Okay…I’m going to post just to whine again…so if you can’t stand it, stop reading now.

I’ve just spent the past six weeks either in doctors’ offices, hospitals, undergoing ‘procedures’, or contemplating (worrying) about one of those.  All for the almighty Medical to tell me that the mass they saw on the sono was just scar tissue from my c-sections and the bleeding/pain/general crap I’m experiencing is due to the medication I’m on that’s supposedly keeping my cancer from reasserting itself.  Arg.  What idiot came up with a cancer medication (for breast cancer) that can cause cancer (uterine and ovarian) as a side effect and thought that was a good idea?

I’m betting that the number of cancer patients that become alcoholics or rampant drug users is sky high, at least for those of us that are looking at this as a living for the next 20 years or so (if we’re lucky).  And what is the lovely, all-knowing, Medical going to tell me to do about it?  I’ve got 5 more months on this medication and they’re going to tell me that since it isn’t causing more cancer, I should just deal.

I’m going to have another cider.

Fuck.

k

A year ago today I was diagnosed with breast cancer. Does one celebrate? I don’t really know. I survived the year: Five surgeries (I had sugery on my vocal cords last week), 6 rounds of chemo, odd and irritating illnesses brought on by said chemo, adaption to Tamoxifen and the first onslaught of menopause. I’ve done pretty damned well. I have new hair, new clothes (necessarily), and a whole lot more earings (from the ‘less hair, more jewlery’ phase). I’d go so far as to say I feel okay. That doesn’t mean that hot flashes don’t suck, that my joints are acting like I’m eighty or that I don’t still have days that are a downright misery, but I can honestly say that I’m back in the land of the living instead of living in the land of limbo. All other things will even out and become ‘normal’ over the course of the next year or so.

What happens now…My mother-in-law had a lovely friend who had breast cancer. Her sage advice was something like, “Take the pills and get on with it.” So that’s basically what I’m doing. I walk as many days as I can manage (studies show that walking 30 minutes a day reduces your risk of recurrance by 54%), I take a lot of supplements, I have a j0b in the fall (montessori assistant), and I’m knitting like a fiend. Knitting is good. It’s the closest I can get to meditation. I think it might actually be better, in my case. I’m somewhat occupied, but my mind occasionally wanders. The blog after this will be a knit blog. I’ve got a lot of completed and half-completed projects.

So…this is it. This is the last post. I appreciate the heck out of those of you who have read every one and commented (privately…mostly) and been morally and otherwise supportive. It’s been a long, long year and goodness knows I needed the help. Thanks! So now I begin the long road onward…I’ll see you out there.

:)k

Okay…so the race was a little while ago. I’ve been busy. (whoopee).

As it turns out, I walked almost a 10k. The day of the race dawned balmy and bright. I was up early and out the door to make sure Katherine and I were on time for the pre-event festivities, namely photos by various and sundry. After lining up and kneeling on the pavement numerous times, I stretched my reluctant knees and considered my position. My training had not gone as smoothly as I might have hoped. Shingles, insomnia, anemia (not to mention two small people who call me ‘Mom”) had all kept me off my feet more than I would have liked leading up to an official race. However, here I am standing next to a woman who is still in chemo (Wendy) and one who has started 5 weeks of rads (Katherine), both of whom are walking the 10k. Feeling like a wuss, I agree, reluctantly, to go for the 10…reasoning that we’ll be walking slow-ish, it’s a cool morning, etc.

This was good for quite a while. The early mile or so was quite paced as we were in a pack of hundreds. After breaking free of the multitudes, we set off at a clip, down Congress, across the river, turn on Oltorf….here’s where it starts to lose continuity for me. I was tired and realized we were half-way there (yes, the irony of reaching the 5k mark and realizing right where I was). But I pushed on as Kathryn was happily chatting next to me and Wendy was in the lead. “No problem…I’m drinking plenty of water and it really isn’t that hot yet.” As we passed the 5 mile mark, I realized we had been walking for just over an hour (good pace) and were coming up on another fairly big hill. All of a sudden, confidence waned. I looked at Katherine and said, ‘That hill looks a bit intimidating.’ We slowed and let Wendy and her friend Marc pull ahead.

I hit the hill…and the hill hit back. I was, in fact, the only person in our 120+ person group to require medical assistance. I just stopped breathing properly. Silly me. My blood pressure went through the roof, my oxygen uptake went waaaaay down. Anemia ho..in a big way. After a rest and some oxygen, I felt better. The paramedics were very sweet, but asked surprisingly hysterical questions like:

“Do you have any health problems, mam?”…my answer, “You mean other than the cancer?”

