Aggressive treatment

I saw the doctor yesterday who assured me that I am strong even if I don't feel like it. She said radiation is very aggressive treatment and at the moment I need all the rest I can get to heal.

She also said that I should be in no hurry to go off the pain meds because the more comfortable I am, the better I heal. I should expect to be tired for several weeks and will probably be on pain meds for awhile.

I asked why my hands shake and ahe said I am probably just weak now because my body is doing so much to heal from radiation.

My acupuncturist told me that this is my most challenging time with this disease and reminded me that now I am in a very yin time - I just need to hole up and rest. But yin eventually turns to yang so eventually I will gain more energy. The only constant is change.

I occasionally get blood in my urine and I think I notice it more when I don't drink as much water.

The wound in my arm is weeping more, sometimes with more blood. The tumor is shrinking, though.

I get Herceptin tomorrow. Hopefully that keeps other tumors at bay for awhile. Imreallymstart need to gain strength.

The doctor said fact that I don't have an infection and am maintaining my weight is good.

Please let me get through these next 8 treatments. Injust wish I felt better.

Will start arm radiation tomorrow

I went to radiation today and thought that I would start arm radiation along with WBR today. In the end, they weren't done planning and have apparently decided to do 20 sessions instead of 15 so they can do a lower toxic dose.

So the next four weeks will be eaten up by radiation.

I hope that those sessions won't be as bad on me as the WBR. I only have seven more sessions of that.

Otherwise saw the physical therapist today, who stretched my arms and shoulders.

In the meantime, the floor is done on the deck. Yay!

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!

Tumor Marker Update!! Stray Cat Visualization Working?

Today was what I am now calling a "Z" Day - now when I go in to get my monthly Zoladex in my abdomen (Zoladex shuts down my ovaries), I will also get Zometa intravenously. Zometa makes my bones harder and more difficult for cancer to lodge there - remember that the cancer was in my bone marrow, not on my bones. Zometa keeps it that way.

While I was there, the nurse mentioned that she was going to have to get four vials of blood for various tests - one each for the two tumor markers CA 15-3 and CEA, one for the CBC (blood chemistry - red and white blood cell counts), and one for a CMP (metabolic panel - i.e., calcium, potassium, etc.). I asked if they did the tumor markers last month and they did, so I asked what they were.

The CA 15-3 was 14.5!!! Down from 18 in August! The story of the CA15-3 levels are as follows (below 31 is "normal"):
Sept 2007 - 23
Jan 2008 - 31
Mar 2008 - 36
June 2008 - 23 (started radiation that month)
Aug 2008 - 18
Sept 2008 - 14.5 YAAAAAAY!!!

And, my CEA was 0.5. Normal is below 3.8. My CEA has been either 1.1 or 0.9 - three or four of them since Jan 2008. In September, it was half what it was earlier this year!

HOW COOL IS THAT!!!

When chatting with my oncologist (see that post here), I told him that now that we shut down the "cancer cell factory in the breast area", I could now turn my attention to my bones. He agreed that he felt the cancer cell factory was indeed shut down.

And, I guess it really is! Radiation, visualization, the meds, the herbs, acupuncture, qi gong, meditation, reiki, etc., is working, I tell ya!

Also, for the first time in a long time, my blood counts today were normal! Usually, I am slightly anemic with slightly low red blood cell and hematocrit levels. Well . . . they were in the normal range! My acupuncturist has me taking a Chinese herbal supplement called Gynostemma, which helps to "build blood". It says to take 3 to 5 3 times a day, which I was doing but when I started Xeloda and Tykerb, I started only taking 2 at night so as not to give my system too much to handle. A couple of weeks ago, after an acupuncture treatment in which we are trying to strengthen my blood (and also the bone marrow, which produces blood cells), I started taking 2 of them 2 times a day. Guess it's working, huh?

