Tuesday, December 28, 2010

Christmas Blessings

I would maintain that thanks are the highest form of thought,

and that gratitude is happiness doubled by wonder.
~Gilbert Keith Chesterton

We had a nice Christmas. It was mellow and relaxing. We stayed home. Alice Anne and David came and shared Christmas morning with us.

This was the first Christmas where Julianna knew what was going on. She was thrilled to learn about Santa and even happier that he felt she had been a good girl and brought her a lot of presents. I was thrilled to see how magical it all was to her.

Christmas was sad to me after my Mom died and worse after my good friend Marie passed away. It has regained a lot of its wonder through Julianna. When I was diagnosed with the breast cancer and before I had all the facts I never would have thought I would have the thrill of sharing all these times with Julianna.

My heart overflows with gratitude that I can have these great times. That I get to see Julianna add a pink hippo and a giraffe to our nativity set, knock the tree over to get a pink candy cane, take all the ornaments off the tree so she can drive them around in her jeep, have her crib filled up with everything that is her "favorite", which is everything and just laugh and laugh.

I hope everyone had an enjoyable Christmas. We had a great time but I wish we could have been with everyone we know. Tomorrow I see Dr. Kostroff (breast surgeon). I will update after. Thanks!!

Thursday, December 16, 2010

Back From Florida

"It is not because things are difficult that we do not dare; it is because we do not dare that they are difficult." ~ Seneca


We are back from Florida. We actually made it down there. My friend Lori drove us to the airport. When we got there I got wheel chairs for my Dad and Betty. I also had the three cats, Julianna and a carry on Betty insisted she had to have and couldn't check. It was logistically very difficult but having the wheel chairs helped a lot. We were able to go through security in a special line. We had to take each cat out of the carrier to have it checked. None of them got away and that was good.


When we got there I had everyone stay near the baggage claim when I got the rental car. I got it and loaded them all in. We got to their house at about 8pm. My Dad was completely confused but actually got better when we got to the house and he saw familiar things. Betty was completely wiped out since she had had surgery the day before.


Julianna and I went to Disney on Friday. She loved it and I loved seeing it through her eyes. It was a long day but it also gave my Dad and Betty the time to sleep and relax. They really needed that. On Sunday we heard that it was going to go below freezing at night. We were worried about my Dad's orange tree and decided to pick them all. I climbed all the way to the top and sent them all down. Julianna was pretty good at putting them in boxes. After we got about 5 boxes full and 6 or 7 hefty bags loaded up Betty said to stop. She said there was no way she could juice them all and they are hard to give away down there. We had to have gotten over 1000 and there are still a lot on the tree. I left the low ones so they can get them if they survive the freeze.


 We came home on Tuesday and are now back to work and school. I had plenty of activity and did great. I am hoping that continues and all the side effects go away completely.


Thanks everyone!!!!

Tuesday, December 7, 2010

No Cancer On Bone Scan!!!

“I have been sustained throughout my life by three saving graces — my family, my friends, and a faith in the power of resilience and hope. The days of our lives, for all of us, are numbered. We know that.” - Elizabeth Edwards


My bone scan shows no signs of cancer!!!! It does show arthritis in both knees and hips as well as degenerative disease to the lower spine. I had those things in last year's scan but it has progressed a lot. That is likely due to the chemo. I can live with those things. I am thrilled that there is no cancer in there and I am going to make an appointment to have surgery to get the port out now that I know I won't be needing it anytime soon.

Betty had her cardiac catherization today. She called me this morning to say they wanted her at the hospital as soon as possible. I was going to take today off just as a catch up so I was home. I took Julianna to school and went to get my Dad and Betty. I took them to St. Francis. We got there around 10:30. They took her up to the cath lab around 12:30. They did the procedure at about 2:00. By 3:00 I could go up and see her. She looked great. They did not have to put stents in and she was able to leave about 7:00. They said she can fly tomorrow. She won't be able to lift anything and has to ride in the wheel chair through the airport.

My sister Alice Anne came and got my Dad about 1:00. She took him to lunch and the Cradle of Aviation Museum. He likes that. He really didn't understand what was going on at the hospital so it was great to have him go somewhere else where he could be busy. Alice Anne said he was having a hard time with Betty not being there.

So we are going to Florida tomorrow. A motley crew. Me, super bad bone and hip pain, my Dad, suffering from dementia, Betty, recently broken hip and fresh off the cath table, Julianna, full of energy and ready to run and of course the three cats. I am worried about the scanners because of my implant and my port. I also may have some residual radioactivity and that could be an issue. We are going to get there very early in case of issues. JetBlue is assigning an assistant to us and I am sure we will need one.

I was very sorry to hear about Elizabeth Edwards passing today. She was diagnosed with stage 2 breast cancer in 2004. Obviously I don't know her personally but nevertheless I found it devastating to hear. We are all sisters in this fight.
Thanks for all the prayers and well wishes. This has been a tough week and I am so happy that it all turned out so well!!

No Results Yet, Florida Trip Postponed

So I haven't gotten any results from the bone scan yet. I guess they love the suspense, but it kills me. I called my oncologist. He called me back and said the radiologist did not call him back yet. He said that should be a good sign because they usually call him right away if there is a problem. But of course there are no guarantees there. I try to stay busy and not think about it too much but I can't help but go there sometimes. If the scan is clear I am cancer free, if not I am stage four. I am trying my best not to think about it.

I am an old man and have known a great many troubles, but most of them never happened. ~Mark Twain

Our Florida trip is on hold for now. I know everyone said it sounded like a bad sitcom to be traveling with a dementia patient, a cancer patient, a person with a broken hip, a two year old and three cats. I admit I think it is a bit crazy. It also amazes me that it costs more for the cats to fly than the people. They don't even get feline first class. Its under the seats for them. They also have to come out of the carriers in security and that has me imagining all sorts of situations.

