If I have a choice, I won't have a PET/CT scan during a treatment week again.  I thought it might make a small difference in how I felt but the pre-diet was tough (I was still slightly nauseous that day so nothing I could actually eat sounded good) and I still felt weak on Friday (probably because I hadn't eaten much Wed and Thurs!). But I made it through and got the results today.

Although the progress has slowed (which is typical at this stage), the change from 3 months ago is statistically significant, which is a good thing. I even got a hug from Dr. Kaplan, who seemed sincerely happy with the results.  He said he wishes he could give me a break but as long as progress is being made, you stick with what works.

The plan is to continue with this schedule until the middle of April when I'll have another scan.  At that point I'll have completed 36 treatments (12 rounds).  That sounds like a nice place to stop, doesn't it?

When the time comes for a change, the next step will be a hormone based oral treatment that I'll take at home and monthly trips to the clinic for zometa (the bone strengthener) and avastin (the bio-medical treatment, not a chemo).  That's something to look forward to!

I'm almost done writing my next post, which talks more about how the last 29 chemo treatments have affected my body and life.  It will give you an even better understanding of why I was hoping for a lighter treatment schedule.  

For today,  I'm happy with the continued progress as well as the love and support from all of you!

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I was scheduled for a PET scan last Thursday but received a call that morning saying the machine was broken and I'd need to reschedule sometime this week.  I realize there was no way I could have known this ahead of time but I was still annoyed that I had spent the last 24 hours on a very restricted diet. And if I had more notice, I would have planned lunch with a friend or something else fun!

Dr. Kaplan had called earlier in the week with my cancer marker blood test results and I was actually disappointed with them.  They do show progress (less cancer) but the difference from 3 months ago is minimal.  This made me wonder if there was enough change to warrant a reduced treatment schedule.

I talked to Dr. Kaplan this morning and he said the blood test really only tells him if there is more cancer or less cancer, not how much change there has been. So I still need the scan, which I've scheduled for Friday.

 Another incorrect assumption I made was that if the scan showed a certain amount of improvement, my treatment schedule would be reduced.  It's actually the opposite.  If Friday's scan shows any improvement, I'll continue on this treatment schedule because the current drugs are still working.  If we've hit a plateau (which isn't likely, based on the blood test), I'd be put on a new medication with a less intense treatment schedule.   That's not intuitive, is it?  But that's what it is.

So, although I'm disappointed that I won't have less treatment any time soon,  I guess it's a good thing.

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The "sore throat and cold" I mentioned last month turned out to be a nasty virus. It started 10 days before Christmas and I didn't have much energy until New Year's Eve.  Just as I started to feel better, I got an ear and sinus infection. I'm thankful that James and the kids stayed healthy.  It would have been too much if we were all as sick as I was.  

I went to Urgent care the first week because I was sure I had strep throat.  I didn't have a good experience (not one staff member smiled) but at least I found out it was "only" a virus.   The doctor told me I was just like the 20 other patients he had seen that day and he didn't seem concerned that I had been receiving chemo for 8 months.  My favorite line was, "I hope you feel better soon but I doubt you will".

Nice, huh?

I saw Dr. Kaplan two days later and told him about my experience.  He gave me a more thorough exam and said next time I need to call him so he can remind me about signs of a secondary infection. He also said he would have been nicer to me.  I have no doubt.

I thought I was going to have another PET scan at the beginning of the month but I'll finish one more round of treatment first.  I really don't know what the results will be. It might look the same as it did 3 months ago, be marginally better, or a lot better.   Whatever it says, you know what I hope the outcome is -- less treatment!

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I, like so many others, was saddened to hear that Elizabeth Edwards had lost her battle with cancer.   I continue to be inspired by the strength and grace she showed during her illness.

She survived 6 years from her original diagnosis and 3 years after her cancer metastasized.   Not the numbers I'm hoping for, so my mantra last week was, "She is not me -- everyone's journey is unique."

When I was first diagnosed, I wasn't sure I would be one of the 20% who survive longer than 5 years with Stage 4 cancer.  Now, through learning more about my disease and having faith in my doctor,  I'm not expecting anything less.  That being said, the news brought back thoughts that had been quiet for a while. I tried to reason through them by asking, "How is her story different than mine?"  Such is the life of a cancer patient -- always trying to make the stories of others fit in with our own hopes and dreams.

