Thursday, May 31, 2007

short chemo today

Today was my day for a second infusion of the gemcitabine. Saw the doctor for a quick check, discussion about how I feel, etc. Not much change over the past few days since the chemo infusion last Thursday. My energy level has been a little lower each day - but nothing significant. So far, still no real painful or really negative side effects. The slight haze or fog throughout my body continues. The infusion today was really only about 30 minutes - close to 90 minutes with all the IV prep and removal. Barely got in a short nap before everything was done. Went in to the office after the infusion - but my energy faded pretty quickly after having started the day so much earlier than usual - had to get to the doctor's office about 7:45. 2PM, I was headed home for a nap.

Oh, Cindy decided that she was going to order from Steak N Shake today. I got a couple steakburgers with everything. Oh my gosh, it was the first time in days, maybe weeks, that I could really truly taste something. I'm not sure it was actually the burger - probably the thick onion, tomato, pickles and other goodies that I tasted. But, it was a good change from the turkey sandwiches that I have been having for a while.

Tuesday, May 29, 2007

OK day

Got out of the house and to work about 10AM today. Not a bad day. Pretty much just caught up on a few things. Nothing unusual. Left work about 2PM. Basically, a pretty uneventful day.

Monday, May 28, 2007


Well, today is somewhat of a so-so day. Slept pretty well last night, and this morning, and late morning. Had a pretty good breakfast and just went back to sleep. Finally, woke up and decided to make a trip to Dick's Sporting Goods to look for something for my bald head. Had some luck and found a couple knit caps and a couple nylon skull caps that are designed to wear under bike/batting helmets. Comfortable and lots more convenient than tying a bandana. Today, for lunch, we had the pulled pork that Jill started in the crockpot yesterday - fabulous. Was like we were in Memphis/Nashville with pulled pork, bbq sauce to dip in, potato salad, and some bread. Great Memorial Day meal.

Re: health, about the same as the last few days. No pains have developed yet from this round of chemo. Still primarily the dull tingling thrughout my body - kinda like a photo out of focus. Everything else about the same. Appetite pretty decent - but I have continued to supplement with Boost just to be sure I am getting good nutrition balance. I am still mostly nibbling and grazing through the day.

Sunday, May 27, 2007

tired but not a bad day

Today is day three after my second chemo. No leg bone pain this time. Have a bit of overall body numbness and feel like I am in a bit of a haze. But, no real pain. Managed to get some laundry done and we went out to get groceries. Doing a few mundane typical life activities makes things seem at least a bit normal. In general, the chemo this time around has mainly been more tiring and I think I have slept quite a bit more. Remaining stuff from my last bout with the last chemo - inside of lips and gums are still not 100% but they are much much better. Nasal linings are finally starting to heal. Most of the dry, peeling skin from the rash has just about finished healing. I am focussing on eating plenty of food - even when I don't actually feel hungry. Lost 6 pounds between first and second chemo. I think I have managed to put on a pound in the last couple days. Closely monitoring temp - no temp so far. Monitoring blood pressure per request of Dr Forkin. I will fax her about 5 or 6 days BP history so that she can make a decision about what to do with my BP med. I have been off the BP med since Thursday when Dr Einhorn asked that I stop and work with Dr Forkin about readjusting the med. BP has been running just slightly high since Saturday.

Jill made sloppy joes for lunch today and has put in a crockpot pork roast for tomorrow. We are hoping to end up with a great pulled pork for sandwiches. I feel a little bad that I didn't have enough energy to really be any help. But, she seems to have managed through it alone. The sloppy joes were great.

Saturday, May 26, 2007

Day 1 after second chemo

After what we hope to be good news during last visit with Dr Einhorn, we are back into the routine of chemo infusions. Chemo was Thursday and it is now Saturday AM. Friday went reasonably well. Only real side effect so far is that I am pretty tired. Napped off and on much of the day. Between naps I emailed Dr E and he gave me the go ahead to get a massage. A new chain place called Massage Envy opened close to us and had a really good deal offer for a first try massage. After checking to be sure that they could handle a somewhat softer massage due to the possibility of bruising from the chemo, decided to give it a go. Great decision. Their facilities are less fancy than the typical spa on the cruise ships, but very adequate and the massage was very good. Clearly she understood the type of massage needed in my health situation. Then, back to napping/lounging around. Friday night, we joined our usual monthly pinochle group and I was able to handle about 3 1/2 hours of cards. It was good to get out. By the end of the night, I was moving a bit slow and was pretty tired; but, it worked out OK. After a good night sleep, I still don't have any onerous side effects. Legs a little fuzzy - but it just means paying attention when I walk and I am walking a little slow. Still feeling slightly weary - but not too bad. Will probably make a "field trip" today and go to the grocery store. And, later this afternoon, we have early dinner reservations with Connie and Jake at Hollyhock Hill. Can't wait for their fabulous chicken dinner. That's all for now.

