Oh, the Places You'll Go

Well, this cancer journey takes me to a lot of places, so I thought the Dr. Suess title would work here.

Almost two weeks ago, I called into the doctor to find out that there is growth on the liver again. It was kind of like going from 0 to 60 in a second as my last scan showed continued regression. To find out there was growth was obviously a bit of a shock. But, that is how cancer is. It is sneaky bad word, bad word. It is no respecter of time, person or places.

Because I called in ahead of time to find my results, I was able to process the news and take some action on my own before meeting with my doctor the next Tuesday. I made an appointment that day to meet with my doctor at U of M, Dr. Hayes, to see what his opinion might be and if there were any clinical trials available to me.

I had also been contacting some people about a trial in Rhode Island that is very promising, but it does not start until August. Although it may be an option at some point in my future, I cannot wait at this point to start treating the cancer. It would be wonderful if it truly were a cure for this awful disease.

I had my information ready and I went in to see my doctor here in GR last Tuesday. I was nervous, because I didn't know how she would be about my appt. at U of M or how she would respond to the other trials I was interested in. She is a very quiet doctor, and it is hard to read her sometimes. Prayers were answered, because she and I had the best dialogue that we have ever had since I have been seeing her. I told her about my upcoming appt., and she responded by saying she was going to suggest that I see Dr. H again to see what he might have available for the future. She also mentioned another cancer center in Detroit that may have some trials for me at some point, and gave me a doctor's name there. She said she was very open to whatever Dr. H may suggest, and we discussed further some of the new treatments that may be coming out in the future. It was so amazing as we were really on the same wavelength the entire visit, even down to my asking about my blood work about the same time she was going to look at it. It was an empowering feeling to know that not only was she just my doctor, but she truly is on my team and wants the best for me. She suggested going back on a previous combo that I have had that worked well for me if there was not anything for me at U of M. I had a return appt. with her today to discuss my findings from U of M and possibly start on the chemo.

Right after my appt., the girls and I headed to Kentucky for a fun visit with my family. We had a wonderful time, but needless to say the unknowns were swirling around my head quite a bit. I enjoyed the shopping, eating out, fish fry, my new favorite game (bag in the hole)[side note: I call it corn in the hole to be funny, but I digress], the heat--yes, the heat, and just hanging with the family.

We returned home on Monday, then yesterday afternoon I had my visit at U of M. It was originally at 2:00, but they called to see if I could do 4:00 so that they could spend more time with me. So we first met with the assistant to go over all of my previous history. It is quite impressive to see how much information they can fit on one sheet of paper. We waited quite awhile, while the assistant went to talk to "the boss" and go over my ct scans that I had brought. They finally come back in and Dr. Hayes checks me over real quick and then asks if we mind waiting while he saw his last patient, so that he could concentrate on talking with us. We moved to a bigger room (and much cooler room--I might add). I was sweating like crazy in that first exam room. Once again we all sit down, and he gives his normal spill about how every doctor "bakes the cake" differently, but they all still work. There are many different ways to do things, and Dr. Y had taken care of me well. But then, he goes on to say that the other reason I come to see them is to see if they have clinical trials available and at this point they did have one that I would be eligible for.

He goes on to describe the trial, which is based on their discovery there at U of M of what they call the breast cancer stem cells. These are not like the normal stem cells you hear about on the news. They are more like part of the tumor that feeds it. Or to use Josh's analogy which Dr. Hayes really liked, that the stem cells are like the seeds of the tumor. Without them, the tumor cannot grow. They have tested different drugs that attack these specific cells, and what they have come up with is that this certain drug, called MK-0752 combined with a chemotherapy drug, Taxotere, can be found to attack these cells. The drug has been safely used in alzheimers patients, but sadly with no benefit to them. They are testing the safety of using this drug in combination with the Taxotere. Thankfully, for me, I have always had good response to the taxane class of drugs, and the doctor feels that I would do well even if I were to use the taxotere alone. But, we are going to do this trial and try to do further damage to those tumors with this combo. The main drawback is that I will have to travel a few times a month to Ann Arbor to receive the pills and to get the chemotherapy. We feel that it is worth it as this is an open door that will add a possible ammo to my arsenal of drugs. We may need some help with getting me to and from Ann Arbor, so if anyone likes to drive cute green Saturns, feel free to let me know!

I really, really like Dr. H. His bedside manner is divine, and he is such a positive guy. He even took time to show us a rare picture of a cancer cell that very few people have seen to show us some progress being made in further research. It was amazing. He describes everything in great detail that you can understand, but he doesn't dumb it down too much either. I am happy about the prospect of more visits with him. He feels that there are a lot more options for me down the road, and that was a good thing to hear.

I still had not made a final decision until I saw my doctor today. She was very glad that he had something for me. She offered to help in any way she could either with blood work or prescribing something in case of fevers, etc. It was another good visit with her. I went back to tell my nurse, and I kind of felt like I had a winning lottery ticket or something. One person told me, "Congratulations." and my nurse said, "This is what we want for you!" She also told me she would be praying! I love her, and I will miss her a lot! So tomorrow, I will call and get my schedule to start possibly next week.

It was a good feeling to not get chemo today. I took advantage of my baby sitter and did some shopping while I was childless. Then I came home and dug in my garden awhile to plant some things dad had given me and rearrange a few things. It felt good to do some things like playing in the dirt that I know I couldn't have if I were on chemo. I will get to have lots of energy next week at the lake, and I know it will be a good time with lots of healing laughter and being surrounded with the beauty of God's creation.

So, as my dear friend Lisa says, even as she is now nearing the end of her life: "I am thankful for today."





Here are a couple of links to the trial if anyone is interested in that techinical kind of stuff:

Clinical trials site

U of M site

Scans tomorrow.

Yuck. 

The stuff you have to drink.

Yuck.

Gag, gag.  

Getting to look at the sky  and a cherry blossom tree while being pushed into a tube.  

Priceless.

