MY IVF Breast Cancer Diary

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.

Dr. Boyd is the first oncologist I meet that is genuinely interested in the list of supplements that I am taking. He is the author of Cancer Recovery. He is very familiar with most of the items I am taking and has strong opinions on my list.

But the first thing he discusses is my 20 pound weight gain since August when I started taking Tamoxifen. He explains that the weight gain is so much that it may negate the benefits of Tamoxifen. He quotes multiple studies showing that the morbidity rate of women with breast cancer with low BMI’s is lower than all others. He explains that the single most important thing I should be doing is maintaining a low BMI. IN other words, I need to drop at least 25 pounds.

We discuss the weight gain and he explains that a common side effect of chemotherapy is insulin resistance. Given the history of diabetes in my family, it would not be uncommon and would explain the weight gain. He tells me to do research on the drug Metformin. He also strikes terror into my heart. All my life, I have been afraid of diabetes. Much more afraid of it than of cancer as it has been woven into the fabric of my daily life. All of my father’s brothers and my grandfather have died miserable, horrible diabetic deaths while we watched. Before their deaths, there were the terrible mood swings and violence. The words insulin resistance get my full attention.

My weight gain is partially a side effect of Tamoxifen, partially the result of my ‘chemical castration’ or abrupt entry into menopause and the full impact of menopause on my metabolism and partly the result of portion control from the NO WHEAT, NO DAIRY, NO CORN, NO WHITE RICE, BLOOD TYPE B, LOW ALKALINE DIET that I attempt to follow. Unlike most people who can fill up on a big thick steak, I never feel full without bread or pasta. Since I began strictly following all my proposed diets. Dr. Boyd gives me a flyer telling me to exercise at least 5-6 hours a week to decrease my recurrence risk.

We review my supplement list for almost 3 hours. He explains that high levels of folic acid can actually lead to cancer. He stresses that I can not take Vitamin B at the current quantities because although it may redirect DNA pathways, it may also facilitate the tumor along the way.

He speaks convincingly and with a LOT of data. We agree to follow up with Bloodwork and he will speak to Dr. Veltmann.

I leave his office shaken. Who am I to listen to and who can I trust with my recovery and my life? I can not take the views of an oncologist who has clearly studied supplements extensively lightly. I must consider them seriously and research.

Dr. Boyd gives me his book to further my understanding of his methodology.

Today I speak to Joe for the first time in weeks about my site and Prof Cavaliere at University of Nebraska. Joe tells me that a woman called who has breast cancer and had done fertility treatments. We assume she called after reading my site. I feel gratified that all my hard work and neglect of my children has paid off.

If my story can save one other life it is worth it all, but I am greedy. Now that one has called, I want many more to investigate. I will never know if they call Genova but I have done some research and will be able to put up more testing companies within a month or so.

I spoke to Prof. Cavaliere about his more recent work. He explained his lack of funding and I promised him I planned to promote my story and hopefully someone powerful enough would learn about his work and help him help others.

When Jack was kidnapped in Asia, I thought I would never see him again. Our mutual close friend Susan was always hopeful about this situation. She works on a big newspaper and always knew what was going on long before me. I would listen to her updates and how she knew he would be released and I would think she was completely unrealistic and sheltered from reality.

I put up a picture I got from one of the news releases next to my desk so I could send him energy whenever I looked at it. I figured that even though both Jack and I had lost the ability to pray he would receive the energy somehow and it might offer him a nanosecond of relief in whatever miserable hell hole he was. I tried to do it many times a day.

He was released a few weeks after my diagnosis and came up to see me a few days later. I  thought for sure I must be dying because he had just been through the most horrific experience and he came all the way over from far away New Jersey to see me instead of me going to him. I showed him my shrine to him.

My father came to visit a few days after Jack’s release after my first chemotherapy and brought with him all kinds of statues of Jesus and Mary, holy water, holy incense and holy oils from the Old Country. He told me stories about the nuns in the convent praying for me and all my relatives praying for me.

My cousins came out of the blue with e-mails and they were the ones who kept in close contact even though most of them I had not seen in 20 years.

Sometimes, when I was very sick, I would just count all the people supporting me in the universe on both sides of the grave. The well wishes and energetic gifts through them from God or from God through them kept me afloat. Bouancy in the word and the gift.

Vic and I finally went to see a doctor in NYC about his kidney stones on Monday. That was almost a month past the initial crisis. Dr. Delpizzo a very young guy, probably the first doctor younger than me whom I have trusted, explained how badly the doctor at Greenwich messed up Vic’s treatment and scheduled surgery for asap. HE explained that if we had gone to him first, he would have immediately scheduled to access his kidney through his back because the stone was way too big for laser surgery. Given that he has already had 2 surgeries, he was going to try to see if he could get it out through laser.

ASAP was Thursday. I sit in the recovery room by myself. A surgery that is supposed to take about an hour, which the surgeon though would take two, has taken almost 4 hours. Dr. P came out to speak to me and show me all the stones he retrieved which was basically as much as were ever in there. Clearly, Dr. U in Greenwich was not able to take anything out which was consistent with his first reporting to me immediately after surgery.

I am racked with guilt. How could I have let my husband have surgery in Greenwich after the botch breast biopsy in Yonkers. My extreme anxiety that I felt as the 2^nd surgery was confirmed was completely justified.

I feel horrible for failing him and I hope that this will be the end of it for the time being and that they will let me see him.

I don’t know how he went through everything alone because this is really difficult. Living without family is ridiculous and I believe too much of a burden. Our friends have medical fatigue from our stories. No one else can tolerate this much crisis. NO one has even asked about him for the past week because the story is going on and on and on.

The surgery has taken so long that all outpatient are closed.

From the day they put the first chemo IV in my arm, I have had mind-bogglingly strong hot flashes. The medical word for what happens when chemotherapy forces a woman into menopause is chemical castration. It is basically the same as having a hysterectomy because the change is abrupt in the same way as a hysterectomy and the body is in shock.

It has taken me an entire year to figure out the pattern of my hot flashes. When it first started, I used to sleep with an ice bag. Most of the time my mother brought me the ice bag but when treatment stopped in October and the winter set in, I stopped using the ice bag and instead sleep with a towel that I use to wipe the drenching sweat off my face and body at night. That is not to say that the hot flashes don’t happen in the daytime; they do but at night sometimes it is just crazy.

They seem to be the worst when I am exhausted. The only thing that ever helps and sometimes not even then is acupuncture as I am forbidden to take most of the supplements that could help and too scared to take the ones on which there is not sufficient information.

The next day I find that my sister has not followed through on her initial phone consult with Dr. Veltmann. She has severe endemetriosis and now that she is older has all kinds of bladder problems. She goes weekly to have steroids injected into her uretha to try to tame the inflammation in her bladder. It is clearly not working.

And yet she has not followed through on any of the genetic tests that Dr. Veltmann sent.

She and I fight.

My website now has over 1300 visitors but I don’t know if any one has contacted Dr. Veltmann. I am clearly not explaining the genetic snps properly otherwise how can people continue to risk their lives when a simple test offers so much information.