July 22, 2004 Hi everyone, I apologize for being bad about corresponding about all of this, probably everyone knows different details. I was called back for extra mammograms because of calcifications and a needle biopsy was taken a week or more ago. Although there was no cancer found in the core sample they took, they did find "atypical ductal hyperplasia." In and of itself that wasn't too worrisome- it just looks "goofy" as my Dr. says, but because this corresponded to an area where more but fainter clusters of calcifications were seen, the Doctor felt that this area needed closer scrutiny and more biopsy. So I was scheduled to have a wire excisional biopsy tomorrow (Friday 7/23). They want to remove the whole goofy area (about the size of a piece of sashimi) and biopsy it more in depth. Unfortunately, today I caught a cold and can't shake this fever, so I am postponing the surgery- it will probably be scheduled sometime next week. I will let you know when I have a new surgery date and hopefully by then I will be stronger and calmer and more ready to have this done. It will take an additional week after surgery to get the results of the biopsy. Thanks to everyone for all the prayers and good thoughts and especially all the reiki and other healing vibes. I appreciate all of the stories, advice and support, and am sorry that my voice hasn't been lasting long enough to communicate with each of you over the phone. It's been an amazingly busy summer as we prepare for our shows in Dallas. I'm sure part of what this is all trying to tell me is to slow down! My schedule is clearing a little, so hopefully this will be possible. I will certainly make time for this recovery process. Thanks to all again, lots of love to each and every one. XOXO, July 27, 2004 Hi everyone, Thanks for all the support. I am feeling much better- almost over my cold. My surgery has been rescheduled for this Thursday, July 29th. I start at 7:30 am with the localization and insertion of the wire guides. Then I hit the main operating room at 8:45. I'm hoping that factoring in the 1-2 hour recovery time I might be done and on my way home by noon. I don't know if that's optimistic, but it roughly follows the schedule they have given me. It will take a week after surgery to get the results of the biopsy. Masami will be with me the whole time and Noreen will keep him company while the surgery is happening. It sounds like they can both be with me in the recovery room right afterwards, so that's great. For all of my reiki friends, I would love to be sent reiki any time after the whole process starts. Gloria sent me reiki during the last biopsy (which was a little like the first part of this one) and it practically put me to sleep on the table! So I know it can help calm my jitters and get me through the process. I'd love to be able to do it with the minimum amount of drugs. I'll be at Kaiser Hospital at Moanalua, Hawaii in the main operating room. Again I appreciate all of your prayers and support. Lots of love to each and every one. XOXO, July 31, 2004 Hi everyone, Well, it's Saturday and I feel very good. Virtually no pain, I even laid on my tummy without any problems. It's amazing. They sent me home Thursday afternoon with Vicodin and Docusate Sodium (a stool softener as the Vicodin makes you constipated) but one dose of those at dinner time and I knew I didn't want to do them again. Luckily I didn't have to take anything for pain after that and really haven't had pain since I took the big bandage off and took a shower before dinner last night. Surgery went well. I sure feel like they got everything that was a problem out. My only issue was a bad anesthesiologist. She gave me a "boatload" (her word) of drugs even though I asked her not to give me much. So I think I'm still sleeping all the time because of that, though luckily I had no nausea afterwards from it. Just a bit now and yesterday that I think is related to the anesthesia still in my system. The scar is a little over 1-1/2" long and horizontal. So far no evidence of the promised dent, but I think things are probably still rather swollen inside, so we'll have to wait and see on that one. Still, Masami is relieved and my breast looks basically the same.
People are asking me what they took out, if it was a lumpectomy. There was no lump. Originally they had found one cluster of microcalcifications. Microcalcifications, tiny dots of calcium, don't worry them at all, it's only when they cluster or clump in certain ways that they look more closely. When they zoomed in to look more closely at the area of my cluster, they found fainter- almost undetectable clusters "in the neighborhood." They did a core sample of a more obvious area and found atypical ductal hyperplasia- that is a few atypical cells that were growing in a duct. These are not cancer, but might somehow relate to cancer- they really don't understand how everything relates at this point. But because things looked a little odd in this general area, and because the area was rather large and spread out, they didn't feel like a small core sample was really giving them an accurate overall view of what might be going on. They really wanted to take all of the odd tissue out and see it under a microscope, which is the only way they can really determine what is happening as these anomalies they found barely show up on Xray and are not visible at all on other methods of looking at (or feeling) the breast. Because my family seems to have these kinds of breast issues- no cancer, but microcalcifications and fibercystic problems, I was sure these issues might come up in mammogram again. I felt it was far better for them to really examine the area they found so that even if they don't find any problems, the next time they see those kind of anomalies, they will have a better idea of what might be indicated. So part of the goal was to create a baseline and a track record. They will also bank tissue so that if there are future developments in science, they can reexamine it.
