Tuesday, October 28, 2008

Last week’s tests all OK

I had a follow-up appointment yesterday with Dr. Gina D’Amato to discuss my MRI and CT scan from last week (amongst other things). The CT scan revealed no metastasis and the MRI showed that the tumor did shrink, though not as much as after my previous MRI from 6 weeks ago. This is all good news and means that I will get 2 more rounds of chemo.

One of the main purposes of the chemo (as I was reminded) is to prevent the spread of the tumor to other parts of my body. The idea is that if the chemo is shrinking my tumor (even minimally), it is killing the tumor. Therefore, if the tumor was to spread, the chemo should kill it before it has a chance to establish itself elsewhere. This is why the good doctor still insists on 2 more rounds of chemo.

But the really good news (in my opinion) is that the promised 25% less Ifosfamide for rounds #5 and #6 translates to 1 less day in the hospital! You see, I normally get 4 days worth of Ifosfamide, so now I only need 3. My dosage of Doxorubicin (a.k.a., Adriamycin) will remain unchanged at 3 days. I’m soooo happy to be getting out of jail a day early! Round #5 will begin next Monday (11/03/2008).

Radiation Therapy
To update you on the radiation front, it was decided in the Sarcoma board meeting last Thursday that I am to receive radiation therapy prior to surgery. I presume this means 25 rounds over 5 weeks, though I have not yet been given those details. Doing this all before my operation seems right to me and makes things less complicated. Though it will be inconvenient to drive to Crawford Long every day, I am told that the radiation treatments themselves go very quickly and are not debilitating like chemo. This would give me a chance to work and do whatever I need to do during this period.

Chemo Buddies
I saw some old friends while at the doctor’s office yesterday. I saw Donald (and his wife Tracy), who is now on a slightly different schedule than me (which is what I had guessed before). I had not seen him since Round #3. Donald seems to be doing well and is getting close to having surgery.

I also saw Conjetta, who I had not seen since Round #2. Conjetta is one strong young lady, who endured nearly 6 months of the same intensive chemo that Donald and I receive but with no success. The doctor had since changed the treatment plan and she is now seeing a good bit of progress with a far lesser dose chemo. I am so happy for her.

Though we really hardly know each other, there is definitely a kinship between Sarcoma patients.

Tuesday, October 21, 2008

Preliminary Test Results Look Good

CT Scan
Thankfully, I managed to choke down both bottles of Berry Smoothie flavor barium sulfate without getting sick, which was an accomplishment itself in my book. The CT Scan went very quickly (only about 20 minutes). Dr. Monson's preliminary review of the scan revealed no abnormalities, though he made it clear to wait on the radiology report for the definitive word.

Oh, and Kelly, I managed to pick up an extra bottle of the Berry Smoothie flavor just for you! Next time I'm in the office (likely sometime next week), I'll bring in it in for your lunch. Enjoy!

MRI Results
Dr. Monson stated that the tumor looked like it was shrinking as expected. Therefore, I'll definitely be getting Round #5 and Round #6 of chemo in the weeks to come. Dr. D'Amato will have more exacting shrinkage measurements for me in my appointment next week.

Radiation Surprise
Now it was my understanding that I was only to receive radiation if the chemo was not working. This apparently is not the case. Dr. Monson stated today that there is a definite plan for radiation, with the only question being before or after surgery. He will be discussing my case at the Sarcoma board meeting this Thursday night. Dr. D'Amato and other Sarcoma specialists will be in attendance and vote on the best course of action. I should know Friday what they've decided. I got the impression, however, that they would likely vote for 25 rounds (5-days a week for 5 weeks) of radiation a few weeks after Round #6 of chemo and before the surgery. Just when I thought I was almost out of the woods!

Update: bacteria cultures negative
I received a call back from D'Amato's office this evening stating that there was no growth in my bacteria cultures. Yeah! At least that should be one less thing to worry about.

Monday, October 20, 2008

Diagnostic Tests Tomorrow

CT Scan
Well, lucky me made it out of the hospital and recovered just in time to keep my previously scheduled appointments for two detailed diagnostic tests tomorrow (Tuesday) morning. The first of these is a CT Stan aimed at my Chest, Abdomen, and Pelvic region to see if the cancer has spread. The most challenging part of this test is drinking (and keeping down) the 2 half-liter bottles of barium sulfate suspension (one I take tonight, the other I take in the morning). Given my chemo regime and my generally weak stomach, this is indeed tough. Last time I tried the Apple Smoothie flavor and it really sucked. I had hoped they might have the new Creamy Vanilla flavor, but they don't carry that yet. So I'm trying Berry Smoothie flavor . . . and just hope I can keep it down. I survived it last time, but I'm a little worse for wear than I was 3 months ago when I had my first CT scan.

MRI with Contrast
Following the CT scan I will have an MRI on my left thigh. This should be a piece of cake (assuming I'm not sick from the previous test). Given the number of pictures they take and the contrast that gets added at the end, this test takes close to an hour.

