Decision

I had my two oncology appointments on Wednesday. My first appointment was at Beth Israel Hospital. The doctor was nice. He suggested tamoxifen for five years and an ovarian suppressor for two years. He did not suggest chemo for me and said that I would have to look hard to find another doctor in NYC that would. He said that with the biology of my tumor, that ovarian suppression would take care of any roaming cells. He wasn't concerned that I am 39, the size of the tumor or that I had isolated tumor cells in one lymph node. We all left the appointment feeling pretty good thinking I would not need chemo.

We went to see the second oncologist at NYU. She was very nice as well. She also gave me the same treatment option as the other oncologist of tamoxifen and an ovarian suppression. She also gave me another option as well of chemo and tamoxifen. She said I am in a very grey area with my cancer and there is no absolute answer for my treatment, even with an onco score of 12. She recommended chemo with me because I am so young, I had a large 3.5cm tumor and isolated tumor cells in a lymph node. It was interesting to see the different reasoning with the same characteristics of the cancer. I also didn't have to go far to find a doctor to want to give me chemo.

We decided on the chemo option. We want to be aggressive. If I was 60, the decision would definitely be different, but I am young.

I am going to the plastic surgeon on Monday to discuss with him how much longer I need the wound vac on for, when i can get closed up and when I can start chemo. I am now 5 1/2 weeks post-op and the oncologist wants to start chemo by week 8. She said by 12 weeks, chemo wouldn't be recommended because it is too many weeks post-op and wouldn't be of any help. I am also going to have the plastic surgeon and oncologist discuss the best time for me to start the chemo.

Oncologists

Sorry that I am not going into any explanations yet,but I have to work through this decision. I saw 2 oncologists yesterday and one said chemo and another did not. I am in a very grey area as the one who suggested chemo also gave me the same as the other doctor who did not suggest it. I will post more information soon and update the blog.

Sean

So Sean finally noticed my pump tonight. He saw the bubbles going through the tube and he asked "What's that?" I told him it was just bubbles. He was fine with that explanation and continued watching the bubbles for 5 minutes until it was time for bed. He did follow the tube to my stomach and tried lifting my shirt to see where it was going, but I was able to tell him he couldn't look there and he was OK. Then right before bed he wanted to see the bubbles and I told him that they were away. He is definitely going to notice it again, hopefully I can keep the explanation as bubbles.

Today was a bad mental day. Everything just piled up on me. Rob came home early and took me out for lunch. It was nice to get out without the baby, even with the flooding and sideways rain.

Getting There

I actually had a good night's sleep last night. Sean only woke up once, so that helped. It still hurts to sleep on either of my sides, which is how I like to sleep. I can't wait until I can.

Yesterday, we went to Target and Nathan's for lunch. It was a lot of walking, but it was good to get out. The wound vac is a pain to carry and gets uncomfortable, but I just have to deal with it.

The worst part of the wound vac is the tape covering the entire wound. It hurt when the nurse had to remove it on Friday. She will have to do it 3 times a week. When she removed it, I think some skin came with it. Also my wound or the tape is itching and I can't scratch it. It is driving me up the wall. Oh well.

Appointment with the Plastic Surgeon

My appointment went well with the plastic surgeon. He decided to hook me up to the wound vac to help speed healing. He did give me a choice not to have it, but now the belly wound is covered and the visiting nurse only has to come 3 times a week instead of every day with the open wound. If I didn't get the wound vac, he still wasn't sewing me up today. He wants to keep the device on me for a few weeks and then sew me up in the operating room. It is hurting my stomach a little bit, but the doctor said it should stop hurting by tomorrow.

How long he keeps me hooked up depends on what happens at the oncologist appointments next week. He will tailor my treatment depending on what and when the oncologist wants to do. If I do need chemo, they won't do it with an open belly wound. So if either oncologist wants to start soon, I won't have to wait and he will sew me up sooner if needed.

Again he was happy with how my new breast is healing. He is taking off most of my restrictions. He advised that my belly will tell me when I am doing something I shouldn't. I am glad I can start driving again.

