Same treatment plan

Found out today that since the cancer in my cervix is. Feast cancer, so the treatment is the same: gemzar, herceptin, and zometa.

In the meantime, on a fluid restricted diet (2000 ml) and trying to eat more solids.

No other news.

Oh, except a big thank you to Cat for homemade Mac and cheese last night and Shannon for homemade soup. Thank you!

Looks Like Gamma Knife

I got the MRI results back the other day - first from the nurse on Tuesday afternoon and then from my doctor yesterday morning. I also requested that the neurosurgeon look at the MRI, but I haven't heard from him yet. I didn't want to post anything until I had some definitive information to share.

The bottom line is that the MRI found normal post-operative changes at the top of the left side of my head. There were also no new lesions in other areas. However, on the right side of my skull, behind my right ear, the radiologist noted an "enchanted nodularity" that may indicate progression of metastatic disease. This was the area the neurosurgeon first operated on on May 20. The suspicious area is 3.5 x 2.2 cm.

My radiologist oncologist wants me to do whole brain radiation (WBR), which would start the week after we return from the coast. But the last couple of nights, I've not slept and my shoulders and my right arm have been very tight. I have been very teary and anxious.

But today, as I waited at Home Depot with a friend, she called again and asked if I'd heard from the neurosurgeon. She also said she showed my case to her colleague, who does Gamma Knife "surgery". He told her that he could definitely do this treatment for me.

Gamma knife involves only one treatment, but I think I'd have to have my head bolted down, and then radiation would be delivered to a very localized area. It doesn't have nearly the toxic effects as WBR. It might take half a day and it would have to happen in Portland.

WBR would be another 10 or 13 daily sessions. It would have more toxic effects, like nausea and swelling. The good thing is that it would or could prevent the growth of more metastases. And, she'd want to do it sooner rather than later.

My problem with that is that I still have two wounds that are healing. The one in my armpit has an infection so I am on low-dose antibiotics. That is partly due to the lymphedema. The other wound is in my chest. The top part of the wound, which had been closed by a suture, broke open, so instead of 85% of the skin graft taking, now there is only 60% of a skin graft that has taken. Fortunately, it is not infected.

My digestive system is still healing from the steroids and the high-dose antibiotics. But that is gradually healing with Chinese herbs. I no longer have the nausea.

Yesterday, my acupuncturist and today, my physical therapist, did what they could to relieve the tension in my shoulders and right arm. My physical therapist said that my right arm and shoulder actually has nerve tension, so she did some gentle stretches on my neck and arm.

But as I told my radiation oncologist, Dr. Mc., while I was at Home Depot, I just feel like I have been through so much that WBR seems very overwhelming. I said that I still have two wounds that are healing (which she seemed surprised to hear about) and that all I want to do is to rest and recuperate for awhile before doing WBR. In the end, after much discussion, (I told her that I was now afraid of WBR), we decided to try gamma knife for now and reserve WBR for later when I feel stronger and the wounds are healed.

If I did WBR and experienced nausea, they would want me to go back on steroids, which means that they'd mess with my immune system, wouldn't heal wounds, and I would probably still have an infection in my armpit.

With gamma knife, I wouldn't have the nausea, wouldn't have to go on steroids, and maybe those wounds could keep healing. I could go up to Portland and back in one day.

Once I had that discussion with her (and after we went to the Social Security office), the decision to do gamma knife FEELS right. I don't have the tension in my shoulders and arm. My heart and head and body feel lighter, like I'm not carrying the weight of the world on my shoulers (as I felt earlier today during my therapy session). It feels doable to me. I can probably schedule it for the time when Eddie is in Virginia with his dad.

It's made me realize that my anxiety and tension was due to me fighting and pushing back at my doctors - who wanted me to WBR - and not feeling like they were really hearing me when I kept saying I need to rest. My radiation oncologist., Dr. McG., heard me today (she'd heard me before but kept urging me to do WBR) and agreed that gamma knife would be okay for now.

So, now I feel like I can keep healing, deal with the infection, stay on antibiotics, do gamma knife (to take care of the immediate area behind my right ear), and I can enjoy my summer. This gives me the needed time I need to heal and recuperate if (and that is an if) I need to do WBR.

And, WBR is still a treatment option should I need it. But it can wait until I am more recovered from surgeries and wounds. In the meantime, I am back on Tykerb, which gives a protective effect on my brain.

I think I will sleep better tonight. I already have less tension in my arms and shoulders. That is a good thing. It amazes me to realize just how much the prospect of doing WBR was weighing on me.

I meet with the doctor about gamma knife next week, after we get back from the coast. I feel like I can finally really enjoy my time at the coast. We leave on Saturday. We might even be able to go to Omak to visit my godparents in August. I feel like I can enjoy my summer. Finally.

In other news, we picked up the wood for the deck today - we will still need to get things like wood for the railing and stairs and a door to replace the picture window in the front room. And, we found out that Eddie will also get some benefits (based on my record) from social security. I'll start drawing those benefits around Christmas. Those are positive things happening in my world.

Here's to decreased tension in my shoulders. Thank god.

My Doctor and I Understand Each Other

It was a good day today. It was a bit of a lazy morning, then I sorted through Eddie's and my clothes to get rid of stuff we won't wear anymore to take to Goodwill. I also sorted through linens and blankets, too. I wanted to put labels on stuff in the garage to sort them into a dump pile, a garage sale pile, and a Goodwill pile, but ran out of time.

I then went to my office to pick up some articles and stuff so I can work on my blogger analysis article - some research on narrative medicine and such. Then I talked to my supervisor and was reassured that my decision to go on disability (at this point, temporary for the next year) was fine with her. Then I told her my ideas for things that I had to drop last month - things that I could pass on to others or what I wanted to continue for myself.