Not even having to get poked three times today will take away the good feeling associated with that news! (I jinxed the poor nurse today - several months ago, after someone poked me twice and didn't catch a vein, she came in and was able to do it. She said that I shouldn't have said that because she probably wouldn't be able to find a vein. Well, she couldn't. She felt really bad, so another nurse came in and found one. Got the job done.)

A good day, wouldn't you say? : )

I'll say it again, but stronger - it's a great day!!!

Still kinda reeling

I saw my rad onc and my temp was 101, even though I'd taken 500mg of Tylenol about 3 hours before. Then, she looked at the wound and she said that there was some "gunk" in it and thought that I should ask the plastic surgeon for an antibiotic. So, I did and I just took it.

I cried while I was there, more from anxiety because I didn't know what to expect and my rad onc also said that it's probably due to the fact that I don't feel well with this fever - no energy, etc.

She also checked my tumor markers from the blood tests I took last week. And, the CA-15.3 was 18!! Down, even from June's count which was 23! Anything lower than 31 is normal. In March, it was high as 36. YIPPEE SKIPPY!

There's some uncertainty, now, because I don't know how long this open cavity (where the tissue expander was) will take to heal. Having a vacuum wound pump in there will be interesting. Don't know what to expect. I guess I'll have my answers tomorrow.

I think that's why I'm still weepy - too much uncertainty.

My rad onc did say that it will heal and that this is the worse that'll be. And, no more radiation! That's what I need to focus on. I just feel bad because I can't do too much and my son gets bored.

Okay. Focus on the positive. I guess it's time for a gratitude list.

I think it's a ruptured tissue expander

I finally got up the nerve last night to really feel those two areas - one that's more black and the other that's turned clear but sorta grayish in color. I didn't want to feel them if 1) it was healing tissue or 2) it was cancerous tissue. But the area grew a bit yesterday and exposed more of the surface - so I felt it and it feels like plastic.

I think radiation caused the tissue expander to rupture. My body's trying to get rid of this tissue expander and that's why I have a fever. When I changed my dressing today, the whole area was clear, with a grayish tint and it was poking out more. Sorta like those cones Madonna wore for a bra in one of those videos, but it was pointing about 45 degrees to the right instead of straight ahead.

That's what I think anyway. I find out for sure at 10:15am this morning, when I see my plastic surgeon. If I have a chance, I'll post a blog about what it is and what he plans to do. If not, I may be out of touch for a few days.

Yippee Skippy!

As Eddie says, "I AM ALL DONE". With radiation, that is. Yippee Skippy! My skin is tender and sore again, but now I know that it will feel better in a few days by using the soaks and the silvadine ointment. I gave the techs a thank you mandala (and forgot to get a picture) and told them I hope I never have to set foot in that place ever again, no offense, of course.

In other news, Eddie is back up to snuff - with an appetite and no fever. I'm still feeling low on energy and I plan to rest as much as possible today. Dad and I finished painting the white wedges on the Big Wheel - pics will be posted later, after it dries.

Other than feeling low energy (with chest congestion), my mood is good.

I need to remember that radiation does bring with it some fatigue. After nearly two months of daily radiation treatments (with breaks here and there), I guess I have a right to be tired.

Have a great week-end everyone! Will post photos of Eddie's party next week!

Another radiation update

Hi everyone,
I had my first "booster" radiation treatment today. Fortunately, the past day or so, the radiation burn has mostly healed. I have four more booster treatments and will finally finish radiation treatments this Friday! YAY!!

I did resist radiation treatments because I didn't want to risk losing the ability to have an implant. But it was nice to hear from my plastic surgeon awhile back that there is a Plan B for reconstruction. Next month sometime, I will ask about that process.

In the meantime, late last week, I noticed two black spots within the open skin wound. I asked the doctor about them today and her opinion was that these two black spots represented tumors that were forming and that the radiation has killed them and the black spots are dying cancer tissue. YAY again!! More evidence that the radiation is doing what it's supposed to be doing!!

