Going Out In Public

I have found myself very reluctant to go out in public in the past week or so. I've thought about this in the last day or so and I think I know why.

The neurosurgeon shaved my head last week - to even out my hair - so I'm back to wearing hats.

I also wear a compression sleeve on my left arm.

Then, there's unicorn boob (chest tumor) that sticks out about 1 to 1.5 inches near the center of my chest - it sticks out father than the TRAM flap.

And, then, there's the diarrhea that seems worse in the morning. As I type, my fingers are a bit shaky.

Finally, I have been preoccupied since Friday about skin mets - I think that the areas that aren't healing have cancer cells in them preventing growth. So, I've been doing a little research trying to figure out what I can do post WBR (whole brain radiation) to get that under control as I want the wounds to heal.

I am really sick and tired of wounds. I have two of them right now.

For some reason, the compression wrap seems to bring the most questions from strangers. With my friends and colleagues, I just have to say, "I'm wearing this so that I can decrease the lyphedema". But with strangers, it invites more questions about why I have lymphedema. On Friday, the clerk at Freddies then went on to tell about her cancer scare and how she's got to go in for a biopsy soon - it wasn't breast, but another organ. I don't want to talk about or comfort someone else right now. I'm too preoccupied about what's going to have to happen next.

My dad has told me twice not to worry too much into the future - just get through this week's surgery and the WBR beginning next week. But I sorta feel like I need to look up options so I can bring them to Dr. K on Wednesday. I want to be prepared for the next leg.

I am so preoccupied that I haven't felt like working on mosaics or the blogger analysis. I am also worried about getting another infection on the chest tumor site after surgery - I am to shower with Hibiclens Wed evening and Thurs morning, but I can't shower because of the wound in my armpit. So, I need to talk to a nurse about how to adequately clean (because while I showered the night before the April 1 surgery - or that morning, I only did it once and I don't recall really using that stuff very much, so I'm afraid that's why I ended up with such a huge infection afterwards). The chest tumor also bleeds when I change the dressing, so I'm worried about needing a transfusion.

So, I guess I'm full of anxiety and worry. I will call the surgeon today about making sure they are prepared for a transfusion. I will call the admitting nurse about showering with Hibiclens. I need to call Disability and see what is going on with my claim, I need to change an appointment and preregister for the surgery.

Once I make all these phone calls, I hope I can settle down and do something more positive and productive.

Oh, one thing I found about the skin mets - I will probably have to do a taxane. I found a bulletin board where someone posted a Japanese study that included a drug that I've not heard of but is an estrogen blocker with paclitaxel. I think there were only four treatments of the latter and 120 days of pills with the former (called toremedine, I think), but in the case they treated, the skin mets disappeared and stayed away from the woman for two years as of the writing of the article.

Writing about it all helps. I don't mind visitors coming to visit me at home. I just don't feel like going out in public and talking to complete strangers about what's going on with me. Maybe once unicorn boob is removed, I'll feel more up to doing something outside the home.

Chest Tumor

In my sleepless night last night, I thought about writing about this chest tumor, too, but got too tired.

I noticed that it seemed bigger over the winter and it seemed to really start growing in February. I am not sure when, but it was about 2cm long. Now, it's about 8cm long x 6cm wide. But I'm counting the curve of the tumor going down to the skin, too, as part of the length and width. If I were to just measure the "top" part (not including the sides where it meets my chest bone), it might only be 6-7cm long x 5cm wide. It sticks up about a 1cm, in other words, and that centimeter enters into the measurement.

I remember thinking awhile ago that it was my body's way to push the cancer out of my system. And, it seems to me, but memory isn't great, that it started moving up and out in February, when we on Mt. Kilaeua, the volcano, in Hawaii. (See, there's a great metaphor - my tumor is erupting from my body - getting its start when I was on the volcano.)

So, I'm trying to think of this thing as my body trying to remove the last vestiges of anger and resentment I may still have over my life. It's a physical manifestation of what is holding me back from stable disease status.

