Trust

I get a message almost every day from Neale Donald Walsh, author of Conversations with God that starts with....I believe God wants you to know... and it's amazing how many times it is completely appropriate for my day. Today it said...

On this day of your life, Kathi, I believe God wants you to know...
...that the time has come to get clear about who you are and what you choose.

There come moments in every person's life when a decision is necessary. A big decision. A major choice.Such a time is now. What you get to choose today is who you are and who you choose to be, and what you wish to experience in your life. Remember, not to decide is to decide.

 

And so I believe today is the day to make my choice about chemo. Yesterday, I went to see Wayne Hogan, my chiropractor and kenesiologist, who I have known for years. His wife, a former classmate of mine, urged me to talk to him about some information he had regarding alternatives for chemo. Aside from him working on my shoulder which has been bothering me for 2 months now, he was very helpful. He recommended Essaic Tea, which I had heard of some time ago as having great success with cancer cures in Canada. Rene Caisse, a nurse, who found this Indian remedy had been treating people for over 8 years quite successfully, until she was shut down by the powers that be. Even though she didn't even charge for the tea. When I googled the tea, just to refamiliarize myself with it before taking it, I found a link to this movie http://www.burzynskimovie.com/ I had heard of this man, and his story, but not in such detail. I found a place online where I could view the whole movie (it's also on netflix) and I could feel the balance tipping in my decision for chemo. I know that chemo is a life-saving therapy for many, but I also believe it is prescribed for many many who will not benefit from it. They say to follow the money if you want to know where the power is, and big pharma is one of the biggest. I simply cannot trust the infuence they have on the medical community. I urge you all to view this movie. I hate to encourage conspiracy theories, but there is definately value in seeking the truth.  So it seems today, that I will put my trust instead in my faith that God will lead me to the right alternative modalities to ensure the cancer will not return. I do have one more appointment today with Dr Suskin, and I will listen to what he has to say, but after watching this movie, he will have some extensive convincing to do. Bottom line is that for over a month, I have tried and tried to convince myself that chemo was necessary, but my heart just hasn't bought it. I have to be true to myself. Bob is suggesting that I sit with this decision for a few days, and be sure, and I will, but I do feel a sense of relief in feeling that I know what feels "right" for me.

 

In the meantime, my breast is less red today, so that is a good sign, I will still head to Boston tomorrow for the dr. to check it out, but hopefully, that will turn out ok. I am SOOOOOO very grateful to all of you who have been so supportive of this conflict I have with chemo, and my beliefs about alternative therapies. You know you are loved when people trust you to make the right decision for yourself.

I Like the Color Red but........

Today was a workday, though I don't think I made any progress with sales. Maybe tomorrow some more things will fall together. My friend Pam stopped by for lunch, and we had a nice chat. Her husband Charlie, my pastor and dear friend passed away almost 2 years ago from bile duct cancer, and got his treatment at Mass General, which certainly influenced my decision to go there. We talked again today about how different their experience was with chemo there. They had the same nurse every time, and she became like a family member. They still remain in touch. 

So my girl seemed to be less red this morning, but tonight, it seems to till be the same. So confused about this. I can't imagine how it could be an infection, yet I have no other explanation why it would be red. Two days on the keflex, so we'll see if tomorrow brings any more change. I never even called the doctor today, he wanted me to go to Boston tomorrow, but with the storm, I'm not going to do that. I also have an appt. tomorrow with Wayne, and another one Wed. w/ the other chemo doc. So I'll call tomorrow and set an appt. for Thurs. I'm really hoping it will be gone by then, and I won't have to go. Ugh.

Had a nice conversation with Joe (qigong) on fb. And he asked me if I was doing my qigong exercises. I had to admit that I wasn't doing them as much as I should. I've spent so much time trying to figure out if I should do chemo that I'm not doing the things I think will be most helpful. What's wrong with that picture? Time to be more disciplined. If I do end up doing alternative instead of chemo, I'll have to be careful not to become complacent.

till tomorrow......

Sexting!

I had a wonderful time last night with Larry and Joe sharing our cancer stories. They both had blood cancers so our stories are a bit different, but the feelings and concerns we all go through are pretty much the same. Larry had a really rough time, but is now 11 years out, and doing quite well. He runs his own music store in Cobleskill, and because he was sick for so long, he had issues with bills piling up. All the musicians he knew organized a fundraiser to help him pay all his medical bills. It was SO sweet when he asked us if either of us were having problems in that regard, and offered to do that for us. Luckily, we are both doing ok, but the thought that someone we haven't seen in 40 years (we just reunited at a reunion in April and have been fb friends since then) touched my heart. It was interesting to see that our thoughts were very similar in how it changed our lives - none of us felt like a big victim - that this was just something we had to deal with and get through. They are both really beautiful people, and we decided to get together again. Sometimes, I almost feel guilty that so far, this has been almost a positive experience - I have felt so much love from so many people, and had such beautiful exchanges. I know cancer isn't always a walk in the park, and many people suffer a great deal. I feel very blessed.

That said, I have an area on my new girl that is red. At first I thought it was just irritation from my bra, but after 3 days, it's still there, and I finally called my friend Cindy who's a nurse to come over and take a look at it. She said it did feel warmer than the rest of the breast, and that it would be best to get it checked out. Of course, with Frankenstorm coming, it isn't the right time to go running to Boston to have the doc take a look at it. Reluctantly, I did call him. I was waiting for a lecture that the accupuncture I had done might have caused an infection LOL!!! He is totally over the top about concern for infection, but I guess if you're doing things like hand transplants, that's a pretty big issue. Anyway, I had to take photos of my new girl, and send them on my smart phone - Hope I don't get accused of sexting LOL!!! I'm sure these photos wouldn't be exciting anyone though!!! After reviewing, he thought it still looked stable, but advised me to stop wearing a bra, to take the remaining keflex I had leftover from surgery, and to try to get out there to see him on Tues. I'm kind of thinking it was caused by the pulling of the tape (which I did remove last night) so we'll see if that helps. So we'll see what happens with Sandy, and if travel on Tues is possible. In the meantime, I'm sending my new girl prayers and good healing energy.

