Stephs Big Bad Blog

Long Time… But I’m still Just Fine!

2009-01-05T16:46:00.000-08:00

Last time I updated it looked like summer would never get here. It came; and went and so did Halloween and Thanksgiving and Christmas and now it's a New Year.

I also celebrated my 50th birthday, which I was extremely happy to see; a little more than 2 years ago that seemed unlikely.

We actually had beautiful (and dry) weather until mid December. This is the first dry November that we’ve had since I moved to Oregon. Then, instead of rain, we had 2 weeks of steady snow. The first week my side of town had very little on the ground (being at or a couple hundred feet above sea level). Then it started sticking – we ended up with over 2 feet on the ground at my house. There was so much that it was difficult to get out and about as the side streets never got plowed. Luckily my son has an old Isuzu 4x4 to get us around in. The New Year was ushered in with a 6 inch rain fall.

Well, enough about the weather.

As far as my cancer goes, my December CT & MRI are still clear. No one is saying cured, but one of my doctors called me his “miracle”. It all seems like a bad dream these days, now that my hair is grown in, over 16 months have passed since I’ve had any treatment at all. The pain (from the radiation treatments) is still there, but not as ever-present or obnoxious as it was. I still read the lung cancer blogs occasionally, but rarely do I comment. I feel that I have nothing to contribute, as my “battle” was so short and successful. It is also hard to not feel a little guilty. I do not know why I was chosen to survive; why my cancer essentially disappeared, when Stage IV NSCLC with multiple brain metastases is the direst of diagnosis with the least possible chance of survival. I am extremely grateful to be in this position, I feel thankful every single day.

After getting a divorce and cancer last year, I can’t say that my life is back to normal; the old “normal” no longer exists. The new “normal” is pretty darn good. Even though the economy is horrific, my 401k is appalling (I refuse to look anymore), I am happy to be able to fret over these things. I’m also glad to have a job. Our benefits continue to cost more (along with everything else) and cover less, but I’m happy to have health insurance when so many do not. I’m happy that ol’ W finally gets the boot in 15 days. I’ve saved some 4th of July fireworks for the occasion. I truly believe that Obama will return some sanity to the mess in Washington.

The kids are doing exceptionally well.

Kathleen finished her first term of her sophomore year with flying colors. She has not switched her major since last year from Conservation Biology. Almost all her classes are science and she is on track finishing up the general science classes this year. She seems to be studying all the time, but she managed to have some fun. She has her own apartment this year, but is not as idyllic as she hoped. Not much fun having to cook for yourself. During winter term she will be a teaching intern in Biology. No pay, but it will look good on her resume and earn a couple credits. She is planning to apply for an exchange program with the University of Auckland (New Zealand). If she’s accepted she’ll leave in February 2010 for 10 months or so. It will be a wonderful experience, but I’ll miss her terribly. Hopefully I’ll win the lottery so I can visit. Have to find the hobbit houses and Hogwarts.

Glenn has turned around academically. He actually cares about his grades for the first time, and it shows on his report card. He still struggles with remembering what his assignments are, but he’s so much better than he was. He’s still rowing. He is firmly on the varsity boat, and was the “stroke” seat for most of the fall season. (The stroke is one next to the coxswain that every on follows). He will be registering with NCAA clearing house shortly; his coach thinks that many colleges will try to recruit him. Hope that means a scholarship, but it may mean that a blind eye will be turned towards his freshman and sophomore grades… He has also been accepted to an exchange program in Germany this summer. He and 19 kids from his school will stay with families in Nagold for three weeks, going to regular High School classes (he has 2 years of German, so will understand basically nothing). The last week the group will stay in Munich and do some site seeing. Very exciting.

I, of course, will be totally broke and going no where.

I’m still taking ceramics, which I enjoy immensely. I’ve made a few things that are actually decent. I may also take a painting or photography class in the spring. Who knows? I’m happy to be able to think about the future; to make plans. The urgency that I felt up until this summer seems to have disappeared. I am perfecting my procrastination skills. And, if I must say so, I’m quite good at it!

Record Snow!

2008-04-30T12:22:00.000-07:00

And you thought after all this time of inactivity that I was going to talk about cancer…

But, since my the brain MRI & chest CT scans I had last week came back clean – still no evidence of disease – I have no cancer to talk about! I’m convinced I have an angel parked on my shoulder.

For some reason, I have been secretly worrying. I have been having a run of bad luck these past few months, so it was only fitting in my mind that the cancer came back.

My “bad luck”: I tore the ligament in my ankle (as my last post in January talked about). I stomped around in boot for a month, doing physical therapy, all the while straining my already fragile back. Then, my back went out, but thankfully this time I didn’t blow a disk, I “just” had a spasm. When I got over this, as the weather was nice and I no longer needed the boot, went for a walk and proceeded to fall off a curb, breaking my arm. What a spaz. I had this awful splint thing on for a week, and when I went to the orthopedic surgeon for a cast, was told that this type of break (a radial head fracture), didn’t require a cast. My angel was looking out for me again! (Do you know how hard it is to type with a splint on your arm? Being a programmer, typing is kind of important.) Then, I needed a tooth pulled and oral surgery to clean up after the last extraction (the way my gum healed ended up splitting so that my jaw was exposed – ouch.) Not a lot of fun.

Other than that, life has been good.

Kathleen completed her 2nd term at OSU. She likes the school, her classes and most of her professors. She hates the dorms, so is looking for apartments off campus for next year. She is doing well in most of her classes, though it is much, much harder than she imagined. However, she has been taking an insane class load. Last term she took Biology, Chemistry (both with labs), Pre-calculus and Anthropology. It makes my head hurt just writing down the class names. This term is Biology, Chemistry and Calculus; she didn’t pick up a fourth course (thank goodness). This summer she plans to work, take one class at the local community college or Portland State and row with Station L. So, even though she’ll be sleeping here, I probably won’t see her.

Glenn has finally gotten it together in school. After a terrible first semester, requiring him to go to the first ½ of summer school, he had an epiphany. He realized that he actually had to do his homework, not just tell me that it is done. Duh. I wondered why he got done so fast. (He is not taking the same level classes that Kathleen took – she was taking honors level or IB prep – so actually believed he may not have as much homework as she did. Silly me.) He has been working very hard, and his 3rd quarter report card showed the effort, mostly A’s & B’s. Wow! He is still rowing with Rose City. He’s been bouncing between the varsity & JV boy’s boat. He was bounced from the varsity boat, and was unable to attend the San Diego Classic, but managed to get back on the boat in time for the trip to Brentwood (in British Columbia). At this level, his club is playing with the big boys. As it is a newer club, the boy’s (varsity) program has not yet medaled in any of the big events. They are moving up in the rankings. I think they are 4th or 5th in the NW. The Regional’s are in 3 weeks; perhaps they will pull off a miracle and make it to Nationals? He takes his driving test on May 15th, so my days as chauffer may be coming to a close. This summer, other than going to summer school for 3 weeks, he will be rowing and working. Another child I’ll never see…

As for me, I’m taking ceramics for another semester. The first semester, I made a series of pots that any 6th grader would be proud of. Luckily for me, I broke my arm at the end of the semester when no new work was being done. It was healed enough after spring break to do some hand building, and last week I started back on the wheel. I hope to get to a 7th grade level soon. I’m also signing up for a Learn to Row class for cancer survivors. If both of my kids think this sport is the best, I figured I might as well try it. My garden is blooming, so lots of work to do there. And, my job; there is lots of work and the company and product line looks like it’ll be here for a while; a very good thing in this economy.

Oh, and there is a record amount of snow this year, or at least the snowfall is more than at any point in recorded history. Previous record was in something like 1898. And, it is still snowing. As of today, Timberline Lodge had 821 inches this (snow) year (from September, 2007). All the ski areas are still open, which is ridiculous as it will be May tomorrow; normally only those at the higher elevations are still going at this time of year. Global warming works in mysterious ways.

No Surgery - Yet

2008-01-22T15:17:00.000-08:00

I just saw the podiatrist about my ligament... He wants me to do a few weeks of Physical Therapy. Then he will re-examine and evaluate.

Stay-tuned!

Oh, and the doctor was about 10 years old - I felt like I was being treated by Doogie Howser.

One Year

2008-01-19T22:32:00.000-08:00

One year ago today I found out I had two brain tumors. The details of that day are extremely fuzzy, (actually, other than the pain, memories of the weeks before are vague as well,) but I remember my doctor taking my keys and having me call someone to take me directly to the hospital. There, the neurosurgeon started talking about cancer, and survival rates, generally scaring the crap out of everyone, except me - I was just too out of it. I think I remember because I have told the story so many times.

Today, I am, despite all the dire predictions, here.

I am so grateful to everyone who helped me. All the cards, emails, calls, rides, food, gifts, yard work, prayers and moral support really helped me get through it.

I think my refusal to believe that I was really sick may have helped as well. I'm pretty sure my denial skills are extraordinary. The many months of treatment, even the fact that I have (had?) cancer seem like it a bad dream. However, the tattoos down my chest and the scars from my port and on my head are daily reminders that it really did happen to me.

As I enter my 2nd year of living with cancer, I am optimistic. I decided to I needed to start getting out and doing things again. For too long (even before I got sick), my life has been work & home, not much else. So, I signed up for a ceramics class, something I absolutely loved in high school & college. After 2 classes, and 2 open studios, that feeling has been reawakened. I went this morning and before I realized it, 3 hours had passed. Something about the wheel is so mesmerizing. I'm glad the wheels are electric as I don't think I could work a kick wheel with this stupid boot that I'm still wearing!

Finally, about my ankle... The anterior talofibular ligament is torn. I've been referred to another foot doctor who will "repair" it. Have no clue what it takes to "repair" a ligament, though I'm pretty sure it involves surgery. I will find out on Tuesday what will happen next. To bad they don't offer frequent flyer miles for surgeries. Two back, one brain and one ankle (plus the two for the port) ought to get a round trip ticket to Europe at least.

Scan Results: All Clear!

2008-01-08T12:11:00.000-08:00

I had my scans (brain MRI/CT of the chest) last Thursday and my follow-up appointments today. I am still looking good and show No Evidence of Disease. My brain remains clear of mets and my lungs remain tumor free. I do have some “fibrosis” in my left lung, which as it was explained to me, is from the radiation. It is apparently scarring and permanent, and may cause some shortness of breath, but as of yet I have not noticed anything.

Since I’ve gone 1 year (close enough) with out reoccurrence of a brain metastasis, I do not need to get another scan for 4 months. I will get another CT scan at that time as well. I cannot even begin to express how truly lucky and blessed I feel.

I finally went to have my ankle checked out yesterday, and the doctor thinks I have torn a ligament. No wonder it hurt for so long. I will get an MRI in a week or so to see what and how bad the damage is. The doctor slapped one of those awful plastic boots on my foot and told me I have to wear if for the next couple weeks. My co-workers just looked at me clomping into work today and shrugged. I really am pathetic, but I’m glad that a sore ankle is all I have to deal with.

Kathleen returned to college on Sunday, and Glenn started back to school yesterday. Due to the holidays and some vacation days, I have only worked 4 days in the past 2 weeks. So this week will be a long one for us all.

And I am hoping for snow, but so far nothing but rain. Ah, Portland in Winter...

A Very Merry Chistmas

2007-12-26T15:17:00.002-08:00

It has been a while since I've posted, and my brother reminded me that some folks that I don't see or talk to on a regular basis do look here to see that I am still breathing, (which I am, I am happy to report), so here is a quick update.

On the health front, nothing new to report. I have been doing very well, feeling fine. I am due to have a brain MRI & chest CT on January 3rd, and am hoping they will remain clear. My hair is about 3 inches long, it came back dark, gray and very curly. The only problems seem to be my rotten back, which has never been quite right since I ruptured a disk in 2005, and my ankle which I twisted in August and is acting up lately. All this is probably due to the fact that I am overweight, out of shape and it has been raining for the last 2 months.

Some of you may have heard of the flooding out this way, but it never affected me, nor the city. The coast got slammed, and some little towns were wiped out, the freeway and train tracks to Seattle were under water for a week, and landslides closed a number of main through fares, but it was just wet, (really, really wet) here.

Kathleen completed her first term at college and did very well. During the last half of her term, she met everyone in her hall in the dorms, and made many new friends. She switched majors, again. In all fairness, she is trying to find a major to match her interests, which is conservation and the environment. So, now she is majoring in Conservation Biology, which is really Biology with internships around conservation. Her 2nd term will be tough, both Biology and Chemistry, with labs. She has decided to stay at OSU and then look into transferring in her Junior year. So, I can have her close to home for another 1 1/2 years, at least.

Glenn is doing OK in his sophomore year. School has never been his cup of tea, so the fact he is going every day is a good thing. I can't force him to like it :) He is learning to drive, and doing very well; all those years of video games has paid off. He will be taking a Driver Ed over winter break (starts on Friday), as he definitely will not qualify for the good student discount on our insurance. However, he is doing extremely well in Crew. He made the top varsity boy's boat, which is very good (as the seats often go to the junior or senior boys). So fall was filled with regattas, the furthest event was in Sacramento, California. In the spring he will go to San Diego, CA as well as all the events he went to last year. I hope I can go to the Victoria, BC event this year. He had to drop the dragon boats, as that was way to much.

