HAZ Today - HI Next Wednesday!

I'm here at the Infusion Center, waiting to get my chemo. Turns out that they're not getting a good blood return on the P.A.S. port in my arm, so they put in some "TPA", which will break up the blood clot which can sometimes form on the catheter.

Today is my last HAZ treatment - yay! I may go back on it, but for now, I won't have Abraxane until sometime after surgery, if at all. I'm excited about the prospect of my hair growing back.

My blood work does show that I'm slightly anemic. My RBC (red blood cell) count is 3.19 x 10 to the 6/uL (normal is 3.9 to 5.1); my hemoglobin is 9.8 g/dL (normal is 11.5 to 15.4); and my hematocrit is 28.2% (normal is 36 to 46).

Also last week and through last weekend, I was taking 10 mg of melatonin at night. My normal dose is 8 mg. I hoped it would help me sleep better, but in the end, I think it was causing me to feel that dead-dog tired fatigue. I've had more energy this week since I went back down to 8mg; it probably also has to do with having two weeks to recover from the HA treatment on Jan 14.

I spent some time yesterday organizing all the reservation numbers for our flights to HI and for the car rentals. I also looked up the map and directions to the place we're staying on Kailua Beach on Oahu. I started getting excited. I found out that we won't be too far from another beach where we can kayak out to some rocks, so I think we will definitely rent kayaks one day. I also saw a satellite image of the beach - it was a sunny day, the water was blue, and the beach was light-colored sand. Heaven.

I'm worried about getting too much water while kayaking, though, because of the wound. It's about 6" x 4" (at least) large, which means that microbes could have a field day in the wound and I'd end up with a nasty infection. I need to think about the best way to protect that area . . . a friend suggested a dry suit, so I might see if it's possible to rent one.

I was also contacted by someone (S.) that I went to high school with who now lives in Honolulu, so we'll probably at least get together for coffee or something. I may also try to have lunch or something with my friend's parents, who live north of Honolulu. I might meet up with the editor of an anthropology book series. We will go to Sea Life park. I would also like to go to the swap meet/flea market at Aloha Stadium, if it still exists.

Mostly though, I expect to hang out on the beach, read a book, watch Eddie play in the water, wade in the water myself. Plenty of sunscreen for my neck and other exposed areas of my bald head, too.

I'm excited!

It was an "A" Day today - and Work!

As I mentioned last weekend, my new chemo cycle is

Week 1 HAZ - Herceptin, Abraxane, Zometa
Week 2 A - Abraxane
Week 3 HA - Herceptin, Abraxane
Week 4 Whew! - no treatment!

So, today was an "A" Day. It was fine. The appointment went long since we had to wait almost an hour for the labs. When I was finished, it was time for lunch, so my folks and I went to Appleby's.

Then I went to my office and met with one of my grad students. A very good meeting.

Then I had to talk to my office manager/accounting guru about a variety of budget-related topics.

Then back to my office to try to find a file that I haven't been able to find for several days. I also had to talk to my friend and colleague in Hawaii about some of the budget stuff and I searched for the file while I talked to her.

And, then!!! I found a file I had been missing for months!!! And, then, about 10-15 minutes later, I found the newer-lost file!! Both were in a drawer I had searched multiple times. I told her that talking to her helped me find the files and then she mentioned that they found their way back to this dimension from another one. I told her that I needed her help to open a portal between the dimensions! Hee hee! For me, I think the steroids I had in my pre-meds had kicked in.

I picked up Eddie about 30 minutes after that and I was fairly silly.

Yep, steroids. That's my story and I'm stick in' to it!

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!

Darnit!! Not surprised, though

As you all know, I had these new satellite tumors growing in and around the wound. I counted as many as 17 or 18 today. So, I knew my CEA tumor marker would go up. I thought it would by a few points, but instead it went up to 17.1.

Crap. Lost a lot of ground in the last month. My theory again is that Abraxane worked as long as I had a bunch of Herminator-2 cells running around. However, Abraxane is a non-discriminating chemotherapy - it kills bad as well as good cells. So, my lovely Herminator-2 cells have been knocked down by Abraxane - a couple of weeks ago, it was about 1/3 of what it was at the beginning of October. Today, my white blood cell count went back up - it doubled from two weeks ago - but it's still not the strength that's needed.