The wound vac is an interesting device. A piece of foam is placed into the incision/wound, a large piece of tape covers that with the tubing coming out of the tape. It is hooked up to the machine which is the size of a hardcover book and weighs a few pounds. I can clamp it off myself so I can shower. It does make some noise, not too loud though, but it sounds like it is farting. I can hear Sean saying "Mommy you farted". At least it won't scare him, but make him laugh.

Now we wait until Wednesday for the oncology appointments.

Good News

I just heard from the surgeon and my oncotype dx test is back and my score is 12 out of 100, which means that I might not need chemotherapy. We will know more after speaking with the oncologist next week.

Oncotype DX information

Appointments and Such

I am still waiting for an appointment time for tomorrow's appointment for the plastic surgeon. Tomorrow is not his regular appointment day and he is going to fit me in between surgeries. Rob is taking the day off to take me in. I am hoping he will stitch me up, but there is still a chance that I would be hooked up to the wound vac.

I am feeling OK today. Just tired as usual. At least the pain in my side is getting better and I can also lift my left arm over my head. My breast is healing nicely and is taking shape. You can't even see a difference though clothing.

I changed my oncology appointment to next week because of the plastic surgeon. I am still trying to get an appointment with another oncologist at Beth Israel. They have to call me back. I might do a third opinion with Sloan Kettering in Plainview, but I am going to wait until I get the appointment at Beth Israel.

Getting Out

I finally got out of the house for something other than a doctor's appointment. Yesterday we walked over to the park. It was 2 blocks away & I was exhausted when we got back, but it was nice to see Sean playing in the park with his friend. We also went next door in the evening to our neighbor's house for dinner. It was a nice, but tiring day.

Today, we went to Barnes & Noble. That was enough for me. Now we are relaxing at home together.

All Cleaned Up

After waiting 2 1/2 hours for my appointment, I finally got to see the doctor. He was very optimistic about the mess on my belly & said is a common complication that can be easily fixed with no issue. He then kicked my mom & Rob out of the room. (They wanted to see this part.) He & the nurse cleaned up the belly & cut away all the bad & dead tissue. He then cauterized the gash which the nurse told me now looks like a large hole. She told me to try to not to look at it. The doctor said that the wound won't smell now, which I was glad to hear. The smell of dead skin on your own body is pretty gross. The doctor advised me that when he does stitch me up, my stomach is going to be even flatter since he had to cut so much tissue out. I have to go back to see the doctor on Thursday to either be sewn up or given a wound vac. Since I don't know the time yet, I am going to change my oncology appointment. One good thing about the surgery is my new breast looks beautiful & the doctor was very happy with the results. I am happy too.

After the appointment, I was feeling pretty good. The wound itself didn't smell & felt a little better. It was a long day though. Today, I am feeling a little anxious about the wound & showering. I don't know if I am going to be able to do it. Rob & Sean left to do errands & nurse will be here before they get back. So I don't know if I want to try and do it myself today.

The doctor did tell me I was allowed out in public places, so Rob said if I was up for it, we would go out for dinner & get me out of the house. Getting out of the house would be nice.

Waiting

So tomorrow is the big day. I finally get to see the plastic surgeon. Hopefully he will be able to give me some reassuring news. Mom & Dad are taking me into the city & Rob will meet us there, since he is back at work. My appointment is for 11:45. I hope he won't be too backed up.

I had a new visiting nurse today, since my regular one is on vacation for a week. She took one look at my belly and said, "That's bad." Really? I didn't know that. She was nice though. She explained this device called a wound vac. She said the Dr would probably clean up and remove all the dead, black tissue and then sew me up with the wound vac in. It is a vacuum that is inserted into the wound to suck out anything bad in it. She said it helps the wound heal very quickly. I hope the doctor does something. I can't wait for this gaping hole to heal on it's own.

Oncologist

I made an appointment with an oncologist at NYU Cancer Center for next Thursday. I have to wait for the oncatype DX results, so that appointment might be changed. I tried to make another one at Beth Israel, but they don't take my insurance right now. They are under negotiations for the new year. My friend is looking into seeing if the doctor will see me anyway. I am also looking into another doctor on the island.

