Healing so far so good (by Lyn)

November 22, 2011

I know I am not much of a blogger these days.  I even took my personal blog down while I work on a different one, but I am not finding the desire to work on it.  I kind of put myself out there to the world, cancer and personal warts and all, and am going through a phase of privacy.  I still want to share and support others, but I find that I have this deep need to be ‘normal’ for a short while.  I’ve been focusing on things like playdates and moms nights out, and going back to school for a different degree, etc.  I felt guilty for not keeping up with my cancer pals like I should, and then I remembered that no matter what, I will always belong to this community.  If we all lived in the same neighborhood, I guess my role would just change from a weekly meeting to dropping off food a couple times a month.

For an update, I’m 2.5 years out from my IBC diagnosis.  I had a double latissimus breast reconstruction in July and I had my last expansion last Monday.  The next step is healing and letting the radiated skin continue to change and heal, then we will do a fat injection.  Though I’m not a fan of surgery by now, I’m kind of looking forward to the removal of fat from my stomach and putting it in my boob.  Then it will be another 6 months after that I hear, when we will attempt the implant exchange.  I’m fine with taking the time to make sure it’s done as best as it can be.  I can see the visual changes in the tissue on my left side change weekly, and hopefully by the time the implants are in it will be supple enough to pass for a breast.  The good news is that I’m no longer calling it a ‘frankenboob’ which my plastic surgeon appreciates.  I’m taking pictures along the way and will publish a photo show at the end of it all.

My oncologist left the practice a while ago, and I finally met with a new one last week.  We’ll see how it goes, I know I don’t have to explain to you all how it is meeting a new doctor unfamiliar with you much less wondering if they are familiar with your disease.  Other than that, I’m good.  I find myself relieved the older my children get, my 6 year old son is in first grade and my daughter will be 5 on Valentines day.  Now that there is a small hope they will remember me if I die tomorrow, I relax a little.  Anyone play bunco?  I played that for the first time last month and it was fun!  See, that’s the type of thinking my brain goes to these days, I think I am serioused out.  the death of my mom from cancer followed by my own diagnosis a year later at age 30 followed by my marriage falling apart, I think I’m done.  I want to spout something wise, but I end up thinking ‘hey let’s make cookies and watch a good movie’ instead lol.  It’s a phase I know, but as someone who’s gone through a LOT of phases, I can’t say it’s any better or worse than a cancer focused one, it’s just different.  I wish you all lived closer so we could have a huge cancer warriors only bunco night complete with cookie exchange!  Then I could combine it all and feel somewhat normal again:)

An apple a day keeps cancer away? What to eat when you have cancer.

October 5, 2011

roasted Brussels sprouts with balsamic vinegar - yum!

Cancer bursts into our lives ripping away any illusion of  control we though we had in this world.  Suddenly, we find ourselves full of questions and vulnerable to all sorts of “curative” advice – we are willing to do anything to live.  From prayers to potions to Pilates  to what’s on our plates, we plead, Will this be what heals me?”   

Make no mistake about it, our friends and family love us and every healing suggestion they bring is brought with love.  They feel just as powerless against our cancer as we do.  How simple it would be if we could just find the right magic [sprouted, organic] bean so that our cancer would be cured.  Unfortunately, that’s not how it works.  While there is no cure for cancer, there are things we can do to fight this killer disease.  For many of us, surgery, chemotherapy and radiation are the first weapons of choice.  Prescription drugs soon follow.  Meanwhile, outside the walls of traditional medicine, we start to dabble with remedies of our own.  Food and supplements serve as powerful weapons in our “Kill Cancer” arsenal.

Please don’t get me wrong – I’m not a member of the emailing forwarding “You got cancer from drinking out of plastic water bottles” crowd.  I’m also not one to spend $99.95 (plus shipping and handling) on exotic herbal pills offered on late night t.v. infomercials. More likely than not, you can find me sipping a Diet Pepsi or sneaking a cookie instead of juicing a beet/broccoli smoothie. However, I do live in one of the health food Meccas of the United States and did consult with a local dietician post- treatment to get some diet advice. She put together a list of the some of the best anti-cancer foods.  I’m not saying if you only eat these things, you will cure your cancer. And I’m not saying that if you don’t eat these things, your cancer will spread.  What I am willing to say is that these foods are good for you and some have powerful healing properties.  Bottom line?  They can’t hurt and some of these things actually taste good too!

