An Afternoon With the Great White Hope

80’S CANCER JAM OF THE DAY:

Last week, in my sepsis-induced stupor, I dragged myself to an afternoon appointment with a new doctor, an integrative MD. Although my temperature was 102, I wasn’t about to call it off; I’d already put down a $150 deposit on my credit card. As I told you last time, the visit was exorbitantly expensive and not covered by insurance. So was it worth it in the end?

dog poop3

The short answer- yes and no. Hey, I never said I was good at making a decision. In all fairness, I felt like a pile of dog crap in the middle of the interstate that had been sitting in the sun all day and had been run over hundreds of times, so I probably didn’t get as much out of our talk as I otherwise might have. I think my opening line to the doctor was “I just want you to know that I’m not going to be my usual animated self today. Do you have any ibuprofen? Or…is that a no-no here?” Thank God he wasn’t above ibuprofen. It saved me from lying on the floor during our consultation.

My appointment lasted over 2 hours. Brownie points for him. He asked me what my main concern was in coming to see him. Well, um, let’s see, there’s THE CANCER! Yes, but what did I hope to accomplish? Perhaps strengthening my destroyed immune system, finding a way to deal with the sudden and unwelcome death of my ovaries, and, I don’t know, preventing a recurrence of THE CANCER! Yes, I’m a smartass. It’s kind of my thing.

pill purse

My New Purse

First, we went through all the usual review of systems. How’s your diet? Do you drink? What other medical issues do you have? What medications are you taking? What’s your family history? Then he wanted to see my supplements, which I had brought in a grocery bag. I felt like kind of a weirdo or a super-healthy bag lady dragging that in from the car. He laughed, “Oh, that’s nothing. People come in with suitcases full of pills”. Ok, so as supplement junkies go, I don’t qualify for rehab just yet.

He carefully examined each bottle, after which he told me that he approved of the combination I was taking but would add a couple more, namely DIM and quercetin. He also suggested that I change my co-Q10 to a 100mg gel instead of a capsule. I thought he would frown on the Nature’s Valley brand that I use for a few of the more common nutrients, but he didn’t judge. In my opinioin, Vitamin D3 is not going to change much over brands, but something like coQ10 or echinacea can vary widely in quality, so I go for high quality on those.

Next, I asked his opinion about my upcoming radiation. He didn’t outright tell me that he wasn’t a fan. I’d say he hedged his bets. “It works well for some people, but not for others.” Thanks. What a relief! Not. He did say something interesting, though. Keep in mind that this is an MD educated at Cornell, so he has to be careful in his assessment of his colleagues. “I will tell you that the radiation guys tend to sugar coat the side effects more than any other doctor involved in cancer care. Even more than the chemo docs. I would be very aggressive in getting your questions answered so you feel comfortable”. Now we’re getting somewhere.

radiation cartoon

Next, we turned to the evil menopause monster. I say that, but truly the symptoms come and go. The hot flashes at this point are annoying but not unbearable. The worst ones are those that happen in my sleep. I sometimes wake up soaking wet, freezing, and I have to change my shirt. Thank goodness that isn’t every night. My mood is also undpredictable. Some days I feel fine, although a sappy commercial will make me cry. And some days I just want to run away and start a new life somewhere.

Dr. Cornell pleasantly surprised me on this front. He said that he would be very comfortable prescribing estriol, the weakest and most beneficial estrogen. He is familiar with the work of Jonathan Wright, MD, and even produced a copy of his book, “Stay Young and Sexy With Bio-Identical Hormone Replacement”. I was impressed. He told me that he wanted to do a little more research on using it instead of/with Tamoxifen and we would discuss it further at my follow-up visit, which is in mid-October. I may never use it, but it’s so nice to have options and not to be looked at like I have 3 heads.

estrogen-cartoon

Finally, I asked about diet in relation to breast cancer, fully expecting to hear, “You have to go low-fat vegan immediately. No dairy, no meat, no sugar, kale out the wazoo, etc.” I braced myself. Again, I was pleasantly surprised. “I believe that you definitely should be eating as much organic produce as you can, and, of course, grass-fed natural meats.” What? Hold the phone. Meat? Could it be?