The trip is postponed because Betty had a stress test because of an abnormal ekg. The stress test revealed a blockage that must be corrected immediately. They have not given her a date yet but it will be soon. She has to have an angioplasty and likely stents. My Dad can't be left alone so we have to make some arrangements for him. They did tell her that it should be one day surgery and she should be able to travel shortly after the procedure. I am hoping it is successful and complication free.

When I find out something, about any of these things, I will let people know what is happening.

Happy 40th Birthday to my brother Rich!!!!!

Saturday, December 4, 2010

Bone Scan

"Time is too slow for those who wait, too swift for those who fear, too long for those who grieve, too short for those who rejoice, but for those who love, time is eternity."

~ Henry Van Dyke




I had my bone scan yesterday. I got there at 10:45. They injected me with the radioactive isotope at about 11 am. I had to come back at 1:30 for the scan after I was good and radioactive.

The scan itself took about 40 minutes. I could see my skeleton coming up on the screen but it was too far away for me to really see if any areas were darker. If an area has a problem it shows up darker because it absorbs more of the radioactive isotope. I could see that my knees were darker, but that is pretty normal. The rest I couldn't see. The techs didn't really look at it and they gave me no indication of anything. I have to wait for my doctor's office to call and that will be Monday at the earliest.

They always make you wait. It is tough. I am better at it now than when I was first diagnosed. At that time waiting for the bone scan and Ct scans was excruciating. I did get a call from my oncology office about my chest x-ray. It is normal.

I couldn't go near Julianna for 6 hours after the injection. Now I can, but she can't sit on or next to me for any long periods. With radiation it is a time/distance thing. So, she can be far away for long time periods but close for less. I also have to flush twice. I am supposed to fly on Wednesday. They said it should be out of my system by then but they are giving me a special note just in case. A lot of my friends ask me if I am worried about the radiation in the new scanners they have at the airport. It just makes me laugh. I think it is like spitting in the ocean for me.

I also found out some interesting information about the doctor who was monitoring me on the overnight when I had my original surgery. Yes, that's right, the idiot who had no idea what he was doing and caused me to lose the newly reconstructed breast. Well, it turns out he is a dentist and not a doctor. Yes, a dentist. He was doing a year of surgical residency in order to be an oral surgeon. So he didn't learn anything in medical school because he never went. I am outraged by this and I am looking into it further.

Thanks everyone for all the support! We love you all!

Thursday, November 25, 2010

Happy Thanksgiving!

"Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think." ~ Christopher Robin to Pooh

Happy Thanksgiving everyone! I just got my turkey in the oven. My neighbor took Julianna to the store so I have a few minutes to write this.

I went to the oncologist, Dr. Citron, yesterday. He still says the bone/muscle pain is not from the herceptin. He thinks it is from the sudden drop in estrogen which was caused by the chemo. He is also pretty concerned about the pain in my hip. I had an x-ray awhile back and that was negative for any cancer. He wants me to have a bone scan now. He said an x-ray doesn't show bone loss until it is a very high percentage of loss. The bone scan will be able to show very small loss. I had a bone scan last summer when I was diagnosed. He wants me to go to the same place so it will be easier to compare. I will likely do that next week. It takes a few hours so I will try to find someone to watch Julianna on Friday so I don't have to miss work again.

Dr. Citron doesn't think I should have my ovaries removed. He said he thinks my estrogen will rise again on its own. He feels the chemo effects will lessen. He said since there is no family history of ovarian cancer it would be premature to do that. If it is true that the sudden drop in estrogen is causing this muscle and joint pain I am willing to wait and see what happens.

He also sent me for a chest x-ray. I asked him why and he said it is routine to do it every year and I haven't had one since last year. I got it yesterday but of course I don't have any results yet. They always make you wait. It is usually over a weekend or a holiday.

He wants me to try to get back into exercising. I feel like I ran ten miles everyday even though I haven't. It is going to be hard to get very active but I am going to try.

He also said I can get my port out. I am going to wait for my scan results to be in, just in case. I can't wait to have this thing out!! It will be so refreshing.

I have a lot to be thankful for! My family and friends, being finished with infusions for cancer, and of course my beautiful miracle baby. Thanks everyone and have a great holiday!!!!

Monday, November 15, 2010

It's been a long time comin', my dear
It's been a long time comin', but now it's here


~ Bruce Springsteen



I had my herceptin today and it was the last one! Yippie!!! It is a three week dose so it takes me to December 6th. I started the herceptin last year on December 7th so today's dose makes it a year. I am really happy that it is over. I must admit I am a little nervous too. The herceptin does offer a great deal of protection. I am now going to be swimming without a life jacket.

I also found out that I am now post menopausal. The chemo caused it. When I did my last IVF in June of 2009 my FSH was about 6. They won't do IVF on anyone with an FSH over 12. My FSH now is 123. My estradiol is 19. Chemo kills rapidly dividing cells and the ovaries are full of them. So at least I know the chemo worked in some way. The PA in my oncology office said that could all turn around but she doubts it. I am considering having my ovaries removed so I can never get ovarian cancer. I figure it might be an accident waiting to happen. I have already suffered the symptoms of immediate menopause so why keep the little time bombs? It is sad to me because I always hoped they could squeeze one more egg out and I could have another biological child even though I would not risk carrying. My Julianna sure is a miracle!

I have an appointment with the oncologist on November 24th. We will discuss what comes next and my getting the port removed. I can't wait to get that thing out. It is uncomfortable all the time. It has served its purpose, but I am ready for it to go.

So, I am thrilled to have gotten to this point. It sure has been a long road. Thanks everyone for all the love and positive energy.

