Thursday, October 21, 2010

Round 3 Update

The good news first:

As of today, I am officially past the halfway point in my chemo treatment. I did a little happy dance this morning and ate some brownies to celebrate.

Things have been going reasonably well. The first round of chemo was pretty tough, I won't lie. The hardest part was probably the fear of the unknown, both of what the primary treatment would do to me, and also of how the secondary medications (the long list of prescriptions they gave me to help with the side effects) would affect me. I was basically a giant chemistry experiment for about 11 days. I got dehydrated, could not eat, and went in two times for additional IV fluids (one of which was at the ER when the mix of insomnia/dehydration/anti-nausea/anti-biotics/steroids caused me to go a little crazy). The oncologist and I agreed to stop all secondary medications, and the remaining 10 days of that cycle got progressively better.

For the second round, I was prescribed different anti-nausea medications which I decided to not take unless absolutely necessary. I was very relieved to find that my body was able to handle the chemo just fine on its own! I had a few days of (TMI ALERT!!) constipation followed by a few days of mild diarrhea, and I needed a little extra rest for the first half of the cycle, but otherwise I didn't have any of the short term negative side effects.

The long term side effects are still present. I lost my hair on day 14 of round 1, but I have to admit that was not traumatic for me at all. I have enjoyed not having to wash/dry/brush it (I didn't style/color/curl it to begin with), the only down side is that it is like wearing a sign that screams "I'M SICK!" I am thankful that I haven't lost my eyebrows or lashes yet. I don't wear make-up, so I was going to look a little odd without them. I have not had any changes in my nails, skin, or mouth. I can feel a little difference in my heart, and a big difference in my energy level. I have also been experiencing "chemo brain," which is hard to describe but makes me feel like my brain has turned to mush -- calling things the wrong name, taking an extra couple of seconds to answer memory recall type questions, forgetting things that I would normally have no trouble remembering. As a homeschooling mom, this has been hard. Luckily, my boys were already used to me calling them the wrong name.

The emotional side effects are a little harder to quantify. I joke that this has been harder emotionally on my mom than it has been on me, but I do have my moments. There is a lot of guilt. Since this blog is public, that is all I really feel comfortable sharing at this point.

Despite all of that, the second round went MUCH, much better. I felt well enough to have friends over, to go on a family hike, and to go with my son on his class field trip.

The third round has been a repeat of the second, and in fact the transition from "not feeling so great" to "feeling better" happened within an hour of when it did during round two. My blood cell counts have been rebounding nicely, I have been staying on top of my hydration, and I am optimistic about the last 3 treatments.

The great news next:

I bet you were expecting bad news next, but today I am only sharing good news and great news. :)

The great news is that the chemo is definitely working! I had an appointment earlier today with the breast cancer doctor, and she confirmed that the tumor is considerably smaller. When she measured on the ultrasound today, both measurements were a THIRD of what they were in July. Her exact words were that I am "having phenomenal results" that are what she hoped she would see at this point. Not EXPECTED to see, but HOPED to see. And believe me when I say that this doctor says exactly what she means and does not sugar coat, ha ha! She also used the word "amazing" when she could not feel any lumps in my lymph nodes (which the oncologist could also not feel at my last exam).

I meet with her again in early January to plan my surgery, something she and I currently do not see eye to eye on. In the mean time I am going to speak with as many women as possible who have had surgery for breast cancer, both with and without reconstruction.

I am very bad about sending thank you notes (shamefully so!!), but I do want to take a minute and thank those who have brightened my day with a card, kept my head warm with a lovingly made hat, and brought over food for us. Your kindness has helped keep my spirits up and reminded me of how much I am loved. Thank you to everyone who is praying for my family, who is sending kind thoughts our way, and who is sharing my story with other women who think they are too young for breast cancer -- please continue to do so!

Thursday, September 23, 2010

Round 2 Update

Just a quick update... I can't believe it has been 2 weeks since I last posted, time seems to be going by so quickly.

I am now 4 days into my second round of chemo. I am very tired and spend a lot of time resting, but all things considered I am doing well.

