What to say to someone diagnosed with Cancer...

Because I just ran into another woman yesterday and one the week before who is going through this or has gone through this giant pool of suck.  I swear, I sometimes feel like it IS catching!  Crazy Sexy Life said it perfectly here...http://networkedblogs.com/pH9aG?a=share&ref=nf

Thursday

Today, my house almost burned down.

Well, it could have, but it didn't.  Actually,  my dryer lint filter got so plugged up with lint from an old chenille blanket, it shorted out the motor and charred the inside of the dryer.  My hubs smelled the smoke while he was outside hot-tubbing with our son.  My nasal membranes were fried from the fumes of the drying garlic in the oven, so I was blissfully unaware of the shananigans going on in the laundry room.

charbroiled laundry!

Sometimes, the universe bumps us a little bit just to remind us to slow down, pay attention, and oh yah...clean out your dryer ducts every once in awhile!

Thanks, universe!  (can you swing me a good rate on a new dryer, though?)

classing up the neighborhood!

Wednesday...

Today is an uneventful day. That, for the Wednesday after a Chemo treatment is cause enough to celebrate.  I feel good this week.  Maybe the fortune cookie gods were right, my luck IS changing?  I had 2 good weeks prior to the 4th session of A/C and a couple of good days after. I'm counting my blessings.  Today, I went to the grocery store to buy winter clothing supplies for my son, even though it is almost 60 degrees outside and sunny!  It felt nice to drive with the window down, and the radio up! I feel blissfully almost normal today.

So...a short little post in celebration of a good day.

I get knocked down, but I get up again...

Sundays have always been hard for me, since I was a kid.  I remember when "60 minutes" came on at 7pm Sunday night. The ticking stopwatch an ominous reminder that my free time was coming to a close, and that pit of anxiety in my stomach--the unfinished homework, the start of another week of school.  That feeling returned when I started working a 'real job', the Monday through Friday, 8 to 5, kind.  I can never really enjoy Sunday afternoons and evenings because of the knowledge that another long work week lies before me.  Now, ironically, when I have no work week to dread, I still have Monday as my Chemotherapy day.

Tomorrow is my last treatment with the Adriamycin/Cytoxan regime. I am almost done with my first stage of treatment. I am excited, of course, to be finishing up getting dosed with these horribly strong poisons.  At times, I just find it ridiculous that the "cure" for this disease seems to be worse than the disease itself.  Especially since I was told my tumor was completely removed during my mastectomy.  I wonder what quality of life I am giving up to gain more quantity, and if it is worth it.

Last week, against my better judgement, I checked out a book from the library called "I Am Not My Breast Cancer".  I was looking for the book about emotional healing I found on Lena's blog My Personal Lens. Unfortunately, it wasn't even on the inter-library network, so if I want to read it, I will need to buy it. I haven't read any books about breast cancer since I was diagnosed, except for the Susan G. Komen breast cancer manual my surgeon gave to me on the day I was diagnosed, and the pamphlets on chemo side effects.  This is in direct contrast to my normal behavior, in that, when I get interested in something, I must find out everything I can about it; internet, books, whatever.  I guess the key word here is 'interested'.  I find that I really DON'T want to read about all the horrible things that might happen to me during this whole experience. Even listening to survivors telling me about what happened to them during their treatments with the drugs that I'm using or going to have to use doesn't appeal to me.  Am I in denial? I don't think so. I just don't want to front load my already anxious brain with things that may or may not happen to me.  If they do, I know I will deal with them, but I don't want to THINK about it before I have to.

The book "I Am Not My Breast Cancer" is a compilation of hundreds of women's thoughts about their experiences with breast cancer.  I read it in three days, and I cried for three days.  The stories in it are both positive and negative, happy and sad, joyful and painful.  I could relate to some of the experiences relayed, and was appalled by what other women had to endure. I cried for both myself and for them.  Additionally, the fact that I'm so grateful to be finishing up one cycle of hell is tempered by the reality that I have 3 more to endure.  I have up to this point been happily oblivious to what comes after January.  Now I know, and it fills me with dread.  Most everything I read about the effects of tamoxifen, an estrogen suppressant that I will need to take for 5 years because of my estrogen positive tumor, is horrifying to me.   I realize that most of my friends and family are looking at the end of my chemotherapy treatments in January, as the end of my cancer treatment and then my life will go back to normal.  And externally, it will begin to look like it.  My hair will grow back, my boob will be rebuilt, but the truth is, it will not be over, not until I'm 45.  Five years of my life just to try to get to 10 years without recurrence, and no guarantees it will.

