Monday, October 30, 2006

Small Islands

My Mac is making funny noises. I guess I made the mistake of moving it while the fan was running. Now it sounds like there's a cow stuck in there and every time the fan slows down, she mooo's ... odd, now it sounds normal again. I don't get computers. Something goes wrong, you restart it, wait a few minutes and it fixes itself.

Anyway, where was I? Oh, yes - cancer. So, my doctor got the preliminary results of my biopsy back today. Most of the ping-pong ball was made up of inactive infection. At this point we don't know what it is and we may never know. The pathologists will continue to do more tests over the next several weeks and if it comes back positive for something then we'll treat it. But, mixed in with this mass of inactive infection, were small islands of lymphoma. These small islands taken with the growth in my abdomen (I understood him correctly a month ago - the mass HAD grown) are, obviously, a cause for concern. He's talking with my doctor in Omaha about what to do next but I'll probably have to undergo at least two more cycles of chemo before I go to Omaha. It'll be a different cocktail than what I had last summer and probably be in-patient (yeah! I just don't get to stay in the hospital enough!). We'll confirm that over the next couple of days after he talks with Dr Vose but I'll probably start chemo again next week. I guess Arizona is off the hook for now!

Now, if only I could reboot my body ...

Friday, October 27, 2006

Scratches & Dents

Last Wednesday, during my pre-admit for the lung biopsy, the nurse asked me about my previous surgeries. As I talked about them she would mark, on a generic drawing of a man, where my various scars were on my body - sort of like how a Hertz agent records the scratches and dents on a rental car before you can drive it off the lot. So, in that spirit, I thought I'd share two of my latest ...

No word yet on the biopsy results. Looks like it will be Monday --- if then.

Tuesday, October 24, 2006

The Right Lung

I was asleep before I got to the operating room. When I woke up I had two members of the Grand Prairie drama club on each side of me and a catheter in my penis. Could there be anything worse?

The alarm went off just after 4. I hate getting up in the dark, I hate getting up that early. I had hit the snooze button once - I was in no hurry - but Mom and Dad had already gotten up and showered so now it was my turn, I couldn't put it off any longer. I didn't feel nervous (though my stomach told me otherwise) this was just one more thing in an unpleasant routine. I had "checked in" last Wednesday --- I had filled out my paperwork and had blood drawn. So all I had to do now was shower and show up. Baylor opens at 5:00 am, we got there around 5:20 and there were already quite a few people there. I signed in, waited, met with the nurse to double check everything (it's the RIGHT lung) and waited some more. When my name was called Mom, Dad and I followed the nurse into the pre-op room and to my bed. They gave me a gown (designing new ones has to be a Project Runway challenge for the new season) and cap to put on and then I waited some more. First Dr Hebeler's nurse came by then the anesthesiologist. He said he couldn't use my port (since it wasn't big enough for all the medicine they were going to give me) and inserted an IV in my left wrist for the anesthesia. Finally Dr Hebeler showed up --- he wrote his initials on my right hand and told us that the surgery would probably only take an hour or two though it could take three if he couldn't remove the mass microscopically and had to do it manually instead. Then I passed out ....

Dr Hebeler made two incisions on my right side and collapsed my lung. He inserted a camera into one incision and a scope in the other. He located the mass then with the scope grabbed the surrounding lung, pulled it and the mass out in one neat little sack and cut it off from the rest of the lung. In just over an hour's time I was back in the recovery room looking like an octopus --- I had an IV line attached to my left wrist, a morphine port on my right chest, a drainage tube coming out of my lung, EKG lines all over the place, an oxygen line in my nostrils and The Catheter. I stayed in the recovery room for about two hours for observation --- and to be tortured. It's pretty disturbing to wake up to the moans of one patient and the rantings of another --- anesthesia does funny things to people and those two patients probably won't remember any of it!

I spent most of the afternoon napping. You never really get to sleep in a hospital. Last spring was the worst --- I had nurses waking me up every couple of hours changing drips, taking my blood pressure or my temperature. I made it through last night only being woken up three times. Not bad. I wasn't in as much pain as I expected (the morphine drip - which I could use every six minutes - helped). The drainage tube was uncomfortable but not nearly as bad as The Catheter. I couldn't move my legs without thinking I was going to rip something off. Myron came to visit, I watched some TV and listened to my iPod. Just another day in the hospital!

