Wednesday, July 6, 2011

Updates from March to July 6 2011

Feb 1st 2011

Hi everyone,
I got some results yesterday and it shows a cancerous tumor of intermediate aggression level, but the ultrasound suggests it may be localized. The radiologist said he thought the tumor was small, but we don't have those reports yet so till we get those we won't know much more. No Vascular space involvement is identified, not quite sure what that means but I'm told it's a good thing. There's still a lot of tests to do and I am meeting with a Breast Surgeon next Monday Feb 7th, who is world renowned in his reputation. But of course as with all the best Dr's he does not take my insurance!

Sorry to do a mass email like this, but it's the only way I can keep everyone informed without spending my entire life on the phone.
Thank you so much for all your love and support,
love Tricia

Feb 7th 2011

So we met with the surgeon today and got the MRI results. The area of DCIS (very early cancer) is a lot larger than we had thought. 5.6cm in depth and the length was about 3-4cms. Although DCIS is much better than an invasive tumor (I have that too but it's only about 1cm) it is still treated medically the same way as cancer, as if left untreated will become invasive cancer. Because this takes up a large portion of my lower breast, he thinks he may not be able to save my breast. He thinks I probably will need a mastectomy. He also said that if I had a lumpectomy I would need reconstructive plastic surgery, and the re-occurrence of the cancer returning is higher.

I am having a more tests this week, bone scan, PET CT, consulting with plastic surgeon and checking to see if I have the breast cancer gene. I have been asked to stay away from small children after the PET scan for 24 hrs because I will be radioactive (ie no hugging and holding them) so I think I may need a place to stay on Thursday as there's no way my kiddies will go for that! Any offers of alternative accommodation! I promise no hugs or kisses for your children!

Meeting the surgeon again next Monday to discuss all the results and I expect he will schedule a date for surgery then. It will be major surgery, and then a second surgery for completing the breast reconstruction. I was very touched by how sensitive the surgeon was, and how caring and warm he and all his staff at St John's were, right down to the hilarious venopuncturist! When the surgeon walked into the room we could both feel his compassion and regret about the possibility of losing my breast. I am still trying to deal with this, and not get too fearful about the other tests. If the worst thing is I lose a breast and get new perky L.A. breasts instead, and that saves my life then I will be grateful.

Thanks to all of you who have offered so much support,
love Tricia xx

Feb 14th 2011

Hi Everyone,
Happy Valentine to all of you! I had such a lovely evening with George. He has been such a rock to me, so supportive and loving, and he has spent every spare second researching the latest studies on breast cancer treatments that both western and alternative medicine have to offer. I have not had to deal with the burden of this, and I am so grateful to have his knowledge, expertise and dedication in doing this for me, although of course it will ultimately be my decision as to what treatment options we go with.

What we know about the tumor is that it is what they call a Triple Positive meaning it is estrogen and progesterone positive as well as HER-2 positive (which is a more aggressive form of cancer but also responds well to recent treatment advances). Tomorrow we are consulting with an Oncologist running a clinical trial at UCLA which is showing extremely promising results in my kind of cancer. My breast surgeon is recommending me for this study so we will see what they have to say and if we feel that is the safest option for me. It sounds like they are going to recommend chemo though, no matter what options I go with, but in this case chemo responds better to HER-2 cancer than it does to other breast cancers, so this is something for us to consider.

The bone scan and PET/CT scans came back clear which was really good news.

More news to follow, and thank you again for your prayers and good wishes. Also thanks to my dear friend Carmela who has taken care of my kids so many times over the past few weeks at short notice.
lots of love Tricia xxx

Feb 28th 2011

Hi friends and family,
Finally it looks like we have a treatment plan in place. I got accepted for the study, and I got into the study group I wanted to be in where I get an extra drug that has been having great results with my kind of cancer, and has been previously only used for advanced breast cancer. I have chosen to have chemo/drugs before surgery on the advice of my doctors and the one advantage of this is we can see if the tumor is shrinking and how well it's responding to the treatments. At the end I will still have surgery but if the drugs work I might not need a mastectomy. So fingers crossed that the drugs/chemo work. I am very thankful to George for all the time he has spent researching like crazy, wading through all the studies, research and general bullshit which saved me having to do it, would have been very stressful to do it alone.

