Things have changed

     Well, things have not been going in our favor. Bruce is doing well but his cancer antigen,CEA, has been climbing since the end of December  but his doctor has been unable to locate the cancer on Bruce's scans and since Dr. Percent  doesn't no where the recurrence is, it can't be treated...so we wait.

     My cancer antigen (CA 125)  on the other hand had been normal until March 30. I was working in Iowa on April 2 when I found out the results. It was really a bummer being in a hotel room alone when I read my results. What was even worse has having to go to work that night & two more nights before getting to go home. I decided then & there that I was done. I am having problems with short term memory loss & trying to work 12 hour nights & possibly not being able to sleep during the day only made it even harder to concentrate on not forgetting something plus I knew I wouldn't be able to handle chemotherapy & working. I know others do but traveling & working long hours just wouldn't have worked.

     I saw Dr. Orr on the 6th, had a PET scan on the 16th, saw Dr. Orr again on the 17th and started chemotherapy on the 22nd.  Obviously, my PET scan was abnormal. Dr. Orr didn't feel that surgery was an option...nodules were small & could be difficult to find laproscopically and an open procedure
(surgery)would delay starting chemo by 28 days. I am also right on the border of my relapse being due to my cancer being resistant to Carboplatin (one of my previous chemo drugs). Apparently if you relapse within 6 months of finishing chemotherapy with Taxol & Carboplatin your Ovarian cancer is considered resistant to Carboplatin. I relapsed at 7 months. If I would have relapsed at 9 months then my cancer would have been considered sensitive to Carboplatin & if I had relapsed at 3 months it would have been considered refractory to Carboplatin. So what that means is that I am back on Taxol & Carboplatin but am also on Avastin which is an even more scary drug then Taxol & Carboplatin. It has a lot more potentially dangerous side effects. I will be on cycles of 3 weeks...meaning each cycle is 3 weeks long with 1 week off between cycles. I will receive Taxol & Carboplatin each of the 3 weeks & will receive Avastin every other week. This coming Wednesday will be the 3rd week of Cycle 1 & I will receive all three drugs. So far no problems. I have lab drawn every Monday & chemo is every Wednesday. My lab varies.  I will be getting a repeat CA 125 & extensive lab every 4 weeks. For the other labs in each cycle I get a complete blood count & a basic metabolic panel which checks my blood sugar, electrolytes & kidney function.

     If I don't have a significant  drop in my CA 125 which is 83.8 (0.0-34.0 is normal) then we will be changing my chemo drugs even more. My next CA 125 is May 18th and hopefully won't have anything else to write about until then.

Once again I am waiting for the results of my CA 125(cancer antigen). I also see Dr. Orr next week. So far so good for me. I wish I could say the same for Bruce. His cancer antigen is going up. It is now above what it was when he was diagnosed. He has been scoped from both ends with no signs of tumor. He has had a PET scan that is showed a couple of low level signals in the abdomen. Today he will have a CT scan of the abdomen & pelvis. It's frustrating knowing that there must be something somewhere but not finding anything. Hopefully it won't take too long to get the results. The waiting is what is so hard.

He is feeling good & maintaining his weight. He does have to watch what he eats & how much but is doing a lot better then he initially was after his surgery.

We both are getting other things taken care of...going to the dentist. We both have had problems that we have put off...I got my crown glued back on & a cracked tooth fixed. Bruce will be getting his implant fixed. I also had a hearing test & have a 35% hearing loss in my left ear which could be from the chemo. I will probably get a hearing aid. I am also going to have a sleep study. I probably have sleep apnea & think I would feel a lot better if I could a good night's sleep every night.

Our vacation was great. I think we all had a great time. There was a little snow. Tye, Brannon, Anita & Robbie went tubing while Bruce, Aiken & I watched. The 3 of us also did a little exploring. With Aiken there is no sitting around. He just has to be moving all the time.

Last but not least I have decided to retire in June. I had hoped to stick it out a little longer but I am burned out. I am working a 4 nights in Fort Madison, IA right now & will probably work another 4 in May & then I think I'm done...that could change but I doubt it.

Bruce's CT results.

Bruce's CT of the brain was normal. There is no explanation for the elevated CEA. It's now a wait & see. Bruce will have repeat blood work (including a CEA) on  March 26th & CT of chest, abdomen & pelvis on April 2nd. Time is passing quickly & we both feel pretty good. We had a great time in Key West with my sisters, Julee, Michele, Vicki & Cherie, as well as cousin Bob & brother-in-law Bob. We missed Denise & Jim but hopefully we will all be able to get together this summer. In a week Bruce & I along with Tye, Brannon, Anita, Robbie & Aiken will be vacationing in Williamsburg, Virginia. Robbie is hoping for snow to play in...for a day & then the rest of us are all hoping it will warm up. No matter what I'm sure we will all have a great time.

