Chemo day!

Alright, friends. Today is chemo day so I will be a little out of it today and tomorrow. However, you know I am prolific and will be back on the blog as soon as my body will let me. In the meantime, I thought you all needed to see a cute picture of Jack. I will try to plant one of Morgan on here tomorrow. They are truly fun kids...a little high-strung with some high expectations. I have no doubt that both of them will be running companies sometime in their adulthood. But, if we have our say, they will be doing it with humility and kindness. :)

I need to take some more pictures of a chemo session. If I remember, I will try to do that today so you can see what it is all about. I know I try to convey how it is, but I will just say again that the actual chemo sessions are pretty doable.

Please have an exceptional day!

Lolo

Questions?

Hi all! I added a post update (below), but wanted to make sure and let you all know that I LOVE questions and comments. I don't want to get too repetitive with my cancer 101 stuff or my nutrition 101 stuff so just let me know if you have specific questions. You can click on the COMMENTS button below to make a comment or question or email at loloplunkett@gmail.com. (The email address is listed at the upper right section of the blog as well).

Oh, and I don't have to "know" you in order for you to email or ask a question. It helps if you sign off with a name so I will have a frame of reference, but this blog is for anyone who wants to know about living with cancer and how it is done.

Have a wonderful night!
Lolo

Another anniversary!

Tomorrow is another anniversary. Michael and I will have been married for nine years. We have known each other for much longer and we dated for about three years before we married. Michael, when I met him, was known as one of the smartest guys in our business school. I found him intimidating, in a good way, and interesting. He made me laugh and he still does. Regardless of all the cancer crud, he can still make me laugh and he can still make me believe in myself.

I visited with one of my good cancer survivor friends today and we were talking about scans and how those affect us. Some survivors call scan time "inscanity". I would use that term a lot more if I had made it up. I wish I had because it describes how scans make me feel, a little crazy. Most survivors have scans every six months and then move to every year after they had make the two-year anniversary without a recurrence. This two year mark is a coveted anniversary because most recurrences happen within the first two years.

With me, because I have been stage IV from the beginning, I have scans every two months. As I improve, those will increase potentially to four months or six months, but it will take a while for me to get there. My good friend asked me how I get through so many sets of scans going on every two months and I told her that Michael is my biggest good luck charm. He gets all the results from the doctors and calls me...good or bad, he will take those results and call everyone in the family.

The truth is that we don't have a perfect marriage and we work on things all of the time. No one's marriage is perfect, but there is amazing room for love within the dance of marriage. We try to make eachother better and to understand each other as best we can. Sometimes we are right on track, sometimes not. But, I do know one thing...that I really got a great partner who knows how to deal with me and my disease. He knows how to accept the blows and celebrate the wins. I can't imagine anyone accepting me so well with all my scars, flaws and known tumors. He is okay with me and I am content with him. He really has the concept of being a teamplayer down...whether he learned that from his family or from being on an actual team, I do not know. But, having a good man believe in my ability to heal means the world to me.

He is a lot of other things, such as a strong leader and an amazing dad, but that is not what this post is about. This post is how he takes care of me and the truth is he does it much better than I take care of him. This nine years has flown. Even with the hardships of cancer, we still have an ability to see eachother for who we are in that moment and accept whatever that is. Of course, I read books about having a good marriage and keep trying to figure out how to get better...mostly myself. I just try to see my flaws before I see his and I think that helps me stay kind. I think kindness can only come from a loving heart and I always want to be loving toward others, especially such an accepting partner and friend.

I hope each of you feel truly accepted by someone in this world. My mom always told me that if I have even one or two good friends in this world, I should count myself lucky. I definitely do.

Blessings,
Lolo

Yesterday was a great day.

On most days, I am sure I could spend the whole day at the computer either researching or writing. It is becoming my comfort zone. Of course, I love riding my bike and am trying to get back on the bike more, but I have found that life is about balance. Writing and cycling both keep me in balance. So do my relationships.

Yesterday, my sister and I took the kids on a tour of a police station. We have a good friend who is my nephew's personal hero and who is a policeman. He gave us a tour of a police station where he works. It was so cute to see Morgan (7), Thatcher (5), Jack (4) and Landrum (nearly 3) walk around the station. Mo, Jack and Thatch were ready. Landrum was a little hesitant about seeing a jail, though, in his playtime he even locks my mom up in jail. Too cute!

We got to see the dispatch and the jail and just walk around the station. They also got to see the police car with the lights on. They have all ridden in a car before, too. They LOVE the car. Thatcher, who has been anticipating this moment for about a year, had a prepared question. It was pretty adorable. I swear it is moments like this that keep me human and grounded. Like I said, if given the time, I could probably sit at my computer all day or just study and read all day. But, my kids and my nephews on both sides of the family are such a blessing.

I am sure most of you parents and aunts and uncles would agree that kids keep us young. I think they also keep us honest and they help us to be real people. My kids wouldn't let me be phony person if I tried. Morgan would have me pinned against the wall with her truthful personality and I am glad for it. I still can get lost in my writer's head. I can create theories and stories all of the time, but then they are can fly out of my head as quickly as they came in. Because I am so busy with the kids, I don't have a lot of time to write now.

But, the playing with my kids does feed my soul so that I can go back to the drawing board and rethink my writing ideas. I always talk about my book on this blog and elsewhere. Well, I have about three books in my head. I am actively working on one, but there are a couple of other ideas that have popped into my head. I usually wait to see if any idea keeps coming back to me. Right now, all three have come back to me and are waiting for me to do something with them. These are all books about my story, a breast cancer survivors story. They are just from different vantage points.

Today, I am going to brainstorm with a friend regarding one of these ideas. I can't really tell you about the ideas because I want them to be a surprise, but for now I am just excited that the ideas are flowing. Spending time with my kids and nephews helps me to feed the writing side in my personality. So does cycling and a variety of other things. The irony about my cancer is that it has made me slow down and, as a result, I am actually living my dream of being a mom and being a writer. Funny how that works, huh?

What is that old adage that life is what happens when you are planning! So true. I still plan, but I try to let life happen more than I used to. I am living in the eye of a storm called cancer, yet I am able to live a relatively productive and peaceful life. I am more content than ever before because of the love that surrounds me. Life is good. I hope each of you are surrounded by love and are living your dream!

Blessings,
Lolo

A quick picture.

Here is a quick picture of me in one of my new hats. I have lost most of my eyebrows now and most of my eyelashes. In truth, you can hide looking sick if you have wigs, but it is hard to draw in the brows and wear fake eyelashes. It is not really my thing. I will do it on special occasion. The fake brows are way easier than the lashes...I imagine poking myself in the eye quite a bit. We will see how it goes when I try.

People have said they really like my hats, but once again, there is really nothing special to my hats. I avoid baseball hats as they make me look bad...in fact, it is hard to fill out a baseball hat with no hair on the top of the head. So that is why I avoid them altogether. Beach hats are great for anyone, the same with newsboy type of hats. Most of mine I have gotten at Wal-mart, Gordmans. I did splurge to get a couple at Nordstrom's when they were on major SALE. Otherwise, at hat look is totally achievable.

Blessings,
Lolo

Half a percent.

So, in my laymen's understanding of cancer diagnosis, I will tell you that lymph node involvement with cancer CAN be a prognostic indicator that the cancer will recur in the body, but DOES NOT always mean this. This is where the adage "Everyone's cancer is unique" really comes into play. I think it is important to note that when physician's are using these indicators, a lot of times they are using standard studies that evaluate everything on a five-year length of time. That is why they tell you your odds of living in five-year terms.

