Friday, August 26, 2011

Evening reflection


Every night before I go to bed I usually try to lay in our girls room for a few minutes or more with my legs on the bed in the asana viparita karani (modified legs up the wall pose).  It calms my mind, relaxes my body, and there are clouds painted on the ceiling for me to watch. I actually do, too- it changes day to day on what images I can see in them, even though they are not moving or changing themselves.  It's a nice way to stretch out, unwind and soothe my body before I load it up with chemicals so I can have a peaceful night sleep.

Inevitably, my mind wanders to thoughts that sometimes turn into blog posts. I haven't yet gotten into the habit of carrying a notebook of my thoughts around with me everywhere I go to scribble down my random thoughts just yet.  I feel like I would maybe need invest in a new pair of birkenstocks and an oversize sweater if I took up the habit at this point in my life. (not that there is anything WRONG with that- I owned a fine set of birks and some oversize irish fishing sweater to knock about in in my day!)

Yet, sometimes, I do get up off the floor and post something, and I'm not at all convinced its really important to anyone else, but I must get the thought out of my mind before it drills holes into my brain or something equally destructive like trying to write poetry.

So tonight, as I was stargazing in my starry, starry night room, I had a few random thoughts I wanted to share here.

1.  I figured out I AM my own tragic romance novel.  (well, minus the money, drugs, fame and beauty.)   Just watched "Love and other drugs" with Anne Hathaway and Jake Gyllenhal. Good movie, made me sad, it hit a little too close to home for me today.

2. Any relaxing yoga pose is not quite so relaxing when you are covered in Aveeno Oatmeal paste and your dog is in the room with you.

3. Dogs appear to REALLY enjoy the taste of aveeno Oatmeal paste.

4. Soothing Native American flute music loses some of it's serenity power when you are forced to listen to the same 3 songs  in the hospital for 12 hours straight because someone put the ipod player too far away from the bed to allow me to turn it off or change the station.  I just put it on again a month later and had flashbacks to that first horrible night post mastectomy in the hospital.  Nope not ready for that music just yet!

5. Lastly, I've noticed that successful, well read blogs usually offer give-aways that relate to what they are blogging about.  This keeps their readership interested or at least people popping by to see what they could potentially win.  But what would I give away to readers that come here?

6. I think the drugs have kicked in so it's nighty night for now.

Sick and Tired

Ahhh, the small parental satisfaction of being able to use those words to preface a rant about one of your child's small transgressions AND have them actually be true...

It was a lot easier to be optimistic and hopeful about my cancer journey before they started actually treating me for it. Things look a little LOT more bleak on the other side of the war against my body; body parts missing, chemical and biological sieges and then, the pox.  Is it any wonder there should now be blood?

Those long hours after those fateful words were uttered ("This lump is new")  have turned into days; the days into months.  One month since my mastectomy, two months since my sentinel node biopsy told me I wasn't going to die from this cancer, at least, not yet; three months since hubby found that aforementioned lump.  Three MONTHS! one quarter of a Year!  In a world where I have to write every little detail down so I can remember it and regurgitate it onto the next medical form, I can do this math in my head simply and easily, every month.

In the beautiful irony of my body where nothing seems to be working the way it should, one process is strictly and dutiful functionary, and on time - every 28 days - I can count on it.   Interesting to me that my cancer is in part fed by the same hormones that regulate my "cycle"  Estrogen positive receptor cells. I have been able to easily chart my cancer journey because it has so perfectly synched up on a monthly cycle with my period.  I look back and wonder of the connection between 'the crazies' that occurred whenever my estrogen got ahead of me - birth control, pregnancy, hormone replacement therapy (shudder) - and wonder IF I had listened to the cosmic signs of dis-ease within my body, would I be in the place I am now?

BKS Iyengar wrote "Fear and fatigue block the mind. Confront both squarely, and then courage and confidence will flow into you."  I think that about sums things up for me right now.  Sick AND tired.  This disease is slowing me down just a bit, bolstered by some crazy lady hormones that don't have the best reputation for being on my side.

I woke up around 6am hoping against hope that I would be able to fall back into that blissful state of sleep that continually eludes me; the place where pain and fatigue slip away; my robo-boob doesn't ache, my body doesn't itch, my stomach isn't queasy and my uterus isn't cramping.  Too much to hope for this am, though I am sitting here slathered in a very attractive colloidial oatmeal paste which is doing a small part in relieving one of my discomforts. The advil and antihistamine should kick in sometime soon as well.

Then it will be back to the business of living this life with cancer, trying to find the spiritual answers in this lesson that I felt so strongly at the very beginning.  I have let some of that slip in away in the minutiae of trying just to live through it.

Even though I am still a bit shell shocked at the vibrant color of my new hair, the fact that I have gone out and shaved my hair short AND dyed it magenta IS a small victory on the side of courage.  It is the 2nd time I have done that since my diagnosis, and this was by far the more difficult decision than the first time.  I realize that I cannot make one small leap and call it good; courage is in continuance. Continue to get up, breathe, live, fight,  love, laugh and cry.   Iyengar also wrote, "Do not stop trying just because perfection eludes you".

