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.

What a trip home!

Posted by Sammy on Aug 10th, 2009 | no comments

We’ve been home for almost two full weeks and poof its almost over. It’s been a ROUGH trip home, not as pleasant as we had hoped it would be.

It started off with a bang too. The first weekend we were home Gary was back at the hospital. He started fainting so after the 3rd fainting spell I started calling doctors and all of them insisted that it was dehydration. He ended up being admitted for a few days, came out doing well but pretty neutropenic.

Speaking of…..he’s been neutropenic a lot longer on this trip because we find out that they upped his chemo on round 3. Apparently he did so well with round 2 that they justified upping his dosage even though he was coming into round 3 with unexplained fevers. I guess what pisses us off the most is the fact that no one told us until this little piece of info slipped. Oooops!

So here we are the Monday before round 4 starts. We leave back to DC this Wednesday. Woopty Freaking Do! I never look forward to going back to DC. I love DC. I think its a great city, but I hate the reason why we have to go up there. I hate having to leave our comfy home to go stay in a hotel for a week. I hate leaving our little Mikey at home, even if he’s safe an sound with grandma. I just want this all to be over. To have our life back to the way it used to be. How silly of me to even think that this is a possibility. Our lives will forever be cancer struck. Yes we’ll get past this but it doesn’t mean cancer will never be on our minds. Gary will forever have to go for follow-ups and we’ll forever be worrying that its back.

How odd to think that our once not-so-simple life is actually EXTREMELY simple compared to what our lives are now. I won’t complain because complaining gets you nowhere. But I will say this, cancer sucks for everyone involved. I cannot imagine what Gary is going through inside. I know I’d handle things way differently than him that’s for sure. We are just different people that handle being sick VERY differently, but I know that I’d hate cancer just the same if I were in his shoes. I would never wish cancer on my worst enemy, that’s how bad it sucks. It breaks my heart to see my once healthy husband wither away in front of me. He’s literally skin and bones now. He’s having a hell of a time with the treatment. If its not dealing with fevers, or migraines, its dealing with a nose that is almost as runny as the faucet in our sink. It’s beyond sad and it hurts me like hell to see him suffer. I want nothing more than to take the pain and uncomfortableness that he’s in away. I guess that’s what any loving spouse would do for their significant other right? I know he’d do it for me in a heartbeat, but I hope he never has to.

He’s fighting for his life and more than ever do I want him to win.

If this wasn’t real before

Posted by Sammy on Jun 16th, 2009 | no comments

Boy is it real now!

Gary’s nurse just came in to go over what will happen tomorrow morning. He’ll get the last two chemo drugs as soon as his 4th EPOCH bag runs out. They’ll start him with Rituxan and once that is finished he’ll get Cytoxan. He should be done around noon tomorrow. They have 3 more blood draws to do and they’ll be doing his vitals several times during those two drugs because he can have a reaction to them.

She went over how he’ll need to take his temperature daily and will be in close contact with the nurses up here at all times. If his temp goes above 100.4 he is to go immediately to the ER. I asked her if this is common and if we should expect an ER visit at some point, and she said yes. It’s not that we’ve done something wrong, its just how his body handles it so yes at some point we will more than likely be going to the ER because he’ll be neutropenic. Good to know!

She went over foods to eat and the injections he’ll need to give himself until the nurses tell him to stop. She also went over hand hygiene and just overall common sense about how he doesn’t need to live in a bubble yet he needs to be aware of his surroundings.

It’s just crazy! I know we’ll get used to this new way of life but WOW, if things haven’t changed yet, they sure will change as soon as we leave that front door on Thursday.