MY IVF Breast Cancer Diary

Every weekend, it is the same thing. I spend much of the weekend wondering how I can stand to spend another minute with my husband around the children.

I spend much of my weekend contemplating separation but I see no way out.

I Gretchen that my cancer doesn’t come back because of this horrible thinking.

I think I should go see a lawyer. It can’t be good for me to live like this and except for the period of chemotherapy it has been like this for years and years and years.

Every weekend, the behavior is erratic, sometimes violent, sometimes wonderful, changing from minute to minute, depending on the meal, the exercise, whether he has been eating crap all week or not…most of the time he considers the children a huge burden and then his mood changes and he is all loving and wonderful with them.

It is much worse than Sis or my mother or even Charles because their moods are stable for at least a whole day. Vic changes from hour to hour mostly depending on I believe his blood sugar level.

Maybe it is more like living with my Uncle Antoine…violent and loving.

Maybe he is a diabetic. He certainly behaves like one.

What should I do?

My cheek has started to swell up and it really hurts but I don’t page the doctor. I am tired of emergencies.

Dear All,

Hello. So much has happened in the past week 10 days it is difficult to summarize but I will try.

I had my 4 wisdom teeth out last Monday. All 4 were fused to my jaw bone and the surgeon said it was a difficult surgery. I am feeling much better now after having some migraine days from the anesthesia and pain killers. There is some dispute among the various doctors about when it would be okay to administer the Zometa. The difference ranging from 3 weeks to 3 months so I am still unsure when/if I will receive the drug.

I received the results of several blood and urine tests today and reviewed with Dr. Warshowsky, the integrative gynecologist who is overseeing everything from now on.

My blood is still very compromised not only in white blood cell counts but in ‘lymphocytes’/natural killer cells, I have the worst kind of yeast and fungus (presumably from the months and months on oral and IV antibiotics and my blood continues in its DNA pathway destruction. I am also still not ‘methylating’estrogen properly.

Dr. Warshowsky and Veltmann reviewed the new plan together to address these deficits. I will see Dr. Veltmann in Miami on Nov 30^th.

I briefly attended an integrative oncology conference last week which was fascinating but I have so much information to integrate I don’t know when I will begin.

I am very pleased that I have found doctors who will oversee and monitor the cancer in a much more aggressive way than leaving me to fate. Hopefully, I can turn my immune system around and have my blood recover normal function asap.

Love, Babs

Today I go to my 2^nd day of the Integrative Oncology Conference. Yesterday was profoundly moving due to the lunchtime speaker, the author of “AntiCancer”, David Servan-Schreiber, www.anticancerbook.com

Today I wear my breast cancer head scarf around my neck over my white t-shirt as I have always done…it is finally where it belongs.

For the past two days I have gotten up early to get ready for the conference and do chi-gung. I did not do chi-gung but I met my children again for the first time since diagnosis like I used to….It is also profoundly moving to see them when they get up.

Vic takes me to Dr. Tunick’s office. Beth is to meet us there and then she will drive me home while he goes back to work. Al comes into the room where the workers continue to work on scaffolding right outside and freaks out. He tries to get the nurse to close the 100 year old window and starts telling her, “This place is dirty. What are you going to do about it?”

I am having a cold flash and ask her for blankets. I have more cold and hot flashed when I am tired and when I am nervous. I can almost use them as an indicator of whether or not I should be in bed. But, I am not in bed; I am having another surgical procedure and extracting my perfectly good wisdom teeth to prepare for a cancer treatment that I have not completely decided to go ahead. I remind Vic that we are in Manhattan and tell him next time I have a terminal illness we will have to move to a clean city.

Dr. Tunick administers the anesthesia IV himself. For the very first time in all of these many treatments and blood tests, he gives me a tiny prick of anesthesia into my hand so that they place where he will put the IV is numb before he puts it in. I asked him about it and he tells me he demanded it for his own recent surgery and his wife’s treatments. He says, “I can’t believe something so simple for helping people through what is an unpleasant process is never used. It just boggles my mind.” He then mercifully knocks me out. 

When I awake, I am told the surgery is difficult for all 4 teeth because they were fused to my jaw bone. I don’t know what this means but he seems to think I will have more pain than I might have had. This is common for older people because wisdom teeth are usually removed in teenagers.

We walk to Beth’s car and she takes me home. I am bleeding and bleeding through the cotton ball bandages that they gave me. I try to talk. It is funny.

I go to bed for most of the rest of the day.

My Uncle John told me to see both an oral surgeon and a periodontist in order to assess the state of my mouth before taking Zometa so I go to Dr. Minoli’s favorite periodontist. I have learned the very hard way that a doctor’s visit that is a compete waste of time and money is the best kind of doctor’s visit to have.

