It was a nice surprise!

Today, I spent all day at the hospital preparing for Monday surgery, YES I am going back to the operating room and this time to take out both ovaries and the uterus.

WHY?:
because if I do not do it I have got a large risk of cancer coming back
because Tamoxifen is not the drug for me and is doing more harm than good
because I need to be in menopause in order to replace Tamoxifen for another drug
because I need to be in medical menopause so I can get rid of my large level of estrogen
and because I do not need my ovaries or my Uterus but I do need to see my son growing.

Yesterday and today have been hard days getting used to the idea that a large surgery has to be done. But I received the great surprise from Fiona in the UK and Chris that the video of the 60 miles walk (100 Km) from September for Susan G Komen to raise funds for Breast cancer from our group was ready.

This walk was and will be one of the best experience of my life, these are the friends who have been unconditionally on my side and I know will be with me all the way through. Amazing ladies and amazing people with huge hearts and a great sense of humor. Receiving this video so cheer me up today it was a nice surprise for a bad day, it reminded me that we will be together through this and I do feel sooooooo much better!

Enjoy this video, It is great!!!

http://www.youtube.com/watch?v=MVoamPDlOk4

When you think you have finished!

October 29th was my last Herceptin, I thought that day was never going to arrive as I had been on it for a year but it did and I was the happier person on earth. I thought my life was going to be kind of back to normal with minimal doctor's visit but was I wrong!!. Since October 29th I think I have been on a doctors office almost every day, want to give the details as my case seems to be a rare one and might help other people.

First my hip had still being bothering me since the long walk, and I have been trying running for the past month with some discomfort. Dr Chen asked me how it was and when I told her it was still bothering me she told me that she wanted to do a full body nuclear bone scan, which I did last week and the results were ok. That was a relief but I was soooooo stress about this test and the results!.

The day after Herceptin Dr Chen called me and she said that the final blood work had arrived and my estrogen levels were really high and she wanted to repeat the blood test, first to check if I was pregnant and second to make sure the lab had not mistaken them. It could have been comical being pregnant now when I could not afford to be at all!. Went back on Wednesday and she called me on Thursday saying that I was not pregnant (we knew that....) and that levels were the same and she was really concerned, she wanted me to see an Endocrinologist the following day and she had already spoken to him and he was waiting for my call. I went to see him on Friday morning and he said that the norm is that when you are on Tamoxifen the estrogen are normally not measure as they are normally high, however they had never seen the levels of estrogen that I have (he had checked with several other endocrinologist). When you have your period the levels of estrogen are normally around 50, when you ovulate around 300 and if you are pregnant they might go a bit higher. Well mine are at 1,400 and they cannot say if that high levels are from Tamoxifen or for another reason.

Now to know what other reason could affect estrogen levels you need to have more test. First a full hormonal blood test which come up ok except the estrogen. Then I had a full ultrasound of ovaries, kidneys, liver, glands....and they saw I have got a large cyst of 5 cm on my left ovary and another large follicle or cyst on my right ovary. They are cysts and not mass or tumor so they are 100% ok is not cancer and it is quiet likely that the high levels of estrogen are producing them so now I have to see my Ob/Gyn this week to see if they will take out that cyst or they will just monitor it.

Then after the ultrasound I had several conversations with Dr Chen about how to approach this. Both her and the Endocrinologist had spoken to several other doctors, had even consulted with Stanford and NONE has got any medical records of what will happen to a women's body with that levels of estrogen. They can see there is nothing wrong with me that will make that levels of estrogen and they need to found out why they are that high. She is very confident that even at high levels Tamoxifen is protecting me, however they are concerned any other harm that it could make to my body. SO I have stop taking tamoxifen yesterday for 4 weeks, after that they will test me again and see if the levels of estrogen are high or not, that way they want to see if it is Tamoxifen that is reacting on my body or if it is my body just generating that level of estrogen. After that test we will have to make some decisions but Dr Chen has already told that I might have to consider to take my ovaries out, I guess we will cross that line when it comes..

So mentally I am a bit of stress as for the past 18 months I have been talking some type of drug to prevent my cancer of coming back. Now I am taking NOTHING and the thought of it makes me very nervous!!. If anyone has had any issues with estrogen levels, similar to me please E-mail me...

San Francisco 3 day walk

WE DID IT!!!!,

We walked 60 miles (100 km) over 3 days, we laughed like we have never laughed before, we cried of emotion, we cried of exhaustion and we all had the time of our lives. My friend Fiona come all the way from the UK to do the walk with us and she was in town ready to have the walk of her life in flip-flops!.

We met at Corte Madera hotel on Thursday evening, many of us (I include myself here) did not sleep at all, too much excitement and too many things on your head: will I make it?, where are we going?, is it going to be too much for me?. We were all up at 4:15 am and ready at the lobby of the hotel at 5 am, took the bus and at 6 am we were ready at the main camp for opening ceremony. The opening was emotional but encourage, people who have lost the battle were specially remember and people who have gone through diagnosed and treatment as well. We started the walk at around 7 am, we went through Corte Madera, Tiburon, Sausalito and stop at the bottom of Golden gate for lunch. We cross the Golden Gate after lunch and then walk down to the marina, Crissy field and Fisherman wharf. It was a total of 19 miles and we made it back at around 3:30 pm, we stop a few times at different pit stops and we took time for lunch...the idea was to take it easy. We took the ferry to Treasure island where we had to walk another 1.5 miles to camp, we picked up our bags and tent and under cold, windy weather we started setting up our tents for the night. At that point I was a bit worried that it was going to be a long night!!. We ate like if we had never eaten before, we visit all the tents at camp and we were in bed at 8:30 pm!. I think I was sleeping by 9 pm and slept on and off all night, I was so exhausted of not sleeping the night before!.

Second day, we took the bus to Berkeley where we walked another 20 miles around the city. The walk was tough as it had lots of hills and it was all around the city so it was not as impressive as the Friday walk views. We took almost 2 hours for lunch as some people needed assistant with muscle pain, we ate a sandwich and the ones who had blisters took care of it with the medical staff. We made it back to camp by bus at around 5:30 pm, we were emotional, exhausted and we just wanted to lay down and sleep. We had dinner and we decided to make it to Hotel without spending any more minute at camp. The idea was always to have one night at camp in tent and one night at hotel. We arrived at the Hilton at 8 pm, only two rooms were ready so in return they delivered three bottles of wine, cheese and fruit to one of the rooms. We had a great time after a quick shower, we laughed while having a well deserved glass of wine. We were in bed by 10 pm

We slept like angels on Saturday night and we were ready at 7 am at the hotel lobby to walk our last day of the 60 miles. We arrived at the start point at 7:30 am and started the walk, we cross Crissy fields, up one side of the Golden Gate to go all the way to Lands End, one of the most beautiful walks I have ever done in my life. We then had lunch at the other side of lands end and crossed Golden Gate park all the way to San Francisco. Part of the walk was like a hike, it was hard but we had such a great spirit that we all did it really well. It was really emotional to arrive to the end!!.

Things that I can highlight from the weekend, first of all it was to spend quality time with the girls, it was a time that we will remember for a long time!. along the walk you see things that do make you very emotional: a woman who had just finished treatment was walking with her daughter, an 80 year old couple were holding a big sign at the side of the road waiting to cheer their daughters that said : " thank you for walking, 42 years survivor". To see our families cheering us up each day, to see our Spanish group making a big banner for us and waited to cheer us up on Sunday morning, it was really emotional.

Then you have the closing ceremony, where people are exhausted and emotional but every single person has got a huge smile on their face. People who have lost the battle were remembered, I did cry for my grandma who did not have the opportunity like me to fight breast cancer. People who are going through treatment were remembered and I thought about all my oncuchangas who are currently going through treatment like Mila and Rebe and they are almost at the end of it. I cried and danced at the same time, I was honored to be there with such an amazing group of friends supporting me through the way.

This year walk had 950 walkers, 400 less than last year, as the bad press of Susan G Komen this year really affected it. But the event still collected $2.4M net!!. I am not very keen on some of the things that Susan G Komen does but I also have to admit that they are one of the associations that can make a difference on the fight against breast cancer and I will always support them for that.