“Are you taking any medications”….my answer “You’re kidding, right?”

In the end, they offered to 1) take me to the hospital (no thanks), 2) drive me in their cute little cart to the finish line (really, no thanks) or 3) follow me like a guardian angel while I walked it out. I chose 3, but Katherine and I peeled off before reaching the finish line to go to the car. She had a son and a ball game and we were a wee bit late.

It was a good experience. I walked about 5.2 miles and I now, definately, know my limits. If you don’t push your limits you’ll never really find the edge and next time…who knows…I might be able to go farther.

:)k

The port is gone…long live the port. I must say I was reluctant to have surgery, but not at all sad to see it go. Having a port-a-cath was a great stress/vein/pain saver on the long chemo road, but I’m happy to have the bump off my chest. In an extremely anti-climactic surgical procedure, the port came out in under 20 minutes. After such a grueling ordeal, the fanfare was minimal.

Now I get to get on with it (as so many people seem eager to see me do). My hair is coming back, albeit too damned slowly for me. My eyelashes and eyebrows made a mass departure after the last round of chemo and are now all coming back in at once. For the first, and presumably only, time in my life, I have thick eyelashes. I suspect by the time they’re full length, some of them will have gone and I’ll be back to my normal set.

In the same way, all of my body hair is re-emerging. This is a bit reminiscent of prepubescence, which makes me feel wierd. No period, downy leg hair and back to a size B chest. Hmmm…odd. The adjustment to my post-cancer body has officially begun. I’m certain that every woman who has gone before me has had the same challenges to face. But in America we don’t talk about many things. Taboos and prudish attitudes prevail in keeping most women from discussing with their families, doctors, and even each other the difficulties we face after emerging from surgery, chemo and (for some) radiation. I’ve had whispered conversations with newly found ‘bosom’ buddies about hot flashes, sleepless nights and -gasp- sex. And we really whisper. Noone wants to say out loud what plagues us most during midnight insomnia. We all lie awake, imagining we are the only one, mostly because the books aren’t talking, the websites aren’t talking, even our practitioners aren’t talking. You women who are reading know what I’m talking about. Some of the men may too. I’m a 36 year-old woman, going through rapid menopause. Mmm, mmm, fun.

In happy news, the genetic testing came back negative. Yay! This means that 1) I can stop worrying excessively about my daughter’s future health, 2) I don’t need to go have my ovaries removed (against probable ovarian cancer if the results had been positive) and 3) I got pissed off again. Alright, alright – I know this was good news. I was happy and relieved. I was. Really. But then I got back to, “Okay, so why the hell do I have cancer?”. And I drank half a bottle of wine by myself for the first time in a year and called some friends and griped a lot, woke up with a horrid hangover and got on with life. Fit pitched. Next topic.

I’ve been training with a group called Move Through Cancer. This organization is geared toward helping cancer patients (and their families) get back in shape and stay there after/during treatment. Right now we’re training for the Texas Roundup 5/10k in late April. We get together every week to walk or run and talk about how to improve our health and decrease bone density loss (a real problem for women in early, forced menopause). And it’s nice to be around a group of people who understand that you have to really work to walk a mile on some days and a small flight of stairs can leave you huffing. I’m still debating about whether I’m doing the 5 or 10k at this point. I suspect a decision will present itself the day I officially register. 6 miles still seems like a long way, but I’m getting there.

:)k

As promised…

About two weeks ago, I finally got mad. I mean really mad. For the past 7 months, I haven’t had time to be mad. I’ve been too busy surviving surgery and chemo, etc, etc. But then I started to get past all of that and it hit me…over-whelming anger. All of this sucks. You don’t get time to contemplate the unfairness of your situation until long past your initial diagnosis. And I remember telling Sam sometime very early on, “At some point I’m going to get very angry about this and I think you’d better be prepared for it.” So, here it is…

The problem here is many-fold: who do I get mad at? what do I do about it? what am I really mad about in the first place?

I think the last is the easiest to answer, but I’m going to answer it with a question: Why the hell did I get cancer in the first place? I don’t smoke. I don’t drink (once a month isn’t considered drinking). I’m in good shape. I exercise. I eat extremely well, including being a vegetarian and a compulsive organic shopper. I had two children fairly early in life, both of whom I nursed for over 18 months a piece. And I have absolutely no family history of cancer, anywhere, for generations. Statistically speaking, I’m very low risk for getting cancer at all…So Why?

