Just got a phone message from Jenny, my nurse, saying that the neutropenia crisis of September 09 is over. My neutrophil count is up to 2000, which would be low for any of you, but is just fine for me. It is much better than the count of 100 I had last Monday.
So I'm cleared to lick doorknobs again. You don't know how much you enjoy some things 'til you can't do them.
Liz made it home safe from Seattle (where she did another half-marathon over the weekend (had a couple of hours to kill so why not?)), Robbie was thrilled to see her home, and my big staffing event went very well yesterday, so all is right with the world.
(Anybody want to buy a box of 47 face masks? Anybody?)
Wednesday, September 30, 2009
Monday, September 28, 2009
Still Going...
Monday night, almost 8:00 p.m., and still haven't seen a temp above 99.0. I do have a little headache and could be getting something sinus-related. I'll keep taking my antibiotics and anti-viral medicine and hope for the best.
Shout out to Kim B., who dropped off a big batch of delicious butterscotch cookies yesterday for Robbie and me. Now a moment of silence for the late batch of cookies. The timing was great, as I am trying to put on weight anticipating a "weight losing" episode. If I recover the WBCs without getting sick, I'll drop some of this weight I'm adding. I kinda like being under 190#'s.
Big day tomorrow at work, perhaps the biggest. Hope we're ready. Hope your day is a good one.
Shout out to Kim B., who dropped off a big batch of delicious butterscotch cookies yesterday for Robbie and me. Now a moment of silence for the late batch of cookies. The timing was great, as I am trying to put on weight anticipating a "weight losing" episode. If I recover the WBCs without getting sick, I'll drop some of this weight I'm adding. I kinda like being under 190#'s.
Big day tomorrow at work, perhaps the biggest. Hope we're ready. Hope your day is a good one.
Saturday, September 26, 2009
Be Vewy, Vewy Quiet...
Saturday night, 6:00 p.m., temperature 98.2. So far, the various bugs floating out there haven't found me. Thanks to Mike, Kathleen, and Michael for making a grocery run for me--this after they spent the afternoon helping friends move. Saints, I tell you--saints.
Robbie was very good today, considering I spent most of the day cleaning the house downstairs (got to do something to kill the time). I'll find out next Wednesday or so how the white count is coming. As I think I may have mentioned, I expect the count to drop further before it starts up again. Every day without a fever is a good day. This is a good day. Thanks for the prayers and thoughts.
Robbie was very good today, considering I spent most of the day cleaning the house downstairs (got to do something to kill the time). I'll find out next Wednesday or so how the white count is coming. As I think I may have mentioned, I expect the count to drop further before it starts up again. Every day without a fever is a good day. This is a good day. Thanks for the prayers and thoughts.
Thursday, September 24, 2009
No, I'm not here to rob you...
If you saw my last post, you know that I now have a barely functioning immune system, having had a white blood cell crash this week. I'm taking precautions to prevent getting sick, including sleeping at least three feet from Robbie (I'm on a single mattress on the floor in the bedroom vice sharing a bed with him while Liz is gone), slathering myself with hand sanitizer on a regular basis, and wearing a face mask when I go public.
Made my first excursion in a face mask today. Truth be known, I felt a little "Michael Jackson-ish", except without the being dead part. I had to go to the grocery this morning and had been cautioned specifically about going to the grocery by Jenny. On the way home yesterday, I stopped by a local CVS and bought a box of face masks. Pulled on out this morning, put in on, and headed into the store.
At first I felt a little silly, assumed I looked a little silly, and thus was somewhat reluctant to wear the thing. Then I remembered how I looked in the pictures Liz posted in June (and some she didn't post--thank you, Liz) and decided this would be better.
No one stared, no one seemed perturbed, no one even asked. I said "hi" to several folks working, got my stuff, and got out. Bathed in hand sanitizer when I got out of the store.
I'm back home now, where I'll be working for the next several days (weeks?). Current body temp is 98.4. Keep your fingers crossed.
Made my first excursion in a face mask today. Truth be known, I felt a little "Michael Jackson-ish", except without the being dead part. I had to go to the grocery this morning and had been cautioned specifically about going to the grocery by Jenny. On the way home yesterday, I stopped by a local CVS and bought a box of face masks. Pulled on out this morning, put in on, and headed into the store.
At first I felt a little silly, assumed I looked a little silly, and thus was somewhat reluctant to wear the thing. Then I remembered how I looked in the pictures Liz posted in June (and some she didn't post--thank you, Liz) and decided this would be better.
No one stared, no one seemed perturbed, no one even asked. I said "hi" to several folks working, got my stuff, and got out. Bathed in hand sanitizer when I got out of the store.
I'm back home now, where I'll be working for the next several days (weeks?). Current body temp is 98.4. Keep your fingers crossed.
Wednesday, September 23, 2009
Neutropenic Again
Time to spin up the prayer wheels for a pre-emptive strike against any flu or other bug floating around. I just got a call from Jenny, the coordinating nurse for my trial. Despite the growth factor shot, my white blood cell count has crashed again. Now, I'm not sick (temperature was 98.2 about three minutes ago), but I am very prone to getting sick. Basically, I'm where I was in June right before I got sick, but this time I have foreknowlege of my condition and can use that knowlege to modify my behavior.
