MY IVF Breast Cancer Diary

It has been such a long time since my last entry. I apologize. I have been struggling with cancer fatigue and have been busy starting a new business to help out the foundation. I also became disheartened and for that I profoundly apologize because I have such a wonderful life filled with love and sometimes laughter.

It has been four years and a week since my diagnosis with Stage 2B breast cancer. It will actually be a few more weeks until the 4^th year mark of finding out about the lymph nodes metastasizes.

In December, a very good family friend died from ovarian cancer. She was the sister in law of my best friend and  I have known her since I was about 12. She had befriended me these past few years of cancer and I was struck by how far she went out of her way to be around and supportive of me. She was in remission last year and then she was not. Although I believe that we are all connected, I never considered her in my inner circle at all so it was very odd how I found myself crying hysterically after learning about my uterine problems in November. Although, it was and still probably is a reaction to the Tamoxifen, it was hard to hear about uterine and ovarian cancer risk and how if Tamoxifen was going to cause cancer, the damage had already been done even though it was probably nothing…… Nonetheless, in my entire cancer voyage I had never spent most of an entire day crying and feeling sorry for myself. Even as I cried I wondered why I was crying and attributed it to cancer fatigue….the syndrome of super intense, sick to death, of the constant monitoring, the drugs, the talks, the doctors, the blood work, the biopsies….otherwise politely none as cancer fatigue.

It all made sense the next day at noon, when my girlfriend called me to tell me that she had died the day before and that she was now walking into the house to see her brother. So indeed I had not really been feeling sorry for myself at all but mourning the death of my friend. My girlfriends kept telling me that she was dying and I kept saying yes, I know but I kept imagining that it was going to be months and months away. I kept imagining that I would have time to say goodbye since I was going to be there only a few days after she died. I sent her comedy videos and protein shakes and flowers and candy. I expected to get a laugh out of her somehow as I know it is the best medicine. And I was surprised when death came quickly even though they kept telling me it would.

I always become sad when someone I know of dies from cancer. Until now, mostly I haven’t really known the people I grieved for but I do now. What a horrible horrible disease and yet I now spend all of my time embraced by the disease as I try to promote the tests which I believe will save people’s lives.

It is a difficult relationship I have with cancer. It shapes and gives meaning to my life. Let us hope it does not do so to my eventual death.

Oh how I loathe Breast Cancer Month!! While I commend the fact that all this fund-raising is going on all over the place and it leads to promising treatments and it has de-stigmatized the disease, I find it a constant reminder that I resent. To see building lit up at the top in pink seems festive and I am not sure that is the right emotion. Anger, sadness, hostility, hope, perhaps….but such a bright springy color as pink just seems wrong…….even the NFL players with their bright pink accessories seem to exude festivity. Perhaps they should get a more sad color… to represent breast cancer…like vomit colored green or dying leaf brown or a sickly looking purple. Those colors would represent Breast Cancer better than the festive bright pink which should be reserved exclusively for healthy born baby girls. Now that bright pink represents breast cancer, how do young mothers decorate their girl’s rooms?

I celebrated my 3rd year of finishing cancer treatment in Boston this year. I don’t like celebrating the diagnosis date. It seems stupid to celebrate the day I found out I had aggressive breast cancer. I realize the celebration is supposed to be about still being alive but that should be everyday. I would rather celebrate surviving cancer treatment.

I went to Boston to go to a workshop. The guide of the workshop was wonderful but it was too aggressive of a trip as I had to have an endoscopy the day before I traveled. have an ulcer from taking the drug Voltaren (an anti-inflammatory)  daily for my migraines which I started during chemotherapy and never stopped because when I do I get horrible migraines. My neurologist insisted that I have an endoscopy in order to figure out if the ulcer was bleeding. It was bleeding, it is still bleeding and now I have to stop taking Voltaren daily and take drugs for a month to treat the ulcer.