I started visualizing last night that what needs to happen is the herbs and aloe gel and turmeric and everything else, creating a pathway under the skin to begin remove dead and dying cancer cells. It just occurred to me that maybe I should visualize underground lava tubes taking up these cells and washing them away in my body.

You see, I have to visualize the creation of lava tubes, too, because the skin and tissue there has been so damaged and compromised from radiation and surgery. This means that the lymphatic and blood vessel system is scarred, so chemotherapy and targeted treatments can't make their way effectively to the tumor to kill it.

My treatment options for this damn lump are limited because of the compromised tissue. I can't have it radiated again because it has had its life time dose of radiation. Surgery could take out the lump, but it couldn't take out the whole lump, so it would leave a big wound there that would be hard to heal because cancer retards healing. The only thing they suggest is to find a chemotherapy regimen that might work to shrink the tumor. So, I continue with Herceptin and Zometa for that - and I want to add Tykerb to the mix.

That is why I tend to think the only thing that might be effective is a topical treatment - like an ointment to kill the tumor from the skin side, not the lymph/blood side. That is why I've been using this turmeric/mushroom/melatonin concoction on it. I'm going to let the wound care nurse look at it and see what she says. I've been trying to visualize that this concoction is creating a healthy pathway (i.e., lava tubes) to clear away dead cancer cells. And also that the concoction is killing the cancer. It doesn't look like it's grown, actually. Now it needs to shrink. It occurred to me that the tissue underneath was so damaged that maybe it couldn't take away dead cancer cells, so hence the visualization. Maybe the concoction can create a healthy escape hatch so the damn thing can shrink and go away.

I'll keep you posted on this eruption . . .

UPDATE: I saw the wound care nurse who looked at that tumor today. There's a circular area, about 1cm+ round, that's white and superficial. She thought that it might be necrotic tissue. It's not ready to be debrided yet. But I was happy to hear "necrotic", which means it's dying. Right now, I just want the damn thing to die and go away. I also know, however, that it might mean that I end up with a wound there that never heals. I'll deal with that later . . .

Visits Today

I saw both the wound care nurse and the surgeon today. They both agree with me that they feel that the whole area under my armpit is not improving with this cycle of Abraxane.

My wound care nurse tried to remove what looked like it might be slough, or dead tissue, from the deep part of the wound. However, when she tried, it would start bleeding. If it was dead tissue, it wouldn't bleed. It looks unusual, too, so she suspects that it's cancer.

The surgeon looks at the wound and he felt that the whole area - particularly in the back of the arm where most of the satellite lesions are - felt hard again, meaning that there is probably cancer throughout the area.

Not the greatest news one wants to hear. On the other hand, I'm glad that we're all monitoring the situation like we are so we can do something about sooner rather than later.

At the moment, here's my plan: first, talk to Dr. K and ask him to talk to Dr. D at UW about maybe prescribing Imiquomod for the skin mets. I see Dr. K next Monday and will broach the topic with him.

If he'd rather go another route, then it looks like surgery will be the next consideration.

I tend to think that since Abraxane has knocked out those lovely Herminator-2 cells, I no longer have both working together to knock out the cancer. So, it makes me wonder again if I should, perhaps, go off Abraxane for a few weeks and allow my body to regenerate Herminator-2 cells and then go back on it.

A Treatment Plateau?

In the last week or so, I began to think that I've reached a treatment plateau. I say this because in the last couple of weeks I have had some new satellite lesions that have cropped up around the wound and they don't seem to be shrinking or disappearing. In fact, a couple seem bigger, but that may be due to inflammation (which can be a good thing - a sign that my immune system is sending Herminator-2 cells there to do battle). I think it is inflammation because my whole shoulder joint is feeling tight and swollen and is becoming more achey. But maybe the satellite lesions are bigger because they are growing - we just don't know for sure. In the end, the dramatic changes and reductions in the tumors that I had in October and into November seem to be slowing down. Darnit!