Friday, May 25, 2007

Second chemo - good news

Well...yesterday I went in for my second round of chemo. First, usual blood & urine tests and a new xrays this morning. Then met with Dr Einhorn. Started with side effects discussion - particularly those that landed me in the hospital. He explained that most of the side effects were caused by the Taxol but some were also impacted by the Carboplatin. Talked about changes in my chemo drugs. Changing the Taxol to Gemcitabine. He feels that it will be equally effective but should result in fewer of the specific side effects that I had. Obviously, Gemcitabine has its own set of side effects - so we'll see how it goes. Also changing the Carboplatin to Platinol - both are platinum-based chemo drugs and accomplish the same thing. But, apparently the Platinol infusion takes a little longer and might negatively impact my white blood count a little less - meaning perhaps less chance for infection and high temps. My BP has continued to run low while on my BP med (just 90/60 on this visit) and Dr E wants me to stop taking the BP med and work with Dr Forkin on a lower dose once I am off and monitor BP for a while with no BP med.

After the various chemo/meds discussions, Dr E moved on to the really good news. The xray seems to have shown very clear progress. He explained and drew pics showing the nature of the cancer spread in my right lung and reiterated that the left lung appears completely clear. He identified one specific tumor that he thinks is the likely primary tumor - though it was still relatively small. On today's xray he said that this primary tumor has faded to being almost transparent. And, the xray shadowing from the other multiple small tumors has reduced considerably since the last xrays. Dr E says that he is now questioning whether we are really limited to the standard approach for stage IV adenocarcinoma. As I said in an earlier blog, stage IV typically means a focus on control and simply trying to extend survival. He now thinks that we need to re-evaluate the possibility of surgical options. I am still quite nervous about that - but surgery being an option is actually a much more optomistic outlook. Surgery might mean that at least some of the tumors might be able to be removed - not just controlled. Obviously, I am trying to avoid letting this cause me to be overly optomistic since it is always possible that it will not come to pass. However, he will consult with the thoracic surgeons around 6/13.

Timeline for now: The new chemo routine included 7 hours of med/chemo infusion yesterday and now includes another short infusion this coming Thursday. Dr E has given us the go-ahead to attend Jill's niece's wedding in the Dominican Repbulic in early June - as long as we could rearrange our plans to get back a little earlier than planned so he can begin other tests and get the surgery consult. Our travel agent was able to make the changes in our plans and we will be coming home a day early. On 6/13, I will get a PET scan. That one is new for me but is apparently yet another step up from a CT and MRI. I think it will also allow them to further determine possible spread to other organs. After the PET scan, Dr E will consult with the thoracic surgeons and other pulmonologists to discuss other more aggressive directions including surgery. 6/14 will be my meeting with Dr E and next chemo infusion.

So far today (day one after chemo), I haven't started any significant side effects other than simple low energy.

Wednesday, May 23, 2007

couple of normal days

Well...the past two days have been kinda normal. Went to the office about four hours yesterday and about six hours today. Skin has been peeling where I had the rash. Inside of lips and gums still just a little sore but not really bad. Otherwise, pretty uneventful days before my next chemo infusion tomorrow.

Monday, May 21, 2007

back to work and catching up on dates

This was the best day in a while. Went into the office for about 6 hours. Good appetite - ate solid food. Head getting a little chilly from being bare. Thought I better catch up on some dates before I can't reconstruct the timeline.

