End-of-Year Catchup

I have been remiss in my posting. Partly because we had family visiting over the holidays and partly because we were in limbo between appointments. Here's what's been happening.

My whole immediate family was here over the holidays. We haven't all been together in the same place at the same time for over 20 years. My brother and nephews drove out from Iowa. Mom and Dad flew out. We didn't exchange gifts as having us all together was gift enough. It was a great holiday. We were our usual silly selves, almost worthy of our own reality show. The Reller sense of humor is nothing if not different.

We spent 8 hours yesterday at the University of Colorado Hospital. They did blood/urine work and then an EKG. The creatinine levels can go up if the kidney function changes. I had an ultrasound to check this the day after Christmas. Anyway, they didn't like my numbers or my EKG, so I went to infusion for a couple liters of fluids. Then went and got retested. Things looked better so they sent me to radiology. After drinking two bottles of barium they called me back. Then I waited for quite awhile while they debated whether my levels precluded me from having the scan. Finally I was taken back. As soon as I was on my back, I threw up the second bottle of barium. My worst fear was that they wouldn't be able to do the scan and I'd have to go through all this again. Fortunately that wasn't the case. I got a call this morning from the hospital to schedule a liver biopsy on Jan 9, as that is part of the study. We are waiting on confirmation as to whether I am accepted into the medication part of the study.

We are now into pain management. Before we went to Mexico, I was having upper abdominal discomfort. Now it has moved beyond discomfort to pain. I'm taking time-released Oxycontin trying to stay at a steady level. It makes me a little tired, but I feel like I can function fairly well. So, don't read anything into my typos.

I have sent most of our Christmas cards and letters out electronically. We still have a few to write out and send. I'm still working on wedding thank-you cards. A girl can only do so much.

We have been needing to replace our bed for a long time. It is getting uncomfortable particularly with pain. So we ordered a Sleep-Number bed. I think that will help with comfort and getting a more restful sleep. I sleep a lot, so figure it's important to have a comfortable sleep. Also, got a set of 600 thread count sheets at 75% off. Should be pretty nice.

My plan is to continue working on my office. It's hard to get caught up, but I am making progress. I've been cut off from my remote access to work. It's kind of a bummer, because all I really did was check what's going on through the portal and look at the employee ads. But, I expected that, and I still talk to many people at work, I should be able to stay in the loop.

The rest of the day, I am going to laze and rest. The last couple of weeks, while being fun with family was also a little exhausting. It is good to go back to some semblance of 'normal'.

Happy 2009 to everyone and thanks for riding along on this journey. Love, Jane

Study

We met with a Dr. at Anschutz Cancer Pavillion at University of Colorado Hospital yesterday afternoon. He and his assistant reviewed my records. The assistant did a gross physical exam and asked questions. Then the doctor came in to talk. He had a Phase II study available for a drug called AZD0530 for people who have previously-treated advanced pancreatic cancer. The hope is that the study drug blocks the growth signals in tumor cells and may stop the tumor cells from spreading.

The side effects are not bad, and it requires a minimal amount of time. Two pills a day, blood work after two weeks, and each cycle lasting 28 days. There may be a CT scan before starting. There will be a tumor biopsy after the first two months. If things look good after two rounds I can just continue on it until it is no longer effective.

It looks much easier to work around than the Phase I studies I had looked at. I'm hoping that this will be my magic bullet. I am waiting for a call back to schedule my first appointment to sign the consent forms, etc. There will be only 5 people in this area participating in this study encompassing 36 people around the country. I told the Dr. to save me a seat.
So, hopefully next week I will have an appt set up to get the ball rolling.

I've been taking Percocet at night to relieve some upper abdominal discomfort. The Dr. told me to stop taking it as it has Tylenol in it and that is not good for my liver. He gave me a prescription for Oxycodone which doesn't have the Tylenol. He also said that I should be taking it to get my discomfort down to a static level, rather than suffering during the day and then only taking it at night. I told him that it would throw a curve into my independence and ability to be able to do things, as it can make me drowsy. He said that it's much easier to maintain a pain-control level by keeping it consistent and that perhaps I might have to give up a little independence. Later, he said that he has other drugs that are longer lasting and that might not have an impact on my driving, etc. We shall see.

My mother is in town, my brother and nephews are coming on Sunday, and my father will be here on Monday. We are looking forward to a fun family reunion for the holidays. I hope everyone reading this has a great holiday and I send best wishes for the new year.

Hola!

We are back from Cozumel, Mexico. Got home about 10:30 just before the temps dropped and it started snowing. I got very emotional as we descended into Denver and on the drive home, that my temporary escape from reality was over. I could have stayed there for much longer.

The weather wasn't as good as I'd hoped, but not bad. We lost out on a few days of snorkeling because of high winds. We did get a jeep for a couple of days and drive around. We did swim and interact with dolphins. We have photos and video. It was awesome!

We had a nice room at the resort and met really nice people, both visitors and locals. It was truly a respite from the world here. Cozumel is still a really nice place. You can still see some of the damage from hurricane Wilma. Since my original visit in 1985, I was happy to hear that they have put a cap on new building, and have set aside areas as national parks which are protected.

I think could live there. But, here we are back in reality. I have two doctor appts this week, one with my regular oncologist and one with the study doctor. My mother comes in Thursday afternoon, and soon the holidays will be upon us.

Maybe I'll try to stay on Mexico time for awhile. Sigh!

Hasta La Vista, Baby!

WAY TOO EARLY on Sunday morning we will leave for Cozumel, Mexico for a week. The temps will be in the high 70s to mid-80s with scattered showers and reasonable humidity. I can't wait. We are finishing things around the house and packing tomorrow. Our housesitter will arrive tomorrow night since we leave so early.

We played pool on Wed. I only played an 8-ball match, but won my three games consecutively. I also received my Christmas present from Michael early. He got me a leather pool case. I got to pick it out. My other one was very cheap and the zipper was broken. Other than good health, I couldn't think of anything else that I really needed.

I saw my oncologist on Wed. Saw the nurse practitioner today. I had an abdominal ultrasound on Wed to make sure that my increased discomfort wasn't due to a blood clot in my liver. Everything looked good, except for some 'sludge' (a medical term?) in my gall bladder. I will start taking pancreatic enzymes to help my digestion and hopefully that will help the gall bladder and my abdominal issues. I'll see him the Monday after we return. My blood pressure has been a bit high and my blood a little thin, so I'll need to be checked out.

I'll be thinking about all of you while I am relaxing and reading. ??? Perhaps we'll take a couple small excursions, but we will do a lot of relaxing things. No offense, but I hope it is cold here and warms up the day we get back.

Post-poned Appointments

University Hospital called this morning to reschedule my Thursday appt. The doctor will be out of town. They wanted to schedule it for next week, but we will be in Mexico. Ole! So, now it's put out until 12/18, the day that my mother comes into town.

I am concerned about having been off treatment for about 2 months by that time. I am having increased abdominal discomfort and other distasteful things. I will see my oncologist on Wednesday to check things before we leave.

Needless to say, these recent changes have me a bit worried. I've asked to have blood drawn for a CA19-9, so we can see if my tumor marker numbers have increased drastically. If so, and the disease is moving right along, will I have time to be off proven medications to test out unproven medications?

Right now I feel as if I am in a race. I doubt I will win it, but I at least hope to go in the right direction.

Cancer World

I just read an article my mother sent me called 'Chemo World' written by an oncology nurse. It was very well written and showed the author's insight into this world.

I've been thinking about the 'Cancer World' I now live in. It's almost like a parallel universe. Everyone in this world understands medical terms most nonmedical people do not. Seeing 10 people hooked up to IVs in the treatment room is old hat. You start to recognize people, and I've even run into a dog-world acquaintance I've known for years who is in treatment. It was odd to see him outside our normal venue of dogs.

We've gotten to know several of the treatment nurses on a more personal basis, as they've gotten to know us. They were excited to hear we were getting married. They loved the pictures. We've developed relationships with the doctor, physician's assistant, and nurse practitioner along with the medical assistants, lab techs, and schedulers. The radiation tech gives me a hug when I go in for my scans since I helped them get their current accreditation.