To celebrate the end of my cancer treatment, I have been biking down the Hudson River on the Upper West Side of Manhattan yearly. The first year, my husband joined me. The second and third year, I went alone.  This year it was even better. I met all my girlfriends at my sister’s house and we went to a local restaurant. It is much better to be with my sister’s and my life long girlfriends than to be biking alone. It was a happy night but I was super super tired. Flying immediately after an endoscopy was stupid but I am tired of putting my life off to fulfill my medical requirements.

In order to take care of myself, I skipped a party on Sunday and went to the airport earlier instead of pushing myself further. No matter how well I feel,  at the end of the day, I am really frail and react with little stamina.

It really is great to celebrate surviving cancer treatment.  I only realize now what an immense accomplishment it was not to die from the toxicity. So Hip Hip Hooray.

It has been so long that I have written but I know exactly where to start. This summer has been one of the more difficult times that I have ever had. My eldest son, who had the adverse reaction to the vaccine in April, transformed from an elite athlete with a high tolerance for pain and deep competitive drive to an anxiety ridden reclusive little boy afraid of all of the things that he had loved all his life.

We did not travel this summer. We stayed at home and took care of him. My deep desire to resume seeing the world, my friends and my places, put on hold by another medication gone awry.

 I couldn’t help but compare going through chemotherapy and this past summer constantly although they had nothing in common except the medical trauma of all involved. I kept asking myself which was worse and I kept thinking that except for the thought that I would have made my children orphans, this past summer was harder. Watching is harder.

 I know understand how my husband hasn’t really recovered from the stress of cancer treatment and the fear or recurrence. I asked him and some close friends to help me gather data for the Hormonal Cancer Foundation, www.ivfbreastcancer.com site at the Susan B. Komen walk in Central Park several days ago. My husband arrived late and when he did arrive he was paralyzed. He couldn’t do it. He came back to me with his clipboard and spreadsheets empty and declared.” I can’t do it.” I said, “Of course you can.” And he said, “No. I really can’t. I can’t do it.” He was kept company by my dear friend Hope, constant companion in these tragedies. Her mother died suddenly of pancreatic cancer. She couldn’t do it either. But she did help. She interviewed and talked to dozens of women.

 It is really hard to bare witness. I couldn’t do it either before and tried to walk away from the cancer work but I can not. Even though this mission remains not much further away from where I started 3 years ago, I still can not drop it. I keep thinking that if one woman saves herself through the information I try to spread than it is worth it. But I feel alone. I rarely get emails from women asking questions.

 At the walk, very few of the women I spoke with understood what I was asking or why. Many women didn’t know what type of breast cancer they had. Between the 3 of us, we must have distributed over 500 cards and personally talked to over 200 women. I have not heard from a single one and it feels lonely out here. I want to make sure women are trying to make babies not breast cancer but it is hard to listen and obviously I am not communicating well.

 I redid the website at great cost and time but it seems to attract even less people than the original one which was so amateurish. The volunteers who I hired have disappeared and I feel alone again.

 And yet, I strongly feel that this information is critical to women’s fertility management. Most of the women I interviewed at the walk did not use either fertility treatments of HRT. I realize now that I should also have been asking them about their use of birth control pills as the older pills, such as the ones that I took 35 years ago were strong and not like the tiny doses that girls take today.

 So dear reader, I am whining and complaining today but I will recover and carry on. If you are reading, please send me a note at babs@ivfbreastcancer.com

 On April 24^th, my eldest son had his 5^th grade vaccine. Within 2 days his entire body was on fire. Every joint in his body was aching and he was crying continuously. My husband and I didn’t know what to do. I took him to the pediatrician and asked him to take every conceivable blood test he could think of before I took my son to a psychiatrist.

 It turned out he had positive ANA. We turned to the pediatric rheumatologists. The top one finally drugged him into some relief by giving him adult strength Relafen, an anti-inflammatory, twice a day. Finally, after seeing the top 2, 2 orthopedists, and a neurologist we figured out that he had had an intense adverse reaction to the Diphtheria, Pertussis and Tetanus vaccine.

 In addition to the joint pain and the constant crying, he also developed an acute sensitivity to touch or pain. His body began to misread pain so that a slight touch felt like an adult’s punch.