I'm also remembering that I told Dr. Kaplan I was depressed around Olivia's birthday, wondering how many birthdays I would share with her.  He replied, "I think you'll have many more birthdays with her."  Granted, he said, "I think" but "many" is more than 3, right?  My plan is to throw a party to celebrate my 10th year as a survivor.    Sound good?

I almost wrote a "damage control" blog last week because I read two articles that said, "Elizabeth now has cancer in her liver and there's nothing the doctors can do".   That's not universally true (which I am an example of) and I have my doubts that it was exactly true for her.   These were news articles, not medical articles.   I know one person whose liver tumors have been in remission for 4 years and there's no sign of them returning.  Those are the stories we like to hear!

Last week was rough and I'm not sure if it's because I didn't get much sleep (thank you, holidays) or if my body is ready for a break and recovery is taking longer.  I've made it a priority to get more rest and drink a lot of water this week, which seems to be helping.  I do have a cold and sore throat but hopefully that won't last long.

I think I'll have another scan in January and afterwards I'd like to be on a reduced treatment schedule but I may have a few more rounds at this pace.  Either way,  I do believe a change is coming (and needed).   Dr. Kaplan often reminds me that the "trade off" is worth it.  Feel crummy for a few days and deal with the other side effects OR still  have the same amount of disease I had when I walked in to his office and not be able to do many things that I do now. I get it but some days I gotta complain.

On to more fun things -  the kids are enjoying the holidays and this might be the year we remember as being the most magical.   They all understand the true meaning of Christmas and want to make sure we do something for baby Jesus, but the spirit of Santa is also alive and well. We went to a Christmas party and the Santa was so believable that Olivia wanted to look for his sleigh and reindeer because she knew they had to be there.  And the boys' preschool Christmas program was precious.  Daniel and Ryan sung their hearts out while Olivia and James were shepherds in the live nativity.  I'm sorry all of you missed James walking in carrying a stuffed lamb.  There will be pictures.  One of the things we miss about living near family is being able to share these moments with them (and share in theirs), so we're especially grateful to Meghan and Asa for sharing that afternoon with us.

Off to drink some water and get some rest --- 

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There might be one or two things I'm not thankful for this Thanksgiving but

my gratitude list is much longer.

My list includes:

-James, who has always been an exceptional father and partner and is now

taking on some of my responsibilities.  He never complains and often says he

doesn't feel like he does enough.  I worry about him because I don't think

it's possible for him to take on more but I also know that he's driven to do

as much as he can to lighten my load, both physically and emotionally.

-James' job that allows him the flexibility to be here when he needs to and

the managers who understand why that's so important.

-My wonderful children who continue to surprise me with the depth of their

kindness and compassion and are daily reminders of why every step of this

fight is worth it.

-Our friends, family and even casual acquaintances who have stepped up in

ways beyond what we could have imagined and in ways that we can never repay.

As Christmas approaches, I wish I could give each of you a gift to let you

know how much you mean to us.  For now, know that you're in our prayers and

that we're touched by your kindness everyday.

-A church community who welcomed us from the first day we attended and

continues to be a shining example of what "giving" is. From people who

knew us just to say "hello" at church to friends we've made over the years,

they've all shown us what it means to care for someone else.

And the list goes on.  If I try to mention everything, I won't be

done until Christmas!

Blessings to all of you today as you share your own gratitude with those you

love.

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I received a call from Dr. Kaplan while we were on vacation. He had a question about my last scan and wanted me to have a more detailed PET scan as soon as possible.  I scheduled it for Monday morning, before my treatment. That made for a LONG day but I wanted to get it done and off my mind.

Part of me wished I hadn't answered the phone and didn't have to think about it while we were visiting the "Happiest Place on Earth" but I was distracted enough not to worry about it too much. I fluctuated between thinking there might be radiation or a more difficult treatment in my future and then thinking I was going to have the best results Dr. Kaplan had ever seen!