Food ideas from Nutri-Physique, Pam Vagnieres, Boulder, Colorado

  1. Cruciferous vegetables (broccoli, brocco-sprouts, watercress, cauliflower, collards, Brussel sprouts, kale, turnips, radish, arugla, bok chok, rutabga, cabbage…)
  2. Green Tea (Brassica and organic powdered green, Tea Tech)
  3. Berries
  4. Citrus (use the zest)
  5. Asian Mushrooms (shiitake, maitake….)
  6. Flax seeds (fresh ground organic)
  7. Nuts and Seeds (especially Brazil nuts, organic and raw, no peanuts)
  8. Garlic (crushed and raw)
  9. Dark Leafy Greens (kale, collard, mustard greens…)
  10. Legumes
  11. Pomegranates
  12. Dark chocolate (oh yeah! 70% and greater)
  13. Miso soup (yum!)
  14. Wild fish, organic grass-fed lean beef, lamb or buffalo, organic eggs and poultry
  15. Organic veggies (lightly steamed or juiced – especially brassicas, beets and artichokes)
  16. Sea vegetables
  17. Green drinks
  18. Whey protein powders (only processed at low temp)
  19. Pineapple stem
  20. Tomatoes cooked in olive oil
  21. Umeboshi and kuzu 
  22. Organic raw Kombucha tea
  23. Olive, avocado or coconut oil (and coconut milk)
  24. Spices (garlic, lemon grass, cumin, ginger, cayenne, oregano, tumeric, citrus peels, cilantro, parsley, rosemary, black peper)
  25. No sugar of any form (you may have stevia or xylitol)

Pam concludes her list with, “Don’t forget to get some fresh air, sunshine, walk, hike, swim, bike, and lift a few light weights to stay strong.  Most importantly, do whatever it takes to lift your heart and spirits and surround yourself with love!”

As a mother with four years under my belt living with Stage 3c breast cancer, I’ll add in my own words, “Do whatever it takes to lift your heart and spirits and surround yourself with love even if it means having the occasional slice of birthday cake or celebratory glass of champagne.”  Did I say champagne?  I meant Kombucha tea! 😉 Here’s to living well – whether we have cancer or not.

Too Moody For This

June 4, 2011

Last night my 12-year-old daughter got in trouble with her father and he just barely raised his voice at her.  Her response to this was to look at him and say, do not yell at me.  I wasn’t sure if my husband’s head was going to explode or not…it was touch and go there for a while.  My reaction, on the other hand, was to cry.  This has been happening more and more often lately.  I went to the grocery store and my husband told me I bought the wrong kind of cheese – I could feel my chin quivering and the tears forming in my eyes.

I’m turning 42 this month.  I know what menopause feels like, because I had the honor of going through it when I went through chemo.  Not only is it my birthday this month, but it’s also my 2 year cancer free anniversary – which means it’s been two years since I’ve had a hot flash or a major mood swing.  So, ok, I’m going through menopause, right?  Am I just starting menopause at the ripe old age of 42?  Is this a carry over from chemo?  Is it cancer?  Is it cancer? Is it cancer?  I get so tired of thinking that. 

 I see my oncologist every 4 months now.  It’s been 5 months since my last appointment.  Putting off going to the doctor doesn’t change what the outcome is going to be.  Intellectually I know this.  When they found the lump in my breast, they told me to trust them, because it was probably nothing.  Boy, were they wrong that time.  If I hear that again this time, I think my head will explode.

Five Years…by mary beth volpini

April 28, 2011

Five years ago this morning I heard those dreadful words… “You have Breast Cancer”. My world stopped and I am sure I was walking around with what I call the “deer in the headlights” look for quite a while. I gathered all of the information I could… I made some hard decisions….I did what the doctors told me to do. I have reached some of the milestones that my doctors said were important… One year of survivorship, two years of survivorship and now five years of survivorship. Is it a guarantee that my cancer will not come back? NO …no one can give those guarantees, but today I am not going to think about that. I am going to celebrate that I have reached this milestone.

On Monday, I went in for my yearly breast MRI. I tried to cheat and make the appointment right after that with my breast surgeon… hoping that she would be able to read the results right then. She did try, but not all of the information was available. But she is a woman too and she knows how we worry. She did her physical exam and took a preliminary look at the MRI results and said she was “happy“ . Yesterday I received a message from her office, it was “good news, call us back“. The nurse said “Dr. Police is happy we will see you in a year“…well if Dr. Police is happy then mb is happy!