Sunday, November 14, 2010

Herceptin Tomorrow

I have herceptin tomorrow. It might be my last one but I am not sure yet. I have a ton of appointments set up but I believe I should only need one or two more treatments to get to a year. I started it on December 7th last year and each dose I get is a three week dose.

I still have pretty severe muscle pain. My chemo office says it is not from the herceptin but the women I speak to through breastcancer.org who are on herceptin seem to be experiencing the same symptoms. My quads feel like I have been doing squats for hours. My knees and hips ache. I am ok with this if it is as much of a wonder drug as they say. I just don't get why they keep saying these symptoms are not from this drug.

I am told that it can take between 4 and 6 months for the drug to clear from the body. However, people who have been on it are telling me they started to feel a lot better after two months. That would be great. My doctor had discussed the possibility of me doing a clinical trial for a drug that is similar to herceptin but it is taken orally. It may be closed for stage one people but I will find out soon. I have mixed feelings about doing it. I would love to get over the side effects and move on, but I would also like the extra insurance. If it is in fact closed for stage one patients that will decide for me. I guess I will find out soon.

Julianna and I have been busy. We are working on all the normal things, toilet training, grocery shopping, playground hopping, etc. She continues to amaze me and lights up my life. Her favorite phrase is "I do myself, you no do." She recently figured out that I have a name other than Mommy. She was yelling "MaryEllen" from her crib the past few days and I have to tell her that my name is Mommy to her. It does crack me up though. She is lots of fun.

Thanks everyone for all the support!!!

Thursday, October 28, 2010

Penguin Cold Caps Good Morning America

Hair brings one's self-image into focus; it is vanity's proving ground. Hair is terribly personal, a tangle of mysterious prejudices. ~Shana Alexander

The Penguin Cold Caps made it onto Good Morning America. I have not seen it yet because I am at work. I did DVR it. I saw their story online. Here is the link:

http://abcnews.go.com/Health/OnCallPlus/cold-cap-therapy-women-chemotherapy-hair/story?id=11985624

Here is a link to the video:
http://abcnews.go.com/GMA/OnCall/video/cold-cap-save-hair-chemo-11991988

There are some things I disagree with especially where they say it is linked to increased scalp metastasis. This is not true. It has been studied and there were only 2 cases out of 7800 people in the study.

In early stage breast cancer, the incidence of the scalp as the first site of recurrence is very low. Dean et al (1983) found only 2 patients with scalp metastases in 7800 women with breast cancer treated with mastectomy, with or without post operative adjuvant therapy, an incidence of 0.025%. Clearly, primary metastases are rare.

Does scalp cooling increase the incidence of scalp recurrence in early stage breast cancer?
The most extensive literature report on scalp cooling was conducted by Tollenaar (1994) who reviewed 25 publications (1973 - 88) with a total of 1282 patients. No case of scalp metastases was reported in scalp cooled patients receiving adjuvant chemotherapy. In their own scalp cooling study of 35 adjuvant treated breast cancer patients no case of scalp metastases was found with a mean follow up of over 4 years. More recent published studies involving scalp cooled adjuvant breast cancer patients have not reported any scalp metastases (Ron 1997, Lemanger 1997).


Here is a link to breastcancer.org and their discussion on this topic:
http://community.breastcancer.org/forum/6/topic/735873?page=1

If you want to get the Penguin Cold Caps or talk with their inventor Frank Fronda here is their link:
http://www.msc-worldwide.com/

If anyone is reading this to see my cold cap experience it my first chemo was 12/7/2009. There are pictures from each chemo and the first set was posted on 12/9/2009.

If anyone is considering this I am a big fan. Its not just about the hair. It is about winning that battle and regaining control over your destiny. Breast cancer took a lot from me. I couldn't let it have everything.

To everyone newly diagnosed I wish you strength in your fight.

Monday, October 25, 2010

Pictures from Surgery

Here are some pictures from before and after my surgery. I think this one worked pretty decently and I actually have a lot more symmetry.


Just before the surgery on October 11, 2010
Waiting for surgery


About a week after the surgery.
The Good Morning America segment about the Penguin Cold Caps has been changed to Thursday October 28th. They said it should be on sometime between 8 and 8:30. I hope it actually airs.
Today is the 29th anniversary of my Mother's death. Its a long time but it certainly doesn't seem like it. RIP MOM.

Good Morning America

The Penguin Cold Caps are going to be featured on Good Morning America on Tuesday October 26th. They are finally getting some national exposure and I am thrilled about that. I can't say enough good things about them or about their inventor Frank Fronda.

People say, "what's the big deal, it is just hair." But, the reality is that is is so much more than that. To look in the mirror and not see a cancer patient looking back is huge. I think it saved my sanity as well as my hair. Going through the chemo was extremely difficult. Winning the battle with the hair gave me a big victory and it helped me remain somewhat normal.

I have to thank all my Penguin Cold Cap helpers. It was a long day each time for all of us. Thanks to Cathy, Vanna and Rosanne for coming with me and doing such a great job. And, a special thanks to my cousin Nancy for making it possible for me to use them and to everyone who donated to help me! Julianna loves to brush my hair and every time she does I am so thankful.

I had my stitches out on Thursday. Dr. Keller told me I did not do well in the recovery room. My oxygen saturation was under 80 and my respiratory rate kept dropping to 6. They had given me pain medication because I was in a great deal of pain when I was waking up and that really depressed my respiration. I also had a lot of trouble with the itching when I came out of the anesthesia and they had to give me all kinds of things to try to stop that. They also gave me a lot of medication for nausea and vomiting. He said that each surgery has been causing more anesthesia side effects. I told him I think my body is just tired. They wanted to keep me overnight. My friend Lori came with me and she told me to try to get up if I didn't want to stay. I sat up like a giant bobblehead so I could get out of there. They finally let me go. It was a tough night. But, I was able to get back to work two days later. I also walked the Making Strides Breast Cancer walk 5 days after that. I thought it was 3 miles but it turned out to be 5 and I was able to do it.