Then I talked to our school's accountant/assistant (formerly our office manager) about my grants and she informed me that she and another colleague intended to come to my house today to clean our our gutters, but my colleague had a last minute visitor and couldn't make it. Then it turns out that my colleague's 20-year-old son overhead the whole conversation about the gutters and informed them that he would come over in the next week to do them because (and I quote), "I don't want to see two old ladies up on the roof doing it". Wow! Totally unexpected. Thanks, S.!

Also, my supervisor and the accountant say that there are plans afoot to either do more yard work or to paint the house for us. Wow again! I feel so very fortunate to have such great colleagues. I should also say that a colleague's husband came over today to help my dad in the yard - he trimmed the shrubs in front of the house and hauled dirt for dad. The yard is really starting to take shape. Thank you, A.!

Then, it was off to see my therapist. I was apprehensive because I wanted to talk to Dr. K about my making decisions without consulting him, plus concerns about the areas in my armpit that aren't healing (the smaller areas suspected of either infection or cancer). We had a good discussion and it helped me to clarify exactly what I wanted to say to Dr. K.

Then it was time to see Dr. K. When I got in to see him, I said that I know that I made a couple of decisions to do the last two surgeries without consulting him. Part of the reason for not doing so was that he was out of town and also that I was afraid he'd talk me out of it. I also said that I hoped that making decisions like that wouldn't harm our relationship. I teared up a little from anxiety, but then he reassured me, "Don't worry about that [making decisions without me]. Those decisions are very much in keeping with the way that you make decisions." In other words, I didn't surprise him.

I proceeded to tell him that his comment about Christmas made me sad at first, but then it pissed me off and his reply was, "Good!" I also said that I thought he was trying to manipulate me to continue treatments sooner than I wanted and he just smiled. I just smiled back. He also said that sometimes, physicians have to be realistic with their patients - and in my case, I do need to make some preparations in case I die sooner than I think I will, particularly get my will prepared, etc., which I have been avoiding because I don't want to think about it. But best to be prepared.

So, then I showed him some of the research I found (namely, the piece about survival rates and brain mets) and then made my case for getting the skin mets under control. I told him about some of the things I found on the her-2 bulletin board at breastcancer.org (I think) regarding skin mets. I told him about some other options, like topical treatments, testing my tumor's biomarkers/DNA?, and TDM-1.

Of all the options, he seemed to like the TDM-1 and said that we needed to get me into that clinical trial. So, I told him that Genentech has an application process by which he applies to be a PI for me on an individual use basis and he said he'd be happy to do that.

I was pleased with the visit. It seems that Dr. K and I understand each other. He supports my decisions, promised to look into some of the options I presented, and also to try to get TDM-1 for me. I'll see him again after whole brain radiation - and our mini-vacation to the coast.

I have been tired all evening though. It was an emotionally draining afternoon, but it was a good one. I feel that things are moving forward as they should be.

Surgery tomorrow. A good thing, too, because the chest tumor started bleeding a lot last night. Luckily, the nurse gave me a powder that clots the blood; even so, there is still some underlying leakage. I didn't change the dressing tonight (I changed it this morning) because I was afraid it wouldn't stop. I'll let my surgeon deal with it tomorrow.

Time for me to turn in. I'll write you all on the other side of surgery! Wish me luck for no complications like infections and too much bleeding. I appreciate all of your healing thoughts, energy, and prayers!

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.

Good News

I spent some time this evening looking at survival rates for brain mets from metastatic breast cancer.

I read studies with all sorts of numbers and averages and such. But I won't report them here because I don't want to put any kind of timeline on my life. I just need to not think about those numbers.

But it seems that surgery followed by whole brain radiation increases my surival rate. And, I think Tykerb will also help keep it all under control. There are a few chemotherapy drugs that cross the blood brain barrier.

But even more important to my longer term survival is if my "extracranaial disease" is controlled. And, according to the last CT of my body in late March, other than scar tissue and calcium deposits in my bone marrow, my "extracranial disease" is controlled. In these cases, it appears that people survive longer than the one Christmas my doctor talked about.

So, I am comforted by what I read. Because I want to live long enough to see Eddie into adulthood.

Moved from Being Sad to Being Pissed

I was sad after my last post.

But within about an hour, I became pissed off. I think Dr. K wanted to scare me into more aggressive treatments sooner. Well, it worked.

Now, I feel resolute - like I will have energy for the next phase of treatment.

I already made an appointment with the radiation oncologist for next week. I hope to do the treatments beginning June 26 and ending July 15. That way, I can go to the coast for a week knowing that I've done what I can to kill whatever cancer cells are left in the brain.

I will also start Tykerb sometime soon.

I am, however, reserving judgment on the chemotherapy.

Thank you to everyone who continues to think about me, read my blog, pray for me, etc. It surely helps!

And, now, back to regaining my strength.

Not What You Want to Hear from Your Doctor

Dr. K just called me. He wants me to start whole brain radiation in two weeks. And, then do more aggressive chemotherapies like the Taxotere or Ixempra.

But he also said that with the way my cancer is behaving, this may be my last Christmas.

Not what you want to hear from your doctor.

I refuse to believe that that is the case.

But because he sounded so dire, I might do the whole brain radiation in three weeks - so that I'm finished by the time we go to the Coast in mid-July.

And, maybe I'll consider the stronger chemotherapies later this summer - like in August.

In the meantime, he's going to get me back on Tykerb.

Shit. I really wanted to take it easy from treatments this summer.

But I owe it to my son to do whatever it is I need to do. And, I have two books to write.

