Breast Cancer Does Effect Women of ALL Ages

Us younger women are lulled into what I would say is a false sense of security when it comes to breast cancer. (Mistake #1) If we don't even have to consider getting a mammogram until we are 40 years old, the odds of getting breast cancer must be extremely small when you are younger then 40. And yes, that is true, the odd are very small, but you still have the possibility. And if you are like me, your odds of getting breast cancer are 100%, and really those are the odds that truly matter... your own personal odds.

One of our main tools for detecting the early stages of breast cancer as young women is the monthly self breast exams, but in all seriousness, how many of us actually do it monthly? I never did. (Mistake #2) I was the check in the shower if I had a spare minute every once in a great while kind of girl. Thankfully, I believe I did find my lump right away because I happened to find a spare minute in the shower when my youngest baby was about 4 months old. But then I made another mistake. (Mistake #3) Instead of running straight to the doctor, I decided that there was no way I could have breast cancer because I was too young, the Internet said my symptoms were not like breast cancer, and frankly, I was way too busy to deal with cancer. I should have just drawn a large, bright red "D" (in the most fashionable shade of lipstick, of course) on my forehead to stand for "Dumb" or "Denial" or both. But beating oneself up does no good, so I will stop.

What I'm not going to stop is trying to get the word out to other young women that A) younger women can and do get breast cancer. And when a younger woman gets breast cancer the odds are that cancer is more aggressive and nasty and is going to try harder to kill us then our counterparts breast cancer. As far as I know, doctors don't really know for sure why this is but younger women's breast cancer is nastier. Which leads me to B) DO YOUR MONTHLY SELF BREAST EXAM. And do it religiously. If you don't know how to do a breast exam, ask your doctor. They should show you how and/or give you literature to explain it to you. This is your most powerful tool in detecting cancer early, so use it ladies! And C) if you find a lump, don't run to the computer and research it on WebMD or Mayo Clinic's website, or any other site. My symptoms all pointed to the facts (obtained via online research) that I didn't have breast cancer, but I did! Instead, spend your time much more wisely, and make an appointment with your doctor who has the knowledge to help you figure out if you should or shouldn't worry about your breast lump. Learn from all my mistakes!

I also want to impress on you younger ladies that there are some doctors out there that may blow you off because you are so young. From my understanding, the only real way to confirm whether a lump is cancerous or not is a biopsy. Mammograms and Ultrasounds can tell doctors if there is reason to do a biopsy. But I have yet to hear of or meet a doctor who can tell just by feeling a lump in the breast if it is cancerous or not. So insist on further testing until you are satisfied that cancer has been diagnostically ruled out. You may have to push your doctor a little or a lot, or even go see a different doctor (or ask for a referral to a breast center) until you feel the doctor is concerned enough to prove to you thru medical testing that you shouldn't be concerned.

October Update

Things are going relatively smoothly here, which is good. We seem to be adjusted to fall routines and all that entails. The kids are closing in on the end of their first quarter at school and we all have enjoyed our beautiful fall weather here.

On the medical front, not much has changed, which is also good. I go for herceptin treatment every three weeks, see my oncologist's nurse practitioner once a month and have my tissue expanders expanded every so often. So I am averaging about four doctors appointments a month, which is doable. Family and friends continue to selflessly step up and so willingly take care of the two little ones while I have doctor appointments and that is so appreciated! I know that taking care of an almost 2 year old who throws a good fit every time I leave her somewhere and is hitting that age where tantrums come at the drop of a hat, and a very energetic 3 year old boy is not easy. But I am thankful that my kids get time away from me to socialize with other children and other adults. It is a little sad that anytime we take the two little ones somewhere they assume that "Mommy has to go see the doctor." and they are perplexed when another member of the family has a doctor appointment, because in the reference of their memory, I am the only one that has doctor appointments.

A little more tangible medical news I have received lately is my last Muga scan (done in early October) came back with excellent results. My heart function is remaining stable while I'm on a drug (herceptin) which can be very damaging to the heart. I have also deduced that herceptin apparently takes a toll on my skin, as well. The last few weeks I have been dealing with a very interesting skin rash that appears to be related to my herceptin treatments. Within a few hours after treatment, my body looks like I've got a case of the chicken pox. The rash doesn't itch or bother me in any way, it just looks really nasty and takes anywhere from a few days to a couple of weeks to resolve itself. The nurse practitioner's advice is to monitor this rash situation and since the rash itself does not cause any bothersome effects, continue on my herceptin schedule as planned, which makes total sense to me.

I have also been experiencing some vision issues since chemotherapy has stopped. My vision is more blurry, so the nurse practitioner advised I get my eyes checked, as the chemotherapy drugs and steroids I was on have been know to effect vision. Sure enough, I got my eyes checked, and I need glasses. I wasn't specifically told this change is due to my treatments but I was told that it is very possible treatments changed my eyes and there is the possibility that my eyes could get better the further out from treatment I get, but for now I need glasses.

Nobody told me that once you hit your 30s, everything falls apart... If I'd know that I would have had more fun in my 20s ;-). Fake boobs, glasses, very little hair, and a polka dot rash... I told my husband I'd might as well go in and get fit for my dentures next. :-) He accused me of being somewhat dramatic... ha ha. I think he may have been right. :-) Again, a little humor goes a long way.

Thank you all for your thoughts and prayers as the journey continues. I have been blessed, am blessed and will be blessed, and I challenge you to believe the same about your situation.

The Beauty of Birthdays

Today, I've been thinking an awful lot about birthdays. Probably because it is my birthday. I've been thinking about how I haven't had a birthday this special in a long time. Birthdays, for me, lost a lot of their appeal once I turned 25. That birthday was tough for me... a quarter of a century old! Yikes! That sounds ancient (I know it isn't). And ever since then I've viewed birthdays reluctantly... they're not horrible, but they served more of a reminder that I was getting old(er) then anything else for me.

Since having cancer, my view on my birthday has changed. I view my birthday a little more positively. I realize how easily I may not have celebrated this birthday, or how much harder I could have been fighting to hang onto life at this point. Today, I view my birthday as a blessing. God has seen it best that I stay on this earth into my 34th year! How cool is that?!? I'm enjoying it! Birthdays are awesome!

I've also gone from thinking about my birthday to the birth of my children and how special each one of them are to me. I cherish each of my children's "birth" days and their birthdays. They each have their own batch of memories and life changing moments.

The scenario that surrounds the birth of my fourth child keeps running through my head today. That event is so special to me because my heavenly Father sent a special message to me. I didn't hear it that day, though. Actually, it took me several months to hear that message. And now that I've heard it, it nearly brings me to tears (happy tears) every time I think about it.

You see, part of having breast cancer as a young women, is losing your fertility. Not everyone loses it and you might not lose it forever, but the treatment that you go through can make you infertile for a very long time. That was one of the first things the doctors asked me when I went to Mayo to set up my treatment plan. Was I done having children?

Now, as a mother of four, with my youngest having just turned one my response to the doctors was "Heck, yes, I'm done!". But you see, if I was in charge of our family planning, I wouldn't have been done when they asked me that question. Now, don't get me wrong... ever since deciding to try for a third child, my husband and I have wanted four kids. We had our first two almost exactly two years apart (and swore we'd never do that again). We had a nice five year gap, and then had our third. My plan was to wait about three years and then have our fourth. Spread things out a bit... so I hopefully didn't go so crazy this time :-). Well, thankfully, my heavenly Father is in charge of our family planning. You see, nine months after having my third child and as I was just managing to crawl out of a postpartum depression hole, I found out I was pregnant with my fourth. This is the only time I have ever gotten pregnant without planning it and my husband and I both were shocked that I was pregnant.

I'll be honest... I was not happy at all when I discovered I was pregnant. I was barely holding my head above water the way it was and God wanted to throw another baby at me? I'd barely had time to hold and snuggle my third child, and now I was going to have to spend the next four months with my head over a bucket trying not to puke from morning sickness, and then the next five months become progressively more whale-like, until I had two babies to care for. It wasn't supposed to work out like this... not according to my plan.

But you see, everything worked out according to God's plan. God knew my heart's desire was to have four children and God also knew that that fourth child would not happen if He allowed things to happen how I wanted them to happen. You see, if things were going to happen the way I wanted them to happen, I would have just become pregnant with my fourth child right before being diagnosed with cancer, which may have seriously compromised my treatment or I would have been planning to become pregnant very soon, and our fourth child would have never been.

It was a month or so after being diagnosed with cancer that this reality hit me and I heard my heavenly Father's message loud and clear. "I love you, my child. I am allowing things to work this way because I love you. Your child was a gift from me to you. A gift that shows you that I do care about you and what you are going through. I care enough to orchestrate the details of your life. And I'm orchestrating what you are going through right now. Even when you feel like I am working against you, child, I am working so very hard for you. I love you, my child!".

I love birthdays!

What a difference a week can make...

A week ago today, I endured an eight hour road trip across the state with my husband and four kids, post surgery. The kids did awesome on the way home from Rochester. Our youngest never even left her car seat, and  our next oldest did only for a diaper change. They were very patient. I experienced bad motion sickness during the trip and ended up getting sick a few times on the way home. Every time I threw up my three year old would shout from the back "Momma puke?" and my older kids were so impressed that my throw up didn't stink... I guess I'm talented? :-)

Surgery went great. My surgeon said I was his easiest patient of the day and everything sounded like it went textbook. Thankfully, we didn't have to be at the hospital very early (8:00 a.m.) and we had a while to wait before they took me back for surgery (I think it was 10:30). I didn't wear my owl scarf (see previous blog), as I wasn't feeling very humorous that day... too nervous. There was only one point where I'd wished I had worn it. My anesthesiologist's name was Dr. Bacon and he pointed out I could remember his name by looking at the pictures of bacon which were on his scrub hat. At that time, I was wishing I could say, "And you can remember what procedure I'm having done by looking at my hat."

