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.

A Candle for Cathy

Some of us in the YSC (Young Survival Coalition) community are lighting a candle tonight for one of the girls on our board. We call her "Mama Cathy", because of her way of encouraging and helping others. Cathy always has a kindness about her as she offers words of wisdom. She was all set to come to the conference, and we were all so excited to meet her. Unfortunately, she had progression and was unable to come. Cathy is in the final stages of the fight at MD Anderson in Houston, and we are all thinking of her and praying for her. She has been pretty comfortable thus far, and she is surrounded by her husband, her 3-year old little boy, and many family and friends. I am also lighting this candle for many of the others on our board who are struggling right now.

Duh!

I just realized that that link that I sent out for my blog in my e-mail had www in front of it when it totally doesn't have to. It must be the OCD in me, but that just bugs me. So, the link works, but it is a lot easier to just say: amylfisher.blogspot.com than to add the www on there.

Just had to share my Duh! moment.

Oh, What a Beautiful Morning. . .

Cross-posting from Fisher Journey's!

Is that legal to do the same post for 2 blogs? Ha, ha!

Well, I guess it is, 'cause I just did it.

A Response

I got this comment from Steve (His Servant) on my More Thoughts about the Conference post, and it made me think about how others respond to what I/we are going through. So I thought I would use it (with his permission) as a springboard to talk a little about it.

I often, (as I think many of us do), find it hard to express sorrow and sympathy to you because I fear you can discredit everything I might say. I have nothing to compare to the difficulties you have had in your life. I have not walked in your shoes. I cannot begin to understand the difficulties you face everyday. You have a great appreciation for every God given moment. It is my prayer that God will continue to give you good health and that we might know how to better express ourselves to you.

My first thought is that I am extremely humbled that others feel so much sorrow and sympathy for me and our family. It means so much to know that we are so loved and cared about by so many. It is kind of a hard pill to swallow though, because it is one thing when my illness just effects me, but it doesn't. It also effects many others that are in my life, and that is one of the things I hate. It just truly sucks. I can handle it, if it was just me I was worrying about, know what I mean?

My second thought is, I would truly accept any expressions of sorrow and sympathy from anyone--and I wouldn't discredit you, I promise!! The speaker at the conference had some good points on grief. The reason her workshop really wasn't helpful to me is because I have learned through my life experiences to grieve my losses as they come. In turn, those experiences have helped me to be able to do that with my current situation as well. That is the beauty of it. I am able to deal mentally with my situation for the most part, because of the hard experiences I have had. I had some issues with some of the speaker's other statements and quotes she used such as the one I previously mentioned to the audience she was speaking to, but I think she did make a good point on grieving your losses as you go. I know that was helpful to some of the women who had never really thought about that. They always associated grief with a death of some kind and not with all the little losses in your life. I also know that the prayers of others and the support of family and friends has also help us get through the tough times. I have my bad days, of course, where I just feel down in the dumps and wonder "Why me?", but I have found that I can't stay there for very long. Call it short-term memory loss if you will. I am definitely not in denial, I just try to live in the moment. So if I am sick, I live in that moment. If I am feeling good, I am living in that moment. If I am sad I am living in that moment. Heh, nothing like being moment to moment!

My hope is that by being able to keep you all informed through this blog and you all being able to respond and comment on the blog, that when we do meet/talk in day-to-day life, our conversations do not have to center around cancer and all that jazz. I like being able to talk to people about the normal things like how their life, kids, job, is going. I like talking about my family, my kids, photography, shopping, and just about anything. If my health issues come up, that is fine too, but I don't like it when it the first and only thing someone asks me and then there is just that awkward silence. I am still here, living large, and trying to make the best of every day. Defining a new "normal" for our family if you will.