I also told him about TDM-1 and how it's put one person I know into stable disease status. And, she gets cyberknife treatments for any new brain mets that show up. She thought she was going to die last year and here she is.

I am not giving up on the idea of stable disease status. I can't.

Sleepless Nights are Conducive to Thinking and Making Decisions

I have been feeling generally sleep-deprived the last couple of days. Damn steroids. But the news that I can go off of them sooner rather than later - in less than two weeks - was very welcome news. The neurosurgeon allowed me to cut my dose from 4mg 4x/day (which he said was too much) to 4mg 3x/day. My fingers are still numb but I am steadier on my feet, so I made the decision to only take two doses a day until surgery.

Oh. I forgot to mention that surgery is Wednesday morning.

If my hand gets weaker and/or I feel unsteadier on my feet, I'll go back up to 3 doses. But I don't think I need it. I mean. It's only four more days until the sucker is taken out and I don't have to worry about swelling.

I slso decided to put off whole brain radiation for a couple of months - maybe to the end of summer. That is now a prophylactic treatment - to prevent regrowth. But I plan to ask Dr. K to put me on Tykerb again which is a drug like Herceptin but is a small enough molecule to cross the blood-brain barrier. If I can start taking that within a couple of weeks of surgery, I will have some preventive measures to keep any more brain tumors from growing. Tykerb is easier on my constitution.

I made this decision because I want to get stronger this summer. I feel like it was a long long winter and spring - I was tired a lot with that damn tumor under my armpit. It's gone and with no lymph nodes or lymph system, I presume that there will be no further cancer growth there. Chemotherapy last fall through January made me tired and by the time I had surgery, I really had no reserves to fight the infection. I am still recovering from the April 1 surgery and now I am 8-days post brain surgery and am contemplating another surgery in 4 days. I am bouncing back from these last two surgeries faster (which seems strange that you'd bounce back quicker from a brain surgery but there you have it).

I just want to spend the summer having fun, resting, and gaining strength. If I go on Tykerb, it can perhaps help with the tumor on the chest and it will protect my brain. If I can avoid the heavier-duty chemo (although Dr. K won't like that idea), I will get stronger faster. Radiation creates fatigue, but if I can delay that for a few months, I will get stronger faster. Tykerb would give me the same result, I think, that radiation would in terms of protecting my brain. If they press, I will consider radiation in late summer/early fall. That is soon enough, I think.

Doing this, going on Tykerb in addition to the Herceptin and Zometa I already get, will help me gain strength. That tumor on my chest didn't grow while I was Tykerb. I want to get back to "normal". I want to travel locally this summer, visit people, have fun. I am in a much better position to do that if I can delay radiation and heavy-duty chemo. Like I said earlier, I'm not convinced that heavier duty chemo is the way to go. I will, however, consider both if there any indications that the cancer keeps progressing this summer. But I don't think it will if I go on Tykerb.

I also decided the night before last that I will probably go on long-term disability this next school year. As I tried to go to sleep, I had morbid thoughts about not being around and concluded that life was too short to stress about work. I really want to spend the next year figuring out a treatment regimen (both western and alternative forms) that will get me into stable disease status. I felt like this last year and a half, I have been doing a half-ass job at work and a half-ass job at healing. Knowing I couldn't put my full energy into either made me feel conflicted all the time, worried about inconveniencing my colleagues, worried I wasn't doing enough for my health, and not having any energy. It's time to devote myself to healing and to let my colleagues get someone in there who can take over my duties so they don't have to wonder and I don't have to worry. At this point, I figure it will be the whole year. This will allow me to really consider a wide variety of options and being proactive instead of reactive with my treatment. I want to develop a range of spiritual and medical practices that will allow me to reach stable disease status. I can only do that if I don't have to worry about work.

When I reached that decision, I smiled and felt some measure of peace, even if I couldn't sleep.

So, that's the plan, man. I'm gonna try to start Tykerb within a couple of weeks of surgery. I will delay radiation until later this summer after I gain strength. I will continue with Herceptin and Zometa and will continue with my turmeric/mushroom paste on the skin tumor. I will gain strength and contemplate the things I can do to reach stable disease. : ) Sounds like a good summer, eh?

Should I Be More Worried? OR the Power of Positive Energy

When I got the news last Wed night that the MRI showed two brain tumors, I wasn't too upset. My family was much more upset and I cried because they were crying but not because I was devastated at the news. I know it's serious, but I am still not really devastated or even worried. I am more worried that I need to be worried about this setback than about the setback itself.

So, as the steroids keep me awake at night, I have been trying to figure out what I think about the whole situation.

I keep thinking that it could be much worse. Surgery was successful. I am on steroids that interrupt sleep and mess up my stomach but the weakness and numbness in my hand and arm are dissipating. I hardly have any pain. The acid reflux pills help. I rest as much as I can. I have a plan for treatment in the next weeks that should take care of that pesky brain tumor. We will work on a maintenance plan to keep it from coming back afterwards.

I have a plan for the tumor in my chest. My wound under my armpit is still healing - the skin is still growing over the lat flap. There was a 6x8cm open spot and I think it was a 2x1 and another 2x1cm spot.

I start PT next week for the lymphedema in my upper left arm.

I decided the brain tumors were a wake-up call - I had been really fixated on the damn wound and satellite lesions (about 18x12cm right before surgery) in my armpit prior to the April 1 surgery and I hoped that after that surgery, I could enter into stable disease status. But the brain tumors might be telling me that I can't be too complacent about how I approach my treatment and my healing.

I am not convinced, however, that heavier duty chemotherapy will be the ticket. I read other bloggers who have gone that route - they've lost some quality of life and yet their disease still progresses.