I have my herceptin today. Three weeks ago when I had it they drew blood to test my estradiol and follicle stimulating hormone (FSH) to see if my chemo induced menopause will be permanent. I will find out the results today. I am trying to decide if I should have my ovaries removed to reduce the risk of them becoming a problem and this test will help me decide. There is a link between breast and ovarian cancer. I don't want to find my self a few years down the road finding out I have that.

Julianna and I added to our family yesterday. She got an orange and white goldfish she named Nemo. We went to a street fair where they had a game to throw ping pong balls its tiny fish bowls. She threw them in and missed each one. Yippie! Then the woman said "everybody wins!" and hands her a goldfish in a bag. She then sold me a cheesy fish tank for $10. So the fish is worth about 19 cents and it cost $5 to play the game and $10 for the tiny tank. The big winners are the people running the game.

I did vow that nothing else that poops was coming into this house, but she loves it. She had to have it sit on her highchair tray while she ate dinner. Then she wanted to feed it mashed potatoes and I had to explain why that was a very bad idea. She wanted it to sleep in her crib with her, also a bad idea. I am hoping it stays alive so I don't have to bring a dead fish to the pet store looking for an exact match.

Thanks for all the love and support!!!

Thursday, October 14, 2010

Feeling Better

My surgery on Monday went well but I had some trouble with the meds. I have side effects from the anesthesia every time, severe itching and vomiting. They pre-medicated me but I still had the terrible full body itching. They gave me a lot of meds for itching, pain and nausea. The problem with that was that it was depressing my breathing and I was not waking up. They had me on oxygen but without realizing it I kept taking it off. They were considering keeping me overnight. I was able to wake up a bit and my breathing began to improve. Luckily they let me go home.

My friend Colleen picked Julianna up from day care and kept her overnight. She brought her back to daycare in the morning. Julianna is a good sport and is always happy but Colleen said she woke up a few times and was asking for me, of course that makes me sad.

I have a lot of sutures in my right breast. It is uncomfortable but no longer painful. I must say I see a lot more symmetry already. My breasts appear to be the same height. The right one does look bigger but I think it is still pretty swollen.

I went to work today and it wasn't too bad. I am going to try to walk in the Making Strides Against Breast Cancer walk on Sunday. It is only about 3 miles and is down at Jones Beach.

Thanks everyone for all the support!!!!

Monday, October 11, 2010

Home from Surgery

Kathleen here: MaryEllen is home from her surgery. It was a further reconstruction procedure, which I'm sure she'll explain when she gets a chance. She's groggy. The hospital wanted to keep her, but although St. Francis Hospital was more pleasant than LIJ, she opted to go home where she might get some rest. She'll update us when she's grounded, and also, when she has replaced her $%&! computer, which suffered a toddler trauma. Thanks for all the good wishes, Love, Kathleen (MaryEllen's younger sister in Oregon.)

Sunday, October 3, 2010

X-rays Negative

My oncology office called to say that my x-rays were negative for cancer in my hip and back. I was doing a pretty good job putting it out of my head while waiting for the results but hearing that they are negative is a huge load off.

Julianna has a 104 degree fever. She took a super long nap and I went in to check on her and she was burning up. I gave her a tylenol suppository and called her doctor. I was worried that she might have a seizure. I guess I spent too many years on an ambulance where febrile seizures are a common emergency. I know that the risk of seizure is usually higher when the temperature goes up fast and isn't always about how high it goes, but I freaked a bit regardless. The doctor said to alternate ibuprofen and tylenol and to stagger them. She goes in to see the doctor at 10 this morning.

Yesterday we took Smudge to the holistic vet out in Speonk and his knee does seem to be improving somewhat. I am really hoping we can avoid surgery for him because he is such an active dog. It would be so hard to keep him still post-operatively. He really is the best dog. He is so patient with Julianna. He lets her try to ride him, put glasses on him, cover him with blankets and read books to him. When I was so sick with the chemo and Julianna was staying with friends he wouldn't leave my side. He would just sit next to me and rest his head on me. I hope he is better soon.

Tomorrow I have pre-surgical testing at St. Francis hospital and my herceptin infusion. My surgery is scheduled for Monday October 11th.

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 cancer.org 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 ya...it'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

MUGA Scan

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






Thursday, August 26, 2010

Got yelled at, need MUGA scan

The nurse from my oncologist's office called today. She advised me that I haven't had a MUGA scan in six months. I knew that but I have been avoiding it. I hate going for it because they inject tons of radioactive stuff into me and tell me I have to stay away from Julianna for two days. I can be in the house with her but I can't hold her or snuggle with her. Plus, I figure pumping all that radioactive stuff into a person can't be good.

She said the herceptin can damage the heart and lungs so we have to do MUGA scans every three months to make sure its not doing damage. It can cause congestive heart failure. I don't have congestive heart failure. I had it when I delivered Julianna. It was pretty horrific so I am certain I would know if I had it again.

So, they made me schedule the scan. It is September 2nd at 7:30 am. They only do MUGA scans on Thursdays at 7:30. I think I will soon be like those glow night lights. If any one's kid is afraid of the dark I will be able to stop by and sit in their room. It will help you save on electricity.

I have herceptin on Monday. They gave me a two week dose last time on purpose to change my schedule. They didn't want my day to fall on Labor Day because they are closed.

I am still fighting fatigue. I joined Weight Watchers to try to lose some weight. I am hoping that some weight loss might help with my energy level. The doctor's office told me not to get too discouraged if I don't lose because a side effect of the herceptin (and the chemo) is weight gain. I am going to try anyway. I am also having some bad hip and back pain. I am hoping it is just muscular but I am going to have them check it out. I would bet they will order some type of radiological test, they like those.

