Wednesday, February 20, 2008

Quick Update…

This week is definitely not turning out how I expected it.
David’s Neuro-Oncologist met with the Tumor Board and after an exhaustive review of David’s current condition they all came up with a new recommendation for a treatment plan.

Since there is actual tumor activity, the surgeon felt that because it’s in such a “prime” location for surgery, they should go in and get any new growth out of there. This way the drugs will be more effective and have to work a lot less. This surgeon is phenomenal and we are blessed to have him in our life. Many nurses have told us that we are very lucky to have him because he is renowned in the field and extremely good. He’s pretty high up there at Froedtert and I guess having him solely handling one’s surgery is quite impressive. He’s grown quite attached to David in the last year and we know he will do everything in his power to kick this thing. So, if he says we need to do surgery. We trust him.

Also, David’s Radiologist got in on it too. I have no clue how many people were at this meeting discussing David…but it sounds like a quite a few. But the Radiologist wants to use the balloon. I don’t have too many specifics on this yet. But I do know David has wanted this since he was first diagnosed. I don’t think the first hospital offered it because it was such a new treatment and during his last surgery in June of 2006 this particular surgery wasn’t conducive to the balloon. But things have changed and it’s becoming more mainstream and they feel it will work extremely effectively on this tumor. The basic gist of it is that they will insert a balloon in the hole where the tumor was and insert radioactive seeds into it. This is very exciting since when he was first diagnosed they said he would only be able to undergo radiation once. Since irradiating the head is not a good thing. His first radiation a year and a half ago was pinpointed…but it still got swaths of his head. Now that they can go in and target a very specific and small spot, he can have a 2nd radiation treatment without as much concern for his brain and what these treatments will do to it. I have no clue if he will then begin the snazzy chemo I discussed in my last blog or not, so I guess we’ll all just have to wait to find out more specifics.

We go in Tuesday to meet with our Neuro-Surgeon to discuss the game plan so to speak and set up the surgery date. I was not expecting this and I’ve had some major freak out moments today. But we’ll get through this like we get through all the other crap we’ve been through. I wouldn’t say David is excited about this latest development, but he’s happy about the current “Plan.” He’s always thought this balloon thing would be good for him and we both have really good feelings about this new Chemo treatment.

Unfortunately we know the drill when it comes to these surgeries. Dave is getting mentally prepared and when he gets in the “zone” he comes at thing head on and he kicks ass. He always does extremely well in these surgeries and tends to recover at a surprisingly rapid pace. And when he gets his mental state ready, fired up and optimistic like he is now, he does phenomenal. I’m trying to get there…but I’m not quite there yet. I have every confidence that he will sail through this surgery and the new treatment plan. It’s just really hard when Dave goes under. The waiting while he’s in surgery, the days watching him sleep in the ICU and the following periods of uncertainty are hell. So…I shall take a deep breath and try to calm myself before the ensuing storm.

Tuesday, February 19, 2008

What I Wouldn't Give...

What I wouldn’t give to have a blog posting that doesn’t involve tumors, Cancer or the Big “D.” Unfortunately, I won’t be getting my wish today. David went in for his regularly scheduled MRI and there was a change on the scan. There isn’t a big nasty tumor there…but there is tumor activity. Meaning tumor cell growth. The Neuro-Oncologist doesn’t feel it’s even large enough to warrant surgery, but it does mean that Dave needs to begin a different treatment.

We’re trying to look at this optimistically, although a part of me is devastated. The current treatment he’s been on has been hell on his body. He’s had more than 7 hospitalizations since last June’s surgery and he really hasn’t been the same since. This current treatment hammered his immune system and made it almost impossible for him to combat the C-diff as well and the numerous other bacteria’s and infections that I never got a chance to blog about. So, although it may have been extremely effective at killing Cancer…it was destroying his immune system and intern his body in the process. And he’s been taken off this particular chemo 3 times in the last 7 months just so his body could recover a little. So, unfortunately it’s not altogether surprising that there is a little activity because he has had weeks off the treatments which gave his body a break…but also gave those pesky little Cancer cells the breather they too needed to flourish.

Our Doctor was already formulating a plan after the last hospitalization when it became apparent that the meds were doing a number on his immune system and his body couldn’t afford another bout of C-diff and the ensuing hospitalization. So, he had already discussed David’s case with a bevy of people somewhere out east and he even spoke with the Grand Pooh Ba of the current trial he’s on and other big names in the field to discuss the next steps in David’s treatment. And the consensus was a popular treatment for GBM’s and patients are responding extremely well to it. So well that not only is it keeping that nasty tumor at bay…it is actually shrinking them…which until recently was unheard of. Hell, this drug wasn’t even an option or widely used 1 ½ years ago when David was first diagnosed. And now it is considered one of the most effective treatments for these nasty little bastards.

