Logistics

It's amazing how many things have gone right in this whole scenario, but things don't always fall into place. Looks like Krysta will have to take me to Boston after all. Not sure I want to spend 8 hours in the car with someone who has mono - but her dr. said as long as we don't share bodily fluids, I'm ok. She shouldn't have to be driving for 8 hours either - she feels like crap. But other options just didn't work out. I think we might stay over Tues night with my friend Karen in Rockport, and take our time getting back on Wed. That should make it work out better. I'm thinking she won't be able to go to the hospital with me though - last thing they need there is someone with Mono! Everyone tells me that I have to learn to accept help from people, and not try to do everything myself, but trust me, it's not easy to have to depend on people to do things for you - even though I know they want to help - sometimes it just doesn't work out.

It was a weird morning - didn't feel 100% - felt a little woozy. I did go to church, but when I got there, I wondered if I did the right thing. My friend Percilla, who went through BC last year said that some days are just like that - out of the blue, one day you're a little off. Off and on all day, I was a little woozy, but still managed to have a really nice day. Bob and I went to Saratoga, had some lunch, and I went looking for a couple of tops to wear over these drains...it's a challenge. I have one boob (the implant) all smushed and pushed to the side and taped down, the other is there in all it's glory with no bra, and then there's this big lump for the drains - I'm a real prize right now LOL!!! So trying to find clothes to cover all that is a challenge! Especially since, they probably won't be things I'll wear after. In fact, I have no idea what I'll wear after. I'm probably going to go down from a DD to possibly even a C. They told me they used the biggest implant they use for mascectomy, and it still wasn't as big as my other breast! So before I had one Big mama and one Dcup - now I'll have one Dcup and one maybe C. Surprisingly, I just find it all kind of humorous. I thought it might feel tragic. I don't mean to diminish it - I'm sure that losing a breast can be very tragic and traumatic, but it just doesn't seem to feel that way. Hopefully, I'll still feel the same way when I get to see my new breast revealed. I'm thinking that if Bob didn't run like hell when he helped me get dressed to go home from the hospital, I'm safe with him! Part of me wants to post a photo of lumpy Kathi - but then again - NO way!!! My friend and former boss, Darcy who is just finishing with her BC treatment showed up to lunch a couple of weeks ago with no wig - or no hat - and she looked fabulous!!! But that will never happen with me - I have a flat little bean head - so it'll always be a wig or a hat for me!!! Hmmmm, tomorrow I have to call some chemo doctors and start looking for a wig.

Progress continues

Hard to realize all that has happeed in the past week. This morning I planned on going to church, but woke up not feeling as good as I have all week. It feels like things are tightening up. I'm sure that's a good sign of healing, but in a strange way, it feels like going backward. I'm just going to take my pain meds as that helps a lot, though I feel like I'm cheating a bit. I'm not really in pain - it just gets very uncomfortable to feel the pulling sensation all the time, and it makes it hard to relax. As soon as I take the meds - life goes back to normal again. I'm thinking when I get the drains out, that will change a lot. Hardly anything coming out of the drains at all.

So I'm going to get ready for church, and if I feel up to it fine, if not, I'll stay home. Bob and I are going to get out for a bit today. Just need to get out of the house.

No room for negative

I learned in the past week that one of my former classmates is going through cancer right now, and another had acute leukemia 12 years ago. Both have used and continue to use alternative and complimetary medicine. It occurs to me that I am so blessed to have cancer at a time when there is so much out there. 30 years ago, there would have been no internet to research not only the wide variety of cancers, but also the wide varieties of treatments that are available. Not only that, but in the last 20 years, it has become almost commonplace to at least use some complimentary medicine. Most of these modalities have a spiritual basis to them, at least in the mind/body/spirit sense. In the past, prayer has always been accepted, but oh - there are so many forms of prayer. It also inspires me that both of these men reached out to me to share their experiences - not in a way that said - oh yeah - that happened to me too - doesn't it suck? But rather to share helpful and hopeful things they had come across. This week someone posted something on facebook that said "Everytime you subtract negative from your life, you make more room for positive." I've certainly found that to be true.

