End-O-Chemo Girlfriend Party SHOOT

November 16, 2013 Two days prior to surgery I gathered together some of the girlfriends who had supported me during 4 months of chemo and recovery.  My friend Ron Gladney, the manager at The Benson Hotel, upgraded us to The Presidential Suite where I piled all the gals together on the same bed where Obama slept for a group photo full of red lipstick.  Photos by Paige Stoyer as part of The Real Thing series.

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Group. Back row, Left: Sarah Paige, Wendy Weaver, Lily Hutchins, Whitney Pillsbury. 3rd row Left Janis Picker, Caroline Petrich, Claire Bard, Leisl Stientjes. 2nd row Lisa Helderop, Kimberli Ransom, Paige Stoyer, Front row left, Katy Nida, Becca Blevins

To celebrate the end of chemotherapy and prepare myself for surgery, I decided to throw a little party and invite only a small group of girlfriends. Please don’t be hurt if I missed you or you are of the boy variety.  I know I missed some.   I wanted to keep it small and I was still VERY tired from chemo.  While there were so many friends and family members who sent well wishes or offered support, all of which were greatly appreciated, there were some that really stood out.  Those were the ones who showed up at my house over and over again.  They came over, kept me company and did the work even when I couldn’t articulate what I needed, when or how.  Read more on what they did and what it meant at the end of the post.

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The photos below are images of just getting ready for the party.  Simple, and yet I was still very fatigued from the chemo.  This was my first real outing after a month of recovery.  Mostly hairless and tired, my original breasts out on the town for their final party.  My little sister, Katy, in my blond wig I would throw off  during the evening due to the hot flashes that still plague me every hour.  My eye liner painted on thick before my fake eye lashes, which I never cared enough to learn how to apply myself, arrived with Lily, who’s a makeup artist.  The 8 bangles that hung from my wrist for each week of chemo awaiting the new addition of rhinestone ones for surgery.  My hands on my breasts as I realize I will come out of surgery without feeling in them.

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Benson Hotel, Cancer Post Chemo party preparation

 

Women, yes women.  I found it was primarily the women in my life, although not exclusively, who helped me the most to get through chemo.  Some were fairly new to my life and I was as surprised by that as I was by the absence of a few people I thought would be there, but could not for whatever reason. I know, I’m lucky, I have a lot of support. However, the 4 months of chemotherapy and recovery was quite a lonely time despite this.  Every other week, once my mom or older sister would go home, I was still ill and then alone in my house.  It was hard to reach out to others and articulate what I needed even if they asked.  That’s why this group of women, as well as a few not pictured here, were so outstanding, each in their own ways.  I also kept the big stack of cards, Facebook messages and phone messages, even those relayed via family members, on the coffee table. They were wonderful and helpful, I loved looking at them, but when I was in the fog of chemo side effects it was people showing up in person and quietly staying with me that really made a difference. While others may need space when they are ill, I found I needed people with me, not just for short visits, but for hours of quiet time.  I’m sure I wasn’t good at expressing that however.

A few examples of what these friends did that made such a difference   Some women came to medical or chemo appointments, Janis Picker, Claire Bard, sister Katy Nida, and others not pictured, Amy Bradshaw, Linda Alper, birthmother Pat Nida and sister Paula Johnson and mother Helen Brown.  I needed someone there to help me process and remember. There were so many doctors and so many details!  Some like Leisl Stientjes and Sarah Sharp spent the night, picked up prescriptions, ran errands, washed dishes, vacuumed, gave hugs and cried with me.  Some of the women, like Caroline Petrich, made soup every single week.  Simple, consistent, helpful.  Some, like Wendy Weaver and Whitney Pillsbury, brought delicious food and sent messages nearly every week.  Some just sat with me while I ate, making sure I took my medication.  Far too many meds for me to manage on my own some days.  Paige Stoyer not only documented chemo and doctor appointments with her photography, but listened and helped me process what I was hearing.  Lisa Helderop reminded me “it will get better,” which were words she had repeated often at another difficult time in my life.  This helped me focus on the fact that all things change and indeed, this time, too, would get better.  Neighbor April Hansen shared tears and groceries. Becca Blevins rented space in my studio to help cover a bit of my overhead, photographed the Octopus shoot and quickly became a close friend. Four of my oldest and closest girlfriends, Melissa Shields, Mo Sami, Helena Echberg and Anne-Marie Notaras live in other cities.  They called and came to stay with me when and if they could and this mattered tremendously.  My home was often filled with flowers from Lily Hutchins of Flowers in Flight sometimes via our mutual business friend, John Middleton, who once left a bouquet that read, “Love you.  Fuck cancer,” and came to my house for the day once to “fix shit,” like painting my fence.   