Now, if you are a young person like me, you will find the odds of living beyond five years to be more than shocking and a little insulting. The same is true for any statistics regarding survival within five years. Once they gave me any number less than 100%, I told them I wasn't interested in the information. There is actually an internet tool that doctors can use to enter in your type of cancer and the meds that you use and your survival stats will shift based on the treatments you do. A bizarre way to manipulate data.

I remember being irritated with my first oncologist because regardless of the data he entered in the search engine, I never got to 100%. I was an A student my whole life, and just wanted a chance to get an A, but I was barely making a B in this classroom. So, I decided their measures were measures they would use for themselves and that I did not want to be involved with any percent survivals or any numbers anymore.

I am a numbers girl, at heart. Don't get me wrong. I love math and I loved my jobs that involved data management. Michael runs a company that does data management. We are a data geek house, yet when it comes to your own life...when do statistics matter? The only stat that I let affect me is that as a 32 year-old woman, I had a 0.4% chance of getting this disease. Half a percent.

This half a percent helped me to make the decision not only to have a mastectomy, but a bilateral mastectomy. The percentages of local recurrence increased year over year in the breast tissue. I can not remember the specifics, but all the percentages were bigger than half a percent. So, I didn't want any of that vulnerable tissue on my body even if it meant I couldn't nurse another child and that I would lose sensation. The risk was bigger than half a percent.

This half a percent helped me make a lot of decisions. It helped me decide to get genetic testing because they told me i only had a 7% chance of having the genetic markers for breast cancer. Seven percent seems small but it is a lot higher than half a percent. I had to know for my Mom, my sister and my daughter...it turns out I have none of the known markers.

Last but not least, the half of percent is my true gauge of survival. I know many people are told their stats for survival over the five year period and certainly I was at the beginning. However, once we confirmed my initial spot on my liver as breast cancer, that jumped me to stage IV status with my cancer. So, I told my doctor never to give me a survival statistic again because anything greater than half a percent would be fine with me. I could do it because that was my stat in relation to getting this disease.

Like I said, I am a math nerd...but I don't cling to the numbers anymore when it comes to my cancer. As far as I am concerned, any number greater than half a percent is something I can and will acheive!:)

Have a great Monday!
Blessings,
Lolo

The Anatomy of Hope.

Today, I am a little bummed. Randy Pausch, the political science instructor from Carnegie Mellon who became famous for his Last Lecture, died of complications from pancreatic cancer. It is so bizarre to me that he died today and the internet already has the information. It is so quick. I know his cancer is different than mine and I know that I am doing really well, but it is hard not to feel the effects when someone great dies of your disease. Tony Snow died three weeks ago from colon cancer and now Randy Pausch. These people are great people who faced death in such a graceful fashion.

I bet you all didn't know that I do face my mortality every so often. I look it in the face and I deal with it. I respect the disease that I have, I also have a healthy fear of it. Yet, I also have hope. I have real hope based on meds and treatments and so forth. I am grateful, but that doesn't mean that other people's stories don't affect me. I process their passing as a grieving of a friend because I feel that I relate to them. It is hard to find people I can relate to in this wild cancer club, yet I look for it because it helps me cope. Their stories help me find my place in this world.

I try to view people like Randy Pausch or Tony Snow as cancer successes because they did have hope and they used their experience to help others. I can not change their diseases. If I could, I would. If I could take cancer off the face of this earth, I would figure out a way to do it. But, I understand these things are out of my control. In many respects, I am just glad I got to see a glimpse of their wisdom before their cancers over took them. I don't think they lost their battle with cancer, but, in fact, they won because it didn't affect their souls. They lived with the knowledge of what they were facing. They also lived with real hope and honest wisdom.

I have been reading this book recommended to me by a friend. It is called The Anatomy of Hope by Jerold Groopman. It has been a great book for me because it is really hard for me to describe why have hope and why I feel that it is real and tangible to me. Groopman is a physician and he takes you through his emotional evolution from being a newbie doctor to being a patient, himself. He is an oncologist. The first half of the book, he really describes these interesting experiences of people who either recovered from their disease or did not.

The ones who did recover often had a hope that was indescribable. One such situation was a colleague of his who had a terminal stomach cancer. His fellow doctors all believed he would succumb to the disease, but he didn't. Groopman met up with him years later and confessed to the fact that none of them thought he would live. The physician who was a stomach cancer patient knew that at time time, but he also felt he would survive. His wife, who was his strength, gave him hope every day. The patients Groopman highlighted who did not recover, were often situations where he felt ill-equipped to help them as a physician. He could help them with the medicines, but did not know how to give them hope in the situation. He later went through his own issues with chronic pain and that is when he really started to understand hope...that is when medicine became personal for him. That is also when he ran into a Hope Stealer.

Who are Hope Stealers? They are those people who take the wind out of your sails, or barrage you with negativity so that you can not achieve what you need to do. As a patient, I have had one or two Hope Stealer physicians and I can assure you that they have left a lasting mark on me, even though I consider myself to be mentally fit to take on this disease. I work on forgiving them, but I get angry because for whatever reason, they were so cold and aloof to me. One physician was pretty mean to me. I tried so hard, but I know I let his words sink into my skull and absorb into my brain. I breathed in that negativity and let it strip away my hope. This is because no matter how strong we are as people, I truly believe there is nothing worse than rejection from the medical expert. It is jarring and difficult to get over.

Regardless, I know that I had a part in letting that physician steal my hope. I let his words affect me. I let his actions chip away at the person that I am and that I know I can be. I would often say he made me mad because he abused his power with me and probably did with less confident patients. But, the truth is he just really attacked my ability to heal, which is a difficult thing to hear. So, I am working on forgiving and I am working being stronger in the future. I encourage each of you to recognize that you have a role in this process, too. When hope-stealers come your way and confuse, try to remember that things aren't always what they seem. Maybe their confidence is a cover for insecurity. Who knows why people do such mean things sometimes, but I always try to remember that it is not really about me. It is about them. I am just in the way at that moment. That is all.

Like I have said, I am a fan of thinking that life is good and that people are good. Ultimately, I will trust people until they prove me otherwise and I believe this optimism is a good thing. I have many lovely people in my life who are amazing and honest and good. I know that the Hope-Stealers are few and far between, but somehow we let them affect us more than the goodness that surrounds us. Or at least this has happened to me at times. So, this is one of the things I work on...constantly.

Groopman's book is great because at the beginning he reminds me of some doctors I have met that I didn't sync with. But then he evolves and a doctor rejects him, tells him that there is nothing they can do for his chronic pain. The doctor was an expert in his field so he believed him. Who wouldn't? Slowly, but surely, Groopman found his way to positive people who would help him heal. He fought very hard to get there, but he is now pain-free and overcome what some physicians would say is impossible. Healing from a chronic condition takes time, but it can happen.

I have really learned the hard way that when someone tries to steal your hope, they are just not the right situation or person for you. If a friend, a physician...whoever, doesn't support you when you are doing and believing good things and creating positive karma for this world, then it is okay to question whether they belong in your life. And, rarely, they may be someone that you need in your life for a while...like a physician or someone at work...so you may have to accept them without accepting their perception of you. This is not an easy thing.

