The Journey Continues...

Yes, it has been years since I sat down and wrote on this blog. But, I've decided it's time to get back on and express a few thoughts here and there. The biggest realization is that being a cancer survivor is wonderful! I cherish EVERY day. It was at this time four years ago (June 17) that I was diagnosed with cancer. By this time I'd had the initial surgery where the doctor could visually tell it was cancer she removed from my breast. I'd also had the axilliary node dissection that found three cancerous lymph nodes. I started chemotherapy on August 2nd. So, the summer time will forever remind me of the benchmarks I made in 2011 as I began this journey.

Now, four years later, I have to say that it's not easy being a survivor. The fight will never be over. I tried to believe that I was "done" and I could move on with my life. In reality, I think of cancer every day. Life before cancer. Life during treatment. And now, life after treatment has concluded, but cancer is still lurking in the background. I see my scars every day - a very blunt reminder that I had to have both breasts removed to save my life. I still hate to look in a mirror...I guess I'll attempt to work through that now that I've realized my cancer journey is not over.

And, right now I'm back to where I was four years ago. I am undergoing tests to determine if the cancer has returned in my sternum. That would mean I have metastatic breast cancer. Stage IV. A terrifying thought.

On July 12th I went for a lovely walk/hike in my neighborhood (I now live in Boise, Idaho, I'll go into that at a later time) and I was so grateful for my life. I looked at the world through a beautiful lens happy to take in the morning fresh air, hearing quail in the distance and hoping to see a little covey of quail toddling across my path, and hiking to Castle Rock. Upon returning home I stretched and started to putter around the house. Suddenly I began to have chest pains. The kind of chest pain that scares you and makes you wonder if you're having the dreaded heart attack that strikes many women. After about 15 minutes I decided it was serious enough that it warranted a trip to one of the local hospitals. Numerous tests and hours later I was in a taxi on my home. No heart attack or blood clot was found. The reason for my chest pain was determined to be costochondritis. It's inflammation in the chest and the best definition I was given is that it's like arthritis in between the sternum and ribs between the cartilage. It is painful. Sharp and stabbing pain.

As I Googled and researched it that evening, unable to sleep because of the pain, I came across several articles about women that had a "costo" diagnosis and breast cancer. Their chest wall was radiated during treatment, just like mine, and then had costo start during their treatment, or years later. This appeared to be the case. Ok, I can handle this. Then, I saw a forum where several women were diagnosed with costochondritis mistakenly. Their cancer had returned in their sternum. Metastatic breast cancer. My pulse quickened. Could this be me as well?

I asked this very question hours later of my new cancer physician. A petite woman who I've come to know in the past 12 months. I had a scare last year and had to have a biopsy. Negative. Now, I explained what happened and the costo diagnosis and my subsequent research. I asked if we should look into this further. She immediately said, "yes, and I'll order a CT scan and a bone scan." Then she looked at my chest and checked for lumps and enlarged lymph nodes, and as she did so she asked me about a red rashy spot on the right side of my chest. I told her it had started itching while I was at the hospital. I was on so many pain meds the nurses had explained it was a side effect from the meds. I thought they were probably right and continued to scratch like crazy. Well, Dr. H said, "Denise, I think that looks like shingles. We need to get a swab of that." I was so shocked! Shingles was one of the furthest things from my mind. But, she was right. The next day I got a call from her nurse and she said the swab tested positive. Anyone that has had chicken pox can later have a flare up of shingles. So, we hypothesized that perhaps the intense chest pain was from shingles and/or costo? I could only hope it was one or both of these combined - and not cancer. Anything but cancer.

Now, a week later, I have the CT and bone scan results. The CT didn't reveal anything. The bone scan did. A small/tiny area on my sternum showed tracer activity. The radiology report was posted on my personalized medical file two days ago. It was one thing to hear Dr. H tell me the news, but to read through it made me fearful. "A small metastatic ossesous lesion or insufficiency fracture occult on CT are not entirely excluded." If symptoms continue follow-up with MRI. Yes, it said small, but all I see is metastatic. Osseous means bone. Cancer in the bone. Dread and fear wrap their arms around me and squeeze.

