Second Round of Chemo - August 23, 2011

Today my chemo session went well.  Most of all, the cream on my port site helped immensely.  The nurse also sprayed some freezing spray on it, but it was nothing compared to my first session.  She drew blood from the port to check my WBC's and also blood to test my genetic risk for hereditary breast and ovarian cancer.  It will take about 5 weeks to find out the results.

Secondly, we (my friend Jen E. went with me....thanks, Jen) met with Dr. Ririe and he said since I have asked for dose-dense therapy my chemo time will be reduced significantly.  For the rest of my chemo it will be every two weeks and if I figured it out correctly, I will be done around November 15th!  In time for Thanksgiving.  Of course, I still have 5-6 weeks of radiation to still finish, but it's still good news that I will get done sooner. (The first plan was 6 months and 16 rounds of chemo.  Dose-dense will make it 8 treatments!  It's a catch-22 situation, because the dose-dense therapy will likely hit me pretty hard.  But, if it kills the cancer, I'm ready for it.

I did tell him about my breathing difficulties (none today) and my back pain.  He's scheduled an MRI for tomorrow.  It's quite painful so I will be curious to see if it shows anything (hopefully not cancer).  I have to saw I am so thankful for everyone on the entire team at the Cancer Center.  They rock!

IV meds into my port.  Dexamethazone, Emend, Adiramycin, Cytoxan, and Zofran.

Tired, but happy to have another done down.  Now, off to bed.  Boy, did I get my but chewed by one of the nurses to REST, REST, REST.  Message received.  

Chemo #2 Tomorrow, August 23, 2011

Yup, A/C Chemo 2 is tomorrow.  I'm still quite wiped out with low WBC's.  Over the weekend I had difficulty breathing and am having an issue with major spasms in my spine.

We had a large fire on one of our beloved mountains last week so I think has contributed to the breathing issue but I have no idea what I did to my back.  I feel intense pressure in the back of my neck and all the way down my spine.  I'll talk with the docs about both issues tomorrow.

I rested/napped a lot yesterday and was asleep as soon as my head hit the pillow last night.  Because I still don't feel well, I'm resting today before being bombarded by chemo tomorrow.  I hope my WBC's are high enough to get chemo!

A dear friend sent me this video and I LOVE it.  Another of my mantra's:  Be Strong.

Balancing Act

Look at this incredible photo!  It is by extraordinary artist Michael Grab.  His medium is rocks and he balances them through a meditative act.  I've loved photos like this for years and he now is another of my heroes.  The photograph is a great metaphor for how I feel about my life right now.  A balancing act.

Find the story at  http://www.gravityglue.com/About.html  There is also an AMAZING video of this at:  http://boingboing.net/2011/08/09/video-of-a-river-rock-balancer.html

I'm finding it very difficult to learn how to balance my life correctly right now.  Yes, my last post was post-exercise adrenaline rush positiveness...and I've been incredibly tired since that day.  I awoke early yesterday and went to work while I felt good.  Today, I crashed big time.  I was only able to stay at work an hour.  I was back in bed and asleep as soon as my bed hit the pillow.  Apparently, in this area I'm a slow learner.  I listen to my body, but my head is saying I can push through. It's frustrating!  I need to learn how to balance my life like Michael Grab. What an incredible talent.  I'm so inspired.  My rocks are family, friends, work, reading, laundry, cleaning, health/exercise, and now....cancer.

While I list cancer last, I've found it to be another full-time job, similar to Kris Carr's explanation of her research into her cancer diagnosis and battle in "Crazy Sexy Cancer."  The bills are now pouring in daily and I review them mentally tallying how much it is costing but not being so uptight about it that I know exactly how much it is costing.  I talked about the cost of the Neulasta shot last night with Andrea and Bryan (Sis and Boyfriend).  Neulasta is essentially a white blood cell booster and it ranges from $8,000-$10,000 per shot.  Yes, I said PER SHOT.  So, as Bryan and I talked about the cost of the shot last night, I asked, "how do you put a price on your life?"  And he said, "your life is priceless."  Wow.  That was so profound.  

On a lighter note, my sister had mentioned a fruit called mangosteen that is supposed to be a new superfruit. She brought it up again last night in conversation and I immediately said, "I have mangosteen pee."  It just blurted out of my mouth, but what I meant to say was I have peach mangosteen tea!!!  For some reason, we both absolutely laughed about it until we were crying.  It was a great moment, maybe one of those "you had to be there," but I had to acknowledge it because it was so hilarious.  And we know I need some good laughs right now.  [Note:  they were visiting because we had furniture delivered.  This was a BIG deal.  My husband started a remodel project on the living room 3-4 years ago and sold our furniture in a band fundraiser yard sale and the only thing filling the living room since then has been wood, an air compressor, containers or stain, ladder...you get the picture. I am a very happy woman to have furniture in my living room to entertain guests again.  It's not Michael's fault, he is adjusting to his life with a brain injury - again - learning the balancing act.]

In addition to worrying about the cost of cancer treatments (despite having great health insurance) I am now feeling more affects of the chemotherapy.  My hair (stubble) had thinned quite a bit and my scalp was so sensitive I shaved it all off today.  It has not grown for at least a week.  I don't have to shave my legs any more.  Chemotherapy BONUS!  (the only one) I'm not freaked out about my hair at all.  

