Suspicious--The Early Days

November/December 2007:

Christmas Holiday: I have a small, hard ridge, sometimes painful, not always evident, tugging at me in my right breast. Some days I can feel it, other day there is nothing to find. I feel like worrying about it is overkill, especially after the biopsy I had in my left breast a few years ago was a small, benign, woody cyst. My breast tissue always feels lumpy and dense, often filled with random uncomfortable places that I notice with the cycling of my body. Far too busy with school and holiday company to worry.

March 30-April 13:

Romania/Italy: This was a major stress, poor sleep situation. I realize that I have a huge, obnoxious, swollen area on my right breast that never leaves! It's giving me a little fever and a lot of discomfort. My bra doesn't fit right. I have bad bowels, mild nausea (chalk the last two up to crazy travel in Europe) and I'm beginning to get the message that I'm probably seriously sick. When I get home, I'll get a mammogram.

Thursday April 17: Appointment with Dr. Hensleigh, regular care doctor about swelling. He suggests that it feels like a cyst, springy, maybe filled with fluid. Makes appointment for mammogram, ultrasound, needle biopsy. Fluid can be drained at new “one-stop shopping” type breast care clinic at IMC Hospital.

Thursday April 24: Breast Cancer Clinic IMC Dr. Parkinson, imaging director, mammogram, ultrasound, authorization for needle biopsy, performed. Dr. Parkinson recommended that I prepare myself for a malignant diagnosis. Ads on the radio about a “walk for the cure” to happen in a couple of Saturdays makes me angry—I don’t want to be any part of the cancer community! Waiting for my appointment, I read an article in a magazine about the therapeutic nature of “cancer blogging.” I find the idea repulsive.

Monday April 28: Salt Lake Clinic, Dr. Reese, surgeon. The biopsy is malignant. He said this so matter of factly. I’m not scared about the diagnosis, only detached.I’m a little unnerved by the news that there are choices that belong to me now. Dr. Reese held my hand as I regained my composure following that disturbing detail. We discuss my immediate feeling about the diagnosis. I tell him that I suppose that my gut reaction is that if there is any way that the breast can be saved, I’d like to try that. His recommendation, therefore, is that I need a mastectomy to save my life, but that he would recommend adjuvant chemotherapy (in advance of surgery) rather than launching straight into surgery. He suggests that I attend a Dr.s forum to get more information. He also suggests that many people will try to advise me and tell me their story, but that I need to make decisions that feel good to me, based on my type of cancer and the advice I receive—to not let other people’s experience upset me or influence my decisions. I called the family and told them about the cancer (parents, Dawn, our kids.) I feel like making a flier and mailing it out to everyone so I don’t have to repeat the same revolting details over and over again. Jodi Shumway’s mom called me from Oregon. She is a survivor and wanted to encourage me, especially to choose a team that I trust.

Wednesday April 30: IMC Outpatient Building, MRI. Kellie, Jessica, Diane Edwards, Mr. Little and Bobette Anderson know about the cancer now. The flier idea is getting more and more appealing! Bobette left me a phone number yesterday and I called her tonight to talk about what to expect. Adam told Tammy. Ann Bawden came visiting teaching without an appointment and I told her. I got a sweet card in the mail from Jeff about strength. It was so touching to me somehow, that he would be that sensitive.

Thursday May 1: Dr.’s forum. All recommendations for mastectomy following adjuvant chemotherapy. Stage 2/3 multi-centric cancer, triple negative indicators 7cm tumor, plus another 2 ½ cm tumor. Suggested second biopsy. Consider all suggestions, make a plan. I felt peaceful, detached, as everyone discussed their individual areas of expertise. I was particularly interested in the chemotherapy study, where Dr. Shehadeh suggested that some patients benefited greatly from the new medications, Avastin in particular and ended up not needing mastectomy, but lumpectomy instead. We’ll consider participating in the study. He was the only one to present the suggestion of hope for saving my breast. I was given a lovely pink rose that I wanted to tear to shreds. I threw it into a glass of water at home, then into the garbage the next day. That’s hostile.

Friday May 2: LDS Radiology. Dr. Parkinson again. Second ultrasound shows that the “second tumor” is only blood from the needle biopsy. First good news! E-mail came from Nathan today telling me that he knew there was something up in the family, but that Jamilyn said I should tell him. I mailed the letter off to him that I wrote yesterday, explaining everything. I really hate being the one who is making so many people feel worried and sad.

Saturday May 3: Blake and I discussed the chemotherapy study on our way to Logan. I suggested that I am going to “will” myself well—that I need to try to think like I’m not willing to be sick. Tammy and I talked today. We both cried a little. I haven’t been able to do that.

Sunday May 4: Blake, my dad, Jon and Adam gave me a really comforting blessing. I’m never troubled with the idea that I might die. I’m interested in preparing to handle the necessary procedures with dignity (whatever that looks like!) Ann Bawden gave me a crocheted “guardian angel” at church—a sweet, old-fashioned dollie that I'll cherish. I finally met Radu on IM today and was able to tell him. He was devastated, very frightened, angry with God. I also wrote a letter to Nathan.

Monday May 5: Tammy’s mom called me. She was so kind and positive. She's happy with the decisions she made that kept her alive. She's doing great. I love Gwenn. She never seems down.