Dr. Forcella examines me and says, “Are you here for a second opinion? Because if you are asking me if you should have your wisdom teeth extracted before taking Zometa the answer is yes. I have not had much experience with Zometa but I just had a patient here with ONJ who was taking Zometa and is currently on Tamoxifen. It was not a good sight.”

He says that he thinks that compromised immune systems seem to have something to do with the onset of ONJ and that the administration of Zometa prophylatically to younger women is not something there is a lot of data on as most of the people taking it so far have been older.

He says that it is not just about Zometa but that all bisphsophonates are problematic from the dental perspective but that is irrelevant when considering a cancer diagnosis.

He tells me that if I wasn’t going to take Zometa it would be crazy to take out my wisdom teeth as they are in perfect condition.

I see Dr. Tunick, the oral surgeon, who is like a brother to my dentist, Dr. Minoli.  My Friend, Beth, comes with me to keep me company. The nurse takes a circular x-ray and then we go into a dental room.  He is a very warm and friendly man. He seems a bit ill at ease initially but then warms up.

I tell him that Dr. Minoli was worried about one of the root canals that I had the prior year. He says, “That root canal is not a problem at all but these wisdom teeth have to come out before you can have Zometa. The half life of Zometa in the body is at least 20 years. Each of your wisdom teeth already have deep cavities in them so if anything else happens to them, even a filling needed to be replaced we would have to pull them at that time. The odds of your wisdom teeth being in fine shape for the next 20 years or so are not great, so they must come out.”

He is a surgeon at Memorial Sloan-Kettering so he is dealing a lot with Zometa-induced ONJ. He says that the incidence is probably around 20% for Zometa users and no where near the 1% they mentioned in the breast cancer clinical trial. He says that there is absolutely no way to predict who will get it and that there are 3 different stages of ONJ all of which are currently lumped together.

Stage 1) the gum recedes and the bone is exposed

Stage 2) More of the above but much more severe

Stage 3) the jaw ‘falls apart’ requiring it to be pieced back to together

He tells me that even though these are the risks there is no question that I should take Zometa if they have found that it acts like a chemotherapy agent. I must follow the advice of my oncologist. He very politely and diplomatically says that Cancer trumps not having a jaw.

I feel nauseous and keep looking at Beth who seems completely calm and nonplussed. I am really taken aback that I have to have all my wisdom teeth pulled and sink into the dental chair. I feel completely exhausted.

Dr. Tunick forces me to listen to the risks of having my wisdom teeth pulled. I don’t hear a word he says. His office is very uncomfortable. There is a construction crew on a dolly outside the window working on the building next door. The windows of his building are the very very old ones and don’t seem to close completely. I can’t concentrate and feel one of the now very infrequent migraines that I have coming on. The hot and cold flashes continue.

 He tells me that if I wasn’t going to take Zometa it would be crazy to take out my wisdom teeth as they are in perfect condition.

 I ask if I can go to a conference 4 days after the surgery. He says he thinks I should be fine by then. Only the first 2-3 days will be bad.

 I finally get out of the chair and we schedule a surgical date for exactly a week later. I like to have surgery on Mondays so that I have the whole week to recover if I need it while Sandra is there.

 Beth and I go for lunch at the Time-Warner building. She tells me that, “Having your wisdom teeth out is absolutely no big deal at all.”  I tell her that I don’t trust the opinion of someone who gave birth vaginally to twins at the age of 41. I am glad she is there. It really really helps to have someone else at these appointments.

 The relief that I had told Jennifer about only a few days earlier is gone.

I talk to Jennifer about Dr. Gaynor. I am so relieved to have met him and Dr. Martorella. I am relieved to talk to her because she is the only person, besides Vic, who actually understands my treatment and state of my mind. I tell her how worried I was about ‘refusing treatment’ even though Hollister wanted me to visit the dentist and that he wasn’t worried about the Zometa in the least that I have been very anxious about being ‘behind schedule’ in my cancer treatment.

She is nervous because she isn’t doing any post-surgical treatment, except for working with Dr. Veltmann, either. I tell her how great Dr. Gaynor was but she already knew about him. She is really on the ball and at the moment my only form of camaraderie.

I go to Dr. Hollister’s office for a Flu Shot.

Then I must go to Labcorp to have blood work for Dr. Gaynor.

I then to go to Manhattan see the endocrinologist. There is a sign on the gate of the building that this is a part of Memorial Sloan Kettering’s Long Term Care. That is comforting and bizarre all at the same time.  Vic is supposed to meet me there but he does not. He does not call or text. He completely forgets the appointment. He has been so steadfast, so involved, so concerned about every single appointment; I think he must be completely falling apart.

Dr. Martorella is a young and gentlemanly man. I tell him my story but I hesitate because I am not sure how much he needs to know in order to answer the question about Calcitonin and Zometa. I give him my list of supplements.

