Chemo Round 2 - #5

Hi All, had chemo all day today, was in the recliner for 7 1/2 hrs. They took it slow to avoid any reactions and it worked!! Thank goodness. The good news for today is my CA-125 count is down to 43!! It was 52 last time. My Dr. thinks it might be below 35 next time which is in the normal range. So if you want to pray specifically, please pray for that. That would mean I would only need two more chemo treatments after that and, then only 8 wks to wait until I can have the surgery to reverse the ileostomy. So by my calculations, that would be around the last week of November. After Thanksgiving. I think that is a perfect time for more surgery, don't you?? I will be home and almost recovered by Christmas. The Dr. said, now don't plan on that date yet, I said, I know, just want to plan a little. I am really ready to get rid of my "bag". I don't like it at all!! So, the sooner, the better. I know many of my family members, are not so sure I should go "under the knife again", after what happened last time, but I can't be afraid like that. I need to have faith that with God's help, things will go well. (You can pray for that too, please.)

I had a great weekend up north. I felt pretty good. I am in less pain, and no longer needing to take the Vicodin, so happy for that. Doesn't mean I don't have discomfort, but I can bear it. They thing adhesion, or scar tissue causing that. Guess what, the Dr. really thinks it would be good for mean to try and go back to work. It scares me a a bit, but I will try. I need to start "conditioning" again. Will start walking around the block tomorrow.

I had the med that makes me hyper, so that is why I am still up at 12:30am writing this, not feeling at all tired. I will need to take an Ambien again tonight for sleep. Went to the Hope Play tonight, "An Inspector Calls" a British play set in 1912, very thought provoking and enjoyable.

Thanks to my grade school friend Helene, who came and sat with me today, bringing me soup, from "Zoups" and homemade chocolate cookies. We had fun talking and we are looking forward to next week getting together at their new summer cottage in Montague, MI.

Tomorrow is a busy day, I have an appt. with the ostomy nurse at Holland Hospital. I have been having some problems in that area, and thought I should spend some time with her and make sure I am doing everything I can to make this thing not such a PAIN, literally. Then, I need to race over to the dentist office for a teeth cleaning. Can't wait for that, something about chemo makes me very sensitive about my teeth bugging me, if they don't feel clean. Weird I know.
Then at night it is time for LNO, Ladies Night Out with the neighborhood girlfriends at Boatwerks, can't wait. Two more kids weddings in the group, Aug. and Oct., so we need to hear how the plans are going.

Plans have been underway for a while now for a big weekend coming up. We are celebrating my parents 60th wedding anniversary and my Mom's 80th birthday. We are having approx. 40-50 people up north at our two cabins for the weekend. We are having a Detroit Tiger Party for Mom on Sat. night, and on Sunday a Pig Roast with all the fixings and a special around a bonfire Tribute to Mom and Dad, devotions, campsongs, stories, skits,and who knows what else, led by Jim, an old friend of ours who plays the guitar and does this kind of thing all the time.  If it is really hot, we may have it in the log home in the AC, we will play that by ear. So we are really looking forward to this special gathering. We pray for safe travels for family and friends coming from OK, VA, KY, and all over MI.

Alden and Mary are hiking and camping in Yellowstone, so they will not be able to be at our gathering. I pray they have a fun, safe time and don't get eaten by any bears.

Wedding pictures are here! There are lots of fun shots (please ignore Aaron in his boxers for some =] ). If you go to his website (use the link below) or mironphotography.com, go to clients, wedding, Aaron and Mieke. You can use any email and then our password is "mutschler". This site is just for viewing pictures, he will send the DVD with all the pictures on them so we can upload them onto our computer and print whichever ones we would like. There are a ton of pictures so my advice would be to scroll through using the page numbers at the bottom and click on the ones you would like to see closer.

Wed. Aug. 1 is the official 1 year anniversary of me finding out my diagnosis. I am really happy to still be here and doing so well. I thank all of you again for all the support, prayers, cards, meals and soooo many more forms of caring that I can't even mention them all. I truly hope and pray that I am around for many more years, and I can treat this cancer like a chronic illness instead of a death sentence.  How does one celebrate such an anniversary??? Not sure, any suggestions?

I better hit the hay.......

Almost a year now.

Stan just posted again some reflections he has of the past year on his blog.  Lately I have have had some harder times getting on top of all the things going on. Check out Stan's latest writing. He has not written on this for a couple of months but posted something to reflect on the past year. It is hard to believe it has almost been a year now.  I have had a hard time feeling good lately.  Wish I could tell you different but that is the way it is. 

Chemo Round 2 - #4

I think yesterday is the first chemo day that I didn't get a chance to do a post. Rumy's parents were here for the last night and made us dinner. Alden and Mary came and Mieke was here, so the whole family (except Aaron who was working) were here for supper. After dinner we went out to sit by the pier and enjoy the beautiful evening. Alden then treated us to ice cream at The General Store.