I have found that even though we have been through a lot, that there is always someone, somewhere who has it worse than me. Every day truly is a gift, and I strive to live by that. I could be in a lot of pain and needing pain medication all the time as some women with my disease are. I could be paralyzed from the cancer eating away at my spine as one woman on our YSC board is. I could be walking with a cane, or have heart failure from chemo. I could live in a country where there is no insurance or even treatments for this disease. That doesn't mean this is easy. Far from it. It is hard to not know what your future holds, and be much more aware that we all have an expiration date. It is hard to wait for scan results and experience all the fear and bad thoughts about the worst possible scenarios. It is hard to come home from chemo and feel like doing nothing but sleep. But as I have told a friend. I would take the cancer away if I could, but I wouldn't take away the perspective it has given me on life. I am much more grateful for the little moments nowadays. Those are the ones that make life good. I have seen a quote somewhere that says something to the effect of: We are all dying. Cancer patients are just more aware of it. So yes, here comes the stupid bus analogy again. Any of us could step out in the road and be hit by a bus and be dead tomorrow. Living with stage IV cancer is like standing on the yellow line and waiting for the bus to hit you. Okay, enough with my stupid morbid jokes. I know not all of you can handle that stuff! Ha, ha! I am not going to go mountain climbing and all the rest like in the country song, but I will try to enjoy every day I have with my family and friends (although, it would be nice to do some world travelling sometime). Really, every one of us should do that. None of us know our expiration date.

Please just don't put us on a pedestal. We are definitely human. In fact, if you really knew us well, you might be super surprised at just how human we are. Just because you don't see that, doesn't mean it isn't so. :-)

Thank you for the prayers and thoughts. They truly help to get us through! We couldn't do this without them and all the help we receive from everyone.

A Week Off--A Welcome Break

No chemo (Taxol, Carboplatin) today. My blood counts were too low. I get the next week off too to let my white blood cell counts recover. I was feeling really super fatigued this past Saturday and Sunday, so I must have been pretty low this weekend, because I was already feeling better Monday and Tuesday. So now I am neutropenic (where you have to be super careful for infection) until the counts get back up. I am glad I am getting a break as it is better than ending up in the hospital. Although, at one point on Sunday, I was thinking that a nice quiet private room at St. Mary's with a lcd widescreen tv, unlimited internet, and all the food I want might not be so bad. Their cancer center rocks. I don't really want to go to the hospital, but I did have the thought cross my mind.

I still am getting Avastin today. Avastin is a new drug that was still on trial when I started it. It has since been approved for use in breast cancer treatment. It is not a chemotherapy. It is a drug that targets the blood vessels of the tumor. It has had good success in colon cancer patients and I believe lung cancer patients. A lot of the ladies I talk to that are on Avastin have had some good results so far. The only side effects that it has are what we girls call the Avastin snots, yucky bloody snot, really dry nose in the mornings, slower wound healing, and sometimes bloody noses. So far I haven't had any really true bloody noses. I can deal with the snot.

I was planning to make a mosaic picture board of my day at chemo, but it will have to wait until the 26th so that I can get some more pictures as today's visit was too short. Look for it to come. I hope I can get some interesting shots.

This break comes as a welcome reprieve even if only for a couple of weeks. It can be kind of daunting to not have an ending date for chemo. I know I at least have 3 more months and probably more than that. As long as I can get some breaks, it really helps me mentally. I also am going to ask Dr. Yost on the 26th what her goals are to reach before thinking about switching me to a hormonal. That may give us some clue as to what we are looking for as far as blood work and scans.

More thoughts on the conference

I've done some more thinking about the conference workshops, so I thought I would blab here. I may have had too high of expectations for them for the first thing.

The first workshop was supposed to be "Living Well with Advanced Breast Cancer". Well, in my mind that was going to be practical advice, maybe organizational tips, things to do to help in your day-to-day life, etc. Well, we got in there, and the "title" had changed. Same speaker, but it was a different topic. A lot of women were wondering if they were in the right room. The title was "Living Well: Coping with Cancer and Healing through Grief". I know that it ended up being really good for some of the women, so I don't want to discredit it completely. It just wasn't what I needed/was looking for. The speaker was a young woman, a social worker who works with cancer patients. It seems that most of her experience came from the work place and not really on a personal level at all. Did I say, she just seemed "young"?? What does that make me? She also had really gorgeous hair that she kept fiddling with. It didn't really bother me, but I know that can be a sensitive thing to other women dealing with hair loss. I do give her the fact that of all the women to speak to, a room full of stage IV girls is not going to be an easy crowd.

