Depressed Immune Systems

The Immune System, our Gladiators, fighting infection.  Post surgery, this is compromised for quite a while apparently…. for as I believed I was getting stronger (heading into cold & flu season), my immune system had a different vision.  The past two days have been difficult, battling flu-like symptoms and strep throat-like symptoms (yes, I will see the doctor later today).  In short, I feel awful.

I had believed that exercise and nourishment would replenish, but I forgot the third part of the equation – time.  Add to that the fact that I am now minus 3 lymph nodes which clear toxic waste and impurities in the blood. (or in the case most types of cancer, spread it throughout the body).  Maybe its a good thing that I am oblivious to all my frailties….but it does continue to surprise me when they occur… the fine line between denial and acceptance.

So besides still trying to fully recover, I now have this to deal with…. Made myself some yummy chicken soup today… not quite like grandma used to make, but still good considering I didn’t have all the ingredients.  With my husband traveling, my wonderful neighbor went to the store to buy the chicken.  Already taking vitamins, I have to believe I pushed myself too hard (now there’s a surprise to no one)… would I do things differently?  Probably not  😉

 

 

 

 

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The Human Experience

Quote from another breast cancer survivor: “My back has been sore lately. I’m trying to shake that irrational fear that it means cancer in my bones……Yesterday I admitted to a friend that I’m scared and she talked about Buddhism. About being in the present. Good advice. However, I did not receive it well. Deep down, for me, it is embarrassing to admit that I have this fear. Advice, no matter how well-meaning, makes me wish I hadn’t mentioned it. It makes me feel alone. Advice is tricky like that. And I can be a prickly bastard. Ah, well, we’re all human. Right?” –  http://babiesornot.blogspot.com/

Sometimes we want to ‘fix’ people…its almost irresistible – heck, I’ve done it too…probably still do.  You watch a friend in fear, and you want to protect them from diving down that dark black hole… so you offer something that works for you – maybe it is yoga, meditation, mantras, prayers, religion… or perhaps some pithy saying like “when a door closes a window opens” (please spare me from that one – it may be true since our world is full of endless possibilities, but it is not what is needed).  Someone who is expressing fears, especially after just going through or still going through a traumatic event, needs someone to listen…not ‘fix’.  Now I’m not a psych major (hell, I’ve probably misspelled the word) or therapist, so maybe I’m all backwards here, but I’ve been down these twisty bumpy roads a few times, and this much I’ve learned.

Friends react from their own historical frame of reference, not yours.  Friends have their own fears – and maybe yours just touched a nerve.  Friends are well-intentioned.

So the good news is that although the ‘gift’ may not be an acceptable answer at the time, it is still a gift.  Because over time, you may get to a place where you can receive the gift and it brings something into your life to help you…or not, but you’ve learned something about you, about the gift, and about your friend.

And what of the human experience? The moments we madly plunge from event to event in our lives and all the stuff in between… The strength, the frailty, the good and the bad..  Health and Disease…all part of the human experience.  It comprises the elements of our lives…not to define our lives, but to add to it.  Yes, I would have preferred to remain ignorant about breast cancer, not having a direct experience, but my life has changed because of it…not because of the cancer, but because of the people around me, caring.

Sometimes it is difficult to be in a position where you cannot do the things you had enjoyed, whether it is hiking, biking, kayaking, golf, whatever it is…. due to a physical condition.  It feels oppressive because we have built our identity around it and keep the pain to ourselves.  But it can also provide an avenue for creativity and expansion – to try new things and places during that interim….and that’s difficult for the human experience – we are, after all, creatures of habit (and control… why else would being unable to get our way disturb us?) Therefore, a new opportunity gives rise – of relinquishing control and expanding horizons…. and when you think about it, perhaps that is not that different from Buddism, Yoga, Meditation, Religion and other paths that open the heart……

The Tamoxifen Tango

Tamoxifen, the double-edged sword… one edge reducing the risk of recurrence of the breast cancer by up to 50% (5 year intake)… the other edge, a more clandestine edge… delivering a host of side-effects which greatly vary depending upon the person.

