Feeling Hopeful! With a Few Minor Hitches.

Hello blog followers! Let me begin by showing my HAIR! It's growing pretty fast!

Hair. Wonderful Hair!

Today is President's Day Holiday. I cherished sleeping in and not having to make my radiation appointment at 11:15 am. That time will be ingrained in my memory forever. Good news though! I only have SIX radiotherapy treatments left. I will be done next Tuesday, February 28th. Yea! I'm surprised at how well my skin is tolerating it and I've lucked out with only a slight radiation rash. The area is itchy, my skin is pink, and have new freckles where they are targeting my radiation. I am struggling with diminished range of motion and have started a better routine to break the adhesions forming in scar tissue from the mastectomy. Overall, the hardest part has been fatigue. I typically work a few hours in the morning, go to radiation, and go home to take a nap. 

I am happy to report my depression has lifted! Yes, a few changes to medications and my diet and I am feeling HAPPY and HOPEFUL. When I meet with the Radiation Oncologist tomorrow I'm going to ask him how I can refer to my status: 1) I had cancer; or 2) I am in remission. There is still the question of the nodule in my lung. They will do a CT scan in the next month or so to see if it has grown. The important thing is that I'm ready to move from being treated for cancer to being a survivor. 

That being said, I must have a hysterectomy as soon as possible. It will likely be the second or third week of March. While it's not something I'm looking forward to, it is something they insist must be done soon because of my BRCA2+ status. It puts me at greater risk for ovarian cancer.  Other cancers as well, but I'm not dwelling on them at this time.

Here's a small update about my mastectomy recovery. I still have pain from the double mastectomy and am adjusting to my new look. I am putting off reconstruction surgery for a while. The reasons? I still have pain. I finally had a realization about the pain. I read about many women who reported having phantom pain after a mastectomy. I believe that is likely what is happening to me. It is hard to describe the feeling. It feels like a burning pain. I think they also refer to it as Post-Mastectomy Pain Syndrome. I will talk with the doctor further about it tomorrow. It's quite uncomfortable. 

The "hitches" I'm refer to in the title of the blog are related to vision changes, tinnitis, dizziness, and psoriatic arthritis. The radiation oncologist said to give myself a few months to see if the changes in my vision, tinnitis (ringing in the ears), and dizziness diminish after my treatments. He said he cannot necessarily say these issues are related to chemotherapy, but they could be. I'm frustrated with my vision changes because I have to take my glasses (I'm nearsighted) off to read small print now. 

I was diagnosed with psoriatic arthritis about five years ago. I was nearly crippling at the time. I gave myself injections of Enbrel and it went into remission in 2008. Because I went through chemotherapy my immune system was non-existent. Because my immune system is starting to wake up - the psoriatic arthritis is waking up too. A few weeks ago, I saw an arthritis specialist and an ultrasound was performed on my left hand and foot and I have erosion and effusion between many joints. Psoriatic arthritis also affects the ends of tendons and ligaments. I've had pain in my left achilles heel for sometime. Now I know why. It is affecting my hands, elbows, knees, and feet. The specialist did some labwork and I'll receive those results in two days. I tested positive for HLA-B27 (a marker for auto-immune diseases) five years ago. He cannot start to treat it until after I have completed radiation. As I said earlier, I've made some changes to my diet, which I'm hoping will alleviate the pain and maybe I won't have to go on arthritis medication.

I've been watching documentaries about nutrition over the last month.  Forks Over Knives, Food Matters, and Fat, Sick, and Nearly Dead.  I also highly recommend Crazy Sexy Cancer. Each one had the same theme. Eating fresh fruits and vegetables is extremely healthy for you. Of course, I knew this already. It's recommended that we eat fruits and vegetables in our daily diet. I just read the American Cancer Society's recommendation is at least 2 and 1/2 cups per day. The documentaries highlight the benefits of a raw food diet. My friends and family have heard about my new diet approach for the past two weeks. The most inspirational movies to me were Crazy Sexy Cancer and Fat, Sick, and Nearly Dead.

Chris Carr, from Crazy Sexy Cancer, has inoperable and untreatable sarcoma in her lungs. She has kept it at bay by juicing raw fruits and vegetables, among other lifestyle changes that have been beneficial for her. Joe Cross, from Fat, Sick, and Nearly Dead, flew from Australia to New York for a 60 day juice fast. He stayed in New York for the first 30 days and traveled from New York to San Diego the remaining 30 days. His starting weight was over 300 pounds and he lost around 100 pounds in the 60 days...just drinking juiced fresh vegetables and fruits. I was so inspired by him I bought a juicer and stocked up on fruits and veggies two days later and have been drinking at least two large glasses of juice a day. I am a little OCD at times and have held myself back from the 60 day juice fast while I'm recovering from my cancer treatments. I spoke to one of my oncologists about it and he had the nutritionist at the cancer center pull together reading materials for me to read, but he said, "I'm not going to tell you that you can't eat a diet with fruits and vegetables!" 

Each movie talks about the increased energy one gains from eating a raw foods diet and I can attest to that myself. I think it's another reason why my spirits have been so much better of late. I also think it's because I'm being proactive and doing this for myself, in order to minimize the risk of a cancer recurrence. Forks Over Knives showed how several people were able to eliminate heart disease by a raw foods diet.  I wrote to Joe Cross about how much I enjoyed the documentary and how inspired I was and he wrote me back! He responded by saying he just read about how this type of diet reduces cancer risk. I am all for that! Of course, this should also be accompanied by exercise! I started walking a few weeks ago and did too much too soon. I need to start again with a modified approach! 

As I reach the milestone of completing my cancer treatments, I want to THANK my family, friends, co-workers, Chemo Angels, and anonymous people who have posted on my blog.  You have all have given me such incredible support! I have no doubt doing something like this alone would be nearly impossible. THANK YOU to each of you!!!  :) 

Soon, I'll start into the next phase of life. Whether it's in remission or as someone who "had" cancer. I will have to go to the cancer center every three months, for three years, to catch a recurrence early. There is a 30% chance it will come back. I'm focused on the 70% chance that it won't. 

