A fabulous family vacation

Posted by Sammy on Oct 28th, 2009 | no comments

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.

A curveball of sorts

Posted by Sammy on Sep 25th, 2009 | one comment

Today started off pretty uneventful which for us is not too shabby. We got up, headed downstairs to the free breakfast our hotel offers, went back to our room and got ready for what would be a long first day at NIH. Gary had labwork at phlebotomy that took what seemed like 45 minutes to do. Then we headed up to clinic and waited another 45 minutes when Gary had to head downstairs for his CT scan of his chest to rule out a fugal infection. He came back upstairs within half an hour and then we waited another 45 minutes to get called back. Oh yeah as we were walking to our room Gary’s legs gave way again, just like the plane ordeal! That was fun, at least a doc was there with us.

Then he talked to the fellow and he left the room after about 20 minutes with us and went to get the team. I know I didn’t expect to hear what came out of the doctor’s mouth and I’m pretty sure Gary didn’t expect it either. The doctor basically gave Gary an out. He told him that usually after round 4 most patients are in remission and he didn’t seem too hopeful that rounds #5 or 6 would make that happen. Gary didn’t have to think long and hard on the choice he was given. He did what I would have done and that is to keep fighting the fight. He went into this knowing it was 6 rounds and here we are for round #6 so as long as he’s healthy enough to do it then why not give it a chance? Plus if he had decided to stop then he’d have to live with that guilt for the rest of his life, that “what if”. I know I couldn’t live with that hanging over my head day in and day out if I were in his shoes.

So he’s at the NIH getting another blood transfusion, yup he needs MORE blood, and he’ll officially start round #6 early tomorrow morning. We don’t know what lies ahead after this. All we know is that he’ll come back up to DC for tests in 3 weeks, but that’s it.

Never in my life have I felt more afraid. The anxiety of the unknown has been so overwhelming the closer we came to this final round. And I know its not going to get any easier any time soon. So much for having our lives go back to some bit of a normal after all of this.

All I want is for some better news, is that too much to ask for? Am I being too greedy to hope that he’d be cancer free in both his spinal fluid AND blood? All I do know is that I will cherish each day like it is my last. Not his last, my last. Cancer is an ugly ugly disease and I hope that one day a cure is created so that so many others don’t have to go through the pain and heartache that our family has had to go through.

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.

Possibly AWESOME news

Posted by Sammy on Aug 25th, 2009 | no comments

Last Tuesday before we came home from DC, Gary had his spinal fluid retested. According to the research nurse they usually hear something within a day. By Friday morning still no word, so no news is good news right? Well RIGHT. By Friday afternoon we found out that the pathologists were having such a hard time spotting lymphoma in his spinal fluid. It is still possible that there is very very very little in there but Gary is pretty damn close to being cancer free in his spinal fluid which is HUGE news. Yeah its only one specific part of his body but we’ll take whatever good news we can get at this point. Now we wait for his blood to be retested at the beginning of the next trip. Hopefully they’ll have just as difficult of a time finding lymphoma in that too. *Crossing fingers and toes*