Thursday, September 23, 2010

Oncologist Appointment

“Let's take the good times as they go, and I'll meet you further on up the road...”Bruce Springsteen (Happy 61st Birthday Bruce!)

Today I had an appointment with the oncologist. I saw the physician's assistant, Desiree. I really like her and I find her to be very thorough and she always answers my questions. They drew blood, did a physical exam and then she met me if the office to discuss things.

We discussed the bone and muscle pain. I told her that I have been having this for some time and that it is particularly bad in my right hip. She said that it is unlikely for the cancer to recur while it is actively being treated but that she still wanted me to have xrays of my hip and lower back. She said I could go right down to the radiology department after my appointment and have the xrays just after my appointment.

We discussed "chemo brain" and my loss of cognition since the chemo. She said this is really common. I asked her why this occurs when the chemo does not cross the blood-brain barrier. She said she was not sure. I have this and it can be really annoying. I have trouble with word retrieval. I have trouble with names. My work partner Mike says I can have a conversation with him about a project we are working on and then have the same entire conversation with him later with no recollection of the first one. Strange for me, but certainly annoying to others.

Desiree said some people have it really bad. They get lost. Some are unable to work. I guess I am lucky because mine is not that profound. This phenomenon occurs with a lot of chemotherapy, but is particularly common with breast cancer patients. My stepmother Betty, also a breast cancer survivor who had chemo, said she had this too. She said hers lasted awhile, but now eleven years later she feels it has resolved. That is nice to know.

It has been six months since I finished the chemo but I am still getting the herceptin. My blood counts are normal. My tumor markers (blood) are normal. They have never been elevated since I started treatment. I still have neuropathy to my hands and feet. I still have facial twitching although it has gotten substantially better. I still have the chemo induced menopause. They are going to do blood work on my next visit to see if they think that is permanent. I still have extreme fatigue. I still have muscle, joint and bone pain. I still have hair!!!!!! I did lose some around the hairline. I didn't even notice it was gone until it started coming back. It is about an inch long on the edges. It is coming in white. They told me it would come in white if I lost it. I can dye it soon.

When I started all of this I thought I would bang out the chemo and move on. I figured I might be sick during the chemo but it didn't occur to me that there would be such lingering effects. Desiree said the drugs are all cleared from my system but they leave lasting damage. She said it is not unusual to have fatigue and other symptoms for 18 months after finishing the herceptin. I must admit it is somewhat disheartening.

I went down after my appointment and had my xrays. I will not find out the results for a few days.

I am of for the next three days. The weather is supposed to be nice and I am hoping to do some fun things with Julianna. Tomorrow we are going to JC Penny for pictures. I haven't had any professional pictures taken of Julianna since Easter. We might go to the beach or the playground too.

Thanks for all the support and encouragement!!!!

Tuesday, September 21, 2010

Herceptin, bone pain

I had my herceptin yesterday. I was up all night last night with bone and muscle pain. It is really bad in my right hip but I do have the pain all over. I do worry that the cancer is in my right hip. I realize that it is extremely unlikely to recur while it is actively being treated but I sometimes have trouble not going there. The fact that I have pain all over, although less intense, does give me some comfort. I think it is unlikely that I could have it everywhere. I had a bone scan a year ago and there was no cancer. I think it is impossible that it could be everywhere in a year. Breast cancer is considered to be a slow growing cancer.

I have been told by my oncology office that bone and muscle pain is not really a herceptin side effect. However, I go on the herceptin web site and breast and it seems most of the people are having the same issues. On the drug manufacturer's website it is listed as a side effect.

When I was getting my herceptin I had to get more appointments. The nurse told me I had to get herceptin until March. I kind of freaked. I told her the doctor told me it would end in December. Then she asked me when I started chemo. I advised her that it was December 7th. She asked me if I was sure. I told her I would bet she could ask anyone in the room when they started chemo and they would know the exact date for sure. A few women were nodding their heads. There are some things you know for sure and that is one. I am sure I will always remember the date my daughter was born, the date I was diagnosed with breast cancer, the date the chemo started and, for sure, the date it ended.

In the end she checked with the doctor and he said it should end in December unless there is some type of recurrence. If there is a recurrence I will need herceptin for the rest of my life. That would be the biggest bummer ever.

I have an appointment with the physician's assistant at the oncology office on Thursday. She is going to go over all my blood work, MUGA scan (they already told me it was normal) and a lot of other things.

On a positive note, my stepmother Betty is home and doing well. She is very happy to be home. Julianna is enjoying her new school. She is a little ray of sunshine, always happy and full of life. She really does keep me going.

Thanks everyone for all the positive vibes, good thoughts and prayers!!!

Wednesday, September 15, 2010

Adult Day Care......Sad, and Tired

I took my Dad to the adult day care center today. It is very close to his house, which is handy. It is a program for people with dementia. He just went for an hour today. They try to ease them into it and see if the program is a good fit.

While he was in the music program I spoke to the woman who runs the program. Her name is Ann and she is an RN with special training in dementia care. She went to nursing school at Mary Immaculate which is where my stepmother Betty went. They are about the same age and should have a lot in common.

She was discussing the progression of the disease and how we need to start planning for the future. I found it overwhelmingly sad and it just made me cry. My Dad was such a brilliant man and this disease is so heartbreaking.

My sister Alice Anne and I have been taking turns staying with my Dad. He really can't be left alone. It is not too hard to be there with just my Dad but it is extremely difficult to so it with Julianna and my Dad. He is going down stairs to look at things in the basement so I would run down there to make sure he is ok. While I was down there with him Julianna got into a bottle of nail polish and got it all over herself and other things. Its pretty hard to keep them both contained in the same area. Also, my Dad gets up a lot during the night and each time it wakes Julianna up so I don't get any sleep at all.