What I don't like are the other new health-related side effects. I still have sores in my mouth/throat, and now added to the list is dry mouth and sensitive teeth, and the bone pain that has started in the last few days.  And the bone pain is bound to get worse according to patient information on Neulasta.  I know it's the first 1.5 miles of my personal cancer 26.2 mile marathon. I have a long way to go with treatments.  I have a sense that exhaustion and pain are going to be pacing right alongside me on the journey.  If it gets rid of the cancer, BRING IT.  My life is priceless.  

P.S.  Thanks to all of you for being my cheerleaders in the crowd!

GREAT Hike this Morning

I have only been to my favorite hiking spot once since my diagnosis.  When I woke up I jumped up and got ready to go without even thinking twice about it.  And it was so awesome!  First off, I stopped to take a photo of a row of sunflowers and the path ahead of me.  You can just see a gentleman and his two dogs in the photo.  Their names were Maynard, Shadow, and Tim.  I was feeling a bit emotional, wiping away a tear as we got to close to one another.  I said "good morning" and he did as well.  One of us said it was a beautiful morning.  I said, "this is my first hike up here since my first chemotherapy treatment for breast cancer, so it's pretty special to me."  After that we just had an honest conversation about ourselves.  Clearly, I wear my heart on my sleeve and poured out my challenges of late.  I said he probably didn't expect that kind of encounter this morning and he said "everything happens for a reason."  We talked about spirituality and how important it is to life.  Before we departed he said, "say hi to God."  It was awesome!

 A complete reverse from hearing "are you terminal" yesterday.  God is good and I believe he intentionally sent Tim in my path today.  I hiked along at a much slower pace than I did when I was "working out."  Today certainly felt like a work out since I haven't been able to walk for so long - BUT IT WAS AWESOME.  I took time to stop and take many photos.  I sat on a rock and took my hat off and just soaked up the sun.  It did wonders for my spirit.

Here's a photo I took of my shoes.  I'm trying to eloquently express how I feel about the photo.  I'm on this journey with the support of family, friends, and the oncology team, but it's strong legs that will be with me each step of the way.  I am just beyond happy to have had the energy to go and walk this morning.  I actually tried to run a tiny bit, but reminded myself to take it easy and just enjoy the beauty of the nature around me.

My final photo is another of many I took, but it turned out so incredibly I also wanted to share.  It's a sunflower that just looks to be glowing.  It is now the wallpaper on my phone as a memento from such a wonderfully uplifting morning.  And the day is just getting started!

A gift from above.

Terminal? I Think Not.

I went shopping today. For some items that will help my immune system. And, I got a few new goodies for myself. I bought pink towels for the kitchen. They have neat breast cancer awareness ribbons on them with butterflies. At the checkstand, the clerk said she thought they were cute. I said, "yes, I love them. I have breast cancer and am buying them for my kitchen." She immediately said, "are you terminal?" I think my jaw will be sore in the morning because it hit the floor. What a question!

I wish I would have thought quick enough to say "life is terminal." But, I just said, "no, I have an aggressive and advanced metastatic breast cancer. I'm going through chemotherapy and radiation to beat it." She wished me good luck and I left. Walking away I just laughed out loud. Amazed by her comment. I had on a nice hat to cover my head and had makeup on. I thought I looked pretty darn good today. That bubble was burst. After I unloaded the bags into my car I looked at myself in the mirror. I still think I look okay today. I am wicked tired. I had envisioned doing some additional shopping, and after that short trip and comment, I went home, ate lunch and took a nap.

Now that I've had some time to process what happened, I'm just sad she didn't think before she said what she did. Is she kicking herself now? Realizing it was insensitive? I'll never know. I certainly have said things I regretted immediately after saying them, we all have, but I think this also shows we must provide more education to the public that cancer is not the death sentence it once was. The field of oncology has made giant strides to beat this devastating disease. People are being screened and diagnosed sooner. Surgery, chemotherapy, and radiation treatments and alternative medicine, meditation, and so forth, are allowing people to beat cancer with improvements on quality of life while battling it with medications to make the battle easier.

I purchased watermelon, raspberries, blueberries, blackberries, the towels, eye shadow, mascara, makeup remover, Butterfinger candy bars (two), hand sanitizer, echinicea tea, and mineral water (without carbonation because that hurts too much to drink right now). I was proud of the healthy items in my cart. Butterfinger candy bars are comfort food. Good for the soul.

If she would have simply thought about what I was purchasing, she would have realized I'm busy living, not thinking about dying. And that's what I'm doing!
P.S.  The "THINK" photo is from Pure Nourishment.  I follow her on Facebook and it popped up on FB this afternoon.  Perfect timing. 

One More Thing

I wanted to say a special "thank you" to my co-workers at the health department.  Every Friday the staff can wear pink and/or hats or both to support breast cancer awareness and my journey.  THANK YOU.  And, thanks Lindsey for the idea.  It warms my heart.  Friday is always an awesome day and now even moreso!

Lab Results and More - August 12, 2011

Hmmm.  I'm not even sure where to start.  I guess, the greatest thing is that I stood up for myself and said I wanted the blood draw done in my hand/arm because my port area hurts so bad.  Done.  But, I have to prepare myself for my next chemo because that will need to be done through the port.  I have a cream I'll apply to the area 45 minutes prior to the chemo session that I hope will do its intended job and numb the area.  Really, I am not afraid of needles - I even have to watch them doing the draw - the port just HURTS.

So, a nurse practitioner met with me about 20 minutes later and told me my white blood cell counts are already critically low.  Big bummer.  Normal range is 3.9-9.0 K/uL and mine was 1.4 K/uL.  My neutrophils were also a concern and very low.  Normal range is 1.7-8.0 K/uL and mine was 0.5 K/uL.  I have a copy of the lab work and other things are low as well, but these two are the ones they were the most concerned about.