So, it was necessary to bring in something new - I'm glad we added Herceptin today with the new CEA number. I'm not out of the woods yet. I need to recommit to not eating sugar or processed foods and to practicing qigong and meditation more. I need to do whatever I can to help my body knock out the cancer. I think the high CEA today was a message to tell me to not rest on my laurels . . . or to rely too much on just one thing, like the Abraxane.

It also means starting to say no again to things at work, including any kind of long distance travel. The farthest I want to go is Hawaii or Alaska. I need to stay close to home and rest. I need to keep my life as unstressful as possible. A couple of new things cropped up at work today and it made me feel overwhelmed. So, it's time to retreat.

I expect that I won't sleep well tonight. I might use the time to write and get a bit ahead with work projects. So, I got a plan.

Here's the CEA history:

Anyway, here is the history:

CEA
1/2008 - 1.2 ng/mL
3/2008 - 0.9 ng/mL
6/2008 - 1.0 ng/mL
8/2008 - 1.1 ng/mL (need to double check this number, but it was in that 0.9 to 1.2 range)
9/2008 - 0.5 ng/mL
10/2008 - 0.9 ng/mL
10/31/2008 - 1.2 ng/mL
11/28/2008 - 1.2 ng/mL
12/30/2008 - 1.1 ng/mL
3/2/2009 - 1.4 ng/mL
4/8/2009 - 1.6 ng/mL
5/5/2009 - 1.9 ng/mL
6/4/2009 - 3.0 ng/mL
7/2/2009 - 3.7 ng/mL
8/3/2009 - 4.2 ng/mL
8/31/2009 - 5.1 ng/mL
10/2/2009 - 5.7 ng/mL (or was it 5.8?)
11/2/2009 - 7.6 ng/mL
11/30/2009 - 10.5 ng/mL
12/28/2009 - 13.2 ng/mL
3/8/2010 - 22.9 ng/mL
4/22/2010 - 28.9 ng/mL
6/7/2010 - 46.3 ng/mL
7/19/2010 - 44.3 ng/mL
8/19/2010 - 50.9 ng/mL
10/05/2010 - 41.6 ng/mL
11/04/2010 - 7.1 ng/mL
12/03/2010 - 3.4 ng/mL
12/30/2010 - 17.1 ng/mL

Sigh. No rest for the wicked, huh?

Oncologist Today

I saw my oncologist earlier today and showed him the wound with the satellite lesions. He was a bit disappointed because he had heard that my tumor markers had really gone down dramatically. But he agreed that I had plateaued - or rather that these satellite tumors are apparently resistant to the Abraxane. So, we will change it up again.

I told him my theory about not having t-cells to fight the cancer along with Abraxane. He will talk to Dr. D at UW about this, I think, to make sure I'm telling the story correctly. I wondered if maybe I go off Abraxane and allow my lovely Herminator-2 cells to regenerate. He didn't really think that that was advisable. I don't blame him.

He will also talk to Dr. D in Seattle about using Imiquomod with Abraxane, although it's his understanding that Imiquomod (an ointment) usually works only on superficial lesions whereas my lesions are deeper in the skin tissue.

We also brought up other options. One is to add Herceptin back into the mix with Abraxane. Another is to just do Herceptin. And, the fourth option is to do surgery.

So, a variety of potential courses of action. I'm okay because I know we'll do something. I do have faith that by the time we knock out those satellite lesions, by whatever method, I'll be in some kind of remission. So, just a few more months . . .

Treatment Update

Since I wrote my last post, I have had both acupuncture and an Abraxane treatment.

I told my acupuncturist that the satellite tumors aren't going away and I have more of them, plus the whole shoulder joint feels heavy and swollen. So, the acupuncture treatment was designed, in part, to get the energy flowing better. She also gave me an herb that helps with lymph swelling and tumors. I already have greater range of motion in that shoulder and it feels less heavy and less painful. Yay! Plus, I'm doing qigong. The herb also seems to have helped the acne flare-up because it helps remove toxic heat. My face is clearing up!

In addition, I mixed turmeric with aloe vera gel and have been applying that to the wound; I also applied a little bit to the satellite tumors that I see. We'll see what happens with those . . .

As for Abraxane, my total neutrophils count was below the threshold, so I only got half a dose. I hope this means that I'll have a better chance of growing Herminator-2 cells in the next couple of weeks.

So, I'm feeling better. Have a good Sunday!

Loves Acupuncture!

