MY IVF Breast Cancer Diary

I have been thinking about how to tell Liam about the cancer since the first minute I heard it when he was in the car with me. I have read about how to do it, I have worried about it and have decided to talk to him in the car as per expert advice.

We were driving to his final first communion practice and I told him, “Liam, I went for a check up and the doctor found a lump in my breast. They had to take it off and now that it is gone I have to take some really strong medicine that is going to make my hair fall out. So before my hair starts to fall out, I am going to shave my head. The medicine is going to make me sick and tired a lot and I might be really crabby.”

“Oh, that’s going to be weird. How long will you not have hair for?”

“It should start to come back around Christmas time.”

“That’s a long time.”

“Yes. But I will wear wigs and it shouldn’t look too bad.”

“Okay.”

“Liam, I want you to know that the name of what I have is called Breast Cancer.”

“CANCER!!! CANCER!!” He is shouting at the top of his voice. “You have CANCER!!!!!.”

Yes, Liam I have Cancer. Where did you hear that word before?”

“I can’t tell you.”

“What do you mean you can’t tell me. You must tell me. That is how you get stomach aches.”

“Cancer is what Uncle Mickey has and Uncle Mickey is dying.”

“Oh Liam. I am sorry. I don’t have what Uncle Mickey has. Cancer is a word that means many things.. It is a word like infection. There are hundreds of different types of cancer just like there are hundreds of different infections. I don’t have what Uncle Mickey has and I am not going to die.”

He calmed down just a little bit. I had completely forgotten about Uncle Mickey. My brother-in-law the perpetually inappropriate and never ending talker had just spent Easter with us talking about Uncle Mickey’s impending death in great detail.

Uncle Mickey was his uncle but essentially filled the role of father for my brother-in-law and faithful companion to my mother. He was an ever present component of their house in ways that neither of his parents or my father were a big presence in our lives. My brother-in-law, Rob, was distraught about his impending death and spent all of Easter vacation talking about it. I had completely and totally forgotten about it as I did not associate myself at all with him…but Liam immediately made the connection.

I tell him that I will keep him up to date on every part of my treatment. He asks if he will get it because I have it. I say, “No. It is something that only women can get so you won’t ever have to worry about it.”

He knows all about genetic inheritance because he knows his asthma, sinus disease and reflux all come from his father. He knows all about medications because he takes so many and he knows about their side effects.

Well, at least it was out in the open. Liam went into the church while I parked the car. That was the most difficult thing I have ever done in my life and I find even writing about it to be quite painful.
I worry about being around for my children. I am so old in having them I really wonder if it was a mistake but to even think such a thing is to negate their existence. I worry about whether or not I will be able to stick around for another 30-40 years to take care of them and be a part of their lives.

I consider my body not my own but something that must be dedicated to being around to being part of their lives. Every doctor’s appointment, every surgery, every IV, doesn’t matter because it brings me one step closer to my goal of being part of their lives.

It was wrong to keep Liam in the dark these past several weeks. Of course, he wasn’t in the dark but was rather manifesting my own anxiety through his nightly attacks..but I couldn’t see how to tell him until I knew what was wrong and it took so long for the plan to be clear and all the tests to come back. But it was wrong and I still have not figured out how to protect them from my own feelings on the matter.

I call Dr. Veltmann as per Dr. W’s instructions. We play phone tag for the day and then I finally reach him as I am pulling out of the Rye YMCA’s parking lot. I had gone for my post excise biopsy swim. I go swimming every day as a form of tranquilizer. It is the only thing keeping my sanity going.

“Hi. Dr. Veltmann. Dr. W suggested I call you because I have just been diagnosed with an extremely aggressive form of breast cancer.”

“Did Dr. W tell you about my breast cancer study? I am conducting a breast cancer study that is funded by the National Institute of Health. I have approximately 60 women in the study. The study has been going for about 5 years” A breast cancer study that sounds promising, I thought.

“No. She just told me to call you because you alter people’s bio-chemistry.”

He laughs and then asks me the basic information about the cancer and myself. I tell him I am 44 years old and have GARDEN VARIETY MOST AGGRESSIVE BREAST CANCER, Grade 9, Invasive Ductal, etc, etc,

Once I finish with my pathology report, the first question he asks is, “Have you had any unusual bleeding?”

“Yes. I have had horrible problems with unusual bleeding. I had 3 rounds of fertility treatments in 2004/2005. I was trying to retrieve eggs to get a surrogate pregnant. Finally I was unsuccessful and I went the egg donor and surrogate route. A few months after I completed the fertility treatments I began to bleed irregularly. Sometimes I would bleed all the time and then sometimes I would stop and almost miss a period. My periods became extremely heavy. I went to a variety of different gynecologists and complained about the bleeding but they all dismissed my complaints as part of ‘peri-menopause’.

After the irregular bleeding started, I then began to gain weight and no matter what I did it wouldn’t come off. This weight gain was after weighing the exact same weight (give or take 5 pounds since I was 17 years old.

I finally found a doctor who was willing to help me and was also concerned about the bleeding. She said that if I continued to bleed I would be at risk for uterine cancer. She put me on bio-identical hormones. They did nothing except make me tired.

Then I went on the birth control pill and while that controlled the bleeding, I had horrific migraines so I stopped that. We were just discussing next steps when I was diagnosed with the cancer.”

Dr. Veltmann said, “Yes, many of the women in my breast cancer study have similar stories.”

Me: “Do you think that I have cancer because of the fertility treatments? I have never been the same since I took those shots.”

Joe: “My thesis would be that you probably have SNPs on your DNA that do not allow your body to methylate estrogen. The problem started and then was most likely kicked into even higher gear by the stimulation of the Hormone Replacement Therapy and the Birth Control Pill regardless of how small the dose. Fuel for the Fire.”

He explained how he worked. He would mail me a questionnaire, mail me tests and then we would proceed. He would alter the DNA through the use of nutrition, supplements and when required pharmaceuticals.

Me: “How many of the women in your study have had a reoccurrence?”

Joe: “Zero.”

Dr. Veltmann tells me he will be sending me blood test kits in the mail and a patient intake survey by e-mail. He tells me how he works with people in the study…on a cost basis and I hang up after telling him my joke about the unwashed grapes.

I began to cry. Finally someone who knew why I had been bleeding these years after so much mystery. At the beginning of the year, my New Year’s Resolution had been to get to the bottom of the bleeding and now I knew. I was bleeding because the estrogen in my body couldn’t exit. This toxicity developed into cancer.

An answer. What a relief!! Someone knows why I have been bleeding all these years AND they know why I have cancer. The unwashed grapes theory is no longer necessary.

Sitting in that parking lot, I had absolutely no idea how much of a relief meeting him would be. Knowing exactly why I had cancer would be such a different way to live through the disease….but all of that fear was yet to come. At this point I was still in shock.