That is why I am working on forgiveness and realigning my expectations with what is reasonable. Groopman's book has been a good tool to affirm whatever I already know...that my perspective is built on real hope with solid information that I am healing. If any of you ever want to take a chance on his book, I believe you won't be disappointed. His awareness of the biology of hope (explaining the mind-body connection) and the role of fatigue in chronic conditions is extremely enlightening. I truly appreciate and understand his perspective and evolution from doctor to caring physician.

I hope I have explained this subject matter well. i am not feeling well today and it has made my brain a little scrambled. I wish each of you a wonderful weekend! I will write more tomorrow.

Blessings,
Lolo

The lymphatic system.

The lymphatic system is such a complicated subject matter. So, I am going to try to explain things as best I can while reminding you that I am not a doctor. Our bodies have a multitude of lymph nodes throughout the body. If you saw a map of the lymphatic system in the body, it would look like several branches with connective points (nodes) along the branches. The nodes collect lymph fluid from our appendages (arms, legs) and our major organs.

According to wikipedia, the lymphatic system has three major functions. 1) It removes fluid from tissues. 2) It transports and absorbs fatty acids and fats as chyle to the circulatory system (don't know what this means) 3) It produces immune cells, such as lymphocytes that fight off infection.

I would really like to focus on point 1 and point 3. Point 1 talks about the removal of fluid. With cancer treatment, doctors will often remove surrounding lymph nodes and test them to determine if the cancer has spread. In my case, they had a sophisticate test that could source the lymph nodes closest to my tumor on the left breast. Even so, they removed 5 lymph nodes, which is a small number in relation to my peers.

However, there is a risk that takes place because of this removal of any lymph nodes. The lymphatic system can become stressed because there are less nodes so when it comes to swelling of the arms, the process to bring fluid back in to tissue in the core of you body, the lymphatic system may seem more taxed. Many breast cancer survivors have to do preventive things to ward off lymphedema. This is a condition where the body has trouble removing the excess fluid from the arms and the arm that as affected becomes swollen.

So, what does this mean to me? Well, I have gone into an Occupational Therapist and done learned preventive exercises. I have not had any major lymph issues because I exercise and because I don't take any risks with my left arm. No blood pressure can be taken out of that arm and they can never take blood from that arm...so that limits some of my medical treatment. However, we have worked around it. I have a port in my right arm which the treatment meds go into...so no arms are available for blood pressure. They take blood pressure out my leg, which is funny to me. I am used to it by now.

When I have had to go into the hospital, Michael is always tenacious about making sure they put signs on the wall so that no nurse or assistant will take my blood pressure or blood from my left arm. They usually put signs up, but if they don't, he will make sure they get that done. It is important because my lymph system is already taxed from having 5 less nodes than before. Some survivors have up to or more than 17 removed.

I also got a compression sleeve that I wear at night sometimes. It helps to keep the flow of lymph fluid away from my arm. I can't wear the sleeve for long as it is pretty tight and I have the smallest size. However, I just wear it when I notice even the smallest swelling in my arm. This can be when it is hot out and we are more prone to swell. Because there is more fluid to extract from the arms, it takes longer for it to happen. So, I try to do things to help the process along...like stretching the arm and wearing the sleeve for a little.

Okay, gotta take a break. I will write more in a bit about lymph tissue and the warding off of infection factor.

Blessings,
Lolo

On the horizon...

Was going to write this post this morning, but I have run out of time. I have to go to a writer's group and learn how to be a better writer! Anyway, when I get home, I am going to write about the lymph system and why we swell. Yes, I am sure you have wondered why edema (aka swelling) happens in your body. Well, I am going to tell you about it so I can then tell you about the importance of the lymph system! FUN! FUN!

More later,
Lolo

An anniversary.

This time last year, I was in surgery. I was having my lungs operated on, with two small masses being removed and the bottom lobe of my lung excised for precautionary purposes. We just got back from Omaha and I have lots of cleaning to do, but I did just want to stop and take a moment and tell you all about this anniversary.

Though many people view surgery as a bad thing, a necessary evil. I view it as a tool for battle. Most of my surgeons have been extremely kind and thoughtful people who have pushed me forward on my pursuit of healing. This was true of my lung surgeon. Even when recuperating, he would remind me of the bike and that I needed to get up and get out of bed so that I could eventually get back on the bike. By the time I left the hospital, I was walking two miles a day around the hospital because I needed to believe I could do it.

The surgery is the source of the scene I wrote about with my daughter and me...that is the story MY THIRD LUNG. The surgery is also to be a source for at least two chapters in the book i am working on. The surgery got in the way of my bike training, but if I am looking at the big picture...it only helped me in the long run. It was a success. I skated through recovery, not because I am special, but because I believed I could do it.

Cancer has gotten in the way of my bike training this year, too, but it will not slow me down in terms of life goals. I may have to cut back on the races I wanted to be involved in because of the logistics with chemo. But, I plan to ride the bike tonight on the anniversary of my surgery and relish the fact that I can do this while on chemo. Resilience is really the theme for this journey, resilience and hope.

So, if I can ride the MS150 after this major surgery, then YOU can do whatever it is you want to do with your health. You have the power to make change. There is no difference between us in terms of capabilities. We are the same. You can overcome any obstacle and make positive things happen in your life! Believing in yourself is the first step. Just like I got out of the hospital bed and started taking those steps towards getting back on the bike....so can each of you!

Blessings,
Lolo

What you believe, you become.

So, Michael, Mo, Jack and I are in Omaha. I am sitting in our hotel room while the rest of the crew is asleep and I thought I would write a post. We are mainly here because I bought tickets for Mo and me to see the Jonas brothers tonight. If you don't have a seven-year-old, or a Hannah Montana fan in your house, then you probably don't know who these kids are. Basically, they are three pretty talented brothers who are very cute and are on tour right now. They are very busy for young kids, but it seems like their parents are pretty involved with the process and the boys are very musically talented. They were just in Camp Rock, a Disney musical, and one of the girls from that musical is opening up for them in the concert tonight.

Anyway, Michael and I made the executive decision not to take Jack to the concert as he doesn't really like to sit for long. Actually, neither do I , but I am an adult and should act like one. Regardless, we are all heading to the zoo today, then we will break off into the concert group (Mo and me) and the Plunkett boys(I think you know who they are:). Some of the interesting things that have happened along the way so far....are that we went to the Omaha Royals game yesterday. We got their faces painted and balloon art for free. It is such a fun stadium, very kid-friendly. We also went to dinner last night and swimming. We all believe that the two mega-vans that are sitting outside our hotel room are for the concert tonight. Noone can really tell us differently at this point...even if we are wrong.:) Morgan, in particular, sat at the window last night and watched for Joe Jonas to emerge all night...this is the one she is going to marry.

I did get to break away and do a little shopping last night. I went into this earthy store called The Lotus and bought a necklace that has a quote from Buddha, "What you believe, you become." I have been reading a lot about the power of positive thinking, about the medical aspects of it. Of course, if you have read this blog before, you know that I have a desire to understand things at a cellular level because that is where cancer starts to break down the body. I have been researching mind-body connection, from a scientific viewpoint. I understand the mind-body connection at a spiritual level, but no everyone is that way so I thought I would explore some new books with unique perspectives and see what I come up with. In the meantime, I got this neckace to remind me that regardless of where anyone is in their faith, or what they believe, remaining positive and believing in the good aspects of life is where things are at.

