On January 24th, I was officially diagnosed with
Leukemia. We had our suspicions a few days earlier given the poor blood results.
The news, as you can imagine is still settling in. I have decided to keep this
journal to allow me to keep some focus on other things besides dwelling on the
Whys and Hows. Things have and continue to travel 100 mph.
So enjoy the read. Please register with the site. It is great to see all the folks keeping up with me and allows you to be notified when I put up new material. Also, by registering, you can leave comments on my postings which I enjoy reading.
IMPORTANT. If you want to read my journal since I was diagnosed, go to the archive section on the left, click on January and scroll down to the bottom and read by date.
Sun Dec 14, 2003
Back in the Hospital
As you may have been reading, Gary has been very ill for the past week or so. He hasn't been able to keep any food, liquid, or pills down and he has been having muscle pain in his legs and very bad jaw and teeth pain. We have been attempting to treat some of these symptoms at home, unsuccessfully. We recieved a call this morning from Dr. Jones telling us that blood drawn from Gary's central line on Thursday grew up a bug (infection) and Gary had to be admitted. Frankly, I was relieved. It has become very difficult to care for the two little ones and attempt to help Gary with the multitude of problems he was trying to work through. We needed some professionals on the case.
So here we are at Hopkins. They are treating his jaw pain with morphine and that seems to be working. They have also given him intravenous anti-nausea meds which have taken the edge off and have allowed him to sleep for the first time in many days. He has a fever around 102 which is probably from the infection. They are giving him IV antibiotics to fight the bug and when the fever breaks, he will be getting platelets. My main concern is that he has not been able to take his Gleevec for a few days, but with the help of the anti-nausea meds, he should be back on the wagon again. We will also need to re-start the Interferon shots soon.
More info tomorrow when Dr. Jones rounds in the morning. Gary's white cell counts have also risen, so we will need an interpretation of that data, too. The kids are with Mom for tonight and tomorrow, so I am looking forward to getting a good night's sleep as well.
Keep us in your thoughts, and I will report back on Monday with (hopefully) more information.
Love ot all--
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Fri Dec 12, 2003
Gary went for his weekly checkup with Dr. Jones yesterday. The big picture is looking encouraging at the moment: his white cells are rising and more specifically his Neutrofils are on their way up, too. These are the cells we need on hand to kill the leukemia. The day-to- day feeling like complete crap continues, however. The interferon and high dose of Gleevec has left Gary unable to eat almost anything and also very nauseous most of the day. Dr. Jones gave him a prescription for Paxil, a common anti-depressant that also works against the side-effects of the interferon (nausea, fatigue, joint and muscle pain). Now all Gary has to do is to be able to keep the pill down.... Details, details.
Gary also recieved two units of blood yesterday. I know the Red Cross is critically low on blood right now, so if anyone is able to donate we would greatly appreciate it. The number is 1-800-GIVE-LIFE
Gary's still in bed, so I don't know how the day is exactly going to unfold. But we'll hope for the best. We're going out for a Christmas tree on Saturday, with many friends offering to help us get it set up in the house. I wonder if anyone will still be around to help us pull Libby out of it...
Love to all--
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Mon Dec 08, 2003
Monday on Rockaway Beach
Gary and I went to RDA's holiday party on Saturday night and had a very nice time. I know Gary really enjoyed chatting with collegues he hasn't seen in quite a while. The most common complaint we received (perhaps complaint is too strong of a word. Suggestion maybe) is that we don't update the journal often enough these days. People apparently panic when they don't hear from us. I can fully understand that reaction. SO, as a pre-New Year Resolution (that I will promptly disregard in a few weeks) I will try my best to update the journal more frequently.
Gary is having knee and shoulder pain today -- most likely results of the Interferon shot from the other day. He gets shots on Tues, Thurs, and Saturdays and the "flu-like" symptoms begin about 18 hours afterward and linger until about the time he's due for another shot. Rinse and Repeat.
The Galloway family is off to the Price Club today to buy diapers in bulk. Patrick is very excited to go because he likes to pay homage to the row of "bacuums!" His obsession with the Hoover is unwavering. Libby heard word on the street that they hand out food samples at the Price Club. She is determined to participate as much as she can.
