Week 14 Update after “The Real Thing” Shoot

Response to Facebook post regarding “The Real Thing” SHOOT.

First, thank you for all the comments and calls. They helped! Today I woke up with very little pain & more energy. I’ve put on my red lipstick and 7 bracelets. I’m meeting with the artists from#FindingBeautyInCancer today and tomorrow to put together the crowdsourcing/fundraising campaign to publish a book and print a gallery show next year. The bad days pass, I’ll try to remember this next week when chemo tries to kick my ass again.

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 12 – Medical Update

Week 12 medical update  I’m now more than half way through chemo and have had two treatments with the T part of the treatment Taxol.  My side effects have changed. While I still have the chemo brain and fatigue, I do not have as much nausea.  I require only one of the three nausea medications I did during the AC part. I’m no longer losing weight.  Note: contrary to popular belief, most people actually gain weight during ACT as the metabolism slows down like in menopause. I no longer have blurred vision and mouth sores.  The mouth sores became so bad at the end of the 4th AC treatment I needed antibiotics.  I have three new side effects with this drug.  Pain, hot flashes, neuropathy (numbness in hands and feet).   The pain is centered in my long bones, arms and legs, for the first several days, then lingers in my hands, hips and knees toward the end of the two week cycles.  I have pain medication that takes the edge off, but does not take it away. Sleeping is a problem due to the pain the first 5-7 nights.  Hot flashes started on the 2nd Taxol treatment and were every half hour for the first day.  A sneak peak at menopause!  I was happy being blissfully ignorant, thank you.  The neuropathy just started last night (week 12, 9 days into my 2nd Taxol treatment) when suddenly my toes began to tingle.  I’m worried about my fingers, as they happen to push a shutter button and play guitar strings and piano keys.  For some people it’s temporary and others permanent.  I meet with my oncologist next Tuesday before my 7th round of chemo and will ask her.  We’ll also discuss what’s next as I’m ALMOST DONE WITH CHEMO!!!  Just 2 treatments and 4.5 weeks left now. I’ll have 4 weeks of recovery then bilateral mastectomy surgery and reconstruction around November 18th.  Setting the surgery date has been more upsetting to me than I had imagined. My fears are around the physical pain not the emotional aspects.  Perhaps that will come later.  I want the cancer removed from my body now, but I’m afraid of the pain and fact that I don’t respond well to any type of pain medication.  Oh joy!

Thank you to all the people who came to my home over the past week and a half!  What a parade!  I so appreciate it!  My mom got sick with the flu and couldn’t come as she had been, for chemo week.  So in came my Portland family Pat, Katy and Dean Nida to the rescue – yippee family!!  I have the best girlfriends in the world!  Caroline Petrich, Becca Blevins, Wendy Weaver, Leisl Stientjes, Sarah Sharp, Machelle Brass, Whitney Pilsbury, Dennise Kowalczyk – thank you for the delicious food and visits!  Neighbors Joe Shoemaker and April Hansen thanks for your continued support and taking out my garbage!  Guy friends and fellow Portland Executives Association members, Dick Hartung (LCL Homes) and Casey Phillips (Phillips Electronics,) and Fred Graetzer (Standard Appliance): thanks for helping with my house this week.  When it rains it pours and the house needs fixing all of a sudden. Thank you to Shelley Cooper (Xenium Resources,) Patti Henry (Salon Shabumi) and the women of the Portland Executives Association who hosted a CABI clothing party in my honor and donated 50% of the commission to my medical fund.  You are really the best!

 

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.

Meds690

 

Week 8 – Halfway through chemo and hesitant

Week 8 – Halfway through chemo and hesitant

9/9/13

Chemo round 4, 2nd week of recovery.