Beautiful People

I had the most lovely lunch yesterday with former classmates Joyce Peluso and Annemarie Boucher. Joyce was visiting from CA, and had BC back in 2001. Annemarie thought it would be good for us to compare notes, especially since Joyce was also a nurse. While we were there, their aunt stopped in who also had BC 5 years ago. Joyce also had 2 sisters with BC, and 2 cousins. Annemarie's mother also had BC many years ago, and survived for many years after. What made it particularly interesting was that Joyce, although she had embraced chemo the first time around, and did a very powerful recipe, 3 years ago, when she was diagnosed with a very rare urinary cancer, she opted out of the suggested protocol of extreme surgery and chemo. She embraces both western and alternative therapies, actually, is even considering going into some form of alternative therapy as a practitioner. But she said that somehow, she just knew the first time she was supposed to do the chemo, and the second time that she wasn't. She maintains that following your gut is the most important cancer protocol. When she said that, it was like this flash came over me. Never at any point during this ordeal did I feel "right" about chemo. I'm trying to listen to what the experts have to say, and what the statistics say - but my gut never seems to agree.

I'm sure those reading this blog are probably sick of hearing me vascillate between doing and not doing chemo, and let me tell you - so am I!!! But the hardest thing is to figure out when you are responding out of fear, and when are you resonding out of faith and trust? And who and what is it I DO trust? It's not easy. I seem more on the fence than ever, with strong arguments on both sides. The saga continues!!

In the meantime, it was so great to chat with these beautiful women, and share our stories, and even chat about a few old times back at MHS. Tonight, I'll have dinner with two other former classmates, Larry Mazza and Joe Bango. Larry had acute leukemia about 8 years ago, and Joe is going through cancer now. We've had some interesting conversations on fb, and decided to get together. I can't tell you how blessed I feel to share these experiences. It's one thing to sit and chat about the 60's and what we did in school, but quite another to talk about cancer. It requires a certain depth and courage to lay your story out and share it with others. I know that so many people consider people with cancer as being vulnerable, but I have to say I think it is the opposite. You don't fret the small stuff when you have cancer, even things like losing breasts and hair seem quite small, and life suddenly becomes about the important things -  like people, family, laughing and loving one another. 

Cheers!

Every time I've gone to Boston, I try to take in a little more of the city. Yesterday, Sandy and I went to see the galleries on Newbury St. That was great fun. We had a nice leisurely lunch at Davios on Arlington St, and then went back to see some more galleries. By the time we were done, it was rush hour, and clearly not a good time to get a taxi back to Mass General, so we took a leisurely stroll instead. On the way, we walked past the original Cheers bar, and decided to stop in for a drink.(see photos below) We sat at Norm's official seat, and had a great conversation with a young couple. He was just named one of the top 5 naval somethings (sorry, I don't remember the term) in the country and was celebrating. We had a great day, and were able to catch up on a lot of gallery and personal chatting on the way out and back.

Appointment with the doctor went well, though he wanted me to leave the tape on for another week or so (ugh). We talked about tweaking the other girl to match. He will actually take part of the other areola, and nipple to create a new one, so no tattoo will be required. That will be an easy surgery, and the end of the whole ordeal.

As for the chemo debate, I continue to work on an answer. Today, I meet with a former classmate who had BC for lunch who's visiting from CA. and tomorrow, with two former classmates, one who had cancer 8 years ago, and one who has it now. Each person has a different perspective given their particular circumstances. I can certainly understand that chemo is the best answer for most people. I have spent the past 25 years investigating and researching alternative health care, and as a result, already have this huge body of information I can turn to for other solutions. If you are investigating aternative therapies for the first time when you are diagnosed with cancer, it would be way too overwhelming. I think there are some people who think I am wanting to wimp out on chemo, but believe me that isn't the case. I have no problem with losing my hair or getting sick on chemo. My concerns are the long term effects, and if they're worth the immediate benefit. Alternative methods for me would mean completely changing my diet for the rest of my life, diligently pursuing both spiritual and physical methods that would keep my body and immune system strong enough to beat any new cancer cells, and completely trusting that these things will keep the cancer at bay.  It certainly isn't the "easy" way out. Neither will give me a guarantee, and I truly believe that when my work here is done, THAT will detemine when I leave this earth - not whether or not I have cancer or not. So whatever side I choose, it will be with the trust that everything will turn out exactly as it should.  Thank you all for all the love and support. I have always said I was the richest person I know, because I have so many beautiful people in my life, but at times like this, to have them all here at the same time, is an amazing feeling. I am truly blessed.

 

Compromise

Well, my appt. with Dr Schlossberg today went well. He was very nice - great energy, and was certainly respectful of my opinions of alternative therapies. He did, of course, put in another plug for the aggressive nature of triple negative BC. He did however, offer another chemo regime that is far less toxic than the one prescribed in MA. He would still recommend that one, but given my concerns for long term issues like heart problems, leukemia and liver damage, this other regime (TC) is considered milder. Also, because the Taxane can be given at the same time, it would only be 4 treatments, one every 3 weeks, so I would also be done sooner. The other one would be 4 sessions of AC and 4 sessions of T, every other week for a total of 4 months. I started researching this new recipe tonight, but haven't learned too much yet. It does seem like a reasonable compromise.  I'm anxious to see what the other doc has to say next Wed.
In the meantime, my friend Nancy called and urged me to talk to her husband Wayne, who is also my chiropractor, as he is treating several women with breast cancer and has lots of info about chemo. I'm sure none of it is good - but it will be very helpful to hear what he has to say. Ironically, just a few minutes before I got her email, Krysta was urging me to go to Wayne to take care of an annoying shoulder problem I've been having - Ok, I get the nudge!!! Appointment is in the works!!
Off to Boston tomorrow, and hoping the tape will finally come off my new girl. Looking forward to going gallery hopping with Sandy after. I've actually never been to Newbury St. I am getting to be quite familiar with Boston though - love the city.
till tomorrow....k

52% vs. 48%

Oh My! So I went yesterday to get the book Knockout by Suzanne Somers, and it is certainly full of interesting information. A great deal of it is very negative toward western medicine's habits with chemo. She interviews several alternative and complimentary physicians who deal with cancer (not just breast cancer). Each of them has different methods they use, but all are having a great deal of success, and this is usually with terminal patients, as often, it's only when they don't have success with Western medicine that people turn to alternatives. The problem is, each of these methods has an expense that is not covered by insurance. Also included was an interview with Dr. Moss, who I had gotten some information from previously. He was actually fired from Sloan Kettering because he refused to say that Laetrile was not effective (when studies had shown that it was). He went off to do research on his own, and has since written books about the negative aspects of the cancer industry. He does, however say, that while 70% of the chemo prescribed is either ineffective or unnecessary, in my particular case of triple negative breast cancer, it has shown positive results.  I have never struggled with any decision as much as this. I feel I am perhaps only 52% in favor of doing chemo - and 48% NOT in favor. That is not a comfortable margin.