Thanks everyone for all the help, love, prayers and strength!

Monday, August 16, 2010

Herceptin, First Day of School

Today was Julianna's first day at her new daycare. She calls it her school. She had a great day and loved it. I was a nervous wreck all day. I thought she would be ok but I worried that she might be scared or lonely. She had fun with the kids and the teachers. She didn't really eat any of the food. She is super picky about food and I am hoping that changes in school. I am glad she liked it because she will be going two days a week at first and in three weeks she will be going there four days a week.

I had my herceptin infusion today. I am achy and uncomfortable now. I asked about getting some drugs for an energy boost. They told me that I am tired and unable to do things because of the chemo and herceptin. They also said that the chemo induced menopause causes extreme tiredness. She said it could last a year and a half after I finish the herceptin. She also wants to test my thyroid because chemo often damages the thyroid. She doesn't want to give me any drugs because they may have side effects.

I know all these treatments may be causing the side effects. However, I don't agree with them not wanting to treat it because we may know what is causing it. I laugh about them not wanting to give drugs because of side effects. Chemo had more side effects then anyone can imagine. I am going to go to my regular doctor and see what he says about it. I am hoping he can give me something.

I am considering trying those 5 hour energy shots. Anyone have any feedback on them?

Saturday, August 14, 2010

One Year Ago....

Today marks one year since I was diagnosed with breast cancer. I must say, even though it was a tough year, it went pretty fast.

I still have a few more months of herceptin infusions to go. It makes my joints and muscles ache and it makes me pretty tired. It is a different type of tired, super fatigue and inertia. I am having surgery again on October 4th. It will be more surgery to try to get symmetry of the breasts. They are a bit better since the last surgery but still pretty far away from normal.

Julianna and I are having a nice summer. It was great to see a lot of family up at the lake. Julianna swam, roasted marshmallows and picked blueberries. She loved seeing all her cousins and cried when everyone left. I loved seeing everyone but I wish I had more energy. I am going to ask the doctor when I go on Monday if there is any drug I can take to get a boost.

Thanks everyone for all the help and support during this very difficult year. I could never have gotten through it all with out all of you!

Kaden, Chris and Rudy
Susannah and Lisa

Hanging out


Julianna swimming



Cousins





Mary Lou, Ruby, Gregory and ME

Julianna with her marshmallow





Friday, July 16, 2010

Good Story, Could Have been Bad

"I believe in angels- that they're always hovering near, whispering encouragement whenever clouds appear, protecting us from danger and showing us the way. Performing little miracles within our lives each day."
- Anonymous


I took Julianna to the beach tonight. We went after dinner. I figured we would go for an hour or so. It is nice at that time, not too crowded and we don't have to worry about the sun so much.

It was nice. She had fun in the water and playing with the sand. We go to TOBAY and play on the bay side where the water is shallow and quiet. They have a nice playground there too and we usually go to play there right before we go home.

We were leaving and I was carrying four buckets, a spinning sand toy, the blanket, towel and our fishing net. I had Julianna by the hand and we were walking out. All of a sudden she took off running. She is super fast. I was trying my best to keep up and grab her but she had a good jump on me. She was heading straight to the parking lot trying to get to the playground. Just as she was about to run into the parking lot a woman came out of no where and scooped her up. I caught up a few seconds later. The woman asked me if she was mine. I said yes and thanked her profusely.

Julianna still wanted to go to the playground but of course that was off after that escapade. I explained to her how bad that was and what could have happened.

It is nice to know that there are people out there who will grab your child and pull them out of danger. I do believe she was heaven sent.

Tuesday, July 13, 2010

Family visit

The one constant through all the years, Ray, has been baseball........ It reminds of us of all that once was good and it could be again. ~Field of Dreams



Let me root, root, root for the home team,
If they don't win it's a shame.



It was a shame. They didn't win.


I had the chance to go to the Nationals game in DC with a group of my cousins. We had a great time. There is nothing like a baseball game to take my mind off cancer and any other negative thing. A hot dog and a beer at a baseball game is better than any drug.


My cousin Johnny was visiting my Maryland cousins with his family. Julianna and I took a ride down. It was really great to see everyone. Julianna loved seeing her cousins. She was calling my Uncle Bill Pop-Pop's brother Pop. That cracked us all up. She loved my Aunt Rosie and is still saying "love MiMi".


They had a baby shower for my cousin Melissa who is expecting her baby girl soon. I am very excited for her. Good things come to those who wait, and they waited, tried and prayed a long time for this baby. I am sure she will be all they imagined and more.


I had my herceptin on Wednesday so I was a little worried that I wouldn't be feeling so great, but I was better then I thought I would be.


We had such a good time!! Thanks everyone!


Daniel, Holly, John, Johnny and Joseph Humphrey at the game

Thursday, July 8, 2010

Happy Birthday Aunt Rosie!!!!


Happy Birthday Aunt Rosie!!!!! I hope you have a great day. You are a special person, an inspiration and an example of a great Mother!!! I am so glad to have someone so kind and thoughtful in my life. Julianna and I are looking forward to seeing you tomorrow!

Herceptin.......again

Oh, my friend, it's not what they take away from you that counts - it's what you do with what you have left. ~Hubert Humphrey

I had my herceptin infusion yesterday. There were no problems with the port and I am happy about that. It seems to have started working again without any intervention. I am glad about that because I was not looking forward to a surgery to fix or replace it. Even though that was the easiest surgery I have had so far I am thrilled to skip it.