I try to calm myself. I know positive energy is just as powerful as prayer. Both were important to me as I went through this four years ago. And with each subsequent scare. But this one really has me rattled. I have very good intuition. I knew it was cancer 4 years ago. I had to argue with the surgeon to do the surgery. She and the radiologist thought it was only a cyst. If I had not insisted upon the surgery I would not be here writing on my blog today. Of that I'm certain. So, I can't help but be scared. I have pain in my chest. Significant pain. I have a history of a the most aggressive form of breast cancer. Triple negative breast cancer. And now, a spot on a bone scan with tracer activity on my sternum. In my logic, you put the two together and the result could be a recurrence. The devil's advocate says it could be inflammation from shingles or costochondritis. Actually, it's probably the angelic advocate that's saying it's one or both of those and the devil's advocate hoping for cancer.

I'll have an MRI tomorrow. One day seems like a month when you're waiting to find out if you have cancer again. It's a terrible torture. I do keep myself distracted by cleaning, shopping, and yesterday I had a highly productive day at work. It was fantastic. And, when my thoughts turned to "what if?" I would remind myself about that power of positive thinking and to live in the moment. As I left my office, my internal dialogue was "live in the moment, live in the moment, live in the....what if it's cancer again?" And so...the journey continues.

First Labs Tomorrow

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

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

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

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

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

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

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

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

Documenting my journey...the beginning

I have toyed with the idea of blogging for the past few years. It seems, now is the time to start an official blog to journal my battle with cancer.

I'm doing this for myself, my children, my husband, my family, and friends.

I found a lump during an exam in my left breast in the middle of May. The next week I had a mammogram and ultrasound. The radiologist told the ultrasound tech it was nothing, a sebaceous cyst. He said other things, but I'll forgive him his inappropriate comments. I'm sure he didn't mean for it to go any further than the ultrasound tech. Then, I was referred to Dr. June Heilman. She also thought it was a cyst, but because my mother and grandmother had breast cancer, she knew it would give me "peace of mind" to have it removed.

I had the lump removed on June 17, 2011. It was an all-around interesting day. I completed a week-long training at ISU on Incident Command Management Teams and took a test (100%- yay) before heading home to prep for surgery. Michael and I rested and quietly celebrated our 22nd wedding anniversary. I was called a few times and the surgery was pushed back because Dr. Heilman had some emergency surgeries to perform first. We went in at 2:30 p.m. At 3:30, Michael laid down in the pre-op room floor. (Michael has a traumatic brain injury [TBI] from two bomb blasts in Iraq in 2006 and was in a lot of pain.) SO, Michael was admitted to the emergency room. I was taken back to the operating room around 7 p.m.

They gave me a local anesthetic with versed and phenergren and it doesn't knock me out, it just makes me more talkative! After about 15 minutes Dr. Heilman said she was done and she said she would see me in the recovery room. Still covered with a blue sheet over my head, I said, "wait a minute, was it a cyst?" She said, "no, Denise, it wasn't what I thought it was going to be. I didn't like the way it looked." I now understand what it means when someone says "tears squirted in my eyes." They did, immediately. But, I still thought to myself, oh, she could be wrong. She checked on Michael in the ED and then came to see me in the step-down recovery room. I know Dr. Heilman isn't one to beat around the bush, so I asked her, "do you think it's cancer?" And she said, "yes." That's how this journey begins.

On Wednesday, June 22nd, I met with Dr. Heilman and she came into the room and said, "I don't have good news for you." My heart dropped. She said it was a lymph node of metastatic carcinoma and the cancerous cells were poorly differentiated. I couldn't take it all in. I got my notebook out and wrote the words down. Shaking. She said she would make arrangements for me to see two oncologists the next week at the Portneuf Medical Center (PMC) Cancer Center.

