More on the radiation train

Well, yet more news on the ongoing cancer battle!

I have finished radiation on my leg and spine! Thank God! I believe the spine radiation was causing all the nausea (my radiation oncologist disagrees) but if it’s easier tomorrow, well then we’ll know.

But wait! If we’ve finished leg and spine treatments, we should be done. Yes, we should. But unfortunately we are not.

The biopsy on my chest did indicate the presence of cancer. The rash is UGLY!!!! And it as even had the audacity to cross the scar lines that mark my “new” reconstructed girls and the remaining chest tissue. And it hurts. Doc Romer has ordered more tests on the tissue to see if it is the same type as the first cancer, and set me up for the first of my new set of chemo.

But on Mothers Day, as we gathered at Michelle’s for Marion’s pizza and strawberry shortcake (is there a better Mothers Day meal?), I complained that “my words weren’t working”. I can talk, but sometimes my words are slurred and it takes longer to get them out. My very helpful sister and BIL commented they often have that problem on Friday nights and inquired about my drinking habits! And we also thought it could be related to the pain meds I take.

We met with Romer and shared my speech concerns. He didn’t buy either increased alcohol consumption or pain meds. Scheduled for Brain MRI. The morning of the MRI I told Jeff I knew it was brain mets (metastases) because I couldn’t close my right eye while doing my makeup. We were right. There are several spots on my brain and on Friday the 13th I began a round of 10 whole brain radiation treatments. I expect to finish on Thursday, 5/26. We’ll get back to chemo soon after that.

To be honest, it has been a very difficult few weeks. I’m feeling better this weekend and hope that will last for my next 4 treatments. On Monday, I have a celebration at work recognizing my 25th anniversary. I hope my energy will last. We had the girls for a few hours today and didn’t know putt-putt could exhaust you!!!! But it was a good visit and we hope to spend more time with them this summer.

On a bright note, Cousin Vicki is here for a visit. We had a small birthday party yesterday for Charlie and I and we had a great time. I invited a few friends for homemade cake and ice cream. Mom upped the ante a bit and was going to pick up some chicken salad at Cub Foods. Well, Vicki took over and made veggie pizza, a fruited homemade chicken salad AND a cake from Ele that had 144 candles on it! Beck and Lise ignored instructions re: no presents. For Mom, they brought flowers in the shape of a birthday cake. For Charlie, a hat that says “32,872 days old but who’s counting”. And for me, a small gold glitter cowboy hat, a note that said “Courage is being scared to death, and saddling up anyway. John Wayne. “. And a pair of earrings with purple crystals and saddle charms. A great celebration of Charlie’s 90th birthday and my 54th. I am incredibly blessed with amazing friends and family.

More tests, more doctors…

Just a quick update to let you all know where we are…

I started my radiation treatment last Thursday, so I’ve had 5 treatments so far.    I’m doing ok with the treatments now, but it didn’t start out that way.    Within an hour of my first radiation treatment, I was nauseous and vomiting.    No food or even water for me that evening.   I told the radiation techs and the nurse but they all said they didn’t believe that radiation could have that much impact that quickly.    I agreed to take the Friday radiation and – surprise, surprise – same thing happened!   

Jeff and I called my radiation oncologist Friday night and asked for some kind of nausea drug.    She called something in that helped and by Friday night I was able to eat some of the jello Mom brought over ( it was the BEST JELLO EVER!).   By Saturday I could have lunch.  

We saw Doc Romer on Monday and told him how difficult the radiation had been    He reinforced how important it was that I continue and he came up with another anti-nausea drug, Anzemet.    I agreed to take the new drug and radiation on Monday.   Success!    So, armed with multiple  drugs, we’re back on the path for finishing radiation.   I will have 10 treatments to my left thigh (halfway done!) and 14 to my spine.   

In a bit of new news, on Friday I will be visiting my favorite breast surgeon for a biopsy of a rash that I’ve got on my chest.    Probably nothing.   Lets just go with that, shall we?  According to Doc Romer, if it IS something, it could be inflammatory breast cancer.    If so, I’ll be starting chemo pretty quickly.   If not, then I’ll be able to wait until after radiation if over before going back on chemo.   

So, more tests, more drugs, more doctors.     Good stuff has to be coming out of this, right?    Right!

On another sad note, one of my “new” Noble Circle Sisters, Lucky Penny, passed away this week.   She was young, way to young for this.    Our hearts go out to her fiance and her son.   

Namaste

Once again…

As I reported in my last post, I had a PET scan on 4/11 and and appointment with Doc Romer on 4/18. We all went to see him, Michelle, Mom, Jeff and I for an 11:50 appt. Somewhere around 1:00 we probably saw the doc. He asked how I was feeling, and I honestly told him that I had some pain in my left thigh, and occasionally my mid to lower back. But, as I told him, “you’ve got the results of the PET scan, why don’t YOU tell ME how I feel”. And so he did.