“You mean I don’t have to become a vegetarian?” I asked, afraid I had misunderstood. “No. I believe diet is only one piece of this puzzle. Look how many variations of diet there are in different cultures and in different parts of the world. Many of these people live long, healthy lives with very low incidence of disease. If it were that easy, we could all eat one diet to avoid cancer. That isn’t the case.” Finally! Someone has ideas that are in line with my own on the subject. Do I believe I need to seriously increase the amount of vegetables in my diet? You bet! Do I also believe that I can never have a piece of meat or cheese again? No way.

So did I learn a ton of new information from my visit? Not really. I’m still waiting for the practitioner who will blow me away with a wealth of knowledge. Maybe I sell my own knowledge short. I guess I really do know a lot about health. I did, however, find someone whose views resonate well with my own and who doesn’t think I’m completely off my rocker for not wanting to just go along and shut up.

Like that was ever going to happen!

An Angel With A Scalpel

80’S CANCER JAM OF THE DAY:

Well, I’m back. Full of crap and mean as ever. I did get the award for the “coolest germ name of the week”, Enterobacter sakazakii. That’s the little guy that took up residence in my port and infected my blood last week. It sounds like a ninja or a motorcycle gang member. I probably got it because I wear bandanas all the time like I’m waiting for Peter Fonda to cruise up and strap me on the back of his hog.

by Amy Merrick

by Amy Merrick

Anyway, I started feeling much better on Saturday after the antibiotics kicked in. I even got out of the house and walked around the mall for a while. But..my doctor left a message telling me that he would extend my antibiotics to 2 weeks (yuck!) and that I needed to get that nasty little port out ASAP.

You know what 2 weeks of antibiotics usually means? Hellooo, yeast! I’ve done well controlling it to this point with big-gun probiotics, but 2 weeks is a lot to ask. I’m hoping I’ll wake up soon and find out this whole year was a dream, just like that episode on Dallas with Bobby in the shower.

bobby ewing

 

As for the port, that presented a rather awkward situation. After I had my mastectomy, I discovered to my horror that my breast surgeon was not in network with my insurance company. I have no out-of-network benefits. This left me responsible for $4000. Since he was due to insert my port two weeks later, I drove frantically to the office to explain what had happened. The office manager couldn’t have been nicer. She told me not to worry about the upcoming surgery and to let her deal with the insurance company. I also heard that my surgeon was informed about the situation by the girls at the office. His reply? “Tell her not to worry about that.”

I had the port inserted back in May and waited to hear what the final tally would be for services rendered. I expected that the surgeon’s office might work out a payment plan or a reduced fee. As it turned out, I’d be waiting a long time. I never received a single bill.

Fast forward to today. My breast surgeon works in the hospital on Mondays and Tuesdays, upstairs from me. I gathered my courage and went to talk to him, still feeling more than a little sheepish about the fact that he has done nearly $10,000 worth of work on my behalf for no charge. I fully intended to ask him for a recommendation of another surgeon who would be covered by insurance. When I explained what had happened with the port infection and sepsis, he excused himself for a minute. When he came back, he said “How’s 4 o’clock?”

I thought “Surely he’s forgotten about my whole insurance fiasco.” I reminded him gently. “As much as I’d love to have you for my personal surgeon forever, I have that pesky out-of-network insurance. Remember?” He nodded. “Not a problem.” I have been continually blown away by this man and his kindness and generosity in a field full of greed and arrogance. I’m trying desperately to think of something I can do to show my appreciation, but nothing seems worthy.

As for the huge honking port that has been jutting awkwardly out of my chest all these months, it died a quick death at about 4:45pm. So long, sayonara, adios. Don’t let the subclavian vein hit you on the way out.

There are angels walking among us.

An Unwanted Visitor

This post want have the usual songs and fluff. I’m writing it on my iPad from my bed. Just the facts ma’am.

Yesterday was supposed to be a momentous occasion as cancer goes. My last chemo treatment. Yay! I had been fighting off a mild bug and low fever since last Saturday but had started feeling better.

I went to the oncology office and started the same as any other trip. Insert the carpet tack needle in the port. Draw the blood to check white count. The white count was pretty low at 2.1, but chemo was a go.

I picked a room, and there turned out to be a lovely outgoing lady from Boston in there. We chatted for quite a while, enjoying each other’s company. It was really refreshing not to be sharing a room with someone who was dying or going on in depth about their stage 4 recurrence. She laughed easily and heartily. “This is going to be a good session”, I thought to myself.