From now on my life will be about eating well, exercising, spending time with family and friends, making a difference, laughing, being grateful for the little things in life, staying positive in spite of obstacles, spending time in nature, incorporating more yoga & meditation into my life, ensuring I am living in the moment, and LIVING LIFE TO THE FULLEST!

Radiation Treatments and Battling Depression

Note:  I started this blog last week and haven't been able to sum up the energy to finish it until now.  It will be a little long because a lot has happened.

On Tuesday, January 17, 2012, I had my first radiation treatment. I was not quite one month out from my double mastectomy. I thought radiation was going to be the easiest part of my journey. I met with the radiation oncologist and the staff made a "form" that I lay in so the radiation is directed where the cancer was found in my breast, in the area the cancerous lymph nodes were found, and to go up into my neck just past my collar bone.

I arrived on Tuesday at the scheduled time and the radiation (rad) tech met me at the front desk and escorted me to the radiation suite. Another tech was there and showed me the desk area where they would be watching me on monitors during my treatment. At that moment, I felt a lump in my throat and just nodded that I understood. Then they took me into a room that said "Linear Accelerator." It was the same room I'd been in days before to make the mold, but this time was different. This time I knew I would be receiving my first of 30 radiation treatments. Every day for the six weeks I have to say my name and date of birth and lay down on a table that is akin to the table one would lay on for a CT or MRI. Before the first rad treatment they needed to take some chest x-rays to make sure my heart wasn't located in a strange spot (so it doesn't get zapped). On the table, in the dark, I looked up at the machine, staying still, and I could see the reflection of my chest in the glass. I could see the six inch scar on my left side. It is still shocking and hard to look at so I focused instead on the Matrix-like green lasers that were shooting down at me from the ceiling. Again, the lump started in my throat and this time tears trickled down the sides of my face. I was surprised and embarrassedd to be so emotional at that point. Next, the rad tech came in and said the x-rays were fine and I was ready for my first treatment. It takes about five minutes.

Oh.....Last Friday, the radiation oncology nurse gave me three bottles of aloe vera gel and explained where I needed to apply the gel. She said by the end of this week I the areas being radiated will be pinkish and by the end of the 30 treatments I could have burns, blisters, and I hope not to go down that road...but I have extremely sensitive skin so it wouldn't surprise me if I did have problems with it. She asked me how I'm doing with all of this and I said my chief concern is fatigue and I just can't seem to get over it. She said "honey, it's going to take about a year, mainly because of the chemotherapy." That took my by surprise. A year. I hope not.

Mentally and physically I'm finding radiotherapy is not as easy as I thought it would be. I meet with the radiation oncologist every Monday. I was very thankful to have the opportunity to speak with him about my struggles. First off, I've lost five pounds, which normally would be a good thing, but they really don't want me losing weight right now. I can tell on the days I don't have any appetite I feel very sluggish so I'm doing my best to eat. Then, I told Dr. C of my fatigue and ultimately that I'm finding it hard to do anything at all. I sleep 12 hours a night and then as soon as I've had something to eat I want more sleep. I don't find much joy in anything.  I have dealt with depression for 20 years and this is much worse. He said he knew my Type AAA personality might have a problem with all of this the first time he met me. I am organized and I've been thrown a few surprises along the way I didn't anticipated.

I also asked him how much radiation I am receiving. He said a typical dental x-ray is about 60 rads (a dose) and the dose I'm receiving: 200 rads 5 days a week for 6 weeks.  That's a LOT!  No wonder my skin is pinking up. It helped me to understand that this is a bigger deal than I thought it would be. He also said he has seen other patients have a struggle during radiotherapy as well. People are more apt to be helpful and "there for you" when you've had surgery or are going through chemo and then stand back during radiotherapy "because it's not a big deal." He says that bothers him. It is a big deal and very hard on the body. But, the radiotherapy takes about 15 times in total and I wouldn't want to drag someone to a treatment session.  Michael has gone with me most days and has been very supportive.

Another thing I wasn't aware of is that it can take a toll on your bones. My sternum and ribs hurt terribly.  The sternum is a combination of recovering from the double mastectomy and radiation, but my lower ribs are probably just from radiation.  Ibuprofen just doesn't cut it some days. In some cases bones can crack or break.  Wow.

I have 21 treatment sessions to go.  Four weeks. I know I'll be looking back on it sooner than I expect. For now, I am trying to ensure better health by taking a better multi-vitamin, taking vitamin C, Fish Oil tablets with Omega 3's, Calcium, Vitamin D3, and my anti-depressant medication. I'm using a full-spectrum lamp because I'm not outside often and either is the sun. I did go on one walk this week to get some sun.  I walked around two blocks and it really hurt my sternum.  But I did it.  If I go to work for a few hours or to a couple of stores shopping, I am exhausted for the next 2-3 days.  I never expected that to be how this would work out!

As hard as it is to admit I am dealing with severe depression, I feel like I should be honest about it because there might be someone in a similar situation. I know I've been looking up information related to depression and breast cancer. And more information on radiotherapy. Tomorrow, I am going to meet another doctor to see if any adjustments can be made to my medications to get me through this very difficult time. And just talk about what I'm dealing with...and the other things that are affecting our family. Michael's bomb blast injuries, Conor leaving for Kuwait in May, Conor and Bonnie's baby on the way in June, and Olivia's struggles because our life has been so chaotic now since Michael's first deployment in 2005.  Ultimately, my counselor says I'm in survival mode and need to shift to self-care mode.  I'm working on that.