White blood cells race to a site of infection and fight it.  Neutrophils are a form of white blood cell that eat pathogenic cells.  So, my ability to fight of infection is greatly compromised.  I immediately wondered if I need to start wearing a mask.  The NP read my mind and said I don't need to take that precaution yet.  Just avoiding large gatherings and step up my hand washing.  I work in public health and during H1N1 talked often about the importance of hand washing; she was preaching to the choir...although she would have cringed had I started to sing!

The next topic in my long list prepared last night for the appointment.  Tackling the side effects from the anti-nausea medications.  I'll only take Zofran next time and see if that does the trick.  Apparently Compazine is well-known for my chief complaints.

Then, my sore throat and heart burn.  The NP said I'm already exhibiting signs of esophagitis.  I mouth sores and a pretty inflamed throat during my exam.  She prescribed "miracle mouthwash" for me.  It's a mixture of lidocaine, maalox, and benadryl.  I tried it with lunch (the only shots I'll be drinking for now) and it made my lips and throat numb.  Very odd feeling.  The staff at Maag's, (love you guys) told me to carefully chew my food while taking this because it will affect my gag reflex and I could choke.  I joked with them, "great, I have cancer, but I might die because I choked on a piece of steak."  Note:  another bucket list item is to be a stand-up comedienne.  She also said people my age suffer from chemotherapy side effects moreso than a 70 year-old would.  Strange. I would think younger people's immune system would conquer better.  She actually said the little pediatric kids suffer the worst.  So sad.  But, the point is, chemo is doing its work and I'm getting sicker.  Is it strange that I'm glad?  It means the chemotherapy is doing its work.  Killing good cells and bad.

Next, I asked for dose-dense chemotherapy.  It was talked about in the appointment when I was told the of my chemotherapy options.  I have a TNBC sister in Texas that started chemo five days before I did, and gets chemo every two weeks vs. my every three weeks.  The oncologist, now also meeting with me, agreed we can go this route.  My next chemotherapy has to be three weeks from my first, but after that I can schedule them every two weeks.  I will have my second round on August 23rd.  On August 24th, because of my low white blood cell count, I will receive a shot named Neulasta.  It must be a wonder drug, because it ranges from $8,000-$10,000 per shot.  I cringe, cringe, cringe regarding financial costs, but this is my life we're talking about.

They are now going to start making arrangements for Hereditary Breast and Ovarian Cancer (HBOC) testing.      As per its name it will determine if I carry genes for breast and ovarian cancer.  Part of the tests will show if I'm positive for BRCA-1 and/or BRCA-2.  If so, I would likely opt for a bi-lateral mastectomy and have my ovaries removed to reduce my chances for recurrence.  I will weigh those options carefully and meet with genetic counselors.  We'll see.

I think that sums up the appointment.  Afterwards I had to go to the hospital and have an echocardiogram (ultrasound of my heart).  Adriamycin, the red devil, can damage my heart.  The ultrasound technician gave me a great compliment.  She said my heart was very photogenic!  NICE!  She had a hard time seeing my endocardium, so I had to have a dye inserted through an IV to light things up a little more.  It was wicked cool to see the valves in my heart flapping away.  I thought they looked like turtle legs swimming.  Hopefully no damage comes to my strong heart.

I took the afternoon off and slept for hours.  A bit overwhelmed with the results and information learned today.  I know I need to buckle down, work to keep germs/infection at bay, and stay rested.

First Labs Tomorrow

Tomorrow I go to the cancer center in the morning to get lab work done to check my white blood cell and platelet counts.  I'm EXTREMELY anxious about it already because they will use my port.  I am not typically afraid of needles, but my first chemo was one day after the port was placed in my chest and it HURT so much when they pushed the needle into my chest.  Yes, it goes through the skin and for chemo, the needle was large and one inch long.  Major anxiety for tomorrow.

I have other concerns as well.  I had a bloody nose last night.  I haven't had a bloody nose for years.  I have also developed sores in the back of my throat, and I think down my esophagus.  I am having difficulty with eating and drinking.  To deal with the boredom of drinking water I usually have club soda at dinner and I can't drink it any longer.  The carbonation burns going down. Like, painful.  So, no more club soda.  I've also had trouble this week with heartburn and cannot tolerate mild spice of Mexican food at all.  Very sad, because I've been craving it.  They explained in my last appointment this would happen.  Chemotherapy kills cancer cells and all new cells.  Yes, hair cells, but the cells from your mouth through your intestinal system are all new cells as well.  Thus, they were insistent I get an anti-diarrhea medication because that will become an issue too.  How much fun is this?!  The fun comes tonight.  Conor picked up ice cream from a local shop for Olivia and I.  She's feeling under the weather today.  (Thank you, Conor.  Feel better, Olivia.)  Besides Frosty's I'm not a big ice cream fan, but love sherbet, so I cannot wait for that a little later tonight to soothe my throat.

It's fine as long as chemo is doing it's job.  I forgot to mention this...when I had my chemo on August 2nd I asked the P.A. to feel the lump under my arm.  She did, and agreed it's a lump.  She said, "if it's cancer, the chemotherapy will make it smaller, and if it's not then we'll know it's something else."  I was thankful she at least acknowledged it's a lump and not "in my head."  Hopefully, with more chemo it goes away!  I think it's now much larger than the tumor removed from my breast in the first surgery.  Argh.