The Conference

As I mentioned in my last post, I had the privilege of going to Philadelphia for a conference for women with advanced breast cancer. It was put on by LBBC (Living Beyond Breast Cancer), an organization that advocates for and educates women with breast cancer.

It was a last minute thing. I had seen the post on YSC about the conference, but I didn't pay attention to it as I knew it would probably be out of the budget for the plane fare, hotel and registration fee. I was reading through the post more carefully as more and more of the girls on the YSC board were making plans to go. I had missed the fact that you could apply for a scholarship to help defray the costs. When I saw that, I knew that I should make every effort to go, as this would be a wonderful opportunity to meet some of my online friends and re-connect with some of the ones I had already met. The unique thing about this conference is that it was specifically for women with Stage IV breast cancer or "mets" as we like to call it (short for metastatic). I applied for a scholarship on a Saturday night and I heard back on Monday that I was approved! It was a go! There ended up being about 20-25 of us going to this one conference.

I was able to get on a flight with a friend from Detroit area (Lila) going out there. I really connected with her right at the start. She is such a giving and thoughtful friend. She had a sandwich for us to share and a bag of chips for both of us as she was afraid I wouldn't have time to eat between flights. She and I laughed a lot together and had quite an adventure with some of the other girls getting to the hotel from the airport. It was so crazy all we could do was laugh! 

It is such an amazing thing to meet other women going through mets as they are the only other ones that truly, truly get what you are going through. We all come from so many walks of life: some single, some married, some married with children, different religions, backgrounds, and personalities. Yet, somehow all that does not keep us from having a strong and fierce bond with one another. The friendships and feelings I have with and for these women are so intense, that it is almost impossible to describe.

The conference itself was good as well. I really was only able to take in the workshops and speakers on Saturday as I had to leave for the airport a little earlier on Sunday. I learned a few things about how to help with side effects and such. One of the big things they talked about was acupuncture. It was interesting also to hear the reports on the latest research. I wish we could have heard a little more about my specific type of breast cancer, but it all tied together with what the speaker was talking about. It was neat to hear about new things that they are studying and treatments that are coming out.

Elizabeth Edwards was the keynote speaker for the day. I really wasn't sure what to expect from her. I have admired her for living such a public life while going through breast cancer. She truly was a pleasure to hear. She was very down to earth and very realistic. Really, it was like she was just one of the crowd. She looked as tired as all the rest of us did! She talked about things we all related to such as not wanting to get out of bed in the mornings. Sometimes you do, and sometimes you don't. She didn't really talk much about her specific disease as she does not want others to try to emulate her treatment. Everyone is so specific in how they personally respond to treatments. What works for one person will not necessarily work for the next person. She spoke about her reasoning for going public. I appreciate all of the work that she does for breast cancer research and lobbying. She talked frankly about how they are open about cancer in their family. How it is something that they all live with daily and do not try to hide from it or pretend it doesn't exist. She talked about the struggles of keeping up with her children, and how she, as we all do, still get up off the couch to see what they want even when we don't feel like we can move another muscle. She told a cute story about "the Lord's dime" from when she and her sister were little. I will try to retell it as well as possible. Basically, she and her sister were given two dimes every week right before they went to Sunday School. One was for them, and the other one was for the offering plate. Elizabeth and her sister were walking to Sunday School one day carrying their dimes. When they went to step up on the curb of the sidewalk, one of her sister's dimes fell out of her hand and rolled into a drain. Her sister then said, "Well, there goes the Lord's dime!" I think that was a cute way to think about what our priorities are in life and making sure the dime or priorities "still in our hand" are the important ones.

Anyways, I am so thankful for the opportunity to meet so many of my mets friends. They truly are all amazing women with much wisdom among them. The best times and conversations were truly in the evenings that I spent with them. They make me smile and laugh with their snarkiness and wit, and they make me cry with the pain that we all have endured and continue to endure. I have been blessed with their love and friendship.

LBBC's Conference for Women with Advanced Breast Cancer

This video was shown at the conference I attended this past weekend. I have more to share about the conference later. I have met a couple of the girls in the video. One of them was my roommate at the conference.

In honor of the Oscars. . .

--I'd like to thank everyone for their celebrating, eating chocolate, eating pickles, and rejoicing with us.*

--I'd like to thank everyone who has helped us along the way by visiting us at chemo, cleaning, cooking meals, babysitting, traveling long distances to help us, helping us monetarily, being our friends, and just praying.   

--If I started listing names I would go well over my 45 seconds!!!!   Each of you know who you are, and please know that you are appreciated more than you could ever, ever know!!!  

It is such a relief to finally have some breathing room.  The relief has definitely shown on my face!  When you start something new, it is always stressful wondering if it is working or not.  I am recovering well from chemo, so that has been nice.  My taste buds are back in full force.  I am getting stronger in that I can do more and not get so exhausted.  I have a nice "army" look growing on my noggin.  Hair is a nice thing to have!  I am just so grateful to have been given these months off of chemo.  I am praying for this to work for a good long while.    It truly is amazing that I had regression on just the pill.   It humbles me to know that I am one of the fortunate ones going through this.    I have been given more time off chemo and more life.  Thanks be to God. 

My doctor aka the parole officer (my new analogy) was very surprised with my scan results.  I am sure she didn't expect that to happen at all.  She had talked about me even doing a couple more rounds of the chemo last month when I visited her which really depressed me.  Thankfully, she waited to make that decision until after scans.   I was extra nervous because of that though.  If that wasn't enough, when I was getting the scan, the tech asked me in the middle of it if I had a history of smoking--which I don't.  They had never asked me that before that I could remember.  Needless to say, my mind kept worrying about every little ache and pain.  I would obsess over whether or not I felt any heaviness in my chest or whether I was getting short of breath.  Lets just say anxiety can cause those side effects too!  You just get more worried about little pains when you have cancer.  I figure I am out of the jailhouse when I am off chemo, but the parole officer keeps a close watch on me.  At least I am not on house arrest like Martha Stewart or something!  The problem is that Cilgamore is such a crazy, wild beast of a criminal, that we never know if it has been behaving or not.   I, of course am the innocent victim here!  :-)  The scans and tumor markers are the only way to tell its behavior.  By the way, did I tell you that my tumor marker had come down again too???  It is 39, very close to the normal range which is below 35.  Lower, lower, lower, lower, lower, lower--stomp Cilgamore lower--is the key.  (Anyone remember that song from children's church?)  The lesion is down to 4mm, down from 7mm the last time.  WooHOO!!  Also there were a few tiny, unmeasurable ones that are now gone or that look like scar tissue only.  