Well, a number of possibilities spring to mind, most of them having to do with the environment we live in, especially in the United States. It’s in the water we drink, the food we eat, the milk we were told was good for us as children – industrial chemicals. Even though I stopped buying non-organic food some time ago, the major risk factors associated with pesticide consumption happen during childhood, when concentrations are higher by body weight and the immune system is still immature. Though the US government won’t admit it, chemical pollution is probably at the root of a great many cancers in this country. I found a factoid online somewhere during my many hours of reading: Asian women triple their chances of getting breast cancer when they move to this country. Riddle me that. The amount of pre-menopausal breast cancer is on the rise and the government is not only not paying attention, they’re trying to slogh it off. Better detection methods, they trumpet. But most women don’t find their cancer through high tech detection…they find it putting on their bra to go out jogging, or in the shower, or leaning over to look in the mirror. Gagetry gets us next-to-nowhere. Hell, all the biopsies and MRIs and Sonograms and Mamograms I went through completely missed two out of the three tumors that were actually present in my breast. And I found the first one.

What do I do about anger? Well, apparently I wait. I talk to my therapist. I talk to my husband and my friends and my family. But mostly, I go find the little pink pills and wait it out. What else do you do? It’s not like I can go wallop someone on the head for giving me this awful condition (it’s not a disease – it’s not). I can rant and rave here and try not to take it out on my kids (bless them – they seem to react to me being stressed by driving me up a wall).

Who do I get mad at? Ah…this is the really tough one, I suppose. It’s not the doctors/nurses/support staff, though that would be easy. It’s certainly not my family and extended support network. In this, I have to become a conspiracy theorist, an anti-capitalist, a soap-box diva. I’m going to blame it on government, big business, and the bottom line. Because all three basically say, “We can’t fix the environmental problems in this world. It would cost too much money.” Well, for some of us, it’s costing a lot more…it’s costing us our lives.

My very helpful and informative oncologist, Dr. Sandbach, discussed my various extended treatment options with me the last time I visited the office. We determined that 2 1/2 years on Tamoxifen was the best place to start and he handed me a prescription. I took the prescription home and proceeded to stare at it for a week. I used it as a bookmark. I didn’t get it filled. Yes, yes, yes, I knew exactly what I was doing, but some part of my brain just wouldn’t allow me to get up and drive to the pharmacy and fill the silly thing. You see, I want to be done. I don’t want to be a cancer patient for the rest of my life. But in this, as in many other things lately, I don’t get a choice. Sam finally talked me into going and filling it and after actually having it in hand, taking it wasn’t really a problem, but I resent it.

Heaped onto all of this muck is the fun, fun, fun of still battling the mighty fungus (thrush) and the fact that yesterday I was diagnosed with shingles. Both of these happen to a lot of chemo patients. Your immune system is compromised, so the baddies move in. It actually helps to know that, otherwise I might be tempted to add persecution paranoia to my list of personal issues. But shingles sucks. Basically, you had chickenpox as a child and the virus stays on in your system. When your immune system hits rock bottom some of the virus moves up into the nerves near the skin. In my case, I have a little patch of spots (looks just like chicken pox) on the left side of my neck that started out being itchy, but are now very painful. The doc at CFM prescribed some anti-virals, which should shorten the course of the outbreak and keep it in check, while hopefully sparing me permanent nerve sensitivity in that area. And presumably, as I’m a fairly healthy individual normally, this will be the only outbreak I have and then it will be over. Knock on wood, spin three times and spit. My luck hasn’t been the best lately.

And having said that….the effects of chemo are not just cumulative…they’re a bit exponential. Of course, the doctors try to tell you this without really stressing it too much (otherwise, it would scare the bejeesus out of you). I don’t think I got back ‘up’ after Round 5. I was still tired and draggy going into the last round. I remember being very resigned. They had a little graduation ceremony for me where they hand you a certificate and throw confetti all over you, but I’m pretty blurry about that as I was doped up on narcotics for the nausea. On the day after the treatment (Wednesday), I drank over a gallon of liquids (I’m not kidding) and I don’t think my body held onto any of it. There comes a point where your digestive tract is so brutalized that it just won’t do any work. So when I went in on Thursday to get fluids, I looked dessicated. The skin had shrunk between the finger bones in my hands. I was ashen and my skin looked flaky. And I felt like an invalid. I absolutely hate that. Fluids on Thursday and Friday was a good idea, but I think Saturday and Sunday would have been a good idea as well. Unfortunately, they don’t do that at my oncologist (probably not anywhere). I think they should really. If you’re going to be in the business of pouring toxins into people you ought to be ready to care for them on the weekends as well. I don’t mean offer regular office hours or doctors visits, but fluids and emergency care…that seems a given. Not so.

