Radiation routine

Four days into this and it's already starting to feel routine.
I pack up and tear myself away from my desk just shy of 1/2 hour before my appointment. Climb in my car and drive from the south end of Maplewood to the north end up White Bear Avenue.
Score a good parking spot in the permit parking section close to the clinic door. Walk in, greet the receptionist, find a seat in the waiting room.
Within minutes, the technician fetches me and I shut myself up in a dressing room. Strip to the waist, wipe off any remnants of deodorant from under my left arm, slip on a gown on, open to the back, followed by a robe.
Walk a few steps to the treatment room. Remove the robe, lay down on the treatment table, take my arms out of the gown and wrap my hands around the plastic bars that are just behind my head, resting my arms on wing boards.
The technician puts a blue wedge under my knees and places my feet in a foam block. She checks and adjusts the position of my arms and chin, then starts positioning the radiation 'camera'. Key to this is lining up the red cross-hatch projected by the camera with the purple plus signs in the middle of my sternum and on each side of my rib cage.
Measure, gently prod, gently nudge, measure, check the sheet, double check. We chat a little but not much. I figure she's got a lot on her mind.
When everything is set, the treatments proceed with more shifting and positioning and measuring and double checking in between. My nose usually starts itching about halfway through, but I can't scratch it.
Lying on the table isn't hard work but I am always glad when it's over and I can bring my arms back down, scratch my nose and lift my head off the hard plastic form it's been cradled in.
Off the table, put the robe back on, say 'see you tomorrow' to the technician, head for the changing room where I slather lotion all over the treated area, discard the gowns, put my clothes back on and head out the door, bidding farewell to the receptionist. Climb in my car and head east to home and family.

1 down, 32 to go

I now have one radiation treatment under my belt. They say the first one is the hardest. I was on my back on a table with my arms over my head for over an hour while the oncologist, technician and physicist lined up all the devices and took pictures. Because my left breast is being treated, extra precautions are required to protect the heart from radiation and the radiation is 'applied' from 3 angles rather than the usual two.
It was no picnic and I was so thankful when it was over but there was no pain except for the cramping in my shoulders which went away as soon as I could move again.
Dr. Kim said that she would explain more about the procedure in one of our upcoming appointments, which is good because I have a lot of questions and want to learn more.
If you're curious like me and want to find out more right now, there's some good info here: http://www.breastcancer.org/tre_rad_idx.html
I should be in and out of the treatment room today in less than 20 minutes.

Finding peace after disgruntlement

I have seen the hand of God working throughout my breast cancer experience, from my inexplicable decision to schedule a mammogram after avoiding them for four years, to the radiologist knowing the lumps were to be taken seriously, to the fine surgery performed by Dr. Kim and the care I received at the hospital and ongoing in the love and support of so many people, near and far. I also see His hand in my decision to leave the clinic last Tuesday, though that requires a bit more explanation.

I wasn’t ready to begin treatments that day. I was still questioning, still hanging on to the last shreds of resistance and denial. Physically and emotionally I was very low. Additionally, I had always had in my mind that I didn’t want to decide on anything before seeing my GP at the Baldwin Clinic but I wasn’t scheduled to see her until Wednesday, which meant I wasn’t prepared mentally, either.

I am thankful God works through us and leads us even at times when we are not being saintly. I am convinced that by walking out of the clinic, I was following God’s leading, though at the time I was too disgruntled to recognize it.

But it all made sense the next day when I found the peace I had been looking for after talking to Dr. Nash. It was such a relief to review the options with a professional who had no personal stake in what kind of treatment I pursued and to get objective and compassionate answers to some nagging questions.

I now see that it would have been a mistake to stay that day and it would be a mistake not to go back. So, I am going back. But this time, I am ready.

Reverse chronology (updated)

10 May 2007
Last radiation treatment (#33).
26 Mar 2007
First radiation treatment scheduled for noon.
21 Mar 2007
Consult with GP - Dr. Nash at Baldwin Clinic. We had a frank discussion of all the options and possibilities and I left convinced that going ahead with radiation was the right choice for me.
20 Mar 2007
Unsuccessful attempt at first radiation treatment.
16 Mar 2007
Second visit to Healtheast Cancer Care. Pre-radiation teaching (mainly about proper care of skin), CT Sim so Dr. J. Kim and the radiation physicist can design the treatment.
12 Mar 2007
Initial appointments at Healtheast Cancer Care, St, John's
2 Mar 2007
Appointment with Dr. Bergman
27 Feb 2007
2nd follow up with Dr. A. Kim; surgical drain removed
26 Feb 2007
Discussed the pathology report with Dr. Nash
23 Feb 2007
Dr. A. Kim called with the cancer diagnosis
22 Feb 2007
1st post-surgery follow up with Dr. A. Kim
20 Feb 2007
lumpectomy
29 Jan 2007
initial meeting with Dr. A. Kim
12 Jan 2007
diagnostic mammogram and left breast ultrasound
3 Jan 2007
check up with Dr. Nash; mammogram scheduled