So today, I have an appt. with Dr. Schlossberg in Rexford at 3pm. I am really hoping he can help me to clarify all of these statistics. It would seem to me that if no lymph nodes were involved, I should be cancer free, and able to take care of any microscopic remains with alternative therapies. But clearly, that's not what theyre suggesting. However, the chemo regime they will likely recommend has definate concerns in terms of heart damage, getting leukemia in the future, and other concerns. I would really like it if they told me that I could do a milder regime, in conjunction with alternative therapies. I'm all for compromise!!! Thank God Bob is going with me today - he has been SO helpful in taking notes at dr. appointments, and helping me to process what they say. It's always good to have someone to say "Did he say what I think he said?" to!!!

In the meantime, while I'm sitting here with piles of research and test reports on my lap, Dr. Sunkin's office called (he's the second dr. I am consulting with) to say they had to push my Nov. 5th appt. out further. Ugh!!!! I expressed my concern to the nurse who called saying that maybe this was a sign I'm not supposed to even do chemo. She could sense my frustration, and when I mentioned that I was referred by Heather Ferris - she said she'd go back and see if the dr. could make an exception and see me sooner. She ended up calling me back with an appt. on Halloween, even sooner than my first appt. So that is good. Maybe I should dress up like my friend John used to for Halloween (he was a PA at St. Peter's) - in a lab coat, with fangs, and an IV filled with bloody mary's!!!!

So at least it would seem that by Halloween I'll have chosen a chemo doc. and we can get this show on the road. Prayers please for clarity on this issue. I keep trying to slow down, and listen to that still small voice of God telling me what I should do - but I still haven't heard it.

TGFM (thank God for Mucinex)

After digging deep in my medicine chest, I finally found some Mucinex, which helped a lot to bring some comfort late last evening. and helped me to get going this morning. It was a slow start, but I did manage to get into work for a 1/2 day, and get my yearbooks out. It was good to see everyone. Surprisingly, everyone liked my short hair. One of my friends daughters had BC last year, and she had Dr. Sunkin for a chemo oncologist, and spoke highly of him. One of the girls who is closest to our new president assured me that if I needed to work from home a little bit longer to be sure to ask. It was nice to hear that. I have NO idea how I'll do with chemo, so this could be the hard part for me. Another friend told me about a Suzanne Sommers book, Knockout, about curing cancer with alternative therapies. I'm going to call the library tonight to see if they have it in. She's pretty cutting edge when it comes to healthcare - even more extreme than I, but it will be interesting to hear what she has to say. I know there are holistic oncologists out there, but there aren't any in my area, and again, they're usually not covered by insurance. I'll keep opening every door I can until I get right down to sitting in that chemo chair!!!

I was pretty tired by the time I was ready to leave work, but I even had enough steam to hit the market on the way home. I'm ready for this cold to go away - it's draining me!

My friend Sandy (owner of the gallery I'm in) is going to Boston with me on Thursday. We're planning on checking out the galleries on Newbury St. after my appointment. This will be great, as I won't have to drive both ways in one day, or pay for a room. We'll have a great time, and have a chance to discuss marketing strategies for the gallery for the holidays.

Germ Warfare - Achoo!!!!

Well, feeling really crappy today - this has blown into a full blown cold - huge swollen glands and sore throat. I did feel a wee bit better midday yesterday, and went out and ran some errands. Left when it was sunny - thinking it would do me good to get some vitamin D, and as soon as we got out there - it started pouring!!! Last night I felt worse, and this morning-  the same. UGH! I sure hope I feel better by tomorrow, as I'm supposed to go in to work. Not sure that's going to happen. I may have to work from home again, and wait to get the Yearbooks out. I'm concerned about going to the chemo dr. on Wed. I'll probably have to wear a mask. I don't know how I'm going to manage to not get sick all the time I'm on chemo. Clearly, my immune system is still not quite up to par, and with Kenzie in and out - she will be bringing in all the germs from school. Need to do some research on vitamins to help ensure I can stay healthy.

One of my errands yesterday was to buy some yarn so I can make a baby sweater for my expected grandchild. I'll definately have to be sure to wash it before I give it to them though - as i don't want to share the germs!!!

Busy Week Ahead

I did feel better during the day, but now that evening has come, I'm dragging again. I'm really hoping I'll feel better tomorrow. Bob decided to come over tonight after he helps out at movie night at church - so that was really sweet. Tomorrow, he has a fundraiser at Browns Brewing for the Rensselaer Land Trust, so we were supposed to sell tshirts and tickets in the afternoon. I offered to help, but not sure I'll be able to. At 5pm I have a long distance board meeting for the Whale Center of New England, so I could go for a couple of hours, then come home for the board meeting. We'll see. Today I got precious little done. A couple of loads of laundry, and went through some paperwork, and that's about it. But I have to remember that my number one job right now is healing, so I'll try not to feel guilty. This week will be a busy one - so I really need to feel better. I have to go into work on Monday, I have an appt for a recall on my car on Tues, so I'll bring my computer and work from there while they fix it. Wed. I have an appt. with Dr. Schlossberg, and Thursday I drive to Boston for another appt. with the plastic surgeon. Still trying to figure out if I can drive out and back the same day, or if I need to either stay over in Boston, or go up to Karen's for an overnight. It might be fun to stay at the MGH Beacon house (it's cheap) and spend the afternoon at the Boston Museum of Fine Arts.....or hit some galleries.