Speaking of my anesthesiologist, he had some great drugs, but I've never felt so much pain from an injection. As he injected the drug in my I.V. to put me to sleep, he said, "Now, some people say this stings a little..." and at that exact moment I felt this intense burning sensation spread from my I.V., up my arm and across about half of my body, before I was out. I still remember arching my body, clenching my fist and trying to breath thru the pain before the world went black.

When I came too, I just remember thrashing my legs in the bed from the pain and vocalizing that I was in pain over and over again. I remember hearing a nurse's voice tell me to hang in there as she was injecting my I.V. with some pain meds. I think I remember her giving me two injections before I could settle my body.

They transported me to my room, where they began giving me hourly doses of morphine. I think it was after the second dose, the nurse noticed a rash spread from my I.V. site. She deduced it must have been a reaction to the morphine. She was going to give me intravenous Benadryl, until I told her the issues I'd had with that during chemotherapy. I told her that my oncologist had had better luck with small doses of oral Benadryl. So she tried that, and within about 20-30 minutes I started to get more of a redness in face and sort of a panicky feeling (just like before I reacted to the intravenous Benadryl during chemotherapy), but it passed. I soon asked for more pain meds, so they decided to try Phentenol (sp?). It took the pain away, and the next hour the nurse gave me another dose. As I started relaxing and started to dose off, my O2 saturation monitor started going off. My O2 saturation had dropped significantly. I started feeling like my throat was beginning to close in, and my rash started spreading. More Benedryl, which pretty much made me super itchy and rashy all down my body. The decided they were going to have to cut me off the intravenous pain meds, as it was too risky considering how my body was reacting to them.

By this time, I had to pee... pretty bad. So the nurse and my husband tried to help me get out of bed, so I could go use the bathroom. I no sooner got the top half of my body upright, then I knew there was no way I was leaving that bed. I was in so much pain, I was sweating profusely and could hardly talk. So my option at that point was a bed pan... how humiliating... but not as humiliating as still managing to pee all over the sheets while trying to use the bed pan, which is what I managed to do. So now the nurse had to change sheets. I have no idea how long it took them to change sheets, but it felt like an eternity of rolling me from side to side... I was in so much pain I could not make a noise. I felt like I was in a torture chamber...it was horrible, but eventually, it did end. By this time, we were way behind on pain meds and the pain was bad. They gave me a dose of oral oxycodone, and an intravenous anti-anxiety med (I was pretty upset at this point), and I soon fell asleep. They kept me on a regular schedule of oral pain meds thru the night, and by morning I felt much better. I could finally slowly make my way to the restroom (thank goodness). And by mid-morning they had begun the process to check me out of the hospital. I was out by noon, I think. I went to my brother's place and rested for the remainder of the day and that night. And then we started our long trip home last Saturday.

It is amazing how much the human body can heal and recover in so little time. I could feel my body turn the corner by Tuesday evening and actually start feeling better. By Friday, I was off my prescription pain meds and only taking Ibuprofen as needed.

I go back to Mayo Clinic in September for a recheck and my first reconstruction expansion. It sounds like after that, my expansions can be done locally, which will be nice.

Humor... Getting Ready For The Next Step

Anyone who has been following my blog at all or knows me in person, knows I have a sense of humor, even if it is peculiar at certain times. I have used humor to brighten the bad times, break the tension of uncomfortable moments, and to enjoy the good times more throughly. A lot of times if you can't laugh, you'll cry, and frankly, laughing is just a lot more fun (and I think it burns more calories :-) ).

I've been spending the day packing for our trip down to Rochester for the first reconstructive surgery. Since I have very little hair, part of packing also includes packing hats and scarves to wear while I'm away. While packing this morning, I came across a scarf someone gifted to me... it is really kind of cute.... pink with owls on it. Maybe it's because I had breast cancer that I have breasts on the brain, but every time I see this scarf I chuckle, because all I can think is "hooters"... and well, I digress. While packing, I was imagining myself wearing this owl covered scarf on my bald head while being wheeled off to surgery all the while cracking jokes about my "hooters". As much as I'd like to use humor to calm my nerves before surgery, I figured I'd better leave the owl scarf behind... and just deal with my nerves some other way. Plus I'm sure they'll have me on some pretty strong medication and I'd hate to say something super embarrassing... :-).

FYI

Just so you know, I was wrong about the Tamoxifen reducing the hormones in my body (as I stated in my last blog entry). I've been doing some more reading on it, and Tamoxifen actually binds to the cancer cells to prevent those cancer cells from feeding on my hormones. So my body should be making about the same amount of hormones, but the cancer just isn't using the hormones to grow. Why Tamoxifen can cause menopause symptoms, I don't know... maybe it binds to other cells too to prevent hormone absorption? I'm not sure...

Anyway, here is a site I've found very informative and useful for learning about different chemotherapy and cancer related drugs. It is www.chemocare.com. I've found the information fairly straight forward and and easy to understand.

Done with Chemotherapy

July 16th was my last dose of chemo, but none of us realized at the time that it was my last dose. My last dose was actually scheduled for July 23rd, but was canceled due to increased neuropathy I had experience since my July 16th dose. My Oncologist wanted to visit with me to decide if we would do that last dose of chemo at a later date. I saw my Oncologist last Friday (July 30th), and after chatting, he agreed with what my husband and I had already decided was best for us... we are done... the risk of developing permanent neuropathy is just not worth one more dose of chemotherapy.

During the same visit with my Oncologist, he also gave me permission to switch my Herceptin to once every three weeks, instead of every week. I was almost more excited about this then being done with chemo... doctoring every week is growing very old. This week is my first week since mid-March that I have not had to spend some portion of my week at a medical facility being poked with a needle. I'm enjoying my needle free vacation!

Unfortunately, I will soon become reacquainted with needles (and other painful things) next week, as I will be having my initial reconstructive surgery to start the process of repairing the disfigurement that was done to my body to get rid of the cancer. This will be a long process, starting with surgery, and then involving periodical (about every couple of weeks) injections to stretch the muscles of my chest, and ending with another surgery. I believe the whole process will take 6 months to a year, depending on how frequently and how far we want to stretch the muscles.

I started a new medication this past week... Tamoxifen. This pill reduces the hormones in my body, which since some of my cancer was feeding off hormones, is a good thing. It does have some possible unpleasant side effects. I haven't been on the pill long enough to tell which, if any of the side effects I'll have.

On a good note, my hair is definitely starting to grow back. I'm assuming it will be months before my hair will be thick enough and long enough to go with out a head cover... I will be anxiously awaiting that day. But for now, I have a sparse cover of 1/2 inch to 1 inch long peach fuzz like hair covering most of my head... certainly not stylish or functional, but there!

Sense of Sadness

If I have to fire off the cuff in a bad situation, I tend to react as a "glass half empty" type of person. However, if given a little while to process a situation, I usually can gain the perspective of the "glass is half full". In my cancer situation, my initial reaction was of course one of "half empty" (or honestly even empty, at some points), but as time passed, I began to see my situation in a little brighter light. But now, especially in the last month or so, my perspective has been a little dimmer. Now don't get me wrong... I still am very aware that I have so many things to be thankful for and I am thankful. I just have noticed that I have had this underlying sense of sadness lately.

I didn't really even understand this change that had come over me until the parade at the fair. There was a breast cancer awareness float, and my 10 year old daughter saw it, got all excited and said, "Mom! That's just like the cancer you had! I'm so happy 'cause you beat it!" and she turned around and gave me a huge hug. I had to work every fiber in my being to not cry, because I knew if I let one tear go, I'd soon be bawling and snotty nosed in front of way too many people. Most of my emotion was of happiness, but there was this tiny bit of nagging sadness, that I couldn't quit put my finger on. Now I think I get it. I have been really struggling lately with the fact that I am realizing that I can't just be done with cancer and say I "beat" it. I think that is where my sadness of late is coming from. I started this journey thinking that someday somehow my old life would return... and now, the further I get into my "fight" the clearer the realization is that I will never get my "old" life back. I will always need to be watching and wondering if cancer is going to rear its ugly head again, and that is just one of the many changes in my life.

So, I honestly think this sadness I've been feeling is a sense of mourning to the end of the naive easy life I used to have before, while transitioning into the life of a cancer survivor. With surviving cancer, a person becomes keenly aware of what it means to be mortal with the clarity I never saw before my cancer diagnosis. As a cancer survivor, there is a lot of numbers (usually percentages) associated with survival rates and recurrence rates. Even though my diagnosis was a very early diagnosis with a probable good outcome, the odds of my dieing early have increased dramatically from those of the average person my age. That hits a person hard. Also, living thru a cancer situation also makes the realization that bad things (really bad things) can just happen one day and turn your whole world upside down so much more real. I now have to try really hard in some situations to just relax and let life happen and not worry about every "what if", because worrying doesn't change if things happen or not.

Now, I don't necessarily think it is a bad thing that I am sad at this point. I think it is a necessary and healthy part in processing this situation. But I do need to get thru this transition. I'm hoping that someday somehow I will get to the point where that sadness is gone, where I can say I am a survivor without feeling that twinge of sadness at the loss of the life I once had and where I can see my glass as a cancer survivor as "half full" and hopefully overflowing!

Rescheduled Again!

Yesterday afternoon I got another phone call from Mayo. Once again, my surgery has been rescheduled.... back to August 12th. It is hard to not be frustrated, as we keep making plans, to only have to cancel them, but I realize things happen for a reason. So I guess we will once again be canceling hotel reservations.

I'm not exactly sure why plans keep changing, but I've maybe picked up on the fact the surgeon's wife can't decide when they should go on vacation. The nurse that called me was very apologetic and embarrassed. She said in sixteen years, she has never had to move a patient around like this. Oh well, not a whole lot we can do... I'm not switching surgeons, 'cause from what I understand he is one of the best in his department.

