Breast Cancer Christmas Carols

I would usually insert an 80’s CANCER JAM OF THE DAY here, but I have a special treat in store for you. Nothing captures the spirit of the holidays more than “The Twelve Months of Treatment”.  Who wants a partridge in a pear tree anyway?

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In the twelve months of treatment, breast cancer gave to me:

Twelve dates with Taxol,

Eleven flashes flashing,

Ten years of payments,

Nine nurses poking,

Eight pain meds I’m milking,

Seven different doctors,

Six weeks of burning,

Five years of Ta-mox-i-fen!

Four kinds of scans,

Three sur-ger-ies,

Two missing boobs,

And sep-sis from the port they put in me.

Can’t you just hear Bing Crosby in the background while you’re roasting those chestnuts? And no, I don’t really have 8 pain meds!

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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.

Taxol #5 And Dinner’s On Me

80’S CANCER JAM OF THE DAY:

 

***RECIPE IS AT END OF POST***

Today was chemo day; the 5th overall and the 3rd of my weekly treatments. Always being the rebellious child, I started out with 2 dose dense treatments and decided really fast that those were for the birds. So, I switched to a weekly regime with a lower dose and caused my new doctor to have to do math and stuff. He sentenced me to six more weeks with no chance of parole. Fast forward to today, and I have 3 weeks left!

Last week was sooo nice, as chemotherapy goes. My white blood cell count was low, so my dose was reduced even further. That was the best I have felt after any treatment, ever. My mom came to stay for a few days because my husband had knee surgery on top of everything else. You know, chemo just doesn’t present enough of a challenge sometimes. I went for the lightning bonus round! We were able to shop all weekend, and I actually felt pretty decent in spite of having a Neupogen shot on Friday and another on Monday. Let me tell you, Claritin is the ticket if you have to get cell booster shots. No bone pain whatsoever.

burka

Unfortunately, I gallivanted around so much that I caught a nasty cold Monday. So here I am, this pitiful creature with a bandana and a snuffy nose. Quite a lovely sight! I should probably wear one on my head and one over my nose and mouth so I don’t get germs. Too bad I’m not Muslim; a burka would be perfect for someone in my situation.

I find that I’m able to do a lot more of my usual activities with weekly Taxol. I just get a little tired two days after infusion, and my hemoglobin is going down again, uggh! Today it was 10.6, which isn’t terrible, but normal for me is 14, so I’m really feeling the effects when I try to run. There’s just not enough oxygen to do any sustained exercise. But I’m still getting out there at least twice a week to keep some level of fitness. I’m not expecting to be in top shape. (Ok, I do get a little frustrated, but I’m trying…) 🙂

Today I’m going to share a recipe that requires a little more prep than the others you’ve seen, but it’s very healthy and tastes delicious! So the extra effort is worth it. A food processor would be a Godsend for recipes like this. I don’t have one, so it takes a long time to dice all the veggies. I’ll be getting one soon.

STUFFED PORTABELLA MUSHROOMS

Ingredients:

1 diced yellow squash

1 diced zucchini squash

1/2 diced sweet onion

1 cup diced mushrooms (can dice portabella stems)

6 large portabella mushrooms

organic canned diced tomatoes

4 servings basmati or wild brown pecan rice

1/2 pound browned meat (I used mild Italian sausage)- optional

shredded mozzarella cheese to taste

Directions:

Cook rice according to package directions. Dice all vegetables. Wash mushrooms thoroughly and pat dry. Scrape ribs out of mushroom caps gently with a spoon to make room for filling. Brown Meat; drain and set aside. Hover over pics below to see captions:

Bake at 400° for 8-10 minutes. Serves 4-6, depending on appetite.

Well, I’m off to dice veggies…enjoy.

I’m Breaking Up With My Oncologist

80S CANCER JAM OF THE DAY: 

 

THE LETTER

Dear John (and, ironically, his name really is John),

We’ve only been together for two months, but I feel that the strain in our relationship has finally taken it’s toll. I should have listened to my little voice when we met. You know, that annoying voice that a girl tries so hard to ignore when it whispers “He’s not the one”. But the voice is always right, no matter how we fight against it.

