Wah! Wah! I finally got to hold my baby boy after going through labor without an epidural. Since he was four and a half weeks early, he had been whisked off with the NICU staff to raise his low blood sugar. That was his only side effect (but they hadn’t let him eat) for being so early. But he was fighter, but skinny and long in all of his 6 lbs and 8 ounces! He happily latched on to the right breast but struggled with the left breast. We retired to bed that night while I got up every three hours to feed him in the NICU. However, the nurses there didn’t know how to help with the left side. We tried syringes and other things to draw out the inverted nipple. The next morning I met Betsy, the lactation specialist. Having had as many years as I have been alive (28), she knew what she was doing. However, she was the first one to say, ” I don’t want to worry you sweetheart, but I’ve seen a lot of breasts, and this looks like cancer. ” Of course, I was worried and scared! Other nurses helped me, trying to see what we could do to get him to nurse on that side, but he refused. I pumped every time I fed on the other side, however it didn’t help draw it out. My OB thought it was mastitis and prescribed antibiotics that never changed my tight tissue or the redness. Another nurse was very concerned about it being CANCER, while the others said,” Maybe as he grows, he’ll be able to latch on better.”
We were discharged two days later with an appointment to see my OB and R’s pediatrician in two days. I was getting used to having two kids without sleep. My OB looked at the ducts on my left breast and said, “Oh they look like they’re all working. You just need to worry about orange peel and that if it’s cancer. ” To which I said, ” Like this, ” pointing to the underside. I went away thinking that I was sure I didn’t have mastitis since I never had fevers or extreme pain. At R.’s check-up, his doctor was worried since he was hypothermic, which is low body temperature. After admitting him, I worked over the ten day period with many nurses to his pediatrician’s request to get him to nurse on that side. None of them ever suggested cancer and all said, ” You’re too young for cancer. ” I was 28 with two kids! However, cancer has no preference of age limits.
Meanwhile Betsy the lactation consultant kept calling me to see how things were going. She had talked to my doctor several times and was worried that he wasn’t more concerned. She suggested to get a second opinion. However while R. was in the hospital, I was tied down with a nursing baby and no car since we were having car problems. I got an appointment with a new doctor about a week later. He immediately said something was wrong since one side was big with milk and the other wasn’t. The guilt rushed over me as he asked me if I was good about my breast exams. After an ultrasound days later, they decided to do a fine needle biopsy to see about the mass tissue. The next day I was scheduled to see the doctor to find the results. However I knew it was bad when she called to say the doctor wants you to bring your husband. Immediately i started crying. My poor two year old kept asking why I was crying.
We went to the doctor to find out it was about 3 cms which he didn’t know for how long it had been growing. The next day, May 16th, 2007 we meet with a surgeon. After examination, he diagnosed me with Inflammatory breast cancer. My husband had done a lot of research at this point and knew more than I did that this was horrible news. However, my surgeon irritated my husband by telling him that he shouldn’t look at the internet for solutions and should only listen to the doctors!
After a incisional biopsy, we realized it was in my lymph nodes to which a PET scan was ordered. The PET showed it all over my left side, under the armpits and six spots on my spine. I was diagnosed as stage IV, Her2Nu+ . A MRI was scheduled to see if it had crossed over to the brain. The MRI was the first bit of good news as it was a NO!
I had a chemo summer with ten rounds of Herceptin, Carboplatin and Taxol. My breast started softening up after a week of chemo which my doctor normally said takes four-six weeks of results. I even started having milk coming out since my tissue was softening up and freeing the milk ducts. I got a wonderful surprise at the end of the summer, since my doctor cut two weeks of chemo out since I was doing so well. We did a PET scan which showed no CANCER. It was exactly what we had been praying for- a MIRACLE.
After about a three week break, I started into eight weeks of radiation. I had opted out of a mastectomy since I was metastatic and my doctor agreed that he had done surgeries where there was just scar tissue. I was worried about lymphedema. I started back on Herceptin in November after radiation and have been going in every three weeks since. I have had two more PET scans with clean results (nothing in the back either) which I couldn’t ask for anything more. Right now my doctor is deciding how long I should do Herceptin since experts vary in if metastatic patients need 1 year, 18 months or indefinitely. We are going to decide at the end of August, the one year mark, what we think is best. I pray for guidance to know if I need more or not. Part of me wants to be done, while the other part says if I need to do more to keep it away, I will.
I think part of my wonderful recovery has been to my eating habits. I avoid all refined sugar that is in almost everything. I eat lot of vegetables and a little bit of fruit. We eat whole grain pasta and avoid all white flour. I eat fish, shrimp and lots of produce. I was hard to give up sugar at first but it has been a rewarding sacrifice! I also take many vitamins and supplements. I have found that Paw Paw pills help withe cellular abnormaility along with Noscapine that works like the chemo drug, Taxol without the side effects.