PET scan results

Bruce had his PET scan. He had two spots on it. One at about the scar in the esophagus from surgery & the other was in his colon area. He had an EGD today...scope of his esophagus, stomach & duodenum. Also ultrasound of the same area. It was normal as was the colonoscopy he had on Friday. So today was also a waiting game on his blood work. His anemia is improved but still didn't have his iron studies, comprehensive metabolic panel & most importantly his CEA (cancer antigen). Sent Dr. Percent a text about the EGD & colonoscopy & asked if he had results of CEA. He hadn't seen them as he only works 1/2 days on Mondays but did get them to us. Unfortunately Bruce's CEA is elevated. It was 7.4 which was elevated & is know 8.2. Dr. Percent said that the only place we haven't checked is Bruce's brain so tomorrow Bruce will be having a CT of the brain. We were planning on going to Key West on Saturday for a week's vacation with my sisters & my cousin Bob who was diagnosed with lung cancer.Hopefully we will still be able to go. Will definitely depend on what the CT shows & what Dr. Percent thinks we need to do next. If I feel like it I will update this blog tomorrow when we know the results of the CT. As always, have cried a bit & tonight I also had a couple of drinks. Now I'm going to bed.

Bruce's CEA results

Well, Bruce's follow-up didn't go as well as mine. His CEA which is a cancer antigen came back elevated. It was 7.2, normal is 0-6.1. It's not up much but was 3.3 when last checked so is concerning. The nurse practicioner that saw Bruce said 'we' would just recheck it in 1 month to see how it was trending. WE didn't like that approach so discussed it with Bob, our brother-in-law, who is also an oncologist in Des Moines, IA & he felt that Bruce should have a repeat PET scan & an upper endoscopy. We had already discussed Bruce getting a Colonoscopy with the nurse practicioner who is going to refer Bruce to Dr. Joseph who did Bruce's jejunum tube placement. We talked with Dr. Percent & after some discussion (including Dr. Percent talking with Bob) Bruce had a PET  scan done on Friday. Hopefully we will get the results tomorrow. As always waiting is very hard & as always its hard to know what is going through Bruce's head. I'm doing okay now...but that's after 2 mornings of crying while doing barn chores. It's hard not to when I get to talk to Bob who is so blunt about our survival percentages based on the stage of our cancers when they were diagnosed. I just hope we know where things stand before I fly to Iowa Wednesday for one week.

My CA 125 Came Back

          It was normal...yeah!!!  It's sad though, my doctor's office never called the results to me. Sure glad I could access the results on line. Something so important you would think his nurse would have
called. Who knows, maybe they knew I could access the results or expected me to call for the results.
Or...maybe Dr. Orr has lost another nurse. He's on his third one since I started seeing him.

           Went to work last week. It was very busy & I was exhausted by the time I did 5 night shifts and I flew home.  I think in the future I will not work more than 4 shifts. I am currently scheduled for 7 & I hope to get rid of the 3 shifts on the end but if not I will do them but never again. Well, getting ready for Christmas.  Our son Tye is home for the holiday so everyone will be here. Got lots to do to get ready. Will write again after Bruce's follow up.

3 Month Check-up

                       
       It's been 3 months since my last chemo.  Bruce & I have been doing quite well. I seem to have some neuropathy but it is very very minimal and I also have short term memory problems especially if I'm not getting enough sleep. It's frustrating at times for me & Bruce.  I finally asked him not to remind me that I already said the same thing at least once before.   I can't help but worry since I have a strong history of dementia as well in my family.  I also worry every time that I have a little dizziness which most likely is due to low blood pressure but I always wonder, I worry every time I get a pain in my abdomen, have loose stools, and worsening vision. I know these all are probably nothing but....it could be something...it's sooo frustrating.

       I was to see Dr. Orr but he was called out-of-town emergently & so I saw his PA, Denyse Mahoney. She was very thorough. I should have had my blood drawn prior to my appointment but Dr. Orr seems to be going through nurses (on his 3rd since I first saw him) & it never got ordered even though I called several times & even stopped in to ask about ordering it.  Yesterday I got  my CA 125 (cancer antigen for ovarian cancer) drawn. Hopefully when that comes back the results will be normal & then I can stop worrying quite so much...but I doubt it. I will probably continue to worry some until I either relapse or 2 years have passed. Well, not much else to say about me...it could be a week before I get my results...hopefully not.

      As I said above, Bruce is doing quite well.  He sleeps in a nice reclining lawn chair in our bedroom until I come to bed or it's midnight then he moves to his recliner in the family room & sleeps there til I get up & go out to the barn then he gets up & moves to our bed for a short time. He has a wedge pillow that he uses there but will probably never be able to sleep in bed all night. He also has some problem with "dumping syndrome" but he's figuring out what he can & cannot eat or when he can & cannot drink fluids.

      His next follow-up is January 6th. If he's worrying he doesn't show it & he doesn't seem to have any problems related to chemo or radiation. His hair has grown in nicely & is a little darker than it was. My hair is also coming along...thickness & length wise but certainly has a mind of it's own.

      I guess I should also mention that I went back to work. It was good to be there & I don't think I had any memory problems while there...but got plenty of rest and it was for only 1 shift. Will not work again until January & then will be working at least 4 nights & possibly 7. Well, will write more when I get my CA 125 results.