{hair be damned}

My last post felt like a quick purging of information from my appointments with my oncologists, which it probably was.  I haven’t had time to sit and type like I want to, like I was able to last time.  I seem to have a lot more going on this time so I’m not able to sit, but at the same time I am crazy busy with kids, going back to school, coaching, being mom and wife and just dealing so it keeps me busy and distracted.  In my last post I talked about my soul being crushed and my breaking point.  I said finding out my treatment plan was my breaking point and when my aunt mentioned “soul crushing” that hit the nail on the head. It was the same thing as finding my breaking point.  

I had a hard emotional week after two days of appointments with my oncologists. One of the hardest things for me to wrap my head around was the thought of losing my hair.  Before we met with my oncologist I had been doing a little reading online about chemo and hair loss.  The first site I clicked on was the Mayo Clinic.  I try not to read too much online because there is just way too much information out there and you never know when you will come across a not so reputable site.  So I try to stick with just a few, www.mayoclinic.org, www.breastcancer.org, and www.webmd.com. So when I clicked on an article on the Mayo Clinic’s site regarding chemotherapy and hair loss I read this opening caption, “Plan to use your energy staying healthy rather than worrying about how you look.” F You, Mayo Clinic. That had to have been written by somebody that has never lost their hair due to cancer treatment or an insensitive man. A woman, okay many women, are going to worry about what they look like when they are bald, when they have lost their hair against their will.  You can’t just tell them to not worry about how they look. If bald was an awesome look for a woman, more women would choose to go bald because believe me blow drying and fixing your hair everyday is sometimes a pain in the ass. All those days I had a bad hair day and said, “I should just shave my head!” is coming back to bite me in the ass.  

I’ve struggled with losing my hair for several reasons. One, I get pissed at myself because I’m having a hard time with it, it’s hair, it will grow back, damn it!  Two, very simply, I’m going to lose my hair. I believe there are very few women that wouldn’t find this hard to think about.  Vain or not, our hair is a part of our femininity. We wouldn’t worry about regular haircuts, highlights, coloring our greys (actually, I’ve never done either of those), or freak out over a bad hair day if our hair didn’t matter.  It. Matters. For some people less than others, I realize that, but it still matters. In the middle of it the reality of losing my hair is devastating to me, maybe more so than losing my natural boobs. My boobs I could cover up, after my mastectomy nobody would look at me and think, “Oh, she’s a cancer patient.” Bald head, during and well after chemo, people will look at me and know, “Oh, she’s a cancer patient.” After treatment, I will still look like a cancer patient.  That pisses me off. I haven’t been sick with Cancer 2.0 and now with chemo I will be sick and I will look sick. That pisses me off. The thought of losing my hair is devastating to me. That pisses me off.  I want to be stronger than that.  I want to not care. I want to have a head shaving party and celebrate the glory of my bald head. I’m not strong enough to do that and that pisses me off.  I want to be that girl, but I’m not.  I’m the girl that is mourning the loss of her hair every step of the way.  I’m the girl that is tearing up while typing this because I’m afraid that I might not shave my head before I see my hair start to fall out.  I’m the girl that left her radiation oncology appointment and started calling and walking into salons until I found somebody that could do a walk-in haircut because I couldn’t stand the thought of going home and seeing my long hair anymore. I’m the girl that is going to be going way out of my comfort zone to try to embrace my hair loss as a show of strength. I’m the girl that is going to fail to do that on more than one occasion. BUT, as devastating as it still feels, at the same time I have wrapped my head around it a bit...and that, my friends, is a small victory for me and a loss for cancer. 