The pill that I am on is called an aromatase inhibitor.  It blocks all the estrogen in your body.  I actually get a shot to put me in a post-menopausal state, if you will, in order to be able to take this drug.  Unfortunately I am getting all of the side effects that people get as they get older.  I have been having quite a bit of joint pain and muscle tension.  Fatigue is also a side effect.  So, although I am feeling a lot better than I did on chemo, it hasn't been as easy as I thought it would be.  I guess I thought it would be easier because I did not have these side effects as much when I was taking Tamoxifen (another anti-estrogen type drug).  I have been having a lot of my pain in my heels of my feet.  They mainly hurt when I first get up after resting for a while or first thing in the morning--especially on the stairs.  Once I get going, they start feeling better.  I am going to see a podiatrist to see if it is plantar fasciitis.  At the very least perhaps they can help me get some inserts for my shoes or something to help.  If I walk a lot, they will hurt more.   Then there are days they just hurt and days where they don't.  The cold makes my joints worse too.   Tylenol and Ibuprofen help with the muscle aches, but not the heel thing so much.  Okay, blah, blah, blah enough complaining.  Just keeping everyone informed as to my life, right?   

I am also seeing a physical therapist 3 times a week to get help for my lymph-edema in my left arm.  It is something you can get anytime after having major surgery like a mastectomy where they remove almost all of your lymph nodes--even 6 years later.  It started this past summer due to the chemo, and I really didn't have the strength, energy, or time to deal with it while on chemo.  So, now I am trying to "catch up" on all the little things that go by the wayside--like dental appts., etc.  My hand is quite puffy, and Emma thinks I said it was a puppy.  Needless to say, ever since then I have had a permanent, make-believe toy attached to my body.  She talks to it, gives it commands, pets it and holds it.  It is quite amusing how she "loves" on the puppy.    Gotta love a child's imagination.   Hopefully her puppy will lose some weight with the therapy.  It has already helped after one week of getting it massaged and wrapping it with bandages every night.  I am getting juiced like the blueberry girl on Willy Wonka as one friend put it!  (Love ya--you know who you are! Ha, ha!!!  )

See, this is the problem when I don't post for awhile.  I end up having to play "catch-up" and type like a mad woman.  I have got to stop this habit!!  You all are going to give up and not read all my madness.  I guess my excuse is that it was a dark couple of months of recovering mixed with depression and anxiety.  Thankfully we are climbing out of that hole now.  If you read all this, you are a true friend for sure.  That is all I have to say now! 

*Yes, I am addicted to pickles,  I went out and bought the big jar of Vlasic hamburger chips from Sam's Club after my good results!  I also like to indulge occasionally on the big jar of deli pickle spears in the refrigerated section of the grocery store.  They are my "six pack" so to speak!  Ha, ha!!  They truly do make my mouth happy!  Josh even got me a jar for one of my Valentine's presents.    The other present was tickets to see Celtic Women, lest you think I was cheated out of a nice gift.

Still Here, Alive and Kicking

Sorry for the long absence.  I will try not to make myself so scarce next time!  This post is courtesy of my dear husband, Josh.  It is an e-mail to family.  It was so good, I asked to copy it.  To preface it, my oncologist ordered the scan a month earlier than I thought she would, and she was already talking more chemo before the scans.  Thus the feelings described in the e-mail!  

You've heard of waiting on pins and needles, well this past week for us has been more along the lines of swords and spears.  You see, one week ago, Amy had her first scans since she went off chemo in December '08.  Up to that point, she had been on chemo of one sort or another for 16 months.  Yeah, its about as long, if not longer, than it sounds!  Since going off chemo in December, she has been on a hormonal therapy (a pill she takes every day) that has its own line of side effects (but thankfully, not as severe as the chemo).  

But after two months of that, we did not know if it was working.  The hope was that the hormonal therapy would keep things stable at least and not allow the cancer to continue to grow or progress.  For some reason, they make us wait one week for the results so that the doc. can tell us herself and today was that day.  The week of waiting is always hard, but this one was especially difficult for all of us, especially Amy.  When we got to the doctor's office, they were busy and we waited about 45 minutes to see the doc.  Our stomachs were about to burst when finally the doctor came in our little room and gave us the scoop.

The news was  amazing actually.  We went in preparing ourselves for the worst and what we heard was that there is no further growth of the cancer and that the lesion (tumor) in her liver had actually regressed in size!  Yes, shrank, got smaller, whatever you want to say.  Well, you could've scraped our little puddle selves off the floor at that moment.  I think we were in disbelief for the first few moments as we just absorbed what was being told us.  Neither one of us wanted to think about Amy going back on chemo, but we couldn't help but go there in our minds and had prepared ourselves for what we thought was going to happen.

So, chalk it up to prayer, powerful medicine or our monthly support of shaklee, whatever you will, but we are extremely thankful today and breathing again.  Amy doesn't have to go back for another checkup for a couple of months.  So smile, kick up your heels even, whatever it is you do to celebrate, do it in honor of Amy.  

Good Report

We got a good report from my scans yesterday.  The tumors had shrunk more, and my doctor is just having me do one more cycle of chemo here!  I then will go on a hormonal for as long as it keeps things under control.  So one more chemo treatment to go!  I am nervously optimistic.  The chemo, as hard as it is, is like a safe-guard in some ways.  I am hopeful that the hormonal can work just as well on the cancer as chemo.  