Everyone has made an effort to know our names and ask how we are doing. The times when there have been tears, they have all been very solicitous and comforting.

I asked myself at the beginning why people would go into this field. How can the doctors give bad news to people day after day? They know that many of their patients have a finite amount of time left. I suppose they get an equal amount of giving good news as well. "You're in remission", must be heaven to those who get to hear that. It must be satisfying to the medical team to know that they played a part in helping someone get well. I suppose they must also get sad about the people they tried to help, but lost the fight.

I know that the people in cancer world are mostly compassionate, caring, and interesting people. Those who enter the world voluntarily as caregivers are angels sent here to help those of us who enter kicking and screaming and in shock.

It's not a world I ever considered I would enter. As one of the people who has an uncertain outcome, I am in this world not by choice. I have seen the good in people on both sides of the world. I have seen people do what they need to do because they are not ready to go. It's not an experience I asked for, but I appreciate it for what it has shown me.

Dr. Consults, Pool, and Astronauts

OK, these topics are not alike, but they are what I intend to discuss here.

We saw an oncologist at the RMCC in Aurora, who is affiliated with University Hospital. We discussed my going into a trial. He said he also thought that now would be the time to do this before I try the Zeloda.

He has two phase 1 studies, one of which has two FDA-approved drugs where they want to study people taking both.

He is looking into whether there are any phase 2 pancreatic cancer studies. A study lasts about 8 weeks. It can be very time intensive. There may have to be daily visits at times, and some visits can last many hours. I would probably need to arrange transportation help, as Michael won't be able to take that much time off.

The Dr. said that you never know if you might get something that works really well. It's a crap shoot. We were a little worried about being off drugs if I got something that didn't work, but he said that in my current state of health, I shouldn't lose too much ground if I need to go to the Zeloda.

On 12/4, we have an appt with a renown pancreatic cancer specialist from Johns Hopkins. I need to review the two studies he gave me. We will find out more specifics about the studies and whether I am a candidate. After that, we go to Mexico for a week. WOOHOO!

I have played pool the last couple of weeks. Last week I won my 8-ball and 9-ball matches and also won a makeup 8-ball match. This week I also won my 8- and 9-ball matches. Up until last week, I have consistently lost. I think the more regular playing definitely helps.

Last Friday, since I didn't get a treatment on Thursday, I was able to attend a program at Ball with the shuttle crew who will be doing the Hubble repair next spring. I introduced myself to each of them and shook their hands. I also got the mission patch, instrument pins, and signed photo. It was really exciting to hear them describe their jobs on the mission. I don't know if I'll get to the launch or not, but it was very cool to meet the crew.

Tomorrow is the Turkey Trot. My family, many non-Ball friends, and many coworkers will be running/walking to benefit me and another employee with serious cancer. I'm looking forward to seeing everyone.

The Top 10 Reasons I Hate Cancer

10. It's physically uncomfortable.
9. All the poking and prodding.
8. Having a port sticking out of your chest.
7. Losing your hair.
6. Chemo brain.
5. Food tasting like crap.
4. Being beat up by chemo.
3. Weakening of your body.
2. Emotional roller coaster.
1. It fucks up your life.

Scan Results

The Dr. came in and got right down to business. It was obvious he wasn't going to give us good news. Monday's CA19-9 numbers have gone up about 300 points. The scan shows two new tumors on the liver, the biggest tumor has gotten bigger, and the nodules in the lung have also gotten bigger. There are a few other minor changes, but it all adds up to the fact that my crafty cancer can currently cream the chemo. (OK, it was a bad try at alliteration.)

The pancan is becoming resistant to the chemo regimen I've been on. It is also kicking my body's butt. So, rather than put me through another round of killer chemo, we are stopping the drugs I'm currently taking. We will meet with another RMCC oncologist in Aurora to see if I might qualify for a phase I study. Statistically, phase I studies are generally unsuccessful in treating a disease because they are trying different dosages, etc. But, since I am still in good health overall, the Dr. suggested I look into this before beating myself down with another drug right away.

If not, I will start a medication called Zelota. Anecdotally, people who have done well on Gemzar/Tarceva typically do well on this drug for awhile. It comes with its own set of side effects, of course. The other option is to do nothing, which would give me 3 to 4 months. I am not ready to quit. This does, however, give me incentive to get serious about getting my life organized. I will work harder at that.

The good news is that, since I didn't get treated today, tomorrow I will feel well enough to go to Ball for an employee event with the astronauts who will be doing the next Hubble servicing mission (which now is moved to April/May). I may not get to go to the launch, but maybe I'll get to meet the astronauts. That would be really cool.

Transfusion

I saw the Dr. late this morning. My platelets were VERY low and I was very anemic. I had all the symptoms he mentioned. We went next door to the hospital where I got a bag of platelets and two pints of blood. I was in the hospital from 2 pm until 8:30 tonight. I'm already feeling a little bit better. The good news was my white cell count was really good, so either I'm not fighting anything off, or the antibiotics have already kicked in. I will finish out the week with them. My blood was a little thin, so my blood-thinner dosage is a bit less for a few days.

Next Monday I will have my scan and have bloodwork/see the Dr. to follow up today's events.

Two of my sisters came by to visit me in the hospital which was nice. Michael was there of course. He wanted to know where they do the transfissions. (If you know Michael, you'll understand the question.)

I really hope that now I'll be able to enjoy the 9 days until my next treatment. The treatments are definitely taking a toll. Hopefully we can avoid this kind of thing so we can enjoy our week in Cozumel in about a month.

Not a Great Week

It's been a tough week. I've had fevers, chills, and weakness. Friday I started on a broad-spectrum antibiotic. The fevers and chills are a bit better, but I still can hardly walk up the stairs from the basement and I'm exhausted. My two weeks of feeling good are down the toilet. I'm seeing the Dr. this morning. Enough is enough.

Round 9, Day 12

Yesterday was R9D12. I got full treatment and a Neulasta shot. I had fever and chills all afternoon into the evening. My legs are kind of MS weak today. Despite the beautiful weather outside, I have spent the day inside resting.

I will have another scan on 11/10. We are hopeful that it will correlate with the last drop in the CA19-9 tumor-marker numbers. I am determined not to freak out this time waiting. Fortunately it will only be a 3-day wait until I go in for my next chemo on 11/13.

I am looking forward to a couple of weeks of good days. Hopefully it will start tomorrow. :-)

Round 9 Day 5

I mispoke about why I wasn't treated on Thursday. My platelet count was too low, a condition called thrombocytopenia. Today it was just barely where it needed to be, so I did get a full treatment. I also got a Procrit shot. Hopefully I'll be in good shape for treatment again in a week.

Major chemo headache today, so that's all folks.

Tumor Markers and Dog Shows

We went in yesterday to start round 9, day 1. My red cells were too low for treatment (my schedule was a bit off), so the Dr. decided not to treat me. I will go back on Monday and hopefully get back on track.

Today I found out that my CA19-9 tumor marker numbers have gone back down from 1350 to 1050. Whew! We suspect that my body is adjusting to the new regime and that hopefully the liver tumor that was growing is backing off. I will get the two treatments in this round and we will do another CT scan.

The Dr. said that everytime he sees me I look a little more beat up. I told him if he'd been through what I've been through over the past 7 months, he'd look a little beat up as well. We laughed. It's hard to know if it's the cancer, the treatment, or a combination of both (which I believe). I think it's a fine line between quality of life and treatment, but I'm willing to stay the course for awhile.

My friend/breeder took our dog Kohlbi to Rapid City, SD for a three-day dog show. Today he got his championship by getting winner's dog, best of winners, and then best of breed. He went on to show in groups and made the cut, which is great. WOOHOO! They will come home after the show tomorrow. No need to stay.

Is it cold in here, or is it just me?

I'm cold. I'm almost always cold now. I usually have 3-4 layers of shirts and sweatshirts on. I have a winter hat I wear around the house--sometimes to bed. I often put the hood of my sweatshirt up on top of that.

Michael and I used to be in the same climatic zone. We were cliimatically compatible. We were both usually warm and liked things cooler. A few days ago, Michael turned on the furnace for me. He's comfortable, I am cold. Hopefully our marriage will survive this major life change in temperature.

