Wednesday, September 28, 2011

play it again Sam, or...Once more, with Feeling.....

BLING from a long lost
High School friend.
I'm on my third week in the 2nd cycle of Chemo, and Monday started off promising, I had energy, I didn't feel queasy and lightheaded and I got some errands run and dinner cooked but by Monday night, my throat was sore, my glands were swollen and I was running a temp of 99.6.  Not enough to call the doctor but enough to make me feel crappy.  So it's been going on and off for three days now.  Same thing happened last cycle right around this same time, and the nurse at the Cancer Center told me it was probably a virus, no big deal.  This sort of stuff is what really gets me down.  No big deal translates into; "It's not life or death",  which is, um, comforting?...BUT ....it still makes trying to cope with all the other stuff pretty darn hard. I spend the first 10 days telling myself I just need to get through the first 10 days, then I will start to feel better and then, this....with another round of Chemo facing me at the end of it all.  It wears me down.

Additionally, I think I am fighting off a urinary tract infection. Luckily I keep uristat pills on hand all the time.  It hasn't gotten bad enough to call the doctor so I'm just self medicating and trying to drink a lot of water with lemon juice to flush it out.  My girl K from ME gave me a tip about D-Mannose, which is supposed to be a natural remedy for UTIs.  I may have to drag myself out to Harvest Health to check it out.   Cytoxan, one of the Chemo drugs in this round, irritates the bladder, which can lead to cystitis, basically an incurable condition that feels like a bladder infection - something I'm vigorously trying to avoid.

ok.... got the bitchy chemo stuff out of the way...on to happier things!

My Seestor and me at Race for the Cure 
This past week was busy for me, lots of things going on.  Saturday was Susan G Komen Race for the Cure.  Team Lou Lou raised almost $3000 so far!  There were a total of 6000 people there- it was a tad overwhelming.  I ended up doing the 1 mile community walk with my son, oldest step-daughter and my BIL and his wife (who was knitting on a cable knit hat for me the entire time!).
That took a lot out of me, so I'm glad I didn't try to do the whole 5K. It was very cool though, and I definitely want to do it again next year, and do the whole thing.  My seestor and her girls are plotting some dazzalicious team outfits that I'm trying not too think to hard about.  I'm expecting sequins, feathers, tutus, capes, tiaras or a combination of all. we'll see what happens.....

Sunday, my girl K from work had her baby shower, and I didn't want to miss that for anything! I got to see my best girls from work plus oooh and ahhh at all the cute baby stuff, which I also love to do. I knit up a cute little baby hat in MSU Spartan colors so little baby H has appropriate attire for game days or any other day.  Here's a snap of the hat pattern, modeled by my ridiculously cute little niece, Ellie...The one I made for baby H was dark green, heather grey and sage green stripes with manly i-cord tassels instead of girlie tassles.

Inspired by it's cuteness on baldy babies,  I worked all day Friday to make a grown up version in  pink and grey stripes for my bald head to wear on race day. But, in my usual way of just winging it, it turned out ridiculously tall and poorly fitted, and I didn't have the time or heart to try and make it right at 8pm the night before.  I'm on my second rip back and it still isn't right.  I will need to rip back once again and try to turn it into another little baldy beanie and then go back to Ravelry and find a real pattern if I want a fancy hat.

Now that the weather has turned a bit chillier, I'm finding my one warm hat is not sufficient and CERTAINLY not appropriate to be seen in public.  I really was loathe to wear it to the race, but lacking any other warm options, I had no choice. A friend of my seestor made a polar fleece pink ribbon scrunchy turban for me.  It is really warm, but a tad bit too big to wear on my bald head right now- I'm wearing it OVER my other hat in this snap. I'm channeling my inner GURU (tho hubs says I look like a creepy pedophile...?!) I'm wrapped in a Pink and Sparkly wool shawl, compliments of my Indian friend S, who sent it to me from Houston. Plus don't forget the pink feather boa --a REQUIREMENT for Race day, of course--- from my girl S in Indy. Trust me...this was a pretty mild look for the event.  I almost wish I had skipped the race entirely, and just spent the time taking pictures of all the outrageous and fabulous outfits that I saw there.