The last couple of days have been kinda tough. I'm worried about the satellite lesions as well as my finances.

As I said in one of my posts yesterday, both the wound care nurse and the surgeon felt that I've plateaued and/or the cancer in the skin in the wound is growing again and that Abraxane may not be as effective as it had been. That's not the kind of news one wants. But it confirmed what I've been feeling for the last week or so. I also feel as if my body is not able to clear the toxins from the chemo as well as it had been - my kidneys were achey as were my leg muscles. So, my acupuncture treatment today was partly geared toward removing the toxins, partly toward giving me energy and partly toward supporting my immune system to fight the tumors. Afterwards, I feel as if a big weight was lifted off my shoulders and I felt happy. I actually felt quite chipper. I finished a lot of paperwork at work today - the final report at NSF, the IRB close out, a change of grade for a student whose final paper got lost in email, and I updated my CV. Yay!

I also realized, as I lay on the acupuncture table, why I have been feeling conflicted about talking about my finances. A couple of friends have asked if there was any way they could help. I was not sure how to answer.

On the one hand, my medical expenses have been well over $5,000 this year. This month, for instance, I've spent about $400 in acupuncture treatments. I'll get reimbursed, eventually, about $200 from insurance (they pay 70% of the actual treatment, but not the herbs). But there have been about $60 in unreimbursed acupuncture treatments and $140 in herbs. The five-mushroom blend that I take is about $65 - and three of the mushrooms have anti-cancer properties. There are herbs that help me sleep, help with digestion, boost my immunity, and for energy. I also had my out-of-pocket expenses, plus travel to Seattle (and a couple of trips to Portland for my son), plus I've had to get 2 crowns replaced ($800 out of pocket) because cancer treatment affect the level of saliva in my mouth, which means that bacteria can thrive and so I ended up with cavities under the existing crowns. While I had help with some of my expenses to Seattle, which covered about 2/3 of the expenses, I still had about $750 or more in out-of-pocket expenses. That represents about 12% of my total take-home pay this year. (I just realized one reason why I'm not paying down my HELOC as fast as I might like - a lot of my discretionary money is going toward medical bills.)

On the other hand, I have splurged on myself - buying hats and scarves, taking little trips to the Coast or to Central Oregon, buying myself a Mother's Day gift, etc., stuff for the house. So, obviously I can afford to do those kinds of things which some people might consider to be luxuries, I obviously do not need to ask readers for any donations. In other words, if I scrimped and saved and didn't spend money on things like I have, then maybe I wouldn't be as stressed out about my finances like I am. It's my fault so therefore I should just tighten my belt.

So, when people offer to help me financially, I don't feel like I can ethically accept money from them because if I can afford to buy myself a hat or a pair of pants, then I don't need the money after all. That's why I feel conflicted. Plus, in our society, unless things are really bad, it's not right to ask for money. I am much better off than a lot of people.

This is why I love acupuncture. I feel lighter and happier today. In fact, after my treatment, my left shoulder and upper arm (which had been feeling heavy) felt lighter and healthier. I plan to start putting a turmeric/aloe vera gel paste on the wound since turmeric has anticancer properties. I also realized why I felt conflicted about the finances. I'd like to ask for money, but I don't feel like I should ask for money because I have splurged on myself. Just realizing why I am conflicted makes me feel better! I want to thank my acupuncturist for helping me today! Thanks, Brodie!

Man, having cancer is complicated! Isn't it?

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!

Rest. It Does a Body Good.

Resting. I need to do more of it while I'm on Abraxane. I had a treatment on Friday, I rested that night, but couldn't get to sleep until about midnight. I slept until about 7:30am on Saturday and then participated in the Psycho-Emotional Repatterning workshop all day.

The workshop was really informative and I enjoyed meeting the other participants. I learned more about Chinese medicine and the philosophy behind it. It was also brought together a lot of things that I have been learning. So, it was cool.

I took it easy Saturday evening and night. Mom and dad rented a movie called "My Name is Khan", which was interesting because the main character had Asperger's Syndrome. It was also a movie about intolerance towards Muslims in post 9/11 America. I enjoyed it.

I slept in until about 8am on Sunday, then relaxed and worked on the grant proposal for awhile, then ran errands, picked up Eddie, found some material for a new jacket kuspuk for me, and had coffee with a friend. Then, after dinner, I had to work on the grant proposal. We already had an extension and it was due today. So, I was up until after 11pm. I didn't finish the grant proposal, so I decided to ask my program officer for yet another extension.