I did receive some very encouraging news on Monday, the oncologist confirmed that the tumor is shrinking, it is softer, and the edges are not as well defined. In short -- the chemo is working.

I will try to update more frequently, thank you for keeping us in your thoughts and prayers.

Thursday, September 9, 2010

I'm still here... just sort of different.

I have so much to say, I don't even know where to start. I can't even start at the beginning because I don't remember it. Appearantly chemo drugs will do that to you. Chemo drugs can really mess with your mind. I didn't anticipate that.

The last 48 hours have been... interesting. My mind has been exposed to all sorts of new ideas about life, and fighting off death (seven times), and perfect bodies, and world peace, and how to achieve the impossible. You probably just laughed and told your computer that I was crazy. Don't worry, my oncologist had the same reaction but was more polite and only discussed it quietly on the phone as he scheduled my consultation with the doctor at the inpatient psych ward.

I was smart enough not to say too much to the emergency room nurses, though. I know they deal with all sorts of people who see what I have seen and most of them are either strung out on who-knows-what or actually are crazy.

But rest asurred, I am not. I am still very much sane, happy and safe in my home with my loving husband and adorable children. I have all of these words just bursting inside me though, and this little blogspot just does not have enough 1s and 0s to fit my needs. So I have decided that.....

I am going to write a book.

Now every single one of you who know me in person must be terrified right now because that is not something I would do. I am far too practical, and far too logical, and far too mathmatically-minded (not to mention far too busy!) to spend countless hours typing in words. BUT!!! you do not know me while I am on mind altering medications, and it has been brought to my attention that THAT side of my brain has a lot to say.

So stay tuned, my friends, because my book is coming. It probably won't be soon though, because first I must sleep (which I have not done since Tuesday morning), and then I must spend time with my family because I have missed them so very much while I was sleeping last week. And then of course it will probably take a while to actually type the thing. I wonder how long that normally takes. I will need to ask some of my friends in the publishing world. <-- This is my first attempt at being funny in print, because of course nobody cool enough to be in the "publishing world" would be friends with a math nerd like me. OH! I actually do know someone, my son's Latin teacher just finished writing a book, I should ask her how long it takes. (OK, this is an inside joke for my local friends, our dear friend recently finished writing her book after ten years, sent it to an editor who thinks it is amazing, and we are all so excited and proud!)

If anyone who reads this blog happens to be in the publishing world and wants to offer me free advice, it's really not necessary. This isn't going to be one of those REAL books that people buy in stores and talk about at work. It probably won't even be one of those books my high school friends will buy out of pity so they can own "That cute little book Colleen wrote when she was messed up on all those chemo meds, Bless her heart." It is going to be a book about me, what I think about things, and what I think about when I have 216 consecutive hours of deep thought. And you never know, I might just have the answers to all of those problems keeping you awake at night.

P.S. Honestly, you do not need to worry about me. Over the past 2 days they have given me a wide range of tests that have shown no signs of infection, my white blood cell counts have rebounded nicely, I am off of all meds, and they are adjusting my nausea and pain meds for the next round of chemo scheduled 9/20 (since I had NO pain or nausea at all the first round). I am in a very good place physically, emotionally, and spiritually right now, and for a breast cancer patient that is pretty great. XOXOXO

Wednesday, September 8, 2010

Chemo Reality

Reality is starting to sink in.

I knew chemo was going to be tough, I researched as much as I could before it started and was ready for all of the expected physical side effects. I have a collection of products to help with dry mouth and nausea and itchy scalp. We hired nannies to care for the kids while Jason is at work. My mom was here for the first few days after chemo. I paid all of my online bills in advance. I stocked my pantry. I thought I was prepared.

I was not prepared for being gone for a whole week. That is what it feels like. I have been sleeping about 20 hours per day for the last 7 days, and when I am awake I am in a fog -- there are a couple of days I don't even remember. It is such a strange feeling, as a homeschooling mom I normally mentally track about 100 different details but at this moment I can't even tell you what my kids ate for lunch today. I haven't left my house in 3 days, and I didn't leave my bedroom on Monday because I could barely walk.

