Sarcoma treatment update

The month of April I've had radiation to the chest mass near my heart everyday for 20 days. The only side effect I've felt is some skin burning and peeling on my back like a bad sunburn. I go for 3 more stereotactic treatments to the other lung mass starting this week. After radiation, we'll concentrate on my abdominal masses. I have an appointment tomorrow to meet with a Sarcoma Surgeon to discuss my options for surgery. Wednesday I meet with my Oncologist to get her opinion and plan from here. I know she has a few different chemo's in mind to try. Since my cancer is systemic and not all of it operable, I know I will have to do chemo, but it's such a "crap shoot". No guarantee it will work but with side effects that wreak havoc on your body. I'm hoping surgery is an option for these new masses. We'll know after tomorrow. 

1st week on Temodar + Avastin

I'm currently on the "off" week of every other week on the pills and infusion. I was feeling pretty good the first week I took the pills, and grateful for that. One of the side effects from Temodar is constipation though and this past weekend that hit me hard, no pun intended. I will watch my diet a bit better from now on and make sure I stay more regular. Digestive issues have been the biggest side effect from treatment for me, from radiation to the abdomen and also my chest, and now on chemo. I've lost ~10 lbs since all that started last August, without trying to of course. I try to eat well when I feel good, lots of protein and calories. I'm not drinking wine very often though and that alone could account for half the weight loss. 
I start the pills again on Thursday... here's to the 2nd round going well and staying on top of the side effects!

Sarcoma status from February Dr. visits

Mid month it was time to be scanned to see if December's chest radiation had any effect. I met with my Radiologist to discuss the results on the Thursday after Monday's CT scan. He was pleased with his work and said it looked as though the 2 lymph nodes we had targeted showed signs of "necrosis". Friday I met with my Oncologist and he wasn't so sure the radiation had worked. He said our next step would be chemo, but not sure yet what drug. I then met with Dr. Force the following Friday to discuss what he could do for me. He didn't think the lymph nodes had been effected either and we still needed to deal with the 4 lung nodules. We reviewed the CT scan with him and he pointed out that the lymph nodes were inoperable and 2 of the lung nodules would be difficult to get and most likely not yield clean margins. He couldn't help me this time. This was quite a blow to me... he had always been my go-to guy, my surgery-savior, to rid my lungs of the metastases. That option was gone. I cried all day long.
To take charge of my options for chemo I decided to see a new Oncologist at Emory, Dr. Movva. She had been on staff for ~2 years and was their Sarcoma Oncologist-Guru. She presented me with a research paper, a study done at MD Anderson, of 15 patients with my exact Sarcoma, Hemangiopericytoma. The study was for 2 drugs, Temodar plus Avastin. We talked about my cancer and she was so educated and smart, and had reasons for what she wanted to do. She gave me hope, I signed her up as my new Onc! 
I started the Temodar on March 8th, I take 200mg per night for 7 days, then on the eighth day do a 2 hour infusion of Avastin. I'm on Ativan and Compazine as pre-meds for nausea. Except for the first night where I was sick for 3 hours, so far so good. We'll see what side effect if any the Avastin adds this week. 


I'm grateful for my new doctor. I'm grateful for medical research, although rare in the Sarcoma world, that there is some new drug protocol available to try. I'll do a 2 month cycle and re-scan. 
Praying for great results!!!

2 days at the Ritz followed by 2 nights in the hospital

It's never dull around my house. I like to be always doing something, but somethings you just don't plan for. We got home from the Ritz at Lake Oconee on Thursday evening. Friday I had made plans but had to cancel them when I started suffering from intense stomach pain. I ended up throwing up and feeling better, but then that only added to my "acid esophagus" I still have from the chest radiation. Saturday I went shopping with Alex for a bit, but never quite felt like eating anything, so by dinnertime I was hungry. I made chicken and dumplings and it was sooo good. Sunday morning  we had pancakes, no coffee though, and by mid morning I was in pain again. Bad #10 pain. It lasted all day with no reprieve, so by the evening I emailed my Oncologist to ask what to do. The chemo drug I had taken for the past month can cause severe stomach pain so I thought it could be a side effect. He said to be safe and head to the hospital for a scan. So off we went... checked in, drank the contrast, had a CT scan, got the results: partial small bowel obstruction from adhesion's. Adhesion's is a side effect of the abdominal radiation I had in August to September. They had already started me on IV fluids and now wanted to admit me to stay on the IV and see if that would relieve the blockage without having to do surgery. I stayed there, on IV fluids for ~ 36 hours, adding a liquid only diet the 2nd day. I wasn't in pain anymore and it seemed to be working. Thank goodness! I did not want to go through another abdominal surgery! I'm being a good patient and eating only soft foods and liquids for this whole next week. I want to make sure it doesn't happen again. Cancer has so many negative effects on your body, little by little the treatments wear you down. I'm still feeling the effects of my recent chest radiation and have heartburn daily. I'm just not feeling good right now. But I will! I need to build myself back up! Protein drinks are my new best friend. Working my way back to health.