I think I'm reaching a plateau with Abraxane because I don't have as many white blood cells - the total numbers of white blood cells is about 1/3 (or a bit more) than what they were before I started Abraxane. So there are less Herminator-2 cells running around killing the cancer cells. I had one idea which I brought to my doc's office, which was to let me go off Abraxane for a few weeks and allow the Herminator-2 cells to grow again. But as my oncologist's nurse practitioner staed, we don't know that that would work, so I risk tumor progression whereas we do know Abraxane is working at some level.

Then, to top it off, my side effects, which were relatively minor to begin with (digestive issues, acne) seem to be getting worse. The fatigue is about the same and of course I'm still bald. But the constipation seems to be lasting longer, and over the last week, my kidneys were achey, which tells me that my body is finding harder to flush the toxic chemicals out of my body. The herbs are helping - my acupuncturist put me on a new one last week, but it took me a couple of days to figure out the best way to take it. She said not to take it in capsule form, but to either swallow the powder with warm water or to steep it as a tea over night. By the time I got into a new habit with steeping it overnight, I was constipated. My face has also been breaking out quite consistently in the last week.

So, I'm already thinking of what to do next or one option is to add something to my treatment regimen in addition to the Abraxane. The UW Tumor Vaccine Group has another clinical trial for skin mets, which combines Abraxane with Imiquomod, which is an ointment that has been used with melanoma (I think). I don't want to travel to Seattle, however. I would have to be in Seattle for the first treatment for at least a week. I can't afford that right now.

Dr. D. from UW did say that Dr. K would be able to administer Imiquomod here as it is an FDA approved drug. I see Dr. K next week, so my plan is to have him call Dr. D and see if maybe I could add this to my regimen. That is, of course, if he agrees that the satellite lesions are not disappearing.

I also see the surgeon and the wound care nurse tomorrow. I will say that the overall wound is healing, slowly but surely, it's just the satellite tumors that are worrying me. Maybe the surgeon or the nurse have some ideas . . .

It could be that I'm already becoming tired of Abraxane. I am starting to get tired of being bald and the acne and the digestive issues are annoying This Friday, I will have finished three cycles of Abraxane. I will be halfway done. I think the weekly schlep to get an infusion is getting to me - even though the nurses are great. But I get tired, both literally and figuratively, of not sleeping. I think that as long as I had such an impressive response, the side effects seemed minimal, but as they get a little bit worse and I'm not responding like I was, it's getting old.

I also admit that the work stress has been greater lately - trying to put in an application for release time, a grant proposal, and changes to an article, not to mention teaching the class, grading papers, and now recommendation letters, etc. - it's been a really busy few weeks. Productive, but stressful because of deadlines. I wanted to get another grant proposal out this week, but it's not working out that way. I think it's time to lower my expectations and take a break for a couple of weeks. The point is that the work stress may be contributing to my decreased response with Abraxane.

And, there's financial stress. I keep getting statements from Samaritan Health Services - even though I've met my out-of-pocket maximum, their billing office has consistently forgotten to post an insurance adjustment on my account, so each month, I get bills for $100 or $200 or $300. This means I have to call them, tell them they are missing an adjustment, and verify that I don't owe them money. To top it off, I had my teeth cleaned a few weeks ago; usually insurance pays for this, but it turns out that my dental insurance will only pay a maximum amount each year. I reached that maximum after my crown this summer, so after the fact, I found out that I owed $200 for a teeth cleaning. So, I paid that bill, which meant less for Christmas spending. I also admit to spending more than intended for Christmas . . . so money is tight. I haven't been extravagant. I bought some presents for the Giving Tree tags. I also went to the coast for the night last weekend. I didn't spend much there, but I guess it all adds up. A couple of months ago, I think I figured out that I've spent about $5,000 in medical expenses this year. My $1,000 out of pocket, plus the trips to Seattle (even though I got about $1500 in donations, I probably spent maybe an additional $750 or so), plus over $1,000 in dental, plus acupuncture, wound care dressings, herbs and supplements and mileage. It all adds up.