So basically what they removed was a hunk of breast tissue, the parameters of which were defined and mapped via xray before surgery. Now they will biopsy it and I should have the results in 4-5 days, though my post op appointment with the surgeon is Friday and I don't expect that I will really hear from her before then. I'm hoping that will be the end of it, but it will depend on what they find in the biopsy. For now I feel strongly that there was some kind of little problem and that it was totally removed. This whole thing strikes me as falling in an area that science doesn't know that much about. So while I appreciate that they want to act aggressively and avoid further problems, the truth is that they don't know with certainty that there would be further problems, almost no matter what they find in this sample. I do think this was the right choice for me at this time and I'm hopeful that I won't have more problems from it. I certainly learned a lot about hospitals and the whole health care system from this experience and I'm sure that will come in handy in the future. Certainly Masami and I have both gotten a lot of material for new paintings. Before I went in, we cast my breast as we knew it would never be the same. It made me realize how we much should appreciate our breasts. I don't think we'll ever really tackle our current breast cancer epidemic until as a society we come to terms with our breasts in all of their roles and glory. But perhaps that's another email and another art project. I just feel so blessed to have gotten so much support in so many ways from everyone. I hope I'll be able to write real thank yous soon! Lots of love to you and yours, Aloha, XOXOXOXO August 3, 2004 Hello everyone, Well after an optimistic few days and a speedy recovering, the doctor call today with bad news. They did find some cancer in the biopsy they took. Two different places, one was about 1/2" long and one just under 1/4". The other bad news is that both places were near the edges of the sample, so they want to go back in and remove more material around where the cancer was found. I don't really know the details of all of this yet. The good news is that it is a slow growing cancer, not an aggressive one and the doctor feels that it can still be contained. She says I have options for surgery, but the only one she outlined on the phone was a lumpectomy where they would also remove lymph nodes. This would probably be followed up by radiation and maybe chemo. She wants me to consider more radical surgery, I think, as well, although I don't know if this counts as her other "option." She wants to "not rush it" and "let it settle in" but her idea of this is scheduling the surgery next week rather than this week (!) At any rate, I will see her in person tomorrow afternoon (with Masami) and should be clearer on it all after that. I will also ask to get another opinion before I make my decision. I feel like so far I've been making good decisions, so I hope I can keep up that pace and place and just feel good about whatever I choose to do. I'm sorry I haven't called more people with this news, but I don't have much time for it all to sink in and to do research before I see the doctor tomorrow, so I think I need my time to digest it all and I will make more calls afterwards. It's been rather a shock, as I'm sure you can all imagine. The good news remains that I'm healing well, I still feel confident they already got it all out, I'm in good hands, and I have great supportive friends and family. I love and appreciate each and every one of you! Aloha, August 6, 2004 Hi everyone, I got my results and two opinions in quick succession and now I think I need to lay low and just absorb everything and get really clear on things. So while I truly appreciate calls, please understand if I don't always pick up the phone. Some things feel right to me and parts don't yet, so it's a lot of sorting out. I so appreciate everyone who's offered advice and their own experiences. Every day that feels normal (I feel very good physically now)- is something that I truly savor. (Two weeks of cold and then surgery recovery made me out of it- the cancer itself has been asymptomatic as far as I know) I'm still waiting for a more normal painting day- I finally succeeded today. I realize how much I miss painting and how much it helps me to digest things mentally, emotionally and spiritually. So I think over the weekend I'll have a couple days like that to get back on an even keel. Well since I got this far I might as well give you the highlights of the report. I had two small cancers, a slow growing type. They were both ductal carcinomas (they started in the breast ducts) but both had become invasive (they had reached the surrounding tissue). One was .5 cm and one was 1.8 cm. These were both found in the tissue the doctor removed last surgery. She gave me a new image, she removed a chunk of tissue "about the size of a hotel soap." I do think she stays at better hotels than we do (!) it was 6.6 cm x 3.1 cm x 1.5 cm. Unfortunately the cancerous areas were close to the edges of the sample, so they want to do more surgery to make sure they get enough tissue from around the cancers to test and make sure it isn't cancerous- "clear margins" The good news is that these additional areas to be removed are at the top and towards the side of my breast, so don't involve my nipple. They will need to take some skin since one cancer was close to the surface. Because the cancer was "invasive" or already in the breast tissue, they need to see how far it has spread. In the sample the blood vessels and lymph vessels showed no sign of cancer cells, so that was good. However cancer cells could still have reached lymph nodes and so they would also like to do a "sentinel node biopsy" In this test they inject radioactive fluid about where the cancers were and watch to see where it spreads. The lymph nodes it reaches first are located by the surgeon using a geiger counter (doesn't this sound like one of Masami's paintings?) and removed. They are immediately sent to be frozen and tested quickly for cancer cells. If any cancer is found in this rough procedure, they remove the other lymph nodes in the area. If none is found, they have minimized the # of nodes they have removed. Later, however, the nodes that have been removed are more thoroughly inspected and it is possible that cancer could be found and the other nodes would have to be removed in another operation. They have taken a chest xray to see if the cancer might have reached my lungs, and done blood work to see if it has reached my liver. Results are not in yet. We are also waiting on the test to see whether the sample's cancer was Estrogen receptive or not. The cancers both had a Nuclear grade of 1 for those of you who know what that is- that is not the same as