I am not doing much more than working. I have enrolled in a ceramics class with a friend, starting in January, but at the moment I am on the wait list. If I don't get in, I'll look around for something to do other than haul Glenn around town.

Our Thanksgiving was spent with friends that I have been sharing the holiday with for the past 20 years (since BC - before children). Christmas was spent at home, just the three of us. I manged to under cook the Au Gratin potatoes, and over cook the broccoli, but it didn't matter (we had all filled up on to many treats throughout the day). I didn't make any of the calls I was planning to make yesterday, I was too busy being lazy.

I also didn't stress out (that much) this year about buying the perfect gift, or getting cards written out. I did run around at the last minute, but that is just how I am. If I can put if off until tomorrow, I do.

All joking aside, I am truly thankful that I was able have a normal holiday season. It really was the best gift I could ever get.

Small Scare

2007-10-18T06:22:00.000-07:00

When I posted on Sunday, I really was not feeling all that great. I have actually been feeling like I have been coming down with something for a couple weeks, just a low grade, yucky, blah feeling.

On Monday, I really started feeling lousy. I went to work anyway. By midday my head started pounding. The headache continued to worsen throughout the afternoon and evening. My pain meds did nothing to diminish it. Monday night I barely slept because it hurt so bad. So, of course panic set in. I could no longer deny it. So, I called my oncologist first thing Tuesday morning, and he had me come right in.

After an exam, he told me that we could wait it out to see if the headache went away or go in for an MRI just to make sure. I opted for the MRI, as I know that I would imagine all kinds of dire things otherwise. The MRI came out clean. Whew.

Funny, once I got the word that the cancer wasn't back in my brain, I immediately started to feel better. I think I have been subconsciously thinking that I was getting sick again, the bad sick not the normal sick like everyone gets.

I have to give my doctor credit, because he didn't make me feel like an idiot for hitting the panic button. He was very patient with me, and took my headache very seriously. He also went over with me, again, signs of the cancer returning versus getting a cold or flu.

Today, I really do feel OK. I guess you can really make yourself sick with worry.

One Thousand Cranes

2007-10-14T21:27:00.000-07:00

Last week I was honored when I recieved a gift of 1,000 origami cranes. When I was diagnosed earlier this year, one my friends at work, Lynette, started folding cranes for me. Her goal was one thousand so that I would recover. During the past months, word had gotten out, and many people in my company folded cranes, in meetings, during lunch breaks, etc. I actually walked by these piles of cranes, and when I asked about them, was never given a straight answer!

I am again, blown away by this incredible act. I feel blessed. I know that science and medicine played a major role in the cancer diminishing, but I have to think that all the many people that included me in their prayers, or thought healing thoughts, or folded a paper crane, gave that little extra magic to aide in my healing.

It has been a while since my last post, and everything is going well. I'll give you a summary of what has been happening.

The first weeekend in September, the kids had their last dragon boat race. Their team performed so well this past spring/summer that they were offered a berth at the World Championships next summer in Penang, Malaysia. Kathleen will be to old (as they qualified in the High School division), but she may be able to compete with the adult team. Glenn can go, but we'll see how the fund raising goes... Maybe I can chaperone? It would be cool to venture to the other side of the world!

Also in early September, Glenn settled into 10th grade and daily crew practice, and Kathleen prepared to go off to college. On the 17th of September, Glenn & I took her to school. I cried the entire weekend before she left, but once the day came, I was OK. She seems to be adjusting well, adores one of her roomates, (the other is MIA most of the time, and when there not making much of an effort to be friendly.) She likes all of her classes, except forestry (which it turns out has nothing to do with saving trees, but is really about growing trees as a crop). She is also trying out for the crew team. (How both of my kids ended up gravitating to the same non-mainstream sport, I'll never know).

The last weekend in September, I participated in Sail For The Cure, which is another fund raising event for breast cancer, and was held the same day as the Race for The Cure here in town. It was a lovely day for a sail, until the wind died and there was a period of sailing backwards (the current in the Columbia is very strong.) I don't mind doing something to raise money for breast cancer. The amount of money pouring in for reasearch, it'll be the first type of cancer for which a cure is found. But, I figure once they have cracked the code for one, it is only a matter of time for the others.

Last weekend, my brother came out to visit. We went on a road trip to Crater Lake. I was a little worried that it wouldn't happen because it started snowing (over 4,000') really early this year, and they don't bother to keep the roads open in winter. It was cloudy, and there was snow on the ground, but not on the road. The clouds lifted off the lake for a couple hours while we were driving around, and the sun came out for a little while. I must go back in the summer, because we didn't get to see the fabled blue water - the sky was too gray - but it was spectacularly beautiful just the same.

Other than that, I have been working full time. I've finally managed to get back in the swing of things. I'm tired, but that goes with working. Everyone is tired after working all day. I feel OK, and hoping to avoid the cold that has been going around!

3 Months Off

2007-09-05T11:11:00.000-07:00

I met with my medical oncologist, Dr. Reynolds, yesterday. He agrees with my radiation oncologist, Dr. Sueng, that everything looks normal. He also thinks a three month wait is appropriate. Dr. Reynolds was actually smiling, and more optimistic than I've ever seen him. He said that I've responded as well as anyone could hope for, more than he thought possible!

I am now re-entering the land of "normal". Soon I can loose the scarf - my hair almost covers the scar now. In case I get sick, or start feeling lousy, I have been instructed on when to call the cancer docs as opposed to my primary care docs.

Glenn starts school & crew tomorrow. This weekend are the final Dragon Boat races of the season. I take Kathleen to college on the 17th of September. My brother is coming for a visit the first week of October (we hope to go to Crater Lake) and my mom is coming out for my birthday in November. Other than that my life will be work, hauling my son around, yelling at him to do his homework, making dinner, etc. Nothing exciting, but to me it will be great! I am so thankful that I can return to this existence and leave the cancer patient behind, even if it is only for a while.

Back from the Beach

2007-09-03T12:49:00.000-07:00

We had a nice time at the coast. Weather was perfect on Saturday, sunny, not to hot, nice breeze. Glenn & I rode our bikes all morning, exploring Seaside.

We discovered a 6 mile trail that went over the top of Tillamook Head ending up at Indian Beach (at the north end of Ecola State Park). I knew that I couldn't ride a challenging 6 mile trail, with 1000' climb (I am too out of shape), but Glenn really wanted to do it. So, after getting helmeted, loaded up with water and properly attired, I dropped him of at the trail head, and drove to Indian Beach. There I parked, and hiked up the Clatsop Loop Trail, (which I took very slow,) and met him at the Hikers camp. We then came down together. Well, he rode ahead and waited for me at markers along the way.

On Sunday, it was warmer, but cloudier. I seemed like it was going to rain all day (at times the air was wet!) . We decided to rent one of the electric cars for an hour. I let Glenn drive for a while (though technically I wasn't supposed to).

It was nice to get out of the city for a couple days. Even though the ocean is only a 90 minute drive away, I don't get there nearly enough. Walking in the forest was amazing, so quiet and peaceful. I also forget sometimes on how spectacular Oregon is. Too often, I take it for granted. Well, it nice to be outside, enjoying the beauty of my own "backyard".

Now, its back to reality. I will try to ride my bike to work, at least until the rain comes. I was going to start tomorrow, but I managed to sprain my ankle walking out of a restaurant this morning. If it's not one thing, its another!

Results: NED

2007-09-01T09:29:00.000-07:00

NED is the acronym that I have seen on cancer blogs, and for a long time I didn't know what it meant. When I finally learned the definition, I have hoped that one day I would hear that term in relation to me. Well, yesterday it happened!

NED: No Evidence of Disease

Short of hearing the words "You are cured", NED is the best thing a cancer patient can hear. Dr. Sueng also used the word "normal" when talking of my results. Normal, meaning no (visible) cancer; nothing, nada, zip, zero, or in language of my kids "OMG". I have the actual results, which talk about parts of my lungs and brain that I never knew I had (before this year anyway), but I think NED says it all.

I was so happy that I almost kissed the doctor. I'm still floating on a cloud. I also do not have to get another scan, nor see Dr. Sueng, for three months! I see my medical oncologist on Tuesday, and he is significantly less optimistic than Dr. Sueng, so I may not have that long of a reprieve, but for now, I will rejoice having a break until after Thanksgiving.

I am writing this from an Internet coffee shop in Seaside, OR, so I will close now. The sun is shining, the temperature is perfect (right now it's in the low 70's). I am here with my son, and we both have are bikes, so we are going to go for a ride, then soak our toes in the freezing Pacific and perhaps build a sand castle (I brought some of my carving tools). Perhaps we will play mini-golf or go to the arcade. Tonight we will watch another "classic" movie (last night's feature: Robin Hood, Men in Tights).

So, I am signing off and going to have some fun!

Scan Day

2007-08-30T09:22:00.000-07:00

This afternoon, I go in for my regular Brain MRI plus an upper body (neck to hips) CT scan. I truly hate these days, as I always worry. If anyone checks today, think positive thoughts!

I will update after getting my results; I see my radiation oncologist tomorrow, on Tuesday, I see my medical oncologist (2 month check-up, blood tests and port "flush"). I am off to the coast after my tomorrow's appointment, so the post may be early next week.

I have been officially off disability and back at work for almost 2 weeks. I forgot how little free time there is when you work full time! I also forgot how tiring it is. But, it feels like I'm getting my life back. It is nice to be out of my house, doing my job and being around my co-workers.

My kitchen is done, finally! Other than the paint color (which just doesn't work), it is beautiful, and worth the wait.

Radiation Completed

2007-08-16T22:14:00.000-07:00

Yesterday, I finished radiation therapy. I went through treatments without any side effects, which was a nice surprise. I did get a little tired, but other than that – nothing. No skin irritation, no swallowing problems, and unfortunately no loss of appetite.

I get another MRI & CT scan on the 30th of August, and unless there are any unpleasant surprises, I will be able to stay away from Providence Hospital for 2 months! Its weird being done, I feel that I should be doing something more, but I know that I have gotten the most aggressive treatment for almost 7 months, so my body does need a break. I can also focus on my diet and begin regular exercise. I have managed to gain 15 lbs since January, and it is time to take it off.

My hair has started growing, my eyebrows are almost all the way back, my eyelashes about half way. I’m thinking that in another month I can abandon the scarf. My hair seems to have a lot more gray than it did previously... I was hoping all that light hair was blonde, nope, it's gray.

I’ve been working 20 hrs a week since May, and am now ready to return full time. I will work my first full day on Monday. It will be good. With my daughter leaving for college in a few weeks, and my son going back to school plus 2 ½ hours each day of crew practice, I need to do something. And, I need to work to pay for college and crew…

My kitchen is still not done. Waiting on the counter top, but hopefully that will go in next week. Also, the color we painted it doesn’t look as good as we had thought once the cabinets went in. I am going to wait until the counter top is installed before picking out a new color. Hopefully, it will all be done soon.

My daughter participated in the Relay for Life a couple weeks ago. I went and walked the Survivor lap. There were about 30 other survivors, and we all got special tee-shirts and walked around the ¼ mile track to kick off the relay. At the end of the lap, we were each given a medal and fed a nice lunch. I returned in the evening for the luminary ceremony. Luminarias are decorated paper bags that are dedicated to folks who have died or who are battling cancer. The bags are placed around the track and have a candle put inside. Once the sun goes down the candles are lit, and they have a nice ceremony and everyone walks around the track. I had made bags for my dad and in-laws, and when I returned Kathleen had made one for me. It was weird seeing my name, but it made me cry because it was so sweet.

At this event, there were maybe 200 or so people involved, but there were enough luminarias to line the track. Each bag represented one person who has/had cancer, and who was known by that little group, and really brings home how many are affected. I decided that I am going to get a team together to participate next year.

I’ll try to post after my next scans, but it probably won’t be until after the weekend. I am going to the coast, to Seaside, for Labor Day weekend with my son. This will be the first vacation with just the two of us, hopefully he’ll enjoy it; (Kathleen is going to Bumbershoot in Seattle that weekend with her friends.) We’ll take our bikes and cruise around; hopefully a perfect end to summer vacation.

Radiation Therapy

2007-07-29T14:26:00.000-07:00

I started radiation on Tuesday, and have had 4 treatments this week. So far, no side effects, but the doctor said I probably wouldn’t have any until after the 2nd week. I’m pretty tired, but as I haven’t been sleeping well (again), I think that is more the reason than radiation. However, for some reason I slept for 11 hours last night (the kids did too). Perhaps because it was absolutely perfect sleeping conditions (overcast, upper 50’s – low 60’s, very low humidity).

On Tuesday, I spent an over an hour in the radiation room, on the table, getting “dialed in”. I got x-rayed about 10 times, and the technician and the doctor determined exactly the area I was going to treatment in. Towards the end my back was spasming because I was not allowed to move the entire time. However, it didn’t do any permanent damage.

I met with the doctor after it was done; saw pictures of my insides and the target area for treatment. My esophagus is just outside of the blast zone, so he thinks there will be minimal (if any) swallowing side effects. It is also a small area being treated, so I can get a higher dose for a shorter amount of time; I only go 17x where I was originally going to go 30x. Much better. I also asked him "If you saw these x-rays and CT scans, without knowing any of my history, what would be your diagnosis?" He told me, "Probably, normal". He said unless someone knew where to look, was suspecting lung cancer, and was really, really good, the chances of noticing the slight enlargement in my nodes was slim. Also I verified with him that there was a chance that radiation would help. The theory is, whatever cancer cells weren't poisoned with the chemo, would be burnt to a crisp with radiation.

