life-threatening disease. I mean, I feel perfectly normal (which is good). If nothing else, I hope this is more evidence to suggest that the sarcoma is localized and has not spread elsewhere in my body.

Full Disclosure with my Boys

Now I didn’t keep my boys completely in the dark here. They did know that there was some issue with my leg and that I would eventually need an operation to remove the “bump”.

But then my 9 1/2 year-old boy (Bryce) saw my chest/abdomen/pelvic CT scan and asked, “but Daddy, if the problem is with your leg, why are they looking up there?” A great question, one I could no longer dodge. So I sat him down and let him know that I have a sarcoma or cancer and that it was going to get really tough for all of us in the coming months. He cried and gave me a strong hug. I then talked to my younger boy Kyle (7), who was very concerned that something might happen to “funny daddy”. (Yes, there are some who appreciate my attempts at “humor”.)

All things considered, the boys have been handling it very well.

"We're going to need to take a closer look at your liver"

So I get the call on Friday afternoon from Andre that the Radiology report came in regarding my CT scan and that a few potential abnormalities were noted with my liver. Though I was assured that this was likely nothing, my high-grade round cells are motivation enough to take a closer look to rule out metastasis.

I’m scheduled for an MRI next Thursday (7/24) at 6:30 AM at Crawford Long Hospital. (I guess I won’t be staying up late the night before.)

Good grief – I just can’t seem to catch a break here. I certainly hope this is nothing. I really don’t think it is.

Trip to Costa Rica on hold

Well, I was planning to be in San Jose, Costa Rica the week of July 21 – 25, but that trip will have to be put on hold now. I really enjoy going down there, helping out, cross-training, answering questions, and enjoying the company of a great group of people. They certainly know how to make you feel welcome.

Friends and esteemed colleagues in Costa Rica: I promise, after I beat this thing, I’ll be back. :)

I'm OK, but my Family is hurting

Perhaps I'm in denial, but the real "victim" here (as I see it) is my family – my wife, my sisters, and my mom and dad. They are all shocked by the diagnosis and torn up by what I’m about to go though. It really hurts to see them grieving.

But I think that “the rumors of my death have been greatly exaggerated” (or so I hope).

CT Scan Results, Detailed Diagnosis, Treatment Plan

Though my follow-up appointment with Dr. Monson was scheduled for immediately after the CT Scan, his office was totally slammed that day and we were informed that “Dr. Monson is running a full hour behind.” Even so, we (my wife, Holly, and brother-in-law Dan joined me today) were ushered into Room 3 after only about 45 minutes of waiting in the lobby. But this was just the beginning of our wait.

The things we do when we’re bored
We’re all bored to tears and anxious to hear how things went with the CT scan as well as hear about the treatment plan. So what to do in the meantime? Captain Dan calls for an impromptu inspection of our room and a full light check (pictured). I have to hand it to Dan – he sure made the wait bearable.






The Doctor is IN
Dr. Monson explained that the CT scan looked good to him, though we would have to wait for the “official” radiology report to be sure. What a relief. “So does this mean that the treatment plan is Radiation Therapy?”, I blurted out. “Well, not so fast. I think all of your questions will be answered in just a minute” was the response. I knew this wasn’t good.

Making the Grade
It turns out that there are different grades of sarcoma, most notably low grade and high grade. Low grade is commonly treated with radiation therapy whereas high grade typically requires treatment with chemotherapy. I am told that a further review of my biopsy slides indicated the presence of the Round Cell component, which makes me “high grade”. Because of the “high grade” classification, this puts me at Stage III in the cancer stage grouping. The recommended treatment, therefore, is chemotherapy.

Treatment Plan -- a.k.a., Battle of the Bulge
The chemotherapy is expected to be administered in 3-week intervals for about 3 months. Radiation therapy may be used as well. Once that's all over, they will surgically remove the mass, which should be non-cancerous at that point.

Dr. Gina D’Amato (an oncologist and sarcoma specialist) will be managing my chemotherapy. I meet with her next Thursday afternoon (7/24).

International Sarcoma Awareness Week
Quite surprisingly, I found out that July 12 – 20 was International Sarcoma Awareness Week. Furthermore, there was an event just yesterday in the Atlanta area that included a Walk for Sarcoma Awareness. If only I had known earlier, I would have gone.

50 specialists can’t be wrong!
It turns out that a group of doctors (sarcoma specialists I believe) happened to be in Atlanta this week for a Sarcoma conference (in conjunction with Sarcoma Awareness Week). I am told that my case was presented to this group of doctors and various treatment options were discussed. But the overriding consensus amongst these doctors was that Chemotherapy was my best option as it seems to do a good job of attacking the round cells that I have. I guess there’s not much call for a second opinion here since I already have 50.

My First CT Scan

Though I've had probably a dozen MRIs in my lifetime, this would be my first CT scan. The scan was aimed at my Chest, Abdomen, and Pelvic region to see if the cancer had spread. Making this particularly special was that I had to drink two big bottles of barium sulfate suspension, cleverly marketed as “fruit smoothies” (mine was Apple flavored). Trust me here – I’ve had smoothies for years and that, sir, is no smoothie. My stomach was upset all day thanks to that crap. I think I'll try the new Creamy Vanilla flavor if I have to do this again at some point.

The CT tech girl was very nice and explained clearly what to expect when they started the IV infusion (containing a contrast agent). Once that starts pumping, your entire body heats up for a few seconds. It’s a very strange feeling indeed.

But it was over very quickly and painlessly (the nausea aside). Now I head to see my doctor, get the CT scan results, and find out exactly where I’m at with this whole thing. I’m really hoping for Stage II (which would indicate a large but localized cancer, treatable with Radiation Therapy instead of Chemotherapy).