They drew my blood and ran the counts. I am happy to report that almost everything is in the normal range. Some things are just in the normal range, but they are there. I thought that they might not be because of the recent surgery. They told me I would lose a lot of blood because of it and I think that was true because I had significant bruising, but, it didn't hurt the counts.

The herceptin makes me a little achy. It feels a bit flu-like. It usually clears up in a few days. All in all I am doing everything with very little disruption. I have lost three toenails since the breast cancer walk. I think another one might be going. I put nail polish on the skin where the nails are missing so its not too obvious.

I am amazed every time I go to the chemo place. There are so many people there who are so sick they look like they are dying. I keep wondering how I ever ended up in a place like that. I don't look sick and I really feel normal. To me this just feels like one more annoying thing I have to do. Maybe I am naive, but I really try not to think about things that could happen and just stick with the here and now when it comes to this disease. The other day someone called me up and said they heard I had cancer. I said, "well, I HAD cancer. I like to believe it is gone and will never come back."

Monday, July 5, 2010

4th of July

Hello!!! We had a great 4th of July. We went to a BBQ at my friend Colleen's house and then went out on my friend Bob's boat. Julianna loved it! She keeps talking about how she got to drive Bob's big boat. She loved the fireworks too, especially the pink ones.

I have a few people worried that my cancer recurred. They thought this because I recently had another surgery. The cancer did not recur. While it is not impossible, it is extremely unlikely that it would recur while it is still actively being treated. I am still getting herceptin every three weeks and I will until December. The surgery I had was purely for reconstruction. It had to be done because the expander was causing some problems, but none of it was cancer.

I am feeling great. Thanks everyone for the concern!!!

Julianna
Julianna trying to salute

Julianna and me on Bob's big boat



Thursday, July 1, 2010

Stitches Out

Things turn out best for the people who make the best of the way things turn out. - John Wooden



I got my stitches out today. I went back to work on Wednesday. I think I really could have done it sooner but I had things lined up to do. It was good to get back to a routine. I am still a little sore but it is not that big of a deal.

This surgery was a lot easier than the others. I think it was so much worse last time because there had been so many surgeries on the area beforehand. Also, I realize now that taking any pain medication is a bad idea. All that does is fog me up so I have to sit on the couch and think about it. If I skip it and stay busy it is not too bad. I really don't mind the pain so much if I know why I have it. If they just cut me open in a spot and it hurts there its no big deal because I know what it is. If I have a weird pain in my neck or something it freaks me out because it makes me worry. Could the cancer be there? I always try to put all that out of my mind but I must admit it sneaks in sometimes.

Julianna is enjoying this nice weather. She loves the pool, water table, swings and anything else she can get to. Summer sure is a great time of year!

Wednesday, June 30, 2010

Happy Birthdays


Today is my Uncle Bill's birthday and my Mom's. Happy Birthday Uncle Bill!! Happy Birthday to my Mom up in heaven. It is a special day that brought two great people to the world.


Thursday, June 24, 2010

Moving Along

It's a blur since they told me about it
How the darkness had taken its toll
And they cut into my skin and they cut into my body
But they will never get a piece of my soul
~ Melissa Etheridge (I Run For Life)



I am feeling a lot better today. When I asked Dr. Keller when I could drive he said "You? Tomorrow, because you will anyway." I guess he really has gotten to know me. I really can't let all of this keep me down.


I called and spoke to Julianna who was at my Dad and Betty's. She kept saying "Momma, Momma". Then she was saying "go to Mommy's house." So I knew I had to go get her. She has a great time with Grandma and Pop-Pop but I know she misses me, her dog and her bed. I kept calling them and there was no answer and the machine didn't come on. There was a big storm that hit the north shore of LI really bad so I figured they had no power. I picked up a pizza and a salad in case they couldn't cook and drove up there. It took an hour to get there due to all the traffic signal lights being out. There were people directing traffic and it was really slow. When I got there, sure enough, no power.


Julianna was thrilled to see me. We visited there a little while and while we were there their power came back on. I was glad because it is over 90 degrees out and it is too hot for them. I asked them if they wanted to come to my house before the power came back on but they were reluctant to leave. I am glad they have their ac back.


Julianna was out cold before we got home and she is sound asleep in her crib right now. I am glad she is back here. I will still need help with her during the day but I am ok for her to sleep here. I can pick her up but I can't do it all day long.


Perfect sleepy girl back home in her bed

Day After Surgery

The surgery is over and I am glad. I am pretty banged up but I am feeling a lot better today. I am sorry to say I think going back to LIJ was a big mistake. I had one day surgery so I was in the Ambulatory Care Unit. The room they put me in had a wall of glass into the hallway. I guess at one point it must have been an isolation room. There were hooks for a curtain but there was no curtain. So each time they came to check my breasts or hips anyone walking by could see everything. They don't let you wear underwear when you get surgery so every time they pulled the gown off it was a complete crotch shot for anyone walking by. I now know how animals in the zoo feel.

When I told them I needed to go to the bathroom they said I couldn't get up yet. So they gave me a bedpan. No big deal normally but with no curtain it was pretty bad. They had no food, no juice and no paper towels or soap in the bathroom. I finally got to go to the real bathroom just before I left. I would not recommend going there.

My friends Colleen and Bob picked me up. They were great and I am glad because I was in a pretty bad mood by the time I got out of there. Starving, in pain and humiliated.

My breasts still look very uneven to me. I am hoping something settles down and they get more normal. I don't care so much how it looks naked, but I want them to look normal in clothes or a bathing suit. I am posting pictures. The bruising is worse today than it was last night. It doesn't feel as bad as it looks. Julianna was supposed to stay at my Dad and Betty's tonight but I may go get her. I was told I can drive when I want to.