W-F I received “normal” treatments, which only take about 10-15 minutes, total. After I get changed in to the always attractive hospital gown, I sit and read until I get escorted back in to the radiation room. The room kind of looks like I imagine the examining room of a spaceship would look (the one that has been beaming up innocent citizens for years :) I lay on a table that is on a lift, and there is the giant arm hanging over it. The arm has a large disc on the end of it, which sits right over my face and chest. My head and arm are placed in the foam mold they made when I got mapped. My tattoos are lined up with red dots that are emitted from the disc; there are lights coming from somewhere that align with the tattoos they put on my side. Once I am perfectly aligned, the table shifts around (on the horizontal), to the right and to my feet. Then the giant arm swings around so the disk is pointing towards my back, right shoulder area. One the other end of the arm, is a large gray rectangle (probably absorbs stray radiation). Then the technician leaves, and the toasting begins; the machine buzzes while I get broiled for 2 minutes. Then the arm swings back toward my left shoulder, and I get another 1 ½ minutes on this side. Then I’m done. (The actual area of radiation in in my left lung, towards the center of my chest.)

As far as my kitchen goes – electrical box will be moved tomorrow. Then the hole (where the box was) will be closed, the final layer of "mud" will go up, and the walls in the kitchen will be finished. I have a week to get the walls primed and painted, then all the installation will happen the week of the 6th! (The counter top will be the following week, but at least the messy stuff will be done, and I can begin moving back into the kitchen!)

Today, seeing as I have no motivation to do anything, the kids and I are going to try to see either “Hairspray” or “The Simpson’s”. Must make sure my children get the proper intellectual stimulation :)

Six Months

2007-07-20T17:53:00.000-07:00

Six Months ago my life changed, forever.

Six months ago today, I was in surgery, having tumors removed from my brain I only found out about the day before. My loved ones did not know whether I was going to survive the surgery. I had been told, that if I survived, I may loose the ability to talk, to use my right side, or even maintain my independence. Six months ago was the first time I heard that I probably had cancer. My neurosurgeon, (who had the bedside manner of Rodney Dangerfield), told me that I would probably live six months, at most (he happened to say this in front of my daughter, who of course became hysterical). The lung cancer specialist that I went to for a second opinion told me the same thing.

Well, here I am, six months later. The only reminder I have of my brain surgery is an impressive scar (clearly visible due to my lack of hair). The constant headache is slowly diminishing the further away from chemo I get. I hope it’ll go away completely in a few weeks (though radiation may bring it back again). Chemotherapy was so effective that I have virtually no evidence of disease. And, if radiation is successful, any cancer cells that are left in the nodes will be killed off. My energy level is slowly increasing, and I feel pretty good. Also, every one tells me I look healthy (well as healthy as any overweight 48 year old woman with no hair, eyebrows or eyelashes can look :). My hair is starting to grow back - I have a little stuble in various places, but nothing much, yet.

In six months, I’ve gotten my affairs in order; I now have a will and a living trust. I landscaped my front yard, painted half the inside of my house and started remodeling the kitchen. I’ve organized my files and a couple closets. I was able to attend many of my kid’s activities and events. I watched my daughter run for Rose Princess, go to prom, graduate from high school, and we just returned from a 2 day program at Oregon State, where we met her advisor, toured her college (Forestry), registered for classes, attended lectures, and basically got her ready to go in September. I have been working part-time, and started to go into the office on a regular basis, which is nice. I’ve been to the Olympic peninsula, the coast, the gorge, and the mountains. I’ve played Bunko a number of times, carved sand, read books, gone to movies and goofed off. In other words, I’ve lived.

And, I plan on living for a long, long time.

Update on the kitchen: Plumber to come on Monday to move the pipes into the wall. The guy I hired to take down the ugly acoustic tile drop ceiling & florescent lights will fix my walls when he hangs the new ceiling. The electrical box will be moved on July 30. The cabinet, counter top and floor folks are on hold and hopefully I will have definite dates early next week.

Tattoos, Sand and Remodeling

2007-07-17T16:58:00.000-07:00

Not much new to report as far as my treatment goes. Last week I met with Dr. Reynolds to review my CT scan. Everything is stable, nothing growing. I asked if the nodes had shrunk anymore, and he said that they were to small to tell. He seemed skeptical about the plan to get radiation; he didn't think it would make any difference. Bah humbug I say!

Yesterday, I went to get "mapped". I got to go through another CT scan machine, (no IV, no injections, no drinking that vile dye). Before I was put through, they molded a foam pillow to my arms (which I held over my head.), so I would have them in the exact same position every time. After a couple times through the machine, I was pulled out and the technician put 3 little dots down the center of my chest, and one on each side with a sharpie, and glued a little metal do-dad the center dot, then another trip through the machine, where lasers we aligned with the marks. Next the dots were permanently tattooed on (which was very uncomfortable - don't see how folks can stand to get large ones). One more trip through to make sure all was aligned, and I was done. The tattoos are less than impressive, looking more like a freckle (or blackhead). I go in next Tuesday for my first radiation treatment.

My life otherwise has been somewhat busy. Last week, I worked in the office for half a day, for 3 days. It was nice getting out of the house! On Friday, I got to carve with my company's team at Sand In The City. It was fun to play in the sand again. My skills were very rusty, and I my carving was extremely slow, but I managed to help a little. Our team carved a "Portland Postcard", which was a forced perspective of all the local landmarks (Mt. Hood, the Made in Oregon & Portland signs, the Freemont Bridge, Multnomah falls, the Trolley and the Paddle-wheeler) with some of the recognizable buildings in front (Big Pink, KOIN tower, Standard, etc). I'll try to post some pictures, mine aren't all that great, so I'll see what I can find.

The remodel of the kitchen has finally begun. I had ordered everything in early May, expecting it to be finished when I was done with chemo. But, due to a mix up and scheduling issues, everything was put off until now. The cabinets were removed on Friday (while I was carving sand). Once the cabinets were out, it was discovered that the plumbing and wiring were simply ran in front of the wall, rather than in it, which is a problem because there is not enough room for the new ones to go in. Then, my son & I removed wallpaper on Sunday, and the steam started melting the wall in some places, in others plaster fell off in chunks. The walls are a comination of drywall and lathe & paster, all of it ugly. Whoever did the work either a) didn't know what they were doing b) were on serious drugs c) were doing everything as cheaply as possible or d) all of the above. Its a nightmare.

I had a plumber out today to give me an estimate to move a couple of pipes into the wall and it won't be cheap. Add to that, the wiring (more like the breaker box) is not at code, and that probably has to be moved as well (I have an electrician coming Monday). All this may put off my kitchen install a couple weeks. (To make things even better - my new cabinets arrived today, filling my garage, so we do not have access to my freezer, where all the extra food is)

The whole point of me going on this remodeling binge was to make it easier for the house to be sold in case the worst happens; from what I'm being told, the location of the breaker box will halt a sale as it won't pass inspection. Yeah. What was affordable, is quickly getting out of hand. And, I don't need the stress, but I don't have a kitchen, so proceed I must.

Next time I talk about remodeling something, will someone please kick me?

MRI Results and a New Treatment Plan

2007-06-30T11:17:00.000-07:00

I had my 6 week Brain MRI, and everything looked good. The little mystery dots have turned in to a mystery line, but the size hasn't changed. This has Dr. Sueng even more convinced they are a blood product. Sounds gross, so I don't ask for more explanation, I just know it isn't bad.

I have not been doing much research, or visiting the lung cancer survivors sites lately (been too busy). But, there were a couple things that I had found out that I wanted to talk to him about. First of all, I had become concerned about my having not received whole brain radiation (WBR), as everything I read pointed to it being the only way to ensure that any cancer seeds remaining in my brain were killed.

Secondly, I wanted to talk to him about something I read about, Precocious Metastasis. I have been told over and over that my cancer is incurable and inoperable. I really can't and don't want to believe it, especially since there is so little of it. The treatment I have been receiving is the standard of care for cancer that has metastasised. The term used is Palliative treatment. So things that would be done to cure the disease are not being done to me, and I wanted to know why. With Precocious Metastasis, the patient has a brain metastasis identified as the ONLY area of metastatic disease; a metastatic deposit that somehow slipped out early in the disease. Based on the article I read, I fall into this unique sub-category.

So, I had a nice long talk with Dr. Sueng. He still wants to hold off on the WBR. That procedure is typically given immediately after surgery. He feels that the approach he is taking is sound. I will continue to be monitored closely and if a tumor develops, it will be removed by Gamma Knife; I will receive a course of WBR radiation at that time.

As for the Precocious Metastasis, he is familiar with the concept (he called it something different), and agrees that I fall into this category. Providence Portland is planning on doing a study of this when the new cancer center opens in 2008, but for Melanoma and Liver (or Kidney?) cancer. So not good for me. However, he is willing to go outside the standard of care, and treat my disease with "curative intent therapy". What that means is I will receive radiation on my lymph nodes; 5x week for 6 wks. I can't receive the stereotactic radiation as it would probably kill me (the lymph nodes being next to vital organs). The hope is to kill the cancer in the nodes (and probably the nodes themselves) completely.

I get my regular CT scan on Monday (the follow up to chemo), but will get a more thorough scan to prepare for radiation sometime in the next couple weeks (I don't know if is a PET or just more detailed CT). As my general health is good (Dr. Sueng seems to think of me as a strong woman), and the amount of disease is so small, the doctor thinks that taking a more aggressive (curative) approach may be beneficial in my case. He warned me that it may have no long term benefit, but it will have no adverse affect. I will have the short term side effects (like difficulty swallowing toward the end of treatment), but nothing permanent.

Of course, this may be nixed by the powers that be in Providence's Thoracic Oncology department. But, I hope not.

I am willing to give it a try, as I know what the affect of doing nothing is. And now, even this remote possibility of actually curing my cancer, gives me hope. And hope is a very powerful thing.

Busy Again

2007-06-28T09:50:00.000-07:00

It has been a while since I updated, again. Last time I posted, I had just received a shot of Neulasta. Let me tell you, that stuff kicked my butt. Either that or I got slammed by the chemo. Initially, I ached all over, like I was getting the flu. Then my joints were extremely painful; my pain meds didn't even make a dent. The worst was in my right shoulder / arm; I could barely lift it without excruciating pain. Luckily, when I woke up Saturday morning, the pain had mostly subsided. Good thing, because my sister, her husband and 3 kids arrived late Friday night. Funny how my symptoms come and go so suddenly, but I'm glad the pain backed off!

So, Saturday we all went to the Saturday Market, which is always fun and is a good introduction to Portland. In the afternoon I took them on the scenic Columbia River Gorge drive, stopping at Latourelle and Multnomah falls. On Sunday, we tried to go to the Alpine slides, but as it was foggy and drizzly, they were closed. So we drove up to Timberline Lodge. It was clear and sunny, we had lunch and took the Magic Mile SkyRide (it was freezing). Then we drove down the back side of Mt. Hood, through Hood River (stopping to look at the kite-boarders and wind-surfers). On Monday, Vernon (my brother in-law) and I had to work, and Kathleen was not back from Canada (she participated in the Alcan Dragon Boat races in Vancouver - they came home with the bronze medal in the 'A' division), so my sister took her kids and my son to the World Forestry Center, the zoo, and the children's museum (that is a lot!). On Tuesday, I worked in the morning and then we all drove up to the Hoh Rainforest. We had thought it was a 3-4 hour drive, it took 5! We had time to walk around, take one of the trails, before we checked into our hotel and got dinner. The next morning, after breakfast, we went to Second Beach at La Push. My sister and my family split up at 1pm; they were going to tour the rest of the Olympic forest, we had to come home. On Thursday, I worked, and my kids did whatever; Syd and her family drove to Mt. Saint Helens and spent the night in the area. On Friday, Vernon and Sarah (my sister's oldest) went back to Massachusetts. On Saturday, Syd, her 2 little ones, my kids and I went to Cannon Beach for the day. On Sunday morning, my sister and her kids went home and I collapsed.

I think I wore myself out, because since Sunday afternoon, I have been exhausted. I sleep for 8 hrs at night and take 1-2 naps each day. This morning is the first morning I haven't woke up tired. My red blood cell count is supposed to tank on day 14, which was Sunday, and I think I might be / have been anemic (I found an information sheet on it and I have all of the symptoms). I do feel a bit better today. I probably did to much, but it is better than sitting around doing nothing!

I have a brain MRI tomorrow, which I will get my results from immediately. As I have Sand practice tomorrow night (for Sand In The City), I won't be posting until Saturday. I have a CT scan scheduled for Monday (the 2nd), but won't get my results until Monday, the 9th, so unless the MRI shows that I need radiation, I probably won't post until after the 9th.

After that, I will try to post occasionally, but honestly it won't be very often. My life is not that interesting, and if all my scans are OK, then I won't be getting any treatments for at least 2 months. I may just let this blog whither for a while... I don't know. But, consider that a good thing, as I will have returned to my normal life, at least for a while!