We are doing OK as a family. When I initially told Eliza that I was having a surgery and they were going to take off my boob and make me a new one she laughed and said "you're joking right?" when I promised her I wasn't joking and explained about my boob being diseased, she said "but Mummy, only God can make boobs!" After picking myself up of the floor, I replied "well God also makes very clever people called plastic surgeons who can also make new boobs".

Then when I broached the subject of losing my hair I asked her "Eliza how do you think I would look with short hair?" she replied "I think you would look babyish, ugly and stupid!". Straight from the mouth of babes! She is actually quite upset about me losing my hair, and got a little tearful about it. But when I told her she could come wig shopping with me and try lots of wigs on she cheered up, bless her.

Talking of wigs, while at the hospital the other day (my new second home) I took a peek at some of the wigs they sell in oncology. These wigs were synthetic hair, nice but not as nice as real wigs. They start at around $150 upwards, and the real hair wigs range from $600 - $1,000. I asked the lady if my health insurance would pay for my wig. "Certainly, she replied, let me check how much your insurance will cover". A few minutes later after calling my insurance she said "They cover $35" After we had both finished laughing about that (where the fuck do they come up with that number???) I had a brain wave. As I remember when I was Halloween shopping with Eliza, her Snow White wig cost around $30, as do most of the Disney wigs, so I guess I'm going to have to be Snow White or Ariel for the next six months.

So tomorrow I am having a surgery to get the lymph node biopsy, a breast biopsy and a port attached. About a 45 minute procedure, but I will be put under. Thanks to my friends Carmela, Kirstin, Andie and Cathy for handling the kids, and taking me to and from the hospital. Then Wednesday I start my drug treatment. Then 3 weeks later the chemo starts. I will update again soon.
love Tricia

March 7th 2011

Hi everyone,

Last Tuesday I had the surgery to have the port put in for the chemo, saves me having to be stuck by lots of needles and trying to find a good vein each time. I also had the sentinel lymph node biopsy done.

The experience of surgery in this hospital was quite surreal. I was taken to the pre-op room which, as is always the case, was absolutely freezing. They had me get undressed and put on the hospital gown. With the gown was a warm fluffy pair of socks. As I put the gown on I noticed that it had these strange pouches built inside it. On the wall next to my bed was some kind of hair dryer like contraption with a long hose on the end of it. Then the nurse came over and attached the hose to a hole in my gown, and lo and behold my gown's "pouches" were suddenly filled with hot air! I blew up like Michelin man, and man it felt sooooo good. There was even a remote to control the temperature!

I was left alone then for a few hours, so I spent the time on my computer surfing the web (free wireless) and chatting on the phone. Eventually the nurse came in to give me my needle in the hand to start the drip. Now any of you who have had surgery before knows how much this needle in the back of the hand hurts. I have particularly challenging veins, so it usually takes several attempts to get the vein (that's why I opted for the port for chemo) which becomes pretty painful for me. This time though, they actually gave me a local first, tiny pin prick and from then on I couldn't feel any of the many attempts she had to make to get that vein hooked up. Wow, why don't they always do it this way? The nurses were so lovely that I really didn't feel anxious when they wheeled me into the O.R. I was introduced to my surgical team, and they hooked my mitchelin man gown up to their own hot air dryer so feeling really comfortable and warm at this point. Then the nurse said "we are going to start your calf massage machine now" I really thought she must be joking, but sure enough this machine started massaging my calf muscles alternating between the two legs. I remember saying "all we need now is the handsome masseur to come in" right as the surgeon Dr Giulliano came into the room. They started me on the happy drug and that is the last thing I remember. Really this felt like a true spa experience right up to the moment they cut me. Good on you St John's Health Center, never want to have surgery anywhere else again.

So today I got the results of the lymph node biopsy, a real biggie in determining if the cancer has spread to the lymph nodes and therefore might have metastasised. The results were "isolated tumor cells" in one node (they removed 3) which is a good result as it means that it doesn't qualify as metastasis and doesn't change the staging of my cancer, which is still stage 2.

The other piece of good news is that I may be able to avoid losing my hair. Mum and Pete (my brother) told me about this thing called cold cap therapy. First I was sceptical but I started researching it online, and came across this news clip from Good Morning America and ABC7. Check it out:
I have been researching this for a few days now and have spoken to many women who used the cold caps and still have all their hair. In fact the lady in the news story has the same kind of cancer as me, same chemo regimen and a year later still has all her hair. So now I am working on getting my oncology hospital to accept the donation of a free freezer to store the caps in. Dealing with a lot of bureaucracy right now, but then they don't know who they're dealing with and how I will wear them down with my persistence and tenacity!

