A crappy New Years Eve
UGHHHHHHHHHHH I knew going into this that it was a day by day type of thing and at times hour by hour. But still nothing sucks more than having your loved one in icu basically in a medically induced coma on New Years Eve. As crappy as today was just because of the holiday it really turned to shit from the moment I got to the hospital. Gary’s oxygen levels were in the 80s ALL day. That’s with the machine giving him 100% oxygen saturation.
I learned from the oncologists’s physician assistant that he’s got a fungal infection in his lungs called Aspergillosis. The test just came back positive for it so they started treating it immediately. How he got it no one knows but it obviously does affect those with weakened immune systems and it can be deadly (go figure right?).
I’m at home trying to have some bonding time with our little man while Gary’s mom takes over hospital duty. I’m so thankful for Mikey. He somehow manages to bring a smile to my face even though I feel like my insides are falling apart. All I want is for his daddy to come home.
Today is just one of those days that I’m really hoping we get to tomorrow. It’ll be huge if we do because tomorrow will be the beginning of a brand new year too. It’s GOTTA be better than 2009, right?!?!?!?!
A good day :)
Last night I left Gary with his oxygen level around 95. I was happy with that. I went home and didn’t even bother to turn on my laptop because I was BEAT. I was so tired that as soon as my head hit the pillow I passed out. No need for an anti-anxiety pill for sure. I went in this morning and like I do every morning as I get out of the elevator I do a good number chant. As I get out the nurse manager is actually walking towards the elevator and he tells me that he’s holding on at 98! I walk super fast to get to him and low and behold he was holding on at 98 and I finally got to witness with my own eyes his oxygen reaching 100! That is HUGE!!!! I knew it was going to be a good day. And it sorta was.
I learned that early this morning, around 2am, they were able to take him off of one of his blood pressure meds. He was holding in the 90s without it. Once I got there they started talking about reducing the oxygen saturation on the ventilator. I was anxious to see how he’d do. Within an hour he went from an oxygen sat of 100 down to 75, while maintaining his oxygen level at 95. He started having some trouble so they bumped it up to 80, then 85, and finally 90. But this is expected. Most patients end up requiring this after the first drop. I’ll be happy if I get in tomorrow morning and he’s still holding in the 90s with his oxygen sat at 90%. And if it is at 100% then so be it, we’ll get him back down again.
Today Gary got some fancy footwear to wear in bed. He apparently is so swollen and is retaining so much fluid that he has blisters forming on his feet. So he has these socks and then boots that pad his feet so that the blisters don’t burst and he hopefully doesn’t get new blisters to turn up.
His nephrologist was happy about the dialysis. His kidneys are still not working and he doesn’t expect them to until his blood pressure increases. His pulmonologist was happy with today’s progress to. He also said that his chest x-ray was starting to look better, so we can only hope that he has made that turn for the better. He may need to be on the vent for another week or so, but I’ll take that if it means that Gary will overcome this really bad hiccup in his health.
Probably one of the highlights of my day was getting an email with this pic:
This is a pic of the “blood bank” created at the company that Gary works for (Ultimate Software). As soon as they heard that his platelets were low and that you could donate in his name they jumped at getting the blood mobile to come out and they created stations in a conference room for people to donate their platelets for Gary. There were apparently a number of individuals that were not eligible to donate platelets so they ended up getting the actual van out so that they could at least donate whole blood. Even though Gary doesn’t need whole blood they could always strip platelets from that or just give it to someone that does need whole blood. Regardless it was the most amazing email to see come in. As soon as I got it I told Gary about it. I can’t wait to show him the pic. He is NOT going to believe it one bit, but we’ve got proof 
I wanted to thank all of the visitors we’ve had, those that have come to either bring me food or take me out of the hospital to get food, those that have sent me emails and those that just follow my blog for the Gary updates. It is amazing to know that we have soooooooooo many people pulling for him. I know he doesn’t expect in a million years the number of people that are rooting for him to pull through this, but it is the most touching thing ever. I cannot wait to tell him about all of this, he is going to be floored! 