You were Mr. Available when I needed you. You were charming and bright-eyed, and you said all the right things. But something nagged at me. I felt in my heart that you had said those same words a million times before to countless other girls. “You have breast cancer, but it’s not the end of the world. We’re going to throw the kitchen sink at it, and we’re going to beat this thing”. How I wanted to believe in you. But I realize now that it was a script that you had memorized for just such an occasion.

I stuck with you, even though at times you seemed too busy and preoccupied for me. I forgave you. I rationalized it to myself. Then there were the off-handed comments. I remember just last week when you told me that my ovaries would “soon be dead” from the harsh chemicals. And in the next breath you made me feel stupid for icing my hands and feet to try to prevent nerve damage from Taxol. I had never seen this side of you before. You were almost mean, but you said it all with a smile, so who could fault you?

The final straw came last weekend, when I lay in my bed trying to recover from a brain-numbing migraine after treatment. I did everything I could to handle it with my usual fierce independence, but it wouldn’t relent. At 7am Saturday, I finally broke down and paged the doctor on call, hoping for some helpful advice or a magic spell. He was kind and did help somewhat, but in the end I just had to tough it out.

I know that your colleague filled you in Monday morning, but you never called to check on me. Knowing how upbeat and positive I am, and that I have never complained once about treatments, side effects, or about having this shit-ass disease in general, something should have clicked in your brain that this was definitely out of the ordinary. Something along the lines of “Wow, she’s my model patient, I’d better see what’s going on.” Instead, I had to call your office and try to get an appointment before my next treatment so we could figure out how to stop the post-chemo crash. You didn’t have any time for me, so I had to play phone tag with your nurse and make a decision about my options without your input.

I realize now, John, that we were just never meant to be. I’ve decided to move on and find an oncologist who really listens to me. I want somebody who speaks from his heart without rehearsing. I want someone who has a genuine passion for his patients and isn’t afraid to show it. I think I’ve found him. It’s too late for us, but I hope that you’ll work on some of these issues before the next girl comes along. She deserves better.

Sincerely,

One Bad-Ass Cancer Babe

And Round #2 Goes To Taxol

80’S CANCER JAM OF THE DAY (this one goes out to Taxol):

First for the good news. So far, the things I’ve been doing to stave off the worst side effects of Taxol have been working. Icing my hands and feet during infusion seems to have kept the peripheral neuropathy at bay, despite my doctor nearly laughing in my face about it last week. Our conversation went something like this:

Highly Educated Doctor: So, any numbness or tingling to report in the fingers and toes?

Small, Unimportant Me: No, none yet. But you know I’ve been icing my hands and feet.

Highly Educated Doctor: (with a dismissive sneer) And you think that’s going to work? Ha Ha Ha.

Small, Pissed Off Me: I don’t really know, but I’ll be glad to try your alternative. Just tell me what that is so I can write it down.

Highly Educated Doctor: silence

Nuff said.

Photo Jul 28, 11 36 30 AM

In addition to the icing, I read a tip on several forums about keeping a nourishing base coat of polish on the nails of the fingers and toes for the duration of Taxol treatment. It seems to protect the nails from discoloration and splitting. I did try to find a polish without the usual set of carcinogens in it. Look in a a natural foods or makeup store. I just use clear polish, and the nails are in good shape (yep, that’s me).