I wish......

I do not wish any bad things to people but I am starting to have real hate feelings to the person or people who stole my identity last September.

Last week I found out that AT&T did open an account to that person last year and the account has a balance of $800 that has not been paid. Of course AT&T is after me now but my question is.....why AT&T opened an account to someone else in Miami in the first place and they never notify me?.  Why after having a home AT&T account for almost 7 years and paid always on time, AT&T never checked with me why the other account was never paid?. I am so furious....

Today I decided that it is time to have a professional involve in the case and have decided to engage a lawyer to help me, I am now too scared and worried that there are others things out there that are still going to come my way.

Update on Lymphedema

Want to put some update about it as I know some of you who read me are concerned about this as well. I was called in July from the hospital for physical therapy of the arm but I cancelled it as I considered that my arm was back to normal after doing some exercises. However the therapist called me back from the hospital saying she still wanted to see me as once you have had lymphedema, even if you control it, the probabilities of coming back are large.

When I saw her first she measure my arms and told me both were the same size so no swelling, she also notice some congestion on my elbow and that is the area that was really painful when I come back form Spain, I was impressed she pointed out without me saying it. So I have gone twice to the hospital and I am there only 30 minutes for an arm massage that puts me to sleep! I hate massage as they hurt (at least on me) but this is so gentle that is really relaxing. I will be doing 6 treatments only, twice a week.

She gave me some instructions of what to do about this so I am writing them here as some of them are common sense and some are a bit over the top in my opinion:

• Avoid wearing jewelry on the affected limb - I am not taking my wedding rings off....
• Avoid wearing tight clothing, specially with elastic bands at the end of sleeves
• Always wear a thimble when sewing - do not do sewing...
• Discuss sporting activities with your physician
• Avoid intense activities when possible, if unavoidable, spread intense activities over several days (house cleaning) -  taking this one on....no more house cleaning!
• Always wear gloves when gardening, avoiding prickly/thorny plants. do not do gardening.
• Avoid contacts with pets, especially their claws - Never, my dogs are my family
• Avoid activities that have a high risk of causing cuts or scratches
• Always use an over glove or pot holder when handling food on the stove top
• Avoid exposure of the affected limb to the sun. Always apply sun block to the limb, even if covered by clothing.
• Never use a hot tub or Sauna - Really?
• Inform health care to never perform injections or blood pressure on the affected limb. Must wear my medical alert bracelet!!
• Always wear your compression garment when traveling by airplane even if you do not have swelling. I failed on this one that is why I am here now
• Keep the skin clean and moisturize
• Use bug repellants to avoid insect bites - I got a bite the other day and I got a large lump on my arm that took a few days to go down.
• Do not cut the cuticles of your nails when having a manicure
• Seek medical attention if you have fever or the area becomes: red, swollen, warm or painful

Results

I think I am getting better with coping with test and waiting for results but it is still super stressful to have that type of tests and even more stressful to wait for the results. I just hope that I will get better with time, just hope........

As you might remember I had a CT scan done in November of my liver as follow up of the MRI I had in July last year. The MRI had showed two cysts in my liver but the PET scan had rule out they were cancer. In November they confirmed that both cysts were categorised as Hemangiomas, meaning no cancer but they suggested a follow up 6 months later to make sure that was the case. So on my last Herceptin treatment Dr Chen said she wanted to do another CT scan of the liver and the regular MUGA scan of my heart to make sure my heart is not affected by Herceptin.

The hospital called me two days later to set up the appointment, I was doubting to do both scans at the same time or split them in two days but she was really good on setting them up one after another and she kind of convinced me to go ahead and just do both the same day. The problem was when she said I had to go to the hospital earlier than the scan to pick up the bottles to drink before the scan, I was horrified, my last CT scan was just contract through an IV and not drinking but this one was drinking and IV so I freak out. I asked why I was having a different scan than last time and she said I had to speak to my doctor but she had requested a full abdomen and pelvis scan, of course my mind started wondering why she is requesting a bigger scan if there is no reason to do it....When I finished talking to the hospital I called my doctor office as a paranoid woman that I am in this cases to ask why they were doing a much bigger scan, they just said that they thought that was what they had done last time so they kind of told me to calm down and get along with it.

I did both scans last Friday, for the CT scan you have to drink lots of horrible who knows what....first bottle has to be taken 4 hours before, another one 1 hour before and the last one while I was there. They put an IV where injected the dye that makes you so hot that the hot flashes from Tamoxifen are nothing compare to it. The CT scan is finished really fast, you are in and out in 5 minutes.

After the CT scan I had the MUGA scan that takes about an hour as they take blood out, they mix it with some radioactive thing they let it stay for half an hour, they inject it back to you and they put you in the scan. The scan last around 25 min and it is a bit of a pain as they connect you to all this sensors to your heart and the only thing you can hear around you are beeps. Also the screen on the top comes really close to you and it is much more claustrophobic than the CT scan. The technician told me that the results were really similar to last scan so meaning they were good.

I have to say that I love my Dr as she calls me as soon as she sees the result which is normally 24 to 48 hours later. She did called me on Tuesday and told me that the scan was all clear in all the areas, that I still have got the same cysts in the liver that have not changed and that they are categorizing it as non cancer. She told me that she will not do another CT scan on me but probably do annual ultrasound of my liver. She had not received the results from the MUGA but told her that I was ok to wait until Monday on my Herceptin treatment to get it as the technician had already told me it was fine.

I had my year check up with the breast surgeon today and everything was great!, another milestone to celebrate, have got only 6 sessions of Herceptin to go, a surgery and that is it!!. I still see every doctor every 3 months but I prefer to do that than non seeing them at all, call it peace of mind that everything is ok.

Lymphedema

What is Lymphedema?, if you google it several web sites will tell you the following: Lymphedema is a swelling due to blockage of the lymph vessels that drain fluid from tissues throughout the body and allow immune cells to travel where they are needed.

When you have had some of your lymph nodes removed under your arm pit during your breast cancer treatment then you have the risk of developing lymphedema on your arm. For the rest of your life your arm will not be able to take any pressure, dramatic change of temperatures.... For example I can not have the blood pressure measure on my left arm, or I can not have blood taken from the left arm. At the beginning I did worry about it a bit but lately I complete forgot about my arm and the possibility that lymphedema could affect it until I come back from Spain.

When I come back from Spain my lower arm starting hurting a lot, I was not sure if it was bone or muscle pain but my elbow and lower arm specially in the evening I could not even touch it. Of course your mind goes wild and you think something related to cancer is happening to you....So last week I saw my Oncologist before Hercepting treatment and she looked at my arms and pointed out that the left was swollen and it was probably due to Lymphedema. She was really upset with herself as she said she should have prescribed me a lymphedema sleeve to travel on a long hall flight to avoid any swelling but she did forget. She sent me to a clinic to be measure and get a lymhedema sleeve that I have to wear at least to sleep and more if I can and then she sent me to do physical therapy to learn what exercises to do and how to massage the area to help manual drainage of the fluid.

I pick up the sleeve yesterday and I am waiting for the Hospital to call me for physical therapy which they told me will be next week probably. I will give you more details of what they tell me on therapy in the coming weeks.

One year later

Today is one year since I first visited my OB for checkup of the lump in my breast, and today one year later I am here sitting at the chemo room at the Oncologist clinic for my every 3 week Herceptin treatment. Oh my God, so much has happened in one year!.

This weekend was the Relay for Life in Sunnyvale organized by the American Cancer Society and Olvido our captain did a fantastic job and despite that it was a small event we all had a great time!. Over the weekend and during the San Juan fiesta at Neus's house we remembered how last year at the same party I was really worried about my Monday visit to the doctor. I do not think any of us, included myself thought that visit was going to change me so much!.