Chemo day was LONG, I was there from 9am-5pm. My platelets had gone up nice with the two week break. I had all my prechemo drugs to help fight off the side effects. The first drug went fine, but shortly after they started the Carboplatin, (which was supposed to only take a 1/2 hr.) I started to have a severe Histamine reaction to it. I got as red as a tomato with hive like patches on my chest and arms and hands. I got real hot and felt a heavyness on my chest. They immediately turned it off, got the Dr. they gave my more IV Benadryl, so another chance for a nap, some more IV Decadron (steroid) and soon I was feeling better. They then restarted it very slowly. This drug has a cumulative effect and it is more common to have this reaction after 7 cycles of it, which I am now on my 9th I think. What they will do in 3 weeks is have me start taking some drugs 2 days before chemo to try and ward off the reaction.

I did finally get the results back from the CT-scan that I had done on 6-29.  It shows that I have moderate left pleural effusion with associated left basilar compressive atelectasis. In lay man's terms, it means I have fluid between two layers of my lung and some slight collapse of the lungs which explains why it hurts with I take a deep breath or yawn. I am sure it is still a result of the fluid I had drained from my lungs in the hospital. I do try and take deep breaths all the time to get rid of the fluid. It also show a soft tissue nodule 11x7mm near my small bowel. They don't know if it scar tissue or cancer. There is continued healing of my incision, but no fluid collection to suggest an abscess. So there is really nothing they can do besides chemo to the abdominal pain. I think this last round of antibiotics helped the incision a lot.

Today I feel quite wonderful with the double dose of Decadron. Grandpa and Grandma Hoksbergen treated us to breakfast at DeBoer Bakery. We then did a marathon shopping tour of lots of store and they did some last minute gifts buying for relatives in Bulgaria. Stan is driving them to the airport in Chicago with Rumy. Ross had a Grand Rapids Symphony rehearsal and was not going to be back in time.

We had a wonderful week up at the Homestead. I did have some crazy pains during the week. It was almost like my body saying, you need more chemo. As long as I stayed on the Vicodin I was OK. It was a hot week, but for some reason our house there stays nice and cool inside. The breeze from the water is also nice. My parents were up next door and got lots of projects done. My Dad is feeling good these days and amazed us with his energy. Jackie and Mel came up for a few days too. Jackie make an emergency fun for me on Thursday. I somehow didn't bring enough ileostomy supplies along. I will never do that again!! Thanks again Jackie. One morning we just sat on the deck in our pjs until 1pm watching the humming birds, the regulare birds, the fish jumping in the pond, and watched the thermometer go from 80 to 100 degrees. We were sitting in the shade and it was quite wonderful. In the afternoon, we put on our suits and floated in our blow up rafts with pillows in the pond, Heaven!!

This Thursday we hope to go to the Picnic Pops concert at Cannonsburg. It is all familiar classics and it finishes with fireworks. Ross will be playing with the GRS.

Chemo will be every 3 weeks now, how exciting! I may not have much to report in between time. They did review my CT scan at last Friday's tumor board and they said that I would for sure have two rounds of chemo after my CA-125 is in the normal range. Enjoy the beautiful sunshine! Deb

Great Visit with Rumy's Parents

Here we are having dinner with Rumy's parents. They are lots of fun and very easy to have around. They came armed with lots of gifts from Bulgaria. Valentin and Antoaneta, or Tonie for short. We have taken all  your wonderful suggestions, Windmill Island, Dutch Village, we climbed Mt. Pischy (that about killed me!). We have been downtown, saw some street entertainers, today we went for a boat ride on our friends Paul and Karen's boat.

Ross and Rumy performed outside at our church today. I think they did great, I was very proud of them. My parents were also there, along with some old friends of theirs from GR, and my Aunt Margie and her fiance were also there.

We are all tired out from all the sun and fresh air tonight. Tomorrow we leave for a weeks vacation up at the Homestead. Stan will work some days from there. I had my CT scan on Friday and I am anxiously waiting for a call from my Drs. office sometime soon with what they found. I did not have my platelets checked on Friday, they were pretty sure they would still be too low for chemo tomorrow. Plus the nurses said, people take off for vacation all the time, so I said sounds good to me!

Thanks Karen for my birthday cake!! We enjoyed it very much. I also want to thank Lori and my grade school girlfriends, Ellen, Jean and Helene for my flowers. Such fun!!

We saw a sunset from the pier at Holland State Park and then had to take a picture in front of Big Red, which people call Big Pink because it needs a paint job.

Valentin is very handy and has fixed lots of things around here. He loves to bike so he has rode the bike many times to the state park. He had fun garage saling this past weekend. They are amazed at so many things, the cleanliness of the freeways,( no garbage), blowing the sand off the paths at the park, sprinkler systems, and lots more.

Sat. Ross had a wedding to play in St. Joe, MI, so we rode along and had fun seeing the beach there and the historic downtown. I have to admit, I had never been to St. Joe before. We stopped in Saugatuck on the way, and walked on the path with all the huge boats.