Yesterday, I visited the Gilda's Club Clubhouse in Lowell and was 'orientated'.  Now I can go to support meetings and other happenings there. This clubhouse was funded by the Pink Arrow Pride II event and shares the old victorian house in town with the Lowell Senior Neighbors.   They also have the big clubhouse in downtown GR, but it is at least a 30 minute drive downtown, so I wanted to check out the haps locally first.  I found out there are a few other women in the support group with breast cancer, so it may be a good place for me to meet some of my community who know what this crap is all about.  I have an awesome support group, but I'm of the opinion that you can never have too many friends.  This entire journey so far, I've tried to dedicate to taking risks and opportunities that I would have avoided in the past, and one of them is putting myself out there in order to meet new people.  You never know what lessons they may have to teach you.  I couldn't make the support meeting last night as my son is headed off to 5th grade camp today, and I wanted to make sure I had time to get any last minute packing done.

Today is a free day, I'm still running a low grade temp, my glands feel like a swallowed some golf balls, and I've once again gotten an itchy rash on my neck and wrists.....what the cabbage, dude?!

It is a grey day, so I think I may try to lay low today and maybe start watching LOST episodes on Netflix, since I missed the hooplah when it was actually running on network TV.  Hubs has a cold or something, so he is feeling pretty mopey as well. I'm telling you, it is a regular laugh riot at our house this week.

Tomorrow, I meet with the plastic surgeon for a follow up.  At this point in time, I want nothing to do with him- I don't want one more needle, scalpel or anesthetic anywhere near me!  But I do want to talk about how long after chemo do I need to wait to do the reconstruction and what I can expect it to look like and feel like. I can't even bear to think that I will have Robo-boob for at least another 6 months, and I'm very worried that the pain and discomfort that I have in my pec will not subside even after the expander comes out and the new boob is in.  It makes me wonder if it will be worth going through 2 or 3 more surgeries-definitely NOT what I was contemplating when I envisioned new boobs for my birthday!

Wow...that is a lot of stuff going on, and I thought I didn't have enough to write about!

There are so many cool little things happening in my life right now, sometimes they get lost in the murky waters of this giant pool of suck.  I got the cool sparkly ring,  pictured at the top of this post, last week from my girl M in CA....a long lost high school art class chum.  My neighbor friend came over last week to help me prep my garden veggies for the freezer so that they didn't all turn into slime in my fridge from lack of effort, energy or appetite. Then she did my dishes and cleaned up my kitchen!  I had 5 friends call me last week to see how I was doing...even though I didn't get to talk with all of them, the fact that I know they are out there and thinking about me helps so much. Another friend of mine, whose twins are friends with my son, dropped off a bag of groceries for me, with juice, protein powder and peppermint candies to make sure I get through my queasies well nourished.  Additionally, I got a wad of gift cards to Meijer as part of the Lowell Community Support program, another program funded by our Lowell Pink Arrow Pride organization.  Lastly, I spoke with a professional fine art photographer, a woman who was in hubs Yoga teacher training class, and she is putting together a collection to showcase the strength of cancer survivors and wants to include me in the photos.  I'm a little nervous about it, since I'm horribly unphotogenic, but I love the idea and want to be involved in the effort.

These last few weeks have been really bad for me, the chemo's disruption of my hormones add to my already addled psyche and the stress of dealing with illness, sleep deprivation and the daily grind just pile up until I feel totally overwhelmed.  It helps to remember that there are people out there who are thinking of me, friends and strangers alike, who donate their time, money, talent, and energy to show that I'm really not alone in this journey I'm on.  I'm so thankful to all of them.

Namaste




Friday, September 23, 2011

It's the small things

Chemo comes at you from all sides:

How is it fair that I'm losing the hair on my head, but I still have leg hair and chin whiskers???  Really...Chin Whiskers?!  On the flip side, when I went to pluck it, it kind of just fell out.  I'm not sure if that made me feel better or worse.  I'm protesting shaving my legs on principle. I figure I may as well have some hair somewhere.



Tuesday, September 20, 2011

"I am not a pretty girl...


"..that is not what I do
I ain't no damsel in distress
and I don't need to be rescued
so put me down punk
maybe you'd prefer a maiden fair-
isn't there a kitten stuck up a tree somewhere?"

