It’s been a while since I’ve posted much of anything. Fell off the work out wagon this week – just wasn’t sleeping well at all, let my mind get the best of me and let myself wallow a bit. Usually I pull myself out of these funks in a day or so but for some reason this funk lasted a few days longer. In hindsight the time I could have been at the gym this week (3 of 4 mornings) weren’t completely unproductive. I did finish a brand new 350+ page book which helped me escape my mind quite a bit. Should have read a happy book instead of a heart wrenching one but it was a really good, fast reading book for me – so it’s still worth something!

My 5th chemo was yesterday so today I declared that I have to stand back up, get back on the horse, the wagon, whatever you want to call it and give my body the exercise it needs to stay strong.  To that end I got myself out of bed and onto the treadmill this morning and walked a good walk of 1 mile with the majority of it at a 12% grade. Got my heart rate up nicely and kept it there for a while which is fantastic.

Fall down 10 times. Stand up 11.

Report out for the day: Standing strong.

I’ve been posting mostly workouts recently. Seems I’ve got the rhythm down for this 3 week cycle I’m on. Thing is, I’m in a funk. I should map it out on a calendar. I think some may be hormonal since my hormones are anything but normal. Some days I am better at controlling my food choices and intake than others. Yesterday was a bad day. I’m in a funk. Going to the gym yesterday didn’t help clear it like it used to in the good old days. I want to sleep and be warm and snuggly but I lie in bed, hot under my blankets and I wake up at 4 am no matter what. I want to fake out my circadian rhythm by getting up for a bit and then hopefully returning for a little shut eye. I know I need it. I stayed up last night watching the end of a movie because out of nowhere I felt nauseous enough to have to take a pill to calm it back down. Argh! So frustrating. I would like to be done with this all now. I want to fast forward through it all and just have it behind me but you can’t. You cannot selectively fast forward the bad and just slow down for the good. Doesn’t work that way. Just is.

So each day I try to choose happiness over funk but I don’t think it’s working as well. Yesterday I went for the chai latte at work to help boost my energy. I feel like I must be doing pretty good if I’m back to having anxiety over work. So much to do and everything takes longer than I think it will and I just know I’m going to be letting folks down if I don’t at least finish some big things on my to do list. I had my birthday off and loved it. I planned all sorts of things that I liked to do and I did them. With so much time outside of work I’m definitely not as work focused as I was before – and I think that’s a great thing but I still continue to feel a deep guilt that I’m not knocking it out of the park like I used to. I know, I know I have to focus on what I am accomplishing, and stop telling myself and sharing these negative thoughts with others because if I didn’t tell them, they WOULDN”T KNOW! Ugh. Funk Funk.

I guess I’m just sad. I am tired of looking in the mirror at my bald head day after day. I wish my hair would come back – but it won’t even begin to do so until some time after my last chemo on July 9th – which is technically my last chemotherapy but far from my last 3 week visit for my immunotherapy which will continue every 3 weeks until about April 2016.

I want to read more books. Should have started reading the Girls of Atomic City sooner – it’s another thick book, non-fiction that looks great. I will have a new fiction book to read after this Saturday when I meet with my book club. Books seem to help pull my mind away from everything that is going on.

And when folks are so supportive and say “you are almost done with your chemo! Isn’t that great?” all I can think of is how much closer I am to my double mastectomy and reconstruction surgery. Yeah?! I’m already planning for my 3 weeks off in August – sleeping, huddled on the couch. Reading. Resting. Recovering. It’s going to be here before I know it and I fear I’m- know I’m – beginning to obsess over work. I just wish the funk would lift. It was easier to be positive earlier on I think. Now I’m in one of those spots in the marathon where you just wondering how you are ever going to make it to the end and you think to yourself, just keep moving. Don’t stop. One baby step at a time. Distract yourself. Enjoy the scenery. Look around and take in the sights around you as you continue on this detour, this journey. And when it doesn’t sink in, say it all again, with feeling.

When you are on the chemotherapy roller coaster, you lose time. With each 3-week cycle I begin with a weekend of sleep. So much sleep you think I’d go insane but, I’m so tired and my body so needs it, that I simply rest as I need to. I can tell when I’m starting to feel better because I begin to get fussy and fidgety about being stuck sleeping the days away. After my 4th treatment I lost most of Saturday, Sunday and half of Monday. Time flies when you are going through chemo.