So I will raise my glass… or cookie in my case and take a bite out of life for as long as I can!

cross-posted at marybethvolpini

A milestone by Lyn

July 9, 2010

Well  I made it.  I finished my year of Herceptin last week.  I knew the day would come, but I almost can’t believe it.  I see my oncologist again in 3 months, and I admit I am looking forward to the break.  Even better, I am getting my port out in 2 weeks.  I can’t wait for that either.  As for what is next, they tell me I am cancer free, but you all know how that goes, and how fearful it is to worry about a recurrance.  But I am going to be positive, and try to be a bit more spontaneous in the coming year.  I have been tied down to doctor appointments and check ups and physical therapy and recovering, that it is all I have been able to think about, but now I am going to attempt thinking past IBC and the possible recurrance. 

Another big decision, dh and I decided recently to put my reconstruction on hold until my daughter is in kindergarten.  She is 3, so about 2 years.  My skin is so damaged from twice a day radiation that implants are not an option at this time anyway, so the only way to be reconstructed is with the TRAM or DIEP and that is such a huge surgery and recovery.  It’s not sensible with 2 very young children and noone to help out while I am recovering.  Part of me is nervous about the decision, but even more I am relieved because I don’t think I am up for such a large surgery so soon after the last one. 

If you are Her-2 positive, ask your doctors about joining the Neratinib Trial.  It was presented to me, and I have decided not to do it.  But I think it will be very beneficial and help us combat cancer.  My decision was a personal one, but I fully support the trial and believe it will help extend our lives even further.


May 2, 2010

(by Susan, diagnosed with a recurrence of inflammatory or infiltrating breast cancer and locoregional metastasis in March/April 2010.)

I admit, I’m struggling.

I suppose it’s not uncommon for a person diagnosed with a third cancer in three years or a metastasis of a previous cancer to be anxious, quiet, and withdrawn.

I know it’s not uncommon for us to withdraw into ourselves or close family, to concentrate on the logistics of cancer diagnosis, the testing, the treatments, the side effects, the complications, the procedures, the planning appointments, the specialists, and the treatments to come. That’s normal, right?

But I’ve been surprised a bit at how this all has gone down. I am relying more on my nearest and dearest, setting up playdates nearly every day (even though many of them fall through because of illness, mine, theirs, or kids), cleaning the house obsessively (because God forbid it be out of order should someone drop by; they might suspect I’m struggling), spring cleaning and changing out the winter clothes for summer (labeling bins so that the change back for fall is easy for whoever does the chore, since I don’t know how sick I’ll be then), setting up summer activities to distract and engage the children, offering to watch others’ kids when possible (since I’ll need them to watch mine), joining a church again at last (I need to have a family of faith, since I was so disappointed by the brush-off that I got from my pastor last time I was in treatment, homebound, worried, and desperate to understand), paying the bills (and setting them up for automatic payment), calling contractors (to paint, to rewire, to fix the gutters, things I’ve put off for months or years), giving away outgrown toys and reorganizing the lego and playmobil sets that march across the playroom. Mundane stuff, right?

Isn’t this the time that I feel so blessed to have caught the cancer early enough for simple treatment? Before it went to my bones or brain?

Isn’t this the time that I spend all day snuggling my children? (Actually, I do. I spend all day snuggling and reading to my children. And then when they go to school or play independently I clean, so I can snuggle them more when they come back. This is not the way I used to do it. I used to work when they were at school, and teach them to clean with me (among many, many other things) when they were at home. But I can’t concentrate on work and do a good job right now. Luckily, the laundry doesn’t require much concentration. I have control over the laundry. I don’t have control over the cancer.)

Isn’t this the time that I reflect, here on the blog, and share these thoughts with you? It is, isn’t it? But why have I not been able to write real, intimate thoughts like this with you lately? Why am I so quiet? Why can’t I sit here and tell you, once again, like I pledged in 2007, to tell you what it’s really like to be a cancer patient and survivor? Am I ashamed to tell you that this time it’s not as easy? That some days, I don’t know how we’ll get through it? That I rage against the cancer in private? That I sink into my bed, seeking comfort? That I still have no answers for why this all is happening to me, and I search my past, wondering if it was something in the physics building at college or graduate school, wondering if it was the work I did in the clean room, marshalling van der waals forces to move nanoparticles from needle to needle, or those years with the mass spectrometer, where I was the only one to consistently wear my radiation monitor, even though it showed only low levels? That I wonder if the cancer was caused by the mercury spill that I worked next to for four days, because I didn’t know it was there and the technician didn’t want to be bothered with cleaning it up? That maybe if I had become a writer, or a microbiologist, or something on the other side of campus I wouldn’t be sick today? That then I feel ashamed for questioning, because surely all the research labs I worked in and was surrounded by followed standard radiation protocols and were safe for students and researchers? That I know that I can’t blame myself for contracting inflammatory breast cancer, Paget’s, and infiltrating breast cancer (if that’s even what it is), but yet, some days, I still do?

