So much for walking out the door...

They say you are a cancer survivor the moment you get diagnosed, but every patient I know thinks that once you finish treatment you are a survivor. The definition of "cancer survivor" is allusive. No only is there no finish line, the whole "survivor" mentality is just an enigma. What exactly did I survive? What am I surviving on a daily basis? I have heard it said the the only way to know for sure that you are a cancer survivor is to die of something else.

In my year post-treatment I have learned that it is a complete fallacy to consider myself "post-treatment". Insinuating that a woman on hormone therapy following a diagnosis of breast cancer is not "in treatment" is completely dismissive of the ordeal she is enduring by being on these drugs. In my case Tamoxifen is my hormone therapy of choice. Lesser of two evils is more like it. I "choose" to take Tamoxifen because I am pre-menopausal, a requirement of being on Tamoxifen, and I did not like the idea of being rendered post-menopausal either chemically or surgically in order to be able to take the newer Aromatase Inhibitor class of drugs. It seems to be the preference of the oncology profession to immediately make all pre-menopausal women post-menopausal and put them on AIs right after finishing "treatment" i.e. surgery, chemotherapy, radiation. These drugs are relatively new, gained a wide base of support as being more effective than the older Tamoxifen, and thus became the standard of care. Never mind that there are no long term studies as to their side effects OR that there is no data at all on their use on pre-menopausal women. This being the case, I'll keep my ovaries, thank you very much.

6 months into my therapy with Tamoxifen, feeling lucky that I had thus far dodged every side effect bullet I had read about, I started to bleed. There has always been the possibility that my hormone levels would produce a normal menstrual cycle following chemo, but it is necessary to take a uterine biopsy to rule out the possibility of cancer of the uterus, another side effect of the drug. My biopsy results came back negative. Now the question was, what to do to stop the bleeding. I was becoming anemic, the bleeding was at hemoragic proportions, messy and painful. Progesterone was started, Tamoxifen was halted...now I was without protection from estrogen and adding the other cancer fuel of progesterone to the mix. I was a walking time bomb. The bleeding stopped, but at what cost? Now the question arose, what to do for long term hormone therapy? I have a 69% chance of cancer recurrence without hormone therapy, so not taking the drugs is not an option. The only plan I was presented with was to obliterate my ovaries and go on the AIs. This would set me up nicely for early osteoporosis, cognitive degeneration and cardiac vulnerabilities that I am not so keen on. Where does the quality of my life come into the discussion? Perhaps I will be cancer free for longer, but will I be walking, hiking and kayaking during that time? Will I be sharp of mind and cardiovascularly strong to accomplish all that I expect to do with the life that I have? Will the sexual side-effects of the newer drugs take away even more pleasure of being alive? These are not questions easily discussed in an oncologist's office. In fact, the only physician I have found adept in this area is a woman who is at once a psychiatrist, gynecologist and oncologist. Her knowledge of hormones, hormone therapy, brain chemistry, sexuality, congnitive function, cardiac, bone and mental health is awe inspiring. Thanks to her I kept my ovaries when the option was presented last year. This year I met up with her at the same survivorship conference in San Francisco and presented her with my current situation. Right away she said "well, then remove your uterus." Problem solved. This had occurred to me several weeks prior but I dismissed it because I figured that at least one of the doctors I have seen would mention this if it was an option, right? Wrong. After seeing Dr. Amazing, I paged my gynecologist and mentioned this to her. "Of course!" she exclaimed.

The surgery is scheduled for Thursday, December 11th. I am still keeping my ovaries. I have resumed the Tamoxifen. The bleeding has returned, affirming the need for surgery.

It occurred to me the other day...without breasts, sans a uterus and blocked estrogen, what makes me any different that a transgender man except for the lack of penis reconstruction? Of course I am being facetious...but it is a challenging thought.

