hmmmm… you could say I’m a bad blogger… and you’d be correct!

It’s been many months since my last update. Bad Becky.

Things are going well. Healing is continuing – at a pace MUCH too slow for me!!!! >: \ Still have some swelling and pain in my breast – although the ‘burned’ look is gone. I do have nearly full range of motion back in my left arm.

Steve and I went to Japan for 10 days in March for training at the home dojo – that was AMAZING! We’d been putting it off for several years – no money – but after this last year of cancer treatment, we figured we should go before it was too late – we’ll just have to pay it off over time. Hopefully the economy ‘turn around’ will get to our business this year.

Becky

Yes, done.

My last radiation treatment was on Wednesday.

I’ve been … remiss… in posting. It was a busy summer. I worked full time (50 hours a week) over the summer, and was, frankly too tired to post on a regular basis.

Summer programs are over now. The Roleplay Workshop goes into hiatus for the month of September – a little summer wrap up, a little vacation, and then school year prep and school year programs begin in October.

I have time to write - So! the full update.

Radiation Treatment:

Very interesting – in a scientific way. Actually won’t go into the details – not quite as brain fun for me as the chemo. The actual treatment was very quick, 5 minutes – big machine moving around, sci-fi noises, a tingling in my breast – that was it (not counting the awkward and uncomfortable position I needed to be PERFECTLY still in).

For part of the treatment, we used a ‘high tech’ methodology, as my tumor was in my left breast – in fact RIGHT over my heart. To protect my heart from the radiation, we synchronized my breathing with the radiation beams. Basically, by inhaling deeply into my chest (expanding my lungs), my breast and the tissue getting irradiated lifted farther away from my heart – enough so that the beam did not intersect my heart at all — how cool is THAT!?

Yup – I have a wonderful rectangular ‘tan’ on my left chest – darker than I’ve ever tanned before … and the first time I’ve ‘tanned’ my chest! (really) And yes, it did ‘burn’. Weirdest thing. It’s not like a sunburn… and yet it is. Imagine the worst sunburn you’ve ever had … and put it on your  armpit and the most sensitive parts of your breast… painful. Mostly irritating, the ‘jump around inside your own skin’ kind of irritating.

And I have some fatigue. Not much, certainly not as much as during the last four weeks of chemo.

And the crew at the Radiation Oncology Clinic were fantastic! A great group of really professional, warm and friendly people – everyone from the woman at the front desk to the nurses to the techs and my Doctor (V. Uhl). Awesome. Thank you!

Peripheral Neuropathy

Well. Still here. Still progressing. I hate being an ‘outlier‘. I’ve become acclimated to the side effects of the meds (as in they don’t happen any more), but, the meds have become less efffective. The tingling/pins & needles feeling has progressed farther up my hands from my fingertips. Muscle cramping, stiffness and weakness has increased and moved up my arms to my elbows; with similar but much less intense symptoms in my legs. The symptoms are most severe in my right arm, then left arm, then left leg and virtually no symptoms in my right leg (weird – eh?).

Acupuncture has had some small success. We’re hoping that as I have more time (no summer camp to run) and can schedule more frequent treatments, that it will have more effect.

I’m going to be trying some massage soon – hope that will help.

There has been some thought that maybe some of this is an ‘RSI‘ type thing. Working on a laptop does create problems with having good posture for working… and I do a LOT of typing on the computer – especially when woking on a manual edit (which I was doing before the summer program started, and plan to begin again after my vacation). I’ll be paying extra special attention to this (right now, in fact).

What’s Next?

Well, because 2% of my tumor was estrogen responsive, I’ll be taking Tamoxifen for the next five years (!!!). Not sure how I feel about this. It doesn’t have any huge negative effects – although I hate taking pills.

Keep on trying to figure out and fix the neuropathy.

Get back into training – I’ve really missed it! I’m afraid I’ve ‘fallen behind’ and lost my skills. I’m afraid that my enthusiasm or the ‘enthusiasm’ of my training partners will result in my getting injured because I’ve done too much too soon. But I need to get back into it.

Keep up my Qi Gong practice. It’s helped a lot, and I’m learning wonderful things that help my body, my other martial arts practice, and my mind and spirit. It’s a fantastic community! Very different, in some ways, from my bujinkan family – but equally valuable I think.

And the cancer battle? … … well, they say it’s not really finished until you’ve been cancer free for seven years…

I say: life is both a battle and a joy to live… bring it on!

Hi everyone!

Yes, surgery is done (yesterday). I have 2 scars – one from the removal of the tumor and tissue margin, and one from removing 4 lymph nodes, all of which were NEGATIVE for cancer – a very good thing!

I did have to get a ‘breathing treatment’ in the recovery room… don’t remember it, but it wasn’t serious. Between the left over junk in my lungs from the flu last week, and irritation from the trach tube, and my asthma, they had to suck some junk out my lungs. Lots of coughing yesterday – but done today.