I plan to work from home until this gets better, and if I have to make a public appearance, it will be with a face mask.
Liz left on a trip to Seattle earlier this morning, but is spring loaded to come back as needed. I'll probably pull Robbie from school until she gets back.
It just keeps getting better and better.
I plan to work from home until this gets better, and if I have to make a public appearance, it will be with a face mask.
Liz left on a trip to Seattle earlier this morning, but is spring loaded to come back as needed. I'll probably pull Robbie from school until she gets back.
It just keeps getting better and better.
Saturday, September 19, 2009
Done with Chemo (for now)
It doesn't seem possible, but I'm done with infusion chemotherapy, at least for a while. I went in yesterday for my growth factor shot and that was that. Now, I still have CLL and it's still detectable, so I'm far from done with treatment--in fact I'll probably start the next phase of my clinical trial in November. But for now, no more IV's, no more liquid Benedryl, and sadly, no more Jamela, Mercedes, Mary Ellen, Sonia, Rasheeda, and Marta. The ladies on the Seventh Floor are truly professionals and good people who never fail to raise spirits. They know who has kids, who has new grandkids, and they always ask. I can truly say I never had a bad "stick" in those rooms. Thank you, nurses and staff of 7 West. We didn't drive the CLL into remission, but we sure beat the heck out of it.
Robbie and I are currently sitting in the Dulles Hyatt, while Liz is 12 miles north at the Algonkian Regional Park, should have just started to run a trail half-marathon. She is insane. We had a delightful dinner with Jim and Elena last night, highlighted by Elena's scratch made Chicken Parmigana. It was the most "real food" I've eaten in ages and it was really good. Rob and I will be getting breakfast soon, then may take a ride over to the park where Liz is running. I'm hoping that this is small enough an event that we may actually be able to see her finish (which should happen around 11:30).
Robbie and I are currently sitting in the Dulles Hyatt, while Liz is 12 miles north at the Algonkian Regional Park, should have just started to run a trail half-marathon. She is insane. We had a delightful dinner with Jim and Elena last night, highlighted by Elena's scratch made Chicken Parmigana. It was the most "real food" I've eaten in ages and it was really good. Rob and I will be getting breakfast soon, then may take a ride over to the park where Liz is running. I'm hoping that this is small enough an event that we may actually be able to see her finish (which should happen around 11:30).
Tuesday, September 15, 2009
Monday, September 14, 2009
Long Monday on the Last Week of Chemo
Well, I had my first of my last four chemo sessions today, though for a while I wasn't sure it was going to happen. It was one of those days. I got to bed plenty early last night, got up at 5:30 a.m., abluted, and hit the road by 6:10. I was about 20 mins from the house when I realized that I had forgotten the activation card for my laptop, with which I had planned blog and work today. It wasn't until I got to the Georgetown parking garage that I realized that I had also forgotten my cell phone, so I couldn't call others to ask them to do the work I was going to do. Not a great start.
Up to the seventh floor and into room 10. IV inserted by Sonia and blood drawn for my labs by 09:00. It normally takes until around 10:30 for lab results to come back and to have my drugs ordered. Today we had a hiccup--my absolute neutrophil count (ANC) had come out back at a number of 974. You have to have an ANC of at least 1000 to start chemo. Rather than send me to the store for more neutrophils, they sent the sample to have a hand count done (now there's a great job--neutrophil counter), which returned a value of 1250. It returned that value at around 1:30 p.m., and it was only then that my Rituxin and Fludarabine were ordered. Bottom line--I finished infusing around 6:00 p.m. and got home just after 8:00.
On the good side, my appetite has started to come back. I had a chicken salad sandwich and tater chips for lunch, with no apparent ill effects. I also gambled and for dinner had a cheesesteak from Wawa (for my southern friends, it's a convenience store chain). I'll let you know how that works out tomorrow.
Going to bed now, as I have to get up in about nine hours. Night, night.
Up to the seventh floor and into room 10. IV inserted by Sonia and blood drawn for my labs by 09:00. It normally takes until around 10:30 for lab results to come back and to have my drugs ordered. Today we had a hiccup--my absolute neutrophil count (ANC) had come out back at a number of 974. You have to have an ANC of at least 1000 to start chemo. Rather than send me to the store for more neutrophils, they sent the sample to have a hand count done (now there's a great job--neutrophil counter), which returned a value of 1250. It returned that value at around 1:30 p.m., and it was only then that my Rituxin and Fludarabine were ordered. Bottom line--I finished infusing around 6:00 p.m. and got home just after 8:00.
On the good side, my appetite has started to come back. I had a chicken salad sandwich and tater chips for lunch, with no apparent ill effects. I also gambled and for dinner had a cheesesteak from Wawa (for my southern friends, it's a convenience store chain). I'll let you know how that works out tomorrow.
Going to bed now, as I have to get up in about nine hours. Night, night.
Thursday, September 10, 2009
Sorry, sorry...