Yucky Rainy Day

Well, feeling like crap today - was up all night with a bad sore throat - feels like I'm swallowing knives. I only hope I'm not getting mono from my daughter. One would think I would have gotten it by now, but I was on keflex until last week, so it's possible that hed it at bay. Either way, I'm going to lay low, and take care of myself. Bob says I should gargle with salt water - good advice. I was going into work today, and to help Bob with movie night at his church tonight, but that's not going to happen. Maybe I'll feel well enough to get some painting done today though. We'll see. Maybe it's a good day to go through all the medical bills, although that will be depressing! How about MASH reruns and tea and honey....that sounds much better!

Practicing

I didn't feel all that well today - just feel like I'm fighting a bug. Still have swollen glands, and just draggin a bit. So I laid low today. I'm supposed to go into work tomorrow to send out the Yearbooks, but we'll see how I feel. I am a lot more mindful to taking care of myself. I talked to a friend who just went back to work, and she's pretty tired. It ocurred to me that the reason I've been feeling so well is that I haven't tried to run back and forth to work. I think that was really good for me. Hopefully, I'll be able to fight this bug and stay healthy enough to begin chemo. It also ocurred to me that because I've felt pretty good - I just went right back to normal again. If what I believe about cancer is true, that it's meant to be transformational, I'm not doing very well. What have I done to decrease stress and increase joy? Not much. Certainly this was a wake up call to make each day count, and if I spend each day just taking care of business, just like before, then what have I gained. So tomorrow, I'm going to try to be more aware.  I'm approaching chemo doctors by saying I'm willing to make a lot of changes on my end, and to work hard on alternative methods of healing - but I'd better get back to practicing what I preach.

Perspective is Everything

Had a lovely dinner tonight with Elizabeth VanNorden and Jenn Salm. Jenn is a young woman who has incurable cancer. She has been receiving chemo since 2008. Her father died of colon cancer when she was young, and her mother had breast cancer in 2003. Wow - I just can't imagine what it would be like to know that for the rest of your life you had to do chemo. Not surprisingly, she has a different view of chemo than I do, for it is what is keeping her alive. She has a rare cancer - can't even say the name, where she had tumors all over. She's on a new drug since Jan, and hasn't been rescanned since, so she has no idea how successful it is. She is a strong and beautiful woman, even with her bald head. She is the one who recommended Dr. Schlossberg who I will see on the 24th. She works at Albany Med in the organ donor dept. and regularly flies to other locations to pick up organs from other hospitals. She is amazing. We talked about trust and faith - and how to tell when you know something is "right" for you or not. Healthcare choices change dramatically with your perspective - and clearly she had a pretty deep perspective. I have certainly seen cancer from a lot of different perspectives.....but since my diagnosis, I have to say, I've learned a lot. A great big thank you to Jenn and Elizabeth for arranging the meeting.

Two appointments! Yeay!

Well today I finally got my 27 pages of files from Boston successfuly faxed (after 3 tries)  to two chemo doctors, and got my second appt. It isn't until Nov. 5th though. Tonight, I'm meeting my friend Elizabeth, and her friend Jenn. Jenn works as a nurse at Albany Medical, and recommended Dr. Schlossberg,  the dr. I'm seeing on the 24th who she apparently knows quite well. Jenn has a rare cancer, and requires continued chemo, but also has a very spiritual approach to life, so Elizabeth thought she would be a great one to discuss East meets West. I'm really looking forward to meeting her. I got yet another recommendation from a former co-worker on fb today as well. Everyone has been SO kind and generous with their assistance. No one has suggested that i was being too picky, which was nice. I know that not everyone spends 3 weeks trying to find a doctor, but I do have to be true to myself. If we'll go to 10 different stores to find the right shoes - why would we just take the first dr. that comes along for something like this?

I woke up this morning with swollen glands, and not feeling great. I worked about half a day, and then called it a day. I'll go in to the office on Friday to send out the Convention Yearbooks, and consider it one day. I'm a little concerned now that I'll have to go back to working in the office before my chemo starts. I was hoping to get one or two treatments under my belt before I went back, but unless things move very quickly, that may not be the case. I have no idea how my body will react to chemo - but I've always been very sensitive to meds, so I am concerned. That said - I fully expected surgery and losing my breast would be difficult, and it wasn't, so I remain hopeful.

Off to dinner at Macaroni Grill. :-)

One out of three!

Despite my suspicions that the western medicine world is chomping at the bit to give me poison chemo, that doesn't seem to be the case!!! I've been now two weeks trying to get appointments and just got my first one this morning. I had narrowed my list of options down to three doctors. Dr. Sutkin, Dr. Collea and Dr Schlossberg. Dr. Sutkin's office required getting certain information from Boston before giving me an appt. and apparently, that hasn't happened yet. Dr. Collea doesn't have an appt. till mid November. I thought that might be a bit late to get started. So I called Dr. Schlossberg's office, and I now have an appointment on the 24th. I also have to fax the 27 pages of medical history from Mass General to them.

I'm working from home today - and very grateful to have that opportunity. In between, I'm able to throw in a load of laundry, and put some sausage tortellini stoup in the crockpot for tonight's dinner. By not having to do the running to Albany and back, I'm able to spread my energy out nicely, and get most things done. I'm still behind - haven't even sent out thank you notes yet - but I'm starting to catch up. Since most of my job is done by phone and internet anyway - it really was an easy solution. My kitties, Marcello and Minnie Pearl are very happy to have me home! My long time friends Joan and John Bradley are visiting the area, and coming over for dinner tonight I haven't seen Joan in years - and John only briefly at his dad's wake couple years ago.  It will be so nice to see them and catch up on all those years.

My chemo schizophrenia from yesterday seems to have subsided, and I landed at a place where I will do chemo, but I'll trust God to help me use alternative therapies to prevent the long term damage it can do.  Not sure if I mentioned it before, but I've been asked to do the message at a Healing service at church on the 29th, as the theme is Breast Cancer. I've been working on the message, and it still seems a bit long - have to try to cut some of it. I do find that writing this blog, as well as that message, helps me to process my own thoughts and feelings better.