If we're very brave, we may get some lunch.
Gary and I scored some Terps Basketball tickets from RDA last Tuesday. Gary's friends Larry and Dave joined us for pre-game dinner (Gecko's in Patterson Park) and then the game at the new Comcast Center. The game and the seats were excellent.
Gary goes back to Dr. Jones on Thursday for his weekly blood work and checkup. His platelets are taking a beating from the Interferon and he may need to get a hit soon. His red blood levels are steady, but his white counts are still in the tank thanks to the Gleevec. That's where we want them for the time being.
That's the update for now -- nothing too exciting going on. Fine with me. Slow and steady wins the race.
Love to all---
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Sat Nov 29, 2003
The pain, for the most part, has been pretty managble. I am at the full inteferon dose since Monday so we wait and see. I did not get a bone biopsy because it would not change the course of treatment at the moment. The German study seen results in about a 4 week or so period once at the full dosages. I suspect 1st of the year I will get "tapped".
My days are up a down now--compliments of the interferon. We try to run with the good ones but we don't know when they present themselves--then its a logistics scramble to actually get out of the house....nothing new to those that have toddlers.
Thanksgiving was nice. For the first time in history I did not finish my first plate...very sad. I, however, did take a raincheck from the various chefs.
Got a new suit so I am styling and profiling for RDA's holiday party. As always, zero to shit in seconds in this household so fingers are crossed that I will make it this Saturday.
Hope everyone had a great Thanksgiving and GO DONS!
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Sun Nov 23, 2003
Here we go again . . .
A long lost friend, the severe right hip pain, reared its head on Friday. It did not quite feel like the Interferon induced joint pain. Friday night it lite up. Popped an Oxycodone. Did not sleep Friday night. Popped another Oxy (fresh supply from Rush), late morning. The pain broke late Saturday afternoon. I have been on limited movement duty so I don't flare things up. Dr. Jones, who I was in contact with on Friday and Saturday says I can't get in on the weekend for a Biopsy. He is fully in the camp that my bones don't shovel sh#t--read...good indicator that something bad is going on.
I have been fairly pain free on Sunday but I can feel it echoing when I walk on sit funny. We are going to reconvene Monday morning to see what the next steps are. I am not sure if a Biopsy even changes the course of treatment if the Leukemia numbers have started to rise. Mentally, if the counts have dropped since the last one, that would be cool but not sure the pain tradeoff of the Biopsy is worth it. Thankfully the pain broke, I only had to take two pain pills and I am still at home. Sweet. The pattern last year for this anniversary pain is that it would come and go....about every 4 to 6 days or if I do something to fire it up.
On the lighter side, we visited a friend from work on Friday who has a boy a little older than Patrick. They played hard and in fact, Patrick's playmate closed the visit headng to the emergency room for a few stiches...the match, fyi, ended in a draw...Patrick had the poundage over the challenger who had the experience and quickness. Round II next month???
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Mon Nov 17, 2003
Interferon, Flu and Cheesy Lights, oh my . . .
I have been remiss in my journal updates so I will give the monster one. Thanks to all those who emailed me directly wondering what gives!
Here is the skinny from the marrow tests and the next steps. The biopsy showed a 50% reduction in the leukemia cells down to 23% of the cell blasts are the diseased ones. This is decent news. It could have gone the other way or stayed the same. Dr. Jones feels this is the Gleevec and some Graft VS Tumor effect although there is no physical evidence of GVHD (rash, elevated liver enzymes). I had a skin biopsy from my chest which showed no detectable Graft VS Host Disease as well. If it was positive, then we would have stayed the course with the Gleevec only. Since it was negative, I started taking shots of Interferon; a naturally occurring protein in the body that is part of the immunological cascade (cytokines, etc. for those remembering biology). So you ask … wassup with the Interferon? There have been some promising results in Germany published this year that Dr. Jones concurs with and is following. Here is the abstract of the article. It is available at Nature for a fee…the cost of science.