I have to say, I'm actually really enjoying being creative with hats and scarves.  It's HOT here in southeastern Idaho right now, so when I'm on my way home at night I rip them off on my way home from work.  I actually enjoy the freedom from wearing something to cover my baldness.  I'm still feeling a little self-conscious about my baldness. Mainly because my scalp hasn't seen sunlight in years and my head is very white.  A co-worker said I should use a little tanning cream - a good suggestion I may try!  I also love that I'm not having bad hair days and it's VERY quick getting ready in the morning!  Love, love, love that freedom!  Yes, it's freeing.  I"m not defined by my hair.  And, I'm not going to be defined by cancer.

I hear people say often, "I'm not defined by my cancer."  I have time now where I go for longer moments of time without thinking about cancer - but I have to admit I feel very preoccupied by cancer.  There are appointments, paperwork, and my thoughts.  The "what if's?"  Sure, you can say I need to stay positive, and I am, but I have those thoughts.  I wonder, should really develop a bucket list?

Don't freak out, I'm not planning my funeral.  With the exception and reminder to my husband kids that Spirit in the Sky by Norman Greenbaum must be played!  I've been saying that for years.  Right now, it's a mental list, with the exception of wanting to go to the Tour de France, and possibly starting a LiveSTRONG organization in Idaho.    The Lance Armstrong Foundation has contacted me about cancer following a question I had on their site and they have provided me with a great deal of information for where I can look for help in certain areas.  As I viewed their site for cancer patients, at www.livestrong.org, I noticed Idaho is not listed as a state with an organization for LiveSTRONG.  Those that know me well know I draw great inspiration from Lance.  Yes, I call him "Lance," as if I've actually met him and know him well!  (Darin, you can laugh!!! )  So, minor funeral planning aside.....I'm LIVING.  I'm speaking my mind a little more and am working diligently on the mindset to LIVE IN THE MOMENT .

I'm also missing Michael a lot.  He's now been at Casa Colina, a hospital in southern California since June 20th.  I can tell by his voice at night he's still battling acute headaches.  A specialist from UCLA went to the hospital to see him at the end of July, prescribed a new pain med, and said, "I'll see you in a month."  So, he's in the hospital wing for brain and spinal cord injuries, on a plastic hospital bed with a plastic pillow going through physical and occupational therapy every day.  It's hell for him.  For us.  I go through the motions of daily life and then think to myself, "I haven't seen my husband since I was diagnosed with cancer."  That sucks.  I mean, it really sucks.  [Note:  he hit two bombs in Iraq during his first tour of duty in 2006, the five year anniversary was July 31st and August 1st.  I find it ironic that I started chemotherapy almost exactly five years to the day that he hit the bombs.]  I'll talk to him soon.  We talk nightly.  The length depends on how each of us is feeling.  Sometimes it's brief.  Last night both of us felt well enough to talk for an hour.  It was great.  Miss you, honey.

Okay, off to do some reading for work.  Luckily, I have one night a week that I don't need to worry about dinner.  My Sissy is bringing dinner tonight.  She and Olivia have a deal to cook together once a week, but like I said, Olivia is feeling under the weather, so my Sis is bringing food over.  Jimmy Dean's special recipe by a family friend.  So thankful, Sissy.  Grateful. Always remember to be GRATEFUL.

Feeling Better...Thank Goodness!

Yes!  I am feeling better!  I am SO happy about it!   I've had a few moments today when I thought I was going to "lose my cookies" but they quickly went away.  Around noon, it occurred to me that I was able to concentrate so much better and maybe it was because I was taking the anti-nausea medications.  I abhor nausea and vomiting so I just hugged my Zofran and Compazine with love.

This evening, I looked up some of the issues I've been dealing with the last four days and they were explained by the side effects list for the two drugs.

  - Blurred vision
  - Agitation
  - Nausea (which is what they are supposed to stop)
  - Fatigue
  - A word that rhymes with anticipation

Lesson learned - read the information guides from pharmacy regardless of how desperately you want the medication to work.  I will be asking for something different after my next round of chemo.  I actually go to the cancer center on Friday, during what they refer to as the "nadir," which is used in chemotherapy treatment when looking at blood counts such as white blood cells and platelets.  So, maybe I'll bring it up then.  But, I loathe vomiting, so maybe I have to deal with the side effects.  I hope not.

I treated myself to a little online retail therapy and purchased items from The Breast Cancer Store.  Four percent of the purchase goes towards the cost of a mammogram for someone (bonus).  I love everything I got, but one in particular I wanted to share.  It's a bracelet and it says:

What Cancer Cannot Do:  corrode faith, shatter hope, destroy peace, silence courage, invade the soul, steal eternal life, conquer the soul, cripple love, kill friendship, suppress memories.


LOVE that.  Huh?!

I also watched the movie "Crazy Sexy Cancer" by Kris Carr.  It was good!  Inspirational.  She has written books about healthy eating while living with cancer.  Another book to read!  So many books and so little time.

Shortage on Chemo Drugs

I mentioned the other day there is a shortage of one of my chemotherapy drugs.  Here is the story from ABC News.

It's a long article, but for someone like myself, who was told Taxol would be part of my treatment plan, it was worth reading, and distressing, to say the least.  There is a video and a long article.  Both are worth watching/reading if you're interested.

http://abcnews.go.com/Health/CancerPreventionAndTreatment/chemo-drug-taxol-shortage-leaves-doctors-scrambling-cancer/story?id=13906891

Still feeling rough.  Very nauseated and fatigued.  A little down.  All a normal part of the process, I'm sure.