I’m officially halfway through my chemo treatments today.  I begin the next phase and the new drug, Taxol, tomorrow.  I don’t feel ready.  Honestly, I don’t want to go.  I scared to put more and new side effects on top of what I already have.  I did not recover as well from this last round as I have previously.  I did not have four good days at the end of 10 days this time.  I’m hopefully for this last 24 hours.  Although I know 2 more months and then another month of recovery before surgery will seem like nothing in terms of the scope of my life, each day feels very long right now.  3 more months of chemo side effects feels like forever.  And yet, the alternative is far worse so I, like all the others before me, will celebrate this half way mark and march back into chemo tomorrow.  Hook me up to the IV and pump the poison in again to make me feel worse so that my lovely oncologist, Dr, Alison Conlin, will use the phrase “curable cancer” again as she did for the first time during my last treatment.   I wonder what it feels like for those who don’t have curable cancer and are faced with yet another round of chemo that will make them feel like hell knowing they won’t ever recover.  Would I do that to extend my life, but within the context of a lower quality of life?

Truthfully, though I’ve always loved a good party, or in the case this afternoon a sailboat ride if possible after an ‘emergency’ IV for dehydration (I didn’t end up going sailing), I don’t feel much like celebrating my midway victory.  I don’t feel like it’s all downhill from here.  I imagine I would if I felt better.  Instead I feel the side effects.  The fatigue, the continuing nausea, the craziness, tears and anger from the massive dosed of steroids and, worse of all, the new side effect of terribly painful mouth sores.  Perhaps they are 3cm mouth sores from steroids.  I can’t eat or drink without crying from the pain.  I can’t talk or smile without pain, so I don’t talk or smile.  I numb them with a mouth rinse before I try to do any of the before mentioned necessities but the numbness lasts just minutes before the pain takes over.  I’ve disliked other side effects, the worst being the steroid craziness, but this pain is worse than that.  It’s 7:37AM and I’m counting down the minutes to 8:00 to call the doctor again.

The past two weeks were more like how I envisioned going through chemo might be before I did it.  I expected I would be very ill, in bed most of the time, disinterested in food…  I started this projected “Finding Beauty in Cancer” thinking I would use the idea to find the little things that were meaningful and beautiful in my life in the midst of this.  Not beauty in myself, but in what and who was around me.  I was able to practice this original concept over the past two weeks, but found it much harder than expected when I simply felt terrible.  However, there was plenty of beauty.  A three-night trip to Rockaway Beach with an ocean-front hotel room where I watched the ocean waves through my bedroom window.  My mother’s favorite place next is at the seaside and I enjoyed watching her happy as a child despite her concern for me.  We swam in the pool there and she fluttered around like an 8 year old not a 78 year old.  We go to the same seaside knick-knack shop we did when I was a small child and look for seashells to buy.  I want starfish for an upcoming “Under the Sea” photo shoot that is planned where I’ll have an octopus temporarily tattooed around the right side of my body like I envisioned while laying in the MRI machine two months ago.  However, all of the starfish are little, not like the ones I used to buy here.  The owners says he can’t get them any longer.  I wonder if that’s a factor of the starfish getting smaller or demand for exports taking them big ones out of our local market.  I wonder about how the ocean has changed since I was a child.  How there are no full shells on the sand during the low tide.  Only hollowed out crab shells and broken bits of clams.  No whole perfect sand dollars like when I was small child.  We tuck them in our sweatshirt pockets and carry them home as treasures or break the chipped one open fully to find the three little seagulls hiding inside.

Mom and I sit outside of our hotel room, a towel protecting my fragile skin from the sun and watch 3 whales blowing spray.  At first they are close to the shore, directly in front us.   The setting sun shimmers off their skin as they breach slightly beyond the surface.  Every few minutes we see them blow and follow their path as they move quickly to the south and out to see.  It’s amazing how long we can still see the spray.  Blow one, then two, then finally three.