There are many things I work on besides the cancer that I forget to share. I mainly work on trying to remember that my cancer is unique, that someone else's story of death does not mean it will happen to me. Sometimes, because I have cancer, people can share these stories with me and they always upset me because I am empathetic. I don't want anyone to die from cancer, yet I try to remember that I can be sympathetic to to others while believing in my capacity to heal. Cancer does not have cooties anyway. You and I can't catch it from someone else. Our own cells grow in our own way so if we get cancer, we have our own breed of a type of cancer.

I also work on forgiveness, a lot. I didn't realize I needed to forgive people, but mostly I need to forgive myself for being such a perfectionist and expecting too much of others. My forgiveness practices are just where I meditate or write about the issue and then give it away(in my mind). I always address my role in the issue and then I give it wings to fly so it won't upset me anymore. I have to do this several times before it is gone from my mind, but it does work. I also have an inner prayer life that I don't talk about much. This is not because I am ashamed, but because I promised this blog would not be about preaching to you. I love to share my faith,but I feel right now, my burden is to share my cancer experience with you all. Any other discussion, should probably go off-line as it is not the focus of this blog. Feel free to email me about it if you have any questions. Regardless, I did want to let you know that I do have an inner prayer life and my work on my spiritual relationship with God daily. I believe this is an important aspect of my healing.

I do believe that I can address my cancer through medicine. I believe it could probably stabilize alone with just the meds, but I know I need to be mental and physically armed for battle. This includes a complete approach with some of the things I have mentioned above. I will try to remember what else I do and mention them in another post. Mainly, I just try to be fair and good and honest with myself. I am have a long way to go before I am an adult, but I am working on it while I work on my healing. All is well, life is good.

I hope you all have a wonderful Monday. We are definitely going to have a fun day in Omaha!

Blessings,
Lolo

As promised, pix of old wig.

Here is another series of pix of my old wig. I asked my hair stylist to trim the ends off. It is a real hair wig and I fried it a little by using my flat iron all the time last time I had chemo. Robin, my hairstylist, is SO good. She has cut this wig like three times and has always made it interesting. The difference between this one and the last ones I have shown is that I can use curling irons and flat irons on it. I can also using styling products on it. With fake hair, they tend to be a bit shinier, and you can only use wig products on them. You can not using any heating products on fake wigs because it will burn the hair. FUNNY.

Anyway, here it is. I always feel like making goofy faces when I take these pictures, but I don't because the purpose is to make people feel comfortable with the idea. Let me know if you all have any questions about wigs.

Bloody noses, battle scars and HOPE.

Hi friends,

Just wanted to let you know I had chemo on Thursday and am doing great. I got my dose of abraxane, which is the chemotherapy. I also got two pre-meds for nausea and Herceptin, which is my targeted drug. I take another drug orally every night, it is called Tykerb. It is a targeted drug, too.

The strangest side effect I have at this point is related to bloody noses. I forget to talk about it, but they are daily and can last up to 20 minutes. One of the meds, Tykerb, really causes this condition that most people call "crusty nose". Pretty gross. Anyway, it is like each morning I wake up with my nose filled with gunk.

And when I try to resolve my issue, I blow my nose. The bloody nose then follows. The problem is that sometimes my hemoglobin is low and I can bleed pretty easily. Of course, it becomes this vicious cycle of me needing to blow my nose more so I can breath better and my nose bleeding more. Finally, when I can stop blowing, the bloody nose will continue for a while.

This process is an absolute mess. The only reason I am really telling you any of this is because I think it is kind of funny and makes me very human. Often, I write about overcoming fear with the HOPE that I have. I know my mindset and all that I have been through can make me seem a bit super-human. I am not at all. Whatever power I have in me to heal, so do you! We are all made of the same stuff.

I also know that my cancer can make me seem different from most people. I am not sure if it is a fear of me or a fear for me that I see in people's eyes sometimes. Regardless, I know most people are afraid of cancer. I don't blame them. I was afraid of it, too. At times, I am still scared. I try to transition that to respect of the disease, but sometimes it is still just fear. I wouldn't wish this thing on anyone, but I sure have learned a lot of wonderful things through this process. Most of the awareness has helped me to know myself better, to accept my own voice in this world.

I was talking to two of my favorite survivors this week and both of them uttered the same point to me. They are both strong, resilient and believe in their abilities to heal. They both, at times, fear the disease and get scared. But they both said to me that "Death is not an option." When I truly think about this, it angers me that we young girls have to face our mortality in this way. Yet, I feel the same way as they do. Life is the only option. I have people who rely on me and I am fortunate enough to have them.

I have a truly supportive husband and two wonderful kids. I am just starting to come into my own as a writer and an athlete. Cancer is a part of my daily life. We are still working towards stabilizing my disease. I imagine we will get there soon, but that we will always deal with this disease. It will ebb and flow until most of the cancer cells are dead. I don't seek out some dream state where there is no more disease. I do believe I will have complete stability over the cancer, at some point, but it might not look perfect. In fact, I am sure it won't be pretty. I have scars all over me already. My stability could mean there will be tumors in my body, but they just aren't growing. It could mean they are made of dead tissue or are indolent. I don't know and I try not to worry about the small steps in the journey. They don't matter as much as the overall goal.

Whatever the case, the battle scars will be there. They already are...and I am totally okay with them, even a little proud of them.:) Okay, gotta take Mo to Wal-mart so we can get some Jonas Brother's stuff for the concert we are going to on Monday. Yes! Mo and I are going to the Jonas Brothers concert...pretty fun. I have a kick-butt plaid fedora hat that I am hoping she will let me wear...we will see. Life is really good, even for those of us on chemo!

Blessings,
Lolo

A legitimate writer, featured in REDBOOK!

So here is a picture of me with a check for my FIRST published story. I won first-runner up in this contest and am going to have my picture, name and a snippet of the story featured in the October 2008 Redbook. Yes, THE REDBOOK! So cool. The contest was for a publication in a book, called a Cup of Comfort for Breast Cancer Survivors. Then Redbook hooked into the contest and decided to feature the winner's story, in full, and the three runner's up in the way I mentioned above. I really can't believe it. I keep forgetting to tell people because I really can't believe it. So if you have gotten a random email from me about the contest win, it is because it came to my mind at that moment and I had to share.

For years I have known I would write stories. I have always talked about it, but I thought I would write fiction. But, cancer got in the way and I took an early retirement from working and my need to write my story took over. I don't have much time during the summer to write because I am so focused on the kids, but my plan is to have my book fully outlined in the Fall so I can start submitting to publishers when the Redbook and the Cup of Comfort book comes out.

Michael and I are going to scan this check and frame it. Writing helps me to make sense of this cancer journey, it helps me to help other people and pass on what I know. I am sure it helps me more than any of you, but that is just the way it works. Giving is a gift, in and of itself.

I will remind you all about the Redbook, and the COC book as we get closer to publication. I would be honored if an of you read my story...or bought the Redbook when it comes out! (It is called MY THIRD LUNG and it is a story of Morgan and me in my recovery from lung surgery. It is from her eyes.)

Blessings,
Lolo

The goofiest wig ever!