I was only 1-for-3 playing softball yesterday, so Deechiro won't be in the paper this week. Darnit!

Well, more later .. . got to do some things. Have a great day everyone!

Radiation Update and an Unexpected Birthday Gift!

So, last Tuesday the 15th, my rad onc said that she wanted to do 5 booster radiation treatments. I decided to go along with it because of her explanation:

Apparently, the 28 treatments she gave me were at a low dose, meant to kill "microscopic" disease in the lymph channels. However, it wasn't big even to treat "visible" disease. So, she wanted to do 5 booster treatments at a higher dose to get at the visible disease (I had a rather largish area and about 10-12 smallish tumors in my skin).

I was to start the 5 booster treatments yesterday - but the area under my armpit has been burned - it's looking pretty raw. The top layer of skin has fallen away and the area is red, swollen, and somewhat painful. It hurts to lift my arm above my head and made it hard to play softball. So, the rad onc yesterday is giving me a week's reprieve! I don't have to start the boosters until next Monday! IN the meantime, I'm soaking the area 3x/day with a washcloth soaked in a water/baking soda/salt mixture and then slathering on Silvadine cream to help it heal. Whew! I think it's helping, although it's still painful. They offered to write me a script for pain meds, but I turned them down. Me and pain meds don't mix well. Rather be slightly uncomfortable with pain than throwing up.

YAY!

In the meantime, those last four little tumors that I felt a couple of weeks ago are gone. Yup. Hasta la vista, baby!

So, the radiation is doing what's it's supposed to be doing. I can handle a bit of discomfort. As long as it heals quickly!

Busy busy busy

Again, I've been off the internet the past few days and so I haven't blogged.

In general, I'm doing well emotionally. Friday was a busy day . . . I had a couple of appointments and coffee with a friend, then I decided to take Eddie to the Marion County Fair that afternoon (it was probably a bit too much and too hot, but he had fun), then I had dinner at my colleague, Nancy's house. She made curry chicken, salad, carrots, and rice. Very yummy!!

Saturday, I went up to Portland and hung out with Scott. We had coffee, then he got his hair cut, then lunch with his daughter, then they had an appointment, then dinner and watch a movie at his place. A relaxing day and it was hot out.

On Sunday, I had coffee with Scott, then came home, picked up Eddie, and we went to my former grad student's daughter's 2nd birthday party, then I had a softball game. Again, it was hot.

Today, I had acupuncture, a meeting with my undergrad research assistant Emily, radiation, and then lunch with another former grad student. It's hot again today - at least 90 and it was only forecast to get to 85. I will play volleyball this evening - I hope it cools down some!

Physically, the skin under my arm and under the breast area is really tender and when I take the dressings off, the tape tends to take a very thin layer of skin off with it, making it even more tender.

And, I have been struggling off and on the past two weeks from tummy problems. Not nausea, necessarily, but more a loss of appetite and when I do eat, I often feel bloated and uncomfortable until I can burp. My acupuncture treated it today . . . I think it made a bit of a difference after lunch today. I didn't feel as bloated. She did say to drink peppermint tea with a bit of ginger in it to help with digestion. Also, I need to avoid heavy foods (no red meats), dairy, shellfish, sugary foods and raw vegetables. So, today for lunch, I had chicken skewers and a salad. I think it made a difference.

I may not be blogging much over the next few days .. . my family and I had to Lincoln City for three nights and three days. We rented a 3-bedroom house with a hot tub on the deck (which I can't go in, but oh well), and a foos ball table and an ice hockey table. Looking forward to cooling down at the coast . . .

In the meantime, my dad and Gooey are building my mosaic platform. Now I need to get to designing it!! Will post pictures of the mosaic and their process of making it after it's completed!

Two More Mandalas

I visited the Mandala Lady (Maureen Frank at http://www.maiahcreations.com/index.php today and dropped off two mandalas that I colored. The first is the July Mandala of the Month. She stated that it looked like a pyramid, so I chose earthy colors for it. I mostly just played with colors and shading. It seemed kinda plain, so I added the curly cues that area around it.



