Archive for the ‘Long Term Treatment’ Category

MAY 1, 2010: MY TRIP TO CHICAGO: MY GRANDMOTHER’S BLESSINGS ON CHEMO CURLS AND YOU LOOK RAVISHING

Saturday, June 26th, 2010

Liam and I travel alone to Chicago. We had decided it was too strenuous for Sandra, the twins, Vic and I to go to Sean’s 1st Communion. The trip was to be extremely busy and having the whole family for such a short trip was too much for me. It was a very good thing I had decided that earlier because Vic was still laid up in huge pain with his kidney stones, the twins continunous sinus infection, ear infection and drainage and a cold on top of all of that was in full force.

Chrissy picked us up and we sent straight to her house to help prepare for the party the next day. We had dinner with Pen and my other best friend Ann at a very noisy restaurant. It was so good to have a dinner with three of my favorite people in the whole world. I was relaxed and happy. It has been years since I haven’t felt rushed in everything I did.

My girlfriends could not believe how crazily curly my hair was. When I was a little girl, my grandmother used to give me home hair permanents on a regular basis. She basically forbade me to have straight hair.  It was a huge challenge for her since my hair was thin and relentlessly straight. Also extremely disappointing for her was the fact that I started to go brunette after my first 3 initial years as a white haired blond. She and my mother began bleaching my hair first with lemon juice when I was 4 or 5 years old and it never stopped. My grandmother thought that ever one should look like Mary Astor and did her best to bring that about. When I didn’t have a permanent, I used to go to sleep with pin curls, curlers or braids so that my hair would be curly in the morning. My entire childhood was spent like this.

My hair was growing in medium brown with gray in tight, tight curls. As my hair grew longer I had hoped that the curls would straighten out but they did not. Having curly hair was almost as much of a shock every morning as being bald. I did not recognize the woman staring back at me with the thick curly hair bouncing up high off my head in all directions. I wet it down and put the thickest hair gel I could find on it ever morning pinning it all down with a multitude of bobby pins in an attempt to look more like myself.

The next day all of our family and my brother-in-law, Rob’ family came to the church to witness Sean’s big day. Rob’s family came up to me and said, “You look ravishing. How do you feel?” Then he turned to one of his sons and said, “Doesn’t she look ravishing.” I had only met him once before at their wedding and can’t imagine he remembered what I used to look like so I didn’t understand the complement except the missing part…”for everything you have gone through.” All Rob’s brothers and sister said the same thing. “You look good.” “You look healthy.” They said this with complete surprise. I am not sure what they expected but they have a lot of cancer in their family so I guess they expected me to look worse.

When my Aunt, my Mom’s sister, saw me the first thing she said was, “Look at your hair. Grandma would be so happy.” She ran her hands through the back of my hear where there were fewer bobby pins and said again, “Grandma would be so happy.”

I said, “Yes, Grandma is up in heaven orchestrating my chemo-induced follicular damage so that I have tight curly hair for the rest of my life. She is saying FINALLY.”

We all laugh about it because we know it is true.

With my aunt is my cousin who I have not seen in 20 years. We visit and get to know each other a little bit.

On my father’s side, one of my cousins who I have also not seen in at least 20 years is also there. We visit and get to know each other a little bit. It is relaxing to get to know them and relaxing to be at a party which I don’t host.

Liam plays with Sean’s cousins for the entire afternoon even after I leave to go downtown and visit with my girlfriends.

Five of us get together and they bring me the ‘game ball’ from the breast cancer softball benefit they did the summer prior. It is very touching for me but instead of crying, I laugh. We visit and laugh and share. For them it is a regular part of their lives but for me it is so special and means so much to see them and visit.

Pen watches me have the extreme hot flashes that I always have and asks me if this is how it always is….and I say, “Yes. All Day and All Night but nighttime is much worse.”

  • Share/Bookmark

MARCH 1, 2010: WALKING PNEUMONIA?

Saturday, June 26th, 2010

Dr. Hollister’s office told me to call my internist and that my having a chest cold is no longer within the realm of his prevue. (They said this is the nicest possible way, really)

I schedule an appointment for my internist the next day.

Dr. Veltmann told me I should have listened to him and wore a mask on the plane.

Dr. Asher, my children’s ENT specialist in Manhattan, was very worried and insisted I call Dr. Gaynor. Dr. Gaynor is impossible to reach and his staff is very unhelpful and border on rude. I find even calling his office to leave a message the most stressful out of all the offices I have to deal with which is ironic since there is meditation music and a lot of emphasis on the spiritual nature of healing at his office. At the end of the day though, it is based on the Upper East Side of Manhattan and his staff reflects this.