Along with the physical fatigue and mental fog, my body also stopped producing saliva. I have never really given much thought to saliva, but trying to eat a saltine cracker without it sure made me miss it. I was constantly sipping water to keep my mouth from drying out, but I have not been able to eat anything since Sunday at lunch. I haven't had any nausea, but just physically could. not. eat.

My mom was worried about me and flew back up on Monday evening. She took me in to the doctor today, they suspect I have an infection somewhere (I have had bouts of fever that my whole body gets drenched in sweat) and drew 3 vials and 5 large syringes of blood to have cultured, along with a urine culture (it was very bloody) and chest x-ray. We should get the results in a couple of days, but they have put me on a strong antibiotic in the meantime. It is the same antibiotic I was on for the third round of treating my antibiotic-resistant mastitis 2 years ago, and I know how it affects me -- joint pain and fatigue, just what I need more of. They also confirmed that I was dehydrated and gave me a bag of fluids. I have been drinking lots of water and even some Gatorade, but not enough to stay caught up.

I wish I could tell you that I was doing great, and I guess if I dig deep enough for a silver lining I can add that I have not had any nausea or mouth sores (though I am taking 3 different anti-nausea meds, and sores probably require saliva to form). I was finally able to eat something tonight -- a few bites of mashed potatoes while at the doctor, and a few bites of pasta stars at home. It was pretty exciting. My mom was proud.

I am not really sure what to expect going forward. On one hand I now realize that dry mouth is normal, but complete lack of saliva is not. Fatigue is normal, but sleeping 20 hours every day is not. I can keep a better eye on these things now that I know the difference. On the other hand, I have read that some of the effects of chemo are cumulative, meaning they get worse as treatment goes on. I can't really plan for these things.

My dad is arriving later today to take care of me for a while. After what happened on Sunday and Monday, my moms and dads decided that I need full time care and they are rearranging their lives to take turns being here, to be sure I stay on top of my meds, to drive me to doctor appointments, and to help with the kids. It is a strange thing to need to be taken care of by your parents at 33 years old, a time when some of my friends are starting to take care of their aging parents.

Jason has been great all through this, but he has to go to work during the day, and he has to do double duty in the evening. It has been hard on him practically being a single parent. I'm glad we chose to keep traditional wedding vows, he's getting a good dose of better/worse, richer/poorer, sickness/health all at once.

I think my boys are doing ok, though I only see them for a couple of hours each day. I am hoping that I will feel a little better today and spend some time with them. The nannies we hired are great, but they just don't know my boys like I do. I am trying very hard to fight off the guilt of how chemo is affecting their lives.

I guess that is about it for now. It is 5 in the morning, but all things considered I don't have the right to complain about not being able to sleep.

Wednesday, September 1, 2010

Treatment Day 3: Quick Update

Just a quick update... I am doing ok. I am very fatigued, but so far no nausea or other side effects. I am hungry and worn out, surprisingly similar to the first trimester of pregnancy (calm down! I'm not pregnant! ha ha).

Thank you for the messages and cards and notes, it helps keep my spirits up to read them. My mom is staying with us for a few days to tend to me and we have hired nannies to help with the kids and around the house. Yesterday was Jason's last day of working two jobs, and the kids are looking forward to their classes starting up next week (Ronan will be in preschool 5 days, older 3 will attend co-op classes they have been taking for 3 years, and Brayton takes a couple of online classes).

So at this moment, all is well.

Lesson for today: sometimes life hands you lemons. What you choose to make with those lemons is up to you.

Monday, August 30, 2010

Treatment Day One: Better Than I Anticipated

Today was the first day of chemo, and it really wasn't bad at all. Boring - YES! Painful - NO!

Last Monday I had a medical port surgically inserted ( this one ). It is definitely strange seeing it under the skin just below my collar bone, but it means that each time I go in for treatment or fluids they can insert the needle into the port and have direct access to my vena cava, eliminating the need for a new IV each time.