Thing is, I’m also missing things. Missing all of the birthday parties my daughter has been invited to. Her T-ball practices. I miss my small but growing social life. I know. It will all come back but really what I miss is hanging out with my daughter and seeing her enjoy each of her activities. I used to be the main “birthday parent” but now, that’s all changed and I’m the parent that everyone hears about but no one sees. It’ll be nice to be back for all of the events. I miss taking pictures of her at all of the events- sharing them on FB with friends and family. Documenting her life as she gets older. That’s something I like to do. There’s just a bit of a hole in my archives for now. I’ll have to learn to deal…..

note – update added June 4, 2015 – see #4.

I always liked art in school. Something about creating things, art – always made me happy. In high school my art teachers spoke of the “Artistic License” that everyone in class is given to make art for themselves – whatever it may be.

As I sit here, feeling somewhat philosophical, I am reading into this further.  Artistic License isn’t just about the license I have to free myself and follow my whims with color and brush strokes on a canvas in order to see what develops, what is born out of my play, but in fact, Artistic License could and likely should, apply much more broadly to my entire life. My life is what I make out of it, every day. The choices I make when I get up. The lists that I create to organized and bucket-ize my life into what becomes mini tasks just to be checked off.

One thing that has become blaringly obvious during this whole Life Detour, is that life isn’t about succeeding and checking off the lists, it’s about having conversations with friends and family along the way. It’s about living in the moment not from moment to moment. It’s about opening my eyes to see the pure beauty and happiness in front of me and letting myself take the time to see it and feel it, and thus, slow time down while I take a mental image and file it away. It’s precious. It goes too quickly.

My next birthday is come up rather quickly, and besides New Year’s Eve, this time is now making me think more about the things that I want to do in my life. What makes me happy? What activities do I miss from my childhood that simply vanished with age and maturity (for no good reason)? What new interests have I discovered but never pursued as much as I have wanted to? What things are on my list? What could I do now? Today? to work towards something that would leave something more permanent on this earth than I am?

1. PHOTOGRAPHY. I had a passing interest on weekend last year to enter a photography contest at a local arts and crafts type of store. For some reason I was drawn to the contest – they needed entries and for some reason, I thought I could win. I went home and look for artsy photography photos I had taken where I felt I really captured an emotion, where the light was just great or the content just inviting. I identified something around 10 or more photos. Being digital I was going to need to print them out at a local store then pick them up and take them back to the craft store to actually submit. Sad thing is, with all of my excitement – getting the digital photos made became too much effort and all was lost.

Now, I dream of making my own photography book. One amazing photo per page where ideal, other pages where photos are collaged together according to my own whims and Artistic License. Can programs like Shutterfly help me do this? To create my own book, in my own style? I fear not but even if I could make a single copy of my favorite photographs then I’d have something to hold onto, to pass on, to share.

2. PAINTING. I miss it. I painted in middle school, in high school. Then college came followed by graduate school and being a post doc and going all scientific and PhD minded. Then I selected the world of biotechnology to embrace and grow. Companies, publically traded companies, are all about the mighty dollar. How much it makes. What the ROI (return on investment) is. How fast are we growing versus the market? Versus competition? Good enough soon enough. Do more with less. It’s not about Artistic License and following your whims and fancy. It’s about line of sight to the next dollar, the next big product, the next big win and designing your strategy is to get there. It’s 180 degrees from Artistic License. Like ying and yang in my life. I miss painting. I miss just making something “because” and being free to make what I want for the pure pleasure of making it – not for any money, just for the pleasure of looking at it more later.

3. TRAVEL. I’m not a huge traveler but there are a few things I’d like to see before I kick off. 1) Southern Cross in the sky over the southern hemisphere – Australia? New Zealand?, 2) Northern lights in Alaska on a cold winter’s night. 3) kayaking at Bioluminescent Bay in Puerto Rico (http://www.rinconvacations.com/bioluminescent-bay-puertorico.html – Tour #3) 4) Visit Petra (http://international.visitjordan.com/Wheretogo/Petra.aspx)  4) take vacations that include rides on amazing trains around the world, 5) go back to New Orleans and wander through the artsy stores in the key districts for hours on end – looking at everything. Buying arty things for days and days. Eating amazing food and just letting it all go to relax, and be free.  I’ll think of more but for now, this is what is on the travel list. *late addition: 5) See more waterfalls. Need more waterfalls in my life. Used to go see more of them but not in a long, long time.