He’s still kickin
Last night I was so beat that I chose to not turn my laptop on to type up a blog post regarding how Gary did yesterday. So sorry if you’ve been waiting for an update. He’s still holding on!
Last night he maintained an oxygen level in the 90s and this morning I came in seeing it start at 98 and even go to 100 a few times
Because he’s doing so well they started reducing his oxygen saturation. Within an hour he went from 100 to 75% and his oxygen levels are still in the 90s!
Clearly Gary is one hell of a fighter!!!
And the rollercoaster begins
Yesterday was a good day so that means by default today would be a bad day right? Right! It started off with me arriving and being told that they want to paralyze Gary so that the machine will take over all of his breathing because even with being sooooooo sedated he was still fighting the machine. Then I noticed his hands were swelling and I couldn’t get his wedding band off. Which meant the inevitable. They had to cut the wedding band that I placed on his hand 5 years ago off. Thankfully I wasn’t in the room when they did it but just knowing they had to do it brought me to tears.
I also broke down when his phone rang and it was his oncologist’s secretary calling to remind him of tomorrow’s appointment. Sadly he would not be there. I started crying because instead he is in icu fighting for his life. Something NO one expected. We did get a bit of good news today. His ommaya tap came back clear for infection AND lymphoma. So the delusions were not caused by anything in his CSF. Also his kidney doc was happy to see some of his numbers go down. They are practically normal, he just now needs to pick up his urination.
Right now we are living hour to hour, day to day. As his current oncologist said today, the hardest part of pneumonia in a cancer patient is the first 48 hours because that’s when its the most critical. He said that if he’s talking to me again in 72 hours that means Gary is improving. I sure hope I get to see him on Thursday.
More importantly tonight I hope for NO phone calls. I haven’t had any yet but the time when I’m at home scares me to death because its the only time I’m away from Gary. I would never forgive myself if something were to happen to him if I was away. I know he understands that I need to go home and rest. I wouldn’t expect him to stay all day and night at the hospital if the roles were reversed, but still, you have that guilt.
Till tomorrow!
A somewhat good day
Today started off with a bit of good news, at least from my point of view, Gary’s wonderful nurse was at his bedside and I happened to ask him if Gary has produced any urine yet and he said no. He pulled out his fancy shmancy bladder ultrasound wand and started scanning his bladder. Well low and behold he had urine in his bladder. So he had me step out so that he could put a catheter in. As soon as it was in out came a bunch of urine. Apparently not quite as much as they expected but in my eyes, urine meant that the kidneys were working which is a GOOD thing.
I’ll spare the details from doctors and the Negative Nancy’s they tend to be. One of the doctor’s that he has is this wonderful oncologist. He’s not Gary’s regular oncologist but I like him. Today he tapped Gary’s ommaya reservoir to check for an infection in his CSF or a recurrence of lymphoma in his CSF which could be causing those delusions. Obviously we are hoping for neither to happen. We should know more tomorrow.
The nephrologist, also another GREAT doc, came in the afternoon to tell me that they wanted to do continuous dialysis. Even though he is producing some urine he still has a lot of toxins in his body and they need to get them out. I of course agreed with that, honestly I’ll agree with ANYTHING that makes my husband come home sooner. They got started with that early this evening.
Before I left for dinner his heart rate was in the 90s and his oxygen levels were in the high 80s and low 90s. I was happy with that. After dinner I was surprised to see his heartrate go down to the 80s. The nurse said anything between 70 and 100 is good. So he’s doing great in that aspect. He clearly is responding to me even though he is VERY sedated. When I talk to him his heartrate drops a little and he clearly relaxes. That alone makes me so happy to know that I have such a positive impact on him just means the world to me.
I hope today was the beginning of more days of improvement, but I’m not stupid to know that when it comes to something like this it can easily become very roller-coaster like.
This one is for you sweetie (sorry if you see me writing this every night)…….
My Husband….I love Him!