 In the meanwhile he developed an anxiety problem about his own body. All the doctors said that it was a totally normal response because that is when anxiety should come into play.

 Yes, but they aren’t living with him.

 These past 2 months have been amongst the greater challenges of my life. We passed the easy part, researching and researching and researching until we found the answer even though everyone told us to just accept the pain. I am doing a much poorer job of maintaining my patience with him. Instead of comforting him and empathizing, I am often leaving him to fend for himself.

 It has been so difficult to watch and yet I am fighting my own exhaustion every day as my response to the thyroid medication becomes poorer and poorer. I am not taking 4 times as much thyroid medication as I was about a year ago and the results are worse. The radiation damage just keeps giving and in the meanwhile, it is my son or rather my 3 sons who suffer.

How can I live up to the challenges that their lives presents to them when I still continue to suffer from the impact of the cancer treatment?

 Along the way in the process of taking my eldest to all these doctors, our history was given. The neurologist asked a lot of questions about how my son processed my breast cancer 3 years ago. She said that she thought some of his anxiety about his own body was a leftover worry about mine.

 I hear her comments ringing in my ears all day long. I have tried these years never to feel sorry for myself or to feel angry….and it has not been a struggle until lately. I knew pretty quickly after my diagnosis that my breast cancer was ‘self-imposed’ due to my fertility treatments. It was never a big mystery to my about why I had cancer or what I had done to ‘deserve’ it….In fact, I always wondered about the anger so many women seemed to have about the disease until these past few months.

 My anger and rage is bubbling over or is it my guilt that my actions did this to myself and then have made my children suffer so much?

 I need a higher thyroid dose….Thank you for allowing me to vent dear readers.

I have had a strange relationship with my hair ever since I shaved my head and watched it grow back extremely curly. After spending the previous 46 years trying to add volume and create some kind of a wave with permanents, curlers, braids, curling irons and special shampoos, my curly hair was a constant reminder of the change in my body and my cancer.

For the first year, ever single time I caught a glance of myself in the mirror on purpose or by accident, I cringed. The intense curls were an incessant reminder of my breast cancer, the chemotherapy and the damage done to my body. Chemotherapy affects the hair follicles and many people’s hair reverses texture after breast cancer treatment. I had been told by one particularly sadistic and misinformed counselor prior to my second surgery that I almost certainly would come out of chemo with permanently gray hair. When you are facing death, the color of your hair seems so trivial.

Later though, when vanity returns full force, I think how lucky I am to have returned to my natural color. In fact, I hadn’t seen my natural color since I was about 5 years old when my grandmother started altering it with lemon juice, and then Sun-In and the constant permanents. My hair was a big disappointment to her when it started changing from white to brown and she kept trying to change it as long as she had power over my hair.

With the intense curls, I thought about my grandmother every day and how happy she would have been to see me with the curls….finally.

As time went on, the intense curls stuck directly out of my head like Bozo the clown. I invested in a myriad of heavy gels and slicked back my hair every day making sure that it stayed slicked down with dozens of bobby pins. I also initially kept my own natural color for fear of the chemicals but vanity and habit won and after a year I went back to highlights.

Finally, it grew long enough that the weight of the hair made the top part wavy and the bottom part curly. It actually began to look like the hair that I always envied and dreamed of having. I grew to love my chemo curls. I no longer had thin limp hair that had to be washed daily or sometimes even more. I had full, thick, wavy hair with curls at the bottom that didn’t need to be washed daily. Never mind that all this bounty was due to the damage of my body. It finally was the hair that my grandmother had wanted all my life and I finally liked it.

 I refused to cut my hair at all. It was a protest against the head shaving and a little victory against death also I had a theory that given that my body had recovered somewhat that must mean that my hair follicles recovered somewhat and that if I cut my hair, the curls and body would disappear.

About 8 months ago I let the hairdresser cut ½ inch off the bottom. I was afraid that the curls would disappear but they did not. I was happy with my full hair that was longer than I had ever had since I was 5 years old.