To me, that means that I need to figure out ways to approach my treatment that are more humane to my body. I've been doing a lot of reading on EAstern philosophies and healing traditions and want to bring more of them into what I do. I have friends who pass me on information on that and I see my acupuncturist. I think I will dedicate my summer to exploring these kinds of both spiritual and physical actions more as I think I will live longer that way.

The brain tumors have also really given me permission to just forget about work. The stressful part of work. The only kind of "work" I want to do is the fun stuff - learning about people and why they do what they do, which is why I got into anthropology in the first place. My whole plan this summer is to putz around at home, work on mosaics, maybe plan yard projects, go to the Coast, stay in a treehouse. Fun stuff. Life is too short is get caught up in the drama and politics of work.

So, in the end, I guess that's why I am not more worried about the brain tumors. Things could be worse. I could either spend my time depressed and worried and sad or I could just see this as an opportunity to make sure I make the most out of my life, enjoy myself, enjoy my friends and family, spread joy, be creative, be thankful, and count my blessings. Laugh. That is a choice one can make. I choose to focus on the positive. And, life is still good!

I also think that the continued good energy, positive vibes, prayers, blessings, and whatever else is coming my way also help me a lot. And, for that I am always thankful!

Whole Brain Radiation

So, today, we figured out the plan of action for the next few weeks. As you remember, I do still have a 2cm tumor near the front of the left side of my skull. Some of the swelling may be causing me to have some weakness on my right hand and arm - they feel weak and a bit shaky. I am still shaky on my feet but that may dissipate as I recover more from surgery.

I get the staples out of the incision on Friday. I will start (or restart) whole brain radiation beginning May 31, the day after Memorial Day. That should remove the 2cm tumor in my skull. I may experience more swelling (which would cause headaches and nausea) or it may actually decrease as the tumor shrinks and the swelling goes down. It all depends on how things go. I hope that I get through the radiation treatments with nothing more than fatigue.

Because I only had one radiation treatment, the radiation oncologist wants me to have 14 more sessions of daily radiation. That starts May 31 and will go to June 17. So, it looks like the next month, I will be resting, recovering from surgery and radiation, and just not doing much overall.

The wound in my armpit is healing and getting smaller. There isn't much drainage anymore, but will still have biweekly dressing changes for the next few weeks. Also, during surgery, the OR people did not protect the lump in my chest, so now the skin tissue there is degraded and draining a bit. I am not sure what we're going to do about tha damn thing, but I hope that Dr. F (the surgeon) can eventually take that lump off and patch over it with a skin graft.

I am always amazed that people keep telling me about my positive attitude. I guess I do work at cultivating one - part of my strategy is that I always figure there's someone else worse off than me. Yes, I have these brain tumors, but it looks like treatment will take care of those. I have the tumor on my chest, but we have a plan, of sorts, for that. Otherwise, it seems to me that the immunotherapy I had at UW last year is taking care of any advancement of cancer within my body. My liver and lungs are fine and I have sclerotic (i.e., scarred) lesions in my bone marrow, but not attached to my bones. The way I look at it is that I'm doing okay. I think there are things I can do to keep the cancer from coming back to my brain. We just need to get on a maintenance plan for the rest of my body. I fully expect to get through treatments and recover this summer and return to stregnth in the Fall. I'm not ready to kick the bucket yet.

I also think that my positive outlook is due to all of you out there praying for me, sending me positive energy and vibes and blessings. It buoys my spirits and keeps me smiling. Love to all of you!

Would any of my Her-2 positive readers like a little VIAGRA? LOL

One of the other blogs I read, written by Ann, had the following post about Herceptin, a treatment for Her-2 positive breast cancer. Ann had quite a humorous take on this actual research study . . .

Viagra for Cancer



Enjoy! Thanks, Ann.

This was even funnier today as Herceptin was infused into my veins!!! : )

HAZ - A - HA - Whew - HAZ - A - HA - Whew

Say what? : )

This is actually my treatment schedule. For the next few months (assuming that the Abraxane/Herceptin combo do the trick), I will have a monthly cycle that goes something like this:

Week 1 - HAZ - Herceptin, Abraxane, Zometa

Week 2 - A - Abraxane

Week 3 - HA - Herceptin and Abraxane

Week 4 - Whew - no chemo or targeted therapy

Repeat.

So, I will be posting things like: "Today is a HAZ Day" or "Today is an A Day". Just so you're warned!

You know, you gotta have fun with this s#*t!

Wow - Three Years

It's hard to believe that I started this blog three years ago. In fact, I missed my three year anniversary of this blog (it was Oct 15, 2007) as well as the three-year mark for my second diagnosis of breast cancer (October 3, 2007).

At the time, I never thought I'd go through what I've been through. Here's a list:

Surgeries: 2 (bilateral mastectomy and reconstruction) with 1 more planned

Radiation: 6 1/2 weeks to kill the cancer in the skin (June 15 to Aug 1 2008)

Mets Diagnoses: Skin - 2 times (right breast area; left armpit); Lung (3 in left side); Bone Marrow - multiple sites; Lymph Nodes - multiple sites; Liver - potential site?

Targeted therapies - Tykerb (March 2008 to January 2009; April 2009 to Nov or Dec 2009); Herceptin (January 2010 to July 2010); Femara (August 2009 to November 2009)

Chemotherapies - Oral Xeloda (March 2008 to December 2008; April 2009 to July 2009); Abraxane (October 2010 to ??)

