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 fabulous family vacation
We originally had a Disney trip scheduled for both my birthday weekend and Mikey’s birthday weekend. Got awesome rates so why not go. Well once we learned that Gary’s last chemo treatment would coincide with my birthday weekend we had to cancel that trip. Then during that trip we learned that Gary would need to be back up at the NIH a few days before Mikey’s birthday weekend therefore messing up that trip.
We even had considered having him fly into Orlando instead of Ft. Lauderdale to meet us up at Disney but thankfully we didn’t do that because this last trip, that was just for diagnostics, was REALLY hard on Gary. Before he left he was having these fainting spells and seriously had bruises and cuts all over his body. It was BAD and what made it worse was that he was going on this trip all alone. On that trip he learned that he’s been suffering from sinusitis and they gave him antibiotics and flonase to help.
Now once he was home he wasn’t much better. He had these HORRIBLE headaches that would basically incapacitate him. He got NO relief at all even during his sleep. None of the really good narcotics he had helped. Finally we broke down and went to his local oncologist, Dr. P, to see what’s up. He told him to continue with the antibiotics and flonase (which he wasn’t using religiously). He did order an MRI of his head because he did want to check for inflammation of the lining of his brain due to the depocyt.
So after the doctor’s appointment he miraculously started to feel better. Then last Thursday came when we were supposed to leave for Disney. He was once again incapacitated by those damn headaches. They were so intense that he wasn’t able to move from the same spot on the couch all day long. Finally he was able to get to the car and we decided to go anyways. I was very sure that he would feel better once we left,
And he did. He felt a ton better. He had a few headaches but overall he did FANTASTIC on our mini-vacation. We got him a scooter so that he didn’t have to do the walking and that made all of the difference.
To top it off last Friday as soon as we got back to our room (I tell you I’ll NEVER forget this moment), I took my cell phone out of my bag and put it on the table so I could check my emails before napping. As I had my phone in my hands it rang and it was Megan, the Research Nurse at NIH. I immediately picked up. I knew why she was calling just wasn’t sure if I wanted to hear what she had to say.
I’ll preface this by saying that I didn’t want to hear any results from his restaging before we left because I didn’t want it to ruin our trip. I wanted us to have fun and forget everything that is lymphoma and chemotherapy. Everything! Well what happened next was the most amazing thing probably next to the birth of our son. Megan told me that she didn’t have all of the results back yet but his bone marrow biopsy results came back NEGATIVE for lymphoma. Yup you read that right. N-E-G-A-T-I-V-E!!!!!!!! I got all choked up when she told me and asked her if she was sure and she was.
This has been the best news yet. Yeah it was great the day we found out his spinal fluid was clear but we’ve known something wasn’t quite right with his bone marrow for over 2 years and to know that its NORMAL is beyond fantastic.
So that made our mini-vacation one neither of us will ever forget. We all had a reason to celebrate on that trip.
One never ending day
It’s been awhile since I’ve wanted a day to be over already because it was so just god awful bad. Today was one of those days. Where do I start? Oh yeah last night, Mikey was super cranky because he’s got his last 2 molars cutting through. Let’s just say he’s totally not himself. He wasn’t given any pain meds before bed and I thought for sure he’d wake up in the middle of the night crying. Nope he wasn’t the one to wake me up, it was Gary.
Around 2am Gary woke up with EXCRUCIATING pain in his knees. He described it as a razor like pain, or like getting shot in your knees. However you’d like to describe it, it did not look like fun at all. I called up the nurse at the NIH and she told me to give him oxycodone. We have to be careful with what pain meds he takes right now because he’s neutropenic. But that is one pill we both have and is safe for him to take.
So I gave him 2 pills (the max is 3). Half an hour later the pain was just getting worse and worse. In the past when we’ve gone to the hospital Gary was able to walk but when he told me he wanted to go but couldn’t walk I knew our choices of hospitals would be REALLY limited. Like a good wife, I picked up the phone and called 911 at 2:30. Within 5 minutes we had the paramedics in our house with a stretcher to take Gary out since he absolutely could not walk because the pain was THAT bad.
He got to the hospital and I followed in my car. We were there from about 3am until just before 7am. They gave him demerol which helped his pain immediately. They also did an ultrasound of both legs to make sure he had no clots, and thankfully both legs came up clean. The last time we were in the ultrasound room at a hospital was when I was getting my last ultrasound at 8 months pregnant. Let’s just say its totally different when its your husband laying down.
So the reason for the pain? We aren’t sure, but we *think* its caused by the neupogen shots he has to do daily to help generate his white blood cells. It’s known to cause joint pains in your big joints like your hips and knees. Gary has NEVER reacted like this but I guess never say never right?