Then there were the other things that didn’t show up until the last round. I got rings on my fingernails finally. Kindof like the rings on a tree. One for each round. Much to my dismay, my eyebrows and eyelashes fell out. After holding out all that time, I thought for sure I was going to keep them. And then, a week after, I woke up to black mold on my tongue. I panicked (Sam knows that particular tone to my voice, but not from great experience). I thought I had the plague. I had thrush..badly. I’ve now been on diflucan for almost a month trying to get rid of it (and drinking loads of yogurt, etc). Blech. Apparently, this is very common as well. Yipppee for me.

The Nurse Practitioner at my oncologist calls all of this ‘toxic saturation’. One of the practitioners at my family doctor’s office told me, “The come as close as they can to killing you, in order to kill the cancer.” Charming. I’m still thinking this is very middle ages…bleeding people to pull the bad out of them.

Now the real fun begins. After Surgery, more Surgery, Chemo, Recover, Chemo, Recover, Chemo, Recover, Chemo, Recover, Chemo, Recover, Chemo….we do….not much. I’m going to be on Tamoxifen for 2 1/2 years, and I’m supposed to see my doctor every 3 months, but other than that, nothing. No tests…no, well nothing. This is very disconcerting. For the past 6 months I’ve been doing, doing, doing. And although everything I’ve been doing has been horrifying and difficult, I’ve at least felt like I was actively fighting something. Now, I’m supposed to sit and wait. I feel like I did when I was 6 years old and I was supposed to be going to sleep, while the monster in my closet was waiting for exactly that.

There are other topics that should be here….Premature Menopause, Post Treatment Anger, Return to Life, Genetic Testing, Move Through Cancer….I’ll work through those soon. Watch this space….I’ll be sitting here…waiting.

The fact that I’m blogging Round 5 on the morning of Round 6 should tell everyone something. For one, I’ve been too darned busy. For another, I’ve been too darned tired. And for the most part, I just didn’t have much to say that wasn’t gripy or whiny. I know, I’m entitled, but I’m pretty certain noone wants to read it. 🙂

So…today is the day. One last session of drip, drip, drip and I’ll be done (with this part of the process). Everything in this round will be for the last time. Last time with the nausea, last time my mouth feels like old shoe leather, last time I can’t taste anything for a week, last time I’m completely exhausted for weeks but, ironically, can’t sleep. And then it will actually start to improve in ways I get to keep.

Aidan still has a bit of a Samson and Delilah syndrome with my hair. For him, it all comes down to when my scalp starts sprouting. Then I’ll be able to run and play and take them to the park. I’ll be able to come garden at the school again and read them stories at night and help them in the bath. I thought this was a bit quaint when he first came up with it many, many months ago, but he’s not far off. Some of it will be psychological, but a lot of it is timing. I should start to see actual hair grown in about 6 weeks (the first stuff, in 4 weeks, is fuzz and needs to be shaved off again). That really should be when my strength starts to return. And right about then we’ll start looking at having a really big party to celebrate. I promise not to bring the house down.

:)k

On this round we turned the corner, went over the hump, started rolling downhill (hmmm). In a way this is a very heartening thing. I can see the end..literally less than a month from now. However, I have two more treatments in that time…not so nice.

Birthdays have become both more and less significant this year. On the one hand, Aidan turns 5 tomorrow. His party is this afternoon. I look at him and think, “Ah, he’s not a baby anymore. He’s not even a little boy.” He’s a big boy now and that’s a good thing. Sam and I have done a fair job raising him so far. He is kind and fair and polite to everyone (except his mother and sometimes his sister :). On the other hand, my birthday was on Wednesday and I just couldn’t get there. The day was an absolute drag. Somehow the anniversary of my birth has been eclipsed by the anniversary of my diagnosis. In the next few years, and really for the rest of my life, a great deal of emphasis is going to be placed on how many years I survive from diagnosis. Kinda takes the wind out of turning 36.

This round was both easier and more difficult. Most of the ‘side-effects’ were lessened. I wasn’t as nauseous. I didn’t have any mouth ulcers. I slept better. However…I’m sooooo tired. When they said the exhaustion was cumulative, they weren’t kidding. I’m pretty sure after the last round, I’m going to be a slug for a good month. The onset of winter (and chemo) have done strange things to my skin as well. I knocked on a friend’s door and split my knuckles open. And little injuries and bruises take an age to heal. I’m also dry, dry, dry. Like a normal winter magnified. We’re moving into the holidays and Sam will be home quite a bit for the next few weeks. That should make it easier to rest and recoup between rounds 5 and 6.