So far, I’ve ‘enjoyed’ reliving my hot flashes again, being terrified that I developed a blood clot in my lower leg (all was ok), and for the past 2 weeks, low back pain which had me bent over like an old lady when moving from seated to standing position.  This one has prevented me from getting in the kayak, which bums me out.

That said, I’m making good use of my time in re-building flexibility, strength and endurance… amazing how 3 months and surgery robs you of so much….

So the big concern while on Tamoxifen is for blood clots and uterine cancer.  No joke… prevent breast cancer but 2 out of 1,000 women will develop uterine cancer.  So here’s my plan.  I intend to get a ‘baseline’ of uterine size and ultrasound to determine lining thickness on Tuesday at the ob-gyn (or at least start that ball rolling).  Then maybe semi-annual checks if she agrees.  I have a family history of uterine fibroid tumors..both my mom, my identical twin sister and I have or have had them.  My mom (now deceased) had a hysterectomy.  My sister had a myomectomy.  I still have mine which started shrinking post-menopause…but now that I’m tamoxifen..who knows.

I have found this very good report on uterine cancer tamoxifen studies and recommendations which I share with you.  You are your own best advocate…whether in the hospital or out of the hospital.  You know your body…. make sure you have the physicians who can help you monitor your health.  It recommends endovaginal sonography with color Doppler imaging, and all women with breast cancer, whether or not they are receiving tamoxifen, should be encouraged to undergo annual gynecologic evaluation, which should include endometrial sampling in the presence of abnormal vaginal bleeding.

On a positive note, I probably have recovered about 98% of my flexibility bi-laterally which is awesome.  I’ve been developing my own set of exercises to break scar tissue.  They are aggressive, and while I do them very carefully to avoid injuring another body part like shoulders, they do work well, and its a good feeling to recover!

A good friend of mine who is also going through breast cancer talked about renewal.  Another friend calls it her ‘new normal’.  Whatever you call healing, it is a composition of forgiveness, patience, dedication, positive energy and hope for the future.

Thanksgiving

In case y’all haven’t picked up on the photo, it is a cooked turkey breast.  Yes, I  have a warped sense of humor.  I couldn’t think of a more appropriate photo than to combine the essence of this blog with Thanksgiving in the form of a cooked breast (actually, two).  True, it would have been even more accurate had I been subjected to radiation, but I think it still works!

Thanksgiving – a time to reflect and give thanks to all the love and support that carried me through this harsh journey… to my husband who was endlessly by my side, despite his own lack of sleep… to my dear friends and family, who stayed in contact with me to offer wisdom, love, and to simply show they care…. and to my neighbors, who brought food when we were too tired to cook, and one even made a beautiful pink handmade scarf.

So, now I am past the surgical biopsy, the sentinel node biopsy, the mastectomy, and living day to day on Tamoxifen, the double-edged sword.  I’m coming up on 3 weeks on Tam, and my current side effect is lower back pain – to the point where 15 minutes in a car is difficult.  Other from that,  I am healing well, regaining my strength and my flexibility….lets say whatever I have control over is improving!  I have little control over Tam, but I’m thinking accupuncture may help alleviate the pain….

So, to all my dear dear friends, family and husband, I love you all and give thanks every day, but especially this day, to you.

 

Healing & Scars

No, this is not me…. but I thought a good image of the mastectomy scar when the nipple is removed.  In my case, I was “fortunate” to have a skin sparing and nipple sparing mastectomy… but there is a scar that runs from the side to the nipple.  And thats only the visible scars… we amazon warriors bear others through this process that are well hidden (in most cases!)

The other breast cancer scars healing are the 2 on my right by the top rib cage and 3 on the left by the top rib cage from the drains (oh, and of course the surgical biopsy scar itself, as well as the sentinel node biopsy under my left arm….  so combine this with my colles fx scar on the left wrist (and stainless hardware) and the craniotomy (and titanium hardware), some bunion surgery scars, a chain ring scar on my right inner thigh, and an endometriosis scar bikini line, and I ‘m pretty much covered head to toe…but I wear them well!

On all these, healing must take place and be given the space and time to do so.  On a physical level, I chatted with a plastic surgeon and other breast cancer survivors about what to use on scars…. they range from vitamin e, cocoa butter, to mederma (and products like them).  Basically, just allowing the scar to have moisture enhances the healing.