This must be the goofiest wig I have ever purchased. I bought it because it fits on a headband that goes under a do rag or hat. I look even sillier in baseball hats so the do-rag is the option. Michael thought this was cute, but I am not so sure...that is why I took a goofy picture. I took it into my hairstylist to see if she would cut it short, like shoulder length...but, she didn't want to cut it any shorter than this. The hair is pretty thin so she was worried it would do some funky flipping. Not sure that I can work out in this Bret Michael"s ROCK OF LOVE mess of a wig. I feel like I am stuck in 1986, getting ready to go to a Poison concert that my parents would never let me go to when I was in highschool. Oh well.

Just thought I would let you all know I don't take myself too seriously all of the time.

Blessings,
Lolo

I am an athlete.

Thanks to so many of you, I have reached my goal for the Komen 3-day walk...which is $2,200. Wow! Komen is so focused on the CURE for cancer now, they are being so bold with their approach. They donate a lot of their money to research. Only 15% of money donated goes to admin costs, which is impressive.

I am still working on getting an approved letter from my physician or nurse regarding me being able to do the walk. Because of my chemo, the coaches for the walk would like me to get this approval so that a physician is comfortable with my choice. My determination is strong, as always. I do plan on being kind to myself and not walking the whole twenty miles each day. I will have had to do chemo on the Thursday before the walk starts on Friday...so anything I can do, will be a great accomplishment.

I have some preliminary goals, but I will just be happy to be there with my sister and one of her good friends from high school. (My sis and her friend are the type of people I want to be when I grow up, gracious and kind and giving and strong and athletic...you get my point. I always admired them growing up so it is really sweet to me that they have raised so much money for our team, for a cause that is so personal to me. Heather's friend has raised the most money of all of us and graciously spread it among the team. It is her good karma and positive attitude that has helped my cause so much! I will forever be grateful to her for being such a good person.)

I am also raising money for the Young Survival Coalition, a branch of the American Cancer Society that focuses on providing a mechanism or young survivors like myself to come together and fight. Once again, like with Komen, I am the exact type of person they appeal to...a young survivor who should have never gotten this disease. They have a bike ride from Hershey, PA to NYC in October. Such a pretty area. I am not sure to what extent I will be able to do all of the ride, but I have been excited about it since I registered. I did register before I started chemotherapy, and I have doubted my ability along the way...but the ride is important to me. The cause is my very own....and it involves riding a bike, which is a sport that has saved me over and over.

I am going to try to think of some creative fundraisers for that, like maybe t-shirts with the Pass It On and YSC logo. I am a t-shirt girl so I LUV getting a t-shirt. I am working with a vendor now to get the specifics nailed down. I want to make shirts that will appeal to men, women and kids so I am thinking through that. I would have kid's sizes too because I always want to get shirts for my kids when I raise $$ for a cause and I hate to have them in gargantuan adult shirts.

I rode my bike last night. It was a beautiful experience. I hadn't ridden it for over a month. It had a cob web on it, which might normally make me sad. To be honest, which is what I try to do, It did make me sad for a second, but then, I remembered that my energy is doing so great that I can ride my bike on a hard chemotherapy and two targeted cancer drugs. Who am I to complain? I should always be grateful so I will keep working toward that goal.

Once I got on the bike, it was easy to be thankful. As I coasted down the hills and worked my way back up the hills, I started to remember who I am. I am a fighter. I am determined. I am grateful and compassionate and empathetic. I am an athlete. I can endure this battle with cancer because I just can. And, I am happy at all if my sharing it with just one of you will make a difference...that it might help you to remember your health and take it seriously.

I am a guinea pig in some respects, this blog makes me a naked one at that. I am the girl whose cancer probably would have taken her life twenty five years ago...like Susan G. Komen. Yet, that was never a part of my story. Even when I have felt lost, I have always had the right answer for the next medicine or the right doctor. I have always felt the nudge to make a certain decision. There has always been hope. I have learned to never let anyone steal that from me again. There are Hope-Stealers everywhere so don't let them get to you either.

Thanks for any support you give me, including reading the blog and just believing in me. That matters just as much, maybe more, than monetary donations.

Blessings,
Lolo

Running the bases!

Michael and I went to the Kansas City Royals game yesterday with Morgan and Jack. It was an end of the t-ball season event. It was a lot of fun. Though my energy is sporadic at time, this weekend was so much better. I did chemotherapy on Friday and they took one of the meds off of my treatment. It made all the difference in the world. This weekend was a bit of a dream in comparison to past chemo weekends. I am not working out yet, but my plan is to ramp up to working out by next week. I am going to try to ride my bike a couple of times this week and see how I do.

Anyway, we went to the game late and stayed late to run the bases at Kauffman Stadium. I have been going to this baseball field my whole life. I even remember the first game we went to...I got confused because I was about six. I thought we just drove up to this game and it was going on. I had no idea we bought tickets and planned to go. I remember asking my mom and dad lots of questions. I was a t-ball player so I was getting used to the rules of baseball, but I didn't know why we were there at that game watching that team. I didn't know WHY we were Royal's fans instead of fans for some other team.

By the end of the game, I figured it all out. I left with a lot of knowledge, a baseball cap, and a sunburn. My poor Mom and Dad had to answer all those questions. I know their pain because my kids ask lots of questions now. I guess inquisitive parents have inquisitive children.

The line for running the bases was SOOOO long yesterday, but we had talked it up so much to the kids that we had to do it. Michael and I joked about bribing them out of line, like getting them ice cream or something. But, I must admit, running the bases was an awesome experience. Mo and Jack raced Michael around the field and I briskly walked the bases. I made sure to touch each base. Home plate was missing, but the rest were there. The field was extremely impressive. We took a picture with the four of us.

I realize that most people might think this experience is commonplace, that it is something they could do anytime. Maybe it is because of my cancer or maybe it is because I am a writer, but I get sentimental these days. Though the line was long and it was hot, the experience was worth it all. As I hit third base, I was thinking what it would be like to be a player, to be on this field or a field most days. I am sure it gets easy to take it for granted, it is just the way we are made. But living your dream is a spectacular experience. I am just starting to figure this out.

But, Morgan asked me to pinch her before we hit the field because she wanted to make sure she wasn't dreaming...then I asked her to pinch me back. We laughed. What a sweet kid to know it is a privilege to have that experience. I know this post is sappy, but I get to be sentimental because I am bald. :) I hope that each of you have pinch-me moments this week.

Blessings,
Lolo

New Logo

This is my new breast cancer logo. There will be variations of this logo and wording on my web site (in progress), mailing, t-shirts, etc. I am working on the fall mailing campaign right now. Please be sure to email me your address at loloplunkett@gmail.com. You don't need to personally know me to get the mailing. You don't even need to explain that you read the blog, but you don't know me. Just send me your address and addresses of friends, family, etc. If you send me your home address, I will keep it secure and I will mail you an awareness packet in October. You can keep it or give it away to someone you love. Like the blog, it is extremely personal...a gift from me to you! Please consider it.

Blessings,
Lolo

Chemo (2 of 2)

So, in the last post (below), I was going to talk about a day in the life with a chemo patient so that you all could get a feel for what my weekends are like while on chemo. However, me being trained as a journalist, I can't help but give you the backstory first. I wrote about all the meds I am on and why. This post will talk about the actual chemo day and how it affects my family and me.


Yesterday, my appointment was at 8:45am. I took Morgan over to my sisters at 8am. Jack was going with Michael for a dentist appointment. Then my mom and dad met me at my sisters and mom goes to chemotherapy with me so that we can talk about Pass It On or writing stories.