Teachable Moment
Here is information on depression from Fact Sheet on Depression Women's Health.Gov:
Not all people with depression have the same symptoms.  Some people might only have a few, others a lot.  How often the symptoms occur, and how long they last, is different for each person. Symptoms include:

• Feeling sad, anxious, or "empty"
• Feeling hopeless
• Loss of interest in hobbies and activities that you once enjoyed
• Decreased energy
• Difficulty staying focused, remembering, making decisions
• Sleeplessness, early morning awakening, or oversleeping and not wanting to get up
• No desire to eat and weight loss or eating to "feel better" and weight gain
• Thoughts of hurting yourself
• Thoughts of death or suicide
• Easily annoyed, bothered, or angered
• Constant physical symptoms that do not get better with treatment, such as headaches, upset stomach and pain that doesn't go away

You can get help from:  

• Family doctor
• Counselor or social worker
• Family services, social service agencies, or clergy
• Employee Assistance Programs (EAP)
• Psychologists and Physicians

There you have it.  Another bump in the marathon.  It's actually more like I've stopped running and am sleeping in a tent during the marathon while runners pass me by.  I'll get back on track and get running again, very soon.  

If Tears Could be Turned into Snow...

This past week has been quite difficult and my tears flowed freely.  Unbelievably, it's January 11th and we have very little snow in southeastern Idaho.  The other day it occurred to me if my tears could be converted to snowflakes the ski resorts in the area would be in great shape.  I'm not a skier (I've tried and am typically injured in some fashion, but I LOVE to drive in the snow and marvel at its beauty).  

My double mastectomy was three weeks ago.  I still have pain, which is normal.  I have been told it takes two months to completely heal.  No one told me how long it takes to heal emotionally from the surgery.  I still struggle with how I look.  Each incision is about 6 inches long.  Ghastly.  But, I remind myself continually it was to help save my life.  It didn't help when I took another fall last week at the Huntsman in SLC at my final post-op check up.  A nurse weighed me, took my vitals, and when I stood up, I just started to tip over and caught myself on the arms of the scale before I completely hit the ground.  I was mortified.  They wanted to put me into a wheelchair but I refused.  The next day I realized I caught myself with my ribs - and they are still sore as well.  

There are two lines of thought about my four falls.  One is the pain medication and the second is my balance has been significantly shifted because of the mastectomy.  Hmmm.  Thoughts to ponder while I am more careful walking stairs and stay away from scales.  

The final appointment brought good news.  There was NO CANCER found in the pathology done on the breast tissue.  The chemotherapy did its job!  I'm very happy with this news.  VERY!  

The surgeon did have to drain fluid (called a seroma) from under my right incision.  If not drained it can cause complications so I agreed to have it done.  Before I knew it he had a large needle with one end inserted into a bottle and the other end under my incision and I looked at my dear friend Jen and told her to breathe after seeing the look on her face!  She asked quickly, "what about something to numb the area?" and the surgeon said they had cut through all of my nerve endings so there shouldn't be any pain.  There really wasn't, until we were on our trip home and it was a little sore.  However, because of the fall and draining the seroma, it was very sore the next day.  I'm amazed at how concave the area is. For a time, I thought he had done a radical mastectomy on each side because my sternum sticks out so far now, but I can flex my pectoral muscles on each side.  Now, I know why I could never really see progress while weight lifting for my pecs, too much breast tissue covering them up.  Now is a different story, but I won't be weight lifting anytime soon.  I did walk a bit the other day and it was glorious. I cried the entire time, but it was a good cry.  

Yesterday I met with a counselor at the Cancer Center and hours later went back to met with the radiation oncologist.  I made the appointment with the counselor because I am overwhelmed with my emotions.  As I said, I still am in pain, I'm having a bit of insomnia because it is hard to get comfortable, forced early menopause is wreaking havoc on my system, and I'm still fearful of the unknown.  I spoke with the radiation oncologist in the afternoon about the paperwork that indicates there is a nodule in my lung.  He is going to speak to the chemotherapy oncologist about it and we'll keep an eye on that for a change in size.  So, while I'm thrilled there was no cancer found in the pathology following my mastectomy, I'm fearful it's still lurking around.  

These are all normal feelings.  The counselor and I also talked about EXPECTATIONS I have for myself and because it's the New Year, I made goals for myself.  He said I need to lower my expectations right now.  Not in an adverse way, but I've gone through so much in the past six months it's catching up to me mentally and emotionally and I'm not going to heal and recover if I don't learn how to relax and no expect so much out of myself.  Ugh.  I understand that and know I have to in order to recover - especially because I will be starting radiation next week.  

I have another appointment this morning to have a CAT scan of my chest and upper body so they can exactly determine where the targeted radiation will go.  They will also make a form for my body to lay on so I don't move at all during radiation and cause damage to my lung or heart.  And I'll  get a couple of skin markers (he doesn't like the word tattoo) to be the pinpoint area for the radiation.  He indicated it will of course be targeted to the area of my breast where I found the original cancer, the area where the cancerous lymph nodes were found, and then near my collarbone where the subclavicular lymph nodes are found.  I will go through 30 sessions over six weeks.  I will start on next Tuesday or Wednesday.  I'm not nervous about radiation at all.  After chemo and the double mastectomy it should be a breeze. 

Below is a song by Kerrie Roberts called "Keep Breathing," and I have listened to it non-stop over the last few days.  I think it's beautiful so I wanted to share it.  

One final note, I am heading back to work after my appointment at the Cancer Center.  I'm anxious and excited all at the same time.  I'm nervous about it because I'm so tired and sore, but it's time.  There is work to be done!  I'll do the best I can and build up over time and when I'm tired I'll head home to sleep.

Here is a quote from a book I purchased called "Be Happy."  It contains quotes from numerous authors.  Today, I like this one.  "How simple it is to see all the worry in the world cannot control the future. How simple it is to see that we can only be happy now, and that there will never be a time when it is not now."  ~Gerald Jampolsky  

Post-op Update

It has been 11 days since my double mastectomy.  It seems like a year.  I am still in pain and groggy.  I have to sleep hours a day as my body tries to heal.

