Results and Realizations on July 4th

Let me start where this blog ends. I've been writing this latest blog entry as people are out celebrating Independence Day. It has taken me a few hours to put my thoughts down...hopefully I did a decent job trying to convey those thoughts...

I began this day taking my daughter to participate in the July 4th parade. I later went to a park to watch the parade. I didn't get a single glimpse of my daughter along the parade route (so many people!) but I am so proud of her. She handed out candy and water to spectators and has the blisters to show for it. I thought of my first grandson, Donnie, who was just born last week. My son was here for 10 days to surprise his wife and be here when his son was born! It was such a wonderful week. And at the end of last week I got my results.

I called last Friday to let them know I was anxious (an understatement) to get the results. The receptionist said they were going to call me to schedule an appointment. I immediately thought it was bad news. I explained how crazy my week had been and that I needed to know THEN what the results were. She scheduled me for a few hours later (thank you). I was prepared for bad news again. It wasn't! 

The oncologist had heard how anxious I was and came to get me, Michael, and Jennifer (I was so worried I took my major support system with me) from the waiting room. Before we even got out of the waiting room he told me it was good news! Once behind the closed door of the exam room he told me no cancer was detected when the PET scan was done. I felt such a wave of relief. I have received so much bad news on the cancer war that I expected it again. Finally, good news! He cautioned that occasionally the PET scan can miss something. He encouraged me to keep track of the mass on my rib. That won't be hard... it is quite painful. We discussed it further, and I will go back in four weeks. I can call at any time if I have fears that the area is still growing larger. I am now moving forward with the thought that I'm cancer free and in remission. 

Lately, I have done serious soul searching about the past year - and the future. It's not easy to find the right words to explain what I'm trying to convey. Our family has been through so many challenges, I took my triple-negative breast cancer diagnosis as just another blow, and instinctively I knew I had to persevere and fight. Let me try to explain myself a little better.

In the beginning of June I met with a breast cancer survivor who has been encouraging me from afar during the past year. She is the friend of a dear friend. I finally had a chance to spend time with her and she was so knowledgeable and helpful to me! She received her diagnosis four years ago and is incredibly insightful. She put words to many thoughts in the back of my mind...WAY back in my mind...in the chemo fog. As the fog is slowly lifting I am processing what has happened in the last year.

I believe I was so stressed out after my diagnosis I went into somewhat of a self-preservation mode and charged through it with a brave face and "I can do it attitude," and I didn't process what was really going on. Yes, I researched every little piece of information about TNBC, BRCA2 genetic mutations, chemotherapy side effects, radiation, diet, and made educated decisions about my treatment and surgeries, but I distanced my own emotions in order to get through everything. I used one part of my brain for important decisions and set another side silently upon a shelf. It may sound strange to people who know me well. I wear my heart on my sleeve, so to speak, and often blurt out to anyone listening what is going on in my life. This is no surprise to my friends and family. However, I have now come to some pretty big realizations about how I got through the last year and I have decided to rescue the other part of my brain and myself.

I'm no longer in crisis mode. I'm recovering and in remission. And yet, when I found myself soul searching, I was not truly happy with my life. I was moving through each day in a mechanical manner. Going to back to work and resuming activities I hadn't participated in for a long time. I forced myself to leave the house and venture out a little more. I had been emotionally and physically  hibernating. Then, I crawled out of the fog, just a little at a time. I found myself laying in the warm sunshine at a community concert. I walked along a beautiful and sparkling lake with our typical 15mph southeastern Idaho wind right along with me. I went back to church. I was overjoyed listening to the pastor and Praise Team once again. I was awakening and beginning to touch upon ways in which my world had changed while I went through chemotherapy, radiation, and six surgeries. 

During this time, there were other occasions where I sat back and took a deep breath and thought about my life -  and asked myself what I needed to do in order to be happier? Life changing thoughts took place. Some hard decisions were made versus difficult choices. I made a few choices in order to set myself on a new "marathon" course.

I've had several more realizations as I've struggled to write down my thoughts this evening. I have used the word "I" so much I'm reminiscing about Stuart Smalley in the Saturday Night Live skit where he famously said, "I'm good enough. I'm smart enough. And doggone it, people like me." 

It has made me uncomfortable to share how detached I was. But, I wanted to share in case there are other cancer marathoners out there following my blog. You can learn through my observations. Being scheduled to get results isn't always a bad thing and you can get through the journey in ways you didn't know were possible. 

I thought I was doing so well battling cancer. I had the most fantastic support system anyone could wish for. I was in awe of their support for me and thought I was brave as I went through the year without shedding many tears. But I wasn't really supporting me. Now...I am. Now...is when the bravery begins. Living life now. On this Independence Day. After cancer. 

I can hear the fireworks now. And I am son grateful for this day.

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