Open Skin Wounds - Right breast area (March 2008 to February 2009); Left armpit - August 2010 to present)

Depression - two times when it was hard to lift my mood, when I remember envying "normal" people

Worry - multiple times

But there was good news - I achieved "stable disease" from August 2008 to April 2009). And, it looks like I might be headed to stable disease again. (There are two kinds of remission, one in which a patient is NED or no evidence of disease. And, there is "stable disease", which is me, because I may never get rid of the calcium deposits in my bone marrow since they take so long to resolve and the calcium deposits are evidence of disease.)

I have enjoyed incredible support from family, friends, and colleagues. I have reconnected with high school friends through Facebook. I have grown closer to many people. My son is healthy and doing well. I have "met" several cancer bloggers, a few in person and others just online. These women have taught me how to persevere, how to deal with side effects, how to continue living life to the fullest, how to stay connected, how to approach this disease, and I'm happy to continue sharing in their lives through their blogs.

I also have very good medical care providers, including my oncologist, my radiation oncologist, my therapist, my acupuncturist, my wound care nurse, the UW clinical trial doctors, the infusion nurses, my surgeon, my plastic surgeon, and all the nurses who help my doctors.

I feel that I have learned a lot about diet, alternative forms of healing such as Chinese Medicine, and have started my own spiritual search. In terms of spirituality, I have done a lot of reading and have an eclectic mix of things that I believe in. I have had some experiences, too, that can't be explained. I feel like I am healthier mentally and emotionally than I've ever been before.

It's really been a roller coaster ride. It's a metaphor that is probably overused, but at the moment, I can't think of another way to describe it. The truth is that there have been highs and lows. But through my learning of how to cope with this disease, I've learned how to cultivate happiness. I have learned to create gratitude lists. I focus on what I have rather than what I don't. I make a choice each morning deciding that I will be happy. I don't always succeed, but I never feel guilty about that. I do, however, try to let the bad feelings pass through me, now, rather than hold on to them. I feel, though, that with all that I have learned and the recent treatments I have had, I may be poised to enjoy a long period of remission. I have some work to do to enable that - like trying to not eat sugar in my diet (which feeds the cancer) and to practice qigong and meditation more regularly. But I'm getting there.

I wish I could've learned all these lessons without having cancer. I would never wish this on anyone. But that's not the way it turned out. As I'm found of saying nowadays, "It is what it is." Not much I can do about how it happened. I do have control over what will happen next, which is to live a good life and to continue learning how to be a better person.

Because life is good. And, I'm thankful for it and for all the support that I have received. Thank you for reading the blog. Here's to 30 or more years of it, huh? : )

My State of Mind These Last Few Days

How am I feeling these days? In a word - happy. In love with life!

When I look back at the last few months, I see just how much my physical symptoms and side effects impacted my sense of well-being.

First, beginning around my birthday in July, I had an "inflammatory flare" in my left armpit due to the t-cell infusions and Herceptin. This inflammation caused a lot of pain and I ended up on pain pills for several weeks. So, I either felt pain, or some slight nausea and dizziness and fatigue from the pain meds.

Then, I had withdrawal symptoms from the pain meds - about late August.

Then, I ended up with an open skin wound. Got the news of disease progression and discussions with doctors about next steps. The whole area is still swollen and somewhat painful, not as bad as in July/August.

Then, I ended up with an infection in the wound and it started to grow. Fever, chills, and/or nausea/fatigue from the antibiotics. That was late September into early October. More discussions about what was going on - worry that I'd be hospitalized, worried if I should start treatment while still fighting an infection, placement of the P.A.S. port, starting a new treatment, learning about side effects.

Whew. A LOT was going on. In one sense, it was like I was a ball in a pinball machine, bouncing from one symptom and side effect to the next.

But now? Now, I am settling into a kind of routine again. Side effects are predictable. Side effects are doable - just fatigue and hair loss. My work is going well - when I'm there. I have a plan of sorts. I know what will happen in the next few months. There's evidence that the treatment is working. Mount Herminator is now a witch's cauldron. I don't have to lift my arm up constantly anymore. I can sleep on my left side again.

My heart, my soul, my mind - all feel lighter; I feel happier. A big weight has lifted. I guess because for the first time since I found out that the cancer had gone into my left lung 18 months ago, I am finally responding to treatment (t-cell therapy combined with Abraxane).

I wish to give a huge thank you to everyone who has helped me over the past six or so months. From my family who takes care of me daily, to my chauffeurs to Seattle and in Seattle, to the people who donated funds so I can make the trips, to my medical team who takes care of me, to my friends who keep me amused and entertained, to all the many people who keep me in their thoughts, prayers, who send me blessings and positive energy and little gifts. Thank you all! I have a huge wonderful support system and I can't thank you enough. Because, you see, you help me. I am doing so well because of you.

Cancer's on the run, baby. Time to celebrate!

So far so good

First, I'd like to thank dad for hanging out with me today and for picking Eddie up from school. Things took longer than expected because they were waiting for orders from Dr. K . . . but I didn't stress about it because I didn't have to be anywhere at any particular time.

They used my right arm because the left arm is too close to the open wound. They found a vein fairly easily. Then, they gave me saline, then the premeds (anti-nausea with a small dose corticosteroid). I finally got the Abraxane, then it was flushed, and then I got Zometa.

Two of the nurses I know were there - J, who worked with my sister at one time, and P, who introduced us to cob cottages. I guess P has decided to build a cob wall in her backyard. I told them about Mount Herminator - they laughed at my description and P called me a "Conehead"!! LOL I really like the nurses there. A pretty cool bunch of ladies.

We also had an ongoing discussion of the port. Dr. K doesn't want me to have it. But the nurses do. In the end, they thought my risk of infection was higher because of multiple needle sticks then if I got the port. I'm opting for a P.A.S. port. While many of their patients have chest ports, there are some that have the P.A.S. port in their arm and they love it. None of them have had infections.