Annual physical Tuesday April 10 - oddly, Dr Forkin and I discussed how healthy I seemed to be again this year.
Call at home from Dr Forkin about chest xray Thurday April 11 about 8:30 PM. Xray every two years was pretty much just routine procedure. Scheduled CT scan for on April 17.
Met Dr Forkin with Jill on Thursday April 19 to learn that things in my right lung looked abnormal. She positioned it as very serious but still could be a variety of things.
Met with Dr Mason Goodman on Friday April 20. Mason confirmed that it looked very questionable.
Friday April 20 went immediately to Methodist Hospital for various blood work in prep for lung biopsy.
Lung biopsy at Methodist Hospital on Tuesday April 24. Actually, relatively simple needle biopsy.
DAY OF CONFIRMED DIAGNOSIS Met with Mason on Thursday April 26 and learned that the biopsy showed that I have adenocarcinoma in my right lung. He advised that he was referring me to Dr Larry Einhorn at the IU Cancer Center.
First meeting with Dr Larry Einhorn on Wednesday May 2 at IU Cancer Center. Dr Einhorn gave us a summary of the situation and discussed various issues involved. He seemed optomistic about our chances of taking the cancer into remission but indicated that at stage IV, surgery and a real cure are not likely. At best, can hope to get it under control and treated as an ongoing chronic condition. Focus will be on survival and extending my life.
Friday, May 4, first chemo treatment

So...this timeline brings everything up to date. The first entry in this blog starts with the first chemo treatment on Friday, May 4.

Sunday, May 20, 2007

art fair, haircut and real food

Today we decided to give a go at attending the Broadripple Art Fair. It was a little tiring - but we made it ok. I needed to sit and rest a while as Jill continued to do booths. But, it was nice to get out into the fresh air for a while. During the morning, my hair started to shed. So, I cut it all off with a little help from Brett. Didn't want to deal with the hair on my pillow, in my mouth, etc. as it came out. Better to just get rid of it all at one time. Also, started to eat a little more real food. Last night I had a couple small bowls of bran flakes - after letting them soak in the milk a little. Today, I started with a donut and I had a lunchmeat sandwich and sliced strawberries for lunch. Banana for a snack. It looks like my mouth is finally to the point that I can bite into somewhat soft things - like sandwich bread. It sure is good to be eating real food again.

Saturday, May 19, 2007

battle and I won

Well... it's been a while since my last post.'s what happened. Friday, May 11, seemed good. Did half-day at work and went out to eat with Connie and Jake in Zionsville. All seemed good with the world. But, Friday night my body started to get funky. Woke up Saturday feeling really crappy. Was pretty much wasted - very weary and without much energy. Didn't do much Saturday except sit around moaning in bed or in my lazyboy. On Sunday, I woke up and felt quite warm. When I discovered blood in my urine, I woke Jill and told her she needed to take me to the hospital. We went to Clarion North and they admitted me within about an hour of my arrival. My temp was 103. BP was only 80/51 and there was the blood in my urine. I was also dehydratede. They started me on IV meds and fluids. I was a pitiful sight to see. All day Sunday my temp never dropped below 102. Finally, on Monday, the temp started to come down, got close to normal a couple times, but always ended up shooting back up to 101 or 102. Also, on Monday (or maybe it was Sunday), I started to develop a rash all over my body - I was very worried that my DH was flaring up badly which would not have been good.

Throughout the process, I was being visited by several docs - including the Medicine doc, an infectious disease specialist and an oncologist. On Wednesday, I was visited by a dermatologist. They had difficulty isolating a clear reason for the persistent temp. That's the reason for the infectious disease specialist. Apparently, the UT infection was insignificant enough that it would not have really caused the type of fever I had. So...they continued to run various tests - blood, urine, xrays, etc. - trying to isolate a cause of the fever. I was on multiple broad spectrum IV antibiotics as they kept testing. The dermatologist determined pretty quickly that the full body rash was definitely not my DH. It was a chemo toxicity induced rash and they gave me prednisone. That has worked and the rash has cleared up gradually over the past few days. In the end, they decided the temp was also caused by chemo toxicity. There are a few more details that I am omitting since this summary gives the overall gist of what has happened.

In an email exchange with Dr. Einhorn, he thinks that is accurate. Since the Taxol seems to have caused my severe leg bone pain, the full body rash and most of the side effects that landed my in the hospital for five days, he plans to shift me to a different chemo treatment. He will change to Taxol to Gemcitabine. And, since they gave me nupegen (sp?) shots in the hospital to boost my white blood cells, he is also adding neulasta to my treatments.

I was released from the hospital on Thursday and decided to stay home Friday to continue to let my body recover. Did run out with Jill to Target - got pretty tired. Today, Saturday, felt well enough to get out and we went in search of tile choices for the entry, half-bath and kitchen backsplash. Feel well enough that we will try to make it to the Broadripple Art Fair tomorrow.

This has certainly been a week of battles with the chemo. I didn't really realize that some side effects would wait to hit me about 9 to 10 days after the chemo. But...we will be more aware of that possibility the next time - next chemo is this upcoming Thursday. But, despite the challenges, we successfully made it through the week. Minor things still remain but we whipped it this time.