and more ideas to come here, too….takes a while to come up with things that are really of interest. Visiting Crater Lake was on my list as well – and that one I did complete! Also, I have ridden on the Yukon Pass Rail Road and it was amazing!  We’ve stayed on the coast by Sunset Bay and I never get tired of that view.  Much to think about. Much still to enjoy.

update June 4, 2015:

4. “I LOVE YOU WALL” IN MY HAPPY ROOM. In my house I have what I call the “happy room”.  When my husband moved all of his computer stuff out of our 3rd bedroom, I gained a room. I took the time to repaint it some great colors. I went to IKEA to get some beautiful shelving and I filled it with things that make me happy. It was going to be my place to go but it quickly became a place for both me and my daughter to go and hangout and do crafts together (even better!!).  Lately this room has fallen to becoming the “shove it quickly in this extra room” dump spot. I need to reclaim it. I need my Happy Room to be a welcoming, happy place that it once was.

Now – what better way to reclaim my room but then to improve upon it? My daughter gives me notes weekly that say “I love you, Mom”.  I have so many that I realized I need to start collecting all of these beautiful things. She’ll only be 5 once and they are too precious. So, I started putting them on the side of the refrigerator – well that is already filled up and overflowing. I need more space, to expand – a WALL! So what better way then to use a wall in the Happy Room and create an “I Love You” wall from my daughter to me and my husband?  Love the idea. Might just take off my birthday to work on this….since it is just around the corner….

Got myself a small, viral cold from my family at the tail end of Memorial Day weekend. Only good thing I did manage to do yesterday (Tuesday after Memorial Day) when I stayed home from work to rest and sleep (in the hopes that the cold would just pass by me and not do anything else to me) – is that I finally made my decision on my surgery. Yippee I guess? I wrote out all of the reasons in my journal. Read through them. Yup. Decision is made. The surgery is going to be extensive but it’ll give me the best of a few things that a lumpectomy wouldn’t give me.

Going to work today but in all honesty all I want to do is stay home and hide under the covers like I did yesterday. In between all of the sleeping and resting I did get through about half of the current book I’m reading.  Just want to hide. Tomorrow is #4 – and cold or not, I think I’ll still get it. Will know more tomorrow.

I’m certain that depression is a normal part of this whole process. I was doing really well avoiding it and fighting the good fight but a few things seem to have brought it on. 1) Now that the decision is made I have a tendency to wake up in the mornings thinking about the decision and what it means. 2) I tend to think about that decision not just as physically what will be changing but more about…in so many weeks I’m cutting things off. Rather rough to digest. 3) hormones. They are not normal right now. The doc had said that the treatments would likely push my body into menopause and I think that is where it is right now. 4) it’s a long marathon of a battle and looking in the mirror every day at my peach fuzz head is getting tiring. I look at my husband’s bald head and he has a nice line of hair that is healthy a few days after he’s shaved it. Mine – nadda. Some day my hair will come back, just not today. 4) sunscreen. I don’t want to have to keep putting it on all of the time. Keep getting it into my eyes somehow and it ends up stinging for hours. So, I opt to stay inside where the sun isn’t or also praise the fantastic cloudy weather we’ve been having. Seems easier. Had a great time the past Sunday and Monday hanging out with my daughter just doing inside activities together. Wish I could just stay home and hide. Problem is – things at rest tend to stay at rest and I know that it is NOT good for me to stay at rest.

My new mantra: Lots of good sleep. Drink lots of water. Get some exercise (lacking on this one right now).

After my chemo began, my doctor mentioned neuropathy – and asked if I had been noticing anything. I always said no. For some reason, I equated numbness and tingling – similar to carpal tunnel syndrome with what neuropathy was. That was incorrect. Over the last weekend I thought I’d stubbed one of my toes – which is why it was sore. Then by Monday, I realized ALL of my toes felt sore – as if they were recovering from being stepped on, as were ALL of my finger tips.

I Google neuropathy –

From Wikipedia:  Those with diseases or dysfunctions of their nerves may present with problems in any of the normal nerve functions. In terms of sensory function, there commonly are loss of function (negative) symptoms, which include numbness, tremor, gait abnormality. Gain of function (positive) symptoms include tingling, PAIN, itching, crawling, and pins-and-needles.  Pain may become intense enough to require use of opioid (narcotic) drugs (i.e., morphine, oxycodone).

