Happy Halloween

Happy Halloween!  I decided to take advantage of my lack of hair and I went shopping for tattoos to plaster on my slick bald head and saw the fake snake tattoos.  I thought they were perfect to be Bald Medusa for Halloween!  I had another funny moment when I was buying them.  I was wearing a nice hot pink suede jacket and the woman asked me if I'm a survivor and if I shaved my head for Halloween.  I was more ready for a strange comment (this time) and told her I'm currently a chemo patient!  I told her I don't plan on having this look again and told her about my Medusa idea.  She loved that idea.

I'm a bald Medusa!  Happy Halloween!

Slithering snakes!  

I sported my new look at a great Halloween party on Saturday night, to work today, and went to dinner tonight with family.  It was fun and created some great memories for me while being bald!  I made the most of it today!

I haven't always been a big fan of Halloween. When I was in kindergarten, an older student at my school (this was in Wisconsin) was kidnapped and murdered on Halloween.  The state of Wisconsin changed legislation and children weren't allowed to trick-or-treat in the dark after that for quite some time.  After that I also had dog-tag with my name and address on it.  I had tucked those memories deeply away until a few years ago and a criminal investigation show brought it all back.  I called my Mom and talked with her about Lisa's death. My Mom confirmed some of my memories and also shared with me that she and my father knew the man.  I Googled it and found the man didn't spend much time in jail.  Such a tragedy.  

Today put new and more happy memories as I walked around work and showed people my "costume." 

But, I also have had deeper thoughts about fear today as well.  Cancer is scary.  I've written about my thoughts and feelings to this point, and again, I strive to be honest with my feelings.  Just after my last chemo session I went to my accupuncturist for a session, and for some reason, I was feeling quite emotional and in turmoil.  When he asked me how I am doing - I broke down in tears.  I haven't shed many tears since my diagnosis.  I told him that I am very afraid that I'm not going to make it through this.  And maybe that's why I've been alluding to having such a hard time in my last posts and for some reason I was able to voice those feelings to him.  He said he's treated many cancer patients and they have voiced the same fears.  

I shared my feelings with my husband, my sister, and a great friend over the weekend.  They were supportive and understanding.  They didn't dismiss me and say it's all going to be "fine."  That meant a lot to me.  Some days I'm not sure it's going to be fine.

You know how something feels better after you get it off your chest (pun intended, ha ha)?  Well, I want to be completely honest about my feelings so here goes...

• Triple-Negative Breast Cancer is aggressive.  My oncologist said TBNC is the most aggressive form of breast cancer.  
• The tumor removed from my breast was not found to have breast cancer cells. This is typically also called "Cancer of Unknown Primary Source."  Or CUP for short.  So, it could be the cancer is somewhere else and wasn't found on the PET scan.
• What was found in the PET scan - three of the lymph nodes in my armpit were cancerous, showing that it is aggressive and had spread quickly.  
• I have the genetic mutation for BRCA2.  That increases the risk for other types of cancer.  Bummer.
• The risk of recurrence is up to 30% and that's just to high for my liking.  And if it does show up it typically does so in the brain, liver, or lungs.  Bigger bummer. 

So, those are my biggest fears at the moment.  I'm not thrilled about my chemo session tomorrow either, but after tomorrow I only have ONE chemo session left. That is good and happy news!  

I shared these thoughts with a 16-year breast cancer survivor today and she told me to "cancel" and "delete" those thoughts.  I like that concept and plan to use it.  Maybe, "cut, paste, and delete" those thoughts into another universe.  I'm just venting about my fears.  I pray all of the treatments I'm enduring are successful.  I just have these occasional thoughts.  I'm sure it's normal.  

____________________________

One more final note.

Last Friday at work we had a meeting with the staff from the entire health department.  That encompasses an eight county region in southeastern Idaho.  GREAT people.  Well, I've mentioned, they have been wearing pink for the last few months to support me and to raise awareness about breast cancer.  On Friday we were together for teambuilding, and at one point the Director asked everyone wearing pink to stand up.  I was in the very back of the room and was surprised when almost the entire room stood!  The Director asked, "and why are we wearing pink today?"  Someone yelled, "because we love Denise!"  At that point my tears freely fell again.  

I said thank you then, but I'm not sure everyone heard me during that moment.  So, for my co-workers that follow my ramblings...I want to send you a heartfelt THANK YOU.  I am blessed to know each of you.  I'm beyond grateful to you for your support.  

