iowagirl
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Crissie…my heart goes out to you. You’ve been in fighting mode and now to swtich gears, it’s just got to be incredibly difficult. You dad’s gift to you is to guide you in what he wants and to arrange things for the least stress for you. Accept his gift and spend as much time with him as you can….for him and for you. And, as KrisV said, find someone to talk to who understands the process of grieving and dying. You need someone trained to help you work and live through the emotions. If you need to let go of some emotions…and don’t have an outlet, you can always come here. Hugs and prayers for you and your dad.
Julie T.
Well, I’m having a port installed in my chest on this Friday…and starting chemo soon after…probably early next week, though I haven’t been told yet. The local oncologist wants to move forward since this is week 8 post surgery and for the chemo to have a chance to kill off any stray cells, he said we need to start between 6 and 8 weeks post surgery (which I knew and was getting nervous with the delay due to incisions not healing completely).
I had considered going back to Mayo to have the port installed…mainly because of IV issues here locally…they just aren’t good at putting them in for me. But, I’ve agreed to go to the oncologist’s office first on Friday to have their chemo person put in the IV and then I will go down to the hospital to have the port done.
No, the incisions are not healed yet. But, I have done some research on the web and it seems that chemo is done under these conditions…first things first….or rather…the more important things first. And, the wound nurse I’m in contact with says that the incisions are doing better…one, a lap hole, looks ready for the 2nd type of bandaging that has to stay dry and the longer incision has more red now and she thinks that it may start healing. She said that if we do chemo, she thinks that these incisions will now continue to heal, but much slower. What a pain in the rear. In the great scheme of things…this is a minor inconvenience, but irritating. Nonetheless, I am either continuing with this wound nurse specialist, or finding an MD who specializes in wound care to have someone watching these incisions really closely while I’m on chemo. I’m not much of a gambler….don’t like taking chances. I should have been under the care of a wound specialist a month ago when I started having problems, but kept being told it was normal healing.
As for the tape issues I was having…..I’m apparently allergic to a lot of the adhesives on tape and bandaids…AND…..my skin is fairly delicate and the sticking power of the bandages I’ve tried thus far, seem to pull off a thin layer of my skin when I take off the bandages, which then takes up to a week to heal…maybe longer….with intense burning and itching as it heals. The first of the adhesive burns are just peeling off now. I’m rubbing Udder Balm into them to keep them hydrated.
Okay…that’s my rant for tonight.Julie T
Lola, Great news that your mom is through surgery, but there is some good news there….in that it is an early stage, which usually isn’t the case. Hopefully, radiation will help to kill off the rest. I second what Lainy said about pain control meds. A phone call to the doctor/surgeon by a family member wouldn’t hurt. I sure would do it.
I’m so glad you were there with your mom though…..it was a good decision.
Julie T.
Kris, Congratulations on the year milestone. I hope that the increase in Lasix will help the edema in your left leg. You are one of my inspirations on this website…..and I’m so glad to have met you at least on line. You’ve helped me in more ways than you could ever know.
Julie T.
Beautiful tribute to your mom. You are the example of everything she did right….a wonderful daughter. Prayers and sympathies to you and your family.
Julie T.
Beautiful tribute to your mom. You are the example of everything she did right….a wonderful daughter. Prayers and sympathies to you and your family.
Julie T.
Patty …what awesome news. You are an inspiration to everyone, and especially to me. I’m also an ICC patient, ,just starting, except I had surgery to remove half of my left liver node….now waiting to start chemo in case there are any small cells still floating about …hoping the chemo might kill them off. Please post more often. We need to hear your story.
Julie T.
Update on the incision healing problems: Last Friday, I saw a wound specialist nurse who assessed the two incisions from liver surgery tell me that the healing had stalled, due to some infection still lingering, dead tissue and dried drainage. So, she changed the bandages with a silver impregnated bandage cloth. We were to change it daily, wet it with 0.9% saline solution and cover it, after first washing them very well with a wash cloth to remove the dead tissue. This will apparently speed up healing. Once we have achieved healthy tissue in the wound again, then we are to swtich to a different dressing which is to be kept dry and changed every third day. To keep it dry during a shower, the nurse suggested using, “Press and Seal,” food wrap on my abdomen to keep out the water. Go figure that one.
My GP had seen this incision, though never without the wicking tape. My surgeon saw it, cut away dead tissue and said it would heal in a week to week and a half. That was never going to happen…..and probably would have taken months to heal otherwise. I don’t have that kind of time if I am to start chemo as close to the 6-8 weeks post op as possible. On Friday, I was 7 weeks post op.
So, even for far less circumstances as CC, it still pays to get another opinion or two. Head’s up to anyone with post surgical incisions that don’t seem to be closing and healing as you’d expect them to do.
Julie T.