~Ani DiFranco


In Gleek speak, I guess you could say this song is one of my personal Anthems.  Hubby calls this my 'angry bitch music'.  I think it's pretty fitting for what I'm going through right now.


This has been a rough week.  I expected that chemo would be hard, physically.  I also know, logically, that I will not feel this crappy forever.  I thought that I was mentally prepared to face this ordeal.  I didn't fully realize that in addition to killing off the cells in my body; in my blood and bone marrow, in my hair, my skin, my mouth, my throat, my stomach; that this chemo would suck the strength and hope out of my spirit.  I am feeling defeated.  


This is the part I did not want to face. As my body grows weaker, so does my resolve.  Some days I feel like I am not strong enough to make it through another week feeling this way, let alone 4-1/2 more months...and that is just the beginning of it.  I still have another year of IV treatments after with a biologic drug that will mess up other parts of me, then another 5 years of hormone therapy.  I haven't even looked at what to expect with those.  


I read through my 'chemotherapy and you' manual again yesterday, read about all the crap that chemo does to your body.  I have been concentrating on the physical aspects of this treatment - most people can relate to feeling physically crappy - and ignoring the mental.  It's all just a state of mind.  Power of the positive. psyche yourself out. om. 


Yesterday I gave up.  I can't do this on strength of resolve alone. I start on anti-depressant medication today - again.  One more chemical to help my body do something it can't do on it's own. This is the part that no one wants to talk about, but nevertheless is yet another piece of this monster that I am dealing with. 


Physical illness is one thing; acceptable, safe. Mental illness is completely different. People don't want to talk about that. *I* don't want to talk about it.  I can put up a pretty good front.  I hoped that this experience was the catalyst I needed to get my brain out of the dumps and kick it to the curb.   I went off my anti-depression meds AFTER I was diagnosed with cancer.  And up to this point, I was feeling pretty good about it. Confident that I could handle anything this bitch could throw at me.  I knew she fights dirty, but didn't fully comprehend just how low she goes- way, waaaay back to the very back of the closet.  I think I gave away my hope stone too soon. I had hoped I didn't need it.  ha...ha..... ha.    Luckily, I have some new little pink ones in a bottle waiting upstairs for me.


---


Not wanting to leave this post on a completely low note, I want to share some coolness in the midst of this giant pool of suck - the Susan G. Komen Race for the Cure is happening this weekend.  I have a team of 27 people so far that are showing up on my behalf.  I am shocked and awed by this.  Our team has raised over $2100 so far- to contribute to the overall W. MI event goal of $500K. 


The Friday before my last chemo session, my girl K, from work, called me up with some unexpected news.  A manager at my company had heard about me and asked if the running team there could join my team for the race.  One of the presidents contributed money for pink company T-shirts, which they are selling to raise more money to donate in my name.  People I don't know, showing up on my behalf to raise money for the Cure.  Amazing. Inspiring. I'm looking forward to it. hmmmm....... I guess there is a little hope in that bottom drawer of that old dresser in the back of the attic after all.

I don't have my new pink Komen shoes yet. Probably won't have them in time for the weekend.  But I do have some spiffy new laces for my old pair to get me through, compliments of my girl J, from Shelby Twnship, who sent them to me on her Aunt's (a BC survivor) behalf.  Thanks to all the people  out there who rooting for me right now. 





Saturday, September 17, 2011

Going...going...gone

I  have been bald for a week now. It sucks.

Getting ready for the Pink Arrow Pride Game.
Hair is falling out bigtime!





At the game with my family


I thought I was going to be ok with it, I really did.  I thought that all the work I had done before, cutting off my hair, bleaching it platinum, dying it hot pink- would give me control over being bald, but it didn't prepare me for this.

Despite what people may think or how I act, I'm actually a rather shy, insecure person. Going really crazy with my hair was way out of my comfort zone, and gave me some confidence and bravada that I was really the one in control of this whole experience.  And while I had my hair, I felt that feeling would last through the whole journey.  I didn't anticipate the sucker punch to my ego of feeling physically shitty, then looking in the mirror and seeing myself bald.  I look sick, I look old, I look....bad.

My darling son told me the other day: "I don't think you look bad Mom, you just look like...you".  This of course warms my heart; he has been so cool through this whole thing.  Then he tells me he can't remember what I look like with 'normal' hair.