Okay, enough whining. Time to live in the moment and enjoy the holiday. Let go of stress. I need my immune system to be working at an optimal level. Stress doesn't help!

Biopsy Results

Dr. K. did a biopsy on Tuesday and his office  called with the results of it today.  The news?  The nodule he removed from under the lymph nodes was positive for cancer.

My interpretation is that the cancer is trying to run away from the t-cells in the lymph nodes.  So, it ran away to the skin.

This is what I wrote on Facebook earlier today:  "We, meaning my docs and I, knew that that cancer was in the lymph nodes. The cancer migrated (I.e., ran away from the t -cells in the nodes) to the skin area, so it wasn't much of a surprise. The UW doctor said that I may be eligible for another trial, which uses a topical treatment plus Abraxane. They are having "remarkable" results with that, apparently. I will find out later what they decide. I am just tired if this "third boob" under my armpit!"

So, now it needs to be treated. But Dr. K.  is going to talk to Dr. D. from UW about what the next step will be.  I will post when I know more!

Controlled Anger and the Stages of Grief

You know Elizabeth Kubler-Ross's Five Stages of Grief? Well, I think I'm going through them. The stages are, in no particular order: denial, depression, anger, bargaining and acceptance. I feel like I'm losing control - that the cancer is doing what it will and even though I'm trying to do whatever I can, it feels like it's not making a difference.

I was still pretty sad and depressed yesterday, although I did get out there and attended a couple of social events. I had to force myself to go because I knew it would be good for me and it was. Last night, though, I still felt sad and a sense of despair was there. This was because 1) yesterday, I found some more nodules of skin mets in the area under my implant that I didn't know was there; 2) my big toe still protests getting into shoes (I injured my big left toe in a softball game a month ago) and I found that when I do try to run fast and then stop, I can feel it, so then I don't feel like I should run as hard playing softball so then I can't play as well as I know I can; and 3) even though it only got to 75 yesterday, I felt SOO hot. It was kinda crappy how quickly hot and uncomfortable I felt. I've noticed since I've been on Xeloda and Tykerb, that when I do get hot enough to sweat, my sweat feels prickly - like a bunch of little needles. So, I cried during the game. I just feel frustrated and have this feeling of "when is it going to end?" Also, I think the skin under the implant is already feeling the effects of radiation - it felt a bit like a sunburn on Saturday. Sigh.

I did some bargaining with Scott late last week . . . I told him that I like his support to get me over this hump, then I would try not to bother him as much any more. I don't think I ever felt in denial - it was more like a "why can't I get a break from all this crap?"

Anyway, this morning, I felt like I should color the mandala. I don't particularly like this month's MOTM (www.maiahcreations.com/MOTM/) because it seemed kinda sloppy and was asymmetrical. I didn't feel like coloring it. See the June Mandala. Then, I decided that I could add to it and make it symmetrical. Then, I decided to color it in angry colors. Since I started coloring it, I'm beginning to work up a full head of steam of anger.



I am angry at finding more skin mets.
I am angry that the weather isn't nicer and it's cool (about 60) and cloudy.
I am angry that I'm not able to play softball like I want to.
I am angry that I can't live a "normal" life like my friends and colleagues.
I am angry that I have to go to radiation everyday.
I am angry that I don't have a partner.
I am angry that I've been so wrapped up in what I'm feeling that I've ignored my son and haven't had energy for him.
I am angry because I've lost so much: my breasts and eventually one of the implants, time, my big toe nail, a sense of a normal life, a partner, control over the cancer.
I am angry because of the daily reminders that I do have cancer: radiation treatments, having to change the dressings over the open wound at least twice daily and also because the dressings begin to leak from the fluid.
I am angry that when we go to the coast for a few days next month that I won't be able to go into the hot tub and when it's hot this summer, I won't be able to go into my friend's pool because of the open skin wound.
I am angry that I can't be in the sun as much as I want to.
I am angry that my face still breaks out (although it isn't as bad as it was in March).
I am angry that I have to fight this shit every day.
I am angry that I've been crying so much lately.
I am angry because I have to talk myself into going to social events.
I am angry because I know of someone who died of cancer last week and I just feel so bad for her family (see the link to Jane's Life on the blogs that I read regularly).
I am angry because I believe that environmental contaminants, including everyday household items like mattresses, have contributed to my getting cancer.
I am angry because money I could be using to fix up my house or to travel and have fun is instead going to cancer treatments.
I am angry because a lot of people don't understand what I'm going through.
I AM ANGRY.