And, the next one is for a sculpture that she and her husband are creating for the Da Vinci Days celebration, which will be held here on July 18-20. It's a fun festival, with music, art, and science (hence, the name, "Da Vinci Days"). This is the Stargazer Mandala.



They were fun to color . . . the blue and yellow mandala on the Stargazer was a sketch I made because I wanted to create a mandala for some friends of mine as a gift . . . not saying who just yet as it is a surprise, but I'll post a picture when it's finished!

I also bought two more coloring books. One for me and one for my friend, Paula. I chatted with Paula on the phone yesterday (she'd been away in Italy and London for several weeks) and she thought coloring mandalas together would be fun, so I bought one for her! Trouble is, I'm not sure which one I want, so I will show both to Paula and let her choose the one she'd like.

Three more radiation treatments! Thank goodness! My skin under my arm is getting really tender and sometimes painful. I also finished a review of a book proposal that's been hanging over my head for a couple of months. Yay! Now, I can get to revising and resubmitting an article - it was due June 1, but the editor is graciously allowing me to take my time. I'd like to get it done by next Tuesday. I've done some of it, but then some other pressing issues came up. It feels good, though, to cross things off my list!

A Reason to be Hopeful!

A few weeks ago, I found about 4 or 5 more small tumor nodules on the right (from my viewpoint) lower quadrant of the right breast. I knew I had maybe 8-10 nodules on the left side, from below to the upper quadrant. Today, I decided to feel around to see if I still had them all.

This morning, all I could feel was one small one on the right side and one larger one on the upper left quadrant. I was really happy - radiation is working and I'm seeing results!

However, after radiation, when I saw the doctor, I felt again and this time I felt two nodules on the right and two on the upper left quadrant. My enthusiasm is tempered a bit now, but I'm still really happy that all this daily radiation is doing the trick! Take that, nasty cancer cells!

24 treatments down and 4 more to go! Yay!! More reasons to celebrate!

21 Down, 7 To Go

I had radiation treatment #21 today. I only have 7 more to go! Yippee!

Fortunately, I will have a three-day break from treatments because of the holiday. I think my skin needs it. The area they are radiating is really dark and the skin (where I still have sensation) is starting to get really tender. Also, the tape that the wound care nurse gave me to use has actually pulled off little pieces of skin here and there. Great, huh? So, I am back to using paper tape.

Sorry! I've been out of touch . . .

I just realized that I haven't updated my blog in a few days. Sorry! I guess I've either been busy or too tired.

On Friday, I took my son and niece and nephew to see WALL E. It was a cute movie with a good message. Then, we went to dinner and I brought my niece and nephew home and then was too tired.

On Saturday, I took my son and Scott and his daughter out to lunch for Scott's birthday and then took a ride on a Willamette Jetboat from OMSI to Willamette Falls. It was about 100 out and being on an open boat on the river was just what the doctor ordered. We wore lots of sunscreen and then had fun when the jetboat operator purposefully splashed us. We saw a bald eagle's nest and an osprey nest, expensive houseboats and big mansions (near Lake Oswego), then went down and saw the old Willamette Locks and Willamette Falls. All in all a great two hours on the river!

Sunday, it was much too hot to much of anything. I played softball Sunday afternoon. My brother-in-law finished doing his part on Eddie's Big Wheel. Now my task is to paint it and put the numbers on it, too.

Today, I had radiation treatment #18 - only 10 more to go!! Yay! Still dealing with the open wound (spent about $50 in one week for dressings and banndages!). The wound care nurse gave me a durable medical equipment catalog and I was able to order everything I needed directly from them and they will bill my insurance. Can you imagine? Otherwise, I might have a $200 bill for bandages and dressings that I just throw away. Criminy.