And I also have very good news to report on the bone pain front. As you may remember, I likened my last encounter with Taxol chemotherapy to being tied up and worked over by Lilliputians. I felt like a 90 year-old woman all weekend. I read about the virtues of Claritin to help with this very unpleasant side effect, and it seems to have worked. I didn’t take it early enough last time because I had no idea it was coming. This time, I took a dose the morning of my Neulasta shot, the day after chemo. I am now 3 days out, and I’ve only felt the slightest tug here and there, very manageable.

headacheUnfortunately, this was me on Saturday. I woke up at about 3am with a splitting headache. I took a hot bath and managed to keep some ibuprofen down, only to find, when I woke up again at 6:30, that this was only the tip of the iceberg. It felt like my skull was literally going to explode. I tried to get more pain pills down, but then the nausea began. At 7am, I told my husband to call the doctor, which is huge for me. I am not a whiner, and I rarely ask for help. I have probably only taken half a dozen anti-nausea pills through this whole ordeal. The doctor must have been thrilled to hear from us bright and early on a Saturday, but he was very nice (different doctor, I might add). He told my husband to crush the anti-nausea pill and let it dissolve under my tongue. Then I was to take 2 ibuprofen and 2 Tylenol after 15 minutes. If that didn’t work, the doctor told my husband to take me to the Emergency Room to get a migraine injection. Yeah, right, because riding in the car in bright sunlight and then waiting for 6 hours to be seen would probably do the trick!

dog with headacheI kept the anti-nausea drug down but didn’t manage to swallow the pain pills without vomiting. So, I kept up the cycle of headache, vomiting, and occasional relief for several hours. Needless to say, I was in bed for the duration yesterday. I never saw our downstairs. I was able to eat exactly one half of a piece of toast and half a bowl of ramen noodle soup before bed last night.

I feel much better today, just tired and weak from being in bed all day and not eating or drinking much. My new mission is to either figure out how to prevent this scenario from ever happening again or to drop down my Taxol dosage. I really don’t want to do that because it might mean several more weeks of chemo, but being completely debilitated is not an option. Back to my research….I’ll keep you posted. You know I don’t give up that easily!

Lessons In Dying From Breast Cancer

CANCER JAM OF THE DAY: (not from the 80’s but haunting and beautiful- please listen anyway)

 

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Today was the kind of day that rocks you to your core and makes you question everything you think you know. Here you are, coping so well with cancer, taking it all in stride, laughing at your disease, and suddenly a sucker punch lands squarely in your gut and levels you. That happened to me today.

I went for my second round of Taxol this morning. I brought all the usual gear: tablet, bags of frozen vegetables for icing, powdered glutamine, and ginger ale.  We got to the doctor’s office at about 10am and checked in. They took me back almost immediately. They were behind today, so things were a little rushed. I saw the doctor first, and we discussed my blood counts, which were much better than last time. He mentioned again how he can’t believe that I still have hair. He’s grown on me. Another patient referred to him as “her little doughboy” and I think that fits him perfectly, being a kind of short, round cherubic fellow.

The next stop was the chemotherapy room, where the nurse accessed my port and started the Benadryl that makes me feel drunk. There was a plump older lady sitting next to me wearing a pink turban with delicate strands of white hair peeking out. She finished her chemo right after we sat down, and the nurse helped her into her wheelchair. Suddenly, there was a sound of water hitting the floor. I thought she had spilled her drink; then she said, “There it goes again” and hung her head in shame. My heart hurt for her when I realized that she had wet herself. The nurse gave her a blanket to put around her waist and waited for her to leave before cleaning up the mess.

Already slightly shaken up, I was very relieved not to have a roommate for the rest of my treatment. It wasn’t to be. About 20 minutes later, a couple who appeared to be in their 60’s entered the room. The man was tall and tan with salt and pepper hair, and he had a nice physique for an older man. He was pushing his wife in a wheelchair. She was a bony, frail looking woman with dark sunglasses and a silver wig, and she had very thin lips that wore no expression.

The woman stood slowly and carefully while her husband held her hands. She looked like a baby learning to walk, timid and unsteady on her feet. She finally made her way to the chemo chair and the nurse hooked up some IV fluids. I was mesmerized by her and found myself staring at her quite frequently. She moved in slow motion, as if she were heavily medicated. Her husband chatted with her about everyday things any couple might discuss. Kids coming to visit, neighbors on vacation, her missing cell phone. He ignored the fact that she could only give him very short labored answers. Her brain used to know the words she wanted to say, but now they were lost.

