iowagirl
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Porter, my hubby had a large mass found in his colon during a routine colonoscopy about 3 years ago and after surgery his surgeon told him to take a baby aspirin once a day to try to avoid this happening again. Note: The surgeon first told me right after the colonoscopy, that it was cancer…and believe me, when I saw the pictures, I had no doubt that was what it was. The pathologist spent about 9 days going over the slides…making new ones….kept looking for the cancer…but couldn’t find it….and finally after requesting the pictures/video of the colonoscopy and looking at the tumor every which way but Sunday, he finally said, “There is no cancer.” Wow…isn’t that something we’d ALL like to hear? That said…he still had to have the same surgery as it would be for cancer….lost 1/3rd of his colon. He is at high risk of developing more of these very fast growing tumors(probably about 2 years from nothing to blocking his colon…forget what you’ve heard about 10 years..or even 5…it isn’t often enough). So, the aspirin seems to be a small deal in the great scheme of things. Still, he hesitated for a while about taking it because he was concerned about brain bleed strokes.
Just before my tumor was found, I had a spontaneous low blood sugar event…BG was 43. And, it took a heck of a lot of OJ and cookies to bring it up…over the course of 3 hours. After we found the tumor, a few days later, I did some research and discovered that a spontaneous low sugar event was a sign of liver cancer.
On Dec 31, 2013, my A1C was 7.7, and by the night before I had surgery on Feb 27th, it was 6.9. I had not eaten any differently than usual, but I was getting numbers into the 80s and 90s consistently on less insulin than I previously used. I’m quite sure that if we did an A1C test right now, it would be back up again some. When my incision healing stalled and got infected, the numbers went up again for a number of weeks until that was under control.
After my surgery where half the left lobe of liver was removed, along with the tumor/s, my BG acted more normally again…at least normally for a diabetic on insulin. We were able to get the BG easily regulated though with insulin….where it should be…..unlike it had been most of the previous year….when I had been sick almost constantly with bronchial and lung infections.
So yes, CC or any liver cancer, does affect BG and it would be downward…at least in my experience.
Julie T.
Porter….I’d be worrying too….needlessly perhaps….but I’d be questioning and worrying all the same. That said….glad to hear that you are feeling less anxious and are moving forward. I’m right behind you….doing the Gem/cis…restarting May 21st. I’ll probably be posting similar anxiety laden posts.
Huge,
Iowa Girl
Julie T.Big hugs from me, Lainy. Rest and feel better soon. We know you’ll be on here at least lurking….and reading. Take care of yourself first.
Iowa Girl
Mike…first of all, “Welcome.” I’m fairly new to the boards also, diagnosed in late Feb, followed by surgery and now adjuvant chemo. Second, I immediately liked your name….is my son’s name…a very good name.
))So, I 100% agree with Lainy…..no spreading of the cancer is good news and gives some hope.
Also, unless you’re being treated at a large medical center that regularly sees patients with this cancer, I highly suggest you get more opinions….and often you will need to get several. I was fortunate enough to be deemed operable from the beginning as my ICC was found in late stage 2, but there are people on these boards who have had chemo first that shrunk their tumors enough to have surgery. You have to find the right oncologist who will be aggressive, IMO. CC is an aggressive cancer…and needs to have things thrown at it aggressively. Unfortunately, to find those special oncologists means that for most of us, we’ll have to travel away from home for the best treatment until we find one that doesn’t say no…or at least has a positive plan. People often think the big medical centers are impersonal, but I’ve been to Mayo two different times in my life and it was the most personalized and comprehensive medicine I’ve ever experienced. I’m quite sure that the others are similar. Melinda Bachini’s story is nothing short of amazing and if you have a chance to pursue that, and want to do it, I say go for it. I’ve been watching her posts and blog for a while now and it sure sounds promising. If I were in her position….I’d go for it too. Many on this board have a lot more experience and knowledge than I do and if you get to the point that you want names of oncologists or surgeons in big medical centers, they’ll be quick to answer your questions with good, usable information. You’ve come to the right place.
Iowa Girl
Julie T.David…first of all…welcome…and second…you have one of my favorite guy names.