Dragon Boats

2007-06-12T19:03:00.001-07:00

CHS Dragon Boaters
In red "Dragon Fire" in purple "Dragon Funk"
Note: they all had their hair died to match their tee-shirts. Some, like my daughter, opted for the temporary spray on version, others were more bold and died their hair with permanent colors!

The 1/4 finals, Dragon Fire takes a decisive lead. Kathleen is on bench 5 (the blonde girl in the front is on bench one, count (to the right) from there).

Note on the picture above - no other boats, and all the other flags are in place (green & yellow to the left, blue to the right)

Kathleen, Josh and Connor (team captains) accepting thier second place trophy and medals from a Royal Rosarian.

Graduation

2007-06-12T18:48:00.000-07:00

Kathleen has her diploma!

Kathleen and me

Kathleen shed her robe (her brother is wearing it), me and her father

Time Flys

2007-06-12T11:44:00.000-07:00

I realized that I hadn't posted in quite some time. Not because I have been sick, just busy. Real busy. My mom & step-father came to town on June 1st, my daughter graduated high school on June 2nd, I worked in the mornings the following week, my parents worked on various projects around my house, in the afternoon we either worked, rested, toured or shopped. We celebrated my daughter's 18th birthday on Thursday (June 7th), her actual birthday is the 8th, but as the Rose Festival dragon boat races were on the 9th and 10th, her team had their annual hair dying party at our house the afternoon of the 8th, with a "pasta feed" at another team members house that evening. On Saturday the 9th we caught a little bit of the Grand Floral parade, then went to the dragon boat races (the weather was miserable) and waited for her race (which started 1 1/2 hrs late). I was supposed to work on a demo sand carving that afternoon, but was too cold and wet, and just went home. My parents went home early Sunday morning, then I spent the rest of the day at the Dragon Boat races (the weather was much, much better). Kathleen's team, Cleveland HS Dragon Fire, won the Silver Medal in the HS division, Cleveland's "JV" team, Dragon Funk, also made it to the finals (which was amazing), but came in 4th. Whew, I'm tired just talking about last week. We all came home, exhausted. Kathleen then proceeded to spike 102° fever. Luckily, the fever broke overnight, but she woke in the morning with a cough.

Yesterday, I had my 6th, and last chemo treatment. For the first time, I actually slept during treatment for about 2 hours! I was able to tolerate the Taxol better too, and finished in 6 hours, as opposed to 8.

My White Blood Cell count was very low, 3.2 (low normal is 4.4). My counts have been getting lower after each treatment (from a 9.2 to 4.6), but this was the first time they were not in normal range. My red blood cell count has been consistently low, and dropping, but has not dropped as dramatically as the white. So, I had to go in this morning for a shot of Neulasta. The short explanation I got was it makes your bone marrow production go into overdrive, creating more white blood cells. I told the doctor about my daughter being sick, and told the nurse this morning. They told me "avoid each other as much as possible". Great, we happen to like each other, and I really don't see all that much of the girl, but I will do what is needed. If I do get sick, I currently do not have the defenses to get well on my own, and need to contact the doctor immediately. I may have to go in for IV fluids, or be admitted to the hospital if necessary. I hoping that I miss this one.

Right now, I'm pretty tired, and ready for a nap, but that is to be expected the day after chemo. I am to expect joint and bone pain from the Neulasta, setting in tomorrow and lasting up to 4 days. I had joint pain from the chemo last time, so I may get a double whammy. Yeah.

I go in for another CT scan in 3 weeks, on July 2nd. (I have a brain MRI on the 29th - but the brain is being monitored/treated by Dr. Sueng). Then I see Dr. Reynolds (the chemo dude) on July 9th. This CT scan will be used as my "baseline". Then, I will get CT scans every 2 months, and if something comes up, I will get whatever 2nd line treatment seems appropriate at the time. As long as the CT and MRIs remain as they are, I can pretty much resume my life! I can't wait to have hair, and to be able to get back to normal as much as I can.

I will post a few pictures, hopefully this afternoon, but figured I really needed to post so you all now that I am OK!

Chemo Angels

2007-05-30T18:05:00.000-07:00

There is a wonderful program that I was told about a few months ago called Chemo Angels. Around the time I heard about it, the weather was lousy, I was feeling isolated, lonely and depressed, and so I went to the website (http://www.chemoangels.net/) read about the program and signed up.

I was accepted into the program, and within a couple weeks I had 2 “Angels”, Jeanne and Tracy. These two women have been absolutely wonderful, they truly are Angels! At least once a week I receive cards, little gifts, pictures, and all types of encouragement. It is wonderful going to the mailbox and getting something other than bills or another credit card application.

If you know someone going through chemo therapy, have them sign up. Or if you want to help someone going through chemo, perhaps this volunteer opportunity is for you. I would like to try to be someone’s angel after I stay in remission for 6 months. I’d have to improve my snail mail skills; I can’t actually seem to mail anything. (I’ve had a card for my niece’s college graduation sitting here for over a week… Alison – I don’t know if you check the blog, but Congratulations!)

Memorial Day

2007-05-29T06:52:00.000-07:00

Yesterday was Memorial Day. The last day of a three day weekend. The unofficial start of summer. Half the population hits the road - many to overflowing campgrounds, the other half is doing home improvement projects. We fell into the home improvement category. We painted the living room, dining room, hall, stairway and upstairs family room. It sounds like a lot, (well it is), but all my rooms are very small. Towards the end of last winter (March 2006), my oil furnace had decided die, belching out oil through all the vents, covering the walls and ceiling. I had tried cleaning it a couple times, but only succeeded in smearing it. I really didn't know how absolutely gross they were until they were painted with a fresh coat of paint. It is like I have a new house! A couple of Kathleen's friends came to help (I offered slave wages), one was here all three days. I think it helped her stay motivated, actually I think it helped all of us stay motivated, cause there were lots of music, jokes and laughter.

Obviously, I am feeling better. I was only down completely for 2 full days, then able to do some errands on Thursday & Friday, and my energy level was back to normal by Saturday. But, my stomach has been messed up, I was unable to get much down. I ate toast for 5 days. Memorial Day weekend is also where it seems every bar-b-que in town is fired up. My neighbors were cooking up something on Saturday. It smelled like burgers. Instead of being nauseated, I got really hungry. I almost climbed over the fence. but, as I was covered in paint, and they had company, I went out and got myself a big old burger, with fries and a shake. Yum. Guess I am over the hurdle!

Memorial Day is also when we are supposed to honor those who died while in service to our country. I really don't know anyone who has died fighting in any wars. Vietnam ended when I was in 11th grade, so none of my peers had to go. I have known military personnel since, but if they had to go off to whatever battle the US was fighting, have returned safely. So, I've never really stopped to honor the fallen on Memorial Day. Yesterday, a radio station was having a "Gone but not forgotten" special, where they played the music of artists who died before their time. A memorial to musicians. That made me start thinking of the people I knew who have passed away. Many of them have died from cancer; my dad, 1991, lung; my father in-law, 2003, prostate; my mother in-law, 1987, breast; my co-worker Tania, 2005, esophageal. I also realize that I was as kind as I could have been to any, I really was a selfish brat. I did not really take the time visit as often as I should have, I could have at least called to see how they were really feeling, and listen when they answered. I could have been much less self involved. I also know I was not very empathetic.

And now, I really miss them, my dad most of all. I was so mad at him for choosing to treat his cancer with a homeopathic treatment from Mexico, and refusing anything conventional. I was so mad at him for thinking that he was going to be cured, to not plan for the worst. But, my dad didn't have a conventional bone in his body. He always marched to his own drummer. And now I totally understand his belief that he would cured. It is the only way to get through each day. Without hope, what is there? I did make sure that my affairs are pretty much in order, that my kids will be taken care of. But, being responsible does not mean that I give up.

So, for me, Memorial Day 2007, was in memory of those who have been lost to cancer. I miss you.

Chemo is Like a Box of (really bad) Chocolates...

2007-05-23T16:23:00.000-07:00

You never know what you are going to get. I guess I should be thankful the last couple rounds went so well, but darn, it still not fun when you get slammed! This round I'm exhausted and the flu-like aches and extreme joint pain have returned. No fun.

My stomach doesn't seem to want food, even though I'm hungry. It doesn't make sense, but there it is. I ate 1/2 a bagel, that wasn't rejected, but didn't sit well either. Tried fruit - made me gag. But a pinwheel cookie? (You know the marshmallow ring covered in chocolate?) Not a problem. The cookie found its natural habitat.

My temperature gague is broken too. I go from freezing to sweating with no warning. Could be I am (as my daughter says), turning into a man :)

Speaking of broken, my microwave decided to blow up. The kids have to learn how it was in "the dark days" when it took more than 3 minutes to cook dinner. I'll have to get a new one, eventually. I don't think anyone will die of hunger in the 50 minutes it takes to warm up a "tv" dinner. I'm sure not cooking for a few days. That is unless the kids want pinwheels for dinner!

Round 5 down, 1 more to go

2007-05-22T06:44:00.000-07:00

Yesterday I had by 5th treatment. Got to look at my latest scans, and my lymph nodes look to be almost normal size, but the doc reminded me to not think of myself as "cured".

At this point, after the 6th round, I go to a period of regular monitoring (regular CT scans & MRI). I am unwilling to go more than 3 months between scans, as every doc has told me that I the brain tumors probably grew in 5-6 mths, and it metasticized from my lungs pretty darn fast too. The thing would be to convince my doctors, and my health insurance company that it 3 month scans are necessary.

The treatment it self was the same old, same old. I did get thru it in 6 hrs, 1+ shorter than usual. I didn't overheat from the taxol, so they were able to pump it into me at the top rate. I also managed to doze for a couple hours. Could be that I was attempt to do a code review while I was getting a mega dose of Benadryl. Who knows, maybe I was just tired, but my time in the infusion room seemed to go quicker this time.

Glenn took silver at the NW regionals. The Everett boat pulled ahead at the last stroke, and won by 4/10ths of a second. The awards had to be based on their heat times, as Sunday it was raining, and it Thunder & Lightning were expected, so the last 2 hours of the race was canceled. I really didn't feel like standing in the pouring rain, even for a little while, but I do feel sorry for the boys. They really wanted a chance to beat the Everett team in this race. Glenn's boat has been beating them all year, so to come in 2nd without a chance to redeem themselves at finals really made them quite mad.

Kathleen is done with high school. All that is left now is to graduate. There are a couple assemblies that she needs to go to, but not much else. So she'll be around for the next few weeks. Probably sleep most of the day, and go out with her friends at night, so we'll see each other in the afternoon. That way I can get my work done in the am.

It's A Good Thing...

2007-05-18T14:00:00.000-07:00

I had another CT scan on Tuesday. A talked to my oncologist this morning, and my (hilar) lymph nodes have gotten even smaller! The nodules in each lung remain unchanged, and the doc is pretty convinced that they probably aren't even cancer. As chemotherapy continues to be effective, and I will get 2 more treatments and be done (for now). I cannot believe I'm excited that I will be going in for more chemo, but I am. As Martha Stewart always says, "It's a Good Thing"

Speaking of Martha , (someone who I will never be like, ever), I finally used the house cleaning service, which I had been given a gift certificate for. I had been saving it for when I really needed it, but upon finding out it expired on the 21st of this month, I quickly arranged for them to come out. I knew the house was desperately in need of attention, but not until after the cleaners were done did I realize how disgusting it was. I will have to have them in more often then once in 14 years! Thanks to you wonderful folks in legal!

Glenn & I embarked on a project for his history class. He wanted to make a flag for his groups "country", so we made a pattern, cut out the pieces, dragged my ancient machine out of the attic and last night he learned how to sew. The flag is looking pretty cool, but now the remnants of this grand project are all over, returning the house to its former "glory" in a matter of hours. Oh well, it is clean under the clutter.
A Budding Seamstress
The Flag of Country "X"

This weekend Glenn competes in the NW Regional crew regatta, apparently a very big deal. As a novice, if he wins it means a medal, but that's it. For the kids in the top boats, winning means a trip to the Nationals. Luckily the event is at Lake Vancouver, just across the Columbia. Our club is the hosts, which means most of the work is done by Rose City parents. I, of course, just had to volunteer, so I get to work the finish line Saturday and Sunday. I'm not sure what all it entails, but I do know it is in a tent, and out of the sun or rain.

Kathleen is almost done with High School. She had a presentation for her NW Ecology class today out at the University of Portland, and Monday will be her only finals. She is so ready to be done with it all. Lately there has been tons of drama (not with her, but with her friends), but its probably all related to stress and senioritis. Graduation is June 2nd, so the kids get a couple weeks of down time, so hopefully everyone will be friends again by then!

On Sunday, there is a Baccalaureate ceremony for the soon-to-be graduates. I have no idea what it is. All I know is Kathleen is to be in cap and gown, and Glenn & I need to somehow be cleaned up and present (we have to go straight from the Regionals).

I have chemo on Monday, so will be able to "relax" then. I may actually try to work, as I have to sit there for 6+ hours any way. I am not allowed to work for 1 week after treatment, but that's probably A Good Thing!

Another MRI

2007-05-14T14:52:00.000-07:00

I had my 6th Brain MRI today, and it was just as fun as all the others. I am actually getting used to them, and have learned to relax while in the machine - even with all its groans, clicks and other odd sounds.