But you know what, it's a controlled anger. It's not the kind of anger where I want to yell and scream and throw things. It's a controlled, calculating kind of anger - a slow burn, if you will.

And, feeling angry feels better than feeling helpless and alone. I will post a picture of the mandala after I finish it.

Skin Wound Update

I am heading to Wound Care next Tuesday. While the original skin wound is healing, more or less, it still isn't completely healed. It looks better than it did. However, the rest of the area over the tissue expander was a dark color, so sometime in the last week or so, I started putting turmeric paste over that. That skin seems to be healing, too, but it is weeping a lot more. I think Dr. Kenyon today said that it was "skin necrosis". Also, he said that the lymphedema under the right tissue expander was probably swollen because the cancer cells are causing the lymph fluid to back up. He decided to go to the wound clinic in order to maybe do some preventative stuff prior to starting radiation on June 2. He's afraid that the radiation will cause more of an open skin wound.

All I know is that I'm sick and tired of having it.

Things could be worse. Overall, I am doing okay, if a bit tired and dehydrated from Xeloda. Now, I really need to get some work done. Writing up a summary for NSF and also I need to draft up an application to get bought out of a class next year. Aargh!

Tomorrow will be fun, though. I am going to help Eddie's school with their annual Field Day - where they have track and field competitions. I will help with the softball throw.

Update on Alien Hickies : )

I forgot to mention yesterday that on Monday night, after I had the "cupping", I slept really really hard - two four-hour stints, which is unusual for me. Last night was more my typical night - I think I woke up 2-3 times. Part of what my acupuncturist is trying to do is to help my body "retreat" (including sleep) so that it could heal. I guess what I'm trying to say is that while my neck looks funny, I think I had a better night sleeping overall because of the cupping.

And, my skin is continuing to heal, although the open wound seems to be weeping more. My guess is that because the wound is still open, and as I do lymph massage underneath the implant, I might actually be massaging the backed-up lymph out of the wound - I'm directing the lymph fluid down and toward the center of my torso, but backed up fluid could really go anywhere to drain and the open wound is a path of least resistance.

Since I've been doing lymph massage in that area under the implant, it seems that the red is starting to fade again (it had gotten more red after I painted the bathroom). Both my massage therapist and the radiation oncologist asked whether or not the red rash was really cancer cells or whether it was red from swelling/lymphedema. It's probably both and no one really knows. This just really shows the limitations of our knowledge of what's going on here.

Still no word yet on when I start radiation. It looks like it may be next week. I do think I have a couple of new little skin tumors growing - hard little nodules under the skin - so I think radiation is the best course to get rid of that.

Turmeric Experiment, Day 22

I keep forgetting to mention that Dr. Kenyon thought that the open wound was indeed healing. The white areas I saw are the upper layers of skin trying to form. I think he was happy that the wound was healing as quickly as it is. I mentioned this to the rad onc the other day - that I have an open wound, that I'm using turmeric and that it seemed like it was working, and her reply was that we may delay radiation for another week to allow the skin to finish healing there. I was relieved that she was willing to do that . . . now if I can just figure out how to keep another open wound from occurring, I'd be really happy!

A sunny day today - yay! Also, I'm meeting with Sara Gelser at 11am to talk about drug repositories, then I'm attending a lunch with a woman who does research(?) on narratives and illness, then a massage at 1:15pm. So, it should be a good interesting day! Have a good one out there!