The morning of the surgery, Michael and I went to the University of Utah to check in at 9:30 a.m. My Dad and Ellen met us there as well as Michael's sister, Maureen. Maureen is stationed in Germany for the Air Force and had planned to come to Pocatello for Christmas. She happened to come into the SLC airport at a time that coincided with the surgery so I was able to see her before surgery, which meant a lot to me.

In pre-op a nurse walking by our room saw so many camera flashes he walked by twice to make sure there wasn't a VIP in the room. I said, "I'm not a VIP, it's my Dad taking pictures." I told the kids this story later and they said, to your Dad, you are a VIP.

The anesthesiologist came in to say hello and ask about previous surgeries and the surgeon came in. I introduced him to the members of my family. Dr. N is a very pleasant man. I appreciate it that he's talked to me personally on the phone after he spoke with the tumor board and that they all agreed surgery was required for my "elusive cancer." They allowed me a chance to say goodbye to my family, which went by so quickly, and then whisked me away to the surgery room.

I remember the oxygen mask over my face and Dr. O, the anesthesiologist, telling me to breathe deeply and then he told me they were going to give me medication to put me to sleep for the surgery. I remember waking up in post-op. I was in a lot of pain. I cried. I knew my breasts were gone. I cannot say my pain, or my loss, were the reason for the tears.

Once I was more stable, I was moved from the University of Utah to the Huntsman Cancer Institute. Mark A., it was my first ambulance ride! I told the crew that and asked if we could make an adjustment and I could be transported in the helicopter instead. At least my humor was still intact! Upon arrival at my room, my nurse and the EMT crew said there was no bed in the room. Then, they took me to another room, and that room didn't have the appropriate electrical outlets, so we were off to look for a room for me. I could hear Michael, my Dad, and Ellie around us as we tried to fine a spot for me.

Finally, tucked in my spot, I could relax. As much as you can in a hospital. I met the night nurses. They checked the two drain tubes in my chest, set up a PCA pump that I could hit every 10 minutes, or longer if I could wait. They asked if they could look at my dressings. In my research of mastectomies, I saw women after surgery and their chests were very tightly bound with dressings, so I said yes, expecting to see the same dressings they had. I had something completely different. I had two gauze strips and I could actually see the incisions on my chest. I'd informed the surgeon and team I'm allergic to steri-strips and have had issues with stitches in the past, so they used a special glue to close the incisions. The nurses said the incisions look very good. I wasn't so sure about it. To me, the left side is very concave almost as if he'd done a radical mastectomy, and on the right side it is very puckered and doesn't look good at all. Some areas are very swollen and will even out and smooth out, according to the nurses.

After this, my pain was not controlled with the PCA pump. It actually took us days to get the right combination for me to get my pain controlled. I spent three nights in the hospital. Every member of the staff at the Huntsman was very good to me and my family. I had a gorgeous view of the city from my room.

During my stay I had visits from three friends I went to Highland High School with. Lynn Kilpatrick, Penny Tippets Coleman, and Mike Taylor. It brings tears to my eyes now, tears of love and thankfulness. It amazes me friendships we started 25 years ago are still strong. I had a beautiful view of Salt Lake City from my room.

I was discharged in time to be home for Christmas. My entire family came to our house on Christmas and it was AMAZING. I am so blessed to have a supportive and loving family. I was so excited to watch the Packers play the Bears, but I couldn't stay awake. Conor kept waking me up to make sure I was okay, but I think he also wanted someone to watch the game with him.  He'd gotten me an Aaron Rodgers jersey for Christmas and I was to tired to stay awake for the game.

I had to go back to the Hunstman on December 28th to have the drain tubes removed. It hurt having them taken out, but it's great to have them out. I always had to drain them myself because Michael didn't have the stomach for it.  I threw up a few times at the hospital and even since we've been home I've thrown up a few times. When we got home from the trip to Utah on the 28th, I was a little tired and my depth perception was off, and I fell down our stairs to the basement, not once, but twice. I have to have help going up and down the stair down. And, Michael has to help me in and out of bed.

 I go back to see Dr. N next week to find out the path reports and have him take a look at the incisions. Next week I also need to contact the Portneuf Cancer Center and let them know the surgery has been done, so they can get me onto the schedule to start radiation, probably in 2 weeks or a little longer.

So, on this final day of 2011, I want to talk about resolutions. It is my MAIN New Year's Resolution to be CANCER FREE in 2012! I still have to undergo radiation, a hysterectomy, and reconstruction. After that it's my goal to regain better health, mentally and physically. I want to start slow, with walking, then move to running (5k with Pam and anyone else who wants to join us). I can't wait to start hiking up City Creek and doing yoga again. Enjoying the outdoors again.

 I will enjoy more time with my family and friends. I'll become a grandmother in 2012. Conor and Bonnie are expecting in June. A new little life for our family will be good. I will become a better cook and eat a more wholesome diet. I've received several cancer-fighting cookbooks and I fully intend to use them.  Fighting cancer is a full-time job in itself but I want to go back to my favorite full-time job - public health.

Happy New Year's to all of you! I feel like this coming year is going to be better for me and it's my hope it will be GREAT for all of us.  Remain positive.  Be Happy. Be Joyful.