This post to be continued…

 

Week 6 – Chemotherapy side effects. Tears, frustration & gratitude

Week 6

8/22/13

Chemo round 3, 2nd week of recovery

My chemotherapy and the side effects

I had no real idea what chemo would be like even though I’ve seen people go through it.  I’m assuming most others do not either, so I’ve decided to write about my experience thus far.  Perhaps it will allow those in my life a clearer picture of what it’s like for me.  Maybe someone will read this and it will help them navigate if they get cancer. There are MANY cocktails of chemo and no one responds exactly the same way to the any treatment.  It’s impossible to predict completely.  For me, the loss of control is one of the hardest parts of this process.

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’s 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?

My Chemotherapy Details:

Type of chemo:   ACT. “ACT” stands for A-Adriamycin, C-Cytoxan, T-Taxol. One of two main breast cancer regiments for Invasive Ductal Carcinoma.  Given intravenously via a port placed in my chest.

Frequency:  Chemo every 2 weeks.  Shot of Neulasta exactly 24 hours after chemo ends.

Location: Both my chemo and shot must be administered at the hospital.

Duration:  16 weeks total.  8 treatments.  My chemo started in mid-July and will conclude at the end of October 2013.  Each treatment (so far) takes up a full day and I’m at the hospital from about 9 or 10AM – 4PM.  The Neulasta shot appointment takes about 45 minutes.

Side effects (so far) Simply add “extreme” to each: fatigue, steroid rage (sleepless, jitters, tears, anger, out of control feeling) chemo brain (foggy, loss of memory, no ability to connect the dots quickly,) hair loss, nausea, night sweats, mouth sores, dry eyes, dry skin with rash, bone aches, blurred vision, weight loss, headaches, constipation, weak voice.  8/24/13 – I’m at week 6 of 16 and during the AC portion of the ACT treatment.  Who knows what T will bring.  I’ll update this post as I go.

My Experience with chemo so far:

Yes, really, much of it sucks.  No way around it.  There are beautiful moments when I appreciate my life, friends and family like never before, but overall “it blows,” as one of my new COO business clients, put it.  He’s right, and I love that he used that phrase as it made me laugh.  Yet, it’s not as bad as I expected it might be.  Life doesn’t stop during chemo.  It’s not like hitting a pause button where you just pick it up again after it’s over.  No, I’m right in the middle of it and life continues – I’m still part of it, but the side effects make me different.  I try to remember, the side effects make me sick, I am not sick.  Although my mind doesn’t completely quit working, it just doesn’t click as quickly or connect the dots as fast, if at all, during the bad days.  I’m not actually throwing up, I just feel waves of nausea throughout the day.  I’m dizzy and off balance.  I can get up and out of bed every day, but the problem is I neither have energy to do anything nor can I be still.  There are steroid and chemo chemicals rushing through my bloodstream and coating my mind in ways that make me feel both hyper and exhausted yet unable to do anything about either.  Where I thought I would have more “choice” over how I felt or dealt with these moments, I find I’m unable to think clearly enough to choose most of the time.  I just “am” during those times and it’s incredibly frustrating.  “Who stole my sharp mind and when will I get it back”? I ask myself.

Hair loss:

Funny, I wrote this entire post before I realized I had forgotten to mention hair loss.  The thing I was most afraid of has now become a small detail I could miss. It started falling out immediate after my 2nd chemo treatment (week 3).  I cut it short (see http://friendsofkimberli.com/week-2-finding-beauty-4-haircut-extravaganza/ during week 2, as everyone told me this would be less traumatic and messy. They were right, and that photo shoot was fun for me.  Find a great hairdresser like Tamara at Oranj Studio to do it!  Right after my 2nd treatment it started falling out on my pillow, in my hands, in the shower.  It came out evenly at first, not in patches, so I was able to wear short but thinning cut for another week. Finally, at the beginning of the week it was falling out everywhere becoming messy and stressful.  It was time.  I called Tamara, she came in on her day off, and together with my little brother, Dean, we had another little party and shaved it. Not all at once, but in stages.  We even tried a mohawk!  In the end, I was bald as a billiard ball and laughing.  I looked good.  Tamara was fun. It was going to be okay. Dean and I called sister Katy and we met for dinner outside at Ken’s Artisan Pizza.  We sat outside on a hot summer night and I tried out being bald for the first time.  No one stared.  No one laughed.  I don’t know what I expected, but it was all relatively normal as I felt okay with it. I was tired from the chemo, but needed to be in public to begin to ‘feel’ what being bald was going to mean, to mean whether or not I would cover it up immediately.  I decided to just be with it for a couple weeks until I was comfortable.  It’s summer, hot and wigs make it hotter.  After 3 weeks of doing this I still prefer bald or just a little hat.  I pretend I’m a super model on assignment.  That is not to say that I don’t miss my long red hair – I do.  However, I’ve just decided to embrace my temporary state of being bald and try to have fun with it.  I look in the mirror and still see me.  My face, my body, my head. It’s been far less traumatic than I thought.  I like the way the wind and the shower feels. I love it when someone asks to touch my head.  It feels wonderful.  By the way, other hair falls out, too.  For whatever reason, I don’t ask as maybe the chemo just forgot and I don’t want to remind it, I still have my eyelashes and eye brows. Thank you!!! No more shaving my legs or arm pits, though.  That’s a nice bonus.  Oh, and one I didn’t think about before, which was a little shocking, pubic hair.  Gone, too.

Steroids & sudden temporary menopause:

I cried tears from my ears after bawling on the acupuncture table and then sitting up.  I cry over anything right now.  Seriously, the Lindsay Lohan interview with Oprah made me bawl.  Ask me about how I’m doing on one of these days, I’ll cry.  Ask me how my cat is doing on one of these days, I’ll cry.  I may also suddenly snap at you.  Please don’t take it personally, I can’t help it even though I try.  According to my cousin, Linda, who has shared this cancer experience and is a huge help in guiding me, this is called “roid rage.”  I looked it up on the interwebs and it’s true, as are all things found there.  I feel out of control at some moments.  Mostly it’s unexpected tears, but sometimes it’s utter frustration with myself and anyone who happens to be around me.  Apologies in advance.  The steroids are really the worst part of chemo so far for me.  I hate not having more say over my emotions or at least having them be logical and connected to something that’s real.  Yes, I can cry over having cancer and the changes it’s brought to my life.  However, even when I don’t feel sad about it my body is reacting with a flood of tears I can’t stop.  Damn it, I just cried writing this!  The treatment is also forcing my body in to a sudden temporary menopause. Oh, what a lovely little glimpse of the future that is.

I want my world to still be extraordinary, creative, full of passion and love.  However, the parameters and measures of what these things mean can not be the same as they were before chemo or I feel like I’m failing.  In order to feel content and happy I have to restructure what living fully means to me now.  I also have to allow those measures to change daily as I recover and can do more.  The 5 days after chemo have very different benchmarks than days 8 or 9 and still different from days 13 and 14.  Even that tentative schedule will change with the next new chemo drug starts for the last 2 months.

October 3, 2013 Week 12 update  I’m now more than half way through chemo and have had two treatments with the T part of the treatment Taxol.  My side effects have changed.  While I still have the chemo brain and fatigue I do not have as much nausea.  I require only one of the the three nausea medications I did during the AC part. I’m no longer losing weight.  Note: contrary to popular belief most people actually gain weight during ACT as the metabolism slows down like in menopause. I no longer have blurred vision and mouth sores.  The mouth sores became so bad bad at the end of the 4th AC treatment I needed antibiotics. I have three new side effects with this drug.  Pain, hot flashes, neuropathy (numbness in hands and feet). The pain is centered in my long bones, arms and legs, for the first several days then lingers in my hands, hips and knees toward the end of the two week cycles.  I have pain medication that takes the edge off, but does not take it away. Sleeping is a problem due to the pain the first 5-7 nights.  Hot flashes started on the 2nd Taxol treatment and where every half hour for the first day.  A sneak peak at menopause!  I was happy being blissfully ignorant thank you.  The neuropathy just started last night (week 12, 9 days into my 2nd Taxol treatment) when suddenly my toes began to tingle.  I’m worried about my fingers as they happen to push a shutter button and play guitar strings and piano keys.  For some people it’s temporary and others permanent.