Last week, I let the hairdresser cut an inch off the bottom continuing in the V-shape that natural hair grows in. My chemo curls are gone. The hair is still wavy but the kinky curls at the bottom that I thought looked so good are gone. Oddly enough, I will miss them.

24 May 2012

 Hello. I have been so so busy since I last wrote that I have been super neglectful of my blog. The first reason that I was so busy is that I had so many birthday parties I felt like a little kid.

 My birthday falls one month after my cancer diagnosis. Celebrating the date upon one received an almost Stage 3 breast cancer diagnosis has always seemed very dark to me. While I acknowledge that the celebration is supposed to honor the fact that you are still alive, so does your birthday.

 I didn’t really plan to have so many parties; it just worked out like that. On my actual birthday I went to a presentation at the twins’ school and then out to my favorite sort of close local restaurant. That was disastrous as the children were exhausted from the school outing and they never ever go out for dinner on a weekday.

 The second celebration was on Friday night. I had been wanting to go to the Cuban supper club in Manhattan for many months and finally swung it with some of my oldest and closest NY friends. The next morning I left for home and had my birthday dinner with my lifelong girlfriends at my favorite Thai restaurant. Then the other birthday girl and I went out to a blues club. The next day I went to the surprise party of my girlfriend which felt like it was a party for me since I knew everyone in the room most of my life or at least 30 some years.

 A few days later I hosted a film night at my house for my local girlfriends which felt like another birthday party. That weekend, I had a huge party for the twins’ birthday which turned into an all day family party. Then a week later I left for the Old Country and my gather hosted a big birthday party for me which in his mind is definitely a combination of my birthday and Boy, am I glad you are still alive party. That is especially true of my father who doesn’t ever celebrate or remember birthdays. That party was great because I even got presents like a little kid.

 The other reason I have been so busy is that my eldest son is horribly sick and has been diagnosed with episodic arthritis. My husband and I have spent several months thinking and telling him that all his aches and pains were anxiety and after his 6^th grade shot he went into unbearable pain. The twins birthday party my life has been nothing but doctors appointments and therapy sessions and trying to sooth him and trying to figure out what is going on. It has been one of the more stressful periods of my life. When the bloodwork came back with elevated auto-immune markers, I became more hysterical than I had ever done for my own diagnosis.

 We are still trying to get to the bottom of it but my strong, athletic son has turned into fearful boy in pain and it is agonizing to be so helpless and watch. I alternate between being incredibly supportive and telling him to pull himself together and stop worrying.

 As all of this goes on, I continue to struggle with my damaged thyroid. Apparently it is not unusual for the medication to work for a few months and then stop and the doctor neglected to tell me that we were still in the iterative process.

 I also had to go back on Actonel as my osteoporosis for which I am monitored quarterly has kicked back in. The toe and foot cramps have started and I am only on less than ½ the recommended dose.

 As Dr. Hollister reminds me, I must keep my eye on the ball and all of these side effects are immaterial because I am still in remission. That being said, it continues to be nerve wracking that I am not ‘settled’ in my treatment but that it keeps iterating.

 The Hormonal Cancer Foundation is slowly but surely coming along. I have hired 4 grant-writers who have been generous with their time and ideas and I hope they will begin submitting material soon. I have met with all the Board and they too have been incredibly generous and supportive. I hope to make more quick progress soon.

 I am constantly amazed and grateful for all the generosity of people. I am so blessed to keep meeting people like this.

Hello all,

 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…..

March is the big month. March marks 3 years of survivorship. I really prefer to celebrate the last day of September which marks the last day of my radiation treatment but March turns out always to be a symbolic month as well. The veins in my right arm have completely given out and I am still trying not to use my left arm. I already have breast lymphedema and I really really don’t want arm lymphedema so I save up all my blood work for once a quarter now when Dr. Hollister takes my cancer/tumor markers. My veins giving out has turned out to be a bit of a mixed blessing. I am no longer able to monitor various ailments more closely because the blood draw is so difficult so it means I neglect some things.

 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.