So, I think that I will go back to focusing on one thing at a time, and try to forget what I know about the future. My fortune cookie today said: "Today your luck will change".  I will try to believe that it will change for the better.

Self Portrait BBC (before breast cancer)

You might as well be walking on the sun

Isn't it funny how when we have the choice to do something good for ourselves we so often choose not to do it?

Yoga is one of those things that I know is good for me, makes me feel good, yet so often in the past I opted for 10 more minutes of unrestful snoozing over hauling my butt out of bed to get on the mat.  It's not a choice for me now--If I want to be able to move, I must MOVE.

I have to make modifications, again, to accommodate my new limitations. It's not a matter of just getting back to the mat, anymore.  For example, I can no longer just sit on my mat and do seated forward bend.  I can't straighten my legs completely because of the swelling in my knees, yet stretching these muscles is crucial to keep them from cramping and shortening up, making walking even more difficult. So I must get creative with props, now. I have been using my breast cancer quilt as a bolster to elevate my hips in order for me to do this stretch without hurting my knees.

I used to think that I didn't need to use props during yoga--that was for beginners, or people not as flexible as me. Pure egotism on my part. Props are there to help the body do what it cannot. I have found that pride gets in the way of asking for help--even if it is just from a yoga block, strap or blanket. Why do we continually choose to suffer when we know there are tools out there to help us?

Suffering--and the lack thereof--has been on my mind a lot these days, for obvious reasons. How do I stop my suffering? This goes beyond just the immediate pain and discomfort of my RA, my chemo, my recovery; it spreads out to how I respond to the challenges that are my everyday life.

Buddhists consider pain and pleasure to be two sides of the same coin--they both cause suffering. Pleasure causes suffering because it doesn't last, when it is gone we lament, we regret, we try to do what we can to bring it back permanently, which is impossible. Change is the only constant.

To counteract this suffering, Buddhists practice detachment. I used to think detachment meant not caring about anything. The thought of giving up pleasure in order to give up pain just was not going to work for me. I thought I could try to just give up the bad and keep the good. Again, pure egotism.

My favorite book on Buddhist
 meditation, written by a westerner.

As I read more about Buddhism, from the Dalai Lama and Lama Christy McNally, I am starting to understand what true detachment means. It doesn't mean non-emotion, or giving away all your possessions; it means the realization that you cannot hold on to anything in this life, because to be alive is to be changing every single moment. Detachment is the mental state when we give up the illusion that we can somehow do something or say something that will stop the changing.

I'm struggling to internalize this concept. My logical brain understands and agrees: our outlook affects our outcome. But it's such a foreign idea to my American heart to realize that I cannot be or do whatever I want. Isn't that the American Dream? But it is based purely on the physical, material side of things.  If I have this, then I will be happy.  If I take that, then I can eliminate pain. If I have a bigger house, better clothes, a cleaning lady, etc. I will be happier.  In the end, we die alone with nothing but the memory of the life we lived. This is not supposed to be morbid; it is the truth.  You can't take it with you. We cannot cheat death no matter how hard we try--but we must not cheat life, either. None of us knows how long we have to live, and how that life will turn out. We must appreciate that the moments we have are meant to teach us something, and those teachings will impact the quality of our lives and the lives of those around us that we touch.

So, I am struggling with change even as I am dealing with it. I know that this moment of my life will soon be over, but I will have a new challenge to face. I will need to make the necessary adjustments to bring myself back into alignment, physically and spiritually. For now, though, I need to use a bolster during my practice so that I can breathe in, stretch forward...and breathe out.

~Santosha

Isn't that Special?

I saw my rheumatologist yesterday.  I asked him...."So....is it pretty common to see patients have RA symptoms flare during chemotherapy?"  Answer: "Uhh.....no....".  According to both my oncologist and my rheumatologist, RA symptoms typically go into remission during chemotherapy. In fact, there are many cross-over drugs that are common to both cancer and auto-immune disorders.  I tried a couple of them during my initial "guinea pig" stage of treating my RA 10 years ago: Prednisone, Methotrexate, to name a few.  None of them worked very well to treat my RA until I started up on Enbrel injections.