In the week between today and last Saturday, between being hairy, and being bald, I have had another round of chemotherapy, and I know this is contributing to my feeling crappy.  I have a slew of  'little' issues that just niggle away at my well-being and drive me crazy.  There is saying that I love, from the show "Jon and Kate plus 8"  (before they went really nuts); Jon says "It's like being pecked to death by ducks".  Annoying and slow. All the little things that add up to one big annoying pool of suck.  Things that don't count as serious 'side effects' of chemo, yet nevertheless must be dealt with in addition to everything else.

1. Once again, I have hives after chemo. A lovely rash on my neck and arms and a little on my face.  I made sure that I didn't use anything new or weird right after chemo, and made a point to shower right after I got home.  They are less severe this time than last, but still there, giving me one more thing to be uncomfortable about. One more chemical to put on my body to try and get relief.  I told my oncologist and nurse, and they just shrug and say.."hmmm, weird".

2. My port 'suture' incision is irritated. I have two scars on the right side of my chest (just to make sure that I have NO comfortable sides). The large one is right above my chemo port and in addition to having this huge 'goiter' thing sticking out, there is a nasty scar right above.  At the end of all this, I get to be cut open again and have it removed.  Leading from that is my catheter, which is then sutured into the vena cava, right about where my collarbone is.  It doesn't feel good, even after more than a month - I have a big tube sticking in my neck and I can feel it!  On top of that, since the weather turned colder, I have been wearing less tanks and low neck tees, and the scar over the catheter is getting rubbed raw by the higher necks of my t-shirts. There isn't much I can do about it, other than stick a band-aid on top to keep it protected.  My chemo nurse offered to call the radiology department to see if they can or can't do anything about it, but to tell the truth, I'm really not up for more surgery, and even less up to someone telling me there is nothing they can do about it.

3. I have acne. My immune system is jacked up, and my hormones are going crazy- on top of everything else to deal with, I have bad skin.  I go from bumpy to extra dry and scaly back to bumpy.  ugh.  I don't even know what to put on my skin right now- does the wrinkle cream go on top or under the zit medicine?

I know this first 10 days are the downhill slope of chemo and then, I'm hoping, like last time, to slowly start to return to feeling 'normal', which has, in and of itself, taken on a whole new meaning.  I don't feel normal, I feel a bit like Frankenstein right now. I can't imagine how I will ever feel normal again.


Getting ready for 'the shave'


A brief break to appreciate a real mohawk


Bald!

Monday, September 12, 2011

"That girl is poison..."

Round 2 of Chemotherapy this afternoon..."DING".  


To say that I'm dreading today would be an understatement.  


The first time I didn't know what to expect, and while overall, I'd say that the entire cycle was not as horrible as I expected, that first night after was really, really bad.  I've changed my anti-nausea drug to a stronger one, and will take it when I'm done, rather than waiting until I start to feel bad.  


Additionally, I have a school meeting tonight, too, that I need to go to, to learn about 5th grade camp that C is going to in a few weeks.  B can't go because he starts soccer practice tonight.   Miraculously, life continues around me, even when I feel like mine is at a standstill.


I'm not even sure what to write about sometimes. Sometimes I don't write in my blog not because I don't have anything to say, but because I have too much.  Do I write about how different my life is since I was diagnosed with cancer?  And yet, it is not so different. I still have to wake up (even if I don't GET up), laundry still needs to be done, bills to be paid, children, dogs and cats to be taken care of, homework to be checked, etc, etc.  So, having cancer didn't change things much.  This is a temporary speed bump in my life, if I choose it to be so- I just need to keep going and pretty soon this whole experience will just be a memory.


The problem is that cancer changed everything all at once, and then continues to insinuate itself into my life on a daily basis. How can I NOT change my life as a result of this experience?  I experience everything around me with a new perspective.  I cannot bear to go through another 5 months of being poisoned for nothing.  


I pray for clarity of purpose.  I do not know what I will be in a year. I want to believe that my new life plan will slowly unfold over these next long months and my job is to keep my eyes open so I don't miss the opportunities that rise up in front of me.  I must believe this, or I cannot go on. 