My stress level increases as the doctors around me panic at my condition.

The CIPRO begins to work.

I saw Dr. Paglia, my internist, for a breath of old school medicine. Seeing him is like walking into a Norman Rockwell portrait for real. He exudes a sense of warmth, confidence and caring. I like his long gray silver hair too.

He is the doctor who counseled me originally about picking a surgeon. He said, “Every surgeon you have seen (baring the first one who botched up the excise biopsy) is amongst the top 20 breast surgeons in the tri-state area and that means they are amongst the best in the entire country if not the world. No matter who you go with you will be amongst the best. If you like one of these better because she has blue eyes and that makes you feel comfortable and confident, than that is who you should go with.”

Given that I was doing so much better on the CIPRO he didn’t recommend a chest x-ray. He said, “I don’t hear anything. Whatever I see in the x-ray will not change my treatment of you and I think you have been radiated enough.”

He explains that the reason the Zithromax in South America didn’t work is because it was the wrong drug for bronchitis.

I tell him about how my immune system is not recovering and he says, “You have been POISONED. It will take a long time to come back. It takes a long time to recover from POISON.”  The way he said it was comforting. He talked a little about how it is still too early to know what the long term damage from chemo and radiation is. He told me some stories about lymphedema and how it is necessary to do the massage every day or the fluid comes right back. He told me, “You must focus on the positive. You are here.”

From him, it was comforting. The message is always the same. You are not dead so therefore you are doing well. But I want to thrive not just be ‘not dead’.

I talk to my best friend, Pen, about how I am doing absolutely everything right (except I eat white bread sometimes, white rice sometimes and my kids’ cereal frequently) and yet my numbers are moving at an expectedly slow pace. We contrast that with our other best friend who refuses to take her blood pressure medication and wonder who will die first. Even though she is not sick, she has had more stress than both of us. I Gretchen it is not her.

  • Share/Bookmark

FEBRUARY 29, 2010: WALKING PNEUMONIA?

Saturday, June 26th, 2010

On Saturday, I try to call my internist but can not find him.  I wind up at my children’s allergist who puts me on CIPRO and told me I MUST speak to my oncologist. She says my chest is very tight, very junky and I must be checked out for Pneumonia and get a chest x-ray right away.

  • Share/Bookmark

FEBRUARY 28, 2010: WALKING PNEUMONIA FROM AIRPLANE TRIPS TO SOUTH AMERICA?

Saturday, June 26th, 2010

On Saturday, I try to call my internist but can not find him.  I wind up at my children’s allergist who puts me on CIPRO and told me I MUST speak to my oncologist. She says my chest is very tight, very junky and I must be checked out for Pneumonia and get a chest x-ray right away.

I returned from South America last week. The trip was a bad idea except for one thing. For most of the trip, I did absolutely nothing except go to the gym or go for a swim or lie around. I actually even read a complete book for the first time in about 2 years.

I became sick from the airplane trip and did not improve even with 2 rounds of Zithromax. I returned and became much sicker. Dr. Geraci put me on CIPRO which has turned the mucus from green to white for the first time in weeks. I am being checked for walking pneumonia tomorrow.

It is back to the doctors for me, my children and Vic. My whole life seems subsumed by doctors. I would desperately like to go back to work but clearly I am too weak for much of anything.

Right before my departure, I spoke to Joe Veltmann about the latest rounds of Bloodwork. Both my blood and my 24 hour estrogen test show absolutely no improvement. My immune system is functioning at about 20% of the low end of normal. Despite all the supplements I am taking for estrogen methylation, my ability to methylate has not improved at all in the past year.

I am becoming quite discouraged by it all and having difficulty keeping up an internal good face. I know I must be grateful to be alive but it is frustrating and scary to not improve with all the efforts I am making. While my diet it not completely strict, it is not that bad and I do everything recommended.

I wonder if I would be worse off if I had done nothing whatsoever. Dr. Veltmann has confided that I am his first patient not to improve on his regime. This life off the bell curve is scary and tiresome.

I am worried about recurrence. How can I fight cancer, if my immune system which is supposed to stave off errant cancer cells can’t even fight off a little bronchitis?

