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 28, 2008
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.
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.
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!
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.
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.
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.
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...
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 PosterMy boys are missing me
Here are two recent pictures of Bryce and Kyle who are missing me so much at home.
Bryce
Kyle
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.
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.
Tuesday, September 30, 2008
No news is good news.....
Yesterday I asked Dave if he was going to do an update on his blog. He said he didn't really have anything to say...so, here I am reporting that my husband is feeling better and isn't going to do an update! He started perking up yesterday to where I could tell he's feeling better, which I'm so thankful for. Last week really scared me. He was feeling better after the blood transfusion but was still really tired. Each day he's been getting more color, more of an appetite, a little more energy.
So, my thanks to you for your prayers and words of encouragement as we're in the middle of our journey. Here's to a good week!
So, my thanks to you for your prayers and words of encouragement as we're in the middle of our journey. Here's to a good week!
Friday, September 26, 2008
Dave's back home...
Just a quick note to let you know that Dave is home from the hospital. He's feeling somewhat better, still a little tired. Personally, between you and me, he looks A LOT better...he was really "grey" looking yesterday. I'm thankful he's back home, has an appetite and a LOT more energy...even if he is tired.
More later...
More later...
Thursday, September 25, 2008
Dave's getting a blood transfusion...
Yes, it's me, Holly, yet again! Well, we've known that Dave has been very, very tired and has not really had much of an appetite since he got out of the hospital last Friday. Fortunately, he had a good day yesterday, which was his birthday. He got up this morning though and was just incredibly tired and had absolutely no energy at all. We got a call from Joan, Dr. D'Amato's nurse, who told us that Dave's levels were critical...yikes...his hematocrit, hemoglobin and white cells were ALL critical and some of the others (potassium, etc) were "just low"...so, back to the hospital we go. Yep, Dave got admitted to Crawford Long around 1:00 pm and was in his room at 3:00 pm today. He's supposed to receive 2 pints of blood and supposedly he feel like a new man tomorrow. Hopefully he'll get a good nights rest and I can go pick him up tomorrow after the kids get on the bus.
So, keep him in your prayers and thank goodness he has a great doc and we live close enough where we can get him treated so he'll be good as new in a day!
Take Care, Holly
So, keep him in your prayers and thank goodness he has a great doc and we live close enough where we can get him treated so he'll be good as new in a day!
Take Care, Holly
Wednesday, September 24, 2008
It's Dave's birthday, it's Dave's birthday...
Dave would probably have my head if he knew I was writing this, but I figured after everthing the man has gone through in the last 2 1/2 months, the world should know that it's his birthday! Yesterday, he was walking through the kitchen and looked at the calendar on the wall. He goes, "If I hadn't just looked at the calendar and seen that tomorrow was my birthday, I wouldn't have had any idea it was coming up." We made an arrangement that I'll make his favorite German Chocolate Cake later on, anytime he wants it and can enjoy it...
Yesterday was a little bit better for Dave in case you're wondering. The nausea had subsided a bit but he was soooooo tired. Today through Saturday marks the phase when his white cells drop to their lowest, so hopefully he'll pull through it with no high fever or trips to the ER.
Well, I'm off to get the boys ready for school. Have a good day, hopefully the birthday boy will too! ;-)
Yesterday was a little bit better for Dave in case you're wondering. The nausea had subsided a bit but he was soooooo tired. Today through Saturday marks the phase when his white cells drop to their lowest, so hopefully he'll pull through it with no high fever or trips to the ER.
Well, I'm off to get the boys ready for school. Have a good day, hopefully the birthday boy will too! ;-)
Sunday, September 21, 2008
Round #3 is Completed, the Patient is home...
Hey there, it's me (Holly) again. Dave would be updating the blog, but, due to the fact that he's fighting some really bad nausea at this time, he requested I make the update.
Well, Round #3 went by quickly (for some of us) and we're glad it's over. It looks like this may mark the half-way point with the chemo which is awesome. We're so thankful the tumor is smaller, if only the side effects weren't so harsh on Dave. It's temporary and he's going to beat this thing!
My mom and niece came and spent the first 1/2 of the week with me to help with the boys. Bryce & Kyle love having the company and it helps me out a bunch...I'm much appreciative for the help. Dave's parents and sister, Barbara, came into town on Thursday. They went to spend time with Dave at the hospital and then came up to the house to spend time with me and the boys.
Friday, Dave was READY to blow the popsicle stand. I think the worst part of Round #3 for him was boredom. On Monday when he was getting hooked up to the chemo, he was practically counting the hours until the final Mesna would be done so he could check out. Friday morning, when Barbara & I went to pick him up, he had pretty much packed up his all his things and only needed to change his shirt when his port was de-accessed. He did an awesome job walking laps (of the 7th floor), not only because it's good for him to move around, but to help pass the time. He didn't even want the wheelchair trip down to the car, nope, he walked across the street to the parking lot. He was so glad to be out of there!
Now that he's home, his main problem has been the nausea, but he's managing it with meds and having me put anything smelly in our garage fridge. Hopefully this will be short-lived and he'll perk up soon.
Well, that's all for now...
Well, Round #3 went by quickly (for some of us) and we're glad it's over. It looks like this may mark the half-way point with the chemo which is awesome. We're so thankful the tumor is smaller, if only the side effects weren't so harsh on Dave. It's temporary and he's going to beat this thing!
My mom and niece came and spent the first 1/2 of the week with me to help with the boys. Bryce & Kyle love having the company and it helps me out a bunch...I'm much appreciative for the help. Dave's parents and sister, Barbara, came into town on Thursday. They went to spend time with Dave at the hospital and then came up to the house to spend time with me and the boys.
Friday, Dave was READY to blow the popsicle stand. I think the worst part of Round #3 for him was boredom. On Monday when he was getting hooked up to the chemo, he was practically counting the hours until the final Mesna would be done so he could check out. Friday morning, when Barbara & I went to pick him up, he had pretty much packed up his all his things and only needed to change his shirt when his port was de-accessed. He did an awesome job walking laps (of the 7th floor), not only because it's good for him to move around, but to help pass the time. He didn't even want the wheelchair trip down to the car, nope, he walked across the street to the parking lot. He was so glad to be out of there!
Now that he's home, his main problem has been the nausea, but he's managing it with meds and having me put anything smelly in our garage fridge. Hopefully this will be short-lived and he'll perk up soon.
Well, that's all for now...
Wednesday, September 17, 2008
Day #3 of Round #3 and all is well!
I’m very happy to report that all is going quite smoothly thus far with Round #3. Even my appetite and nausea is in much better check than in previous rounds. I credit that at least somewhat to Holly for bringing me some of my favorite food and drinks (spicy ramen noodle soup, smoothies, Orange G2, and CranApple juice). These good foods/drinks seem to be helping me to tolerate better the Hospital food. Hey, whatever works!
Out of here Friday noon
Due to some juggling of my chemo and other drugs, it turns out that I should be getting out of here around noon on Friday. This is so much better than previously where I was released late Friday evening and as late as Saturday afternoon. This too makes me a happy camper!
Clarification on Shrinkage
Since everyone had so much fun with my shrinkage comments of the other day, I figured I should share that Dr. D’Amato explained to me in today’s daily visit that the tumor not only has shrunk but had gotten softer as well. And yes, I‘m quite happy about this new as it is all according to plan.