I got the first infusion, the Benadryl and Pepcid, and settled in. About 10 minutes into it, I started to feel very cold. I asked my son for one blanket, then two. Then the shaking began. I shook uncontrollably and violently for the next 15 minutes. It wasn’t so much from being cold. I felt almost like I was having a mild seizure.

When the nurse came in, she tried to take my temperature and my blood pressure but couldn’t get my trembling body to cooperate. After a few minutes of valiant effort by the nurses, the doctor came in and decided that chemo was definitely not going to happen. He asked them to draw blood cultures, one set from the port in my chest and one from my arm. This was to make sure no bacteria had made its way to my bloodstream. I also had to give a urine specimen to check for a UTI.

The shaking finally subsided after what seemed like an eternity. I had been feeling intuitively iffy about this treatment all week, as though I were pushing my luck and my body was trying to tell me it was done. Talk about a sign. I decided right then and there that this session would have no rain check. My doctor agreed that the benefit of 12 vs 11 treatments was not significant.

i went home briefly as I had my first appointment yesterday afternoon with the integrative MD (More good stuff on that later). I felt like I was getting warmer, so I took my temperature. 102..uh oh. I struggled to the doctor’s office but was able to get through it with ibuprofen.

Once the drugs wore off, the game was on. I went to bed and stayed there all night. I felt extremely hot at around 10 pm. 104.. Not looking good. I had my husband call the doctor on call who was…you guessed it…the guy I broke up with. His advice was to combine Advil with Tylenol to get the fever down. It probably had something to do with my reaction to the Benadryl earlier. Huh? If I couldn’t control the fever, I was to go to the ER.

I thought he was pretty cavalier about the whole thing, but I made it through the night and woke up drenched. The fever had broken, thanks in large part, I suspect, to the two different antibiotics I started yesterday. You should know that I never take antibiotics. I usually stuff the prescription in the bottom of my purse and handle things my own way. Something told me not to do that this time.

Imagine my surprise when I found out this morning that my blood is growing bacteria, most likely E Coli. What!?! Where the hell did that come from?Usually a person becomes septic with E Coli when she has a perforated  bowel or a raging UTI. No on both counts. The urine culture was negative. My only explanation is that this bacteria had to have been introduced directly into my bloodstream during one of my various treatments, probably last week.

I guess we’ll never know. Anyway, I’m taking the antibiotics and hoping for the best. My fever has cooperated so far today, but the doctor has put me on a “short leash”. If the fever returns I get to take a trip to the hospital.

i’m tired, but I’ll keep you posted.

Lymphedema Self-Massage For Prevention and Relief

80’S CANCER JAM OF THE DAY:

When I had my double mastectomy, I had 16 lymph nodes removed on the left side and the sentinel node removed on the right. Since one of the major functions of the lymphatic system is to carry fluids from the tissues and cellular spaces back to the bloodstream, fluid accumulation can become a real problem after this surgery. This is mainly noticeable on the arm and fingers of the affected side and can be severe, sometimes requiring the use of a special compression sleeve along with physical therapy.

lymphedema

I was lucky enough to have an appointment shortly after surgery with a lymphedema specialist at the rehab center. I had no symptoms at the time, but she showed me some simple self-massage techniques I could use to prevent fluid accumulation and to manage it if it became an issue. I have used the self-massage regularly, and I haven’t had any significant problems.

Since the diagram she gave me was a bit cluttered and marked up, I found the video below which I think is pretty good, although very extensive. I would note that the lady in the video does not massage the armpit on the affected side. I do, and I think it helps.

As I’ve mentioned to some of the ladies I talk to, I feel that exercise has been the biggest factor in preventing lymphedema for me. I can tell a huge difference in the fluid pressure if I don’t get some aerobic activity in for a few days. I’m a runner, but I don’t think you have to go to this extreme, unless you want to:) Even brisk walking, while swinging the arms, will help to keep the lymph from stagnating. Lifting weights is also beneficial, and I try to do this at least once per week using some simple exercises with free weights.

I hope you find the video helpful.

I Had To Buy New Big Girl Panties….

inspirational quote

Life for the past week or so has been rough. I went on the fabulous, soul-sustaining trip to Florida with my son, and the after-glow lasted for several days once I got back. I felt like a new girl, like I wasn’t in the middle of a grueling 4-month course of chemo. Then the crash came…

Last Tuesday, I woke to the most overwhelming sense of sadness that I’ve had since finding out about the breast cancer back in March. It came out of nowhere and threw me for a real loop. It felt exactly like the neurotic, post-partum funk I always experienced when I brought a baby home from the hospital. I lost my bearings, and I couldn’t control the tears which flowed freely at the drop of a hat.

