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.

BRCA2 and Henrietta Lacks

So, I've had some time to process my BRCA2 positive test result.  I had somehow convinced myself the tests would come back negative despite the fact my mother has had cancer twice and my grandparents on my father's side had breast cancer and prostate cancer.

I received a packet of information from the Myriad Genetic Laboratories, via the Cancer Center, on Thursday, September 15, 2011.  It says, "the results of this analysis are consistent with the germline BRCA2 frameshift mutation 4075delGT, resulting in a stop codon at amino acid position 1284 of the BRCA2 protein."  It also says,  "deleterious mutations in BRCA2 may confer as much as an 84% risk of breast cancer and a 27% risk of ovarian cancer by age 70."

Well, I've become part of the 84% statistic already.  I've decided I will have my ovaries removed and will not become a statistic for ovarian cancer.  I will likely also have a bi-lateral mastectomy to reduce my chances of getting breast cancer again.  The information indicates a cancer risk reduction of 90% with a mastectomy and 96% for oophorectomy (removal of ovaries).

As I mentioned in previous posts, it increases my risk of other cancers as well.  The information says, "some families also have an increased risk of pancreatic tumors and melanoma.  Consider full body skin exam for melanoma and investigational protocols for pancreatic cancer."  This is something I will also speak to the oncologist about on Tuesday.

I am currently reading, The Immortal Life of Henrietta Lacks, by Rebecca Skloot.  (Thanks to my friend, Destiny, it is an awesome book.)  The cover of the books puts it simply, "Doctors took her cells without asking. Those cells never died. They launched a medical revolution and a multimillion-dollar industry.  More than twenty year later, her children found out.  Their lives would never be the same."

Henrietta was diagnosed with cervical cancer in 1951.  And, without knowing, they took healthy and cancerous tissue slices from her cervix.  For years, researchers had been trying to grow cell cultures in laboratories.  Henrietta's cancerous cells grew - and grew and grew.  The book says there is no way to know with accuracy how many of the "HeLa" cells have been grown, but they estimate they would weigh more than 50 million tons.  It's incredible.  I'm amused by it because her cells have been instrumental in cancer research. The book says they assisted in developing chemotherapy drugs like Taxol, which I will begin receiving in about 16 days.  Thank you, Henrietta.

The book also says, (the cells) "helped to developed drugs for treating herpes, leukemia, influenza, hemophilia, and Parkinson's disease; and they've been used to study lactose digestion, sexually transmitted diseases, appendicitis, human longevity, mosquito mating...Henrietta's cells have become the standard laboratory workhorse."  Amazing, right?!

Disturbingly, her family knew nothing of how her cells were being used for quite some time.  Millions of dollars were being made with her cells and her family received no compensation.  Skloot addresses other unethical studies performed on humans such as the Tuskegee syphilis study and the research performed by seven Nazi doctors on Jewish people, both studies done without the consent of the individuals, which brings back fond memories of my medial ethics class.

I may tuck myself into bed early this evening and try finish the book.  It's extremely sad and fascinating at the same time.  I look forward to learning more about her family and whether they were ever given any financial compensation, and what other studies were done with her cells.  Oh, I forgot to mention her cells were sent into space with astronauts to see how zero gravity would impact cellular growth.

Changing subjects - I walked up City Creek for the second time since I started chemo this afternoon.  Olivia and I designated today as "lazy day," but I just really wanted to get out and enjoy the cooler temperatures and a little sun.  I donned one of my favorite new pink shirts, shorts, and shoes.  No hat today.  I was only able to walk uphill 11 minutes.  A far cry from last year when I hiked 6 miles up to the top of Kinport Peak.  Argh.  It's okay.  I took my time and listened to the birds, watched my beloved dragonflies zipping around, and inhaled the clean breeze which had a hint of fall in it.

Unfortunately, I'm still being afflicted by extremely painful back spasms.  As I mentioned after my first chemotherapy session, I talked with the oncologist about it and I underwent an MRI to make sure cancer had not spread to my back.  Luckily, no cancer was found.  But, on day 10 after chemotherapy, without fail, the back spasms return.  It is hard to describe.  It doesn't seem to be affecting my musculature.  It seems as if I have contractions in my spine.  I feel a pulsating pain from my hips to the back of my head that lasts for a minute or two.  It take my breath away.  I'm reluctant to tell the oncologist about it on Tuesday, because I DO NOT want them to reduce my chemotherapy drugs further, but it is equally concerning and painful enough that I'm going to have to bring it up once again.