I had to get up about 6:30am. Went to work. Left a message for my program officer and emailed her. But in the meantime, I had so much to do - I needed to grade papers (put that off until later this week), I needed to upload grades into Blackboard, I need to do IRB paperwork, I needed to prepare for class, I got an email about having to make minor changes to a supplemental request, and then I agreed to be interviewed by a student via skype. I quickly became overwhelmed today.

I also felt really fatigued and it occurred to me sometime this morning that I was feeling so tired, not just because I was up late, because my fatigue was more than just not enough sleep. I'm feeling this fatigued because of the chemo. Abraxane causes anemia.

I finally managed to prioritize what I could get done this morning and I decided to ask a couple of people to help out on some of the tasks I needed to do. And, then, an angel in the form of my program officer emailed me and told me that we could have a little more time before I needed to submit the proposal.

A lot of weight lifted off my shoulders.

So, even though I feel fairly good under this chemotherapy regimen, I was reminded today that I do get fatigued.

I had been operating like the Abraxane was no big deal since my mood is good and I'm getting such good results.

But it does affect my blood counts. I need to remember that and to take time to rest.

Which is all to say that I am still not able to do as much as work as I might want to.

Rest. It does a body good.

Abraxane Today

I had an Abraxane treatment this morning and it went off without a hitch. I didn't get much work done, though. But that's okay. My blood counts were on the low end, but were high enough for treatment.

I then went to lunch with a friend - I had chicken noodle soup and because I had a cough (maybe from my bagel, which was plain white - I wanted multigrain as it's better for me), the soup was a great choice as it stopped my cough.

I just want to get over this cold.

I was supposed to make an appearance for dinner at the Longhouse this evening, but luckily, the guest (Tom Arviso, publisher of Navajo Times) had to cancel his trip, so now I get to stay home and rest. I feel guilty as I haven't been able to get to the Longhouse all term.

But then I remember that I've had at least 60 if not closer to 70 appointments since the term started in mid-September.

So, the rest of tonight, I'm resting.

Tomorrow, I am attending a workshop entitled "Psycho-Emotional Transformation" which will be taught by my acupuncturist. We'll be talking about Chinese medicine theory and will get some qigong moves and acupressure points to help patients unstick stagnant energy. I'm sure that I'll gain some energy from this session.

And, Sunday, more work on the grant proposal . . . it's due on Monday.

Unprecedented? Then again, maybe not.

Today, as I received my Abraxane infusion, the nurse and I chatted about my low CEA numbers. It eventually came out that they usually do not see (or maybe have never seen) anyone respond as well to the Abraxane treatment as I have. They haven't seen the CEA drop so quickly in just one month. We talked about how my incredible response is more than likely related to the UW immunotherapy and that the two therapies are working really well together.

Shall I saw it is unprecedented? Maybe not. Maybe in the context of my town, but the UW doctors did say that patients in the same trial as me tended to have results like mine - that after immunotherapy, the standard treatments all of a sudden start working really really well.

And, then again, maybe not. A good friend of mine told me today that he put my name into a reiki prayer pool this past month. I know a lot of people in my community and all over Alaska are praying for me. Other people are sending me prayers, blessings, good energy. My family takes care of the housework so that I have more energy to devote to healing or resting. My medical care team, including my acupuncturist and my therapist and the wound nurse and the infusion nurses, give me great care. My colleagues at work support me. My friends give me good advice. Other cancer bloggers are great role models for how to live life and how to handle side effects and also for their sheer perseverance to live.

I have also made changes. I have limited if not almost completely eliminated dairy and white flour from my diet. I am still trying to eliminate sugar. I don't drink alcohol as often. I try to practice qigong. I wake up each morning and try to decide that it will be a good day, even if that's not how I'm feeling, but by reminding myself of what I am grateful for, it gets easier to make that choice. I try ask myself every morning, "Would I rather spend my day pissy? Or sad? Or silly and happy?" I have repriortized work duties and how I choose to spend my time. I endeavor to be as stress-free as possible and part of that means not taking things personally or acting defensively with difficult people and reacting in a more mature, calm, deliberate way, rather than reacting rashly. I accept help when it's offered and then I try to "pay it forward".

