Blog about my life and experiences after learning that I have stage IV lung cancer in April, 2007. Includes travel experiences, treatments and status info, as well as other misc comments.
Tuesday, March 31, 2009
just more of the same
Monday, March 30, 2009
the hair is gone
Other side effects are pretty much the same. Feet/ankles are swollen as much as ever. I found some old low hiking boots. They are about the only thing that will even go on my feet right now. At least they are moderately comfortable.
Thrush is now throughout my mouth. Not much really relieves it except cold. After breakfast this morning, I scraped up some of my lemon ices from the freezer - big help. And my homemade lemon ices seem to be pretty darn good.
I was concerned about what to do at work today. This afternoon Melissa got me a big Starbucks blended drink that was kinda like a big blended ice drink. Worked pretty well. I actually don't like Starbucks coffee. But, they have several flavors - so, I may just need to work my way through their different flavors. Had a cinnamon blend today and it wasn't bad. Most importantly, they are quite cold and that helps with the mouth.
Otherwise, I am able to get through quite well. I had an interview this AM with a friend who is writing industry mag articles. Then, interviewed a couple candidates for an opening in SF. Happily, I have been able to hang in and be productive.
Saturday, March 28, 2009
Throat
So...I researched this thrush infection a bit more. Apparently, it is actually a yeast infection that most typically is a baby thing. In adults, it happens when certain types of chemo and other certain med treatments are involved.
This morning, my throat is absolutely miserable. Much like a very sore throat from a cold or such. Very rough when swallowing. So, I take the new meds for a 14 day period. I had expected to forgo the pain meds - I can say this morning that ain't gonna happen. I already popped one of the pain meds. The pain woke me up too early today and I need to get enough sleep.
The better news is that few other side effects are bothering me this morning. I do still have elephants ankles and legs. Still quite funky trying to walk because I don't have the feeling of having my balance with my feet under me. But, it mainly takes a little extra focus on balance - particularly when I stand up from a chair.
We'll need to get out today. I need to re stock on fruit. Gotta find a better blueberry supply. The dinky little containers at Kroger just didn't cut it. I put more blueberries in a bowl of cereal than their little container. That's just not right! I guess maybe back to Sams.
Apparently, we have some storms/rain coming in. So, I guess we'll try to get things done before the weather arrives.
Friday, March 27, 2009
Thrush
Fatigue is a bit more today. Not an overburdening thing. But, enough to notice. Legs and ankles are still quite swollen. Still makes walking a little funky. Not really painful. More a lessened feeling of balance.
Today was a relatively simple day. Met with my advisor from Merrill Lynch - time to review where we are to decide whether to make changes. We pretty much decided to just continue to let things ride as is. Then, to the office for an interview with a candidate for a position we have open in San Francisco. Good candidate. Good lunch. Stuck around for a little while until I decided that I had done everything that needed attention. So...outta there. I headed home for a relaxing weekend.
Thursday, March 26, 2009
day after last treatment
Later, we joined two other couples for a wonderful meal at The Iron Skillet. Great food. Lotsa food. Good company. Good time.
Spent quite a bit of time yesterday buying and installing a new computer for Jill. Minor adjustments and a few questions to be answered - but, it's pretty much set up. Should be lots faster and less frustrating for her. Also, decided to buy myself a toy - got one of those new netbooks - kind of a ultra small laptop. Less than half the size of my Mac laptop. It looks like it will be a good email PC and can do games, video, music, etc while we travel. We'll see...I just felt like a new toy.
So...I better try to get a little more sleep tonight than I have gotten during the past couple weeks.
Tuesday, March 24, 2009
Lung follow up
Appointment today with Dr Einhorn to follow up on the status of my lungs - had chest CT a week or so ago. Basically, the good news is that things are apparently stable. Certainly, the spread to the brain gives cause to pause. However, no real change in the lungs themselves.