So, I get the port on Thursday and then my next Abraxane appointment is the Thursday (the 14th) after.

I colored October's Mandala of the Month - appropriately labeled Yin Yang! - and I colored red spots where the CT shows possible places of cancer. I think colored yellow A's (Abraxane) flowing through the mandala to the red spots and then put them on fire. The A's were "alarms" that called the HT cells (Herminator-2 cells or t-cells) where there were hanging out in the lymph nodes. The HT cells were called to put out the "fires" in the cancer areas. The whole area was colored a spring green with a darker blue on the outside. That signifies healing.

I also finished coloring another mandala by Maureen Frank, the Mandala Lady. It was one I started several months ago. It had roses. The nurses enjoyed looking at the designs in the three coloring books I had and particularly liked some of the colors I used. We had a fun chat about home remodeling, painting, and choosing color.

So, it was a relaxing time at the ol' Infusion Center. Great nurses. Good company. I'm just tired. Stayed up too late last night (midnight) - anxiety and some frustration at the medical team. As my therapist said today, this is why this is why we need electronic medical records!!

I also saw my therapist and my acupuncturist today. Thank goodness for both of them! I think by talking through my frustration with them, I was better able to let go of that negative energy so that I could welcome the chemo so it can do what it needs to do. I'm imagining Abraxane sending the alarm to the t-cells and the two working together to shrink the areas of cancer.

Thank you's are in order: First, to my dad and my parents for taking care of me and Eddie this past week or so. Second, to the other cancer bloggers and all my friends who are keeping me in their prayers and thoughts! I appreciate it all! And, third, I thank the nurses and my acupuncturist - it's very nice to have more than just a professional relationship with them. I think I would call them friends if they were not part of my medical care team. Well, they are my friends. Fourth, I want to thank Cat who graciously agreed to take on my class tomorrow. I visited her and Auntie Cecilia and Uncle Aakagak today to give her the materials. Uncle Aakagak is really a happy baby and climbing all over things. Reminds me of when I went to King Island with Uncle Aakagak - he scrambled up the right side of Kuuk so easily - with seemingly no effort. Scared the heck out of me! Cat, that's why Baby Goo likes to climb! You need to start him early on rock climbing! : ) And, finally, thanks for Dr. K for putting up with multiple phone calls and questions yesterday. I really needed to hear it straight from him so I could make decisions. I don't like being kept in the dark.

Thank you all again, very much!

I may be the first medically documented case of . . . (drum roll)

Satellite lesions in a cancer other than melanoma that has been treated with adoptive t-cell therapy.

In other words, a phenomena that medical professionals thought was unique to melanoma is now happening, right now, in my body!

I always thought I was *special*! LOL

I had my visit at UW on Thursday and talked to Dr. D. Boy, is she smart and very very up on the medical literature. She was quoting immunological studies, cancer studies, t-cell therapy studies.

I followed along, but lord knows I won't be able to remember it all, let alone report on it.

Instead, I will tell you what I remember, but please remember that I may have details wrong. So don't quote me. Talk to a medical professional if you have questions!

First, the satellite lesions. As I may have discussed in an earlier post, it seems that the main lump or lesions has shrunk. That is the one that is leaking exudate and where there has been some breakthrough (an area about 4cm long and a 1 cm wide) in the skin. This was the first time that Dr. D saw me, but she felt it was smaller, too, based upon the digital pictures we sent as well as Dr. K's description.

And then she said, "Deanna, your case is very interesting." (Aside: be wary when a doctor says your case is interesting. Could be good. Could be bad. But usually means something is out of the ordinary.)

Turns out that the medical literature reports an "interesting" phenomena that happens in melanoma patients with advanced melanoma who get adoptive t-cell therapy. What happens is that the main central lesion shrinks but these satellite lesions crop up that tend to be more resistant to t-cell therapy. Medical researchers thought that this phenomena was unique to melanoma but now I have shown that this isn't the case.

My case is the first documented case in which satellite lesions have cropped up in a cancer that is not melanoma. Should one cheer at this news? Hmmm, not sure . . .

Anyway, Dr. D feels that these satellite lesions will not respond to the t-cell therapy as well. I also have some lumps in my right clavicle that have grown a bit in the last month (from over 1cm to 2 cm and the other is now about 1cm). Dr. D says that these are cancer, so in her opinion, I need to start systemic therapy sooner rather than later.

I could do radiation, but that just treats the local area (under the armpit), not the whole body. Since there is evidence that cancer is elsewhere in my body, systemic therapy would be better. If systemic therapy doesn't quite do the trick in my armpit, we can always do radiation.

I should also say that radiation would hurt the skin's ability to heal. Dr. D thought that once the cancer in the armpit was killed through systemic (i.e. Chemotherapy) treatment, the tissue could heal within about six weeks.

Radiation would delay the healing and might also impair the healing process.

So the drug of choice is Abraxane. Side effects include hair loss (about 50%), neuropathy (numbness and tingling in the extremities), fatigue, and maybe nausea. I wasn't so sure about this chemo unil Dr. D explained that Abraxane works a little more like a targeted therapy rather than a traditional chemotherapy. There is something about how the drug is created, at the molecular level, that causes it to pause or stop where the cancer cells are. Then it releases a chemical signature that mobilizes the t-cells to attack the cancer. (I will probably butcher this explanation, so don't quote me!) Abraxane finds the cancer cells, coats them with a chemical that makes the cells look like a bacteria. This is important because while the body's immune system sees the cancer as abnormal (a mutated version of your own cell), it doesn't see cancer cells as foreign bodies. So the antigen presenting cells (cells that roam around your body looking for foreign cells like viruses and bacteria) don't send out a signal to the t-cells (that Dr. D described as hanging out drinking coffee in your lymph nodes waiting to for the alarm to seek and destroy - loved that image, BTW, makes me chuckle) that there is a foreign body. Abraxane changes that by giving the cancer cells the look of a foreigner, so the antigen presenting cells start sending out the alarm, calling for the t-cells to attack the "foreign" cancer.