That's all my news for now,
thank you again to all the friends who have taken care of my kids for me after school and for all your emails, it means so much to me to hear your words of support and love. Keep the prayers coming, and would you please include in your prayers my friend Holly who just got diagnosed as well.
love Tricia xx

March 25th 2011

Hi Everyone,

Well, it will probably come as no surprise to those of you who know me well, that I beat the hospital into submission over the freezer for storing the cold caps. I think by the end of my deadline week they were literally saying "OK OK we'll take the freezer just please stop calling and harassing us!" So this big chest freezer is now installed in the chemo room, and sadly I am the only person using it. They are all very curious and sceptical about whether the cold caps will save my hair or not, but I think that once I show up for round 2 with my full head of hair (hair falls out between day 14-21 of first round) which will be 21 days after the first round they will know it really works and start telling people about it.

Very few people have used cold caps in the USA, I think literally a 100 or so, but word is spreading and the cold caps companies are trying to get FDA approval. Unfortunately because it doesn't involve making money for drug companies, things don't get pushed through for approval so quickly, since the drug companies fund the FDA organization. Also, sadly I feel that because this whole profession - the FDA and Oncology - is heavily male dominated, they just don't get the trauma of what it means to lose your hair, especially for women who have long hair. Truly if I had short hair I wouldn't bother with the caps at all, as it is quite a tortuous process!

So I have good news about my cancer. After just 2 weeks of taking my drugs Herceptrin and Tykerb the tumor literally disappeared. This is before any chemo. I had noticed it seemed to be shrinking in the first week, but I don't like poking around the lump too much, but George felt sure it was shrinking. Then at about 12 days from starting the drugs I had a good feel and it was just the size of a pea! Bear in mind that the lump I could feel was about 21/2 inches originally. Then 2 days later I felt again, and I could feel literally nothing! I went back to the breast surgeon to have my final biopsy for the study and he was thrilled and delighted and said it was basically all gone. He managed to find a tiny fragment of cancer tissue for the biopsy, but even that was a challenge for him.

This biopsy was so much less painful than the first one I had (not done by him - but then he is a world renowned in his field). At the end of it I told him "Dr Guilliano, when you grow up you should be a surgeon" We had a really good laugh about that, and then he got teased by the team of Nurses in the room because I asked him to help me do up my bra over my bandages and he kept fumbling around. Apparently doing up bras not his forte.

I had my first round of chemo on Wed 23rd. The cold caps are quite an ordeal, as they have to be changed every 30 minutes and the temp of the caps is -33 degrees celsius. It didn't feel as bad as I thought it would, I think the hardest part is that I couldn't just rest and sleep (the meds made me very drowsy) because of the cap changeovers. But if it saves my hair then it's totally worth the hassles. Poor George though, it's hard work for him and the caps have to be worn for 7-8 hours. I must say though I am quite excited about the prospect of losing the hair on my body, (as is George!)

Now it's day 2 since my chemo and I really feel OK so far. I was expecting to feel some symptoms day 2 but so far it's dinner time and other than a slight sore throat and tiredness, I feel good. I have been resting though, just to be cautious, but I felt well enough to drive and pick up my kids from school. I'm sure by the evening I will start to feel a little weary, but then again that often happens without chemo, 2 young kids will do that to you! LOL

I have been so touched and humbled by the kindness from my local community in Malibu. Someone I don't even know from a mommy and me group I go to set up a website called It invites all the friends in my community to drop off meals for my family. The website's calender allows them to pick the date so there's no overlapping, and it even tells me what each person is cooking for us! It's set up to cover the first few days of each chemo session. Eliza is particularly happy and excited to see what dinner has arrived on our doorstep and she has been trying some new foods and expanding her "sophisticated palate". For out of town friends, it allows them to purchase online gift cards to local restaurants. So a really big thank you to everyone who has been bringing us such delicious meals and for the friends who bought gift cards. I cannot tell you what a relief it is not to think about what I'm cooking for dinner for these next few days.

That's all our news for now, and again I want to thank you all for all your individual messages. Even if I don't have time to respond to everyone it gives me a great lift to know you are rooting for me!

love Tricia

1 comment:

  1. Happy for you and your hair. Life ain't easy but maybe you will have some relief now. Just be ready, though: Something always comes up to bring us down for a period.

    My wife is Marsha.

    Bernard Hudson MD