Waiting for surgery
Waiting for surgery. They gave me this gown that they hook up to an air blower. It blows warm air in to keep you warm before and during surgery.
My right hip. He took some fat out but not enough. LOL
My left side. You can't see it so great in the picture.
The difference in my breasts. Its pretty profound so I am disappointed. I am hoping it changes as things settle down. There is more surgery to come.
I am feeling ok, just disappointed with the whole experience. They gave me tons of pain med scripts but I am not filling them. I will fill the antibiotic. I also need to take benadryl because the general anesthesia causes me to have severe itching. It happened each time I had surgery.
Thanks everyone for all the help, prayers and understanding. I have the best family and friends and feel very blessed to have you all in my life!!!!

Wednesday, June 23, 2010

Out of Surgery

This is Kathleen, MaryEllen's sister. I just spoke with Colleen, and MaryEllen is out of surgery and now at home. She is pretty miserable, but as well as can be expected. She has excellent friends. She'll update us as soon as she's recovered enough to do so. Thanks for your prayers and support!

Tuesday, June 22, 2010

More Surgery Tomorrow

I am having more surgery tomorrow. Of course I am pretty stressed out about it because it is causing me to go back to zero again. They are going to replace the tissue expander with an implant. They are also going to take some fat out of my hip and add it to the right breast to give it a more breast like shape. He told me it wouldn't be enough fat removal to make any noticeable difference. I advised Dr. Keller that I was ok with him taking out more and wasting it was fine with me. He laughed about that but I don't think he is going to do it. Bummer.

There is a big dent in the top of the right breast. That is because they used fat from my abdomen. That fat has a breast like feel but it is not shaped like a breast. It is not supposed to be. They have to do revisions to make it more normal. They would have had to do that and it is not due to error.

The left side is an expander because of the errors. The expander has to come out because it is not made to be in there long term. The other problem with it is that the fill has metal components and it is blocking my MUGA (heart) scan. They have to do the heart scans on me every three months because the herceptin I get every three weeks can be cardio toxic. They want to make sure the drug is not having toxic effects. When I had the MUGA scan with the expander in they had a great deal of difficulty because the metal fill is directly above my left ventricle. The left ventricle is the area they need to see because that is what would thicken if the herceptin is causing congestive heart failure. The expander needs to come out because that scan is essential.

As much as I would like reconstructive success I would almost leave it for now because I am so sick of surgery and treatment in general. I can't because of the scans.

I am biting the bullet and putting some pictures on here. I am doing it because I have received a lot of email from other women who have done theses procedures or are about to do it and they want an honest account of what its like. It is not so great but I wish I had some real honesty when I was getting ready to go there.
This is how it looks right now. There is about a four inch difference in height. Its hard to really see it in the picture. I have looked this way since October.


This is how it looked after the second surgery when they had to remove the transplanted tissue.
I would never put these pictures on here if I actually felt like they were breasts. I don't feel like they are. The tissue feels essentially dead. There is really no sensation because they cut the nerves when they do the mastectomies. I can feel pain to the area but the skin itself really has no sensation. They say that may change but they are not sure. It is different for everyone.
I am hoping that I will have more symmetry after surgery tomorrow. I am hoping that I will not have drains. Dr. Keller said I am not likely to need drains but he couldn't guarantee it.
Julianna is going to Grandma and Pop-Pop's house until Friday morning. After that she is going to go to the O'Brien's house and on Sunday my friend Vanna is going to take her. I am really lucky that she can go be with people she loves and is comfortable with. I am truly grateful to have so many awesome people in my life. Thanks for all the good thoughts, prayers and positive vibes!!!!

Sunday, June 20, 2010

Happy Father's Day!

Other things may change us, but we start and end with the family. ~Anthony Brandt

Happy Father's Day!!!! Julianna and I met my Dad and Betty and we had a nice dinner. Julianna is always so thrilled to see her Pop-Pop! She loves Grandma too of course but she has an extra special time with Pop-Pop.

Julianna is going to stay with my Dad and Betty when I am having surgery. They will pick her up from babysitting and keep her for two nights and one day. She has a lot of energy so I am hoping she doesn't wear them out too much. It is nice to know she will be in a place where she will be so loved and spoiled rotten to boot. It does help me to relax knowing she will be so happy.
Julianna and Pop-Pop

All of us at dinner


Saturday, June 19, 2010

Enjoying Summer

In summer, the song sings itself.
-- William Carlos Williams

I am trying to do a lot of fun things with Julianna since I might not get to for a few weeks. Yesterday we went to the beach. She had a great time. They have a new water playground there and she liked that a lot too.

When we got home Smudge was in his baby pool. Julianna decided she should strip down and jump in with him. She did and they had some fun in the pool. Smudge really is a good sport.

The Mets have been winning and the weather is great!!!

Monday, June 14, 2010

Fire, Beach, Herceptin

While we try to teach our children all about life,
Our children teach us what life is all about.
~Angela Schwindt


I had a fire at my house. It was outside and really didn't do any damage. It was a little freaky though.

My tenant called me to say there were some flower pots on fire on the side of the house. He put them out with the hose. He was home on his lunch and noticed a bunch of black smoke. I called my neighbor Bobby and asked him to check it out. He said all the pots were melted and he took them all away from the house. I called left work and called 911 for a police report. The police and fire department came. I hadn't requested the fire department. The fire department called the Fire Marshall because it looked suspicious. The Fire Marshall called the Arson Bomb Squad. The Arson Bomb squad detective said he thought it was probably spontaneous combustion. However, he wasn't sure. He said spontaneous combustion happens in peat moss. This was dry peat like potting soil and there were two plastic pots stacked together. This is a situation where this can happen, but, it was raining pretty hard. He said it is less likely to happen in the rain. He still thinks it might have been spontaneous combustion, but he said he can't rule out arson. The official report says fire, unknown method of ignition, suspicious circumstance. I wish I had surveillance cameras on my house.