What has happened to me during the last 12 months?, I have got a long list of activities that have kept me really busy: I have had a mayor surgery to remove my breasts, a small surgery for the chemo port, 2 MRI, 5 Muga scans, 1 PET scan, 1 CT scan, 1 biopsy, 4 AC chemo treatments, 4 Taxol chemo treatments, 28 sessions of radiation, 12 Herceptin treatments and an amazing total of over 50 doctor's appointments. I have got my last surgery set up for some time in December to do final breast reconstruction and hopefully take my chemo port out as well. And I have got no doubts that the list will grow on the coming years as I am watched very careful to make sure no sign of disease is anywhere near my body.

However that long list was much easier to do than expected because I have a huge support system that was with me all the way through:

• My dear husband who has been next to me all the way through. He is the one who has seen me on the real bad days, days that I could not move from bed or days that I could not sleep because I was waiting for a test results. He has never complained and he has never made an excuse, he just held my hand through the process and I love him so much for being the nicest person ever. One of my oncologist nurses Mary is in love with him and she reminds me every time I go to the chemo room that she has never seen any husband being so supportive and always being there with me.
• My beautiful son for being so dawn cute and for making me laugh every time I did not have the strenght to do it. Everytime I was down I just needed to look at him and I could just carry on.
• My parents being able to spend as much as they did with us in the US, it made things so much easier!
• My spanish family and friends who were all so far away but so close at the same time. I know how hard it was for my sister not being able to be with me during the process. I also realized during my last visit to Spain how much my cancer has affected some of my closest friends in Spain.
• My Spanish friends in the US who have unconditionally being there for me and as Gema said my situation has made us being even much closer than before. The amount of lunches, dinners, parties and any other event that they did organize for me it was amazing!.
• Fiona and Lorraine, My english and Irish support who have been the only ones that managed to get Alberto to agree to let them come to the Hospital or to the chemo room with me. I am so thankful for everything they did for me!. Fiona managed to fly from the UK almost every month to see me, she has always being next to me on all the important events in my life: wedding, when Ethan was born and this. Lorraine in my mind was like my sister, she check on me every day, she cook for me almost every weekend and she told me off when I did not want to do something...
• Joan and her amazing treatment days that make me relax and help me recover so much faster.
• Cheryl, Ainara and Eva who had been diagnosed with breast cancer before me and help me soooo much answering all my questions and help me as I went through the process. I called Cheryl the day I was told I had breast cancer and she told me: " you are much stronger than what you think, you can do it and you will come up much stronger and being much better person", this sentence has been in my head for 12 months.
• Saint Chris moms group who gave me so many amazing and thoughtful presents and that have always being checking on me to make sure I was ok.
• Many other friends who have been so supportive and helpful and have prayed so much for me!.
• And of course my amazing group of doctors who made the process so much easier!.

During the past year I was fortunate to live close the life of people who were fighting for their lives or their childrens lifes and I got moved by the strenght that some people do have, I have always said that these people deserved all the respect of the world as they are the best of the best you can find.
I was really lucky to be able to share my story and process with people who were new diagnosed and help answer all the questions they had, it was nice to be able to help people through that horrible process.
I was also really happy to watch the creation of a group in Spain called "pelones peleones" and amazing group who helps so many people affected my cancer every day. This group is determinated to change some of the Spanish rules about some medical processes and they are making real big noises, it is a pleasure to see their progress!.
My "Oncochungas" is a group of cancer patiences in Spain, mainly breast cancer, we have got really close through Internet and we support each other on any question about the treatment or just support each other when one of us is having a bad day.
I was also really lucky to meet the group Latinas Contra Cancer and was amazed about the work they do to support all that people who have been diagnosed with cancer but they are not that afotunate to have a good supporting group around them. I am looking forward to work with them in the coming years and to hopefully being able to get more people to support them.
I was able to reconnect with family that I have not spoken in years. It was amazing to also connect with University friends who have been following my case very closely.

Last year was difficult but I have learned so much about me and the people who is around me. I am just happy to be here and given the chance to fight for my life, as some of my oncuchangas will say some people are not given that opportunity and I am just grateful to have it.

Breathing

I wanted to share this with all of you as it could be very beneficial for some, specially the ones that have got high levels of anxiety and if you are like me since I finish the main cancer treatment that levels have been higher than I would like.

Around 8 or 9 years ago I had real issues while I was in the UK with dizziness, my friend Fiona will remember that after having lunch with me one day at work I almost passed out at the office and an ambulance had to take me to ER. The dizziness got worse and I thought there was something really wrong with me, I think I visited every doctor I could imagine in London and what I found out was that I was really healthy and the dizziness was just stress related and tension on the neck what was producing what they called neck vertigo. Well, eventually they went away with massage, yoga and some exercise but I was not sure if I was happy with the logic of why they did come.

Years passed by and after having several miscarriages they started coming again from time to time to the point that it make me go and see a doctor to talk about it. I found this wonderful doctor in San Jose who as soon as I told her what was happening she said....:"girl, your problem is that you do not breath properly", I thought she was joking but she gave me a really good medical explanation why I was dizzy. She make me lay down, gave me two books and ask me to set one in my stomach and the other in my chest and she said: " OK breath normally and lets see which one moves", it was clear that I breath with my chest. Chest breathing is associated with short,fast breathing that eventually and after some time auto ventilate you and that makes the mix in your body between oxygen and carbon dioxide to unbalance and come produce things like dizziness because there is no enough oxygen going to your head. When you are stress and you are used to breath short and fast the effect could be even extreme and could cause really bad dizziness.

She told me that it was really easy to correct even if it takes time but with exercises it will get corrected. She told me that I have to educate myself to breath with my belly again and I should start by consciously lay down twice a day and practise the slow breathing with the yellow pages book. Then every time I will remember to do conscious belly breathing and eventually my body will just do it. I have to say that it was really effective and if I ever get dizzy again (and I get eventually) I do more conscious breathing and it gets corrected.

So I become a walking breathing, I will breath while stopped at a traffic light. I will breath with my belly when watching TV or when I was at a stressful meeting and I could feel a bit dizzy. You should try it as it is really effective!.

Mothers day walk

Happy mothers day to all my dear friends accross the world.

Yesterday was a very special day for me for several reasons. First it was nice to be able to spend mothers day with all the people that I care and care about me and second is even an honor to be able to do the annual walk of Latinas contra Cancer with all of them.

The expectation was that around 300 people will make the walk that started at 9 am, however San Jose City Hall had people waiting in line to be registered from 7:30 am. At the end more than 500 people did the walk that started with a big banner that was carried by all the kids from 2culturas (our Spanish moms group). It was a really nice 2 miles walk even if we had two accidents on the process, two people fall over when walking on some kind of holes on the road in middle San Jose, I hope they are doing good.

We made it to Mexican heritage plaza on time for the Mariachi music and entert to start, the plaza was full and it was a really nice atmosphere. Wwe had brunch while the music was playing and then they asked the survivors to come to the stage and after holding hands they asked for everyone who has lost anyone to cancer to join the circle and after everyone who knows of someone who had cancer, of course the full plaza was in a circle. It was very emotional and it was at that point when I lost it and started crying, it was a mix of feelings between happy to be supported by so many people and mad that there were so many people who are affected with cancer. It meant a lot to me to have all my friends with me there, I know some of them do normally have special activities for mothers day but they still make it to the walk and that meant a lot to me.

Leaving you here with my group of 2culturas photo, some people are missing from the photo but it is the mayority of the group who was there. Love each one of them!!

Having so much fun!

The past month I have been super busy but I am having so much fun that I really do not mind even if there are times that I feel really tired and promise Alberto that I am going to slow down.

First work is being really busy, NVIDIA is one of these companies that keeps surprises for you almost every day, there is always a fire drill, an emergency or something to be done that you have to drop everything and focus on but I really like that place and I love the people I work with so should not complain. Have had a hard time keeping my hours to 30 a week but more or less getting there and making sure that I am leaving that free hours for me. Many weeks I end up taking Friday offs as it is impossible during the week to take any time off but I more or less ok with the schedules as far as I can plan them with advance.