Out of here Friday noon
Due to some juggling of my chemo and other drugs, it turns out that I should be getting out of here around noon on Friday. This is so much better than previously where I was released late Friday evening and as late as Saturday afternoon. This too makes me a happy camper!
Clarification on Shrinkage
Since everyone had so much fun with my shrinkage comments of the other day, I figured I should share that Dr. D’Amato explained to me in today’s daily visit that the tumor not only has shrunk but had gotten softer as well. And yes, I‘m quite happy about this new as it is all according to plan.
Monday, September 15, 2008
Checked in and “ready” for another week of Chemo
Well, I’m all checked into Crawford Long Hospital for round #3, just waiting to get hooked up my chemo (no rush, please). For friends and family that wish to call me, my direct line is 404-686-7137.
About the only thing that has me at all nervous or worried this time is trying to figure out how to survive the hospital food. It’s never really that good and once you start fighting nausea, it is the last thing you want. Just take my word on it.
To help combat the evil hospital food, I was sure to stop at The Varsity just prior to seeing the doctor and getting admitted. The Varsity chili dog is really quite good and their frosted orange drink is loved even by those that say they “hate” the place.
Size does matter
Just a little update on that MRI I had last week. Dr. Monson was indeed correct that the tumor did shrink. According to Dr. D’Amato, it appears to have shrunk by about 10%. She was very impressed! I asked if my quick shrinkage would possibly get me out of rounds #5 and/or #6 and her response was “just the opposite. The tumor shrinking proves that the chemo is working well and guarantees that you’ll be seeing rounds #5 and #6.” Nice try I suppose, but I cannot ignore the chemo.
Strong Echo
As mentioned by the tech the other day, my echocardiogram “looked good”. Exactly how good I didn’t know until today. According to the cardiologist, my ejection fraction measured between 60% and 65%. Since this is well above what it was previously, Dr. D’Amato quipped that the “chemo must be helping it.”
Here’s to a quick and easy round #3!
About the only thing that has me at all nervous or worried this time is trying to figure out how to survive the hospital food. It’s never really that good and once you start fighting nausea, it is the last thing you want. Just take my word on it.
To help combat the evil hospital food, I was sure to stop at The Varsity just prior to seeing the doctor and getting admitted. The Varsity chili dog is really quite good and their frosted orange drink is loved even by those that say they “hate” the place.
Size does matter
Just a little update on that MRI I had last week. Dr. Monson was indeed correct that the tumor did shrink. According to Dr. D’Amato, it appears to have shrunk by about 10%. She was very impressed! I asked if my quick shrinkage would possibly get me out of rounds #5 and/or #6 and her response was “just the opposite. The tumor shrinking proves that the chemo is working well and guarantees that you’ll be seeing rounds #5 and #6.” Nice try I suppose, but I cannot ignore the chemo.
Strong Echo
As mentioned by the tech the other day, my echocardiogram “looked good”. Exactly how good I didn’t know until today. According to the cardiologist, my ejection fraction measured between 60% and 65%. Since this is well above what it was previously, Dr. D’Amato quipped that the “chemo must be helping it.”
Here’s to a quick and easy round #3!
Friday, September 12, 2008
Echo Update
BTW, the tech who did my Echocardiogram yesterday indicated that all looked well according to him. I should receive official confirmation of this on Monday when I meet with Dr. D'Amato prior to checking into the hospital.
Wednesday, September 10, 2008
2-Week Update
Sorry for the silence
My apologies for neglecting this blog. I had intended to update it last week, but that's when things started heading downhill for me and I lost any will/strength to post an update. From Thursday thru Saturday I was feeling pretty puny due to critically low white blood cell counts (absolute neutrophil count in particular). During that entire time my temperatrue remained in the 99 - 99.5 sort of range and I was quite concerned that it would soon cross the 100.5 boarder, which would force me to the ER (as happened during my previous round of chemotheropy). But thankfully my temperature stayed in the "safe" zone and I was doing much better come Sunday morning.
MRI Status
On Tuesday (just yesterday), I had another MRI done on my left thigh and a followup appointment with Dr. Monson. As you may recall, the goal Dr. D'Amato was trying to achieve with these first 2 rounds of chemotheropy was to simply stop the growth of the tumor (shrinkage was not a requirement). You may recall futher that between my initial MRI and the baseline MRI a month later the tumor grew by several centimenters (all dimensions included).
So what was the result with this latest MRI after 2 rounds of chemotheropy? The preliminary results from Dr. Monson indicate that tumor growth has indeed stopped and possibly may have even shrunk slightly. That's great news as it shows the chemo is working! The downside, of course, is that it means yet another two rounds of chemo for me (which really is no fun). But if it can kick the cancer, then it should all be worth it.
Echocardiogram Thursday
As a pre-requisite to my next round of chemo, Dr. D'Amato has ordered another Echocardiogram to verify that my heart is still strong enough to handle the intense chemo she so joyously likes to administer. I'll post the results of that test when I find out (which might be next Monday).
Round #3 starts Monday
Between being sickly the latter half of last week and all of the hospital trips this week combined with the visiting nurse appointments Monday, Wednesday, and Friday, I feel like my time off between chemo this round has just blown by. I better plan on doing something fun this weekend and make the most of the time I have left.
Mullet not to be forgotten
Thanks everyone for your comments and suggestions about the mullet. I do plan to put into action some of the suggestions that were made. But my guess is that's going to be after I get back from this next round of chemo. I'll just be bald or wearing a bandana until then.
My apologies for neglecting this blog. I had intended to update it last week, but that's when things started heading downhill for me and I lost any will/strength to post an update. From Thursday thru Saturday I was feeling pretty puny due to critically low white blood cell counts (absolute neutrophil count in particular). During that entire time my temperatrue remained in the 99 - 99.5 sort of range and I was quite concerned that it would soon cross the 100.5 boarder, which would force me to the ER (as happened during my previous round of chemotheropy). But thankfully my temperature stayed in the "safe" zone and I was doing much better come Sunday morning.
MRI Status
On Tuesday (just yesterday), I had another MRI done on my left thigh and a followup appointment with Dr. Monson. As you may recall, the goal Dr. D'Amato was trying to achieve with these first 2 rounds of chemotheropy was to simply stop the growth of the tumor (shrinkage was not a requirement). You may recall futher that between my initial MRI and the baseline MRI a month later the tumor grew by several centimenters (all dimensions included).
So what was the result with this latest MRI after 2 rounds of chemotheropy? The preliminary results from Dr. Monson indicate that tumor growth has indeed stopped and possibly may have even shrunk slightly. That's great news as it shows the chemo is working! The downside, of course, is that it means yet another two rounds of chemo for me (which really is no fun). But if it can kick the cancer, then it should all be worth it.
Echocardiogram Thursday
As a pre-requisite to my next round of chemo, Dr. D'Amato has ordered another Echocardiogram to verify that my heart is still strong enough to handle the intense chemo she so joyously likes to administer. I'll post the results of that test when I find out (which might be next Monday).
Round #3 starts Monday
Between being sickly the latter half of last week and all of the hospital trips this week combined with the visiting nurse appointments Monday, Wednesday, and Friday, I feel like my time off between chemo this round has just blown by. I better plan on doing something fun this weekend and make the most of the time I have left.
Mullet not to be forgotten
Thanks everyone for your comments and suggestions about the mullet. I do plan to put into action some of the suggestions that were made. But my guess is that's going to be after I get back from this next round of chemo. I'll just be bald or wearing a bandana until then.