 

What happens:

The Day Of Chemo:  It’s not so bad.  I was frightened to be in the room when the oncologist first walked me through it before I started.  However, this day is not the most difficult one, by far.  The room at Providence Portland Hospital has nice comfortable chairs for the patients and additional seating for your family member or friend to come with you.  It’s bright and open. There are anywhere from 15-30 people there each time.  The people there are all ages, races, types and stages of cancer and chemo.  It affects anyone as is evidenced by the variety sitting with me every other week.  I check in around 9 or 10 AM each time.  A nurse weighs me, checks my vitals, asks about side effects and sees what they might do to help with them.  I love my nurses.  Every once in a while, I don’t know the schedule, I meet with my oncologist, who reviews my progress.  Then I walk back to the chemo room where (I hate this part) the nurse punctures the skin over the port in my chest and inserts the IV.  Yes, it hurts.  I’m sensitive to pain with my lingering fibromylgia, so it hurts a lot.  Yes, I cry, but not so much over the pain as the knowledge of what’s happening.  Once the first tear wells I can’t stop the others.  After the blood is drawn then I have 45 minutes during which I escape and go outside.  My mom or my mom and friend/honorary sister, Janis, have been with me at each of the previous treatments.  When the blood work comes in they check my red and white blood cell counts as well as all the various acronyms, then decide if I can have chemo that day.  So far so good!  Then my nurse for the day hooks up my first IV and begins the first bags of anti-nausea medication. I’ve usually been there about 2 hours by this time. Buzzers beep around the room as other people finish their bags of concoctions and I wait for mine to beep in turn.  In the meantime I can be on my computer, talk, read, watch a movie.  Not bad!  My buzzer beeps and a new bag of steroids is hung and begins to drip.  I start to feel kind of strange at this point, although it is not immediate.  Just strange.  More buzzers and the lovely nurse comes to start the first bag of chemotherapy.  I begin to feel a little sick at some point during this bag but the nausea medication keeps it in check.  The last part is administered by hand via two large syringes full of red chemo drug.  I think this is the Cytonxan, but I don’t actually care to ask.  This one is given by hand and very slowly as I get a massive headache when it goes in too fast.  I just get a bad headache when it goes in slowly.  Then that’s it, around 6 hours from the time I started I’m finished.  I don’t really feel bad, I feel wired and slightly sick.  The steroids are still overriding the other drugs and I’m not tired at all, but I’m don’t feel normal.  I’m starting to experience the jittery anxiety as well as the beginnings of the chemo brain fog that will descend upon me over the next two days.  The night of the chemo treatment is very difficult.  Even with prescription sleep aids, I’ve been up most of the night.  Since my brain is still pretty clear I’ve just gotten up and either written for the blog or tried to watch movies.