I won't have access to the internet up there, so I wanted people to know why I am not posting anything new. Talk to you later!!

Results In.....

My CA-125 yesterday was 51. That is down from 65, 3 wks ago. Normal is below 35.

Mieke did a Skype interview for a teaching job in Garden City, Kansas. They just offered her a job there teaching 1st grade. They will give them $300 towards traveling there and put them up for 2 nights. I told her to check it out, but not commit until all possibilities closer to home are exhausted. Anyone know anything about Garden City Kansas?  It is 16 1/2 hrs. from Holland, that is a bit too far for me.......... We'll see what happens.

Watching the Game - Nothing the Same

I am sitting here watching the Tigers and they just got 5 runs in the first innings. Wow, that doesn't happen often. But, it is lots of fun. My sister-in-law Nancy met me at chemo today in GR. Well, my platelets were too low to have it. So instead we went to Roses for lunch and then did a little shopping after picking up many new prescriptions.

I saw the Dr. and told him about my very sore incision. He ordered a CT-scan for that. It will be scheduled soon. He put me on antibiotics. He said that I will have 3-6 sessions of chemo ( a session being once every three weeks or once a week for three weeks). It all depends on what my CA-125 does. So now I am planning on chemo all summer and maybe into the fall. I will start having it once every three weeks. I need to have my platelets rechecked on Friday. The nurses doubt it will be high enough to have chemo on Monday, plus I was planning on being up north for the whole week with Rumy's parents and I want to feel good. They said people take a week off for vacation all the time, so that is probably what I will do.

Stan and I had a good weekend up north. My parents were up at their place too. We went into Cadillac for church and then they took me out (and Stan) to brunch for my birthday. We went to a great little place called Lakeside Charlies. They had the best brunch for $11.95. We will definitely go back there. We went back to Cadillac at night for a free bluegrass concert on Lake Cadillac that evening. It was a perfect night to listen and sing along to lots of old hymns and songs.

Rumy's parents made it on Friday night into Chicago. They were worried, because they first got the 
word that they would be stuck in Wash D.C. because of mechanical problems and not make it in until the next morning. Well, they must have found them a plane because they arrived about three hrs. late. They had a wonderful weekend in Chicago, walking around, her Dad didn't stop snapping pictures. They were amazed that there was no trash on the freeways. They saw a concert in Millineum Park, went to the Art Museum, top of the Hancock building and lots more. Ross said that they just love everything and are very easy to entertain. They are in Lansing for a few days at Ross and Rumy's house and we are looking forward to meeting and having them stay here with us starting on Thurs. night. What are people's suggestions to show a couple from Bulgaria in Holland and Michigan??

Until they figure out what is going on with my abdomen, I will take my pain med and then I can function. Thanks for everyone's kind words of encouragement during these past couple of weeks.
The Tigers are now winning 6-0, yeh!!

Still Not Feeling the Greatest

Got my two units of blood yesterday, and I am still waiting for a big boost of energy. Mieke did not get the position she interviewed for. They decided to hire someone with lots of experience. She said the interview went well. We are bumbed for her.

It's now Thurs. afternoon. All day yesterday I had the chills and sat wrapped up in a fleece blanket, no AC on and it was 92 outside. I needed to feel better to go to Mieke's and help her fill up the china cabinet that Jackie gave her and we painted it black and put new pewter hardware on it. It looks so good, right out of Restoration Hardware. She loves it and thought Jackie and I should have the fun of putting crystal and dishes in it. I took a couple of pain pills to makes me want to get out of my chair, so I felt OK when I was there. She made me dinner on her new grill,(first time she lite it by herself) and didn't blow herself up. She has a nice pool at her apt complex, so the three of us went down there and enjoyed the nice hot evening.

When I got home, my meds were wearing off and I started to chill again. I took my temp and it was 100.1. I dug out the instructions from the Dr. office, at what point do I have to call them again?? It is with a temp of 100.4. So the next time I took it, it was 100.8.  Talked to Dr. Downey, he said to take some Tylenol to help sleep, if still elevated in am to call the office. Well it was still up today, so they sent me to Holland Hospital for blood cultures, urinalysis, and CBC with diff. I was so hoping they could do this in ambulatory care rather than going to the Emergency Dept.  Well, they did, but it took awhile to call and have them refax the orders. I always wonder, where do those orders end up?? They insist they sent them and now one on this ends has seen them. hum.........  Well, thanks to my friend Karen for taking me in. I did have to teach her how to thrift store shop on the way home, went in a couple.  So, I imagine everything will come back negative, maybe a delayed reaction to the blood. Sometimes that happens. But, I am glad they are better safe than sorry and hop on things right away.

I talked to Amber the nurse in the oncology office and told her, I am still in pain a lot of the time, and what is going on? She said the Vicodin is a narcotic and it will always make me feel better, so try and only take a half a tab. She said it's not that I am getting addicted, but it is habitual.... Sounds like the same thing to me. So I am now toughing it out.........only over the counter stuff.   Will let you know if there are any interesting developments.