Sunday, August 31, 2008
Weekend Update
So far, so good
Though we’re still kind of early into Round #2 of this 3-week cycle, I do seem to be doing fairly well thus far. According to Holly and Barbara, they both think I’m doing and sounding much better this time.
Losing hair quickly now
I ended up shedding so much hair on my pillow at the hospital that I actually called in the resident barber to shave the remaining stubs on my head. And just between us, it was a little scary as the electric clippers she used were so darn loud. I kid you not. In fact at one time I even quipped if she had any ear plugs (since my ears were ringing). But I survived without a nick, which is all I really cared about. I’m actually starting to like the bald look.
Choices . . . always choices
So I’m here at home Saturday morning when low and behold the mailman drops off a package at our door and rings the doorbell. Funny thing, I don’t remember ordering anything. Even more of a surprise, the package is for me! What could it be?!? In eager anticipation, I open the package to find . . . replacement hair. Now how’s that for timing? I just got buzzed on Friday, started coming to terms with my baldness, and now this! But rather than figure out on Saturday exactly when and where to try out my graciously supplied wig, I decided to take a Phenegrin and sleep most of the afternoon. Chuck LeDuc -- I owe you . . . once again!
Sunday Morning -- Neulasta shot
If you recall, the Neulasta shot stimulates the production of white blood cells. But this time, I had this $3600 shot done at the infusion center at Emory Winship Cancer Institute rather than purchasing the shot through the local pharmacy. It turns out that in/out patient co-pays are almost always less than the pharmacy co-pay. That’s something to keep in mind going forward.
The Mullet revealed!
After gaining some strength from the Chinese food I had at lunch, I decided now was as good a time as any to try out the new wig. So I put on a nice shirt and gave it a go. The result? Well, I realize it was the popular pick and all, but I wasn’t so sure that I really pulling it off as obviously others had hoped. I just wasn’t getting that achy breaky feeling when looking in the mirror. Holly’s reaction was equally mixed, though (as usual) more positive than mine. She figured I should walk down to the basement (during the boys “media time”) just to see if they notice. Of course Bryce realized it right away (his comments later), but Kyle spoke with me for about a minute without ever looking up to realize my “new look”. He then screamed!
The family has spoken . . . the people have spoken . . . a compromise revealed
Though Holly is still teetering on whether she likes this new look or not, for the boys this is definitely a no go. In fact, Bryce (in all his wisdom) stated “that kind of makes you look stupid and not handsome. I like you better bald.” And, of course, Kyle’s scream spoke volumes. So what am I left with? I suppose now I can wear this when just Holly and I go out. That should work. Also what works is meeting friends for lunch while wearing the wig. But for the house, I’ll probably have to stick with just being bald. Call it a compromise. BTW -- Thai food sounds good . . . any takers?!? I'll wear the wig . . . but only if you pay! :)
Model looks? Perhaps not.
The distant stare
Though we’re still kind of early into Round #2 of this 3-week cycle, I do seem to be doing fairly well thus far. According to Holly and Barbara, they both think I’m doing and sounding much better this time.
Losing hair quickly now
I ended up shedding so much hair on my pillow at the hospital that I actually called in the resident barber to shave the remaining stubs on my head. And just between us, it was a little scary as the electric clippers she used were so darn loud. I kid you not. In fact at one time I even quipped if she had any ear plugs (since my ears were ringing). But I survived without a nick, which is all I really cared about. I’m actually starting to like the bald look.
Choices . . . always choices
So I’m here at home Saturday morning when low and behold the mailman drops off a package at our door and rings the doorbell. Funny thing, I don’t remember ordering anything. Even more of a surprise, the package is for me! What could it be?!? In eager anticipation, I open the package to find . . . replacement hair. Now how’s that for timing? I just got buzzed on Friday, started coming to terms with my baldness, and now this! But rather than figure out on Saturday exactly when and where to try out my graciously supplied wig, I decided to take a Phenegrin and sleep most of the afternoon. Chuck LeDuc -- I owe you . . . once again!
Sunday Morning -- Neulasta shot
If you recall, the Neulasta shot stimulates the production of white blood cells. But this time, I had this $3600 shot done at the infusion center at Emory Winship Cancer Institute rather than purchasing the shot through the local pharmacy. It turns out that in/out patient co-pays are almost always less than the pharmacy co-pay. That’s something to keep in mind going forward.
The Mullet revealed!
After gaining some strength from the Chinese food I had at lunch, I decided now was as good a time as any to try out the new wig. So I put on a nice shirt and gave it a go. The result? Well, I realize it was the popular pick and all, but I wasn’t so sure that I really pulling it off as obviously others had hoped. I just wasn’t getting that achy breaky feeling when looking in the mirror. Holly’s reaction was equally mixed, though (as usual) more positive than mine. She figured I should walk down to the basement (during the boys “media time”) just to see if they notice. Of course Bryce realized it right away (his comments later), but Kyle spoke with me for about a minute without ever looking up to realize my “new look”. He then screamed!
The family has spoken . . . the people have spoken . . . a compromise revealed
Though Holly is still teetering on whether she likes this new look or not, for the boys this is definitely a no go. In fact, Bryce (in all his wisdom) stated “that kind of makes you look stupid and not handsome. I like you better bald.” And, of course, Kyle’s scream spoke volumes. So what am I left with? I suppose now I can wear this when just Holly and I go out. That should work. Also what works is meeting friends for lunch while wearing the wig. But for the house, I’ll probably have to stick with just being bald. Call it a compromise. BTW -- Thai food sounds good . . . any takers?!? I'll wear the wig . . . but only if you pay! :)
Model looks? Perhaps not.
The distant stareSaturday, August 30, 2008
Round 2 hospital stay is complete
I brought Dave home last night about 10:45 pm. I believe he'll be writing on the blog soon, but I wanted to let you all know that he is home, safe and sound. We're glad he's back home...we all missed him!
Thursday, August 28, 2008
Round #2 going smoothly
Well, so far so good. My nausea is under control and though my appetite has shrunk, I’m still eating some food. Perhaps most importantly, both my Red and White blood cell counts are still in the normal range. I’m also making a point of walking a several laps on my floor a few times a day (thank you sister Barbara) in an effort to stay active and keep my body moving. Even my weight has been fairly stable this time around (the last time I quickly gained 15 lbs in fluids).
About the only real negative at this point is I’m suffering from some mild “chemo brain” again. One of the doctors here was asking for the URL for my blog and I couldn’t even remember it. Thankfully doing a simple Google search for dnovak and Liposarcoma finds my site rather quickly, which I did remember. But all things considered, I really can’t complain about how smoothly things are going with Round #2.
Neutrophil Count a bit on the high side
My latest labs show a Neutrophil count of 84%, which is a bit high but of no real concern. In fact, this is all considered a good thing and hopefully will give me a leg up on keeping my counts up next week when I really need it. As you may recall, critically low Neutrophil counts put me back in the hospital last weekend, which I’d like to avoid this next time if possible!
Getting out earlier than expected
It turns out that with this round of Chemo I’m getting my Mesna with each dosage of Ifosfamide. Therefore, I will not be getting the 24 drip of Mesna after the Ifosfamide finished up (as originally reported). Yeah! This means I get to come home Friday night.