a "Stage One" moniker. the stage # of my cancers has not been determined yet- to do that they need more results to see if and how far it might have spread. The type of treatment indicated by this aggregate of symptoms in the sample is lumpectomy with radiation. However, because I have microcalcifications scattered throughout my breasts, my doctor wants me to consider a mastectomy. The masectamy comes with chemotherapy rather than radiation. I feel that in many ways there isn't enough information yet to allow me to make such big decisions. I can understand the need for more surgery and I'm fairly certain the lumpectomy and sentinel node biopsy are warranted and relatively conservative. This will give us more information to know how best to proceed. Or where this journey is taking us next. That's the Reader's Digest version of where my thinking is at at the moment. Masami has been a huge help and has accompanied me to the hospital virtually every time, asking good questions, making good comments and sharing the driving, the stress and the weight of all the decisions. I can't ask for much more than that! It seems each of you are providing me support in a different way and I am getting all kinds of things I need. It gives me hope that if I do choose to endure a long treatment, we can somehow pull together all the resources we need to stay sane and functioning. For now we're taking one step at a time. Surgery is scheduled again this coming week, though if I don't feel good about it or need more time it can be postponed. Lots of love to everyone. Slowly I'm getting back to you individually, I apologize if you haven't heard from me directly- it's not that I don't appreciate you, because I truly do! Big hugs and kisses, August 10, 2004 Hi everyone, Well, it's been a week since I was diagnosed with breast cancer after what we can probably now call a partial lumpectomy. It's certainly been one of the more incredible weeks of my life. It would make a great movie. I'm sure everyone who watched it would be entertained, amused, laugh, cry and leave the theatre with lots to reflect upon. Anyone who wants the big screen rights to the story, just let me know! The reason we can probably call my last surgery a partial lumpectomy is that, surprise, there was a lump, it just didn't have a very firm edge so it couldn't be seen or felt except by mammography. And in fact it didn't look like a lump on the mammograms either, just like a general "goofy neighborhood" where something might be happening. So lesson number one is- women in their 40s and beyond- get your regular mammograms. My doctors are seeing lots and lots of women in their forties with breast cancer. So in this first surgery they took out a lump about the size of "a hotel bar of soap" (all quotes so far care of my surgeon.) In this hunk of tissue they found two cancers- one about 1/2" long and one just under 1/4" (sorry for the repetition of these details if you've heard it before maybe skip to the next paragraph). Both were invasive ductal carcinomas which is to say they started in the ducts and have already spread into the breast tissue. So the next plan of action involves seeing how far it has spread through various tests, and going back in to complete the lumpectomy as the cancers were near the edges of the samples and they want to make sure they get an area around the cancerous area that is cancer free- a clear margin- so that they feel confident they have gotten all of the cancer. They would like to follow this up with 6 weeks of radiation to kill any stray cancer cells. They would also like to do a "sentinel node biopsy" where they will remove some lymph nodes to see if the cancer has spread into the lymph system. I rejected the idea of mastectomy because I found the concept didn't stand up under scrutiny. First of all, I figured we can always do it later if necessary which you couldn't do the other way around. Second of all, it seemed fear-based and falsely scientific. It assumed that problems will arise later, and that there would be no other way to handle them. It also assumed that mastectomy would remove 100% of the breast tissue and therefore no breast cancer would return when these are in fact very optimistic odds (it's not like breast tissue is red states and non breast tissue is blue states. It's more like Illinois). While Western medicine is very good at treating/removing bad stuff that has already happened, I think its weakness often lays in assuming we have no control over what develops and changing things on our own. Many of you have reminded me, too, that surgeons are coming from the point of view of surgery- that's what they know and how they view the health world. I want to assure everyone that I am getting a high level of care at Kaiser in Hawaii. They have a breast department that has a lot of experience and works really well together. Many have been there more than 20 years. The Doctor/s who read my mammogram were very astute and I believe intuitive to pick anything up from it at all and they have followed up on it like gangbusters. Kaiser in Hawaii is not like Kaiser anywhere else, so if you have heard bad things about your local Kaiser, it won't necessarily apply here. I also am friends with a few Kaiser doctors not involved directly in my care for this problem. They check in on me when they can or I can call to talk or to find a friendly face at the hospital. It's been a huge blessing. In the end I can see the validity of the lumpectomy to remove the clear margin area and testing and have scheduled it for August 26th with the oncology (radiation/chemo if necessary) appointment Sept 15th when they have the lab results back. I need some time to complete my work for the Dallas show, let everything sink in, and give some alternative therapies or ideas a chance to work. August 26th allows me hopefully enough time to do all of that and still recover enough to fly to Dallas to help hang the show and attend the opening- not to mention have a really well deserved great time with The Albrittons, Adam, Young, Katie and anyone else who shows up to party! As many of you know, I have been working with a wonderful nutritionist for years and she has already changed my health and life in many positive ways. So as soon as the doctors got their due, I turned to her. Since I am already running a very tidy ship here, she didn't have too much to add to the program. I am not the typical cancer