Schizophrenia

In a conversation this weekend, it ocurred to me that chemo drugs may be made from heavy metals. I've had experience with that in the past, and that could give me new insight into dealing with chemo. My husband, and my son had suffered from depression due to very high levels of copper. When my son was a little boy - he even said he didn't want to live. When he was 11, they tried to tell me he had a siezure disorder, ADD, and even possibly schizophrenia. Just instinctively knowing this wasn't right forced me to dig in and find solutions for myself. It turned out that just like his father, he had this copper toxicity, and after several months of a chelation therapy, which was basically taking a lot of specific vitamins that would bind to the copper and flush it out of his system, Kory changed from a morose and sad little boy to a happy and playful kid. I often wonder what it would have been like if I had instead given him all the meds they recommended. He has been fine ever since that time, with no further need for treatment. I have to say, it's this experience that led me to put such faith in alternative therapies.

So when I did look up the chemo drugs, I found that some were heavy metals, but most were not. Unfortunately, every time I dig a little deeper, I find more questions than answers. I still am questioning if I'm making the right decision going with chemo. For some reason, it still just doesn't feel right. But neither does sitting with the apprehension and possibility of the cancer returning. Such a dilemna. I'm just not sure if I need to trust my instincts more - or trust that God is providing healing through the chemo. I seem to be right on the fence with this issue. Talk about schizophrenic - one day I'm certain chemo is right - the next I'm doubting it!!! Without a doubt, the hardest part of having breast cancer is making the right choices.

In the meantime, I found out that one of the doctors is waiting for info from Boston before they can give me an appt. and the other, i still haven't heard from. Hmmmmmm I guess everything will happen when it's supposed to.

Today, I'm working from home, and grateful for the opportunity to do that, as I can get so much more done with my energy than if I were driving back and forth to work in the rat race. I do find that I am very careful where I spend my energy. When I start to feeling like i'm getting busy without good reason, I am consciously slowing back down again. I want to keep myself in this good healing mode so the chemo doesn't knock me on my butt!

Seven Swans a Swimming!

Back home again after another great trip to Rockport. Today was rainy and cold, so I decided to head home early. But yesterday was great. All kind of music up and down the streets, great food, and great people. I caught up with my friend Walter who has been dealing with terminal cancer for a few years now. He looked great, and is feeling well. At my recommendation, he went to see Joe, my qigong practitioner. He was amazed at how powerful the session was, saying, he felt like he had never in his life taken in a breath that deep. I could definately relate. Karen, a passionate vegan is always pushing me to eat better. She made a great vegan soup that I actually liked with swiss chard, leeks, potatoes garlic and beans. I'll add that to my new, healthier recipes. She's constantly warning me about genetically engineered foods, meats and dairy, and wanting me to go Vegan. When I talked to Darcy about whether or not I should go back on my macrobiotic diet, she said I should wait till after chemo - as during chemo, most likely I'll have to eat whatever I can keep down, and it may or may not be healthy food.

Last night, we had a great time at Guiseppe's. It was not as crowded as usual, and at the end of the night, kind of like a private party with friends - It was easy to sing a few songs, as the usual fabulous local singers weren't there - so it felt safe. Towards the end of the evening, my friend Henry, also a cancer survivor, showed up, and we had a nice chat. I met him years ago in a restaurant with his partner, when his son was dying of cancer. We had a really beautiful conversation and connection, and we prayed for his son at church for some time. I didn't see him again till years later in Guiseppe's, and though I didn't recognize him, he knew we had met. When he mentioned his son, it clicked. His son passed 8 months after I first met him. He has since started a foundation in his name http://braincandyproject.org/. Time and time again, I see people whose lives cancer has touched that are doing great things, with great energy. It confirms my belief that the purpose of cancer is transformation.

Today on my way out of town, I came across this beautiful sight - seven swans a swimming. I just love Rockport!

$9.00 Lobsters

Yesterday I worked from home, and left for Rockport later in the afternoon. Arrived at Karen's just in time to have some great soup, and watch a movie, and hit the sack. This morning, I had a Qigong appointment with Joe - which was wonderful as always. We had a great discussion about my "anger" towards chemo and the pharmaceutical gods. He's saying that whether or not I do chemo isn't important, but not to be angry or have resentment is. I know he's right. If I am following God's guidance as to whether or not I do chemo - then I need to let go of my doubts and just do it. He always helps me to find clarity.

As always, it's wonderful to be in Rockport and enjoying the company and home of my dear friend Karen. Cindy was supposed to come, and we're missing her, but she was tied up back in NY, Today, we went to the harvest festival, and I had a Lobster  for oly $9.00!!! Can't beat that - almost went back and had another one for dinner! Tonight, we'll head to Guiseppe's in Gloucester for some piano bar karaoke. The best voices on Cape Ann end up there to sing around the piano - and we always have a great time.

Should be heading back to NY tomorrow afternoon, but if I'm too tired, I may wait till early Mon. morning.

Wigs for Sale

Today I went in to work for a few hours. I had to send out magazines to my advertisers. Everyone greeted me with big hugs and love - it was really nice. I have to admit though - after a few hours I was tired. It's hard to understand, as I feel perfectly normal one moment, then I feel like I just want to lie down right then and take a nap. I guess that's normal - with the body using so much energy to heal, but it seems so strange.

After that, I went to Stuyvesant Plaza with Sandy to pick out a wig. It was not easy - as the wigs are not trimmed. They cut them custom for you - so each one I tried on had bangs down to my nose. So you had to kind of imagine how it would look if it were cut to your liking. I did find a color I liked, same crazy red multi color I have now - but a little bit lighter. That's ok, as I'm thinking I'll be looking pretty pale when I'm doing chemo so darker would definately not be good. The only problem was, this wig was longer than I wanted, and cost $330. In the end, however, it was the best choice - the most natural feeling hair, and the right color, and it looks like I'll end up going with that one. We get a discount, as employees of Stuyvesant Plaza (I do work for the gallery) and Sandy thinks she can talk Jean Paul into a deeper discount. I was hoping to pay no more than $250, as my insurance doesn't cover anything towards a wig....but for something I'll wear every day for over 6 months, it just doesn't make sense to compromise quality for price. I just hope it looks good when it's cut. Right now, it looks pretty strange. I'll post some photos here - let me know what you think. First row is the wig I like, though it has to be cut. The brown wig is the cut I like (except for the front view). They're telling me I can have the red wig with the brown cut. Hopefully they're right, as once they cut it - it's mine.