Well Crap - Again

I think I have mentioned that the red rash is still there. I've been on the drug combination - Xeloda and Tykerb - for about two months now and it hasn't resolved. It may have stopped growing, but it hasn't really started to shrink. So, Dr. Kenyon today thought that we should go to radiation and get rid of the f*#&#n' cancer cells in that area for once and for all. I will meet with the radiation oncologist again next Tuesday.

What this means is that I might lose the tissue expander. And, it might cause the skin over the implant to slough off and I'd end up with an even bigger open wound. Crap.

Sigh. The ongoing saga . . .

Turmeric Experiment, Day 8

I just had a chance to check on the progress of the open wound and I think that it's healing nicely. The wound doesn't seem as deep as before and most of it looks pink and healthy. Cool, huh?

I reported earlier in the week that my face break-outs are better than before. I noted earlier, I'd upped my dose of Xeloda and I found that my face started to break out a bit more. I cut my dose today, though, so hopefully it clears up!

Happy Sunny Day!

A Turmeric Experiment and a Joke

As some of you know, I have an open wound where the skin metastases was or is in the lower quadrant of my right breast - left from my point of view and right from yours. (Confused, yeah, me too!) I googled "skin mets healing wound breast cancer" or something and found a bulletin board on breastcancer.org (I think, now I can't find it). One woman with skin mets said she started taking an herb called "cucumin" or "curcumin" in addition to her regular chemotherapy. She reported that her skin mets healed. After some searching, I found a lot of sites about the topic. Curcumin is from turmurec, a root that is used in many curries. Turmeric is used in ayurvedic medicine to heal skin wounds. My colleague, who is from India, gave me some turmeric and a web site that told how to make a turmeric paste (http://www.healthy.net/scr/Recipe.asp?Id=47). I made the paste on Thurs and applied it to the open wound after my shower on Friday. I haven't yet had a chance to check on things today, but I did have a dream last night when I woke up to find the wound completely healed. I will report on its progress over the next few weeks (or hopefully less) and let you know how it works.

While trying to find the original post on breastcancer.org, I found this joke: (http://community.breastcancer.org/topic/31/conversation/702163)
OK ... so if the Jacksonville Jaguars are known as the "Jags" and
the Tampa Bay Buccaneers are known as the "Bucs," what does that make
the Tennessee Titans?

Thought it had some relevance to my boob jokes research, so I thought I'd share it with you!

Lab Results and Skin Issues

I saw Dr. Kenyon today and got the results of the blood lab results from last week. My CEA is 0.9, which is a good normal number. The normal range is 0-2.5 micrograms. So, it was in the normal range - a good sign! However, my CA 15-3 level was 36. Two months ago, it was 31. Three months before that, it was 23. Normal is less than 35.

So, should I be worried about this CA 15-3 result? Not really. While in the best of all possible worlds, we would have liked to see this number go down, it isn't cause for concern, because apparently, they are not quite sure what this test is measuring. Here is one critique of the test:

http://209.85.173.104/search?q=cache:a0xdCuoRq5gJ:grouppekurosawa.com/blog/2005_03_16_+CA15-3+blood+test&hl=en&ct=clnk&cd=4&gl=us&client=safari

According to what this person on the blog says (a Dr. Stephen Martin, who has a Ph.D. in immunology; he is promoting his therapy in the blog and seems to be defensive about what he does as it doesn't seem to be widely respected in the medical community; however, he quote legitimate research, although I cannot judge whether his interpretation of these studies is accurate), this tumor marker could also go up when the tumor is dying.

Dr. Kenyon also said that this test measures growing tissue, which could be an indication of another thing going on with my skin. In the area where there were skin mets (as opposed to just the rash) - that cauliflower area - I started to develop a hard thick scab. So, Dr. Kenyon advised me to soften it up a bit by putting aloe vera gel on it. The scab sloughed off last week, leaving an open wound that is about 3 inches long and half inch or so wide. A few small, pencil-eraser-width areas have bled a little and the whole thing weeps a yellowish clear fluid. Not a lot, but a little bit. So, I've been keeping it clean, patting it dry, and putting a non-stick dressing on it. I asked him if there was anything else I could do and his reply was to keep it clean and dry. It may take several months for this to heal! Bummer, but what can I do? At any rate, he said that the elevated CA 15-3 test may be an indicator of my body trying to regenerate the skin in this area.