So, I will start Abraxane in two weeks. I will have a CT scan next week. I wanted to wait two weeks because Puttin' on the Pink is in four weeks and I want to have as much of my hair as possible. The hair doesn't start falling out until 2-3 weeks afterwards. I don't mind the hair loss. Fatigue is fatigue. Have experienced that before. It is the nausea that I don't like. And the neuropathy will be weird.

I hope that I only have to do this for a few months. It will depend on how my body responds. I think it will help get us back in control of the cancer and then when the t-cell therapy kicks in, I won't need anything too strong. (Dr. D reiterated that the average time for complete response to t-cell therapy in leukemia is 45 weeks or 10 months.)

So, Abraxane on October 1st. My visualization while getting it will be the construction of a red flashing light and a siren at the site of cancer cells, so that it can sound the alarm to those coffee drinking t-cells ha Ginger out in my lymph nodes. Time to sound the alarm!

I am not the least bit concerned . . .

Dr. K called me yesterday, while my son and I were searching for his game. He told me he had talked to Dr. D from UW. And he said, and I quote, "Now I am confused as to what to do."

It seemed to him (my doctor) that Dr. D said to go ahead and do what he thinks he should do in terms of my care, but if at all possible, if we can manage the symptoms of the inflammation, could we wait to start anything, at least until my next scheduled trip to Seattle. So the message he got was go ahead and treat but they really wish you wouldn't. Dr. D said that they would like to give the treatment the time it needs to really work.

So I suspect that many might be concerned about my doctor admitting that he was confused. But I am not. I like that he is truthful and honest with me. There haven't been many Phase III clinical trials for patients in my situation. Even Dr. D said that the "inflammatory flare" that she thinks happened to me was only something she's read about in the literature. The trial I am in is a Phase I/II trial, which means that they don't know what will happen - that is the point of a trial like this. So it leaves my medical team wondering about the best course of action: wait and see if the t-cell infusions work, which might be 6-10 months (which would be December 2010 to April 2011 for me)? That might risk further progression of the tumors, maybe so much that it gets out of control.

Do radiation now, which would get rid of the third boob, but would also kill off those lovely t-cells we worked hard to produce? In theory, I think my body would continue to produce t-cells, but maybe not in the quantity that I had after the infusion (16 billion is a lot, I assume). Radiation would improve my sleep - my lower back is achey after sleepy on my back or belly for weeks now. I can't sleep on my right side (lots of scar tissue damage from surgery and radiation and lymphedema) and now I can't sleep on my left side because of the nodules, inflammation, and tissue necrosis which is located under my left armpit, towards the back.

I have appointments with the radiation oncologist and my regular oncologist next week, plus one with my acupuncturist.

I do have a lot of purple-gray skin where the nodules are, which Dr. D says is tissue necrosis, which is mainly dying skin. This is a good thing because it means the t-cells are there working to kill the cancer there in the skin.

Radiation would probably cause more inflammation and probably means more pain. I might have long term side effects like I do on the right side in terms of lymphedema, which means I might be doomed to be a back or belly sleeper for the rest of my life . . . And there would be some tissue damage, too.

Hmmmmm, what to do? At the beginning of this week, I was pretty sure I would do radiation. But now upon further consideration, I might wait. I will know more after I talk to the docs next week. My next appointment at UW is Sept 16. So, maybe let Dr. D see the area before starting new treatment, see if this gets better, and then go from there. I think now that the purplish gray is a good thing. My body is doing what it needs to do, so I should just let it. Give it time to do it's thing.

Patience is a virtue. As is honesty. I also like being the one to make a decision for my treatment . . . Dr. K, I think, is used to frightened people who just want the damn cancer to go away. He isn't so used to having a patient like me who questions every step and who takes an active role in my own treatment. And that's a good thing. I like him because he is willing to listen to my concerns and to let me make my own treatment decisions. It is very empowering.

I want to avoid taking any kind of taxol (Taxol, Taxotere, Abraxane) chemotherapy or any kind of chemo for that matter. It seems to be that that kind of chemo, while it bludgeons the cancer, it also bludgeons your body's immune system, making it harder for it to fight any cancer that is remaining. So it comes back, eventually, and then you have to keep resorting to the bludgeon and each time, you get weaker. That isn't for me.

That is why I say that I am trying to heal from the cancer, not fight it. As my friend, R said to me last year, have I tried loving the cancer? It is a part of me after all. Isn't hating it like hating myself? The cancer is my own body's cells going out of control and my immune system is so weakened from so many artificial toxins in our environment that my body can't get it under control. This is what Chinese Medicine says is going on and I tend to believe it these days. The trick is to help support my own immune system. So I will listen to what my acupuncturist says, too, next week. She just came back from a weekend workshop with her mentor, who specializes in cancer, and she's anxious to share what she learned from him with me.

I will end with this thought: the last CT scan I had mentioned a very small suspicious spot on my liver, so I asked Dr. K what he thought about that. His answer: you are too healthy for it to be cancer.

I credit Chinese Medicine for that.

I think this all means that I will wait, at least until mid-Sept, to figure out what to do. Give my body plenty of opportunity to rest and relax. And make monthly trips to the Coast, I think.

