Dancing at Ken and Adele's Wedding.

I really hope that someone has a picture of the back of my head! This was the first "updo" I have ever done professionally and it was perfect! If you need to go spa for a day or a weekend, the Cranwell is Lenox is amazing. This picture makes me happy. 

Monday Monday

The long weekend being finished, I look forward with great trepidation and anxiety to this Thursday at 12:45pm when I will start my chemo. I can't believe that I have to poison myself so badly to try and stop this disease - and with the thought of recurrence in the front of my mind, my future seems consumed with this. Kim promised me that the first chemo won't leave me too ill. "It's a cumulative thing". That would be great since Julianna is performing in the Albany Berkshire Ballet's Nutcracker on Saturday afternoon. There is all this talk about a port - everyone keeps asking me about it. I will discuss with Dr. Natarajan on Thursday but I really am not cool about getting something surgically implanted right yet. Perhaps I can try a couple of times or they can insert something without surgery. The more I read about them, the sicker I get to my stomach. I went to get my nails done today so I feel kinda done for the weekend. I will get my haircut sometime before Thursday afternoon - have to talk to my stylist. I think I would like a massage and a facial too but...the HOUSE! We have not sold this one and we are under the gun to finish the other one enough so that we can move in. Doug did an awesome job gutting the bath upstairs. But since John is "missing" again, he has no help. There is no way he can do this alone. So we are meeting with our contractor tomorrow morning to get the estimate for him to finish it. Then we will have to set up a payment plan of some kind. Damn John for bailing right after I paid him! Just spoke to Adele who is being so terrific to us. Talked to Michelle earlier and she is coming up the week of the 16th to help me out.

I am very scared of this whole thing...I can't imagine sitting there getting pumped full of poison. Even the procedure has many side effects. UGGG.

Here we go!

This morning Doug and I met with my medical oncologist. Her name is Dr. Neela Natarajan and I really like her. She pulls no punches very much like Dr. Karp. She was honest in saying that there are more hot spots than the two tumors. They are looking at me with someone with a systemic disease. I am not longer typical since this all happened so fast and that the chances are I will have a recurrence. By doing chemo first, it is more likely that when the Dr Karp operates, he will more easily find clean and clear margins. IF we did surgery now and then did the chemo, it is probably that the cancer could spread in the three to four weeks between the two and I would end up having my chest wall become involved, etc. Did you know that I am on of the 80% of women who don't have any family history? My bio-mom is quick to say it must be my bio-dad's side but who knows. We talked about genetic counseling and the pros and cons of finding out whether this is going to lead to another breast cancer or ovarian cancer - both of which are at high odds if you have the gene. then there's my girls. Do I have them tested if I am positive and just put it on their records? What about when it is time to get life insurance? Can they be discriminated against?

Also found out a little more about the side effects of the first round of AC. the younger the woman the more difficult it is to stop the nausea. So after I lose 20 pounds throwing up, then I will start getting pissed! I will start going to the dentist more often if that is true.

I have not cut my hair yet. I have a call into my stylist so that I can get in sometime when things aren't too busy before Thursday - the day I have my first treatment. Oh and about that, they will be from 4 to 5 hours long. They have to draw blood, then administer the pre-chemo drugs to combat nausea white and red blood cell recovery, etc. Can this really be happening to me? I don't see a future. I just see the hand in front of my face and if it is able to carry things and scrape wallpaper then I guess I am good. There is no doubt that my life has changed. I am not one of the typical cases of breast cancer. I am one of a few. I need to talk tot he genetics counselor. Neela said to wait a bit and deal with this because she will be doing many many MRI's and CAT Scans during the process to find out how I am going. And since there is no test for ovarian cancer, she doesn't want me to jump right into thinking that every pain is cancer. Should I have the other breast removed? We will hopefully be able to see as we progress int he chemo. Right now I am schedule for every other Thursday. I could still go down to Hilton Head with the family but we would have to return earlier than we planned. Or at least I would. I am sure the kids would love to stay until the end of vacation with their cousins. That is something to really think about. With appointments running so long, who is gong to have the time to come with me? My friends all have kids and job? Doug is supposed to be gone the entire week of December12 - 16. What do I do then? I don't think that people know what they are getting into when they tell me they are willing to help. I want to start planning for the weekends that I am in "off" mode to so really fun things with the family. YM idea of really fun is to run off to new and exciting places. Murphy and Jenny et al are going to Guatemala in February and I think I will try to go there with them. who knows.