At lunch time, my friends from Racemark, Carolyn and Candice stopped by with some lunch from Putnam Market. We hadn't seen each other in about a year, so it was great catching up. Thanks girls - it was so nice to see you!

Just to keep life interesting....

Krysta hasn't been feeling great for weeks. She's been complaining about her asthma - had sinus issues, and just generally feeling quite tired. I know she's been really stressed about me, so I figured that was it. She'd been to the doctor twice, and he wouldn't give her antibiotics. Today, she went to urgent care. Well, it turns out she has MONO!!!!!! Damn - definately not what we need right now. We can't think of a time when we might have shared a glass or anything, but of course, it is a little worrisome, as I would assume my immune system is stressed by the surgery. And poor Krysta - she just feels awful. And she was going to take me to Boston on Tues. I don't think she should be hanging around a hospital. So I'll have to find a new ride. Maybe they'll let me drive.
Please say some prayers for Krysta.

R & R day (Rain and recuperating!)

It's a dreary day out there - so I'm not tempted to go out anywhere, but if it were nicer, I probably would have. I'm really feeling quite well. I'm realizing the antibiotic make me nautious if i don't take right after eating. I did manage to wash my own hair today, and even dry it. Krysta helped a little, and she straightened it for me. All in all - it wasn't too big an ordeal. I heard from a former high school classmate who said she had the tissue replacement done on both breasts. And, she took the train back and forth from NYC to Phoenix  (I think). I can't imagine. I'm so proud of myself for doing so well with the implant - but I do thnk I would have been a woosie girl with the tissue. I'm really glad to not be too restricted. Anxious to get the drains out. If not for that - I'd really have hardly any discomfort.

Tomorrow, I hope to get out a little bit. Some friends from where I used to work are stopping by for lunch.
blessings to all,
k

The New Normal

Today was a pretty normal day. I remain so surprised that this has been such a calm experience. I have been a very spiritual person for some time now, and would like to think I am at peace far more than ever before, but to think that I could remain calm through all of this still absolutely amazes me. I can honestly say that I have not had a moment of terror or panic. It's almost surreal. I have no doubt in my mind that the qigong treatment I had with Joe the day before surgery is the secret to the calm. I know.
I had some visitors today, only took pain meds 3/4 into the day, and I was able to get around quite well. All is well. Here are some photos of the healing garden at Mass General - what a beautiful place - on one of the rooftops.

Big Days!

It's Wednesday night, and I'm home from Boston. I'm surprised to feel as well as I do. The last couple of days have gone quite well. I guess I'll backtrack from here.
On Monday, Bob & I headed out to Boston for a Qigong appointment with Joe at noon, which was the perfect start. It was an amazing teatment, that put me in good stead for the day to follow. At 3:30, I had to go to get nuclear stuff shot into my nipple. Needless to say, I was NOT looking forward to that - but amazingly, it didn't hurt at all. Off to a good start. Bob and I walked around Boston all evening, and actually had a great time. We walked to the common, had dinner at Pierrot, a lovely French Restaurant, past the capital, and Beacon Hill.

Earlier, we checked into the MGH Beacon House, where we were able to rent a family suite run by the hospital. It was great as Krysta, Kenzie, Bob and myself could stay there, just a few blocks away from the hospital, for only $118 a night. The place was nice, with a kitchen, two bedrooms, and a beautful courtyard and roofdeck

 

Krysta and Kenz got in around 9pm. I have to say that I was incredibly calm and at peace, despite the fact I had never had an operation before. I have no doubt that the calm was the result of that wonderful Qigong treatment I received from Joe earlier in the day.

Krysta made me this card that was hysterical!!! I'm so glad she gave it to me the night before as I laughed so hard I would have blown some stitches!It's a round boob, including nipple that says "Saying Good Bye is never easy..." "but I'll be with you every step of the way!!!!" And to make it even funnier, she made it out to "Mook" (my grandaughter calls me Mookie) and put nipples on the "o's"!!!! TOOOOOO funny!!