Four Days After 1st Chemo

It is Saturday night.  A storm is blowing through the area.  I love a good storm.  Wind whipping through the trees and lightning and thunder making their presence known.  Of late, our Jack Russell Terrier has taken to barking at thunder.  Most dogs cower at the sound, and Gidget with her little-dog Napoleon complex, barks like crazy as if she can hush the great noise from the sky.  It is hilarious.  

While thinking of storms, I wonder if there is something akin to a storm taking place in my body?  I am extremely fatigued and nauseated.  Those are the signs and symptoms that chemotherapy is doing its job.  I'm very grateful for Zofran and Compazine to keep nausea in check.  I have been close to vomiting, but fortunately it hasn't happened yet.  My appetite is a little to be desired, but I am making sure to eat small meals to keep my strength up.

Last night I went to my 25 year class reunion.  It was an 80's reunion for Pocatello and Highland High School. I did not wear a hat to cover my baldness.  First, it was simply too hot to wear a hat; and second, I am having more frequent hot flashes - so I went sans hat.  Everyone was incredibly supportive and said I rocked the bald look.  I caught a glimpse of myself in a reflection as we walked in and it still takes my breath away to see my hair is gone.  It was uplifting to go and see friends that I had gone to school with since I was eight years old.  Very good for my spirits.  Not so good for my fatigue factor.  I've slept most of the day.  

 I should also mention that I saw the surgeon yesterday.  My chest where the port was put in is still extremely sore.  I called the nurse and she had me come in.  Then, the surgeon took a look at it and said it looks like it is healing well, despite the bruising and two inch incision, but it HURTS.  I told her it hurts to walk, to talk, and to move.  She asked about pain meds I'm taking.  I told her I've been taking Ibuprofen 800.  She thought I had something stronger.  And scolded me for not having called sooner.  I was so groggy when I got out of surgery I misunderstood and thought all I needed was Ibuprofen.  Now I have something much stronger than Ibuprofen.  Thank goodness. 

I'm still listening to visualization tapes and guided imagery.  I visualize the chemotherapy drugs killing off each little cancer cell.  One tape I listen to says they will burn, blister, and shrivel after being subjected to chemotherapy.  That's good!  Zap, burn, and die, to all the little evil cells.  

Back to sleep.  

Chemotherapy #1 - August 2, 2011

Chemo numero uno is finito.  (And that's the extent of my Spanish despite having taken it twice on college.)

My Sis, Olivia, and Conor went with me.  We got a thorough review of what was to take place, side effects of the medications, and so forth, from a PA named Jennifer.  She was great!  Everyone at the Cancer Center is. She did tell me that I may not get Taxol for 12 weeks at the end of my chemo, because there is a nationwide shortage of it.  Instead, if it is not available, I would get something called Taxotere.  I have mixed feelings about it.  Taxotere would only be every three weeks for four cycles whereas the Taxol would be every week for 12 weeks.  I want what the doc originally suggested, even if it's every week for 12 weeks.  I want the big guns to kill all of the cancer.  I'm going to research why there is a shortage and will post about it later.

Jennifer explained they consider chemotherapy a cycle of death, growth, and life. In this cycle, my white blood cell counts will be taken between days 10-14, which is the "nadir" and lowest point my immune system will be during the cycle.  I've been given a new thermometer and the biggest thing to watch for is infection.  Got it.  I'm scheduled to go in for lab work on August 12th and I will also get an echocardiogram that day to get a baseline of my heart.  Adriamycin can damage my heart.  One of the drugs can also cause leukemia later but I'm not concerned about that at the moment.  Just killing the current cancer cells inhabiting my body.

Then, my groupies and I moved to the chemo suite.  Saralee and Brooke were the oncology nurses today.  I explained that my port was placed in my chest yesterday and VERY tender.  Saralee sprayed a numbing spray on it and inserted a 1 inch needle into the port to start my IV's.  I would rate the pain as excruciating.  I locked on to my sister's eyes and used her energy to get through it, and a few prayers.  Olivia is petrified of needles and almost passed out herself.

Then I received Zofran, Dexamethazone, and Emend.  All anti-nausea meds.  I was given scripts for Zofran and Compazine to take at home.  Then, first chemotherapy drug, Adriamycin, was injected into my line.  It's nicknamed the "red devil" because it is BRIGHT red.  It's also highly toxic.  It will burn skin on contact so extra precautions must be taken with it.  Sarahlee put three syringes into my IV/Port.

Next, was the chemotherapy drug, Cytoxan, and it took about an hour to go through.  At one point I needed to go to the bathroom and Andrea/Sissy escorted me.  She didn't want to let me out of her site...so cute.  She whispered through the door and asked if my pee was red yet.  SO FUNNY!  We giggled like crazy.  It was too!  I let her in the room to view the reddish colored pee!  At the end of the session she was rubbing my leg and said I rock...and I said, "I'm more like a boulder!"  More major giggling.  SO great to be laughing even while getting chemo!

We left the cancer center around 12:45 pm. We got some groceries.  I wasn't quite sure what to shop for.  Jennifer said I should avoid all of my favorite foods because I will dislike them for the rest of my life after chemotherapy.  My sister and I talked about that...what in the world do you eat if you can't eat your favorite foods?!  Conor said, "liver and onions" when we talked about it on the way home.  UGH.  And double UGH.