So here we go onto a new thing. . .   It will take me a while to recover from chemo, but I am looking forward to having some new-found strength and energy.  

Upcoming Scanorama

Have you seen these posters?   Oh man, I haven't laughed out loud at my computer in ages until I saw these on another blog.  Talk about hilarious humor.  I guess I am like the Pioneer Woman, because I totally get this humor.  If you want to see more, go to Despair.com--you gotta love that name.  I really liked Challenges.  Funny stuff.  I am like Ree, if I had an office job, these posters would be all over it, tacky like, hanging on every inch of the space.  

In scan news:  Scans are scheduled for Tuesday the 25th.  We won't know results until the following Wednesday, but I will be sure to post them when we get them.  

Treatment has been okay.  I have some increasing queasiness with each recent treatment.  The meds I have for the nausea work, but they just make me more sleepy than I already am.  The ones that cost a bundle a pill and don't make you sleepy aren't really working, but the cheap drugs do.  Go figure.  This past treatment was rough as far as fatigue and weakness go.  I got the Vivix product and started it the day before, so it had not kicked in yet.  For 2 - 3 days after, I felt like a zombie.  I couldn't hardly do anything but sleep.  I got up on Friday to do a few things around the house for like a half an hour, but it totally wiped me out.  I just felt YUCK.  The good news is (as if there has to be some) by Sunday I felt fine.  I totally was moving and grooving all day without even a nap.  I am not sure if it was the very small coffee I had that morning or if the Vivix was kicking in.  I felt great Monday too.  The bad new is I couldn't fall asleep Sunday or Monday night.  You would think that after all the activity, I would be wiped.  But not so.  I even got up and took a warm bath to relax, and that didn't work.  I took drugs, counted M&M's, SweetTarts, Sprees (I have no clue why they are all candy related, but they are easy to count), and sheep.  Maybe I am getting too much subconscious sugar!  Ha, ha!  So now today, I was tired, and I slept while Emma took a nap.  I should have just stuck it out and not slept, because now I am awake.  I may try to head to bed soon and at least attempt it, but I have my steroids in me tonight.  Gotta love the joys of cancer treatment:  Tired, Can't sleep, Queasy, Tired, Can't sleep.  Geez, can we get a break???  I know, I'm funny right.  As my Aunt Kim said, and I quote her loosely, we're ready to be rid of this chemo lifestyle.  I think it is time to find a new lifestyle.  What should I do, go start a llama farm?  It would be better, and my family can all come scoop llama poop.  Okay, I crack myself up.  

In fun news, I re-did Emma Mei's room with all my new-found energy.  It is so bright and colorful and fun.  I should post pics on our other blog.  I found the comforter cover long before she came home, and over the past couple of years, I have been "collecting" things to go with it.  So in two days, a little spray painting, and craftiness, her room was transformed from a sweet, adorable nursery to a bright fun room that really matches her personality.  I was a little sad to take down her old name I had made though.  There was something symbolic about it.  I probably will never get rid of it, and find some secret place to hang it where I can peek at it once in a while.  I guess I should have posted this over at the family blog, but it is related to new-found energy while having treatment.  By the way, her new name on the wall looks sweet as I took pictures from her comforter and printed it into paper for decoupaging.  Josh says it is his favorite name that I have done so far, so kudos to me.   Although Katelyn's room is done and gorgeous in my humble opinion, she had plenty of jealousy over my doing Emma's room.  We had a little talk about life and fairness, and blah, blah, blah.  So, if you ever come over and see Katelyn's room, feel free to gush about how adorable it is.  

So my next project, I am praying, praying, praying (no pressure here, honey) for a certain (big) room in my house to be painted a certain beautiful shade of Benjamin Moore Pottery Barn color.  I will sell all my furniture to have it painted, just to sit in it on the floor and bask.  It is all I want for Christmas, and I must be desperate if I am actually posting it on here.  Well, it isn't all I want for Christmas, I want a couple of other things (and of course they aren't cheap), but the painting would sure take the cake.  Anyone like good at painting out there?????? Hello, hello is this thing on????   I am good at it, but I really don't have the strength it takes to tackle it.   I would be all over it if I did.  

Well, Jack-jack is here this week with lots of yummy food for us to gobble up.  It is nice to have her here to take care of us.  So, I am signing off with a yummy recipe for Mystic Chai Tea and a story about it.  Some friends from church had the pastors all over for dinner, and she served us this yummy tea mix she had made.  So today, I found the recipe online and I wanted to run out and get the ingredients.  

Here is the recipe typed out as I found it: 

RE: Mystic Chai Tea Mix Recipe

Post By Susan (Guest Post) (01/07/2005)

Instant Chai Tea Mix

1 cup nonfat dry milk powder

1 cup powdered non-dairy creamer

1 cup French vanilla flavored

powdered non-dairy creamer

2 1/2 cups white sugar

1 1/2 cups unsweetened instant tea

2 teaspoons ground ginger

2 teaspoons ground cinnamon

1 teaspoon ground cloves

1 teaspoon ground cardamom

Directions

1 In a large bowl, combine milk powder, non-dairy creamer, vanilla flavored creamer, sugar and instant tea. Stir in ginger, cinnamon, cloves and cardamom. In a blender or food processor, blend 1 cup at a time, until mixture is the consistency of fine powder.

2 To serve: Stir 2 heaping tablespoons Chai tea mixture into a mug of hot water.

Note:

You may choose to omit the French vanilla creamer, and use 2 teaspoons vanilla extract instead. To do so, mix the vanilla into the sugar, let it dry, then break the sugar into small lumps. Follow the same procedure as above.

You can spice it up even further by adding 1 teaspoon nutmeg and allspice, and 1/4 teaspoon white pepper. Makes 36 servings. 