The Night Before Mastectomy

Hi all. Just a quick post. I check into the University of Utah Hospital tomorrow morning at 9:30 and surgery is scheduled at 11 a.m. Michael and I are trying our best to relax. We're watching Monday Night Football, rather distracted by what is to come tomorrow. Once the surgery is complete, I will be moved and admitted to the Huntsman Cancer Institute. I will be there 1-3 days. Taking deep breaths and hoping to get a little sleep tonight. My mantra going into surgery will be peace, healing, and being cancer free in 2012. I keep thinking of those t-shirts that say "Save the Ta-Ta's." I've always loved that shirt, but I struggle with it now because I can no longer save mine. To my followers that are women. Please do your monthly self-breast exams and schedule your mammograms so you can savwe yours. If you find a lump - be PROACTIVE and get it checked. Trust your gut instinct until you are comfortable. I am SO GLAD I trusted my intuition about this cancer or I would be in a much worse predicament. Gentlemen, make sure your wife is scheduling her mammograms. And remember, men can get breast cancer as well. If you have something suspicious, get it checked. Breathing in....and breathing out...... Namaste. ~Denise

Surgery on Tuesday, December 20, 2011

It has been a little harder for me to write this blog. It's a very emotional time for me.

Last Thursday we drove back to Utah to the Huntsman Cancer Institute and I had some tests. I had a breast MRI. I was then instructed to call the next morning at 9 a.m. because Dr. N would have been done presenting my case to the tumor board.

Not wanting to appear overly anxious I waited until about 9:08 a.m. to call. The nurse said Dr. N wanted to speak to me himself. He told me, as I'd already been informed, the biopsies were benign. However, the breast MRI shows cancer remaining in my left breast. Nothing appears in my right breast. But, with BRCA2+ there is a 60-80% (depending on where you get information) I would eventually get breast cancer in the right breast as well. He said he had talked to the tumor board about my "elusive cancer" and they all agreed a double mastectomy was the appropriate action.

I'd hoped to have it on Monday at the Huntsman Cancer Institute but their surgery scheduled was already booked up. So, Dr. N. will perform the surgery on Tuesday at the University of Utah, which is right next door. I can be admitted to the U of Utah after the surgery or be admitted to the Huntsman. Initially, I said I was fine staying at the U of Utah, but I really would prefer to be at the Huntsman so I'm going to email the scheduler this evening to see if that can be arranged.

I have to call the scheduling folks to find out what time my surgery will be on Tuesday. Because I am extremely Type-A I would prefer to know the time now, but it is one of the things I'm learning through this experience, sometimes I have to chill out and let go and try to stop controlling everything.

I am still extremely tired despite the fact my last chemo was just a little over a month ago. I thought I would rebound from it quicker than I have - but I haven't been through this before so I don't have anything to measure it against. I have been able to talk to a few cancer survivors of late that said it can take a long time. One said a year and a half. I hope that is not the case for me. I'm so ready to start running again. I know it will be a while, but I'm itching to do it!

It's hard to put into words how I feel about the sugery. I'd hoped to have immediate reconstruction and that is not going to happen because I must get started with radiation a month after my surgery - pronto.

I wonder what it will feel like to wake up without breasts. I've had them since I was about 15. They nourished my children. I'm guessing the pain from the surgery will more troublesome than the loss of the breasts in the beginning. Over the weekend, I watched a few actual mastectomies on YouTube. Yes, I did. I won't be able to lift my arms for quite some time. I'll have a few drains for a week or two, I think. One video logger (vlog) said to make sure women have hoodies with a zipper to wear once discharged from the hospital. I only have a few. It's winter - what else will I wear. A t-shirt and tank top require you to lift your arms. Should be interesting.

I've made the dogs transition to sleeping in their beds on the floor over the past two weeks because I don't want them to jump on me after the surgery. The cats will be another matter. I'm guessing I'll have to lock myself in our bedroom. As I've mentioned, I really think two of them know I have cancer (they ALWAYS lay with me touching my left side while we snuggle). I just get chills when I think about them bumping me when I'm recovering.

I'm ready for the surgery. I think it will prove to be a bit of an emotional roller coaster and painful. I draw strength from knowing other women have gone through it and it is ultimately greatly decrease my chances of getting breast cancer again. Getting a double mastectomy does not ensure 100% it won't come back. It makes it about a 90% chance it won't come back. I prefer those odds. I'll increase the odds in my favor by getting a hysterectomy when I complete radiation. After that, I will see my team at the Cancer Center every 2-3 months for the first 2-3 years because triple-negative breast cancer has such a high rate of recurrence.

Again, it's a marathon, not a sprint. I think right now, I might be in the marathon medical tent to get some extra medical care to ensure I can finish the race.

I'll be "in the tent" at the hospital in Utah for 1-3 days and then off work for 2-3 weeks. I was told it will really take 2 months to heal and a woman who has a great blog about her experience (and chose to never have reconstruction said it took one entire year for the scarring to settle down and smooth out, wow!). It boggles my mind. And, my mind is reeling like a hamster going around and around in his wheel. It makes it slightly more stressful this is happening days before Christmas as well.

Okay, I need to head to bed. I've been trying to get my body really rested and prepared for the surgery. Again, hard to do right before Christmas.

Say a few prayers or send vibes out into the universe for a successful surgery on Tuesday. I'll blog again when I'm feeling up to it! Thanks, everyone!

Surgery Postponed for a Week

Hello family, friends, and followers!

Yes, I met with the surgeon at the Huntsman Cancer Institute on Thursday and he said the bottom line is that he wants to meet with the Huntsman Tumor Board this coming Thursday and talk with them about my complex case. I was quite upset with the news because I finally had accepted I was going to have the surgery and now it will be another week.

A few things did take place Wedesday/Thursday. I read through some paperwork the Cancer Center gave to me for the D.C. Trip in case I got sick and had to go to the hospital for some reason. My CT scan that was done at the beginning of November said there is a nodule in my lung. It said it may be a cyst....but I've heard that before and it was CANCER. I pointed it out to the Huntsman team I met with.

Secondly, the resident that performed a breast exam on me was concerned about a lump he found in my right breast and there was an indentation of my breast which is another warning sign of cancer. My initial cancer was in the left breast and 3 lymph nodes.