Thursday, May 10, 2007


Well... yesterday and today were improvements. Wedn went to office about 8:30 and stayed til about 3:30 - probably just a little too long. Pretty tired when I got home and napped quite a while. About the same today, except that I left the office at 2:30. No real leg bone pain any longer. Some mental fog and legs are a little dull. Everyone at work has been very helpful - getting coffee, fixing my lunch, etc. Finding that I can get in to the office and catch up on almost everything in a short time. Catch up on stuff/rumors/gossip over lunch and leave in the early afternoon. Not a bad gig if you can get it.

Tuesday, May 8, 2007

day four

Well... this was the 4th day since my first chemo. Made it into work for a while - about 9:30 to 3:30. Felt the best since Saturday AM. Not much leg bone pain today - but it has come back just a little tonight. Things went pretty well at work. Obviously, several people stopped by the check on me. But, still able to get caught up on mail, email and stuff. Found that grazing is definitely the best for me right now in terms of eating. When I tried to eat a little too much, it really felt uncomfortable. So...I ended up taking a few bites here and there. Soup was a good choice for lunch since I could basically sip a little every so often. Jill made great chicken cacciatore and I did the best I could. full pretty quickly. Snacked on a couple desserts from Jill's friend Kara through the night. With a little bone pain maybe coming back, I decided to get a blog done before it bothers me - if it does. Last night's leg bone pain was the worst so far. Finally, just took a double-dose of tylenol and it helped me to get to sleep.

So... today was a pretty good day all in all. Hoping for at least as good or even better tomorrow.

Monday, May 7, 2007

sometimes it sucks

Well...last night wasn't much fun. My legs hurt quite a bit all night and kept me awake much of the night. Finally fell asleep in time for Jill to wake me to remind me that I had a head MRI scheduled for 7:30. Barely made it in time. Got back home and went straight back to bed. Finally, up and in the land of the living again. Legs still hurting. Following up with the nurse to see what I can take for the pain.

Sunday afternoon

Well... things got a little rougher this afternoon. First clue was when I fell to the floor when trying to hang up the phone after talking with Julie. Laid there for a while, don't know how long, until I felt like I could get up. Got to my hands and knees and managed to climb back into my chair. Really felt pretty funky for the remainder of the afternoon. Tonight I tried to get into bed, rather than sleeping the night on the family room sofa. Made it to bed but couldn't get to sleep. My legs are really bothering me - kind of a aching. Decided to get up and use the computer for a little while. I had planned to go to work tomorrow, Monday. But, I am now not so sure. Think I will wait to see how my body is reacting.

Sunday, May 6, 2007

first days after chemo

Yesterday was my first day after getting chemo on Friday. Chemo and other meds took 7 1/2 hours - very long day. So far, with the nausea meds, I have been reasonably OK. Took a little time mid-day Saturday to buy a MacBook so that I can deal with internet, games, etc throughout the house. Setting up the wireless wasn't too difficult. Played a little poker until I started to feel a little funky. Slept again in the family room. Restless, coughing, etc - didn't want to keep Jill from sleeping.

I seem to be somewhat OK as long as I am sitting or at least relatively inactive. Lose my energy pretty quickly when I try to do much. Stomach has been a little queezy today - but not too bad. Have tried to keep eating on schedule even though I am actually not hungry. That's what the papers from the doc say to do.

Thursday, May 3, 2007

chemo begins

Well... tomorrow I get my first chemo treatment. Met with Dr. Einhorn on Wednesday. He pretty much confirmed what I had already understood. I have adenocarcinoma in my right lung. Left lung appears clear. The tumors are small but are throughout the right side and some lymph nodes are involved. Will have a head MRI next Monday to determine if the cancer has spread to my brain. He seemed to think that it is unlikely. But, if the cancer has spread to my brain, then other treatment will probably be necessary since the chemo will not work when the brain is involved. Also, Dr. Einhorn indicated that surgery is not a viable option for the stage of my cancer.

I am a little anxious about beginning treatment - but, not as anxious as I would be if they were going to cut me open for surgery. I've watched CSI, NCIS, Crossing Jordan, etc. and was not excited about having my body opened up like that.

We had to cancel our cruise. We were to be boarding tomorrow when I will be getting the chemo. Dr. Einhorn strongly recommended that we not wait to start the chemo in two weeks. Since we want to be very aggressive with treatment, we obviously agreed with him and cancelled the trip.