In the meantime, no swimming pools for me! Double-bummer, because on Friday, my sister and her husband and two kids and Eddie and I are heading to a place called the Great Wolf Lodge, in Grand Mound, Washington, just south of Olympia. It apparently has one of the largest indoor water parks, including this funnel-like thing called the Hurlin' Tornado, that you go down in a four-person raft. Ah well. My sister said that they could take Eddie with them. That means that I'll get to go to the spa instead! And, get a manicure and a massage, too, I think! Yippee!

Visit with My Oncologist

Yesterday afternoon, I had an appointment with my oncologist, who wants to check in with me while I'm on Xeloda and Tykerb. I had several questions for him, which were, in no particular order: 1) adjusting my dose while on Xeloda; 2) what to do with the skin mets; 3) using melatonin for sleep; 4) his thinking about radiation; and 5) insurance approval for Xeloda and Tykerb.

Regarding Xeloda, he gave me permission to adjust my dose of Xeloda. His preference was for me to take it Mon to Fri and then off on the week-end (something about biochemical processes), but I told him that I am really enjoying my week off of it. So, for now he was happy with me trying to take only 5 Xeloda each day while I'm on it, instead of 6. He was fine with me skipping the last dose because of the mouth inflammation. He also mentioned something interesting: apparently, women in Europe are able to tolerate 8 or 10 Xeloda each day, while in the U.S., women seem to only tolerate 6 each day. Researchers aren't sure why, but are looking at environmental factors, such as our diet, or maybe what's in our water or environmental contaminants.

Regarding the skin mets, there were 2 or 3 small areas (i.e., a few mm long) that started to bleed a bit. They were around areas that were pretty dry, so he said to use a small bit of aloe vera gel to moisten it up. By moistening it up, we can keep them from getting larger. He definitely saw improvement - he last saw me on Feb 22, so he saw the improvement over a 12-day period on these meds. So, my eyes weren't deceiving me!!!

He didn't know much about melatonin so I mentioned to him the studies I found related to it. I posted about it last Friday. The thing I forgot to mention is that there are some studies, I think so far just done on rats, that show that melatonin stops breast cancer tumor growth. He wasn't able to suggest a dose. I started with 2mg a night (about 6 or 7 times more than is usually used physiologically) and it didn't seem to help. I went up to 4mg on Tues night and I couldn't even get to sleep! I went back to 2mg last night and slept for 4 hours straight! Yippee. I think I got up to another 3 hours the rest of the night, but I woke up a couple of times and stayed awake. I found some articles on the internet that show that one can take as many as 75mg/night without ill effects, other than feeling sleepy and drowsy. Another article said that elder insomniacs had better sleep with about 0.3mg. One site suggested 40-50mg/day if you are a cancer patient. So, I will monkey around with the dose and see what works. Liz, over at www.lizkreger.com, told me that she uses 5mg/night and that works for her. My oncologist's nurse said that a 3mg dose works for her.

Regarding radiation, my oncologist thought that my reasoning was sound in terms of putting off radiation until I really need it. He said that if the meds seem to be working on the skin rash and the skin mets, then radiation (a one-shot, local deal) wouldn't be necessary. We also assume that if it's working on the skin, then it must be working throughout my body. Yippee! again! If we continue to see improvement, then once it's cleared up, I can go back to getting "pumped up"! Cool. It's kinda weird being half-filled.

He also said that insurance approved the Xeloda and Tykerb, without any extra say-so on his part. My thinking? That giving me Tykerb/Xeloda is cheaper than having it administered via IV, because not only do you have to pay for the meds, but also for the trained personnel giving the meds. Taking pills works for me! Better than having a port or having my arm/hand stuck with needles every so often!