Finally a visual

I am reading an amazing, disturbing, fascinating book that I just can't put down. It is called The Secret History of the War on Cancer. It lead me to the web...which ended up with me googling TRAM flap reconstruction video. I have been dying to see what was done to me, but no video existed. Not anymore! Just a few weeks ago this was posted on YouTube. It is not the exact surgery I had...but damned close! I must admit, I watched this with my hands over my mouth, sometimes forgetting to breath. It is graphic, so be warned. There is also a mastectomy video on YouTube, which was actually more graphic and slightly more disturbing. In any event, here it is. I find this tremendously helpful in assimilating all that has been done to me. For those of you going through the same, I hope it provides some measure of satisfaction, whatever your motivation.



http://www.youtube.com/watch?v=xcew3ycbG50

More next time...

It's been SOOOO long!!!

Well, what can I say. I couldn't even try to catch up on all that the last 5 months has been about. Let's just sum it up by saying that I have been out living life, trying on new hats, taking some advanced courses at cancer college and dabbling in professional life.

Then I got hit with an emotional brick...two pulmonary nodules, one on my right lung, one on my left. The plan is to watch and wait. In six months I will have another CT of my chest and see if they have changed. They could be something, could be nothing...worst case senario, they are small and treatable and will most likely be manageable.

I am back from spring break with my yoga routine (thanks Kate!!), my new sacred space, ie yoga room, gym, meditation space, office(yes, all in one!)and my first juicing experience. I have let that machine languish in the pantry for 5 months! I haven't even touched it! Well, as part of my new boost to my well-being I decided to add the juice to my morning routine. This morning I got the thing out, dusted it off, pulled a carrot, celery stalk, some spinach, an apple and cucumber from my fridge. A little peeling and washing and I was ready to roll. I started with the cucumber, flipped the switch on and plunged in. Soon, cucumber juice was spilling out onto my kitchen counter. OOOPPPPSS!!! I forgot to put in a receptical for the juice! I flipped the switch off and waited to stop cracking up! Then I cleaned up and started again. This stuff is fantastic. It was so easy and easy to clean up. Six minutes from pulling out the veggies to wiping down the machine. Not bad at all.

Big Sigh...

The boom has been lowered. Just when I think I am done with treatment and that I will walk through that door, cross the threshold, and re-enter my life, remnants from cancer world keep pulling me back. Today I met with the lymph edema therapist for the swelling and pain in my right arm and hand. I do not have lymph edema, but a condition left over from my blood clot that for some reason is leaving my arm “congested”. After all of her measurements of both my arms was completed it was obvious that the left arm and hand are smaller than the right. Therapy for this consists of massage, which she said feels quite good, BUT…it will necessitate me being wrapped up in compression bandages until the next appointment. I will be wrapped in rather bulky bandages from my arm pit to my fingers. Only the tips will be visible. I will go to her three days a week for three weeks. I will have to wear this bandage 24 hours a day. It will only be removed for therapy. After that I will need to wear a compression sleeve, the length of time is to be determined. BOOM!

I stopped in to the oncology office on the way out of the building, just to say hi. I saw chief nurse extraordinaire and she asked how I was doing on the Tamoxifen. I told her I haven’t started it yet and that the other nurse told me to get one more INR/PT result before starting. She looked at the results in my chart and told me that it is ok to go ahead and take it now. She must have seen my face change, because she said “it should be fine. Most people just report an increase in the hot flashes.” Oh, yea. I didn’t even ask about the other stuff. I don’t know why I am so hesitant about this next phase. I mean, thank God there is hormone therapy…otherwise this would be the end of the road. Now there are these drugs to give some added protection. Good thing…right? Add another pill to my collection. BOOM!

I am getting more exercise. Everyday I have been able to do something moderately strenuous and not feel wiped out. I can tell I am building up, getting stronger. I still have to eat especially well. If I miss a snack I feel it. I am eating many, many more greens and vegetarian protein sources. I test my morning pH levels and they are finally getting to the alkaline side. I am chugging down a green drink twice a day. It is a powder form of multiple dried grasses. I mix it with some juice and water then shake and go. It is pretty palatable that way. It took me two weeks to start using it. I can honestly say that I have sustained energy throughout the day. I take a multivitamin once a day, fish oil twice a day. I add concentrated green tea to a shot of water each morning and add other drops to my water to balance the pH. Phew! This is all in addition to my regularly scheduled meds, which are becoming a habit by now.