Today I had 7 different medications infused continuously over a span of about 4 hours. One helps the nausea, two of them attack cells currently in mitosis (this is why hair/nails/mouth are also affected), one is a cancer cell fighter, one is a steroid to boost my bone marrow to overproduce white blood cells that are destroyed by the other medicine, one prevents allergic reactions, and one helps calm my stomach so when I get sick the acid won't burn.

I go back in tomorrow for an injection of another steroid, and I will check in with the oncologist every few days to run labs and check my fluid levels, adjusting as needed. I will go in for a repeat scan halfway through chemo to be sure it is working, and they may change my treatment plan based on that.

My hair will fall out later this week. I am actually not bothered by this. I am definitely not what some would call a "girly-girl". I see hair as something to keep my head warm, and hate spending time and money on it. I bought a wig last week and I admit it was nice to just grab it off the stand and be ready to go, ha ha. I also have a hat and a scarf, and I am not afraid of being bald, so the next time you see me I may look a little different (I will also lose eyebrows and leg hair). Once my hair starts to fall out, I am going to let the boys cut it with the buzz trimmers. They will get a kick out of that!

As of now, the plan is to have 6 rounds of chemo that begin every 3 weeks, but this may change. That puts it ending in mid-December. After that I will have surgery to remove both breasts, and will most likely not do a breast reconstruction. About a month after the surgery I will have radiation daily for 6 weeks.

I am at peace with my treatment plan. Obviously I would rather NOT be going through all of this, but unfortunately the tumor is 8 cm by 6 cm by 5 cm (that is 3" by 2.5" by 2" for my American friends *grin* ) and I no longer have enough time to try any alternative treatment options.

A couple of friends have asked me to share the symptoms I first noticed (which I will have to do next time), because 32 year old women who have recently nursed 5 children and do not have ANY risk factors are not supposed to get breast cancer. Every woman I have told of my diagnosis has gotten that same look in her eyes -- the one that says "Oh my goodness, if it can happen to HER it can happen to ME." And they are right. This can happen to anyone, and each of the doctors who told me that there was no way it could be breast cancer, that there was no need for further testing, that it would be fine to wait 6 months and see what happens, were wrong. Period. Thankfully I listened to my instinct and went to a different doctor who actually listened to my concerns and agreed that the large tumor he could feel was worth investigating. He referred me to a breast cancer specialist (a great one!), and the team I have in my corner now is awesome.

Lesson for today: Listen to and trust your body. Doctors are not bad people, but they do not know your body like you do. If your doctor does not listen to ALL of your concerns and address them until you feel the issue has been resolved, find a doctor who will.

The Wait Is Almost Over

On September 9 of last year I discovered I had breast cancer, and for the 355 days since then I've been waiting for someone to do something about it.

Two things you should know about me:
1. I am not a patient person.
2. I do not like needing other people to do things for me.

The waiting has been the hardest part. Waiting for appointments, waiting for doctors to return from vacation, waiting for new symptoms to show up, waiting for someone to take my concerns seriously. Always waiting.

Later today I begin my first round of chemotherapy treatment. I wouldn't exactly say I am looking forward to it, but I feel like I am FINALLY doing something to get this cancer out of me.

All of this waiting has been good for me in some ways. I have been slowly marking things off my massive to do list, I have been researching, I have been cleaning, I have been reading, I have been thinking. I am tired.

I will update when I am able to. In the mean time, take time today to do something that you've been meaning to do but haven't. Whatever it is, just go do it. It will make you feel better. :)

Friday, July 30, 2010

Bad News, Good News, and More

Tradition says I should give you the bad news first.

The expected bad news is that the tumor in my left breast is about 6 cm (that is about 2.5 inches, or 6 of the base 10 block units, or the light blue MathUSee block). It was 2 cm in October, 4 cm in March (back when my former doctor was still telling me this couldn't be cancer), so 6 cm now didn't surprise me.