The day after chemo treatment has also been relatively good.  I’m still buzzed on the steroids, shaky but mostly able to function.  On this day, exactly 24 hours after the chemo treatment ended, I go back to the hospital for a shot of Neulasta, either by stomach or arm, to build up my white blood count and immune system.  My red blood count continues to drop regardless, from what I understand.  I am currently at the low end of the normal range on both.  I have acupuncture appointments 2-3 times per week.  I don’t know if they help or not.  How do I know?  I feel bad then I feel bad some more later.  Same with shiatsu.  The Neulasta brings on pain and achiness in the major bones.  My thighs and hips begin to hurt, or sometimes it’s my humerus (upper arm) bone and shoulders.  Sometimes the pain just roams in those areas.  I alternate between Advil and Tylenol every few hours.  This is in addition to the daily steroids and 3 nausea mediation that need to be taken around the clock at specific times.  Add sleep meds and supplements, and you have a boat load of pills and 80 oz of water each day.  That night and day 3 I begin the major skid into begin feeling both exhausted and wired.  In addition to the nausea, the night sweats begin so badly I have wake up every few hours to change my clothes and sides of the bed.  Throw in complete brain fog, dizziness, blurred vision, mouth sores, dry eyes, dry skin with rash, headaches, constipation and a froggy little voice that makes all my callers ask, “Did I wake you up?”  “No, I’m just being froggy.”  There is no such thing as work for me during these first days.  The last round the symptoms were the worst for 7 days than slowly lifted on days 8 and 9.  Add sudden tears or anger from the steroids to that mix and try working.  I’ve felt everything from relief and happiness to be in my studio to total overwhelm and frustration when I tried to work on days 7,8 and 9 this week.  Next week I haven’t booked anything before day 10, which gives me 4 days of work every 2 weeks, at least for the next round before I begin the new chemo drug regiment.  Everyone responds differently, this is just what I can handle right now.

Days 10, 11, 13 and 14 my mind becomes much more clear again and my energy begins to return.  It’s amazing, I feel somewhat normal.  I still tire after an hour of anything but I’m grateful to have my mind back.  This is also about the same time the steroids are clearing my system I think.  I cry much less and feel less frustration.  I can meet with friends, work some, play some and appreciate my life despite the nausea and fatigue that remains.

Gratitude and choosing the loss:

Overall, it’s not really that bad, but the recovery period seems to be getting longer each time, and I have no idea how I’ll respond to the next drug, which begins in two and a half weeks. So I have to let go and see what happens.  I hope it’s better, but I will take whatever comes.  I’ll take all of these side effects, as anyone going through chemo does.  I’ll let go of my hair and my breast in trade for my life.  Yes, I’ll take my life, please, and say thank you very much to chemo and my side effects.

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Week 6 – Pre-Chemo Port Placement surgery (and changing surgeons)

Week 6

August 24, 2014

Looking back on July 15, 2013­

Pre-Chemo Port Placement surgery (and changing surgeons)

This was an outpatient surgery to place a catheter port through which the chemo and cocktail of drugs could be given.  I did it the day before my chemo started.  The port is the alternative to having a huge new IV stuck into my arm every other week.  Painful and dangerous if they make a mistake and the chemo goes in the wrong place, I hear.  I elected to fully enjoy my last week prior to chemo and, instead of having the surgery a week prior to chemo, I did it the day prior.  I do not recommend this unless, like me, you could not possibly waste a good day of your life that week before.  In my case, my oldest step son was in town from NYC, I had a hot new ‘boyfriend,’ I wanted to have the “Hair & Boobs Party” and I had to work as much as possible to make money that week while I still could.  Self-employment has no sick time pay.  Doing it the day prior to starting chemo made the first treatment much more painful and difficult, but I’m glad I did it that way, regardless.  I wanted that extra day of feeling good more than I wanted an easier first week of chemo.

The surgery itself was, well, I don’t remember.  There was a very funny anesthesiologist who I’m sure was sharing hits of his own medicine.  He assured me that although I have ‘redhead pain issues,’ which means it take 4 times as much local to make me numb at the dentist, and Fibromylgia (mostly controlled now), he would knock me out and be by my side if I felt anything or my blood pressure went crazy like it does when I exercise.  My mother and a friend, Amy Bradshaw, sat by while the surgery took place and afterward as I recovered in the room.  We discovered that my codeine allergy also applies to Oxycodone (hmm, you think they the docs might have warned me about this since it’s the same derivative) and after itching like crazy for two hours I was prescribed Valium instead.  WTF?  How did housewives all over America function on this in the 50s? And they drank martinis and had those cute hairstyles?  That’s talent!  I’m not sure it took away the actual pain, but it did make me high as a kite in a very strange way.  My 5’2” mother was like a linebacker blocking the stairwell each time I had to wobble down the hall.  She was sure I would tumble down, taking her with me.  Brave women.  That stuff makes me loopy! I took it that next morning when I started my first chemo treatment and wore a big pink ribbon in my hair all day.  I was still in pain but didn’t care.