Below are photos of printouts of my CT Scan:

The biopsy results are in: Myxoid Liposarcoma

First, let me tell you that the last 5 days were the longest 5 days in my life. Waiting, wondering, and not knowing really stinks.

But I've got a lot of people pulling for me and praying for me that this would be benign, and this gives me strength. In my gut, though, I was fairly certain that I had some type of malignancy. I was just hoping it wasn’t that serious.

The diagnosis came Tuesday morning (July 15): Myxoid Liposarcoma. This meant that the CT scan (already scheduled for Thursday) was on. Why the CT scan? Because the Liposarcoma has a tendency to metastasize, spreading in particular to the lungs and the liver.

Now it was just a short 2-day wait for the CT scan, the results of that scan, and a detailed description of what I have.

I'm One in a Million!

OK -- that's a bit of a stretch, more like 2 1/2 in a million (according to some sources).

As the doctor mentioned, liposarcoma is very rare. I’ve read stats that indicate there are only 2 1/2 in a million cases per year (or < 800 new cases in the US alone). Other sources indicate fewer than 500 cases per year in the US.

Meet the Doctor, do the Biopsy

My biopsy appointment with Dr. Monson was 11:00 AM on Thursday, July 10. What a professional staff he has. They are really great people who seem to genuinely like their job. And despite a crowded lobby, I got in pretty quickly.

I was first greeted by Andre, who is either a Doctor or a PA, but an assistant to Dr. Monson in any case. Really nice guy. He did the preliminary work-up on me and then later returned with Dr. Monson.

We first went over the MRI results and talked about what this “could” be. Though this presented like a sarcoma, I was told that sarcomas are rare and that this could be something completely different. A benign tumor was the more likely the culprit. Either way, “we would have to wait for the results of the Biopsy in order to know for sure.” I was told that it would be 3 – 4 business days to get the results (which was a great relief).

The biopsy itself was totally painless, except for the numbing solution they used, which burned like a mother! Yes, I was warned that it would burn and that this would be the worst part, but it felt like a darn blowtorch for about 10 seconds . . . then nothing. He then used a wide needle (shown here) to do what is called a core biopsy. These pretty much operate under the same principal as the large, hollow steel tubes that are used for collecting core samples of earth, just much smaller.

Dr. Monson asked to set up a follow-up appointment for next Thursday (July 17), which would include a CT scan and then a detailed plan for treating whatever I have. What really impressed me was the foresight to set up the CT scan, which he said was because we were going to “act presumptively that this is a cancer so that we don’t have to wait yet another week if the biopsy report indicates a malignancy.”

Overall, I was very impressed with Dr. Monson and his staff and knew that I was in good hands. Unfortunately, I did not share in their optimism that my case was benign (though I wanted to). Instead, I was happy that the next step (CT scan) was already scheduled.

Now we wait . . . and wait . . . for what feels like an eternity for the results.

I know a guy who knows a guy

Playing the waiting game is never fun, especially when you think you might have a life-threatening disease. It’s Friday, the 4th of July, and I still have no appointment to see the specialist I need to see and all such offices are closed until Monday.

So, Monday morning, 10:00am rolls around and I still have not heard anything so I call. The next appointment that I’m able to get with this doctor is on Tuesday, July 15 (exactly 2 weeks after my initial MRI results). I’m also told that it takes from “1 to 3 weeks to get the results of the biopsy” (which I hoped was a high estimate). In any case, I was able to get scheduled for Friday the 11th by going with Dr. Monson’s partner. That was fine by me as it got me in 2 days (plus the weekend) earlier.

But just a second here – I may have an Ace up my sleeve to play. You see, it turns out that my next door neighbor (a Psychiatrist) had worked at Emory for 10 years and still knows a number of people down there. Without revealing all of the secrets here, let’s just say that the medical community is a tight knit group and special requests amongst doctors seem to be given priority. This worked out well for me as I received a call “out of the blue” from Dr. Monson’s administrative assistant later that week who got me scheduled for my biopsy with Dr. Monson on Thursday, July 10.

I’m sure glad to have friends and neighbors like I have.

"I'm afraid I have some bad news"

So I got a call back from Resurgens Orthopaedics on Tuesday, July 1, stating that they had received and reviewed my radiology report. Unfortunately, the report was rather vague and simply stated that I have a “large soft tissue mass” on my left thigh (which I assumed was codespeak for tumor). I pretty much knew that already – I just wanted to know exactly what it was and whether or not it was cancerous.

The PA at Resurgens (Teddi) was great and asked me to bring in my MRI films to be reviewed by their Radiologist (who was, sadly, was on vacation until Thursday). But as promised, Teddi called me back the morning of Thursday, July 3, and said that their Radiologist had reviewed my films that morning. She then when on to say “I'm afraid I have some bad news. Our Radiologist believes that the mass is likely either Malignant Fibrous Histiocytoma or Liposarcoma. You need to get this biopsied ASAP in order to know for sure what this is.” She then referred me to an Orthopedic Oncologist who they believe is the “best in the area”: Dr. David Monson, of Emory Crawford Long Hospital. Now I just needed to make the appointment.

But that was easier said than done. Turns out that this guy is such a specialist that you must be referred to him and the referring doctor must fax over records. Teddi to the rescue again. She had that covered quickly. It was now just a matter of waiting to be called back. But with the 4th of July right around the corner and many people gone on vacation (or headed out early), that wasn't going to happen quickly.

I have to say how impressed I was by the staff at Resurgens Orthopaedics, Teddi in particular. They all showed a lot of compassion and were very prompt and professional about following up with me.