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 Jan 18, 2004
Thanks for all the kindness
I never intended for the last entry to be Gary's death, I just needed some time to get my thoughts together. Not that they are really together now, but a little less hazy.
I've been busying myself with a make-shift life for now --- unnecessary errands and projects, distractions to pass the hours. It may be "make-shift" for now but I have faith that it will turn into a "normal" life one day. I just saw our friend Jim Rafferty and we were talking about how single events, like the day Gary was diagnosed with leukemia, really shake you to your foundation. How it becomes painfully clear that what you assume life is going to be is absolutely not the way it's going to turn out. There's no preparation for it.
The kids and I have had terrible colds for the past week and we are all just recovering now. Patrick is at Gary's mother's house for the night and Lib is with my mom. I have the place to myself and I should be cleaning the kitchen. That's why I'm writing in the journal.
It has been a great comfort to go to my mailbox since the funeral, and open the many cards that arrive everyday. I always thought sympathy cards were inadequate consolation to folks and I don't always send them, but now that I'm on the other side, I take comfort in the cards people selected for me and the precious notes friends had the courage to write in them. The numerous emails that were lovingly sent to me before and after Gary's death, and the many comments in the journal are also a cherished legacy for me and for the children to read in the future.
On a slightly funny note, last Friday (the 9th) I was inticed by my friends Nan and Dana to join them for happy hour at James Joyce Pub downtown. Libby was at Mom's and Patrick was with Linda (Gary's mom). So I though it would help to be out with friends and suspend reality for a while, hang out and have a fun evening. We had a great time chatting about nothing important and sharing a few beers together. I walk though my door around midnight, whereupon the phone rings. I answer it, now concerned as to who is calling me at midnight, only to have my Mom tell me that Linda has had to take Patrick to Union Memorial Hospital because he has a high fever and is vomiting. Hmmm. Before I even hang up the phone my Aunt Sue has arrived to drive me to the hosptial to be with Patrick. I guess it's a good attribute, but I never really freak out about things like this -- I knew Patrick was sick, but I also know my pediatrician (who Linda had called) sent him to the hospital as a precaution. So I wasn't too worried. The only thing I'm thinking about on the ride to the hospital is that I reek of smoke from the bar and probably have beer on my breath. I feel like Mother of the Year: my husband has just died, my son is in the ER and Momma's out partying. I didn't beat myself up too bad, I just had to shake my head at the way things go sometimes. Patrick is fine, just a cold. And I may or may not go out with my friends again. Might be too dangerous for the children.
More later when I have more cleaning to avoid. I miss Gary, as I'm sure all of you do in some way. Life's a bit lopsided and askew at the moment. What I though would be, isn't and what is, dosn't seem real.
Love to all--
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Wed Dec 31, 2003
Gary died last night at 9:13pm Tuesday, December 30, 2003. It was peaceful. I told him he could. And he did.
More later. I'm consuming myself in the business of the funeral process and I look forward to seeing all of you soon. I'll post the details when I get them or there will be an obit in the Sun.
I'm OK and we're all going to be just fine. Just a lot sad for a long time.
Love to all--
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Tue Dec 30, 2003
Gary's journey is drawing to an end
I think this is the second most feared journal update I was afraid I would one day have to post. I think the most feared will be in a day or two.
Gary has been full-out battling fungal pneumonia for the past two days. I think it will come as a surprise to most of you, it certainly crept up on us. Yesterday (Monday) morning, Gary had to be placed on an oxygen mask to help him breathe. It became a bigger and bigger struggle for him to catch his breath throughout the day. Although he has been on anti-fungal medication since they first suspected the pneumonia five days ago, Gary's lack of immune system is not allowing him to recover. I was able to have many lucid conversations with Gary late last night and early into this morning. We knew we were rapidly approaching a crossroads where Gary either needed to be intubated in order to continue to get him oxygen or he needed to go on a morphine drip to control his gasping breath and very high heart rate. Gary and I had made this decision long before he became sick in our health care directives. After being able to discuss it with Gary last night, we elected to put him on the morphine and get him comfortable and prepare for his eventual death. The doctors assured me that if we did choose to intubate him, he would die on the machine as his other organs would soon begin to fail as well.