The actual ­­lead up to the surgery was incredibly stressful.  First, my actual surgeon was not available, and I needed to either use one of her partners, do my surgery a very early, or delay my chemo start date.  This was a minor surgery, so I elected to use her partner.   That new surgeon said she would not do the surgery until speaking to my cardiologist about an odd exercise-induced high blood pressure issue I have. That sounded reasonable.  She and the cardiologist actually spoke the following day after that Tuesday pre-op appointment regarding the Monday surgery and agreed to proceed.  However, her nurse would not return my call to confirm the surgery.  This meant I did not know if I was having surgery (or, to my understanding, able to start chemo) the following Monday until 4:45 Friday night.  It took 5 messages over the week and finally finding a nurse navigator at the hospital to physically walk into the surgeons’ office, find the nurse in question, ask her and then the navigator called me back.  I have now changed surgeons even though she was the most recommended and I liked her personally.  I can’t imagine going through something like that again prior to a major surgery like the double mastectomy that is to come in November.  Way too stressful on top of a situation that is already stressful.

I’m learning quickly to remove as much additional stress from my life as possible.  This includes situation, some people and even some of my doctors.  You spend far more time talking with a physician’s staff than you do with them.  The staff, and whether or not they have time for you, is extremely important.  I’m not upset with the nurse herself.  I really liked her personally.  I feel that she must be overworked and stressed too, otherwise she would have called me.  I feel badly for her being in that position.  However, my body, my cancer, my life cannot wait on someone else’s busy.  This is my ship and I’m the skipper as much as I can be.  I needed a new crew with a surgeon and nurses who have their own structures in place so they have time to return my calls, sail me straight and help me through the upcoming gale winds.

 

Week 3 – Updates and thank you

Week 3 –  Updates and thank you

Sunday, August 4, 2013

THANK YOU to all those who helped this week in all the ways you know you did. From thoughts to emails, text messages to sitting in chemo with me last Tuesday, thank you.  I so appreciate the love and support. Thank you to those who donated financially through this blog.  I cried as each donation came in and am deeply touched.

MEDICAL:   The week was full of both overwhelming fatigue and gratitude for what and whom I have in my life.  Today is 5 days since chemo and only now able to finally stay awake and keep some focus.  I think there is more that can be done for the nausea.  The pain is not bad at all.  The real problem is not being able to keep my eyes open.

MORE THANK YOU: Thanks to my mom, Helen, for coming from Milton-Freewater, OR, to stay with me, organize the myriad of medications, cook my food and keep me company through the hard time.  Thanks to my birth mother, Pat, and siblings for the visits, food and for installing a new A/C unit in the bedroom as the weather approaches 90 degrees again.  My brother, Dean, along with my old friend from my music days, Stacy Hall, who did the work and made it all right.  Nice to have more of my music life come back today when Tim Ellis played guitar during a mass held in my honor through my Portland Executives friends, Scott Pillsbury and Sherrill Corbett Madeleine Church.  Thanks to all my good PX friends who joined me this morning.  Thanks for those who dropped off fresh Sauvie Island peaches, the great soup and salads –  You know who you are.  I love you dearly.

FOOD:  Groceries and some meals seem to be my main need right now.  Thank you to Pasha Gross, my friend of over 20 years, for offering to create an online Google calendar where you can schedule to assist with a bag of specific groceries or meals.  She will help organize a “soup wheel,” as I don’t feel like cooking and shopping right now.  I have such a specialized diet right now, I know it’s hard to know what to bring.  I think this will help.