Tonight, I was supposed to go to see a Dr. Dan Arenos speak - a dr. who brings his spiritual practice into his practice of medicine. I am looking for a new GP, and it sounds like he might be just what I'm looking for. But I'm finding I'm too pooped to go back out tonight. I did manage to meet Bob after work for a quick drink, and that was nice - as I won't see him again until Monday - going to Rockport for Harvest Festival Weekend - my last R & R before starting chemo. I've always loved this weekend in Rockport - with music all up and down the streets, and a festive atmosphere. Sat. night will be at Guiseppe's for the piano bar karaoke, where some fabulous voices always show up. I might even sing this week! Singing is good for the soul.

The Sisterhood

Today my former boss Darcy came over for lunch. She was the best boss I've ever had, and has become a good friend. She was in the middle of her treatment when I found out I had BC, and she was such an inspiration. She handled it so well that it made me believe I could too. Interestingly enough - they are prescribing the same exact chemo recipe to me that she did. I'm not sure I'm going to do that, as the dr. I see in NY may have different ideas, but it was good to get all the info from her as to how it went. We had a great lunch, and compared notes on all sides of the BC spectrum. She gave me all kinds of tips - like taking mints before chemo to reduce the metal taste - drink lots of water - and  definately to take the anti nausea meds they give you.  I so wish she were still my boss - but she's starting a great new job tomorrow - and I wish her all the best. NY State Police is lucky to have her.

Heather mentioned that there is so much money going into breast cancer research, because women have banded together in all these walks and awareness campaigns. Well, there is also real work being done in the trenches with women sharing with one another about their BC experiences. I have to say when she said that, I had a newfound respect for all these walks and fundraisers. In the past I had seen it as a lot of women making a lot of drama about the disease, and perpetuating the tragedy that is breast cancer. But now I get that it actually is making a difference.

Tomorrow, I'll go to work for a few hours to get the October magazine out to my advertisers. Then, I'll head to Stuyvesant Plaza to talk to Sandy at the gallery, and look at some wigs at Jean Paul's salon. Sandy called tonight to let me know I sold another breast painting. So two of the eight have sold, and my friend Candice is buying my Leda and the Swan painting for her boyfriend. Every little bit helps! Some time down the road, I may have a pre holiday open house to try to sell some more paintings. I will have to pay up to $1,000 out of pocket for co-pays for out of area care, and then the cost of alternative therapies. So I'll definately need to sell some paintings.

till tomorrow.....

25 People and Picasso Boobs

Well today was my first disappointment. I'm hoping things will change, but the "reveal" of my new girl was not what I expected. It seems that the larger implants are designed for women who are wider than me - so where I thought it was taped off to the side, it kind of extends out to the side. I think my arm is going to get chafed!!!! Also, it's quite heavy, and feels like it's literally bruising my ribcage, and it simply doesn't look like the other one. I feel like a Picasso painting! I'm afraid Dr Liao was right - that I might want to tweak the other girl to match. I'll have to decide if I want to do that, or wait and do the tissue replacement after all - but I'm not sure insurance will consider that an option. they're saying that some settling will occur, and that could change things a bit, so time will tell. It could mean more surgery down the road. At least these are things no one else will notice but me.

I did find out that he was part of a team that actually transplanted a hand this past weekend, to a burn victim who was badly burned in a nightclub back n 2003. They made front page news on the Boston Globe. I'm very happy with the entire team at Mass General - I know I had the best, but I think this is just a matter of the implant options just not matching my particular circumstances. Bob asked today how many people were involved in my surgery. The answer was around 25 people. There were the surgeons, and their assistants (interns),nurses, anesthesiologists, the people who did the nerve block - and various other OR techs. Wow. Amazing.

I'm surprised to find that despite the big city hospital - they are actually very approachable and friendly. Dr. Liao, who is Chinese (I believe) was concerned about accupuncture needles going anywhere near his implants, saying - I really don't know much about accupuncture. I asked him what kind of Oriental he was not to know about it....he kidded that he had seen these charts in his grandmother's house with all these points on it, but never learned about it!! We had a good laugh. And Dr. Gadd really was personally attentive about the chemo doctor I was about to choose, and called me the poster child for mascectomy recovery. She gave me a big hug before I left.  I have to say - I have always felt very comfortable with them, and everyone else I've dealt with out there.

Hoping I can sleep better tonight without the drain. That will be nice.

Boston Tomorrow

Feeling a little guilty today. Bob is here putting away stuff for fall and I can't help him at all. I've noticed that things are changing around my new "girl". The tape is more pliable, and things are settling. My rib is actually hurting because of the weight of the implant, before it was taped up. Since I'm not able to wear a bra yet, I'm hoping that in the future that won't be an issue. I do remember when I felt the implant in his office, that it was very heavy. Anyway, I'm feeling the muscles around my arm and breast doing more work now that the breast is settling, and it makes me a little more cautious. I just don't want to pull anything the wrong way. Other than that, feeling just fine - though not ready to set the world on fire. I love the fall, so I just sat outside and watched Bob work for a while, and came in and made some cookies and prepared a pork roast for dinner.

My cancer job for the day is to do some research on what foods are best before and during chemo, and what supplements I should take. Of course, western medicine knows little about vitamins, so they tell you not to take any, but I'm certain if I do some work, I can figure it out. I was very low in vitamin D when they did my bloodwork, and this is supposed to be quite common in cancer - to the point that some are saying vitamin D therapy can either prevent or cure cancer. So I'm thinking I'll at least be taking that. So far, a lot of different ideas as to what is best, and there are definately some that are recommended not to take. Apparently, some gain weight and some lose weight....we'll see how that goes. They're saying you need lots of protein, and the one issue I was having on the macrobiotic diet was protein, so I think I may continue eating meat while taking chemo. I'll do a lot of fish, and try again to find more dishes with beans that I like and can eat. Nuts just don't agree with me, and dairy never has.

Tomorrow we head to Boston to get the last drain out with the plastic surgeon, and get the tape off. I'll also see my surgeon for a follow up. I've gotten several good recommendations for chemo doctors here in NY, and Wed. will be time to make a few appointments.