Happy Thanksgiving

It is Thanksgiving morning and it is snowing here. A nice light snow that is not touching the street but enough to call it the first snow of the season.

I have a lo of friends and family to be thankful for. Elisabeth brought the kids out yesterday and we had an anti- Thanksgiving dinner which she cooked all of. Homemade mac and cheese, grilled veggies, ham and pie. We did not talk about anything we were Thankful for, just toasted to the next 12 months in which both of our families will be facing major challenges.

Cousin Rod has been calling me every week just to touch base and remind me that he is thinking of me. I received beautiful flowers from Brendan and Susan, Karin, and my husband. A friend Ingrid from High School spoke to Brennan and has touched base with kind thoughts.

I am thinking that this weekend will be my last of semi-normalcy for quite a while. Today we go to cousin Murph's house for the real thing. All the cousins will be there as well as Uncle Tom and Aunt Ellen and the two dogs! Murphy has been so generous in opening her home to us as well as Michelle and Venecio!

Friday my parents are coming in to do a sweeping two days of painting and moving furniture. I also meet with my medical oncologist to get my schedule for chemo. Doug has some questions about my course of treatment. I have questions like "can I get a prescription for a wig" and "where can I find yoga, massage reiki, etc for cancer patients". Some are still really pushing me for a second opinion. We did contact another cutting edge doctor at MGH but she has not returned any of Doug's calls. Susan wants me straight into Dana Farber. I jut want to get this year going so it will be over. The rest of the weekend will be working on the house and trying to get some of the rooms ready for furniture. I will need to get my hair cut short right around my first day of chemo and get a wig and some more hats!

Will update everything after my appointment on Friday.

Sunday Sunday

This weekend was full with Julianna's sleepover party on Friday night preceded by parent/teacher conferences for both girls. Saturday we were invited out to brunch and Ken and Adele's but we were unable to go. Doug is really freaking out about the new house and getting things done and sometimes feeling really sorry for himself saying he feels like "either the maid or the contractor". I feel like the big lump that doesn't have full use of her right arm because of a lot of fluid buildup where the incision is and the fact that the pneumonia shot wreaked absolute havoc (lots of pain and numbness) to the same arm. we had a showing at 2pm on Saturday - another Doug freak-out about getting things done - and an open house today. We spent the day running around while Doug was with John ripping apart the upstairs bathroom. There were no more fliers on the dining room table when I came back so hopefully we had a successful open house. We also have a renter interested from Jan - Apr. We'll see. Nothing happening this week except work on new house, getting a filling fixed and a small cavity filled, hopefully getting the damn wall-paper finally finished and down in Julianna's room, then the anti-Thanksgiving on Wednesday with Liz and the kids, Thanksgiving meal with the cousins, then meeting with my medical oncologist on Friday to set up a schedule for chemo...

Not much

I got a flu shot and a Pneumonia shot and now both arms hurt a lot. I went to my group meeting and I hated it. I really don't want to hear everyone else's stories. Some of their comments about what this drug did to them or whatever are helpful but it just made me want to throw up listening to all the stories. I will have to go back November 30 for the mind/body connection one but if they start going off about personal stuff, I am just not listening.

Flowers and insanity

These are some flowers I received from my mom last week.

Last night, Meaghanne twisted her first molar around so that it was facing in the opposite direction. she was in a lot of pain and, of course, it was right before bedtime. First, Julianna had to go next door to the Erwin's because she was so afraid of Meg's screaming and crying (and bleeding). I stood with Meg in the bathroom for a while asking her if she felt I could pull it out or if she wanted someone else to do it. After administering some Oragel, she said she also wanted to go next door and see what Mr. Erwin thought. He took one look at it and said "you better call your dentist". I called my most amazing number one dentist in the area and he said to bring her in this morning.

Everyone came home, I gave Meaghanne a does of Nyquil to sleep and then Julianna was complaining about being scared and crying for her Dada and wanting to sleep in my bed. Remember, I had not had one second to myself all day. I called Doug and he talked them down and really did not know how I was going to make it any longer. Julianna was insisting that I come to bed right away. I ended up in here on my computer and she had fallen asleep in minutes. Of course, I can't move her to her own bed because I can't carry her.