Change of Plans

Like all well laid out plans, inevitably something will happen to thoroughly muck up those plans. We had a whole family vacation planned around my trip down to Mayo for reconstructive surgery. It involved a hotel stay with a swimming pool, camping with family and visiting the zoo. And, of course, after talking this plan over for a couple of weeks, we finally decided to put the plans in "concrete" and make reservations at hotel and campground, only to get a phone call from Mayo a mere two days later informing us my surgeon would be going on vacation during my scheduled surgery, so my surgery had to be rescheduled. The good thing is, though, instead of bumping me to a later date, they pushed up my surgery date to August 3rd, with pre-op appointments on the 2nd. So now our well-laid out plans have been canceled and we have begun to make new "mini" plans.

I have no idea what kind of recovery or restrictions I will have after surgery, as all the information I had about the reconstructive surgery was based off having immediate reconstruction at the time of the mastectomies, since that was our original plan. I don't know how much the recovery time and lifting restriction time changes with delayed reconstruction vs. immediate. I don't really know what kind of a hospital stay I am in for, either.

In four more days, I will be receiving my last dose of "chemotherapy". Emotionally, I am torn about this. Guaranteed, I'm not sad this phase is over, but I am having a really hard time feeling as happy as I should be feeling. Most of that is because during our last visit with my Oncologist we learned that my Herceptin treatmenst will be continuing weekly, rather then the once every three weeks we were told when we started treatment. My oncologist didn't spend any time explaining this decision, or give us any time to ask questions as to why this changed, but from asking around, I think it has to do with the strength of the dose. When Herceptin is given every three weeks, the dose is higher, and runs a higher risk of damaging the heart. The once a week treatment is a lower dose and much easier on the heart, from what I can gather, so that must be why that decision was made. For some reason, going in for infusion once every three weeks for nine months seemed so much more doable then continuing my once a week schedule for another nine months. I feel a little like I was told I was going to be running a half marathon, training and mentally preparing for that and then as I see the finish line coming for my half marathon I get told that I need to run a full marathon. I don't feel mentally prepared or strong enough to endure another nine months of weekly infusions. I know I'll get thru it one treatment at a time, but it has been hard getting over the emotional let down of not having things be as I expected. But I will deal and get thru it.

The Herceptin treatments will be easier to tolerate then the "chemotherapy", so that is a bonus. Herceptin in not considered a chemotherapy but rather a monoclonal antibody. The way we've had it explained to us is the cancer I had makes too much of a certain protein. This protein allows the cancer to multiply quicker and to "hide" from my immune system. The Herceptin attaches to this protein on the cancer cells slowing the growth of the cancer cells and essentially tagging the cancer cells so my immune system attacks and kills those cancer cells more effectively. My extreme exhaustion should slowly start to go away (although I was told it could take 5-6 months for this to completely resolve) and the discomfort in my body from the Taxol should begin to improve. There is no guarantee all this discomfort will go away, but it should improve over the next six months or so. Each Herceptin infusion should last only about 30 minutes, but then I have to be monitored for 30 minutes after every treatment. So each treatment with take about 1 to 1 1/2 hour, depending on how smoothly things go. The most difficult part of this treatment will honestly just be the inconvenience of having treatment every week and working our schedules around that. I was looking forward to having a Friday that didn't involve medicine, needles, and the hospital... I'm really going to enjoy that Friday when it comes 9 months from now!

Scheduled another surgery

I made a very hard phone call last week... I scheduled my reconstructive surgery at Mayo clinic for August 12th. I procrastinated making this phone call for days, and dreading having to make it for weeks. The reason? I'm just plain tired... tired of doctor appointments, tired of finding people to watch my kids, tired of organizing 6 people's schedules around my treatments, tired of pain. I debated long and hard before making this phone call, but finally I did it.

I nearly talked myself into waiting another year before pursuing reconstruction, but thankfully my husband reasoned me out of it, and I'm glad he did. He knows me well enough to know I will dread that process until it is done, so I will be a happier person to just.... well... get 'er done!

So surgery is scheduled for August 12th, pre-op appointment the day before. From everything I've read/heard this is a very painful procedure (more so then the mastectomies). On the far side, I know it will be so much nicer not having to deal with the prosthesis. Although, I spend a great deal of time not wearing my prosthesis. I find that wearing them irritates my scar from surgery and I still have a bunch of tender nerves from surgery that tend to ache from wearing the mastectomy undergarment. Also, when it is hot outside the prosthesis are just plain uncomfortable to wear. It boils down to the fact that I'm so over trying to look "normal" that a lot of times I just go flat chested.

I've also started getting hot flashes. Apparently, chemotherapy can throw women into a sort of menopause... more commonly referred to as chemopause. You get all the lovely symptoms of menopause and hot flashes showed up with a vengeance with me about three weeks ago. It is the oddest sensation... I can be happily comfortable and then "whoosh" it feels like someone lite a torch on the back of my neck. I can literally feel the sweat instantly start to form on my scalp. This is one of the few reasons I've had to be thankful to have lost my hair... I couldn't imagine going thru this with a full head of hair... I would be very tempted to shave my head! The next round of meds will continue this "chemopause" phase for about five years, and then more then likely I will be thrown out of "chemopause" into "normal" womanhood (which is good for me and my bone health, but not so good on the cancer front because of increased hormone levels), and then when my time comes, I get to go thru menopause with the rest of my lady friends. So no complaining to me about menopause, ladies... I have to do it twice! Just kidding... complain away... I can already relate on some level anyway. :-)

On the chemotherapy front, the cut of 10% on the Taxol made a huge difference in the neuropathy side effects. I've had a lot less numbness and pain in my feet and hands. I still have some numbness and pain, so I will be mentioning that to my Oncologist on Friday.

Cut in Dosage

I am having some neuropathy issues which is causing pain in my feet and hands associated with one of the chemotherapy drugs (Taxol). Essentially, it started out as feeling like I had a mild sun burn on my skin to now it feels like when your hands and feet get really really cold after you've been outside in the winter and then start to burn warming up and my hands and feet now have numb patches. I have felt these effects after each treatment, but after the first few treatments the effects were mild and they resolved themselves, but since the last two treatments, the side effect have only gotten worse and won't go away. So after chatting with the IT ladies at our local hospital and someone in the Oncology Department in GF, they have decided to cut my dosage of Taxol back by 10% starting this Friday. Neuropathy can resolve itself after treatment ends, but sometimes it doesn't. So the medical field walks a fine line with the patient in treating with Taxol once neuropathy presents itself. They want to use as much Taxol as possible to kill the cancer, but they don't want to leave the patient with a painful side effect that lasts the rest of their life either.

Twelve treatments down, four treatments to go...

No Reaction!

I had another treatment this morning, and all went well. My oncologist felt that my body didn't like the instant influx of Benadryl into my port, so he cut my dose of Benadryl in half and administered it orally so my body would absorb it more slowly. I still felt a slight tightness in my chest about 20 minutes after I took the Benadryl. It passed in about 20 minutes, and all went smoothly after that. My oncologist decided since all went well we can do the next three doses at our local hospital. This makes things a lot easier for us... a whole lot less travel and scheduling to do. Phew!

I'm still having a little trouble sleeping... my oncologist talked about cutting my steroid dose in half, but I'm not sure that actually got passed on to the pharmacy today, so we'll see how tonight goes.

We are celebrating my son's three year birthday tomorrow and my niece's 10 year birthday at my in-laws, so it should be a fun weekend. One of the bonuses of going to GF for treatment is family lives in the area, so we get to spend more time with family. Hmmmm.... family in GF and family in Rochester.... do you think God has provided for such a time as this? I know he has!

Ten treatments down, six treatments to go!

Excellent News and Not So Excellent News

Last Wednesday, I had a repeat MUGA scan to see what my heart function was doing. If it dropped more the 4% more, they would have to discontinue the Herceptin drug, which from my understanding is probably the most important drug in our toolbox to prevent a recurrence. My heart function had already dropped 6% during the first eight weeks of chemotherapy, so I knew that another 4% drop was not unrealistic. But I just had a real sense that God had me covered. He is in control and He knows the treatment which is best for me. If my heart function continued dropping and we had to discontinue the Herceptin, I would have been discouraged, but I knew God would still be taking care of me. My Oncologist wanted to meet with me Friday (two days later) to discuss my MUGA results.

My Oncologist told me that there usually isn't a decrease in the heart function once Herceptin is started, unless the post Adriamycin (Red Devil) MUGA shows a decrease in heart function during that treatment (like mine did). Well, here is the excellent news... my MUGA results didn't get worse and they didn't stay the same, they actually improved, and not just a little... A LOT! My MUGA results came back at 63%, which is 3% better then my prechemotherapy baseline and a 9% improvement from my last MUGA (post adriamycin). I am not a doctor, but I interpret those results as God is taking care of my heart so I can complete some more of the Herceptin.

The not so good news is I ended up having a very scary reaction to one of the chemotherapy drugs on Friday. My Oncologist isn't entirely sure which drug I reacted too, but most bets are on the Benadryl, of all things. That is one of the drugs that is supposed to prevent me from having a reaction, but apparently my body does not like it. I got nauseated, flushed, sweaty and had a very hard time breathing (it felt like I had a very heavy weight on my chest)... it was a terrifying experience that I hope I never have to go thru again. My husband said the worst of it lasted less then a minute, but it seemed like a very long time to me. Once they pushed some more medication to offset the reaction, things improved quickly. One of those drugs really knocked me out, and there are portions of that day afterwards that apparently I was walking and talking, but don't recall at all. And much to my  husband's amusement we stopped at Walmart to do some shopping and I was weaving thru the aisles like a drunkard. And boy did I sleep good that night!

Since I had a reaction, my Oncologist is not comfortable with me doing treatment unless he is on site, so he can be consulted if another reaction occurs. So it looks like at least the next two treatments with be in GF. This does make things a little more complicated for us, but we will make it work. We are just thankful my Oncologist is taking such good care of me.