“My Wife…I Love Her”
I thought yesterday was rough but I was wrong. Today was definitely a lot rougher on me. It was an emotional rollercoaster and quite frankly I’m already over that. I started off the day being able to communicate with Gary. He clearly knew who I was he just wasn’t sure if I was real. He had so many doctors and nurses come in. I had to give consent to do so many things. They had to put a central line into his neck. Good thing he has had one before with chemo so I knew what it would look like. They ended up having to sedate him because he was fighting them which of course caused his oxygen levels to go down. There were times when he was so calm and then times when he’s be yelling or talking nonsense. At one point he was convinced he was talking and seeing his oncologist (Dr. P) but the doc wasn’t in the hospital at all. It was horrifying to see him like this. It was 1000x worse than yesterday.
His delusions got the best of him. It got him intubated (not sure if I’m spelling that right). I was in his room with my fabulous friend, Mel, and he started to get up and take off his leads and his mask and was getting ready to leave. We couldn’t convince him to relax and had to get the nurses to get him back. We got out of his room and waited outside. I peeked into his room and saw one of his nurses holding him so that he could breathe. It was horrible but then I heard the last words that came from his mouth “My Wife I Love Her”. I started crying and was so glad Mel was there with me. We went back to the waiting room. A few minutes later heard over the loudspeaker an alert calling to his room and I jumped up and started walking back and one of the nurses found me and got my permission to intubate him. Of course I willingly let them do whatever they needed to do to help him out.
I’ll admit like I did to everyone that called or was able to stop by the hospital to be by my side today that seeing him intubated was HARD but it was so much easier on me that seeing him delusional and fighting and declining. Around 6pm they started his first dialysis which lasted 2.5 hours. He did GREAT. Of course we won’t know how well until they run his labs in the morning. But I’m a numbers girl like he’s a numbers guy and his heartrate and oxygen levels were both staying down the entire time he was on dialysis and to me that’s a good thing.
After they were done with dialysis and the room was somewhat cleared out. I went back in the room with his mom and walked up next to him and had my hand on his shoulder. I started talking to him and his heartrate went from the 120s to around 108 which to me is FANTASTIC. As soon as I let go it went right back up to the 120s. So he clearly was responding to my voice and touch. So of course I put my hand back to comfort him. I told him to keep fighting. He’s done so well while on chemo that this is nothing. He’s in fabulous hands with some fantastic nurses and he’s got the medicine he needs. I gave him a big kiss from me and Mikey even if it was through a paper mask. I told him I’d be back first thing in the morning and that I loved him which was the most important.
At this point no call tonight is a GOOD thing. I thank all of our friends and family members that are out there thinking and praying for us. We appreciate it and it means the world to us to know that we have such a great support system. This is a hard time for us right now and its just another bump in the road. For some reason we’ve got another test, as if our love hasn’t been tested enough.
My husband….I love Him!
The Christmas we rather forget
I’m posting this late on what now is the day after Christmas because I’m in the middle of cleaning up my house so that it isn’t a disaster. This has been probably one of the worst days of my life so far and since I can’t sleep right now I figured I’d come on here to post a not so good update on Gary.
This hasn’t been the easiest week for Gary. He started off the week feeling like utter crap, ended up unable to get out of bed to eat, drink, or even go to the bathroom at all on Monday. On Tuesday he was able to get out of bed but was only able to really drink and didn’t go to the bathroom much again. By then I knew he was getting very dehydrated, but he told me that he promised he’d drink a lot so that he didn’t have to go to the cancer center for fluids. I should have known better. On Wednesday he was doing better and was eating a little and drinking a lot but he was hardly peeing. Yesterday he was GREAT, so great that we were able to go to a Xmas Eve party and I had to drag him home because he was Mr. Social Butterfly.
That brings us to this morning. He woke up at 5am coughing badly. He has had a dry cough for a few days and it usually gets bad at night. Well he sat up on his side of the bed and touched my arm and then started talking about this great baker and their bread that was REALLY good. I was laughing in my pillow because it was too funny, I thought he was dreaming. He went back to bed and was up an hour later coughing and once again talking, but this time about some nonsense about fixing something which I can only assume was related to work. I once again thought he was talking in his sleep, but I later learned that he was wide awake.
