iowagirl
Forum Replies Created
-
Posts
-
I want to share with you all something my daughter-in-law asked me when I was in the hospital. “Will things ever go back to the way they were?”
I know she knew the answer….but just as I grieve over the loss of my old “normal”, my family is grieving as well. We’ve had our share of medical problems, some very scary and some really horrible, but nothing seemed to throw our family for a loop quite the way my ICC diagnosis and treatments have done. There will be the scans, and more scans, each with the anxiety of the unkonwn answers it will give. Is the cancer back? I had no symptoms , even blood tests were normal, that I had the cancer, so how will I know it’s coming back? I won’t….at least not without those scans. Each time, the fear is going to return….and that is my new normal. But, this cancer will always now be hanging over my head.
So, Will things ever go bacl to the way they were? No, my dear, sweet, DIL, they won’t. ALL of oir lives are forever altered by this cancer diagnosis. There will come a time when I hope we can call this cured….or at least we don’t have to preface every planned family event with, “Depending on how I feel. from the chemo.” Right now, I”m just “getting through what I have to do, ” but someday, I will again feel better, let loose and plan for the future again. That’s MY plan. It may not be cancer’s plan…..but for now….THAT is my plan.
Matt, so glad to hear the good news that all really is going okay and nothing new to worry about. The metamucil may work……I know it’s what the GI doctors all say to do…..to level out the “water” issue in the colon. I had some trouble with the stuff…made me feel very bloated…but that was before surgery and while I still had an active bacterial infection apparently in my liver. Haven’t used it since and haven’t had to either….problem cleared up after surgery. My husband uses Metamucil after having a third of his colon removed (large, benign tumor 3 years ago) and has no problems with bloating from Metamucil. It seems to help him. He also had his gall bladder removed a number of years ago, so doesn’t have that either to help regulate things.
Emad, I’m a CC patient /survivor, as you know, but what you have voiced is what I felt after my dad passed away suddenly from large cell lymphoma in 1984. I was mad…..I was in tears…..why did this happen…and we didn’t have time to do anything before someone figured out what was wrong. He was in the hospital one week in a small county hospital and then air ambulanced to Mayo where they did a biopsy and found the cancer diagnosis…and he died just a couple days later. His kidneys shut down before they could attempt chemo, which probably would have saved his life. I still have a lot of anger toward a family member who delayed his transfer to Mayo and to local doctors who failed to recognize that they were dealing with something beyond their expertise. According to the medical books I read at the time, he had one of several possibie diagnosises and all of them were life threatning and something that the local hospital couldn’t handle, esp considering his condition. The cancer was bad enough, but to this day, the lack of treatment he received…or rather, right treatment, is something that still angers me. Since dad’s cancer was probably the result of exposure to farm chemicals, like DDT, I have wondered over the years, if I would also be a victim of a cancer like dad. I played around the areas where he sprayed and spent a lot of hours with my dad. I don’t know if the CC I have has anything to do with that or not….my guess is not, but It’s in the back of my mind always. I guess you opened up a hole for me today……things I hadn’t thought about for a long time. I know you miss your mom…..I miss my dad….neither of them should have died when they did….there just should have been more that could have been done. It’s interesting that you refer to your mom as your guardian angel…..because that is also how I see my dad as well.
I’m currently in the middle of the third round of Gem/Cis.
The first round had no side effects that I could tell, looking back.
The second round, day one of Gem/Cis combo, I had a dry heave in the morning and night about day 2 and by day 3, I had queasiness all day long. I should have taken the Lorazapam for it, but didn’t. The queasiness lasted until day 6, when I felt pretty much fine. I also had loud ringing in my ears that eventually faded. Hiccuping.
On day 8 , I received just Gem and had little for side effects from that at all, other than some increase in anxiety which caused some shortness of breath. By the end of that week, I was feeling pretty decent. Hair started to thin out. Ringing in ears faded back to its normal level (have always had some ringing in my ears).
The third week, I felt actually pretty good….still very tired, yawned a lot, but overall, I could have gone somewhere as long as I could reserve my strength and not overdo it.
Now, I’m into the third round and the side effects are hitting me just the same as the 2nd round. Day three brought the queasiness, but this time I used Lorazapam and felt much better most of the time. Sometimes I still am aware that something isn’t right in my stomach though. The ringing came back loudly again. Hair is still thinning out every day, but not in clumps. On Wednesday, i will have day 8 of round 3.
For me, it seems so far that what happened one time is happening another round. However, that could all get thrown out the window with the next round of chemo. My onc here said though, that whatever I experienced the first couple rounds, to pretty much expect that is what it will be like the rest of the way through. As you can read in the responses you’ve gotten, everyone experiences this differently to some degree. The only thing certain for us is uncertainty it seems.