After chemotherapy on Friday, we decided to take the kids on our first ever family tenting trip this weekend. It turned out to be a very relaxing time, which we all needed. Sleeping in tents wasn't even all that bad and the kids did great! We hope to get some more tenting in this summer.

The older kids are done with school, so routines are changing around here and there is more activity. The days are flying by, and before we know it chemotherapy will be done. We just completed treatment 9 out of 16, so only 7 more treatments to go!

Five Treatments Down, 11 Left to Go

A couple of days after getting home from my last treatment, we acquired a stomach virus. It started with my husband and then proceed to attack each of my children sequentially starting with the oldest and ending with the youngest, and finally hit me. When it hit the two youngest, I was still in bed pretty wiped out from chemo, so my husband ended up taking a couple of days off from work to clean up barf and wash bedding over and over and over again. I have an awesome husband! I don't know of many men who would volunteer for such a nasty job. He did great taking care of the sick kids, and I once again, could rest well knowing they were in good hands. By Thursday morning, I had the stomach virus and was still really struggling on Friday. When I went in for my scheduled blood work on Friday morning, they saw how rough I was feeling, so they gave me a dose of an IV anti-nausea med and IV fluids. I felt so much better after that... it was amazing!

Yesterday and today I started the next phase of my chemo treatment. It started with a visit with my Oncologist. He gave me the results of my second heart (MUGA) scan which I completed a little over a week ago. My first pre-chemo heart scan result was 60%... right smack dab in the center of the normal range. They wanted to retest me after I'd finished the Adriamycin (Red Devil), as it is known to occasionally weaken the heart muscle. The next drug I start (herceptin) can also be hard on my heart, so they wanted to know how my heart was functioning before I started that drug. My second scan result was 54%, still in the normal range, but dropping to a level that makes me nervous. If I drop below 50%, they have to stop giving me the herceptin, which from my understanding, the type of cancer I have has a much higher recurrence rate without that drug. I was not surprised to see a drop in my heart function, as I've been having some bizarre symptoms such as time frames where I can feel my heart race which makes me feel icky, my blood pressure keeps creeping lower and lower, my hands and feet have had some minor swelling, I've had a few near passing out episodes and I tire so easily. So please pray that my heart would stay strong so I can finish the drugs that are needed to treat my cancer!

Thursday, I took my first dose of herceptin. It was easy peasy! No side effects what so ever! As a matter of fact, that same night, I visited a new Mexican restaurant where they served me the largest and most delicious burrito I have ever seen! Think Chipolte, but probably a good 30-40% larger. I think this must be the phase where I gain the 20-30 pounds I've been warned of... food finally looks and tastes good again, which I certainly am enjoying and hoping it stays that way!

Today, I had my first dose of Taxol, which is the drug they were most concerned I would react to. They gave me a premed IV steroid and IV Benadryl and Pepcid to help fight off any allergic reaction and stomach issues. Other then the Benadryl knocking me into a fightful sleep where I attractively drooled all over the hospital's pillow, there were no other side effects! I can tell I'm still very tired, but my mind is so much clearer now then it ever was on the Adriamycin and Cytoxin. This a blessing because I hated that foggy minded feeling that lasted nearly a week with the last chemo treatments. And as of now (8 or so hours post Taxol) I have had zero nausea! Hopefully this continues. I was knocked down to only two oral anti-nausea pills (they've cut out the two strongest - and one of them was the most expensive) and I really don't even have to take those unless nausea rears its ugly head. They've also cut out my oral steroid as well. I also don't have to get an immune system boosting shoot anymore (Neulasta) either, which was a very painful shot I had to receive the day after chemo. Yeah!

So, all in all we are doing well, and I am optimistic that life may return a small piece of normalcy to our crazy household. Thank you to the multitude of you all who have helped carry us this far! I realize that the road is still long, but most days on this road I have felt blessed, thanks to an amazing Heavenly Father and amazing family and friends! I know all of you have your own struggles as well. My hope for you is that you can see the blessings in the dark times. God does love all of us. I must admit, I've had many days where I don't FEEL God's love or blessings, but I KNOW it is there. Some days I CHOOSE to look hard enough to see His hand and blessings in my life and those days turn out to be some of my best. Unfortunately, some days I CHOOSE to give up and not see Him in all of this. I guarantee my lack of vision is not a reflection of God's workings or presence, but a reflection of my poor mindset and lack of faith. But I KNOW in those times that God's loving hand is holding me and my situation. God has big hands and I KNOW He's holding you as well!

Bye Bye Red Devil

Yesterday afternoon, I received the last dose of Adriamycin (aka The Red Devil) and Cytoxan. I am thankful that there are such powerful drugs out there to treat my cancer and to give me a much better chance of being a survivor, but I am just as thankful that phase of treatment is done, and we can move on. God willing, I will never have to go thru that particular treatment again. Everyone tells me these drugs were the toughest drugs in my schedule, and I am the type of person that if there is something tough I have to do, bring it on and get it done so I don't have to think about it. So I am thankful the hardest part was first.

My visit at the clinic was a little more eventful then we had initially planned, since unknown to myself, I was still running a low grade temp when they checked my vitals. I felt fine (or as fine as one going thru chemotherapy can feel), other then that nagging tenderness in my lower abdomen, and the fact that the lump under my arm had returned and was also very tender. The oncologist feel both issues of tenderness were of no coincidence or worry, but he did feel inclined to repeat the work-up I received at my local hospital earlier in the week. He truly felt I was fine, but being that he'd just had a patient come in with a septic (infected) port, he wanted to check and make sure that was not my case, as well. They also ran a urine analysis as well, to continue keeping an eye on my abdominal pain. I have heard nothing of the test results, which I assume is a good thing.

So in another two weeks we head to GF for more chemotherapy. I will be receiving two new drugs (Herceptin and Taxol) and since both run a higher chance of allergic reaction I will have to receive each drug on two consecutive days, so my reaction to each drug can be monitored clearly. This means my husband and I will probably have to leave the kids again for a couple of days and the way the timing falls it means I will also miss the two older kids' Spring program. Initially, this made me very sad and angry, that cancer could take that away from me, but I got over it and choose to realize there is so much more that it hasn't and can't take away.

After this initial dose of the two new chemotherapy drugs, the remaining eleven doses can be given together on a weekly (every Friday) basis. And our understanding (maybe more of an assumption and a wish at this point) is that those doses can be done at our local hospital. It makes setting up childcare so much easier if we don't have to add four hours to the time frame we are gone for travel.

3/4 of the Way Done With Double Dose Chemotherapy

Friday, I had my 3rd and second to last dose of the double dose chemotherapy. We had to go to GF to meet with my oncologist and have the treatment. Other then having a hard time finding a way to get across the red river, the trip was uneventful. In two weeks, I will have my final dose of the double dose chemotherapy! Then we are on to the next type of chemotherapy administration, which should last about three months.

My oncologist said my chest xray from urgent care last weekend looked just fine... nothing to worry about. I don't know what made the difference, if it was the breathing treatment or the antibiotics, but my cough is 95% better, which is a relief. My asthma is also well under control. I kind of think I had some sort of bacterial infection going on, as it took 4-5 days after starting antibiotics for my cough to go away.

I am very exhausted after this last treatment. I can sit up for small periods of time, but am most comfortable lying down and resting. My husband and the kids are gone for the weekend, as his grandmother unexpectedly passed away. This is very sad news, and it was very hard for me to stay back while he and the kids attend the funeral, but we all knew it was best for several different reasons. Grandmother Darlene will be greatly missed and I am so sorry I will not be able to attend the funeral.

It Feels Good to Feel Good (or at Least Better)

I'm finally back to pretty much full energy. I really think this last round of chemo was a little easier on me. I don't know if it just felt easier 'cause I knew what to expect, or if my body truly didn't react as badly. The nausea was not nearly as bad, however, the tiredness was probably worse. I have decided, though, that feeling like I need to sleep all the time is easier to deal with then feeling like I have to vomit all the time. My next chemo is on Friday in GF.

Having the two youngest in daycare last week went very well. They seemed to love it. They rush to the door to leave in the morning and rush to my side when they get home. I get lots of hugs and kisses and playtime when they come home. I can tell they have missed me (and I them) but I can also tell they had a wonderful time at daycare. Their provider is amazing and I can rest well knowing she is taking wonderful care of them. And the reality is, I needed every moment they were at daycare last week to rest and recuperate.

Last Friday morning, I went in to have my blood levels checked. Everything checked out fine, as far as I know, but I discovered my body does not like the Heparin that they use to "flush" my port with after blood draws. It makes me very dizzy and light headed... drops my blood pressure down very low. I had to lay down for 15 minutes or so after the Heparin was administered before I felt that I could walk w/o passing out. A very minor inconvenience... I'm still thankful for my port.

We had a nice weekend with family, celebrating my two oldest's birthdays with family and Easter, as well. I did end up having to visit the doctor (urgent care) on Easter, as my asthma was flaring up and my meds were not helping at all. I ended up getting my blood work rechecked (everything was fine except I had very low blood sugar - I figure that just gave me a good excuse to eat extra Easter candy :-) ), having a nebulizer treatment (which help my asthma improve so I can maintain with my prescription meds at home), having a chest xray (which the doctor phrased "I think it looks okay" and suggested I have my oncologist look at it due to the fact my lungs looked grainy... probably from chemo), getting a shot in the butt (ouch!) of antibiotics, a take home prescription of antibiotics and a prescription for cough syrup with codeine (which apparently helps my cough but makes me vomit violently w/in a few minutes of taking it). I'm avoiding going to bed tonight, as I haven't quit decided if I should take the cough syrup which helps me sleep better after I've vomited a few times. Vomit or cough? Vomit or cough? I'm leaning towards vomiting, as I really like my sleep and I can't sleep if I'm coughing all night long. At least the vomiting only lasts a few minutes and then I can go to sleep.