  • Share/Bookmark

FEBRUARY 9, 2010: Dr. GAYNOR, INTEGRATIVE ONCOLOGIST & ZOMETA

Saturday, June 26th, 2010

I saw Dr. Iacobellis last Friday for Botox. I asked him to give me half of what he had the only time before 18months earlier. He was very sweet and heard all about my cancer stories and gave me a kiss and wished me well.

He kept going on about how he wasn’t charging me full price but it was awfully expensive. I don’t care. If I can look in the mirror and not cringe I will be happy.

I saw Dr. Gaynor last Friday. I had been really stressed out about preparing to see him because he was so incredibly aggressive the first time I met him. This time he was a completely different person and seems very relaxed about my condition. I was prepared to listen to a tirade about why it was critical I take Zometa but after hearing about what had happened since I last saw him he just said, “I can understand your fears about being especially sensitive and worrying about the consequences of Zometa.”

He also didn’t think taking bisphsophonates was the best idea.

Too relaxed. I asked about risk reoccurrence adjustment after making it 1 year and he gestured to some books behind us and told us to look it up ourselves on the curves.

He asked about my stress level, my meditation schedule and about all the supplements. Then he gave me a ton more. What is awesome about him is that he had an answer for every single one of my complaints whereas everyone else has just kind of shrugged their shoulders at them…

About my inability to think: Bacopa

About my skin drying and thinning: two supplements

About the fact that I can’t take the yeast concoctions for the immune system because of the yeast overgrowth: more graviola

About the Zometa: don’t worry.

He is an odd bird. Aggressive one minute and not the next. But there is no doubt that as Iacobellis pointed out: He is very very smart.

So I guess that is the end of the Zometa discussion. Everyone involved in my treatment has washed their hands of it. Everyone who was insistent that I carry on and do it, gave up with only a shrug when I said I wouldn’t. So I stressed and research and research and research for nothing? NO, I am comfortable in my decision and have found other people with whom I want to consult.

  • Share/Bookmark

FEBRUARY 3, 2010 – DR. ESTABROOK, THE BREAST SURGEON, DR. MARTORELLA, THE ENDOCRINOLOGIST & FEELING OVERWHELMED

Saturday, June 26th, 2010

Have been in a major funk ever since my doctor day last Friday.

Dr. Estabrook was quite alarmed at the size of my breast and worried about it. She said she had not seen ‘breast lymphedema’ in at least 5 years and that I had been over-radiated. She asked where I had gone and said that she considered it her responsibility over where she referred people.

She was very worried about the series of articles in the NY Times that has been reviewing over-radiation (and death) of patients because no one is really monitoring the technology closely. She insisted that I call Dr. Fass and tell him what had happened.

Of course, Dr. Freedman’s letter to Dr. Estabrook never materialized and I must co-ordinate the communication between all the doctors.

I don’t think that it was the fault of the machine… I just think that like all the rest of my treatments I did not respond well to the typical dose. I think it was probably the last few days that did it when I started breaking into hives again.

The lymph node buffer is now gone forever. I Gretchen that my heart hasn’t been damaged.

After the alarming conversation with Dr. Estabrook, I went to visit Dr. Martorella to discuss my bones. Vic came along. Vic has been totally out of it, he left the appointment wondering “Why isn’t everyone talking about your Vitamin D Levels all the time?” I told him that everyone was always talking about my Vitamin D levels. It is good to have him back in the conversation.

Dr. Martorella didn’t seem alarmed at all that I have chosen not to take Zometa. He has been using it for years and didn’t seem to think that it was the end of the world but then again he is not an oncologist.

We discussed 3 different levels of treatment. 1) Vitamin D in mega-doses. He expects this recent round of tests not to show dramatic improvement and thinks I must be on Vitamin D mega doses for quite sometime. 2) Actinel 3) A new drug called FORTEO which is a hormone that actually builds bone.

I had a great weekend except for wanting to kill Vic on Saturday because he hurt Liam. Then on Sunday we had a great day at home and bought an outside fireplace where we hung out and had dinner around the fire.

On Monday, I completely collapsed and spent the day in bed. I have no idea what happened.

  • Share/Bookmark

JANUARY 25, 2010: BREAST LYMPHEDEMA

Saturday, June 26th, 2010

Had my second treatment of PT with the Lymphedema specialist. She explained how there is a lymph node buffer that can be destroyed with radiation. The fact that I now have breast lymphedema means that my lymph node buffer is gone.

She also explained that there is a 2 month ‘shock’ period to the tissue in the armpit, breast etc after radiation after which is starts trying to regenerate. It is then that scar tissue, muscular damage begins to form. This corresponds almost exactly with the Thanksgiving date of huge pain as opposed to annoying pain beginning.