As a result, however, of the brain lesions, we will now take a course of action that assumes the possibility of spread elsewhere that is not detectable. In a couple weeks, Dr E will start me on a drug called Tarceva. This particularly second-line treatment has had good success with non-smokers with adenocarcinoma (my specific lung cancer). Based on my good results from the first-line chemo, Dr E expects that this drug will benefit me. It is much easier - just a single pill that I will take daily. He says that it is the kind of thing I can be on for quite a while. Known/expected side effects should be pretty minimal - and are typically controlled with OTC type stuff.
I ask Dr E about the big-time swelling I am getting in my legs and ankles. He indicated that to likely be from the steroids and expects that it will clear up as I wean off the steroids. He said to watch and he would be concerned if the swelling is ever not equal on both sides. So...elephant ankles for me for a while longer. And, it sure does slow me down since standing up gives me the feeling that I am not necessary sure-footed. Just forces me to slow down a little.
Of course, I have my 9th radiation treatment this afternoon. But...given how routine that has become, I probably won't bother with another post just to say same-old-same-old.
Monday, March 23, 2009
treatment # 8
Today, I finally got my cherry pie. We went to Shapiro's. Great meal.
Will need to try to actually get to bed tonight since I see Dr Einhorn in the morning. I guess we'll see how that works.
Saturday, March 21, 2009
Saturday - no treatment
As usual, pretty much no real side effects from the radiation. Since I won't have another treatment today or tomorrow, I'm assuming that all will be uneventful for a couple days.
The really good news is that Julie and Penny got home last night. I am so glad that she decided to come visit. We chatted for quite a while last night. And, this morning we all headed out for Dunkin Donuts - hmmm. She and Jill have headed out for a few errands - so, I get to vegitate for a bit. I'm hoping that we'll get a chance for a nice lunch somewhere today.
My plan for the rest of today is to just sit around - might watch a little basketball or a movie or just do nothing. So...I figured I'd get my update done and space out. So...that's all for today.
Friday, March 20, 2009
7th radiation & saw doc
Today was my 7th radiation treatment. 3 more to go for this first round. This post will have lots of info.
Of course, the treatment was pretty much the same as the others. After the treatment, I met with Dr Henderson. We reviewed that I have mostly had little or no side effects so far. So...we went into discussion about where we go from here.
Beginning TODAY, Dr H has adjusted my steroids to start tapering off over about a 3 week period. I can't wait. I get to skip the last dose tonight!
When I finish the 10 treatments next week, will go for the first month mainly monitoring the healing process. Apparently, they really can't properly judge progress until enough healing has happened - so we wait. I will watch for any side effects during the healing and advise Dr H if anything comes up.
After this first month, will get an MRI to see the progress of the radiation. If any larger lesions remain, Dr H would target them with more focused radiation directly at the lesion.
Then, I will get a head MRI about every 4 months to monitor things. I will also need to monitor specific types of symptoms - which, if they occur, would dictate an immediate MRI. This ongoing monitoring will continue in tandem as Dr Einhorn will continue to deal with my lungs.
I see Dr E on Tuesday of next week to discuss status of my lungs and whether we need to begin any treatment for the lungs. He is waiting for the radiation treatment before doing anything further for the lungs. While I was with Dr H today, he sneaked a glance at my lung CT and said he didn't see any unusual comments re the lungs. I guess we'll see what Dr E says. Maybe I don't need to start anything for the lungs right now.
Thursday, March 19, 2009
Thursday
Ice cream
Of course, still had some chicken tettrazzini (sp?) when I got home - Jill's homemade casserole. Fabulous. And, then grapes, then tea with cookies... With these steroids, I might be unable to taste everything; but, it seems like the appetite just keeps coming. And I must take the steroids with food - so, I guess I just gotta eat.
Treatment was very uneventful today check in, waiting room, take me back, put on the mask, radiate me and out. All in about 10 to 15 minutes.
Now...let's see if I can manage to get any sleep tonight.
Wednesday, March 18, 2009
McD's
Decided to stop by for a nice McD's breakfast this morning. I love their breakfast - egg mcmuffin, breakfast burrito, coffee, juice and that fake potato thing.. But, it finally occurred to me this morning - I can't really taste the OJ. I love OJ but it tastes like slightly flavored water. Happened last night at home but it didn't occur to me that the radiation has effected my tastes. Can't taste the sugar in the coffee - guess I'll need 6 or 7 more sugars!! OK...I can deal with side effects - but this sucks! I gotta taste my stuff. I guess ya can't have it all. The doc did tell me that tastes might be effected.