Efficacy and safety of Gleevec in combination with interferon-alpha (IFN-alpha) in Philadelphia chromosome-positive acute lymphoblastic leukemia (Ph+ALL)
Gleevec has marked antileukemic activity in advanced Philadelphia chromosome-positive acute lymphoblastic leukemia (Ph+ALL), but secondary resistance develops rapidly, reflecting the limitations of single-agent therapy. Experimental data suggest that interferon- (IFN-alpha) enhances the antileukemic activity of Gleevec. We therefore examined combined Gleevec and low-dose IFN-alpha in six patients with Ph+ALL who were ineligible for stem cell transplantation. All patients had received Gleevec for 0.5-4.8 months prior to IFN-alpha, for relapsed (n=3) or refractory (n=1) Ph+ALL or as an alternative to chemotherapy following severe treatment-related toxicity (n=2). Five patients were in hematologic remission (CR) with minimal residual disease (MRD+), one patient was refractory to Gleevec. Four of the five MRD+ patients are alive in CR after a median treatment duration of 20 (11-21) months. Two of these patients are in continuous CR 21 months after Gleevec was initiated, while the other two patients experienced an isolated meningeal relapse that was successfully treated with additional intrathecal chemotherapy. Sustained molecular remissions were achieved in three patients and are ongoing 13 and 10.5 months after central nervous system (CNS) relapse and 6 months after starting concurrent IFN-alpha and Gleevec, respectively. Marrow relapse occurred in one of the five MRD+ patients. Combination treatment was associated with a complete marrow response of 5 months duration in the Gleevec-refractory patient. Gleevec combined with low-dose IFN-alpha may achieve prolonged hematologic and molecular remissions in a subset of patients with advanced Ph+ALL, who are not candidates for allogeneic SCT. CNS prophylaxis is necessary and may enhance the antileukemic activity of Gleevec and IFN-alpha.
What is interesting is that the above patients did not have transplants, they were relying on there own immune system to get stimulated by the Interferon and attack the leukemia that presents itself more prominently because of the Gleevec. So, as I view it, I already should have a fired up, donated immune system that just needs a little kick in the butt. Fingers crossed as usual.
I visit Hopkins once a week now that I have been officially discharged from the PROGRAM. Marcy and I feel like we are flying by the seat of our pants. We are well trained now so we should do all right. The worst thing now is my counts are next to zero so I am very susceptible to infection. Dr. Jones is much more cavalier regarding this then the ladies of IPOP. We are going to hang out somewhere in the middle with regards to safety and such. I am hoping to hit my company holiday party which does not offend any of the religions that are currently praying for me.
What have we been up to? The first week of interferon was tough…flu like symptoms and bad nausea the next day (the shots are M W F ). We went to Ocean City, MD with my father and Kathy. They scored a nice 2 bedroom condo with a den. Cool with the kids and all. For those in the OC know…it is the festival of lights now—a profoundly, cheesy spectacle of trailer park Christmas decorations. Amazingly, a huge money maker for the town…not sure what it says about the visitors. Things went pretty well with the kids, my parents were out of control, however.
This week we jack up the dosage of interferon. Hopefully, the bad flu like crap I had does not rear its head again. We hit Hopkins on Wed. for some blood work and then Dr. Jones on Thursday and possibly blood and platelets.
Sorry for the long post but it has been a few weeks and wanted to get all caught up and stop those people emailing me wanting the juicy details they have come to expect..
By the way, I think I am officially Getting-My-Eat-On according to Marcy. It is about time. Personally, I think I have a ways to go yet.
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Tue Nov 04, 2003
Gary was supposed to get a bone marrow biopsy on Friday, but Dr. Jones wanted it done exactly on Day 60 post-transplant. That was today. Despite 15 mg of Oxycodone, Gary rated today's "ass-tap" as OFF THE CHARTS on the pain scale. Not only that, the narcotics make him sick, so he has spent the remainder of the day throwing up. Better days tomorrow.