patient (my doctors have figured that one out already in different ways!) I do have to drop my last dietary vice- which is sugar (of all kinds- even fake ones). I had to increase some of my vitamins to cover the stress on my body from the drugs and surgery. Interestingly enough when I can't sleep or have panic attacks I'm to take extra of my multiple vitamins (which are geared towards healthy hearts.) It works! I never would have figured that out on my own and can now get a good night's sleep again. Other than that I am adding a homeopathic and some lymph massage to get that system up and draining as well as possible, and some enzymes (to break down) and a fiber source (pectin) which binds to cancer cells to help them get out of your system. My goal is to get any cancer cells that are in my lymph system to process through it and out so that the surgeon won't find cancer there and then won't want to remove any more than necessary. I'm very attached to my lymph nodes, I've found. I've already been thrilled with this therapy. I can feel the energy of these enzymes scavaging through my body like little PacMen gobbling up any bad cells that get in their way. I've added EFT- a tapping technique that Dr. Tom Kneavel taught me that seems to work on all kinds of problems. So the alternative therapies have been empowering and have brought lots of stuff to the surface and out already. The key, it seems, is to get at why you got cancer in the first place and change that. So that's the big mission here. Mark K. said it best when he told me about a friend who was diagnosed with breast cancer and given a year to live. She figured that if she was going to die in a year anyway, that she would do all the things she always wanted to do. And she did. A year later, the doctors could find no evidence of cancer. Of course I feel like I live a life that's already very much like everything I've always wanted to do, so I'll really have to work on changing things for the better, but there are some more and less obvious signs of things out of balance as there always is. And there is always more to learn. My conflict seems to be summed up in my to do list for the next two weeks which includes many things to complete for my show and time enough to focus on and heal this problem. How exactly do those things go together? It has been a surreal week in many ways, remniscient of my time in New York City. (For those of you who don't know what that means, I'd recommend the movie "After Hours" as perhaps the most accurate -and funny- NYC movie around.) To call some of the things that happened serendipity seems almost like an understatement. It's pretty glaringly obvious that I'm here at this space and time with this disease for a reason. At some point I was away from home (walking) and hungry (because I'd gotten behind schedule having ran into a neighbor I rarely see who is now working for the Cancer Research Institute). I looked down and there was a tangerine laying on the ground not far from it's walled in tree. It was too much of a coincidence, I picked it up and it looked fresh enough. I was a little terrified when my thumb flew all the way through the center of it as I tried to peel the skin, but when I caught my breath and examined it, it simply had a thumb-sized center space around which was delicious fruit. I want to again thank you all. Everyone has provided me with just the right kind of support whatever it was and it was wonderfully eclectic and absolutely perfect however small or large. I ask you, too, if you are in that position, to take care of those who are also very affected by this, primarily Masami and my parents. And get your mammograms girls. If they say you are too young, tell them you want it for a baseline. Big hugs and kisses to everyone. I 'm putting my virtual arms around you one and all! Lots of love, August 22, 2004 Hi all, Wow, I had a couple weeks away from the hospital and it sure felt good. I've been hanging out at home giving my new vitamin/diet routine a chance to work, sitting around topless in my studio painting my breasts to commemorate them- a great thing to do in August, by the way! I've been trying to finish up what I can for our Dallas show but primarily taking care of myself and preparing myself for the next surgery this coming Thursday. When I do go out I wear some camisole or other in a case of flaunt it while I still have it. Kind of fun since I don't usually wear that kind of thing. Some more test results are in and overall it looks good. They haven't found that the cancer has spread in the few places they looked (bones, chest). They are going to take some lymph nodes out this surgery to see if any cancer is in them. I bargained the doctor down to only taking 1-2 nodes out, so we'll see what happens. They give me some radioactive shot to find the nodes most likely to have cancer in them. The surgeon is then guided there with a geiger counter. It also turned out that the cancer cells did have estrogen receptors- in a very high number. That, according to my inimitable doctor is "the best kind of breast cancer to have." It means that it's still young and is affected by hormones. I think the doctors like this because it means that they can manipulate the hormones in various ways (ie, tamoxifin) to control the cancer. It gives them a bigger range of treatment options in the long run. For those of you who know the terms, my Her-2 neu was a low number, which is also a good sign. So my basic problem is the invasive nature of the cancer and the fact that it was relatively not so small- one at 1.8 cm. So I'm sort of borderline on treatment recommendations because of those two things. Hopefully after the next pieces of me have been donated to the hospital, they will have a more rounded idea of where I'm at with this and where they think I should go. I'm hoping to give them some more surprises. I'm already a standout among their patients. Can you believe no on ever wanted to photograph their biopsy before me?! Hey, I'm a visual girl with a poor visual memory. I had a pre op appt yesterday and after my long bargaining session with my surgeon (I refused to sign off on "possible axillary node removal" which is where they strip essentially all the lymph nodes in your armpit.) I found a wonderful doctor in anesthesia this time who was shocked by my story of last time and promised to check on me and assured me I will have a much better experience with