Test Results
Following these tests, I have an appointment with Dr. David Monson to review the preliminary results of these tests. I will not know definitive results until my follow-up appointment with Dr. Gina D’Amato next Monday (10/27/2008).
Note to Family: please don't call asking for the test results! I will post the preliminary results just as soon as I get home (hopefully before 5:00pm). I would greatly appreciate your patience here.

Expected Outcome of Tests
Quite honestly, I'm optimistic that the CT Scan will show no spread of the cancer (I'd be shocked otherwise). Just keep in mind that it's much harder to give a quick and accurate reading of an entire Chest, Abdomen, and Pelvic scan than it is to examine the MRI of my left thigh (so best that we defer final judgment here to the Radiologist, whose results I'll get next week).
As to the MRI, I fully expect to see further shrinking of the tumor. Just how much I cannot say, but Dr. Monson should be able to provide good feedback here.

Oh yeah . . . that other test
I will also have to follow up tomorrow with Dr. D'Amato about the results of my bacteria cultures taken Sunday prior to my hospital departure. With any luck, there will be no further evidence of any secondary infection. I'll keep you posted with what I find out here as well.

Sunday, October 19, 2008

I check out today . . . noonish

More good news – my white blood count (WBC) has gone up significantly since yesterday. This morning it was 3.0, compared to 0.7 yesterday morning, and 0.2 the previous morning. As to my ANC, the doctor didn’t have an exact figure, but estimated it to be near 1500 given the status of my WBC count. He is pleased with my progress.

The only lingering concern is that my bacteria cultures (drawn when I was first admitted) seem to indicate that I have some internal infection. The doctor explained to me that once my neutrophil counts dropped as dangerously low as they did earlier this week, bacteria in my body (likely E. Coli) spread from their natural habitat (my intestines) into other parts of my body. It is the job of the neutrophils to keep such bacteria under control and in their place.

To combat this infection, the doctor had me on two type of antibiotics: Cephapine and Levaquin. Further examinations of my blood and cultures showed that the bacteria was resistant to at least one of these antibiotics. The doctor’s hunch (for various reasons) is that the bacteria is resistant to Cephapine and that the Levaquin is likely working, but there is no absolute proof of that. The biggest proof, however, it that I’m doing fine at this time, largely because of my nearly normal neutrophil counts and possibly aided by the Levaquin.

To monitor this infection (or confirm it has already been cleared up), new cultures were drawn on me this morning, the results for which I should have by Tuesday (they take a while). Also, to help ensure this infection does not spread, I will be taking Levaquin at home until I know my results are clean. Hopefully this bump in the road will all be behind my on Tuesday.

In the meantime, I’ve been cleared to eat foods external to the hospital. Yeah! I can just smell those Varsity dogs now and their “mobile van” (i.e., Holly) is headed my way shortly.

Time to get packed up and ready for lunch!

Saturday, October 18, 2008

Turned a corner last night

Great news! My hemoglobin and hematocrit counts are now back on the rise (though still a little low). Even more importantly, my neutrophil counts still have gone up quite significantly. As of this morning, my absolute neutrophil count (ANC) was 420, which, being less than 500, means I’m still in the severe range, but a far cry from the 18 I had when I was admitted.

The one other level that my doctors wanted to address was my low platelet count. To that end, I was given a transfusion of platelets this afternoon. Sunday morning’s blood draws will show if this helped. Long story short, if my progress continues forward as it is, I will likely be discharged tomorrow.

My thanks to everyone for their thoughts, prayers, and support. This particular scenario was a close call for me and one that I hope never to repeat.

Friday, October 17, 2008

Neutrophil Update

After one blood transfusion yesterday, my hemoglobin and hematocrit counts had amazingly dropped even more (which is bad) and my neutrophil counts still have not budged (even worse). I am undergoing my second transfusion at this time though these will have no impact on my neutrophil counts whatsoever since the transfusions only supply red blood cells. There is no “transfusion” to give you more neutrophils; it’s completely up to my bone marrow to do that . . . and it had better start soon.

I’m “talking” to my bone marrow now, but I’m not so sure that it’s working. Any prayers that can offer up would be greatly appreciated.

As Holly mentioned, it looks like I won't be getting out of here until much later this weekend, if not early next week. I can only hope it will be soon as this time I am forced to eat hospital food and Holly cannot bring in any outside food (for fear of contamination). Just swell. Sounds like I’ll be drinking lots of Ensure and Boost instead.

Quick Update

I spoke with Dave this morning and he told me that he'll most likely be in the hospital until late this weekend or early next week. His neutrophil counts haven't budged....errrrr. I'm on my way to see him and thought you'd want to know his progress...

Thursday, October 16, 2008

Dave's back in the hospital

Well, Dave said he jinxed himself by posting the blog yesterday about being "on the mend". He felt REALLY run down last night after dinner and by 10:00 pm, he was running a fever and had some serious chills. He woke up this morning and his fever was 103.1...so, I got our neighbor to come get the boys on the bus and I took Dave down to the Winship Cancer Center where Dr. D'Amato works. Unfortunately, she is out of town, so, the kind nurse escorted us to the E/R at Crawford Long. They drew labs on Dave and got his IV's going...it turns out, his absolute neutrophil count (ANC) was 18 (critically low). The doctors want to see the numbers over 1000. After his first round of Chemo when he got the neutropenic fever, his ANC was 240 . . . and we thought that was bad.