Hey, I did have a great achievement this week.  I was asked by a colleague to tape a session on our local television station about Breast Cancer Awareness Month.  October is the 25th anniversary of National Breast Cancer Month.  I was more than happy to.  Because the PMC Cancer Center staff is so integral to my care, I asked that someone accompany us on the panel.  Jennifer Robinson, PA, accompanied us.  We talked about breast cancer prevention, screening, forms of breast cancer, my journey and the Women's Health Check program, which screens women with low income for breast and cervical cancer.  The show will be aired twice a week during the month of October.   I will forever be an advocate for breast cancer awareness and was honored to be asked to tape the show!

So, now, to enjoy the next two days to the fullest. Tuesday is chemo.  My fourth and last session of Adriamycin and Cytoxan.  Each treatment has made my side effects worse, so I'm anxious about it.  I continually remind myself the drugs are killing the cancer cells.  My body will become healthy again!

Happy Autumn, everyone!

Genetic Test Results Received

What a difference a day makes.

I posted last night about working a full day.  It really took a toll on me today.  Because I compare my cancer journey to a marathon, I had to come to terms with "pacing" myself better.  I've hit my head against this wall several times now.  I think I've finally learned the lesson.  I left work at noon and took a nap.  Then, I resumed some work from home.

During the afternoon I received a call from the Cancer Center.  My genetic tests were back and I tested positive for the BRCA2 genetic mutation.  I am shocked.  I had convinced myself because the original tumor cells were not breast cancer cells the genetic tests would be negative.  The nurse said I could come in to discuss the results with the oncologist or wait until my chemotherapy session next week.  I said that I would research it on my own and develop my list of questions for the appointment.  She said that's what they figured I would do.  They are awesome and know me well already.

Yes, I've done some research on it.  It has significant implications to be BRCA2 positive.  Women are at an 80% risk of getting breast cancer if they are BRCA2 positive. Well, I already have breast cancer so I fall within that statistic now.  The other implications are a much higher risk getting breast cancer in the other breast, ovarian cancer, and several other types of cancer.

According to the National Institutes of Health, men and women can test positive for BRCA2. their site says, "In addition to female breast cancer, mutations in one copy of the BRCA2 gene can lead to an increased risk of ovarian cancer, prostate cancer, pancreatic cancer, fallopian tube cancer, male breast cancer, and an aggressive form of skin cancer called melanoma. Mutations in the central part of the gene have been associated with a higher risk of ovarian cancer and a lower risk of prostate cancer than mutations in other parts of the gene."  Not very uplifting news.  


Many women that test positive for the BRCA2 genetic mutations opt for bi-lateral mastectomy and removal of their ovaries (oophorectomy).  I will discuss this further with the oncologist on Tuesday.  They indicated in an earlier appointment if the test came back positive I could go to the University of Utah to meet with genetic counselors.  Then I will have to make a final decision as to taking the surgical route to reduce my risk of getting cancer again.  I'm already leaning in this direction.  The decision can wait until after I'm done with chemotherapy and radiation.

The other upsetting factor that plays into this news is that there is a 50% chance my children and sister could have this genetic mutation.  We will look at that when the time is right.  Let's just keep funding cancer research and hope for additional success in screening and treatment - and A CURE so my children don't have to go through what I am now.

It's a lot to take in.  It's hard to not be upset after receiving this news.  I'll just let it sink in and educate myself about my options.

Loneliness

Yes, I'm lonely.  And I didn't want to write about it.  I didn't want to really admit it "out loud."  I have this incredible support system that continually asks what kind of help I need - and yet I feel afraid to admit to crushing loneliness.

I wonder if other people dealing with cancer have similar thoughts on the topic.  I think it's intermingled with being ill from the chemotherapy treatment itself.  Being sick from chemo/cancer is different than when you are sick with a cold.  You know they will eventually subside in a matter of days, or worst-case scenario, a few weeks.  With chemo/cancer, it doesn't go away as quickly.  And mentally, especially when you're confined to bed post-chemo, there is no way to realistically turn off your brain and shut out the fact that you have cancer.  I do TRY.  Honestly.  It has been a little over two months since I received my cancer diagnosis.  Yes, I have longer periods of time where I go without thinking about cancer.  But, it sneaks its way into my consciousness again and I find myself surprised again thinking, "hmmm, I have cancer."  A fellow survivor said he doesn't think you get over that shock of being diagnosed with cancer.