I really like that one; I may have to have a temporary tattoo made up of that so I can stick it on my bald head after my hair falls out and inspire others. Now, though I need to go practice yoga.


Thursday, August 25, 2011

3 days post chemo haze

Well, I survived my first round of chemo.  The actual chemo session was pretty much a non-event.  I did take a Xanax before I went because I had the jitters and have figured out pretty much everything about my cancer experience is easier to deal with once I've had a Xanax.  Not promoting anything here, just pointing out what works for me.

The first night was the worst, and I'm not sure if it was the actual chemo or the fact that I ate leftover tortillini with sun-dried tomatoes and fresh grated romano cheese when I got home.  I was feeling fine and all the stuff I have read about dealing with eating and chemo say to eat when you are feeling ok.  So maybe I took it a little too literally.  In any event, I managed to survive the night without puking, but I did end up sleeping in the girls' room. Actually not much sleeping, but lying very still in order not to promote any further bouts of feeling like I'd rather puke than feel like I was feeling.  Very much like stomach flu, in that I couldn't decide if puking would make me feel better or not, so in the end, I decided to work very hard NOT to puke, since that is always my preferred outcome.

I did actually bring my spare yoga mat into the girl's room last week, since it is one of the only rooms left in our house with carpet, thus the preferred napping place for all our "hairy children".  Doing child's pose on a carpet full of pet fur is not so much fun for me.  I did find out that Child's pose WAS very helpful during that first night, as well as deep breathing and corpse pose- fitting considering the state I was in at the time.

I did find myself wondering about specific yoga postures that would ease the discomfort of chemo, and to that end, my hubby checked out a TOME, for lack of a better word, of yoga postures that are compiled just for that purpose...YOGA-The Path to Holistic Health by BKS Iyengar. I can barely pick it up it is so huge- I weighed it 4.75 pounds!!! (5 lbs being by new measure of things I cannot lift, based on post-mastectomy orders - hey they never said how long AFTER my mastectomy, so I'm trying to milk it as long as I can).

I finally fell asleep around 4:30 am, pretty confident that the Compazine they gave me for anti-nausea was pretty worthless for me but happy that the worst of it was over.  I'm also pretty sure that the ginger syrup I made had too much sugar and not enough ginger, and I'm afraid that I won't be using it at all for the rest of my chemo treatment as the smell of it post chemo makes me want to puke.  Interesting paradox, no?

Next day I tread pretty lightly in the food department, choosing saltines and fresh melon with a little salt.  I am finding, that, like pregnancy, I prefer salty, sour foods when feeling queasy. That is the closest feeling that I can compare to, the queasiness I had throughout my entire pregnancy, and I handled it by eating frequently (recommended) and with lots of salty foods (not so much recommended).

Today, I went and had my hair done, totally unsure whether I'll even have hair in two weeks or not.  The pink arrow game is a month from now and my stylist dyed the entire top of my 'faux hawk' hot purple/pink and cleaned up the roots from my last hairdo. It's REALLY pink.  This is me just out of the shower to rinse off all the little short hairs that get all up inside everything and itch me crazy.
Additionally, just for fun, I guess, I got some weird itchy rash on my face and arms since Tuesday evening and I have no idea where it came from. I called the Oncologist's office just to make sure it wasn't some allergic reaction from chemo, and no, it's just another one of the rashes I've started to grow accustomed to this year....grrrr.  Trying to rack my brain as to what I could have used that would make my arms and face break out but no other part of my body.  Luckily I have steroid cream in spades in my meds cabinet, since I've had allergic reactions to 3 out of the 4 surgical scrubs they have used in my various procedures over the last few months.

Man I sound like a total druggie, and the truth is, with my RA and now cancer, I AM on a crapton of medications!  I hate it, but I can't actually seem to decrease any for any length of time.   I actually just gave into it and ordered a little caddy tote at the Thirty One party on Tuesday JUST for the explicit purpose of carrying around all my meds.  I found myself the day after chemo stuffing the thermometer, and bottles of drugs in whatever pockets I had on me at the time. I figure a cute little pink medallion caddy was just the thing to get me organized AND match my apparently new signature color. I even tried to get it monogrammed (something I thought I would NEVER EVER think I would want to do) "Mommy's Meds" but the tote was too small...alas, I have probably saved myself from an evil addiction to monogramming that I didn't know I possessed!  whew...

So...this brings me to Thursday, and I don't have a lot to show for what I've been up to, a LOT of lazying around watching Last Airbender with my son, and not much else.  I'm not feeling horrible, just drained and mildly queasy, plus I can't seem to find a comfortable position to sit in for any length of time, and my tissue expander is acting up again.  I have a sneaking suspicion this is probably being caused by the fact that I'm just lying around and not doing too much moving or shaking this week.  It's so hard to try and find the balance between enough movement and rest.  Right now, I'm definitely overdoing it on the not moving enough and I can feel it all over.

matching digits, compliments
of my stylist "Pompei Purple" by OPI
 I'm also in a tizzy fit about what to wear on my night out this Saturday.  Up till now, I've been managing with
tank tops, BC message tees and a smorgasborg of terry knit lounging pants.  But I want to dress up a bit, it's my pseudo birthday bash, and I have a lot of variables to consider...first...must match the hair.   Or at least NOT clash, which leaves me with about 4 choices:  black, white, grey or beige... Second, be kind to the maimed  cleavage- and HIDE my borg port, - it's just gross looking.  Third, is fun and flirty too much to ask for?  Unfortunately, I've left it to the last minute, and now, I'm faced with trying to come up with something out of my closet (paltry and sad) or running out to the mall tomorrow for some last minute power shopping.  Not sure what will happen, I'm supposed to have a therapy session and then lunch with my mom and old neighbors from my childhood.