It's done.

My husband just finished shaving my head. I must say it is a look I never thought I would sport, and it is not very becoming, but it is done. This morning my hair started falling out in huge clumps everytime I ran my hand thru it, so I decided it had to go. Let's just say I'm thankful for my wig, scarfs and hats... 'cause bald is not my thing.

On the bright side, it will grow back... and hopefully not gray :-)!

"Hairy" Kiri

Well, my hair has started to make a slow release from my scalp. Yesterday, the amount of hair that left my head was significant. I realized the death of my hair had begun when my one year old grabbed my hair yesterday and pulled out a huge handful with little effort on her part. I've already decided I won't be putting up with the slow loss of my hair and will be shaving my head when the loss of my hair dramatically increases, creating messes in the sink, shower and floor. I am hoping this will happen after Wednesday, as it is my oldest's birthday and I don't want her to remember her day as the day mom went bald.

I do have a wig and several hats and scarfs. I really don't think I will be much of a wig person, but it is hard to say right now. Since most of my bald time will be in the spring/summer, I imagine a wig would be very hot and scratchy, so I am thinking hats will be my preferred head covering. But I won't know until I am going thru it.

Chemo #2

I am officially done with 50% of the really bad nasty chemotherapy (double dose). This morning I went in and had my blood work checked, met with Oncologist and got my second treatment of chemotherapy. It was very uneventful, thankfully. And the ladies in our local Infusion Therapy room are very helpful and sweet. My Oncologist did add an additional anti-nausea medication, so I am now on 7 prescription meds... 2 for my asthma (which has been acting up horribly the past month) and 5 to treat post chemo nausea. It is really hard to keep all the meds straight and the dosing right. I told my husband that he should write me an application for my itouch, so I can keep track of meds on it and have reminders of when to take the meds.... the perks of having a computer geek (said in the most loving way of course!) for a husband :-). I guess I could just use a pen and paper, but that sounds so boring :-).

I did get my port stitches removed today and that feels wonderful! They were snagging on my shirt and itching something horrible, so I was not at all sad to see them go. I am now free to shower, bathe and swim without having to cover the incision. Yeah!

My next three treatments will have to happen in GF. Since the chemotherapy I am on is so strong, the Oncologist wants to personally see me for the remainder of these treatments. And then I will be switching to a different chemotherapy regime, so he would like the first dose of that done under his direct supervision as well.

On a side note, I have come down with a nasty head cold. I've felt it coming on for the past week, and finally, on Wednesday, I lost the battle. I'm sure my lowered blood counts from chemotherapy didn't help. Those who know me well, know that I HATE head colds. I can't sleep with all the congestion and the head cold aggravates my asthma. I've already been having a hard time with my asthma. Add all the congestion and coughing that comes with a head cold, and I am feeling miserable. I haven't sleep well the past couple of nights. So I am shouting out with a prayer request. Please pray that I can sleep! My husband and kids will thank you (and so will I) :-)! 'Cause the saying is right, "If Mama ain't happy, ain't nobody happy!".

I've been slowly trying to get thank you notes out, but unfortunately I am behind. I will keep plugging away, but I would like to let you all know how much you have blessed us thru all of this. So many people have taken care of us in so many ways... meal making, baby sitting, gifts, prayers, notes, messages and cards of encouragement, and phone calls. All of it means so much to me. Thank you!

I am fully prepared for the next few days to be rough, but we will make it thru. I have my stash of anti-nausea meds, frozen meals (thank you Bible study friends!), and I am so thankful for my very helpful and supportive husband... so we will make it! Thank you for your prayers!

Mashed Potatoes

Our trip to GF on Monday was uneventful for the most part, until we decided to eat lunch. I'd been nauseated and eaten so little for so long, that my husband was thrilled to hear me say I was hungry for mashed potatoes and gravy for lunch. So being the awesome guy he is, he searched for a KFC and ordered me a large side of mashed potatoes and gravy all for myself, which we picked up in the drive thru. I immediately pulled out the container of potatoes, opened it up and took a fork full.... mmmm it was so good! I was just getting ready to pull the container of gravy out of the bag to add to the potatoes when I felt something very hot against my leg. The lid on the gravy had become dislodged and hot gravy had spilled out of the container, into the bag, thru the bag and onto my lap. So I quickly set the potatoes on our center console in the car and tried to rescue my leg from the burning gravy. At the exact moment I set my potatoes down, my husband turned a corner and the open container of mashed potatoes flipped and landed open side down smack dap centered in my crotch. So I had hot gravy on my thigh and piping hot potatoes piled in my crotch. I started shrieking at my husband to pull over so I could get some relief from the burning potatoes and gravy, but there wasn't a nice place to pull over right away. So I quickly scooped as much of the potatoes out of my crotch and back into the container as I could and waited for my husband to pull over. Once we pull over, I stepped out of the car and bent over with my butt facing on coming traffic and began peeling layers of mashed potatoes out of my pants crotch with a gravy soaked KFC napkin. I rescued my legs and crotch before burns set in and my pants became somewhat presentable, but my dignity was long gone.

Thankfully, I'd rescued enough of the spilled food to satisfy my fleeting craving. And we got a good laugh out of the deal, as well!

Turned the corner

Ok, it's official. I'm a chemo wimp. The side effects of chemo SUCK! I would sooner go thru having a baby with no pain meds then sign up for another chemo treatment. At least with child birth I always had the energy to fight thru the pain and work with the pain. I still felt like me and somehow stronger and more empowered at the end. (I'm sure having a baby to hold at the end helped.) With chemo, it zaps your energy and makes your brain feel all icky and foggy... in short it feels like it is sucking the life right out of you. I don't feel stronger or more empowered from chemo... yet... maybe that will come after my 15 other treatments... sigh.

I was not prepared for what chemotherapy would take out of me. I thought that maybe 2 or 3 days of feeling like I had the stomach flu and then I would feel like myself again. That did not happen with me. I spent most of Saturday thru Monday flat on my back with stomach flipping nausea and extreme exhaustion. By Tuesday I could be up in small spurts, and every day has gotten better, but I wouldn't say I feel 100% yet. I'm actually wondering if I'll hit 100% by my next treatment.

But with that being said, I am so thankful for how God has provided for us thru all of this. Monday night, my husband was feeling really bad about having to leave me to go back to work on Tuesday since I was still feeling very ill, and my husband's Aunt called and offered to come help for a couple of days. She has been up for the past couple of days taking superb care of the house, laundry, cooking, kids and myself. She was my life saver this week, and I am so thankful for her and what she did. Her taking care of us gave my husband the freedom to return to work and deal with some pressing issues, since he had been out since last Wednesday. Thank you Aunt Kathy!

On another good note, we have gotten some good news in the after shocks of our first chemo treatment. Yesterday, GF called and the pathology came back on my axillary cyst as clean... no cancer! It is so nice to get good news!

I consider this first treatment of chemo a good learning experience. I have learned that chemo hits me very hard, and no matter what I would like to be capable of, I know I won't physically be capable of taking care of my one year old or two year old for 4-7 days after each treatment... not safely anyway. Taking care of myself will be a challenge enough. And thru this all, my husband still has to have a job at the other end of it, and has to function in that area of his life as well. He can't stay home week after week getting further and further behind at work. This first treatment of chemo made me realize I needed to do a very tough thing. Yesterday, I signed my two smallest children up for daycare.

I am very thankful to have found a daycare to take them and who is understanding about our situation. I know they will be in excellent care and will grow thru this experience. They will make new friends, be in an excellent environment and learn to adapt to other surroundings. And I know I need this time to heal and recover from very harsh medications. But I feel horrible. I'm supposed to take care of my babies. I'm not even signing them up for daycare so I can have a career and be productive and make a difference in the world. I'm signing them up so I can stay home and lay in bed for days on end. Yeah me! (Yes, I am a little sarcastic.)

I will meet with my Oncologist the day of and before my next treatment. I'm hoping he will have some different antinausea meds to try this time around. I was on four different medications and was still struggling. There has to be something better out there. Maybe I can beg him to put me in a drug induced coma for the week after treatment? (Only kidding :-) ).

Chemotherapy One

I got four drugs administered during my chemo session. The first drug I was administered was Zofran, which in an antinausea med. The next drug (Desamethasone) was a steroid, and I need to clarify exactly what it was for next time I have it administered. My understanding at the time was that it was to minimize the chance I would have an allergic reaction to the actual chemotherapy drugs, but now that I'm thinking about it I think it may have been for nausea as well.

Next came the actual chemo drugs. The first was Adriamycin. This drug had to be push fed by a nurse thru a syringe (into my port) for the entire treatment. It actually was a very pretty dark red drug (often referred to as "The Red Devil") and was a very climatic way to start chemo. I got to watch that pretty red poison travel from the syringe, down about 2 feet of clear tubing, right into my port (next to my heart). I wanted to scream and celebrate all at the same time. This was the only drug I felt any kind of immediate physical change with. Within a minute or so of the drug entering my port, the roof of my mouth and back of my throat got itchy... nothing drastic, but definitely there. I immediately told the nurse administering and she put the brakes on and consulted another nurse. The second nurse asked if I tasted anything? Yes, it was a weird taste. The closest thing I could come up with was maybe what it would taste like if someone sprayed perfume and you got a tiny bit in your mouth.... bitterish yuck would be the non-technical description. She said this was a common side effect in younger women and we could proceed (under supervision). The remainder of "The Red Devil" was administer with no complications.

The final chemo drug is called Cytoxan. This was definitely the most time consuming part of the treatment. The total time spent administering all of the drugs was a little over 2.5 hours, I think. Once we were finished, we headed over to the pharmacy to pick up my three prescriptions for antinausea medication.