A week and a day after I chopped my hair off I had coffee with a friend.  I didn’t feel like going, but I knew I had to catch up with this friend who is also a survivor, one of my biggest cheerleaders, and who has walked this chemo and hair loss walk before me. She gave me an out, she told me we could cancel coffee and I could go home. But, I couldn’t do that because all I wanted to do was hole up at home and that gets me nowhere except feeling down and sad. So I sat, we chatted, she shared, and I started to feel better. She knows and validates my feelings and fears and lets me own them. At the end of our coffee date I was feeling much better and my week started to turn around. Before I left she had a few things to loan me, a wig and some head wraps of various styles.  When I got home I took them out of the bag, one of the head wraps was a pre-tied scarf. I pulled my hair back, put it on and made myself look at my reflection in the mirror. It was hard, but at the same time I looked at myself, sighed, and thought, “Ok, I can do this.” So though I can’t stand the thought of losing my hair, I now feel like I have a relatively firm grasp on the reality of it.  Today I have a hair appointment to get my hair cut again, an even shorter style than it is now. Next Wednesday I have an appointment to get my hair cut again, a pixie cut of some sort.  Gradual “in between” styles to try some out for ideas when it starts to grow back. I’m not saying I am happy about this or loving this idea or process, but I’m feeling strong enough to do this when even a couple days ago I had planned to cancel the “in between” hair appointments.  

Sometime in between my pixie haircut and my second treatment, I will be getting my head shaved. My goal is to do that before I witness my hair start to fall out. I don't have much control over what is going to be happening to my body, but when I lose my hair I can do on my own terms. That I have control of.

So, in my world...losing my hair + the fear of health problems that I may have in the future due to treatments I am having to hopefully rid myself of cancer = a soul crushing, breaking point kind of week. But, like everything else, this too shall pass, I continue to move forward, I am having far more positive days (with an occasional mix of the blues, but that is okay), and I will probably be better for this journey on the other side. My sister-in-law sent me a message awhile back and said, “I can’t wait to see the person you are on the other side!” You know what? Neither can I.

{the crushing of a soul}

Warning for those grammar police out there.  I am posting this without proofreading it.  I will get to that later. :-)

I was going to start this post with something like, “I had a week that was a roller coster of emotions”, but I immediately stopped and thought to myself, BS, it was an elevator that broke free of its cable and crashed to that floor that doesn’t even have a button to the general public.  The floor below ground that can only be accessed from the service elevator. You know the floor I’m talking about, the one you worry about accidentally hitting the wrong button and the doors are going to open and you are looking down an empty stone corridor like in the horror movies.  Dramatic I know.  Let me first say that everybody handles adversity differently, everybody handles their struggles differently, and somewhere out in the world somebody always has it worse than you do.  I know this. I have felt like I have been pretty positive in facing my second bout with cancer. People comment on this a lot.  I try, I really do, because I know that there are healing qualities in having a positive attitude. Even the first time I was diagnosed I can only remember a handful of days (only individual days, not long stretches) that I was pissed off at the world. A few weeks I discovered my breaking point this time around, finding out my treatment plan.  Like my aunt said in reference to medical issues she has faced in the past...it was soul crushing.

On October 29 we had an appointment with my oncologist. We were hopeful going into this appointment.  We had been told several times that “they” thought I would be able to avoid chemo. So, of course wanting to avoid chemo, we had this scenario in our minds. My oncologist began by going over my pathology reports in depth, explaining every number and testing results...strong positive results for estrogen and progesterone, moderate rate of cancer cell growth, clear margins. She had spent a lot of time considering my “case”,which was a bit out of the norm, and talking to my oncology surgeon. She went onto tell me about scenarios when chemo is recommended, about my situation, and then finished with, “I am inclined to recommend chemo.” Every cancer patient knows damn well this is a possibility, but I think until you actually hear that it doesn’t really hit home.  I just nodded and said, “Ok”, and focused on listening intently and taking in everything she had to say regarding treatment...every three weeks for six cycles, 15 weeks from start to finish, several hour treatments with time beforehand preparing to start treatment. A treatment plan and drugs that aren’t on the aggressive side because my situation doesn’t warrant such aggressive measure.  A “milder” plan that doesn’t have side effects that can cause serious medical problems in the future, but there will be immediate side effects that will go away after treatment.  Side effects that include fatigue, nausea, fluid retention, and hair loss.  Hair. Loss. The one thing that EVERYBODY associates with chemo. I’m going to lose my hair.  Tony asked my oncologist about how long after my first treatment would I start losing my hair, about three weeks.  She said by the time she sees people back for their second treatment they have already started losing their hair and by their third treatment they have usually already shaved their hair off. Then there is the knowledge that chemo drugs are going to be coursing through my veins through a port that will be inserted into my chest with a direct line to my jugular vein (more about this later, at this point it has already been placed). That was October 29th. We were sent home to discuss and decide if we would go ahead and take my oncologist’s recommendation for chemo.  We called the office back within an hour and told them we were going to do it.  Really, what other choice could I make.  Like a friend recently said regarding my upcoming Thursday, “Two days until you make a brave choice that is much bigger than you. You've got four others in that house that need a mom.” Those four others are much bigger than I am and they do need me.  My fears are much smaller than them needing me.