My mom hates shopping at the mall more than me, so not sure if I can try to convince her to take me out if I promise to only hit a couple of stores and call it quits.  I did some online browsing and think there are some promising options at AT Loft or NY&CO...but of course, I will need to go out and TRY stuff ON! ugh.

.I should probably look for a bra that actually fits my new body too, all the ones I've been living with were purchased for my post lumpectomy/ post sentinel node boobs and not this robo boob like thing I have in my body currently.  I'm trying to avoid a trip to 'the boutique' not because I don't think it offers a useful service, but if I go, I will be confronted with wigs, and prosthetics and all sorts of things I've vowed to avoid during this cancer experience.

 But...oh...if I could just find a comfortable bra, it might all be worth it!

Promise to try and get one or two decent shots of my 'do all done up this weekend, instead of me and my little iphone in my bathroom!

Monday, August 22, 2011

Signals from the universe

Is it a coincidence or a sign from the universe that I've misplaced my razor blades one day prior to starting Chemo?

I took a nice hot bath last night (without soaking my port) and realized that I've been a bit lacking in the personal hygiene department since my ordeal began. This is partly out of requirements (can't get any of the damn incisions wet for several days).  Another obstacle to maintaining my previous high standards is discomfort from my procedures - things that they don't tell you in any of the books they give you to manage your 'cancer journey'.

My left armpit is still numb from my sentinel node surgery, though I think the nerves are starting to come back and my range of motion for the left side is getting better - thanks to regular yoga stretches in the evenings -MY choice of physical therapy.   Envision getting a cavity filled at the dentist, and that weird rubbery feeling your lip has afterwards from the Novocaine.  Now imagine this weird numbness is in a crevice you can't quite see clearly, and that you are going to put a razor blade against the surface and shave by feel!

By circumstances though, this hasn't been too much of a problem, since I've been pretty much banned from the pool and hot tub since the end of July.  First by post-surgical rules, then by the fact that I don't have an appropriate swim top for my post-mastectomy figure.  Additionally, once Chemo starts, dangers from bacteria and micro-organisms in the water can threaten my weakened immune system.  Who knew??!  I may risk it on good days, just for the soothing effects of the hot tub that we spent all the money this past winter to get going again. Motivation to keep the tub sanitized and balanced.

Ok, I'm sidetracking myself.  There are other things I planned to write about today.  I do find it interesting the small things we take for granted prior to something like this- the simple act of shaving my armpits turns into life or death struggle.  (well, maybe not life or death, but certainly, a more risky endeavor than it had been previously.)

Sweet Fridge Pickled cukes and onions,
waiting for brine. compliments of "TASTY"
I woke up this morning definitely feeling the after-effects of my short burst of pre-Chemo nesting. Sore, achey and rumbly in the tummy.   Hubby made a fabulous Garlic Scapes pesto he found online at which brilliantly used up our surplus of scapes we've had taking up precious fridge space for a month now.  However, as Connor pointed out this morning, he can STILL taste the garlic, and I was having intestinal discomfort this morning similar to garlic gustational experiences I had when I was pregnant.

Another interesting life changing event -pregnancy -where I'm finding some parallels (albeit, I much prefer the outcome of the former). Your body goes through physical changes beyond your control and your hormones go crazy and your lose your mind (quite literally).  I ate garlic in almost everything pre-pregnancy. Then, sometime during those 9 months, my body turned against it, and I've had to cut back to virtually none.  When I do cook with it, I usually 1/2 the amount, versus doubling prior. Dinner was delicious last night: Cheese Tortellini in garlic scape pesto with caramelized onions, summer squash and smoked ham.  I woke up remembering why I need to watch my garlic and onion consumption but also with a strong desire to make some ginger syrup today in case I need it in the days to come.

A quick search online took me to a cocktails blog (must bookmark that for sometime in the FAR distant future) that contained what looks like a simple and quick ginger syrup.  I already have the soda stream, carbonated water maker, so that means home-made ginger ale!   Here is the link for the syrup if you are interested

I know that I am getting anti-nausea medications in my IV prior to starting my chemo, but even still, my girl K,  another Fighter in Maine, told me she was still nauseous several days after.  I'm starting to get concerned about my social schedule I have booked for the week - I planned it before I had my treatment schedule.
Lacinato Blue Kale growing on the
north side of the Beans

Tomorrow, my former ayurvedic nutritionist from real food wellness is coming to visit me at my home! I'm so excited to see her, it's been over a year I'm thinking since we last met, though I've talked with her via email.  I 'bribed' her out to Lowell with promises of Kale and some leftover sun-dried tomatoes from last year.  (She maintains she would have come out regardless of the booty).