Here's how the loneliness came about...

After chemo last week, I was forced to stay home on Thursday and Friday because I was nauseated and so fatigued I couldn't stay awake for more than 30 minutes at a time.  The reduction in Cytoxan did reduce my nausea, but it was still bad enough that I put a bucket by my bed.  Ugh.  The extreme fatigue was new.

I realize I'm saying I am lonely but not feeling well enough to have company.  It's a no-win situation,  guess.  I only got up to make toast and hydrate.  My only companions were our dogs and cats.  I lifted (yes, lifted) the dogs onto the bed and they nestled in beside me.  My comfort animals.

I started to get concerned about the situation on Friday night.  I've acknowledged my depression in this venue, and the Cancer Center staff are helping me with it, but I was sleeping so much that I was concerned it was becoming a more chronic issue.  I honestly think the sleep marathons were caused by "chemotherapy fatigue."  The fatigue was not as crippling on Sunday.

I watched some of the coverage of the anniversary of September 11th on television.  I had been avoiding watching coverage because the events on that day are extremely personal for me.  That day changed the world, and just as it did for many other families, it had a major impact on our family.  Michael received a call on September 12th, 2001, and was put on alert that he may be deployed by the Army. And he was, four years later.  As I've said, he is now a Wounded Warrior, after being injured by bomb blasts in 2006.

As I watched the coverage, I cried for those that lost loved ones on September 11th and for the soldiers killed and injured during the war in Iraq and Afghanistan.  As I watched the World Trade Center Memorial fountains, the footprints where the World Trade Center towers once stood, I couldn't  help but compare the water flowing in the fountains to the amount of tears shed by the world on September 11th, and since.  Millions of tears.

Our church had a special service to acknowledge the anniversary of September 11th.  That alone was hard for me.  Active-duty members of the congregation were asked to wear their uniforms, including our son Conor.  My husband Michael should have been there wearing his uniform as well.  I was proud of Conor and had to laugh.  He played bass guitar with the worship team while wearing his uniform!  It was a great visual! I wish I would have gotten a picture of it.  [Speaking of pictures, my Dad and Ellen did a "fashion shoot" with Olivia this weekend and took stunning pics of her...it made her weekend!]  Physically, I couldn't even stand to sing at church I was feeling so lousy.  It's SO frustrating to me having my once healthy body being subdued by chemotherapy treatment.

Note to self and positive affirmation:  The limitations are because of the chemotherapy and will be short-term.  Chemo will rid my body of cancer and I will regain my strength when I'm in remission. 


Today, I was back at work at 8 a.m.  It was so good to be with PEOPLE!  I'm exhausted this evening.  And it was a good day.  I received so many cheerful messages that I am again, truly grateful. I received beautiful flowers, a pink t-shirt from a local fire department for Breast Cancer Awareness month, two cards from my "chemo angels," and a beautiful scarf directly from Thailand!  A friend of mine from high school has sent me ginger candy to help with nausea (they did) and the scarf.  It's incredibly beautiful!  Today made up for the loneliness I felt over the preceding days.  It was just what I needed.

This week is my "no chemo" week so I'll enjoy the rest of the week until "the smackdown" again next Tuesday!  Now...time for healing and restful sleep!

Chemotherapy #3

Chemotherapy #3 with Adriamycin and Cytoxan is complete.  Yay!  One left to go with A/C and then four rounds of Taxol.

I worked before this round & left work after a conference call.  The Cancer Center parking lot was FULL so I had to park in the parking garage.  I felt a little strange walking in with my big fluffy pink blanket.  I am 43-years-old and carrying a blanky.  But, it truly does give me great comfort.  And warmth!  I get so cold during treatments.

My Dad and Ellen came in right after they inserted the tubing to the port, while Brooke was drawing my labwork.  Then, we met with the PA, Jennifer.  She is awesome.  So calm and comforting.  We discussed my back spasm, depression, thrush, and nausea and she said she thought the oncologist would want to decrease my Cytoxan by 10%. She said they had decreased my Adriamycin by 10% last time because my WBC's had been so low.  I didn't know that!  And, I didn't want them to decrease the Cytoxan!  I want to kill all the cancer cells. But, Jennifer calmly explained that I have to be healthy enough to finish all of the treatments and they don't want to kill me with chemo.  I started singing, "Killing me softly with chemo, killing me softly, with chemo, killing the cancer, with chemo..."  She didn't laugh.  I thought it was hilarious. Maybe it was my singing.  All during our visit my dad is snapping pictures!  Some are on FB and I'll post some here.