What we learned.  During that evening, Becca asked everyone to sit in a large circle.  Each woman then made a toast to me and some expressed what being there for someone with cancer meant to them.  Some of them were surprised to be included in this small group, as if what they had done was not enough.  However, what they did seemed huge to me.  Some articulated that it was an honor to be let into the process of me going through cancer.  I had no idea.  They said it made them see that they too could do it if they got breast cancer.  Others confessed early doubt as to whether or not I needed them, as Facebook made it appear I had it all together.  I certainly did need them.  I’m so glad they reached out despite their own fears.  There were fears about getting cancer themselves, not from me of course, but how just being around someone who has cancer makes us think about our own vulnerability. Many of the women have had friends or relatives die from cancer.  What if I died?  Would it be that much more painful to be close to someone then?  I have that in my own family and wondered how I would be if any of these women had cancer.  They expressed fears that they didn’t know the right things to say and were uncomfortable at times.  I said I felt the same way and didn’t know what I would have said to them either.  “We all are stumbling around trying to hold one another up,” as my grandmother once said.  Yet they showed up again and again.  They put aside some of their own needs, busy lives, families and extended their time and love to make room to care for me in their own ways. They did not take it personally when I did not respond or was too fuzzy with chemo brain or fatigue to tell them what I needed.  They gave me the benefit of the doubt and did what they thought would help.  They, like so many others who showed up, did help and I am grateful.

I realized that night that I have learned to receive love and help more openly now.  To let others make a contribution not only because it helped me but because it helped them. They wanted to support me in my cancer journey, weren’t always sure how, but tried anyway.  They taught me.  The next time someone I love, or want to love, has cancer, I hope I show up and keep showing up for them just like these women have for me.

 

REQUEST:   If any of the women who were there that night want to make comments on your own experience of being there for me during cancer I would love that.  Or others just reading who might want to share their thoughts. This seems like a topic that could really benefit readers supporting their friends and family who are going through chemo.

 

Week 13 – Answers to my earlier questions

It’s week 13, treatment 7, day 6.  I wanted to go back and try to answer some of the bigger questions I had early on.  I have 1 treatment and 3 weeks of chemo left.  I can see the end, yet the pain keeps me shortsighted.  Perspective shifts with pain I find.  It’s a gorgeous day, however, and on this Sunday I got to both the gym and the park on my bike.  If I don’t stop or look at my reflection I can almost forget I have cancer.  I feel very fatigued but somehow strong at the same time.

This is what I wrote originally.  See Week 6 – Chemotherapy side effects.  “The questions I had, and some I still have, that others may share:  What will chemo feel like?  What are the side effects?  Can I still work?  Will I be throwing up all the time?  Will I really lose my hair and when?  What is “chemo-brain”?  Can I have sex?  Will I or (insert possibility of new boyfriend here) even want to?  Will I have ‘moon face’?  What happens to my skin and nails? Will my old fibromyalgia re-emerge? Will the chemo kill me?  Will I wish I were dead instead of having it? Will it hurt?  What else might happen? Will I need help?  How much? Who will be there with me and who will not?”

Answers:

“What will chemo feel like?  It feels like a bomb hit me some days. It feels like something exploded in my body and can’t get out at times.  It alters both mind and body with symptoms and fog.  Other days it just feels like fatigue – operating my body at quarter energy.  My spirit and clear mind come back during these days and I live life intensely.  I’ve written much on chemo already so I’ll stop here.

What are the side effects?  You can read the original post and updates for more gory details but basically I’m on the 16 week ACT program for breast cancer.  I received treatment every two weeks.  The side effects during the first 4 treatments of my A/C where different than they are now during the last 4 treatments of T.  I can’t say which I prefer.  Maybe the latter.  They both suck.  I advise avoiding them completely, if you can.  With the first 4 treatments, the worst side effects were nausea, fatigue, some pain, chemo brain, mouth sores, hair loss…   In that order of severity.  For these past three T treatments the worst side effects are bone pain all over my body, hot flashes, fatigue and nausea.  I hear more neuropathy in my hands and feet, as well as excessive fatigue, will increase with this third treatment.  Yippee.