I walked out

Long story short: I didn't have my initial radiation treatment today. We walked out of the office at 4:30. We had sat in the waiting area for 1/2 hour. I checked with the receptionist at 20 after and she said she would ask someone to come out and speak to me. I gave it another 10 minutes and then left, explaining to the receptionist that I couldn't wait any longer.
I walked out, but I haven't turned my back on that clinic or on radiation treatment. But I was feeling the pressure of time all day and having to wait with no explanation and seeing all the other patients waiting too (no one was called out of the waiting room the whole time we were there) and knowing how behind I was at home pushed me to the end of my patience.
Not that I was rude or anything. I just quietly explained why I was leaving, then left.
Sigh. I'm going to think this over and pray for guidance.

An afternoon at HealthEast Cancer Care, St. John's Hospital

I was ready to like St. John's because of the high praise it had received from someone whom I respect a great deal. And it lived up to my expectations from the initial phone calls, to the moment we walked into Cancer Care and were greeted by the receptionist and throughout our appointments yesterday. The atmosphere there is professional, caring and thoughtful but not grim.
We met first with an RN from the Breast Center who recorded my (up to this point) very boring health history and gave an overview of radiation treatments and answered a number of questions. Tanya, the radiation oncology RN, took my vitals. Next, we talked for close to an hour with Dr. June Kim, the radiation oncologist. She is clearly very dedicated to her work. She drew several pictures for us: a cross section of the breast, two different views of a milk duct with DCIS, a representation of the tissue that would have been sent to the pathology lab along with an explanation of how the lab would prepare and analyze the sample. She explained the radiation procedure in the same level of detail and answered more questions. (Yes, I have an endless supply of questions).
Our final appointment was with Dr. Cheema, the medical oncologist. He's intelligent and funny and a Packers fan. He was very eloquent about the benefits of tamoxifen. I think my acknowledged reluctance may have brought out the best in him. He answered his share of questions as well. Before leaving, we checked in with Tanya again and she gave us a quick review of the information folder she had prepared.
As I said in last night's post, our visit had the 'just right' feeling I was looking for and our time there not only added to our growing knowledge of what this is all about but boosted our confidence.

You better shop around

This has been my mantra while seeking out treatment, and, like Goldilocks, I found a clinic that feels 'just right' on the third try.
For now, I will hit the main points and write in more detail tomorrow:

• I am not a candidate for Mammosite, for several reasons, the main one being that it is not indicated for women with DCIS.
• I would be scheduled for 33 radiation treatments, 28 for the breast as a whole and 5 concentrating on the site of the tumors. I could start the treatments as soon as next week and I'm scheduled to return to the clinic for a 30 minute teaching session on Friday afternoon.
  
• The most common short term side effect of radiation of the breast is fatigue, though there is a long list of others: skin irritation, sensitivity, itching and dryness; breast swelling and soreness; slight congestion in the lungs with a dry cough; swelling of the arm.
• Long term side effects include increased brittleness of ribs beneath the treated breast.
• For women with DCIS, the rate of recurrence of any kind of breast cancer (invasive or non invasive) is 30% if the cancer is treated with a lumpectomy alone. When treated with a lumpectomy followed by radiation, the rate drops to 10%.