Also, the Neulast shot is doing its job and my WBC counts were normal!  Bonus. They should be with how much the injection costs.  It should come and fold my laundry too.

Jennifer, PA, telling  me they will decrease Cytoxan.

So, then we moved into the chemo suite and got started with the pre-chemo cocktail of Zofran, Ativan, Emend, and Dexamethazone.  Then the fun stuff.  Cytoxan and then Adriamycin.  Dad and Ellie just watched as they dripped into my veins.  It's pretty surreal.  And, it was so busy.  It makes me sad.  Almost every chemo chair was full when I got there.  I was one of the last ones to leave.  I pray for a cure. 

Talking with Ellen.

We talked about my Dad's recent work in New Orleans (he works for UP Railroad teaching new hires) and because he loves photography so much he went to Bourbon Street and got some great shots of the nightlife.  He's also taking dragonfly photos.  I LOVE DRAGONFLIES.  I've even changed from the Pac Man visualization to dragonflies flitting through my system and zapping the cancer cells.  I just had a thought, I can start singing, "Another One Bites the Dust," while visualizing the cancer cells dying. I must be in a musical mood.

Around 1:00 p.m. my Dad brought up lunch and being hungry.  I told them they could leave, but they didn't want to.  Then, Ellen was reading Sunset magazine and talking about great recipes.  It just made us hungrier!  They ran to Ruby Tuesday and I checked on my work email.  I'm a great multi-tasker.  Receiving chemo and working!  They made it back in time to see Brooke giving me the "Red Devil," the Adriamycin.  It's very potent and it turns my urine red for hours afterwards.  Sorry, TMI, but information someone else may need to know.

Brooke, RN, giving me Adriamycin by hand.

Social Worker/Counselor,  Robb.   

My Dad didn't understand that they major part of my port is under my skin, embedded into my chest.  When Brooke took off the tubing and withdrew the needle, he thought the port was out.  I showed him the bump and had him feel it....he jumped out of the chair.  Too cute, Dad!  

It's chilly in the chemo suite, so Dad was warming his feet too.

With the exception of having to reduce the chemo drugs, it was just a relaxing afternoon catching up with my Dad and Ellen.  I could sense it was hard for them.  It is hard.  But, we'll make it through.  I love you both.

Five more rounds to go.  Then 30-33 rounds of radiation.  Another One Bites the Dust...........

Great Day Followed by Hard Days

It seems to be the case for me.  One great day is followed by days of difficulty.  I'll admit.  I'm really struggling with depression right now.  I'm also still really battling back spasms.  I actually compare them to contractions in my back from my hips to the back of my neck. I had them all day Friday and they have not subsided.  I have chemotherapy tomorrow so I'll bring it up with the oncologist again.  The MRI didn't show any cancer, but I wonder if it is a side effect from chemo.  I can barely breathe when they happen.  It's scary.

I've been in bed all weekend.  I finally made myself to get up in order to get a few more school clothes for Olivia.  And going to a BBQ this evening at my sister's.  Otherwise, I'd still be in bed.  Knowing I have chemo tomorrow doesn't help.  My Dad and Ellen are going with me.  They live in Utah, but will be here for the week are will accompany me.  That will help.

I know I'm depressed.  I've talked to the Cancer Center staff about it.  It's the situation.  Missing Michael.  Feeling lonely.  I just need to pull up my boot straps and get through this.

A Great Day

Yes, today was a GREAT day!  And I want to get it in writing.

I had to get up early to take Olivia to her first day of school as a sophomore (yeah!) so I went in to work an hour early.  I had a great meeting with the grantees I work with on healthcare emergency preparedness - they are a GREAT group of people.  I have to admit I was nervous seeing them for the first time since starting chemo and being bald.  I changed outfits three times this morning and tried several variations of hats and scarves before I opted for a black bandanna.  I love what I do, and after working with this group for nearly eight years, we have grown to know each other well.  They know of the trials and tribulations with my husband's brain injury and now my battle with cancer.  Their support has been awesome.  (Thanks to all of you.)

