rose-may
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I think it’s holy moments like those that make death tolerable for us, and even beautiful in a way.
Thank you for sharing that experience. You are so fortunate to be near the ocean, I miss it terribly…..Hi Terry;
I appreciated your message very much. Today I let myself get a little worked up over things. I had this great plan to get the stent put in, get my liver draining, relieve the sypmtoms, eat the most nourishing foods, get my health up to a high degree, get the surgery and presto! go on with my life.
At some point today I came to the realization that I am not in control of this thing….as you said, I didn’t cause, I can’t change it and I certainly can’t control it. It reminded me to turn it over to God and walk by faith and not by fear. Somehow I have to trust that all things are working together for the good. And yea though I walk through the valley of the shadow of death I will fear no evil. Such comforting words.
I have had no real follow-up care since they placed the stent two weeks ago other than monitoring my blood via my local clinic. I go in tomorrow for a consultation and should get a lot more info about what kind of treatment plan they have in mind under the circumstances. All I know is that this itching is crazy-making, it’s been going on for over two months with no relief of symptoms and I just have to have some kind of intervention soon. I feel like I can handle pain more than I can handle this cursed itching.
Interesting tidbit: Did you know that many monks wear horsehair shirts under their robes to purposefully cause itching and discomfort as an act of penance? Some even sleep in them. I’m sure God must shake His head in wonder……
Hi there, simpstw….
I guess I am where you were a year ago, newly diagnosed, attempted stent that did not work but did trigger acute pancreatitis attack. They think my liver is resectable but with my bilirubin still up and downward spiral of health from this ongoing blockage I’m not too optimistic about surgery anytime soon.
Am concerned they will schedule it for down the road like yours was and meanwhile the tumor has time to grow as might the other suspect spots on pancreas, small intestine, and liver. they could very well open me up and tell me its unresectable.
Am encouraged by your success. I wish you the very best in keeping this beast on a short leash………
Interesting how many people there are from Wisconsin on this board….what’s up with that?
I am supposedly scheduled for surgery on March 16 but that was contingent on getting my bilirubin levels down and being in good health to undergo a major surgery. Meanwhile I am shedding pounds, not absorbing nutrients from my food, have made very little progress in getting bilirubin levels down and feeling worse by the day, so don’t know what;s going to happen.
I had the stent placed about 2 weeks ago. They are hoping to do surgery in mid-March and don’t seem to want to go back in to replace the stent or attempt an external stent for fear of creating complications that set the operation back. I don’t have another appt until Tuesday and it seems I’m just stuck coping with this for now.
Is Sarna a cream or a drug?
By the way, I really enjoy your weblog……..Its helpful to have someone else who walks by faith to share the journey with…even if it’s just online.
Just the fact that you are concerned about your son’s feelings and your outbursts around him tell me that you care very deeply about him. A mother that was truly abusive or negligent would not even care, feel guilty about it or do the kind of soul-searching that you are doing to remedy it.
I am a single mom victim of cc with a 9 year old daughter at home. I am guilty of outbursts lately becuase I just cannot tolerate sassy or disrespectful behaviour from her, and I am not able to be as authoritative as I usually am to keep things in check. I’ve let a lot of things go lately and am pretty self-absorbed with my illness.
In one sense, it is very honest to have a negative reaction to challenging behaviour, kids just have to learn that the world is not going to be very sympathetic to disrespectful behavior.
On the other hand we have to constantly screen ourselves to determine if our responses are appropriate or over the top.
When I have an outburst that is clearly out of proportion to the situation, I make it a point to apologize to my daughter as soon as possible, and let her know that I was wrong to react that way, that I feel terrible about it, and that I will try harder next time to be more patient.
My partner had a pretty rough day today. His granddaughter fell into a firepit with live coals and burned herself badly and is in the hospital at least overnight tonight. He is driving down to see her………and then on top of that, he discovered that his oldest daughter has ovarian cancer and will be going into surgery just two days after mine……..he’s pretty overwhelmed, my cc is plenty to deal with on it’s own, now all this too. Ai yi yi!
