Chemo Thursday, Treatment #2

It's 8:45 pm and I am feeling very perky right now, unlike this afternoon. My treatment includes other drugs and supplements in addition to the three chemo drugs. Via IV, I receive a shot of Pepcid and a shot of Benadryl. The Benadryl hit me like a brick so after we had lunch, I meditated a bit and dozed for about an hour or so. Lauren and Ann were visiting (each other – since I was out), Thierry went home to chill and work out. We had arrived at the infusion center at 8:20 after eating our power breakfast, saw the doctor around 10:00, and the infusions began around 11:30. I was home by 4:00, which I guess is pretty good. Next week should be even shorter, I will not see the doctor, nor will I get the Avastin – that alone saves me an hour.

Susie (friend and neighbor) reviewed my blood test results with me. She said the liver tests were much improved; however my protein levels are down – so I'm back to 2-3 whey drinks a day, in addition to adding some other sources of protein. The doctor told me today that now is the time to EAT! As I type those words I envision a big round face with mouth open exposing wide large sharks teeth – oh and it has big pointy ears as well. I actually gained another 3 lbs. this week - ate a hamburger (ick - won't do that again too soon) and had lamb one night for dinner!!


I have started to read “Joe Speedboat” by Tommy Wieringa, a Dutchman. Our friend Jeannine from Amsterdam sent it to me – translated into English, of course. It is a good, easy read. Very entertaining. The story of Joe is told by Frankie, who emerges from a coma – unable to walk and talk and has limited use of his limbs. I'll keep you posted.

I received a lovely gift today. Our dear friend Doris is an extremely talented artist. Her paintings are exhibited in Old City, at the shore, in Delaware and places around the Main Line. She has won many awards for her works, and we have several in our home. She painted a lovely picture of Gladiolas in a vase, for me. Like all of her work, it is amazing and I love it.

I am so blessed to be surrounded by such caring, loving people. Life is good, my life is great! Today was a great day.

Life is a Beach

While I am writing, I am receiving my Vitamin C infusion at Jefferson Hospital. It is Wednesday afternoon – still hot and sticky outside – but like a freezer in here. Thierry and I spent the last few days in Rehoboth Beach DE at our friends' house (Susie and Susan kindly offered us their lovely retreat). It was great to have a change of scenery, and to feel normal once again. We ate out the entire time (B, L & D), walked the beach, visited Lewes and took a trolley tour, and shopped at a few of the outlets. We had two great dinners, at Lupo de Mare and Blue Moon and I ate gelato for the first time (and then had it again the next night), it was wonderful! Thierry and I wandered into a candy store that advertized liquorice from different countries – and he found an incredible variety of Dutch drop or liquorice – and of a different variety than they have here at the Reading Terminal Market. He was very happy.

When last I wrote I mentioned that we were having dinner at Lauren and Mike's new house. There were 22, counting the kids – their house can handle the crowd. We had spaghetti and meatballs (that Lauren made), and sausage and peppers that Ed, Mike's brother, made. Joan made garlic bread, Jean made the salad, Ann brought snacks, I made guacamole using habanero's from Ed's garden, mom and I brought dessert – it was quite a party. We decided we'd let Ed into the Taraborelli kitchen – he is a good and adventurous cook!

For years it seemed our home in Gulph Mills was the center of family functions. We were centrally located; had good party space; we invited both sides of the family so no one felt left out; and both Doug and I loved to cook – especially for big crowds. Christmas was always at our house – Christmas Eve for friends and family; Christmas dinner for family. We often had 14 people around the dining room table with more in the kitchen. When we weren't supping with family, we had friends over. We held our annual Hill House party for over 100 people; gourmet New Year's Eve dinners; Memorial Day lobster and seafood party, and father's day barbecues.

When I moved from Gulph Mills and into Philly, I held onto part of the Christmas tradition. Since we moved to Philly, the family seems less interested in coming to our house for dinners, hence Sunday dinner at mom's. Entertaining in general has become less frequent, although Thierry and I love to entertain and share our view of the fireworks on New Year's Eve and around the 4th of July.