Thursday...our appointment with my radiologist. Like my oncologist she said she felt like she already knew me because there had already been so much discussion and reading of my scans and reports trying to figure out the best treatment route. Her decision was absolutely no question, radiation 4-8 weeks following chemo, five days/week for about six weeks. Another “point” in my week, not a “high point”.  She said preparation for treatments starts two weeks prior to my start date for a CT scan to get an exact picture of my anatomy, heart, lungs, thyroid, lymph nodes, etc.  This is necessary because of the part of my body where I would be receiving radiation and the body parts that would be lucky enough to receive radiation in addition to my breast...my heart, my lung, my thyroid.  Awesome. I asked her if the CT scan would pic up the spot on my aorta in hopes of being able to avoid an additional blast of radiation. She said people are always concerned about the amount of radiation they will be exposed to in various tests and rightfully so, but in this case she said the radiation I will be receiving DAILY is 25x that of a CT scan. So basically being concerned about one additional CT scan really isn’t worth the worry. :-/ And, of course, like with everything there are side effects.  Immediate side effects are fatigue, skin irritation and neuropathy.  Those she wasn’t as concerned about, her major concern was for the lasting effects, the long term effects.  The long term effects because I have a long term, because of my age (which she said she considers my biological age at 30 instead of 42 because of my health and being in shape). Because of the area that will be affected by radiation it can cause damage to my heart, lung, and thyroid. She said the damage to my lung will show up in a CT scan, but most people don’t really notice a change in lung capacity, but do to my activity level I may very well notice. The possibility of cardiac disease is now a risk for me, but that is an unknown until 10, 20, 30 years down the road.  Thyroid issues that would have to be regulated with drugs.  It is also know that radiation can cause new cancers unrelated to the original cancer so I will never be in the clear.  I will always have to be on the watch for changes, not immediate, but down the road, 10, 20, 30 years.   Cosmetic changes, messing with my reconstruction on the left side and because radiation weakens the tissue it is possible that it can’t be surgically fixed because radiated tissue does not heal as well as healthy tissue. But, supposedly the benefits of having the radiation to reduce the risk of breast cancer outweighs all of that. I guess all the science and studies confirms that and we have to trust in our doctor who we are comfortable with and we do trust. That doesn’t make it any easier to swallow and wonder what issues I could face in the future.  

So here is my full treatment plan:
Chemo-every three weeks for six rounds beginning November 20th
Radiation-four to eight weeks following chemo, when I have recovered from chemo, five days/week for about six weeks
Tamoxifen-daily for five to ten years

The only way I can describe it is daunting and overwhelming. Because of the lifestyle I live, pretty healthy and active, I have always felt I would live a very long life, right now I honestly don’t feel that way anymore.  I feel like I am going to have a lot of things thrown on my body that it has to fight against and endure, things that I have no control over and in the long run I hope my body can handle it.  Thankfully I am young, strong, and fit. Right now I try not to think about it, but I’m not going to lie, it’s very hard.  It keeps me awake at night and I have trouble falling asleep. My next six months are weighing on my physically and mentally. Like I have told a couple people today, I’m scared and my heart aches.  It’s soul crushing.

Tomorrow I have a “Chemo Teach” appointment.  I meet with the oncology nurses to hear about yet more side effects and to find out what to expect.  How my treatment days will go, how I may feel during treatments, and what the weeks in between may be like.  I will receive an injection the day after treatments to boost my immune system because my white blood cells will take a beating from the chemo.  I was told being young will play in my favor and my white blood cells may respond okay without the injection.  Only time will tell once I get going with treatment and we see how my body handles it.  So Thursday morning I begin the hardest part of my battle of Cancer 2.0 and getting to the other side.  It isn’t going to be pretty, but I have the support of my family and many amazing people around me.  Thank you to the people in my life for that.  There are important healing qualities in that kind of support.  