We woke up, did presents which was VERY difficult for him to do. Before we knew it, it was 11am and he hadn’t eaten. He went shower while I made lunch. This is when things made a turn for the worse. He came out of the shower drenched in sweat, he sat down to attempt to eat and the salad bowl sat on his lap while he went in and out of sleep. Every time he came out he’d start telling me about something that made NO sense at all. It got to the point where he was telling me about joining something that had a lifetime membership and he really believed what they were all about and it was a good fit for us but it wasn’t a cult it was truly something good. He REALLY believed this and at that point everything that was funny started to make me cry because my husband was clearly not himself. I picked up the phone and called a friend who insisted that I call his doctor. I told the doc what was going on and she recommended I take him to the ER because she thought he might just be dehydrated.
When we got to the ER Gary was unable to fill out a simple form that asked simple questions like his date of birth, age, phone number. He got it right after really thinking about it. He was unable to quickly answer questions, he’d give a long explanation for something that could have been answered really quickly. He was quickly taken to triage and then quickly taken to a room in the ER. The nursing staff quickly came in to start tests and we ended up with a diagnosis of pneumonia and the beginning of kidney failure.
His heart rate has been around the 120s and he had to go on oxygen wearing a mask because his oxygen level was so low.
I ended up having to come home since Mikey was with me. I called the hospital not too long ago to see how he was doing and the ER nurse told me that they just took him up to ICU and that it was a rough night for him. After I left he got even more confused to the point where he was trying to take his mask off. He ended up coughing so much that the nurse was having to help him work up a blood clot, all while I was at home and he was all by himself.
So I sit here writing this feeling so awful for my wonderful husband who is all alone at the hospital fighting for his life. I hate cancer with a passion because it has made us go through things that I wish NO one ever has to go through.
If you’ve gotten this far, bless your heart.
Fabulous news from chemoland
If you have been following my blog at all for the past few months you already know that this has been the year from hell for my family. Even though Gary finished his normal chemo regimine back in September he was still getting chemo via the ommaya port in his head to treat his spinal fluid. He has been getting NASTY episodes of dizzy spells and blackouts that causes him to fall after each new dose. To the point where he gets a few days to maybe a week (if he’s lucky) where he actually feels pretty good and then he gets hit by another dose. He had a dose last week and has been having a very VERY difficult time with it. It almost seems like each time he goes through this the symptoms get worse, kinda like they are compounding. We were pretty sure the symptoms were caused by his depocyt treatments and now we are VERY sure it is.
It finally got to the point where this morning he told me he wasn’t sure if he was going to get through 2 more doses of this. As soon as he told me that I picked up the phone and called not only his local oncologist which is soooo awesome and took my call immediately! But I also called his team up at the NIH in Maryland. His local doc prescribed more pills of a steroid (dexamethasone) that he has to take for the first 5 days once he gets a new dose. They usally do not like you taking this med for more than 5 days because it can have nasty side effects, one of which is a stroke (there are many more purely unpleasant side effects).
Well he got a call around 11:45am today from the team up at the NIH. All of the bigwigs were conferenced in just as if he was at his very own doctor’s appointment. They decided to stop his chemo which makes last week’s dose his last dose. He will FINALLY get to recover for good!!! Obviously there is risk involved with him stopping it 7 weeks early, but since they are dealing with his brain they just can’t chance things anymore with the severity of his symptoms. So I’m so happy to finally announce after a LONG 7 months of this nightmare that my wonderful husband, that has been SUCH a fabulous fighter, is finally done with chemo.
May he never need any of that nasty stuff ever again!
A recent widow and single mom doing my best to survive on my own.
Last year I told Gary that I'd raise $1k at the 2010 walk, please help me reach my goal. This year Gary is one of the Honored Heroes for the walk so its even extra special to me. :) Just click on the Sponsor Me image to be taken to my fundraising page. Thank you!!!
Help me get to my 1st Half Marathon in Walt Disney World where I will run in memory of Gary :)