Then, later tomorrow evening, I'm supposed to go to a Thirty-One party hosted by a friend of mine.  I love the products (who DOESN'T need bags?)  Plus I promised to book a party of my own off her event. and I've found some NEW items in the fall catalog I just must own - to aid me in my chemotherapy, of course!

This weekend, there is Djam at the Globe in post-40th birthday night out.  I'm so worried that I will not be up for it. I will promise myself to be extra good to myself this week to save up the energy to be able to enjoy the party.  It is a bellydance hafla and concert by Djinn, Beatbox Guitar and and the bellydance performance troupe,  Bellyqueen.  I'm so excited they are coming to MI!  They are from NYC and I feel like this is a dream come true that I get to see them right at this point in my life.

Wow, no wonder I'm exhausted, just mentally going through this week is making me tired!  And I STILL haven't gotten to the important stuff I REALLY wanted to blog about today!

I went back to my Yoga mat this morning.  This seemingly small event really is a milestone. My first REAL practice since the day before my mastectomy.  I've been feeling like it's time I started working on that list of things that I wanted to do while I was on a break from work.  The stuff in my life I deemed important when I was evaluating how my life was going to change as a result of my practice.  I've let some of that slip in the post surgical recovery, and I need to realize that it's ok for me to rest when I need to.  But it's also important to keep moving forward, when I'm ready, to enable me to come back to the land of the living, and a life post-cancer treatment.  The list was not complicated, but somehow I've managed to slip into some old habits that aren't super good for me.  Getting up to the mat today showed me that I can still do my practice, even if I have to modify yet again, to accommodate the chemo port and the hot water bottle in my chest.

I'm sure that I will need to continue to modify once my chemo starts.  I don't know at this point if I will be able to even get out of bed tomorrow, much less get out of bed and on the mat.  I will have to take that one day at a time.  Knowing that it is waiting for me needs to be a comfort and not a nagging.  It will be there for me when I am ready to take the next steps.

Right now, though, I need to go make some ginger syrup!  My chemo starts at 3, which gives me about 2.5 hours to get ready for it because who knows what will happen tomorrow?

Sunday, August 21, 2011

This is the final countdown...

One more day of relative 'normalcy'. Chemo starts tomorrow.  I MAY need to burn this after all.

I had my girl S from Indy by way of Lansing by way of Ionia was in town and I was able to see her this weekend. I realized how much I missed her, and how important it is to make sure worthwhile friendships don't fall by the wayside.  We talked about vital issues like, "should I dye my WHOLE head pink or just the top?" (her advice, TIP it; which, by the way I had brought up as an option to my hairdresser, already)  We'll see what happens at Thursday's appointment.

Let me just say that at almost 4 weeks post mastectomy, this tissue expander is STILL a pain in my bahookie, and a lot of other places as well, I'm still trying to dress around it, sleep around it and I have good days when I think it's finally getting tolerable and other days when I am cursing that I ever agreed to have it put in.  I told Hubby last night that it felt like my hot water bottle was shoved in there, and he optimistically pointed out that it must be getting better since I had changed it from my hard metal appliance analogy.  I appreciate his balancing energy to help me get through the tougher phases of this journey (and I'm not just sayin' that cuz I know he reads all my you, honey...)

(I know, I know, it is temporary, it's only temporary....repeat 1000 more times).

The chemo port has been rough to get used to as well, it's not yet a week, so, far from healed, so now I'm juggling left side pain with right side pain, lumpiness and discomfort with the added dimension of trying to figure out what to wear that won't aggravate my tissue expander OR rub against my port bump .  Today, I whacked my port bump with the metal fan while I was cleaning it -YOW - that was NOT a fun experience.  I think I will leave fan cleaning alone for a bit longer.

Add to this exhilarating one/two punch, pain and stiffness from either my untreated RA, or the fact that I haven't been moving quite as much as I should be (or a combo of the two) PLUS now I have PMS, so all this ends up making me a blubbering, teary-eyed, snot-bubble mess.

I started a venting blog on Friday that got cut short by the arrival of my aforementioned girlie friend, and I was looking back over it and realized it really wasn't even worth finishing.  So I started another, more POSITIVE one...(oops, think I lost the positive vibe around the 2nd paragraph here).

So, to bottom-line it, I think I am just feeling guilty for NOT being busy to within an inch of my life.  I had the perception that I would have all this free-time; where, in spite of some minor inconveniences along the way, I could pursue my passions, unhindered by having to go to work.  In reality, my productivity is contingent on how much weight I can lift on any given day (forget cooking in the Le Creuset, at this point-EVER!), or how much energy I have after taking a handful of pain-management medications and a shower(not much).

Thus far, in my SEVEN (7) weeks off work, I have managed to read only about 2.5 books (I'm not counting the last 2 books of the Junior Fiction books I was previewing for my son);   knit 1.85 projects (those last few i-cords are a doosy!),  spent about 4 hours in my garden (ok, in truth that number may be a tad bit higher, I lose track of time when I'm on squash bug/vine borer/japanese beetle killing sprees), and about 2 weeks straight floating about  in my swimming pool with my dog, Max.