"Our deepest fear is not that we are inadequate.  Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that most frightens us."
 --Marianne Williamson




Sunday, September 11, 2011

A prayer for peace today

image courtesy of  http://vicpeace.ca/vpc.gif


From his holiness the Dalai Lama, in his book, "How to Be Compassionate".

"If we allow love and compassion to be dominated by anger, we will sacrifice the best part of our human intelligence - wisdom, which is our ability to decide between right and wrong.  Along with selfishness, anger is one of the most serious problems facing the world today...These conflicts arise from a failure to understand how much we have in common.

"Answers cannot be found in the development and use of greater military force, nor can they be purely political or technological. The problems we face cannot be blamed upon one individual person or a single cause, for they are the result of our own negligence.

"Hatred and fighting cannot bring happiness to anyone, even to those who win. Violence always produces misery, so it is fundamentally counterproductive."

"The sale of weapons, thousands and thousands of types of arms and ammunition by manufacturers in big countries, fuels the violence, but more dangerous than guns or bombs are hatred, lack of compassion, and lack of respect for the rights of others.

"External peace is impossible without inner peace. As long as hatred dwells in the human mind, real peace is impossible. We can only solve our problems through truly peaceful means--not just peaceful words, but actions based on a peaceful mind and heart.  This is the way we will come to live in a better world."

So my prayer for the world is to bless everyone with a peaceful heart and mind today.

Amen.

Friday, September 9, 2011

Dandelion Head


"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror.  I can take the next thing that comes along'. You must do the thing you think you cannot do." -Eleanor Roosevelt.


My hair officially started falling out Wednesday - day 16 - after my first Chemo treatment with Adriamycin and Cytoxan.  I have been trying to hang on to hair and color until today, the Pink Arrow Pride Football game. The color is fading, but still obviously pink, I'm not sure what is going to happen when I wash it today.  I feel like if I sneeze hard enough or get out in the wind, it will all blow away just like a dandelion gone to seed.  I have to admit that I thought I was prepared to lose my hair.  In reality, I think I was prepared for being bald.  Two totally different things.  Having my hair fall out in handfuls is really demoralizing.  As if all the other things that I've endured and survived is not yet enough.  If not for the game, I would have shaved it off Wednesday to avoid this whole experience, but my stylist talked me into holding on just 2 more days and then we will shave it after the 5K run on Saturday. No need to tell anyone that I am undergoing chemo.  One furtive look and they will know. I think this is what bothers me most about this whole cancer experience, and why I have been so open in talking about the fact that I have cancer.  I don't want people pitying me, or whispering before I come into a room or after I leave it.  I want people to know that I am dealing with this thing, and THIS is what cancer looks like.  I'm sure that once the hot pink fauxhawk is gone, I will figure out another way to flip cancer the bird, I just haven't figured out how just yet.

Me and Mom and Pink Arrow Jersey Auction.


So...tonight is a big night.  This year is the 4th Pink Arrow Pride game, and obviously the one I will probably remember for the rest of my life. Additionally, ultimate coolness, NBC Today show is coming!  Lowell will be on national TV for a few seconds, and for something GOOD.  This project does so much good for the community.   I'm proud to be involved with it, albeit, minimally this year. I am thinking that I want to volunteer with the project next year.

My mom's quilt was quite a hit with the coach and the volunteers, they decided to keep it for game day raffle rather than auction it off to the small number of people attending the Jersey auction. Additionally, she will get a little blurb in the program tonight about why she made it, and what Pink Arrow Pride means to her.  I'm totally excited for her, she does such beautiful work, and I don't know that she has ever sold one of her quilts, she always gives them away.

I decided this was not the year for me to get a football jersey.  Too many medical bills, and I can't seem to think about the whole thing without tearing up. every. single. time.  So, best to go as a supporter and maybe next year I will see if I can raise enough money to get one. The least expensive one went for $500 this year, so I have a little fundraising or saving up to do if I want one.

 My fundraising efforts this year went to Susan G Komen Race for the Cure in W. Michigan.  Our team has raised $1860 so far!  That exceeded our $1200 goal!  Additionally, both B and I met one of their weekly challenges and each won a pair of free new balance shoes!  (Mine are PINK)

 B's are Red and Silver....Lowell Red Arrow colors!!  I don't think we will get them in time for the race, but my girl J from Shelby Twp, sent me a care package of lovely pink ribbon jewelry AND a pair of bright pink shoelaces from her Aunt, a BC survivor!  So, I will definitely be pinked out for that.