Isn’t this the time that I feel grateful?

I want to feel grateful. I want to feel that grace that came over me last time when I realized how close a call I had. I want to write words of hope and strength and coping here, so that others may see that the fight is not hopeless and dismal. I want to reach back to so many who have reached out, on this blog, on their own blogs, on twitter, and in person, dropping by or taking me out, helping me laugh again.

I love it. I love you. I do. And I appreciate it so much more than I have been able to say.

I haven’t been able to say it. Truthfully, I’m struggling. I’m not sleeping at night (at all, some nights, four in the last three weeks, and only a few hours most nights). I’m not eating, but I’ve gained 14 pounds since my medication was switched in February. I’ve found out only this week that two additional side effects of the aromasin are weight gain and the inability to lose weight. Nice. Thanks a lot, aromasin. No wonder my clothes don’t fit and I feel so crappy helping the kids scale the pirate ship or scrambling into the tunnel at the nature center.

I’m worried about my kids and how they’re coping. I’m helicopter parenting them at school, I know, but I want them to be in a place where there is love and friendship, not exclusion, pre-bullying, and fighting games. I’ve seen the effects of these things recently, and it makes me sick. I’m working so hard to provide them with supportive, positive playdates to counteract that time when they are essentially unsupervised on the playground at school. I’m looking into support for families now, before it gets worse, and I’m calling on resources from the American Cancer Society, The Wellness Community, CancerCare for Kids, and KidsKonnected to help me find out where to go and what to do to help my kids weather the stormy days as I adjust to the new treatment and recover from the surgery and its complications (the seroma is quite large, needing draining several times a week, and the draining has introduced an infection into the wound, which keeps me awake all night now with alternating hot flashes and chills, in two to ten minute cycles, for hours). I’m looking for other resources now, finally able to reach out and ask for help, and I want most of all help for my children, to help them feel like regular kids, and to give them a place where they can talk if they need to. I am looking. I don’t have a link for that. I want to find a place, though, and I am finally strong enough to reach out and ask. Have you seen one? Do you know a place on the East Coast where kids with cancer can relax and talk to each other or a professional about their fears?

I am realizing that I’m withdrawn, because I’m afraid. I make plans, but I’m not sure whether I’m planning to enjoy these things with my children, or providing them a place to go when I’m exhausted and in pain from the radiation that is to come. I tidy up the paperwork, the finances, the house, old contracts, loose ends, in hopes of regaining control over something concrete in this life. I realize now that it’s probably because the thing that I want to control the most — cancer — is not really up to me anymore. I have a treatment plan, with the endorsement of the oncology experts at Georgetown and Sloan-Kettering, and now I must trust it and move forward with hope and confidence.

I want to be strong. I want to accept this with grace. I want to just take it in stride and continue on with my blogs, my projects, my playdates, and my work. One day soon I will. But for now, I struggle. I admit it.

I admit it.

Crossposted on Toddler Planet.

The Iceburg of Cancer

May 1, 2010

By Lorri Steer

Monday our local paper ran a cover story about a play that the local community college is presenting this week. It’s called “At Wit’s Start” and was written by a young doctor who found herself battling stage 4 ovarian cancer. It’s based on her Pulitzer Prize winning book. I can’t wait to see the show but I had issue with how part of the article was portrayed. My letter follows.

This is for all the women who are currently going through chemo and dealing with hair loss. I know your pain.

Thank you for your cover article on the upcoming Front Range Community College play “At Wit’s Start.” As a young women living with advanced stage cancer myself, I very much look forward to attending the show.

While Mr. Rochat’s article is well written, I take issue with one point. The caption on the “If You Go” photo reads: “Stephanie Roscoe has to shave her head every other day for the role of Dr. Vivien Wit.” (italics mine.) She chooses to shave her hair to add an authentic feel to character. A sacrifice for art? Perhaps. The same unwilling “has to” hair loss chemotherapy patients endure? Not at all.

I’m bothered by the implication that there is any kind of likeness in choosing to shave one’s head for a play and loosing one’s hair (including eyebrows, eyelashes and all bodily hair) in a medical gamble to save one’s life from a killer disease.

Please don’t draw parallels between the baldness a cancer patient endures and the shaved head of an actress. Cancer’s suffering runs deep and a bald head is just the tip of the ice burg.