The day after treatment I have to receive the Neulasta shot to help my bones produce more white blood cells since chemo kills white blood cells. So today, I head to my local hospital for that shot. Then on Friday, I go in for blood work, so they can check my blood cell counts.

My next treatment and a followup with Oncology will happen on the 26th of March (right before my two oldest children's birthdays) at our local hospital. I should expect to lose my hair shortly after that treatment. I'm hoping my hair hangs on long enough, so my kids don't have a bald Mom on their birthdays.

Side effects: So far, I haven't experienced much for side effects. About 4 hours post treatment, I did start to feel nauseated, so I took one of my meds and since getting out of bed I have had to take another. But once that medication kicks in the nausea isn't so bad... more like what I felt being in the first trimester of pregnancy and know I wasn't going to throw up, but still feeling very woozy. The steroid drug administered causes insomnia, so I really haven't slept at all. I am exhausted, but my body won't seem to fall into a deep enough relaxed state to actually sleep. I've had some minor stomach pains as well.

Precautions: During treatment I learned something that none of my pretreatment reading told me. Apparently, the chemotherapy drugs I received can be transferred to other people thru my bodily fluids. And I guess this stuff is so nasty that they don't want to chance anyone being exposed to even a residual amount thru me. (Doesn't make me feel great since full strength is being ran straight thru my veins, but it must be better then having cancer). So I have to take special precautions.

The first precaution is double flushing. For the first couple of days post treatment, every time I use the bathroom, I have to double flush. And they also forewarned me that the pretty red chemo that goes in red, comes out red. And it happens immediately. I had to pee so bad after getting all those drugs and drinking 4-5 cups of water during treatment, that I stopped at the first bathroom I saw and sure enough, red pee.

In addition, I cannot kiss anyone for a few days post treatment. Apparently my saliva touching their skin is bad. So no kisses for my kiddos or hubby(and obviously, nothing else for hubby either... poor guy). My youngest son had a really hard time with no bedtime kiss, because we have a silly bedtime routine that he loves and part of it is a kiss. It took quit awhile to calm him down when he realized he wasn't getting a kiss. And my kisses are owie fixers for him as well. He could be traumatized by a bump and all I have to do is give a small kiss and all is well. What am I to do now?

Also, I have to drink a very large amount of fluids the day of and for a couple days after treatment (3 quarts). Apparently, they want the drugs in long enough to do their thing and then out as fast as possible. So the more I drink, the faster the drugs are removed.

Oncologist (Take Two)

The Oncologist seemed to be having a much better day. Much more relaxed and less in a tizzy. He was comfortable with how we are proceeding with the axillary lump and he agreed with me that the cough I've been dealing with for a week and a half was my asthma flaring up, so he started to set up a chemo start day.

Initially, he wanted to start Tuesday, but I told him I'd prefer a Friday start day (since you have to keep the same day of the week throughout chemo, if at all possible) so my husband could be home to help with the kids on my roughest days. He thought that sounded like a good idea, but really didn't want to wait another week, so he asked if we would be willing to do chemo right then and there in GF. Thankfully, Barb E. had kind of warned me this may happen, so I'd had a little time to prepare myself emotionally for that possibility, so I agreed.

Port Placement

Friday morning, we left my in laws early in the morning for my port placement surgery. I had to get an IV placed and for the first time in my life the nurse had a hard time entering my vein. Being poked once in bad enough, but being poked multiple times is downright miserable. I was kind of glad this happened, because at that point I was pretty sure I'd never regret my decision to have a port.

They gave me a dose of antibiotic, and then we went into surgery where they gave me some drugs which broke my "give a care". I technically wasn't put under, but I did have a good nap. I do remember bits and pieces of the procedure, but nothing too traumatic or painful. Basically, I remember them cleaning the surgery site (right below my right collar bone), injecting the numbing agent, some painless pressure and them stitching me back up.

I do have some pretty serious bruising, and feel pretty tender, but Tylenol does relieve most of the pain. I have to leave the bandages on for three days, and have the stitches removed in 10-14 days, and then it sounds like the port is pretty maintenance free, on my part.

Ear Infection

On our trip from home to my in laws (where we will stay during our GF doctor appointments) Thursday morning, our youngest cried most of the first part of the trip. We finally stopped an hour into our trip and dosed her with Motrin, as she had been grabbing her ear and screaming "OWIEEEE". This was the first indication I'd seen she may be fighting an ear infection and of course it happened right as we were leaving town for two days and right before the weekend as well.... Murphy's Law. When we got back to my in laws from our GF appointments on Thursday afternoon, she woke up from her nap and was obviously in extreme pain again. So I called the local hospital and found out they offered Urgent Care, so I took her in to be checked.

We waited quit awhile to have the doctor look at her for about 1.5 minutes (I didn't expect much more from Urgent Care), and yes, indeed, she is fighting an ear infection. The doc said he'd write a prescription for antibiotics and he told me to pick up an over the counter cold medicine for her and left the room. After he left, I started thinking, do they even make over the counter cold medicines for toddlers anymore? I didn't think so, but decided I'd ask the nurse when she brought in the prescription. I waited and waited and waited (how long does it take to write a prescription?). I'm guessing it was 30 minutes or more and finally the nurse said they were waiting on a dose of Tylenol with Codeine in it from the hospital pharmacy for my daughter (15 months old) that the doctor had already ordered (without asking me, might I add). I looked at the nurse like she was crazy, and opened my mouth to say "Don't you think that is a bit overkill?", but then I stopped myself. I brought my baby to Urgent Care to have the doctor take care of her. He obviously saw a reason why my baby needed such a strong pain killer (probably the fact she was screaming for most of the hour and a half we were there), so I decided to let the doctor take care of her as he should know what medications are beneficial and safe. I did ask the nurse about the cold medicine and she told me to ask the pharmacy. So my daughter took her Tylenol with Codeine and we got her prescription for an antibiotic and we headed for the pharmacy.

I asked the person working the pharmacy about cold medicine for a 15 month old, and he looked at me like I obviously was a clueless first time mom (I only had my youngest with me). No, they don't manufacture cold medicine for that age group, as it is not safe for them to take. Exactly as I thought. I told him the doc told me to get some for her and he said "Oh, did you have doctor Q...?" And of course I said yes. He proceeded to tell me that that doctor didn't know and was kind of clueless.

Why didn't I trust my motherly instinct and tell them to keep their Tylenol with Codeine? That my baby would be just fine on over the counter Tylenol and Motrin? In reality she was just fine having taken it and was pain free for quit some time afterwards, but I felt like a horrible Mom for letting them give my child a medicine I wasn't comfortable with and not going with my instincts. Thankfully, there was no harm done, lesson learned, and life goes on.

Axillary Ultrasound and Consultation

When I showed up for my Ultrasound, the tech actually asked me what she was supposed to be ultrasounding. I was relieved, because I was still wondering if I was going to have to convince her to ultrasound my axilla and NOT my nonexistent breast. She didn't seemed too surprised to be ultrasounding my axilla, but after taking a few pictures of my swollen area, she did leave to go talk to the doctor. This kind of freaked me out (and she was gone a long time), because part of me was convinced that was bad news. It was just hard not to think that after my last ultrasound of a lump turned out to be picturing my breast cancer. In reality, I really think the tech was planning to ultrasound my breast and when I told her axilla, she probably didn't know exactly what kind of shots the doctor was looking for, so she was just doing a thorough job and verifying she was getting the doctor what he needed.

The ultrasound pictures showed my swollen area as this huge black void with nothing inside. The edges were very smooth and defined, which we later were told is an excellent indication of a benign (noncancerous) situation.

We then went to meet with the General Surgeon. He was very nice and informative. He even asked details about my breast cancer, and told me he knows Mayo did a fine job, but he would have handled my situation just a little more cautiously. He said he would have removed more lymph nodes (on the right side, where my cancer was noninvasive, and Mayo didn't take out any lymph nodes) and he would have taken out just a tiny bit more of the breast tissue. My surgeon at Mayo had gone thru with me why he was choosing to do things the way he did, and I was (still am) comfortable with how he did the surgery. The minuscule increase in risk of breast cancer recurrence was not enough to offset the other risks taken by removing extra lymph nodes and tissue. I think this surgeon in GF may have been a little more risk adverse in a breast cancer situation, since his wife has battled breast cancer twice in the last 9 years.

We reviewed our ultrasound images with the General Surgeon in GF and he was very relieved to see the images looked very convincing we are dealing with a fluid filled pocket which is residual from my mastectomy surgery and lymph node dissection. He actually left the room for a few minutes to go consult with a Radiologist to get his/her opinion on my situation. The Radiologist's opinion was watchful waiting for three months, but the Surgeon just wasn't that comfortable with that idea. He said he would like to aspirate the pocket and send it to pathology just to verify. He said the procedure is so simple and riskless that it would be foolish to not do (considering I had breast cancer) the verification that we are not dealing with a spread of my breast cancer.

So we go back to GF on Monday to do the axillary aspiration of the fluid filled pocket. It should be a very simple procedure lasting less then fifteen minutes.

The Circus Has Left Town

Boy, I don't know what went down between our first visit to GF and this Thursday, but one thing is for sure, it was a TOTALLY different experience. I honestly showed up feeling a tiny bit concerned for my safety after what went down last week. Seriously, it appeared to be a whole new operation. I think we came into what created the perfect storm last time (new computer system, rushed doctor, poor handwriting, back-up scheduling nurse, and a complicated situation). I did give someone at our local clinic a call, who I'd been told is excellent at advocating for local patients with GF and asked her to verify that I was indeed showing up for the correct appointments at the right times (every time I talked to GF I had different times and types of appointments told to me). So Barb E. took care of that (she had said it was still messed up when she called) and things went so smoothly after that. Thanks Barb E.!

Seriously?!?!

Ever since walking thru the door of Altru in GF last Thursday, I feel like I have entered the "twilight zone" of the medical world. Absolutely every dealing I've had with them has left me dumbfounded. I'm hoping I've dealt with the last of such antics, but I have a feeling that is not the case.