Chrisna,
I just wanted to say hello and I understand the feelings you are going through right now. I’m a cc patient myself and recently diagnosed. After surgery at Mayo to remove a little over half of my left liver node, I’m still waiting on two of the laproscopic incisions to heal so that I can start chemo. I chose to do chemo even with a “huge” 2.2 cm clean margin, no evidence of mets, 6 out of 6 clean hilar lymph nodes and no nural or venous invasion found at pathology. (This cancer can spread not only through lymph nodes but also along nerve pathways and blood pathways). Why, when there’s no evidence at this time, that chemo does anything to keep the cancer from returning after curative intent surgery? My Mayo oncologist said very simply, without me asking, that if it were he in my place, he’d do the chemo and if it was his mother or sister, he’d be urging them to do it also. He has no skin in the game…..that is….he is not going to be the oncologist administering the chemo (home oncologist will do that), so this was his honest opinion. That, along with the 50% odds he gave us for the CC to come back, the decision was made. It wasn’t an easy decision…but now that I’ve made it, I want to get on with it. I don’t want this stuff to come back and then say, “Why didn’t I do chemo?” I’ve seen odds of this coming back ranging from 50% to 75% (the latter being the statistic shown more for intrahepatic, which is the kind I have), but my oncologist said 50%, so since I like the better number I’m going with it.
As to the statistics concerning surgery. I am a diabetic and obese (I hate that word), so along with the usual numbers about morbidity, etc, the weight and diabetes were factored in also. Still, I was told that the percentages for complications for each of the issues concerning surgery and recovery were about 3-5% at worst, nothing like the numbers you were told. But, every surgery is different. Mine was pretty straight forward. Still, I would echo the advice of others on this discussion board…..get a 2nd and 3rd, or even more opinions.
As to chemo before having surgery. My surgeon mentioned that they were starting to look at doing chemo before surgery more often, but she didn’t feel that I needed to do that and she was prepared to go ahead the next day with surgery if I was. If I WAS?…..oh goodness, I told her that was why I was THERE. If my tumor had been still larger, (it was 5.3 cm or so), then maybe she would have said chemo first, because I’ve read a lot of posts here about people doing chemo to try to shrink the tumor or tumor load before surgery, in some cases, to even make the surgery possible.
Coming to the CC Foundation was the best thing I could have done for myself. At first, I just gleaned the data/facts, …..the stories often made me cry…the statistics made me cry…..when someone said something nice it made me cry. Okay….yes, I do wear my heart on my sleeve and have been known to cry even at commercials. But, when I finally posted my own story and had some responses, I was made welcome and realized that there were people who “get it” and when they tell you that what you’re feeling is something most everyone here has felt at one time or another, it gives you something to cling to. Hang in there…..and keep pushing until you get some answers that make sense.
Julie T.
Kris….what a great moment to celebrate with your Mark. I’m sure you’ll put some weight back on him soon enough.
Enjoy this time to the max.Julie T.
Dukenuken, Congratulations on the really good scan report. I am reading through your old posts for inspiration. Thank you and God bless.
Julie T.
Crissie, My oncologist at Maro (Rochester, MN) is Dr. Domingo. He is very nice, straightforward, and honest about my situation. He realizes that I have researched a lot about this disease I have and is careful to ask me what I know about a certain topic I think to see how deep he needs to get into explanation. That’s my guess anyway. He’s very straightforward, and realistic, doesn’t sugarcoat, but seems to be very caring at the same time,
Dr. Domingo is an oncology fellow and for my first visit, he was overseen by Dr. Jatay (not actual spelling)
My surgeon was Dr. Kaye Reid Lombardo, who only does pancreas and liver surgeries and specializes in laproscopic surgery whenever possible. She did mine as laproscopic even though a lot of doctors would have done open abdominal surgery. Dr. Lombardo stayed a bit more “removed” emotionally, but I appreciate her expertise. She is highly skilled and dedicated to helping people, IMO. In my surgeon, I want a straight shooter who is confident they can do what they say they are going to do. I don’t need a hand holder, though it might help emotionally on my part. That said, I just want a really great surgeon if I’m going to be operated on. At my 6 week post op check, I went to give her a hug and she accepted it gladly. I thanked her foir what she did for me and I’ll always be grateful she took the risk to operate in my case. I’m overweight (okay, obese) and have type 1.5 diabetes (on insulin), so immediately, I had two surgical risks. I came through with none of the usual complications, except for the dissolvable stitches dissoving before two of the incisions were completely healed. So, now I am dealing with that before I can start chemo. As a side note,my husband had some post op issues with his laproscopic incisions after a gall bladder surgery and he’s relatively skinny, so they can happen to anybody, I guess.
Dukenuken,
While I haven’t been part of this group of CC survivors very long (I already consider myself a survivor, though it’s not been long since my surgery), I have already thought about frequent testing of some kind….even if it were a simple, abdominal ultrasound of the liver to look for any new growths (assuming they would show up). I’m concerned about having so many CT scans because of the cumulative radiation, but in the grand scheme of things and life with CC, I can see the need. I probably am going to push for an MRI inbetween CT scans, just for my own sanity, depending on how anxious I begin to feel. My blood tests never showed anything abnormal, right up to surgery Feb 28th, so it’s doubtful that blood tests will be any indicator of a returned disease state in my case. Even the CA 19-9 was smack in the middle of normal. My only symptom was a sudden drop in blood sugar (43) that I later found out was a sign of liver cancer. However, that didn’t happen until a week before the 4.3 cm tumor was found. I weigh the anxiety I already felt before my 6 week post op scan, worrying about whether the scan would show a new tumor., with the relief that came after the scan in finding no new tumors. I think I could live with CT scans every 3 months, which would give a length of time when I might be able to have some less anxiety prone time, not that CC will probably ever let me be free of anxiety.
I know that I”ll never be free from worry about this cancer, but knowing how aggressive it can be is enough to convince me that being ultra watchful for recurrence may be a good idea. It certainly has “my” attention with a return rate for ICC of upwards of 80%.