About the only real negative at this point is I’m suffering from some mild “chemo brain” again. One of the doctors here was asking for the URL for my blog and I couldn’t even remember it. Thankfully doing a simple Google search for dnovak and Liposarcoma finds my site rather quickly, which I did remember. But all things considered, I really can’t complain about how smoothly things are going with Round #2.
Neutrophil Count a bit on the high side
My latest labs show a Neutrophil count of 84%, which is a bit high but of no real concern. In fact, this is all considered a good thing and hopefully will give me a leg up on keeping my counts up next week when I really need it. As you may recall, critically low Neutrophil counts put me back in the hospital last weekend, which I’d like to avoid this next time if possible!
Getting out earlier than expected
It turns out that with this round of Chemo I’m getting my Mesna with each dosage of Ifosfamide. Therefore, I will not be getting the 24 drip of Mesna after the Ifosfamide finished up (as originally reported). Yeah! This means I get to come home Friday night.
Monday, August 25, 2008
Chemo -- Round #2
Admitted for Round #2
Well, I’m in the hospital now (just got my room about 2 hours ago), awaiting round #2 of my chemo treatment. Given the rather late start in the day and the required 4 full days of infusion followed by 24 hours of Mesna, it looks as though I probably won’t be getting out of here until later Saturday night. Hopefully they’ll get the chemo going within the next hour or two so that I can in fact come home Saturday night.
Phone Number
For friends and family members who want to contact me during this time, I’ll be in room 7128. The direct phone number to my room is 404-686-7128.
I feel Good!
As stated in my last post, I really feel great at this time. And I was already told my labs this morning were “awesome”.
Goal for Round #2
I meet with Dr. D’Amato this morning (along with two other doctors), who reminded me that the goal of the first two rounds of chemo is not to shrink the tumor but instead to stop the growth of the tumor. That seemed like the appropriate time to ask her about what observed growth they noticed between my original MRI (at the end of June) and the more recent baseline MRI (at the end of July). Turns out that within that relatively short period of time, the tumor indeed grew by a few centimeters in combined length, width, and depth measurements. My next MRI will be September 9. It is hoped that there will be no observed growth between my baseline MRI and this next one.
Finally losing my hair
OK, it’s not like I really was looking forward to this, but we all knew it was coming. My already short hair (from the preemptive strike just over 3 weeks ago) is now coming out in small patches. Oh well, no big loss. And I’m still holding out hope for “thicker, curly hair” after it starts growing back.
Well, I’m in the hospital now (just got my room about 2 hours ago), awaiting round #2 of my chemo treatment. Given the rather late start in the day and the required 4 full days of infusion followed by 24 hours of Mesna, it looks as though I probably won’t be getting out of here until later Saturday night. Hopefully they’ll get the chemo going within the next hour or two so that I can in fact come home Saturday night.
Phone Number
For friends and family members who want to contact me during this time, I’ll be in room 7128. The direct phone number to my room is 404-686-7128.
I feel Good!
As stated in my last post, I really feel great at this time. And I was already told my labs this morning were “awesome”.
Goal for Round #2
I meet with Dr. D’Amato this morning (along with two other doctors), who reminded me that the goal of the first two rounds of chemo is not to shrink the tumor but instead to stop the growth of the tumor. That seemed like the appropriate time to ask her about what observed growth they noticed between my original MRI (at the end of June) and the more recent baseline MRI (at the end of July). Turns out that within that relatively short period of time, the tumor indeed grew by a few centimeters in combined length, width, and depth measurements. My next MRI will be September 9. It is hoped that there will be no observed growth between my baseline MRI and this next one.
Finally losing my hair
OK, it’s not like I really was looking forward to this, but we all knew it was coming. My already short hair (from the preemptive strike just over 3 weeks ago) is now coming out in small patches. Oh well, no big loss. And I’m still holding out hope for “thicker, curly hair” after it starts growing back.
Wednesday, August 20, 2008
No news is good news
My apologies for being so quiet here lately. My only “excuse” is that I’ve been feeling perfectly normal and enjoying my break between chemo treatments. In fact, I’ve been doing so well the past two days that I’ve eaten out a few times already and I’m sure to consume 3 reasonable meals each day. Today I even worked from home for my job. Tomorrow I plan to spend the day in the office.
This is all very therapeutic to me and I’m just happy I feel great and have the strength to do what I like.
This is all very therapeutic to me and I’m just happy I feel great and have the strength to do what I like.
Sunday, August 17, 2008
Dave's home!
Yes, the good doctor said the patient was o.k. to return home. His white cell counts were back up as well as his sodium level. Dave was quite happy to check out of the hospital and return home. He ate Chinese for dinner and is acting like he's going to make it...he had me really scared Friday night, but, as my new mantra keeps resonating in my head...one-day-at-a-time! I'll get on Dave to write more tomorrow...take care!
Update from Dave posted 08/18:
Just to provide a few more technical details to what Holly has already graciously provided, what I had was Neutropenia, which was classified as severe in my case since my absolute neutrophil count (ANC) was 240 (the severe mark is ANC < 500). Since I was also running a fever of over 100.5, some in the hospital referred to what I had as Neutropenic fever.
While in the hospital, the doctors treated me with IV fluids and 4 rounds of an antibiotic called Cefepime (a.k.a., Maxipime). By Saturday night, I was already starting to come around and by Sunday morning I was fine. My blood cultures all turned out negative for bacterial infection. The nurses seemed to think that the Neulasta shot I had back on 08/10 (which stimulates the production of white blood cells) was finally kicking in and helping me.
The doctor made it quite clear to me that this would not delay my next round of chemo treatment. She explained that what I was going through was not uncommon for patients undergoing “intensive chemotherapy” and that she would not alter either the dosages or the timing of my next round (just a week away). With a smile she said, “Think of it as tough love”.
Update from Dave posted 08/18:
Just to provide a few more technical details to what Holly has already graciously provided, what I had was Neutropenia, which was classified as severe in my case since my absolute neutrophil count (ANC) was 240 (the severe mark is ANC < 500). Since I was also running a fever of over 100.5, some in the hospital referred to what I had as Neutropenic fever.
While in the hospital, the doctors treated me with IV fluids and 4 rounds of an antibiotic called Cefepime (a.k.a., Maxipime). By Saturday night, I was already starting to come around and by Sunday morning I was fine. My blood cultures all turned out negative for bacterial infection. The nurses seemed to think that the Neulasta shot I had back on 08/10 (which stimulates the production of white blood cells) was finally kicking in and helping me.
The doctor made it quite clear to me that this would not delay my next round of chemo treatment. She explained that what I was going through was not uncommon for patients undergoing “intensive chemotherapy” and that she would not alter either the dosages or the timing of my next round (just a week away). With a smile she said, “Think of it as tough love”.
The antibiotics are doing the trick
Just a quick note to let you know I spoke with Dave this morning and he is feeling much better...he said he's among the living (better than the alternative which is how he felt yesterday!) He said he had cereal this morning which is probably the most substantive thing he's had in about 3 days or so...whew!
I'll be on my way shortly to see him, he said he's in the mood for a Frosted Orange from the Varsity...yet another good sign! We're not sure about when he'll be discharged, but we'll keep you posted...
I'll be on my way shortly to see him, he said he's in the mood for a Frosted Orange from the Varsity...yet another good sign! We're not sure about when he'll be discharged, but we'll keep you posted...
Saturday, August 16, 2008
Back to Crawford Long we go...