Now, I'm just extremely tired.  The port area still hurts like crazy.  I can barely move my right arm.  Oh, I forgot to mention, when the surgeon said there were pockets of pus in the area where she put the "PowerPort."  She was perplexed by that and said we need to watch it closely for infection. Will do.

I tried to nap this afternoon, but couldn't.  I'm tired.  But I feel strange.  Maybe it's the anti-nausea medications.  I visualized the chemotherapy medications doing their work to eliminate the cancer cells.  Wocka, wocka, wocka!  My hands and feet are swelling tonight.  I don't remember this being a listed side effect.  Must look at my paperwork to see if it is a side effect - and elevate.

Just a few pics from my day below:

Adriamycin, AKA the red devil.

Sad face because the insertion of the needle into the port hurt so badly!

Beautiful flowers from Jackie and Peggy.  Thank you!

Here is our family last Christmas. What my hair used to look like.  Now I look like my husband!

Port Placement & Chemo Kickoff

I had surgery to have the port placed below my clavicle yesterday.  There is a round plastic and metal object and a line that goes directly into my subclavian artery.

First off, while talking to the nurse in pre-op we realized her cousin went to Iraq with Michael on his second tour of duty!  What a small world.  His name is Ira and he is an AWESOME guy.  She was GREAT as well.  Small world.  The Lord put her in the room with me, I'm sure.

For some reason I thought I was just going to get a local and I would be awake during the procedure and that it would only take 15 minutes.  I misunderstood.  They heavily sedated me with Versed and Propofal and it took an hour.  Conor was my chauffeur to the hospital and was there to hold my hand.  (Olivia started marching band practice yesterday!!!)  It was, and is, very painful.  I bled through the dressings so I had to change them last night.  I can barely lift my arm.  I cannot see how they will be able to use it to give me chemotherapy today.  It HURTS terribly.  I know they have a numbing cream.  Maybe that will be the trick.

The other stressor is the surgeon said she saw pockets of pus in the area where she put the port.  I was very groggy so I cannot remember anything other than she said she is concerned about infection.  I'm wondering how/why in the world I have pus in that area?  The area seemed perfectly fine to me.  They also gave me a packet of information about the port.  It's called a "PowerPort."  I now have a bracelet to go with my LiveSTRONG and breast cancer awareness bracelets.  Medical providers need to know what brand it is.

I also had a reaction to the pain meds - ITCHING!!!  Typically I take Benadryl to make the itching stop but they wanted me to take it after I got home because I had so many other meds in my system.  So, Conor held my hand and kept me from itching.  He's 19 and works part-time so I don't see him often.  It was so good to spend time with him.

We left the hospital around 3 p.m. and went home quickly and went to a birthday party for a five year old.  Both children were going and I didn't want to be alone - and I ADORE he little boy.  His name is Aiden.  He's the one that let me wear his superhero cape when I had my head shaved.  In fact, I was emotional last night and started crying telling his parents that I love Aiden so much.  He brings great joy to my life.  I relaxed and just took in the energy of all the beautiful children at the party.

Olivia and I watched True Grit when we got home.  I want to win this battle with my own sheet determination and grit.  It was good.  I nodded off a few ties, but LOVED it.

I am trying to think of a way to visualize the chemo drugs killing the cancer.  I wish I had something profound and beautiful I visualize, but I think of Pac Man chomping away at them.  Wocka, wocka, wocka!  Funny, huh?!

So, now it's time to drink some hot tea and pack my bag for the Cancer Center.  Treatment #1 coming in a few hours.  My Sissy, Conor, and Olivia are going with me.  One hour of education and then 1.5-2 hours of chemo. I'm ready to get started and allow the medicine to kill the cancer cells in my body!

My head is now bald - July 30, 2011

Olivia made the 1st cut! I'm wearing a superhero cape from Aiden!

Sis going to town.

Conor - big cuts!

Sarah looks like a hairdresser!

Jen and Sis/Andrea.

Stripes on top!

Ellie.

Dad made me cry.  

It's all gone!

Emotional.

Love my Sister!

New Hat!

Beautiful Olivia.

D & B

Bonnie & Conor

My Sissy's BLING!

Much Love.

Big group hug.  Blessed by love.

Saved some hair & a kiss!

It's Just Hair

Hello to all!  Well, last night family and friends gathered at our friends' home...and shaved my head.  Yes, there was a chance (slim) that I may not lose my hair, but I decided after my diagnosis I would be proactive and just go for it.  On MY terms.  Thanks Charles and Jen for letting us converge at your house!

Bon-Bon and Conor - thanks for videotaping.  Dad and Olivia, thanks for taking such great pics.  And to everyone else, THANK YOU for being on my "team."  Almost everyone took turns and used scissors or the electric razor and shaved my hair.  There was much laughter and a few tears here and there.

I got a few wraps from my sis and hats and goodies from Dad and Miss Ellie.  Thank you!  I'm wearing a wrap right now because my head is cold!  It was quite a shocker looking in the mirror this morning.  I wore a wrap to church.  I shed quite a few tears at church while the Worship Team was playing.  The songs were uplifting and wonderful, but it just got the tears going!  I am thankful to be going to this church.  I received two gifts this morning.  Tori made me a great pink hair band with a crocheted pink ribbon (thank you, Tori) and the Cast On Ministry ladies made me a beautiful turquoise shawl.  It's beautiful!

Here's a video of my hair shaving experience.  At one point I had a mohawk and then a modified mohawk with stripes, but this is the end of the adventure and a group hug afterwards!