Please know that your presence on these forums is so very appreciated by all of us. I am very certain you are going to make a great impact on a lot of lives and in the process, God will bless you ten-fold.Iowa Girl…..3 month survivor of ICC
As of tonight (Sat) , I am home. OMG, it felt so good to feel the air on my face when we got outside the hospital doors. My release was delayed until 6 p.m. because my GP had set up a 2nd opinion/consult with an oncologist through Hall-Perrine Cancer Center (this gal was the onc on call today). She met with us most of 2 hours….wanted the story from the beginning. I expressed my concerns….and then she told us how they do chemo/treatment ….and what she could offer. She answered my questions and without going into details, I was comfortable with her to decide that we’d do the chemo with her locally instead of traveling the 3 hours to Mayo each time. My Mayo doctor was really discouraging us from doing that, mainly for comfort reasons, the fact is that I’ve now had the blood clots and with diabetes, and other issues, the potential is for more problems which would be better handled immediately and not in the middle of no-where on the road (nothing much between us and Mayo). Another considerationfor me, is that while my husband is more than willing to make the drive up to Mayo each time and stay when needed, he’s already under a great deal of stress at work (unrelated to my illness…he can take off whenever he needs to) and I’m seriously concerned for his health. He’s worked stressed to the point of talking retirement and he’s very worried about me. I told him that WE were in this together……it wasn’t just about ME. HE has to stay well…..to get us through this mess…..and I can’t do this knowing I was compromising his health as well. We’ve been certain at one minute that we were staying here…then to Mayo for chemo instead…and back again, so many times, it feels like whiplash!!! I need some stability….but have to feel safe. I feel comfortable enough with this new oncologist …that she is going to watch over me better, to push forward here locally…..so that is what we’re doing. I am quite aware that I may still have some difficulties, but if she (and associates) follow through as promised, then they should get me through them. The plan is to use this next week as my week “off” as it would have been ….(missed day 8 chemo last Tuesday because of the blood clots) and ignore the fact that day 8 infusion was missed. We will forge ahead with day 1 of the 2nd round May 21st. The incision healing that had gone backward under the “care” of the hospital wound specialist, has now improved after two days of us taking back care on our own (while in the hospital). I’ve gotten the dead stuff removed again and Allen (hubby) is back to packing the incision with the silver cloth stuff. We’re taking pictures of the wound each dressing change…which we could then show to my GP…and even the new oncologist….which has helped a lot. After we got home tonight, our son showed up with one of our favorite meals and then after sitting in my recliner…I fell asleep as did my hubby. We’re both exhausted. Tomorrow….Mother’s Day…I’m going to go out to the green house center to buy my outdoor flowers to have the kids plant them (their labor is my delayed birthday gift). Life has to get back to normal…as much as possible as soon as possible. Thank you again everyone. I’m tired…and going to bed.
Iowa Girl
To my CC Foundation Family,
I am currently on day 5 of Heparin therapy following the diagnosis on MOnday of a blood clot in my left leg and a spray of small clots in both lungs. Today, my INR blood test (for the Coumadin) was at 2, which is the bottom of the 2-3 range it needs to be for me to go home. My doctor tentatively told me this morning, that barring something “awful” happening (doubtful it will) that I will be dismissed tomorrow to go home on just the coumadin therapy. I find myself having a harder time breathing when I walk….but I assume it is because my lungs were affected by the small blood clots. But, I get in four walks a day….a couple at least 4 rounds of 500 feet each (2000 ft).
I had an IV in the crook of my arm for the first two days….which was always sending off an alarm…and very uncomfortable. So, for a day, we discussed using the power port for my Heparin IV. It’s still fairly new…implanted on April 29th and I had just finally been able to turn my head without discomfort. AFter I finally said for them to go ahead and access the port…I asked for the anesthetic cream to numb the area….which had to be ordered….with a rush (A rush in the hospital means that maybe they’ll get it in an hour). It came in 45 min…leaving enough time for the Pikk team to still insert the port before they left for the night. When the Pikk team arrived, they discovered that the nurse had applied the anesthetic cream to the incision line…not the port area….so there went the numbing. Then the Pikk nurse couldn’t find the 3 dots…and commented that I had an old style port without them. (No, I do not have an old style….this definitely HAS the raised dots). She finally decided to put in the needle….but it didn’t go any further than the layer of skin. Then…after a lot of pushing and prodding to try to find the three dots again…she gave up and tried it again anyway…and it did finally go in. (Hurt ) They covered it…finished the procedure with the Tegaderm bandage….which was the cause of burning for the next 24 hours….I am sensitive to the adhesive. They finally changed to a different bandage the next day….and that finally ended the pain I had from the burning of the adhesive.