Then, Dr. N. felt the lumps in my axilla and said that he wanted an ultrasound and biopsies of them that day. He also wants me back down there next Wedneday for another MRI. He said radiologists have their own way of ordering MRI's and reading them. I'm guessing they'll review them with the tumor board in Thursday morning.

There were two radiologists that performed the ultrasound and the lead radiologist thinks the lumps are both cysts. Again, with the damn cyst diagnosis, when I almost accepted that diagnosis. If I hadn't, I would be looking at a stage III or IV cancer right nowl It's alreqdy highly aggrssive enough as it is. So, I insisted on the biopsies. Another radiologist performed three biopsies and he had an extremely difficult time getting into the lymph node/tumor/scar tissue because it was so hard. He said he was glad we were doing it and it was not a cyst or it would have popped easily with the biopsy needle and the clip which makes a poppong sound as it takes the tissue sample. I will be called on Monday or Tuesday with the biopsy results.

Then, we have to make another trip down there for the MRI on Wednesday. It's about a two and a half hour trip for those of you from other parts of the country, or the world. As long as we don't have snow on the roads it's a good drive. Snow is another matter altogether!

I did some Christmas shopping yesterday and almost dropped after the second store. Once home I was very out of breath and exhausted. At the Huntsmand my blood pressure was 149/98, which is very high for me but I attributed it to nerves. Today I went to a church service and was exhausted by the time I was dressed and ready to go. I again and extremely fatigued and short of breath. So, now I'm in bed ready for a nap. I may call the cancer center and let them know I'm not bouncing back the way I thought I would. I'm just about a month out of my last chemo session and maybe I'm expecting too much too soon, or something else is going on. I just know I again, can barely stay awake or walk a flight of stairs, or shop!! And I love Christmas shopping so that was a big bummer!!!

Oh, I just remembered one more thing. Michael and I met with an OB/GYN to her opinion on just having my ovaries and Fallopian tubes removed versus a complete hysterectomy because I am BRCA2+ and she without a doubt I need a full hysterectomy. She is concerned about other peritoneal cancers such as liver, stomach, and gall bladder cancer, even though triple-negative breast cancer typically recurs in the lungs, liver, or brain first. THAT'S why I was so upset to see the finding that there is something in my lung. She thought it would be GREAT is if they could do the double mastectomy and the hysterectomy at the same time, and I've made several phone calls and that just want haappen at this point. Maybe that can be done at the same time as my breast reconstruction. Michael asked her again, why it's so imperative I have her double mastectomy before radiation and she said, "because we want you wife to be here in five years." That made my heart skip a beat and reminded me of how aggressive this cancer is.

Thanks to all of you for your support from near and afar. I can see statistics of visits to the site and I've been excited to see viewers have looked at the site from Canada, Russis, Germany, Indonesia, and many more countries.

While I said I was ready mentally for the surgery to happen tomorrow, I have to admit the surgery scares me....I won't say to death...but I'm extremely anxious to wake with no breasts and from the photos I've seen of other women, incisions are very long. So, the postponement give me a few more days to adjust to he thought of surgery...and get additional
Christmas shopping done.

I'll post again once I know what the biopsy results are and when surgery is scheduled.

Ciao!
P.S. I found a few typos and corrected them...the others I hope can be excused because of my fatigue. Thanks!

Giving Thanks

It's a few days late, but it's never to late to discuss what we are thankful for. Even while living with cancer I am thankful for so many things. Of course, I am thankful for my fantastic family. Michael, Olivia, and Conor - you are my world. My Sissy, Mom, Dad, and Ellie, I am so thankful for you rallying with me right now. I adore each of you. To my friends, and there too many of you to mention, it has given me strength and peace to know I have so many friends sending out good vibes and prayers for me. I even see I have followers from around the world. I am thankful for that, and it's my hope I'm helping others as others have helped me.

I am also thankful for our four cats and two dogs. The dogs give me unconditional love. And two of the cats KNOW I have cancer. They will lay next to my shoulders and put their hands on my face. They seem to be comforting me. And it works. I listen to the rhythm of their purring and it often lulls me to sleep.

Speaking of sleep, it is pretty much all I've done in the past 10 days. On Thanksgiving Day, I would stay up for a few hours and be forced to lay down and sleep again. We had a wonderful family dinner together and I was asleep by 6 p.m. The next day, I slept all day to recover. Thus, I'm extremely thankful for a comfortable bed! I'm thankful for books to keep my mind sharp in between naps. I LOVE reading with a passion. I believe I would be known as a voracious bibliophile.

I'm thankful for the beautiful city I live in and the mountains surrounding Pocatello. And in those beautiful mountains are trails I will again hike once I've completed my surgeries and treatments. Trees, leaves, streaming water, butterflies, dragonflies, deer, rabbits, and fellow Pocatellans enjoying the beauty of the outdoors.

As of late, I've been thankful for honey crisp apples, chocolate, and yogurt ice cream bars. Our food on Thanksgiving was fantastic. Nourishing my body and soul.

I'm thankful I found my cancer six months ago and had the courage to insist on surgery to remove it when two physicians thought it was only a sebaceous cyst! I'm thankful for my doctors and staff at the Cancer Center. I'm thankful to be DONE with chemotherapy! It has made me extremely sick this time around. Making me even more happy I'm done!

I'm glad my oncologists are being proactive and are sending me to Salt Lake City's Huntsman Center for surgery. I have what they believe are two new cancerous lymph nodes. As of right now, I am scheduled to see the surgeon on December 8th and surgery on December 12th. I will be honest, I am scared beyond what words can say about the surgery. Scared the lymph nodes ARE cancerous and aggressive the dose-dense chemo didn't kill them. I'm also afraid to wake up without my breasts. They've been with me my entire life! They nourished my children when they were infants. Nursing Conor and Olivia was so empowering as a mother. After that, they were just a part of me. When I began running more in 2005 they became something of a hindrance than anything. I will miss them. But I am not so attached to them I will let them jeopardize my life.