They called this morning asking me to forward my Mammogram and Ultrasound films from Mayo to them. Sure, no problem... I contacted Mayo and had it taken care of in a matter of minutes. Then later, I started thinking, "Why do they need my breast mammograms and ultrasounds, if they are doing an axillary (arm pit) lymph node ultrasound and biopsy?". Oh well, no worries... they will have the films and that is what they wanted. Fast forward about 3 hours and I get another call from yet another department at Altru asking me to get them my mammogram and ultrasound films from Mayo. After explaining to them that I had already received a phone call requesting those films (they had no clue I'd already been contacted) and had already taken care of it, I proceeded to ask why they needed them. They said they wanted them for doing my left BREAST ultrasound and biopsy. Seriously?!?!

Ok, I wouldn't expect just everyone I talk to to know that I received a double mastectomy, but I do expect a medical facility that has had my medical records forwarded to them concerning my breast cancer treatment and that is taking over my medical care for breast cancer to know that I had a double mastectomy. So I proceeded to explain the fact to the caller that I was supposed to be getting an AXILLARY ultrasound and possible biopsy, and that I had just gotten a double mastectomy. They had no clue!

I have a feeling I know how this misunderstanding started. It started with our Oncologist's poor handwriting. He wrote down the orders for the axillary ultrasound and biopsy and then handed them off to a nurse to schedule. While we were standing there waiting for the nurse to schedule the appointments we overheard her setting up an appointment for a breast ultrasound and biopsy. We corrected her and said it was Axillary. She kind of gave us a funny look, stared at the docs handwriting and said "huh, is that what that says?" and continued on making our appointments. So apparently either, A) she didn't believe us (and didn't take the time to verify), or B) she didn't care enough to go back and change the mistake she had made.

So I have a feeling that when I show up for my Ultrasound on Thursday they will be expecting to ultrasound my nonexistent breast.

Miscommunication

Well, GF called today, and apparently between doctor, nurse, and scheduling there was some sort of miscommunication. We are scheduled for both Thursday and Friday appointments. The ultrasound and biopsy are scheduled for Thursday with port surgery and Oncology on Friday.

Discouraged

Well, today we met the Oncologist who will be overseeing my Chemotherapy. To be honest, I was not impressed. He was very late, and seemed rushed and disjointed. I don't know if this is how he normally is or if we just caught him on a bad day. (Or maybe Mayo just spoiled us rotten :-) ) Or maybe he was just truly baffled by what he found while he examined me and that threw him off, but I honestly left the appointment feeling very confused. You see, he examined my surgery site, and while examining me he felt in my arm pits and discovered a rather large lump (that I had already noticed a couple of days ago) on the side I had the invasive cancer which he thinks is a lymph node. This seemed to concern him, even though he said it would be very strange that it would actually be cancerous, being that the sentinel nodes were removed and found to contain no cancer. He said he had never seen anything like this post surgery and needed to look into it further.

So as it stands now, I go in to our local hospital for a MUGA scan to get a baseline test of my heart function before I start Chemo, since one of the possible side effects of chemo is damage to the heart. Then on Thursday, I go back to GF to have an ultrasound taken of my swollen lymph node and if they deem it necessary, a biopsy as well. Then I have a port for chemotherapy surgically placed and then I meet with the Oncologist again. Hopefully, at this point we will have a better idea of a chemo start date.

Plastics and Oncology

We met with my reconstructive surgeon this morning. He was thrilled with how well the incisions are healing up. He feels it is best to delay reconstruction until we are finished with the "hard core" chemotherapy drugs (first five months), as the risks of healing complications and infection is too great otherwise. We are in no hurry to complete reconstruction and he said we could wait years if we wanted. Right now, we are leaning towards doing reconstruction within a month or two from "hard core" chemo completion, but that could change to become a longer time frame if my body needs more time to recover from chemo.

I was correct about the cause of my range of motion issues in my shoulder (see previous blog). I mentioned my concerns to my reconstructive surgeon and he immediately sent me to a physical therapist. It sounds like the therapist I saw specializes in range of motion issues with post mastectomy/lymph node dissection. She confirmed my suspicions, and I indeed have what she referred to as "cording", otherwise known as axillary web syndrome. She took the time to demonstrate and explain a few stretches that may be beneficial for me. She said the cording will resolve itself, and sometimes the stretching helps and sometimes it can make it worse. So I will use my own judgement as to if and how much stretching I do, based on the results I see. I don't have to worry about my range of motion being permanently damage, she said it always resolves itself.

We didn't learn a lot new at our Oncology appointment. Treatment stands pretty much the way they thought it would based off pre-surgery information. Pathology tests reconfirmed the fact that my invasive cancer was her2/neu positive, therefore the drug Herceptin is an excellent treatment choice for me. I did learn today that I had more then just one location of invasive cancer on the left side. Pathology found several separate locations of invasive cancer in my left breast. The good thing is testing showed that the cancer did not reach my lymphatic system or my blood system. We are proceeding with the following chemotherapy treatments as more of a preventive measure then anything:

8 weeks of Adriamycin + CTX (administered every other week intravenously)
12 weeks of Taxol + Herceptin (administered weekly intravenously)
9 months of Herceptin (administered every 3rd week intravenously)
5 years of Tamoxifen (I think this is oral)

Seeing as I will be having approximately 14 months of intravenous drugs, I will be needing to have a port inserted. I don't really understand how this procedure works, but I imagine I will find out soon. Essentially, a port gives a site to have my chemotherapy administered without having to locate and correctly enter a vein every time.

I was told that I will lose my hair with my chemotherapy... they said around two and a half weeks after my first treatment. So I got a prescription for a "cranial prosthesis" (wig) and went to the hair and skin center at the hospital at Mayo. They have a program that gives a free wig to cancer patients. So I received a wig that is exactly the same color as my hair and a similar length. I need to have it cut (layered). Essentially, I can use this wig, and if I decide I am a wig person, I can use my prescription and purchase a nicer, more styled wig. If I decide wigs aren't my thing, then the free wig was a learning experience.

It sounds like I won't have to return to Mayo until my reconstructive surgery (which should be late summer, early fall). Next Thursday, we will make a trip to the Cancer Center to meet with the Oncologist who will be overseeing my treatments at our local hospital. Chemotherapy should start shortly after that.

Complications

Ok, so maybe what I really have been dealing with isn't truly considered a complication, but it is annoying. I am experiencing what I have self diagnosed as "Axillary Web Syndrome". OK, I confess, I'm a little addicted to searching the internet when I have some unknown symptom. I'm not a hypochondriac though and in my defense, I read a lot of different articles, sites and opinions and I'm pretty aware of what are reliable sites, and what aren't (Mayo has an excellent site!). So my conclusions are based on a lot of information. I am also keenly aware that my self diagnosis could probably be wrong, but reading online helps me decide how promptly I should consider contacting my doctor. Which I guess considering I waited eight months to get a breast lump checked out based on the fact that I self diagnosed myself with a breast cyst, should indicate my method is not working all that great! But, I digress....

Anyway, back to Axillary Web Syndrome. I couldn't find a lot on this, but basically found about this syndrome by searching for my symptoms. Essentially, I can't lift my left arm much higher then a 90 degree angle with out feeling extreme pulling and some pain from directly under my arm pit to down below my elbow. I also discovered a few days ago, while trying to do my daily stretches that my arm pit is "webbed". Ok, if you are seven and have a fascination with Spider Man, that may sound cool, but believe you me, it is not cool. I have discovered I have these tight bands that run from under my armpit down my arm that feel like tight fiddle strings when I stretch. They pull the skin from my arm pit out giving me an honest to goodness "webbed" arm pit, which most would agree is neither practical or attractive. This "cording" has greatly compromised the range of motion in my arm, and honestly the stretches I have been doing haven't been helping, and my symptoms have only gotten worse.

There isn't a lot of information out there on this syndrome, but it does look like it is fairly common in situations where lymph node(s) are removed from the under arm area. (You think they would have warned me about it?). From what I can see, it looks like this syndrome usually resolves itself, anywhere from days to years down the road, and there appears to be debate on how to best treat it. Some say specialized physical therapy several times a week is beneficial... some say that having a therapist "snap" or break the cords is beneficial (sounds about as pleasant as bathing a cat)... and some say to do nothing other than normal stretching and it will eventually resolve on its own.

Well, I called my surgeon's team about this symptom (and a couple other minor annoyances I've been experiencing) last week, and I got the impression they consider themselves done with me, and any issues I may be having I need to deal with my plastic surgeon (even though he hasn't really done anything for me other then close up after surgery). We actually have an appointment with my plastic surgeon on Wednesday, so I guess I won't have to wait too long to have my symptom(s) addressed.

Speaking of Wednesday, we will be heading down to Rochester tomorrow(Tuesday) for Wednesday appointments. Our first appointment will be with the plastic surgeon. I'm guessing this appointment will be for discussing how to best work reconstruction back into the treatment schedule. Oh, and to address my impressive "webbed" armpit. :-)

In the afternoon, we will have an appointment with Oncology to discuss the results of additional pathology they have done on my cancer since surgery and to set up a treatment plan. I haven't decided if I'm excited or nervous for this appointment. Maybe a bit of both? Excited to get the next phase started and nervous to actually open the "Chemo" chapter of this journey.

Thankful

Once again, we were the recipients of extraordinary generosity. Yesterday, we attended yet another benefit to help lessen the additional financial burden that comes with our situation.  Once again, it was humbling to see the willingness of everyone to help and attend... we are so thankful!

Yesterday I enjoyed seeing a lot of people that I haven't seen since we moved. I also met some new people (thank you for supporting me, even though you don't know me). We were surprised to show up and find that so many family members had traveled from hours away to attend and help out. And I had the pleasure of visiting with some dear friends. I know I have the best friends a girl could possibly have. Friends that have given of so much over the past few months to lessen my burden. Dear friends who worked so hard in organizing yesterdays event. Friends who showed up to support me and give me hugs! I can't even think of the right word to describe how I feel... but blessed and thankful is about as close as I can get, but it is more then that.