I chalked the emotional avalanche up to the complete dearth of estrogen in my body caused by the chemo drugs. Interestingly, I have to say that Adriamycin, aka “the red devil”, didn’t feel as inherently toxic to my body as Taxol has. Yes, it made me more physically ill with nausea, heartburn, etc, but I feel intuituvely that Taxol is leaving a more lasting, albeit silent, wake of destruction. For all it’s red rage, Adriamycin did not stop my menstrual cycle. First drop of Taxol = “instant menopause”.

I had an appointment with the oncologist at last Thursday’s treatment. He asked how things were going. I held it together for a few minutes as I described how horribly I was struggling with the emotional aspect of having no estrogen. I asked if he had read the research about using low-dose vaginal estrogen to help with menopausal symptoms in breast cancer patients. He said that he had, but that he didn’t feel comfortable doing that because he wasn’t sure how much estrogen would be released systemically. Game over. I started sobbing.

He went on to tell me that I could get anti-depressants and lubricants, neither of which appeals to me as a long-term solution. I explained that I had been on anti-depressants for post-partum issues and that it took me 6 years and 25lbs to break out of that prison. I finally got to a happy, balanced place with the running and the healthy diet. Then this shit happened. I almost felt sorry for him because he is a genuinely caring person, and I know he felt bad that he couldn’t offer me any real hope. His advice was, “Don’t get ahead of yourself. Just take things one day at a time.” Ok.

Today, I am in a little bit of a better place. Ever the problem-solver, I took the advice of my Gyspsy goddess acupuncturist and made an appointment with an integrative MD that she knows well and respects. She assured me that I would really like him and that he is very open-minded. I hope so…the initial consult is $465 for two hours. And of course, he is not covered by my insurance. I’m a little very leery of spending this much out of pocket since I know there will inevitably be follow-ups and supplements, but I really want to meet a doctor I can fall in love with and who gets me. I will run my hormone hell by him.

I have also been reading more inspirational things on the web lately. I went on the BreastCancer.Org discussion boards yesterday and read about ladies who are 5 and 10-year plus survivors of Stage 3 breast cancer. Some were even 25+ years out with things like triple-negative status and 20 positive nodes. I needed to see that. They are living normal lives and having fun, and they don’t spend every day anymore worrying.

I’m considering doing a 5k to celebrate the final round of Taxol next week. Friends are uging me on, but I don’t know if I’ll be able to pull it off two days after chemo. I’ll go with my gut when next Saturday comes. Whenever I get back to racing, I have designed the t-shirt I’ll wear:

5K CANCER SHIRT

5K CANCER SHIRT BACK

I’ll keep you posted…until then I’m pulling up my crisp new pair of big girl panties and reclaiming control.

Bald and Breastless Meets Fat and Toothless

80’S CANCER JAM OF THE DAY:

Ahh, Fall. The leaves are starting to show off their red and gold hues. There’s a little nip in the morning air. The kids are back in school. And Darryl and his other brother Darryl pull out their cleanest pair of overalls, splash on some Electra aftershave, grease up the mullet just right, and drive the pickup with monster tires over to the Mountain State Fair.

redneck

Yes, my family and I voluntarily head to this spectacle each September to see what canvas of humanity will spread itself before us. We are never disappointed. No matter how sophisticated Asheville gets over the years, you will find the same group of redneck troglodytes that has inhabited the fairgrounds since 1957. I don’t know where they come from. I don’t see them in my everyday life, grocery shopping, walking in the park. Yet they band together en masse at fair time.