Enbrel is different from the other DMARDs (Disease Modifying Anti Rheumatic Drugs) in that they are in a class called the Biologic Response Modifying Drugs.  Herceptin, which I'll be starting next month, is also considered a BRM.  In my highly technical understanding of them, they basically work by taking the trouble maker cells in your body and neutralizing them so that your body doesn't  have a hissy fit and start attacking them (thus, auto-immune response), or, in the case of my cancer, they counter the HER2 receptor cells that talk nice normal breast cells into becoming irresponsible, whacked out, crazy cancers instead.  And while I'm not a doctor OR scientist, I do find it interesting that I'm dealing with 2 separate diseases that seem to have some things in common. Or at least some treatments in common.

So, I appear to be, in the words of Dana Carvey's Church Lady: "Special".  Auto-immune flare ups while they are actively poisoning my immune system.  Just seems crazy to me.

The down side to this is that Enbrel, the one drug that I've successfully used to keep my RA in almost total remission for 8 years is not recommended during chemotherapy (according to my Oncologist). According to my Rheumatologist, it's not recommend to use in patients with active cancers.  I pointed out to my Rheumy, that technically I don't have an active cancer.  I know that the tumor in my breast was completely removed during my mastectomy. So...which is it?  I know that I seem like the poster child for Big Pharma these days, and I'd really rather be part of those few, those happy few, those band of brothers, that experience remission of their symptons during chemo.  But, unfortunately,  I'm not.  I'm hobbling around with softballs for kneecaps and a swollen ankle that makes me walk like Quasimodo or one of the living dead.  So, I'm trying to talk my Rheumy into investigating if I can use a little bit of Enbrel while I'm doing chemo.  The down side is that Enbrel is associated with a greater risk of developing certain types of cancers (not breast cancer). So it would seem that I'm damned if I do, damned if I don't.  But when your choice is between, can I get out of bed and walk downstairs? vs. not;  I'm sort of leaning toward the functional.

In the meanwhile, I have a few short term options to try and make my pain more manageable. I'm already on a daily dose of prednisone, 10 mg. This is helping but not completely. It basically makes the difference in whether I'm able to walk down the stairs like a 2 year old or like an 80 year old.  My doc also had me up my dose of Celebrex to 2x a day instead of once.  This is a type of  NSAID...that is; a Non Steroidal Anti-Imflammatory Drug, which is easier on the Adrenals than full-on steroids and as a COX-2 inhibitor, gentler on the stomach than taking repeated doses of say Motrin 800 or something like that. Gentler on the stomach is a big win for me during Chemo!

My Rheumy said I can also come in for cortisone injections into my knees, which, as much pain as I'm in, are at the bottom of my list of fun things to do.  The problem with the injections is not the injections but the fact that they stick a needle into the kneecap first and suck out all the inflammatory fluid that has accumulated around the knee.  I had this done 3x when I was first diagnosed with RA, and my knees were about twice as bad as they are now. It's something that I'm really not jumping up and down to do (if I COULD jump), even though I know that it means less pain for a few weeks after. So....I'm going to try really hard not to remind my Rheumy that he came up with that option.

The third thing we are doing is....nothing.  Well, actually, something, which is...wait and see.  See if my next round of Chemo: Taxotere and Herceptin might actually help out some.  I have to say that I'm not overly optimistic, but at the same time, what choice do I have?

In the meanwhile, today, I started on my twice a day dose of Celebrex, and I can tell that it is definitely making a difference.  Going into my 3rd week of chemo recovery, it would be nice if I can avoid any more drama, no infections, melting eyeballs, fever, or ballooning joints.  One more week and then I will have my last treatment of the A/C.  I'm so excited to be almost to the halfway point of my chemo treatments!

And I guess, for now I will just have to be content with knowing that I really AM special.

Velcro Head- just for fun

I got a couple of really nice comments on my blog this week and I realized that I probably should try a post a little more often, and maybe not always be quite so pathetic. I don't want everyone thinking that I'm so deep ALL the time....So, in an effort to lighten things up after a few weeks of deeply darkest dark things..