I wore sweats in the house this summer because of the air conditioning. On warm days I would sit in the swing on the front porch and read. I was in the shade but got the warmth of the sun. I took a jacket with me to the movies, restaurants, and other places, because I knew there was a good chance I'd get cold.

Don't get me wrong; I'm still not a fan of hot weather. At the national, while sitting ringside and watching dogs, I would have on 2-3 layers and still have to go outside to warm up. The weather in Topeka was perfect--mid-70's. I love spring and fall.

Today we bought an electric mattress pad with dual controls. Perhaps that will help me warm up better when I go to bed. Most of the time, I get chilled. At the suggestion of a cold-blooded friend, whose propensity for heat I have not understood until now, I'm wearing a down vest over my core with a t-shirt and two sweatshirts underneath. Perhaps I will be able to just wear the vest over a shirt and forego the extra layers.

I'm not exactly sure if the pancan or the chemo is causing this climatic change into the ice age. Perhaps my blood counts contribute. I just know that some days I get a little wistful about the menopausal hot flashes I used to sweat and grumble about and wish they'd come back.

I know; no woman in her right mind would say that. I blame everything on chemo brain now.

Back Home for Round 8, Day 13

We are home from the Samoyed National dog show in Topeka, KS. It was fun and it's a long, tiring week even if you don't have cancer. :-) Kohlbi 'made the cut' in his Open Dog class from ~30 to the final 10. He didn't get the points, but showed well.

We picked up a rescue dog this morning to bring to Denver to go to his new home. It really worked out well that we were in Kansas, only had one dog with us to start, and were able to help.

Tomorrow I go in for chemo to make up for last Thursday while I was gone. Technically this is my week off, so won't get another treatment until Thursday the following week. I felt pretty good through the week. The first couple of days I had eating issues (not eating much), but it got better.

It's fun to go to the National (or anywhere else), but it's always good to get home. Our house sitter told us that Boris (the male kitten) decided he likes baths and playing in the water. Those kids, they're always doing something new. :-)

Round 8 Day 1 and the National

Thursday was the start of R8D1 on the new schedule. Things went pretty well with 2 weeks on and 1 week off. I didn't feel too badly after chemo and therefore, probably have overdone it the last couple of days getting ready to leave.

I am all packed, the van is packed and we are ready to go early in the morning. Kohlbi was ready to go tonight, so he hopped in his crate in the van while Michael was loading some stuff.

I am going to bed, I'm exhausted. I will probably not blog until we get home in a week. Enjoy the week. I know we will.

Mourning

I've been feeling pretty emotional off and on over the past week. I'm not sure why. Yesterday I had a headache and was just not up to yard work or anything majorly physical. I've done quite a bit of that during the week.

I went to lie down, and Michael came in from working on the property. I just started crying because I wasn't up to working. Michael was disappointed and I was disappointed. I realized that I need to mourn for the physical person I no longer am as I have mourned for other things I have lost. It's a hard process. At the beginning of the journey, I had no idea how complicated and all-encompassing the changes and adjustments would be. Six months later I am still trying to figure it all out.

I am no longer a person who can take a dog for a 2-3 hour walk. I can't walk a half-marathon. I can't do hours on end of house projects (inside or outside). That's not the me I'm familiar with. I realized that I hate the physical person I am right now.

I had lunch with a couple of people this week whom I hadn't seen in awhile. When they saw me I could see shock and sadness in their eyes at how I look. It was hard.

I am slowly coming to terms with the face I see in the mirror. I hope that in time I will learn to accept the body that is less capable now.

Playing Pool

Last night I started playing on an in-house pool league. I literally haven't picked up a stick in 6 months. It showed. I made a few good shots, but missed some easy ones. I lost all of my four games (2 eightball, 2 nineball). The people are all very nice. They are people Michael has been playing league with for awhile.

I'm on the league because they needed a low-ranked player to balance the team. They were very eager for me to play. I laughed and told Michael I wasn't sure if I should be flattered or insulted. I said I would give it a try when I wasn't working anymore and with assurances that we wouldn't have to stay until really late to finish playing.

It was fun, tho we got home past my normal bedtime. I did discover that I can't really play with a baseball cap. If the bill is facing forward, I have to move my head weird to line up a shot. If I have the bill backwards, the hat falls off when I raise my head. I may actually have to wear the short wig to play. Or, find a hat with a smaller bill. Or, if I was really brave, play without a hat. I'm not ready for that yet, plus I have a really nice bruise on my head where I hit it on the corner of my desk.

I know that I will get better with practice. It takes time for the muscle memory to come back. I'm not sure whether chemo brain will affect my play or not. Anyway, it's a fun thing that Michael and I can do together. And, it is nice to be wanted.

Defining 'Feeling Crappy'

Michael and I were doing something the other day and he asked me how I was feeling. I'm ALWAYS tired and said so, but told him I was just feeling crappy. He asked me what that meant exactly. I thought it was a good question. I had never really thought about it; just used that word.

There is no exact science to what feeling crappy is. This week it's been a 5-day headache, not pounding, but annoying. It can be chills. It can be muscle aches and cramps. Of course, it can be chemo 'hangover'. Sometimes it is my heart pounding very hard where I can almost feel a pulse in my body where there isn't one. It can be just the uncomfortableness of feeling really full in my stomach/throat and needing to burp. It can sometimes be a bit of nausea. Sometimes there is just a feeling in the core of my body that is aching--very hard to describe. I may feel a bit like I have some MS issues (leg fatigue, balance issues, even worse-than-normal chemo brain--if there can be such a thing). Crappy can just be the opposite of feeling good. I can't remember when I actually felt good, with no level of crappy. OK, enough whining.

I know that the fatigue (with cancer/chemo as with MS) can sometimes be invisible. The crappy can be invisible as well. Sometimes I push through the 'crappy' to do what's important to me, to Michael, and to others. Sometimes I just can't push and have to do the right thing for me. Believe me, if I have to cancel plans to something I've looked forward to, I'm just as bummed as Michael or anyone else.

I'm sure everyone has their own definition of crappy. This is mine. Feel free to send me yours. :-)

R7D8 and Other Things

Yesterday was Round 7 Day 8. My counts were low, but high enough to get a full dosage. I also went in today and got a shot of Neulasta to help boost white cell counts. After that I went to the chiropractor (whom I haven't seen in WAY too long), and he said that a neck adjustment boosts the white cells by 200-400% for several hours. I will try to go in after each chemo.

Wednesday was my last official day at work. I still need to go through a few more things, but all my personal stuff is out. Many people stopped by during the day and I got many more emails. Some were quite emotional and came from unexpected people. I have been blown away by remembrances of conversations that really made a difference for people and for me. It was very bittersweet. Apparently we can have a bigger impact on people than we give ourselves credit for. It's been very humbling these last few days to learn this.

The other night Michael and I had a 'communication night'. Things were bothering him, we both got pissy and once we got done with that, we talked about it. He is feeling like he is already losing me. Even when we're together, I am often so tired, he feels alone. It is easy for me to turn inwards when I'm not feeling well. I've been spending time making plans to have lunch with friends on my good days. I need to realize that I can't completely spend myself for other people and not save anything for Michael and me. It was a good knock on the head.

It's ironic that I'm not working and feel like I have even less time for things. There are days where it is just easy to stand down and not put forth energy. There are also times when I push myself to do things that need to be done. I need to ask Michael what is important and he needs to tell me so that I can put energy where it is important for the two of us.

Good communication is difficult and it often initiates under tension, but we need to keep working on it.

The Journey

Last night I sent out an email to a lot of people at Ball Aerospace with whom I have worked, befriended, and/or had more than a brief contact over the past 30 years. I told them I was going on medical leave. Many people there know of my journey and some I thought would have heard, had not. I received MANY emails in return containing warm and encouraging words. One fellow coworker, Paul Rollings, sent me this original writing. I think it is very eloquent and expresses a lot of things really nicely. I am sharing it with his permission.

The Journey

The journey begins on the day of our birth
As our soul is delivered to this place we call earth.
Unknown at the beginning on the day that we start
Not a physical journey, but one of the heart.