I left the appointment, called Michael in California (oh, yes, on June 20th I put him on a plane for Casa Colina, a hospital in southern California that we pray will help him with his brain injury, headaches, vision, etc.), called my mom, and drove home to tell Olivia. Olivia gave me a big hug. I told her we are going to fight it! Then, I left a message for Sarah, who was vacationing/on a bike tour in Colorado. She told me she was around the Continental Divide when she heard my message and cried right then and there. I also called my sister and father and gave them the news. I couldn't go back to work. I went to my friend Jennifer's house. My son, Conor was there and I told him of the new diagnosis as well. He stayed with Jen and I as we talked about what Dr. Heilman had said. I just felt numb.

On June 28, 2011, I got my stitches out, went back to work for an hour, and then made my first of what I'm sure will be many trips, to the Cancer Center. It was strange. I parked in the "Cancer Patients Only" parking spot. In the waiting room there is an American Cancer Society area with wigs, scarves, and so forth. I didn't look at it too closely. Sarah, back from bike tour, met me there so I would have someone with me and to listen.

Dr. Ririe and Dr. Callahan were great. I was EXTREMELY nervous. They wanted to get to know me and I wanted to get down to the bottom line! They told me that this wasn't a test, and I said, "I already flunked the test, that's why I'm here!" I explained that Michael has a TBI and I was so nervous I said he was in Iraq, luckily Sarah caught it, and said, "no, he's in California." I tried to take a deep breath and calm down. I explained I have two children Olivia (15) and Conor (19), work at the health department, and have a history of cancer in our family.

I took many notes. Dr. Callahan said we were going to "weed the garden and get all of the bad weeds out," and we are going to "hit this one out of the park." I let them know I'm type A, and want answers, that it is driving me crazy I could have cancer elsewhere in my body and don't know where at this point. I asked for the bottom line. They said the first surgery didn't get clean margins, so I'll have to have a lumpectomy and at least 6 rounds of chemotherapy and 30-33 radiation treatments. That was a shocker! I knew I would have to have treatment, but wasn't quite prepared for surgery, chemo, and radiation. I left the appointment with a new counselor, an appt. for a PET scan in on 6/30 and an MRI of my brain on 7/1. They said we have to move quickly on this. I was thankful. Sarah and I were introduced to the social worker, Robb, and scheduled an appointment for two days later. Sarah had a delightful time telling Robb funny stories about my hypochondria related to a emergency preparedness exercise when I somehow came down with symptoms of the bubonic plague. I will admit I'm a drama queen and a hypochondriac...that is hard for me to admit, but it's time to be honest and. What's worse than a drama queen hypochondriac with cancer, I ask you?

On 7/7/11, Jennifer drove me to Idaho Falls for the PET scan. They didn't inform me they would inject flourium-18 into my veins to light up the cancer if it was there. Debbie Boone's song, "You Light Up My Life" comes to mind at this moment. I had to be perfectly still for 45 minutes after getting the injection. Any movement, and the radioactive isotope would move to that area. I just prayed and actually, fell asleep. While in the PET scanner I had a talk with the cancer cells and said "come out, come out, where ever you are," like Robert Deniro in Cape Fear. They listened and made themselves known.

It turns out, cancer was detected by the PET scan in two lymph nodes. Sarah and I met with Dr. Ririe on 7/5/2011 and he said the two nodes lit up quiet brightly. And he said the diagnosis was Triple-Negative Breast Cancer. What?! I haven't even heard of that kind of cancer before. My mother's was estrogen receptor positive, so I was thinking it could be something along those lines. Dr. Ririe said, "Denise, I have to be honest with you. This is the worst form of cancer to get. I'm not saying you are going to die, but the prognosis is not always good." And he said, "this type of cancer has a high rate of recurrence." I've Googled, researched, and what he said is in the sites I looked at. He wanted an MRI of my L. breast (not my left foot) and wanted me to schedule with Dr. Heilman right away. He said instead of the previously mentioned 6 treatments of chemo I was now to receive 24 weeks of chemotherapy. Twelve weeks with adriamycin and cytoxan and 12 weeks of taxol. But, we cannot start chemo now until I've had a lumpectomy and a total axiallary node dissection to get the cancer out of my armpit. I hate that word, so I'm sticking with axilla.