THIS is NOT the productive, perky, peppy me I envisioned at the start of this when I was contemplating just how much time off was looming before me. It's already almost the end of August for god's sake, and I have a paltry 10 cherry tomatoes sitting on my counter.  This is the sum total of my tomato production thus far this season, from the measly 30 plants I put in the ground. Also, I must add, the tomatoes in my kitchen are actually from the volunteer vines in the compost pile and the ones growing out of the rock pile by my deck steps!

Tomatoes (in theory) and Peppers
What the cabbage is going on here?? (actually, there will most definitely be a lack of cabbage this year, I fear they are still sitting in 6-pack cells under the cucumber trellis, completely overwhelmed and lost to the world until the first killing frost.)

I guess I am not super-woman after all.  This vexes me terribly.   (I know, I have cancer, maybe time for a reality check?)  This means that instead of being the terribly efficient and abominably productive person that I wanted to be, an inordinate amount of my time is spent napping, pondering what I will ACTUALLY look like without hair and at what point I will lose it (before the Pink Arrow game or after?  Definitely by the Susan Komen walk); worrying about if I will lose my eyebrows and eyelashes as well. Also, hoping that I will lose it in other places that I currently have to take the time and energy to shave off.   Oh, and I'm catching up on season 2 of Dollhouse when my son is not around, and researching my Aang, the Last Airbender costume by watching back episodes of Avatar, when he is.

I know that in what will seem like a blink of an eye, this will all be behind me,  it's gone so fast even now, when I think back to the fact that I found that fateful lump BEFORE Memorial Day.  It's just the waiting for things to happen, and the time I've lost NOT doing something that makes me a little crazy.

Today, on technically a day of rest, I have managed to clean my dog-hair/dirt covered window fan, vacuum behind my bed and my nightstand (shudder), spray paint the old yellow nursery side table that my hubby has been using as a nightstand for the last few years in a bedroom without a lick of yellow in it.  Additionally, together, hubby and I canned 5 pints of blueberry jam, 4 QTs of refrigerator dills, 5 QTs of sweet fridge pickles, 2 cups of garlic scape pesto and a batch of ricotta cheese.  However, I think mostly it's using up nervous energy because I have NO idea if Chemo will knock a wallop in me or not.

Better to have a few jars of jam stored up just in case!

Thursday, August 18, 2011

"If I just breathe..."

"If I just breathe
Let it fill the space between
I'll know everything is alright
Every little piece of me
You'll see
Everything is alright
If I just breathe....breathe." Michelle Branch

I'm not gonna lie, waiting around for chemo to start is killing me.  well...I guess, not literally, tho, maybe, if I were the contrary type,  I could argue that it is, since there could be random cancer cells lurking in dark corridors, waiting to meet up with others and launch another attack.  Highly unlikely, even to my (sometimes) paranoid mind.

Here is the part I can't stand about it....the waiting....







it sucks doesn't it?  Throughout this whole thing, for me, the diagnosis or procedure or prognosis or determination that yes, I was going to have to get chemo never really bothered me, it's always been the waiting.   I think once I have my first treatment, see what it's like, see how sick it makes me, see how long till I don't feel like the walking dead, I will be able to handle it.  But waiting for the day to come is what keeps me up at night -theoretically- since I'm taking so many sedating medications I RARELY even move at night.  

When my son was a baby, I did a LOT of waiting...waiting for him to sleep through the night (four years, give or take 10), waiting for him to get through the temper tantrum stage, the pouting stage, etc. Perhaps a better word for that would be perseverance.  I knew it was just a stage and  that if I waited long enough, eventually the phase would pass.  And I didn't just do this with the bad ones, I realized that the snugly baby phase, the sleep 8 hours in a row phase, the eat whatever I put in front of him phase, those, too would eventually pass, so I better enjoy them while they lasted.

So, maybe, it's not waiting that I suck at, maybe it's fear of the unknown.  Even though I have several cool girls on my side who are giving me the 411 on what to expect from chemo, how long I have to endure this annoying tissue expander discomfort, I know that every one is different, and what happens with them won't necessarily be the same for me.  

What choice do I have then, but wait, and hope for the best.... and breathe.  Yoga principal number one is just breathe.  All other things you do are ancillary.   It's the breath that is the most important thing.  Focus on that and all things will work themselves out in the end.  That is good news for me since moving any part of my body makes other parts of my body feel like crap right now.  I can't imagine how I will be able to handle MORE shit once the chemo starts.  Fear tells me this, but in my brain, the small logical part still left there for now, I know there is an answer that has worked for me in the past:

Just breathe.

Wednesday, August 17, 2011

Cancer Support Network's Benefits and Power

If you are a cancer patient or a cancer survivor, you may feel at times that no one understands what you are going through or what you have been through. Describing your experiences to someone who hasn't had cancer can seem like describing snow to someone who has spent their life living in the rain forest. Indeed, your friends and relatives may just not be able to relate to your experiences.

