Monday, December 24, 2007

Update




I finished chemo therapy on December 20, 2007. Upcoming is a heart test on December 27th, an MRI on Jan 3rd and a visit with my surgeon, Dr. Borgen, on January 10th. After that sometime, surgery. That's all the news that's fit to print. Today's photo are some of the staff from Oncology. Have a happy holiday season.

Thursday, December 13, 2007

More Taxol tales


I had my 7th chemo treatment on December 6th; my last one is coming up on December 20. The side effects, again, are pretty minimal. The peripheral neuropathy is definately tiresome, but doable. Allot has happened lately and so I will need to write more later. The bald picture will only be up until early next week and then I'll switch it.

Sunday, November 18, 2007

Yoga

Yesterday I had the opportunity to take the Therapeutic Yoga for People with Cancer or Chronic Illness workshop at the Integral Yoga Institute www.iyiny.org. It was a one and a half hour restorative yoga class using props in the tradition of BKS Iyengar and it was great. Deborah Madhavie Matza, RN and Esther Jyothi Larson were the instructors. They'll be giving this same workshop on Monday December 10th at the institute. There are a variety of Hatha yoga classes available at the institute, as well as workshops on a variety of topics, all with a yogic twist. For people who've never done yoga before there is a free introductory class on Saturday mornings, a free deep relaxation class on Friday's at 5:30 and free open meditation Monday thru Saturday at 12:15 and Monday thru Thursday at 8:30 pm. The institute is located on 13th street in West Village in Manhattan.

Saturday, November 10, 2007

Hi Deni....dearest new niece!!

Hello Honey,
LOVE your new wig.....you sure are beautiful!!! Linda found a perfect mate!!! Dan had to help me get on this Blog...I sure goofed....Guess I'm getting old..but I'm getting there.
It was soooo good talking to you the other day!!! You sounded wonderful and we are thrilled you are doing so well.
Making this a short note as I'm afraid I will lose it....as I usually do. But, promise to write again soon. Keep up the good work, dear niece and know that we love you and miss you and Linda very much.
Love, Hugs and Kisses,
Mary Ann and Dan XXXXXXXXOOOOOOOOOOOOOOO P.S. Hope you get this!!!

Friday, November 9, 2007

Chemo 5; Day 1


Yesterday I finally had my private room! But, yesterday I took the party with me—my spousal equivalent and my health care proxy best friend and so it was a party. There isn’t allot to say about the new round of chemo yet. I’m on taxol with a bunch of different complementary drugs for nausea and for calming the stomach histamines and some benadryl thrown in to prevent anaphylactic shock (which lucky for me I didn’t get!). The benadryl knocked me out for about two hours yesterday afternoon and then kept me up last night! But, hey, life is still good.

You know, I do have some side affects-sweating, sore throat, some canker sores (but maybe that is chemo mixed with way too much pizza-I’m thinking-‘cuz I didn’t have those mouth sores before the pizza!) , running drippy nose and eyes, a little fatigue and tiredness. The “chemo brain” is mostly gone. I feel good today.

Check out the new picture—this is a wig I got free from Cancer Care. Keep in touch, it means much to me.

Friday, October 26, 2007

The End of a Cycle

Yesterday marked the end of the A/C cycle for me. And I am thrilled. In case you didn’t know the A/C cycles are the “big guns” of chemo therapy—4 cycles, one every two weeks of very powerful drugs; reference my last post for more details of that. And my “chemo fantasy” came true—I was in a semi-private room, alone and able to meditate, journal and listen to a relaxation tape—at least until noon when company arrived.

For the most part the side effects of the medication have been pretty minimal for me; I did lose most of the hair on my head and this week you can see a picture of me in a wig! I won’t scare you with bald Deni, though I may make a picture for my personal file. And I do get tired, especially the evening of the chemo and for several evenings afterwards and a little foggy in the brain. I told the doctor it felt like “being on drugs”! But, that all passes fairly quickly, and I attribute this to the fact that I exercise, do yoga, meditate, pray, relax and am following a healthy diet for which my lovely and wonderful neighbors are still contributing meals on a daily basis. (oh, and I went square dancing this past week too).