The rest of the day was equally rewarding and my energy level was higher than it's been for quite some time.  I even thought to myself, "I feel great. I have gone for an hour without thinking 'I have cancer.'"  I thought about how awesome it would be to try to go on a run.  I have a great new "after-cancer" goal because one of my co-workers has recently taken up running and sent me a quick message today asking if we could run a 5k together when I've kicked cancer's butt and feel better.  YES!  ABSOLUTELY, I will run with you, Pam!  Last year at this time I ran a 10k race (Pocatello Marathon) and won the event for my age group.  Now, I would be lucky to get around the track a few times.  I stopped by the grocery store on my way home tonight and was winded and exhausted after carrying my grocery bags to the car.  I felt like lead.  Bummer, yes, but it's okay now that I can look to the future with the 5k goal in mind!  :)

The only sadness I've felt today is during and after talking with Michael.  He met with the endocrinologist today and she said his pituitary gland is not working at all. It appears to have been damaged in the bomb blasts and it has completely stopped working.  He will have to receive testosterone and growth hormone injections for the rest of his life.  About five years ago I was battling arthritis (HLA-B27+) and had to give myself injections (and the injections put my arthritis into remission) so he said he wants me to give him the daily growth hormone injections when he comes home.  This alone has been a journey in itself.  Learning to live with his PTSD, chronic pain, disability, and challenges to daily living activities.  It's a small setback learning this new diagnosis, but one we can learn to live with.  As we are near the 10 year anniversary of September 11th I am extremely proud of Michael for having gone to Iraq twice for the U.S. military.  I have hopes he will be home in the next few weeks.  I miss him so much right now.

Olivia had a great first day at school.  We talked about her classes and she did homework!  For those of you know me well, know that I'm a learning GEEK and LOVE homework. I'm not afraid to let the rest of y'all know that either.

Both of us are already heading to bed.  Olivia is in marching band and they start bright and early every day at 6:30 or 7 a.m. so I'll be getting up early again tomorrow.

Oh.  My oral thrush is gone...as are my eyebrows.  Very weird.  And what little stubble I had left on my head was on my pillowcase this morning..  Without stubble acting as "traction" my bandanna slid around on my head all day.  I kept adjusting it to try to hide the fact that my eyebrows have fallen out.  Oh, the joys of chemo and baldness.

Today... I'm grateful for having such a great day at work and having ENERGY.  Good night!

Rough Road

Wow, what a difference dose-dense chemotherapy made.  I have been so sick since my treatment last week.  The effect of chemotherapy is cumulative each round will be more difficult, but the whammy from the last round really got me.

I had my labwork done today at the Cancer Center and then met with a nurse practitioner.  My white blood cells are up a bit, but still in the low range.  I'm dehydrated despite the fact I've been drinking what I thought was enough water to keep dehydration a non-issue.  I'm struggling with how fatigued I am, the nausea, thrush, bone pain, and the limitations my body is now feeling.  Honestly, I sobbed at my appointment explaining how difficult the last week has been.  The NP was compassionate and comforting (she gives great hugs too).

She gave me a printout of a quote by Mary Anne Radmacher:  "Courage doesn't always roar.  Sometimes courage is the quiet voice at the end of the day saying 'I will try again tomorrow.'" I love it. 

As always, I want to end on a positive note.   Thank you to friends that comforted me and offered their comforting words of encouragement today as I cried..  And thank you to fantastic neighbors for bringing dinner this evening.  It was SO good.  Thank you.  Okay, crying again...but tears of gratitude for the support.

Tomorrow is another day....

Rebecca Rusch and Thrush - August 26, 2011

I was able to go to work for six hours today!  Nausea and all.  I wanted to push through because I had plans for the evening and didn't think I should go if I wasn't strong enough to put in some time at work.

After work, I took a two hour nap.  When I woke up, my tongue was painful.  I looked at it in the mirror and it was solid white.  I called a friend and she confirmed what I thought it probably was "thrush."  I called my dentist and he called in an anti-fungal rinse for my mouth.  It hurts so I use my magic mouthwash with it.  Just another sign my immune system is being bombarded by chemotherapy.

Idaho's own Rebecca Rusch!  Inspirational for me!