Can I still work?  Not really.  Very part time.  I still have to work some, 1) for my sanity and 2) because I am self-employed and my sole support.  No sick time, no disability insurance, no good to get sick my friend.  I have a mortgage and studio to pay for in addition to all the medical bills.  At first I tried to work most of the second week of chemo treatment but was completely overwhelmed by managing the details when I still had bad chemo brain.  After crying with four clients in a row I had to stop.  I now take one or two clients at the end of each two week treatment and focus all my energy on them and hope they buy a lot.  That’s it.  I don’t pressure myself to do more and I let it be.  Whatever income I create will be enough until I can work PT or FT again.  Now is not the time to work, although I feel the financial pressure.  I’m living on savings, and have rented a room in my home as well as part of my studio.  I’ll miss the holiday season, my busiest time of the year, which usually gets me though the winter.  I’ll ask those clients to come after the New Year when the surgery is complete and I just have radiation to manage.  Post holiday photographs will be the new thing this year.  Spread the word, it’s all the rage.

Will I be throwing up all the time?  No.  Anti-nausea drugs are amazing.  I’ve felt nauseous most of the time, but haven’t actually thrown up.  It is better for me now during the T treatments than with the AC.  This was one very welcome discovery!

Will I really lose my hair and when?  Yep.  Two weeks after my first treatment, like clockwork.  My head, legs, underarms and yes, pubic, hair all gone.  My eyebrows and lashes are barely holding on but I’ve heard that may be short lived with the T drug.  Damn it, I thought I was going to get away with them!  I “leak” now whenever the wind blows as there are so few lashes to stop the tears from overflowing.  I’m happy to have had them as long as I have.  Eyelashes are lovely.  They will grow back quickly, however.  I’m still pissed off that my brows are thinning.  If they go I’ll start a riot!  The bright side – I’m happy not to have to shave my legs and pits!  My head grows stubble, which I shave every two weeks because I like the feeling.  Nice!  I hear it starts growing in as soon as chemo ends and grows back at about ½ inch per month.  It’s going to be a while until it’s any sort of style, but I’m glad I wore it short for a week and liked how that looked. Can’t wait to get that sassy bob grown out!

What is chemo-brain?  This is still hard to describe.  It’s a fog.  It’s like my mind working in slow motion.  I can see the pieces, but I can’t put them together quickly.  It’s like slogging through mud to get to the answer.  I’ve found myself asking people to talk more slowly on the really bad days.  I make lists to remember things and then forget to read the lists.  Fortunately, this is not a side effect that is bad every day.  It’s usually just the first few days after treatment and then it lessens.  It is much less of a problem with the T portion of my treatment these last 3 sessions.  I’m sharper now but dulled by more pain.

 

Can I have sex?  Will I or (insert possibility of new boyfriend here) even want to?   The one you’ve been waiting for.  Well, the answer is I don’t really know. (Damn it! And only 3 weeks left to find out…) The 24-hour rendezvous man fell away the same week as my hair.  Pity, I liked him.  To my great surprise, others have emerged and I’ve even had 3 interesting dates with someone and put off the attention of others.  Who meets people to date during chemo?!  That’s nuts.  I even shocked myself.  It’s been good to rally my energy on a good day and enjoy company and dinner once in a while.  My heart and my mind are slow to focus on a new romantic love and prospective relationship right now, however.  Sex, for me, is connected to those things (usually, at least), and so while I’m sure the answer would have been ‘yes’ in the context of a relationship (the interest is still there on the good days), the truth is I just don’t know.  Nothing rallies the mind and body like romance and I love the prospect.  I’m so glad chemo is almost over!!

Will I have ‘moon face’?  No.  As far as I know this is caused by higher doses of steroid than what I was given.

What’s happens to my skin and nails?  I heard horror stories before.  My skin has become very dry, however, virgin coconut has been my favorite solution and cured the problem.  I slather it on after every shower and then wear a hula skirt.  I also really like CV Skinlabs and Violets are Blue products that are made specifically for cancer patients.  Very excited about both of them.  Overall my skin has done very well with a combination of these products and coconut oil.  Radiation will be it’s own story.  My sister says she has horse utter balm for me from the vet.  My nails have been fine (and yes, I’ve had them done and they are sexy).

Will my old fibromyalgia re-emerge?  No, thank god!  However, the pain from the Nulasta shot that stimulates bone marrow does cause me pain that is as intense and does migrate like fibromyalgia.  It’s bad and it, like fibromyalgia, is very difficult to tolerate.  While the doctors ask me if I ‘ache,’ this is definitely pain not an ache.  Maybe I have a different level of pain than most. Perhaps that is from having some form of fibromyalgia and nuerological pain issues still underlying everything.  I do not usually experience fibromyalgia pain or symptoms now due to new medication.  (Don’t even get me started on the idiotic argument that fibromyalgia may not be real.  Anyone who has lived with it will tell you exactly where to put that ill-informed opinion.  That can be filed with cancer cure diets consisting of pot and cantaloupe.  I received both.)  My chemo pain feels as bad as fibromyalgia, or the surprise may be that fibromyalgia feels as bad as chemo.  The good news is that the pain does lessen and almost goes away before the subsequent treatment.  I can deal with this.  The drugs I’ve tried do take the edge off, but do not take the pain away.  The pain has gotten worse with each treatment and this most recent #7 treatment has been very painful.  During the first part of chemo I thought that overall it was still easier than 7 years of intense fibromyalgia.  Now that the pain has started I find the two very similar, except I know it will go away once chemo ends, which makes chemo bearable.