He explains the history of Zometa. “When we first started giving out Zometa, the recommended doses were too high so the proportion of people getting Osteocronosis of the Jaw was high over time. We then figured out that the dosing was too high and dramatically reduced the recommended dose. Furthermore, we monitor the recovery of bone building function before prescribing another dose. He tells me that I will take the “NTX” test today and then after Zometa is administered, I will take again 6 months later to see if my bone making function has recovered. 

He explains that this is an old drug and that it is well known but only recently has been used for breast cancer. He also explains that the population that has been using it has tended to be older so they don’t have great statistics on its use in a younger population.

 He clearly knows more than anyone about this drug than anyone I will meet in this city and much more than the oncologists.

 He is relaxed and friendly. Tells me not to worry about taking it as he will correspond with all the physicians regarding my bone function. He says that I can continue the use of Calcitonin but it won’t make any difference because Zometa is so strong it will nullify any affect of Calcitonin but it won’t add to toxicity.

 We agree that he will write everyone and will continue to monitor me for the next few years.

 I feel relieved to have met him.

I go for my cleaning. As I was so very often not brushing my teeth during chemotherapy I can’t believe I don’t have more cavities. Dr. Minoli and I discuss Zometa. He explains that the half life of the drug is at least 20 years and that it stays in your system for a very very long time. He also explains that there is risk with all of the bisphsophonates although Zometa is the strongest and the one with the most side effects. He says that he only has experience with older patients taking Zometa and he recommends that I see his colleague Dr. Tunick the oral surgeon to discuss the root canals that I had the year prior.

 He tells me that he doesn’t think I will have to take out my wisdom teeth as they are in perfect condition.

Vic and I meet with the integrative oncologist recommended by Dr. Warshowsky.

Dr. Gaynor’s office is the ground floor of a brown stone on the Upper East Side near the NY Hospital (Weill-Cornell) complex. His office has Indian meditation music piped through the entire area. There is information about the hospital in rural India (or Sri Lanka) where he works and a lot of information about Tibetan Singing Bowls. He runs a group of chanting meditation and there are pictures of the crystal made in water by the sounds of the bowls. The look like snowflakes.

It seems to me that he has incorporated vibrational medicine into his practice.

Dr. Gaynor has a very seductive southern accent. He exudes relaxation which is an odd trait from an oncologist.

He reviews my entire file and also seems to know about the genetic work that Dr. Veltmann has done. I tell him I am there to receive guidance about the next stage of cancer treatment; particularly the use of Zometa for 3 years. I tell him about how Hollister wants me to stop taking the Calcitonin in order to take Zometa.

“Would you have stopped treatment after I was hospitalized?”

“I give Taxol in weekly increments over 12 weeks. That is how I would have proceeded. I would also have given you a bone marrow test to figure out why your white cell count was not recovering with each treatment. ”

“How do you do that?”

“You biopsy the spine.”

“How could you have done that when I was as compromised as I was?”

“I like to obtain as much information as I possibly can while I am treating a patient. I don’t like working in the dark.”

We go to the examining room and he treats Vic and I to a meditation tape and a vibrational machine which replicates the sound of the voice onto the heart as if the person who has it on him were chanting himself. It is a high tech way of chanting without doing the chanting yourself.

On my way back to his office, I notice that everyone in his infusion room is either sleeping or in a state of deep meditation. Interesting.

The first thing he says is. “Has anyone talked to you about taking out your ovaries?”

“No. Everyone has said that if my menstrual cycle ever returns we would look at ovarian suppression.”

“Okay. We’ll we can talk about it next time I see you. “

He reviews Dr. Veltmann’s supplements and proclaims, “This is a good list.”

I tell him about the study. He listens politely but doesn’t seem overly interested. He hands me a document several pages long which contains the supplements that he frequently prescribes. He has underlined at least a dozen MORE items that he wants me to take in addition to Joe’s regime.

He tells me we must rebuild my immune system and that he will see me in a month and that is enough time to take to make a decision about Zometa and that I must get moving. He asks me to see my dentist.

I ask him about the Calcitonin and he says, “The only person I know who can answer that question is Andrew Martorella, an endocrinologist who does bone work. Go see him.”

I am overwhelmed by the number of items he has added to my regime.

Shitake Mushrooms

Rice Bran

Krill Oil

Betaglucan

Alpha GPC

NADH

Rhodiola

Royal Bee

Pro-Biotics

Pomegranate

A fiber,

A green formula,

A red formula,

Cacao and

Fermented Wheat germ.

His list essentially doubles the amount of stuff I am taking.

I am overwhelmed but I order everything the next day. I begin to worry about how much my alternative treatments are going to cost us.