Warning, the rest of this plays like a dumb blonde joke, except it is the dumb chemo-brain joke.  Does anybody want to guess at what I did?  I go to the store to gather all the ingredients.  I have everything I needed except one thing.  By the way the cardamom is expensive, but this recipe makes a lot of tea, and the taste is worth it.  (You can buy it whole and grind it in your coffee grinder to get it cheaper.)  What one thing did I spend at least 15 minutes looking for?  Yep, the first "ingredient" on my list, instant chai tea mix.  DUH, that is what I am making, not an ingredient.  I hope you will all admit that it looks kind of deceiving, but still I should have figured it out by there not being an amount of it to put in the recipe.  I got home and felt like a goofball when it finally occurred to me that wasn't one of the ingredients.  Ughh, so I am going to try again tomorrow perhaps on the way home from chemo.  I did end up buying some kind of chai latte mix, but I knew that wasn't the right thing, as it had other stuff in it.  I just knew I was looking for plain chai tea mix.  I was thinking about taking tea bags and seeing if I needed to rip open a bunch.  I am so glad I figured it out.  I thought our store was just not carrying everything I needed.   So glad you can all enjoy my dumb moment.  Let me know if you try the recipe.  It truly is good stuff to keep on hand.   

Thirty-Five and Counting

Yes, I had a birthday, and I am now officially 29.  Oh, did I say 35?  My mistake!  Ha, ha!  It was a wonderful day.  I was with my family, and Mark was even there, and Kristin, and Rachel, etc., etc.  I couldn't ask for a more perfect day.    We were in Indy for the weekend to celebrate my and our E's birthday.  Their downtown rocks.  We ate at Weber Grill one night and P.F. Changs the next.  The guy at PF Changs was just a little sloooooooowwwwww, but it was all good.  Our food was good, and so was the little desert I got because it was my birthday.  Next time I go to Weber Grill, I am totally getting the kid's meal.  It is amazing what they get, and there is ice cream in a waffle cone for their desert!  I woke up late the next day on my actual b-day, and Rach came in to get me up.  I got up and had the best birthday shower ever with a double-headed shower.  Super nice.  Then Josh came to take my Starbucks order as there was one in the lobby.  Yep, like I said, it was a good day.  

To top it off, I got to shop at an outlet mall that day with birthday money.  Found a couple of cool things for meself.  Sorry the pirate speak sneaks in there sometimes.  Then my dear brother (not really in-law) gave me a beautiful painting that he had bought for himself in China.  He gave it to me because it reminded him of us adopting Emma Mei.  It is beautiful, and it is truly one of the sweetest and most beautiful gifts I have ever received.   Can we just say, it was a day filled with emotion--good ones though!   I am going to miss him this year as he will be traveling abroad.  

My jaw seems to be improved.  It still has some flare-ups of pain, but it is definitely a whole lot better than it was.  At least I am not having to pop the pain relievers every four hours.  What I don't know is if I will have to stay on the antibiotics for a whole lot longer or what the oral surgeon will do.  I go back to see him next week, so we'll see what he says.  I am just happy to not be in pain all the time.  

I still have plenty of fatigue.  The cool product that I am waiting on is on backorder.   Apparently it is so popular, that they did not expect the kind of demand that it has had.  It is a Shaklee product.  If you know anything about Shaklee, they don't do anything unless it is first class/top quality.   The product is called Vivix.  It is an anti-aging product that works at a cellular level.  I cannot wait to get my supply.  It helped me that much.  I could definitely use the help with my energy levels right now.  Otherwise, I have to depend on good ole' caffeine for the extra boost.   Not too healthy, but it works.  Vivix actually has proven anti-tumor activity with the resveratrol that is in it.  It has the benefits of drinking about 30 glasses of red wine without the alcohol in one serving.   It truly is an amazing scientific breakthrough.

 

I have been taking lots of pictures for others and myself.  I have a project I need to work on, but it is probably going to take a day of picture taking by myself.  I don't know when that is going to be able to happen.  It will be cool if I can accomplish it.  I enjoy my photography so much.  It gives me a place that I can go to that is actually mine.  Something that I helped to create and capture a moment in time.  Those moments go all too fast, and some of them just need to be preserved.  

So raise your glass to many more birthdays and celebrations for all of us!  We will take every one that we can get.  They are all special!  

The What Up

My jaw hurts. It turns out that the "cold sore" that I have been fighting since May is actually exposed bone. I am hoping and praying we can get the right stuff to help it heal, but it is a crap shoot. It is a nasty, nasty rare side effect of one of the bone strengthener drugs I have been on. The doctor has taken me off of it for now as I do not have bone involvement at this time, but it has a 10-year half life. The only course of action is to try antibiotics and a special mouth wash. Depressing. I am off to see the oral surgeon on Friday as they are the only ones that seem to have some knowledge about this kind of thing. I could hardly get an appointment with her until I told the lady I had exposed bone. Then it is like "OH! Let me get you an appointment.". Even my onc. had never seen this before, and she didn't think it was the osteonecrosis thing. I have news for her. I am almost positive that is what I have. Yes, I google my stuff.

I did get a break of sorts this past ten days. I tried this new product that a friend sent me a 10 day trial of. It really boosted my energy levels and I did so much better with sleeping at night. If I could only afford it. It must be like an elixir of the gods--Ha, ha! It really is a wonderful product and the ingredients have proven anti-tumor activity. I found myself unable to sleep the other night, and I just realized I had taken my last dose the night before. Ah, it was nice while it lasted. Maybe we can sneak it in the budget, we'll see. If you want to know what this great product is, just e-mail me. I'll tell ya all about it.

Chemo today. Can't sleep at 5 am. Steroids. At least they make my mouth not hurt. One good thing about chemo, it eases the pain for a few days. Maybe I am just looking forward to the chocolate chip cookies a friend said she would bring me at chemo today! Can't wait, been craving me some good cookies.