Wealth of Information

Went to church yesterday, and had a nice chat with Heather Ferris, tumor registrar for St. Peter's hospital. She had promised to do some research in finding just the right dr. for me. She was really a smart cookie, as she talked to one of the radiologists. Even though she knows I don't plan on radiation, she figured he would give her a non-biased view of the chemo doctors. Turns out that it was the same dr. my husband used years ago when he did radiation for lung cancer. I don't remember him specifically, but I do remember that he liked him a lot, and that we were impressed with him. He actually suggested that I make an appointment with him anyway - to discuss my case, even though he knew I was not planning to do radiation - he felt he could be helpful. How nice is that? And he didn't know that I knew him from the past. He was curious as to why they recommended radiation given my circumstances saying he didn't think it was necessary. That was encouraging in the sense that it substantiated my thinking that most doctors overprescribe. So I will make an appt. with him as well.

He recommended a doctor at St. Peter's that he thought would be open minded, and I will make an appt. with him as well. Another doctor came highly recommended through two other people, but he is in a group that I was warned to stay away from. I think it's more that the group is so large that it's become a machine rather than a personal health advocate. I'm still considering that appt. A doctor at Albany Med who has purchased a few of my paintings also stopped by the gallery, and told Sandy she had some recommendations. So I'm waiting to hear from her. All in all, I feel I'm in good stead to find just the right doctor.

Had a nice breakfast with friends after church, and Bob came over in the evening. A nice visit from Aunt Shirley helped me to catch up with all the latest in the Patenaude family.  A good day.

Covered Bridges and Spiked Hair

Feeling more energy today - back to normal again. I really have no right to complain - not one day have I even felt as bad as when you do when you have the cold or a flu. But I can see that I do have more energy on some days than others. It was a dreary day again though - so Krysta and her friend Melissa and I went to Vermont for lunch. We ate at a lovely little restaurant (Ponce Bistro) and stopped to take this photo at the Arlington covered bridge. You can see my chopped off hair here - still working on it. I'm sure it will be easier to wash and dry - but to keep from being frizzy - I think is going to be a challenge. By the time we got back, my hair was going every which way. I think I need to spike it - that may do the trick!

Only once in my life did I have short hair - when I was pregnant w Krysta, my hair was so lifeless I thought it might help - but instead, it just looked awful. At least we have more products now!!! It's too short for my in-styler now though, and that was my only saving grace for non-frizzy hair. Oh well - better than bald I guess! In the scheme of things, I have truly learned that most things we stress over really don't matter much. I can even look at my fake breast, which is taped off to the side, and has a big scar across the front of it, and not be upset. I am anxious for the reveal though on Tues. to see if my doctor is right - that I'll want to tweak the other breast to match. I really don't think so. Don't get me wrong - I liked my girls - they weren't in bad shape for 60 - but the right clothes, and bras and I think I'll do just fine. I have a few months to decide anyway - when they add the nipple and the tattoo!!! My dr. still laughs when I tell him I want my tatooed areola to have a design in it. He told me I might stress his nurses out by telling them they had to do artwork on my breast LOL!!!

This week, I really need to get back to work. They are allowing me to work from home for 4 - 6 weeks, so that won't be bad, and should include my first chemo treatment as well. I do have Monday off though, and will be in Boston Tues. so looks like I will work Thursday.  I must say - although I've been feeling fine, and capable of working - my mind has really been centered on healing, and work seemed like too much of a distraction. First things first. One thing you learn when you get cancer is priorities!

When the Student is Ready......

....the teacher appears. After I posted on fb that I was looking for an open minded chemo dr., a friend posted that I should talk to her sister. Well last night, at choir practice, I find out that Heather Ferris, who sat right next to me in choir, is the tumor registrar at St. Peter's Hospital. In her job, she apparently knows all the chemo doctors in the area. When I was talking about the chemo dr. I saw in Boston, and that she came from Ireland - Heather even knew exactly who she was!! Heather validated that I'm not the only one out there looking for a more holistic view of healing, and mentioned a local dr. she thought might be good. She was going to do some research, and we're going to talk on Sunday. Barb, my friend from work has a friend who works at Albany Med, and mentioned a Dr. Collera (not sure of spelling). So my search is filling in nicely. By Monday, I should be able to select a couple I want to meet with and make some appointments.

Today I didn't feel as good as prior days - not sure why - just felt tired. I didn't sleep well the night before, and I'm thinking that as I'm feeling better, and doing more, my body is reacting by reminding me to slow down a bit - that I did have major surgery last week. Krysta is still out of work, and not feeling well. So we decided to get out in this beautiful day to try to perk up but we both wore out before too long, and came right home. So hopefully, I'll get a good night's sleep and be a little perkier tomorrow.

The Good the Bad and the Ugly!

Yesterday was my day to find a chemo doctor in the capital region. It wasn't fun. I had two doctors I had researched and thought they would be a good fit, based on their open-mindedness. In each case, the practice followed through with all the info, each telling me I needed to send all my pathology reports to them before getting an appointment, and then telling me I wouldn't get to see the dr. I wanted, but they'd be happy to set me up with another dr. When explaining that I didn't want just any doctor, they acted like I had three heads. Ugh. I felt like I was speaking a different language when I tried to explain. It was very frustrating. It made me want to run back to Boston.

In the afternoon, I had a meeting at church for the healing service for October. Being Breast Cancer month, they asked me if I would do the message. I thought they were pretty brave asking me - with my woo woo nature and all, but I agreed. The message will be about how not only do we empower ourselves by accepting the divine power within us for healing - and by guiding our own health care rather than simply doing what we're told, but we as women have a great deal of power to influence future health care by avocating on the part of our children.....by what we teach them, by what we buy at the grocery store. It's a confusing message to most people that the answer to healing does not come from outside of you. Even though we use doctors and medicines and hospitals etc., ultimately, unless we allow the divine to work within us, healing will not occur. And healing means much more than healing of the body. My main message will be that we are not a body. We are eternal spiritual beings in a temporary physical body. The meeting went well, and the service will be on the 29th of October at 7pm. All are invited.