 

The next morning, Bob and I walked over to the hospital at 5:30. I was still calm. Mass General was qute impressive - quite a well oiled machine. Everyone treated me with great care and comfort, and I never once felt like a number. I did get stuck for hours in recovery because my room wasn't ready - but even that was pleasant. While I was in there, my surgeon came in to tell me that there were no lymph nodes involved, which was great news! After surgery, I was concerned that looking at my missing breast would be traumatic. Even though I had an implant in, it's knd of all shmushed in right now. But it didn't bother me at all. I really think everything is going to be fine. I actually was able to sleep - was not in much pain at all. I woke up - put some make up on, and chatted with my roommate waiting for Bob to arrive. After they released me, Bob & I had lunch and waited for Krysta and Kenz to get back from the Aquarium.

I will say the road home started to get to me in the end, because the pain meds were wearing off, and i couldn't take any more till I got home to fill the script at the pharmacy.Once I got settled in tonight, and took the pill - I felt much better. Thanks so much to everyone who sent well wishes and prayers - obviously they worked!

 

Surgery is a success!

One day post op and I'm doing just fine. I don't have my glasses on right now, as they're in the car, so thi will be brief, but I'm not in any pain, and pretty mobile I wasw thrilled to hear that no nodes were involved. Thank you everyone for your prayers and good wishes. I am so grateful, and so blessed. I'll be in tough more when I have my glasses. I expect to be going home today -b ut still waiting for the dr. to confirm.
More later!
love,
k

Final Countdown before heading to Boston

My last day before heading to Boston, and much to do. I still have floors to scrub, and more house cleaning to do (my favorite !). Clearly I won't get as much done as I would like - but I'm sure my daughter will help. Housecleaning has never been my forte, but sitting here looking at all the things that need to be done while I'm recovering, will be awful, so I'm trying my best. I still have to take my paintings down to the gallery for the show next week.

I'm a bit nervous about things I may be forgetting. With the change in surgery plans - is there something else I need to prepare for? I haven't filled out hippa forms yet - not sure if I should take a warm robe or a light weight robe for the hospital - and what if I need to stay in Rockport for a couple of days after I'm released - what clothes do I need? I'm very happy to be having surgery in Boston, but the logistics are more complicated. My friend Cindy, a nurse, is going to stay with us in Boston Monday night, and stay through my surgery so she can be a support to Krysta, who I know is going to struggle through this. I'm so glad she'll be there.  Bob is great, but he is so low key, and Krysta is so intense that I'm not sure he'll be of much help to her. Plus, he's never been through surgery - not his own or anyone elses!!! I think he may be a little nervous about his role in this.

I'm wondering how different I'll feel when I come back here next week. Tonight, I think I'll take some photos of the original Kathi just for old times sake!!! After going back and forth a lot about cutting my hair, I think I've opted not to. Given the frizziness of my hair, I'm thinking that leaving it long will be easier to put it up than fuss with styling it. Especially since I have no idea what I would do with short hair - I've NEVER had it!!! But who knows - before the day is through - I may decide to chop it off!

Preparations....

Today, I posted the paintings on fb (I usually post new paintings there) and I figured it was time to mention the surgery. For some reason, I felt like I was keeping this big secret by not mentioning it on fb. How do you get on every day and share pleasantries and never mention this huge thing that's happening that has become a major focus of your life? I was hesitant, because cancer has such deep meaning to some people, and you never know what you're going to get. From the start, I have not wanted to be treated like a victim....I just don't think it serves a purpose to consider that. So I was afraid I would get a bunch of people saying how tragic it was. Instead, I got a bunch of people telling me how strong they knew I was - and that they knew I could get through it. I thought I was going to be reassuring everyone how I was doing, but they reassured me. It was really empowering, and a great blessing to me. Thank God BC isn't the death sentence that it used to be, and people are starting to view it as this crummy thing you have to go through