For me, it was really stuff that I had heard or read before. It just seemed like common sense stuff to me, but I realize that my own personal life experiences with the loss of our Sunshine and Josh's mom before her was when I really learned a lot about grieving and grief. Josh and I have even given workshops on grief in the past at our local church association conferences. It really is an important topic though, and if you have never been introduced to the fact that grief can consist of loss of even small things, then it may help you to learn to work through those losses as they come. For women with breast cancer it can be many things, and with advanced breast cancer even more things. You have lost your breasts, your hair, your past sense of normalcy, perhaps your ability to have children or nurse any children you may have, your sense of "innocence" in life, and your ability to feel invincible. Some women may lose their spouse through divorce, their friends who cannot handle their diagnosis, and their very dreams for the future. For women with advanced breast cancer, we lose a lot of our week to treatments and recovering from them. We lose energy to take care of our families and spend time with them.

One of the quotes that really bugged me in the workshop was by Dr. Henry Cloud. "[Grief] is the process by which we 'get over it,' by which we 'let it go'. . . It becomes the process by which we can be available for new, good things. The soul is freed from painful experience and released for new, good experience." Then the speaker says something to the effect of--doesn't that just sound like a good ending. I actually laughed sarcastically out loud. Get over it. That just sounds sooo harsh. You don't ever truly get over it. Grief changes you, and yes, you can have good experiences, but that doesn't just replace the painful ones. The pain in my heart can still be felt as sharply and deeply when certain memories are recalled especially surrounding the loss of Sunshine. I haven't held on to them bitterly. They are just still there, and they actually help to make my new experiences good in that I can appreciate them even more fully. I could go on and on about this one. Since I am always one to give the benefit of the doubt, I guess you could say that by "letting go", you aren't dwelling on those losses bitterly to the point where you cannot function. But to say that so flippantly to a room full of women who have truly experienced losses, seemed so wrong. It definitely rubbed me the wrong way.

A Little Background Info on Cilgamore

Cilgamore is the name that my friend, Kim and I have named the cancer. So hence, the name on my blog. The picture at the top is one that she had made for a t-shirt for me, and I just love the visual! I think I need a light sabre picture on here somewhere too!

So, Cilgamore, what exactly is it that I am battling here? For those of you who aren't sure what I have or what is going on with me, now is your opportunity to be educated! Back in December 2001, I was diagnosed with breast cancer. It was stage I, treatable, and with a 90% cure rate. I underwent surgery and chemotherapy. Fast forward to right now, I have some very small lesions in my liver that have returned (think mm's) that are breast cancer lesions. It is NOT liver cancer. The good news is that they are breast cancer, and there are a whole lot more drugs and treatments for that than there is for liver cancer. The bad news is that my disease is considered stage IV or metastatic. There is not yet a cure for breast cancer that has spread beyond the breast, but they are discovering new treatments all of the time. Really being a stage IV breast cancer survivor is not a death sentence as it once was years ago. There are so many women who are living many, many years with this disease. It is almost to the point where they will consider it a chronic disease. The reason at this time that there is not a cure, is because women with stage IV, or mets for short, will eventually die of their disease. It is considered a cure when that person dies of something else such as old age, or other causes. I don't guess that includes stepping out on the street and getting hit by the proverbial bus! Ha, ha. Just a side note of humor here. So right now, I am being treated with a pretty tough combo of drugs (3 weeks on and 1 week off), but they are working well as of my last scan 3 weeks ago. My oncologist said that she thought the shrinkage was significant considering I had only had 2 cycles of treatment. The goal is to continue on this combo as long as it is working and I am tolerating it. Then I would hopefully be able to go onto a hormonal treatment which can be less toxic and have less side effects. I will always have to be on a treatment of some kind. The hope is that the ones that work will work for a long, long time keeping things stable or unable to be seen on scans until the next treatment is needed. As they invent more and more new drugs, then they just stretch things out even longer. Really, the best thing for all of this would be a cure! So we keep on fighting and hoping!