Doctor Borgen examined me and the prognosis seems good at this point. The tumor appears to be shrinking. There are two possibilities with this—the tumor can either end up looking like swiss cheese or it can shrink to a smaller, less invasive operation. Option one is a mastectomy and option two would be a lumpectomy. Two weeks from now I start the 4 cycles of taxol and the other drugs that go with that. Then there’ll be an MRI at the end of this cycle. It looks like surgery may be at the end of January or in February. We won’t know that until after the MRI.

And, the kindness of people is still amazing to me. Not a day goes by that I am shown how kind people are. Friends and family continue to send me cards with well wishes; my aunt sent me a card and a package with bandanas and a head scarf and a catalogue with wigs in it. My mother sent a “fun” package full of interesting things to use. My neighbor picked up the packages the drug company sent. Other friends send articles regarding various cancer related topics—diet, well being and the like. My neighbors still bring food. Other friends shop for me. I’ve even done laundry at several neighbors’ homes. Many people have offered to do something and I have them on a list in case something comes up. My friend from New Jersey continues to be my health care advocate. My sisters, my aunt and my mother sent me money recently. I’ve talked with some at the American Cancer Society, another person who teaches therapeutic yoga and gotten information about various classes and free things thanks to my friends at the Integral Yoga Institute. Another friend works with me for a reduced rate. Several of my clients give me extra cash. I get allot of info at cancer care through my social worker there. It really does take a village.

And, of course the staff at Maimonides makes an otherwise unpleasant experience bearable. It goes without saying that I have a great doctor and great oncologist. And, the gals at the front desk are so kind to me and I love their sense of humor. All the nurses and technicians are fun to be with too.

Four down and four to go!

Thursday, October 11, 2007

Chemo tales from the trenches


A friend of mine recently asked me about the chemo experience and I thought I would share some of how that all goes down.

Fantasy: I read some sites on the internet about what to expect during chemo therapy and had this fantasy that I would be in a quiet, softly lit, separate room. In my imagination I would be able to journal quietly, reflecting on my life. Then I’d listen to nice quiet music and my relaxation tapes and perhaps meditate. This experience was going to be a kind of zen experience

Reality: It’s really more like going to the barbershop or the beauty shop. It’s one large well lit room with the nurses’ station in the middle. There are two main areas on each side of the nurses’ station with several semi private spaces off to the sides of one area. Those semi private rooms are more like the spaces at the emergency room—side by side separated by curtains. The chairs look like barbershop chairs. One area has 4 chairs arranged in more of a square; the other area has six chairs in a semi circle. An I/V tower and a t.v. and one guest chair is located near each chair. You can see everybody and hear their televisions and/or conversations loud and clear. And the place is a buzzing with lot’s of noise and lots of activity. I do journal a bit and listen to my relaxation tape when my friend goes and gets a sandwich from the deli/gas station. Otherwise we hang out and talk and hope to see the doctor.

Technical Info: About 10 or 15 minutes before I arrive, I take Emend—anti-nausea drug. We (my very good friend and volunteer health care advocate) arrive around 10:30 and we’re actually seen right away. First the nurse checks your vitals—blood pressure and temperature. Following this, the nurse attaches the “gripper" to the port. It’s a small device with a hose on it so that the intravenous drugs can go in. Then they take blood to make sure everything is ok to go ahead and send it down to the lab. If everything is ok the lab mixes the chemo meds.

First I am given a saline solution intravenously along with the first dose of dexamethasone. Then the chemo drugs are administered. Today I finished the third cycle of what they call the A/C cycle. It’s Adriamycin/Cyclophosphamide. The Cyclophosphamide is administered very slowly by the nurse via a very large syringe type device through the port that was installed in my chest; and, Adriamycin is administered intravenously through the same port. That takes about 2 hours. So between all these procedures and chatting up some of the other clients and chatting with my friend and eating lunch I usually get out between 2:15 and 2:45.

Follow Up: To avoid nausea, I take a lower dose of Emend and dexamethasone the following two days.

Side Effects: I am sure there are many, and I have a fairly good idea of what they may be, and a list, if I want to look at it; but for the most part, I don’t ask. Why make it worse, right? So for me, I am a little tired in the evenings after working physically harder all day than most folks. Oh and maybe I get that bad taste in my mouth occasionally. I think the oncology staff at Maimonides is great from the receptionist all the way up the line. And, I am here, have great friends, family and neighbors and can still pay my bills, so what the heck.

Tuesday, October 2, 2007

good people in the world

Reading Deni's posts helps to give me perspective, and reminds me that there are good people in the world.