It's hard to imagine that just a couple of short months ago, I set foot on a journey I knew would be hard. A journey I started with tears in my eyes, a heavy weight in my heart and horribly scary thoughts running through my mind. I never imagined that this journey would also entail as many blessings as we have seen. It almost seems counter intuitive to be going thru cancer and yet being able to lay my head down on my pillow every night with so much to be thankful for and feeling so blessed at the end of my day.

I'm not very good at memorizing scripture, but at the beginning of this journey there were a couple of Bible verses that kept running thru my head. One of these was Romans 8:28 which reads "And we know that in all things God works for the good of those who love him, who have been called according to his purpose.". I wanted so much to claim this verse and I finally got to the point where I did, in faith. I didn't doubt God's ability to work good from a bad situation. I didn't doubt that I love God. I doubted that I could be called to God's purpose. Did I really have anything to offer that could be used for God's purpose. I mean God is a big God. What could I possibly bring to the table for His purpose? I wanted to believe I was called, I really wanted to be called, but honestly, I felt too insignificant and unworthy to be called.

The further I've gotten into this journey, the more I realize how selfish my interpretation of Romans 8:28 has been my entire life. God doesn't promise that just because I'm a Christian He will wave his magic wand over my bad situations and "POOF", it's happily ever after. His promise is He will work "all things" for the good of those who love him. Now I'm not a theologian, so I may be way off base, but I am starting to see that God working all things together for good is working the totality of ALL situations. Not just mine, not just yours, but everybody's situations together. So an individual situation may turn out good, bad, or somewhere in between. But we are promised that all of these situations are orchestrated together by God to make the overall picture good.

As believers, what should be our purpose? To bring glory to God! So even if our personal situation has a sad or tragic ending, that ending will be used by God in his orchestrated plan to bring Him glory, which is good. This makes us called according to God's purpose... serving as an instrument to bring Him glory. Each one of us are singular instruments, that alone, may not sound all the great, but in totality with God's plan and all His other instruments, a beauty and goodness is orchestrated to bring glory to God.

Church Benefit

It is a very humbling experience to be the recipient of people's extraordinary generosity... generosity so encompassing that saying "Thank You" just doesn't sound like enough. I sat back last night at the benefit our church put on to support us and watched as hundreds of people came together and supported me and my family in this hard time. From the beautifully decorated tables, delicious food (and all that went into preparing and serving it), clean up, and silent auction/raffle table... to all the people who stopped by to eat.... each and everyone of you played a essential part in showing us what I feel is a reflection of Christ's love. It truly was an overwhelming experience, one that I will never be able to repay in my lifetime.

One thing I think this whole experience has taught me is the power EACH one of us plays in carrying other people thru tough times. I have often felt in the past that what I have to offer others is so little, that often I have not helped when I should have. The last couple of months has shown me that if each one of us do what we can to help others (no matter how big or small), it all adds up incredibly. God orchestrates each "loaf" and "fish" that each person willingly shares to meet all needs bountifully. It has opened my eyes and I pray they stay open, so I can pay forward what I can in the future.

So to all who were involved in last night's benefit. Thank you! You gave of your time, your money, your resources and your heart. I owe my thanks to you in so many ways. Thank you for supporting me and my family like you did and for helping to carrying us thru this time.

After Surgery...

Well, today is one week post surgery, and I must say I did not think I would be feeling this good! I have not taken my prescription pain meds for over two days and am relatively comfortable. I just got my last drain taken out and it is wonderful to not have tubes to take care of and worry about the kids grabbing.

I will summarize the last week and a half.

Last Thursday we met with my surgeon and plastic surgeon's teams, just to make sure we all were on the same page with what to expect for surgery. Then we went over to the hospital and got some radioactive injections, so they would be better able to find the lymph nodes during surgery.

We were at the hospital bright and early Friday morning. We met a couple who is a few years into a similar situation and had some prayer time. My husband and two of my brothers kept me company while I was waiting for surgery. Then they took me back to preop, gave me some preemptive pain medication and a few shots in the back to deaden my chest nerves for up to two days. I think it was about 10:30 when I got into the operating room. The next thing I knew, I was waking up and it was 5:00.

Going into surgery, the plan was to do immediate reconstruction, but unfortunately that was not possible. They found cancer so close to the skin layer (they said they have never seen it that close without seeing symptoms of it on the skin), that they ended up removing an area of skin. Since the skin was thinned out so much and had additional wounding to heal up, the plastic surgeon decided it would be best to delay reconstruction.

I spent the night in the hospital and was discharged around 2:00 p.m. on Saturday. The next few days I spent mostly lounging on the couch or sleeping in bed at my brother's house. I had very little pain until Tuesday afternoon during one of our drain tube cleaning sessions and felt this intense burning pain that wrapped from underneath my arm and around my back. It literally felt like my back was in flames for about 15 minutes. I quickly took a pain pill and waited for it to kick in and then we called the surgeon's team. We were told that more then likely, it was an inflamed nerve that the drain tube was irritating. This pain continued to happen every time we tried to clean the drain. This same day we got the call from genetics saying my genes testing showed that I did not have the brca-1 or brca-2 gene mutations. This is excellent news, for myself and many of my first degree relatives!

Wednesday morning we woke up and packed our car for home, and then headed to Mayo for our post operative check. The surgeon was extremely pleased with how well the incisions were healing and I got one of my two drains removed. They also told us we could be done "stripping" the remaining drain tube as that was causing excruciating pain and they felt the drain was maintain well enough on its own. They were also very pleased with the pathology results. All of the margins on the cancer were excellent! My "worse" margin was more then double of what they consider a good margin to be. My final lymph node tests came back with no indication of cancer. With all the information gathered thru surgery, they have ranked my cancer as Stage 1, which has an excellent prognosis! We were so happy we had a celebratory lunch at Red Lobster on the way home. We had a lot of reasons to celebrate. We arrived home Wednesday evening.

It is so nice to be home, but it is hard to be Mom, yet not be able to "do" Mom things. My oldest had a hard time with us being gone and missed us very much. She informed me "Mom, I missed you so much, that I just went in your closet and cried. You've been gone too long. Don't ever leave me again!" all thru a flood of tears. Our next oldest has been getting tummy aches (what happens when he is worried) and came home from school yesterday and ran to his room and bawled. He said he didn't know why he was so sad, but just needed to cry. Our little ones are having a hard time with not being able to be "up" with Mommy. But I guess all this is part of what we have to go thru.

We have to return to Mayo in a couple of weeks to meet with Oncology and set up any additional treatment plans which may be needed.

Courage...

When we told our oldest, who is nine years old, about the operation I will be undergoing, she got big tears in her eyes and said,"How do big people get so brave? I'm scared to get a shot." I explained to her that I am scared, but choosing not to have the surgery was scarier then having the surgery. I don't feel very brave. Being brave is defined by operating with courage. Courage is the ability to face difficulty without fear. I am afraid.



I know fear is not a good thing. It makes us act and speak in ways that hurt. I have seen this in the past week. I am short with the kids and irritable and angry with my husband, and for no other explainable reason, other then I'm afraid.



As a Christian, I know my fear does not come from God, but what I haven't figured out is how to get rid of it. I've also decided I'm not afraid of cancer, I'm afraid of change. I am such a routine and goal driven person, that the idea of everything changing has driving fear into me. I'm going to feel different, look different and have to totally change the role I play as mother, wife and friend. I am scared this experience is going to change who I am.



I know I can't let fear stay, or it will change who I am. This is one of the parts of my experience where I do have a choice. I can choose to be afraid, and fall victim, not to cancer, but to fear. Or I can choose to hand my fear over to the only place it will be destroyed (the hands of God) and I know He can turn my fear into hope. But I have to make the choice to give up my fear. It is MY choice.

Meetings with Oncology

Today, our first appointment was with Oncology. The Oncologist just affirmed that the decision to have surgery first is the best one, in his opinion. He said that there are certain cases where pre-surgery chemotherapy is probably the best, but with our case, he feels surgery is best. Being that I have at least two and possibly three different types of cancer going on, the chemotherapy treatment would leave one type of cancer not being as targeted by the chemotherapy. If we wanted to pursue pre-surgery chemotherapy, he would pick the regime to treat the HER2+ cancer, being that it is the most aggressive type I have going on. But during the time frame (around 5 months) we would be doing pre-surgery chemotherapy, there is the risk the non HER2+ cancer could progress, compromising my prognosis. I am more comfortable taking the risk that possibly the lymph node biopsy was wrong, then I am waiting 5 months doing chemotherapy and hoping some of my cancer isn't spreading.

At this appointment, we also ran thru what the probable chemotherapy regime could be for me. It looks tough. It looks like I will probably be doing a couple different "chemotherapy" drugs (approx. 5 months), a year of a HER2 specific drug, plus up to five years of a hormone receptor drug. A lot of the side effects of these drugs are terrifying, but I know they have to be done. One day at a time...

Our second appointment was with radiation oncology. We went over some of the post surgery scenarios that may require me to also need radiation. With the information we have now, it looks fairly unlikely I will need radiation. I would be just fine with never having to visit the radiation oncology department again! :-)

We also met with a genetic counselor. Due to the fact I have bilateral breast cancer at such a "young" age, there is a greater then 10% chance that I may have one of the BRCA gene mutations. We feel it would be wise to test for this gene mutation to better know how to deal with my case, and to hopefully better inform our children and other first degree relatives of certain medical conditions to screen for. If I indeed have one of these gene mutations, there may be a significantly elevated risk of me also developing ovarian cancer, and we could start screening or take preventive measures now.

We are proceeding with our scheduled surgery date of January 29th.