I worry about the girls and how they will interpret this new development with my arm. I have to explain why I will have such a bandage on my arm. Although I know this is temporary and just a matter of fine tuning, they are super sensitive to changes in my appearance and can interpret something like this as a set back and something to be scared about. I have until Thursday to explain to them what is happening. It is that much more difficult to adjust to any change when I have two little girls to help through it too.

Being a parent and having cancer is a tricky position to be in. I could never have been prepared enough to have spared my children the anguish they have experienced. Now it seems that my issues are leaking out and finding other little people to disturb. Case in point: Mia was playing at the park with her new friend from her Kindergarten class. Her mom told me that she awoke in the middle of the night and had trouble getting back to sleep. Her mother explained that she was talking about how Mia told her daughter that her mommy’s “boobies” had been cut off. This scared her friend and horrified her mom, who I could tell was trying to tell me about this incident with as much tact as possible. I apologized for any trauma this may have caused her daughter. I told her I didn’t relay such information to Mia but that she may have been referring to my nipples, which are definitely missing. My daughters see me naked all the time, so I didn’t want to start hiding this from them, however, I came home from the hospital with reconstruction from the TRAM flap, so it immediately looked like I still had breasts. I guess they pick up everything anyway. It’s not enough I have to deal with this within my own family and circle of friends, but now almost complete strangers are involved. Do I have to warn everyone who wants to play with my kid that they might come into contact with the realities of cancer, much like a kid who has been exposed to chicken pox would report this to the principal’s office so a note of warning could be sent out to all the other parents? BOOM!

My issues are much more psychological than physical at this point. Things affect me more deeply now. I think this news of the upcoming three weeks of arm bandaging threw me for a loop, as did the now visible starting line of Tamoxifen treatment. I missed lunch and was shopping at Trader Joe’s, also looking for a quick something to eat. Nothing appealed to me; I had no appetite. I can not afford to miss a meal yet I could think of nothing to eat, AND I WAS STANDING IN THE MIDDLE OF TRADER JOES! That is some kid of craziness! Just this fact alone made me feel frustrated and vulnerable. It is amazing what can set me off now. Imagine lunch becoming such a big deal. When I picked up Mia from day care they had snack laid out on the table. In a basket was a bunch of bars made up of whole nuts and seeds. I grabbed one and put it in my pocket. That little bar saved me. Sometimes I need to be led to water… this is my reality for now.

I continue to go to the group at Wellness Community and I look forward to it each week. Although we are quite a mixed bunch, I feel like I fit right in. The compassion and understanding I experience there is so valuable to me right now. It is also difficult, as I am reminded of the devastation of this disease. Just last week one of the participants came to our gathering to say good-bye. She had a relapse and decided that she had had enough. She didn’t want to go through anymore treatment, it was just too hard, she said. She called hospice and was accepting of her situation. “Don’t feel sorry for me. I am happy with my decision” she told us.

I continue to delight in the reflection of the sun on the tiny little flying bugs I see at the park. The leaves are changing colors and the air continues to cool off. Time goes a little slower right now. I want this to continue, to always notice, to use up every last drop of each moment. I saw a sign today that read “The best things in life aren’t things”. As my grandma Esther always said “And how!”

Cruise Control

Well, I am sort of on cruise control. Taking my meds (4 different ones a day!), going to living with cancer group, starting to workout, adjusting to "new normal". I am reentering life, what was my life, mixing it up with what is my life now. I've got my eyebrows, lashes and fingernails back. My energy is coming back. Maizy is happier now that I get her out regularly in the foothills. I will write more later...much to say. Tamoxifen coming on board perhaps next week. See the pix! Cheers.

On a Roller Coaster....