Years do pass and great things we are shown
To guide us on this trek that’s uniquely our own.
On the path we meet others in happiness and in strife
For the moment unsure what they will mean in our life.

A chance circumstance is what we’d like to believe
When another passage is revealed, new direction conceived.
Searching for answers, this new way we will try
At times drawn by a force that we cannot deny.

Many books have been written with specific detail
and great prophets have spoke of their time on the trail.
But the journey of one does not another one make
So each must find for themselves the pathway to take.

There are times in our travel when there is no doubt
boldly moving forward, engaged in what life`s all about.
Other times on the voyage we’re unsure of the way
and in quiet solace we kneel down and pray.

This journey of the soul defies all time and space
for a road deep within is where it takes place.
So the journey continues even after we die
our final path chosen as we soar to the sky.

Only then in our travel when we’re finally called home
do we realize …we were never alone.
Paul Rollings copyright 6/99

MRI

I had a neurological MRI today. My neurologist had suggested I stop my daily shot of MS medicine when I started chemo. He thought that maybe the chemo would continue to work as well as the MS drug. It's been six months, so we will see what's happening. I'm not too worried.

While we were waiting for the scan, the oncologist walked by. He asked if his assistant had called me with my latest CA19-9 numbers (which she had this morning). The number is 1036. Not up much from the last one. I count that as good. Hopefully the next one will go down, with consistent dosing. It also correlates with the fact that I have had some growth activity.

So the scan and the numbers are pretty consistent with each other. Somehow that gives me a sense of comfort. That sounds kind of strange and I can't really explain it.

Wed is my last day working. It will be bitter sweet.

Results and R7D1

Not as good as I had hoped and certainly not as bad as my uninhibited imagination had me thinking.

The large tumor in my liver is back to the same size it was at the beginning. The others haven't changed. The tumor in my pancreas hasn't changed. There were a couple of miniscule dots in my lung on the last scan. Those have gotten a smidge bigger and there are a couple more. They are not anything to be concerned about at this time.

We changed my treatment schedule to 2 weeks on and 1 week off. By the third treatment in my previous rounds, my counts would be so low that they either wouldn't treat me or I got a drastically reduced treatment. We are going with the lowered dosage we started at the beginning of the last round and will increase it a bit nexxt round if things go OK. We don't have CA19-9 numbers yet, so don't know if that has changed significantly in the last month. After a couple of rounds we will see where the numbers are and get another scan if we need to. We are hoping that the inconsistency of my treatment during the last 3 months is what is causing some growth. If that doesn't prove true, we will try another drug.

Despite all that, the Dr. says overall I am doing well. I haven't lost a significant amount of weight in the last few weeks. People say I look good. I assume if I looked like crap they wouldn't say anything at all, so I take them at their word.

I did pretty good with my treatment yesterday. A headache last night and this morning. Thankfully some good friends had us over and bathed and dried Kohlbi, as that would have been too much. Today we were at the Local Samoyed Specialty in Greeley. It was a long day. Tomorrow and Sunday we will have shorter days at the show.

I am optimistic that things will continue to go well and I know that the prayers and positive thoughts that are being sent my way make a difference.

Scared

I'm scared about my scan results. I can keep the thoughts at bay during the day/evening while I am occupied with other things like dog shows, reading, errands, TV, etc. At the end of the day when I'm getting ready for bed, it hits me. I'm scared. I cry. I try not to imagine the worst, yet at the same time try to be prepared for it. It's a hard dichotomy to traverse.

Tonight Michael suggested I get up and blog about what I'm feeling. I had thought the same thing, but didn't want to do it without him knowing how I was feeling first. Bless his heart for convincing me I need to do this.

It's been 6 months. It hasn't been easy. I think I've weathered everything fairly well, all things considered. I don't feel great most of the time, and that is worrisome. I don't know if it's the chemo or the cancer or both. Barring pleurisy or really low counts, I manage to go on and live a pretty normal life. People are still treating me like me and most are comfortable asking about the cancer and chemo. I'm grateful for that.

I'm still not used to seeing that other woman in my mirror. The one who's lost 30 pounds, has dry, scaly skin, and the sparse hair that often sticks up like she'd had her finger in a light socket. I get to know her a little more each day, but in many ways she is still a stranger. I am trying to make friends with her and slowly we are getting to know each other better.

I've mentioned that my CA19-9 numbers had gone up a bit last month. I will get the test again on Thursday with my other bloodwork, so won't know my scores again until maybe Friday. I WILL know what the scan shows on Thursday. I am looking forward to it and dreading it at the same time.

I know my family and friends are as anxious as I am to know what is happening. I try to think positive thoughts and picture the imagery of everyone's thoughts and prayers raining down on me as a warm light. It is a little soothing.

I tell myself that I can't change the results by worrying about it, but the worrier part comes out to haunt me before I sleep. I go sleep with a little pharmaceutical help now. It's too hard to quiet the mind at night.

I think it's helped to write this in real time--as I am feeling it. It doesn't quiet my fears, but I don't feel as alone with them. Thanks for sharing them with me.

Accreditation

I went in for my 6-month CT scan today. My favorite radiation tech, K, came skipping out to the lobby and said they had just found out today that they did get their accreditation that I helped with. I told her I was excited to go home and blog about it again, summarizing the first blog. She just laughed.

Thankfully, today I did not have to drink extra barium or a bottle of water. The scan was easy and noneventful. We'll have results next Thursday.

My 30th Ball anniversary reception was really nice. I saw many people I hadn't seen for awhile. Michael drove in, our CEO made a showing and spoke, my sisters sent flowers, and lots of people came. It was fun.

Today I am hanging out and doing stuff around the house.

Pleurisy...

...is swelling (inflammation) of the thin layers of tissue (pleura) covering the lungs and the chest wall. The outer layer of the pleura lines the inside of the chest wall, and the inner layer covers the lungs. The tiny space between the two layers is called the pleural cavity. This cavity normally contains a small amount of lubricating fluid that allows the two layers to slide over each other when you breathe. When the pleura becomes inflamed, the layers rub together, causing chest pain. This is known as pleuritic pain.

So, after an afternoon of chest x-ray, bloodwork, and physical exam, they think I have pleurisy. The x-ray showed no gigantic growths in the lungs (thank goodness, more info after the CT scan on Thurs), I've had no fever, and my symptoms pretty much link up with the diagnosis.

Treatment? Time and pain-killing drugs. Percocet--the good stuff. Also, my blood is a little on the thin side, so we're reducing my dosage of coumadin. So, unless I start coughing up blood or getting out of breath, I just need to go easy, and take my pain drug when I can afford to be loopy. Though as things go, I feel more loopy all the time thanks to chemo brain.

I'm looking forward to the celebration on Wed of my 30 years at Ball. Hopefully the pleurisy will not get any worse. I can live with it as it is for now. Just get me through the next two weeks.

Rough Weekend

It's been a rough weekend after the last treatment. Even with the lowered dose and the ProCrit shot, Friday/Sat I was feeling REALLY crappy. My chest wall hurt when I breathed. Lying down was hard. Been sitting up as much as possible. It's a little better today. Hard to describe how it feels. Kind of like I just ran a 400-yard dash as fast as I could, and now my lungs/chest are burning. Not having any trouble breathing. Hoping maybe it's just muscular.

Michael's 24-hr intestinal flu has exceeded its time limit. If not better tomorrow, he may have to see a Dr. Nothing really got done around the house, since neither one of us has felt up to it. Since this was a non-dog-show weekend I was planning to use the time wisely. So much for trying to plan. I should know better by now.

My scan is scheduled for Thursday. I have my grape barium smoothie waiting for me in the fridge. Hopefully I'll keep feeling better as the days go on.

The weather has been awesome. I sit out on the front porch and read. Would like to feel up to some yard work. Hopefully soon.

Half of a Treatment

Today is R6D15. My counts were very low. They almost didn't treat me again. But, gave me a 50% dose reduction of my already-reduced dosage. Also got a shot to boost my red blood cells.

Next week I will have a scan, and the following week start round 7 and get the results. The Dr. may want to start doing 2 weeks on, 1 week off. Maybe I'll tolerate that better.

We had a dog show last weekend. No points for Kohlbi, but he showed well. Weekend after this is Cheyenne and then the following weekend is our local Samoyed specialty on Friday and an all-breed dog show on Sat/Sun. Whew!