And this is the area that IF a recurrence should present itself, it will be.  But it is now time to live and let the rest go.  To that end, humor helps.  So I decided to treat myself to this little t-shirt that says it all!

So here’s to Life!  Wear it with a smile!

 

I’m Not Superman

Ok, today my body told me I am not Superman.  Yesterday was amazing, and so wonderful to paddle 9 miles with dolphins and friends…but last night and this morning, my body ached and hurt, reminding me that surgery was only 6 weeks ago.

So, we’re cutting loose and not paddling today.. oddly enough I am focused only on having enjoyed the evening with wonderful friends and yesterday’s paddle….

Tamoxifen seems to exacerbate any frail areas…for me, it is my injured elbow and my lower back.  Time will change that, I know…

My body is still healing.  And the beautiful day that was yesterday is still vivid within me.  Thank you dear friends for filling my day with joy.

Oh, and for those of you who are counting with me…. only 1,815 more pills to go!

Facets

Reflections, lessons, journey, illuminations… all like facets of a prism, offering a new perspective or insight into something we’ve assumed or accepted as truth for a very long time.

It can occur serendipitously , or through meditation, but either way, it challenges us to understand our true self… our selfless non-ego self – to tap into our strength and courage to see things differently.

For me, this came about today on the water in a kayak in Charleston, surrounded by wonderful friends, and chatting with one amazing woman as we paddled, the sun shining and glistening off the water… the elements of  compassion and support providing a foundation for exploration.

And yes, I tested my physical abilities only 6 weeks post bi-lateral mastectomy too…. and I rolled flawlessly… and I did a balance brace on the water….and it felt like home.  And as my friend noted, I had already determined in my mind that I would be able to roll, and she was correct.

But that is not what caught me so much by surprise today, although I was extremely pleased… what came to me was the whole of life – the stepping stones, that bring us to the next.  Sometimes, we believe it is the means to an end… but if we allow, we might learn who we are – our true ‘self’, along the way.

Your ‘self cannot be defined through the work you do – rather the work you do is a reflection or facet of your ‘self’… you resonate with your life expressions because of who you are – It is an extension of who you are –  it does not create your ‘self’.

Now I’m sure to most of you reading this, you’re thinking… yawn… and I don’t blame you.  Here I am following breast cancer talking about ‘self’.

Perhaps I’m tired of researching and talking about breast cancer… and because that has been transformed for the day.

We relive our experiences when we relate them… how much more potent it is for me to recount the epiphany rather than describe how my leg pains due to the Tamoxifen side effects are subsiding (altho replace by back pain today)… I’m finding that the side effects are transient..sometimes days, sometimes one day.. and then forgotten.  But today, looking through the prism and turning the facets to view differently – seeing joy from within …that is truly a reward I want to share with you.

Momentarily Side-tracked

by Tamoxifen Side-effects.

We planned to leave today for kayaking in Charleston – but the past 3 days I’ve experienced sharp shooting pain in my lower leg and decided it best to ensure a blood clot was not planning a surprise announcement.

It has been 6 days on Tamoxifen, and I’ve sampled 2 of the side-effects already…. hot flashes (altho mild compared to going through menopause) and muscle pain.  Hopefully that will be it.

But all is well – the doc felt it was in fact just a side-effect and so we leave tomorrow for some paddling fun and sun. I joke that I have two new floatation devices, but I will wear my PFD.

I found out that there is a test that can be run to determine if you actually derive full benefit from Tamoxifen.  It is called: Cytochrome P450 2D6 Genotyping.

CYP2D6 (cytochrome P450 2D6) acts on one-fourth of all prescription drugs, including the selective serotonin reuptake inhibitors (SSRI), tricylic antidepressants (TCA), betablockers, opiates, neuroleptics, antiarrhythmics and a variety of toxic plant substances.

Some 7-14% of the population has a slow acting form of this enzyme and 7% a super-fast acting form. Thirty-five percent are carriers of a non-functional CYP2D6 allele, especially elevating the risk of adverse drug reactions when these individuals are taking multiple drugs.