At first I was glad to shed some of the entertaining duties, especially when Ann had Christmas Eve at her house. But I have to say you also have to shed some of your pride to be able to step down and pass the baton! I guess it's Lauren and Mike's turn to start new family traditions. I marvel at Lauren's ability to take on a houseful of guests the same weekend she moved to her new home. I know family is extremely important to both her and Mike. I know that they will be able to keep our families together and build a loving community around their home. I hope I can can make a smooth transition into the role of a supporter and cheerleader for Lauren and gracefully take a step back as she takes on her role of keeper of the family traditions.

Today the wigs came in, I think I'll keep both. They are much lighter than the wigs of old, and feel extremely soft considering they are not made with real hair. They should look pretty good once the hairdresser takes a whack at 'em.

Tomorrow is chemo day. I am hoping it will be less toxic than the last, since the dosage will be less (we are starting the weekly treatment regimen). I am prepared – I think; I went to Jean's for healing touch this evening. My friend Ann and Lauren will stop by for a bit – which will give Thierry a break. And, I am taking my own personal chemo bag with me. Ed's wife Patty is a truly talented, creative woman. I understand she paints, but she also sews. She made us all aprons around the holidays – made from patches of different fabrics – they are terrific. When I saw her on Sunday she presented me with a fabric bag (with draw-string shoulder straps). Inside was a coverlet and a head rest. I can't wait until others at the infusion center see this! Patty, you must market these – I'll help.

It has been a good week – I'm looking forward to a good weekend. Keep your fingers crossed!

A Wonderful Weekend

It's Saturday night and I am at my sister Jean's house, relaxing, and where I'm spending the night. We had a wonderful dinner, she performed healing touch on me and we just ate watermelon (Mmmm).

Yesterday Lauren and Mike moved into their new home. I spent the day with her(them), and we were able to put the kitchen together. Jean came up and helped as well, and Mike's dad was there a good part of the day I got home late, but slept well! Today we went back up, moved some more “stuff”. Joan and Jean were there and together we were able to get the kitchen, family room and dining room in order, as well as part of the bar. I think someone said Mike has even more glasses in addition to the several boxes they unpacked (he has quite a collection of beer mugs, glasses, shot glasses, etc.). Lauren and Mike have a beautiful home, with tons of space – and which was designed for parties. I am sure they will keep it full of friends and family. As it goes, we'll all be there for Sunday dinner tomorrow.

It was fun to watch Lauren as she walked around her (their) house, so excited, and looking in the cabinets saying “this is my house, I love my house.” It gives me great joy to see her so happy, and I trust that she and Mike will have a good life together. Lauren has always worked very hard and does so much for me and the rest of her family – she deserves to be ex-tactically happy.

For a good part of these two days I have been able to act normal and like a living person. The days weren't without some discomfort. Again, when I get stressed, I seem to feel more discomfort under my ribs, and toward my back. It seems to happen around the same time every morning, and sometimes in the evening. I tell myself it's my liver healing – I've been doing some serious visualization every day – shrinking and killing the tumors. Dr. Gupta commented that the liver seemed a bit enlarged – which he said was to be expected, and, as Dr. Goldstein said,now is the time to enjoy life and DO things, so I guess I better get started.

BUT, my energy has been pretty high, I guess most of the effects of the chemo are gone. I have even been be-boppin to music in the car; and let me tell you, it felt so good to sing along with Blondie - blaring - at the top of my lungs! I could actually feel the endorphins building. I have been thinking for a while that I need to listen to some good old rock and dance around the house – loosen up. So, one goal for this coming week is to go on I-Tunes and download some good oldies that I can dance to (I'll spare Thierry my singing... well, maybe). Oh, and some ABBA. Actually, I think just getting out and concentrating on some activity – something physical – was good for my psyche.

Now tomorrow, peppers 'n eggs and home fries for breakfast with Mom and Dad, Thierry comes home, then dinner with the family – life doesn't get much better! I've had a couple of great days and look forward to another tomorrow

Suddenly its Thursday

Times flies. A cliche, yes, but sometimes very true. Lately I've been thinking I'd like to sloooow things down - some things. Like when the day is over and I spent half of it being gloomy and short-tempered. Then I perk up and its after dinner and I wish the night wouldn't end. Then there are some events that can't come fast enough - like my next treatment (Ick, I know, but I am anxious to get this show on the road - no matter how shitty I feel). I also think about the break between my treatments - and hoping I'll feel well enough so Thierry and I can go somewhere.