Gary is now pain free, struggle free and deep aspleep on the morphine. As the pneumonia progresses he will get less and less oxygen to his blood and organs and they will being to fail. His death will be in his sleep. The doctors say maybe a day or two. I hope for a short duration.
We may wonder how I can compose this posting and I don't know how I'm doing it myself. I've just gotten home to shower and head back to the hosptial for the night. Gary and I are surrounded by friends and family who love us and are grieving the loss we will soon face.
I will expound upon our long journey in later updates, and we can all wonder at Gary strength and resilience another time. I am in the process of thinking about funeral arrangements, and I am blessed to know that many times Gary had the clarity of mind to tell me his exact wishes, and so many decisions will be easy for me. I'm numb and I'm functioning and we'll see how far that gets me. Don't be mad at God or the world. No need to ask why all this happened. Gary never did.
Sketchy plans for the future will include a Celebration Extravaganza, to remember Gary, meet up with old friends, and have a good excuse to throw a party.
You can't know what cancer is like until you are in the thick of it. I don't know why God chose Gary and I to fight this fight, but maybe one day we will all gain some clarity and be deeply changed by Gary's presence in all of our lives.
All our love,
Gary and Marcy Galloway
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Sun Dec 28, 2003
End of week two..
Nothing much new to update on Gary's condition, other than it seems as if the nose bleeds are finished. He had a few good coughing attacks today, and the nose held. The severe nausea is still an ongoing problem, as are the high fevers. Gary is getting blood and platelets everyday -- I think the fevers are chewing though the platelets and maybe some of the blood. His nurse told me today that people who receive a lot of transfusions sometimes don't get as big a bump in their hemocrit (red blood count) as they used to from a transfusion. This may explain why Gary needs so much blood to get the desired effect of a raised hematocrit. I don't know.
Today was a very hard day for me as the cumulative effects of Gary's prolonged stay in the hospital are wearing on me. It's been a very lonely two weeks. I called my dear friend Nan and she came and sat with me and cried with me and made me laugh. Thanks, Nan. You're my "Go-to Girl".
For some reason, I have been harboring this overwhelming feeling that I wish everyone could know how hard this is, to sit in the hospital day after day, and watch him struggle and not be able to effectively help him. Or know how hard Gary is working and what an amazingly strong person he is or how much he tolerates without complaining once. I don't know why it would be important for people to know or why it would make me feel better. Perhaps someone could explain it to me.
I will be in the hospital tomorrow morning hopefully in time to meet with the doctors when they round. I have a whole list of questions that I hope can be answered. I usually just get a shrug or the standard "we don't know" response. I'm also planning on paging Dr. Jones to get a pep talk. I need one, and we haven't spoken with him since before Christmas. I always like to get his spin on things.
I took the kids into the hospital on Christmas Day to see Gary and open gifts from Santa. We managed it, but Gary was in the middle of a massive nose bleed when we arrived. Luckily, our friend Dave was with me to help corral the kids while I helped Gary make it out of his room. Gary and I agreed that this was the worst Galloway Christamas on record, but Gary did point out that it WAS, in fact, ON RECORD. He is incredible.
I hope to have more progressive news soon. We're all working pretty hard around here to make that happen.
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Wed Dec 24, 2003
Christmas Eve 2003
The children are nestled all snug in their beds... Well, it will most definitely be Christmas at Hopkins this year. The aforementioned plan for Christmas day will be enacted and life will proceed. It would have been great to have Gary home on ANY day, not just Christmas.
Gary's nose continues to bleed on and off (especially when he coughs or vomits, which makes his nose bleed, and the blood collect in his stomach, insuring more nausea, etc.) They did another follow up CAT scan of his chest and now feel that the previously undescribed gunk in the lower part of his lungs might be fungal pnuemonia. They are treating it with a new drug, whith side effects of nausea, chills, fever. Hmmm.
