Planning comes first

I learned today in my all-day doctor’s appointments that:

1. Doctors make you wait one heck of a long time to be seen by them, and
2. Radiation treatment requires a lot of upfront planning

Due to the upcoming holidays, the detailed planning for my treatment will not begin until the end of this month (Tuesday, December 30 to be exact). Regular treatments will being sometime the following week and continue for the next 5 weeks.

Here’s a detailed breakdown of the entire process for those in my family who just “have to know”:

CT Simulation
The first phase in the planning process is CT Simulation (12/30/2008). During this time, I will lie on a table and the area to be treated will be reviewed through a CT scan device. The purpose of the scan is to pinpoint the exact location of the treatment area. Temporary marks are then placed on my leg at this time and will remain until plan verification simulation the following week. Using the data collected during CT simulation, the doctor is able to finalize and calculate the treatments.

Plan Verification Simulation
The next phase in the planning process is Plan Verification Simulation (01/05/2009). During this phase, the therapist will use the treatment plan and shift from the marks placed on the skin previously to the final centering points that have been determined by the treatment plan. X-rays will then be taken and reviewed by the physician for localization of the treatment fields. Finally, new marks will be painted on my skin and these will need to remain in place during the full course of my treatments (5 weeks). My first treatment appointment is expected to be this same week.

Dr. D’Amato Follow-Up
In my follow-up appointment with Dr. D’Amato today, I was told that I would need to get CT scans of my chest, abdomen, and pelvis (CAP) every 3 months and MRIs of my leg every 6 months, both for the next 2 years. Though this is not really a surprise, that’s one tough regime, especially given that these are the “with contrast” CT scans involving my favorite barium sulfate “smoothie” drinks. Oh well, it’s still better than chemo!

Picture Perfect

Well, I had a CT Scan of my chest and an MRI of my left thigh early this afternoon and I'm happy to report that both apparently look great. Dr. David Monson (my orthopedic oncologist) said that he could find no abnormalities in the chest scan and that the MRI showed continued shrinkage of the tumor. This is really great news as it shows that the chemo did its job. And did I mention today that I'm really glad to be done with chemo?!?

I also took the opportunity to ask Dr. Monson about my upcoming surgery (which should happen sometime mid-February, after radiation). He is very optimistic as to how that should go given that my tumor is near the surface, has shrunk considerably, and contains no major blood vessels. He also thinks I should have minimal muscle loss as a result of the surgery. Apparently my case is "easy" compared to many of his other patients. What a relief!

Tomorrow morning I have a follow-up with Dr. Gina D’Amato (my oncologist) as well as my first appointment with the radiation oncologist, Dr. Karen Godette. Apparently I have 5 weeks of radiation coming, but I'm just not sure when that's going to start given the holiday schedule.

I'll make another update tomorrow after I have more details on the treatment plan.

Looks like I’m going to avoid the hospital this round . . .

Great news! I believe that my body is now producing new white blood cells and that I’m finally on the upswing for Round #6. And just in the nick of time too, as my white count was very low Wednesday morning.

So how do I know I’m producing new white blood cells? For me, the signal is night sweats. (Yes, I know we’ve had a bit of a warm spell here in Atlanta, but that’s not it I assure you.) I noticed several months ago that I experience night sweats about 1 week out from having chemo and it lasts for about a week. This is the exact timeframe when new white blood cells would be produced. In fact, after Round #4 when I was hospitalized with critically low white counts, I knew I was going to be OK when on my second night I experienced night sweats. That morning, blood tests confirmed that my white count had jumped significantly overnight.

The doctors too have validated my theory, stating that “everyone’s body signals them in a different way. For you it is night sweats; for someone else it could be something completely different.”

I mention this mainly for the benefit of other cancer patients: learn and know your body’s signals. For me, it’s really encouraging to know that I’m on the mend without having to wait for the doctor to tell me that.

Doing great . . . so far

I feel great!
Perhaps it’s because Dr. Gina D’Amato went easier on me this time than last, but I’ve been doing great since I got home on Thursday. And, thanks to the Emend (the best anti-nausea drug I’ve tried), I’ve been eating at practically my normal pre-chemo intake rate (read as hungry man). It’s really nice to feel good for once. Holly thinks this is the best I’ve ever been coming out of a chemo cycle.