Then I have taken really serious the training and we have been walking around 20 to 25 miles (35-40 Km) a week. We are becoming experts on getting up on Saturday before 6 am and walk for almost 4 hours every weekend, and the most important one is that we are almost 8 of us every weekend!. Slowly we are increasing the miles and we are close to doing 15 miles in one walk!. Also I have started running training as I promised Alberto that I will do it, when I started I could not run more than one minute without dying, now I can run for 15 min at slow pace but I can do it!!. Yes for me!!!.

I have also been super busy helping Latinas Contra Cancer promoting their annual walk that happens this Sunday. It has been so much fun!, I was interview by Telemundo for their daily news and for a program called Enfoque that was air yesterday morning. I was soooooo happy how the interview turn up on TV yesterday that it looks like I have been doing that all my life!. I was really happy to hear that today the phone did not stop at Latinas Contra Cancer offices about the walk, it is a great result of all the work promoting the event. Yesterday also a nice article come at the local Newspaper about the walk and here you have the link to see the article that is in Spanish.

http://www.elmensajero.com/Caminata_contra_el_cancer

Also, I received a call from a friend from Spain and they have asked me to do an interview this week fo Diario de Navarra which I am super happy to do as I know is going to make my parents really proud. On Thursday I have got another interview by Celina Rodriguez who has got a very well known Radio program but they are coming to film and it is for a TV channel so I am not sure yet if the interview is for Radio or TV...What am I going to be doing after the walk?, I need to invent something to talk about!


I will tell you all about Sunday walk next week.

One of these moments

Last year after the shock of receiving the news of cancer I made a list of activities in my son's life that I have to be present at in the future and I must do everything in my power to make sure I am healthy for all these years to come and be able to see each one of them.

Some of these activities were first time riding a bike, first book read, soccer games, first school graduation, communion, first girlfriend, college years, wedding, his children.......

This weekend we did the first one and I was so proud of him and it was magical to see how happy he was with his own achievement. Attach is a proof of one of the videos I did.

When he went to bed, he said to me...."mommy, I am a big boy now" and I said "yes you are" and then he said " mommy, I love you", Ahhhhhh!. This is one of many more important milestones in his life, and I am delighted to be present.

Support me on Latinas Contra Cancer

As my friend Marcela will say I have got a mission in my life, it has taken me a few months to find two good ones but now I will be focusing on both of them:

1 - Susan G Komen or AVON as national support, these two organizations are the only ones who have got the power to make a difference on the fight against breast cancer so I will always support both or one of them every year. We have raised so far close to $40,000 for Susan G Komen, amazing!!!, thanks very much to everyone who has donated to the team.

2 - A local organization where I can make real impact to real people and that organization is Latinas Contra Cancer. I am really involved helping on their annual walk and I hope to raise some money for them.

To all my international friends you can help supporting this group by clicking on this link and register as "pledge" only and donate as little or as much as you can. Please indicate you are donating for my name.

http://www.cvent.com/events/2012-9th-annual-mother-s-day-walk-against-cancer/event-summary-141c0848cff6401a8e38e777bd62635d.aspx

Nervous break down for a few days

People who have had cancer will never be the same and will always have a cloud over them and wondering what is going to happen next. I think everyone I have spoken to who have had cancer a long time ago says that it gets better with time but that time has not arrived to me yet...

Last week I noticed that I had a brownish discharge and called my OB for check up. I have not gone to my OB office since last year breast cancer diagnosed so I had a level of anxiety going back to her office. She did the annual check up and after explaining to her what I had noticed she said that it was better to do a biopsy of the uterus as Tamoxifen could produce uterus cancer and one of the signs are bleeding. I almost fall over when she said she was going to do a biopsy there and then, it was like last year was coming back to me and I was getting upset by the minute. The biopsy was quick and almost painless and she did explain that she did not think it was cancer for several reasons but it was better to be checked. When she left the room I literally started crying like a child, I felt I was on square one again waiting for a result of a biopsy that could change my life even more. Alberto got upset with me as I told him not to come with me and when I arrived home and saw how upset I was he wished he had been with me there.

This was Friday afternoon and of course it was waiting time...I told her to send a copy of the pathology report to Dr Chen my Oncologist as I can get hold of her easier and quicker for results. I knew that if they did not call me on Monday or Tuesday the latest I would be OK as here they call you as soon as there are bad news, they are really fast on that!, today I could not wait any more so called them and the nurse called me back confirming that the biopsy come back negative to cancer and the pap smear was normal. OH MY GOD!!, what a relief!, I have been so stress and sleeping so bad for the past few days, now I can relax and wait for the next test I guess.....I just hope that it does get better with time!

Indentity theft - Here we are again

For everyone who follows my block will remember that my identity was stolen last year after I started my chemo treatment. For my European friends who might not know how identity is stolen is simple to explain, in the US if someone gets hold of your social security number, your date of birth and your name you are in big trouble!. With that information and Internet they can try to open credit cards, bank accounts, phone accounts and everything you can imagine. How can they do it when using a different address?, well really easy they ask for credit limits of $500 and most of financial institutions out there do not move a finger for security checks on checks for $500 so there are no any serious reviews if the request is genuine.

Last summer I went through hell to protect myself and my family, we changed bank accounts, we put theft alerts on all the 3 national bureau, I reported to the police, to the federal trade commission and who knws what else I did. We contracted a credit insurance which is a service that monitors any company that will ask for a credit report from you, in the US if you want to buy a phone and open an account with AT&T the first thing they do is check your credit report to see if you are a good customer to have. Every time anyone asks for any credit report about anyone in our family we receive an E-mail inmediatly. I so thought I had taken care of everything! but how wrong I was!!.

This weekend my tax person was filling electronically our tax return with the IRS (Inland revenue service or Hacienda in Spain) but it got rejected becuase SOMEONE has already filled a tax return with my social security number. WHAT!!!, You can not imagine how upset I got, not sure who that person might be but hell I will not answer to any logic reaction if in front of me. So....now my social security number is still out there and being used so I am now in bigger trouble to have more legal expousure myself.

Why somone will fill a tax return with someone else social?, two reasons I could think of, to claim a refund from the IRS or someone who is living ilegally in the US and is building their history for work purposes. So here we are again, this week I called the police and updated my report, put new alerts everywhere, called the Federal trade commission, talk to the IRS. Now I have to send a full repor to the IRS prooving who I am in case that person is claiming refund that the IRS does not go after me for the money. I also called the social security office to see if I should change my social, however they believe changing social will not solve any problems to me as my old one will still be in the market.

Now the question is.....what else are they going to do with my social???, if they have got the guts to send a tax return to the IRS I am really conccrned what else they will do.....

And yes I still believe this is a leak from the medical routes, someone has sold my data to someone but of course I will never find out who it got out there so will try to get stress about it!

Latinas contra el cancer

When I first was diagnosed with cancer I went to Internet asking for help, I wanted to know everything about my cancer, I wanted to be ready with every single doctor appointment and be familiar with all the terms that were going to be discussed. I also used Internet a lot to look for local support groups or for local associations that I could go to, not that I knew what I was looking for but I just looked for help. I found great support in English but I was really surprised that living in San Jose where the Latino community is large I did not find any supporting groups in Spanish.

When I started my conversations with Susan G. Komen to become educational speaker I found out that one of Susan G Komen board of Directors founded a Latino organization in San Jose called "Latinas contra el cancer". I google them and realized they are local support for the Latino low income families, the services they offered are education, case management,  support and patient navigation. I was really lucky to have a good medical insurance in the US and a fantastic group of doctors but I can imagine all the people who might not have health insurance and might not speak the language how difficult this process could be.

After I learned more about this group I knew I had to get involved so I sent a message to the founder Ysabel Duron offering my help and support. So today I met a group of them and agreed to be part of their committee for their next event which is a 2 mile walk on mothers day in May 13. I am delighted to help this organization and be part of a group so focus to make a difference for the people who will unfortunately be diagnosed in the future and will not have the resources that I was lucky to have.

Details of their event are Sunday May 13th 2012, registration starts at 7:30 and the walk is 2 miles. Cost of registration is $25 and that covers a T-shirt, brunch, music and raffle tickets. It is a great event to celebrate mothers day and the funds are going to be used locally for a fantastic cause. Hope to see all my local friends there!