Found this today, it is pretty funny. Pokemon Cards on EBay.

julie

Saturday, September 29, 2007

Hey Deni,
So glad to hear the good news. You sound good, strong and good. You go girl! I think a wig might be fun. We're also glad you're being so proactive with your care and recovery. The perscription thing is great. You've really done your research and have taken care.
We're sending you love, light, prayers and support.
Love you. Flora & Fauna

Friday, September 28, 2007

hey from Julie

Hi Deni!

I am so glad to hear you have received good news, and that you have good support, and that you are moving around and staying away from alcohol!

I saw this, this week, and thought it was cute: St. Patrick

Big Hugs,

julie

Thursday, September 27, 2007

Gratefulness and the web of life

Whenever I watch the closing credits of a movie I am always struck by the vast number of people it takes to make just one movie. Reflecting on this reminds me I am not alone. So, even though I consider myself fiercely independent and self reliant and in need of very little outside help, reality tells me that I’m part of a web of life that is greater than the sum of it's parts. The number of people who have come into my own life-both the visible and the invisible-shakes up any notion I may have had about being alone or independent.

The people who are part of my medical recovery could be listed in the credits under: referring doctor, doctor of surgery, doctor of oncology, doctor of radiology, doctor or pathology, doctor of anesthesiology, assistants to all these doctors, interns and residents, the technicians who make all the various tests happen, the guys(s) who develop the films, oncology nurses, the nurse who takes the blood, the guys who test the blood, the folks that mix the drugs, the drug manufacturer who sends me free nauseau medication, the receptionists, the financial person at the center and on and on.

Then there are all my Christian, Jewish, Buddhist, Yogic, Pagan, Urban Shamanic and other caring friends and family who are praying for my recovery. My friend who did internet research for me so that I could find support. And the support groups and all the great people who I’ve come across at Cancer Care, Gilda’s Place, St. Vincent’s, Y-Me, Inner source health, Shamanic Journey’s; my friends who gave me healing tapes to listen to. And to the women who have shared their stories with me.

And there are my neighbors who are feeding me on a daily basis and doing errands for me; my friends who bring me groceries from the Park Slope Food Coop; all my friends who have gone to the doctor with me so that I don’t have to be alone; my neighbor who accepts the package from Merck for me; my family who sends me extra money and my clients who keep me employed and have offered to pay me even if I can’t work.

And of course my friend who stepped forward to become my health care advocate—I know I could not do this without her and am eternally grateful; and my partner who helps me in so many, many ways.

I haven't mentioned people by name, but know that I am thankful to each and everyone of you; I couldn’t do this alone. Thank you for being part of this journey with me.

A special thanks to my father who taught me grace in the face of adversity and to my mother who taught me tenacity, persistence and gave me a fighting spirit.

Thursday 9-27-07

Well the tests are all in for the time being. The tumors in my left breast are benign; and, as you may recall the pet scan/ct all came in clear too; and the good news remains the same for the sentinel node biopsy. Chemo was fine. The oncology staff at Maimonides is great. I feel really good tonight; now, I am not tap dancing just yet, but I'm cool. It's late but I may go for a short walk anyway--not to worry--just up the street and back, just to move the cells around a bit ;-).

Tomorrow I get the follow shot of neulasta for the white blood cells;back to the naturopath, haircut and then maybe relaxation at integral yoga.
The other day I saw a social worker who is going to be my social worker from Cancer Care. It was really helpful talking with her. she's hooking me up with a wig--which if you know me is not my style--but why not! She is going to help me negotiate the world of cancer and the whole financial aspect. And I think she's going to be a great support in many ways.

My sister sends me a link related to drinking and cancer among women (yes us poor girls just can't hold our liquor the way men can!) you be the judge: www.msnbc.msn.com/id/21009784/ Did I quit drinking for the duration of the chemo period--you betcha. Have I cut down on all those chocolate chip cookies I love so much, you betcha. Will it last--you betcha.

Monday, September 24, 2007

This Week-Discovering Assistance on the Net

This Thursday I have my second chemo therapy treatment and I see the doctor again. Last night I explored some organizations on the internet that help pay for medications for people who can't afford them and co-pay assistance programs.

There is much assistance for prescription drugs like Partnership for Prescription Assistance and some co-pay progams available. The anti nausea drug I am taking is called Emend which Merck is graciously supplying. The Patient Advocate Foundation is providing me with an award for co-pay relief which I am very grateful for.