I think that all of these things have culminated in my current, happy state of affairs: dropping tumor markers, shrinking and disappearing tumors. And, the realization that I have a wonderful, beautiful support system. There have been reports by other doctors and practitioners of Chinese medicine of people who were able to turn their cancer prognoses around. There are reports of cancer spontaneously disappearing. I have tried to learn as much about what these patients do and what kind of medical care they seek because the people who came before me have set these precedents. So, no, it's not unprecedented. I have role models to follow. I have great friends who give great advice. But even if it isn't unprecedented, it's still great news!

Thank you everyone! Every little bit helps!

Abraxane Side Effects

I think I mentioned in a blog post a couple of days ago that one of the side effects I am experiencing is stomach cramping. When you read the list of potential side effects, they say "stomach upset" or "stomach pain", but in truth, it isn't painful. It just feels like a tightening or spasming of the tummy muscles. It's not even uncomfortable. Just weird. [WARNING: don't read the next sentence if you're squeamish.] And, I have some diarrhea and/or soft stools.

I should also say that I think I've lost a few pounds since starting Abraxane - maybe 4-6 pounds or so. My appetite is about the same, so either my body is using a lot more energy to whisk away the dead cancer cells or my body isn't absorbing the food I eat as well as it should. It's the latter, probably. I haven't minded the weight loss because I felt at least 15 pounds or more over my ideal weight. I'm about 11 or 12 pounds less than I was in June. Partly because of the recent weight loss due to Abraxane, but also because I think I've lost some fluids from the skin wound - I have less lymphedema than I did in the summer. Dietary changes have also contributed, like cutting out white flour recently and dairy products and I'm really trying to decrease my sugar input. I also haven't been drinking as much beer since summer. If I lose more than 5 pounds, I'll get worried. But losing another 5 puts me at the ideal weight for my height and bone frame.

So, I told my colleague, S., about my stomach cramping symptoms and wondered why. S. knows how to get into the medical literature that reports actual studies.

He told me this morning that it turns out that Abraxane can destroy the inner lining of your stomach. He suggested that I take Probiotics to help with digestion and to increase the good bacteria in the stomach. And, maybe occasionally take Mylanta or something like it.

I then mentioned it to a friend and colleague (K.) at lunch today and she suggested a supplement called "GI-Encap", which repairs the lining of the stomach. She also mentioned something called HMF-Intensive, which is a probiotic.

So, I will be adding those two to my supplement repertoire. At the moment, I take 1) CoQ-10 (helps your cells work more efficiently for more energy; may also have anticancer effects), 2) Vitamin D-3 (I had low Vitamin D levels and it also has anticancer properties), 3) turmeric (anticancer properties), 4) Chinese herbs (a five-mushroom blend (anticancer), Ji Xue for building blood, Rehmannia and Scrophularia also for building blood (I think), Shen Ling Bai Zhu Pian (to help my body digest the Rehmannia and for digestion issues generally)), 5) melatonin (anticancer properties), plus a 6) Chinese herb for sleep. I also picked up 7) Zong Gan LIng at the co-opera yesterday for "advanced colds". The latter helps with symptoms and also helps to get over your cold more quickly. I started taking it yesterday and I have to report that it really does help relieve cold symptoms, but without leaving my mouth dry from the antihistamines in western cold medicines or making me feel zonked out or tired. I feel normal and there's less stuffy/runny nose and post-nasal drip to worry about. I also think that my cold is already a lot better.

Having cancer isn't cheap. That's where a lot of any "disposable" income I might have goes to. I'm not complaining, mind you, because in general, I have been feeling fairly well lately, with good energy, no pain, etc. But thank goodness for good health insurance and for a full time job.

Visit with the plastic surgeon . . . and side effects

I saw the plastic surgeon today and ultimately, he said that he would do the lat-flap surgery (use the latissimus muscle under my armpit) and that ultimately the timing of the surgery would be up to Dr. F, my surgeon. So, I'll wait a couple of days and then call Dr. F's office to schedule an appointment and talk about timing.

There's a part of me that wonders if the whole area would eventually heal itself. However, I remembered that the wound probably wouldn't heal as long as I'm on Abraxane. Dr. K would like for me to be on Abraxane for six months, which means that I'd end up with an open wound for at least that long. And, with an open wound comes the risk of infection, like I had last month. I also have a surface infection, too, which looks like a green discoloration on my dressings. It's "pseudomonisis" which is the bacteria that grows in your vases when you have flowers. I've been trying to get rid of it for almost a week now. It got a little bit better after I saw the wound care nurse - as she cleaned the area really well - and even though I've cleaned it with iodine once and have been trying to flush the area with saline, it's hard for me to do this without getting saline everywhere . . . Anyway, I guess I think that that armpit area seems to get infected easier than the other wound I had, so I might as well get the whole thing repaired to decrease that infection risk.

