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!

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 equipment...my 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

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 cancer....it'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 well...so 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 shala...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.

~namaste~

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.  http://www.pinkarrowpride.org/

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!

queue the pin?

I woke up this morning around 7am from a pretty bizarre, gory dream -involving vampires and ridiculously high interest rate loans- to complete quiet.  It took me a minute to realize why it was so quiet.  "The power is out" my husband whispered to me- which explained why the four-(yes-FOUR)  fans in our bedroom were not making a sound.  "There aren't even any birds singing" I whispered back. Even the lone cricket I heard didn't sound super enthusiastic about breaking the unaccustomed quiet.  There weren't even any cars driving on the main street thru our town, 2 streets away.  It was very surreal.  

We live in a 115 year old victorian house without central A/C.  The main part of the house is plaster, and the windows are Andersen replacements, so as long as we shut the house up early and close all the draperies, then we can usually keep the house cool with a few window A/C units, the ceiling fans and some strategically placed box fans. 

This past July in Michigan was one of the hottest on record (that's my unofficial determination, cuz I'm not feeling ambitious about looking up the actual statistics) so we kept the house shut up even after the sun went down, which is not my preference.  This week, it's been hot during the day, but cool enough to open the house up after sundown, which means, all the ceiling fans go on, the a/c units get turned to fan setting, the box fans go in the window...and as if that isn't enough white noise, we also put the air filter on in our room, because we like the background noise of that.   Bottom line- we do a lot of yelling in our house in the summer, because there is so much ambient noise, none of us can hear anyone else, even in the next room. (Though, sometimes I think I can hear Beatles songs, but I think that is a story for another day).

Waking up to absolute stillness was an intriguing sensory experience. I could hear the neighbor clearing his throat on his porch across the parking lot.  The squeaky bicycle someone was riding up the street.  In the distance, the hum of the big mill that apparently didn't lose it's power.  I laid in bed with my husband and listened to the unusual sound of a quiet summer morning and waited.

Waited because we live on a river, and it generates the town's power supply (thanks to the mill), so we are rarely without power.  The few power outages that we get are typically brief and not usually caused by local weather conditions.  So, I knew that the quiet I was experiencing was short-lived.

The second thing that happened to me this morning after I woke up is that I tried to move.  This is generally a bad idea recently because of the cursed tissue expander in my chest, and specifically because I spent the day weeding my neglected garden yesterday (remember-hottest July and all?) and think I probably over did it. 

It hurts to lay down, it hurts to sit up, it hurts to roll over, it just hurts.  It hurt for me to sit up so that I could take a percoset that I've been keeping by the side of my bed now, because I know I will wake up in pain.

I keep thinking that this must subside at some point, and I suppose, at some point it will, but the waiting is painful, literally and mentally.  I am doubting my decision to do this to myself, my vanity - to get perky new boobies! versus just having the breast removed.  I was aware that reconstruction can come later, but I was also aware that delaying that option still involved pain, potentially more than what I am experiencing now, plus another surgery and hospital stay.  For all intents and purposes, I chose the least painful reconstruction option.  I can't imagine having done this to both sides (which was an option open to me). 

I saw my plastic surgeon last week and asked him when it would stop feeling like I had a 6 slot toaster in my chest.  He smiled and said....well...it will pretty much feel like that until you take it out!  This is not the answer I was expecting or hoping for.  I wanted at least some indication that it might start to feel like a 2 slot toaster at some point in the future and I could stop living from percoset dose to percoset dose.  It doesn't sound like that's going to happen, for awhile yet, so I guess the only thing I can do is wait.

I'm glad I had a little bit of waiting this morning to enjoy the real sounds of a summer morning while my percoset kicked in....trying to pick out every distinct sound as it happened.  What bird is that singing? Which neighbor is that coughing? which car is that leaving for church? 

Then, as I expected it would - about 45 minutes after I woke, there was a click, and all the fans hummed on, a cool breeze washed over me and I realized that it was time for me to get up and start my new day.

1 week post mastectomy, still in love with Mr. Percoset

I have been laying pretty low since last Tuesday's surgery.  I had left mastectomy and tissue expander for my saline implant.  I was expecting it to go pretty well, I had heard the sentinel node biopsy pain was way worse.  This hit me like a mack truck!  more like a team of football players carrying a mack truck! 

I was in the hospital from Tuesday thru Saturday, mostly because they couldn't seem to get a handle on my pain meds.  Now I am home, and today is the first day that I got out of bed without taking a percoset first.  Drank a cup of coffee, sat outside to enjoy my garden for a bit and THEN went and took the percoset. 

but it's an improvement.

mostly, I needed to get out of bed to wash my sheets, my manky surgical bra and the cancer quilt I had with me in the hospital...so, I have to stay out of bed until at least the washing is done!

I think the most pain that I am experiencing is from the expander, I feel like there is a full size football stuck in my chest! (all these football references...can you tell it's getting to be that time of year in my small midwest town??)   But really no other way to describe it. I'm hoping that every 'expansion' will not feel this bad, that this will be the worst part and over and everything else a cake walk (preferably, with cake).

I go to see my plastic surgeon on Thursday, hopefully will take this stinky drain out and I can go about feeling a little less like quasi modo.   Next week off to see the oncologist to tell me what's the haps with chemo.

so...for now, that's about all the excitement going on in my life...percoset, valium and waiting for the spin cycle to be done. 

I think I will go have a brownie for breakfast/lunch

 yey! cancer is fun!