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.