iowagirl
Forum Replies Created
-
Posts
-
Melinda A,
Thank you so much for the detailed description of your meeting with John’s surgeon. We are both on track for having the next scan at about the same time….toward the end of Feb. It was at that time that my oncologist finally suggested going to every four months for the rest of the year…(year 2) when I pressed him…and then every 6 months thereafter. So it looks like John and I are set up for the same schedule now.
Thanks also for asking about CT vs MRI. I’ll have to do more thinking about that. With a possible reaction to the CT contrast, …if it happens again, they may not want to do the CT…but do the MRI instead. They really don’t want to do a CT without contrast.
The right side of my liver has grown to compensate for the lost left lobe…..so John and I are in the same place there as well.
Thanks for the clue about hydration and kidney function blood levels. I’m going to try to really push the water a lot. I don’t think I was dehydrated….as I had been drinking quite a bit of water that morning….but in the meantime, it wouldn’t hurt to keep flushing my kidneys anyway the rest of the time.
Yes…peace of mind for the holidays means so much. I was living in dread that something would show up on the scan and ruin everyone’s Christmas…let alone my own. Now, we can move forward….I feel like decorating the outside of the house, which I rarely do….and I’m ready to put up the tree earlier than we’ve ever had it up before in almost 40 years of marriage.
I’m hoping to sing Silent Night and a whole lot of other songs while a friend rings the bell for the Salvation Army. But Silent Night is my favorite….and when I sing it….it’s amazing how many people step forward to put money in the bucket. We even had people stop their cars in the parking lot and run over to put in money. That must be a moving song for a lot of people…and it stirs up a lot of very good memories in them.
Thanks again…..and let’s keep in touch since John and I are on the same path right now.
Julie T.
Golden Girl…I forgot to mention that my husband and I are also “Golden Girls” fans. We watched it every night when we went to bed for the past couple years. BUT, with the advent of the holidays….our Hallmark Channel (which ran Golden Girls reruns) has been running round the clock Christmas movies. At least it’s something “feel good”, but I really miss all the good laughs just before sleep each night. Sure hope they start running Golden Girls again once Christmas is over.
Darla, I , too, have wondered about the statin drugs. I was taking one from 2002 until 2010, and took myself off of it on suspicion that it was causing some bad side effects for me (they went away or almost went away after I discontinued the drug). Nothing will get me to take one again. I haven’t done any recent research to see if any connections have been found to CC, but it certainly seems to be something that should be researched due to the potential liver damage.
Melinda, I am so happy for you…and have followed your story since my own diagnosis. You know….though…it’s okay to be grumpy now and then…NO one is happy, happy, happy ALL the time.
))) It’s just important to recognize the important stuff….and try to throw off the small irritations, isn’t it? But, we’re all normal…or hope to be. I’m so proud to know you through this forum…and maybe some day we’ll meet in person. Until that time…..thank you for continuing to share your “adventures” with CC and giving everyone some hope for a cure.Duke…..one year before diagnosis, I contracted C-Diff, a nasty, bacterial infection of the colon. Despite treatment and confirmed that the infection was gone, I continued to have semi-diarrhea like bowel symptoms. After diagnosis and surgery, I found out about H. Pylori and asked to be tested. Sure enough, I had antibodies that confirmed I had had H. Pylori, but not if it was still in my system. A “poo” test confirmed that it was no longer in my body, Since I had not been treated for H. Pylori, it seems the only way it was removed was by “cutting” it out surgically, which is what I believe happened when they removed the left liver lobe during resection . I haven’t had those symptoms since surgery.
Golden Girl…..well…someone HAS to be aggressive….and sometimes, I think that unless we push a little….the doctors look at the diagnosis of Bile Duct Cancer and write us off.