Ah, blah, blah, blah. Life really has been pretty good now that Emma is healed up. I felt excellent yesterday, and really did some stuff. I am sore now from all the extra activity, but a good sore! I basically forced myself to get up and move without overdoing it. I have been sewing Katelyn's halloween costume. If you don't look at the zipper, it looks pretty darn good. Just a few mistakes here and there. BUT, it is just a costume, right? I am into sewing lately, so my new motto is to not make anything with a zipper. I think I can do that. I want to improve my mad skillz. Ha! We'll see how the next little project goes. I am also trying to go hand made on a lot of Christmas gifts this year. So we'll be gettin' our crafty side on. I have work to do folks. Maybe those steroids will come in handy--just kidding. Gotta love the druggie jokes from a cancer girl who has a load of them in her cabinet. Whaddaya need? I probably have it. Blood pressure? Pain? Anxiety?

I guess I am just feeling goofy this morning. Take it for what it is. That is the what up.

End of Inscanity

So, I actually was able to end the inscanity on Friday.  I hate to kick the good looking Johnny down the page, but I thought you all might like to know about my scans too.  I realized Thursday night that I didn't have a doctor appointment until the 10th, which is nice, but it doesn't get me my results.  I ended up just calling the nurse, and she called right back and gave me my results.  It was so easy.  I liked that sooo much better.  

The results were good.  All the tumors were either stable, less conspicuous, and possibly smaller.  My tumor markers are down from 86 in June to 53 this month.  Normal is below 35 or so.  We are slowly making progress here in the right direction.  I haven't talked to the doc, but I am assuming we will continue the course of treatment until we get those normal results.  It does help to know we are continuing to get somewhere.

The last three weeks were killers though.  After the thrush, hospital visit, anemia, and general lack of energy, I was really feeling like my energy level was never going to recover, and that I was destined to be attached to the couch.  We went to the zoo last Monday, and I just kind of went from bench to bench.  It was really depressing.  I tried to enjoy it, but I was just so exhausted.  Thankfully by Tuesday, I felt a bit better, and my energy levels have continued to improve.  I was actually able to get Katelyn's and Emma's closet ready for school and clean it out on Saturday.  I am giving myself Neupogen shots for the seven days after the 2nd treatment.  It isn't too bad, and I think that the shots are what are helping me have energy again.  My body isn't having to fight as hard to keep the white counts up.  It does give you some bone pain, but nothing that Ibuprofen can't improve.  

That's the news from Lake Wobegone. . .

Yo Ho, me hearties, Yo Ho

Me and me mateys are thrashin' about in the sea of Thrush, where a great, giant wave wash over me and sent me to me cabin for many days.  After thrashing about in me bed while me mateys tried to keep control of de ship, I be losin' count of de days.  The scallywag thrush pushes me into de burning fe'ers on a Saturday and forces me and me mateys to land on de island of Hos Pee Tal.   De Medicine Man there is a decent mate, but no one likes to see 'em.  De Man has some nice lasses to help me get de grubs and potions me needed to sail the seas again.  Medicine Man says me white counts be low, and then he says me red counts be low.  De Man gets me a couple pints of blood.  Me wishes it were some grog instead, but alas, it did make me feel better.  I was pining to sail de seas, so by a Tuesday dey lets me go back with me mateys.  I still be weak but gettin' me sea legs back and I'm back to sailing for de booty again.  That blasted X is just a gettin' closer.  Yo-Ho-Ho!

To interpret, the thrush wasn't getting better after a week on meds.  I started running a fever on Saturday, so Josh and I had a hot date in the ER.  They saw my white counts were low, so they kept me, and started me on antibiotics.  By Monday, my reds were down and I ended up needing 2 units of blood.  I was sooo sleepy before they gave me the blood from the anemia.  The Lacks Cancer Center at St. Mary's has a great inpatient unit.  They have their own kitchen, and you can order anything from their menu that you want at any time from 7 am to 7 pm.  So if you want 6 meals, you can get them.  My mouth finally started improving by Monday, and my counts were up enough that I could go home on Tuesday.  I didn't have chemo this week.  It's a good thing as I am still recovering both physically and emotionally.  Something about the hospital just knocks it out of you.  Well, that is my saga.  

Yo Ho, me hearties! 

PS:  The pirate story was one that I made up to amuse myself in the hospital, so I posted it to prove to my dear husband that I really am crazy!  Ha, ha!  

Thrush and other updates

I am currently battling a very bad case of thrush this week, which is unfortunately my week off of chemo.  I've had it before last winter, but it wasn't this bad.  It hurts to swallow, talk, or anything.  My entire mouth and throat just hurt.   I can't taste anything, and I just generally feel crappy.  The meds are just taking longer to kick in, because I have a bad case of it.  Ughh.   Any prayers for the meds to start working are appreciated!  

My blood pressure has been high lately because of the Avastin, so I am going to be starting on blood pressure medicine.  I just have to pick it up at the pharmacy, but I haven't really felt like getting out these last couple of days.  

My next scans are scheduled for Aug. 27th to see how the new combo (Taxol/Avastin/Cisplatin) is doing.  It should be nice getting them done at the new cancer center, so I get to look at the cool mural thing on the ceiling!  Other than the latest thrush thing, I have been feeling pretty good once I sleep for the first couple of days after chemo.   I have been dealing with a bit of yucky feeling in my stomach the days/weekend after, but I think I finally found an anti-emetic that works.   The fatigue will tend to build up, the doc says, but as long as we are getting rid of Cilgamore, I am happy!  

A Long Day in the New Digs

Our new "cubbies" for spa day with our own LCD tv.  Suh-weet!  

 the healing garden right outside the infusion area

I am so getting my CT scans done here next time, just so I can stare at that cool thing in the ceiling!

Wednesday was the first day to add in the new drug to replace the one that I had a reaction to: Cisplatin.  My onc. is giving it with a little different protocol than normal in order to de-sensitize my body to the drug.  The drawback is that it takes ALL day to administer it as they dilute it with a lot of fluid.  The computers were down on my first visit in the new cancer center, so that was a little chaotic for everyone.  Hopefully the internet will work better too.  I couldn't get to blogger to blog anything, and it has taken me until now to update things.    All that fancy shmancy stuff, and I just want to get on blogger!   