Her husband went out in the hall for a while, and she tried valiantly to stay awake. In her more lucid moments she talked to me. She told me that she and her husband had just celebrated their 50th wedding anniversary in March, and that they had liked each other 51% of the time. She joked that she was having a hard time picking out his second wife. .We also discussed her disease, of course. She told me that she had been diagnosed with breast cancer 17 years prior, probably very close to my age. She had been through chemo, radiation, Tamoxifen, and Femara. She was in remission for 10 years, and then it came back. She had 3 rounds of chemo in all, but the doctor had just recently ended any further treatment. Since I am struggling with how much more medical intervention I want, this did not make a good case for going ahead with radiation and drugs.

While I was lost in thought, her husband returned with a man I had met at my last chemo session, a chaplain. He obviously knew the woman well, and they greeted each other warmly. I was keeping it together until he pulled his chair right up to the woman, took her hand in his, and began to speak. “Gail, I understand that you’ve called in Hospice”. She nodded. “I want to tell you that you’ve fought the best fight I’ve ever seen, and if you’re tired, it’s ok for you to let go. Don’t worry about Ted. He’ll be fine; he has a lot of love around him. And don’t be afraid. I want you to remember these words ‘Trust in God. He’s always with you’.”

Before the chaplain got through the first sentence, I felt my throat tightening and the tears welling up behind my eyes. I couldn’t hold them back; they ran hot down my cheeks as I stared at the wall beside me, hoping that no one would see me crying. I didn’t want to ruin their moment. As I turned, I saw that everyone in the room was crying silently. I had just seen something fairly close to last rites. This made the Taxol allergic reaction I had witnessed on another occasion look like a walk in the park.

Soon I finished my treatment and got my things ready to leave. As I walked by the woman, I took her hand and just held it for a minute. I had no words, but I think she understood. It struck me that this must be what it looks like to die with grace and dignity, not feeling sorry for yourself…and with your sense of humor still intact despite it all.

 

Supplements That Have Let Me Live Well During Chemotherapy, Part 2

80’S CANCER JAM OF THE DAY:

As promised, I am going to outline the supplements that I have used specifically for chemotherapy and why I chose them. If you missed the first part of this post, you can catch up here. I am undergoing Adriamycin/Cytoxan/Taxol (ACT or ECT) chemotherapy for breast cancer, but I feel that these supplements would be helpful to anyone needing immune or antioxidant support during a period of chronic stress.

I can see your eyes getting big when I mention antioxidants. It is a very controversial topic when it comes to chemotherapy. Some doctors discourage the use of antioxidants for fear that they might lessen the effectiveness of drugs that work through oxidation. However, there are many scientific studies showing that antioxidants actually increase the effectiveness of chemotherapy drugs while reducing the side effects. Click here to take a look at an article that is really well done and explains how each drug category is affected by a specific antioxidant.

Just a note of caution here. Most of the following supplements are plants, so if you have strong allergies, proceed slowly. If you are allergic to ragweed or daisies, be aware that Echinacea and Astragalus are in this family. Also, if you take a large amount of prescription medication, it would be wise to do some research and see if there is any interference with these substances. If you feel like you want to talk to someone about it, your best bet would be an herbalist or a Naturopath. Your MD will probably look at you like a deer in the headlights.

Astragalus by jrdnzASTRAGALUS (photo by jrdnz)

Astragalus is a fantastic product for deep immune support. It inhibits tumor growth, increases natural killer cells, protects the kidneys and liver, and reduces fatigue. The product I take is from Gaia Herbs and is called Astragalus Supreme. This is from an organic farm right here in Asheville, but it is available online. I take 2 in the morning and 1 in the afternoon.