Herceptin II

Have not written for some time which suppose to be a really good sign as I am really busy between work, walking and social events...

Need to give an update about Herceptin as all my worries and concerned have been for nothing. As I mentioned before I had a MUGA scan done in February that showed that my heart muscle was weaking and the heart injection had gone from 66% to 56% so I had a risk of having to stop Herceptin. The thought of not finishing my full 12 months protocol of Herceptin got me really nervous and allowed my mind to go wild on what will happen if I had to stop.

Last week I went to do a new MUGA scan, my doctor prescribe this time Valium to have my heart at the more relaxing state. I hate to take pills and specially the ones that make you drowsy so I did not take it at home but took the pills with me to the Hospital. I had a different technician from the one that is normally there on my previous tests, and I mentioned about the Valium and he told me: "I do not think you need it but it is up to you". They first drawn your blood, then they mix it with the radioactive dye or whatever it is and half an hour later they inject it back and they lay you down in the scan. When he started the process, I started my thousand questions that I normally do when I am nervous......and after the question number 20 he said: " I think you should take that Valium!". At the end I took half of it as I was too scared to take the full pill and make a fool of myself falling complete sleep at the scan table!, I kept imaging myself not being able to wake up and they would had to leave me there until the effect of the pill will finish. When I took it, he did not allowed me to go back to the waiting room, I had to stay there with him in case I had a reaction from it.....So I spent 30 min with him while he danced for me, he sang who knows what and told me everything about his life, bless him!!, have to say he was quite entertaining. After that time the scan started and by them Valium was doing something as I was really relaxed!, the scan is in three series, two of 5 min and one of 10 min and during that time you have to hear your heart monitor doing the "beep, beep...." which is really annoying.

The scan was Tuesday and Dr Chen does not work on Wednesday so I had to wait until Thursday morning for her to call me with the results. She did call me early in the morning and my result was 70%!!!. I had a feeling that my scan was going to improved but I did not expect the 70%, she did not say much apart from great and very impressive results and lets talk more about it on Monday.

So I had my Herceptin treatment yesterday and talk to her about the scan, she says that sometimes the dye they use might not do the work and the reading is incorrect so she is going to disregard the Feb scan. She can explain why I am higher than Nov one: I am doing much more sports than last year, but she can not explain any magical recovery in 6 weeks of my heart from Feb to March scan. So my question to her was: "how can I trust this scan going forward?", she says she does trust it when it is high, when it is low we look at it more closely (do more scans) to see if it is correct.

Yesterday I had a full check up, my blood results are great and even if I am still doing Herceptin every three weeks, she does not want to see me until July!!!, I am kind of going to miss her that I have been seen her almost every 2 or 3 weeks for the past 9 months!.

I am starting to believe that the big changes that I am doing in my life are starting to pay off, eating healthier, doing more sports and in general enjoying my life is making a big impact on me and the results around me are speaking by itself. I think I have said it before but it is ironic that I am probably now the healthiest that I have ever been.

Herceptin

I have now being taking Herceptin for around 20 weeks, Herceptin is one of the most powerful drugs for breast cancer HER2 positive out there that can help up to 50% recurrence of the cancer. However it is still relatively new drug and not much is known about how much, how long and how often to use it. The US has taken the protocol to administrate the treatment for 12 months in early stage breast cancer, while European countries only do it for 3 months in same cancer stage. However as my doctor explained today there is no evidence yet to know which one of both protocols is the best.

There is only one side effect from Herceptin and it is that could weak your heart muscle and for that reason they do what is called MUGA scan every 3 months. You can google MUGA(Multi Gated Acquisition Scan) scan and will tell you it is a nuclear medicine test that determines the efficiency of the individual heart valves. It is measure in % and the normal range is anything over 50% but it is really rare to have it over 70% or saying another way it is really rare to have a perfect heart or 100%. My first MUGA scan back in July had a whoopy 66% which could be considered really good. I had another one done after chemo and it was 64% which was great considering that Adriamycin could affect your heart. I had another one in February and had gone down to 56% so that puts me into the category of "have to be watched very closely from now on".

I will have my next MUGA scan in the next two weeks and my doctor has said that as soon as my scan shows anything lower than 50% she will stop Herceptin. The good news is that it is reversible so your heart does recover as soon as you stop so this does not mean that your heart is not going back to normal. The bad news is that for me it is really important to finish the protocol, it will make me feel better to know that I have gone through all of it. I could go back to Herceptin later on if needed though, just will not be able to go now while my heart is not strong enough.

For now my doctor seems quite relax, I even asked her if I could be doing more aerobic exercises like running or zumba and she says that the heart condition does not stop me of doing anything, I only need to watch my body and if I get tired I should stop but that is about it...We have been doing long walks in preparation for the Susan G Komen walk and I feel I can start doing something else!.

1st Annual Connor Johnson Invitational - Connor Johnson Invitational

I have known Mariam for over 10 years now and it was devastating when we found out that Connor had been diagnosed with a really rare brain cancer. This is an event that they have put together to support the pediatric brain cancer research at Packard in Stanford.
This is a note that Mariam sent out and the link of the event. Please support them if you can.

The Oz Foundation is generously hosting a special golf tournament on May 27th in honor of our late son, Connor Johnson. Connor was diagnosed with a rare brain cancer called DIPG in February 2010 at only 3 ½ years old. Most kids with this diagnosis live less than 9 months and the horrific prognosis for this disease has not changed in 35 years. Our Connor lived a wonderful 16 months and was 5 when he passed away last year. We miss him terribly. He was our ray of sunshine and brightened a room with his infectious smile. Please join us to change the odds for these kids and help derive a better prognosis. We are not too far off but we need your help.

The event is for adults and kids--golfers and non-golfers. It will be fun, come golf with your family. There will also be a silent auction. 100% of proceeds will go towards pediatric brain cancer research. Even if you can't make it, you can donate through the website. Thank you!

http://www.connorjohnson.dojiggy.com/

Life is so freaking cruel!

What do you do when you are so upset, when you feel so imcompetent that you can not do anything??. Everyone who knows me will tell you that I just drop everything when someone is in need and I can do something to help. But I hate with every part of my body when someone needs help and there is nothing I can do to help.

Someone gave me some news today that make me feel sick to my stomach, someone who is fighting for her 7 year old son's life for a long time and things are not going as good as expected. I can not even imagine what it is to go through a cancer treatment with a son or daughter, I can say how hard it is to go through a cancer treatment but I warranty you that it has to be thousand times harder to go through it with your own son!.

Only thing I can say is that we are here to support each other and I just HOPE that there is a solution and other options out there for Mario. How difficult is to bring a sick child from Spain to other part of the world?, if I could do anything to help them...

BUT you all can do something to help: DONATE BONE MARROW TODAY!!!

Some people are amazing!

When I went to the Susan G. Komen meeting last month with Lorraine they talked about this person in particular called Bridget and her story caused me amazing admiration. I come across her blog by chance on Internet the other day and after reading her story I am even more amazed and feel bad about even complaining any more about anything that happens to me.

She was diagnosed with stage IV breast cancer at 21, she was diagnosed too late and cancer had already spread to the liver. She has gone through 6 years of multiple surgeries and really strong drug regime, she got married and went on honeymoon in the process and holding really strong today. I talked to her the other day as I loved a message that she posted related to Susan G. Komen and I want to share it with all of you here. I am becoming a strong supporter of Susan G. Komen as well so I am delighted when I see messages like this one.

We will walk this September in San Francisco Gooooooo PINK MELTING POT!!, we will keep walking until we find a cure!.
Susan G. Komen

I Stand With Susan G. Komen

Many of my friends, family, and blog readers have approached me over this past week because anyone who knows me knows I am in love with the work of Susan G. Komen for the Cure; I am a walker, a survivor, and a 3-Day Coach. Last week, when the news broke that Komen for the Cure decided to cease future funding of Planned Parenthood, thousands of women and men hit the internet to object. I will not revisit last week’s media firestorm. Plenty of people have already done more than enough recapping of every twist and turn.