According to her, 4 months after you stop radiation, the tissue change can cease to keep altering and the final condition can be assessed. That is where I am now? So what does that mean? That I will never properly be able to use my arms again?

It would be great if someone would tell you this stuff but they don’t care about anything except saving your life.

  • Share/Bookmark

JANUARY 22, 2010: E-MAIL CORRESPONCE WITH CANCER CARE ABOUT LIAM

Saturday, June 26th, 2010

Hi Babs,

I did talk with our NY office to see what kinds of programs they have going on right now.  They do have a few family events in the works, but do not have flyers printed yet.  In order to see what workshops, educational material and services (either in CT or NY) would be best for your family I have few questions that may help.  

What have you told your son about your diagnosis and treatment?

I HAVE TOLD HIM THAT I HAD BREAST CANCER, SURGERY, CHEMOTHERAPY, RADIATION AND THAT IT IS GONE NOW. AN UNCLE IN LAW DIED A MISERABLE DEATH FROM CANCER WITHIN A FEW DAYS OF HIS LEARNING OF MY DIAGNOSIS AND I BELIEVE HE HAS ASSOCIATED CANCER AND DEATH. I KNOW ABOUT THE GILDA’S CLUBS GROUPS BUT I WAS AFRAID THAT GOING TO GILDA’S CLUB WOULD ACUTALLY RE-INFORCE THE DEATH VIEW.

What kinds of difficulties has he been having since the diagnosis? Problems at home, problems at school?

SINCE I HAVE BEEN BETTER; I.E. FOR THE PAST 2 MONTHS, HE HAS BEEN ANNOYED BY EVERYTHING, SAYING HE IS ANGRY WITH ME FOR THE SLIGHTEST LITTLE THING AND HE SPENDS A LOT OF TIME SULKING. HE HAS STOPPED WANTING PLAYDATES AND IN FACT ASKS FOR THEM TO BE CANCELLED IF I ARRANGE THEM BECAUSE HIS FRIENDS ANNOY HIM. THIS BEHAVIOR IS ALL QUITE UNUSUAL FOR HIM.

Has he met any other children who have a parent with cancer? If so what was that like for him? NOT TO MY KNOWLEDGE. I HAVE TOLD HIM ABOUT SOME NEIGHBORS BUT THAT IS ALL.

Has he received any counseling either privately or at school regarding the diagnosis? 3 DIFFERENT THERAPISTS (2 AT SCHOOL AS WELL AS MY OWN) HAVE TRIED TO TALK TO HIM ABOUT THE CANCCER BUT HE IS TOTALLY SHUT DOWN ABOUT IT.

The more we know the easier it is to locate the right resources.  I will be getting a packet out to you after I hear back.  I Gretchen you have a good weekend!

I HAVE READ HIM A FEW CHILDREN’S BOOKS BUT I EDITED THEM SEVERLY AS I THOUGHT MOST OF THEM WERE TOTALLY INAPPROPRIATE FOR HIS AGE.

I appreciate your help and guidance.

Yours truly, Babs

  • Share/Bookmark

JANUARY 22, 2010: BREAST LYMPHEDEMA

Saturday, June 26th, 2010

Met the Lymphedema specialist at Greenwich Hospital. She explained that you are born with a lymph system reservoir at birth. The reservoir is used for trauma or infection so that the body can clear fluid. We reviewed my case history at length and discussed the size of my breasts post-surgery. My left breast was not hugely bigger than the right until after radiation. The lymph node system apparently divides the body into 4 quadrants. Lymph nodes in each of the four quadrants will not automatically pick up extra fluid from another quadrant but the extra fluid from the weakened quadrant can be pushed over to another quadrant in order to clear the fluid.

She explained that radiation can eliminate the ‘buffer’ causing the breast to swell because the lymph nodes on that side can no longer handle the fluid. Since the lymph nodes were blasted during radiation they became weakened and can no longer handle clearing the breast.

So for me the goal will be to send the fluid in the upper part of my left breast to my right side and the fluid in the lower part of my left breast to my groin.

  • Share/Bookmark

JANUARY 21, 2010: MEDICINE

Saturday, June 26th, 2010

Had to take the twins to see Dr. Asher. He is SUCH a good doctor and has helped so much. My feelings about the medical field are so mixed.

Once again, I feel constantly pushed for time and torn between obligations. I feel a huge push to write quickly. I wonder what that is about?

  • Share/Bookmark