Echinacea Purpurea by Jonathan BillingerECHINACEA (photo by Jonathan Billinger)

Echinacea is another fantastic immune support product. It is helpful in preventing illness with decreased white blood cell counts and also instrumental in stimulating new cell production. This is the magical herb among Sioux Indian tribes both for healing and for health maintenance. I use a Mediherb product called Echinacea Premium. Once again, this company has a wonderful reputation for quality, and they grow all of their own herbs on a large organic farm. I alternate this product with Astragalus; when one runs out, I take the other, etc. I take 1 in the morning and 1 in the afternoon.

Milk Thistle by H ZellMILK THISTLE (photo by H Zell)

This is the ultimate in liver protection. And when your liver is being bombarded by chemo drugs, pain killers, steroids, and God knows what else, you need some protection. Milk thistle also protects the kidneys, lowers LDL cholesterol, and decreases intestinal damage. I read some research showing that silymarin, an ingredient in milk thistle, may have an estrogenic effect. But other research showed that it inhibited metastasis. I probably will discontinue this one after treatment, just to be safe. But for now, my liver is in tip top shape. I use a product called Liver Health, also by Gaia Herbs, 1 in the morning and 1 in the afternoon.

Turkey Tail Mushrooms by BuckeyeinTriadTURKEY TAIL MUSHROOM (photo by BuckeyeinTriad)

Also known as Trametes versicolor, the turkey tail is the “mack daddy” of mushrooms. As a matter of fact, it is used as standard of oncological care in Japan and China, where 9600 clinical randomized clinical trials have been done on disease-free and overall survival. Improved immune function seems to be a key in prevention of primary and secondary breast cancer, and medicinal mushrooms shine in this area. I use a product called Chemo/Rad Support by Dr. Kang Secret Formulas. You can Google this and order online. I like this fomula because it has other ingredients to help with the toxicity and side effects of chemo and radiation. It says to take 2-3 three times per day, but I can’t do this many pills. So I take 1 in the morning and one in the aftenoon. After treatment, I may move strictly to a mushroom extract.

So far, all of these supplements have been basic support formulas for any kind of stress/disease state. The following are more specific and I took these when I couldn’t stomach anything else in those days right after treatment.

ESSENTIAL FOR AC/EC:

COENZYME Q10- One of the most devastating side effects of AC/EC is cardiotoxicity. I am a runner, and this doesn’t work for me, so I got serious about protecting my heart. Adriamycin works by damaging DNA in cancer cells. Unfortunately, the mitochondria (or energy plants) in the cells of your heart are very susceptible to the inflammation that this creates. CoQ10 is an anti-oxidant that protects healthy tissues in your heart. Not only that, but COQ10 has been shown to stimulate the immune system, allowing it to “fight back” against cancer cells. I take 100mg twice per day.

ESSENTIAL FOR TAXOL:

L-GLUTAMINE- I know you’ve heard me talk about an L-glutamine cocktail to drink during infusion and for a few days after. In addition to that, I take L-glutamine capsules every day. They can help prevent destruction of the GI lining and peripheral neuropathy. As a bonus, they can enhance your mood, and who doesn’t need that right now? I take two 1,000mg capsules twice per day.

For infusion days: mix 15mg of L-glutamine powder in ginger ale or fruit water and start sipping about 15 mins prior to Taxol. I keep sipping throughout. That day and for the next 2-3 days, I have one of these cocktails twice per day.

pills

 

HOW CAN I TAKE ALL THESE?

 

I know this seems like a lot of pills, and I’m not gonna lie. It is. But you do get used to it, and you have to remember that it’s for a very good cause, you! I break it up so I’m taking pills 3x/day. It’s just a habit now. Write down everything that you choose to take, the dosage, and how many times per day you need to take it. Then build yourself a dosing schedule that works around breakfast, lunch and dinner. I find that it’s easier to remember to take pills if I’m sitting down to eat. The only exception is L-glutamine: try to take it on an empty stomach, at least in the morning.

I’ll be posting additions as I go along in treatment and beyond. I’d love to hear from you if you’ve found supplements that helped with chemo, radiation, or general health. Good luck!!