When I get there, I check in and they weigh me. They take my blood pressure through my leg. This is because my left arm had lymph nodes taken out. If they do blood pressure through that arm, it could cause stress to the arm and make it swell. They take my temp and do my blood work. They access my port in my arm to get my blood counts. They send the vials to the lab and it comes back with a complete blood count(cbc).

If my white blood cell counts or red blood cell counts are outside normal parameters, then the oncologist will determine whether I can go ahead and do chemo. They might tweak my counts by giving my neupogen for white blood cell count increase. This would allow my WBC to increase at the same time that chemo is depleting my wbc. Crazy. There are also meds for red blood cell increase, but those can sometimes grow the cancer at the same time so the docs try not to use those.

Once I am cleared for chemo, the pharmacist can start to make my medicine. I first get Herceptin, which is my maintenance med. Then I get some meds for nausea, which makes me sleepy. Then I get abraxane. By the time I get abraxane, I am pretty sleepy. The drowsiness wears off and either my mom or I drive home.

When I get home, if Michael is not already at the treatment with me, he usually meets me at home so he can watch the kids because I am drowsy still. I usually go to sleep for a while, then I wake up in an altered state. Last night, I woke up at 7:30pm and thought it was morning. The drugs are so powerful, it is really hard not to be a little confused.

Besides hair loss, some of other long-term side effects are peripheral neuropathy(finger and toe tingles), flaky finger nails, excessive dry mouth or mouth sores due to lack of saliva. Nausea or diarrhea can be an immediate side effect. It really depends on the medicine. Like I have said before, chemotherapy is a term used for a lot of medicines...not just one medicine.

Usually, I sleep a lot over the weekend. Mornings are the hardest, then by midday or afternoon I feel better. If I think of anything else, I will let you know...but please ask questions.

Blessings,
Lolo

Chemo (1 of 2)

I thought I would explain a little bit about what chemo is like. Above is a picture that our friend, Phil, took of me one time while I was at a maintenance med infusion. Regardless of if I do "chemo", I usually always have doctors appointments on Thursdays or Fridays for infusions of some meds. That is just the way my life is and I don't mind. The medicine is a privilege that other aggressive cancers do not have. I am fortunate.

Anyway, they infuse the med into a port-a-catheter in my right arm. The shortened version of the name is "port". My port is in my arm while most BC survivors have ports in their chest. Mine is in the arm because my surgical team had difficulty getting the port attached to a major vein in my chest. No biggie, though. The arm makes it a little more convenient and accessible. Yet, the port can be finicky, but it is better than trying to access a vein directly with chemo.

The main reason for the port is that it streamlines the process of getting the chemo into the vein. With regular vein access, chemotherapy can sometimes burn the veins when going in. Once the needle is in the port, there is no pain for the infusion of chemo. A lot of times with any cancer surgery, some lymph nodes have been removed and access to one side of the body may be compromised because of this (more on lymph nodes in another post).

My chemotherapy that I am currently on is Abraxane. I was on Gemzar as well, but Gemzar is just as hard-hitting as Abraxane but causes quite a bit of the harsh side effects. it was causing me to have extreme fatigue, my platelets were low and my red blood cells were low. Two weeks ago, the fatigue hit so harshly that I just slept most of the week. We had decided to strip off gemzar once we saw progress on the scans.

The reason we kept abraxane is because it is a member of a drug family called Taxanes. I have had other Taxane drugs and have responded well to them, meaning my cancer has retreated while I was on them. My doc and I feel that our good response that was shown on the scans is mainly due to the abraxane over gemzar. According to abraxane.com, the drug actually delivers a form of Paclitaxel to the cell to slow tumor growth or halt it. Paclitaxel is a potent anti-cancer agent that is evident in cancer drugs such as Taxol, Taxotere and Abraxane.

I would like to tell you what Abraxane does at the actual cellular level, but the web site is not really clear on this. It just says it interferes with cellular production, which is good. I might make a list of the common breast cancer drugs if you all would think that would be helpful. Please always feel free to ask me questions either via the blog comments or my email address listed at the top of the page (loloplunkett@gmail.com)

Herceptin is another drug I take...it is a maintenance drug, yet a wonder-drug. Herceptin is the drug that has changed the story for girls like me, it is has literally saved so many women's lives. When a woman gets breast cancer, it can be fueled by a protein called her-2-neu. These cancers are deemed the most aggressive of breast cancer. Yet because of Herceptin, my cancer is more treatable.

Tykerb is another drug that attacks the her-2-neu cancerous cells. It also attacks her-1 cells. The problem with cancer is that the DNA can evolve. Technically, there are her1, her2, her3 and her4 cells that can grow on breast cancer cells and help the cells to grow and divide quickly. Her2 is the most aggressive or more well-known of these cells. Yet, the cancer can evolve to use her1 or her3 or her4. With someone like myself, who has had growth while on Herceptin, it is believed that my DNA has probably done this very thing. I believe this.

However, Tykerb and Herceptin are believed to be synergistic and work well to abolish growth. I am on both of these and they are working. Also, on the horizon is a drug called Pertuzimab (label name not known). It goes after her1 through h4. I believe I will be on this drug at some point and that is when my cancer will finally stabilize for good. I believe I will be stable before then, sometime this year. I believe these drugs could shrink my cancer to oblivion and strike its potency.

I am a lucky girl to have cancer at this time in the evolution of drugs. That is why I truly believe in my healing. I know there has always been another drug or procedure to guide me to my next step. And, although I am in the middle of a battle, my faith guides my every step. Don't get me wrong, I use my brain too...but that is just one of the tools in my arsenal.

I am forever-indebted to the people who came before me and decided to make these drugs. I plan on making sure to mention all of this in my book so people understand the relevance of all this hard work. Like i said, Herceptin and other drugs have changed my story from one of early death to a long life ahead of me. This is true for many other young women I know. WOW!

Blessings,
Lolo

Funny things about losing hair!

Here are Mo, Jack and me at home. I took this picture the other day before I went to a support group meeting for young cancer survivors. At the meeting, we were talking to a newbie about what happens when you lose your hair. There are some really funny things you don't realize so I thought I would share some of those things.

The first is the order of things. Now if you are faint of heart...STOP READING RIGHT HERE.:) However, this is how things go...you usually notice hair loss in the pubic area first. Then you lose hair on your head, hair on your legs, extraneous facial hair, eyelashes, eyebrows and NOSE HAIR!

Now everyone is different so not everyone loses hair in this order...this is just kind of the standard. Not every chemo makes you lose hair and not all people lose all hair in all of these places. This is just the average way things go. Once you lose hair on the head, it gets easier to accept. The actual shedding is the worst for most people. That is when it is depressing and can hurt. Once it is gone, you get used to the baldness. My hair is actually starting to grow back in. I have little blonde hairs all over my head. Such a crack up! I won't be able to wear it like normal hair for a couple of months.

Losing eyebrows and eyelashes can feel like another setback because you can hide behind wigs, but it is more of a challenge to wear false eyelashes or draw in brows. The docs actually don't want us to wear fake lashes as it can cause infection. I don't mess with it because I am lazy, but I will start to draw my brows in soon as long as I can make it look natural. I got some brow templates and brown eyeshadow. It makes it easy because I am a tomboy and don't like to wear a lot of makeup in the summer.