Oh so yeah about it never ending….we went home and tried to catch up on our missed sleep. I got up and went to work and Gary texted me telling me he heard back on “THE” results for his spinal fluid and his blood at the NIH. We were hoping the longer the better. Shoot you’d think having more than a week on the blood would give us GREAT news right?
WRONG! Dead wrong! His blood still shows positive for lymphoma. We have no clue if this is working. They couldn’t tell us if they have seen any improvement in his blood. Which royally sucks!
But hey we did get some good news. His spinal fluid is finally cancer free!!!! Take that lymphoma!!!!!
His ommaya treatments are not over. He has 2 more treatments that are 2 weeks apart and then he’ll have 3 treatments once a month. His last treatment will be at the end of January.
So stay tuned, I’m sure I’ll have quite the update next Thursday after we talk to his doc. I’m NOT looking forward to that talk because I just don’t know what lies in store for us.
We’ll be done in 3 weeks!
Yup you heard that right, in exactly 3 weeks Gary will be finishing up chemo. Last Thursday they drew blood to test for lymphoma. It should take about a week to hear back on that, actually we are hoping it takes longer than a week because in this case no news IS good news. The longer it takes the more likely they are having a difficult time finding lymphoma, which is exactly what we want at this point.
I’m sitting here right now as he gets his tap of his CSF and gets his depocyt injection. Hopefully this tap (which of course we want to take as long as possible to come back) will also show that its clear of lymphoma and is no longer suspicious.
Gary finishes his last two drugs today and then we hop on a plane home early tomorrow morning for 2 full weeks! It’s crazy to think that we are really close to being done with this crap. Ok I don’t think we’ll ever really be done with it but it’ll be nice to not have to be traveling every two weeks and for him to have to deal with 5 full days of chemo every 3 weeks.
Oh and good news, not sure if I posted about this but Gary managed to gain 5 lbs since his last trip! That’s awesome progress!!!!
Bye Bye Round Numero 4
As we get ready to take off for yet another trip to DC for what will be round #5 I figured I’d come online and post an update on how this visit home went. I’d also like to post some things that might be helpful to others going through this that we have figured out in the past 4 rounds, this was brought on by a recent comment to one of my previous posts.
Well this trip home has gone a lot better than the past 3 trips home. No visit to the hospital *knock on wood that it doesn’t happen tonight of all night*!!! No fevers!!!! A pretty damn good appetite! We did learn that with his depocyt injection into his ommaya he NEEDS to take a pill called dexamethasone for 5 days or else you are very likely to have headaches, nausea, a slight fever, neck pain, back pain, hmmmm am I missing something? Yeah so Gary had ALL of those side effects. Why? Because no one reminded us to refill his prescription which there were refills on! So major booboo on our part!!!
You might remember that marijuana-like drug that Gary was prescribed to help his appetite. Well the name of that drug is called Dronabinol and also goes by the name of Marinol. Gary only tried those pills a few times while we were still up in DC this last trip but he hasn’t really needed it since because he has had an appetite. I guess all it really takes is having a few doctors get all up in your face telling you that you NEED to either gain or maintain your weight and that you can eat all of the crap you want NOW when you want it 
Some things that he has discovered that he actually enjoys eating/drinking…..Carnation instant breakfast with whole milk and 2 scoops of vanilla ice cream, it makes one fabulous shake according to him. Ok maybe not fabulous, but its pretty good. Another shake mix that he has tried that have something like 600 calories once you mix it with whole milk is called Scandi Shakes. He particularly likes the vanilla flavored shake mixes also mixed with milk and ice cream.
Some of you might remember me and definitely Gary writing about him needing applesauce with his prednisone. Well the reason for this is because he’s taking 200mg of prednisone for the 5 days he is on EPOCH. That’s a HUGE dose compared to what others take. The pills are huge and super chalky as they go down. One of his nurses from his first round actually recommended trying the applesauce to help and it does help most of the time. All he does is jam a pill into the applesauce and he quickly swallows the pill and applesauce before his taste buds can actually detect the prednisone. It works if he’s fast enough and gets enough applesauce to coat it.
Another thing I’d like to share with others is a website his social worker turned me onto since I don’t really have much time go to a support group in person. It’s called The Wellness Community and they have online chat support groups depending on what you are looking for support with. I’ve only been able to participate with 1 group since they happen to meet on Wednesday nights and that corresponds with our travel days. But so far its been a GREAT help.
Alright that’s my update for now, I’m sure I’ll update a time or two while we are up in DC. May round #5 go as breezy as this past one!
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 :)