Tuesday, March 17, 2009
another day, another treatment
Nothing else really new. My energy level seems to be maintaining with the reduced pain in my feet. But...didn't sleep worth a damn last night. Even after taking an Ambien, I finally got to sleep around 4AM. But, it doesn't seem to be hampering me - so, I guess I'll just live with it.
No new side effects from the radiation yet. Hair is still here - meaning what's left is still here. Have been were the new hat that I got. Got a few positive "love the new hat" comments today :-)
Monday, March 16, 2009
Pic
No significant update today. Easy, quick treatment. No changes. So...here's a pic of me in the mask.
Sunday, March 15, 2009
Good news Sunday!
Well...the best news today is that my feet are actually feeling a little better. Even after a day filled with running errands, the pain seems to be less. I had expected to be really beat after the day on my feet - not so!! The increase in the gabapentin dose recommended by Dr Forkin seems to perhaps be helping. It is such a relief. Having my feet hurt all day and with every step is a real energy-drainer.
So, I feel quite good today. And, it wasn't from a good night sleep - cuz I slept very little last night. Gonna need to take an ambien tonight. Can't be awake until 6AM and expect to get enough sleep. Jill seems to think it might be the steroids - which are also giving my chest/stomach pains. Last night Dr Henderson recommended that I get Zantac or Prilosec - which I picked up this morning.
I plan to drive tomorrow. It is a bit early from the doc recommendation. But, I'm tired of being chauffeured. It has been 3 weeks since I passed out on the ship and my cough is signigicantly reduced. I just don't think it is an issue.
So...kinda back to the normal schedule tomorrow - with the exception of the radiation treatments in the afternoon.
Saturday, March 14, 2009
Saturday w/ no treatment
Well...no treatment today. We decided to run errands. Started at Sam's. Got some batteries, lots of fruit for me, magazines for Jill. Then we headed to Home Goods. Of course, Jill found a few Easter items. Then, Marshalls where I found some socks and Jill got some sheets. Off to Cracker Barrel for lunch/brunch. I had eggs, biscuits/gravy and decided to try grits. Loved 'em with butter and sugar. Then, headed to pick up some groceries. After all that, we were plenty tired and kinda sat back to do not much else. It felt good to get lots of little things done today. Have been a bit lazy since I got the latest news.
Well, that ended when Connie called. Today is Jake's bday and we decided to go out to Monical's for his dinner. Just got home. Great very thin crust pizza. Good deal on a big one - so I have leftovers for tomorrow - or tonight.
Pretty much about the same side effects stuff today. The soreness at the top of my jaw is a little less today - more a stiffness than sore. Hearing seems to be dulling a little - as the doc indicated it might. Had a bit of pressure in my head when I cough. I suppose that is from the expected swelling that the steroids are to help control.
Getting some pain in my chest - similar to the same pains Jill had when she was on some steroids. When she had the pains, it was diagnosed as severe indigestion. Doc said that these steroids were pretty strong - so, I'll try to do what I can to endure. Trying antacids tonight to see if they help.
I noticed today that my feet seem to actually be hurting a little less. Not sure if it's lack of activity or benefit from the Gabapentin. I guess we'll see after I was on my feet so much today. Sure would be nice to have some of the foot pain reduce.
Have been sleeping pretty well. Woke up quite often last night. Quite thirsty. Sure glad we got the small refrig for water upstairs. My mouth seems to be getting very dry real often.
Worked on the Rome cruise a little today. I think I've got a hotel selected. We'll be staying in Rome four days before we board the ship for the cruise.