The nose hair is the funniest thing. I realized this one day when I was in a meeting at work a couple of years ago. The nose hairs are the last to go so you don't even realize they are going, but you will start to get it when snot runs out of your nose because there are no hairs to stop that process. So, if you cry or if you have a runny nose in general, you will start to feel like a toddler who always needs to have their nose wiped. I always carried a kleenex around and I would make jokes about being offensive. I would tell people that they just needed to forgive me if snot ran out of my nose because I didn't mean it. I just always try to make people feel okay with my disease. No nose hair is kind of a funny thing if you think about it.

Okay, we got a new refrigerator and I have to go load the food! Will write more later.

Blessings,
Lolo

Things I wish I knew before...

Before I got cancer, I thought a cancer diagnosis was a death sentence. I thought any cancer in the body was a horrid concept, maybe even untreatable. I thought lymph node involvement always meant a recurrence would happen and I thought any tumor on a major organ meant the cancer was everywhere in the body and that your days were numbered.

I was wrong about all of these things. I was ignorant; I had little to no knowledge in relation to cancer and I had very little experience with it. I let my fear outweigh my ability to educate myself. I thought avoidance meant I wouldn't get the disease. I stood under the umbrella labeled "NO FAMILY HISTORY", thinking this would protect me. I didn't know that early detection actually does save lives. I didn't know that medicines can keep cancer stable, whether local to a specific area or on a major organ.

My cancer is breast cancer. This type of cancer flocks to the liver, lungs, brain or bones if it chooses to travel. The size of the original tumor may or may not have anything to do with recurrence. My breast tumor was small, it was thought it wouldn't be anywhere else in the body until we got full body scans. Yet, it was sitting on the liver when we found it...at the earliest point possible for a young women, which is through self-exam.

I have one large tumor in my liver and some smaller ones. I have one small tumor on my left lung. I could tell you the size of the tumors and or the amount of other tumors on my liver, but I am not sure it would be that relevant. It doesn't matter to me. Progress on the medicines is all that matters to me and we are getting that. I have had the knowledge that the cancer moved to those organs for a long time. Beyond that basic information, anything extraneous details can create negativity in my world. I choose to protect my mind and know that I am healing. My full body scans give me every indication that this is happening.

I have known I was stage IV since very early on in this process, but I have never considered myself terminal. I consider myself chronic, like diabetes or arthritis or asthma. There are waves of outbreaks and remission. Right now, my medicines are striking the cancer's power and taking its vitality, which is far more important than this size of the tumor. Growth is a relevant factor, but a more important issue is the aggressiveness of disease. I plan on dying from anything other than cancer..at a very old age. I think this will happen. I visualize it every day.

I call it "my disease" or "my cancer" because I claim it. It is mine and no one elses. Other people may have breas cancer, but every person's cancer is unique...my wise breast surgeon told me that long ago. I take the wind out of its sails by owning the disease. I did not choose to get it and I am not sure that there will be a cure for cancer. I don't have enough medical education to give a verdict on that issue. I think there will be vaccinations for some cancers and I think there will be medicines that will halt growth of some types of cancers. The nature of cancer is that it is cell division that has gone awry and multiplied out of control. I am not sure how medicines can prevent this chaos, but that doesn't mean there won't be a cure in the future. I do think there are ways for us to treat our immune systems better so that cancer may not happen to begin with...but this is all amateur theory based on my own personal research.

For now, I do stand on the fact that medicines can control my cancer. That is where my power is, where my stability will win out over my disease. Positivity and knowledge are thrown in the mix as well. I am running a marathon, not a sprint so I do not get weary by the setbacks anymore. I am waiting patiently and doing my part to heal my body, mind and spirit. I encourage each of you to look at your own health histories within your families and take charge of your health, if you have not already done so. Health issues will not be kept at bay by ignoring them. Avoidance only limits treatment options, but awareness can save a life! It has saved me over and over. There is no telling where my disease would be if I had not done self exams or pushed for good doctors. It has made all the difference in my world. I hope it can make a difference in yours.

Blessings,
Lolo

Living with cancer

Today, Morgan, Jack and I got a lot of things done. We went to the store and then took my nephew to the pool with us. We had a great afternoon. Then, I took all three kids to tae kwon do. They are getting ready for testing for belts. The first belt is an orange belt. Jack will test on Thursday and Morgan will test on Monday.

Part of the reason we do tae kwon do is to build confidence. The world is filled with various tests and life lessons that the kids have to endure. Formalized schooling requires so much of the kids. I think they enjoy these boundaries, the gentle nudge that testing provides is to remind them that they are capable. They are able to do what is asked. My kids are quiet and have difficulty speaking directly to adults. I want them to be confident, but not cocky.

I know this will be a gentle balance as they get more confident and start making progress in their belts, but I do appreciate how tae kwon do teaches respect of peers. The kids are expected to honor other kids before themselves. If they have a belt higher than another child, they are expected to willingly help others. They are expected to do good.

I am pleased that the kids are enjoying martial arts. Of course, it is their choice to take the classes. I am just glad that I have found a discipline they seem to enjoy that also reinforces the values of our family. We try to put an emphasis on public service, on doing good with your talents and living a purposeful life. We don't always get it right, but we just keep trying.

Some days I get to be the mom I want to be and live with cancer without letting it affect my ability to help my kids. Today was one of those days.

Blessings,
Lolo

Another apology...

I know there are some grammatical errors in the post below, but I got tired of editing it, as before. So please forgive and have an excellent Sunday.

Lolo

Getting stronger.

Today was the first Sunday since I started this chemotherapy that I have attended church. Church and my faith are very important to me, but it has been so difficult to have the energy to go on a Saturday night or a Sunday right after chemo on Friday. However, since we have made some med changes, I have felt stronger and stronger every day. I am not ready to go out and run or ride the bike, but I had a lot of energy yesterday to do many things around the house.

The last time I was in the Church common area, I was getting the Vacation Bible Classroom ready with my co-teachers. I got so sick that week, I wasn't able to teach. However, getting the classroom ready made me feel good. I would love to be a teacher. I am not sure it is on the agenda of things for me to do in life, but when I get to be involved with decorating a classroom...it always makes me feel special.

There was a lot of running up and down stairs while we got the classroom ready. Each time I took the stairs, I would feel weak or dizzy or winded. It was horrible. I tried to hide it around my co-teachers. I always try to hide the effects of the medicine if it is causing me problems. It is just pride and it just gets in the way and I am not happy to admit that I am prideful. I was also dehydrated. It was just a bad day because my meds were going a little haywire. I accept that there are bad days in this process, but I just don't like to share the negative very much. I want to be the ray of sunshine or hope for people...even that sounds arrogant and prideful, but I work on my intentions so they will always be pure. I am only human, though.

Today, when I went up the stairs to the church, I did not feel dizzy or disoriented. I was a little winded, but this is because exercise has been hard for me to do while on this chemo. I felt the walk up the stairs was a victory because I didn't feel each step as before. I didn't feel like stopping and bending over. Instead, I glided over the steps, cautiously yet optimistically keeping my eyes on the prize at the top of the stairs.

It is amazing to see with these eyes, with the perspective that life is such a privilege. It truly is, though. Walking up and down the stairs, being able to eat good food..these are all common things, but they are privileges that some people don't have. I am thankful that my eyes have been opened, that I am more compassionate to those who are different because I too feel different from the world. People always used to say that cliche saying "Well, you always have your health" as a form of consolation when you don't get "things" in life. But, what happens when you DON'T have your health? I can tell you that I just keep looking inside of me to find more strength and it is there. I keep thinking I might be at the brink of what the meds can do, but then I respond. I try to always live with hope and see the silver lining. More importantly, I don't let anyone steal my hope anymore. It is not theirs to take.

