That being said, he is not recovered from surges of intense pain and he is going back in for testing today. The surgeries have really taken a lot out of him and I feel very guilty about not being pro-active in seeking prevention techniques.

 We, as a family, and certainly I, should know that it is up to the patient to seek out the very best medical care and to understand that each medical professional has his specialty and that most can not keep up with treatments and research outside their specialty. We have been listening to his surgeon who we believe is the finest in New York City but clearly he is not worried about prevention as that is not his specialty.

 I have become distracted from keeping up on cancer research and still continue to fight against the new requirements of my life and still keep trying to return to my old life which was very hectic and certainly didn’t have anytime for constant medical research. I must know turn my attention to kidney stone research and the work of the Hormonal Cancer Foundation.

 I am seeking the balance between neglect of the most recent breast cancer information and obsession about the most recent breast cancer information. So far I have yet to find the balance. I seem to go back and forth between the two extremes.

Yesterday, we celebrated our 14^th wedding anniversary. Time is speeding by. The older I get, the quicker it goes. Our 11 year old son is becoming a teenager with all the hormonal and mood changes that go along and it scares me. A lot. I must find the balance for all of us.

 I am in the middle of my March appointments. I saw Dr. Oratz, the NYU Breast Cancer Oncologist, I had my mammogram, I saw Dr. Martorella, the endocrinologist and I saw Dr. Hollister yesterday. I will see Dr. Estabrook in early April. I also just took my estrogen metabolism 24 hour test and am waiting for the results to review with Dr. Veltmann.

 All is fine on the cancer front except that the lab forgot to run my cancer tumor markers. I must decide if I am willing to risk my veins again for the tumor marker test otherwise I have to wait until June. I think I will wait and then go back in for it. As you may know, I am unable to get blood from my right arm and reluctant to risk my left arm because of the lymphedema risk so the blood draw is a big consideration.

 My thyroid is not doing well again with the consequence that I am less able to tolerate the Tamoxifen that I must stay on for 2 ½ more years….Dr. Martorella is upping my thyroid dose and we will begin experimenting with that again. I have gained a lot of weight, am super fatigued again, the migraines are back and the night leg cramps too. Hopefully, we can fix my thyroid and be back on track again. Dr. Martorella says that the type of synthetic drugs that I am taken often wear off after a quarter or so and the doses must be upped until the body finds the correct level. We have agreed that I will move to dessicated animal thyroid if this latest increase doesn’t work.

 I also have to go back on Actonel for the osteoporosis as the last medications appears to have finally worn off based on the test results. I will start that in 2 weeks and see how long I can tolerate….

 Dr. Hollister has said I must keep my eye on the ball….that all of these side effects from chemo, radiation and Tamoxifen are little price to pay for being alive. He said it a little more diplomatically than that. He said, in fact, that he is optimistic about my prognosis, that I look good and that he thinks I am doing fine.  His practice is now officially part of Greenwich Hospital.

Ron and I have decided that I should stop trying to work for the foreseeable future and focus on myself, the kids, house and the foundation. I think that that is enough for the time being but while it doesn’t represent a change to anyone else it is a super big change in mindset for myself….

 All is well. I am really looking forward to partying in Boston next week.

Love, Babs

 P.S. I have gained over 10 pounds in the last several weeks.

P.S.S. I had the best mammogram ever because I put the internet radio comedy channel on speaker phone during the ultrasound and paid attention to that instead of listening to the clicking of the ultrasound technician while she measured all the cysts…potential tumors…..

 Like my thyroid for example. I was doing really well until Christmas for a time of about 3 months and then it started again. First, the weight gain, then the excessively excessive sleeping and worst of all for the past 2 months, the migraines and intense Charlie horses from the Tamoxifen. I now I should have contacted my endocrinologist months ago but he needs data; he needs blood. So I pushed off my visit with him until today. He was well out of date on my health and I can’t believe I had not informed him about all my various ailments. 

The blood work showed the story that I already knew; I must up my thyroid dose AND go back on small doses of Actonel and keep upping the dose until I can tolerate higher doses. My bone density exam in June is sure to bring surprises.

 Dr. Martorella explained that when you take compounded hormones, it is not unusual for them to work well for a few months and then ebb off in effectiveness. He said that upping my dose was totally normal and I was still in mid-range. We talked about thyroid problems post chemo and radiation and he added information that I didn’t know. He said that infertility medications can really wreck havoc with your thyroid. He said that he treats woman who come in with thyroid issues post fertility treatmets.

 I am sure it is all linked in. We talked about insulin resistance and Metformin and wondered if all cancer patients would take Metformin in the future. He said let’s look at your glucose markers next quarter and see if you are a candidate. He is such a gentle man and a gentleman.

 After my appointment, I drive to Queens to buy a lot of specialty foods that my oldest has been asking for. Today will be our first appointment with a family therapist. I always knew this day would come but I had hoped he would be older. It is so painful to watch him suffer with anxiety and depression. I hope this therapist can help.

This is tough.

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?

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

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.