Drugs that CYP2D6 metabolizes include Prozac, Zoloft, Paxil, Effexor, Hydrocodone, Amitriptyline, Claritin, Cyclobenzaprine, Haldol, Metoprolol, Rythmol, Tagamet, Tamoxifen, and the over-the-counter diphenylhydramine drugs, Allegra, Dytuss, and Tusstat. CYP2D6 is responsible for activating the prodrugs codeine and other opioids into their active forms. The analgesic activity of the drugs is therefore reduced or absent in CYP2D6 poor metabolizers. (Note: Evista does not need CYP2D6 to work).

A recent review indicated that Asians, Pacific Inlanders, African and African Americans have higher percentages of reduced functional or non-functional CYP2D6 alleles (between 40% and 50%) than do Europeans (26%). Good info to know if you fall in those groups.

Getting back on track…… so, I’m going to put my kayak in the water (with the help of my husband and friends), and see if I’ve regained sufficient flexibility to roll.

That reminds me of one of my favorite children’s book – The Little Train that Could.  And as I set up for that first roll, I’ll be thinking “I think I can, I think I can, I think I can”.  ..  and be thankful that I can at least be where I am, surrounded by wonderful family and friends, near and far….

 

 

Dancing in the Rain

Anyone who has emailed me has seen the line at the bottom of my note which reads ‘It’s not about waiting for the storm to pass, its learning how to dance in the rain’.

Coincidentally, I found another breast cancer sur-thrivor who is an artist and created a painting (shown on the image to the left) with that same saying which expresses it beautifully.  Kudos to Amy Kalisher of Connecticut.  One of the most beautiful, strong, courageous and active women I have encountered on this journey.

So life is getting better, but still scary.  I’ve been communicating with a surgical oncologist at MD Anderson who feels they should have taken more skin to get to the close margin…and that frightens me a bit…but that is in contrast to my surgeon who felt they didn’t have a clear enough picture of where to take more skin – hence, the option of rads or Tamoxifen.  Based on studies, my risk of recurrence is increased from 1-2% up to 5-10% because of the unclean margin.  Tamoxifen should lower that risk about 50%… so down to 2.5-5%.

It is still unnerving and I’m learning how to dance in the rain of uncertainty.  But I know one thing for certain – I am regaining my range of motion with exercise and reclaiming my life.  We went mountain bike riding for two glorious days and will be heading to Charleston for kayaking for another 2-3 days.  There’s nothing like getting back on the saddle.  Yes, the first time you realize how much strength surgery has sapped from you – and you smile and say, but I’m here….

1,823 to go

Tamoxifen pills…2 down, 1,823 to go.  So far so good, but it hasn’t been long enough to tell really.  So here is when I ask forgiveness ahead of time to all my friends if I have mood swings and act irrationally….for me….  ;-X

I hope for none, and watch out for the dangerous ones…. Tamoxifen is reported to cut the risk of recurrence to 50%, sometimes more (I think this depends upon the type of cancer).  So if my odds now are 10-15%, that number is brought within reasonable life events.  The good thing about Tamoxifen (actually 2)… it continues to work after stopping and it helps the bones, unlike the Aramatase Inhibitors.

The AIs have less serious side effects but it is a guarantee for osteoporosis and women who take it typically take injections and supplements for bone density.

Tamoxifen side-effects can be some of the following:

  • hot flashes (oh joy, I get to experience menopause all over again)
  • vaginal discharge or bleeding
  • mood swings
  • depression
  • weight gain
  • blood clots
  • endometrial cancer (2 out 1,000)
  • cataracts
  • uterine cancer (2 out of 1,000)

On December 13th, I meet with the Medical Oncologist who prescribed this – I want to explore the bone density drug Evista with him – studies show it slightly less effective at lowering the incidence of breast cancer in women who are at high risk 38% vs 50%, with less serious side effect of possible endometrial and uterine cancer.

Here’s some interesting links that support this:

Addendum: Just learned that Evista is offered for women pre-cancer – those at risk… once you have had breast cancer, Tamoxifen is the standard drug of treatment.  So, if you are at risk for breast cancer (history or BRCA positive) and have osteopina or osteoporosis, this drug is the drug of choice to help both point.

For those who have already been diagnosed with breast cancer, here is an excellent study to help you with decisions:

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