When I went to be evaluated, I flat out told the doctor that I was told I was operable by the oncologist at home…and that i was there to have surgery and get rid of the tumor. At the end of the day, after I met with a surgeon (that he set up), he simply said, “Well, you got the surgery you wanted.” He wasn’t being catty…..just acknowledging, I think, that I had advocated for myself and got what I knew I needed. He had gone through all of “his” evaluations of my scans and condition….and in the end…the answer was the same as the oncologist back home….but I didn’t want to take any chances that they’d brush me off. I wasn’t leaving without surgery…or a darned good reason why not.
Let us know what the next steps will be when you find out.
So you go ahead….and be aggressive…..and push back if you have to. And keep on praying…because you have to have faith that God is on your side and He has a plan.
Julie T
Thanks Marion…It’s taken me a couple days….but the tearfulness seems to be subsiding….and I’m truly feeling happier. I’m not quite celebrating….but I’ll get there. I know I have a reason to celebrate right now. The holidays will be a bit brighter this year.
))))Julie
Melinda B…..Thank you…..I am already looking forward to the next month with happy anticipation instead of dread. As for the singing of Silent Night…..as soon as I started to sing….I thought to myself, “What WAS I thinking?” I suddenly realized that there was a good chance I’d start crying, but made it through the first verse…and then, to my surprise, I found myself singing the third verse…and I wasn’t sure I could remember all the lyrics. …But…I did. I almost found myself singing another Christmas song, but left before I found myself deep in hot water.
)) I”m so glad I sang Silent Night though.Melinda A….Thank you for the offer to ask some questions for me at your next appointment. I don’t know if I have any “burning” questions….
)))….but I’ll go back over my notes to see what my questions were. I think it mainly had to do with the 3 vs 6 months spans between CT scans….and if the 3 month scans really increased risk a “lot” to warrant spreading it out to 6 months. As you said….your husband’s labs were normal….and so were mine…so there’s not much to be gained from watching those for a sign of recurrence. The other issue I can remember was, why not do an MRI (which eliminates the radiation problem) followed by a CT three months later, followed by an MRI again three months after that…leapfrogging, so to speak? Is there some negative to doing that? In my mind….it would keep the every 6 month schedule for the CT Scan….but give some interior view of what might be going on half way through. Insurance “might’ balk at it…but then again….at a certain point, for me, it is peace of mind…and I’d used savings to pay for an additional test for a year or two. Am I being totally paranoid here?
Also,…thanks for the info on your husband concerning the creatinine/kidney function tests. I wasn’t dehydrated….but then again, I have since discovered that caffeine is tough on the kidneys (they didn’t want me to have any caffeine for 24 hours after the CT scan with contrast) . I “thought” ,mistakenly, that my Coke Zero was also caffeine free, but just discovered it is not. So, I will find something else to quench my thirst for fizzy drinks….and drink more water….and hopefully, get the creatinine back down some. I went back over old blood tests that were done when I went for surgery….and my creatinine at that time was 0.8. That was higher than it used to be…but I’d be very happy to have that back.))Lainy….I really expected to hear bad new…..and am so grateful that I was wrong. I need to listen to you more in the future…but scanxiety really took over this time.
Duke….Blessed indeed…and I know it. And, it isn’t the first time that I have defied the odds. I had a heart attack in 2002 of a type that usually kills before you get to the hospital. I decided then that God had more work for me to do.
Then I beat the odds on blood clots to my lungs from a DVT that hit during my first chemo. I walked around for a week thinking that the shortness of breath was side effects of the chemo. My GP had one of “those talks” with my husband and me while I was still in the hospital, one that she said she hated to do, but I needed to know that I could still die from this.
Back in 1979, I had a large (volleyball ) size tumor that caused a premature birth of our first son (he died two days later). Local doctors only offered me a possible surgery with a surgeon they knew…but it would take 6 months for an appointment. I found out about a surgeon at Mayo who was at the time the best gynecological surgeon in the world, set up an appointment and 6 weeks later, he operated, but first checked for a cancer for which I had symptoms..(negative) and then when the pathology came back, the tumor had undergone gangrene after being twisted and losing its blood supply. We went on to have another son, but if our first son had been born by c-section, which should have happened, he may still have died, and we would never have had our 2nd son, because the ob said that he would have followed the birth by a hysterectomy.