Yes, Dave is back in the hospital. He was really, really tired and not hungry at all the past few days. Last night (Friday), he started running a fever. This time it went over 100 and then when we spoke with the on-call doctor, it was up to 101.4. She advised us to go to the ER immediately so they could draw blood, do a chest xray, etc. So, at 12:30 am, I drove Dave down to Crawford Long's ER.
Ugh...that's all I can say. They got Dave in at about 1:45 AM or so to draw labs...seems like it took forever to get the results. Finally, around 7:30 AM, they told us his white cells were very low (which is very typical after chemo) which makes him more susceptible to infection.
He was admitted and is in room 7135..(404) 686-7135. He's receiving IV Antibiotics and they'll keep him in the hospital until his white cell count gets to a safer level and the doctor feels he is ready to return home. I saw Dr. D'Amato there at the hospital (fortunately she is on this weekend so she'll be overseeing Dave's case)..and she said that there's a chance he'll be back in on Aug. 25th for his next round of chemo. We'll keep you posted about that.
All I can say is please pray for Dave right now, that he'll feel better soon, he was really, really feeling yucky (for no better terms) these past few days.
Thanks again for being there, we appreciate you all very much!
Ugh...that's all I can say. They got Dave in at about 1:45 AM or so to draw labs...seems like it took forever to get the results. Finally, around 7:30 AM, they told us his white cells were very low (which is very typical after chemo) which makes him more susceptible to infection.
He was admitted and is in room 7135..(404) 686-7135. He's receiving IV Antibiotics and they'll keep him in the hospital until his white cell count gets to a safer level and the doctor feels he is ready to return home. I saw Dr. D'Amato there at the hospital (fortunately she is on this weekend so she'll be overseeing Dave's case)..and she said that there's a chance he'll be back in on Aug. 25th for his next round of chemo. We'll keep you posted about that.
All I can say is please pray for Dave right now, that he'll feel better soon, he was really, really feeling yucky (for no better terms) these past few days.
Thanks again for being there, we appreciate you all very much!
Thursday, August 14, 2008
Update on our patient
It's Holly again, Dave's pretty tired so I thought I'd take a minute to update everyone. Well, first of all, it's been nice having Dave home. Someone told us that every day is different and man were they right. Dave has had a few "normal" moments where it doesn't seem like he's been sick, but those are very few. Mainly though, he's just really, really tired. He's keeping his nausea at bay with a combination of anti-nausea meds that seem to work well for him.
He's noticed though that he is not quite as sharp as he usually is and that is bothersome to him. He's more forgetful, loses his train of thought, can't remember what he was about to do...I tell him he's sounding more like me everyday! :-) We certainly hope this is a result of the chemo and will subside when he's done with the treatments.
Last night, he had a low (99.9) grade fever that was starting to concern us. One of the things the doctor warned us about was not to let his temperature rise over 100.5 without calling in. If his temp did continue to go up, we would have had to get him into the hospital to run an IV antibiotic. Fortunately, it didn't go over 100 and all is good this morning. He's resting, which right now is the best thing for him.
So, that's all for now. I'm sure Dave will blog more when he's able and if there's anything new to share. Right now, it's rest, renew, revive!
He's noticed though that he is not quite as sharp as he usually is and that is bothersome to him. He's more forgetful, loses his train of thought, can't remember what he was about to do...I tell him he's sounding more like me everyday! :-) We certainly hope this is a result of the chemo and will subside when he's done with the treatments.
Last night, he had a low (99.9) grade fever that was starting to concern us. One of the things the doctor warned us about was not to let his temperature rise over 100.5 without calling in. If his temp did continue to go up, we would have had to get him into the hospital to run an IV antibiotic. Fortunately, it didn't go over 100 and all is good this morning. He's resting, which right now is the best thing for him.
So, that's all for now. I'm sure Dave will blog more when he's able and if there's anything new to share. Right now, it's rest, renew, revive!
Tuesday, August 12, 2008
Back Online
Just a quick update to let everyone know that I am OK and I plan to continue with updates to this blog. Here’s what’s been going on lately:
Round #1 Complete
Round #1 (of either 6 or 8 total rounds) is now complete. As you know, I got back from the hospital Sunday afternoon. I’m now in my “2 week break” period, where my body is given the chance to recover from the chemo. Round #2 will begin Monday, August 25th.
Every day since then has been different from the next. I have days where I battle nausea and fatigue, yet other days (like yesterday afternoon) where I’m almost feeling normal. I think Holly put it best the other day when she told me “You act like a pregnant woman: you’re either nauseous or have food cravings!”
All chemo and no food makes Dave a dull boy
Chemo is no fun - period! And when they said “intensive chemotherapy”, they definitely meant it. The fatigue and cognitive impairment I can cope with, but loss of appetite and nausea (the latter being far worse) is really difficult to deal with.
Thankfully, since I’ve been home, my nausea has been largely under control and I’ve had (and more importantly wanted) a few good meals since then. It’s good to be home.
And though I again crave Varsity chili dogs (with mustards and onions) and their frosted orange drink (but no longer the greasy Varsity onion rings), I think I make it another 2 weeks without those. :)
Home Health Care
One other thing worth mentioning – the good doctor ordered up some home health care for me over the next two weeks. Since my insurance covers it, this option makes for a low cost, convenient way of doing blood draws and administering IV fluids. It sure beats having to drive downtown for this in any case!
Thank you everyone!
Just another “thank you!” to everyone for their ongoing support and words of encouragement. It means so very much to me and my family.
Round #1 Complete
Round #1 (of either 6 or 8 total rounds) is now complete. As you know, I got back from the hospital Sunday afternoon. I’m now in my “2 week break” period, where my body is given the chance to recover from the chemo. Round #2 will begin Monday, August 25th.
Every day since then has been different from the next. I have days where I battle nausea and fatigue, yet other days (like yesterday afternoon) where I’m almost feeling normal. I think Holly put it best the other day when she told me “You act like a pregnant woman: you’re either nauseous or have food cravings!”
All chemo and no food makes Dave a dull boy
Chemo is no fun - period! And when they said “intensive chemotherapy”, they definitely meant it. The fatigue and cognitive impairment I can cope with, but loss of appetite and nausea (the latter being far worse) is really difficult to deal with.
Thankfully, since I’ve been home, my nausea has been largely under control and I’ve had (and more importantly wanted) a few good meals since then. It’s good to be home.
And though I again crave Varsity chili dogs (with mustards and onions) and their frosted orange drink (but no longer the greasy Varsity onion rings), I think I make it another 2 weeks without those. :)
Home Health Care
One other thing worth mentioning – the good doctor ordered up some home health care for me over the next two weeks. Since my insurance covers it, this option makes for a low cost, convenient way of doing blood draws and administering IV fluids. It sure beats having to drive downtown for this in any case!
Thank you everyone!
Just another “thank you!” to everyone for their ongoing support and words of encouragement. It means so very much to me and my family.
Saturday, August 9, 2008
Dave is coming home tomorrow! (Sunday, 8/10/08)
Hey there, this is Holly. Yes, it's my first time blogging, but since Dave isn't really up to doing this right now, I have permission to do an update and have been instructed by Dave that I need to!
So, since you last heard from Dave, we've noticed that he has definitely become more tired, has had moderate nausea and is hanging in there like a champ. He finished up his chemo early this morning (Saturday) and has been receiving his last infusion of Mesna for a total of 24 hours. His appetite has definitely gone away (can you believe it?)...kind of an oxymoron with the Dave we know, but that's o.k. 'Whatever it takes' is my motto these days...He did manage to drink a Frosted Orange from the Varsity...but he didn't want a chili dog this time...for the best I say!