Not sure waht Rubenesque means but I am 45 and newly diagnosed and fairly slender for my age. I have had hormonal problems in the past, very prone to miscarriages and experience monthly migraines that coincide with my cycle. I tend to be a Type A personality which may have more to do with it though I’d do anything to learn how to be a Type B if that would cure me of this thing.
magic wrote:This post made me feel rather sad.I found the situation of being someones lover and virtually overnight their carer very difficult and so sad.Having very gentle hugs and more kisses is all I can offer
JanetThis is what my partner is experiencing. He wanted someone to build a life with and suddenly the dynamic of our relationship has changed overnight and it is beginning to take a toll on him, made so much worse by the fact that our nights are so awkward.
He’s been so devoted to helping me through all these hospital trips and always being available in case something goes wrong…….I have had to insist that he take a break and go off and do something else. But now these last couple of days he’s gotten into a funk and has taken a much longer break to sort himself out.
I do try to be extra affectionate but I’m afraid it isn’t going to be enough. The cc has changed my whole life and it affects everyone who loves me. There’s so many more challenges to this beast than just the physical discomfort and coming to terms with our mortality.
Gosh Tess, those figures make my 1000 seem pretty paltry. Yikes, I hope you are all able to cope with the new results, I doubt it gets any easier……
Update
We made a whole bunch of phone calls today trying to get some answers. My biggest concern is whether the stent is working becuase that effects the status of an impending resection, plus is the main channel for symptom relief at this time.
We talked to the surgeon’s PA who informed us they had a surgery scheduled March 16, first I’d heard of it. Why didn’t they tell me about it?
Then the PA recommended me to a psychologist on the cancer ward. Is that standard? I feel like I;ve been handling this pretty darned well for the enormity of the situation and the suffering I am enduring. So I guess I go to see the psych in the morning and hopefully she can at least advocate for me or put in a report that suggests I’m reasonable and rational and not hysterical.
The GI specialist claims the stent is working even though the bilirubin levels are going down incremently….like 0.6 in three days.
I called my family doctor and she got me right in and spent 2 hours working on my situation, which felt so good to get some attention from someone that already knows me and doesn’t think I’m crazy or hysterical. She had bloodwork drawn and I’ve come down .2 again.
At this rate it will take 80 days to clear 8 points worth of bilirubin out of my system.
So now it’s all about waiting until Tuesday March 10 for consultation. On my appointment sheet the surgeon has me scheduled for a 5 minute appointment. Then another with (I think) a team of providers for 30 minutes. Hopefully I can get some answers there.
Meanwhile it’s pain management and keeping my attitude up.
We found out this morning that the surgeon is away at a conference for a week.
Honestly I am not even sure who my doctor is. I think its the surgeon.
I have this feeling like I’m being posioned by the bile and maybe that’s simply not true. I was reading that our liver produces a quart of bile a day. This means my body has had to find another way to deal with gallons and gallons of this stuff. How can this be?
Thanks so much for your caring responses and to know I’m not alone in this CC hell.
Venting……
The doctor never called back with a treatment plan for the stent problem. I am so frustrated with not knowing what’s going to happen. I feel like I’m being poisoned by my congested liver and jaundice which has gone on for over a month now with no relief and can’t get the help I need..
They always ask if I’m getting a fever or chills as if that’s what it will take to get some action. I’d like to prevent an infection by getting this bile moving asap.
Nights are the worst. I simply cannot find a comfortable position to lay in or sit for that matter. I have back pain, side pain, stomach heartburn, and of course the horrible itching which is getting more intense by the day. Tonight it feels like I had a run-in with that old pink fiberglass insulation and I cannot stand to have anything touch my skin.
Have been taking the oxycodon to try to help me sleep, but to no avail. The nights are soooooo long.
How long is reasonable to wait for a treatment plan? They have me scheduled for March 10 for a consult but I don’t see how I can possibly wait that long with deteriorating condition.
I grew up by the ocean and rarely get to see it now that I live in the Midwest. I can only imagine how wonderful it would be to float in the waters, especially if they are the right temperature. Almost like being in the womb again and surely a deeply healing experience. I have to settle for my bathtub for now, which really does help with the itching and the abdominal discomfort.
Does anyone ever discuss the emotional component to cancer? I have heard that our health is not just influenced by the physical plane but by mental, emotional and spiritual influences as well.
I have heard that cancer is “anger turned inward” and it would seem that this would be especially so in the liver which in oriental medicine is considered to be the “seat of anger”. Unexpressed rage has to manifest itself somewhere and possibly stores itself in tumors. Stressful events can stimulate the growth of the cancer cells.
A little on the metaphsycial side, but interesting to consider.