Friday, March 13, 2009
2nd radiation
Today was my second radiation treatment. Pretty much uneventful. Stayed home this AM so Jill could get some things done. Treatment was at 3PM. Arrived a little early -they took me in at 3. Initially, the techs had a question about the fit of the mask. So...they waited just a few minutes for a doc to check the mask. After he indicated that the fit was good, they proceeded with the treatment - which actually only took minutes. I was out of the hospital in about 20 minutes
Next, I get daily treatments M-F next week and M-W the next week. Only side effect so far has been a bit of soreness/tenderness at the top of my jaw - both sides, just behind the ears. It hurts to the touch, when I bite and when I cough. Otherwise no other side effects yet.
A little tired this afternoon - but I think it is more from not sleeping well the past couple nights. Could have slept quite a bit longer this morning - but Beth was scheduled to clean and I didn't want to be laying around in bed when she showed up. Will probably sleep in tomorrow.
Side effects
Side effects from first radiation not too bad so far. The areas behind my ears at the top edge of my jaw are sore on both sides. The doc said that there would be fluid buildup in that area. But, so far, it is more tender/sore. Hurts to chew and cough.
Haven't had enough radiation to feel any skin tenderness or sunburn on my scalp. Only fatigue so far is probably more from not sleeping well. Will try to nap today.
Next treatment is this afternoon. Process should be pretty simple. I have an ID card and will just check myself in when I get there and go straight to a special waiting room. They say that the actual treatment time will be quite short.
It looks like I have been able to work out rides for work most days of my treatment starting next week. If all works out, I will go into the office for a few hours in the morning. Jill will pick me up at the office and take me to the treatment. Hopefully, we can all make it happen for the 1 1/2 weeks to go.
Thursday, March 12, 2009
First radiation treatment
Well...that was pretty simple. Shortly after I got to the treatment center in the IU Cancer Pavilion, they took me back to a treatment room. I laid on a table and they put on the mask.
Since this was the first treatment, they took a few regular Xrays for the doc to review. He checked to be sure that the mask covered as it should. After that, they followed with the radiation treatment. It really wasn't much different from the Xrays. Slight light flash in my peripheral vision. No pain or sensation of any kind. Couple minutes and done. The prep time and other misc stuff takes longer than the treatment. Sure is very different from the hours of chemo.
I'm a little tired. But, I think that's more from not sleeping real well last night. Maybe a little jitters about the treatment. Apparently, the side effects start slowly as the radiation begins to accumulate. So, I guess I'll feel a little more as I get more treatments.
After the treatment, we went to lunch and, then, to Orvis. I picked up a cap that is a little more suitable for wearing to work than a baseball cap. I will be getting some skin reaction - they say similar to a sunburn. And, the radiated area will be very sensitive to sunlight/UV rays. So...I'll need to wear a hat/cap whenever I go out.
Gonna kick back and just relax for the rest of the afternoon. Tomorrow and next week I am scheduled for 3PM treatments. I am working on getting rides to work in the morning. Jill will pick me up in the afternoon for my treatments. Hopefully, should work out until I can drive again.
Wednesday, March 11, 2009
Radiation treatment
OK...I have more definite info re my status and next treatment. I met with the radiation oncology doc and the radiation therapists today. Also, had a chest CT - will wait for Dr Einhorn re results of that test.
It seems that my passing out events on the ship were unrelated to the brain metastes of my cancer. Just lucky to catch it while trying to figure out why I was passing out. Looks like the events during vacation were a result of heavy coughing - which may be related to status of my lungs.
However, I do have several very small lesions in my brain which appear to be cancer - about button size. Nothing large enough to have caused any symptoms. Standard treatment for multiple lesions is full brain radiation treatment. They completed the prep work today and I receive my first treatment tomorrow. I will get radiation Th-F, M-F, and M-W for a total of 10 treatments.
Both Dr Henderson and Dr Einhorn seem pretty optimistic. Since my body reacted quite well to the chemo, they seem to think I will react well to the radiation. After the initial round of radiation, there will be regular follow re status.
Once Dr Einhorn gets the chest CT results, he will determine whether I need treatment for my lungs. If so, it would be after I complete the radiation.