Treatment Plan

First, I should say that there's a chance I'm eligible for a Phase I/II clinical trial which is studying a Her-2 vaccine. The protocol would mean giving me a vaccine for once/week for three weeks, then they'd harvest some of my T-cells, which they'd grow in the lab until they had "millions" of them, which they'd then reinfuse into my body over three treatments. The vaccine would go to the tumor/cancer cells and make them look more like a foreign invader and my t-cells could go to town on them.

But, I'd only be eligible for the trial if my next treatment only includes Tykerb/Herceptin.

Dr. K said that Tykerb/Herceptin is one of my options. The other option is Herceptin/Gemzar. A third option is Abraxane/Avastin. The latter has serious side effects. He would prefer I go on Herceptin/Gemzar as it has a better track record - Gemzar is a traditional chemo-type drug whereas Tykerb attacks similar cells as Herceptin, so Gemzar gives us more variety as opposed to Tykerb treating a similar characteristic of my disease.

However, Dr. K did say that my tumors are not life threatening and if I wanted to just try Herceptin with Tykerb to see how I responded, he'd be okay with that.

This would allow me to try the immune therapy, which to me makes a lot of sense. From what I can tell, there aren't many side effects. Dr. K said that they have tested these immunotherapy on just a few patients. He said that a couple of patients have had "amazing" results, but it hasn't helped some patients.

So, in the end, what's my plan?

I'm going to start with Tykerb/Herceptin, in the off-chance that I'm eligible for the study. Hopefully within about a week and a half, I will know one way or another.

If they feel that I'm not eligible, then I agreed to do the Herceptin/Gemzar route because I do believe Gemzar/Herceptin gives me more tools to fight the disease than Tykerb/Herceptin.

I'm getting tired of this egg under my left arm pit. It's becoming more tender and the tissue is becoming tighter. So, the sooner we can do something about it, the better I'll feel.

Happy Thursday!

CT Scan Results

My doc called me with the CT scan results yesterday. It was as I expected: the three tumors in my left lung are still there and they have grown over the past six months. The largest grew from 2.0 to 2.5 cm. That's 0.5 cm in six months. Compare it to 1.0 cm in the three months before that (that same tumor went from 1.0 to 2.0 cm in three months). So, Tykerb plus Femara (or whatever combination it was) slowed the growth down, but didn't stop it.

The lymph nodes under the left arm pit have sorta grown together into a 5cm mass. That will hopefully disappear with the new treatment. Other lymph nodes around the lungs (under my breast bone, near my aorta, and in my pelvic region) have also grown.

On the right side, there are four ribs, behind the breast tissue and back, that have extra calcium deposits that are indicative of healing. We don't know how long ago they were broken or how long they've been healing. (Note, the last time I noted healing ribs in Fall 2008, there were only three ribs involved, so apparently, another rib fractured.) The little nodule I felt under my RIGHT arm pit, near the breast tissue, might be scar tissue, but my doctor feels that it's probably a little "nest" of cancer cells.

For now, all of them will be treated with whatever combination of drugs we decide on.

My doctor also gave me the contact info for the UW folks - it's the Her-2 Study Group. They may accept me as a patient - and maybe even harvest some of my t-lymphocytes to create a vaccine to help stimulate my immune system to attack the cancer. I'll contact them on Monday.

In the meantime, my folks and brother are continuing to move things into the house. My brother is all moved in. We rented a U-Haul and got most of mom and dad's big stuff. I cleaned out my files . . . and have almost put all of them away. So, things are progressing slowly but surely. Whew! Yay!

Visit with My Doc

I decided to call my oncologist about my on-going rib pain today and luckily, there was an afternoon cancellation, so I went in to see him. He checked the tenderness in the ribs and found the nodule and then had me lie down and he checked my liver and then all the abdomen - and found another tender spot on my lower right side. When I asked what that could be, he said that it was possible that the nodule is resting on a nerve that extends down to the rib area.

In the end, we decided to get a CT scan - both to check on the status of the lung tumors as well as to see what's going on in the ribs. Before making a treatment decision, we want to see the CT scan results. But he's leaning toward me starting Herceptin and Gemzar, which is a treatment that I'd get every two weeks. I wouldn't lose my hair and I shouldn't get nauseous, but I would experience fatigue. If I start that, then I would probably get a port. I asked if the lymph nodes under the left armpit would get back to their regular size and he said that they probably would. In the event that they don't, they sometimes remove them and/or radiate them.

Other treatment options include this "super Herceptin", TDM-1 (or something like that), which is a targeted therapy that finds the cells that overexpress Her-2 and then deliver a traditional chemo that kills them. He doesn't know how to get it, though. Another option is that researchers at UW in Seattle are experimenting with a vaccine that stimulates your immune system to attack the cancer. He did say, however, that they have been experimenting with vaccinations like this for 30 years and haven't been successful.

I asked him about the radiation therapy that can direct radiation more precisely to the tumors in the lungs and his reply was that usually, that treatment was done for single tumors and that it might not be feasible for multiple ones. I don't think I'll give up that easily, though. I think it has to do with how much lung tissue is damaged by the radiation.

In the meantime, he said I can go ahead and stop taking Tykerb and Femara since they are apparently not working. Maybe he wants my body to recover from the treatments so that I can be as strong as possible prior to starting a different regimen.

I'd been planning to go to a conference in Miami in March and am now wondering if I should just wait and see how I do with this treatment. I'd hoped to use my tax refund to take Eddie to Orlando and Disney World ... but I think the only way I could do it (if I have some side effects from treatment) is if someone else joined me. Gonna think on that one for a bit longer.