Tonight, I managed to get the tubing of the port IV tangled under the rollers of the IV pole while standing up to hug someone…and pulled hard on the port IV insertion area. Now, we are watching to make sure it isn’t leaking the fluid into my tissue. Oh LORD…I hope I didn’t dislodge that port. The Pikk team member checked it before leaving for the night and thought it looked okay…that the needle was still in place….but it needed to be watched.
Since I only had one infusion of the first round of chemo, my Mayo oncologist has mentioned that I will probably need to just start over. I’m bummed!!!
Still weighing the options on where to do chemo ….not going back to the local oncologist where I had the first chemo. My choice is to either have it done here in town at a different chemo /cancer center with my Mayo oncologist running the show from Mayo at a distance…or us driving back and forth to Mayo for chemo (3 hours one way). My Mayo oncologist was discouraging me from doing the later when I spoke to him for a few moments this afternoon. He was concerned for my comfort….but frankly, I”m concerned for my life after this blood clot event….where the oncologist had several chances to catch the clots far earlier….but he misdiagnosed one time…and then he didn’t come to the chemo room (he was only 15 feet away) when I had trouble with breathing and chest tightness. (We think that is when one blood clot moved into my lungs). Then, he failed to come out at the end of the chemo to check on me, so I left there believing what I was feeling must be normal side effects of the chemo. I’m soooo mad…and now scared all over again.
I have NO idea what to do about where to have the chemo. Someone suggested talking to a hospital social worker…who then gave me the name of a cancer nurse navigator….but she did not call me back today. It makes me crazy!!!
Iowa Girl
Julie T.Kevin, You and Lori are in my prayers. I wish you didn’t have a reason to be here on this site….none of wants there to be a reason for having a foundation website. But, there things are what they are. I hope you find some comfort and information here to help you through this time. You two have been through so much together …it’s obvious how much you care for and love Lori.
Julie T
Iowa GirlI was diagnosed with CUP….tumor in my liver…but all tests came back negative for anything else and only the liver tumor showed up on the PET scan. Still, I was diagnosed with CUP even going into surgery at Mayo when the surgeon stated that she knew what this was….she’d seen it before…bile duct cancer. The pathology of the tumor from surgery yielded the final diagnosis. I was officially bile duct cancer…not CUP.
Patty, I KNEW what those first three words were going to be ….I asked myself, “What would I say?” And, there was no other choice than, “I am alive.” Your speech was incredible and an inspiration. I am lying here in a hospital bed ….recovering from a shower of blood clots in my lungs and another in my leg. I, too, have intrahepatic CC, except I was fortunate enough to have surgery 9 weeks ago to remove a section of my liver with the main tumor and one tiny one and be diagnosed at T2b. If the cancer didn’t scare me enough, the blood clots came close to finishing the job. But, as you said, “I AM ALIVE!” Chemo will restart eventually, I will trust in God that this is his plan…to kill off microscopic cancer cells we don’t know that are actually there, with chemo that hasn’t been studied to work in this case. Twelve years ago, at the age of 49, I survived a type of heart attack, which usually kills its victims. At the time, I came to the conclusion that God wasn’t finished with me yet….that he had a plan and I still had work to do before leaving this earth. I just needed a “not so gentle reminder.” HE was right, of course. My own son needed me. Now, HE is telling me again, that I have something yet to do, and I’ve asked Him to show me what’s to do this time. Right now, it seems he’s busy getting my attention. Well, Lord, you’ve got it. Now, let’s get on with living and let me execute your plan. Thank you, Patty, for everything you do to raise awareness of CC and for sharing your story in the way you do. You give all of us hope and remind us of what is important. You give us renewed hope.
Julie T.