Michael and I are planning to go to the Samoyed National in Topeka, KS at the end of September. Then we will turn around and go to Florida for the launch of the shuttle for Hubble Servicing Mission #4. Ball Aerospace has a huge part in this mission. I had always wanted to go to one so asked to be put on the list. I was lucky enough to get an invitation. Should be exciting. After that, we stay home for awhile.

I'm going to try not to spend a lot of energy over the next two weeks worrying about the scan. I can't change whatever it will be. It's always an anxious time, though. I'll keep busy and not dwell on it.

I hope I can do that.

Self-Absorbed

I feel like I'm being very self-absorbed lately. I know I'm not reaching out to others as much. It's not because I don't care, some days it's a matter of energy. If you send me email, I swear that I read it (probably that day) even if I don't respond. I feel like I'm not being a good friend.

I had one friend who was going through something and didn't say anything because they didn't want to add to my burden. No one is doing that. I'm still the same person (albeit a bit more tired) and I still care about what is going on in your lives--good or bad. I hope I'm not so self-absorbed that I can't celebrate the good times and listen or help during the bad times.

I know I'm not the poster child for being a great friend right now. I just want everyone to know that I do care and I'm doing my best to balance everything. Hang in there with me.

Chemo Brain

Yes, that's right. That's what you can get after awhile.

I didn't have a great week after R6D1. I had a couple of fevers, felt tired and weak, didn't have much appetite, and lost 5 lb. No one compliments you on your weight loss when you have cancer. Not that they should be. You want to hold onto your reserves as long as possible. I'm down ~30 lb. Thankfully I had some reserves.

Treatment today was OK. I asked the Dr. about cognitive issues. The other day I wrote out my full name and mispelled my middle name, Frances, with an i instead of an e. I was horrified. The Dr. laughed and I laughed as well. It was pretty funny, yet also concerning. Then he brought up the term 'chemo brain'. I've also noticed that I don't remember things very well and that I don't type as well anymore.

My hands/fingers shake a bit now. I'll be curious to have my MRI/neurology appt in Sept to see if my MS is progressing or if this is all due to PC/chemo.

We discussed my CA19-9 at the visit today. We are still going to wait to get a scan until after the next treatment. It could just be one tumor growing with nothing else moving. We will just have to wait and find out.

Michael and I had a 'talk and cry' night on Tuesday. We do have to confront our fears and it helps enhance our communication as we process things very differently from each other. I only got a couple of hours of sleep (it was too late to take an Ambien and get up for work). But, I slept good last night.

Hopefully my chemo brain is actually caused by chemo and nothing in my brain. There is always that chance. There is a chance that anything can happen. I can just muddle through it and try to keep a semi-intelligent wit about me.

Let me know how I'm doing.

Round 6, Day 2

Yesterday I started round 6 of chemo. He knocked my dose down just a little again, so I can hopefully get through all three treatments in this round. I actually feel pretty good. We will do a scan after this round to see how things are going.

Today, the Dr. office called to tell me my CA19-9 has gone from the 100s into the 900s. Obviously something is growing somewhere. We won't know exactly what is going on until the scan in a couple of weeks. That magic number is not the be-all, end-all, but it can be indicative of activity.

I'm a bit worried now and anxious to get the scan. We'll talk to the Dr. about it at our next appointment on Thursday. In the meantime, I will find things to keep me busy. Today I spent about 1.5 hours weeding along the driveway and some of the flower beds. We have a dog rescue picnic tomorrow and some dog shows coming up. Hopefully the time will go quickly.

Haircut

I've been debating about it since I got the wig and started wearing hats. I've never had really short hair in my entire adult life. You would think at this point, it wouldn't really matter, but somehow it did.

I didn't have the guts to get it shaved completely. One of my sisters said that after giving it quite a bit of thought, she decided she would not shave her head in solidarity should I choose to go that route. I thought that was really nice of her to even consider it.

Today I went and got it cut short. It actually looks like I have more hair with it shorter. Not that I'd go out in public with my almost-naked pate. I figured it would make wearing the wig and hats easier, and not look so scraggly.

Today I ordered another wig and a couple of hats online, so I have some options. I can no longer be in denial about what 'thinning' hair means. So, I'll try to be a bit stylish to compensate.

Back Home

We got home yesterday late afternoon. Our housesitter had given us a heads up that the air conditioner wasn't working properly since Friday night. Bummer.

We had a great visit with Mom. She wanted us to go through her stuff and pick what we wanted. We shipped several boxes of little things home. The bigger stuff is identified and we will get that when she decides to move from the farm.

One of Maurice's sons is clearing the junk off the land. He's been wanting to do it for years, but Maurice wouldn't let him. He has moved four junked cars, the top of the old silo and lots of other iron scrap. It looks better already.

We got the chance to see lots of Rellertives while we were there. We have such a good time with them. I haven't laughed so much in a long time. Yesterday, we had brunch with my maternal cousins in Minneapolis on our way to the airrport. It was great to be able to see both sides of the family.

I felt pretty good all week, just tired. The hair is coming out fast and furious. I've learned how to hug tall people and keep my hat on at the same time. Not as easy as you might think.

The weather was pretty mild--not too hot and not too humid. We did have a good storm early one morning that I slept through and that had Mom and Sister #3, who was staying at her house, in the basement for awhile. The rest of us were at a hotel in town.

We had a fun week full of laughter and some tears. I know my mother has some difficult days ahead off and on. But, she is a trouper. It is good to visit, but it's also good to get home (except for that darn air conditioning).

R5D15

I went in for chemo yesterday. My counts were too low and they wouldn't let me get it. It's a happy and sad thing at the same time. I'm going to Minnesota on Sunday with Michael and my sisters to see my Mom. So, I'm glad that I won't be feeling sick. On the other hand, is not getting this treatment going to be a negative thing in fighting my disease. There was talk of further lowering my dosage. What will that do to the abililty to fight the cancer? I have no answers right now. I am looking forward to getting out of town, seeing my mother and any other rellertives who show up, and leaving the pancan at home.

First Day of School

I wore my wig to work today. The hair is so thin on top now, there is no choice but to cover it up. I had to call a friend last night for a pep talk to do it. I was really nervous. She and another coworker were the first people to see me this morning and they liked it. Then I went to a department meeting and everyone else got to see it. I had more positive comments.

Under my lighting at home, the color looks blonde. Under the fluorescent bulbs at work, it looks strawberry blonde. I guess that's not so bad.

It gets a little itchy, but not sweaty. I'm learning not to keep my neck stiff when I move my head while wearing it. I brought my matching hat just in case the wig turned into a fiasco. I'm relieved and more confident with it now.

I need to decide whether to get the rest of my hair cut short or leave the back long to hang out from underneath my hats. It's a tough decision.

Anyway, it was kind of like the first day of school where you hope people like your new clothes, new hairdo, etc. I'm relieved.

Quilt

A Ball Aerospace employee, who I've known for years, but haven't seen in a long time, came to the house the other night. Turns out she lives just a few blocks away. She makes quilts for cancer patients. The cancer center has many quilts that have been made specifically for the comfort of patients as they get their treatments.

She made me a roughly 18x18-in. quilt showing stars representing all of the support from friends, family, and coworkers. It has one star depicting me reaching up for all the good wishes.

It was so unexpected to see her and I was so moved that she would do that for me. It reminds me of all of the good people there are in my life and all the nice things that come my way.

Take the time to think about the good things that happen every day.

Updates

My stepfather passed on early last night. My mother was with him and it was peaceful. A lot of friends and relatives had been by to visit during the past week. He enjoyed that even if he couldn't speak. He was pretty cognizant. There will be a celebration of his life this weekend. We will probably go out in a week or so (after R5D15) for my week off. My mom wants some time to herself and then she wants us to come out. She is doing well.

The other update is that I ordered a wig. We shall see how that goes.

Hair in My Sink

I can't ignore it any longer. It started slowly a couple of months ago. A few hairs in my comb. Now when I comb or brush my hair or shampooo it, or run my fingers through it, several hairs come out.