I spent yesterday afternoon resting with ice packs on my incision sites. I took 1/2 doses of Tylenol-codeine every four hours throughout the day and night… the pain wasn’t bad – just enough to be uncomfortable. I stopped taking all pain meds this morning – there is no pain – only a bit of discomfort.

I had no trouble eating, and have good appetite!

Slept ok last night… most comfortable on my back… but I really don’t sleep well on my back – so was in bed for 12 hours… maybe got 7 hours of sleep. Plan on getting a nap in today.

What’s next?

I meet with my radiation oncologist next Wednesday to plan out my radiation treatment. I will get 4 to 6 weeks of daily radiation. (hmmm… super hero changes in my future?).

I also meet with my medical oncologist (chemotherapy) on Wednesday to determine if I need more chemotherapy. Hopefully the answer will be no – I really want to get this portacath removed so that I can start training again!

THEN, I meet with my main doctor & surgeon on Thursday to check in about the results of the tests on the tumor and look at the progress on my healing from the surgery.

I’ve got work tomorrow after school and evening, and also on Saturday day and evening — I’m very confident that I’ll be able to work.

I plan on attending Trevor’s class Monday and Wednesday of next week, Qi Gong AND Dale’s class on Tuesday, and Dale’s class on Thursday — and yes — I’ll be watching! not training!

Things are challenging right now… this cancer treatment thing is really interferring with my ability to get things done for my summer program… I’ve got billing to do, registration confirmations to do and a manual edit to complete… sigh… I need another 6 weeks of time and I’ve only got two…  grrrr… really wish I could turn some of this over to someone else!

Back to resting…

Kickin’ Cancer’s Ass!

… yes, really! (more to come – keep reading!)

Quick insert here: just spent the last 4 days at KublaCon – a wonderful gaming convention and a super group of people who are like family. I had a great time as usual running the young player’s room. Although my crew was VERY diligent about making sure I didn’t over exert myself! My Kubla Family raised over $2000 for my treatment! Wow!

Once again, I’m overcome by this support. Thank you all! Words cannot express how I feel. And the hugs and outpouring of love and support was even more wonderful.

RADIOACTIVE!

Today, I got radio-isotopes injected into my breast! Now I have super woman ninja powers! (I wish) I hear you asking: why!?

Well, tomorrow (6/1/2011) is my surgery – you may remember the date from my last post. It will be a ‘partial massectomy’. Although, I have to say that I’m a little skeptical about the ‘partial’ part - after my ‘biopsy’ in December where they removed about 1/3 of my breast and did reconstruction after taking out a mass smaller than my little fingertip! that proved to be NON-cancerous, leaving a 5 inch scar… . The scars don’t bother me… just the ‘bigger surgery than expected’ part.

After they remove the tumor and some surrounding tissue, they’ll take a look at my lymph nodes. This is to see if the cancer has spread to them (a very bad thing). Unfortunately, lymph nodes are difficult to find – thus the radio-isotopes! They’ll use a Geigercounter to track the radio-isotope – which my wonderful immune system will be cleaning out of my body, using the lymph system.

They will remove and examine the first lymph node to see if the cancer has spread to it. If it has, they’ll check the next one… and so on. Hopefully (fingers crossed real hard) the first lymph node will be clear. The more they have to remove, the more problems I might have.

For the surgery, I’m hoping that they will find what Dr. Greif called ‘swiss cheese’. This is when the tumor looks unchanged in ultrasound and MRI, but is actually riddled with holes from the chemotherapy.

If not, there is a chance that I will need to undergo more chemotherapy… grrrr… thus my portacath is still in my chest and jugular vein. This means that I still can’t train fully! double grrrrr… Although, I’m going to have to watch myself … after my last post, I dove right back into training, went to 4 classes in 4 days for a total of about 6 hours of training … and got the flu. It’s pretty much cleared up now, just in time for surgery.

I will be seeing my medical oncologist the week after surgery to see if I need more chemo. I’ll also have my first visit with my radiation oncologist to go over scheduling my radiation therapy (sigh), and a visit with my surgeon to go over the results of the surgery and check on my healing progress.

Whew! Getting a bit… tired… of all this. REALLY hoping that everything can continue as originally planned (surgery, followed by 6 weeks of radiation, and then done).

Still fightin!

So… it’s been a strange two weeks.

First, the last chemo was a bit rough… as to be expected – chemo is poison, after all! I had lots of nausea and fatigue. I ended up taking a 2-3 hour nap, every day, Monday through Thursday.

I used my alternate medication, which kept the nausea down to a manageable level. By manageable, I mean that I still felt nauseous, but only threw up a couple of times. My stomach was producing so much bile and acid, that the first meal of the day was always a challenge.