Krysta has been very active in the breast cancer walks, and for the last few years has organized a major fundraiser at work for Breast Cancer month. She shared with me the message she sent out with her campaign - on how personal it was for her this year. She had these big crocodile tears in her eyes when she was telling me, and it broke my heart. I know how hard this is for her. She's not used to seeing her mom as vulnerable. The best I can do though, is to stay strong and show her that women are tough and can get through anything. Here I am at 60, and this is my first operation - she has had so many surgeries I can't even count them, and she's only 35. I know how fortunate I am. And while I never ever took for granted the beautiful people in my life, at times like this, you appreciate them even more. I am truly blessed.

Here's another painting I did - There are 8 alltogether, and will be in the "Reveal Fall" show at Sorelle Gallery starting on the 28th. This one is named Qi - for Divine life force. I can't tell you how much the Medical Qigong treatments I had helped me. They may not have gotten rid of the cancer - but there was a great deal of healing going on. I have another appointment Monday to get my chi flowing for surgery the next day.

 

More Paintings!

Almost done in my series of breast cancer paintings. Here are a few more. I'm trying to convey the many layers of emotion a woman feels when she has breast cancer. Also, I'm trying to sell some paintings to pay for my alternative treatments. I told my friend s last night that I was going to "milk" it as much as I could LOL - pun intended!! I do think they would be interesting paintings in and of themselves, and especially that there is a story behind them. They would certainly be conversation pieces.

The symbol on this one is "Safety"

This symbol is "Protection"

 

This one is "Woman"

 

Recalculating.....Recalculating

Oh my God, what a day. I did some more research on the trans flap surgery so I knew what was going to happen, and how I should prepare. I had done some before seeing the dr. last week, but not extensively. I had decided before seeing him that it was just too much surgery and recovery, and that having a mascectomy was enough to do at one time. But when I saw the dr. he assured me that the recovery wasn't that bad at all, and that the end result was much better. Mostly, it would be better if I did radiation. Well today I read story after story of women who took 8 - 12 weeks to get back to work - of being in a great deal of pain for weeks, even hunched over, and some who had pain for years afterward. It was pretty scary, and irreversable. So I sent an email to the dr. with a whole list of questions. When he called, he admitted that his first choice is usually implants, but because of the recommendation for radiation, he made that plan b for me. I told him I did not plan on doing radiation, and would only consider it if I had node involvement, and then, probably only on the nodes. He did say that while his patients, and he has done hundreds, have very rarely complained about the extreme recovery and issues I spoke of, that this was major surgery, and he understood my concerns. After our conversation, he thought that doing the implant would be the best choice, and if I was unhappy with the implant, then I could do the tram at a later date.


Soooooooooo, I'll still have surgery on the 25th, but I'll only be in the hospital for 2 nights. I'm not thrilled about having a silicone implant - but the tradeoff of such major surgery that is irreversable, just didn't seem to make sense. I do feel better about this. I can't imagine going through all that recovery - while I'm doing chemo.  So hopefully, I've made the right decision. That has been the hardest part of this whole journey - just being sure I made the right decision for me. Everyone has such strong perspectives about cancer. But I'm not everyone. I have to make them for me.

Distracting Day

Well today wasn't the best day, for sure. It was my last day at work before surgery, but I was very distracted. My head is going in so many different directions! We have two publications closing next week, and I sure hope that everything is submitted ok. I'll check emails for the next couple of days but next week, they're on their own.

I was able to find a family suite sponsored by Mass General where Krysta, Kenzie and Bob can stay Monday and Tues. night. That will be easier than staying in Rockport, as I have to be at the hospital at 7am Tues. I had to go online to fill out this huge form for my medical history for Mass General. Unfortunately, I think those are the only things I really accomplished today. I was going to go to Rockport tomorrow for a couple of days to kind of center my spirit, and have an appt. with Joe, but that's not going to work. I have to finish cleaning my house, pull out my fall clothes, and do a few things to get the house buttoned up for fall, since I won't be able to do that for a while after I get home. I did manage to get out an email campaign for the gallery tonight for the show on the 28th. Now.....I have a couple  more paintings to finish for the show.