I started this process with thin, fine hair. I knew that it wouldn't fall out in clumps. But, I have grown no body hair since this began, so every hair that comes out now, is not being replaced by anything else.

A friend has a wig catalog she wants to give me. I will probably look on the American Cancer Society page and see what they have to offer. I really don't look that great in hats, and I'm not cute enough to pull off scarves. I think I'm going to have to look at wigs. I hear some of them aren't so hot/sweaty in the summer.

It's very noticeable to people, even tho they have been polite enough not to comment on the thinness. It's getting hard to do anything with it as well.

I truly wish that I was bold enough to have it all cut off and say 'screw it' to anyone who doesn't like it. I don't think that's me, unfortunately. I shall find a way to deal with this. So, if I look just a little bit different next time you see me, you can comment or not. I'll do what I feel I need to do.

Round 5, Day 1 and Other Stuff

Yesterday was R5D1. I spoke with the Dr. yesterday about my difficult recovery (9 days) after my last treatment. He did some math, and figured out what my average dosage has been. He lowered my dose in the hopes that I won't have such a roller coaster of white cell and platelet counts. I didn't feel too bad yesterday and today I feel pretty good. I hope this will make it easier, yet still be effective. We can raise the dosage over time and see where the 'sweet' number ends up.


The other thing going on, is that my stepfather is dying. He has battled slow-growing prostate cancer which has been spreading to his bones. He was managing that with radiation over the past year. A recent scan, tho, showed that it was spreading. He took a sudden turn and was in a lot of pain. He is now heavily medicated. His youngest daughter, who is studying to be a hospice nurse, is there helping to care for him and helping my mom get through this. His other children and grandchildren, nieces, and nephews will be visiting in the next couple of days. Michael and my sisters and I will go out probably when he's gone. My mom will need us then.

I am very sad. But, he is 87 years old, and is a person who has lived his life well. He's had a lot of adventure, got his college degree at age 70, he's travelled, met lots of people and had an impact on their lives. He will be missed by many.

Getting Things Done

I have the absolute best family. Sister #1 (in numeric order, not preference) called this week and REALLY wanted to help me go through the stuff in my office and get it organized. She thought that Brother #2 might also come and could help Michael with some outside stuff. Sister #3 also wanted to come and hoped we'd have something for her to do. Then I found out Sister #2 didn't want to miss out on anything.

They got here just as I was getting my shot in Boulder. Michael and Brother #2 finished picking up piles of pulled weeds and cut trees and loaded them into the truck so Michael and I can take them to the dump tomorrow. They then scooped poop out of the dog area as I hadn't really been up to it. I was so grateful. By the time I got home it was too hot to work outside.

When I got here the sistahs had almost everything out of the office. All I had to do was sit on the couch as they went through boxes and say: 'save', 'toss', or 'donate/sell'. We got rid of A LOT of stuff. Now what I have left is manageable and I can work on it a little at a time.

They will never know how much this means to me (I'm tearing up as I'm writing). We couldn't even convince them to stay for dinner. This is no reflection on Michael's cooking (tho, maybe mine). They just wanted to do something helpful and then go do their own things.

Family - I love you with all my heart.

Cumulative Results

Chemo is cumulative. By Saturday afternoon I was feeling like I had been run over by a semi. I did go to the store, but almost turned around twice. I was so tired and so weak, I could hardly stand it. I got a fever later in the day.

Sunday I was coming around a bit. We went to a movie and over to a sister's house in Thornton to pick up a yard implement. That was all I was good for. I noticed a dark spot on my foot, and tried to wipe it off, but it didn't work. Monday, I felt OK, and had a meeting I needed to attend, so went into work a little late. Came home a little early. Had more marks on my foot. Looked like bruising, but didn't really hurt. Tuesday went to work a little late and came home early again.

Wed had to wait for a repairman and called the Dr. office. I was feeling really cruddy, and worried about the large bruises as they can indicate problems. I was also feeling a bit light headed and mildly nauseated. Michael drove me to the Dr. and came home. We had an installation person coming.

I saw the PA and had a mini-meltdown. My counts were OK, not great, but she thought gettingi some fluids would help. I also got a shot to boost my white cell production, and a shot to help boost my platelets. I had another one yesterday and one today. Michael called a good friend of mine at work and asked if she could come over, because he felt badly that he wasn't there and I was in meltdown mode. That was really nice and meant a lot to me.

I think it's all helping. I slept 6 hours yesterday afternoon, and felt good enough to eat and go to the store. Today I feel pretty good. My sisters and brother are coming over this afternoon to help us with some chores around the house. I love my family and am so grateful to have them.

The weekend should be pretty laid back, and hopefully I'll have a few good days before round 5 begins next Thursday.

Round 4, Day 15

Thursday was the last chemo day in round 4. I had a really good week physically (after the Monday events). My sister was able to meet us after a couple of weeks of absence. And, another women in our 7 Steps of Healing workshop was there with her sons and daughter-in-law.


My white count was low and my platelets were at the cusp of no treatment, but they reduced the dosage instead. My INR (indicates thinness of the blood) was 7. A normal INR should be between 2 and 3. Fortunately, I had forgotten to take my Coumadin that morning. I'm instructed not to take any more until Monday, and then take only half a dose forever more. This happened after my DVT/PE after my car accident as well. I was instructed to keep an eye out for any blood in urine and stools and to please not jostle myself to any kind of bruising.

Thursday afternoon I had a fever and yesterday had that after-fever hangover feeling tired and weak. Today I'm a little better. Michael is playing in a pool tournament, so I may go to the store and just get out a bit.

No Good Deed Goes Unpunished

I did a good thing today. Last week the cancer center called me on the recommendation of my Dr. They needed a pancreatic cancer patient to do a very controlled CT scan to submit in pursuit of a prestigious accreditation. I said, sure what's a little barium and IV iodine contrast between friends?

The radiology tech met us at chemo last week to set up a time, and give me the barium and instructions. Then she thanked me so profusely, it was almost embarassing. I'd just done one a few weeks ago, I knew it wasn't that big of a deal.

So, this morning, I ate nothing, drank my first half of barium at 8am, then the second at 9am. My appointment was at 10am. As I'm walking in the door I see her waving wildly at me from inside. As I go in, I see she has a cup in her hand. I've never been met at the door by someone with a drink in their hand for me before. Oh, no, "not more barium", I said. She looked at me sympathetically. Since it had been an hour since my last barium fix, she wanted to make sure I was properly hyped up for the scan.

Then amidst more thank yous, I slowly guzzled my drink and asked her questions. I asked if they were having problems getting volunteers. She looked at me like I was nuts (not really), but asked how many people want to go through this if they don't have to? I was properly chastised. They apparently had already gotten the brain they needed, and I had the final pancreas.

After completing my barium cocktail, she then asked me to drink close to a pint of water (which was very cold). I finished that, put on the gown, and got on the table. Thankfully, she brought me a warm blanket. Then the IV went into the arm with no problem. I was ready to go.

After a couple of hold-your-breath scans without the contrast, they injected the iodine. It makes you warm all over and sometimes makes you think you've peed your pants. Not fun the first time it's done AND they forget to tell you that part.

A couple more hold-your-breath scans, and I was becoming nauseated. She asked me how I was doing and I told her. She ran to get a barf bucket and came to help me up. I heaved a few times and finally brought a little something up. She got me cold towels for my forehead. After lying there for a few minutes I felt better.

While I was getting dressed the tech told me the accreditation coordinator called and asked how it went. Apparently this was a REALLY big deal for them. She told me she confessed that she made me throw up. I said, "I must really like you, because I won't throw up for just anyone".

In honor of my heroic contribution to radiology at the RMCC, she let me take a magazine with me that I wanted to finish. She walked me to the door, gave me a hug, thanked me yet again, and told me she would call me when they got their certification. I went back to work.

Hours later I am still passing enough gas to fuel a Prius, and my stomach is still a bit iffy. Remember what they say in the military (so I've been told), "Never volunteer for anything".

Gardening and Rockies Game

One of my dear sisters came over early on Saturday morning (we're not early people) to help me weed the garden. Michael did the mowing and spraying of the rest of the property. We got a lot done in ~4 hours. I cut back the foliage along the front sidewalk so that people can actually walk to the front door from the driveway without getting their clothes snagged. My sister finished clearing the rose garden. I re-weeded the corner along the sidewalk to the front porch. We started loading the cleanup into the truck. It all looks so nice now. The flowers are gorgeous.