In the end, I'm thankful I had breasts to feel feminine, motherly, and like a woman. At the end of this journey I will have breasts again. And a t-shirt that says, "Yes, these are fake.
My real breasts tried to kill me."

Finally, I'm thankful to be alive. Breathing in and out, in and out........

Chemo Complete, but Life Turned Upside Down

Wow, what a day. Yes, I have completed by my eighth and final chemotherapy treatment!!!! I am so thrilled to have made it.

It was actually overshadowed by what happened prior to being hooked up for the infusions. The oncologist visited with Michael and I and explained he was very happy no cancer showed up in the chest CT or MRI. In his words, "that would have been very bad."

I then explained to him I'm still very concerned about the lumps in my axilla because there are very similar in feel to the first tumor/lymph node that was found to be metastatic carcinoma. He then said he is equally concerned. He was going to dismiss me! He wanted to bring in his partner, the radiation oncologist, to get his take on the situation, because that is the next phase.

He came in to visit with Michael and I and palates the two lymph nodes and said he is very concerned. He said this is an unusual presentation and he doesn't trust anything about this cancer. What he wants to see happen, and very quickly, is a referral to a surgeon in Salt Lake City for a consult. I gave him the name of my preference, given to me buy a survivor, and he actually did his residency with him... So possibly a good connection! He wants the lymph nodes removed and biopsies AND a double mastectomy. Both doctors want this to happen once I've had three weeks to recover from my Taxol treatment and the surgery to take place between December 5th and the 15th. They want it expedited because of the aggressiveness of this cancer. That is my preference too.

What it took me a long time to comprehend as I struggled to process this news is that they don't want me to have immediate breast reconstruction. There can often be complications, and
they want to be able to get radiation started one month after that surgery has been completed.
I was hoping instead of getting two new front teeth for Christmas, I would have two cancer free breasts! That is not to be the case. I must now shift my thought process to the reality that it will likely be difficult to be without breasts, and see the resulting scars from the surgery. I'm terrified of what it will look like and how it will challenge my femininity and psyche...but it has to be done to save my life, right? So I will take it in stride and I'm sure eventually accept those scars until reconstruction. It's not like I have a modeling gig on the catwalk anytime soon.

It's yet another prompting by the powers that be to teach me I can be Miss Organized Type A all i want, but circumstances change and I need to relax, take a breathe, and take the new plan in stride. There is a reason for everything and this reason is TO SAVE MY LIFE. I'll take that.
L

'Twas the Night Before Chemo

This is my first attempt at poetry in years and years. I'm not promising anything grand. Simple rumblings as I typed along.

'Twas the night before my last chemo,
and all through the house,
The kitties and I were stirring quietyly through the house.

Tomorrow I'll finish the eighth and final chemo,
Much to the beasts dismay.
The cancer cells have been punished,
With caustic chemo cocktails for a lengthy 13 weeks.

I'm anxious and ready to finish the task.
This is the first phase of the treatment.
Next phase,
Radiation daily for at least six weeks.
"X" marks the spots where cancer was found.
Gamma rays will fry the little monsters and I'll happily bid them adieu.

The final phase is to take precautionary measures to ensure my success.
Surgeries, diet, and exercise are my plan,
For an greater prognosis as I was told by the man.

When will I feel myself again?
Notice I didn't say "normal,"
I think cancer creates a different kind of normal for a cancer survivor.

When will I have a full head of hair, and what color will it be? Fuzz has sprouted! Joy!
When can I run again with sweat on my brow? When will my brow show itself again?
I look to the day when energy returns, it left me several weeks ago.

I hoped to go to sleep with visions of remission dancing in my head.
A prescribed steroid has other plans this night; complete sleeplessness.

With a cumulative force; each treatment has become increasingly worse.
I'll likely brave this final round with teary eyes and a body in pain,
silently screaming for relief.

These are the times I live one moment at a time. Nausea, thrush, weakness, fatigue, depression, displacement of food, and misplacement of my mind. Such are the wonders of chemo.

I will endure the last treatment, now in just five short hours.
With hopes the last aggressive cells are targeted and destroyed

I look ahead for happier times.
When cancer isn't the first thing I think of first in the morn.
When fear doesn't paralyze me, but becomes the catalyst to force me to become even stronger.

MRI and CT Scan Normal!

Finally some good news! The CT of my chest and the MRI of my brain showed no cancer. I am beyond thrilled. I had been so upset thinking it may have spread. I told the nurse today that the newest lump in my axils a has nearly doubled in size since last week. I may tell them that my preference is to get a biopsy on those lumps-to be absolutely positive!

I've shifted my thoughts now to things I'm grateful for and things worth living for. And I have many, MANY things to be grateful for. Right now, I'm grateful for the little fuzz of hair starting to sprout on my head. I feel like a newborn baby. I wonder what color it will be? What texture? It seems very light to me, as on, ahem, gray. That would be fine. Gray hair is beautiful. It would be another badge of my cancer journey!

Our son, Conor, drilled this weekend with his Army Reserves unit and was given an Army Achievement Award. And he was given the news about the unit. They are being deployed in May, 2012. That made my heart skip a beat. I'm very proud of him. I made it through two of Michael's deployments, I can figure out how to make it through Conor's.

So, now, breathing a sigh of relief. I'm more focused on finishing the LAST CHEMO TREATMENT and then six weeks of radiation. Deep breath in....deep breath out......om....namaste.

Chemo Number 7 Completed!

Yes, chemo number seven has been completed.  It was Taxol #3.  The typically appointment goes like this:  I wave at the women at the front desk and head to the chemo suite.  Then, an oncology nurse puts the Power Port gadget on my chest, draws blood, and then I head back to the front waiting room.  