I met with my radiation oncologist and hour after my MRI was finished. Good news! The spots that appeared last time have not grown, and they did not stand out once the contrast was injected (which they did last month). He thinks the spots may have been blood (like a scab?). The good news is I don't need radiation, yet. Another MRI is scheduled for June 29th.
Lucky me - getting another IV started.

Already to go in the tube. Can see the bottom of my blue flip flops and the tip of my nose. I get very claustrophopic, so have my face covered, and it is quite cold in the MRI room - so I get covered with a heated blanket.

My yard looking much better

2007-05-14T14:37:00.000-07:00

Prom Pictures

2007-05-14T14:21:00.000-07:00

Kathleen & Cal - An ode to Sweden
Can't miss these two!
The paper bag dress, very creative
The group - boys are hidden in the back
The dragon boat team members

The dragon boats - no one made it to practice the morning after prom!

Quick Update

2007-05-11T07:08:00.000-07:00

I haven't posted in a while, so figured I'd just post something.

First, a treatment update. I have done well with this round of chemo. I do not seem as tired has I have been. I have gotten ill about four times - no nausea to warn me - just boom, run to the bathroom. I also forced myself out of bed the day after chemo, rather than lay around, and I think that has helped. I had a bizarre side effect on Monday - I woke up with extreme swelling in my hands and legs (well from my calves to my toes). I felt like I had on those plastic gloves the doctors wear - except too tight and filled with air. I called in, and it is not a known side effect from the drugs I have been given, so I was told to monitor the swelling. The swelling went down through out the day, and hasn't returned. Just another little surprise to keep me on my toes. I have my brain MRI on the 14th and CT scan on the 15th; the next phase of my treatments will be determined from the results of the tests.

Prom went off without a hitch - Kathleen accomplished her goal, she and her date practically glowed in the dark. When she saw the pictures, she realized what I had been saying - that cobalt blue and canary yellow is kind of a gaudy combination. At least they had no problem finding each other! Her friend that made her dress out of Trader Joe bags was certainly more unusual... I'll try to post pictures this afternoon. With my fancy digital camera I managed to take 150 really bad pictures instead of the 24 really bad pictures I used to take when I used film.

Saturday, I went with some friends from work out to a nursery in Estacada (i.e. the sticks). It was well worth the hour+ drive, because the prices were amazing! We filled up the back of a pickup and a trailer with plants. I spent Saturday afternoon and Sunday planting. My yard is looking great, but boy is it big, and there is a lot more dirt to be filled. I think I'll run out of money well before I run out of planting area.

I worked all week in the morning. Had a couple issues that I needed to go in to the office to correct, but by Wednesday, I was up an running just fine. My "office" is the dining room table, but I get to look out the window, which is nice; at the company office, my group is in the geographic center of the building, surrounded by a sea of cubicles - not much daylight there :)

I was worried that I couldn't remember how to do anything. I did have brain surgery after all. But, so far, so good. My boss gave me an extra nasty debugging project as my welcome back gift (though I don't think she knew it was that awful when she assigned it to me). I haven't figured out the problem, but I don't think it is because of the surgery - its just a super elusive bug (like an overflow, off-by-one error or memory overwrite). I feel so loved!

Well, I am going back to the nursery today with my neighbor. She saw all that I bought and the price that I payed, and she decided to go out there too. I tell you, this gardening thing is like an addiction. I have replaced cigarettes with plants. It probably is a much healthier choice.

Back to Work

2007-05-03T17:15:00.000-07:00

I have officially started back at my job. Haven't done much yet, I've just been my new laptop set up, but I did go in to the office on Tuesday and Wednesday for half a day. Felt good to get dressed in something other than sweats and do something other than go to a doctors appointment. I even went to a Sand in the City meeting, as I decided that I will carve again this year. But, this year I think I will cover up and wear sunscreen, not go for the maximum-sun-exposure-in-a-day thing that I tend to do. I will go into the office tomorrow, attend a meeting and hopefully finish getting the computer setup. Once I have the computer at home then I plan to work every morning, well every morning that I'm not getting scanned or at the doctors, etc. I'll probably not work the couple days after chemo too :)

On the home front, Glenn did well in his races, his novice 8 boat took gold, he did race on a 3v 8 (3v is the third string varsity) and that boat took the bronze. He raced on a novice 4, they came in 2nd in their heat, but there wasn't a final for that event - due to a 3 hour delay on Saturday. So he's all happy and proud. Now to get his grades up, that's the next challenge. He's not doing all that well in school, and I had a meeting with his teachers today. We came up with a game plan, and if successful, he won't have to face summer school. Keep your fingers crossed! I have just not payed enough attention to his school work like I have in the past (got a few other things going on), and it shows...

Kathleen just started her IB (International Baccalaureate) testing. She had part 1 of her English test today, and part 2 will be tomorrow. Next week she'll test in History and Math Studies. If she does well, OSU will give her credit for English, perhaps for the other two classes as well. She brought her cap and gown home last week, and we both almost cried when she put it on. Prom is tomorrow night, so tonight will be spent flat-ironing her hair (she has SO MUCH hair, it takes 3 hours to do!) I offered to shave her head so it would be low-maintenance like my do, but she didn't go for it. Imagine that!

I will try to post again soon, even if it isn't interesting!

Round Four Complete

2007-04-26T10:39:00.000-07:00

First of all, I'd like to wish my mother a happy birthday today. Mom, I will try to call you later on!

I had my fourth treatment yesterday, and as usual I was in there for about 7 hours. I think the infusion part was slightly shorter, because I spent more time asking questions than I usually do. I have been visiting 2 lung cancer survivor websites, which are extremely useful, but realized that I did not know as much as I thought about my diagnosis. Which led me to pester my doctor with all kinds of questions, and I made him show me every scan again. I have to admit, Dr. Reynolds is endlessly patient, and answered everything I threw at him. He also came over to talk to me a couple times when I was getting treatment to see if I had anything more for him!

What has been bugging me was where is my primary tumor? I don't recall every being told, and looked back through notes, so that was my number 1 question. Turns out, it is unknown. They suspect it is around the lymph node area, but no test has shown any tumors in my lungs. The sub-centimeter spots in my lungs never lit up on the pet, and have not changed in any way, and the doctors are now thinking they are scars, perhaps from a previous infection, not cancer at all. That does not change the fact that 3 lymph nodes were positive for cancer, and the biopsy of the brain tumors indicated lung cancer. So, though it is unusual, my cancer pretty much metastasized instantly. I guess the first cancerous cell decided my lungs weren't a happy place to be and hit the road looking for a friendlier spot to set up shop...

As for what is next, I have my brain MRI on the 14th, meet with the doc to see if those 2 spots have grown, and if so, probably schedule radiation. I have a neck to knees CT scan on the 15th. My 5th chemo is scheduled for the 21st (I asked to have it move from the 16th as Glenn is in the NW regionals the 18th-20th and Kathleen is in the Rose Festival dragon boat races June 9th-10th - neither of which I could attend if I kept on the current schedule). If I have to do brain radiation, chemo may also be put on hold or modified to a lower-dose weekly schedule. Also, based on the results of the CT scan, I may be done with chemo for now if lymph nodes are the same size as the last CT scan. Dunno. I will focus on yesterdays treatment doing its thing, and visualize the dots in my brain as being eaten up by Ms. Pacman!

As of yet, I am not wiped out by this treatment, my face is beat red as it usually is the morning after, but I was able to get up and do things this morning. My eyes are starting to hurt, and I'm beginning to feel like I'm getting the flu, so its probably on its way. All in all, feeling rotten for a few days is a very small price to pay to kick cancer's butt. My blood counts are all lower than when I started, but still within normal limits. I am slightly anemic, but the nurses seem to think that I am tolerating the chemo very well. (knock on wood, again).

After chemo yesterday, I spent the evening getting Glenn packed up. I thought I had it together, but no, couldn't find half of what was needed, like his duffel bag, so it ended up being a 3 hour panic packing ordeal. This morning we got up at 4:45am, and at least I felt fine. I only had to go to his room every 10 mins for 1/2 hour before he moved. By then Kathleen had gotten up to go to her dragon boat practice, so between to 2 of us we finally got him out of bed! He is very nervous about the trip, mostly about keeping track of his things. It must be very scary, taking a 4 day trip to another country without your family. I think he'll do just fine. He'll also have time to bond with his teammates. Wish him luck! If anyone is interested, the Brentwood regatta has a website, that looks like pictures will be posted daily, http://regatta.brentwood.bc.ca/
Glenn is with the Rose City Rowing Club, Boys Junior A Novice, and will be racing on an 8+ (Friday, race 33, then if they qualify, Saturday finals race 62), and on a 4+ (Saturday, race 128, and if they qualify, Sunday finals race 166). He may get to race with the varsity 3v boats, as they may not have enough boys show, but won't know that until he gets back.

Well, I have definitely babbled enough for one day. Think a nap sounds good!

Round #4 Tomorrow

2007-04-24T11:00:00.000-07:00

Not much new with me. I'm feeling OK except for what seems like an eternal headache. Not debilating like the ones in January, but annoying just the same! Am having difficulty sleeping again, so will talk with the doc about it tomorrow. The numbness in my fingers seems to be less, but for some reason seem to be swollen. Not much fatigue this time; I have been puttering in my yard and been able to get outside quite a bit.

On Sunday, Glenn had a race close by (in Vancouver, WA), so I got to see him race. Well, see part of a race anyway. With crew they start so far away you generally can't see them until the race is halfway over. Weather was nice and warm, so it was a good day.

Looking accross Lake Vancouver - 3 boats are just visible

Glenn's boat - first accross the finish line! (He is in the bow)

He will be going to Mill Creek, BC, Canada, leaving Thursday morning (at O-dark thirty) to participate in the Brentwood Regatta, and will return very late Sunday night. I'm pretty sure I will be able to get him there Thursday morning, but need to get his things together today. When they are not in uniform, the kids are supposed to dress nice (button down shirt, tie, slacks - no jeans and tee-shirts!) I'll have to get his things ironed, but knowing him they will be wrinkled instantly.

Kathleen decided on what college she will be attending next year; Oregon State University is the winner! Go Beavs! I am happy with her decision as 1) it is the cheapest 2) it is not all the way accross the country and 3) she can easily come home, the drive is less than 2 hrs and 4) it is a good school. The other schools all offered her academic scholarships, but not nearly enough to cover the astronomical tuitions. For some reason the government seems to think I can pay 1/3 of my gross income towards college. Don't know what formula they used to come up with that amount, but its totally unrealisitc. It doesn't take into consideration taxes, insurance or living expenses.

I must try to get everything together before tommorrow, so it will be a busy afternoon.

A Busy Week

2007-04-20T07:46:00.000-07:00

I realized this morning that I haven't posted in a week. That is not because I have been feeling poorly; to the contrary, I have been feeling pretty good! Also, there has been a lot going on, and I have been staying away from the computer.

Last Friday afternoon, my son came down with some kind of sickness. He had a headache, body aches and a 102 degree fever. He was supposed to go down to the Eugene area on Saturday for a race, but his coaches to me to keep him home. Good thing too, because he continued to spike a fever on and off until Sunday. Saturday night he became 5 years old again, and wanted his mommy to stay right by his side! I know my immune system is not so hot, and should avoid sick people, but when the sick one was my child, that rule did not apply. So far, I seem to escaped whatever crud he had (knock on wood.)

The yard cleanup happened last Saturday as planned. (Glenn was inside watching a Sponge Bob marathon). We were expecting it to pour, but luckily the rain storm moved through the area over night, so it was actually nice! So much was done, in such a short time. My warped fences are out, the 5 year pile of yard debris is gone, and new planting beds have been tilled. I want to thank everyone who came SO MUCH! I really appreciate it!

Cleaning up...

Afterwards...

I have been busy the rest of the week. Took a yoga class. Went into the office (had to change my marital status) and ended up there for 2 1/2 hours (and I never got to visit the 4th and 10th floor). Went to the bank to move all my accounts & loans into my trust.

I visited with a new naturopath doctor and wondered why I went, as the advise from the first doc isn't all that hard to follow. It appears that I am doing OK with my diet. I still need to up the veggies, and I am working on that. Doc #2 told me to get a juicer and try to drink them. Also, every day for the past 2 weeks, I have been drinking a smoothie (recipe from the 1st doc) and the numbness in my fingers has started to go away. I also seem to feel better, with more energy. One good thing came out of seeing a second doctor, is Doc #2 explained why certain foods were to be avoided; for example she told me that cancer loves sugar, especially simple or refined sugar - that I did not know - and knowing this has made it much easier for me to make better choices.

Last night I went to the "Together: Facing Lung Cancer" seminar. There were perhaps 20 people in the audience, with only 5 of them (including me) patients. The other 4 appeared to be in their 60s or 70s, and each one of them had a overprotective spouse hovering next to them, so I kind of sat off in a corner by myself. Much of the information given where things that I already knew. I did find out that there is not a single support group in the area focused on lung cancer. I did learn that lung cancer research is woefully underfunded: breast cancer receives 13x more $, prostate 10x, colon 8x. That even though lung cancer is the deadliest form of cancer, and the #2 most common kind of cancer in both men and women, very little attention is given to it. I also learned that 60% of people who get lung cancer have either never smoked or quit smoking decades ago, which should scare the pants of almost everyone. Somehow, the word needs to get out that this disease in not the province of smokers, that anyone can get it.