We should get some preliminary results tonight and more definitive results by Thursday. We are planning a meeting with Dr. Jones after all the bone marrow results are in to get a new state-of-the-union and better define the action plan for Gary's future health. Let's all pray for clear (or clear enough) bone marrow results.
Galloween VIII : The Parenting Years. We took the kids trick or treating in our friends' (Karen and John Zarubaiko) neighborhood. They live in a very friendly townhome community with a high concentration of kids which of couse equals GOOD CANDY. Patrick and Libby had a great time and I have been raiding the loot ever since (For quality control purposes only. A good parent must know what their child is eating...)
We don't have to go to Hopkins tomorrow, so maybe if Gary is feeling better we can get out and do something (like a trip to Costco Warehouse. Man, life can get pretty exciting) Gary's counts are very low due to the high levels of Gleevec he is taking. He got two units of blood today and a platelet infusion may be in the near future. Hopefully the good cells that we hope his body is producing (thanks to his transplanted cells) will soon overtake the suppressing effects of the Gleevec and his counts will bounce back. And ALL of the leukemia will be left in the dust!
Libby is an offical toddler now and is starting to really walk around. We haven't decided what the devasting effects of this new skill will be, but we are quickly becoming afraid of her. She's trouble, I tell you, and should be feared.
Love to all--
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Wed Oct 29, 2003
Galloween on Hold this year
It was a sad time determining that Galloween will not happen this year. Way too much work and I am down a white cell or two these days. So, we will be taking the kids to a juicy neighborhood where our close friends live and see what kind of sugar stash we can get away with. I had one of my first "Son" discussion problems. The gist: "Patrick...what do you want to be for Halloween....A Butterfly....A Butterfly? Sure....What color Patrick...A Pink One." So how do I tell a 2.5 year old that Dad does not really want him to be a pink butterfly on Halloween and would prefer Leatherface from TX Chainsaw Masacre? Well you don't but I thought quick on my toes and we decided the MSN Butterfly would do. Man, when they said parenting was hard, they meant it. Libby, could care less what she will be as long as she is well fed. She is a Tank on a seek and destroy mission in the house.
Scoop on me. I have been pounding Gleevec for over a week now. My white counts have dropped significantly...in fact I am close to being fully compromised again. That sucks but it is the lesser of two evils. The Leukemia has been beaten down enough so that I am not in pain. The Drs. are also hoping the Gleevec heightens Graft Versus Host Disease so my dad's cells can seek and destroy. I am starting back up on some additional antibiotics as well.
I am getting an Ass-Tap this Friday to see what is in the Marrow. I expect to still see Leukemia cells (remember the sensitivity is around 1 million cells or more) but they should be in reduced numbers. After that, Hopkins is talking about releasing me to the outpatient services. Marcy and I are not quite sure what that means except we are not under the daily supervision of IPOP on the 5th floor. Scary. This is a step that we must take on the road to wellville. We should have some good information next week the outlines the next steps/milestones/risks. We are kinda in limbo at the moment which sucks.
Thats about all that is cooking these days. Speaking of cooking, I have had zero appetite and eating very little...compliments of the Gleevec I suspect. Not quite the diet I had in mind.
Take care. Have a safe and scary Halloween. Mark you calendars for next year's Galloween! Here is the link to the scary Galloween site with past pictures.
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Thu Oct 23, 2003
Feds indict the Galloways as part of the Rush Limbaugh investigation. . .
Well, it is I, the oxycontin addict. Apparently I have been going through detox all this week from my crazy stay in the hospital. I was on some serious stuff during my recent tour of duty. I have been suffering from sweats, vomitting, nervousness and general ain't-feeling-quite-right syndrome. I was/have been on all the same meds as Rush Limbaugh. I am not sure what kind of statement that is making but anyone wanting to send some cabbage my way for R&D, please do.
We are back into the waiting game. My shoulder still hurts. Probably from the nerve damage done by the shingles. I am hoping that lessens as time goes on but in the grand scheme of pain, I can deal. The back pain has left for now...hopefully, the Gleevec is doing its thing so Dad's marrow can do its thing. It is all wait and see. Scientific, huhhh?