Thanks for everyone’s well wishes. We’re always glad to hear from everyone and see folks…just call if you’re going to drop by and check with Sam on my counts. I want to finish on January 3rd…no delays.

:)k

So…when you’re going through chemo, you discover the true vampiric tendencies of the oncology staff. Every week (Tuesdays for me) they want more blood. There are a number of reasons for this, but the main checks are for anemia, low whites and platelets. Let’s start with anemia…

Anemia is defined as : A pathological deficiency in the oxygen-carrying component of the blood, measured in unit volume concentrations of hemoglobin, red blood cell volume, or red blood cell number. The result of having anemia or being anemic are that you’re tired as hell. I don’t mean tired like, “Oh, if I go catch a cat nap I’ll feel much better.” More like, “Geesh, if I don’t lie down right now and stay there all day, I’m going to fall over.” I’ve never, ever been that tired in my life, and my anemia has been fairly moderate. There are certain measures that can be taken when one finds oneself with a lack of red blood cells. Including more leafy green veggies in your diet is one of them…I’d have a hard time adding more right now. So I’ve been taking iron supplements in the form of a liquid called Floridex. I must say this is definitely a case of the cure being almost as bad as the cause..at least for the first few minutes. Liquid iron supplements smell and taste really, truly, profoundly bad. In a world that creates cherry flavoured cough syrup for children, you would think they could take a bit of the ick out of iron, but…there it is…

On to low white counts. White blood cells are used to fight infection in the body. Chemotherapy can (does) reduce the number of white blood cells available in your body; therefore, having a low white blood cell count (WBC) can significantly increase your chance of infection whether it be a cold or flu or a cut on your finger. The day after chemotherapy, most women get a shot of filgrastim (Neulasta, in my case). This helps increase WBC by causing your body to hop up production. Unfortunately this can also make you tired and often achy as your bone marrow tries to overproduce. It can also lead to long-term issues like osteoporosis. In my case, low WBC cause me to need to eat, constantly, for a couple of days. If I don’t keep up a high calorie, high protein intake every couple of hours, I get dizzy and nauseous. S’okay by me, but I have to make sure to have easy, quick meals on hand. The feeling can sneak up on me.

Platelets are the cells that help wounds to clot and heal correctly. If your platelet count drops, everyone gets really nervous. Blood blisters and unexplained bruising can be signs that your platelets have gotten too low. If this happens to you (even tiny blood blisters), your oncologist’s staff is going to wig out and send you in for blood work…right now! I found this out the hard way, having found a pin head sized blood blister on the inside of my cheek. By the time I found someone to sit with Cass and got over to the office to have my blood drawn the silly thing was gone. My platelets were fine. It’s something that you would just ignore in everyday life, but this is, in fact, the twilight zone of chemocare.

Having said all this..round three was okay. Recovery was a little protracted because Sam and I got a flu vaccination the day before and it extended the general ick period. And speaking of period, I’m now barreling into menopause. There’s nothing like having your least favorite ‘friend’ arrive every other week, with insomnia and hot flashes included. I’ll be 36 in about 2 weeks. Woohoo! Sam and I are going to lay low for Thanksgiving (since I’ll be stupid and have no taste buds), so the kids are going to go home with my mother for the big event. Have a piece of pie for me.

:)k

A 180 in many ways. Let’s see….no vomiting, totally controllable nausea, no shakes for 12 hours, and the morning after chemo I was at the breakfast table with my family…eating. I didn’t lose weight this time. In fact, I’ve gained back all the weight I lost from the first round. ‘And why?’, you rightly ask. Because the unmentionable option, the silver bullet of chemotherapy side effects, the miracle drug…worked. Now ask yourself this: What unspeakable bastard would knowingly withhold such a simple solution to such a horrid problem to so many people who need it badly? Apparently a great number or our congressmen (not to mention the man we’re forced to call ‘president’) both at the state and national level. There are many, many patients who are unable to finish their chemotherapy because the side effects take too great a toll on their otherwise healthy bodies and yet the government has decided that it is preferable that they increase their chances of recurrence or even die rather than make this drug available to them. I would go so far as to say that it may be criminally negligent to withhold or deny anything that helps patients survive cancer and chemo. So….

Senator Gonzalo Barrientos: District 14

Representative Elliott Naishtat

These are my state congressmen. Please…write a letter/email (it can be anonymous). Find your congressmen, national or state, and write them. Let them know how outrageous it is to keep something so benign out of the hands of patients while our doctors prescribe narcotics and antidepressants with abandon.

Thanks…
:)k