Radiologist Update

2007-04-13T09:27:00.000-07:00

I talked to Dr. Sueng yesterday, and the radiologist confirmed that the spots are "slightly suspicious" but to small to tell anything. In other words, next month, May 14 to be exact, they should be able to figure out if tumors are starting to grow. Yippee.

Also yesterday, I went to my appointment with the nurse practitioner at Project Quest. We talked about what was going on with me, and tried to figure out what the center had to offer me. Unfortunately, most of the groups are for breast cancer patients only. I am welcome to attend the "Eat to Beat Breast Cancer" series, as the diet for all cancers is probably the same. I can bounce any off my oncologist and the naturopath doc that I've already seen, especially in the herb/supplement area, to make sure it will be OK with the chemo drugs. I would get the added benefit of being around other women in chemotherapy. I am also going to attend the intro to yoga class that will be held on the next three Mondays.

The good news from all of this, is I gotten my act together. I am really trying to pay attention to what I eat, think and do. I have to admit I have been in denial, and subconsciously wallowing in self-pity. Initially, I looked into support groups, though admittedly not very hard. At the time, I did not find any lung cancer specific groups. If you have breast cancer, there are a ton of resources. Colon, Prostate and Ovarian seem to have resources dedicated to them. Lung, even though it is so prominent, does not seem to have much of anything.

I am going to a presentation at the convention center on the 19th called "Together: Facing Lung Cancer". The presentation is by the 3 major players in town: OHSU, Providence Portland and Legacy Emanuel, and is for patients and their caregivers. If there is a group, then it'll be represented there. If there isn't, perhaps one can be started there. If not, I can go to one of the general cancer support group, which all the hospitals have.

As far as other news, on Wednesday, a freak wind storm came up and swamped all the crew boats, with the varsity boys having to abandon ship. All were plucked out of the river by the launches, and the boat towed back to the dock. Lucky for Glenn, he was NOT on the river - he was on land with 1/2 of the team doing their weekly "erg" reps. Also, I heard that one of the Dragon Boats was also swamped - with team members rescued by the Coast Guard, but again my child did not have practice on Wednesday evening!

Tomorrow, is the second attempt at a yard cleanup party. Of course, the weather map shows a wall of water coming our way. But the weather folks say it should be over in the early morning. I have heard that we will proceed rain or shine. Being April, the temperature is fairly mild - mid 50s, so we should be OK.

I must go. Glenn lost his glasses, and broke his cell phone in half, so and am off the Costco and the Verizon store. Then its preparing for the yard party tomorrow!

Brain MRI...

2007-04-10T11:58:00.000-07:00

I have just returned from a Brain MRI, and appointment with my radiologist, Dr. Sueng. The report could have been better, but also could have been worse. He found 2 minute spots in the same area that one of the original tumors was in. He cannot tell if they are new tumors growing or some anomaly. He also thinks they are way to small for the radiologist to determine what they are, but we are waiting on the report to see. What happens now is I get scanned in a month to see if they are still there, and are growing. He told me "not to worry", Ha! It's not his brain. Believe me, I'll worry. I will just try not to obsess about it. I will call Dr. Sueng in a couple days to see what the radiologist has to say. If it is the worst case, and new tumors are starting to form, then the good news is the can be easily removed with the "Gamma Knife", with fewer side effects and less risk then another brain surgery. If they do have to go in again, I'll have them place a hinge and latch on the hole in my head to make it more convenient in the future!

I was given the go ahead to work part-time. I'll contact my oncologist, Dr. Reynolds, and have him send in to release forms, then contact my office so they can get a laptop ready for me. That should keep my mind somewhat occupied.

I also started going to another integrative medicine center here in town called Project Quest. They deal specifically with folks diagnosed with chronic or life challenging illnesses. The Komen Foundation donated a bunch of money to fund programs for women with breast cancer, but the Phsycologist I met with yesterday thinks that they accept women with all different kinds of cancer, especially in the Healing and Empowerment Program (HEP). So I meet with the director of the program on Thursday. They have a weekly group about eating to beat cancer - with cooking lessons and samples - that I could really use. They also offer yoga, guided imagery (I have a DVD that I am going to use for that too - Thanks Tauna), art classes, all kinds of things that would be useful. Of course my insurance doesn't cover this, but if it is helpful, it'll be worth it.

Woo Hoo

2007-04-05T08:27:00.000-07:00

I guess good news, as well as bad, comes in threes. This week the Fuller / Willcox / Turner / Smyth / Daniel clan had some good news for a change! First my step-father and niece have both gotten good reports on their respective health problems and are doing fine, then I got some very good news about my CT scans. I had a small tumor in each lung (sub-centimeter) and they are the same size or smaller (2.5mm). The doc said at that tiny size the measurements are not always accurate, but visually they appeared a little smaller. Then the larger one I had in my lymph nodes near the heart as shrunk, a lot. The before picture it was quite noticeable, larger then the aorta (which it is right next to). The after picture, it is almost gone - they are still larger then normal, but not by much!!!!

As my sinuses had mostly cleared up yesterday, and the CT reports were good, I received another treatment yesterday. The benadryl they pumped into me (along with tagamet and some kind of steroid before I received the Taxol and Carboplatin) really finished the job of drying me up! Again, I was in there a little over seven hours, passing the time finally writing thank you notes, watching a movie, crocheting (but it made my right arm hurt after a while) and reading (a little). I was really happy to get chemo. I came out of there determined, this time, to fight. Just think, I have rebelled against all advice, basically pretending I could return to "normal", and I responded well. Just think, if I actually listen, and follow the nutrition and behavior suggestions, I might do even better.

I have to go in to get another brain MRI on Tuesday. I hope the news is as good as my CT report! If my brain remains tumor free, I will get permission to work (part time - no more than 20 hrs - from home). It will be good to get back in the game, at least for a little bit.

I will receive one more treatment on April 25th. Then about 3 weeks after that, go in for another CT scan. If the cancer continues to shrink, then I get 2 more treatments. If it has stayed the same size, then I am done, for now. I will continue to get scanned / MRIed regularly. If there is anything growing in my head - I will get radiation and/or surgery. If the tumors in my lungs start to grow, or anywhere else in my body, then it is back to chemotherapy (the same kind - or different - will find out then).

But that is the future. For today, I am happy that I am in the 50% that the first line chemo works for. I am tired, and feel pretty lousy this morning, but am happy (very happy), any way.

Chemo is Working

2007-04-04T13:07:00.001-07:00

Steph sent word from her Chemo session that the 2 treatments she has gotten have reduced her tumors in her lungs and lympnodes. This is good news but we have no details other then that. Will post more as we get it. SHe is in her 3rd round of Chemo right now.... Good news!

Spring Break Over

2007-04-02T13:47:00.000-07:00

I had a busy week, the kids even busier. On Monday, Glenn's dad took him target shooting. On Tuesday, I took Glenn & three of his friends to an outdoor paintball course. Of course it was raining, but the park was 40 acres of forest. Don't know if it was old growth, but it sure was old, so walked around for a bit until I was cold and damp, then hung out in the car crocheting and watching Little Miss Sunshine on my portable DVD.

The kids, ready for "war"

Off into the woods

On Wednesday, Kathleen & I went to check out Oregon State University. She was accepted there (actually she was accepted everywhere that she applied), but looking tution costs, plus the fact she is now interested in studying Environmental Science or Forestry, OSU is the place to be for those subjects. It is an almost 1 1/2 hr drive, one way. Far enough to feel like she's away from home, but close enough to come home for the weekend. Campus is beautiful, and they have wonderful facilities. Dorm rooms are tiny, but they seem to be so everywhere (except at Mount Holyoke).

On Thursday, Kathleen went to the Cannon Beach with a group of her friends, and Glenn & I just hung out (as I was starting to get a sore throat). On Friday, Glenn and his dad went snowboarding.

Also, on Friday morning, I woke up with my nose running. I called to doc on Friday afternoon, but didn't realize they had called back until after they closed. On Saturday, I felt worse. We also ran out of heating oil (my bad - I had forgotten to keep track of the level). Peachy. By late Saturday afternoon, I felt really lousy, so I called the doctors again. Got the answering service, but within 3 minutes the on call doctor called me back, and after listening to me talk (and sneeze) called in a prescription for antibitotics. Luckily for me, they were ready about 2 minutes before the pharmacy closed.

Felt a little better Sunday, so with the kids help, tackled some of the housework. My son was being a butt-head, and I ended up with my feelings hurt. I guess with my acid tounge, they've learned from the best. I think I was sicker than I thought to let him get to me, but we all forgave each other after a while.

Today, Monday, when I woke up, I truly felt rotten. I was scheduled to get my Cat Scan today, so once again I called the doctors. They told me that it wouldn't effect the results at all, so I went. Won't get the results until Wednesday, and the while I was being scanned I thought positive thoughts. I hope the chemo is working. Would hate to be bald for nothing.

Overall with round 2 of chemo I haven't had as many side effects as with round 1. I have had annoying numbing in my hands and feet. This last week, I have had a great deal of pain in my right shoulder (above where the port is), and in my right hand. As my port isn't red or swollen, and I don't have a fever, it may be due to the amount of driving I did, or because I've started to crochet again. I hope it is nothing more than that.

I'm off to get my vaccum cleaner fixed. Tomorrow, I'll shop for the essentials so I won't have to venture out to the store for a few days. On Wednesday, I hope to get chemo. They may postpone if my cold isn't better, or I may have to get a different treatment - based on the results of the scan.

Keep positive thoughts, I know I will.

CHS Rose Assembly Pics

2007-03-26T11:23:00.000-07:00

Kathleen's Formal Portrait

K with Sandy & Me

The girls, after their speaches

K with her escort, Peter

Posing for the press (Princess Tiffany center)

Formal Group photo

Glenn with Mohawk

2007-03-26T11:14:00.000-07:00

Before

During

Scary, isn't it? I think I subconsciously made this off center so he wouldn't want to keep it :)

No "Yard Party" Today

2007-03-24T15:50:00.000-07:00

Living here in the beautiful Pacific Northwest, we all joke about how hardy we are, and the rain never stops us. Well, we lie. It started raining yesterday afternoon, and poured through the night. At 6:30 this morning, it was still coming down. Even my cats wouldn't go outside. So, we decided that the roto-tiller would probably sink in my yard, any weed that got pulled carry a pound of mud, and it was basically too miserable to play outside all day. Probably a good call!

Glenn went to Seattle for a crew Regatta yesterday afternoon and won't be back until tonight, so its pretty quiet here today. Early this morning Kathleen went to dragon boat practice (yes, they go out in all kinds of weather, only trees floating down the Willamette will stop them.) When she came home (soaked), she wanted to go out to breakfast, which we did, and loaded up on eggs, bacon, hash browns and toast. Mmmm. I guess my tummy is doing better when I can eat like that. Can't do that every day, but there is something about eating a plate full of cholesterol that warms the soul.

It's been pretty much a lazy day after that. Watched Casino Royal again. Napped. We may go shopping for frames as I'm picking up our portraits next week. Or, I just may walk to my couch and watch all the episodes of Desperate Housewives that I have on DVR.

The kids are on Spring Break this week, and we really have no big plans. It'll be nice to have them around, and am really glad it will be my "good" week. Glenn's birthday is Tuesday. His dad is taking him snowboarding on Monday, and for is "party" he wants to go paint balling. I found an outdoor place in Molalla, (about 1/2 hour out of town) and I pretty sure there's an old growth forest nearby. I'm hoping that I can haul him and his friends out to the paintball park, set them loose, then go for a hike. Lets hope it doesn't decide to pour. The normal misty rain thing is fine, and it's actually really cool in the woods in that kind of weather, but its not so much fun in a downpour!

I will try to post pictures this week, Glenn with the mohawk that I screwed up, Kathleen in her princess gown, etc.

Checking In

2007-03-23T09:00:00.000-07:00

Nothing much new to report. This round of chemo seems to be going well. I am tired, but not exhausted. The numbness (and tingling) seems to come and go in my hands and feet, so that is kind of annoying. I have felt a little queasy from time to time, but on the whole I don't feel that bad. I have the throbbing headaches when I lay down again, so I definitely think they are related to low counts as they occurred though week 2 of the first round.

I will finally get around to picking up today. Tomorrow, a number of my wonderful co-workers are coming over for a yard cleanup "party". It hasn't rained most of the week, (amazing considering the time of year), but of course a rain storm is predicted for tomorrow. But, this is Portland, and when is there a weekend without rain except in August? It will be great seeing people again! I've only been in the office a couple of times since January, and I really miss everybody.

It's weird. I moaned about going to work and needing a vacation or another sabbatical it seems like forever. Then, here I am off for 2 months, and I miss my job. I miss my friends at work. I miss the emergencies, the stress, the code, all of it. I have been at this job for almost 22 years and not going in is like loosing a part of what is me.

If the next scan turns out well, and I continue with the same treatment, I think I will be able to return to work on a part-time basis the week after the next round. Thankfully, my company will let me telecommute, so I can work in my PJ's or at 2 a.m. if I can't sleep! I think that working, even if it is something little, will be good for me.

Cleveland's Rose Princess...