his department this time around. Because I didn't agree to the "possible axillary" I was also able to ask if they would start with a local anesthesia with sedation. I did very well afterwards with this last time (while everyone around me was nauseated from their anesthesias) so I hope that will be enough this time as well. The only side effect was that it made me very chatty at the end of the surgery. It was like I was at a party. It didn't bother me at all, but I don't want to distract the surgeon, either! I told her she doesn't have to answer me this time and I'll understand (evidently I wasn't as intelligible as I thought I was- can you imagine?) I think they should just designate someone to talk to me. Maybe I'll pop that in the suggestion box. It would be a good volunteer position- would you volunteer to talk to very happy chatty drugged out folks during surgery? With Aunt Carla's help I also got my take home drug changed to codeine since I've always done fine with that. I think the doc had thought of the other drug because it works for her and she thought it was less similar to the one I reacted to last time. So the other good news is that the rather unattractive scar I acquired last surgery with be cut away this time. I'll be left with a new, larger and hopefully improved looking scar. Seems like it will sit on my breast like a dart does in a blouse, only at 2:00 rather than 3:00. Let's hope this third scar is a charm (the first one is small and will remain- the needle biopsy one). I'm asymetrical now, but it will be more pronounced after this time as they are removing quite a bit altogether. I'm not sure what kind of clothes I'll be able to wear afterwards. At some point one of you sewing wizzes might help me by figuring out a form for a little extra padding I could put in one side of my bra. It will be like Jr. High School all over again. So surgery is scheduled for this Thursday August 26th. I hit the radioactivity part first at 8:45- lay there until it spreads into my lymph nodes (a variable amount of time) and then am scheduled for surgery at 10:15. Now I know they double book the OR, so it might depend on how fast I'm ready whether or not I actually make that time in (last time I didn't). Jackie will wait with Masami. This time we start a little later (good for better sleeping) and will hopefully be a little less stressed out since we've done it before. I wanted to thank everyone for all the support. It's been most wonderful and eclectic. Sorry I haven't been communicating too much the last couple of weeks. I really needed to focus on myself and my healing and no one can really do that part for you. My mother is doing a women's healing circle for me on Sunday, August 29th. If you would like to join either in person or in spirit, she can email the invitation. I'm so grateful for the cards and letters and prayer and masses and just everything. I have gotten some cards with really wacky addresses on them- but I got them so it's a great tribute to our post office. I'm only going to point out that I'm Lynda because there is a Linda Hess who lives not far from me and while I don't deny her any extra prayers, I just want to make sure the good vibes are going where they are intended to go! Boy, I just can't write a short update can I? Sorry about that. We're doing fine, I feel healthy and ready for this next step. My parents remain a phone call away for all the love and support one could ask for. Masami continues to be wonderful even though the pressure for our show deadline is on on top of it all, and I'll be out of his support system in a few days and I'm not at full energy now. Still, I'm sure it will somehow work out. Each day reminds me of what my priorities need to be. Cancer is a great clarifier. Love to everyone, August 27, 2004 Hi everyone, Surgery went great yesterday. It was sort of like my favorite kind of party- everyone was friendly and upbeat and wore name tags! Luckily everyone was also competent and focused. Some people remembered me from the last surgery 5 weeks ago. Other than 2 doctors and some work staff in the Surgicenter, no one was, however the same. I started in Nuclear medicine and it was packed. The whole place was busy. Evidently this is a more typical day than last time when there were only half a dozen surgery patients. Somehow it worked better, though. This time instead of standing awkwardly hugging a frozen mammogram machine, I was ushered to a real bed like table where I could lay down with a pillow and I was offered blankets and a heating pad for my breast. I'd even been told to wear two gowns (one forward and one backward) so I could walk modestly through the hallways. Once Amanda got me cozy on the bed she was off to find the doctor- I told her to take her time, it was probably the most comfortable I'd ever been in that cold hospital. She brought Dr. Shibuya who had done my needle biopsy. I asked if she remembered me as that's probably been 2 months ago now. She said, oh yes, you're the one who took the photos! I told you I had a reputation.
With the gamma detector- which looked like a a giant hairdryer- they located one sentinel node and I left with a huge black marker X in my armpit. I bundled back up in my hooded sweatshirt while I could and managed to hold on to most of my body heat, though Masami and Jackie thought I looked hysterical. In surgicenter I had to get less modest, but managed to get a fun hat (I have pictures). Jackie's reiki hands warmed mine up as well as sending me wonderful energy. My parents called Jackie's cell phone, so it was great to talk to them at that point. I was told surgery was 10:15, but it was scheduled there for 11:30. I think I finally got in around noon and Jackie made it to work on time.