So far I have just been tired this week, but no nausea or anything, so that's good.   The doctor wants to keep on this type of combo that I am doing as I have had such good results with it so far.  Here's to hoping and praying we keep the good results coming.  

Hitting the Limits

It seems my day was not to be complete without some excitement.  We started my Carboplatin today, and I reached the limit of how much of it I can have.  I was on the phone with Josh and I started feeling itchy in my throat and eyes and everywhere.  I said goodbye to him and called for Carol, my nurse.  She said I was having the allergic reaction that she always tells me to watch for, because the more you get of Carbo, the more chance you can react.  I immediately had 3 nurses around me, one give me oxygen, one giving me a shot in my iv to counteract the reaction and some benadryl, and one giving my saline.  I started getting a rash on my arms and my ears and face turned red.  It took two doses of the drugs before I started really improving.  It was just crazy!   It is very difficult to be so itchy when you are surrounded by other people when all you want to do is stand up and scratch all over, but it finally started subsiding and eventually went completely away after we left the cancer center.  

Everyone next to me kept asking if I was okay.  I guess I provided them with some good entertainment!  A sweet older African American friend named Willie, was leaving at the same time I was and announced that she and I were going to go hit the bar, get some drinks, and go dancing.  Then she proceeded to do a little dance right there for everyone.  Ha, ha!  Good times.  Willie is moving out of state soon, and I am going to miss her.  I wonder how old she really is.  I am guessing she would be old enough to be my grandma.

My doctor will put me on another platinum chemo, probably Cisplatin, for the continuation of my treatment.  As many of my other mets friends will tell you, having metastatic BC is like running a marathon, not a sprint.  That is why we will stay on a drug (keep running) as long as it is working and we tolerate it--especially if we are gaining ground.  If we fall and scrape our knee, we get up and keep going.  Today's good news gave me that boost I needed to keep running.  

Reeesultz. . .

To borrow an idea from my friend, Elizabeth's husband.

The word on the street is:

Shrinkage...

Get Smaller. 

Reduce in size.

Contract.

Shrivel.

Disappear.

Telescope.

Minimize.

Lesson.

Curtail.

Decrease.

Diminish.

Reduce.

Cut.

Decline.

Dwindle.

Drop off.

Go Bye Bye!

DIE CILGAMORE DIE!

In any language:

Shrink.

Encogimiento.

Rétrécir.

Krimp.

Psychiater.

Συρρικνωθείτε.

Strizzacervelli.

Psiquiatra.

Сокращение.

收缩.  (I had to add the Chinese characters of course!)

The official word is less prominent and smaller.  Tumor marker blood test is down too!  Yippee!!!  Staying on course with the chemo at the very least for another month or two.  Thank you for the encouraging cards and e-mails.  I especially liked Sara's:  You know it has been a good day when you didn't hit or bite anyone!  (a quote from a young boy).   Ha, ha!  Isn't that great?   I was amazingly at peace all week.  I don't know how much of that was from pure busyness (yard sale, piano recital, end of school stuff, open houses, etc., etc. . .), but I know all the prayers and happy thoughts had the biggest part in it all!!  

A Quick Post Pre-Benadryl

At the lake in the UP at Winell's cabin: July 2006

I get sleepy when they give me the Benadryl, so since I am already a bit tired, I thought I should get a quick writing in.  

My platelets were low this morning, so I am getting a little less of the Carboplatin today.  I was tired yesterday, so Emma and I had "pajama day".  We were originally going to work on pricing yard sale stuff yesterday, so I am glad that it didn't work out and I could stay home.  I told Josh this morning that I thought something was low in the red count category as I was so tired and I was looking pretty pale yesterday and today.  

I cut back on my steroids last week per docs orders.  I took only 5 instead of 10.  I did not have any reaction, so this week, I am down to 3!  I am just hoping that I don't have any reactions today while I get my chemo.  It is just a touch un-nerving.  The next couple hours will tell.   It is so much better already having cut out half of them.  I have less problems with sleeping and I don't get as puffy and swollen afterwards.  Yeah for that!  

Here is a photography related quote from Vincent Versace as a guest blogger on Scott Kelby's Photoshop Insider blog.  It was an inspirtational read for me this morning, and I felt that it could apply to life as well as photography.  The post is about how to let your photos "take" you instead of you "taking" them.  It is about how sometimes, the simplest, most mundane photos are the ones that capture a moment in time.  The first paragraph has doubly the meaning for me as that is one of the reasons I do love photography as a hobby.  

We did not decide on photography as a hobby or a vocation because we needed a place to spend money so we have enough equipment to start a camera store. We came to photography because the world moves us in such a way that we want to photograph what we see so others can be moved the way we were, at least that is why I do it.

So what I invite you to consider is this, next time you go out to shoot, slow down to the speed of life instead of trying to see the world according to a predefined “check list for photographic success” which does not allow for random acts of life. What happens when we confine ourselves to someone else’s definition of correctness is we come up with images that are the same and we take them over and over again.

It is in absolutely spontaneity that we find absolute truth. To be taken by a photograph is to tell the truth of the moment. It is through spontaneity that we find the ability to take extraordinary photographs of simple things. It is easy to take a mundane photograph of an extraordinary thing, the extraordinary thing does all the heavy lifting. But to have the ability to take extraordinary photographs of the everyday…. Not only will you have been taken when you do this, but you will have created an image that will take others there with you. The architect, Ludwig Mies van der Rohe, expressed this concept the best, “An interesting plainness is the most difficult precious thing to achieve.” Think about all the great photographs that moved you, that took you, were they not of the simplest of things?

So again, I invite you to slow down to the speed of life, make visual poems that take the viewer the way you were taken. To visually speak poetically and to write with light using the language of heightened emotion. But most importantly be sure to make it so you always allow yourself the buzz of being taken by your photographs.