The Rigors of Taxol

My last post described my deep depression I've been dealing with of late.  At that time my chemotherapy side effects had not started yet.  When they did, I was struck with bone pain with a vengeance.  I was confined to bed.  Michael called the cancer center for me to explain my severe pain and the current medication wasn't helping at all.  The oncologist wrote a prescription that Michael had to pick up and get filled for me.  I hesitate to reveal what the medication is, but he prescribed morphine for the pain.  

I believe medications are useful and am thankful to have them, but to take such a strong medication goes against my nature.  It makes me nervous - but Michael pointed out the oncologist knows what he's doing and they don't want me to suffer while I'm undergoing my treatments.  

The first evening, once I'd taken two dose of the medication I didn't feel well, and I thought I was going to be sick, so I headed to the bathroom and I made it almost to the bathroom  - and fainted.  I saw major stars and they weren't Hollywood stars.  Then, I was so weak I didn't, or couldn't get up by myself.  I stayed there for a while and then Michael practically carried me to bed.  I was drenched in sweat. I have volcanic hotflashes that cause beads of sweat accumulate all over my pretty bald head.  

I'm more than happy to say the bone pain has diminished quite a bit.  I have zings of pain in my pelvic bones often.  I'm unhappy because I now have neuropathy in my hands and feet. I knew it was a possible side effect from the Taxol and I'd hoped I would be one of the lucky ones to evade neuropathy.  It's painful too.  

The rigors of chemo are akin to nothing I've been through.  I think we each envision how hard it would be.  My visions didn't come close to how it really is.  I'm extremely nervous for the final two rounds.  I have another round in five days.  Last time I was nauseated right before we started the IV infusions.  My body has a very clear memory of what's about to come.  The mind/body connection during chemotherapy is incredibly strong.  Nausea to chemo is like a dog bone for Pavlov's dogs. 

There you have it.  Not fun.  But, I look to the bright side.  If I'm this sick then the chemo is most certainly killing the cancerous cells!  I'm a chemo warrior.  

Done with Sixth Chemo

I had my sixth chemotherapy session on Tuesday.  It was my first session with Michael home.  It was very comforting to have him with me.  We had a brief visit with the P.A. before starting chemo.  We discussed my decision to have an oophorectomy and bi-lateral mastectomy.  I could have the oophorectomy in the 4-6 weeks between chemo and radiation.  There are also some decisions to be made about my bi-lateral mastectomy prior to starting radiation.  She also asked me if chemo has put me into menopause.  That answer is YES.  Perhaps that is why I'm feeling rather depressed and overwhelmed today.  I also talked with her about how excruciating the bone pain was with the last round.  We decided to nix the Neulasta shot this round and see if it helps reduce the pain - and hope my white blood cell counts stay in the healthy range and I don't get sick.  And, it's a good thing we're trying to go without it.  I got the bill for my treatments for the month of September and the price of the Neulasta injection went up from the August billing.  It went from $12,387 to $13,497!!!  Goodness, why in the world would it increase that much in one month?  And, I  got two injections in September.  

Next, we then moved to the chemo suite.  It was my second round of Taxol.  After about 15-20 minutes I had a slight adverse reaction to it.  I was listening to Michael and my friend Carol talking when suddenly I felt a strange sensation in my chest.  It felt like a fog was setting in.  Then, I began to have difficulty breathing.  I waited for about a minute and starting waving at Michael and Carol and asked them to get the nurse.  As I struggled to breathe, she immediately stopped the Taxol infusion and took my blood pressure.  It was high, especially my diastolic pressure.  I just focused on breathing and worked to calm myself down so we could restart the infusion.  We restarted it about 45 minutes later.  Once sure I wasn't going to have any other problems, I took a nap because the combination of Zofran, Ativan, and Benadryl makes me very tired.  We were there for a total of seven hours.  

I'm battling extreme fatigue now.  Some bone pain.  It appears as though my friend "thrush" is making another appearance.  I actually have signs of thrush on my gums, which has been there for about a week.  And, I'm quite depressed.  Maybe it's the doldrums of chemotherapy.  I only have two chemo sessions left.  Then time off to heal and then start radiation.  

I can't help but wonder if the poison being infused into my body every two weeks is killing the cancerous cells?  Will I have a recurrence?  There is a 30% chance it will return in my lungs, liver, or brain.  I hated statistics while working in my master's degree and I don't like these statistics at all.  Being BRCA2+ also increases my chances of other types of cancer.  True to my nature, I have been reading scientific articles that are coming out regarding triple-negative breast cancer and quite frankly, it's upsetting.  I know, many of you think I should quit reading these articles.  But, I'm looking for good news in these articles!  Sifting through them for new treatments or studies that have a glimmer of hope.  