Uneventful - sort of

It's been pretty quiet on the breast cancer front over the past couple days. I continue to heal from the surgery, though my breast is still tender and there's a strange weightiness to it. But everyday it gets better.
There was a brief flurry of phone calls on Friday. The new clinic couldn't locate the pre-surgery films and I hadn't any idea where they ended up - the surgeon's? The first breast clinic I went to? The other cancer center? Turns out they were back at the Baldwin clinic and Dan retrieved them for me.
On Wednesday, Dr. Bergman called to ask why I had cancelled the appointment with the radiation oncologist. I explained that I was seeking care at another cancer center. I hope I wasn't too harsh but I let him know that I didn't find the staff and atmosphere at his clinic to be congenial. His response was very polite and professional.
It's been a little more interesting on the day-to-day living side, . Wednesday night, Dan and I saw the Chieftains at Orchestra Hall. We're not dyed in the wool Irish music fans, but when I made the plans a couple months back, I figured it would be a fun mid week break and I knew the music would be good.
And it was. Appearing along with the Chieftains, were a number of younger musicians: a heavenly harpist (name may be filled in later if I locate the program) and an awesome young fiddler from Canada, who, with his brother and a female dancer from Long Island (more names to be filled in later), raised a lot of dust with their 'Ottawa Valley' style of step dancing. It was a loose-limbed, happy kind of dancing that was really fun to watch. We especially liked the number where all 3 of them sat in chairs and danced very vigourously while seated, the one guy fiddling as well as dancing through most of it.
An all-girl but otherwise very traditional Irish band called Liaden joined in the playing and dancing and on a couple of the tunes 7 young dancers from the Shramrock School of Irish Dance in Minneapolis stepped it up too. On the encore number (I've never been at a show at Orchestra Hall when there wasn't an encore), the whole bunch joined in a line dance from Breton and then snaked their way through the Hall, picking up audience members along the way.
Last night, we spent the evening a trifle less enjoyably. The boys and I were running around in the Cities shopping and were heading to the car around 5: 30 after an unsuccessful stop at a shoe store, when we saw that the left rear tire was flat as a pancake. So we called our hero, Dan, and he came and rescued us. Mose and I got the spare out and did some other prep but jacking a car up makes me very nervous so I left that delicate operation for Dan. The trip home was a little slow but the spare held up all right and I should be able to get in on Monday morning to have the tire repaired and be on my way again.

Brief intro to MammoSite

The radiation oncologist I'm meeting with on Monday is the only physician on the east side of the Twin Cities to offer MammoSite Radiation Therapy. The thing that sets MammoSite apart from other radiation treatments is that it can be delivered in a much shorter timeframe. The typical schedule for radiation treatments is one per day, 5 days a week for 5 , 6 or 7 weeks. MammoSite treatments are scheduled two per day for 5 or fewer days. That sounds really appealing. It's also a more targeted method of delivery so the patient is exposed to less radiation.

To learn more, go here: http://www.mammosite.com

A normal day

Yesterday was my first normal day since the surgery on February 20. I rode the van back and forth to work. Put in a full 8 hours. Had no medical appointments. There were no snowstorms to deal with and no training to attend. It felt great to get back into the comfortable routine.
I'm playing phone tag with the 'patient navigator' at a cancer clinic that has been highly recommended to me. I hope to connect with her today.
Yesterday evening, I spoke with a friend from Baldwin who was diagnosed with breast cancer last year. It was encouraging to hear how well she is doing. After being told initially that she should have a double mastectomy, she sought out several second opinions and followed a course of radiation treatments instead.
I thought it was just me being crabby, but her same assessment of the clinic I visited last Friday was the same as mine: it's not a well run, cohesive place. I'm thankful I have other options.
She had reservations about hormone treatments but was taking them as prescribed until she began experiencing excruciating joint pain - a known side effect. She stopped taking the medication but the pain didn't subside completely for 8 weeks. She said she never felt like herself while on the hormone.
It would be a mistake for me to jump to any kind of conclusion based on this - especially since she wasn't on tamoxifen but on a similar drug that is prescribed to post-menopausal women. But hearing her story confirmed my caution about hormone treatments.

I'm not in a hurry

When I first starting talking about my diagnosis, I told a couple people that I wanted to get the treatment show on the road. This was more about being ready for whatever was next but perhaps sounded like I was in a hurry.
I'm finding that I'm not in a hurry. It's likely that I won't make any decisions for another couple weeks. There are some options I still want to check into, such as a targeted radiation treatment called MammoSite that's available at 4 clinics in the Twin Cities. I will do more research into the side effects and benefits of Tamoxifen to see if that's right for me. I want to talk to my friend Linda about using acupuncture to aid in healing and enhancing the health of my breast as I go through treatments.

What we heard from Dr. Bergman...

...was the 'by the book' treatment path for moderate grade DCIS - lumpectomy followed by radiation followed by 5 years of tamoxifen. He took a lot of time to explain and clarified some things for us. We walked through the decision tree published for lay people by the National Comprehensive Cancer Network. He said he used the professional version of this same guide.

Though I appreciated the time he spent with us and the understanding I gained about my particular cancer, I didn't find the appointment that satisfactory. It could be because I didn't hear what I wanted to: namely, that not having radiation treatments is a reasonable alternative. But I think it had more to do with the loud and clear assumption that I would just hop on the treatment train, no questions asked.

My next appointment is next Friday with the radiation oncologist (Dr. Bergman is a medical oconologist) and I'm scheduled to consult with Dr. Nash on the 14th. Until then, I'll be reading and considering and praying. And, blogging too.