Tuesday May 6: Second consultation with chemotherapy oncologist regarding study. Very stressful day, since I was supposed to be finished considering and signing papers. It’s boiling down to the remote hope that I won’t need a mastectomy in the end and the desire to give myself every possible chance to obtain that outcome. Dr. Reese’s opinion is a strong influence on me against the study. He wants a sentinel lymphectomy, which will delay this chemotherapy with Avastin for 28 days (not a choice). This surgery is scheduled and pre-registered for Thursday morning. Dr. Reese has “pulled strings” to speed this surgery. He just wants "clear margins" and an understanding of the nature of the tumor's reaction to therapy. Dr. Shehadeh will consult with him again about the advantages of me participating in the study. So much conflict! After the appointment, I cried. The car alarm upset me and then I spontaneously screamed in my car three times very, very loudly, until my throat was raw and my heart pounded. I don’t think I’m willing to lose control like that again. It felt scary awful. I walked with Kathy Pitt and told her about the cancer. She cried. The worst day so far.

Wednesday, May 7: Dr. Shehadeh consulted with Dr. Reese. He hadn’t realized that the result of the second ultrasound was blood, meaning that there was still only one evident tumor, not “multi-centric” as suspected. He said the MRI showed no sign of lymph node problems, that the study was a very good one, and the Avastin, if I get it, might just save my life. Both tumor and lymph nodes can be “clipped” in advance to show their locations. He said I should feel comfortable to go ahead with the study if I choose to, and the sentinel lymphectomy can be performed before surgery, after chemotherapy, if we choose, although problems in the lymph nodes might not be evident after chemotherapy. Appointments for remaining work are set for Thursday, instead of the surgery.

Thursday May 8: Haircut in the morning where Brenda Tolman and I talk about her cancer. She worked with Dr. Reese too and loved him. Met Kim at 1:30 for instructions about the study, which I signed. I had a CAT scan, echo cardiogram, chest x-ray, blood work and urine sample. The four additional needle biopsies and clips will have to come later. If the pathology shows that I qualify for the study, I’ll be “selected” and chemotherapy will be ordered. It takes two business days to arrive (Tuesday?) I was drained after the procedures. Blake and I went to a movie, “The Bucket List” which began with a 20 minute representation of two guys with terminal cancer, suffering the effects of chemotherapy! I had to go out of the movie and take a deep breath at one point. I just don’t know what to expect from my body that tolerates nothing well from Demerol to Percaset. I think I’m afraid for the chemotherapy. Kim called to say that she was able to set up the appointment for clips and biopsies for next Wednesday. That upset me because of how far away it is, and that I won’t be beginning chemo on Tuesday after all.

If the Avastin is the last thing administered on the regime, why can’t I have the sentinel lymphectomy anyway? Who knows?!! I want anything that helps us know more about how to make this stop.

Friday, May 9: Mother’s Day program at school. Almost all the parents know now about my diagnosis. Lots of well-wishers. Accepting condolences takes so much time and energy! Isn’t that a mean thought? Rachel’s mom was diagnosed with cancer in March and is having her second chemo today. Bobette has her second year cancer free anniversary and brought me a pink bracelet and a “chemo calendar” for smiley or frowny faces on chemo days. I talked to so many people. Amy will test my kids if chemo falls on test days. It took time to talk to her, and then Mr. Little. Ashley Anderson has cancer and she talked to me. Jodi Shumway talked again. We had to go to Provo for Math after school together. Long, bad day.

Monday, May 12: Another physical exam at Dr. Shehadeh’s office in SL clinic. He couldn’t find any suspicious lymph nodes. He said the tumor is about 7 cm now, larger than indicated at the forum. He encouraged me again about the study, expressing how encouraging the progress is with Avastin, which we hope I get to take. He repeated his opinion about surgeons being aggressive with surgery, radiologists wanting to radiate everything, and medical oncologists hoping that the cutting edge procedures will save more lives. He praised Dr. Reese, and his medical assistant praised him, saying that he is the smartest MO in the nation for the fifth straight month. I told my kindergarten that I have cancer.

Tuesday, May 13: I don’t feel well today. I don’t know if it’s nerves about tomorrow, or just stress from all that’s required of my time. After school I had a make-up math class, and there’s one again Thursday. My kids start testing Friday morning. Tests continue through next week. Following that, we have eight functional days of school left, one of which is Zoo Day. 52 report cards have to be assessed and completed. Chemotherapy will definitely begin this week or next.

Wednesday, May 14: 7:30 am in Radiology at LDS Hospital. Met Dr. Parkinson, who performed five needle biopsies of the tumor and placed a clip in the middle. A hematoma/fainting experience kept me longer than expected, but it wasn’t too bad—I knew what to expect. Later Kim called me from the study to tell me that I’d randomized into the study arm B1, which gives me the Avastin that Dr. Shehadeh hoped for. I’m extremely relieved about the selection. I feel the same peace I felt when I heard the recommendations in the forum. She plans to live!

Friday May 16: Dr Shahadeh called to ask why I wasn't on the chemotherapy schedule for Tuesday. He expected me to be on the schedule and was frustrated that he didn't know why I'm not. He sent Kim out of town to attend a meeting for him, so no one seems to know what's going on. Not a good moment to lose confidence in the competency of this staff! More delay, while cancer eats away at my body. I'm never going to get treatment. This tumor is taking over the whole world. Monday May 19: I called Salt Lake Clinic to ask why I wasn't scheduled for chemotherapy tomorrow. They were defensive, since Dr. Shahadeh had called right before I did. Apparently Kim had left a message for someone from the clinic to contact me about a complication with paperwork, but no one had. I can't have chemotherapy Tuesday. The study lab sent my stuff to Provo, and another Provo patient's stuff to Salt Lake Clinic. Also, the study needs to send an authorization for the study medication to be charged appropriately to the clinic and it hasn't arrived. Without it we would be personally charged for the chemotherapy and that's not how it works. The clinic needs an extra day to sort out the confusion and get ahold of that authorization. Scream!!! Kim called right after this to say that I'm definitely scheduled for Wednesday at SLCl. Everyone seems very apologetic. Their embarrassment doesn't soothe me. I'm probably dying of cancer by now....