Other than that, I'm doing well - having fun - I think I finally shook that bad mood. My son's enjoying his summer break. I've more or less gave up on work for the month of June. I do have a couple of things that I want to get to this week, but I think I may take most of July off as well. I need to write a couple of articles and do some background research for a new project and write a couple of reviews.

Hope you all are doing well out there!

Radiation Treatment #16

Today, I had radiation treatment #16 - only 12 more to go! Yippee!! But my doctor is pretty sure she wants to do booster treatments, depending on how well my skin and the wound are holding up. But I will worry about those in a couple of weeks.

But as I waited for my dressing room to open up, I chatted with a couple of ladies in the waiting room. One is having a fun relaxing time coloring mandalas and we chatted about the one she was working on. The other woman was diagnosed with liver cancer last August and it has spread to her brain - she said she had lots of little tumors there. She only found out two weeks ago and is having whole brain radiation. I told her that I was sorry to hear that news and also that I know she must still be adjusting to the news. I tried joking around some, too. As she left, she said, "Why are you always smiling so much?" or "How come you smile so much?" I looked at her with a smile and the only thing I could think of to say was, "I work at it." It's part of my theory (based upon reading bunches of books) that cancer can't survive in a happy body.

Home Again

I arrived home last night - mom and dad picked me up at the Portland airport - the plane was about a half hour late. But we landed into some beautiful sunshine and blue skies. I was really tired last night and after doing the bare minimum, I was able to get to bed and get a good night's sleep.

I had radiation treatment # 13 today and went into my office for just a few minutes. I've sent the afternoon putzing around the house - watering the lawns, the flower meadow that we seeded 10 days ago. Eddie decided to take a mud bath - then I had to give him a real bath because he was sooo dirty! He had fun, so I figure it was all worth it! Dad worked in the yard - started trimming this hedge to the right of my garage and then swept up all the needles on the driveway from said hedge. He also helped me get my air conditioner installed in the living room window - it was located next to my pretty yellow rose bush and I believe that bush nicked both of us. So, it was a good productive day. Volleyball tonight . . . have a good evening!

I really need a life!! LOL

Okay, I really wanted to know how to figure the progress of the radiation treatments - both how many cells it killed each treatment and then how many cells divided overnight. I developed a spreadsheet with the results. I have saved the spreadsheet. I think I have the math right. It seems right, anyway. But the whole process involved some research.

I had to know how many were killed each time. My rad onc said that each radiation treatment kills about half the cells. Easy enough.

But I really didn't know the rate at which cells divided (otherwise known as mitosis - I think, so don't quote me on that).

So, I looked up the mitotic score of my "tumor" (cancer tendrils) and it was 1/3, or slow growing. Cool. They originally told me medium growing.

So, then I had to find out how often a tumor doubled in size. The average rate is 4 months - a tumor will normally double in size every four months. So, if I had a tendril that was 1 cm long, four months later, it was 2 cm long. I used the average rate, rather than the slow growing rate.

Okay. Say I have 100 million cancer cells in the area being radiated. If nothing is done, it will double to 200 million in four months. Divide 100 million by 120 days to get the daily rate of cell division (the number of days in four months) and you get 833,333, which I rounded up to 1 million. So, in one day, 1 million of the 100 million have divided, or a 1% rate. (I'd been using 20%.)

I developed a spreadsheet, showing treatment days and then no treatment days. No treatment days are week-ends, and I also have no treatment days next week, when I will be away in DC/Raleigh. There is also a no treatment day on July 4. I got it all scheduled and calculated. Treatment 28 will be on July 15.

You want to know what's weird about that? My sister and I rented a house in Lincoln City for July 15-18. We originally requested July 14, but the property owners asked to either add a day or take away a day so that they could have a two-night stay for someone else. We took away a day. How weird is that? It is almost like it was meant to be. So, those days in Lincoln City will really be a celebration of me finishing radiation treatments! (At least the first 28. My rad onc will have to wait until I return for those boosters she wants to do.)