This is why it is important to get support and strength from other cancer survivors who understand what you are going through.  For Example if you have or had
breast cancer, you would probably want advice and companionship from someone who has gone through breast cancer or is going through it currently. The same goes for if you have a rare disease such as mesothelioma, you will probably want to join a support group for cancer survivors who have gone through mesothelioma treatment. Not only will you be encouraged and find companionship, but you will also learn what you can expect and tricks to help cope with treatment from others who are farther along in their journey.

Some people find that writing about their experiences is particularly helpful. If this is true for you, then you may want to join and
online support group. An online group is also good for people who may not be able to get out of their house to attend support group meetings in person. One such online group is called the Cancer Support Network and can be found at

If you find that talking about your feelings is particularly helpful, you may want to join a support group locally. That way, you can gather together with other survivors in order to talk and work through your concerns and fears. You will also be able to share your victories and accomplishments. In addition, you may be able to find out about resources in your local area when you attend such a support group. This can be very helpful. In order to find a local group in your area, you may ask your oncologist or simply do a web search. Sometimes, groups post information in the newspaper about their meeting times.

Getting the support that you need is important. Whether you are a survivor, fighting cancer right now or in remission, you may want to join a group in order to connect with others who understand what you have gone through and are going through.

By: David Haas writer of the Haas Blaag

Tuesday, August 16, 2011

Resistance is futile, you will be assimilated

My 'good' side...last night

***Semi Explicit photo Ratings Warning ***

Chemo port is in place- comparatively speaking it was pretty much a cake walk as far as procedures go. I think it was even nicer than the MUGA, because I made sure I was well dosed with valium and xanax before I showed up this am.  It stings a bit, like an IV in my arm. Hubby pointed out it may hurt because they CUT INTO ME. oh yeah, I guess that would be a good reason.   I am starting to feel a bit more machine than person.  I realize that there are people out there with way more bionic parts than me, but it's very strange how in such a short time I've had parts taken out of me, off me, inserted into me,etc.
I just pulled all the adhesive off so it looks
a little gruesome.

In homage to Michael Pollen's book "In Defense of Food" which, by the way I HIGHLY recommend)  here's an iPhone photo of my "processed boob-like product".  

This is 3 weeks post mastectomy. The big picture: I think the current size is pretty close to what I want in the end.  The lumpiness of the left boob is because of the tissue expander and some residual swelling from the actual surgery


My Question:  It is technically still considered a boob?  There isn't really any boob left at this point, all the inside parts that made it a mammary gland have been removed, so too, the icing on the cake a/k/a the other than the location of the bump and the general shape, it's really just extra abdominal skin pulled over a plastic balloon filled with saline.  In the grand scheme of things, will this matter in the end?  I doubt it.  As a friend of mine once said about fake vs. real boobs...."I like real maple syrup, it's yummy.  But... that fake stuff is still pretty good, too.

I'm sharing this photo in the interest of science and to support others getting ready to go through a similar ordeal realize that they won't look like a TOTAL freak afterwards, regardless of how you feel.

   I know that I was pleasantly surprised at how good my boob looked even immediately after my mastectomy.  I have seen old pictures of mastectomies prior to reconstruction and prior to all the tons of work that has been done with breast cancer patients, and they always made me think of some horrible, gruesome surgeries where it looks like the boobs have literally been chopped off with no regard to the body or brain that is left behind to deal with the aftermath - an outdated, purely scientific/medical approach to dealing with a deadly disease...would you rather be dead or boobless?  

I know that I'm extremely fortunate to have invasive ductal carcinoma at this point in history, because of all the research that has gone before to understand what happens to the person after they go through an ordeal like this.  Especially in a society where boobs reign supreme. 

Ok, this could get ugly if I continue down this road....wading into murky waters now, so I'll end it here on a positive note.  My new PINK ARROW FORCE 4 girly tee that I picked up for the big game on Sept 9.  

This year I got it customized, too. 

Monday, August 15, 2011

Rainy days and Mondays always get me down

Well, it's not rainy here, actually, it's beautiful today, my perfect summer weather, sunny, clear and cool- 80 today. The weekend here was rainy and cool, though, and I noticed I did spend more time in my bed than up and about.
My 'familiar' Max :keeping watch while I battle the
 beasties in the garden
The one thing about the cancer journey is that it isn't ALWAYS about the cancer.   I mean right now, I'm acutely aware of it, because of this damn tissue expander in my chest, which is a constant aggravation and dictator on what I can or cannot do.  Another challenge is that I've been off my rheumatoid arthritis medication: Enbrel, for over two months, and I'm not sure, due to all the surgeries I've had thrown in the mix, but I am definitely feeling more sore, more achy and more tired lately.  Hard to believe that chemo may actually make me feel better in that department, but it will be an interesting experiment.