I told Dr. H (the plastic surgeon) that Dr. K (my oncologist) would be willing for me to take about a 6-week break from Abraxane in order to have the surgery, and probably even more so now that my tumor marker dropped so much in just one month, so that there will probably be very low levels of cancer cells running around in my system. Then, after I am recovered from surgery, I would go back on Abraxane to knock the rest of those cancer cells out.

I also asked Dr. H if he could trim the "dog ear" that was left at my beltline from the reconstruction surgery. He said that he would. I also asked if he could drop the implant down to match with the TRAM flap and he said that he'd rather not mess with it, since I have such a major wound on the armpit and he didn't want to open anything else up. If, however, cancer or bacteria got onto the implant, he said that it would have to come out. So, in the end, he said that he might bring in a spare implant and would try to drop it farther down into the pocket, so he might be able to make me more lopsided. That is, if the implant had cancer or otherwise had a risk of infection.

So, in terms of other side effects, I wanted to report that my scalp is now breaking out in zits. It's also pretty tender in some places. Now, I have to figure out how to take care of the scalp - one website said to treat it as you do your face, with milder moisturizers and cleansers.

In addition - and forgive me if this is too much information (Daria at LIving With Cancer also wondered about reporting these side effects the other day in her blog; in the interest of passing on my experiences to other cancer survivors, I'm telling my readers what's going on) - I have had some constipation (from the anti-nausea meds). I have some Chinese herbs from my acupuncturist that seemed to help me become regular again sooner than I did previously. But, last night, my stomach muscles starting cramping again. I think I reported that it seemed to do that the evening of my treatment. But this time, it happened three days later. It's been acting up all day, too. It seems to cramp up a couple of hours after I eat. And, I have had some mild diarrhea off and on all day and the cramps seem to get a little bit better afterwards. So, I started wondering if the cramping was happening in my intestines rather than in my stomach - and that they are cramping trying to get the food processed through my digestive system. So, I'm trying to drink lots of water. And, it's all complicated this time by having a head cold and taking some nasal decongestant medicines. (I am going to do my best to avoid crowds and public places while I'm on Abraxane - I don't need to deal with colds on top of my other health issues!)

So, a talk with Dr. F is in order sometime this week. I see the wound care nurse tomorrow and will also see what she says.

This Month's CEA is . . . Drum Roll, Please!

7.1 ng/mL

That is a 34 point drop from last month.

Anything 3.8 or less is "normal".

The last time it was this low was a year ago. In November 2009, it was 7.6.

Cause for celebration, eh?

I had zometa and Abraxane. Maybe I should say, it's an "A to Z" Day. I also had good blood counts - my hemoglobin was 11.1 thanks to the blood transfusion.

Anyway, here is the history:

CEA
1/2008 - 1.2 ng/mL
3/2008 - 0.9 ng/mL
6/2008 - 1.0 ng/mL
8/2008 - 1.1 ng/mL (need to double check this number, but it was in that 0.9 to 1.2 range)
9/2008 - 0.5 ng/mL
10/2008 - 0.9 ng/mL
10/31/2008 - 1.2 ng/mL
11/28/2008 - 1.2 ng/mL
12/30/2008 - 1.1 ng/mL
3/2/2009 - 1.4 ng/mL
4/8/2009 - 1.6 ng/mL
5/5/2009 - 1.9 ng/mL
6/4/2009 - 3.0 ng/mL
7/2/2009 - 3.7 ng/mL
8/3/2009 - 4.2 ng/mL
8/31/2009 - 5.1 ng/mL
10/2/2009 - 5.7 ng/mL (or was it 5.8?)
11/2/2009 - 7.6 ng/mL
11/30/2009 - 10.5 ng/mL
12/28/2009 - 13.2 ng/mL
3/8/2010 - 22.9 ng/mL
4/22/2010 - 28.9 ng/mL
6/7/2010 - 46.3 ng/mL
7/19/2010 - 44.3 ng/mL
8/19/2010 - 50.9 ng/mL
10/05/2010 - 41.6 ng/mL
11/04/2010 - 7.1 ng/mL

Ce-le-brate good times, c'mon! It's a celebration!

