MY IVF Breast Cancer Diary

I finally saw Dr Oratz today. I had heard about her since the beginning but never gone to her. She was very thorough, put everything in the computer even though it took longer than making scribbles. She was half an hour late and apologized for it. Her office feels more like a chichi gyny office than an oncology place. No sick patients on view, no sign of an infusion room. She disputed Boyd’s stopping Vitamin D, she wants to send the tumor for oncotype testing in order to make a more informed decision about my hormonal treatment. She said that people talking about Aromatase Ihibitors after 2 years instead of 5 years was the result of pharmaceutical company propaganda. She had zero interest in the estrogen metabolism work. She said that it was laboratory work and until it had been in a clinical trial was of no relevance to her whatsoever. She discussed the disciline of losing weight extensively and she was very thin and tiny, I felt like a gross pig standing next to her. She meseasured me and said I was almost 58 inches which means I am shrinking.

She is the first oncologist to insist on the genomic testing of the tumor since my pathology report shows a mixed bag. She told me to go vegan and that all the protein in the world wasn’t going to help my immune system. She said I received much more chemo than normal. And that we have absolutely no way of knowing why I did not metabolize chemo normally. She told me to do yoga becuz she has a very bad back. She said it would change my metabolism. She agrees with a low glycemic vegetarian diet. We discussed bisphosphonates at length and it is time for me to figure it out. She said that the bisphosphnates were as important as the tamoxifen. No way to know if insurance will pay for the oncotype testing as she is using it in a way that has only been recommended for less than a year; in order to fine-tune hormonal therapy treatment.

 We discussed bisphosphonates again. She said it was just as important as the hormonal therapy and reduced risk by as much as 20%. I don’t know what study she is looking at and must ask her for it. 

It is all a bit discouraging as I seek a doctor to oversee my estrogen metabolism work. Dr Boyd was interested but didn’t respond to any of my emails at all and I imagine requires follow up. I haven’t even started and I am exhausted. It is disconcerting to be the one teaching the oncologists but I guess that is how it is with medicine. First the lab work and the studies, then the clinical trials and then the doctors…so they are the last ones to know in the chain of medical information?

Vic’s intense kidney stone pain for 6 weeks has brought him back to the person he was before almost 10 years on Wall Street changed him. He is appreciative and thankful for our life, our family and even our home. For the first time in many many years he is not complaining about anything. On the contrary he is seeing our children and perhaps me as I see us; as a gift from God.

And this is another Gift from God. To have my husband back no matter how briefly is a great gift.

The test results for the Estrogen Test and the other tests that Dr. Warshowsky ordered are back. Dr. Veltmann and I review at length. He disagrees with Dr. Boyd’s request for me to cut back on the B-vitamins and says I should just be more closely monitored by blood for all the supplement levels. We agree that I will be checked to see why my methylation levels are improving. He suspects that my stomach is not absorbing the nutrients properly.

But I have been told that for years about my ‘leaky gut’ syndrome about how my stomach does not absorb nutrients in a proper manner. I could have told him that a long time ago but since I have been taking the huge quantities of Calcium and the Calcitonin, my stomach has totally changed so no one asks me about it anymore.

We decide to cut back all the supplements I am taking to the original list. This is still extensive in my opinion but it is a return to something reasonable. After all, if the primary researcher of the theories that Dr. Veltmann is pursuing in treatment disagrees with all the supplements, and I have had absolutely no improvement from the original improvement, I see no harm in coming back to basics.

I see Dr. Boyd again but it is a relatively short visit as I tell him I have adjusted all the supplements. We agree that I should maintain a low glycemic index diet and try my utmost to lose weight.

I see Dr. Boyd again but it is a relatively short visit as I tell him I have adjusted all the supplements. We agree that I should maintain a low glycemic index diet and try my utmost to lose weight.

I am typically much more worried about diabetes than cancer. When you watch your own family members die of a particular disease the fear gets genetically transferred. Dr. Boyd’s tests for insulin resistance come back completely negative. I am greatly relieved. One less thing to worry about on the cancer emotional roller coaster.

Vic and I attend a fundraiser for trees in Greenwich. We have no idea how we were invited and we know that we will be asked for funds but we go anyway as we like the cause. It is a very high level soft sell fund raiser and there are only a few dozen people there at a country club in Greenwich. I meet the first person apart from my friend Jennifer who knows all about genetic testing and medicine. The first person apart from Veltmann who knows a lot more than me. We schedule a phone call and he fills me in on the industry. He tells me my idea about spreading the information about estrogen metabolism and my story is by no means crazy. I am encouraged.

The urologist’s office calls the day before the appointment and tells Vic to be prepared to have his stent removed in case the x-ray results show that it is possible. He takes the X-ray and then they come to get him for the procedure without telling us the results. I wait around wondering how long it takes to take several feet of plastic out of your penis. I hope that this will relieve some of Vic’s pain.

Ironically, the pain has drawn us much closer in a way that my pain did not. Somehow watching my struggles did not affect him in the same way as being in excruciating pain for 6 weeks did. I think that is the first time is his life he has ever really been incapacitated and it resulted in him questioning everything and becoming the man I married again instead of the Wall Street guy he has become the past several years.

It is unfortunate that he had to suffer so much but perversely I am happy that it worked out like this because I have had my husband back for a week or so and it is wonderful. I love him much more even than when I met him. Much more.

I alter my supplements based on the suggestions of Dr. Boyd. I schedule a hip scan so I don’t have to continue to worry about whether I know have bone cancer because my hip aches all the time and it will not stop. That will put to rest whether it is a muscle spasm, the Tamoxifen or cancer. I am tired of all the doctors and their constant disagreeing with each other.

My goal is now to take as few supplements as possible. I will wait for the results of all the tests I am taking before making any decisions.

After even flipping through Dr. Boyd’s book, I feel like an enormous beached whale. The fat rolls on my stomach seem formidable and I vow to starve myself. Of course this resolution only lasts a few hours before I regress. I begin to worry that perhaps I have become insulin resistant. While I have not had any refined sugar for months and months, I read his lists of foods to avoid and see for example, beets. For the past few weeks, I have actually gone out of my way to eat as many beets as possible. I have been buying them fresh, cooking them and eating them daily for weeks. My husband has asked me repeatedly what I am doing by saying, “Why are you eating beets all the time. You do realize that beets are a major source of sugar in Europe, don’t you?”     I ignored him assuming that a diet of huge quantities of fruits and vegetables was okay all around and yet it isn’t. More discretion is required. I call my girlfriend in Chicago, the one whose husband died an abrupt diabetic death, and tell her I am worried about my insulin resistance. Now she worries, too. I hate to tell her but I wanted someone else to worry with me.