Because Dave's numbers were so low (and his hemoglobins were also low), he got admitted to the hospital this afternoon. He is in a room now at Crawford Long, Room 7120. He needs his rest and we're hoping he'll feel better soon after the transfusion and when his white cell count comes back up.

As always, thank you for your prayers and support. Yes, this too shall pass and we'll look back on it one day understanding the journey of cancer...it'll be nice to get to the end of that journey.

Wednesday, October 15, 2008

On the mend

Well, so far my time at home for Round #4 is going much better than it had for the previous round and I believe that much of the credit goes to a new anti-nausea drug I started Monday called Emend. One frequent poster on this blog suggested this helpful forum, http://abc-survivors.net/connect/index.php?topic=261.0, which discussed the topic of How do you deal with Nausea? A number of posters there mentioned Emend, so I got that worked out with my doctor and started taking it. So far, it's really made a difference.

Saturday, October 11, 2008

Round #4 is done, the patient is home...

Yesterday I brought Dave home around lunch time. It was so nice to have him home since it was our 21st wedding anniversary. Some of you reading this may not know, but Dave had a brain tumor (benign), 8 years ago, and he was in the hospital on our 13th wedding anniversary awaiting surgery the next day. So, we decided we'd celebrate this anniversary after he's done with his chemo and surgery and is feeling up to going out on a real date. That is definitely something to look forward to! So, a rain check it is...

We agreed for some reason that Round #4 flew by...both at home and the hospital. That's a good thing. Definitely a week that you want to go by quickly. Hey, if it's getting him Taste of Thai every day for lunch, I'm quite happy to do it!

I took him in for his Neulasta shot this morning while a neighbor watched the boys (THANKS JOANN!) We get down to Emory University Hospital and are hoping it'll be a quick appointment. About 3 hours later we get back home...ugh, nothing quick about that.

So, we're home, Dave's resting and fighting nausea (as usual at this point) and he's about to watch UT play Georgia on TiVo...I hope that doesn't contribute to his nausea even more!! We shall see...

Thursday, October 9, 2008

Round #4 Coming to a Close

Thankfully, I’m down to under about 24 hours before I get out of here (ETA Friday, 11:00 AM). Yeah! I can’t wait to leave. All things considered, I’ve done fairly well in the hospital with this round, with much of the credit going to Holly for bringing me my favorite Taste of Thai dish every day for lunch. In other words, the key to feeling healthy is to avoid the hospital food at all costs!

Bryce’s 4th grade class brought me a special surprise Tuesday
My oldest son, Bryce, conspired with his 4th grade teacher (Tangie Wilkins) to make me a really nice poster for my hospital room. According to Ms. Wilkins, Bryce insisted that the class spend at least 2 days working on it. Well, the poster looks great and I very much appreciate how special this class and their teacher made me feel.

Class Poster

My boys are missing me
Here are two recent pictures of Bryce and Kyle who are missing me so much at home.

Don’t worry boys – I’ll be home tomorrow!

Monday, October 6, 2008

Round #4 Begins Now

It must be psychosomatic that I begin feeling nausea just as soon as I enter the hospital doors (and the chemo is still hours away). Likely this is some combination of fear of hospital food and anxiety about the chemo. I’m in room 7134, whose direct number is 404-686-7134.

You never call, you never write
My apologies for being so silent over the past few weeks. Round #3 was quite hard on me and I rarely felt like doing much of anything, least of all updating my blog. The chemo really takes it out of you, to the point that you lose your drive for most anything you love. It’s only been since Friday that I’ve been feeling half-way decent and yet my labs (taken this morning prior to admission) still show several levels in the low zone (namely hemoglobin and hematocrit). This likely explains my general fatigue.

Time off between rounds may increase
Dr. D’Amato mentioned today that my time between rounds may increase by a week to give me more time to recover at home (depending upon how I’m doing). Furthermore, she may also decrease my dosage of Ifosfamide for rounds #5 and #6 (my "last" 2 rounds) to make those more tolerable. For rounds #1 - #4 I’ve been getting the highest levels of Ifosfamide that she can prescribe. For the doctor who preached “tough love” a few weeks back, it was good to see some compassion.

One of my chemo buddies is missing
One of my chemo buddies (Donald) who is normally on my 3-week cycle is not here today. He’s exactly 1 round ahead of me so this would be round #5 for him. My guess is that he was converted to a 4-week cycle and, therefore, won’t be in until next week. It was always nice catching up with him to find out how the last round went. His summary of the previous round was always a good predictor of what side effects I too may experience. For example, both of us needed a blood transfusion after Round #3. So with him not here, I’m really not sure what to expect after I get home.

Here’s to a fast Round #4 in hospital and a steady recovery at home
Not to be a pessimist, but I have this sinking feeling that I will very likely need one or more transfusions after this round of chemo. I can only hope that this round will not be as painful as the last and that my recovery at home will be consistent. Your thoughts, prayers, and support are definitely appreciated.