Clear Scans! Yeay!

So today, I got the results back from my bone and chest scans. Thank God, all is well. They said my bones showed a little wear and tear (indicating arthritis) but no matastisis. That was a huge relief. Surgery will definately be on the 25th at 9am at Mass General Hospital. I have to go in on Monday to get a shot of nuclear stuff in my breast (ouch) so in the morning, they can do a sentinal node biopsy. This will tell if any lymph nodes are involved. Hopefully, that won't be the case. Suddenly, I'm realizing that the 25th is only a week away - somehow I missed that! So now, I'm trying to get nightwear for the hospital, figure out how to get thing done here before I leave, and if I can squeeze in a trip to Rockport this week. That would do wonders for my spirits, and getting a qigong treatment would be icing on the cake. Much to do. And then I have to decide if I'll cut my hair. They recommend that as it's easier to care for while you're recovering, and then it won't be such a shock when you lose your hair with chemo. But with my frizzy hair, it just might be easier to put it up in a clip - decisions, decisions. Apparently, washing your hair is a challenge. And I'm not sure I'll be able to wash my hair in the hospital - yuck!!! I also have to be sure I have makeup that I can apply with one hand - as there's no way I'm going 5 days without makeup. I may feel like crap - but i'm not going to look like it!!!

A Challenge for YOU!

Ok, so I'm thinking now that since the best thing for cancer is laughter - I have a challenge for my friends. I'm having a contest for the funniest joke. Keep in mind that while "suggestive" jokes are welcome - you never know who's reading this - so don't go TOO far!
So let the games begin - best joke wins a prize - you have until October 25th!

I'm pooped today - Bob said "Of course you are, not only did you have to sit through two days of dr. appointments and tests - but now you have to relive them with everyone you talk to when they ask you how it went!!!" I realized he's right - as much as I'm happy to answer them - it is like reliving it all over again and again! Not that it was horrible - but certainly tiring. I keep asking myself - am I tired because of the cancer - or just tired because of all the extra things i need to deal with. I think it's the latter, as I have to say, I really haven't felt sick at all.

Still no word about the scans - hopefully I'll hear tomorrow - have to admit I'm stressed over that. If anything shows up - it will complicate things greatly. I really need a qigong treatment - I always feel so great - and so clear afterwards. If surgery isn't until the 25th, I may just take a mental health trip to Rockport this week to restore my spirit, and will definately try to get a treatment from Joe as well. He (my medical qigong practitioner) has been such a blessing to me. He has an amazing gift, and I have had so many powerful experiences in his presence.

September 14, 2012
So today, I wait to see if I will get the results of the bone scan and cat scan. I'll admit to being a little anxious about this. Regardless, I really have been able for the most part to look at this BC adventure as evidence of the fact that "I am not a body". That is a major premise of A Course in Miracles, which I have been studying for many years now.....one of the most life transforming things I have ever done. The course teaches you that you are a spiritual being in a temporary body, and that everything you consider to be true is something someone taught you. In reality, your own inner truth is the only real truth, and that comes from God. It reminds you that you in fact, create your own life by your belief systems, and you can choose to live in fear, or live in joy, just by changing your thoughts. So it would seem that this is an opportunity to put that to the test. BC certainly isn't a fun thing - but within this experience are sure to be opportunities for growth. Countless cancer patients have discovered that in the long run, but I'm trying to start my journey with that in mind.

The biggest thing for me is that I've come to a place where I need to compromise on my beliefs of alternative medicine over western medicine. I swore I would never do chemo, which I have always viewed as far more beneficial to the pharmaceutical companies profit margins than real peoples health. Perhaps this is a way for me to see that nothing (and no one) in and of itself is bad. Even things that are good can be used in bad ways, and vice versa. While I started this journey in hopes that alternative, natural medicine and spiritual cleansing could take care of this, the tipping point came a few weeks ago, when I realized that triple negative BC is so much more virulent than others. Not sure how I missed that. But I am so very grateful for the 8 weeks I had doing extensive Eastern Medicine. I believe everything happens for a reason - and I have no doubt that put me in the best place possible to help me face the ordeal I have ahead. I had some amazing and powerful experiences during that time.