First, look below and read Liz's post (I'll wait...).
Let me get the whining out of the way (recapping some of what Liz said). I've had a series of little bumps over the last month that took all the spare energy I had, but the trends are all still good. First, coming off a cold a month ago, I had a dry, hacking cough that lingered until last week. Without sharing too much, the cough was characterized by thick throat yuk, which often deposited itself on the "gag point" in my throat, meaning I spent lots of quality time gagging. Enough to say that it's been ages since I blew milk out of my nose (you're welcome). That finally resolved itself after I developed a fever last week of near-scary numbers (high 99's to low 100's) which cleared up in time for a trip to Virginia Beach.
While at VB, Robbie played in the surf and on the beach for the first time ever. It took a little bit, but he loved it. We made tidal pools and played in the waves. Just as I was feeling cocky about feeling good for the first time in a month, I picked up either a touch of food poisoning or a stomach virus that made the last three days interesting. I will spare you the details. I think I'm finally through that, but of course I start my sixth chemo round next week, Command Staffing (a work thing) is coming due, as is NSPS (another work thing), so the rest of the month is going be a joy. The good news is that we are taking a family trip to Louisiana in October.
I met with Dr. Cheson and company yesterday and I'm good to go for next week. This will be the final round of Chemo for this session, which means I'll get to do another Bone Marrow Biopsy at the end of four weeks. Then I'll likely go into the next stage of the clinical trial. I'll keep you updated (I promise).
Lastly, feel free to throw in a comment. It really helps to know people are out there reading these. Thanks.
Let me get the whining out of the way (recapping some of what Liz said). I've had a series of little bumps over the last month that took all the spare energy I had, but the trends are all still good. First, coming off a cold a month ago, I had a dry, hacking cough that lingered until last week. Without sharing too much, the cough was characterized by thick throat yuk, which often deposited itself on the "gag point" in my throat, meaning I spent lots of quality time gagging. Enough to say that it's been ages since I blew milk out of my nose (you're welcome). That finally resolved itself after I developed a fever last week of near-scary numbers (high 99's to low 100's) which cleared up in time for a trip to Virginia Beach.
While at VB, Robbie played in the surf and on the beach for the first time ever. It took a little bit, but he loved it. We made tidal pools and played in the waves. Just as I was feeling cocky about feeling good for the first time in a month, I picked up either a touch of food poisoning or a stomach virus that made the last three days interesting. I will spare you the details. I think I'm finally through that, but of course I start my sixth chemo round next week, Command Staffing (a work thing) is coming due, as is NSPS (another work thing), so the rest of the month is going be a joy. The good news is that we are taking a family trip to Louisiana in October.
I met with Dr. Cheson and company yesterday and I'm good to go for next week. This will be the final round of Chemo for this session, which means I'll get to do another Bone Marrow Biopsy at the end of four weeks. Then I'll likely go into the next stage of the clinical trial. I'll keep you updated (I promise).
Lastly, feel free to throw in a comment. It really helps to know people are out there reading these. Thanks.
Wednesday, September 9, 2009
Guest Post - At Tim's request
Hey all,
Tim asked me to post an update on the blog for him today - mainly because he's tired and the combination of chemo, a cold followed by a stomach virus, and job stress (there is a critical phase of the NAVAIR engineering staffing that is in process right now) has been difficult. So Tim's energy is low, but he's still maintaining his positive outlook.
Some good news: Tim's last chemo cycle is scheduled for next week. The chemo is scheduled once a month for six months and despite his little incident in June, he's still on schedule and still in the clinical trial. The chemo has taken a bit of a toll on him, Tim is looking a bit gaunt and drawn and he's down to around 185 lbs. However, he is heading toward the last stretch so we think that all will be well and a break from the chemo will bring him back to more of his old self.
Note: he did say to me today, "hey, I'm finally down to the weight that all the Navy flight surgeons thought I should be!!! Now I just need to work on the muscle mass and I'll be a babe magnet!!" ( I didn't reply but he does look lean and mean)
We spent Labor Day in Virginia Beach, taking Robbie to the beach for the first time (he loved it). It felt good to get away, even just for a couple of nights. I ran a half marathon on Sunday, then we headed home with a stop at Wilson and Jennifer's for a wonderful visit. Nate and Jessica, Tim's nephew and his wife, were there with their two beautiful kids, Trent and Emmy. Robbie and Trent had a great time visiting together and we definitely need to get the kids together more - the pool at Wilson's house is great!! I got in the pool with the kids to keep an eye on them and I'm convinced that kids somehow don't feel cold water like their elders do. The pool was COLD!!! Robbie and Trent didn't seem to have much problem with it though....
I am trying to cut down my travel schedule but it's tough right now. Right up through November I could be in Waco, Korea, Seattle, San Diego, or Jacksonville every week. Between Tim and I we'll prioritize, the goal is to keep him healthy and fighting through the chemo.
I appreciate everyone looking in, I've include some Robbie pictures. The first is of Robbie and the claw from the 16lb lobster I caught scuba diving when I was 19. The second is of Robbie and Tim in Virginia Beach this weekend. Everyone have a great night.
Liz
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