I met with the oncologist today and told him I felt a new lump in my axilla this morning.  Now, I have two.  He said he is very concerned about it.  Tomorrow I go to the hospital to get a CT of my lungs with and without contrast, so my gadgets for the Power Port in my chest so it can be used to put the contrast. Then, on Friday I'm going to have an MRI of my brain.  I've been having headaches again.  And that will be with and without contrast.  

My mind is a scattering of fear and unbelief.  Especially based on my post yesterday - that I've been scared that I may not make it through this.  Cut, paste, and delete.  :)  I'm going to try to go through these three days of tests trying to remain positive and process some of the things Michael and I discussed with the oncologist.  I seem to remember that he said if the chemo didn't work and I have cancer in other areas, that I wouldn't have to do the final treatment.  Michael thought he said they would do it prophylacticaly.  The oncologist said that if it is metastasized to other areas they will look for Phase I and Phase II Clinical Trials.  He mentioned the words "salvage palliative care," and I wrote them down without a full understanding of what it means.  At first I thought it meant they were going to send me home to die, but that's not the case.  I'm still reeling. 

Next, we headed back to the chemo suite.  Michael calls it the "she-mo" suite.  Because I had not received the Neulasta shot last time, my WBC's were lower, but not so low that I could not get chemo today. I was happy for that!  I want to stay strong and get done with all the treatment!  My Dad and Ellen were there during that time and doted on me.  Dad got some photos of me with a new ski cap I got from my friend Lindsey!  It rocks!

So, I received the pre-chemo cocktail and then the nurse started the Taxol infusion.  Within one minute I started having a reaction. I could feel a blue fog in my chest and lungs and it was hard to breathe!!!  I also felt an entire pressure in my head and looked at Ellen and asked her if my head was red and originally it wasn't, and then within in minute or so, it became very red.  My Dad hit the bell and the nurse immediately turned off the Taxol and even used a syringe to get it out of the line in my chest.  My blood pressure, normal at the beginning of my appointment, was up to 144/95 or something alarmingly close to that.  It quickly went down.  They ordered additional Benadryl to infuse into my port and then started it again about 45 minutes later.  I was closely monitored and didn't have another interaction.  Thank goodness!!  With the additional meds in my system, I went right to sleep.  Michael went to do some errands and Dad and Ellen stayed with me.  

So, it ended without any fan fare.  I'm home, now resting, and blogging!  I plan to go to bed early.  I'm anxious about the upcoming tests and pray there is no cancer.  

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!

Bald Headed Blues...Yup

Just, awesome.  My favorite line is "I didn't battle cancer...cancer battled me."  I LOVE all of them "shaking it" at the end of the video.  Makes me happy watching it.  Embracing my baldness.... ~denise

Chemo #4 and upcoming surgeries

My fourth round of chemo has been extremely hard.  It was my last round of Adriamycin and Cytoxan.  It's as if they knew - and their parting gifts were extra bouts of nausea, bone pain, thrush (again), muscle pain, and severe fatigue.  Chemotherapy is cumulative, so I should have known it was going to be worse than the last round.

Work was out of the question this morning.  I could barely get up the stairs to make myself breakfast.  Scrambled eggs..and yes, more toast.  After making breakfast I was exhausted and had to take a nap.  

Our animals are enjoying having me at home.  Our dog, Missy, raced downstairs because she now knows my modus operandi is to crawl right back into bed after breakfast.  Within minutes I was surrounded by two dogs and two cats (two abstained, or there was simply no more room left on the bed).  They must sense I'm not well, and as they tucked themselves around me, they each had to have a paw on me.  I envisioned it as a furry "laying of the hands" on my tired body.  That in itself was comforting.  

Next week I'll start receiving Taxol.  Yes, the oncologist said they have it in supply again.  I will admit, I'm anxious about it.  He explained last week it has the same side effects as A/C.  I know he said I'll receive much more dexamethasone, a steroid I have received with each A/C treatment.  It seems that he said I would receive about five times the dose I'd received with A/C.  He also said it will take 4-5 hours to infuse Taxol into my system.  If I understood correctly, it has to be done slowly because there can be reactions to it.  The major source of my anxiety comes from the fact it can cause neuropathy, meaning that I could have tingling, pain, in my hands and feet and/or lose the ability to button a shirt or hold a pen.  He did say because I'm getting dose-dense treatment for two months (every two weeks x 4 treatments) that I may not get neuropathy.  That's my hope! 

We also had a lengthy discussion about my BRCA2+ genetic test results.  The bottom line is this - he said if I was inclined to have an oopherectomy and bi-lateral mastectomy - that would be the best course of action.  My mind was overwhelmed with this prospect so I don't remember every aspect of the conversation, but I know he said something to the effect of "I need to be blunt, cancer could take your life."  My friend Sarah was with me and said, "that was hard to hear."  It is hard to hear, but I appreciate his honesty.  I know what I'm up against.

The oncologist escorted us to the chemo suite and then called the surgeon for me.  Some surgeons prefer to do the bi-lateral mastectomy before radiation and other prefer to do it afterwards.  My surgeon said she wanted me to get done with chemo and radiation and then we'll proceed with the surgeries.  I need that amount of time to come to terms with the surgeries.  The oncologist said the oophorectomy is "a chip shot," which Sarah and I found quite funny.  He meant it is a fairly "easy" surgery.  The bi-lateral mastectomy is another matter altogether.

It's easy to say "they are only breasts" and "I won't let my breasts kill me," which I've said, but mentally it is intensely difficult to know in a matter of months I will have my breasts removed.  When I started this blog, I wanted to educate people and document my journey.  I thought I would be writing about cancer, treatments, challenges, successes, and eventually, remission.  I had no idea my journey was going to delve into such an incredibly personal matter.  Yet, I will write about it.  It's a part of my journey.

On that note, I've often written that this is a marathon and not a sprint.  With these new developments, I realize that it will be more like a lifelong competition against a formidable opponent.  I'll do whatever it takes to win the race.