2007-03-20T07:43:00.000-07:00

Is unfortunately NOT Kathleen (Boo Hoo). She looked amazing, her speech went off with out a hitch, we were blown away by her poise standing up in front of her entire school and talking. But, when the votes were counted, another girl was the winner. Kathleen handled it well, smiling the entire time. She was disappointed, but as she likes Tiffany (the girl who won), and has always spoken highly of her, she's OK with the decision. Apparently, the 1st and 2nd place girls were extremely close, so close the votes needed to be recounted a number of times. The Rose festival folks won't say who was in 2nd, so we are imagining it to be Kathleen (just for ego's sake).

Now that the whole princess thing is behind us, I can finally rest. This weekend and yesterday, I had to really push myself to keep going. At times it was very hard, but I had to keep going for my daughters sake. I have felt sick a number of times, but one of the anti-nausea medicines work well for me (thank goodness). Luckily, I haven't had much of the joint pain that I experienced last time. This time, my bonus is numb finger tips and toes. Not easy to put on earrings or walk in heals when your fingers/toes are numb! I'm just glad I didn't fall on my face!

I am going to take today as a down day, I have to go through bills and do a little paper work, most of which can be handled from bed. The house can stay a disaster for another day. If anyone comes over, I'll blame the cats :)

The chemo commandos are at work

2007-03-15T09:11:00.000-07:00

Today, the morning after treatment 2, I definitely feel lousy.

I am prepared this time, and kind of know what to expect. I rented 6 movies, mostly comedies, and am going to hunker down while the kids are at school. This weekend, I took my son grocery shopping, and had him pick out 2 weeks worth (well for him, maybe 1 weeks worth) of frozen dinners, had him put it in the freezers, so he knows what and where food is. I got food for my daughter also, but she is pretty good at foraging for herself, and not nearly as picky, so she should be set too.

Well I am off to bed with a cup of chamomile tea. If any of you try to call me today, do not be surprised if I don't answer, as the ringers are off for now. (Just leave a message.)

p.s. Petie - Borat is really, really sick. I didn't know whether to laugh or throw up!

Second Treatment Down

2007-03-14T18:15:00.000-07:00

Once again, chemo day wasn't so bad. At least this time I know what to expect!

Today was another marathon, checking in a 9:30, out at 4:45. I did manage to watch almost 3 movies, so that passed the time. I should do more something more constructive, like read or knit. I am usually unable to sit still long enough to watch an entire movie, so maybe it was time well spent?

I am scheduled for another Cat Scan on April 2nd. This will see if the chemo that I am getting is effective. There is a 50% chance that the medicine will do nothing, so I am trying to visualize the drugs as little commandos with machine guns blasting the hell out of those nasty cancer cells. (See, watching James Bond was time well spent :) If the tumors are the same size or smaller, then I will continue with the Carboplatin and Taxol for another 2-4 treatments. If they have grown, then I switch to a new poison.

I starting loosing my hair last Friday. I felt like a dog in the spring. There was hair all over everything. The balding process kicked into high gear on Sunday. Every time I ran my fingers through my hair, a pile came out. Being the good compulsive obsessive type of person that I am, I proceeded to comb my hair for an hour or so, getting as much as I could out. (My kids were totally grossed out by the way, my daughter went upstairs and wouldn't come down, my son wanted to help!). On Monday, I had 1/3 of my hair left (with a bald spot in back), and I was still shedding, so I borrowed clippers from my neighbor. My son did the honors and clipped the rest of it down to 1/2 inch or so. He then asked me to shave his head! I tried giving him a Mohawk, but unfortunately (or fortunately) I measured wrong and it was off center. I then took the rest of it off. (He had me shave him bald.) When he went to school (and crew) the next day, when asked why, he said to honor his mom who was fighting cancer. What a good kid he can be! Sometimes kids can surprise you (sometimes in a good way!)

I am playing pirate (or biker), wearing scarves. I have a oh-so-soft knit cap (thank you Kathy) that I wear at night. It's funny how much smaller your head gets when you are bald! The couple hats that I bought are big on me now, so I don't like wearing them.

I will try to post soon, though NOT on a Wednesday. I'll probably unplug the computer, the modem and the cable!

Me with Short Hair!

2007-03-08T14:18:00.000-08:00

OK, so I probably shouldn't post on Wednesdays

2007-03-08T12:52:00.000-08:00

Looking back over the past 6, well almost 7, weeks it seems the only time I've gotten depressed is on a Wednesday. I got released from the hospital, my mom left, I met with my oncologist, got chemo, got a 2nd opinion, and had all me crying fits on a Wednesday.

Its now Thursday and I feel better. I look at things from a new perspective. I am alive and feeling strong. My family has been incredible, but what is truly amazing are the people I work with. I cannot thank you guys enough! What a wonderful group of people you are! The outpouring of love and support is almost overwhelming. I knew there was I reason I stuck around for the past 21 1/2 years!

I have always been stubborn (to a fault) and marched to the beat of my own drummer. I know that will help me now. As a friend said, statistics are just numbers, but they are not MY numbers. Millions of people have fought this battle before, and many have won. Other than the fact that I have cancer, I am basically healthy. The amount of cancer in my lungs is tiny, and might not even show up on an xray. For once, being 30 lbs overweight is a good thing. All that is in my favor of being on the winning side of the war.

I promise you all that I will fight to good fight. I also promise to eat my vegetables, (as long as I can have the occasional dinner of yummy bread and cheese).

More Info on Second Opinion

2007-03-07T14:59:00.000-08:00

Keep in mind that this new Doctor at OSU did not have access to all the tapes and the test results. She was primarily quoting from the paper report and the general statistics on Lung Cancer. So the Doctors who are working closely with Steph at Providence are more sunny and generally more upbeat about everything. So they know her case the best and this woman today does not have all the info.

The whole brain radiation is also tricky because it wont defend her against future spreading of the cancer - it will only knock out what is there now. So she would have to repeat the treatment and perhaps suffer further reduction of her facilities. So Steph will get more info from Providence on if she needs to be more agressive and get the treatment.

We are trying to keep positive about everything and hope for the best. The longest time and perhaps some treatment in the near future which will be more effective at fighting Stephs cancer. Please send her positive vibes and prayers. People who get prayed for regularly do better with long term illness! Also please post comments!!!!

Stephs Bro - Peter

2nd Opinion

2007-03-07T14:03:00.000-08:00

Well, I just had my 2nd Opinion with the lung cancer specialist at OHSU.

The good news is that Providence is providing me with the same type of treatment that I would get at OHSU. She did say that NOT having the whole brain radiation may be a mistake, so when I got home I put in calls to my oncologist and radiologist. I understand they took they wait and see approach due to long range side effects, but it my case, I may not have the years in front of me that it takes for those symptoms to appear.

The bad news is, as I mentioned last week, there is no cure. There is no way to kill this cancer permanently. My treatment is to prolong my life, but the statistics are frightening. Of course, I asked for numbers, and I got them. Then I proceeded to cry for about 2 hours (once I got home.)

In two words, This Sucks.

I will go distract myself now, but I should never have asked for the statistics.

Thank goodness for Tylenol

2007-03-03T11:09:00.000-08:00

Last night when I was talking to my sister in-law, I wasn't paying attention and I grabbed the handle of a pot that had just come out of the oven, and burned the $*&% out of my right hand. Oh joy. Just as if I needed something else hurt! Kathleen put her first aide certification to use and bandaged me up, then both kids just looked at me a shook their heads :)

There is something to be said for that over the counter miracle Tylenol, especially the pm version. I took 2 of the pm version before bed. When I layed down, my head started throbbing, as usual, so I propped my self up so the throbbing would lesson. After about 1/2 hour my headache had backed way off. My hand felt somewhat better too. The next thing I know the alarm was going off!

Feels good to have slept. Headache is back this morning (the normal one I have had since the surgery), but nothing unusual. My hand hurts a little (it's in a big bandage, and 2 fingers with bandaids,) but I can still type.

Now I have to do my taxes, as I have to finalize the FAFSA and supply a copy of my return to a couple colleges (to finalize the financial aide applications). We submitted the FAFSA (the federal financial aide application) in January. It took me 2 days to get through me through it, and I hope I came close, as I did this when I was out of it (before the tumors were found, but while I was symptomatic).

I think I'm sure to get another headache from sorting it all out!

All that's in my head is a Brain!

2007-03-02T17:14:00.000-08:00

Woo Hoo! The MRI today was the same as the post surgery one. In other words, no new tumors are growing where the original ones were removed, and no new ones have appeared anywhere else. Dr. Sueng said that it needed to be be confirmed by the radiologist, but he seriously doubted that anything would be found. I will go back in 6 weeks for another MRI, and hope that it is good news again.

I've been worried because lately my head has been throbbing when I lay down, most noticeable the past 3 nights. After I had the MRI, and Dr. Sueng, I stopped int the Oncology office and talked with the nurse (I had called in the morning, and they wanted the results of the MRI before we talked about headache remedies).

I've been given a couple things to try over the weekend and I will call them on Monday. I had been taken off the pain killers with Tylenol in them (i.e. Vicodin & Narco) to protect my liver and put on pure narcotics (oxycodone), but I am allowed to try taking 2 Tylenol once a day before bed. I can use Tylenol PM for sleep (instead of the very expensive prescription). I hope that works. If that doesn't work, the next thing to try is aspirin or Excedrin (which is a no-no as it lowers my platelet count). But again, they feel that 2 a day would be OK.

I think that 1) I got the boo-hoos out of my system (for a while) 2) I feel better and have more energy and 3) my brain isn't growing tumors like weeds, that perhaps maybe I may just be able to sleep tonight!

On a side note: Kathleen just received her acceptance letter from University of Portland! Yeah! Except now she is seriously considering Oregon State (for its strong Environmental Science program). Have yet to hear from the New England schools, but with the recent change in events, really would like her to stay close to home.

She's Feeling a Little Better

2007-03-02T02:49:00.000-08:00

Steph did better on Thursday (3/1). The symptoms are less and she got her energy back which really really helped her feel better overall. Plus she spent the better part of the day expressing all the fears and sad feelings - so now that is out of the way, she is back to her old hyper self (A little anyways) She was really surprised at how exausted and achy she felt even tho she new it was comin. She really appreciates the coments on the blog - so keep them coming! They really help when she starts feeling blue.

She got back to doing some home projects and getting stuff done around the house - so the worst of it is clearly over. But in the future she can plan to be flat on her back for certain days after each chemo so it is not so surprising or hopefully depressing.

But with Kids there is always a lot to do - Kathleen is getting ready for he big day on the 19th of March when she competes to get to be the Rose Festival representative for her school. She is very excited and Steph and her have been getting organized to get dresses for that and for her Prom. So life goes on - nothing will slow a kid in high school down.

Thank you all for your very important support for my big sis. She really needs all of you right now : )

I Spoke Too Soon...

2007-02-28T13:09:00.000-08:00

I guess I'm slow, but the side effects really didn't hit me until Friday. I then felt like I had the flu, aches and pains everywhere, then tired, oh so tired. I have been laying down, or sitting in my recliner, for the better part of every day since then.

I had some energy on Sunday, and cleaned out the office (though I did that by moving lots of it to my dining room table - which is now a disorganized pile of papers, books, and probably bills).

I have felt sick several times, the worse was on Monday after I had a mini-rebellion and ate Jalapeno Cheese Bagels with creme cheese, and didn't eat a single vegetable or piece of fruit. Boy did I feel sick that evening, and got a killer headache again too. Thank goodness the medication I was given calms my stomach down.

Then last night I started feeling "blue". I still feel that way today, and hope that this feeling is gone soon. It's just hard to remain happy all the time, especially being alone most of the time and thinking about the future, which may be all to short. Everything I've read doesn't provide much hope, as there is no cure. I pray that, if not a cure, a permanent treatment is found soon. It sure would be nice to see my son graduate from high school, my daughter graduate from college, not to mention weddings, grandchildren, and all that good stuff that I was looking forward too. On top of that, this is NOT how I envisioned my newly single life :(

Well now that I've written that I do feel a little better. Maybe I'll take a little walk now that its stopped raining for a minute or too.

I have my 1st Brain MRI coming up on Friday, with an appointment with my radiologist immediately after. I really hope that there aren't any new tumors. Though the prospect of getting a tattoo on my soon to be bald head sounds intriguing, I really don't want to get a daily dose of radiation on top of Chemotherapy.

I will post again on Friday night, after I get my results.

Lets Hope They are All Like That

2007-02-23T08:06:00.000-08:00

I came through round 1 just fine. Wednesday night felt a little woozey, so started taking the anti-nausea drugs they gave me. Slept 10-12 hours on Wednesday night too (setting the alarm a couple times to take the meds). It may be that when I got my new round of Ambien (the sleeping meds), that it was double strength (I of course didn't read the label). I was supposed to cut the pills in half! Yesterday, I was tired, so didn't do much, fed the cats, watched "Office Space" and napped. Felt good enough to go to a parent's meeting last night (for prospective Rose Ambassadors).

Today I feel OK, and will putz around the house, perhaps pick up after the tornado that seems to have gone through the house. Sometimes I am amazed on how much damage the kids & I can do in 2 days!

1 Chemo Down

2007-02-21T17:55:00.000-08:00

Steph had a basically an easy day getting her first Chemo treatment. She went in and met with Dr. Reynolds and he showed her the results of the Pet scan. Good news there. The spot on her liver and her Uterus were negative for cancer. There were 2 lympnodes in her left lung near her heart were positive for cancer. There was also a confirmed spot in her right lung. This type of Pet scan does not check the brain, but that is why she is getting basically monthly MRI's.