I know, live in the moment - I've been trying to practice this. Especially when I am doing mundane things. Instead of letting my mind wander all over the place -thinking about treatments, vacations, getting a wig - I try to catch myself and think about what I am doing, where I am walking, enjoying the scenery and what's going on around me, using the time to blank out.

Well, about yesterday. We paid a visit to Fox Chase (Philadelphia's cancer center) and I saw a Dr. Gupta (not Sanje) and Dr. Lori Goldstein. They basically confirmed that the treatment I am receiving is the first line of treatment for recurrent BC. Generally, carboplatin is not included, however, they could understand why Dr. Mitchell would add this to my treatment plan - hitting it hard in the beginning. They do not have any trials going on at this time that I could enter. She did tell me about a trial going on now at Penn, which I probably could not enter since I just started treatment. Penn is evaluating PARP inhibitors (I don't know all the details). These are drugs that have shown very promising results in fighting triple negative breast cancers. This is a Phase II trial, where they test the drugs safety and efficacy. The drug would then have to go to Phase III, then onto the FDA (most likely) for approval. This would be something that I would like to plug into - we'll see what happens.

We then went to my sister's house. What an event that turned out to be. Father Gus joined us and Jean had also invited Father Kevin - who wasn't sure he could come. Lauren made a super fruit salad, while Jean prepared chicken, the Spanish way. She lightly floured and browned the chicken (in a little olive oil). I believe she removed the chicken from the pan (Jean you'll have to jump in here). At some point she added tons of garlic, bay leaf and dried red peppers, chicken stock and brandy. She put the chicken back into the pan and let it all cook together. After we finished my sister Ann and her fiance, Juan, came over and joined the table - and then Father Kevin came. Let me tell you, it was all so good there wasn't an ounce of anything left! Not even the sauce. We went through an entire French baguette sopping it all up! We had a good time. I haven't laughed in a while, but did last night.

After dinner, Jean shaved my head. Thierry wanted to take a picture, but I wasn't up for it. I thought it would be easier this time, but it was actually more difficult to deal with - I think that surprised me. I truly believe my ears are bigger now than they were in '05! Maybe it's because I am thinner.... maybe it's because I'm older and they've grown; but I feel like I look like Nosferatu! I guess I'll get used to it - I really don't think I'll have any choice.

I walked a lot today - about 60 city blocks altogether. I looked at wigs at Jeff - they'll give me a free one. If I like either of the 2 I picked out - I'll take it to my hairdresser for a trim. I did wear my new hat today, and really felt pretty fine in it. I went to lunch with my friends and neighbors (Barbara and Faye) - and again laughed and thoroughly enjoyed their company.

Ann came and we worked for a few hours - I cooked dinner - stuffed peppers - and now I am relaxing in front of the TV. Thierry is in Maryland - he took C-Minor down and will return on Sunday. Lauren and Mike move to her their house tomorrow so I'll spend time with them - supervising, of course!

My writing over the next few days may be sporadic, depending on how busy we are and how fast the day goes. And I hope all of the good days, like yesterday and today - and all the partially good days go very slowly!

Touchy Tuesday

My hair started to fall out this morning. I had asked the doctor when to expect it, and she just shook her head. When I started the adriamycin back in '05, they told me 14 days. My treatment was on the 23 of July, 12 days today. Thierry doesn't have the heart to shave my head, so we'll go tomorrow to my sister's after our visit to Fox Chase, and like the last time, she'll do the deed.

Admittedly, it dragged my mood down a bit. I knew it would happen. I just pray my eyebrows stay on – they did the last time. Actually, what bothered me most the last time was losing my eyelashes. Maybe this time I'll buy some false ones! They look pretty good today – very natural. I had little individual false ones on at Lauren's wedding. This time I'll go for the whole set. I pulled my wig out of the closet to find the back looks like it was singed?? Guess I'll have to get out quickly to find another. Maybe I'll find one with gray in it – or maybe I'll go red.