Dave's parents have been in town since Wednesday (staying with his sister, Deborah, in Cumming)...his sister, Diane was with me and the kids through Thursday. I loved having her here, the boys adored her. It was nice spending time with her and Dave enjoyed her being in town also.
Dave's youngest sister, Barbara (the oncology nurse from Knoxville), arrived in town this morning. She and I went to spend the day with Dave...he was pretty tired when we got there, so after a short visit, we left so he could get a good nap. When we got back though he wasn't resting on his laurels....nope, Nurse Barbara made sure he got up and went for a nice walk around the 7th floor...5 laps...he made it though and he seemed to perk up a bit. He got cleaned up, went for another short walk and then was ready to hit the hay. He looked much better when we left then when we arrived so we felt like we accomplished something good today!
The house is clean and we're ready to pick up the patient in the morning. Dave will be receiving Home Health Nurse visits 3 times each week (for the next 2 weeks) and then he should be going in for round #2 on or around August 25th.
Thank you for all of your support, encouragement, prayers and positive uplifting thoughts and comments during this journey in our lives. Without our family, friends and neighbors, it wouldn't be bearable. (I had to get my 2 cents in finally!) :-)
More later!
Holly
So, since you last heard from Dave, we've noticed that he has definitely become more tired, has had moderate nausea and is hanging in there like a champ. He finished up his chemo early this morning (Saturday) and has been receiving his last infusion of Mesna for a total of 24 hours. His appetite has definitely gone away (can you believe it?)...kind of an oxymoron with the Dave we know, but that's o.k. 'Whatever it takes' is my motto these days...He did manage to drink a Frosted Orange from the Varsity...but he didn't want a chili dog this time...for the best I say!
Dave's parents have been in town since Wednesday (staying with his sister, Deborah, in Cumming)...his sister, Diane was with me and the kids through Thursday. I loved having her here, the boys adored her. It was nice spending time with her and Dave enjoyed her being in town also.
Dave's youngest sister, Barbara (the oncology nurse from Knoxville), arrived in town this morning. She and I went to spend the day with Dave...he was pretty tired when we got there, so after a short visit, we left so he could get a good nap. When we got back though he wasn't resting on his laurels....nope, Nurse Barbara made sure he got up and went for a nice walk around the 7th floor...5 laps...he made it though and he seemed to perk up a bit. He got cleaned up, went for another short walk and then was ready to hit the hay. He looked much better when we left then when we arrived so we felt like we accomplished something good today!
The house is clean and we're ready to pick up the patient in the morning. Dave will be receiving Home Health Nurse visits 3 times each week (for the next 2 weeks) and then he should be going in for round #2 on or around August 25th.
Thank you for all of your support, encouragement, prayers and positive uplifting thoughts and comments during this journey in our lives. Without our family, friends and neighbors, it wouldn't be bearable. (I had to get my 2 cents in finally!) :-)
More later!
Holly
Wednesday, August 6, 2008
Doing OK, though tired today
This has been a rather tiresome day for me with lots of little interruptions, which explains why this will be my only post for the day. I’ve also been fighting hiccups on and off most of the day, for which the nurses have given me Thorazine. The good news is that my nausea seems to be pretty much under control and I’m eating pretty much anything that I wish to eat. And you know me, I’ll take tired + food over nausea any day!Holly came by this morning, followed by my sisters Diane and Deborah and my Mom and Dad. They came about 15 minutes after my lunch was delivered. Even so, that didn’t stop me from asking them to grab 2 chili dogs with mustard and onions plus a frosted orange drink from The Varsity (just a few blocks from the hospital). Those hit the spot!
That’s all for today. Perhaps I’ll post another update tomorrow.
Tuesday, August 5, 2008
Busy, busy, day (with family, friends, and new chemo)
Visitors from Outer Hospital
Had a number of visitors today, starting with brother-in-law Captain Dan Jagoe, who today was dressed in full uniform. Then, just after noon, Holly and the boys came down with my sister Diane (from Lexington, KY). Diane is helping out quite a bit around the house this week while I’m away. Then my friend and colleague Lynn Akers dropped by and paid me a visit, leaving just as Dr. D'Amato showed up this evening making her rounds.
Here are a few pictures (with apologies in advance for camera shake [the camera man in the family is laid up at this time]):
Kyle, me, Bryce
Me and Holly
Me, my sister Diane
Me, my sister Diane
Hooked up with the “red juice”
Well, I am now officially running with both types of chemo: the red one called Doxorubicin (a.k.a., Adriamycin) and the one I was on yesterday Ifosfamide. This is definitely going to make for a challenging night I suspect. At the first sign of any nausea, I’m calling my nurse and asking for Ativan, which she said she can give me every 6 hours as necessary. But I really hope I won’t need it and that I can look forward to a nice breakfast in the morning.
If I ever get out of here . . . if I ever get out of here
Given that it’s Tuesday (day 2) and I have 3 more full days of chemo planned (call them day 2, 3, and 4 as Monday was day 1), I’ll be getting chemo through Friday evening. As to when I get out, that part is more complicated. And as I was told by my nurse this evening that I have 24 hours of Mesna (not to be confused with that smart people’s group Mensa) following the chemo (call that day 5, ending Saturday evening). Theoretically, I’ll be leaving the hospital later that night. But then I have to come back the next day for some special shot (forget the name) to help boost my immune levels. Wow, that’s pretty much a full week then. This cycle will repeat every 3 weeks for 6 cycles preceding my surgery (so I’ll be back in the hospital next on August 25 for my next cycle).
Had a number of visitors today, starting with brother-in-law Captain Dan Jagoe, who today was dressed in full uniform. Then, just after noon, Holly and the boys came down with my sister Diane (from Lexington, KY). Diane is helping out quite a bit around the house this week while I’m away. Then my friend and colleague Lynn Akers dropped by and paid me a visit, leaving just as Dr. D'Amato showed up this evening making her rounds.
Here are a few pictures (with apologies in advance for camera shake [the camera man in the family is laid up at this time]):
Kyle, me, Bryce
Me and Holly
Me, my sister Diane
Me, my sister DianeHooked up with the “red juice”
Well, I am now officially running with both types of chemo: the red one called Doxorubicin (a.k.a., Adriamycin) and the one I was on yesterday Ifosfamide. This is definitely going to make for a challenging night I suspect. At the first sign of any nausea, I’m calling my nurse and asking for Ativan, which she said she can give me every 6 hours as necessary. But I really hope I won’t need it and that I can look forward to a nice breakfast in the morning.
If I ever get out of here . . . if I ever get out of here
Given that it’s Tuesday (day 2) and I have 3 more full days of chemo planned (call them day 2, 3, and 4 as Monday was day 1), I’ll be getting chemo through Friday evening. As to when I get out, that part is more complicated. And as I was told by my nurse this evening that I have 24 hours of Mesna (not to be confused with that smart people’s group Mensa) following the chemo (call that day 5, ending Saturday evening). Theoretically, I’ll be leaving the hospital later that night. But then I have to come back the next day for some special shot (forget the name) to help boost my immune levels. Wow, that’s pretty much a full week then. This cycle will repeat every 3 weeks for 6 cycles preceding my surgery (so I’ll be back in the hospital next on August 25 for my next cycle).