So this morning comes and I have to deliver Jules to school with her cookies for her birthday, remember to say Happy Birthday and hug her (which I did) and then wisk Meg off to the dintist. she had literally knotted her tooth. Dr. Barry had to shoot her full of novocaine and then pull it out. Of course, now she is fine and back at school and that is the only reason I am able to write this.

Time to do some work! 

It just keeps getting worse.

I talked to Dr. Karp this morning and all three nodes that they took are cancerous. They are not sticking together or giant so at least I am not into stage IV. I have my consult with my medical oncologist November 25 at 1pm. I am guessing that I will start chemo treatment the week after.

I am officially in Stage IIIA.

Stage 5-year Relative Survival Rate - IIIA = 56%

Source: American Cancer Society

A five-year survival rate refers to the average number of patients who are still alive five years after diagnosis with a specific stage of breast cancer. After seven years, the survival rate decreases for each stage. The average Stage I breast cancer survival rate is 92%. The Stage II survival rate is 71%, Stage III survival rate is 39%, and the Stage IV survival rate is 11%.
It is important to remember that these survival rates are based on averages. Some women with advanced breast cancer live significantly longer than seven years. Researchers are constantly developing new treatment alternatives to prolong breast cancer survival.

Men!

How many men does it take to roll out a runner for a wedding? This was a big last minute change in everything. A little panic later and - phew - it all worked out! 

Sunday night

Well, the big wedding weekend was a spectacular success. Ken and Adele were lovely and the two families really got along together and bonded. both families are so loving in two very different ways. I had my hair professionally styled for the first time in my life and I loved it so much! Can't wait to see pictures. Of course there are none of me on our camera! I was approached by a few of Lucy's friends who have also struggled with and beaten breast cancer. I look at them with much admiration and hope. I also look at them and see the big difference - I am 38 years old with two little kids under 10. Their loving support is going to mean much but I need to find someone who is more like me. My support group starts on Wednesday and I will be able to ask there for my person that I can call and talk to that is much like me but has made it to the other side. I am realizing what an internal person I am. I need to look inside for my strength and have almost always found it - but now, I need to learn to reach out. That is going to be the hardest thing for me and I am really not sure I am going to be able to do it. I came home to find that Dr. Karp had called on Friday afternoon. I will call him first thing in the morning. I wonder if this will be good or bad news about my nodes. Oh well, I'll know soon enough.

Silly

I love llamas.

Things

Can't sleep. Had Indian food last night finally! I have been craving it all summer and really felt that I deserved it. Saw the 30 Rock Xmas Tree delivered and felt like I wanted to take the kids to NYC for the tree lighting. Kinda feeling negative about things. I have to stop for the wedding. We need to sell this house. Since everyone in my family is in the wedding except me, I am kinda feeling left out. Just not feeling good about myself. Made an appointment with the dentist before chemo. I fear for my teeth! They are more a hang up for me than anything. I am more worried about losing them, etc than losing my breast or hair. I have always had a paranoia about my teeth, often dreaming bout them basically dissolving and falling out. I had that dream again last night. Ugh.

The surgery

I arrived at 8:30am with Doug and went right in for an IV - took a couple of tries. Then I went up and had the same woman who did my ultrasound biopsy to give me the four shots of the radioactive stuff. Right in the boob! Ouch! Then I had to wait around for two hours so that the stuff could get into the nodes. Dr. Karp came around and we spoke again about the second tumor and after a lot of really funny near misses getting a portable monitor in with a hook up to the Lahey system, I got to see the MRI and the second tumor. Woopee. Anyways, don't remember even being brought into the operating room thanks to large doses of Versed! I didn't wake up at all until like 4:30pm when Doug called my name. I guess they were trying to get me up for a while since I had been out of surgery since 1:30pm! I guess the warm blankets, extra oxygen and the sedatives made me sleep pretty hard and I didn't feel any after effects at all. Ate some soup and a grilled cheese (comfort food), got hugs and kisses and went to bed at 8:00pm with the kids!

Today I have tried to stay in bed and nap and stay on the pain med schedule but failed on all counts. I forget when I took the stuff and then the pain comes back. It is not really that bad, actually. All the stuff about a special bra was unfounded. Just a gauze pad covered with tape. I even get to take that off tomorrow night, if I want. I am absolutely astonished at the mobility I have as well. I will have no problem dancing at the wedding this weekend.