On to the evening's festivities.  Dr. Fahim Rahim and Barrie's Sports brought Rebecca Rusch to Idaho State University for the showing of Race Across the Sky II.  I was certainly in need of some motivation!  Get this, I took my "are you terminal" hat with me and had her sign it!  It now says, "You are Amazing ~Rebecca Rusch."  I should have told her about the woman who asked me if I was terminal.  Now, I'll wear that had with pride.  Rebecca has won the Leadville 100 mountain bike race the last three years.  She calls herself "The Queen of Pain."  I've followed her for the last three years.  She is a force!  She said riding 100 miles or 24-hours is all in the mind.  Your body can do the work if your mind believes it can.  That almost brought me to tears.  Just the inspiration I needed to hear after having quite a few hard days after Tuesday's chemo session.

Thrush, bone pain, nausea, sores in my throat and stomach, hair loss, extreme fatigue....cancer....I can mentally make the shift to mentally believe the chemotherapy is doing its work.  It might tear me down, but I will get back up again.

But for now...back to bed.

MRI Normal and Other Stuff

Thank goodness... the MRI was normal.  It's enough to have metastatic triple-negative breast cancer of unknown primary origin.

I'm going to come right out and say today has been a hard day.  Yes, I received good news that there is no cancer in my spine.  But, I've felt terrible all day.  Rolling waves of nausea, bone pain, headache, and fatigue.  I did some work until my fatigue took over.  I slept all afternoon.  I've had toast and ice cream.  The only things that I thought I could keep down and sounded somewhat palatable.  Every 6 hours I take Atavan and every 8 hours Zofran.

I talked with Michael today.  That in itself was also upsetting.  He had a growth hormone stress test on Monday.  The results show his pituitary gland is quite damaged.  We already knew this because his testosterone levels were so low.  His growth hormone is low as well.  Apparently he will need to get testosterone and growth hormone injections the rest of his life.  Tonight, all of this is getting to me.  How can he have this complicated brain injury and at the same time I have cancer?

I wish he was here to see the transformation of my bald head and lack of eyebrows.  To hold my hand when I'm getting chemotherapy.  To help me remember when to take my meds.  In sickness and in health, right?  But, there have been some complications along the way and that deal isn't working out.  Clearly, I'm depressed.  He is where he is supposed/needs to be.  I'll just have to manage here.  I know I have an overwhelming amount of support - and I'm thankful for it - I just simply wish he was home while I go through this.  At the end of the day I'm lonely.

That being said, I'm emotional and tired.  Tomorrow is a new day.  Hopefully without nausea and fatigue.

MRI and Neulasta Shot-August 24, 2011

I woke up nauseated and exhausted.  I went to work for a few hours. Then, I went to the Cancer Center, received my Nuelasta shot in the back of my arm.  Then, I was to receive an IV contrast during the MRI and they indicated my port site could be used for it as well.  My fear of the port is now greatly reduced since I've started using Emla cream.

I'm so tired I fell asleep several times during the MRI, which is a good thing because I get slightly claustrophobic in the tube.  Afterwards, the MRI technician, hadn't taken out an IV access to a port before, so he put saline and heparine through the port, and I pulled it out.  I don't know what I was thinking!  Brooke, from the Cancer Center, said I could go back and have them take it out.  I didn't think it would be that hard.  I had blood to my waist by the time I finally got it out. And, it hurt like crazy/!  I'll have to pay more attention when they take it out during my next chemo.  I should find the MRI results tomorrow.  Hoping for no mets to my spine.  "Mets" is common cancer terminology for metastasis.

On to a less depressing subject.  The Neulast shot. The extremely expensive shot. I had to find out more about it.  Interestingly, I did. Just reading the patient insert at the Cancer Center peaked my curiosity.  Straight from the Amgen, It says, "Neulasta is a man-made form of granulocyte colony-stimulating factor (G-CSF), which is made using the bacteria e.coli.  G-CSF is a substance produced by the body.  It stimulates the growth of neutrophils, a type of white blood cell important in the body's fight against infection."  The most fascinating thing to me is that it's made using e.coli.  I work in public health. We educate people on proper food preparation to prevent getting e.coli, and now I'm paying to receive it in my shots to bring my white blood cell counts up.  I'd already read the most common side effect is bone pain.  Others are splenic (spleen) rupture, Acute Respiratory Distress Syndrome (ARDS), and allergic reaction.  So, there is the result of my research.  I want to do more research on what and how e.coli is used in the injection, but, frankly I'm tired and nauseated.

Time to go back to sleep.