Tomorrow I have to be at the hospital at 8:15 am for the portacath surgery and Tuesday I report to the Cancer Center at 9 am.

GREAT Story!

My friend Stephanie sent this to me!! LOVE, LOVE, LOVE it!!!

Appt with Surgeon

I met with the surgeon today to get my stitches out and have her check the lump I'm concerned about.  She walked in and said "stop looking for lumps, let's just get the port placed in your chest on Monday and get you started on chemo on Tuesday."  I said, "I can't help but worry about new lumps," and she said me she wasn't dismissing my concern, we just need to get chemo started.  She assured me that the sensitivity and issues in my arm are completely normal.  To keep moving it and working it to get mobility back.  The last thing she said was, "no cold, no infection before Monday," and I said "and no new lumps."  She laughed.  I really like her.

Oh, the stitches....the sutures in my axillary incision were removed as I gritted my teeth and imagined chemo would be tougher.  The sutures about an two inches below, where she did the lumpectomy, are still in place.  The WONDERFUL nurse said the knots were too deep to get a good grip on them.  She tried and OUCH. So, they will take them out during my surgery on Monday.  I'm good with that.  A little Versed and Phenergren to ease the pain first and zip them right out!  

I'm a little freaked out about the port placement.  I'm glad to have that term "placement" in my vocabulary now related to the port.  I kept thinking of it being installed or inserted and felt more like a piece of machinery.  Placement sounds better.  The surgeon gave me a better idea of what will happen.  She will place a "portacath" into my subclavian artery just below my clavicle, or collar bone.  She said if she has a hard time placing it in the subclavian she might have to make an incision in my neck to get to my jugular vein.  All of my anatomy and physiology classes are paying off!  I'm so thankful to have a degree in health education and public health!  So, my son, Conor thinks the portacath sounds like Robert Downey Jr.'s character in Iron Man.  He had that white glowing "port" in his chest that made him so strong.  Conor said I need to get the DNA of Chuck Norris, Samuel L. Jackson, and Morgan Freeman to kick cancer's butt.  I loved that, but I'm thinking about DNA from strong women, like Martina Navratilova (athletic, BC survivor), Sheryl Crow (I wish I could sing, BC survivor), and Cokie Roberts (news anchor, BC survivor).  Strong and smart women.  I also thought about Wonder Woman, the Bionic Woman, and Mrs. Incredible.  Superhero women.  Real women are the better role models, but I loved the Bionic Woman when I was little!

Now, it's time to meditate, and try to quiet my mind...

Lump 7/26/2011

My memory is a bit scattered lately, but I think I wrote last week about finding a lump in my axilla/armpit.  I had it checked and it was thought to be scar tissue from the July 7th surgery.

Luckily, the surgeon's office called me late this afternoon to see how I was doing.  If I was doing okay, the surgeon was suggesting I wait to have the stitches taken out on Monday when I have surgery to have the port placed by my clavicle.  I voiced my concern about my lump and the woman said to just keep the appointment tomorrow.  She said it's possible the surgeon would opt to biopsy the lump on Monday while I have surgery.    


Tonight when I got home and changed into something more comfortable, I looked in the mirror and I can see the lump.  It just seems too big and yes, I'm worried.  I guess for the rest of my life any time I find a lump it's something to be concerned about and reason to have it checked right away. I'm thankful I will see the surgeon tomorrow.  


While I'm extremely anxious about starting chemotherapy next week, I hope that this issue doesn't keep me from starting that treatment.  I want chemo to kill the cancerous cells.  My sister asked me today "what exactly does chemotherapy do?"  Very good question!  (I will get to radiation later in my treatment.)


According to the National Cancer Institute, "Chemotherapy works by destroying cancer cells; unfortunately, it cannot tell the difference between a cancer cell and some healthy cells. So chemotherapy eliminates not only the fast-growing cancer cells but also other fast-growing cells in your body, including hair and blood cells."*


I've had what is known as adjuvant therapy.  The tumor and cancerous lymph nodes were removed prior to starting chemotherapy and radiation.  In some instances, people have neoadjuvant therapy.  Chemotherapy is started first and the remaining cancer is surgically removed after chemotherapy has been completed.  


Enough stressing about the new "development" under my arm!  On to positive thoughts!


I have had visits from friends and family lately that have been so UPLIFTING!  Thank you!  I now have a new way of thinking when I wake up in the morning, thanks to my sister, Andrea. I told her it's still surreal that I have cancer.  I wake up every morning and have maybe a minute of peace and then it hits me again...I have cancer.  One cancer survivor I know said you never really get over that .  But, my sister said every morning I need to wake up and think something like "this is the day the cancer is getting smaller."  A positive affirmation the cancer will go AWAY.  


I also had a wonderful visit with my Dad last night on the phone.  While we are hoping for the BEST possible outcome, he offered to move back Pocatello and help take care of me/Michael.  (For those of you who are new to the site, my husband is a soldier and has a brain injury from bomb blasts in Iraq.)  That meant the world to me.  Thanks, Dad and Ellie.


Off to listen to make some dinner and meditate before going to bed! 


*Chemotherapy and you. National Cancer Institute. Updated May 2007. NIH Publication No. 07—7156. http://www.cancer.gov/cancertopics/chemotherapy—and—you.pdf. Accessed May 12, 2010.

Lymph nodes, lymph edema, and laughter.