The anesthesiologists both talked to me and knew I was a minimalist and had devised some ideas on how to approach it all, so even if I needed a general it wouldn't be too strong. I was told to tell them of anything I needed- pain relief, a nose scratched, anything. Ann Waugh told me I could talk to her the whole time since I didn't want to distract the doctor and boy did I talk. I think I slept a little at first but I did get a nose scratch or two, and a even bit of a foot massage on request. Although at the end I could feel them sewing me up pretty clearly, I thought I'd made it that far, I didn't want to get a big hit of stuff now so I kept saying- I felt that, but it was fine, it went quick. By the recovery room I was very awake and alert and ready to drink! I asked for water and the girl offered me POG of all things! (Passion Orange Guava is a very local drink- sort of like Fruit punch- all sugar) I said water would be just fine. Boy Post op was wall to wall so I was there awhile awaiting space in the sugicenter. But I had a great attendant- Lisa- who talked to me most of the time. The local wore off fast so I got a little morphine and some codiene with Tylenol for the pain. Best part of that is that the latter has to be taken with food- so they offered me food! Well, crackers, which I don't eat, so they went to get Masami who had the snack bag (and my glasses) so I got to see him and then got to see everything around me while I ate my banana. He told me what the doctor had told him- good news about my lymph nodes being cancer-free. While we ate it turned out our friend Dr. Sarah had been working with a patient right across from me (no dividers here), but of course I couldn't see that far and now she noticed us. It was great to see her shining face. I love the vibe of people who love their work! Masami couldn't stay, but we were reunited soon in surgicenter. Again I had a great attendant, Michelle, which was a funny introduction- "Lynda, Michelle" as it was my given name. Before long I peed and walked- meeting the requirements to be discharged. Masami went to get the car and Michelle fought off competitors (well, at least one) to wheel me downstairs. So no waiting this time. I had a lot of energy and clarity last night which was wonderful. I was so happy not to feel drugged out. I slept very well and this morning didn't feel the need for any pain killers at all. I'm looking forward now to Masami coming home so we can take the bandage off and I can get in the shower. Every minute seems to bring me a little less pain, though and a little more pain-free mobility. This morning I could only type one handed, but now I can type pain-free. So I think barring unanticipated setbacks, that I should be recovered much faster this time around and ready to hit Dallas on Sept. 6th. I called Dr. Yee this morning to hear straight from her what happened and she said that she actually took 3 lymph nodes out because when she pulled one, they came out in a chain. The frozen section they did during surgery was benign, but they will be examined more thoroughly before I see her again, as will the rest of the breast material she took out. So that was best case scenario, really. Hopefully test results will be in by the time I see her next week as the oncologist appt. isn't until Sept. 15th- after our Dallas trip. Friends have been so wonderfully helpful. Don and Pam came over the day before surgery to help us take down my large painting and uncrate and move one of Masami's screens. We were so thrilled to have that done that we both felt a rush of energy and relief afterwards. Pam also dropped off some delicious premade dinners for us and we used them first for Masami to take a bento to the hospital as the food there is so bad. Wei came on Monday to help Masami shoot his paintings, which was a true blessing because I just wasn't physically up to it at that point and didn't want to get sick before surgery. Masami finished sending his work to Carleton college and started sending things to Dallas, so things are moving and swirling all around but it all looks more doable now thanks to everyone's efforts. I felt a lightness after surgery that went beyond just relief at getting over the stress of it that was just wonderful. It was like I did the right thing and everything just clicked into place. Masami has really gotten good at taking care of me through all of these new situations and I am so grateful to him. I'm sure the next 10 days will be a challenge as there are so many things still to do, but I have confidence that somehow it will all work out, and that's a great antidote for stress. My parents have been wonderful at keeping it all together and amazingly also keeping so many people informed. Even far away, they are a great source of strength. I look forward to the healing circle on Sunday. I will lay here and feel very connected to everyone. If you haven't received the details, my mom can email them to you. Thanks for all the cards and notes, it's a wonderful feeling to have a supportive web of connections with people I love and care about. Lots of love to each and every one of you, September 24, 2004 Hi everyone, Well, Masami and I took the advice of one of our little advisors and as we left for Texas decided to escape for an extra week for a real vacation. Texas was fun, but a lot of work, which continued our theme at home, so I worked on the internet for a while and came up with an apartment in Florence for a week. The day after our opening we left for Italy and just got back to Honolulu two days ago. We had a great time, ate wonderful food, saw wonderful art, walked everywhere, didn't work too hard, learned a lot, did things we'd done there before and found wonderful new discoveries. We helped celebrate David's 500th birthday (and view his spanking new birthday suit! He's more amazing than ever.) I decided Michaelangelo should be a saint. He could be the patron saint of gay people (God knows they need some support in the Church) and of women with odd shaped breasts. I'm going to try and be his first miracle! Italy was of course a great place to break one's diet- though I hung in there for a few days eventually I felt recovered enough to indulge in pasta, and a few days later, when it broke 80 (at least) the siren call of fruity gelato just had to be answered. Meanwhile I found real depth and wonderful flavors in Italian food. It's kind of nice to branch out. So I did very well, ate heartily (and often) had no obvious side effects and weighed in on the low end of my scale at the doctor today to boot! So yes, back to reality in Hawaii. Two days home, two doctors seen (Masami hit the dentist for a few hours yesterday). Today was my radiology oncologist. She was very nice, a very different personality from my surgeon, and had a resident with her. Although they almost tickled me senseless feeling up my lymph nodes, they made up for it with a team breast exam. I must admit I've never had a doctor appt. quite like that one, nor have I had anyone ever say to me, "Is it ok if Amy feels your breast too?" They let me get dressed and move