We like downward trending numbers! : )

Wow

I saw the surgeon yesterday and there wasn't a lot of necrotic tissue that he could clean out. He and his nurse were also quite impressed to see how much the area had changed in just one week. No more raised mound, no more Mount Herminator. The area now looks more or less like the right side. Except of course, it has a deep wound that goes down to the chest wall - about 4 cm.

It isn't draining as much. If the plastic surgeon is available, it looks like I may have the surgery in December, after the next round of Abraxane.

Also, more of the satellite tumors seem to be shrinking and disappearing as is the swollen lymph nodes elsewhere in my body.

Had lunch yesterday at Pastini's with the other models from Puttin' on the Pink (now, POP for short). I thought there was only four of us, but it ended up being about 11! It was fun! Randy Millstein, our photographer, was also there and he distributed CD's of photos of the night, including me doing the shimmy-like surf move! AS soon as I can download the photos, I will post them.

Another of the models, M, knit a pink winter hat for me. And, my colleague N gave me a new scarf and earrings plus she gave me four more beautiful scarves on long-term loan.

Eddie and I are heading to Bend today, for the night. We'll see a friend and colleague there - she has a new baby girl. I think we'll also talk about work some. And, I'll take Eddie to Sun Mountain Fun Center to play at the Arcade. We may even play in the snow. Another friend, B., who went to the coast with me last month, will join us for the trip.

All in all, life continues to be good. Good news on the cancer front; friends are giving me gifts again; I get to celebrate life this week-end. I love holidays!

A big thank you to M and N for the gifts! As I've said before and I'm sure I've said again, I have great friends!

Things are good

Today was a day when I didn't have any medical appointments! I also feel fairly normal and not tired. That is due, of course, to my blood transfusion yesterday. I thought that I might feel this burst of energy, but instead, it's more like my normal self. I like that.

I saw the wound care nurse, first, yesterday. She said when she saw how much the wound had changed in one week that it was "exciting". She said the same thing last week, too. So, I asked her why she was so excited at the changes in my wound and she replied that usually, when she and others see a cancerous wound/tumor as large as mine was, it usually keeps growing and eventually the patient goes home to die.

Whoa. I didn't realize it was as bad as that. Good thing, too! Anyway, she said that the whole area seems to be responding very well to the Abraxane treatment (which I believe is working in conjunction with the immunotherapy I had through UW). The wound/necrotic tissue has gotten smaller, from a high of 12x15 cm to what is now a 9x7 cm area. In only a few weeks, too. So, yes, I guess that it quite amazing!

I had the blood transfusion yesterday and it took about 5 hours from beginning to end. It went off without a hitch, as far as I can tell. I worked some, I called and made/rescheduled appointments, I played on facebook, I answered work emails, etc. I love all those nurses up there. They are very nice and sweet.

So, today was a good day. I met with my grad student; she now has a plan of action for the next few months. I taught my class. I have so much material I want to share with them and I always run out of time. But I guess over prepping is better than under prepping. It's a good class.

Then, I received an email about a co-authored journal article submission after I returned to my office and it got me all riled up. I won't go into details, but it seems that personal politics played a role rather than an objective reading of the article. I wrote a draft response - sent to a friend - so I can get it all out of my system. Otherwise, I might sit and fume about it.

Then again, maybe not. I think I'm changing inside and am learning to let go of stuff easier. Plus, I'm dwelling instead on the good news that after only three Abraxane treatments, I seem to be having an excellent response. Oh, and I got two cute crocheted hats in the mail today from a friend from high school. Thank you, C! Reason to celebrate! (I've said that before, huh?)

Ah, so no complaints. Life is good.

That's the Plan, Man!

I saw Dr. K today . . . it was great to confirm with him that the whole area with the wound has changed - in particular, the satellite lesions are smaller and a couple of the lymph nodes are smaller. So, I am responding to the Abraxane treatment. He asked how the treatment is going in terms of side effects, and other than fatigue and hair loss, it's doable.

He also took a look at the wound - morbid curiosity he said - and I'm glad he did so that he knew better what the surgeons and the wound care nurse are seeing, And, he's willing to let the surgeons decide if and when we do surgery to remove the rest of the diseased and dead tissue and to use plastic surgery to rebuild it.