Sorting all of this out can be overwhelming for an individual, but every hospital should have a Social Worker. I was lucky enough to find a support group at St Vincents Comprehnsive Cancer Center the day after I was diagnosed and support through Gilda's Club in New York City. Cancer Care and Y-Me  have also been extremely helpful.

My friends, family and neighbors are also helping me in so many, many ways for which I am very grateful.

Sunday, September 23, 2007

Hello Everyone!

Hi Deni! Hope you and everyone else had a good weekend.

I saw this excellent article at uncyclopedia today! Amnesty International has figured out how to focus attention on Darfur!

julie

Thursday, September 20, 2007

immune system

So glad and relieved you saw a naturopath! Keeping your mind-body(esp. your immune sys.)-soul strong during this rough spot is vital!! I have a low white cell count and kept getting sick. I take supplements to help boost my immune system and it has helped. Surely all of our virtual hugs and smiles will help you too!

Treatment

After talking with my current doctor and getting a second opinion, I decided to go with the treatment option that does chemo first, followed by possible surgery and then radiation, perhaps. This method will shrink the tumor making it more manageable and making my life a little more manageable. The goal here is to shrink the tumor so that a lumpectomy could occur. There are, of course, no guarantees, but this is the goal. The other plus of doing chemo first is that we will know which drugs actually affect the tumor. There will be eight cycles of chemo. They are done every two weeks--so this should occur over a 16 week period. There will be four cycles of the more aggressive drugs, followed by four cycles of the less invasive drugs. Today I also talked to a Naturopath. These methods should help minimize any affects of the chemo. And that is all the news that is fit to print today.

How to read this blog

If you have never participated in a blog here are a few things to note. Anyone who has been invited to join is welcome to post anything; you do this by creating a new post. You can also comment on the current posting by adding to the comments section of the post. If you want to read prior posting, note that you can go to what's been archived in the left hand column and click on a title and it will take you to that post. That is the best way of getting information. I've also included a list of books and a list of links. So enjoy.

Monday, September 17, 2007

Hey Deni,
How smart of you to do this. I so understand, telling the story over and over can just wear you out. We've been thinking about you, but haven't wanted to bother you. Linda's been keeping us up to date as much as possible. How are you managing with your treatments?
We're thinking of you and as always sending you lots of love and light.
Lots of love from all of us at the Ranch

Sunday, September 16, 2007

The journey begins

Back in about February or March of this year I noticed some changes in the quality of my right breast. Since I'd started lifting weights again in January, I thought it had something to do with that. But, that isn't really where muscle tissue is. And at any rate, Linda kept insisting I go to the doctor to get it checked out. Anyway, like so many people, it took awhile before I got around to seeing the doctor. And in New York it is always hurry up and wait anyway. So, the gyn was out of town, my own gp wasn't in the office the day I stopped by there in late May and so I saw one of his associates at the Park West Clinic down by Bartell Pritchard Circle. He recommended a doctor Maimonidies. And of course, it's summer and people were on vacation. I called the breast specialist at Maimonidies and was able to get in there in late June; she thought I needed a sonogram, but I couldn't be scheduled for one until July 20. So I had the sonogram and there were some "possible carcinoma's" in the right breast--but I thought that was doctor talk for "want to get paid by insurance company for visit". The radiologist thought I should get an MRI and a biopsy--but I was scheduled to go to Costa Rica on July 24th and decided that was what I would do. I figured if it was cancer--better I have a good summer memory and if it wasn't--nothing lost.

Since returning from Costa Rica I've had the biopsy of the right breast, and an MRI, and an MRI guided biopsy of the left breast, a pet scan/ct, a sentinel node biopsy, port placement and chemo. And I had a second opinion for how to proceed with treatment. While I do have what they call lobular invasive carcinoma of the right breast and I won't know about the left breast till Tuesday, the good news right now is that there is no cancer in my lypmh nodes or any other organs of the body. The other great news is that I have wonderful friends and family who are surrounding me with lots of support, which I am so grateful for.

Wednesday, September 12, 2007

A little it about why I created this

I created this blog so that anyone who was interested could log on to see what is going on with me and so I didn't have to repeat the same stories over and over again. I hope it is helpful and keeps folks informed. Deni