I took the kids to church tonight -- crazy children's service-- and met up with my Mom and Grandparents and cousin. Also the amazing Krista Kulczycki who has become our most-of-the-time nanny and babysitter extrordinaire. Her father is the pastor at our church and Krista and her sisters have been a blessing to us and our children with all their help and genuine love for our children. I did not succeed in sending out Christams cards yet, but let's call them Holiday cards and if that doesn't work out, maybe New Year/ Best Winter Wishes cards. Let me tell you, that the kids looked beautiful in their Christmas get-ups, especially our girl Libs. Black velvet jumper complete with red wool coat with fur trim on the collar and cuffs. AND the matching wool hat with fur trim. And the required black patent leather Mary-Janes. I will get their picture and try to post it on the site (or include it in the Festivus Cards). She was the belle of the ball and she knew it.
So all is quiet here on the homefront and Gary contiunes his heroic fight on the front lines. I think we will just need some more time to resolve the many things going on with him right now. And we have as long as it takes.
Dash away, dash away, dash away all---
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Tue Dec 23, 2003
'twas the night before the night before Christmas
So... Gary's still an inpatient at Hopkins. Still battling on again, off again fevers, and constant nausea/vomiting. His nose is still intermittently bleeding from the sinus biopsy from last week, and he's gained 10 pounds from fluid retention. Here's some better news: In the continuing search for the culprit causing all this sickness and fever, Gary had a MRI done on his brain last night to make sure there wasn't any inflammation of the membranes or any bleeding going on. That checked out OK and then the docs had a spinal tap done to rule out any disease (infection, leukemia) in his central nervous system. That checked out normal as well. No bad news there. Current therories being raised on what is causing Gary's illness: viral infection affecting the liver, or remanants of the initial blood infection he had last week still being processed by the liver. Or effects from the Gleevec/Interferon drug regimine. But his liver enzymes have become "normal" enough so that he can now take Tylenol again to help combat any future fevers.
It does not look like he will not be sprung in time to be home for Christmas, but we have a plan for that, and I feel strongly that if you have a plan, then things will be OK. Besides, our children are young enough not to realize that Santa Claus doesn't bring EVERYONE'S toys to the hospital. We will have a GREAT morning together and there will be wrapping paper and chaos everywhere.
We are in the season of Christmas miracles, so there's still a chance that Gary could make it home, but we're very realistic people. We're keeping our eye on the prize -- and that is that for all this craziness we're going through right now(and for the last month), Gary's leukemia seems to be in check and his numbers are stable.
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Sun Dec 21, 2003
Still an Inpatient
Gary is still fighting off high fevers and vomiting. We don't know the source of the fevers -- his blood cultures are all negative for infection, so it might just be the effects of the Interferon, although he hasn't had a shot since Friday night... The vomiting/nausea is still a big problem, and Gary needs IV anti-nausea drugs before he attempts to take his pills. He is keeping them down, but it is constant struggle. Tomorrow (Monday) Gary will have a CAT scan of his brain, and a spinal tap to see if this uncovers any more clues as to why he is still so sick on the stomach. They will also look for any signs of the leukemia in his spinal fluid. That could also be a contributing factor to the nausea and high fevers. They can't give him Tylenol because his liver enzymes have been elevated (Tylenol is hard on the liver), but his enzyme levels did come down today, which is good. But still no Tylenol for the fevers.
He also has some mild pneumonia-like stuff in his lungs -- they are already treating him with broad spectrum antibiotics, anti-fungals, and anti-virals, so that should cover any developing lung issues. Gary did manage to take a couple of laps around the unit today to get his muscles and lungs moving.
I am anxious about tomorrow's tests, but we need all the information we can get to continue to wage an effective war.
Kids are asleep -- they were at Mom's for the day. I had to extract Patrick out from under his bunkbed at Mom's where he had fallen asleep. Libby, the sensible one, was sleeping on the mattress IN her crib. She now says, "thank you", "here", and "boo!". Galloween is deep in her blood.