After about 15 days into my second cycle of the A/C chemo, the dark stubble on my head started falling out.  I keep thinking that at some point that I'm going to actually lose ALL my hair.  But no, only the dark stuff fell out last time, which was a relief, because it was NOT a pretty site, but I still have all these short blonde hairs all over my head.  I also have a patch on the back of my head that is still dark and stubbly - it reminds me of those ancient Asian warriors who shaved their heads except for just the patch in the back and then they had a really long braid.  I'm not sure I could rock that look either, but that's what it reminds me of.  Luckily I can't really see that part unless I pull out a hand mirror to check out the back of my head, and these days, why the heck would I do that!??

I tried to take a picture of my velcro head...but you can't really see the blondies! (oh, but the age spots and wrinkles show up real great!)

Another picture to show the current state of my eyebrows and eyelashes. As you can see I still have some of both, but they are in a pretty pitiful state.  I keep hoping that I will be able to get through this with at least some of them still intact, but I still have the 2nd half of this round to go through (I usually go through a de-hairing around day 15) and one more, plus the taxitere. 


Still, a girl can hope.  At this point, the only one who really cares about this is me and anyone who ventures to my house to visit.  
Usually, if I know I'm getting a visitor, I WILL shower, make some effort with makeup and put on my "dress pajamas".  A girl's gotta have SOME standards!

Velcro head PLUS Clean Bathroom!

Speaking of standards, I cleaned my bathroom today!!  WAHOO!...!  I mean...I really HATE cleaning my bathroom, so I'm not excited about THAT,  but what I hate more is a dirty bathroom.  Up til now we have been paying my 17 yo to clean the bathrooms and vaccuum but she quit last week because she got a real job and she is a senior and her life is more important than me having a clean bathroom....   boo for me.  I'm not sure I can hire a real cleaning lady for what I was paying her.  I looked into "Cleaning for a reason".  This is the charitable organization that will set up free house-cleaning for cancer patients, but alas, there was no one in my area that was hooked up with them, so...no free housecleaning for me. 

I'm feeling much better today, so when I say I cleaned it, I mean I really cleaned it...pulled the cabinet away from the wall.... (GASP!) and wiped down the wall behind the toilet and everything.  Then I got hubs to scrape off the nasty 20 yo caulk off of it and recaulk it fresh.   It's still a butt ugly blue cast iron tub with pepto bismol pink tiles, but at least for today it is clean clean clean...(I mention this cuz you can see a bit of the ugliness in the background of my photos- see how clean the ugly pink tiles are???...that is my go to photo mirror to take head shots of me with my iphone.)

Yes, I am finally feeling BETTER!  Not great, my stupid knees and ankle are still swollen and painful, but at least I'm not so nauseous.  At the advice from my oncologist's nurse, I started taking Compazine on top of Zofran and that helped a lot.  Yesterday, I think I even managed to eat 3 or 4 times...(does 1/4 tub of Kozy Shack chocolate pudding count as a meal? I think it does!)

I haven't had a repeat performance of  hives either, so either the steroids that I'm taking are helping or I broke the cycle.  (my bet is on the steroids).  

Swami PIXIE BADASS....?

I also started taking an additional drug that my Doctor prescribed awhile ago to help my antidepressants work better.. (IMHO it's a whole big pharmaceutical scam, but I think that is a whole OTHER blog to talk about!) 


but anyway....

One of the side effects is that it makes you really sleepy, but I've taken it two nights in a row and slept through both nights!  I had really vivid crazy dreams, but at least I slept all night and didn't have to keep waking up to pop some xanax to get back to sleep.  I'm not wanting to take it on the regular, but if it means I can cut out 3 other drugs that weren't working ok, and I get some sleep in the bargain, I'm on board for now.  

It's totally frustrating to be at the complete mercy of medications, but for now, anyway, everything seems to be working, so I will leave it at that and call myself happy.  

I can't get into see my Rheumatologist until this Thursday- they are squeezing me in around 5pm, so any guesses on how long I'll actually be there?  I have a new hat I'm wanting to try out, and it's amazing how much knitting you can get done in a doctor's office waiting room- trust me!

The new hat is a slouchy style beanie with.....a CABLE brim!  I've never done cable, so this is sure to be VERY exciting.  I keep hoping that I will find the magical hat pattern that will not make me look like a Q Tip on legs.  I've knit 4 hats now, and the only one I wear on the regular in that stupid infant hat that I made wrong!  Here's a picture of what the (airquotes) EASY (air unquotes) Cable Slouch Beanie looks like on a person with hair....I'm sure it will look much worse on me, but I'm willing to give it a go, at the very least, I'll finally be able to say that I have knit cables.