Since Doug is going to be away all of next week, I have friends helping a lot. Tuesday and Wednesday, Elisabeth and Mary are coming, Wednesday and Thursday will be Kim. We hope to get a lot more done on the house while Doug is gone. I meet with Dr. Karp next Wednesday the 16th and will get an appointment with Dr. Natarajan between now and then to discuss chemo and get me started. I now have to try and get in to my dentist as well.

So much to do. I truly feel like a floozy but I am unable to enjoy it. I hear the things going on (Doug's cell phone ringing off the hook with work issues, the kids having a fit about something) and I feel like I need to participate somehow. I just went down to see them making cookies. However, I have had some wonderful cards and gifts from many many family and friends. Julianna's card is precious.

More tomorrow -

Sentinal Node Biopsy

I will be off in a matter of minutes to have my breast shot up with something radioactive and then I have hours to wait while it courses through my veins. I am already sick to my stomach and Jules is crying and cranky. I have to go take a happy pill. Will write later on if I can lift my arm this high.

New and not so exciting

Well, Dr. Karp just called and said that the MRI shows a second tumor in the breast and so he needs to recommend a mastectomy as opposed to a lumpectomy. we are still going to do the node biopsy tomorrow and follow with chemo so that I can keep my breast for the four months of chemo. Then we will do a mastectomy, radiation, then reconstruction. This continues to get worse by the day instead of better. My husband is away in Houston so I have told three friends, one of which is allowing me to bring the kids and dinner over for tonight. That way I can release whatever foreboding I have. Hope you read this soon Kim!

 

The tests

I had to have a whole series of tests the last two weeks. Started with a MUGAScan to make sure my heart was pumping the right way and get a baseline since chemo can damage your heart - very nice. Then I had my bone scan. Had to go to nuclear medicine so that they could do the contrast, etc. At this point I am starting to feel something. Like I really do have a long road ahead of me. I have told friends, some relatives, but I am very afraid to tell my parents and my biological family. After researching the chomo protocal called AC-T I realized that I will lose all my hair - eventually everywhere. I had to stop taking birth control because of estrogen positive tests on the tumor. Things were really starting to change and I still hadn't cried. I took a moment to look at wigs and finally lost it. It really is the kids worst fear out of everything. Even more than my death, they are worried about my hair! Anyways, next test was a CT-scan and an EKG, followed by an MRI. I have the results from all but the MRI and they are all generally positive. The CT-scan showed a spot on my liver but that is not unusual. I am hoping to get the MRI results today.

The past

Here is an introduction to where I am at now. I had my yearly GYN appointment and she found a lump in my right breast. She mad an appointment for me at the breast clinic of Lahey Clinic. I had a mammogram, an ultrasound, and finally a physical exam with Dr. Karp, head of surgurical oncology. He told me right there that he was sure that it was cancer from the mammagram, the ultrasound and just from the way it felt. He did a needle biopsy right then but told me that even if it came back negative, he would have me have an ultrasound guided biopsy. I had good news for a moment as his biopsy came back negative but went straight for the other biopsy. I really have to say that I was in shock because I didn't cry, I didn't think about anything like what this would mean to me. Well, that biopsy was positive and I had the results the day before leaving on a 10 night cruise! I went with my girlfriend Elisabeth and had a fabulous time getting pampered at the spa and just being away. Upon my return, I had to go and meet my "team". Because of the timing, my husband was there only for meeting the nurse and surgeon. My nurse is where I go for all my test results and I actually have two. She put together all the infor on me and from the different doctors. Dr. Karp drew up two different options for me. One was going right into chemo and the other starting with the sentinal node biopsy. Since I need to know everything I chose the biopsy. Doug left to pick up the girls at school. I then met with my social worker who has been really helpful with things like telling the kids and getting me into a support group when I start chemo. I met my rediation oncologist who is a crazy Russian lady, I think. She really cracked me up because she was saying that Radiation is so easy, no side effects, maybe some burning, etc. "I will get you special cream to help your breast" she said. After that was meeting, I had my medical oncologist. She told me that she was very happy that I chose to do the node biopsy. She also told me what chemo drugs I will have.