I won't go into the details of the calculations, but I believe it is accurate since I didn't calculate the dying of cancer cells on no treatment days, only growth.

And, the other weird thing, after 28 days, I only have half a cell left, according to the spreadsheet.

So, there IS a reason behind the magic 28 day mark for radiation treatments. At least, using the round number of 100 million cells to start.

According to my spreadsheet, after my treatment today, there are only about 427,000 cancer cells left. With an original start of 100 million. Take that, you little buggers!

That feels good to have so many of them gone. Tomorrow morning, when I go in for the treatment, it will be 432,000.

I will keep you posted - not everyday, of course - but now that I've started this countdown of cancer cells, I can't stop. This way, we'll all have something to hang onto as I complete these radiation treatments. Eyes on the prize, right?

Eight down, 20+ to go

Again, I really don't know how many cancer cells there are. But I've decided to start with the nice figure of 100 million. (Well, maybe not really nice, but realistic.)

I started Monday with perhaps 10 million cells. I've had three treatments, so after treatment on Monday, it was down to 5 million. It went up to 6 million overnight, then Tuesday's treatment cut out another 3 million. This morning it was up to 3.6 million. Today's treatment got it down to 1.8 million. Tomorrow, I start with about 2.16 million. Thursday's treatment brings it down to 1.1 million. Friday morning, I will start with 1.32 million, and Friday's treatment will bring it down to 660,000.

I think I will work on a chart that will calculate this through all of the treatments. It will help me remember to be thankful for these treatments instead of seeing them as a drag. It helps keep my eye on the prize, right?

Slow Burn - Another Note about the Mandala, Part 2

Yesterday, I showed "Slow Burn" to my counselor and she pointed out something that was obvious but yet the conscious thought never entered my head.

"Slow Burn" looks like the sun. The sun "radiates" heat and light. Hmm. Interesting that that came up while coloring about how I was feeling - and having to do daily radiation treatments.

Also, "slow burn" refers to this low-lying anger I feel, but it could also refer to 1) the slow burn that the cancer cells are receiving from the radiation; 2) the slow burn that my skin is getting from the radiation; and 3) the burning sun (well, it is burning pretty quickly, I suppose, but because it will burn for millions of years - it's "slow" in human time. Does that make sense?

And, finally, the sun's radiation is life. These radiation treatments mean life.

Too Many Flippin' Appointments

You wanna know what was in my appointment book this week?

Monday
11am radiation
6pm Department Awards Dinner

Tuesday
8:20am radiation
9am counseling
12pm hair cut
1-3pm Eddie's class end-of-school party

Wednesday
8:20am radiation
10am coffee with a colleague
12:15pm transport Eddie and classmate to school swimming party
1pm Zoladex injetion
1:30pm reserve rototiller for dad's use in my yard
2-3pm Eddie's school's swimming party

Thursday
10am meet with grad student working on King Island picture gallery
10:45am radiation
11:30am pick up Eddie for last day of school

Friday
9:30am pick up rototiller
10:30am acupuncture
12:30pm return rototiller
1:20pm radiation

Last week was:
Monday
11am dentist appointment
3:40pm radiation

Tuesday
9am counseling
11am doctor's appointment
1:40pm radiation
2:30pm wound care appointment

Wednesday
8:30am acupuncture
10:10am radiation

Thursday
11am radiation
12pm lunch with friends

Friday
10am radiation

Next week:
Monday
radiation

Tuesday
9am counseling
pick up Eddie's report card
1pm doctor's appointment

Wednesday
fly to DC

Thurs/Fri
meetings at NSF

Fri pm - fly to Raleigh to visit friend
Sunday - fly home

And remember that there are also the daily things like transporting Eddie back and forth to school, playing softball or volleyball, and other running errands.

And people wonder why I'm getting tired. There's just too many flippin' appointments and not enough time to actually work lately.