I'll keep everyone updated on the results tomorrow.
And to all a good night---
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Fri Dec 19, 2003
OK. Here's the summary/checklist of things that are fixed vs. things that are still broke:
Jaw/teeth pain: gone
Blood Infection: clear
High Fevers: Gone
Nausea: somewhat better
New Issue: It looks like Gary has a slow leak in his gut somewhere. They are finding blood in his stool and it looks like he may be bleeding from somewhere in his gut. The docs don't want to scope him, because it will cause more harm/trauma than good. The plan is to give Gary lots of platelets to help stop the bleeding and to give him red blood as needed. They have his platelet count up to 66,000 by this morning (he got a bag of platelets every 8 hours yesterday and overnight.) He feels like he is personally depleting the blood supply in the Mid-Atlantic region, so if you can donate blood or platelets we would feel less guilty. Thanks.
Hopefully with the help of the platelets, and the rise of his own white blood cells, the "leak" will heal on its own, which it the best scenario for this situation.
He had a much better day yesterday and actually wanted some chicken broth! No great leaps, but progress nontheless.
The kids are being shipped of to assorted grandparents for the weekend, and I will be able to concentrate on getting Gary feeling better.
Love to all--
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Wed Dec 17, 2003
I arrive at Hopkins this morning to find all sorts of gowned-up folks in Garys room and Gary telling me "You don't want to be here for this". Some ENT (Ear, nose, throat) docs came to take a tissue biopsy from Gary's sinuses because the CAT scan he had on Sunday showed signs of infection and he spiked another high fever last night and they were afraid he may have a fungal infection up there. Fungus infections in compromised people (like Gary) can be deadly, so they needed a sample of tissue to rule out this possiblity or treat it immediately if it was positive for fungus. You know how Gary said the last bone marrow biopsy was "off the charts"? Well, apparently there's this whole OTHER chart for pain we didn't know about and he experienced it this morning. They could not give him anything to numb the area because it would skew the test results. It was not plesant for me, either.
After the biopsy (which came back negative for fungus. Just a case of regular ol' sinus infection) Gary's nose proceeded to seriously bleed for the better part of the day because his platelet count was so low when they did the procedure. They ended up giving him two bags of platelets to help him clot and a unit of red blood to replace all the blood that he lost today.
He's still needs IV anti-nausea drugs in order to take his pills, but other than throwing up a stomach full of blood (run-off from the sinus biopsy), he was a lot less sick on the stomach.
Wow. This is a really great read, huh?
When I left tonight he was napping comfortably and hopefully things will go well tonight. He does get his shot of Interferon tonight however, and that's always good fun. The big picture is looking stable and I try to stay focused on that when I can. But it's definitely like not being able to see the forest for the trees. And the trees are making him very sick in this analogy. Sycamores, maybe. I'm tired.
This is all going to work out somehow. Don't KNOW how just yet, but I'm not in charge. Gotta remember that.
Did everyone get something to eat?
Love to all---
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Mon Dec 15, 2003
Monday Night Update
Gary is still battling a high fever, which may be due to the interferon injection he got on Sunday night or it may be from the blood infection for which he is being treated. They are trying to keep his nausea under control, but the drugs make him sleepy -- not such a bad thing. His white cell count is rising, but Dr. Jones is not concerned -- probably due to the infection. Gary did get one unit of red blood today, but they can't give him the second unit until his fever drops a bit. Hopefully the antibiotics will start to do their thing and we will be home by the weekend (or sooner?) and then back to the daily grind here at home.
Spirits are good, the kids are asleep, and Libby has another tooth (that's 5 for those of you scoring at home) The Christmas tree is still standing, and surprisingly, no one is too interested in it. I am hoping to take some Christmas pics of the kids to send out in cards, but they might turn out to be New Years holiday cards instead. My goal everyday is to make sure everyone gets fed and told "I love you" at the end of the day. My record is flawless so far.
So, I hope you all had something to eat and I love you---
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