My last week has been up and down.  My energy level started going up after the 10 day mark, but then I got a viral infection on Monday- swollen glands, sore throat, and low fever - that knocked me back down again.  After laying very low this week, AND managing to free up some knitting needles, I'm starting to feel better...just in time for my next Chemo on Monday.  I have a stronger anti-nausea med this time around - Zofran...so I'm hoping and praying that I don't get a repeat performance of 'the night after Chemo'....shudder....

In the meantime, I did manage to finish up a hat that started life as an infant hat...not sure what happened, but when I dragged it back out on Tuesday to see if I could salvage it for someone's little girl, I found that it fit me!  Ironic that the next day I realized I had better finish it up quick so I have something to put on my head!
My girl L called it my 'baldy beanie'.  It turned out pretty cute, and matches my current hair perfectly, though I think I look pretty dorky in it. It is organic cotton yarn, so soft and cozy for my tender head right now.  I'm pretty sure I will need a few more to get me through the next 6 months!  Better get to it, then!

my Baldy Beanie



Wednesday, September 7, 2011

Hamsa

"My dear friend,

"These ladies have come to bring you this ancient and venerable hamsa.  The hamsa/hamesh or "Hand of Fatima/Mariam/Mary" is recognized by all people of the Book. It's symbolism and mystery date back as far as Mesopotamia.

"The hamsa is a symbol of the strength and protection of women for women.  This hamsa was held by women for untold time in their homes of Egypt, and it protected them from the evil eye.  It then was carried from there many years later and came into the hands of one of my teachers, Aida al Adawi.

"From her hands it was passed to me a decade ago and was adorned with the beads you see with it now. We took this powerful amulet to a dear friend who needed our love and support when we could not always be there with her and she carried it with her to her treatments, and held it until she was well again. And then, when she was strong, she brought it back to me in order for it to be passed on yet again. I myself held the hamsa after the loss of my mother and now I am strong again and ready to pass it on.

"We bring this to you here to have you take with you the love and support and blessings it represents, from woman to woman.  When you have gained the strength you need and are ready, we will again take back the hamsa to be passed along to another who needs that protection. Only you will know when it is time, there is no predestined date. Only a sense in your heart and mind that you are ready to pass the amulet on.  We love you and hold you safe in our hearts and minds.  And so it will continue...

"~C"

Are my girls awesome or what?!

Saturday, September 3, 2011

"This is our lives on holiday." ~Green Day

My son has been listening to about 5 songs non-stop over the past few weeks on my iPod while playing video or computer games- Breaking Benjamin and Green Day...so I pretty much have all the lyrics memorized by now.

However, I thought it was a fitting title for my post today.  I have met some truly wonderful people on the website ihadcancer.com.  This is a support site for cancer fighters, survivors and supporters.  Through it I have met people from all over the world that have been there for me throughout this journey.  People whose lives have been touched by cancer in some way, and want to be a part of a bigger picture to reach out to others who share a similar story.  People I can rant to in the middle of the night when I am feeling angry, sad, or whatever. Who tell me to hang in there, keep fighting, things will get better.

My girl K, from ME, is one of those people.  She is going through similar treatment for her cancer as I am for mine.  We had similar surgeries - she is my cheerleader for this damn roboboob of mine when I feel like I can't stand another second with it inside my body.  She is going through chemo now, the same two drugs, but on a faster schedule, AND she is working through it all.

I, on the other hand, am not. Working.  My life at work was so stressful prior to finding out I had cancer, I can't even imagine trying to deal with going to work AND taking care of myself during this whole thing.

I would like to point out that not working during chemotherapy is NOT the same thing as being on vacation. Even if I talk about trying to do a bunch of stuff around the house to keep me from going stir crazy.  Half the time I don't even have energy to watch TV! I just end up laying in bed staring at the wall or the ceiling.

