One never ending day

Posted by Sammy on Sep 15th, 2009 | one comment

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.

The reason why I’ll continue to give….

Posted by Sammy on Sep 14th, 2009 | no comments

You might remember that back in July I felt this overwhelming need to do something. I wasn’t sure what it was, but it had to be something GOOD. Well we just so happened to have been at the NIH where Gary was undergoing his brain surgery for his Ommaya and I happened upon a booth right in front of the caferteria for the blood bank. There I learned that my blood type, A -, is not as common as I had thought. At that moment I knew what I had to do. I gave blood!

None of that really hit home until Gary needed blood himself. To think that someone just like me sat in a chair for about 15 minutes to give their blood to help Gary! Well I told Gary that I was going to make this a regular thing because quite honestly, why not! I’ll just make more of it. Giving blood these days is relatively safe and if I can save someone else’s life that’s really the least I can do. You apparently can only donate every 2 months and my 2 month mark has already passed, but I’ve already decided that I will once again give blood next week to commemorate the END of 6 cycles of chemotherapy.

I want to make this a regular thing for as long as I can give it. And more so because this past weekend Gary needed another blood transfusion. It was 3 units of blood, which means that it came from 3 different people (more than likely). Who knows what would have happened to him had he not gotten that blood! I’m extremely thankful to the 3 individuals that gave up their blood and sat in that chair, and probably was a tad lightheaded afterwards, all to help save a person that they do not know. And for this, I will continue to give my blood. It’s the least I can do to say thanks to those individuals and help others that need it the most.

Bye Bye Round Numero 4

Posted by Sammy on Sep 1st, 2009 | no comments

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!