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Week 3 – Hair Hair Everywhere

Week 3 – August 2nd after 2nd chemo treatment.

Hair, Hair, Everywhere!

Even my cat is impressed.

It comes out as I run my fingers through it, on my pillow, in the shower…  Don’t touch.  The hairspray will only hold it together for so long.  The time is coming to be bald!  We’ll see if that means bald and beautiful or just bald.  I tried on the wigs and scarves people have lent me this morning.  7 versions of myself.  I’m must curious about the bald one I have yet to see.  I suppose that any shade of red lipstick will work then.

HairFallingOut

Week 1- The chemo party everyone’s talking about.

Blog Update

Weds. July 24, 2013

Chemo wk 2 of 16.  Day 9 of 14 day cycle

It’s Day 9 of my first chemo cycle, which will happen every other Tuesday for 16 weeks.  For the past three days I’ve felt alive and awake again.  Prior to that I can best describe my experience as living in a fog.

I awake each day and think, “It’s a new day. I want to ride my bicycle, I want to create something beautiful.”  I then walk to the sink, wash my face and begin to feel the dizziness and nausea that accompanies me now.  I remind myself that “I am not sick,” but am allowing my body to be poisoned by chemotherapy and many drugs to hold the side effects at bay and that is reason I feel the way I do.  I am not sick AND the means to the end of being a healthy person, chemotherapy, is making me feel sick right now.  And it will pass and I will be better again.  I think all of these positive things then sometimes just throw a middle finger up in the air and want to barf.

Chemo is not the party everyone talks about.  I must have received the wrong invitation! The cocktails are not nearly as tasty as they should be. The hot doctors are mostly female and, although cute, not my thing. Yes, the chemo chairs are comfy and they have little movie devices to pass the time while your IV slowly floods your body with first anti-nausea, then steroids, then poison then an additional bag of poison as a bonus round. They start the party off with smiles and reassurance, but then access the little port, which was surgically placed in your chest and was about to heal nicely, with a sticky needle to feed you the concoction.  You are official ‘hooked in.’  I expect to be beamed up at some point during the process.  I’m looking forward to meeting Scotty.

My mother came to town for the first week, last week.  Thank heavens. I certainly would have either starved to death or fallen down my staircase without her saying, “Get away from those stairs” every time I went down the hallway.  She really did make life much easier. Even my cat was happier to have someone around 24/7 for a few days. My birth mother ran errands and did a great job helping and not hovering. None of us know what we are supposed to do or what our place is right now.  My maternal birth grandmother once said, when I asked what they were feeling when I was placed for adoption, “We were just stumbling around trying to hold one another up.”  I think that’s how we all felt last week as well.  What’s needed? What’s too much?  What’s not enough?  I have no clue, and we are just all figuring it out together.  Whatever anyone does or doesn’t do right now is perfect.  There is no right way to be with this.  Just be with it if you can and maybe we’ll find a pattern or rhythm.  It has been important to laugh and to not talk about cancer all the time.  To ask myself repeatedly, “Is this important right now? Does it add beauty or joy?” If it’s not one of those 3 things I let it go.  There are other days for the rest when my energy is so limited.  A sudden shift of priorities is good for me, and I appreciate the opportunity to practice.  I truly appreciate all the funny Facebook messages you sent and the posting of red lipstick photos which made me laugh and kept me going last week!  That same grandma, the one I met when I reunited with my biological maternal family at age 18, was a feisty redhead until she passed away at age 98 just two years ago, used to say, “Put your lipstick on.  You’ll feel better.” I have adopted that as my motto, adding “red lipstick” as I wondered if after losing my hair, and temporarily my breasts, if red lipstick will actually make me feel better or even beautiful.  I’m trying to get my head around that possibility.