Julianna and I went to the beach yesterday. It was great. She wanted to go. She kept saying "beach with Momma". I said "Momma says yes". She loves digging in the sand and putting sand and water from bucket to bucket. By the end of our stay there I felt like Jill. Jill of Jack and Jill because I fetched a pail of water over and over.

I am trying to do a lot of things with Julianna because I am going to have surgery next week. After the surgery I won't be able to lift her and I won't have her for a few days. I know I overindulge her. Most only children are a little spoiled. In her case she has my fear of the cancer coming back and my worry of not seeing her grow up. So of course I will do every little thing to make her happy at all times. "Buy this!" "Momma says yes!" I may pay for this later.

I had a herceptin infusion today. It gives me a headache, runny nose and some flu-like symptoms. They also did my blood counts. Still not great. Still pretty anemic. I now know why I didn't have much energy for the breast cancer walk. But I did finish. They were pretty surprised. I feel better every day.

Thanks everyone for all the support!!!!!

Monday, June 7, 2010

LI 2 Day Breast Cancer Walk

When the world says, "Give up,"
Hope whispers, "Try it one more time."
~Author Unknown

We completed the LI 2 day breast cancer walk. It was hard but we walked every step! We never took a ride even though they offered a lot of times.

I dropped Julianna off at Rosanne's house at about 6 am. Vanna and I then drove to Smith Point Park. We dropped our bags off at the UPS truck and proceeded to check in and have breakfast. We met my cousins Susannah and Lisa there. I also saw my friend and childhood neighbor Dona Marzigliano Brannigan. I haven't seen her in over 20 years. We talk on facebook . She has done this walk 7 times and she inspired me to do it.

The first day we did 20 miles. We got to lunch after walking about 10. I had a huge blister on my heel at that point. They had a team of podiatrists there. I had Dr. Fryman from Seaford. He fixed it up and I walked the rest of the day. It was hot and humid but there were plenty of rest stops. They had water, snacks and portajohns . The portajohn company had a sign that said "we're number one at dealing with number two". Pretty funny especially to someone whose life is somewhat consumed with potty training.

We were thrilled to get to the end. It was a very long day. At the end they had massage therapists. We took advantage of this and it was great. They also had a really nice dinner. They had hot shower trailers. They were a lot nicer than I thought they would be. It felt great to be clean.

All the tents were set up by volunteers. Our air mattresses were blown up and put inside along with our bags. They had a great band playing but most of us couldn't wait for it to stop. We were exhausted and really wanted to go to sleep. It finally stopped and I fell asleep right away. I couldn't have slept better in the Waldorf Astoria.

At 5:15 they woke us up. Ugggh . I was so sore I had trouble getting out of the tent. We got all our stuff packed up, loaded it on the truck and went to breakfast. At 7 am we started walking. At some points it felt like we were on some sort of death march, but we trudged on.

I was so sore and I had tons of blisters. I am not so sure why I got them. I had shoes that were tried and true, super good expensive socks and I powdered up at every chance. I was told it might be because my feet are still swollen from the chemotherapy. It hurt but I didn't want to stop. They offered rides to the next rest stop or to the end but it was important to me to do the whole thing.

We finally made it to the end where they had lunch. We sat down to eat and they said they were going to do the survivor walk early because they were having a severe thunderstorm warning. So we got ready for that. They had pink shirts for the survivors and my cousin Lisa and I wore those. Vanna and Susannah wore white shirts.

They had a pipe band leading the procession and the whole group walked over a long bridge. When I got almost to the end I saw my friend Rosanne with Julianna and her boys Sean, Connor and Evan. Julianna saw me and started yelling "Mommy, Mommy!!!" I took her and carried her over the bridge. She was really happy to see me but she also loved the band and walking in the crowd.

They had everyone walk in first and then all the survivors walked in last. I walked in with Julianna and my cousin Lisa. When we walked through the crowd they handed us pink carnations. It was really nice.

They had the survivors stand up when they announced the amount of years they were out of treatment. One year, five, ten, fifteen, twenty and up. It was great. It sometimes feels to me as if this treatment is going on forever so it was really nice to see so many people who had completed it. It is nice to see people who finished everything and went on to have happy, healthy lives. I will be thrilled to get there.

I was amazed at how organized this event was. I have done a lot of different group events and nothing ever went as smoothly as this. They had tons of volunteers, police in cars and on bikes, medics in ambulances and on bikes, vans to pick up anyone wanting a ride (very tempting with cute drivers), lots of food, water and toilets at every stop, cheering spots and all kinds of other things. I would recommend this event to anyone.

It did make me realize that despite finishing the chemo I am still not back to normal. I realize my counts are still bad and I am sure that increased my fatigue. I would guess my herceptin infusions didn't help either. But I did finish it!!!!

I am going to do it again next year. My whole team said they will do it again. If anyone wants to do it we would love to have you join us!!

Thanks to all my sponsors, people who encouraged me and everyone who helped. You all rock!

Team Blue butterflies on the first day. ME, my cousin Lisa, my cousin Susannah and Vanna
Me with a picture of my Mom. I carried it with me through the walk.

Dona Marzigliano Brannigan. She has done this walk 7 times. She inspired me to do it.


Vanna at the end of the first day

Team Blue butterflies on the second day.



Me walking at the end with Julianna.

Julianna, Me and Lisa in the survivor area

Izzy Marzigliano (Dona's Mom) on the memory board in the inspiration tent.


Betty Malone (Rosanne's Mom) on the memory board in the inspiration tent.


Elaine Colotti (Vanna's Mom), Virginia Piquet (my stepmother Betty's sister) and my Mom. They were all on the memory borad in the inspiration tent. They are all missed everyday.