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.

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