Instead, I will share the reasons why I continue to support Susan G. Komen for the Cure. I will include links to absolutely everything I mention, so that anyone interested in learning more can learn more, and can do so by going directly to the source.

Deb

When I was first diagnosed with Stage IV breast cancer in 2005, I went to events put on by various other breast cancer organizations. At those events, I was surrounded by women with gray hair and grandchildren. I came home in tears, and felt so much older than 21 years old. Other organizations left me, a young cancer survivor, feeling so very much alone.

Deb, a 30-something breast cancer survivor, changed all that for me. It wasn’t until Deb, a spunky little gal with flowing brunette hair, a sweet Southern drawl, and two little boys, stopped by my chemo chair one day that I finally realized I wasn’t alone at all. You see, Deb stopped by chemo to drop off literature about her support group called Breast Friends, a support group funded in part by Susan G. Komen’s Maryland Affiliate. Breast Friends was a support group for women under 40 who had been diagnosed with breast cancer. At the time, I didn’t even know there were other women under 40 with breast cancer, and this same wonderful Deb didn’t just offer support. She also offered education. Deb was the first to say, “Bridget, you should tell your story. You should go to schools and tell your story. You could save some lives.” So, you see, Komen gave me support and Komen gave me a voice.

Ann

Komen’s impact on my journey didn’t stop there. In the past six years, I have seen 10 different doctors about this cancer, and, while every doctor saw my concerns about having babies and getting married as understandable concerns for someone in her 20s, no doctor actually took those concerns to heart. No doctor, that is, until Dr. Ann Partridge at Dana Farber Cancer Institute. Dr. Partridge, or “The Boss” as she is known around my house, never told me to “worry about that later.” Instead, she helped me take action to preserve my fertility. She offered to plan my chemotherapy around my wedding and honeymoon. She offered me a chemotherapy drug that wouldn’t cause hair loss, so that I’d look my best when I walked down the aisle. She even offered to answer any questions my soon-to-be husband might have about my cancer before the Big Day. Now that’s a doctor! Dr. Partridge is the kind of doctor who thinks about the well being of the patient and the well being of the caregiver.

I am proud to say that Dr. Ann Partridge’s Young Women’s Program was funded by a three-year $1.35 million Susan G. Komen for the Cure grant. Not only that, but in addition to providing this program to lucky Dana Farber patients, this Komen grant allows “The Boss” to implement her Young Women’s Program in hospitals across the country, so that every young woman can get the same stellar, personalized care I’ve received regardless of where she happens to live.

So, as you see, I was supported by Komen, I was empowered by Komen, and I was cared for by Komen. But, have I been cured by Komen?

The Cure

I can honestly say: I wouldn’t be alive today if it weren’t for the research of Susan G. Komen for the Cure.

I have been on 15 different drugs during my six year battle, and every single one has been touched by a Komen for the Cure grant, including Herceptin. Herceptin is a drug that targets my particular type of breast cancer and, in clinical trials, Herceptin has been found to reduce the risk of relapse by almost 50%. Herceptin has been the one constant in my dozens of “chemo cocktails.” Herceptin is in my current cocktail; it’s being used in combination with my friend Taxol. Herceptin is not a cure, but Herceptin is keeping me alive, and Komen gave me Herceptin.

But that’s the past. What about the future? Well, I can tell you that currently, Komen is funding 572 research projects totaling more than $300 million worldwide. In 2009, “The Boss” referred me to a clinical trial led by Dr.Leisha Emens at Johns Hopkins University. Dr. Emens is developing a vaccine that teaches a patient’s immune system to fight her breast cancer on its own, and the trial is having some fantastic results. While I was unable to get the vaccine because my cancer began progressing unexpectedly, I believe this vaccine idea could truly be the future of breast cancer care. Dr.Emens’ trial was funded in 2006 by a $300,000 Komen grant. To learn more about the other exciting clinical research that Susan G. Komen funded last year alone, click here.

I Will Walk

Last Wednesday, when this news first started breaking in the media, I was at the hospital getting chemotherapy. I thought that was pretty ironic…my afternoon was about to get even more ironic! That afternoon in the hospital actually helped me deal with the onslaught of unsettling news stories. Last Wednesday, during a routine blood draw, I found out that the tumor markers in my blood had increased from 75 to 99, a preliminary sign that my chemotherapy regimen might no longer be working. When the whole world began debating and questioning Susan G. Komen’s work, my cancer turned out to be a gift. I needed a reminder, and this news was a poignant reminder. I was able to see that, for me personally, the news about Susan G. Komen mattered, but it didn’t matter enough to sway me from the heart of why I walk.

So what did I do after I learned that my tumor markers rose from 75 to 99 last week? How did I cope with the news? I registered to walk in the 2012 Susan G. Komen Washington, DC 3-Day.

I walk because I have to go to chemotherapy every week, and I don’t want anyone else to have to live that life. I walk because I live with the heavy burdens of fear and doubt every day, like the fear and doubt piercing my heart tonight as I think of my rising tumor markers. I walk because I know that over the past 6 years I have been on 15 different drugs, and all 15 of them were touched by a Susan G. Komen grant. I walk because, while there are other charities out there, no one comes close to funding research the same way Komen does. I walk because this cause is too important to walk away. I walk because today someone is going to die from breast cancer, and I walk because I don’t want to die from breast cancer.

No other organization has had my back like Komen for the Cure, and now it’s time for me to return the favor. Together, we will move past this. I believe we have already started moving, and I believe we are moving forward. I believe we will come out of this better, wiser, and stronger than before.

I hope each of you will be walking beside me this October, but I understand if that’s not the case, and I respect and support that. I wish all of you all the best. You are important to me, and I thank you for your service to this event and to the fight for a better world.

What is my bra size?

As I mentioned the other day I had to go back to the plastic surgeon office in order to be injected with more water and to decide what size I might want to have during reconstruction. Well, first I went to be measure and I thought that was a bit of an adventure.

The doctor send me to see someone in Nordstrom, I guess that person might be a friend of the doctor and I am sure she was going to treat me really nice. But no...I went there after work and I wanted to go home early to go for a walk so I did stop at Macys as it was more convenient to me. Not sure if anyone who lives in San Jose has noticed this but if you go to Valleyfair to the bra sessions in Nordstrom the people who work there are young and really nice. But if you go to Macy's the age of the people working there is much higher and some are not that nice. This department reminds me sometimes of El Corte Ingles in Spain where sometimes you might be lucky if you get a smile, and many times you feel like if you owe something to the person who suppose to be helping you.

Anyway, first I had to get the attention from someone and I told that person that I wanted to be measure. She told me :" you will have to wait, I am with a customer", I thought great, this is not going to start well, it would had be nicer if she would had said:" I will be with you in a second". After looking at all the new bras around to make time, I had to go and find someone again as it was obvious that woman was not going to help me. I manage to get another one who did not look very happy but she agreed to do it, we went to the fitting rooms and I told her I was not planning to take the clothes off, just wanted an idea of the size with the clothes on....I had to listen to a lecture but I was not going to go into explaining I did not have breast.....She told me I could be two different sizes depending on the bras and she rush out like avoiding any question I might ask, not before saying you have got a really small breast. I looked at the door, thinking she was just taking the piss but I think she was serious.

So now I knew my size more or less, needed to go back to the doctor and decide what we do with the size. He said that if I want to be a size smaller from what I have now he needs to inject me additional 60 ml of water so if I do get fibrosis the breast will not contract to lower than the size I want. He injected the additional 60 ml and I guess by now I am close to DD or E or who knows and it does feel huge!. How people with large artificial breast manage?, I have to say that is a big difference between natural large breast or artificial large breast as it is like a stone you have in front of you.

I did this on Wednesday and I did not sleep that night, neither Thursday. I was in pain, I could not lay down and I felt like my temporally implant was about to explode any minute. There was no way I could live like this for another 10 months....I kept imagine the coming summer where you wear less clothes, I could see myself getting some unwanted attention. So yesterday morning I called my doctor again and ask them if they would see me that morning, they were so nice to fit me in the same day and he laugh when I told him that sorry I could not live with that breast. Monica and I were on the way to San Francisco to the Spanish Embassy  to register Ethan in the civil register after 5 years!, but before we stop at the doctor's office. He took out the 60 ml of water and I could breath so much better....My breast is still bigger than what should be but I can live with it for a bit longer.