Unfortunately I got a fever later that afternoon. Slept for about 4 hours. I was really hoping that I wouldn't have too many after effects today as my sisters and I had planned to go to the Rockies game as a joint celebration of our birthdays.

I felt pretty good and we met at my sister's house in Thornton. I got to see all the work she got done on her patio which I missed because I was either sick or grooming the dog for a show. My sister who helped me weed, managed to get tickets on the club level just under the roof with the sun at our backs. I was so grateful for that. The sky clouded and we even had some breeze. A great day for a game. Unfortunately, they scored one run, albeit a really nice homer, to lose 1 to 3. Michael did more spraying and mowing until it got too hot.

Michael and I just got back from a little dinner and took a nice stroll down the street. It was a perfect evening to do more yard work, but...

I asked for a nice birthday weekend, and I got one. I've been eating, feeling tired, but overall OK (except for that rogue fever). So, I'm assuming I'll be going to work tomorrow. We shall see.

Birthdays

Yesterday was my birthday. I'm 52 now. The day started like any other birthday would. We made the 40-minute drive into Boulder and then back so that I could apend 20 minutes getting more blood drawn from my arm and my port.

After that I took a nap. Then Michael took me to see the new movie 'Get Smart'. I thought it was good. Obviously it's not quite the same without Don Adams, but it was OK. Then we went home for a little while so Michael could work. He asked me if I wanted to go out to dinner. Later I decided that my mind wanted to go to Old Chicago, but I wasn't sure how my body felt about it. So, we went, and I ate pretty good surprisingly. Then we watched a movie.

A pretty average day. But very nice. No fever, good appetite. Most women would say they don't want anymore birthdays. Not me. I'm hoping for all I can get.

A Tough Week

It's been a tough week. Very emotional, very difficult. Michael and I are working hard to figure out how to deal with this both separately and together. We started the '7 Steps to Healing' workshop last night. I am looking forward to learning from this.

I started trying to figure out what I need to do to go from short-term disability to long-term disability and what income that will provide. It's difficult to find someone who can provide all the information. I will not get a 90-day period of time where I won't miss work to continue another round of short-term, so at some point my Ball Aerospace days will be over. I'd at least like to get past my 30th anniversary date in late August.

Today was R4D8. Talked with the Dr. for awhile. Chemo went fine. Love the port. Just as we got home, the Dr. office called and said that the culture from my port that they had taken Monday, after I had gone in because of the fevers, had grown some bacteria. So, rather than have to go back today, I will go in tomorrow morning for another blood draw from the port. Then I will start taking an antibiotic. Then we shall see.

One of my sisters is coming over on Saturday to help me with weeding the flower garden. Bless her heart. Sunday, all of my sisters, along with an honorary friend/sister are going to the Rockies game to celebrate our birthdays. One last November, 2 in May, and mine tomorrow. We paid more money so that we could have decent seats. I don't think I could survive broiling in the sun all afternoon. Cross fingers and toes that I'm feeling well.

It's been a tough week, but I think Michael and I have learned a few things, worked out a few things, and we can move forward again. The Dr. did validate Michael's thoughts that I am allowed to have a meltdown once in awhile and that it is a healthy thing to do. I'll try not to do it too frequently. It takes a lot out of a girl.

Here's to moving on.

Crying

I spent a good part of today in tears. It started after I got up and called the RMCC saying I'd had a fever two nights in a row. They said to come in at 2pm. I cried in the shower. Then I was able to contain myself until we left for the Dr. We ran over a prairie dog and I just started crying. I cried through the blood draw, the nurse saw I was upset and asked if we wanted to talk to the social worker. I said yes, and cried through that. Then the PA came in and I just kept on crying through her trying to find a reason for the fevers. I also cried through the urine sample and another round of bloodwork in the arm and port to see if I had contracted any bacteria at my last chemo. My favorite nurse (who did our chemo class) came to draw the blood. I love her. Everyone was very nice to me as they couldn't help but see that I was having a bit of a bad day.

In talking to the social worker, we learned that it's not uncommon for things to HIT awhile after diagnosis. We had the wedding to deal with, new chemo regimens, Las Vegas, and dog shows. Now we don't really have any plans. It's just a day-to-day thing.

We are going to take their '7 Steps to dealing with your illness' class. It starts Wed night, and next Monday we will go to the introduction. We will be with these same people for weeks as the class goes on. It deals with all aspects of people with cancer, their caregivers, friends, family, etc. I'm hoping that it will be helpful. An old friend who recently died of lung cancer, said it was helpful to her.

I'm not crying now, though I did just throw up the grilled-cheese sandwich I had on the way home. I think my abdomen was just in overload. Michael is happy I've cried. He thinks I've shed way too few tears, considering what's gone down the past three months. He says people need to know that I have severe emotion about this whole thing as do most of my friends, family, and even just acquaintances. I don't need to be strong all the time. I will try to communicate better with him when I am REALLY feeling bad, as opposed to the 'normal' bad I feel. I know I don't have to do this alone.

Thank you Michael and everyone else I saw today for letting me cry and being understanding. OK, I'm crying again.

Why Me?

I had a 'Why Me' meltdown last night. Poor Michael. We had been sleeping apart so that I wouldn't make him sick when I had the cold. Good planning on my part, as I knew I wouldn't be able to take care of him. Sleeping apart can put a huge distance in your relationship. He came back to the master room last night. I missed having him there to talk to before I go to sleep. I didn't miss the snoring, but have good ear plugs. We started talking and I started my meltdown. Despite what he thinks, it had nothing to do with him, it was just about me.

I think that since we got good news on the scan, now we know what the future (however long that is) looks like. I think it's pretty scary. I've had fevers the past two nights. I've felt like crap. If I feel this bad after day one, how am I going to feel after day 15? When am I going to go back to work? When will I feel well enough to pull weeds, cut down treess, and the other things that need to get done?

I haven't self-indulged much since this all began. I think I'm entitled. Of course the obvious answer is 'Why not me?'

Round 4, Day 1

Thursday was R4D1. We used the new port. I still get a stick, but it's quick and not nearly as bad as getting an IV in. I felt pretty good on Friday. Saturday went to a noon wedding. By 2:30 was feeling pretty tired. Didn't eat much at the reception. By the time I got home I wondered if I'd be able to walk from the car to the house. Went to bed with really bad chills. Woke up at 8:30. Took my temp: 100.9. Was up for an hour, drank an Ensure and went back to bed.

I don't have a temperature today so far. I don't know why I would have one yesterday. It shows me I just won't ever know what to expect from this journey. It defines itself, I do not define it. I'm really glad I got to the wedding. It was just beautiful. Today I will take it easy, even though major yard work is staring me in the face.

Priorities.

Port

Port has many meanings. It is a class of very sweet wines, mostly dark-red; the left side of a ship; a data connection area on a computer; a geographical area that forms a harbor; the raised center portion on a bit for horses; and an opening, as in a cylinder or valve face, for the passage of steam or fluid.

I now have the latter. The procedure went well. The ironic thing is that it took 3 tries to get an IV in to place the port so I won't have to have IVs anymore. I now have a bulge right underneath my right clavicle. I hope that my clothes will cover it up. Though, as a friend said, it's not like people don't already know what's going on, so why try to hide it. :-)

I didn't go to work today as it's pretty sore. I'm planning to work tomorrow, and then will start round 4 of chemo on Thursday.

Since I haven't had chemo for two weeks, and am pretty much done with the cold, I have an appetite now. Friends gave us a really nice gift certificate to The Flagstaff House (a REALLY NICE restaurant), so we figured now would be the time. We can celebrate both our birthdays in high style as well as the good news from the scan.

Thursday it's back to the new normal.

Oh, Happy Day!

Remember the gospel group that sang that song? That's what's going through my head today.

The scan results show shrinkage in the primary pancreatic tumor and the major tumors on the liver. The smaller tumors on the liver can hardly be seen. My tumor marker has gone from almost 10,000 to 47 in 3 months. It's now in the normal range. No new areas of concern are showing and nothing has gotten any bigger.