View of the garden from the West side
So I went out to the garden yesterday in between rain showers and looked at what a summer garden with cancer looked like. Of course the garden doesn't have cancer, but even this spring, before I knew I was ill, I told my hubby, "I'm not feeling up for a big garden this year".   My life at that point was overwhelming me, and I felt like I couldn't handle the additional demands that our garden demands.  So, the seeds got started late, or not at all, the seedlings were neglected....I STILL have spring crop seedlings sitting in my garden waiting to be transplanted, though, I think the cucumbers have claimed them as their own.  
Cukes trellised on some lattice

A few of the garden from the entrance
What you get, though is in what you give, and what I've got now are scabby apples, vine borer infested squash, baby squash bugs galore, and Japanese beetles everywhere!   Still, even with all these impediments, my garden finds ways to grow.  We have sunflowers growing everywhere and never planted one seed.  Ditto for the kohlrabi and turnips and radishes and most of the herbs, they do their own thing year after year, and I am glad for it- even if we don't get what we want, we still get something.  Life goes on, even when you don't necessarily even want it to.
Sunflowers and chives in the 3 sisters bed

Today, like I said, is a beautiful summer day, and unfortunately, I cannot spend it where I would like, out in the yard, or the pool, because this week is all about the cancer: today: MUGA test (or as B calls it, 'the Muggle test"); Tomorrow - Chemo Port insertion; Wednesday - Surgical follow up; Thursday - Plastic Surgeon follow up.  Friday, maybe, I will get a break.  I hope the beans can wait for me!
This is what you get when you neglect the bean patch for 3 days!

Sunday, August 14, 2011

summer in the garden with george

that is NOT a song title or even a song lyric...just popped in my head.  I'll leave it open to any wayward songwriters out there to use it for inspiration.

I'm sitting here putzing around on my computer because I'm a bit afraid of going out to the garden after several days of rain.  I know there were baby cukes galore out there a few days ago, and I'm sure I will get mobbed if I end up going out.   Still trying to lazy my way out.

I was looking at my other blog here on blogspot,...."simone says" that has oodles of pics of our garden "woodchuck farms" and it inspired me to get my camera back out, charge the battery (oops!) ....serious lack of use of REAL camera iphone works but not that great.  I realized that this summer I had really neglected the visual side of my garden.   Partly because it is crazy unmanageable....overgrown, over planted, under weeded, but my summer agenda sort of got messed up cuz of this crazy cancer thing!

Still, I love looking back at photos of how my garden changes every year....certain plants disappear, others blossom and spread, and I always forget to write down what I planted where, so photographic evidence is really important.

So, I went out and started snapping yesterday...then my camera battery died.  So I will continue out to take photos and expect to see some up here. Gardening IS therapy and as long as I don't overdo it on the weeds, then I will try and work out there as much as I can before winter is again upon us (it looms closer than I care to think~)

~go green

Saturday, August 13, 2011

Proof of prior blonde tendencies

This is me at around age 4 demonstrating my artistic prowess.

ps.  I have another Blog with some fun stuff in it, if you get tired of reading my shit about breast's called Simone says....and has pretty pictures of my garden, my pets and me in Fashion Boots the FIRST time around (circa 1978).

check it out, it's ooodles of enjoyment!

off balance

Interesting discovery and observation last night. (at least to me)

I was doing my pre bed time yoga stretching, and found, happily, my range of motion in my left arm seems to be improving a bit!  I can almost do a full 'sweeping' arm circle over my head, even if I can't stretch it as high as the right, that is a definite improvement.

After doing the standard floor work, I stood up and thought to myself, I haven't done many standing poses since my mastectomy.  Tree pose is one of my favorites, it makes me feel strong and powerful in my body, as I'm able to really use my core and balance for a long time.  Last night, I couldn't do tree with my left leg for anything...not even a modified tree with my foot on my ankle!!  Very interesting seeing as I am physically 'out of balance' having had one boob cut off.   Of course, I had just taken my cornucopia of evening meds, and that possibly could have kicked in and affected my balance, as I will need to try again when I'm less medicated to see if I have better luck. 

Obviously, it's another posture I need to work back into, and I'm thinking that with the slowly decreasing discomfort of the tissue expander, I may be able to go out to Cascade Yoga Studio  to take some classes in the upcoming weeks just to get a little more challenge, and maybe some new modifications to some familiar postures.

I've been kicking around the idea in my head for several years about doing the yoga teacher training, and I've always been fearful of it because of my RA, that I would be limited in my ability to do all the postures.  I know I can teach, I love to do that, but wonder if I CAN teach if I can't do.   I would love to be able to lead a class for people like me...going through changes in their lives and bodies and wanting to continue or start a yoga practice but not feeling confident that their new bodies can handle a regular class.

well...another realm of possibility to consider for me anyway.  I have the time now, but the funds are sort of tied up in the medical world at the moment.  Who knows what the universe will bring if I think on it hard enough, though.

for now, I will work on getting myself back to balance.


Friday, August 12, 2011

Chemo update and other tidbits

Met with the oncologist yesterday.  Results of the FISH and Oncotype DX testing came back confirming the HER2/neu positive results.  10 Year prognosis without chemo: 40-60% recurrance.  With chemo, 10-15% percent.  Not sure I love those odds even with chemo, but the choice to go ahead with doing a few rounds of chemo makes sense to me. I really don't feel like going through this again at 50!

1st Round: 4 treatments, 1 every 3 weeks.  Adriamycin and Cytoxan.  These are standard chemos and should make my hair fall out.  In process of scheduling my hair appointment so I can do the whole top part hot pink (to go with our Pink Arrow Pride football fundraiser on Sept 9th) The shirts are dark pink this year.