I have more random topics to type about, but those will be for a later day.  Homework beckons me and honestly, I’m a bit mentally wore out today. However, I knew I wanted to get something posted before I start my new battle on Thursday.  I quick catchup before my Treatment Room Chronicles begin.

{high points, big points..just points}

Well, it’s been over a month since I posted last, but it seems like far more than a month’s worth of “stuff” has been crammed into the last month.  Since I am way behind on updating on my Cancer 2.0 journey I will try to hit the high points, well lets say the big points because a “high point” is a bit deceiving.  ‘High point” makes me think of something fun and positive.  “Hey, John! What was the high point of your trip to Europe?” “Buying a new car was the high point of my month!” [Which actually happened in my world last month :)]  “The high point of my day was having lunch with my girlfriends.” Those are high points, there haven’t been many Cancer 2.0 high points.  So let’s sit down and catch up, shall we?

Last we spoke we were waiting...waiting on surgery, pathology results, oncology appointments...just waiting. All the waiting for these events has ended.  Surgery on October 13, I had a lumpectomy.  There was a high point on this date, this was the easiest surgery I have ever had.  I was more concerned about coming out of surgery than I was about the actual surgery.  Every surgery I have had it takes me ages to fully wake up and I am nauseous for hours and always end up throwing up.  Every time I have surgery the anesthesiologist changes my “cocktail” to try to make it easier on me and they never quite get it right.  Until this man Dr. Denny came into my life, he is my new favorite man in my surgical life.  He eliminated gasses from my cocktail and hit the nail on the head!  After surgery, I heard them say my name and I started to wake right up, I was with it enough to take long drags through my oxygen mask and I didn’t have one moment of nausea.  The heavens opened up and the sun shone down into my room.  Hallelujah! Easiest surgery ever! Granted the surgery was only about an hour so that made a difference I’m sure, but regardless I was thankful for whatever Dr. Denny mixed up for me.  I also didn’t use a single Rx painkiller, Advil a total of three times did the trick. So freaking easy! So, I had a fantastic surgery experience as far as surgeries go and I have a fantastic new scar to show for it. 

Onto my appointment for the  pathology results...clean margins! The best news we could hear from the lumpectomy.  Okay, that is a high point, too. My doctor was concerned about being able to get enough margins to test.  The issue was that since I have had a mastectomy and have no breast tissue the only margins that were available were skin and muscle.  Originally it looked as if the the tumor was sandwiched between the skin and muscle, but it had actually grown into the muscle a bit.  My doctor ended up having to take a small chunk of muscle to get tissue around to test, but on the skin side really couldn’t get much, but with what she was able to take tested clear which means there were no cancer cells in the surrounding tissue. The tumor was dumbbell shaped {duh. ;-)} and measured 1cm x 4mm at it largest point. A centimeter long seems significant to me, but at least it wasn't a centimeter round. That would not have been a good thing, not that the tumor I had was a good thing, but I think you get what I'm say.  At this appointment we were also given recommended options for the unknown nodule on my aorta.  My doctor said if it were her she would wait a couple months, have another PET scan, and see if there were any changes to the nodule.  The other option...there is a doctor here that said he could get to it with robotic surgery and it would be minimally invasive.  Well, what we found out is that minimally invasive meant collapsing a lung to get to my aorta.  It could weaken my lung and it could weaken my aorta.  We chose Door A, we will wait and have another scan at the end of December.  The risks of the surgery weren’t worth it. If my next scan shows a change then we will have to revisit the surgery option. We both feel comfortable with this course of action.  About a dozen doctors and radiologists looked at my scan and put a lot of thought and consideration into them.  All of them felt that it was benign and waiting to do a scan in a couple months was a safe option. 

That's a short and sweet catch up of a couple things. I think I am just going to leave this post at short and sweet because my next catch up post in my series of Cancer 2.0 points is a blog post all of its own...my treatment plan.  Stay tuned for the post that is everything that is testing my inner cancer ninja these days.