That wasn't exactly what happened but the news was good.  All of the tumors are responding well to treatment and many are estimated to be 90% scar tissue! Dr. Kaplan isn't ready to change my treatment schedule but he said I might be able to early next year. All of the symptoms I'm having now are chemo-related, not cancer related, so I’m really looking forward to having a less intense treatment schedule. Patience, patience .........

For now, I have a little better attitude about treatment.  It's easier to handle chemo when I know it's working and I can imagine it destroying the last bits of disease.  Being me, though, I had to look up what it means when there's scar tissue forming and how long those tumors will be controlled. I didn't get any solid answers, although having a good response in the first few months can be a good indication that the tumors will "stay put" for a while. That's what we're hoping for!

These results also reminded James and I of how thankful we are to be seeing Dr. Kaplan. If I had stayed with my original doctor, I would have had 10 treatment sessions instead of 18 and with only one drug, instead of two, I don't believe I would have come this far.

James, Dr. Kaplan and I were all pretty happy in his office that day.  If I had to come back from vacation, that was a nice way to return.

And about our vacation -- we went to Disneyland!  James and I debated about it for a long time and then decided it was the right time to go.  It's a little quieter this time of year, the kids are at a good age to appreciate the park and Olivia only missed three days of school.  Even with the 90 and 100 degree temperatures, we all had a great time.  We also saw some friends and spent an afternoon with my cousin. It was a nice trip with good family time.

I was worried about how I would feel while we were there, but I felt better than I have in a long time.  I might have been a little more tired than most parents who bring three children to Disneyland,  but not much.  I was close to coming home early one day but pushed through and was glad I did. Given that I was having trouble walking a few months ago, it's pretty amazing that we had a successful trip to Disneyland with three kids in hot temperatures.

Once again, thanks to all of you for your support and prayers.  I know they're working!

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The weeks are going quickly.  So quickly that I barely remember my week off!   I know it was a combination of "normal" and trying to catch up with everything in my life.  I did see the ophthalmologist and my eyes are healthy, except for the temporary chemo side effects.  I asked the doctor if I can get new glasses or if my prescription will continue to change. He gave a long explanation about how the chemo affects my eyes but also said new glasses would be a good idea. YEA! I'm ready to see better and I'm also ready for a new look (like my hair isn't enough --). 

This week Dr. Kaplan asked how I was doing "other than medically", so I talked to him about some of my concerns, including that my prognosis must be affected by the sheer number of tumors I have.  He said that's not necessarily true, especially with breast cancer.  He gave the example of lung cancer, which often follows a predictable pattern.  There are many treatments and drugs available specifically for my kind of tumors, so the course is much less predictable (in a good way). No guarantees, but at this point there's no reason to think otherwise. I left his office feeling "lighter" than I have for a while.  Another reminder that I need to ask those questions.

My blood count is back where it should be.  For now, "3" is the magic number for shots. Week 2 of this treatment cycle was a rough one.  I still didn't feel well on Friday, which sometimes happens after week 3, but not usually after week 2.  I'm a little anxious about what the next few days will bring but at least I won't have treatment next week. When I feel better, I'll feel better for a while.  That thought actually made me smile. 

I'm going to have a CT on Friday and I'll get the results when I return to treatment on November 8.  This set should give a more accurate picture of how the chemo is working. I'm telling myself that the results won't be dramatically different than two months ago and Dr. Kaplan is just looking to see if there's been any change.  And there's no reason to think there hasn't been ---

I did find someone to talk to about my crazy life and emotions and I was also assigned a cancer buddy, although I haven't called her yet. It's hard to find a quiet time but I'm hoping to soon.

I participated in a breast cancer research study two weeks ago.  The study is looking at why some women under age 45 get breast cancer and others don't. They asked many detailed questions, some of which I couldn't accurately answer. Do you know how much you weighed when you were 12?  Or how many times you've had a fever over 102?  How about what medications you've been on since you were 18, including the dosage? I'm not sure if I came close on some of the questions but the researcher assured me it was okay. 

Olivia's birthday was Friday and she had a special weekend.  Thanks to everyone who made that possible by helping with preparations and/or sharing in the celebration.  Everyone is looking forward to Halloween, of course.  Watch for a darling Dora, Buzz Lightyear and "Super Why the Super Reader".    If you don't see them, I'll be sure to post pictures.   Enjoy your spooky weekend!

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