Re side effects, the most likely effects will be significant fatigue, hair loss (again), headaches, and possible nausea. However, the biggest hassle is that I am not supposed to drive. I'll have to figure out how to deal with that. Having Jill take me to treatments plus asking her to get me to the office would be a bit much. I'll probably need to get creative.
Jill and I both feel pretty good after meeting with the docs yesterday and today. Seems like just another bump in the road - but, one that we can get over. The driving issue will be pretty inconvenient; but, it doesn't seem like the treatments will be onerous - certainly not as rough as the chemo that really knocked me on my butt!!
Tuesday, March 10, 2009
Back to treatment
Met with Dr Einhorn today. My head MRI indicates that the cancer has metastasized to my brain. Brain tumor is about shirt button size. I meet Dr Mark Henderson tomorrow to begin radiation therapy. Apparently, I will receive radiation treatments for about two weeks. I suppose that I will find out more about the treatments tomorrow.
The inconvenient part of this treatment is that I might not be able to drive during the treatments. I will see what Dr Henderson says about that. Dr Einhorn says that I shouldn't have as severe side effects as with the chemo. Mainly, I will be very fatigued.
I will still get the planned chest CT tomorrow. Dr Einhorn seems to be pretty optimistic about my situation. He feels that I am no worse situation than when we started two years ago. He said that it is likely that he will begin treatment for my lungs again after the radiation therapy - depends on results of the chest CT tomorrow. He thinks we will start treatment with Tarceva - which is a daily pill rather than IV chemo.
So...that's about it for now. The battle goes on.
Monday, March 9, 2009
crap
Thursday, March 5, 2009
Day 21 at sea
Sunny, cloudless skies. Calm seas. An island on the horizon - must be Cuba. What a great start to our last day!! Tomorrow, we disembark. But...we have one last day to enjoy.
Even with a few medical issues, this has been a great trip. The two excursions in Barbados and Panama were great and perfect for us. The fact that we had been to almost all of the ports helped to make it a relaxing trip. We could either get off or stay on the ship when in port since we had already seen the port/country - some of them several times. We also had plenty of sea days - great, relaxing days for us.
Interesting trivia this morning. Had to identify countries on a map, capitals and flags. We did OK - mainly due to our partners since we didn't know much. Didn't help us a lot - we finished in the middle. Well...we finished trivia and tribond this afternoon in the high/middle again. Would have been nice to win a bit more - but, we had fun. Pretty good partners this trip.
This afternoon we started packing. Doesn't take long since we don't need to pack the clothes carefully. But, it is a dose of reality - knowing that we're about done.
Got cloudy this afternoon. Temp has dropped to about 70 and it has become a bit windy. Sea seems to have around 5 to 10 foot swells - not too much; but, enough that you can feel the motion.
Well...that's it. We just saw our last show and are back to the cabin to pack. I guess all good things must come to an end. But...that doesn't mean I have to like it. For those of you waiting anxiously for each update (I bet there are a couple of you!), the next updates will be from Rome in July.
Until then - Take care and be well.
Wednesday, March 4, 2009
Day 20 Cozumel, Mexico
Sunny day. Temp about 73. Seas have calmed from what we've had the past few days.
After mediocre trivia and tribond, we headed off the ship in Cozumel to pick up meds. Oh my gosh, the pier was a very long walk. Luckily, the drug store was almost the first store once we finally got to shore. I got more robitussin dm for my cough since has been working OK.
Jill's oncology nurse, Gina, suggested a z-pack. The drug store had meds they called z-pack and they were able to give Jill directions since they were packed differently from what she gets in the US. Hope it's the same stuff. She seemed satisfied. She has already taken the first dose. We heard from Gina regarding dosage - slightly different and Jill will shift to Gina's dosage.
Now that we are restocked on meds, seems like a good time to relax. We'll probably eat in a few minutes. Then...I think I am up for a nap.
Well...what a beautiful sunset tonight. (Pics attached) Jill is feeling better after starting to take the z-pack. Hopefully, she'll get a good night's sleep. She ate well at dinner tonight - so, that's a good start.