The Chemo itself was pretty boring. The port (implant) has turned into a blessing because it made the actual proceedure a breeze. On the port itself, Steph has found this thing to be very sore due to the fact that they had to cut into her chest muscle to insert the port. The Doctor has said it will be very sore for a few weeks. The Naturopath has said they can do accupuncture on it and relieve some pain if needed.

Back to the Chemo. They loaded her up with Anti-nausea drugs and she is doing very fine without any nasty feelings. So far so good - but time will tell if she may get a stronger reaction later today or in the next few days. But the anti-nausea meds will last for 3 days. So we are hoping she wont get major side effects this time. The effects of Chemo are cumlative so in the next sessions she may start finding it hits her harder. But she is very happy with the first session.

Steph has also elected not to be in the Tarciva drug trail. The way the dates for Chemo fell, she would have had to wait 2-3 weeks to even start Chemo. The drug company that makes Tarciva wants the person who enters the trial to have not had any treatment for cancer at all. So she has elected to not do the trial. She wanted very much to get going with Chemo.

So that is it! Will post more soon.

Tomorrow is the big day

2007-02-20T18:13:00.000-08:00

Stephs first Chemo appointment is tomorrow. She will meet with Dr. Reynolds for about 1/2 hour before hand to go over the results of her PET scan. This will give her a bigger baseline for what the cancer looks like in her lungs. She had her hair cut very short this week and she really likes how it looks. We are going to put a picture of her up as soon as she sends it in to the blogger administration.

Steph also saw the Naturopathic Doctor on Monday. He put her on high does of Vitamin D and Fish Oil (Omega 3's) and took her off almost everything else. He can also perform accupuncture if needed.

She has been going kinda crazy getting ready for the Chemo. She got her freezer delivered on Saturday and her and the kids bought some frozen stuff. Also folks from her work (Harland financial) have been really sweet and are hooking her up with a ton more meals (Thanks Guys!!!!!).

Also she has been going beserk getting all her big projects lined up to get done around the home so she is not freaked out when they are doing work around her on Chemo. Lastly Steph is still having trouble sleeping when she is not on Ambien - She can sleep 8, 9 hours when she does take it - but wont sleep a wink without it. However, the Naturopathic Doctor told her not to worry at all about taking it for now till things calm down a bit.

Will let you know how it goes.

Second Opinion Scheduled

2007-02-15T10:28:00.000-08:00

Everything went very smoothly yesterday, as my brother posted. After have my head operated on, this was a piece of cake. I am a little sore today, and its raining cats and dogs outside, so I'm glad I've been banned from driving (until 2 pm this afternoon). I don't think I'll get dressed until tonight when I have to go pick up my car.

I finally got in touch with OHSU, and have a 2nd opinion/treatment evaluation scheduled with the lung cancer specialist there. My appointment is on March 7th, and the nurse at OHSU told me to go ahead and get my first chemo treatment. What the doctor will do is review the pathology reports and my various films/scans and the doctors notes. She'll then let me know what, if anything, they do at OHSU and what other options are available, particularly if the treatment I get at Providence doesn't work. The nurse said there are currently no clinical trials for my type of cancer, but that doesn't mean there isn't one coming up. Also, OHSU is a National Cancer Institute designated facility, which means (I think), that when a break through occurs, they are one of the first to have access to it. It also means that I'll get another $500 from AFLAC, which won't hurt :)

On a totally different note, if anyone reads this today, keep your fingers crossed for my daughter, Kathleen! She has her first interview with the Rose festival folks at 4:00 this afternoon. She as put her hat in the ring to be a Rose Ambassador (Princess)... Apparently only 6 girls can participate in the finals at each high school, and Cleveland had 11 or 12 girls that want to run. This interview will decide the 6 who will be in the finals. I am nervous and excited for her at the same time, as she has wanted to be a Rose Princess since she was in kindergarten!

I have babbled enough for today, so I am going to be a couch potato and enjoy this rainy day!

Steph is Out of Surgery

2007-02-14T18:20:00.000-08:00

Steph sucessfully had her implant put in today. She was in the hospital from 9 tillabout 4. No problems with the proceedure. The doctor installed the device under collar bone. It will feel like a small bump. It looks like a Stethoscope without the ear pieces. On the flat end is a membrane that sits right below the skin. When they put a needle in, it goes though the membrane and into the pod like end. Then the chemo flows down the tube and into her veins. Also blood can be taken this way.
No showers (again) for 2 days. She is getting tobe an old pro at this stuff.

PET Scan

2007-02-13T20:38:00.000-08:00

First of thanks to my little bro for starting this Blog for me!

This morning I took a walk with my friend and neighbor. We walked every morning for years until last fall when I changed my schedule. It felt good to get out and walk and yack with my old friend.

I also had received call from the research nurse at Providence. I have "passed" the initial pre-requisites for a clinical trial for an oral chemotherapy medication called Tarceva. Now she has to send a tissue sample to the drug company. She explained how it worked (its an oral chemo used currently as a second-line defense against advanced non-small cell lung cancer.) I didn't take notes so have forgotten whatever else she said (though there were a lot of words that I had never heard before). I also asked about clinical trials for my kind of cancer going on elsewhere, specifically OHSU. She looked it up, and there is nothing going on locally. I asked her if she knew what treatment they offered at OHSU that was different, and she said that if they wasn't a clinical trial, then generally they did "standard of care" (I don't know if that is the right term). But, she felt that it would be basically the same as the treatment plan Dr. Reynolds has for me.

I didn't get a call back from OHSU until I was getting ready to leave, so did not have time to talk to anyone about a second opinion, and won't have time tomorrow, so will have to try again on Thursday. Will probably try to contact Sloan Kettering in New York too.

This afternoon I had a PET scan. I checked in to the Nuclear Medicine facility at Providence, and was escorted back to a little room. They had me get comfortable in one of those lovely hospital beds, and proceeded to inject Radioactive Glucose into me. (I think my pee will glow in the dark now). This solution is absorbed by cancer cells and other fast growing cells faster than everything, and will stand out on the scan. This will give the doctors a baseline of where and exactly how much cancer I have. I will get another one after a couple months of chemo to see how well it is working. Anyway, after being injected with this lovely stuff, I was covered with a warm blanket, the lights were turned off and I was told to relax. So I kinda napped for 45 mins. Then it was time for the scan. The PET scan machine is similar to an MRI tube, but not as long - about 2-3 feet of my body fit in at a time. I had to lay on this narrow curved bed, and stretch my arms over my head. The scanner is narrow like an MRI, so you get claustrophobic in there (I have pills that I take for that). Unlike an MRI, it is quiet. Then they photographed a 6 inch section of me at a time, starting with my head and working down. This whole process took about an hour. Not much fun, as holding still that long things tend to cramp up, but not to bad either.

After that was done, I walked to the vascular surgeons office for a consultation to install a port where I will get chemo injections. I will also no longer need to be poked in the arm for blood, which will be a good thing. The surgeon was very nice, and explained in much detail what was going to happen, and the risks. So much detail that I almost passed out (I really am a wimp). I had thought the surgery was going to be next Tuesday, the day before Chemo day, but she doesn't do surgeries on Tuesday. So, I had a choice of tomorrow, or go in at 6 am next Wednesday, have surgery then go straight to chemotherapy. I chose tomorrow. I go in at 9 and should be released at 3-3:30. The fun never stops!

Second Opinions

2007-02-12T19:09:00.000-08:00

Steph is getting closer to getting a second opinion from Oregon State Hospital University in Portland. She is trying to get into see them before she starts Chemo on 2/21. It is better for her to change where she will get treatment before she starts. Right now they are pretty booked up until 2/21 for an appointment with the Lung cancer doctor. So she is trying to push off her Chemo for 2 days until Friday 2/23. She will still have her PET scan this week. We are also confused a little by her cancer. Whe still need to find out why the largest amount was a tumor in her brain and there is a much smaller amount in her lung.

This OSHU option is important for several reasons. Kricket Siedman (Our step-fathers Niece) is a high-level cardiac Doctor at Harvard and she felt strongly that Steph should get her treatment from a University Hospital. Also the national cancer alliance recommended OSHU as did Dr. Reynolds as a good option. OSHU also has many more clinical trials for lung cancer that are not available at other places. So if she choses and is eligable, there may be more treatment options.

Over all Steph is OK but today she over did it today. She spent over 1 hour on the phone with National Cancer alliance to get the referral to OSHU. She also had a lot of appointments that drained her. So she needs to take care of her energy. She talked to her neigbor accross the street who got Chemo at Providence and was encouraged that she will not feel as run down and bad as she expected.

Picture Day!

2007-02-11T06:07:00.000-08:00

Steph is having a family portrait done today with Glenn Jr. and Kathleen. She wants some nice shots before she takes on the Kojak look.

She feels good and has been very active the past few days. On Saturday she spent the day getting the kids ready for Cleveland High Schools winter formal. Got the kids clothes, got them ready, etc. Sounds fun.
She is also working hard to get the house in shape. There are a couple rooms in the house that get uneven heat, and she has some plumbing issues etc that she wants done before she starts Chemo. Lots and Lots of phone calls to finalize her divorce from Glenn senior, and setting up all her legal affairs. She is amazing with all the details she remembers.

This is also the first week that she can actually get her head wet. The 75 surgical staples came out rather painlessly last Friday, and she has finally been able to put shampoo and water on the site of her operation. The scar is totally not noticeable unless she points it out. It goes right down her hair line and she has to part her hair to show it to you. They did a fantastic job!

We are going to Sloan-Kettering to get an second opinion or at least an evaluation. Steph also did an on-line evaluation with Seattle Cancer and found that the treatment her Portland Dr's have given her is exactly the same. She seems very comfortable with Portland Providence - and that is important.

She also has an appointment next week with the Providence integrated medicine Doctor who will do a complete evaluation on her suppliments, and vitamins she is taking. He can perscribe additional vitamins, herbs, and a program to strengthen her imune systems and get her in top shape to fight the cancer and not get run down from the Chemo.

Steph was a little tired today

2007-02-08T18:35:00.000-08:00

Steph got worn out today talking on the phone to everyone. She is very excited about this blog and the idea of people getting information on-line.

Steph has had a lot of trouble sleeping and was finally able to sleep well the last two nights.

The other good news she got was regarding her AFLAC coverage. She was in a 30 day waiting period for her new supplimental insurance. At first they said she would not get her coverage because her diagnosis was during the waiting period. But they have determined she will be fully covered. It is a big deal because it provides alot of extra coverage beyond regular health insurance.

We are still working on getting a second opinion. The two best options are Seattle Cancer and Wellness center and OHSU in Portland. We dont know what other treatments are available or what additional trials these places might have, but we will at least get an understanding of what is out there.

She is still getting all organized with all her paperwork and getting all her ducks in a row so she has little to do when the Chemo starts. The next big day will be the PET scan next week.

Appointment with Dr. Reynolds

2007-02-07T16:43:00.000-08:00

Steph went to see Dr. Reynolds the Oncologist on February 6th for her first introductory appointment. He confirmed the diagnosis that she has non-small cell lung cancer. The same basic disease that Dana Reeve had.

The appointment was very long and we got a ton of information handed to us. There is an poor long term outlook and we are considering a second opinion just because. The Dr. explained what the pathology report showed and then took us thorugh the CT scans of Steph's entire body. There are some suspect lympnodes inside her left lung, and several spots on both lungs that appear to be cancerous. There is also a spot on her liver that is suspect, but less certain. The tumors in her brain came from her lungs. She ws lucky to get symptoms from such small cancer (the big tumor was only 2 cm) - but it was in such a place that it caused swelling and her brain to be off center. This is what caused the big headaches.

Next week, Steph will have a PET scan which will confirm the outlines of her cancer more sharply. A PET scan puts a sugar into the body which they can watch being taken in cells. Cancer uses this sugar much faster then surrounding tissue. So what is not known on the CT scan will be more defined on a PET

The treatment the Doctors have proposed is to do Chemo that will take place every 3 weeks for about 4 months. These sessions will knock her out with achey exaustion for 3-4 days. In week2 she will feel much better, and then in week 3 she will feel fine. After 4 months, she will be re-evaluated. Depending on how the cancer responds, she will have some more chemo at some point (most likely).

Steph is not fond of needles so she has elected to have an implant under her colar bone. This implant will lie below the skin but can be accessed to get blood samples and to put the chemo in. Steph is also considering a trial drug that may help fight the cancer. In addition, the Providence medical center has a alternative naturopathic medicine built in to the hospital.

There is no known cure for this condition, but Steph is secretly a big rebel and has decided that this will not apply in her case. We are totally focused on the Chemo being super effective against the cancer. We hope to buy her time until a treatment can be found.

The Doctor gave us 2 main reasons for hope. One was that fact that it really is 'just a little bit of cancer" and very small. The other is Stephs youth and health - versus a 60 or 70 year old. It can help her fight the disease.

Steph appreciates all th cards and letters she has gotten as well as all the phone calls. She felt sort of anonymous at work and was so thrilled with all the outpouring she is feeling from her co-workers. We are telling the kids, Glenn Jr and Kathleen to keep focused on their lives and keep things as normal as possible. They have enough to worry about with their busy teenage lives!

We will try and add to this post as often as possible.