"Bad" week ahead
But before I get too excited, I need to remind myself that my hard week is approaching. My levels have been dropping since I got out of the hospital and will continue to drop. I expect to bottom-out sometime between Tuesday and Thursday of this week. It’s only a question as to how low that bottom is and whether or not it will send me back into the hospital. I certainly do not want to go and have already said my goodbyes to the nurses on the cancer floor. I just don’t think I could handle hearing anyone say “patient dining” at this point.

That's a lot of chemo!
To give you an idea of just how much chemo I get (and had gotten), Round #6 consisted of exactly half the amount I received during Rounds 1 – 4 (for both the Doxorubicin and the Ifosfamide). Even so, the good doctor tells me that I am still receiving “ample” amounts of chemo. She went on to say that this “half dose” is greater than the max doses many doctors give their cancer patients. Oh really?!? Well, than thanks for going “easy” on me doc! I’m just glad the chemo part is over (hopefully forever).

Getting out of here Thursday Morning

Well, my chemo didn’t get hooked up until after 10:00pm on Monday, so I won’t be finished here until after 10:00 Wednesday. Therefore, I’m just going to end up spending an extra night here and get picked up Thursday morning. No biggie.

Last night I was hooked up with what I hope will be my last bags of chemo. To commemorate the occasion, I took the following picture from my iPhone:

Final bags of "poison" loaded up and flowing (click to enlarge)


I really do hope that all goes well with my CT scan (scheduled for the 16th) and that I am truly done with the chemo. It’s pretty darn rough going through intensive chemotherapy and I will be happier than you can imagine having this behind me. What’s next then? Radiation, Surgery (all TBA), and supposedly hair re-growth. I just can't wait to have this all behind me so that I can move on with my life, my family, and my job.

Round #6 ("Final Round") Starts Now

Well, I'm back in Crawford Long waiting to be hooked up with my "final round" of chemo. For those visiting or calling, I'm in room 7123, which can be called direct at 404-686-7123.

When I saw Dr. Gina D’Amato earlier today, I begged her to go easier on me this time (given that I again had complications after Round #5). Much to my surprise, she complied and ended up taking off another day from this round. She said that I should count my many blessings and credited her goodwill to "the festive spirit of the Holidays".

In any case, I should be getting out of here either late Wednesday or early Thursday morning (all depending upon when the chemo starts flowing). I’m just happy to be cut some slack once again and that I can get home a bit earlier. I can only hope that this all translates to fewer problems the following week.

And now for the biggest challenge of each and every inpatient chemo round: surviving the hospital food. And I just heard the two scariest words spoken on this floor: “patient dining”. Time to call the nurse and get started on my anti-nausea drugs.

Giving Thanks

This isn't the "typical" blog about Dave's cancer, but I needed to put this out there with Thanksgiving being a week away...Holly

What I'm Thankful For
I have a hard time expressing myself in words sometimes, but I really want to convey to you what I'm thankful for.
As I continue through this journey with Dave of his battle against cancer, I've come to realize how people truly care. Sometimes I get so down thinking that our world is crumbling around us, but, each and every day I'm reminded that there are so many genuine people that really do care about others and what is happening in their lives.
I've learned to appreciate each day and only really live one day at a time. With Dave going through chemo, each day is different, you never know what to expect. But that's ok, you just do what you need to do to get through that day, be thankful that you've had another day and get rested up for the next day!

I am thankful for Dave's family and the fact that we went to see them in Knoxville over Father's Day. I'm so grateful that his Mom and sister, Barbara encouraged Dave to have his leg (big muscle) checked out when we got home. I'm actually thankful that his Mom called almost every day asking if he had gotten in to see a Doctor yet! This is the time that we needed the prodding to see the doctor that eventually led us to getting the diagnosis.