Back at work life

I am loving being back at work but what I am loving even more is being able to do only 30 hours a week. I have to consider myself one of the luckiest people on earth, and probably is true.


I had worked in NVIDIA for 10 years in the UK and the US when I decided to leave last year in May to take another role in another semiconductor company. I have to say that the new role was perfect for me running their finance department for their US and Latin America offices. I was not sure about the company as it is a European old fashion tech company that I was hoping with new management would had changed but when I joined realized how bureaucratic it is. Also, I have a really hard time working in environment where the management team has more privileges than any other employee just because they have vice president title: they can fly Business class when you are on the back of the plane, they have got more vacation than you, the company lease expensive cars just to drive from home to the office, they even have got special annual medical check ups that the company pays on top of any normal insurance. I am from the mentality that these differences affect productivity and normally example has to be shown from the top and not from the bottom....If I would had known this I probably would had never joined them but I did and as I said I loved the job a lot.

Unfortunately I was diagnosed with breast cancer two months after I started working with them and I went on 6 months disability which it was easy for me as I was still not attached to the job and the people. Everyone was super understanding and supportive, what can they do anyway....However that role requires me to travel a lot as well as a lot of effort to do the changes needed for improvement and meet the expectations from everyone, and do not forget that you need to prove to everyone that a Spanish girl can run a finance department of a US company. Well, this cancer was a wake up call for me and one thing I have learned for sure is to take my professional life much easier and put my personal life as a priority. For that reason I could not come back to work there, I needed an option.

NVIDIA people had been so supportive, that I called the CFO and asked her if they will take me back. We arranged for a lunch meeting and I was super happy to learn that I could go back to my old role and they will accept the only condition I was asking which was 30 hours a week!!!. So it is really nice to be back but still leave work at 3 pm and go for a walk, cook dinner and spend a nice family evening together. I am still on education mode which means that some people are still setting things up for me during my none working hours, some I accept, some refuse but slowly they are getting use to my new working hours.

As I said I am really lucky, no many companies will allowed you to do that in the current environment plus I can also afford that as I know many people even if they might want to give up their job they can't do it as they need the money.

What size do you want?

It has now been a month since I finished radiation and have to say that my skin went back to normal really fast despite the horrible burn that I had. I have also started the 5 year pill,Tamoxifen, the day after my last radiation treatment and happy to say that I have not had any side effects that everyone tells you about which is great.


The other day I went to see my plastic surgeon and we agreed that I will not be doing reconstruction until sometime early 2013, first reason is because temporally expander are doing great and second because he prefers not to get me into surgery while I am on Herceptin. I have to be in Herceptin until early November this year, after that we will give it around 2 months break and expected to do the surgery in January or February 2013. Everything was great until the day after my visit that his office assistant called me and said he wanted to see me again.....I was....Uh....why?, but she did not know why, So I told her that I was sorry but I was not going back to their office until they would tell me why. So he called me and he said that he had a meeting at the hospital board and he saw my radiologist, they talked about me....I would have loved to listen to them....and my radiologist told him how bad my skin had reacted at the end of the radio treatment. Then my plastic surgeon asked him to forward the latest x ray and they agreed by looking at them that the internal burns were high as well, I do not feel anything by the way..SO, he thinks I have got small risk to have fibrosis and that will be devastating for the final breast reconstruction. The intention of the visit is that he wants to inject me more water and force the skin to be more tense so we avoid that small risk of fibrosis.

So last Friday after being at the hospital for my quarterly MUGA scan, I went to see him and discuss face to face what he wants to do. I understood perfectly what he is trying to do but I really do not want to make my breast any bigger....So he injected 60 ml of fluid and now they feel huge even if they are still smaller than they were before the mastectomy. He asked me to go home and think about the size that I want next year!!!, and I told him I have got no idea...how the people who increase their boobs made that decision!, the reason why he wants me to decide now is that if I do get Fibrosis the area will get reduced by skin and tissue contracting so whatever size I want he has to make now one size bigger!. So if I want to be a B, I have to be a C this year, if I want a C have to be D for the time being...too complicated and uncomfortable!. So I have not decided...can I be between B and C?, or can I have an implant that changes the size depending on the clothes that you wear.......they are definitely going to look great but still have not decided what to do. I am going back on Wednesday afternoon to see him again and suppose to say something by then!.

Also!, I told him that my final reconstruction will be permanent implant and not tummy tuck, sorry but even if I can do two things at the same time it is too big of a surgery so no thanks!. But....he told me that they will do a small liposuction as they use the fat in your tummy (which I do have) to fill out the breast around the implant to make it more natural. Something good has to come up from this process I guess!!

New reality

I had this conversation with my mom the other day and we did not get to the right answer....20 years ago were there so many young people sick or I was just ignorant when in my 20s and I did not realize people were sick around??. The answer from my mom in particular about breast cancer was that when she was 40 there were many people being diagnosed with breast and ovary cancer but there were normally older people. My grandma was diagnosed with breast cancer when she was 66 more or less and one of her sister had breast cancer twice on her late years but never died of breast cancer. Now a days the people diagnosed with any type of cancer are younger and younger and I wonder everyday why.

When my son was two he was sick all the time, we could not figure out why and I behaved like a paranoid mom being at the pediatrician office almost every week. We thought he was dairy allergic as he was sick every time he will drink his milk, well.....we found out after some test that he is super sensitive to beef and cow's milk, and he is moderate to high sensitive to lamb, pork and some cheeses. Have you ever heard of anything like that?. We took all meat away from him (he still eats some chicken) and cow's milk and he has been since then like a new kid.

My point is....., is it what we eat?, is it what we breath?, what is it that so many people are suffering. Having cancer has made me meet many wonderful people who I have always said are the strongest of the strongest people you will find out there. People like Ainara who at the same time she is fighting with her own cancer she finds time to battle for everyone else's. People like Blanca that while going through Chemo makes me laugh every time I read a message from her. People like Marta that even if she got sick the other day, she is my key person to talk to about our illness. People like Janire that needs a bone marrow transplant as soon as possible, just lost a close friend for the same reason but still fights like mad to make sure there is enough education in Spain about bone marrow transplant. Or people like Paule, who has gastric cancer and just started chemo last week. People like my friend Mariam who is trying to find a way to live after losing her 5 year old to cancer 6 months ago. Or people like Eva who is in Madrid next to her son Mario who 12 days ago received a bone marrow transplant and is still in critical stages. People like Eva and myself who are trying to find our way back to normal life.Why is the list so long????, was I blind before and I lived in wonderland?.

Please sponsor us!!

I am super excited!!!, so far we are already 12 friends to do the Susan G. Komen in San Francisco. We have committed to raise between all of us $27,600 and we have so far already raised $2,970!!. If we do not raise that money we will not be able to make the walk and there is nothing that I would love more than walking 60 miles or 97 Km with these group of wonderful ladies.

Please sponsor one of us, the team web site is below. Even if you can only do $1, that is better than nothing.

Thanks very much in advance
Mila

http://www.the3day.org/site/TR/2012/General?team_id=203039&pg=team&fr_id=1768

How to raise money for Susan G. Komen

My dear husband sent all of us an E-mail the other day that you should all look at....I think it is very funny and some ideas might be good but this is how my husband is helping us!:

- Calendar girls -> you are 11 so far. You will need a new volunteer to complete the year. I can be ”September” if a 12 person doesn’t show up… You welcome!

- Plasma Donation: How to sell your blood for $260 a month – (http://madhubber.hubpages.com/hub/plasma-donation)

- Sell your own stuff on eBay or Amazon -> Even if you believe what you have in the garage is just junk… Well! It is but there is always someone out there ready to buy. Better than Yard Sales (For British : Car boot sale) because you do not need to display all your “miseries” in front of your neighbors.