into a nice conference type room for the consultation (Masami was there throughout and had great input as usual). I did my research last night and had a lot of questions. A lot about radiology surprised me- mostly that it does not increase survival (5 year survival rate for my stage of cancer is 85% in case you're into the stats). All radiation treatment does is reduce the rate of local recurrence. A lumpectomy (which I had) without radiation has a 20-40% (This Dr. used the figure 35%) relapse rate, while with radiation it is 5-10% (she said 10%). So using just one set of numbers this means that 65 out of every 100 women get radiation and don't need it. The number increases when you factor in the women who would have a relapse either way- add another ten. So 75 out of 100 women get radiation treatments which do them no favor at all. And remember that the survival rate is not increased for anyone, whether there is a recurrence or not. This kind of shocked me. However, radiation is standard procedure with lumpectomy. It is standard because (and I realize the discrepancy here) if a treatment helps 30% or more women they recommend it for all women. Because it is standard procedure the doctor MUST recommend it or be liable for malpractice. I find this all rather mindboggling (and another reason I could never be a doctor). Now of course everyone would like to be able to know which
women As for me, I don't have to make a decision until after I talk to the other oncologist and see if he recommends chemotherapy (and/or drugs). If we go down that path it is done before radiation treatments. Otherwise, if I decide to do radiation alone evidently I am physically ready (my breast is healing well) and I could theoretically start at any time. One thing I learned from our last minute trip was that airfares are high at the last minute, so we booked our next trip already and I will see the next oncologist after our travels to San Francisco, San Jose and Minneapolis (10 days total). So as you can imagine with these few days at home we're crazy busy getting caught up and preparing for the future not to mention the present! Somehow in all my check writing to Kaiser last month to cover all these bills and get to my deductible I evidently forgot to pay my dues! Luckily they are giving me another chance, but stuff like this is why you need to catch up once in a while. I do see my surgeon sometime next week before we leave, and if I have time I'll write another note. I wanted to send a picture or two but just couldn't get it together in time tonight. The Dallas show looked great with the four of us- Masami's son Adam and daughter-in-law Young. We all had a grand time at the opening enjoying the Texas welcome and the fabulous hospitality of the gorgeous Albritton family. We got to see some old friends and meet some new ones and then we were all off in different directions once again. It's funny to return to two bare studios, I wager we're both ready to paint again and will fit it in somewhere in the less than a week ahead that we have. Love to everyone, thanks again for all the good thoughts and wishes and someday I do hope to have time to thank you each in person! For now accept a gang hug of thanks. XOXOXO Aloha, October 17-19, 2004 Hello everyone, We've been home from our last trip (San Francisco and Carleton College in Minnesota) for almost a week now and are still getting settled, catching our collective breath and getting caught up on the past months' overload. Yes, the phone lines are now open. We are still busy, but not like before. Artwise, this is the last day of our family show in Dallas, I am in a show that opens here this afternoon at Blaisdale in the Pikake Room- it is only a 5 day show so catch it if you can. It is the finale of the show Hawaii artists did in Japan with the Nikakai Group. Now the Nikakai artists are showing with us in Honolulu. I am also finally expecting catalogs of my artwork to arrive in the coming week. It will probably take me a while to get them out to people, so if you would like one (or more) sooner, it would be a great help if you can send $10 per catalog with $5 for shipping (this can probably cover up to 3) and a mailing label. That would greatly expedite things on this end! It is a 24 page soft bound catalog with lots of images of my work, an intro by me and an essay on my work by a great local art writer, Marcia Morse. If you don't have my home address you can send a check to: PO Box 870 We had a wonderful but busy time on our trip. San Francisco was full of friends and parties from the formal gala for the 35th anniversary show at the San Jose Museum of Art (in which Masami is represented) to casual get togethers with our good friends Linda and Jeff Fong and assorted friends connected with the gallery. Minnesota also held old friends Mark Loftstrom, Brian and Aki Pawlowski who joined us there, and new friend Laurel Bradley who curated Masami's works on paper show at the Carleton gallery. One morning Masami ran into a Carleton alumni who was good friends (and a neighbor of) a woman who posed for one of his early paintings (which was in the show). Masami gave a talk, a lecture (with me) and talked to students while we were there enjoying the height of autumn colors and perfect fall weather. Home held my last doctor's appointment- with the chemotherapy oncologist. I studied the whole day and a half leading up to the Tues. appt, realizing that between chemotherapy and hormone therapy (Tamoxifen) there was more than I thought to get my brain around. The doctor, however, didn't exactly see things that way. The best way to communicate this appointment is for you to imagine the scene in The Wizard of Oz where Dorothy (that would be me, though, perhaps not as naive) first met the Wizard. Remember the giant head puffing steam and making frightening noises with a thundering voice of power and fear. That would be the doctor. Luckily we also had Masami in the role of Toto. Although Masami said he watched my face turn blue at first reaction to the doc saying, essentially that if I didn't do what he said I would die, I did eventually get to my list of questions and to give me a break, Masami came up with his own which was when he pulled back the curtain to reveal the man behind it at the controls. The upshot is that with my cancer #s and no further treatment, 15% of women have a recurrence (this is systemic now, not local- in other words