Fabulous news from chemoland

Posted by Sammy on Dec 11th, 2009 | no comments

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!

Brain Surgery who would’ve thought!!

Posted by Sammy on Jul 7th, 2009 | no comments

This morning I made sure to get here bright and early. Just tied my hair up, changed, and rushed over to his room. Glad that I’m staying at the Safra Family Lodge across the street!!!! The doc was in at 6:40am (so 5 minutes early), he examined Gary again and told him they’d come for him between 7-7:15am. That turned into 8:30am. We got to pre-op and things started happening FAST. Nurses, anesthesiologists, and doctors all coming in one after the other. Around 9:30 they were ready to wheel him to the OR. I took the opportunity to find the waiting room and then head back to the lodge to bathe and then grab breakfast before I came back to wait for him. Around 11am the OR nurse called the waiting room to tell me that they started the surgery at 10:30 and that he was doing GREAT. Fantastic news!!!

Around 11:30 the two neurosurgeons came in to talk to me. Both told me that he did great. Yay! I waited a few minutes and found the recovery room. Just so happen someone was coming out, so I asked her if this was recovery. It was, I found him. But the nurse did not like that I was there. I quickly checked on him and then left back to his room. I found out that they do not want him leaving tomorrow as previously planned. They want to do his first dose of chemo using the new port to make sure its working properly (makes sense but UGH!!!). They are thinking we can go home on Friday, I sure hope so. I REALLY hope so!

Gary had a CT Scan this afternoon to check on the placement of the catheter and to make sure there was no bleeding. He has a few air bubbles in his brain but this is normal. They have him on oxygen which supposedly will help with this. They’ll have to redo the CT scan before we leave because he can’t fly with air bubbles in his brain. As for bleeding he has just some where the site is but nothing in his brain which is great news. He is in GREAT spirits. His appetite is back. He’s on the last 2 drugs of round #2 right now. So he should be disconnected some time tonight!!!!

We are hoping that this is our turning point. From here on out everything will just be getting better and better.

Oh and I have to just say WOOOOOHOOOO because this morning the doc came in and told him that his platelets were 202 as of yesterday. Ummmm this may not mean jack to any of you readers but to us this is FAN-FREAKING-TASTIC news. Low platelets are usually around the 140s, his have been at that or lower for the last 2 years. So for it to be in the 200′s. Holy SHIT! That’s just beyond awesome. So if that ain’t a sign that this crap is working, then I don’t know what is!!!!

The Low Point

Posted by Sammy on Jul 7th, 2009 | no comments

This trip has been ROUGH for not only Gary but for me. It is VERY difficult to see your husband at his ultimate low point. I have seen him cry more times in just the last few days than I have in the last 10.5 years we’ve been together. Ok the only other time I’ve seen him cry was when our beloved pup, Mozart, passed away last year. That was rough, but man is this rougher. Yesterday morning like every other morning his doctors came in during rounds. I swear I want to take a picture of this soooo bad because its a HUGE group of doctors that cram into your tiny room. It’s very cool and very much like the TV shows you see. Well regardless they flat out said hey you ARE getting the Ommaya Reservoir put in and we will be talking to neurosurgery soon. Ok great, do that. Let’s get this ball rolling. Well a few hours later this short guy with a VERY thick sorta French accent walks in. He’s the neurosurgeon and he looks over Gary. Tells him he has to go down for an MRI, which we later find out ends up changing to a CT scan because he has to have continous chemo, and since he needs his pump the MRI won’t work. No biggie. He goes down for that and the doc comes in and says he’ll see him today (Tuesday) at 6:45am. So you go from you are getting it, possibly on Wednesday to you are getting it bright and early tomorrow morning!

When they first told us about this contraption last time it didn’t seem like it was a huge deal. But man after talking to the neurosurgeon it is a big deal. They have to not only make an incision on his scalp but drill a hole through his skull and work this catheter carefully through the ventricles of his brain to place it just right. This is permanent. There is NO taking it out. So Gary will forever have to tell people he has this contraption in his head for the rest of his life. If that’s not freaky I don’t know what is. Later last night, his wonderful nurse (they are ALL wonderful here) came in and talked to both of us about the contraption. It really helped put us at ease. When the docs come in here they are super frank about things to you. No sugar coating ANYTHING!!!! And seriously sometimes you just want a little dust of sugar to make it a tiny bit better. But she really helped put us as ease.

One Craptastic 4th of July

Posted by Sammy on Jul 4th, 2009 | 3 comments

Happy Birthday America!!!! Who would have thought that we’d be celebrating this wonderful day for our nation in the freaking nation’s capitol of all places. I sure as hell never thought I would. Unfortunately we are a tad too far out of the way to really enjoy ANY of the festivities going on in DC. Who knows maybe we’ll see some fireworks, or maybe not. Wouldn’t be the end of the world if we didn’t really, especially after today. The day started of just pretty crappy all together. Gary was in a GREAT mood this morning, kidding of course. He didn’t get ANY sleep last night, just way too much crap in his head. He was even given Ambien but it didn’t do anything. Before I could even get to his room this morning one of the doctors came in to basically tell him that they were pretty sure he has lymphoma in his spinal fluid too. About an hour after I arrived he came back with another doctor who is apparently a lymphoma guy and they flat out told us that on Monday they’ll be talking to the neurosurgery team and will be scheduling his surgery to implant the ommaya reservoir. Fun times! It’s not as simple of a procedure as I had initially thought. It is a general surgery, requires anesthesia, and a hole drilled through his skull. The doc will place a catheter just right so that it’ll have access to his spinal fluid.

While the docs were here we got to talking about the next steps should none of this work. They said that in about a month or so they’ll put his information into their registry to go ahead and look for bone marrow matches. Since he has NO siblings that is not an option and he’ll have to get a match with a perfect stranger. When the time comes I plan on asking to be tested. I’m not sure if I could even be a match since our blood types aren’t the same, but it can’t hurt to ask. They did tell us if they ended up needing to do that he’d have to be in the hospital for about 3 weeks and then he’d have to stay in the area for about 100 days! But more importantly this option is the possibly fatal option. He could die from a bone marrow transplant. Obviously its not the option we want to run and do. Hopefully we won’t even need to visit that option because it just purely SUCKS!

So today has been just one of those craptastic days. Nothing you can do or say can make it any better.

Cancer just sucks!!!

And so it begins…..again

Posted by Sammy on Jul 3rd, 2009 | one comment

I’m sitting here in Gary’s room as he officially starts round #2. The nurse just came in and started his IV of Siplizumab. This is the drug that caused him to shake violently within an hour last time around. Hopefully he won’t have the same kind of reaction this time. He had his spinal tap the other day and even that went better than last time. He had a minor spinal headache yesterday but it was no where near what it was last time which is GREAT news. We did meet with the doctors yesterday and they basically told us that if the results are negative he will still get a dose of chemo into his spinal canal on day 1 for the next 4 treatments. If it is positive he’ll be getting an Ommaya reservoir put in immediately and they will begin chemo before we leave here.

Here’s to an uneventful chemo session and NO need for the Ommaya!!!!