I consulted my oracle this morning and pulled three Runes – before my shower and mass of hair appeared in my hands. The instructions say you are to pose an issue, not ask a question. My issue was this: I have a difficult journey ahead (will I be able to deal with it). The Runes I pulled were similar to those I pulled before: life goes through cycles, one phase of life closes and another opens; when in deep water, become a diver (I think that is a good one); there are limitations we put on ourselves; now is the time to mend and restore myself; now is the time for regeneration – down to the cellular level. I am not sure how one goes about this internalizing and soul searching, but I am leaving myself open to whatever!

We had an appointment with the genetic testing people today. In 2005 I was tested for BRCA1 and BRCA2 (the breast/ovarian cancer genes that they had identified at that time). The results were negative. Apparently in recent years the test has been expanded to identify other areas in the DNA that increases the accuracy of the test from 90% to 98%. There are currently some Phase II drug trials in progress that target cancers that are BRCA1 receptive which have had very positive results. But the nurse was having difficulty drawing blood, so I suggested we have the blood drawn at the oncologist office when I go for my treatment next week. She readily agreed. Once tested – it will take about 3 weeks to get the results. My clock is ticking....

I have to evaluate whether I should continue with the Vitamin-C infusions. They take 4 hours. If I go twice a week, that is8 hours plus 8 when I go for chemo, or 16 hours a week spent inside, plugged into an IV. I am told that the Vit-C should give me more energy and help boost my immune system. I don't detect an increase in energy – and sometimes the infusions make me feel light-headed. The nurses tell me to graze (snack frequently) while I am being infused – which I did today. It helped a bit. I may continue until my cycle of chemo is completed and I am retested. I am still on the fence here.

The moon is beautiful this evening – 99% full! It is a pinkish color, and looks incredible against its deep bluish background.

This morining I was very blue and apprehensive. Today was not an easy day – but still a good one.

All Saints Sunday

This morning we went to Mass at St. Peter's Church in Philadelphia. The we being me, my two sisters and friend Ann. The shrine of St. John Neumann is located at St. Peter's. In my purse were holy cards, one of St. Peregrine that was given to my by Juan. This was passed along to him by a co-worker who had cancer that went into remission. Juan just finished treatments and surgery for stomach cancer. Apparently Juan was the fourth recipient of the card. The other is a card that our friend, Mariela, Fed-X'd from Columbia. It is of the Holy Infant - whose shrine is located in her hometown. I had a St. Agatha medal around my neck; however I had left my John Neumann relic at home (I had been moving him from one pants pocket to another - he is a little big). I was pretty well armed.

Father Kevin started his sermon by noting how the crowds were anxious for more miracles, and were hesitant to commit their faith until they saw results. His sermon addressed a lot more, but I have to admit I felt somewhat hypocritical being there - having not been in a church with any regularity - and very little over the last few years. After mass, when Father Kevin gave me a blessing, I choked out my feelings (it was a very emotional moment). He assured me that God was not offended in the least by my presence and prayers for health. He commented that God is there for those who are in need and in pain.

When we left I felt less hypocritical, and have decided to focus my prayers on God (the ultimate being, energy, force, power), on all the spirits, saints, angels, energies, forces that are out there, including those that reside within me. I am starting to believe that I am worthy.

I should tell you that I started the day consulting with my personal oracle by randomly selecting Runes from a sack, and interpreting the symbols in "The Book of Runes: A Handbook for the Use of an Ancient Oracle: The Viking Runes".

"Runes are an ancient Germanic alphabet, used for writing, divination and magic. They were used throughout northern Europe, Scandinavia, the British Isles, and Iceland from about 100 B.C.E. to 1600 C.E. Runic inscriptions of great age have even been found in North America, supporting stories that the Vikings arrived in the Americas long before Columbus." (taken from http://www.sunnyway.com/runes/intro.html)

Runes are an oracle from which one seeks advice. What I learned from the Internet is that you are supposed to detail your current circumstances and then ask a specific question. Rune readings are somewhat obscure, and supposedly hint toward answers. I'll have to do a bit more research on Runes and their interpretation, but my first pull brought me the following:

Warrior Energy (looks like an arrow): Journey, Communication, Union, Reunion (Looks like and R): and a Blank - representing the beginning and the end (this one scared me a little). I am not sure what the lessons here are - but in short - they tell me to look within to delve down to the foundations of my life; that I am on a journey of self healing, change and union; and that obstacles can be gateways that lead to new beginnings.