When I left, I told Chris at the front desk, I want the MRI this afternoon, an appt. with Dr. Heilman, and surgery by the end of this week. Did I mention it was a short week because Monday was July 4th? Well, it all came together and I had surgery on July 7th. That's a day I won't soon forget. I remember crying as they were wheeling me to PACU. Telling them Michael was in California, and that I really haven't cried much since the diagnosis. I also told them I was texting "sleep," or under anesthesia. I can't remember who I was texting. Then, the PAIN hit. Wow! A 10 on the scale of 1 - 10. My nurse, Deb, brought the morphine, but it didn't work. Finally, a shot of torradol (sp?) and percoset worked. Dr. Heilman said she couldn't tell how many nodes she got, but she could see abnormal nodes.

Bless her heart, Olivia was with me at the hospital the entire day. I was scheduled to go there at 8 a.m. and surgery at 10:30. I didn't go in to surgery until around 1:00 p.m. Jen came just after I went in and took Olivia to lunch. We went to Albie's for pain meds, to our house to pick up some of my things, and then I got to stay at Jen and Charles' house that night. Nurse Darcy took great care of me. Aiden and I watched the end of a Star Wars movie. Then Olivia and I watched Almost Famous. I groaned a lot. Olivia doesn't like needles or she would be an excellent nurse. She has been so good to me during this last week.

I'm now one week post-op. I got the drain tube out yesterday, painful, but happy to have it out. Then, Dr. Heilman told me the pathology report said seven nodes were found and three had cancer. I'm a little disappointed more were not found. My mom had 16 removed, thank goodness none of hers had cancer. But, if there are little cancerous mutants that were missed, I'm fairly sure the chemotherapy regimen is going to kill them in their tracks.

I am nudging the Cancer Center to get my chemo moved up a week earlier since I got Dr. Heilman to do the second surgery so quickly. I've waited impatiently all day for a phone call saying we can start early, but alas, no call. I go to see the cancer counselor tomorrow, and that will give me an opportunity to find out if it's possible to move it to the first week of August.

I also need to verify what stage and grade the cancer is. Dr. Ririe said on 7/5 it is a stage II or stage III. I believe the grade is how aggressive it is, and from what I've read, TNBC's are usually a grade 3.

I went to work today. I am exhausted tonight. I'm not sleeping well. Every morning, I wake up and for just a short amount of time I listen to the dogs snoring, or the birds singing outside, and then think, "oh crap, I have cancer." I've spoken with several people about how I seem to be accepting all of this slowly, or as much as my brain can can handle at a time. It took me days to realize that Dr. Ririe said my chemo would be "24 weeks," which is really SIX months. Slow on the uptake, but probably as a coping mechanism.

I am no longer drinking any diet soda. I had cut down, but now NOTHING with aspartame. I'm drinking tea instead of coffee, but one book says to cut out all caffeine and alcohol. I've only had two glasses of wine in the last month. I'm eating MANY more fruits and veggies and when I'm feeling a little more up to it, will get back to exercising. I am craving sugar, but have read that cancer feeds on sugar, so I need to really work on that craving. My other craving is spaghetti sauce. Red sauce. Yum..

So, whew, my first blog post is a LONG one. But, they will be shorter now that I've caught Mr. Blog up to speed.

I have to acknowledge my family and friends. I am receiving a tremendous amount of support from everyone. Family from Idaho, Utah, and Arizona call/text me almost daily. The encouragement from my friends on Facebook has been incredible. And I'm very thankful to work at the health department where they are being very understanding and supportive of my situation. I now realize this is going to be a marathon, not a sprint. Hopefully, not an ultra-marathon because I've never had an interest in completing one! I've done a half-marathon, and toy with the idea of a marathon....maybe that can be a long-term goal still within my reach. For now, my number one job is to take care of my mental, emotional, spiritual, and physical SELF.

And, my grammar is not perfect. My brain is challenged by this new reality of cancer. Just be patient with me. Laugh, cry, and cheer me on. ~Thanks, Denise