The nurse said my belly is starting to look good. Slow, but it is healing. I can't wait for my appointment on Friday.

On My Own

Today I am by myself for the morning. Tomorrow Rob is going back to work. Rob had me shower yesterday by myself. It was OK until I had to touch my gaping hole in my belly to find the gauze the nurse had packed in there. I did get it all, but it freaked me out. I haven't looked at it yet, but touching it has reaffirmed that I shouldn't.

I woke up this morning with pain on my heel. I realized that my heels were so dry that it split open. I guess not moisturizing and walking much has killed my feet. :( I will have to bandage it good so it won't get infected.

So looking forward to my Dr appointment on Friday.

Stuck in the House

I wish I could go out. I wish my belly would heal. At least it is less than a week until my appointment. It would nice to have more visitors.

The exercises are really difficult, but I know if I don't do them I will lose mobility in my left arm. So I do them. Rob keeps trying to encourage me and tells me that if I don't do them I won't get my yummy dinner. Push through the pain.

Visiting Nurse

The visiting nurse is now coming every day. She checked the wound in my belly and found it worse since last time she saw it. She made a new report for the belly and released the checking of the breast. The belly wound has gotten wider and deeper. It is 3cm deep in one area on the right. This might be why I might have the pain on the right side. The nurse is going to come every day now until I see my plastic surgeon on the 15th. I am not allowed in any public places until the open wound is closed. Since it is so cold out, I am limited to the apartment. At least I am not in the hospital.

Yesterday was nice though. My mom's friend, Ruth, got us a cleaning lady. It nice to have a nice clean house.

Good Day

I had the appointment with the surgeon today. She is very happy with the look of the breast and even gave me exercises to start today to get my arm mobility back. She checked my belly and the redness was lower than the line was yesterday. She said I was OK enough not to need the IV antibiotics. The visiting nurse is suppose to start coming everyday, so she should be able to keep an eye on it. The doctor also suggested that the plastic surgeon clean up the belly and close it up. We will be discussing that with him next week. I really don't want to have this open wound for weeks, since I am not allowed in public places while I have it. It limits where I am allowed to go.

Other than that, we are hanging in there. We thank everyone for their thoughts and well wishes. Rob is going back to work next week and I will be good next week to be by myself.

My next appointment is for the plastic surgeon next Friday.

Problems Healing

I had my appointment with the plastic surgeon today. Since my surgeon is still on vacation, I saw one of his associates. She was very nice. She said the breast is healing beautifully, which we already knew. She examined my belly and was not happy with how it is healing. I have a 4-6 inch opening in my belly that is about 1/2 inch deep. She changed the dressing type and gave me stronger antibiotics. She also drew a line on my belly where it is red and if the new antibiotics do not shrink it or if it goes above the line tomorrow, I have to go back into the hospital for a few days of IV antibiotics. If everything looks OK at tomorrow's appointment, then I will see my plastic surgeon on the 15th and discuss whether to leave it heal or go in for out patient surgery to clean the opening and close it up.

We will know more tomorrow.

Restful Weekend

It was Rob's birthday today. I wasn't able to do anything more than sing him happy birthday. Sean has been saying it to him all day and saying Daddy wanted present. Rob took him to the mall to get them both out of the house.

I am hanging in there. I get to leave the house tomorrow for my appointment with the plastic surgeon. Hopefully, he will think the open wound on my belly is doing OK. Good thing is that it doesn't hurt. I really have no feeling there at all. We will see what he says.

Pathology Report

Happy New Year! My surgeon called last night with my pathology report. It was good news. My tumor was 3.5 cm and the ones that had only shown up on the MRI were actually extensions of the larger tumor. It was good that I had the mastecomy. I am listed as Stage IIA. All the nodes that were removed were listed as N0 - which is considered negative, but one lymphnode did have isolated tumor cells. Dr said that was still ok. I have to do some research into it.

Our next step is choosing an oncologist to discuss treatment options. Dr Axelrod said she would fit me in on Monday before her surgery and then I can see Dr Levine, the plastic surgeon, since that appt was changed to Monday, both follow up appts.