Day 1 of chemo... wham!

Wow, didn't know a drug could work so fast. I took my first dose of Temodar last night before bed at 10:30 and by 2:00 was up sick. Now I know, so tonight I'll take the anti nausea med first and hopefully fight off the nausea and sickness. It's making for a rather yucky morning. I think I'll be off coffee until this drug is all done with. One of my indulgences I'll have to do without. Oh, and no wine either. Besides not needing or wanting the acid taste, you're supposed to stay away from alcohol. It will be easy. Somehow you lose your appetite and taste for the things that are bad for you. So I had a bottle of "Ensure Immune Health" instead this morning, creamy milk chocolate shake, yum! 
Today will be day 3 of radiation to the chest. There's an X on my chest, right above my cleavage (or lack there of) and slightly to the right side where they are targeting. So far so good. Everyday at 10:30am I'll be there. 
I'm hoping to run one last bit of Christmas errands today afterward. I think this may turn out to be a long week with the start of chemo... so I better get it done!

why am I crying when I should be celebrating?

Crying... is it a stress relief? You've put in your time, suffered the harsh side effects, hoping they will fade away and eventually you can get back to normal. Or, is it the fear returning that although you're done with this part of the battle, you really don't know the outcome. Did you win? You don't know if you've beaten the enemy or he's just hiding and biding his time before showing up again.... months or years down the road. The worry is still there.
It feels like a recuperation is in order... a restful trip, a time away to rebuild my body and soul. Give me strength emotionally and physically, make me happy and whole. 
I pray this for all my comrades fighting cancer, for all the people I met at radiation, and for all the friends I know that are battling a lingering disease.  Find your strength. Find the little things that bring you joy. It's okay to cry... it releases yourself to be able to rebuild.

it's been too long...

three weeks have come and gone since my last post. So what have I been up to? I've had radiation treatment everyday at 4:00. I've been "radiation sick" as my Onc calls it, just tired and nauseous all the time, mixed with bouts of upset digestive tract. As of today though... I only have 4 days left! I'll be so glad when it's over and my body can heal and I can begin to feel better and eat normally again.
I told myself that through the treatment , I would do as much as I could as long as I could, so it hasn't slowed me down too much. I've played a little golf and tennis, lunched w/ the Gal Pals, met with a friend to advise her on her wedding plans, showed property to my youngest daughter as her Real Estate agent, babysat Carter and visited with baby Nathan just this past week. I love my grandboys! Their little smiles light up my life!

 music class with Carter and Nathan

 just being the cutest baby ever! love his sweet smile

 playing at the park

 our new yard guy

 We had so much fun visiting with Kristin and Nathan 

and babysitting Carter while his parents were in Vegas. 

what's been going on...

After the first 2 days of radiation, I flew to Orlando for the weekend to visit K&R and little Nathan. I've been able to see him every month so far and wanted to go if even for just a short visit. I got to see the house they'll be moving to, eat out at some great restaurants, and play with Nathan for 2 days. 

A quick visit because I had to be back on Monday for treatment. 

Fall tennis has started up again and I played for the first time since my surgery in June. It all came back to me and I felt great but it was only 1 hour of practice, we'll see how my stamina is in a match!

I've also played golf with the Gal Pals 3 times and once with Drew. It was so much fun to be back out there again. I'm a bit rusty and not as strong as I had been. It takes a few more stokes to get down the fairway, but I'll get back to where I was shooting eventually. 

Kelly and I are finally working on her master bedroom re-do (her birthday gift from March!). We painted the top of the wall Glidden "Navy blue" and wallpapered the lower 2/3's with beadboard wallpaper from Lowe's. It's been quite awhile since I've wallpapered, but it came out great! Today we cut the chair-rail trim for between the 2 sections. We still have to paint the wallpaper "trim white" and nail up the chair-rail and then we're ready to accessorize the room!
We started the Labor Day weekend out at the Lake house, but came back early on Sunday afternoon because the rains from Tropical storm Lee were on the way. We packed a lot into the short time we were there. We went out on the boat and Carter swam in the lake with us and even went tubing on our old Big Bertha with Kelly. We blew bubbles all weekend and just played and had fun. Auntie Alex held out giving Carter pretzels until he said her name, guess what? he did!