I can't tell you how thankful I am we live near a city with some of the best doctors at Emory (Crawford Long). I'm amazed at the chain of events that led us to Dr. Monson who will eventually do the surgery on Dave's leg, and Dr. D'Amato who is managing his chemotherapy. These doctors are both top notch in their field and I thank them both for the care they are providing for Dave (and the tough love from Dr. D'Amato with the chemo)!
People's generosity amazes me and I'll be eternally grateful for how people have been so kind to us. Our neighbors are some of the best that anyone could ever ask for and I'm indebted to them. Every time I hear Bob or Kevin's lawn mower or leaf blower in our yard, I almost cry. These guys just get out there and take care of our lawn for us and I can't thank them enough.
Dianne (my next door neighbor) immediately offered to coordinate the meals for us and for those who know me and my lack of organization, I'm again, eternally grateful. So many friends, neighbors, gals from church, have brought us amazing meals and believe me, I have 3 men to feed that like good food! I've definitely learned the art of portion control (for myself) to be honest with my weight loss endeavors, but have enjoyed so many delicious dinners. Just knowing that a few meals a week are being provided has eased my mind of what needs to get done around the house, so I'm very thankful for all the people that have brought us meals.
I'm also thankful for the support of loved ones. Family has come to stay with me to help with Bryce & Kyle when Dave has been in the hospital for his chemo. The weeks he's been in the hospital are exhausting for me and I truly appreciate those who still love me even when they see me at my worst. I know I can be ornery when I'm tired, (I really am trying to work on this), but I appreciate all those that still love me after seeing me with "warts and all". (No, I really don't have warts, just the expression seemed appropriate!)

I'm thankful for the family that has traveled to be here to support Dave. Taking the time out of your busy schedules is difficult these days, but I'm so appreciative of the time you've spent here helping us during this time.
The support we've had from the teachers and staff at the boys' school has been amazing. I know that when Dave is in the hospital, the kids are truly cared for and the teachers are keeping a close eye on them for me. This comforts me so much, because I love my boys so much and I know they are hurting when their Dad is in the hospital. Again, I am just so thankful for the people in our lives.
To know we have so many people praying for us on a daily basis is overwhelming. I truly know that God is carrying us through this journey and we aren't making it on our own. I believe that daily, God is showing me His mercy and grace and with so many people lifting us up in prayer, I am at peace. When people ask, "And how are you doing?" I honestly respond, "Fine". I couldn't say that without God's grace and the support of all those around us.

Most importantly, I'm so thankful for my wonderful husband of 21 years. I truly understand the vows we took, especially the part, "In sickness and in health". It's not easy all the time, but being the help mate to Dave is something I don't take lightly. His attitude through this whole thing has been amazing and I'm thankful for his spirit. It would be so easy to be so depressed, but he is really fighting this and wants to beat it. I'm so thankful he's my husband and I want him to be for at least the next 42 years!!!
Enjoy this time with family and friends and truly think about what you have to be thankful for. We love you and thank you so much for being there for us.

I declare the worst of Round #5 over!

Well, I’m back home from the hospital now and feeling pretty good. (If not for the nasty hospital food, I’d probably be feeling great.) My white counts as of this morning are now almost normal and my neutrophil levels are out of the critical range, so I’m clearly on the way back up. And since the low neutrophils are typically the only serious problem I encounter during a cycle, I think it’s safe to say that the worst of Round #5 is behind me.

Thanks to all for your thoughts, prayers, and support.

--Dave

Still in the hospital

Hey, it's Holly again (using Dave's laptop)...anyway, he's still in the hospital and hopefully will get discharged tomorrow (Saturday). It's a good thing he came down, his neutrophyls were pretty low yesterday (around 60) and are coming up slowly...about 300 today. The docs say he can usually go home when the counts get up over 500. At least they weren't as low as last round! The doctors also ran some bacteria cultures which so far have come back negative. As long as they keep coming back negative and his neutrophyls keep coming up, he should check out of here tomorrow!

He's feeling pretty wiped out but is hanging in there. He'll be glad to get home. So, that's about all for now, thank you for your continued prayers and support. Holly

Dave's Going Back to the Hospital

Real quick note here...yes, Dave is going back to the hospital for neutropenic fever...I'll post more tomorrow when we have some details.

Dave's got a fever...

Hey, it's me, Holly. Just wanted to keep you up-to-date...Dave's been really, really weak today and now he's starting to run a fever. We'll see what the doctor wants us to do...hopefully, the fever won't be going any higher, (100.6 right now), but I'll let you know what's happening as things progress. He's been extremely tired today and since he white counts were in the critical level yesterday, we're not too surprised about this. Sooooo, keep your fingers and toes crossed that it's nothing serious....that's all for now!

White Counts Critical

I got my lab results back from this morning and the charge nurse has noted that I have critical white blood cell counts at 0.6. Other stuff is low too, but not quite critical. This makes me very susceptible to neutropenic fever and infections in general. Your thoughts and prayers are appreciated here as I would really like to avoid any unscheduled hospital stays.

If I can make it through the next few days (and nights) without incident, I should be fine.