If you noticed, the URL for this site has changed. I moved the site from my computer in the basement to a real server, outsourced. I also hooked one of my domains, www.dadswithcancer.org to it (pet project I am working on). This gives me more speed, data backups and general site protection. Hopefully, you will notice nothing except things being faster.
That's about it. I will update in a few. Thanks to all that checked in during my 10 day blackout. I literally lost 10 days I remember little about. How does Rush do it...hmmm Dear Mr. DittoHead...
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Sun Oct 19, 2003
Transplant Day +41: More sink holes in the road
Sorry we have been out of touch for so long, but the computer housing this journal went down and Gary has not been around to fix it. Here's what's been happening since we last wrote:
Gary developed a rash on his face which turned out to be shingles (common outbreak in compromised people). The shingles got REALLY painful and Gary was admitted to Hopkins in the wee hours of the morning on Friday October, 10. After four+ days in hospital, Gary's pain was still in an uncontrollable state -- either he was completely knocked out or he was awake, delusional and in agony. By this point the doctors became suspicious that it was not the shingles causing this much pain, and did a bone marrow biopsy on October 15th. We received the news later that night that the leukemia was back.
Here's the new plan: The docs put Gary back on a high dose of Gleevec, the wonder drug which no one seems to really know how it works. The idea is that the Gleevec will suppress the leukemia and at the same time mark all of Gary's cells in such a way as to make them more obvious to the transplanted cells in Gary's body. Kind of a "come and get us" blinking neon sign. Hopefully this will jump start Gary's Dad's cells to begin the attack on the leukemia. However, the same mechanism makes all of Gary's cells blinking targets and can lead to severe Graft vs. Host Disease, whereby the donor cells not only attck the leukemia, but will also wage warfare on Gary's skin and organs. It will be a delicate dance to illicit some Graft vs. Host (i.e. kill the leukemia) but not too much (i.e. attack organs). This balance is something the doctor's have not yet perfected. We hope to be their posterchild for success. Why not us?
If the Gleevec is not effective in holding the leukemia at bay, Dr. Jones mentioned another drug that's "looking good in the laboratory", with the third option to be a leukocyte infusion from Gary's dad. More on those options later, if we need to use them.
The Gleevec seems to be suppressing Gary's bone marrow at the moment, as his severe pain has gone down dramatically and he was able to come home today on oral pain medications. It was a very long and stressful week and a half. But we're home now and the kids have been returned to their own beds after running the grandparent gamut since Wednesday afternoon. Patrick and Libby are real troopers. I am too.
Speaking of me for a moment.... Just to make things interesting: I was minding my own business and hanging out in Gary's hospital room last Sunday, when I suddenly noticed that I couldn't see propery out of my left eye. I looked in the mirror to see if there was something in it and I noticed that my left pupil was completely dialated. Hmmm. I went to IPOP (the outpatient clinic Gary goes to everyday) to see if a nurse could shed some light on this ailment. She had the attending physician look at it and he suggested that I take a walk downstairs to the Wilmer Eye Institute emergency room to get checked out. Hmmm. So I take my dialated pupil downstairs, where I am immediately questioned and poked and innundated with eye drops. Then they tell me that I will need a CAT scan and an MRI to rule out the serious explanations for this condition, including (and I am NOT KIDDING): bleeding in the brain, an anuerysium, or a brain tumor. Hmmm. They called in the MRI tech from her home in Bel Air to run the scans on my brain. When I was in the MRI tube about 30 minutes into the ordeal, I considered FREAKING OUT, but I just could not believe God would be that mean. And I was correct, God was not that mean and as the Governor-elect of California would say, "it's not a TOO-mah". The conclusion from the eye docs is that I either got some weird drug into my eyeball from somewhere in the hospital or I had a strange ocular migraine. The next day my eye was fine. There's a life lesson here, I just don't have the brain power to decipher it right now.
So that's the update for now -- certainly not the best of news, but our journey is far from over. Gary continues to plow ahead in his battle. I've never known a stronger person.
Love to all and I'm glad the journal is back up -- Gary still has the computer mo-jo. Or maybe it's the Gleevec...
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