That is Cilgamore in a very small nutshell. I'm trying to keep the details to a minimum to keep from confusion. I hope that helps those of you who weren't quite sure what the deal was with me, and who the heck Cilgamore is (slowly putting him into the past tense: was)!

8th Annual Conference for Young Women Affected by Breast Cancer

About 2 weeks ago, I had the privilege to attend this conference in Jacksonville, Florida sponsored by the Young Survival Coalition, Susan G. Komen Race for the Cure, and Living Beyond Breast Cancer. I was the recipient of one of their scholarships that paid for my airfare and my registration fee.

I flew down on a Thursday and was able to spend some time with one of my best friends and her family, then she took me to the conference downtown at the Hyatt on Friday. I was able to stay at the hotel on Friday and Saturday, thank you to the generosity of my family. Everywhere you looked there was pink stuff. As we drove up there was a van that said "Feel Your Boobies"! Ha, ha! You have to remember that this conference was for all young women who had been diagnosed with breast cancer under the age of 40.

There were about 800 attendants there. It was a bit overwhelming to walk in and realize that all of those women had battled breast cancer and they were ALL young. I attended the workshops specifically for women who were in my position: living with advanced breast cancer. Just the amount of us in that room was overwhelming. They gave out lei's for us to wear to identify how long since diagnosis or if you had advanced bc. There were a lot of us with orange lei's. Way too many.

There were all kinds of booths to look at, including one for Pure Romance that was so big if you just saw that, you might have thought you were at another kind of conference-Ha, ha! Some of the t-shirts we saw: "Forget the Whales, Save our Boobies", "Stupid Cancer!", "I went through chemotherapy, and all I got was this lousy t-shirt", "Trust your journey", etc. There were even little onesies for babies with different pertinent sayings. A lot of the booths focused on advocacy, healthy concerns, breast reconstruction, new drugs, and new blood tests that you can now get. There was one little boy signing books and giving them away the first night. His name was Luca, and he helped his mom, a breast cancer survivor, write a book called, "Chemo Cat". He came up to us and gave us his last books that he had to give away and signed our copies. Katelyn really liked reading it with me. Other booths sold jewelry to raise money for breast cancer research.

The workshops were not the best part of the conference. Really I wasn't too impressed with the first two that I attended. I think a lot of that is because of my involvment in the YSC bulletin boards. Much of what I heard there, I had already learned from the intelligent women on that board and my own research. One of the encouraging things that I did learn was that the Susan G. Komen foundation is now only giving their money towards research and not bc awareness. I think that is a great thing. If you are not aware of breast cancer when you can't even open a can of tomato soup without seeing a pink ribbon, then you have been living in a hole. We don't need awareness, we need a cure!

The best part was meeting all of the ladies that I had talked and cried with on the boards for dinner that night and making those connections. Many of us have young children. Some of them are married without children. Some are single. A few of the married ones without children even got married after they were diagnosed with stage IV bc. What a great response, showing their stamina and willingness to fight and live their life to the fullest.

One of the women that I connected with on Friday night, I felt a huge bond with. That is because, in the course of walking to the restaurant, we discovered that our husbands are both pastors at Baptist churches. I think that she is going to be a great friend and I am really excited to get to know her better. I met a few other women who are not stage IV, but they really weren't afraid to hang out with us mets girls (short for metastatic bc). I think because they realize that any one of them could be in our shoes. I did not feel that resistance to hang out with us that I have heard from other women who have felt isolated in support groups and things because they represented the worst case scenario in the breast cancer world. Anyways, I digress.

Basically all that to say, that each and every woman that I met from our board at the Young Survival Coalition was warm and inviting and welcomed me with open arms. That was what the conference was all about for me: Networking and meeting other beautiful warriors who have fought or are currently fighting breast cancer. Saturday night they had a dinner and then they opened up the dance floor. I danced only a little, but it was such a cool thing to "rock out" with these women and dance in defiance of the disease that has affected all of us. It was truly a weekend to remember.