After my frustrating day, I felt I needed to get out, so I had dinner with my friend Glenn and his girlfriend Elizabeth, and Bob. Glenn had been through prostrate cancer years ago, and both he and Elizabeth had information that will help me in my search for a chemo doctor in NY. It was really helpful to talk to them. While I was there, my surgeon, Dr. Gadd called from Boston to give me the pathology report from surgery. She was surprised but happy to find me out to dinner with friends. The pathology came back as accepted....clear margins, no node involvement and the tumor was 2.5 cm. So that was good news. I told her I was having a hard time finding a dr. here, and she told me I really should go to a major center. I asked her about Dr. Higgins, the chemo dr. in Boston I saw, and told her I thought she was a little too aggressive for me.She laughed and said - well YEAH - I didn't want to give you someone you might be able to wimp out on!!!!! She really drove home once again the fact that triple negative BC is very likely to come back if I don't do chemo, and if it does, it's much harder to deal with. It was actually a very nice conversation, even if I didn't agree completely with her. I do understand that they truly have my best interests at heart. She even offered to call one of the doctors that wasn't taking new patients, and convince them to take me! I just think that most people in western medicine don't realize the value of the spirit in healing. Alternative and complimentary medicine takes the whole mind/body/spirit into account. The debate continues. I do believe the future of medicine is in energy medicine, not chemical medicine.

I have to say that it felt like in NY, the doctors were so busy that getting chemo was like an assembly line process. I do understand that not everyplace can have the offerings that a large city like Boston can have, and I'm sure my negativity towards chemo is affecting my search. I'm going to try harder to be positive today. It will all unfold as it should.

Back From Beantown

Just got back from Boston, and everything went well. One drain down, and one  more to go. I felt SO bad for Krysta though. She still feels awful, and to make matters worse - she spent the whole day on the phone trying to straighten out her health issues with work - needing paperwork from the dr. that he is not providing. What a mess. Poor kid - she is totally drained. I literally feel better than she does!
The doctor said everything looked great, but there was no big reveal today. I thought he would take the tape off, but he's going to wait till next week, so I still don't know what my new girl looks like. He thinks I'll want to do a reduction on the other breast to make them even, but I doubt it. He also says the new girl will not hang the same as the old one - but again, for my entire life, I had one that was a LOT bigger than the other, so I can't see that being a problem. But he did say that he could make a new nipple from the old one if I did the reduction, so I suppose it's a slight possibility. I think he's like an artist that wants his work to show in the best light. LOL!!! I don't plan on doing any centerfolds though - so as long as I look ok in clothes, I'll be fine.

 I have never been able to wear those pretty underwire bras, so I asked him if I could now - but he said no. Apparently, because you can't feel the new breast, sometimes an underwire can actually puncture the skin without your being aware of it. So maybe I'll at least be able to buy them to fit, and take the underwire out. Oh well, maybe I need to create a new line of sexy bras for women with reconstruction.

Last night seemed like the right time to cut my hair, so I tried version 1. I'm sure it will take some refining before I get something I like - of course by then, it will be replaced by a wig anyway!!! I'll post a photo later when Krysta has time to take it.

LUMP and other stories about my daughter in law

LUMP by Leena Luther

My daughter in law, Colleen Carey Luther (who by the way is joyously expecting my second grandchild) had BC when she was 27. Since then, she and her mother have been very active in breast cancer foundations. Colleen wrote a book, "LUMP" which is available on Amazon.com, and she has done PR spots for Susan J. Komen, and Planned Parenthood. I'm so very proud of the way she had handled her breast cancer legacy.....she will definately be a hard act to follow!!!

Her book, which consists of monologues that can be performed, has been performed by several groups across the country, and is soon to be included in an anthology along with some other very well known authors (whose names I cannot remember right now LOL!)

Here's a link to her fabulous PSA for Planned Parenthood
http://www.youtube.com/watch?v=V7aE9ZTE7tg&feature=relmfu

And a link to her book:
http://www.amazon.com/Lump-Monologues-27-Year-Old-Breast-Survivor/dp/0615484506/ref=pd_rhf_se_p_t_1

And here's a link to another local interview she did
http://leenaluther.com/impact-on-life-interview/

Things I never thought I'd say

"Michael" I said through the door of the treatment room, "You don't think an accupuncture needle could have pierced my implant do you?" LOL!!!! I had an accupuncture appt. today, and all of a sudden, I felt this fire build up in my body - surging, and building to great intensity. I've had similar feelings during treatments before - but never even close to this intensity - so it made me a little nervous!!! He tried not to laugh at me, I'm sure. He said that my body is already working overtime for healing, and with the accupuncture needles in place, I went into turbo charged healing! Wow - what an amazing feeling! After I got over my initial reaction - I found it quite funny - but just for a minute.....I had a mini panic attack!!!! Hey - all kinds of new experiences here - You just never know what's going to happen on any given day!

I was talking to Bob yesterday trying to figure out what my place is in this whole BC thing. While I admire all the women who have had BC who do all the walks and all the pink ribbon things. I can't see myself as a big pink ribbon waver. But I do think that women are really good at helping other women - at sharing their stories for those who follow them, and I think that's a good thing. Marty (my pastor) said yesterday I should write a book. I told her, unfortunately, my story is not at all unique. 1 women in 8 gets breast cancer - and all the stories have been written. So what could I do to carry the torch of responsibility? What could my my contribution be? What could I possibly offer that hasn't been done? Well sitting with Michael today it came to me that I'd love to start an organization that helped women get alternative and complimentary medical treatment when they can't afford it. I know in my heart of hearts, that if I could afford the amount of alternative treatments that would take the place of chemo, that I wouldn't do chemo. But even though the cost of that would be less then what chemotherapy costs, becuse it's not covered by insurance, I cannot afford 2 or more treatments a week for an extended period of time. I'm still concerned with being able to afford one treatment every week, which will be necessary during chemo just to handle the side effects.We wonder why we don't have more statistics about the benefits of alternative therapies - but that's why - because the average person cannot afford to pay for it without benefit of insurance coverage.  That said, I don't have the time resources to get a foundation like that off the ground either, so that will remain a dream. If God wants me to leave a breast cancer legacy - I guess He'll either have to give me another idea, or drop a great big benefactor in my lap!!! Any takers?

In my next post, I'll share my daughter-in-law's story. I'm so proud of her and her BC legacy. She and her Mom have worked for several years toward BC awareness. Her book "Lump" is a great viewpoint from a young woman with BC. Stay tuned....