- Offer your Services to Neighbors -> Babysit, handywoman, teach something to others, Dog walker

- Vegas -> Gambling. It is not my “cup of tea” and very risky but I know some of you have issues with this activity and might work when is for a good cause.

- Money box – This would be for all those coins that end somewhere in the sofa, underneath furniture.

- Metal Detector -> This is more for Summer season and the beach. Get one (Starting at $49.99 in any convenient store) and look for coins, gold, etc… meanwhile you walk (Training). This way you make of the training time a money machine maker.

o Go to http://goldprice.org/ for more information.

- Hand reading – You can make a fortune in short time doing this. For a quick course go to: http://www.wikihow.com/Read-Palms. And watch this video http://www.youtube.com/watch?v=XSbXfGRFBLg&feature=related.

Please donate on http://www.the3day.org/site/TR/2012/General?px=6469313&pg=personal&fr_id=1768

Susan G. Komen 3-day walk

Now that my main cancer treatment has finished it is time for me to start doing something in the community that will help the fight against breast cancer. There were two options for us: Avon walk in July and Susan G. Komen in September. As many of my Spanish friends are going to Spain during the summer we agreed to do it in September.

Susan G. Komen 3 day walk is in San Francico and a total of 60 miles during 3 days that is full of experience. Lorraine and I went to a meeting the other day and it was really emotional, can not wait for the event to be here. However before that happen we better start training properly as 60 miles is almost 100 Km that I have never done in my life in such a short period of time!!!.

So far we will be around 11 of us, including Cheryl Sole, 5 year survivor. Marta Solsona, breast cancer fighter with me. And all my dear friends Fiona, Lorraine, Marcela, Monica, Gema, Neus, Rosa and probably some other friends that we might get to join us. Our team is called "Pink melting pot"

100% of the net proceeds from the Susan G. Komen 3-Day™ benefit Susan G. Komen™ and fund innovative global breast cancer research and local community programs supporting education, screening and treatment. Virtually every major advance in the fight against breast cancer in the last 30 years has been impacted by a Komen grant.

Please take a moment to see our page and please sponsor us on any amount you can, small is big so please $1 will make us very happy. Each of us has to collect $2,300 in order to do the race, but we will find whatever way we can do to make it!.

http://www.the3day.org/site/TR/2012/General?px=6469313&pg=personal&fr_id=1768

DE BOCA EN BOCA Y DE MEDULA EN MEDULA: Comunicado de pacientes sobre la donación de médula en las redes sociales

 

“Las personas que esperamos una donación de médula nos sentimos marginadas, exigimos al Gobierno campañas de sensibilización”

“Las personas en lista de espera de donantes de médula tenemos que acudir al Do it yourself-háztelo tú mismo intentando conseguir donantes en nuestro entorno, en vez de contar con el apoyo de Sanidad”

Como pacientes afectados unidos a través de las redes sociales (Facebook, Twitter) , que precisan o pueden precisar de un donante de médula y con el apoyo de otros muchos afectados por otras patologías y gente concienciada creemos importante dar a conocer el sentir general de las personas en espera de donante:

Independientemente de la guerra abierta entre la ONT y DKMS y sus problemas legales, nos indigna que la dejadez de las Autoridades lleguen a este extremo (La donación de médula, paralizada por las deudas. La Verdad) y comunicamos que:

1- La sanidad española debe recapacitar sobre el sistema español de donación de médula ósea y reconocer que se necesitan profundas mejoras. Es un sistema obsoleto y no funciona.

Se debe desvincular la donación de órganos de la donación de médula. En un país indiscutiblemente pionero en donaciones de órganos donde el sistema es un ejemplo para muchos países , estamos a la cola de donantes de médula ósea con sólo 90.000 donantes en 20 años. En España, aparece donante sólo para el 60% de los pacientes en búsqueda.

A modo de ejemplo respecto a número de habitantes (www.bmdw.org):

PAIS	Nº DONANTES	% HABITANTES DONANTES
Alemania	4.312.965	2.5%
Estados Unidos	7.000.000	2.5%
Chipre	111.976	12%
Israel	700.000	10%
Portugal	261.144	2.6%
Brasil	2.213.160	1.5%
España	88.382	0.2%

Nos sentimos marginados. Sin campañas de concienciación ni sensibilización que ayuden a fomentar la donación de médula ósea en España, somos los propios pacientes y allegados los que tenemos que hacer campaña, la mayoría de las veces, encontrándonos con trabas, impedimentos y desaprobaciones por parte de las autoridades sanitarias de cada Comunidad Autónoma.

Por eso pedimos que:

- Se realicen campañas de información en medios de comunicación promovidas por el ministerio de sanidad sobre en que consiste la donación de médula dando a conocer el procedimiento de aféresis, método utilizado en el 80% de los casos y gran desconocido, con el cual no hace falta anestesia, ni es doloroso ni peligroso para el paciente.

- Se publique información en los CAP, Centros de Atención Primaria dependientes de la Sanidad Pública sobre la posibilidad de donar médula ósea o sangre de cordón umbilical

- Se informe a los donantes de sangre en los lugares de extracción de sangre sobre la posibilidad de donar médula ya que ellos son los potenciales donantes al tratarse de sangre.

- Se permitan las campañas masivas con la imagen de una persona en concreto. Los pacientes no vemos ningún problema en ello siempre que se aclare que la donación es universal y puede ir dirigida a cualquier persona en el mundo. Si las leyes actuales no lo permiten, pedimos que las cambien. Es evidente que esas campañas funcionan por que lo hacen en otros países y creemos que la única razón para que no se efectúen es el coste de los tipajes (análisis que deben hacer a cada donante para incluirle en el Registro) que tiene un coste de 300€.

- Se terminen con las trabas, impedimentos, saturaciones y que se producen en los hospitales para donar médula cuando un caso particular sacude un territorio determinado. Deben poner los medios suficientes, agilizar los temas burocráticos y ampliar el horario y facilitar las donaciones en esos casos puntuales.

- Se informe obligatoriamente a todas las embarazadas como norma y derecho de las mismas sobre la posibilidad de donar su cordón umbilical.

2- Estamos de acuerdo en que DKMS debe cumplir con la legalidad antes de actuar pero no debemos olvidar que la mayoría de los donantes (mas del 50%) que se reciben para pacientes españoles son de Alemania, y de estos, la mitad son donantes de DKMS.

Por tanto, hasta el momento y desde hace 20 años, sanidad ha estado pagando el importe que cobra DKMS por cada uno de esos donantes alemanes. No entendemos por qué nos hablan de privatizaciones. Esos 14.000 euros hasta el momento se han cobrado a sanidad, NO AL PACIENTE.

Por otra parte, todos los registros del mundo cobran aunque al no ser oficiales desconocemos las tarifas de cada uno de ellos.

Hay que valorar también, el gasto para sanidad del coste de los tratamientos y medicaciones que cualquier persona en espera de donante consume mientras aparece su donante compatible.

Por eso consideramos que la cantidad invertida en donantes, acortaría el tiempo de espera de los pacientes con lo que al final se ahorraría en costes para la sanidad.

Con esto no nos posicionamos a favor ni en contra de que DKMS entre en España, si de que haya cambios sustanciales en el sistema sanitario respecto a la donación de médula ósea con urgencia.

3- Por último, queremos solicitar a los medios de comunicación, ayuda para dar a conocer la verdad del funcionamiento de la donación de médula ósea y de cordón umbilical en España, aclarar en que consiste y desmitificarla.

También os invitamos a todos los medios de comunicación a que se sumen a la campaña #donamedula para que todo el mundo hable sobre la donación de médula en las redes sociales el próximo 24 de enero de 12.30 a 13.00 horas. Queremos poner de moda esta etiqueta con el objetivo de conseguir el mayor número de personas que se hagan donantes.

Somos un país generoso en donaciones de órganos, si no hay mas donantes de médula ósea y de cordón umbilical en España se debe a la falta de concienciación por parte de los Organismos que deben velar por nuestra salud.

PELONES PELEONES-UNETE!

FIRMA TU TAMBIÉN ESTE COMUNICADO LLEVANDOTELO A TU BLOG Y/O REDES SOCIALES