Since day one, I have been at peace, and not been fearful, again ACIM (A course in miracles) in action. I don't fear, nor believe in death - I believe our spirit is eternal. That said, I'm very content with staying on this earth plane, and feel I have much to do. My big thing is that I want to live well, and not be sick all the time. So my objective in this will be to get all the treatment over with so I can live fully in a physical way. And my challenge will be to live fully in a spiritual way even during the treatment.

Right now my plan is to do chemo, but probably not as much as the doctors would like, and not do radiation. But the results of the scans, and the surgery (if nodes are involved) may alter those choices. I should say now that I truly believe that alternative therapies can cure cancer. Often, however, it's a slower process. And unfortunately, alternative therapies are expensive as they're not covered by insurance. Also, you have to weigh the risk you take by giving the cancer time to spread, and having a bigger mess to clean up. I will continue with Qigong and accupuncture along with my treatments (they greatly reduce the affects and the toxicity of chemo). In the meantime, I will do my best to see the "good" in western medicine, and stop viewing it as this pharmaceutical monster trying to get rich at the expense of fearful weakened people.  The course would say nothing is "wrong" only that everyone has a different perspective. Clearly, I need to change my perspective. If I'm going to put toxins in my body - I had better have the perspective that good will come of it.

Much to do today - trying to prepare for surgery and recovery when i can't do some things. Hopefully get some painting done. The other day, I did a few BC paintings. The gallery is having a show with a fall theme, and since Oct. is BC month, I thought it might even be a bit cathardic to do some themed pieces. Each one has a Chinese symbol on it. The symbols say "Healing", "Spirit" and "Breast".
I've included some images.

 

A few days before my 60th birthday, I found out I had breast cancer. That was almost 3 months ago, and now, I am preparing for surgery. I created this blog thinking that journaling would be a good way to express the day to day ups and downs of this journey. Also, it serves as a means for family and friends to check in on my progress without my having to email everyone.

So just a quick synopsis of how it all started....
First - the leaky nipple. I watched it for about a week, and went to the dr. That day, they did a mammogram, an ultrasound and went right to a biopsy.
Next was an appt. with a surgeon in Saratoga, who told me I had stage zero, DCIS. But since it was in two different sites, and the cancer was comedo type, he said he  recommended a full mascectomy.
Thinking this was pretty extreme for stage zero, I made an appointment for a second opinion at Mass General in Boston.
In the meantime, I started an alternative therapy regime of Accupuncture, Qigong and Chinese Medicine. I started seeing Michael Wayne, my accupuncturist in Saratoga, and Joe Rogers, a medical qigong practitioner in Salem, Ma. I had known both of these men for years, and had great faith in them.
When I got to Mass General, I found out the dr. had misread the pathology reports. While one site was DCIS stage zero, the other was stage two, and invasive. This definately changed the picture. The dr. said she felt it would be safe to try the alternative therapies for another month, and we could rescan to see if there was any improvement. I felt like I was rushing the alternative therapies, but it was worth a try. Unfortunately, at the end of the month - there was no change in the tumors.
So here we are preparing for surgery.

Yesterday, I met with the surgeon, the chemo oncologist, the radiation oncologist, and a whole assortment of people from Mass General. Today, I had a bone scan, and a cat scan. I'm praying that there is no sign of metastisis. Apparently, the triple negative cancer that I have, has a very high rate of matastisis, and is fast growing. The good news is that this is true for the first 3 years, but after that, the rate of recurrance goes down substantially. Their answer is to bombard it with chemo and radiation so it doesn't come back. I am not comfortable with aggressive chemo. I will wait to see if it has spread, and if there is any lymph node involvement, which we won't know until surgery.