At six am (they never let you sleep late either!) this morning I had a chest x-ray. I was hoping they would wheel me down in my bed (so that I wouldn't have to move. Remember - The Catheter) but they brought a chair instead. So all my friends and I piled into the chair and went down to x-ray to make sure my lung was doing okay. Everyone made it down there fine except for The Catheter - he didn't like traveling much. And, while I was glad to see him go several hours later, his departure wasn't quiet (and that is, I'm sure, the closest I will ever get to the experience of child birth).

Dr Hebeler came in to check on me later in the morning. I was doing well and - yeah! - would get to go home today! He was sure the mass wasn't lymphoma (though it could be a burned out lymphoma mass) or lung cancer but stopped short of guessing what else it might be. I'll have to wait for the pathology report to come out on Friday. He gave me breathing exercises to do over the next two weeks and recommended that I not go to Omaha for three weeks (the lung would need that much time to heal before tolerating more chemo).

So, now it's back to the waiting game ...

Friday, October 20, 2006

The Bad Lung pt 2

Wednesday I had an appointment with Dr Hebeler, a thoracic (chest) surgeon, about doing a second biopsy on the cavity mass in my right lung. He's probably one of the best doctors I've visited with recently. He brought in visual aides (my last CT scan), was familiar with my case, answered my questions in a language I understood and had a good sense of humor (hey, anything helps).

My cavity mass is actually bigger than I thought --- it's about the size of a ping-pong ball! Size is relative, obviously, but when a doctor tells you that the mass in your lung is small you think pea- or marble-sized. Ping-pong is big, I don't care that they've seen bigger. And Dr Hebeler is going to take the whole thing out on Monday. He'll make an incision in my lung, stick a camera inside to place the mass then cut away. He compared the lung to a loaf of bread and he's going to take a slice! He says I'll never miss it! Yeah, okay ...

Friday, October 13, 2006

More, More, More

The more doctors that get involved the more confusing things get ... I thought they were supposed to call me. No, she didn't fax your files to the office. Who ARE you?!

I have an appointment with the thoracic (chest) surgeon, Dr Robert Hebeler (I think he's the first doctor I've seen that has his own web page) on Wednesday.

Thursday, October 12, 2006

The Bad Lung

Monday was the latest big day. Mom and I got up early and headed to Baylor for my lung biopsy or, as those in the business might say, a CT scan assisted fine needle aspiration. After filling out paper work we found my room and hung out until the nurse arrived with more paper work and a gown. Another nurse came in to access my port then hooked me up with some saline to keep me hydrated during the procedure. We saw the doctor next and discussed the biopsy --- he told me that there was a 25% chance of my lung collapsing during the procedure and that I would only be given a local anesthesia and a mild sedative and not knocked out! Just the idea of being awake during a biopsy (or anything surgical) scares me. Surprisingly, it didn't seem to phase me much --- I'd been fairly calm all morning. I guess this cancer thing has gone on so long that I've grown nonchalant about these hospital things (though getting blood drawn is another story! Those techs can be rough!). The orderly came and wheeled me down to the CT room about nine. CT scans are, for those of you that have never had one, 3D X-Rays and a CT scan machine is essentially a gurney that moves through a giant doughnut. I shuffled off the gurney onto the CT table and moved my arms over my head so they could start scanning me. They moved me through the CT scan three times to get the exact location of the mass. Then they realized that the mass was more accessible from my back so it would be better if I lay on my stomach during the scans. So I rolled onto my stomach being careful not to get tangled in my saline and EKG lines. I went through the CT scan three more times then ... the machine went down. I got back on the gurney so that they could wheel me to another room. Well, someone must have kicked the machine (I wonder if it was running Windows XP?) because it came back on about fifteen minutes later and we were able to stay. Back on the table I went. Three more times through the CT scan. Then they washed my back in green disinfectent and marked the spot where they were going to drill. I got a shot to numb my back and my second dose of sedative. Then the doctor told me to take a breath and hold it. He stuck the needle in my back, punctured my lung and pulled out some cells from the cavity mass. I had told him earlier to get as much of the mass as he could (so I could have Dr Vose confirm the diagnosis --- hey, no more misdiagnosis for me!) so he repeated the procedure two more times. The doctor was able to rule out lymphoma right after he performed the biopsy so it had to be some kind of fungal infection. I could expect the preliminary test results later this week --- probably Thursday or Friday.