Well, I did it. I spilled the beans...I have issues still left to resolve. Today I am going to get an ultra-sound on my right arm to see if there is any residual left from the clot with the port. My port has been out for a month now and yet I still get swelling in my hand and arm. Some mornings I wake up and my hand is so inflamed that it hurts to bend my fingers. Poor venous return it seems. Often when I wake up it is "asleep". I have that tingling feeling from my fingers up to my elbow. If there is no clot then I will be referred to Lymphedema therapy, although it is not lymphedema. Apparently the treatment is the same. If it is a clot, we will need more information. But the least it means is that I will be back on the Coumadin. It seems pretty obvious that I need to make peace with Coumadin and its' requirements of me. It looks like we are bound to be partners in my health for years to come.

All of this makes me want to pick a triathlon and start training, shrugging off this twilight zone of a life I live in. My challenge is to be present through all of this. No amount of physical training or focus on nutrients or proper diet will heal my psyche. This I can only do by bringing stillness, patients and mindfulness into my being. All that "healthy denial" is slipping away. I am left on the decent of a massive drop on this amusment park ride. That is until the next jerk of the car, around another corner on the edge of the tracks, and up the next ascent I climb.

Feet Firmly Planted in Mid-air

That's me...the damn broke tonight. It started with the Living with Cancer group and continued as I drove home. Luckily I had the good sense to pull over. Sobs were coming from up from my abdomen. I am alternately angry, depressed, frustrated, sad. I cannot feel most of my abdomen. I don't yet know how to work my abdominal muscles. I am not happy with having chopped up my midsection to create new "breast mounds". I wish I knew then what I know now. Would I have chosen differently? Who knows. I just feel like I was so ill prepared. But honestly, how do you get prepared for something like this? I didn't like the pictures of the women with flat chests and the sliced half of a grapefruit looking breasts that the implants looked like to me. I thought all the things they said about the TRAM Flap sounded so good. "It feels like your normal breast tissue". "It looks natural". Etc. The part about the halved section of rolled up abdominus rectus muscles fitting into the now empty skin sacks that were my breasts, then nicely shaped by the flap of abdominal fat cut from my just below my belly button, didn't really sink in. My only thought at the time "they are going to eventually kill me! Off with the things!" They aren't things. I get it now. Every time I take off my shirt and see the almost perfect circles in the middle of my new "breasts" I am reminded how different they are. I have decided not to have the tattoos or any more plastic surgery to make me look completely "normal". I don't think that is possible anyway, so why go through with all the procedures? Even intimacy reminds me that it will always be different. At that point when my nipples would have played a staring roll in the business at hand, Adam and I both realized they were no longer there. In the millisecond that this was acknowledged it was as if the earth stopped spinning and the universe cracked open; it was so loud yet no sound was heard. We talked about it, moved on. He said all the right things, but....

How am I supposed to make a decision about something that will affect me twenty, thirty, forty years down the road? There are no studies showing how different therapies yielded different results. The quality of my life is very important to me. Of course the first consideration is, to the best of my ability, prevent the cancer from coming back. But how does the effort to do so diminish my life? Hormones, bone loss, mental function...these are all words bandied about in relation to my quality of life and the effects of different treatments. It is time for me to decide on which Tamoxifen, Coumadin, Arimidex, Lupron, or surgery tango I want to learn.

I am finding it still a challenge to be dealing with all of this and still function as a mother. I really want to care about the upcoming book fair at school and the cake we will make for the Fall Festival. I try really hard when I am in that arena to play the part, but I am still torn between my expectations of myself and the realities of my current state of mind. I am forgetful. I have to write everything down. I keep calendars of the girls activities and my appointments and dates. I can not just tell someone when I am available. I have to always go home and check it against the two different schedules. I don't feel sharp, I especially don't feel smart. I am still hesitant to make plans since I still can't count on any kind of consistency from myself. Will people eventually get tired of me being this way? I keep laughing it off, apologizing, making statements of the temporary brain glitch I am having. Is it really temporary? Will this ever go away? Will I get my brain back? There was a joke at the group today. The facilitator asked "did anybody go to the class this weekend, entitled 'Do I have chemo brain or am I just forgetful?'?" Some replied "Oh, was that this weekend?" Or "I forgot!" Pretty funny, and frightening.