It will be a big change for us…but this may very well be the treatment we’ve been waiting for. It’s not as debilitating to the immune system as the previous two chemos have been. It will be taken via IV every other week. This will be a new experience for David since previously, it’s always been by pill.

So. I feel like we’ve both been struck down again. Sometimes I feel like we just keep stepping into the ring only to get one hell of a beating. We fall down and then get up again. It seems almost masochistic sometimes. But the alternative is far worse. If we were to just stay down when we got these beatings. Not get up. Not fight. That would mean game over. And that’s not an option for either of us. So, we pick ourselves up again. Lately staggering and not holding our heads quite so high. But we stand up and brush ourselves off and get back into that damn ring. We fight. This is a battle neither of us are about the loose. Yeah, sometimes we’ll sit on the floor and just cry for a while but eventually we do get up and head right on back out there. Some days I don’t know how we do it. Its funny…I get asked that all of the time, “How do you do it?” and honestly I haven’t a clue. All I know is that giving up isn’t an option and no matter how beaten up and bruised we are…we’ll get up. Because someday they’re going to ring that damn bell and not only will this round be over. So will this deadly game. And when it does. We’ll both be there. Together. Holding each other up and smiling.

Friday, February 01, 2008

Brighter Days Ahead…

We have had yet another hospitalization under our belt.
On January 17th David received a blood transfusion. His hemoglobin and hematocrit counts were very low. This is not unusual for patients receiving chemo and his Neuro-oncologist decided he needed a packed red-blood cell transfusion. The nurses in the transfusion clinic were amazed that David had been on chemo for over a year and a half and had never received one…but we all know David is not your average bear.

They did a ton of compatibility testing to make sure his body wouldn’t reject it and it took 7 hours once the transfusion began. It was amazing to think that someone at some point donated their blood, which was intern processed and distilled down to just the core red-blood cells where they remained in storage until someone…and in this case David…needed it. It truly was a gift and I never really appreciated just quite how much of a gift it was. Within hours David was looking better and his counts were looking great. We went home but by the next day things were not going well. David began passing copious amounts of blood. It was quite scary. They didn’t think it was related to the infusion...but there were serious concerns that he was bleeding out somewhere and all of those precious packed red-blood cells were being lost.

We ended up in the ER again, which seems to becoming a habit on Friday afternoons. Why is it he always ends up in the ER on a Friday? One of our friends said he cringes every time he receives a call from me on Fridays…because more often that not it’s bad news. David was admitted to the ER immediately because they too were concerned that he bleeding internally somewhere. Once admitted to the hospital and after further testing they decided that he wasn’t bleeding out and they just kept a close watch on him. They think it was the C-diff back once again and reeking havoc on his body. They doubled his heavy duty anti-biotic and within a day noticed a drastic improvement and reduced bleeding. I wonder if the C-diff was ever under control after the initial diagnosis back in October?

But for the first time in 4 months David is actually feeling better. I think we finally have a handle on this and we’re moving forward. It’s been a hellish couple months. It’s hard to believe things could have gotten worse after David’s initial diagnosis…but these bacterial infections have been nasty. They also discovered yeast in his blood during this hospitalization. It was easily treatable but was probably why he had been running low grade fevers for weeks. We were concerned the blood bacteria had returned…but thankfully that’s gone. They’re unsure how the yeast found it’s way into his blood, but the most likely explanation is that with all the antibiotics he’s on…they have killed pretty much everything good and bad in his system. And thus yeast was able grow in his colon or stomach. And then it was absorbed into his body and found it’s way into his blood stream. It was easily treatable and we’re lucky they found it.

So, although all of these hospitalizations have been awful, they did serve a very important purpose. Both the blood bacteria and yeast in his blood might have gone undiagnosed for a long time if he hadn’t been hospitalized and they hadn’t been testing the hell out of his blood to see what was going on with his system from all the other stuff going on. And these would have become much more serious, even life threatening if they hadn’t been discovered.

This has been a reminder to us that things do work out. If not always in the ways you had envisioned. The doctors still can’t believe that David has been up and moving around in the last couple months considering what his body has been going through. His body has basically been having a war going on inside it for months. They're amazed that he was even able to function nominally...seeing as his pulse, heart rate and blood pressure numbers were extremely bad. They kept asking him if he was passing out or feeling lighthead. He felt nothing. Even with the blood bacteria at the stage of developement it was at, they couldn't believe he was up and walking about...let alone still going to work. But that’s my David. He is one hell of a fighter. He keeps fighting and never gives up. He's like the energizer bunny on chemo!

So, although 2008 isn’t starting out as well as we had planned, we're heading in the right direction and brighter days are ahead...