Today I had an appointment with an infectious disease doctor to go over the results. Unfortunately the test results weren't back yet. I was concerned about seeing the doctor without the test results (I mean really what was the point? - he wouldn't be able to tell me anything) but made the appointment anyway hoping the results would be in at the last minute. They weren't. So anyway, the doctor, who didn't seem to know much about my case (had he even looked at my file before meeting me?) and had to leave during my appointment so that he could call Dr Holmes for a consult, essentially said that the needle biopsy wouldn't give him enough information to make a diagnosis and that I should have another biopsy to pull out more tissue!!! I feel like I've been through all this before! Then he asked if I'd been to California or the dessert. Well, yes I was in Arizona in June to visit my friends John and Randy. Did I do any camping? (Are you kidding?!) No, but I did tour the botanical gardens and visit Flagstaff. Well, it sounds like I may have brought home a fungal souvenir!

So, I don't know exactly what's going to happen next but, as it stands now, I'll get another biopsy, figure out what kind of fungus you get in Arizona, get rid of it, then after it's gone, head up to Omaha for stem cell transplant. It's looking like a white Christmas in Nebraska!!!

Saturday, October 07, 2006

Just One More Thing ...

Sue, Dr Holmes' nurse, called Thursday to say that the testicular sonogram came back clean --- there was nothing there to be concerned about. We talked more about the PET scan report. After my conversation with Dr Holmes on Monday I was under the impression that I had new growth in my abdomen. Luckily, it turns out that I had misunderstood him. She said that those nodes had been there the whole time they just haven't shrunk like the others. That's not much of a surprise --- Dr Vose (my oncologist in Omaha) warned me in June that the tumor wouldn't get much smaller than 2 cm. So, all that's left is to figure out is what's going on in my right lung.

Pathology called yesterday to set up my lung biopsy. Monday morning at 6:30 (AM!) I'll be checking in and getting ready for a needle biopsy. The doctor will pull some samples from the mass to determine what it is then we'll get working on getting rid of it.

Wednesday, October 04, 2006


Today I had my fourth testicular exam. It was pretty uneventful. The same tech did the sonogram last January. Surprisingly, because techs usually don't reveal anything, he wondered why we were doing this exam --- he didn't see any masses or anything unusual. When I mentioned that the PET scan showed an "uptake" in my testicles he gave me a blank sort of look and admitted that he didn't know what that meant. I thought all these medical types spoke the same language. I guess not. It doesn't really matter though --- I'll find out from Holmes tomorrow.

Monday, October 02, 2006

Happy Anniversary!

I'm just numb. I've gone through all the emotions ... all that's left is numb. Maybe I just can't handle the lack of good news.

Friday was all about the food. I had a pina colada contrast for breakfast, a PET scan then a trip to the State Fair. It was a beautiful day. The sun was out, there was a nice breeze. It was a good distraction --- Friday was the one year anniversary of my diagnosis. I didn't really think about it much though the last time I was at the Fair I was in incredible amounts of pain. This year I just wore myself out on cinnamon rolls, corney dogs and tornado tators. The whole anniversary thing didn't really hit until today.

I always know something serious is wrong when my doctor calls. Dr Vasquez called a year ago to tell me that the CAT scan showed a large growth in my abdomen. Dr Einhorn called to say I'd been misdiagnosed. Well, Dr Holmes just called. The PET scan showed new growth in my lungs, some of the nodes in my abdomen are bigger and, to top it all off, there's an "uptake" in my testicles that the radiologist thinks is unusual. And, while we don't know yet what it all means, the fact that Dr Holmes called has to mean it can't be good. So, it's back for more tests. Sue will call tomorrow to set up a sonogram to check out my testicles, Dr Holmes will talk with Dr Black about my lung and he'll talk with Dr Vose about the nodes. Doesn't look like I'll be going to Omaha this week after all.