Julie T.
Everyone, Thanks for the response to my post about the chemo port and side effects.
Lainy, I’ll see what I can do about finding Brioske. It’s not that the Hiccups or burps are terrible….just kind of annoying and don’t like doing them in a crowd all the time…esp the burps.
BTW….my new oncologist mentioned that there is a ginger gum that can be chewed for the queasiness and she gave me a couple pieces to try. It did work pretty well. However, I tend to be a drooler…..(no jokes please) ….so maybe it isn’t the “prettiest” solution for me. The Quease Ease ginger oil inhaler also work pretty well, but you have to keep sniffing it. I did use Lorazapam today ….twice and will use it again shortly before bed. It seemed to work the best over the day…..and only slept when I intended to sleep. I am pretty tired tonight again though, but had two social events tonight….so not surprised.
Kris….Yeah….I hope to God that I don’t have to have the port replaced again after I take it out….because you and I both know what that means. But, if I do…..sigh….the surgeon and I are going to have a “Jesus come to meeting” type understanding before I let him cut into my chest about where and how he places it. This has been just crazy awful port access and has added to the misery and pain…..totally not necessary.
Yes, I WILL get through this…….I may scream…I may cry….I may grit my teeth, but I won’t give up and will get through whatever I have to get through. I have no intention on giving up….but I also know that I tend to wear my heart on my sleeve….so tears come easily….and though I’m generally tougher regarding pain than the average person, my toughness has taken a huge hit with anxiety quickly following up from behind. I WILL GET THROUGH THIS!!!!
Julie T.
Larissa,
I can’t write much tonight because I don’t have a lot of experience with this yet, and I’m personally dealing with feeling very crappy after getting chemo this morning, but I wanted to also throw in my 2 cents worth to let you know that you will always be welcomed here and yes, this is like a family. There are differing attitudes and theories and this is a great place to find them. No one judges…just good questions and hopefully good answers or at least good options. Hugs from Iowa
Julie T.
What wonderful news…..and it keeps on coming two years out from surgery. Congratulations and wishes for continued good success. Every time I hear a story like yours, it helps me get through another day…hoping I follow in your footsteps. We have different types of bile duct cancer, but success against this monster is SUCCESS!!!.
So please….keep posting here….to give others encouragement.
Julie T.
IOwa girlKris….I am in tears, I’m so happy for you and Mark and your son. This has been a WONDERFUL day all around. Hugs, hugs, hugs! And tell Mark, we’re all willing him to eat.
))))Julie T.
Matt…..no experience with what you have going on…but just wanted to let you know that I’m thinking about you. I know you’re worried…I would be too…right there with you on that. You will get an answer and you will deal with it. Keep us posted.
Julie T.
Fantastic…..and he’s doing well…..doubly fantastic!!!!! It’s so good to hear good news for someone.
Julie T
Duke…..the one thing my Mayo onc did say to me….was that he was glad to see how informed I was about CC, treatment and my own particular situation. In his approximate words, “You can make an informed decision about your treatment.” I think the oncs out there , at least at the big medical/cancer centers, would mostly welcome a website like the CC foundation site if they actually knew about it and understood what it is. I’ve been to a couple other sites that talk a lot about bogus cures and I suppose that they make it more difficult for oncs to take “us” more seriously…we get lumped all together. At least that what I would suspect.
Must also mention that when I talked last with my Mayo oncologist, I was telling him about my theory of H. Pylori being a significant factor in my getting ICC and in the process, I mentioned the Mayo Registry and CC.org. He said that another patient had told him about CC.org also…but then wasn’t sure…maybe it was I who had told him.
I sent him a link. Also, I was very disturbed when a cancer nutritionist at my new chemo center was negative about CC.org when I mentioned it to her (was going to tell her about the nutrition section). She was warning me about finding information on “the Web.” I can’t remember right now what I told her, but I think it was something about CC.org foundation funding studies and meetings for oncologists. I haven’t seen her since, but want to copy off something to take in to be given to her so she can see just what CC.org foundation really is….and that not EVERYthing on the web is bogus information. Sigh.
Found this site by using google searches….looking for the “positive” news…and then just anything I could gobble up for information.
Lainy,
Well, it sounds like you could start your own pharmacy….and maybe write a book about the colitis to boot. That’s a LOT of meds, but if they would do the trick.,…so be it, right?!!!!
Hope that once the MRI is out of the way…..and everything is clear (it WILL be clear), then you can let loose and enjoy life as much as possible over the summer…as much as the colitis will let you. Hoping that new drug may be your answer.
MDs as entertainment….Hmm….that sounds like that could be a tv show….no wait…I think that’s already being done. Oh well…..there goes your chance for your 15 minutes of fame.
Julie T.