this is cancer coming back somewhere it hasn't been yet- either the other breast or somewhere else in your body. Chemotherapy does not deal with local recurrence- only radiation does that (see my last letter). So out of those 15% who have a recurrence, if a woman does chemotherapy and five years of hormone therapy (tamoxifen) the chance of recurrence drops to 6%. (the numbers are slightly less for one or the other therapy alone). What my brilliant partner asked, however, is not about recurrence rates, but about survival rates. The doctor got agitated (just like the movie) but pulled up those chart results on the computer. Turns out that without further treatment the 5 year survival rate is 99% (less one for non breast cancer related death)- in other words 1 death from breast cancer out of 100 women with no further treatment. With both treatments (chemo and 5 years of hormones) the death rate drops to .6% (compared to 1% with no treatment!). To be honest I thought the statistics on the help radiation gives were pretty low (25% local recurrence prevented, no change in survival rates) but these are both much more drastic treatments with much lower odds of helpfulness. Keep in mind that these are adjusted for my age, and specifics of my cancer (lymph node neg., nuclear grade 1, size- under 2 cm). Odds may be better for women in different situations, at least I hope they are. It seems the reason they like to do chemo is that they just don't know if anything is there or not right now and that down the line they have no way of knowing if anything is there or not, but by the time they can detect anything it is larger or more of a problem because they can't detect anything early with current tests. So it's a proactive thing, sort of like the Iraq war. But I'm sure you can all figure out the political metaphors. Luckily, also like the Wizard of Oz, once I told the doctor that I was not going to do his version of treatment, he did soften up. He finally opened my chart, for one, and gave me some ideas of what I should look for in the way of detecting whether or not cancer may be elsewhere in my body. He also examined me and we determined that I was pretty darn healthy. He decided that someone should look after me and scheduled a follow up in three months. There are some blood tests they can do besides the ones they have already done (liver and chest xray) so I will do blood work before I see him. There don't seem to be other tests that can show anything. Kaiser thinks a bone scan is not worth it with my early stage cancer unless I have a specific problem or pain. Evidently this is because the bone scan picks things up that aren't just cancer related, for instance it would pick up arthritis related problems. No one seems to think I need a mammogram for another year. I think this is because the scar tissue in my breast will change a lot over that time period. I certainly have been thinking about treatment options from the beginning and doing it constantly since the diagnosis. I wanted to take each of them in turn, do my research, talk to doctors who specialized in the options and make my decisions. Each post surgery option has surprised me upon further investigation. While I thought that the potential side effects and other "bad parts" would be a big factor in my decision, I was surprised to find that I didn't even have to get that far in my thinking. They just didn't feel right for me, and if you are into odds, which I am not, the odds are shockingly high that they really don't help many women, though they are recommended for virtually all. One of my first impressions about this process was that statistics are a false science, in fact I feel they are simply a "scientific" tool to substitute for intuition. And that a poor substitute. I look at statistics knowing that I could be on either side of the equation, so I don't feel they are particularly helpful in decision making. While each doctor has lamented that they simply have no way of knowing which women are in, say the 91% or the 9% category and therefore must treat everyone as if they are the 9% they can ostensibly help, I don't find that thinking particularly stands up to scrutiny either. So it must be left for each woman to decide. And my guess is that most will decide with their own intuition based on their own experience with their own bodies (which the doctors have certainly not figured in) and their own desire to pursue their own healing wherever it leads. When The Wizard responded to my statement that I would do neither radiation, chemotherapy or hormones, he said "Then you are doing nothing?" That is far from the truth, I merely said " I am doing nothing more in your 'church' at this time." My path is open to go wherever it leads me, and it may lead me right back to his office, who knows. I have enough experience with my own body and my own healing to have faith that whatever I need will be given to me. In some ways it would be easier if I could just do the three therapies and I could feel it was over. I certainly can't judge anyone who makes that decision. I just don't think my life is leading me in that direction. I see cancer as my teacher, not my enemy. I have already learned volumes from it and am sure I will continue to learn from it as I consciously work to keep my body cancer free. It certainly now leads me to being ever more in touch with my body which is always interesting. My breasts are now "online" in my consciousness and they have quite a lot to say! Who would have thought?! Physically, I am still recovering from the surgery and after questioning all my docs about lingering arm pain and numbness finally had a breakthrough with my nutritionist who told me how to give my arm and breast a lymph massage in an effort to reestablish the normal flow of lymph fluid that was interrupted by the cutting and removal of the lymph nodes. My pain is now gone. So I feel good. I am going to change surgeons, but will check back in with a surgeon next month and the oncologist in 3. I feel very good about my decision. I am confident it was not based on fear, because no good decision can be based on fear. But oh, that takes us back to politics and popular culture, doesn't it? For now I won't go there, but will send everyone my love and thanks again for all the wonderful support. I'm hoping to get my letters and some photos up on our website. I'll let you know when we get that far. Lots of love, |