I know a lot of the fight is mental.  A positive attitude.  A will to live.  I certainly have that.  I want to see my son and daughter finish college, get married, and have successful careers.  I want to grow old with Michael.  I want to start running again.  Watch the changing seasons.  Autumn is my favorite season and I feel like I'm missing this fall because I'm always resting and/or sleeping.  

Today is just one of those down days.  It has to be normal for someone living in the shadow of cancer.  

Michael's Home!!

I am happy to share with you that Michael has returned from the Brain Injury Center at Casa Colina!  He flew into our airport at 6 p.m. last night.  KPVI news and the Idaho State Journal were there to talk with us.

Sadly, Conor had to work at Mama Inez and couldn't find anyone to cover his shift.  But, we went there straight from the airport so Michael could see him.  We had dinner there with our WONDERFUL neighbors, Mike and Linda, and just were in amazement to be back together again.

I was quite anxious for Michael to see me without hair, but he says he loves it.  One of my friends from work said we are the "baldsey twins."  I love that Dana!!  :)

Michael told the reporters how difficult it was to be at Casa Colina knowing I was struggling here at home and that he's happy to be here now so he can take care of me.  It's a role reversal because I've been his caregiver after his major surgeries.  Really, we'll just be taking care of one another now.  "In sickness and in health...."

Michael's Homecoming  from KPVI.  Thank you, Logan.

Mike Farnworth from the Idaho State Journal also did a great story on the homecoming.  Thanks, Mike!

Michael and I are going to rest today.  My back spasms have returned with vengence.  I joke that they really feel like contractions and I should time how far apart they are.  I even try to use Lamaze breathing to get through the pain, but most times it's so severe that breathing is difficult.  So, off to rest and spend time with Michael.

Chemo #5 difficulties

On October 4, 2011, I had my fifth chemotherapy treatment.  It was my first round with Taxol.  I was given the usual pre-chemo cocktail of Emend, Dexamethazone, Zofran, and Ativan.  This time I also received Benadryl and Pepcid to counteract allergic reactions that can happen with Taxol.  The reactions occur not from the Taxol itself, but the liquid the Taxol is suspended in.  I didn't have any reactions - but I did get very looped and groggy from the Benadryl, Zofran, and Ativan combination.  I had several wonderful visitors and finally told Jennifer and Sarah that I needed to drift off in sleep for a while.  We were there a total of six hours!  

I went back 24 hours later and received my Neulasta shot.  Yes, the $12,387 shot.  Fatigue had already set in. Nausea, not so much!  Thank goodness.  I went to an accupuncturist on Thursday to counteract some of the side effects.  My chief complaints were muscle and bone pain.  It was relaxing.  But, that evening, the bone and muscle pain were excruciating.  I was up most of the evening.  I called the cancer center on Friday morning and the oncologist wrote a prescription for a stronger pain med.  Barely able to walk, a friend picked up the script and delivered it to the house.  THANK YOU.  It takes the edge off, but barely.  It honestly feels like my bones are breaking.  My pelvic bones, my femur, tibia, and ankle bones.  I also have severe abdominal pains.  These are all listed as side effects for Taxol and Neulasta.  

Other side effects I'm having are extreme hot flashes and thrush, again.  I would classify the hot flashes more as a volcanic eruption.  My scalp gets SO HOT.  Beads of sweat drip off my head.  I have them during the day and night.  I'm fairly sure I'll have to replace our pillows once I'm done with treatment because they get soaked at night.  And then, freezing cold.  Not much sleeping of late.  

Still struggling, I called the oncologist on-call Saturday and explained the pain I'm experiencing.  He asked my age.  When I told him, he said it's likely my bone marrow is really mounting a strong fight to develop new blood cells and that is what is causing the pain.  He suggested I also take Ibuprofen with the narcotic medication.  

Conor and Olivia have been great.  Conor has made countless trips to the grocery store for me.  Others check on me daily knowing this round has been the hardest of all.  It makes me wonder what the next round will be like.  

October 2, 2011 - Miscellaneous Thoughts

Some miscellaneous thoughts today.  I don't write as often as I did right after my diagnosis because I'm simply not feeling well.  Here goes...