I solved it in my usual practical way: I either drank a cup of water or some Kefer, knowing that I would throw up all that bile and acid. THEN I put food in quickly, before more acid and bile could fill up my stomach. After that, the rest of the day was pretty easy – keeping at least a little food in my stomach at all times.

It was challenging to find food that my nose and stomach agreed would stay. Egg and rice, chicken broth, other mild things.

I went to Qi Gong class on Tuesday night… I had to sit a couple of times and had lots of ‘hot flushes’. Every couple of hours for several days, my pulse and blood pressure would surge and I would ‘flush’… breaking a sweat and feeling hot. Nearly passed out in Qi Gong when I began to feel really nauseous and Dr. Feng worked some stomach meridian points on my wrists. Sat a moment and got it back together.

My parents came to visit 2 days after chemo and stayed for a week. It was a great visit – although I needed to rest a lot and couldn’t enjoy some of the great restaurants we visited. My favorite part was on Monday (5/2) when we drove out to Point Reyes. We had a fantastic lunch at the Cafe at Drakes Beach! The food and the scenery were amazing. If you get a chance – go!

My dad is a great fan of Ragtime music. Fortunately, we live in the Bay Area – where you can find anything! A little google searching, and we found a place with Ragtime every Tuesday – and with fortune’s good graces – a world famous pianist  was playing! Dad had a great time (he was like a little kid!), and the food was fantastic!

Had my MRI and follow up meeting with Dr. Greif later in the week. As usual for me, I plowed through the meeting focusing on then next steps – scheduling surgery and all that goes with it.

The meeting was, however, disappointing. Nay – shall I say – frustrating and confusing. I have to admit this is the first time my unwavering fearlessness has been shaken. And in it’s wake: anger.

Why?

The MRI showed that the tumor was unchanged after 19 weeks of chemo. While this is medically viewed as a positive result… I am frustrated on many levels. First, most importantly, I’m confused. I was under the impression that the tumor was shrinking and showing a lot of changes under the chemo regime. I don’t know if I misinterpreted the results of the ultrasounds, or if there was a miscommunication, or if I exaggerated the results in my head, or if (here’s a crazy one), the MRI person accidentally send the old images instead of the new ones (because, frankly, the old and new MRI images looked exactly the same…).

I sent my questions to Dr. Greif, who obligingly sent me the latest copy of my file. It has all the images (X Ray, Ultrasound and MRI). Sure enough, the ultrasound showed some reduction in size. Although, I have to be honest with myself, the shrinkage was not as great as I reported. (a bit of wishful thinking on my part).

Additionally, Dr. Greif noted changes in palpability of the tumor in my file. I, also, have checked the tumor regularly, and felt it getting smaller and harder to find. This last few days, it has seemed to firm up again… grrrrrrr. Maybe my tumor is as tough as I am, it certainly seems to be as stubborn.

It’s a struggle to view this as a positive result. I know intellectually that the main purpose of the chemo was to clear up any ‘loose’ fragments of the cancer, and that no growth is a positive result. But, emotionally, it feels like wasted time and hardship. Yes, I handled the chemo very well compared to some others… but it still sucked. Mostly for it’s negative impact on my daily activities.

Sigh.

What’s next you ask? Well, I’ve got a flurry of things coming up. I’d like to have the surgery sooner rather than later. We’ve got a date scheduled, although I’d like to move it up a couple of weeks – working on that.

Right now, the schedule is as follows.

• May 11, ECHO cardiogram of my heart to make sure it didn’t get damaged by the chemo.
• May 16, blood work and followup with Dr. Kuan (chemo doctor).
• May 25, presurgery at the hospital. This will be more blood work and another cardiogram thing.
• May 31st, visit to hospital to get a radio-isotope injected into my breast, so they can find, isolate and remove one or more of my left arm lymph nodes to make sure that the cancer did not spread to the lymph system.
• June 1st, surgery.

I’ve got a convention in the middle of all of that, KublaCon – the 27th through the 30th. I’m in charge of running the young players room there. It’s another of my core communities. I’m looking forward to seeing everyone again.

So. I find myself filled with anger at my tumor. Visualizing my body ripping it to pieces. I went to training at Trevor’s class last night. Got in a solid hour and a half of non-stop training. And I’m going to continue with that. Qi Gong and Dale’s class tonight, Trevor’s outdoor training on Wednesday and Dale’s again on Thursday. Driven by anger. Fuck this ‘sitting out’ crap. I’m going to do everything physical I can. I want to be stronger for the surgery. I want my body to kill the tumor. I’m tired of sitting around letting the cancer dictate my schedule and activity level. I’m tired of coddling myself.

Yes, yes, yes, I’ll pay attention and I won’t do the things that might jeopardize the catheter in my jugular vein – no rolling, no falling, no getting hit hard.

…

This may be round three – but this battle is not over yet! I intend to kick this cancer’s ass to hell and back!

Ready to Kick Ass!