The other bad news is that it has spread to the cluster of lymph nodes closest to that breast. The MRI wasn't conclusive on how many lymph nodes are affected, but I officially have Stage 3A Breast Cancer.

Now for the good news. :)

The bone scan was clear. This was a HUGE relief for me, as I know that once cancer affects the bone it is a much harder fight.

The rest of the MRI, the chest x-ray, and the CT scan of my chest and abdomen were clear.

The mammogram of my right breast was clear. This was another huge relief because my previous doctor would not approve a screening mammogram because it "wasn't worth the radiation risk to women under 35".

Overall, I am relieved with the results. I had hoped that it hadn't spread to my lymph nodes yet, but at least it hasn't gotten beyond that.

Then came the discussion about chemotherapy. That part is pretty much all bad news. We discussed the various drugs involved, the side effects of each of them, and the drugs I can take to counteract them (along with the side effects of those). Due to my young age, size of the tumor, and type of the tumor, avoiding chemo is not a realistic option.

I knew I was going to lose my hair, I didn't know that I might lose my fingernails (and if they don't fall off, they will turn black and brittle). I knew about the mouth sores, I didn't know about the skin burns. I knew it would affect my bone marrow, I didn't know it would affect my heart muscle.

Let's see... what else....

The paperwork said I should avoid pregnancy during treatment. That actually made me laugh out loud. As if! (And since this is a public blog, I will leave it at that, ha ha.)

My veins are not well suited for the abuse of IV chemotherapy. This did not shock me. Another time I may amuse you with stories of my past failed IV attempts. For now it means they will surgically insert a dual port, then they can just plug me in like a machine and not have to do a new IV each time.

I meet with the Radiation Oncologist next week, then I meet with my diagnosing doctor on August 11 to review the recommendations of the other doctors and come up with a game plan. My chemo is tentatively scheduled to start the week of August 16 and will run every 2 or 3 weeks through Thanksgiving. This will be followed by surgery, recovery, then radiation.

Bottom line bad news: The rest of 2010 pretty much sucks.

Bottom line good news: I have a husband who meant his vows, five incredible boys who are healthy, family and friends who have offered help, and people all over the world praying for me. And for all of these things, I am thankful.


It's Friday.

As a student I looked forward to Friday because there was no homework. As a teacher I looked forward to Friday because there were no meetings. As a stay at home mom I looked forward to Friday because we met friends for dinner. As a homeschool mom I look forward to Friday because we have our lightest day and clean the house.

The last few Fridays have been different, though.

Two Fridays ago I had a breast biopsy. Most people would not be looking forward to this, but after nearly a year of having various symptoms and being told over and over that "yes this is strange, but it is probably fine," I was finally beginning to get some answers. Obviously cancer was NOT the answer I was hoping to get, but I was not shocked. When my new doctor said "I'm worried this is cancer" it was chilling because that is the exact thing I said to my old doctor last September when my symptoms began.

Last Friday I spent 9 hours at a local hospital undergoing a whole series of tests to asses the extent of the cancer so a treatment plan could be developed. I looked forward to these tests so that I could have a picture of my prognosis, work on researching my options, and know what kind of help I will need going forward.

On this Friday, I am meeting with my oncologist (wow, there is a sentence I never thought I would write). We will go over all of the test results and talk about my treatment options. There are a couple of spots that have me worried, but overall I am very hopeful. My appointment is not until later this afternoon, I will update here after dinner.

Until then... TGIF!

Tuesday, July 27, 2010


Hello everyone,

I am sorry I haven't updated in a few days, but I have been super busy trying to get everything in order before treatment begins. I am trying to think of everything that will need to be done in the next 6 months so that we can take care of it now (in theory giving me peace of mind and less to worry about during treatment, but completely stressing me out in the mean time). Oil changes, dentist visits, AC repair, homeschool filing, household maintenace, as well as stocking up on toiletries, cleaning supplies, food staples... I have several pages worth of lists going.