Blessed…you bet….a lot of heartache….misery….but I’ve always come out on the other side and each time I’ve felt that it was because God had more plans for me. Looking back, I can see when and how I was needed and what His plan was. I feel that the blood clots were a knock on the side of the head…God telling me that there’s a plan here….look for it. I just haven’t figured out what it is yet though.
Meanwhile, I forgot to share one thing……today, when my husband took me shopping (I rode in a wheel chair due to a pinched leg nerve) ….we went by a lone man ringing a Salvation Army bell. I noticed no one was putting anything in his bucket. I asked my husband to turn me around and go back….whereupon I asked the man if I could sit beside him and sing a Christmas carol. I sang Silent Night and after a few surprised looks on diners faces around us, I noticed a few smiles appear, and suddenly we had several people come forward and put money into his bucket. It was totally spontaneous, but a wonderful feeling. It isn’t the first time I’ve sung by the Salvation Army bucket, but this year and this time, it had a lot more of “me” in it.
Julie T.
Stephanie,
First, I’m so sorry your mom has lost her war with CC. I want to put my arms around you and hug you until everything gets better for you, if it could. The pain you feel right now, will eventually lessen, but honestly, it will never really go away entirely. There will always be days or events that you will find yourself wishing she could be here with you. But, I promise, you will find strength to get through the days, the weeks and the years, and eventually, look back and smile now and then.
Thank you for posting your mom’s history with CC treatment. I know that there will be many people who access that post in years to come, looking for information
I am headed to Mayo Clinic this afternoon..yes, Thanksgiving Day, for a 3 month consult, blood tests and CT starting at 6:50 Friday morning, and am going to try to carry your mother’s positive spirit with me. You see..she has helped someone already…..I really needed to see your post today and feel your mom’s strength.
Julie t.
Choices…yup….choices are a good thing…usually. Duke…I will be thinking of you standing out there in the cold on Black Friday. I did that once and said never again. But, this is one of those times, that I think I’d rather be standing in line outside in the cold than where I’ll be, getting blood draws and a CT scan at Mayo. Gah….choices,….but neither of these are good. I want choice C….staying in bed and having someone serve me breakfast in bed.
)))Was also thinking back about getting meds approved through insurance. As I remember, when I met with the first oncologist here in town, they made some comments about getting this chemo approved….the GEM/CIS and not sure it would be approved. WHAAAAAT? I was flabberghasted. How could they not approve standard chemo? Well, it was approved, but I would not take no for an answer. Get Dr Alberts involved if the Nexavar doesn’t get approved. I’m sure he’ll deal with the insurance people on your behalf for the drug. I’ve heard of instances where it took several attemps even by the doctor involved to get a drug approved…..explaining to the insurance people just why it needed to be used instead of some other treatment.
Julie T.
Duke, I haven’t had an experience with getting a drug approved by insurance that they don’t normally accept, but from some of the stuff I’ve read, it’s possible that if it is declined, then having your oncologist go to bat for you with the insurance company may get the job done. Maybe if your local oncologist isn’t effective in this, enlisting Dr. Albert may get more results.
Julie T.
Oh Kris…I have missed you. So glad to hear that Mark is doing well….great news. You’re right. of course……must concentrate on the good stuff, which I’m trying to do, but the anxiety just creeps in. Yesterday, it was one week until my appointment at Mayo. That precipitated more anxiety. Fortunately, there are a lot of distractions this week with the holiday coming. We went to Circus du Soleil .last night with friends and there are two Thanksgiving dinners and a brunch between now and when we leave Thanksgiving afternoon for Rochester. In between, I”m doing genealogy research, which requires a lot of concentration, so it’s hard to think about other stuff. Sigh….I guess …oh horrors…I could always clean the house. ACK!
Julie T.