He started by saying that it wasn’t good. He wasn’t kidding. Remember that the way a PET scan works is that they do an IV injection of a radioactive glucose solution The places with “uptake” are the places with cancer cells. The cancer draws the sugar solution and the radioactive “stuff” shows up on the scans. He read through the results for all of us.

There is a small new lymph node in my left armpit and also in the front of my neck showing some uptake. There has been an increase in the uptake in both lobes of the liver. There is a large area of intense uptake in both adrenal glands (on the kidneys).

Then we get to those bones, those bones. Let’s just say that the scan shows “marked progression”, including my mid and lower spine, my pelvis, ribs, sternum, and both thighs and hips. In summary, this report really sucked.

We spent most of the day at Romer’s office, which is also the Dayton Area Cancer Center. We moved from Romer’s office to wait for another hour to see Dr Paesson, my radiation oncologist. She talked for a while about all the risks of radiation, knowing full well that regardless of the risks we were going to do radiation. Finally, I sent Mom and Sis to join my nieces for lunch and Jeff and I waited to do radiation planning. Ultimately we spent 5 hours there that day. This past Thursday I had an MRI and X-rays of my back and legs.

Today, Easter Sunday, I am celebrating this wonderful life with some of the people who bring me love, hope and joy. My incredible husband and I have “the girls”, and we will join Mom, Sis, DBIL, nieces, cousins and friends for a great dinner and companionship. Early this week I’m certain I will begin my 10 days of radiation treatments. On Monday, 5/2 we’ll see Doc Romer again and on Friday I will begin a new chemo cocktail of Carboplatin and Gemzar.

On another sad note, a dear friend of ours from the ballroom dance world, moved on to a world without cancer, chemo or pain. “Rodie” Rademacher will be sadly missed for his compassion, his dedication, his sense of humor and his beautiful Viennese Waltz. Our hearts go out to the many friends and family, but most of all his fabulous wife Pam. May God bless us everyone.

Namaste.

Tests, shots and doctors

Just a quick note to say that I have my Faslodex shot tomorrow (Tuesday), a PET scan next Monday, and a visit with Doc Romer (and another shot of Faslodex) on Monday, 4/18. By the 18th, though, we’ll also have the results from the PET scan. My last set of blood work showed my tumor markers back on the rise (@800) so it will be good to see what the PET shows is going on.

Namaste.

The Noble Circle, and other stuff

What a busy time we’ve had! Here’s the update on the easy stuff, and then I’ll tell you about my weekend at The Noble Circle retreat.

First off, Jeff and I had a great week in DC. We flew out on Monday and I had classes on Tuesday and Wednesday. Thursday was left open for studying, then on Friday I took the Foundation Exam and the Corporate Exam to become a Certified Information Privacy Professional. Jeff went off during the day to visit his customers in the DC area. In the evenings Jeff and I walked across the street from our hotel and chose from a block full of intimate little restaurants. French the first night (Petit Plats), Italian the next, a Lebanese Taverna, and then back to the Italian. Food was great at all of them and we really enjoyed ourselves. Oh, and the best news? I PASSED THE TEST!!!!

Since my last post told of our trip to Texas, I’d also like to report that Charlie is now well and back to walking the sea wall in Padre Island!

Jeff and I have had our two young girls staying with us. We picked them up last Monday and they will stay through next weekend. My job in the morning is to make sure they get breakfast, fix their hair, and get them out the door. Jeffrey drives them to school and I pick them up. We both help with homework, but I let Jeffrey help with math! So far it’s a workable schedule and the girls seem happy. We enjoy it as well… at least most of the time!

Last weekend I went to The Noble Circle retreat. The 3 day retreat is the first step for new members joining the group. They are a support group for women “thriving beyond cancer” and is not limited to those with breast cancer. There were 15 of us, new members. The retreat was held at a place called Hope Springs Institute, near Peebles, OH, south of Hillsboro. I drove down with Katie, a young woman I met in chemo that week. When we arrived, we were shown to our rooms – we were in separate rooms on the second floor of the “Farmhouse”, each sharing with two other women.

It’s been a long time since I’ve shared a bedroom with someone not my husband. But I was lucky to get my friend Lisa, and a new friend, Dallas. We did very well together and it was nice to lay in the dark and talk.

The focus of the retreat was learning about other ways to fight cancer, including practicing Qi Gong, learning about whole foods, enjoying the massage, reiki and reflexology treatments and participating in the sharing circles. It was all great, but the sharing circles were the most touching and inspiring. Margaret lead the sharing circles, and she set a goal of knowing everyone’s name. So, she assigned us each a moniker to help her learn. I was “Rockin’ Robyn”, we had “Angie Baby”, “Lucky Penny”, “Connie Francis”, “Co-REE-na”, “Joe Willie Namath”, “Dallas Texas” and several others. I’m pretty sure those women will forever carry these nicknames!