Which means that I do the next round of Abraxane treatments, through November, and if the surgeons decide to go forward with surgery, then I'd go ahead with it in mid-December. However, if the plastic surgeon is away and I end up waiting until January, I will get the third round of Abraxane treatments in December, then take a break and do surgery.

After I recover from surgery, then I would do another few months of Abraxane. AS long as I keep responding, then Dr. K would keep me on it for six months total (with a break for surgery, if that is what we decided to do).

Fine with me. So, I've got several months more of being bald. I will definitely get a Henna tattoo at some point! : )

Pictures - Thinning Hair to Bald to HATS!

This past week, my hair started falling out.  The nurses said that some people only get thinning hair with treatment, so initially, when I started seeing a few strands on the pillow on Tuesday, I just had it cut short and spiky on Wednesday in case I kept some of the hair.

Front view

A side view

But the next day and Friday, more and more started falling out.  It's starting to look rather thin.

Thin Hair!

On Saturday, I met some of my former students (now friends) for coffee.  I got a bite to eat and had some leftovers that I thought I'd give to Cat, but when I looked down on my plate . . . I saw a strand or two of my hair in the eggs!  Yikes!  It was falling out like crazy.  Soon, it looked like I had mange!  I decided then and there it was time to shave it all off.  But first, the search for hats started:

Cat in the Hat

Cat and I went to Goodwill.  She helped me pick out two, plus several scarves to keep my neck warm.  Cat was looking for Halloween costumes.  

After Goodwill, I picked up dad and we went to Kohl's in Albany.  I found a couple of cute hats, a scarf, a pair of gray cords, a cute charcoal gray jacket, plus some clothes for Eddie, mom, dad, and Scotty.  (Hey, things were on sale and I had a 20% off coupon.)

Then, it was off to Lebanon to see Amy and Josh, who had a few hats to give me.  I asked if they had an electric razor - they did - so I asked Josh to shave my head.  We went into the back yard and voila!

I'm bald again!  Thanks, Josh, for shaving my head!  No more finding hair in my food!  : )

Now I'll model the hats . . .

Goodwill Hat

Amy and Josh hat

Kohl's Hat

Another Kohl's Hat

Amy and Josh Hat

Amy and Josh Hat (although Heather claims it's hers!)

Another Amy and Josh Hat

Another Amy and Josh Hat

Goodwill Hat

This is a hat Joan gave me eight years ago, the first time I lost my hair to chemo.  She bought it in New Orleans!  Thanks, Joan!  It's one of my favorite hats!

Seriously, I don't mind being bald.  For the most part, the side effects of Abraxane are doable.  In fact, I feel emotionally happier and lighter than I have for months.  Literally, months.  Then again, maybe I feel "lighter" because I have no hair up there!  Ha!!!

Abraxane Side Effects

I've had two Abraxane treatments so far. In terms of stomach/nausea/digestive problems, I seem to only get a gurfly stomach that night. Also, the anti-nausea meds cause some constipation, but that goes away after a day or two.

The biggest side effect is fatigue. This is explained by the fact that Abraxane affects your blood counts; when they tested me last week, I was anemic. My red blood cell counts (total red blocd cell, hematocrit, hemoglobin) were low, especiallyt he hemoglobin at 8.3. They were potentially thinking about giving me a blood transfusion, but my doctor thought I was still okay.

But I have certainly been fatigued. I exacerbated my fatigue with staying up too late on Friday and Saturday nights. Friday, I went to a grad student's house for dinner, but they didn't eat until 9pm, so we didn't leave until 10pm. And, Saturday, I was at Puttin' on the Pink all day. Sunday, we spent five hours at Bauman Farms in Gervais. I spent the last hour or so in the food tent while Eddie hung out with his cousins in the Dark Maze and then the Obstacle Course and the inflatables, which were all close to the tent. It was at the end of the day, so there weren't as many people. I got to rest and Eddie got to play. Also, dad drove up and back - a huge thanks for that! Thanks, dad!

I got to bed early enough last night, but I'm still fatigued. I got through class, but partly because I could lay down on the couch in my office and read and prepare for class.

I also feel that at least one or two of the lymph nodes and maybe some of the satellite lesions are smaller (lymph nodes) or softer (satellite lesions), which I think indicates that Abraxane might be working.

That's a good thing.