I've been pretty stressed out the last couple of days. Even when he showed us the scans and went over the results, I wouldn't let myself believe it at first. I guess I had prepared myself for bad news. It's taken most of the day to sink in. I just called my Mom. She said "don't forget you have Grandma Halloran's genes to help." I told her "Then I'll be the first 90-yr old woman who has had pancreatic cancer for 40 years."

The Dr. was thrilled with the results. Of course, they never get all giddy with you, but I could tell he was pretty happy. So, we will continue on the same chemo course and hope it will continue to work this well. Monday I will get a port installed which will also mean that I will probably have to go on low dose blood thinners. I'll have to be careful about brusing and bleeding. In three more months I will have another scan to see where we are again.

I'm not thrilled about the continuing chemo part, but I know what it's going to be like, and I can live with that. I have no choice. I'm so happy to be able to plan further out in the future.

Oh, Happy Day!

Song Loop In My Head

For days I've had the lyrics below going through my head. Over and over.

"Kiss From A Rose", by Seal
...But did you know, that when it snows, my eyes become large
and the light that you shine can be seen.
Baby, I compare you to a kiss from a rose on the grey.
Ooh, The more I get of you, the stranger it feels, yeah.
And now that your rose is in bloom,
A light hits the gloom on the grave.
There is so much a man can tell you,
So much he can say.
You remain, my power, my pleasure, my pain...

I suppose there are all kinds of ways to interpret this. It sounds kind of dark, but that's not how I feel when it's going through my head. I've had songs stick with me for a day, but never one for days. It's kind of weird.

I guess the lucky thing is that I like that song.

'The Last Lecture'

Some, or maybe many, of you have heard of Randy Pausch and his book The Last Lecture. My father called me to tell me Dianne Sawyer was going to do an interview show on him and that I might want to record it and watch. That was the first I'd heard of him. Then, a couple of friends emailed to tell me about him as well. I've just finished reading his book. It's a very easy read.

He is a college professor who has terminal pancreatic cancer. He gave the 'last lecture' at his university which is a tradition where someone is invited to give the last lecture of the school year. You can watch it at http://youtube.com/watch?v=ji5_MqicxSo (about an hour). He also did the commencement address at Carnegie Mellon http://youtube.com/watch?v=RcYv5x6gZTA&feature=user (6.5 minutes).

He's very inspiring. He has a look out on the world (and has for most of his life) that should be a touchstone to us. He manages to eloquently speak many of the same things I've learned and believe. Though, I have to say, I did not write a 'dream' list when I was a child. But I did have the dream to go to Africa and I fulfilled that one twice.

I'm learning even more about what's important. It doesn't matter whether I go to the dog show this weekend--even tho two good friends came over and bathed and groomed him for us. At least they brought an extra marguerita for Michael. :-P The important thing is that I probably stay home, don't pick up anymore 'bugs', and don't infect anyone else. They can take him, have a good time, and I will be happy with how he does, regardless of the outcome.

Anyway, check out Randy if you have a moment. I have the book if anyone local wants to borrow it. Everything he has to say is relevant whether you have 3-6 months to live (he's past that at 9 now), or whether you will live to be 100. It's not a downer, it's very uplifting.

Enjoy!

No Chemo Today

Due to my cold, my lowered white count, and lowered platelets, I did not get chemo today. Getting chemo when you are already sick can push things to a bad place. I'm on an antibiotic to ensure that my cold doesn't develop into pneumonia.

Thankfully, I can still have my scan on Tuesday, see the Dr. on Thursday, and then have my next chemo treatment. Don't know if this counts as my week off or how the upcoming schedule will look.

So, assuming the cold/cough clears, I should have a nice weekend and first part of next week.

To Chemo or Not To Chemo?

That is the question. I'm still in the throes of a monster cold. I've done nothing but sit around for two days using up boxes of kleenex and watching TV. I'm now caught up on Lost, The Bachelor, The Bachelorette, and ER.

I don't know if they will give you chemo if you are sick with a cold. If not, then that will probably mean I have to put off my CT scan for another week. I hope not. We will find out tomorrow.

It sounds weird, but I really want to have chemo tomorrow so I can get my CT scan next week. The suspense is killing me.

But, as Mick J said, "You don't always get what you want,... but you just might find you get what you need."

Fevers and Coughing and Chills, Oh My!

I spent 7 hours in the emergency room Saturday night. Last Monday I started getting a scratchy, irritated throat. I thought maybe it was allergies since I had been out in the flower beds pulling weeds. Thursday the Dr. said my throat looked fine. Friday, I somewhat lost my voice off and on and started coughing.

Saturday I slept in until around 10. Got up and made the bed for our housesitter for Sunday night. Then I peeled an egg and made some toast with peanut butter. Looked at it and threw it out and drank an Ensure. I sat in the living room chair for awhile and just did nothing but cough and feel drained. I went back to bed at 12:30 and got up at 4:00 as I had to bathe and dry Kohbi for the show in Laramie.

Getting ready for that and going up and down the stairs was like moving in slow motion and it was harder to breathe under exertion. It was all I could do to get everything in place. Michael was helping my sisters lay patio stones at one of their houses. I got Kohlbi bathed and mostly dry, after drinking another Ensure after the bath.

Michael came home and I told him he would have to put everything away--I didn't have the strength. I took a shower and then we went to the local hospital emergency room. The center of my chest felt heavy. I really didn't think I had a cardiace problem, but I was concerned I might have pneumonia, as my white counts were down.

I did have a fever of over 101, which for chemo patients is not great. My blood pressure was low (even lower than normal). I gave them my symptions and my history, including the cancer, chemo, and blood clots. My D-Dimer (for blood clots) came out high, so they had to do a chest CAT scan to rule out clots. No clots. I had a chest x-ray. No pneumonia. I had an EKG. It was not normal, so they wanted to compare it to a previous one at Boulder Community Hospital. That took forever. That EKG was abnormal as well. I guess I'm just normally abnormal.

The doctor, nurses, and technicians were all very nice. After all that, I probably had a bronchial infection. I had a nebulizer treatment. I couldn't produce any sputum into my mouth that they could analyze for bacterial or viral origin. I went home with an inhaler and a a 5-day antibiotic.

We got 4 hours of sleep before having to get up on Sunday to get ready to go to Laramie. Thankfully we didn't show until 3:00 or would have had to blow off that day.

I felt a little better, but not much. I got Kohlbi combed out, my breeder trimmed his feet, we finished packing and took off about 10:30. Had to stop in Ft. Collins to get my prescription filled. The pharmacist couldn't read the doctor's name. I had to call the housesitter and have her look at the paperwork. What should have taken 15 minutes, took almost 45.

We got to Laramie about 1:00. Plenty of time. Unloaded and set up and then sat for awhile. I was exhausted. Finally got him ready for the ring and went over and sat and waited. Kohlbi won his class but that was it. We got an invitation to dinner, but by then I was feeling like I was walking through water. We went out for a quick dinner near the hotel. I was sure I had a fever again--I was really chilled and shivering. Finally ate some fish (after not eating much for two days) and checked into the hotel. Took some Advil and got under the covers.

Monday morning I felt a little better. Had breakfast with a dog friend. Got Kohlbi ready to show and he got a 3-pt major with best of winners. He now has 10 points, and only needs 5 single points since he now has 3 majors (only needs two). That helped me feel better. We packed up and left town and drove down Hwy 287 in rain and thick fog for about the first half our. Then things cleared up.

The high of the win was wearing off and I started to feel really fatigued. We went to a friend's birthday party for a little while, then came home and crashed. But I couldn't sleep. I was chilled, the dog had to go out, I had to pee a zillion times, Michael snored. I woke up the morning with a raucous chest and head cold. I didn't want to go into work and cough all over the place or catch something else while my system is down.

Today I am resting and doing nothing. I hope that chemo goes well on Thursday. We have another dog show in Longmont this weekend. I told my breeder I may need help with Kohlbi if I'm not feeling well. The third treatment in a round is tough.

I'm trying to balance illness and my life. I think this weekend was a little off balance. Hopefully we'll get it better from here.