There are sad things to think about as well. I have 6 years worth of digital photos to organize, upload, print, caption, and store. We have scheduled family portraits before I lose my hair (or breasts, or more). I want to get video of me with each boy in case this doesn't turn out as well as we anticipate. There are also many things I handle that need to be written down in case someone needs to take over (I guarantee nobody else in my house knows how often toothbrushes need to be replaced, or what store sells which brand of underwear, or when they are due for their next checkups, or how certain paperwork needs to be filed, or where we keep the superglue).

And then there is all the research! I am both amazed and overwhelmed at all of the treatment options. I have had to put all research on hold until we have some answers from all of the testing. So much depends on the size and type and quantity of the tumors! I have spoken with several women who have been through this, and it has been very encouraging. In addition to the practical tips (ice chips 15 minutes before chemo, lint roller for the tiny itchy hairs, best websites for scarves), it has given me renewed hope that this is beatable. I have to beat this. Losing is not an option.

I have read about the effects of "chemo brain," but I am starting to think there is something to be said for "planning for cancer brain." Please let this be a lesson to you -- because as horrible as it is to think about, this could happen to anyone at any time. What can you do NOW that will make things easier if you are ever faced with a serious health problem, or a life changing accident, or worse? It does make me sad to think about, but it makes me even more sad to think about my family trying to figure it all out on their own.

My next appointment is with the oncologist on Friday. We will go over all of the testing results and map out a plan for chemo. Then that will give me a whole new set of things to plan...............

Friday, July 23, 2010

No Bad News = Good News, Right?

Today I had appointments for a bone scan, MRI, CT scan, chest x-ray, EKG, blood work, mammogram, and pedicure (which technically wasn't a scheduled appointment but seemed like a nice, relaxing break on my way home).

Of course they are not allowed to tell me about any of the results, but I was able to see the bone scan as she was doing it and did not notice any places that jumped out as areas of concern.

I will get all of the official results when I meet with the oncologist next Friday, but the way I see it -- I did not receive any BAD news, and my toes look pretty, so it must have been a GOOD news kind of day.

I had a lot of time to think today; sitting inside a machine for 40 minutes unable to move was not altogether unenjoyable, I don't often get that long of a stretch to sit quietly and ponder. I have a lot to say about what I am going through (none of you who know me are shocked about this LOL), but for now I am headed to bed as it has been a very long day.

Thank you all for the well wishes and prayers. I have enjoyed reading through them, it is comforting to know we have so many people standing behind us through this fight.

Wednesday, July 21, 2010

My First Blog Post

Welcome to my first venture into the blogosphere. :)

The blog name stems from my fear that having a blog is like letting the whole world into your home. It is also formed from the first letters of my boys' names -- B-G-D-R-W. I originally set up this blog as a place to share information about our crazy days of homeschooling, the adventures we undertake, perhaps some organizational tips.

Unfortunately, our plans and adventures have been put on hold as I have been diagnosed with breast cancer.

I have been slowly sharing this news with family and friends, but I am finding that individual phone calls are not an efficient way to share information with all of those who want to be informed. I am hoping this blog will serve as a place to share information, to easily ask for help, to connect those who are willing to pray for us, and also to keep all of your messages to us in one place. Many of you know me from online, please understand that I will not be visiting message boards or facebook for a while, so if you send me a message there I will not receive it.

We have been very thankful for those of you who have already offered help, and we definitely plan to ask for more. Right now it is hard to say exactly what or when I will need help, but I do know that we will need help to get through this. My next appointment is on Friday when they are doing more than a dozen different tests and scans to see if the cancer has spread. When those results come back I will meet with the oncologist and radiologist to come up with a treatment plan. My diagnosing doctor anticipates I will begin chemotherapy in the next couple of weeks, followed by surgery and radiation.

I have set up this blog in a way that can be viewed publicly (I think -- please let me know if you see soemthing I need to fix), so please feel free to pass the link on to others who may want to stay updated. If you are inclined to pray, please do so. I am blessed with friends from many different backgrounds and belief systems, and I absolutely believe in the power of prayer in all forms.

I will post more information as I am able to, and my friend Dawn has offered to help when I am not.

(((((HUGS))))) to all of you.