Great. The pain part has now officially sunken in. More fun with the side effects of chemo. It’s right up there with the burnt tongue, blood in the tissue, nausea, diarrhea and hair loss.

If I look at my hands, specifically my nails – I can see the insult that the chemo has left on my body (thanks carboplatin). Like my hair, my nails show the signs. I have strange discolorations in the “new” nails that are growing out. It’ll be nice to be beyond this all some day.

Waking up and realizing that it is FRIDAY!

Getting a good night’s rest.

Getting on the treadmill and feel damn good about what you accomplished on your “run”.

Having the support of friends and family.

Not feeling bloated.

Did I mention that it was Friday?! 🙂

Happy Friday to all…

I’m afraid that I’ll make the “wrong” decision.

I’m afraid that there isn’t any “right” decision.

I’m afraid that I’ll have another battle with cancer and next time it won’t be an “annoyance” it’ll be a talk about life and death.

I’m afraid that I won’t be around to see my daughter grow up, get married, have kids.

I’m afraid that if I go for a double mastectomy and reconstruction that I’m going to hate how I will feel physically during all of the recovery and surgery and NOT be able to get myself back on the bandwagon of exercise and staying fit.

I’m afraid if I go for a lumpectomy and that next time will be right around the corner.

I’m afraid that even if I go lumpectomy because I don’t want to lose my breasts that my sex life will never be the same again.

I’m afraid that I’ll never feel strong, physically again, and I won’t have the strength or willpower to take care of myself the way I now need to.

I’m afraid that I’ll never have long hair again – like I had before.

I’m afraid that I’m the only one that can make this decision for me.

I’m afraid that I’ve lost my sense of optimism and cheery outlook.

So tonight I decided, after attending my second ever cancer support group, that I’d sit down and write out (again, in a new journal) all the pros and cons and questions and thoughts and different ways to look at my situation in the hopes that this would lead me to some realization. Putting things on paper usually helps me clear the air and I realize things I wouldn’t have otherwise.

Not so much this time.

I decided I’d go on line and look for more info that I hadn’t looked into before. So I did, I went to the Breastcancer.org discussion boards and you know what? I must be a freakin’ idiot. Their discussion boards make no sense to me. Some posts are ancient. Some are not. Some which are more recent use abbreviations and I have NO F’ing clue what they are talking about! How is this possibly helping me understand anything? You know what it is doing? It is upsetting me more to try to look for help and come up not only with nothing but with info that could be helpful if I could actually decipher the magic code these women are speaking in. It’s only breast cancer – where is the cheat sheet to tell you what the F everything they are talking about means??!  They have abbreviations such as PS, BS, BMX, RADS….I couldn’t handle it. Sent me over the edge. Wanted to throw my computer across the room. Not helping.

I haven’t even had the guts to Google things like “masectomy images” or “bad lumpectomy” images because frankly, I’m afraid of what I’ll find. I even asked the plastic surgeon I spoke to this week for examples and he told me I could go on his website or use Google. I don’t want to find horror images but it seems that’s my next task to try to settle this mess and make some semblance of a decision on my upcoming surgery.

Side note – as I had my fit I was saved by my husband who is all knowing and helped me decipher the insane abbreviations. Now when I read they make a bit more sense but I still am NOT a fan of the discussion boards. I like people better.

It’s late. I’m going to bed. Nothing is sorted. I think, after straightening the heck out of the house, I might try my new app for Her2 cancer patients. Has a relaxation/meditation thingy to listen to. Who knows? It might actually work to calm me down. Or not. Ha. Time will tell.

They suck. They all suck. I have to make a decision – lumpectomy or double mastectomy and reconstruction and the more information I get, the more doctors I talk to the more F’d up it all is. Seriously. None of the above.

Unfortunately, life isn’t like that. A decision is necessary. I’m wondering if there are ways to bend the rules, find a loop hole to wiggle through to somehow make it all easier and so far, no secret has been revealed. This sucks. Going to talk to more women who have been through it. I’ve spoken to my share of doctors and gotten their opinions but one thing in this awful place that is certain is that this decision solely lies with me. My decision. My ownership. My responsibility.

I need a hot chocolate and a pastry. Screw work. This is too much.