Thanks for your support,

--Dave

Weekend Update

Sarcoma Q & AOK, time to head back to the classroom for a bit. Do you know what a sarcoma is? Well, this helpful t-shirt aims to answer that question. Please read carefully . . . .

Front side of t-shirt (click picture to zoom)

Back side of t-shirt (click picture to zoom)

This was actually the official t-shirt of the Atlanta Walk for Sarcoma Awareness event, held back in mid-July. I had asked for a t-shirt months ago, but they had run out. Since then, however, Dr. Gina D’Amato ordered more for her patients and I got mine on Monday when I checked in. Yeah!

You’ve Got Mail!When I got home from the hospital late Thursday, Bryce informed me that I had “lots of mail”. It turns out that a number of students from his 4th grade class had sent me handcrafted, personalized “get well” cards. This was yet another very kind and touching statement, which I credit to Bryce and his teacher Ms. Wilkins. As you may recall, a month ago this classroom sent me a large “get well” poster, which is currently hanging on my porch.

Nausea Mostly Under ControlThough I’ve been fighting some nausea since I’ve come home from the hospital, the Emend seems to be keeping it pretty well in check. At 3 days out of the hospital, I’m pleased with how things are going.

Round #5 Not Over YetThough it’s easy to get excited about being out of the hospital and done with the Chemo portion of Round #5, my toughest battle with this round still lies ahead. It seems as though always around the 5-day mark (post hospital) that my white counts drop to nothing and that I become quite susceptible to neutropenic fever (which happened after Round #1, #3, and #4). I really would like to avoid any unscheduled ER trips this round and see that my white and neutrophil counts come back on their own from the comfort of my home.

A heartfelt “Thank you!” to family, friends, and supportersThe importance of support during a time like this cannot be overstated. And fortunately for me and my family, we have been very blessed with an outpouring of support from our family, friends, neighbors, colleagues, church, and job, not to mention the dozens of acquaintances I’ve made through email and posts to this blogger site. I have to say that it is quite remarkable that people care as much as they do.

We have friends and neighbors providing us with meals, mowing our yard, watching our kids, and providing us with the emotional support that we need. Quite honestly, I don’t think that Holly and I could fight this battle without them. I only hope that one day we can repay them for their kindness and generosity. Certainly this experience has taught me just how deep human compassion can and should go.

Early Parole Begins Today

Well, it looks like I’ll be getting out today on “good behavior”, starting sometime I guess about 3:00pm. That’s a little later than I had hoped, but earlier than it could have been. Hopefully all will go smoothly with the discharge papers and the “parole board” so that I can get home at a good time today.

All things considered, this round has gone fairly smoothly. I had some minor discomfort with the nausea, but nothing too bad. As usual, Holly brought me lunch every day, which I am quite certain helped a ton. Avoidance of prison food is a must for survival under these conditions. And Holly (as you might have guessed) has built up quite a reputation here with the prison staff here, exchanging exquisite baked goods for leniency and special favors. Several workers are already hooked on her 7-layer bars , and her irresistible banana nut bread is getting smuggled in today. (My apologies to the nurses on this floor for the prison analogy – the nurses here are all just wonderful!)

Tomorrow afternoon I head back down here briefly for my Neulasta shot. And hopefully during this upcoming week, I will not experience any neutropenia (low white blood cell counts) that would land me back in the hospital again. I’m just not sure we can handle any more unscheduled hospital visits. Trust me, it’s bad enough just being in “jail” for the chemo, but it’s always far worse when you’re here for an unscheduled stay and you feel like you’re on “death row”. That’s definitely a sentence I’d like to avoid!

Round #5 begins now

Well, I’m checked in at Crawford Long Hospital (room 7130, direct dial 404-686-7130) until later Thursday afternoon. Still waiting for chemo, though they should have that flowing within an hour or two. Not much to report at this time, other than I’m feeling fine (for now at least) and am looking forward to getting out on Thursday.

Last week’s tests all OK

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

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

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

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

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

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

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

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.

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.

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!

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.

Neutrophil Update

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

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

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

Quick Update

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

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.

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.

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...

Round #4 Coming to a Close

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

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

Class Poster

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

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

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.

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!

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...

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

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! ;-)

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...

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.

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!

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.

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.

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

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!

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.

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.

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.

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”.

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...

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!

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!

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.

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

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.

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).

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.

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:

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:

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!

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!

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!

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)

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.

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.

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.