Today is Sunday, October 2, 2011.  It is LIVESTRONG day.  The fifteenth anniversary of Lance Armstrong's cancer diagnosis.  I'll be wearing my yellow LIVESTRONG t-shirt today.  He is an amazing advocate for cancer research, care, advocacy, and so much more.  I contacted the Lance Armstrong Foundation and an advocate contacted me personally to speak about my diagnosis, and provided me with resources.  Thank you, Lance and LAF.

As I write this, I'm just turning on football and am happy to see all of the coaches, referees, football players, cheerleaders, and fans wearing pink to acknowledge Breast Cancer Awareness Month.  It's the 25th anniversary of National Breast Cancer Awareness Month.  I love it.  Yesterday, at the Idaho State University homecoming game there were even ISU players with hot pink gear on.  It was awesome.  ISU lost, but put up a great fight.  It was exciting, great to be in public, and I had a great time with Bonnie and Essy!  

Also remember it's Domestic Violence Awareness month.  Here is a great article about breast cancer and domestic violence awareness month. Awareness is Strength: Breast Cancer and Domestic Violence  Just for you, Sarah.  So proud of the work you and your staff do for southeastern Idaho victims of Domestic Violence.  If you are in SE Idaho and needs services related to domestic violence, you can contact Family Services Alliance.  

So, I had a rough week.  I was only able to work 10 hours.  That is upsetting to me.  My major complaints are bone pain (mainly in my pelvic bones and OUCH), the dreaded muscle spasms in my back, and FATIGUE.  One day after being at work for two hours, I collapsed in my kitchen after hauling in a few bags and my purse from my car.  Not the way I'm used to my body reacting.   I know it won't be like this for long, but it is still frustrating nonetheless.  Tuesday...chemo...anxiety about it already.  It is my first Taxol treatment.  It has to be infused very slowly in order to avoid adverse reactions.  

But, on to some good things that happened this week.  Some good, some bad.  The good first!  Most importantly, they didn't have anything to do with cancer!  

1. I was contacted by Michael's unit in Utah.  They are nominating me to go to Washington, D.C. to speak at the Congressional Military Family Caucus Summit to speak about my husbands injury and the difficulties we've encountered navigating his care.  If I do somehow get the nomination, I would go to D.C. at the end of this month and be speaking to members of Congress and high ranking officials from the Pentagon.  Wow! It would be on my non-chemo week or I wouldn't consider it.  We'll see.  I hope to find out soon if I'm going or not. 
2. I am a contributing author to Physician Practice Management, 2nd Edition, Dr. Lawrence L. Woper, and I was contacted by the publisher this week.  I worked on a chapter about Disaster Preparedness and am the lead author of the chapter with a group of people from around the country.  It is set to be published in May 2012.  They were requesting my bio for the book.  Too cool. 
3. I went to see my daughter perform in a halftime performance called "Extravaganza."  It is done every year by junior and high school students to acknowledge our nation's veterans.  It was AWESOME.
4. I went to ISU's homecoming parade and game.  I got to see Conor perform in the marching band for the first time.  Today is the day after and I'm exhausted - but it was worth it.  
5. Olivia performed in Utah at a marching band competition and they took 2nd place.  My Dad and Ellen went and supported her and Dad took photos!  Can't wait to see them. 
6. Michael is coming home soon!!!  I thought he would be home next week, but I've decided it will likely be the next week. Things related to his discharge typically take longer than I want.
1. Unfortunately, Michael was diagnosed with what I think is likely considered severe sleep apnea.  When on his back he stopped breathing 57 times in an hour for more than 10 seconds each time.  That's almost once a minute.  He will be fitted this week for a C-Pap machine.  He's upset about it, but I think it will help him a great deal.  Perhaps his cataplexy will go away.
2. Equally disappointing, he went to UCLA and met with the neurosurgeon.  He said he does believe Michael continues to have a CSF (cerebrospinal fluid) leak, based on his signs and symptoms (PAIN).  But, he doesn't want to perform another major brain surgery at this point.  He wants to wait until he leaks more fluid.  We were hoping for a surgery to perform a miracle for him. 
7. Michael is coming home.  I know, I already said that, but I'm so excited about it.  I haven't seen him since my breast cancer diagnosis.  I've missed him so much.  I'm thrilled he'll be here to make some of Conor and Olivia's performances.  He didn't see any of Olivia's performances last year and she was devastated. 

I'm heading to see the movie 50/50 today.  Looking forward to it.  I have something in common with it.  The oncologist said without chemo and radiation, my chances were 50/50 as well.  It's getting great reviews.  I'll let you know my thoughts on it later!