five years of living with cancer

Five years ago today, I was in surgery for what was supposed to be a benign fibroid and a routine TAH. That "fibroid" turned out to be a rare cancer, a sarcoma, Hemangiopericytoma. We really didn't get the definitive diagnosis until 2 weeks later, when the word came from Dr. Sharon Weiss  of Emory, that is was indeed a Sarcoma. That's when the roller coaster ride of fighting cancer started for me...

Through the past five years I've had:

20+ CT scans of the abdomen, chest and pelvis

40+ barium shakes and 20+ contrast IV's

2 PET scans

countless blood draws and needle sticks

2 abdominal surgeries

2 VATS surgeries

1 hospitalization for an intestinal blockage

3 trips to Dana Farber in Boston for 2nd opinions on treatment

30 radiation treatments to the abdomen/pelvis

20 radiation treatments to the chest
2 different chemo protocols

nausea, heartburn, diarrhea, constipation, and the aches and pains of healing,

numerous tears spilled along the way from anxiety, confusion, and fear.

but... in the past five years I've also had the unrelenting support of family and friends
lifting me up in prayer, sending cards, letters, flowers, delivering meals...
In that time I've had the joy of a wedding for my oldest daughter, and the life-changing joy of two babies being born into the family, our grandsons. 
Life is a challenge, life is good, life is full of joy making the hard times worth the fight. 
I'm happy to be celebrating 5 years today!

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!

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.

so many titles for this post...

It's me cancer, I'm back! How your life can change in an instant. 1 week post surgery. Never trust cancer...
all of these work, but especially the last one. I was supposed to be "clean", so said my April scan. But the cancer was most likely there, masquerading as a part of my colon. I didn't feel symptoms until it became large enough. I'd say 1/2 a grapefruit pushing between my vagina and colon would do it. 
I went to the emergency room last Friday with symptoms, and after a CT scan, they admitted me. I stayed the weekend on pain meds, drinking bowel prep and eating nothing. Nothing. After 3 days of eating light anyway. Monday morning they wheeled me into surgery. My daughter recounts me saying "keep your fingers crossed", and the nurse responding with "that will only cramp your fingers, praying works much better". I have to agree! Six hours later they wheeled me out. Minus one 10 x 6 cm tumor, 2 lymph nodes and a shorter colon, but no bag needed, thank you Lord and Dr. J both. 
I am so grateful for my exemplary doctors and nurses. You are totally in their care. Half the time, at least the time under or coming out of anesthesia,  you don't really have a clue whats going on. Ask my family about that. There's that crazy time when you're inbetween anesthesia and pain meds and not in the real world. I had some scary narcotic dreams then... so vivid and zany. I was almost afraid to go back to sleep for where I'd go. 

As for the nurses, they are deserving of their own post, I've got a lot to recount about them. 
And my family... my support system, my rock, my strength. Thank you. I love you all more than life itself. Thank you for being by my side through all of it. I went to the emergency room that Friday thinking I would have some sort of procedure and be out by late afternoon, so I didn't even tell anyone I went in. I knew when I called my husband I wouldn't be able to get the words out w/o tears. "I have a mass" I repeated since I'm quite sure my first high pitched attempt was inaudible. He was there with me w/in 30 minutes and has been by my side ever since. He is a wonderful caregiver, the best nurse you could ever ask for. I am so grateful to be surrounded by family love. All my daughters, my sils and my grandsons are here. That's why I heal so fast... it's the love from all of them, it's the best medicine! xoxo

from up to down in this crazy ride we call life

I'm laying here in the hospital, waiting to go in for surgery this morning. It all started when I had symptoms that I thought were constipation turned blockage and was told to get to the emergency room. They ordered a CT scan. That was the big reveal.... no blockage, but a "mass", similar in size to my original sarcoma 4 years ago.  Where did that come from??? In April I was clean , so in less than 2 months I grew a 10 cm x 6 cm tumor that's invading my pelvic space...  It's coming out today.... I'll  keep you posted

recovery and new beginnings

It's a beautiful sunny day. A new year with new goals to accomplish. I could make a list, I should make a list, just to stick to it and actually start something!

We have some intense home improvements coming up in a few weeks. My kitchen cabinets and countertops will be ripped out and replaced. After, before or during all that I want the entire main floor painted, trim too. And at the same time, the wood banisters will either be sanded and re-stained or replaced and stained, and we'll finally add those iron balusters I have sitting in the garage. I have the mess and chaos to deal with first, but then I get to enjoy the clean newness of it all. I'm looking forward to all of it, except for dealing with my dogs barking for 2-3 weeks! Hmm, they may have to go on a vacation.

My daughters and I have a baby shower to plan for my new grandbaby due in May. Invitations, a fun theme, colors to use... all fun and creative. I better start brainstorming!
Sewing to be done for that same new grandbaby. I'll make his nursery bedding and curtains like I did for Carter.

Exercise. Getting back to it. I've done absolutely nadda for the past month. Recovering from lung surgery and also this evil upper respiratory virus has left me with almost zero energy. Still. I have 4 more days on antibiotic and then I hope it's all a distant memory, and I can get back to feeling normal again. My VATS recovery this time has certainly been rough. I still feel the soreness, inside, where the incisions are. My post appointment is this Wednesday, so we'll see what the Doc says.
And then, I don't go for another scan until the end of April. That will be 5 months of not seeing what if anything is going on. That's a long time. I'm hoping once these "reminding pains" go away, I'll be able to enjoy those months without thinking about my health. No thinking, just enjoying. Playing tennis and golf again and being outside in the beautiful fresh air. Feeling good.

New beginnings!

to all my blog friends and gal pals...

Recently, a friend sent this to me and I want to share it with you...

"A thought to share… on the mind-body connection--the relationship between stress and disease. The speaker (head of psychiatry at Stanford) said, among other things, that one of the best things that a man could do for his health is to be married to a woman whereas, for a woman, one of the best things she could do for her health was to nurture her relationships with her girlfriends. At first everyone laughed, but he was serious. Women connect with each other differently and provide support systems that help each other to deal with stress and difficult life experiences. Physically this quality "girlfriend time" helps us to create more seratonin--a neurotransmitter that helps combat depression and can create a general feeling of well being.

Women share feelings whereas men often form relationships around activities. They rarely sit down with a buddy and talk about how they feel about certain things or how their personal lives are going.

Jobs? Yes. Sports? Yes. Cars? Yes. Fishing, hunting, golf? Yes. But their feelings?--rarely. Women do it all of the time. We share from our souls with our sisters, and evidently that is very good for our health. He said that spending time with a friend is just as important to our general health as jogging or working out at a gym!

There's a tendency to think that when we are "exercising" we are doing something good for our bodies, but when we are hanging out with friends, we are wasting our time and should be more productively engaged--not true.

In fact, he said that failure to create and maintain quality personal relationships with other humans is as dangerous to our physical health as smoking! So every time you hang out to shmooze with a gal pal, just pat yourself on the back and congratulate yourself for doing something good for your health! We are indeed very very lucky. Sooooo let's toast to our friendship with our girlfriends. Evidently it's very good for our health!"

You are all good for my health and I thank you for that! A cyber-toast to us... and let's all keep shmoozing!