Tomorrow it's back to my daily schedule of going to treatment every afternoon. 12 down 19 more to go. I've felt a few side effects... I have a low grade nausea that comes and goes, and I've had to watch what I eat so I don't have to take too many Immodium. I really have to do better with that. I learned that pizza is a big NO, and salads are not good either, or any vegetables for that matter, while on radiation! Tomorrow I start my bland only diet! 

I feel like I still have a good amount of energy, but they keep telling me that will dwindle. I'm just trying to get as much done as I can before that hits me. 

So tomorrow... we work on the bedroom again! I can't wait to show you the finished room.

staring at the ceiling...

I started my Radiation treatment today. I went in for "staging" last week and earlier this week, so today they were ready to add the beam. Once the machine started, I became a bit anxious laying on the flat table, my legs securely held in their form-fit foam mold, my hands above my head holding onto two pegs. The head of the machine rotates around your body, giving off what sounds like a horn noise when the beam is shot. You think about lying perfectly still, breathing evenly so the beam is "shooting" only it's intended target and nothing else. I realized after awhile that their is someone in control back there, like the Wizard of Oz behind the curtain, who could stop the beam if I freaked out and moved. To take away the anxiety and keep myself calm I sang hymns in my head as I stared at the cross on the ceiling. Seems they had to cut a cross out of the ceiling tile directly above to let these two red beams shine through. I think they're for lining-up purposes. But it's a perfect cross, and a symbol to me that I should pray. So I sang hymns, prayed and chanted "kill cancer" for the however many minutes the machine moved around my perfectly still body. You can't feel anything, but I imagine the cancer cells inside of me are getting whacked off, dissolved by the fog-horn zap of the beam. Let's hope so.

true confessions of a cancer patient

I didn't think of myself as a "patient" until recently. I thought I was a survivor, hoping I was done with the worst of it. But then in June, the recurrence came and took me by surprise. I really have to say, I never once thought "cancer" when I went to the Emergency Room with symptoms. Naive maybe? 
So, I had my second abdominal cancer surgery. This one was tougher to heal from, probably because of the vertical incision and also because they took out 8" of my colon. I'm 7 weeks post-op today and still feel the tenderness of the incision, and the effects on my bladder and bowel. For the most part I feel good, but I haven't really done anything too physical yet. It's been a hot, hot, hot summer and not conducive to getting outside and exercising. The most I've done is walked. 
This time has been tougher emotionally too. My cancer is back, at the primary site, which means they didn't get it all. My doctors have told me that fighting this cancer will be a chronic problem. Sarcoma is a %#*! awful disease. Invasive and fast growing. I've done my research. I get all my reports and CT scans and pathology reports to keep, and I've read all of it. It's difficult to read that the pathologist has written "this patient has a poor prognosis" or the surgeon writing " This patient is at a high risk for a recurrence". 
So when the doctors started talking radiation, I knew I didn't have a choice but to do it. I admitted that I haven't been afraid of any of my surgeries, I've gone into them with confidence, but this is different. I'm scared. I went for my treatment staging today. The nurse was going over a few things and wanted me to sign some paperwork. She read it over with me... the possible short term and long term side effects... I couldn't sign it. I lost it and started tearing up... she said she'd have the Doctor come in and go over things again with me. I admit, I was a bit embarrassed, but my Radiation Oncologist has such a good "bedside manner" that he explained it all and calmed me down, and I signed the paperwork. 
After that I met with the CT Tech who set me up on the table and built a hard foam cushion for my legs so that I would be in the same exact position every time. He tattooed my hips and abdomen with 3 small dots so they could align the beam to be the same every time also. (It didn't really hurt, the tattoo needle, if I weren't already so marked with scars, I may think about getting one. Not really!) Next week, we'll have a run through before they hit me with the actual beam. There's a lot of calculations and measuring that will go on between now and then. 
I'll go every weekday for the next 6 weeks, the same time each day, for a 7-12 minute blast. I'll take an anti-nausea med before each treatment, since that's a common side effect. The hope is to rid my pelvis of any remaining cancer cells, and never have to have another surgery down there. 
Hoping and praying this works.