It is now Monday afternoon and I am just finishing yesterday's blog. The day was a busy one. The church group went to breakfast and watched as a wild storm swept through the city. TD and I worked out at the gym, albeit briefly, then went to mom's for dinner. Joan made spaghetti and shrimp - it was terrific. We played a three-sided domino-type game Jean brought back from Tenerife (using the German rules), and got home later than usual.

I went for another Vitamin C infusion today. Also received a call from my oncologist who assured me the treatment was "an accepted treatment protocol" and necessary due to obstacles thrown into the fray by the insurance company. We leave in 10 minutes to have dinner at our friend Jeanne's house - where I know we'll laugh a lot as well as have a great meal!

Thanks to everyone who commented on my blog yesterday! I hope you all had an opportunity to read through them - there are some great thoughts there.

Yesterday and today were terrific days!

Soul Searching Saturday

First I have to say how thrilled I am that we can post pictures. We'll see how this works - this being the first, but blogger makes it easy to do with Picasa (all google products). This is a picture of Hermione, the orchid that our neighbor Suzie brought to us the other day. This is the first house plant (other than maybe a poinsettia) that we have had since we moved to Philadelphia. It is difficult to maintain houseplants when you're not home very often. We have tried some plants on the balcony, but alas, they don't last very long. Hermione puts a smile on my face everyday. (Photography by Thierry)

Today started with a bang! While Thierry was showering, I was cleaning the guest bathroom! We had breakfast and I left a little after 10 to go to my sister's for a healing touch session. It was great to spend time with her. We talked a bit about god and an afterlife. This is something I have been thinking about a lot lately - but I've always thought about these things.

Being raised Catholic, I never had any connection or affinity to the church or the religion. I won't go into the reasons, it just never stuck - it never felt comforting to me, like a place I could go to for peace or answers. We spent time in the Lutheran Church where at least I felt a connection to a community. The Lutheran's are very accepting of a person's beliefs. What are mine? I guess I believe in a higher presence or being. I don't believe in heaven or hell, but want to believe that things just don't end when we die; that the spirit lives on - and in a way I can see the possibility of reincarnation.

One of the reasons I can believe in reincarnation is because on several occasions I have met people where there has been such a strong positive or negative reaction within minutes of our meeting. A shake of the hand, a hug, can send such a surge of energy or repulsion that it causes you to pause, maybe even shiver and ask what was that about!? I remember the first time I met Doug, I had this sensation that I had known him before (altho hadn't ever seen him before) - and ended up marrying him. I feel an unusual connection with my daughter - this may be a normal mother/daughter thing - but the link is so strong I have to wonder. I feel a strong link to my friend Barbara, who I've known almost my whole life - and no matter how far apart we are, we still stay connected. This has happened to me so often in my life, with people who have played such a pivotal role in my growth and development.

When Jean was performing healing touch on me today I felt another very strong connection. I felt like she was actually transferring energy, healing energy to me. But more than that I felt at peace being with her and found great comfort in the realization that I was with someone that I had known for a very long time - beyond this lifetime.

I told Jean that I was concerned that my attitude (in the past) had an impact on my health. That being a fatalist (always thinking in the back of my mind since 05 that this may get me), rather than someone who deeply, inherently believed that they could overcome a disease such as this, has had a hand in this. Now, if someone said to me, I am sick because it is God's will I would say - I really don't think God had anything to do with it.

I really don't want to be one of those people - who blames a god, themselves or some other bizarre factor for their illness or life burden. I will be spending a lot of time soul searching and working on my mental - as well as spiritual health.

TD and I are going to escape for a few hours and see the new Harry Potter movie. Tomorrow I'll go to St. Peter's Shrine with Jean and my friend Ann, and try pick up good energy from the various forces at work there.

Today continues to be a very good day, and I look forward to what awaits me tomorrow.

PS: I'd love to know where you find comfort.