Recently, I read an article on preventing lymphedema.  After having an axillary node dissection to remove cancerous lymph nodes and those surrounding them in my left armpit I needed additional education on the subject.  Lymph nodes are part of the immune system.  They are found throughout the entire body.  Because many were removed from my left axilla I need to take certain precautions to avoid infection and lymphedema (swelling in the arm).

The biggest impact to me thus far is that I cannot carry a purse on my left arm any longer.  And, I can't lift heavy things with that arm.  Those who know me well know I LOVE purses and bags.  I often take 2-3 to work with me.  After I got my cancer diagnosis, I purchased some office supplies as my mobile cancer command center to keep track of important documents, and yes, I bought a new bag for the occasion (much to my husband's dismay).  I would estimate that on some occasions my purse approaches the 20 pound mark.  I now am trying to scale down to smaller purses.  Not an easy thing for me. AT ALL.

I digress....but the purse thing is a life changer for me too!

So, other suggestions were to meant to be precautions to reduce the risk of cuts, hence reducing the chance of infection.  One suggestion was to use an electric razor in the axilla/armpit so as not to cut one's self.  I bought one yesterday.  And, I proceeded to use it this morning because even though I'll be losing all of my hair in the coming weeks, I needed to shave.

I should preface this part by saying I am now 16 days post-surgery and still have stitches in my armpit and the area where lumpectomy was done....

When I shaved my armpit I wasn't really thinking and I zipped one of my stitches right off!  Yes, that is par for the course for me.  Not as painful as when my drain tube got caught on the door knob, but typical clutzy Denise.  I hope you're laughing.  I certainly did.  But then, I realized that Dr. H is going to have to dig to get the knot and cut the stitches out.  Major blunder on my part!  I'm sure the surgeon will find it fascinating when I see her on Wednesday!

In Need of Rest

The last few days have been a whirlwind.  Appointment with Dr. R receiving more information on TNBC and CUP.  The dentist appointment created enough stress that I now have a cold sore.  I've been watching every stage of the Tour de France so I'm thinking of it as a mini-Alp.  It hurts.  I'm surprised I haven't had one before now based on the stress I've been under the past month.

Yesterday I awakened at 3:30 a.m. and couldn't get back to sleep.  I ended up working an 11 hour day.  I got in a "zone" and was really rallying to get some paperwork done.  There were minutes that went by that I didn't think to myself, "I have cancer."  It was so good to have a brief respite from "it."  I love what I do!

Conor is in Utah for his Army Reserves drill weekend.  He's a part of the same unit Michael was with the second time he was deployed.  And, traveled yesterday for equipment to the unit Michael was with the first time he was deployed.  He even found of a photo of his Michael at the unit.  Cool.

Olivia and I had dinner and enjoyed many laughs.  Like the kind of laughs that take you over and are uncontrollable.  Tears rolling down your face.  Bill Engvall's "dork fish" had something to do with it, huh, Olivia.  <3

Then, I watched FIVE hours of the Tour de France.  Michael and I have been watching it for 23 years, and I think I watched it at a younger age when Greg Lemond was racing for the United States.  So, I have a history with the TdF. It was an amazing stage yesterday.  And, it inspired me.

As a runner, I have tried to challenge myself in training and creating goals for myself.  I ran a half-marathon last year, and have often entertained the thought of running a full marathon. Well, I now have the vision in my mind that I'm running a cancer marathon.  The journey will not be a sprint, but a marathon.  I thoroughly enjoy watching not only the riders, but the spectators at the Tour.  During the mountain stages when the riders ride at a slower pace because of the 10% grades, spectators from all walks of life try to run next to the riders.  Last night we saw a gentleman wearing a bikini sprinting next to riders.  It scarred Olivia for life. I watched it twice.  A security guard actually tackled the rambunctious fan because he was too close to the fans. It's the first time I've seen that in a tour.  In the last week, Michael has said I need to get better and beat cancer so we can go to the Tour.  It's been a dream of ours for a long time.

I also had a friend this week reference the challenges our family has gone through have been akin to reaching the summit of Mt. Everest.  I have been thinking of that visual as well.  Climbing Mt. Everest.  Both are great visuals I can use while meditating.

Speaking of meditating.  I received a CD this week on Meditation for Optimal Health.  It is FANTASTIC.  Many of you know I am a complete geek.  Can I just listen to the opening explanations by Andrew Weil and John Caobt Zinn?  No, I had to take notes.  See, I'm a goober.  But, I LOVE it!  The mind/body/spirit connection is SO critical to health.  I think I had somewhat disconnected from mind/body health during our challenges with Michael's brain injury.  On the CD they referenced meditation also as a marathon, not a sprint!  A theme the last few days for me.

I'm going to shave my head a few days before I start chemo.  Being proactive.  I want to do it before it starts falling out.  While I'm still recovering from surgery, I don't feel great, but I don't feel "sick."  I want to shave my head before I do feel sick from chemo treatments (I'm visualizing health and breezing through chemo, but know it may get ugly), and take in every moment of the experience.  I haven't been bald since I was an infant.  My sister had a beautiful noggin when she shaved it years ago, I hope mine looks as good!  

Honestly, I'm down today.  I'm not going to be UP every day.  I'm sure it has to do with being tired.  I'm now nine days away from my first chemo treatment.  I can't put on a brave face every day.  Especially when tired.  It's okay.

Note to self:  Rest and relaxation are needed.  Be good to yourself and feel at peace before starting chemo.  Breathe in and breathe out.  Be forgiving of yourself.  Enjoy every little thing.  Be grateful.  For every thing - big and small.  Pamper yourself.