So, yep, it was a good visit. I took my folks out to dinner to celebrate!

Skin Mets, Puberty, and Seeing is Believing

I know that I have written earlier about this red rash (medically known as erythema) that I saw spreading on and below the tissue expander on the right cancer side, within which was a small area of "peau d'orange". I found out on February 1, after a skin punch biopsy, that it was cancer and it was spreading via the lymph channels in my skin, causing inflammation and hence the redness. I started monitoring the spread by marking the outside of the red area in a blue marker.

Well, I noticed at the same time that there were a couple of small pimples in the "peau d'orange" area. I monitored them, too. I got one or two more. Then, I noticed that two of the pimples seemed to be growing bigger. While I waited to hear about whether or not insurance would cover Xeloda and Tykerb (see http://deeupdates.blogspot.com/2008/02/waiting-again.html), and while I waited for the CT and bone scan results (see http://deeupdates.blogspot.com/2008/02/well-crap.html), I tried to remember to ask about these growing pimples in the "peau d'orange" area. When I finally talked to Dr. Kenyon, I forgot to ask about the skin changes. So, after starting the meds and finding that I was doing okay on that, I turned my attention back to the skin, especially after last Wednesday, when one of the larger "pimples" weeped a clear fluid, like a blister.

Until I was able to talk to Dr. Kenyon, I did some searching on the internet about the skin changes. At one point, I thought that it might be "angiosarcoma". I don't want to go into details about it other than to say that the prognosis is poor and I continued to stay anxious and worried. When I finally talked to Dr. Kenyon, he decided he wanted to look at it, so he fit me into his schedule on Friday. I'm thankful he did because I really needed the peace of mind. The bottom line is that the skin changes - the peau d'orange, the pimples, the weeping area, are all symptoms of skin metastases, otherwise known as "skin mets".

The way Dr. Kenyon explained it, our outer layer of skin, the stuff we see, is what is not growing any longer and will die and slough off. Below that is the actively growing skin tissue, and below that are the lymph channels. What happens sometimes is that cancer cells in the lymph channels start growing up into the active, growing skin layer and they form small tumors, which grow and form bumps in the outer layer of skin. A website that discusses various aspects of metastatic breast cancer, which is called "Book of Knowledge", I think, discusses skin mets. The link is:
http://knowledge.bcmets.org/index.php/Skin_Mets . Symptoms include little nodules or pimples, areas that look like cauliflower, red patchy areas, skin thickening or hardening, weeping, etc.

There are apparently a variety of ways to treat them. You can treat them locally through radiation, topical chemo, surgery, or burning or freezing the lesions. Or, you can treat them systematically, via chemo and hormonal treatments. At the moment, my doctor wants to see how my skin mets respond to the Xeloda and Tykerb and I'm happy with that decison at the moment, because . . .

THE RED RASH IS FADING! It certainly isn't spreading and there are a few places where it's receding and there are places within the whole red area that are like normal skin. And, it seems that the hard little pimples are shrinking and disappearing. The two blistery areas - one that was weeping - are also shrinking. So . . .

YIPPEE!! That's why "seeing is believing" is in the title to this post today!

I was a bit down yesterday - I felt some queasiness and dizziness. So, I took it easy. I hate feeling that way, though, as my preference is to be productive. My partner, Scott, was here visiting me, and he was very supportive, but I felt bad that I wasn't better company.

But today, the skin stuff seemed improved over even yesterday! And, that put me in a better mood today.

As for puberty? Well, my face is breaking out - due to both the Zoladex and the Xeloda/Tykerb. Sigh! Add to that little nubbins of boobs, with tissue expanders only partially filled, and you get the picture. I really hated zits the first time around.

But, ultimately, the zits and the bit of nausea and dizziness are worth it because IT'S WORKING! I CAN VISUALLY SEE IMPROVEMENT! And, for that I am thankful.