Electrocardiogram results were normal -- Yeah!
Good news -- my nurse has just informed me that the results of my Electrocardiogram test came back "normal". Therefore, Dr. D'Amato will be updating my orders to now include Doxorubicin (a.k.a. Adriamycin) and stop giving me the extra Ifosfamide. This is good in that it's thought that the combination of these two drugs gives is my best hope for a full recovery.
But I have been forewarned that the Doxorubicin (a.k.a. Adriamycin) is much stronger than the Ifosfamide. According to one guy I met yesterday who's on both drugs, "the red one [Adriamycin] gives me strange thoughts and hallucinogenic images." Well, that may not be all bad, depending upon what the hallucinogenic images are. :)
I’ll keep you updated once that gets going. My ETA is another 4 hours.
But I have been forewarned that the Doxorubicin (a.k.a. Adriamycin) is much stronger than the Ifosfamide. According to one guy I met yesterday who's on both drugs, "the red one [Adriamycin] gives me strange thoughts and hallucinogenic images." Well, that may not be all bad, depending upon what the hallucinogenic images are. :)
I’ll keep you updated once that gets going. My ETA is another 4 hours.
New poll of sorts. Let your voice be heard!
You may have missed this comment from an older post, but my friend and former colleague Chuck posted a comment back on my R.I.P. Hair post pertaining to future hair styles I should try. Here’s his post with links to the poll:
Thanks for your participation!
Okay, Dave, in the interest of keeping you focused on your recovery, I've charged myself with helping you select your next hairstyle. Check out the options I'm proposing; I've also started a poll. Let me know if there are any particular hairstyles you'd like me to prototype.So just be sure to click on started a poll to actually cast your vote. Missing from the poll is the option to stick with the “doo rag” head look. I’ve been told it’s a good look for me and it keeps me cooler than that old fur coat I was wearing on my head. Just vote for the option you like best!
Thanks for your participation!
I survived my first night with chemo . . . and am ready for breakfast
Wisdom from a child
My older boy Bryce (9 1/2) called me last night and offered up these rather profound words of wisdom just hours before the chemo started:
He is a very sweet boy with a kind and caring heart (except possibly if the subject matter is his younger brother). But seriously, he’s really torn up about this thing and just wants me to be OK.
I survived!
Well, I survived my first night with chemo . . . and now am ready for breakfast. (I’m especially happy about latter part of that statement. I guess the anti-nausea drugs are doing their job!) Hang on – ask and you shall receive: breakfast has just arrived. Mmmmm . . . just what I ordered: scrambled eggs, bacon, grits, biscuit, tea, and juice! I’m eating it now and it tastes just fine.
Electrocardiogram
Nurse Ganette came by early this morning with a portable Electrocardiogram unit. Think of this as ultrasound for the heart. Dr. D’Amato ordered this test yesterday due to my low ejection fraction measurement (0.45). If this machine measures me at 0.55 or greater (making the average 0.50 or greater), I will be put on Doxorubicin (a.k.a. Adriamycin). Otherwise, they may continue looking further at my heart to get the answers they are looking for. I expect results for the Electrocardiogram later today and will post an update when I find out.
Chemo therapy update
As to my chemo therapy, I apparently misspoke earlier about dosages and timeframes. Last night I received Ifosfamide at a rate of 595 mL / hour for 2 hours (the extra dose Dr. D’Amato promised since I’m not taking Adriamycin). Yes, that’s like an entire bag in 2 hours. That was followed by another bag of Ifosfamide flowing at a rate of 59 mL/hour for the next 24 hours. That means I’ll be getting that 2nd bag replaced just after midnight tonight. And depending upon the results of my Electrocardiogram, I’ll be either starting Doxorubicin (a.k.a. Adriamycin) or getting yet another extra dose of Ifosfamide.
How you doing?
So how do I feel? Not too bad. Different, though for sure. I feel light-headed, tired, and have a slight ringing in my left ear (some of which at least could be due to the very poor night of sleep I got rather than the chemo). The biggest thing though is I’m not noticing any nausea, which was my biggest fear. And anybody who knows me knows that I do, in fact, enjoy a good meal. :) So I hope the anti-nausea drugs keep doing their thing!
My older boy Bryce (9 1/2) called me last night and offered up these rather profound words of wisdom just hours before the chemo started:
I’ve been brave for you many times dad, now it’s your time to be brave for me.
He is a very sweet boy with a kind and caring heart (except possibly if the subject matter is his younger brother). But seriously, he’s really torn up about this thing and just wants me to be OK.
I survived!
Well, I survived my first night with chemo . . . and now am ready for breakfast. (I’m especially happy about latter part of that statement. I guess the anti-nausea drugs are doing their job!) Hang on – ask and you shall receive: breakfast has just arrived. Mmmmm . . . just what I ordered: scrambled eggs, bacon, grits, biscuit, tea, and juice! I’m eating it now and it tastes just fine.
Electrocardiogram
Nurse Ganette came by early this morning with a portable Electrocardiogram unit. Think of this as ultrasound for the heart. Dr. D’Amato ordered this test yesterday due to my low ejection fraction measurement (0.45). If this machine measures me at 0.55 or greater (making the average 0.50 or greater), I will be put on Doxorubicin (a.k.a. Adriamycin). Otherwise, they may continue looking further at my heart to get the answers they are looking for. I expect results for the Electrocardiogram later today and will post an update when I find out.
Chemo therapy update
As to my chemo therapy, I apparently misspoke earlier about dosages and timeframes. Last night I received Ifosfamide at a rate of 595 mL / hour for 2 hours (the extra dose Dr. D’Amato promised since I’m not taking Adriamycin). Yes, that’s like an entire bag in 2 hours. That was followed by another bag of Ifosfamide flowing at a rate of 59 mL/hour for the next 24 hours. That means I’ll be getting that 2nd bag replaced just after midnight tonight. And depending upon the results of my Electrocardiogram, I’ll be either starting Doxorubicin (a.k.a. Adriamycin) or getting yet another extra dose of Ifosfamide.
How you doing?
So how do I feel? Not too bad. Different, though for sure. I feel light-headed, tired, and have a slight ringing in my left ear (some of which at least could be due to the very poor night of sleep I got rather than the chemo). The biggest thing though is I’m not noticing any nausea, which was my biggest fear. And anybody who knows me knows that I do, in fact, enjoy a good meal. :) So I hope the anti-nausea drugs keep doing their thing!
Monday, August 4, 2008
Countdown to Chemo
Well, about an hour ago (about 5:15 PM EST), the nurse started a hydration IV in preparation for the upcoming chemo. This IV will last 4 hours, and then it’s Chemo time! So, assuming they stay on schedule, my first of four 12-hour infusions will begin tonight around 9:15 PM EST.
I’m on my third hospital meal here too (one while getting admitted [lunch], one [unexpected] right after getting settled in my room [late lunch], and then a somewhat early dinner cam about an hour ago), so I’m really hoping that I’m not going to feel any nausea! I’ll have to forewarn the nurse about my weak stomach before she lets that get going too far.
Wish me luck folks – I will need it!
I’m on my third hospital meal here too (one while getting admitted [lunch], one [unexpected] right after getting settled in my room [late lunch], and then a somewhat early dinner cam about an hour ago), so I’m really hoping that I’m not going to feel any nausea! I’ll have to forewarn the nurse about my weak stomach before she lets that get going too far.