Let me see if I can’t paint a picture that will burn out your retinas as it has mine. This year, our fashion contest winner was a 60-something cougar wearing cut-off denim shorts that revealed her sagging ass cheeks with the prison heart tat on one side. She paired this artfully with a skin-tight midriff-baring satin tank. Her nipple ring kissed her belly button ring just so. When she smiled, her three meth teeth sparkled as they held her cigarette dangling elegantly from her bottom lip. It’s a good thing I wasn’t on the prowl for a man; I didn’t stand a chance.

redneckgrandma

Then we had the 400-pound woman wearing tight knit slacks and compression stockings to keep her from getting a blood clot as she made her way to the fried mayonnaise balls (seriously). She stopped in kiddie land to let her grandson ride the carousel and to rest on the fence. As she reached for her pack of cigarettes, she dropped her cane. Luckily, her 500 pound son came to her rescue with a folding lawn chair just in the nick of time. Phew!! She collapsed in the chair and lit her Marlboro black.

obese woman

And let’s not leave out our parent of the year award. Remember Darryl from earlier in our story. He brought his family out for a lovely evening at the fair. He in his overalls with no undershirt and his blonde Joe Dirt mullet. He was also rocking the home-drawn tats up and down both arms. Darryl was pushing the baby in a stroller, keeping him content with a bottle full of Pepsi. Running a few steps ahead was an older boy, maybe 4 or 5. We’ll call him Darryl Jr.

Darryl Jr. was fairly rambunctious in his excitement to go on the rides, probably a side effect of his awesome nutritional plan. He kept getting a little too far ahead of the rest of the family, and Dad would yell at him to come back. This went on 2 or 3 times, and then Darryl had to pull out the Dr. Spock parenting manual for his next move. He screamed out, and I’m not making this up, “Jr.! Get your ass back over here or I’m gonna break your fuckin’ legs!” Well, let me tell you, I think he must have the right idea, because Jr. sprinted back to the family, no questions asked, no time outs. I’m definitely writing this down for future reference.

Once I got my steak pita and hot apple dumplin’ fix, I decided that I had just had too much fun for one night. The senses can only take in so much. I waddled back to the car and tried to erase the images from my mind. I want to have a clean slate for next year.

 

 

Can Breast Cancer Make You More Beautiful?

80’S CANCER JAM OF THE DAY:

Breast cancer is a strange creature. It strips you naked, knocks you down, and kicks you in the teeth. Your entire world turns upside down in an instant, and everything that was once comfortable and predictable becomes strange and subject to scrutiny.

 

You no longer take for granted that you can “just put it off until later”. Time takes on a new meaning. You feel simultaneously that there is some urgency both to getting on with the things you want to accomplish and to to letting go of the things that you have “put up with” even though they don’t really contribute to your life in a truly meaningful way. Call it an instant attitude adjustment.

 

So how in the world could something so disruptive, so disfiguring, and so callous in its utter disregard for its victims make you more beautiful? Certainly not in the traditional sense. My definition of beauty has never included a bright white bald head and either scars where my breasts used to be, or, looking to the near future, a slow progression of Frankenboob construction projects.

 

 

Yet, as I have meandered my way through the breast cancer jungle, some strange new revelations have appeared. I was at the chiropractor’s office two days ago, and he asked if this diagnosis has caused me to seek out new and exciting adventures that I might not have pursued otherwise. You know, “sky-diving, Rocky mountain climbing, going 2.7 seconds on a bull named Fu Manchu”. Not exactly. I think that the key for me has been in not putting off things I had planned to do (like the Florida trip with my son) and savoring them more.

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Then it occurred to me that I have noticed something completely unexpected and rather pleasant from this whole experience. I have always been fairly blessed in the looks department. I don’t take credit for it; I just have good genes. My mother is now 68, and people ask if she is my sister. She has always used her beauty to her advantage, and that’s the behavior she modeled to her daughters. I’m not a prissy girl by any means; I can camp with no bathrooms or showers. But, I have always been acutely aware of how I look and, as most attractive girls must admit, I have gotten a bit of a free ride.

 

As every last layer of my traditional “femininity” has been peeled away over the past few months, I have discovered a brand new girl hiding inside. I now find myself engaging on a deeper, more genuine level with people. I don’t know if I feel like I have to try a little harder because they aren’t drawn to my looks or if I just feel more vulnerable and open these days. But people are responding to me in a friendlier and more positive way. Don’t get me wrong. There are still days where I’m moody and don’t want to be bothered being “social”, but I feel more like an authentic version of myself than I ever have.

Rose

Rose (Photo credit: Wikipedia)

So….can breast cancer make you more beautiful? I think that the resounding answer would be “YES”. Once the artificial constraints of societal beauty have been forcefully abandoned, there is a kind of truth and peace that emerges within your raw being. You no longer have to conform to anyone else’s blueprint; you are free to find your own.