In other words, slow down and enjoy life.  The simple things/moments can be the best ones.  Okay, enough of my thoughts for the morning.  

Off to take a nap!  

Another Week Off

My white counts were too low this week for chemo, so I have the week off.  I feel just kind of eh about it.  On one hand it is nice for a break, but on the other, it is less fighting power.  Oh well, it is what it is.  I will start getting Neulasta shots after my second treatment from now on to keep my counts from getting too low for treatment.   Hopefully those will keep things on track.  The only bad thing is that I will have to go back into the doctor for the shot the day after the second chemo.  

And as far as scans--slight change, they are now scheduled for May 28th.  

Energy levels have been up and down.  I got a little yard work done yesterday, but had to lay low today.  We are planning a big day tomorrow at the Tulip Time festival in Holland, so that should be fun!  Pictures will eventually show up at Fisher Journeys!  

Scan Scheduled

Scanorama is set for May 30th.  I will probably will not  think about it until the week before, but I just wanted to give a heads up to everyone else.  I hate scan time as it wreaks havoc on you emotionally, but it is a necessary part of the process.  I just get soo nervous the week before and after waiting on the results.  Last time, my doc thought my heart was possibly being affected from the chemos, but it was just my nerves making my pulse race and my blood pressure high.  Nice.  Maybe they should give me some valium to take the night before or something for my nerves.  

Week Off & Spring Cleaning

I had a burst of energy this past weekend.  I am not really sure where it came from (unless it was from Ben's special espresso on Saturday), but it was nice.  It all started with cleaning out the junky closet in Emma's room.  Her clothes are all in Katelyn's room, so Emma's closet was a catch-all.  I guess I got carried away, because then I cleaned out my clothes and rearranged our bedroom.  My friend and I are having a collaborative yard sale at her home next month, so I keep sending loads with Josh to their garage.  I keep having this wish that it would have the floor just drop out and take all of our "stuff" and spit out a few hundred dollars like an atm machine.  Wouldn't that be nice, Rhonda?  It is just sooo nice to clean out stuff, and simplify.  I have been drawn to take on a more minimalist lifestyle.  Less is better.  I am not talking extremes, but just about keeping only what you love and really use. For example, the girls don't need the entire town of little play houses, one or two are just fine.  It is really a freeing way to think.  Now if I could only make myself think that way about cute girl's clothing!  Ha, ha!  I felt so energized and liberated after all of that cleaning.  It was literally like an adrenaline rush.  I didn't feel the fatigue from the chemo at all.

I did have a long nap on Sunday, and  I was able to sleep in today as Josh is home on Mondays. If I get my sleep I am usually okay, but I think my energy burst depleted so I haven't accomplished as much as I wanted.  After digging around in the garage attic this afternoon, I was pooped.  Since this is my normal week off from chemo, I am going to try to only do one area/closet a day until I am done.  Unless of course, I get another sudden burst of energy from the sky then I will do more!    

New Schedule

I just finished one round on a new schedule, and I am starting the second round today.  My doc changed me over to 2 weeks on with one week off to keep my blood counts from dropping too low.  She was considering changing it anyways, and when I told her we were going to be out of town the 3rd week, she decided to do it.  

I feel better/worse on different days now, so I am having to feel it out.  I was really tired the last couple of days where before I would start to perk up the two days before my next chemo.  When I saw the doc today, she did say my counts were low, but not too low for chemo.  She also said that my tumor markers are coming down each month, so that is good news!  We are planning for scans in May sometime.  I don't have a date yet, but I'll keep you posted.  

Chemo Day Mosaic

Jessica

I wanted to ask for prayers for my friend Jessica. I have a link to her blog on the side. We met at the conference in Florida when she sat with me at the first workshop. She was in San Diego visiting family when she fell and broke her hip. She was using a cane at the conference. This past week, her husband flew from Texas to help her get home, but she suddenly lost feeling in her legs. She had to have surgery to remove some broken vertebrae and the tumors. There was a huge one wrapped around her spine. We are praising God that she did come through the surgery okay, and was able to move both of her feet!! She is also starting to get some good tingles in her legs. She is having a second surgery today at 4 PM PST to insert some metal supports for her spine before she can come home to Texas. Please pray for Jess and her family as I know this has been a super hard time for her. They have 3 girls at home. She is such a sweet person and I hate to see her struggling so much right now. I hope I got all the details right. Her husband is posting pretty regularly to her blog to keep us updated.

Back in the Saddle

Gearing up for a doctor's visit and a big chemo-cocktail day tomorrow-err actually today. I am up using up my last of my week of feeling good. I am also hopped up on steroids for the evening in preparation for tomorrow, so that encourages this natural night-owl.

It was great to have a break. I really started to feel good by this past Thursday. Katelyn was home sick for two days last week, but thankfully I haven't come down with her illness so far. I may be speaking too soon, but my counts should be back up now. It was actually really, really nice to hang out with both girls on Wednesday and Thursday. Wednesday, Katelyn was in a nostalgic mood, so she played all of her home videos that we have on tape. That literally took ALL day. It was so funny to see Emma watching Katelyn as a baby and trying to imitate her. Katelyn gets sad when she watches the movies of her birth because she misses Sunshine. We just spent lots of time cuddling and talking about how it makes her feel. It also made me sad that we don't have those kind of baby videos of Emma. I need to get all of her tapes copied over, so that she can watch the ones that we have so far.

On Thursday, Katelyn was feeling better, but still in that 24 hour contagious period for a fever. She and Emma played together all morning and some of the afternoon, pushing their baby strollers around and generally getting along really well. The sun was shining in the windows, and we just had a great day with the three of us. I am so glad that we were able to have that break from the routine of school and chemo. It was so refreshing and just what we needed.

I am preparing myself mentally for possibly not feeling good again now. Gotta gear up to get back in the saddle, but all in all, breaks from chemo are not necessarily a bad thing.

A Video from YSC Conference

Just linking up to a cool video from the conference.