My neighbors have been taking care of my dog Smudge while I was over at my Dad's house. He has a torn ACL and is on herbs we got from the holistic vet. I am hoping we can treat him without surgery. The herbs have given him some diarrhea. That is not a problem when I am home because he wakes me up to let him out. But, when no one is there its a problem. When I got home with my nail polish covered child I saw that Smudge, who seems to turn in circles when he poops, did diarrhea spin art all over my rug. I cleaned all that up and went next door to get something. When I got back ( 5 min tops) I saw that Julianna was covered in poop from head to toe. It seems she found a spot I missed and was having a great time playing with it. So, into the tub with her. Nail polish remover, soap and water solved her problem but all the clothes were trashed.Uggghhh.

Betty is getting better everyday, thank God! She is in the rehabilitation center and is doing physical therapy and occupational therapy. They are teaching her the best way to get in the tub, car and up and down stairs. She is able to walk without the walker but they want her to use it so she doesn't hurt herself. I have some calls into friends to put some railings on her walk and stoop as well as the other sides of the staircases. There is also a company coming to put grab rails in their shower and a few other places. She sounds great and is very motivated. She is due to go home on Friday.

People keep telling me how tired I look. It is true, I am somewhat exhausted. I was before all of this. I am busy with work, Julianna, my Dad and Betty. I am trying to do tons of paperwork to get some services for my Dad to take some of the burden off Betty.

I am so lucky to have such great friends who have been helping me and for my sister Alice Anne who has been helping so much with my Dad. Thanks everyone!!!

Thursday, September 9, 2010

Betty Has Hip Fracture

It just goes to show's always something! If it's not one thing, it's another!" ~Gilda Radner

My stepmother Betty called me yesterday while I was at work. She said she fell on the stoop while she was getting the mail and was in terrible pain. I responded from work with my work partner Mike. I had an ambulance respond and two ambulance supervisors from my job also responded.

When we got there she was sitting up on the couch but she was in pain. She has been having a lot of pain in her lower back for the last two or three weeks and now it was worse. She was taken over to Winthrop Hospital.

In the meantime I went and got my Dad lunch at the deli and set him up with the Met game. My Dad really can't be left alone for more than an hour or so because he has dementia.

After that I zoomed over to the hospital. They had done an xray and were waiting for it to be read. Betty seemed to be in pretty good spirits and was happily watching the Met game on the ER tv. I had to go back to work but I said to call if there are any problems or when she was getting released. I zoomed back to check on my Dad real quick. All was well. I moved on, back to work.

She called. The xray was negative and they were letting her go. I zoomed back to the ER, dropped her prescription off and brought her home. All seemed well. Not. About a half an hour later Betty called. She advised me that the ER called and said her xray was questionable and she had to return for an MRI. I told her I could get back there in about an hour but she was going to try to call her sister in law. Her sister in law came and took her.

This time the ER visit took a long time. They had to do kidney function tests before they gave her the MRI contrast. They were worried because she has a history of breast cancer and received chemo and that can really damage the kidneys (that is why I got tons of steroids, Betty didn't). They waited and waited. She finally got the MRI. Then they waited for the radiologist. They said she has a hip fracture, was being admitted and will be having surgery. She seemed to be in pretty good spirits but she was worried about my Dad.

Well, my Dad can't be left alone. So I had to figure out some childcare for Julianna so I could go to their house and stay with my Dad. My friend Colleen was kind enough to let Julianna spend the night at her house so I could go stay with my Dad. I had to wake her up to bring her there but she is a pretty good sport.

I stayed at my Dads last night, gave him his pills, snack, found pjs for him and he finally went to bed. I slept on the couch. My Dad was up and dressed around 5. I got up, set up his pills, breakfast and morning news, fed the cats, did the cat boxes and took out the garbage. I had to leave there to go to work but my sister was going to come spend today and tonight with him. I will likely do Fri, Sat and Sun since she said she only wants to do one day. Uggghhh.

I am going to go over to the hospital in awhile. They said the surgery will be sometime after 1 but it could be as late as midnight. They had a surgeon to do it but they were waiting to get OR time.

Please keep Betty and my Dad in your thoughts and prayers!!!

Thursday, September 2, 2010


Today I had a MUGA (multigated aquisitional) scan. I got there at 7:30 and they injected me with stannous (tin) ions. After that I went back to the waiting room for 20 minutes so it could circulate through my body.

I then went back into the treatment room and they injected me with a radioactive substance, technetium-99m-pertechnetate. The stannous ions bind to the technetium and keep the technetium from leaking out of the red blood cells. The technetium "labels" the red blood cells.

Then they attached 3 ECG leads to my chest. After that I was told to lie on the table and it was moved into the machine. I was allowed to remain fully clothed. I had to cross my arms above my head and hold small rope holders to keep my hands in place. This wasn't so bad this time but it was torture when I had it just after my surgeries.

The machine contains a gamma camera. The gamma camera is able to detect the radiation released by the tracer (label). It can then produce computer generated movie images of the heart. It can very accurately evaluate the pumping function of the ventricles (lower chambers of the heart).

The reason for the MUGA scan is that the herceptin I get every three weeks can cause heart damage. The oncologist wants me to have the scan every three months. It has actually been six months since I have had the scan. The scan itself isn't so bad but I have to try to stay away from Julianna for a day or two because of the radiation. I can be in the house with her but she can't sit and cuddle with me or get hugs.

I won't have any results for a week or so. I am not worried about them though. Thanks everyone!!

On the table but not yet in position

View from the side

Here you can see where they did the injections

Almost all the way in

This is as deep in there as I got. It wasn't bad