On Saturday night we gathered after dinner in the Studio for a drumming circle. It was great! The vibration and energy in the room was palpable and I enjoyed playing several different drums. We drummed and danced for at least an hour! Then several of us moved to the Spirit House where we had a fire and sang songs. But perhaps the most moving activity of all was the Healing Circle. Again, as we all participated, and voiced the words, the energy and vibration could be felt so strongly. It was very powerful.

On Sunday we met for a great breakfast then a final QiGong session. Katie and I got back on the road and headed for home about 2:00.

We’ve had two of our Thursday evening sessions since we came home. The meetings are great and even though it seems like a huge commitment to agree to 4 hour meetings once a week, the discussions are interesting and gratifying. Some are presentations about organic gardening or some other topic, and some are personal about issues that one or more of us are facing. To my dear Noble Circle sisters let me say again “do not deny us the honor of walking this path with you”. My dear, dear friend Barbra wrote that on a card to me and I’ve never forgotten it.

We delivered the girls back to their apartment tonight. We had a good two weeks and we will miss them. But I won’t miss doing hair at 7:30 in the morning!!!

I will be nagging my doctor tomorrow to get my PET scan scheduled. I haven’t had one since about last July. I’m done with chemo and now have Zometa 1x/month (for my bones) and Faslodex, which is a drug that works by blocking the action of estrogen on cancer cells and given to patients who have already been treated with other anti-estrogen drugs (like Tamoxifen). I get the Faslodex as an injection every 2 weeks for the first six weeks and then once a month. I don’t like injections. I’ll take chemo any day!

No pictures this week but I will share some video I shot last week of my cousin Jenni singing in the Dayton Icon karaoke contest. Here’s hoping she’ll kick butt once again tomorrow night!!!
“The Only One”

Closing quote from Mother Teresa: “I know God won’t give me more than I can handle. I just wish he didn’t trust me so much.”

We’ve graduated!

In an effort to update my site more often, I am moving it to a “WordPress” blog account.    I don’t understand much about it yet, but I think it will let me update from any computer and also from my iPhone or iPad.   And we all know that I ALWAYS have my iPhone with me.   My wonderful husband just bought me an iPad and so far I have barely put it down! So you can look forward (or not) to more frequent updates.   You can also post comments about my posts and pictures and outrageous stories.   Hopefully, some of my more creative friends can help me entertain you all.

If you look on the right side of this page, you’ll see a place where you can sign up to receive updates to this blog.   If you would like to be notified when I update the blog, please enter your email in that section.  I will be working to move all of the old site over into the archive section over the  next few weeks.   

Mom, Jeff and I just returned from our trip to the Texas coast to visit our friend Charlie.   We had a great visit, with a disappointing end.    We arrived on Sunday and visited for a while.   On Monday, we all went to Snoopy’s (Charlie’s favorite fish place) and sat outside by the water and soaked up the sun.   On Tuesday Charlie wasn’t feeling well and had a bit of a cough, so Jeff and I left him and Mom to take it easy.   Jeff and I enjoyed the weather and walked on the seawall.   Wednesday morning came and Charlie was feeling even worse.   He drove over to our condo, but I took over driving from him then and we went in search of an Urgent Care.   The one he knew of, when we arrived, had a sign on the door that said “Closed Wednesday”.   Bummer.   We went in search of another, but Charlie’s breathing just sounded really bad.   We passed a hospital and I told him I would apologize profusely, but I was making an executive decision and we went to the ER.   Turned out to be the right thing to do, as they found pneumonia in both lungs and fluid in his chest compressing his heart.   We stayed with him most of the day and got him settled in a room.   His daughter came on Thursday and the three of us headed home.   We’re all glad that we were there to make sure he got the care he needed and he is definitely on the mend now.   He’s a pretty special guy.   Grumpy old curmudgeon, but we like him that way!

We got home on Thursday and I had chemo on Friday.   This is likely to be my last month on this regimen of chemo.   We’ll learn more in a few weeks.   I’m hoping that I’ll only have to go in for infusions 1-2 times a month instead of the 3 weeks on, 1 week off that I do now.   But I met a new friend at chemo this week, a woman a little younger than me who was having chemo prior to surgery, as I did.   I’m looking forward to talking more with her.

I have also signed up for the Noble Circle retreat.   This is a 3-day retreat in Indiana with other women facing breast cancer.   They promote a whole-foods, vegan diet and practice Qi-Gong.   I’ve put it off a couple of times, but I think I’m ready for it now.    After the retreat, we have weekly meetings for 10 weeks.   I’m hoping to learn a lot from this group.

Jeff and I will spend a week in DC soon, both of us on business.   I will be taking classes and an exam to become a Certified Information Privacy Professional.   Jeff will be working his territory which luckily for me is the DC area.   I am hesitant to travel alone, and having him with me will make this a much easier trip.   Hopefully we’ll at least get to have a nice dinner or two together!!