My girl K pretty much summed it up to me in an email the other day. I don't even want to paraphrase it because it perfectly expresses what we are going through just the way it was written:

"I would never, ever want this to happen to me or anyone else I know. Even my worst enemy. This is the biggest pool of SUCK. This is no luxury! We've been told we have cancer, which is a huge, horrible blow in and of itself. 
Then we have body parts cut off and foreign objects sewn into us. Now we have to be POISONED on a regular basis and feel like shit and lose our hair and look like shit. And some of us have to get zapped with radiation. And have another surgery. Then have constant checkups. And then worry for the rest of our lives that this shit is going to come back.  But still have somewhat of a normal life while all of this is going on: chores, be a mom, be a wife, keep up the house, etc. etc. You are not on a vacation. Just because you're not working somewhere out of the house doesn't mean that you aren't working at all."


I told you she rocked, didn't I?  Bless you K, and all the other women AND men in the world who have to deal with this big pool of SUCK. I will pray for you all.


~namaste~

Thursday, September 1, 2011

10 day check in

Well I made it to my 10-day post chemo labs.  Supposedly, this is the lowest my white count will drop which means, hopefully that I will start to slowly gain energy over the next 10 days to get ready to do it all over again.

This week has been a rollercoaster of events and emotions, and I haven't had the energy to post anything new except my little angel that helps me Be Brave.  I want to write a super cool, awesome post about my fabulous Saturday night Birthday Bash with Djinn, Beatbox Guitar and Bellyqueen, but I want to do it on a day that I have energy and can do it justice, so stay tuned.  The outcome of all that is I actually took the shrink wrap off Carmine Guida's Begintermediate doumbek, so maybe once my energy comes back up, AND Connor goes back to school, so I can have the TV, I will start practicing my rolls, pops and fills.  Drumming and bellydance music, and dancing bring so much joy and energy into my life, I think I definitely need to up my dosage! Here is an example of the fabulous talent we got to experience live on Saturday: http://www.youtube.com/watch?v=pR1GQCYhXzs.  I highly recommend watching, it will have you mesmerized.

I'm also trying to lower my med load, so I've been reducing some of my nightime sleepy meds, with the result being, I was awake most of the night last night.  sigh.  I did stop drinking coffee in the am, it makes me queasy even thinking about it, so I figured I may as well go off caffeine and see if that makes a difference.   If I can make it through today, without napping, then maybe I can keep it up. I hate being completely dependent on chemicals to keep me going around in my amazing lifelike state. ha.

My best girl M from high school called me yesterday, she lives in Colorado and we haven't seen each other in 20 years, but we recently caught up with each other, thanks to FB, and it makes me happy that in the midst of this Cancer experience, I get the opportunity to re-connect old friends and family relationships that have frayed over the years. I told her I was feeling pretty wiped out this week and she recommended soaking in an epsom salt bath - it restores Magnesium.  This is something new to me, so I thought it would be interesting to try it and see if it makes me feel any better.  I've been craving salty food since Chemo, so I'm thinking that I'm low on electrolytes or something, so I've been eating stuff like rice in broth with Dulse (seaweed) flakes and Kale Crisps (a la Molly Katzen).

I have so much food in my house right now- between fridge pickles and homemade jam, plus some big batches of dishes I've made that we've been eating; but just don't have enough people in the house to finish it all. I think I have lost some weight since Chemo, and I just can't afford to drop anymore, unless I plan to go as Skeletor for Halloween.

 I inventoried my pantry and cupboards on Tuesday and I'm convinced that we could live out of our pantry and freezer for at least 6 months, and probably closer to a year. Luckily it's coming on Fall, and I love to make soup with whatever I have, so I will definitely be working out different grain/bean/veggie combos in the coming weeks.  We also have a 20 cu. ft. freezer that is filled with organic local meats and veggies from our garden and fruit from the farm stand down the road.  If the zombies come, we are ready!

To add one more thing to The List of things that suck right now. Hubby got the results of his thyroid scan today and called me to tell me there is a 'mystery nodule' or 'suspicious lump' or something like that on it.  So, he gets to go to the Endocrinologist and have it checked out. Perhaps biopsied.  This is starting to sound a little like deja vu.   He tells me the GOOD news is that no one actually dies from Thyroid cancer.  Joy.

I don't have anything peppy to say about that right now.  I still need to go figure out what the heck they are talking about and try and figure out what the cabbage is going on.  We can only hope for the best and deal with the reality and keep trying to move forward. So here's to hope.