Wish me luck folks – I will need it!
My "Vacation" has started; my Chemo has not (yet)
Hi everyone! Well, I have been admitted today as expected and should get going on my chemo treatment shortly. In the meantime, I’m finally set up here in room 7120 at Crawford Long Hospital. With Holly now headed back home and the kids away all day, this feels like a vacation . . . or at least a business trip. Though don’t be surprised if I change my tune in a little bit after the chemo starts flowing.Now to update you on some previous tests. The area noted near my right axilla was indeed confirmed to be yet another Lipoma (I have 5 of those now). The more interesting result was my MUGA scan, which indicated that my heart does not appear to be strong enough to handle the chemo known as Doxorubicin (a.k.a. Adriamycin). The scan computed my ejection fraction at 0.45 and it needs to be 0.50 or greater to undergo that more powerful chemo drug. So, as a contingency, I’m going to be getting a stronger dosage of Ifosfamide instead. Furthermore, Dr. D’Amato ordered a cardiology consult to do further tests on my heart. If those tests are normal, I may be put back on Doxorubicin.
Given that the Ifosfamide is served up in 12-hour doses for 4 days, it would seem as though I won’t be getting out of here until Friday morning. If you wanted to call me, I do have a direct line: 404-686-7120. If I don’t answer, it’s either because I’m not in my room or not feeling up to taking a call.
It’s really nice that they have free wireless here at the hospital. And of course I’ve packed my laptop and have my iPhone. So much has changed in the 8 years since I’ve last seen the inside of a hospital!
Sunday, August 3, 2008
R.I.P. Hair
The death sentence for my hair was carried out yesterday at approximately 1:35 PM EST. As expected, there was no last minute call from either the Doctor or the Governor to offer a stay of execution or even leniency (such as just a trim). No mourners were present, though an unnamed female member of the family expressed joy that the gradual shedding she's had to vacuum up the past 10 years had finally come to an end. The hair was then buried unceremoniously along with the rest of the clippings for the day.
The end result? Well, perhaps I don’t look quite as handsome as either Michael or Buddy, but it’s better than I had feared. Check out these pictures:
Wayne (my barber of 20 years) played the role of executioner. This picture was taken just minutes before the behairing. :)
Wayne and me (bald head intentionally covered up)
OK -- here's the picture you've really been wanting to see: my totally exposed, bare head.
Better, stronger, curly?
It is perhaps worth a mention that Wayne has confirmed that chemo has indeed improved the hair of several of his clients, making it thicker and a bit wavy. I just hope it works out that way for me too! Having better hair just might make the chemo worthwhile (though this is the voice of inexperience speaking).
Chemo on Monday?
Though I am scheduled to come see the Doctor tomorrow morning to go over the results of my Labs and MRIs, concluding with my “official” orders for hospitalization and chemo, I cannot say for certain that I will be starting my chemo on Monday. It could be Tuesday or Wednesday. But I’ll come packed and prepared to stay and be ready for whatever the Doctor orders.
The end result? Well, perhaps I don’t look quite as handsome as either Michael or Buddy, but it’s better than I had feared. Check out these pictures:
Wayne (my barber of 20 years) played the role of executioner. This picture was taken just minutes before the behairing. :)
Wayne and me (bald head intentionally covered up)
That's me trying to look happy about my sudden full baldness. Had to use "doo rag" coverup today in public.
OK -- here's the picture you've really been wanting to see: my totally exposed, bare head.
Better, stronger, curly?
It is perhaps worth a mention that Wayne has confirmed that chemo has indeed improved the hair of several of his clients, making it thicker and a bit wavy. I just hope it works out that way for me too! Having better hair just might make the chemo worthwhile (though this is the voice of inexperience speaking).
Chemo on Monday?
Though I am scheduled to come see the Doctor tomorrow morning to go over the results of my Labs and MRIs, concluding with my “official” orders for hospitalization and chemo, I cannot say for certain that I will be starting my chemo on Monday. It could be Tuesday or Wednesday. But I’ll come packed and prepared to stay and be ready for whatever the Doctor orders.
Friday, August 1, 2008
Hey – What’s happening?!?
No news is good news?
Well, I had 2 MRIs yesterday, one on my right axilla and another on my left thigh (the latter will serve as a baseline for my upcoming chemo treatments). As these were full MRIs with contrast, the two took over 2 1/2 hours to complete, which is a long time to be told “don’t move”. The right axilla was identified as a potential point of interest in my CT scan two weeks ago and the MRI is intended to rule out any metastasis. Though something is definitely visible in the scans, Dr. D’Amato last week seemed to think that it was likely just another Lipoma. But we won’t know for sure until Monday when I get the Radiology report.
Make it a Double!
This morning I went in for my port placement, which went well though is a little sore. The surgery itself took about 1 1/2 hours with more than an hour of prep time and blood work prior to the operation. It was certainly a bigger deal that I had expected. The port itself will definitely take some getting used to. This particular port device is a double port (similar to the one circled on the left), which is required in order to feed two different types of Chemotherapy drugs (as they cannot be mixed). The double port is located on my right chest with catheter extending up to my neck. The surgery was performed by Dr. Best (what a name) and a resident Dr., both of whom were great.
Well, I had 2 MRIs yesterday, one on my right axilla and another on my left thigh (the latter will serve as a baseline for my upcoming chemo treatments). As these were full MRIs with contrast, the two took over 2 1/2 hours to complete, which is a long time to be told “don’t move”. The right axilla was identified as a potential point of interest in my CT scan two weeks ago and the MRI is intended to rule out any metastasis. Though something is definitely visible in the scans, Dr. D’Amato last week seemed to think that it was likely just another Lipoma. But we won’t know for sure until Monday when I get the Radiology report.
Make it a Double!
This morning I went in for my port placement, which went well though is a little sore. The surgery itself took about 1 1/2 hours with more than an hour of prep time and blood work prior to the operation. It was certainly a bigger deal that I had expected. The port itself will definitely take some getting used to. This particular port device is a double port (similar to the one circled on the left), which is required in order to feed two different types of Chemotherapy drugs (as they cannot be mixed). The double port is located on my right chest with catheter extending up to my neck. The surgery was performed by Dr. Best (what a name) and a resident Dr., both of whom were great.I also had a MUGA scan this afternoon. Quite ironically, they are not able to use the new port system as the particular medicines they inject “must go directly into a vein”. Therefore, I had to get stuck another two times for this procedure (ouch). Believe me, I’ve had enough needles to last me a while now.
Make me look like pastor Buddy
Tomorrow I go in for my big haircut, followed by a day of rest on Sunday, followed by industrial strength chemo starting on Monday.
Thank you so much for your continued words of encouragement and support. It means so much to me and my family.
Tuesday, July 29, 2008
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. :)
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. :)
Monday, July 28, 2008
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. :)
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, DeborahOn 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, BarbaraFriday, July 25, 2008
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!
Thursday, July 24, 2008
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. :)
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. :)
Monday, July 21, 2008
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.
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.
Sunday, July 20, 2008
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.
Saturday, July 19, 2008
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.
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.
Friday, July 18, 2008
"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.
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. :)
Friends and esteemed colleagues in Costa Rica: I promise, after I beat this thing, I’ll be back. :)
Thursday, July 17, 2008
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).
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.
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:
Subscribe to:
Posts (Atom)