Not much else very eventful today. Kinda sad to realize that we must pack tomorrow. I understand that we have been gone quite a while. But, I am never ready to leave a cruise. Jill commented today that she might be ready to go home. But, I think that might have more to do with our (my) health issues than anything. I am already anxious to go on the July Mediterranean cruise.
Oh well...day at sea.
Day 19 at sea
Well...Jill won $260 at the casino. Apparently, none of the penny, nickel or quarter slots that she likes were available. So, she decided to try the $1 machines. Of course, with her luck, it didn't take long. She decided to quit while she was ahead.
She is a little funky this morning - but...she did eat breakfast. She still thinks she might be coming down with a cold. But, she said this morning that she is worried about me. I told her to stop that and to worry more about herself. Doesn't do anyone any good if she makes herself sick worrying about me. So...she went to the casino and boom - more money won! So much for worrying about me.
My stiff neck from the fall is about gone. My face is coming back slowly. Haven't passed out in a couple days. The robitussin seems to be helping - but the cough is still pretty hard at times. I'm beginning to think it may just take time. Maybe I have a cold on top of my normal coughing. We'll deal with it when we get back to Indy.
Was a pretty uneventful day - except for Jill's casino trip this morning. We really didn't do much. Trivia and tribond - middle of the road. Taco day for lunch - with churro's. Formal dinner with baked Alaska for dessert. Then, to bed for us.
Tomorrow, we dock in Cozumel. No excursion planned; but, we will probably get off briefly to get more meds.
Monday, March 2, 2009
Day 18 Limon, Costa Rica
It is a somewhat dreary day. Good day to just sit around and be lazy. Breakfast in the cabin as usual. Middle of the pack in morning trivia - as usual. Jill doesn't seem to want to get off the ship and I think that is fine with me. I might be perfectly happy to just do nothing. We have tribond and another trivia - but, that's about it.
Well...guess what? We won tribond again today. We finished with 16 - but that was enough. We have one more trivia today - movie quotes. Ouch...the movie quotes trivia was pretty difficult for our team. We only got 7 of 20.
We both napped this afternoon. Jill is feeling just a little funky. She thinks maybe a bit of a cold. Luckily, we have an early night tonight. So...we will likely both turn in early.
Well...turned out to be earlier than planned. Jill didn't feel like eating; so, she left the dining room and went back to the cabin to go to bed. She took a dose of DayQuil.
Day sea tomorrow. So...nothing to do but relax, eat, relax, play games, relax, watch entertainment...
Sunday, March 1, 2009
Day 17 Colon, Panama
Today, we docked in Colon, Panama and have an excursion - 5 hour to see monkeys. The excursion was great.
We first drove about an hour+ with an excellent guide narrating and giving pertinent information during the entire drive. Dora told us about the canal, the culture, the political structure, housing, their foods, the various wildlife in Panama, weather and many everyday aspects of life in Panama.
Upon arriving at the dock, our 13-person group boarded a small power boat for our ride to Monkey Island. Along the way, we made a couple short stops where we saw howler monkeys - closer than we have ever seen them - and turtles who were almost a foot in diameter.
We continued to the island where we saw numerous white-faced capuchine monkeys - including a very small baby. We also saw a three-toed tree sloth - the first we have ever seen. Birds that we saw included black vultures, a harpy eagle (Panama's national bird), herons and a toucan.
Dora provided us with a boxed-lunch of water, a banana muffin and a iguana sandwich (hmmm, tasted just like chicken!). For a bit, some on the bus actually thought she was giving us iguana.
It is 91 here in Panama - so it a bit warm. Mostly sunny. We got a pretty heavy rain shower while we were on the excursion.
Well...I have some robitussin dm. Our trivia partners bought some in Panama since they knew we were tied up with the excursion. Hopefully, it will help tonight. Apparently, I passed out in my sleep last night - is that really possible? Jill says that she felt me shake - so she woke me up. Once again, she said I had been coughing.
I have just about lost my voice from the coughing. I suppose there are some people who think that is a good thing.
Tomorrow we are in Limon, Costa Rica. I'm not sure if we will be getting off the ship. I guess we'll see how we feel in the morning.