It is hard to live every day never taking anything for granted, but I try to approach each situation with that mindset. That nothing is giving to us and that most things we love, we must actively give away and hope it will come back to us. The people we truly care about, we do not own and at the end of the day, all of us are alone. This does not make me feel lonely as much as it used to, instead I feel empowered to know that the people in my life are actively making a choice to be around. We all have choices with how we spend our time and live our lives. I just want my life to be productive and honest and genuine. I will keep working on it. I will keep working on getting stronger, too. Progress is good.

The picture is of me with my wig and a funky hat I wore too church. I have always muted my style a little for fear that people would really know how crazy or eccentric I am. Since I have been stripped of all that is "normal", I do not worry about this as much. I am continuing to push myself to be the original me that God made. I was privileged to be able to go to church today and bound up the stairs with enthusiasm. I am thankful to see with these new eyes.

Have a wonderful and healthy day!

Blessings,
Lolo

Fierce and Fabulous 4th of July!

Happy 4th of July! I took these fierce pictures of Mo and Jack a couple of months ago when we were playing at the City Park in Leawood. We will head there tonight for fireworks and fun with family. I am feeling a lot better, which is such a blessing. I have done a lot of computer admin work today so that I could feel that I was accomplishing something, yet I wasn't being overly active. Have to save up energy for my beautiful kiddos and Michael!

I hope each of you are celebrating the 4th in FUN and FABULOUS way!

With love,
Lolo

Low blood counts...what does this mean?

I got my complete blood count (CBC) today, which confirmed that all of my blood counts were low. I get my blood counts every week when I go into treatment and good or bad...I comb over the counts to understand everything. I thought I would explain a little bit of this science on the blog so you can know why people get infections or have low energy on chemotherapy. Now, remember I am not a doctor or a nurse. This is just amateur information sharing, yet i think it is important.

First of all, when doctors take a CBC, they are looking at a variety of things. However, the main points we will talk about are the importance of white blood cells and red blood cells. White blood cells help the immune system to fight infection. Red blood cell (RBC) count information includes platelets, hematocrit and RBCs. RBCs oxygenate the body and give us energy.

Chemotherapy is a term that represents a variety of drugs. Each drug attacks cancer cells in a unique fashion, but the commonality among chemo is that it goes after fast growing cells. These are the cells in our body that grow and divide quickly. Cancer grows quickly, but so do white blood cells and red blood cells. If a drug is deemed a chemo, it means that it does not have the ability to go after cancer cells without destroying good cells along the way. What the doctors try to figure out is how a patient's cells will respond to a chemo without destroying the rest of the body along the way.

Each chemo also has unique side effects based on the way they attack the cancer. It is important to know the name of your chemo and what it does at the cellular level. Sometimes this information can overwhelm patients. I have met people who don't know the name of the drugs they are on and I don't fault them. I understand it can be frightening, but for me...awareness is critical for my mind over matter fight. Also, I want to be a part of the decisions so understanding a medicine's benefit, even at a basic level, can help.

For me, this past week, my energy has been extremely low. I was fatigued, felt weak, dizzy, etc. It was not fun. I am starting to pull out of it, but am not there yet. When I looked at my counts, I could tell that they matched my feelings of being sick. This doesn't always happen. Sometimes your counts can be low and you don't know it, yet my body is pretty sensitive and I usually FEEL bad when my counts are super low. My platelets, hematocrit and red blood cells were all low. My white blood cells were low, but were not as concerning as the RBC information. The big thing for me right now is restoring my energy and restoring some strength.

We have decided to make some medicine changes to help with my RBC deficiency. Even with cancer, it is all about balance of life. I am continually thankful that I not only have a great doctor, but I have one who accepts me as part of the team. I do have difficulty admitting when I feel weak or sick so I brought Michael along to keep me honest today. I always want to act tough, like I can take every medicine they give me. However, sometimes the strong ones are the ones who can actually admit they are weak. So I am working on letting my walls down and admitting when I don't feel good so I can get the best care possible.

I am always learning and being humbled by this process. But, I know what my body can do and I know I will be back on my feet in no time. I am excited about the changes we are making and know they are right for my healing. Will keep you all posted, but for now I will nap.:)

Blessings,
Lolo

Feeling better.

Wow. What a crazy week. I am finally feeling a bit normal today, which is nice. I almost wrote yesterday, but I just wanted to rest. Every time I would get close to the computer, I would just get exhausted. I wasn't sure what to post about because i always try to remain so positive, but then I thought I could just tell you all a little about the chemotherapy and why it is having this effect on me. I can still stay positive in thought while explaining the harshness of chemo.

Fatigue is one of the side effects that is difficult to assess over time. Many of the side effects will come and go, depending on treatment schedule..yet fatigue sets in and builds. It is sort of bizarre, the type of fatigue that you feel in your bones. It is a weariness that is strange to me because I am usually so full of energy and ready to do anything. But, I am learning a lot through this season of rest and healing.

I am not sure why fatigue builds, but it does. My oncology nurse even explained it to me in that way, that fatigue is one of the hard symptoms to fight because the body is working so hard over time. Sometimes, I feel bad for my little body. It is overwhelmed, not sure what to do. In theory, the cancer became a friendly entity to my body so my natural killer cells did not try to fight it off...or did try, but had a hard time doing it.

Now we are barraging me with all these meds to ignite the fight my body should have initiated. I am hoping that my immune system is figuring things out and starting to pitch in, but it may be too confused right now. Regardless, these medicines are helping me a lot. The scan results were great, yet cancer still lives within me. The truth is that I could probably live way into my nineties with cancerous tumors in me...as long as they didn't grow.

The two things the doctors look for on the scans are growth and the level of SUV on the scans. The SUV is difficult to explain, but essentially the more glucose solution a tumor absorbs...the more ferocious the growth. They have cut my SUV in half with this chemo which is amazing and probably the most important thing. It is like taking the venom out of a snake. The less ferocious or aggressive the cancer, the lesser chance it will have to continue to overtake my immune system over time.

I should say that I think my immune system did a pretty good job before I got diagnosed. I was tired all of the time, but once I got diagnosed it explained so much about my fatigue. My body was fighting on its own without any meds and kept the cancer to small tumors. Regardless, cancer cells grow and divide more quickly in young women. It is just the way our bodies work. Everything moves more quickly more quickly for the young. (I have never prayed more for a slowing metabolism.:)

I will go in for Herceptin today. It is just a maintenance drug and it causes some mild fevers for me, but I can take Motrin for the fever. It will be nice to have a break from the chemo this week. I know I am winning the fight, but this is also a long journey that I have to condition myself for. I have more chemo to come, but for now I will just let my body heal as best I can...and work on acceptance of my short-term limitations. I am in this life for the long haul and sometimes there are bumps in the road.

Have a wonderful 4th of July!

Blessings,
Lolo

Not feeling well today.

I am not feeling very well today. I don't really want to go through the details because I don't care for being negative. It looks like the fatigue from the chemotherapy is starting to catch up with me. There is not a lot that can be done except resting so that is what I will do. I do hope each of you have a wonderful day. I will write again tomorrow or the next day when I am feeling better.

Blessings,
Lolo