2nd Round: 4 treatments, 1 every 3 weeks. Taxotere and Herceptin. Taxotere is another standard chemo drug like the other 2 above, stops the growth of cancer cells, causing them to die.  May also contribute to my ongoing bald state.  Just in time for Halloween....Avatar, the last airbender..Ang costume is in the planning stages!! :)

After the 4 treatments of Taxotere and Herceptin, I will continue the Herceptin every 3 weeks for a year.  Herceptin treats the HER2 antigens, that I think of as my cancer 'instigators' and encourage misbehavior and mob mentality of those darn cancer troublemakers.  It's not a standard chemo drug, it's a biologic response modifier that will work with my existing immune system to team up with those HER2 receptors and kill any new cancer cells instead of encouraging them to grow.  This sounds a lot to me like how Enbrel worked for me when I was using it to fight my Rheumatoid Arthritis.  

Enbrel is an immune suppressant medications, and as soon a I found out about the cancer, they told me to stop using it.  Luckily, I've experimented in the past and found that I can go quite a long while off Enbrel, just managing the RA with another drug called plaquenil.  So, even though I haven't had any noticible swelling or inflammation, I do feel a little more stiff and sore in my hands and other joints in the morning when I wake up.  The chemo drugs work in a similar way by impairing the immune system, so going through chemo may very well help me feel better in the joint department as well.  Also, once I'm all done with chemo, I can resume taking the Enbrel if I choose.  Hubby is a little concerned because there are some studies out there in the ether that link Enbrel with developing certain types of cancer, but nothing conclusive at this point that links my Enbrel use with my breast cancer, so we'll have to take a closer look when it's time to look at resuming that into my personal pharmacy supplies.

Because the chemo is pretty harsh on the veins, and I've lost the use of my left arm for blood pressure, and blood letting, they are going to put a port in for my IV so I can just "plug in" when it's time for my Chemo sessions.  They should last about 3-4 hours for the first 8 treatments, and then after, the Herceptin wil only be around 1 to 1-1/2 hours long.

Haha, I have found a good picture on another blog that shows how I feel!!  
The Borg Port

Luckily, my friends keep having babies, so I will have lots of knitting projects to keep me busy during my down times....stuff like this hat I knit for my girl A in Lansing for her cute baby....
Cute Baby Alert!
After that, I will do a round with Tamoxifen, since I tested ER+ in the tumor.  I think standard is 5 years, but I haven't really asked too many details about this just yet.  I figure I have some time to worry about the details of that drug down the road a bit!
Cytoxen and Herceptin can damage the heart, one reason why I'm doing the chemo in two rounds.  I will need to do a MUGA test, similar to an ultrasound, to make sure my heart valves aren't being damaged during the chemo.  I have my baseline test this coming Monday Aug 15th, and I'll get my port inserted the day after, Tuesday the 16th.  It's a 4 hour outpatient surgery so that will keep me busy that day!
Wednesday I have my Mastectomy surgical follow up with Dr. Beane, my surgeon, and then Thursday I go to see my plastic surgeon to check out the football in my chest, I mean,  my tissue expander.  It's finally starting to be a little more bearable, though still painful and uncomfortable!  plus I think the nerves from my sentinel node biopsy are starting to come back, because the skin on the back of my left arm and the skin on my back have been really sensitive to touch these past couple of days.  I'm taking that as a good positive sign of healing, and just using OTC's, heating pads and ice packs to help with the discomfort. 
One thing I've been itching to get back to is my regular yoga practice, one reason I think I'm so achy is because I've had to give up my morning practice and I get stiff and sore, even without all the extra stuff I've been doing lately.  I've been trying to be consistent at night before bed to practice a little...I do a modified 'legs up the wall' posture, using my daughter's bed- it's the perfect height for me to bend my knees and also, their room still has carpet in it, while the rest of the rooms in the house are wood floor.  That is a good restorative posture because it helps with lymphatic fluid circulation through the body, very important because of the removal of some of those lymph nodes under my arm.  I also try to alternate some 'happy baby' pose to stretch out my lower back, and my hips, and then do a modified cobbler's pose, against the side of the bed.  Then I finish with some sitting leg stretches and hip openers and a couple of gentle spinal twists to make sure my organs are 'wrung out' and fresh blood is circulating through my body.  If I were REALLY good, I would do this in the am and pm, but most mornings have not been super great for me, so that is a challenge for me to work on incorporating more yoga into my day.  This tissue expander has made inverted positions, the ones I love, like down dog and standing forward bend pretty uncomfortable, but I hope to get back to them soon- I can tell that they will be good for my left arm rehabilitation and to work on getting those nerves and muscles stretched back out.
so... that is my update, I have to run, the new puppy is out next door, and I have to get some puppy love therapy!!!
(this is not the puppy, but a dead ringer for him)

oh...I found an actual picture of Koda.  He has more black in him then I remembered.    He is 8 weeks old and about 7 or 8 pounds...smaller than MY demon cat for sure right now...and ooooh so smooshie.  love to kiss his little saggy face!