Will the chemo kill me?  Will I wish I were dead instead of having it?   Although some days suck, chemo will not kill me, and I’m happy to be alive.  My blood work is being managed and, although I am vulnerable, I am not in danger of the side effects of chemo taking me out.  I can, however, imagine why people chose NOT to continue chemo sometimes.  It’s overwhelming, exhausting and feels very out of control.  Everyone in chemo makes their own choice.  Many people are in chemo not to “cure cancer,” but to manage terminal cancer.  I have a new understanding of what it means to choose not to have chemo.  Where the side effects make the quality of life worse than simply living without it.   I can imagine a time I would not want more.  For now, I’m happy to do it and finish.  It’s much better than the alternative, and I am fortunately enough to have the option.

Will it hurt?  What else might happen?  Yes, it hurts me, but not all of it.  Receiving chemo itself does not hurt.  Some of the side effects and the drug Nulasta do hurt.  Almost anything else might happen and does. I’ve seen others experience a wide variety of complications, but have been fortunate to have followed a fairly predictable path.

Will I need help?  How much? Yes, a lot some days.  None other days.  I need different amounts of help at different moments.  It’s so hard to predict.  From making food to making sure I take my millions of pills at specific hours.  When the side effects set in I want to do neither.  I like the comfort of having people around, and the company friends and family provide.

Who will be there with me and who will not?

To be written about later.

 

 

 

 

 

 

 

 

 

 

 

 

 

Week 9, Medical Update & drugs

Medical Update

Week 9,  recovery week after 5th chemo.

I feel tired.  Tired and in pain this past week.  I’ve started my new chemo drug Taxol. This will be the drug of choice for the remaining 3 treatments.  The symptoms are different, maybe somewhat better, maybe not.  I have pain throughout my body now.  It’s more than an ache and less than terrible.  It feels just like fibromyalgia pain did.  All over and intense at time. The nausea is less than with the A/C drugs, but still enough to need meds. The big bonus is not having to take steroid pills for 3-5 days after the treatment. They give it to me in the cocktail but it didn’t make me totally crazy this time. Semi-crazy.  Lots of tears.  Lot of fatigue.  Lots of pain.  Unfortunately, the first level of treatment for pain, beyond over the counter drugs that do not help, are steroids.  No! The mouth sores that kept me from eating or drinking regularly last week are healing after antibiotics.  They caused the worse pain I’ve had so far.  It hurt to talk, drink water and forget eating without numbing my entire mouth.  I’m on day 7 now and have not been able to work more than a couple of hours.  No energy, no stability (I fell down the stairs last night, but did not get hurt).  I’m having my suddenly-low blood pressure checked out tomorrow and have more IV fluids scheduled.  That may be another new piece of my treatment. Twice a week it’s back to the clinic for 2 hours of fluids just to stay hydrated so I can recovery in time for the next treatment.  Not the most fun I’ve had…   Not the worst time I’ve had – but close.

The photo below is of one week’s worth of medication and supplements.  I feel like I eat in order to take these pills every few hours.  The boxes do not include the 2 additional nausea medications I take every 6 and 8 hours, nor the various powders and potions from the naturopath that I mix into water.  I’m hoping to cut back the nausea medication with this new round of Taxol.  So far, it’s better than the A/C treatments!  Good news.

FYI- You may have your own opinion on taking so many pills and what you would do instead.   That’s great.  I’m not interested in ranting emails about miracle cures and diets, however. I’ll write a very funny post on the crazy, although well-intended, things strangers have sent me in the name of ‘curing my cancer.”  People who say, “If you’re serious about curing your cancer….”  as if I’m not already.  This photo is simply to show you what I’m actually doing.  It’s my choice to follow both my MD and ND recommendations in addition to a specific diet and exercise program.  I have faith they will work, but as with any cancer treatment, no one really knows.  There is no cure for breast cancer.  There is remission.  There is not seeing cancer cells too small to detect and calling it cured.  There is living the rest of your life in remission, living with breast cancer, and there is death from breast cancer.   One of these will be my path.  In the meantime, I do what I think is best and learn as I go.

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