As soon as I saw the title I knew this was going to be your update. And as much as I have pestered you, I had trouble opening the thread.
I don't know that I can say anything that will make you feel better. I can only let you know that I understand the feeling that the "tiger is out of the kitchen" and how I liken it to first finding out my original diagnosis. The what if's and the how long's and the ups and downs and the speculations about how bad will it be. I only had a brush with pneumonia and I was spinning so wildly I couldn't think, so I can only imagine. I'm hoping once you have the biopsy behind you and some sort of a plan you will be able to put thoughts together in a way that make you feel some sense of control again.
I do have experience with liver biopsies. They are more frightening than they are difficult. They got me very relaxed in a quiet, even lowly lit procedure room. The feeling of anesthesia washing over your side (and inside) is actually welcome if you have been experiencing the side, back and shoulder pain you described. Those areas disappear into a wonderful numbness.
They used imaging to guide the biopsy punch. And it is a punch. More like a child shooting you with a harmless popgun in the side. The sound is the most startling thing. There is no pain. Afterwards they made a roll of towels and then I was instructed to lie on the biopsy side on the towel roll to apply pressure, for about an hour. I did request and was given some mild pain medication, but the discomfort was short lived.
Family was allowed in at that time. If I remember correctly, I think I was able to resume regular diet and activity right away.
That towel roll trick can help ease the capsule pain when you're at home and it starts up. With liver damage comes a concern about risk/benefit of pain meds, especially over the counter. You will probably want to avoid tylenol (acetaminophen) and ibuprofen can be a little tough on the GI tract.
i'm sure they will advise you. And with the level of pain control you're on you may not need any of that. Another tip for the capsule pain... it really does help to get off your feet for a while, and lay on the side that hurts. It works for me anyway.
I can't alleviate your fears and I won't tell you everything will be all right. I will say that I join the others in "shaking our fists at the universe" and I hope you fill your head with as much knowledge as you need to help you feel just a little bit disconnected and a little bit more in control. That part I understand.
With so much love and respect,
Thanks to all - I found it hard to write about this but am glad I did.
Lisa and Jim - I am so glad you have found happiness together despite your individual griefs. My husband is being amazing - sweet and steadfast - but is very distressed, though he rarely shows it to me. The one thing guaranteed to make me cry is the thought of causing such turbulence in his life now, and of his loneliness afterwards. But he is a great survivor, and I hope he will eventually find solace and happiness with someone else - he is young enough and resilient enough for that.
Debra, thank you for exactly what I need - a bit of detail! Everyone has been a bit vague about the procedure which led me to think it must be particularly grim ... I have my cousin (a professor of medicine) on hand to see fair play.
I know how hard it must have been to write that but I am also glad you did! Thank you so much for your support of Jim and I :) We are constantly amazed and in awe of the happiness we have found together and know that Mark and Liz would want this for us. I admit that I struggled some in the beginning with whether or not I should be happy with someone else. But I know that Mark felt about me just as you do about your husband and he wanted me to be happy again. Please give our best to your husband as I know he needs the support also. We are keeping you both close in our thoughts....
Along with so many here, I'm saddened even if not shocked by your latest news, given your concerns about how you were feeling in recent weeks. I wish I had new, insightful answers, but of course you have already armed yourself with a great team that includes both professional and personal support. I'm glad for that.
At this point, I'm just one more in your collection of your long-time fans, thinking of you and hoping for the best for you and those so deeply invested in you.
Dr. Howard (Jack) West
Associate Clinical Professor
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
CS, as the others have said, I am sitting here trying to comprehend what you just wrote, with tears flowing for you and for all of us that have to face this unfair fight. I wish there were some words that would make it better for you but words are meaningless.
So until I can think of something to say that isn't silly, as always, you will continue to be in my thoughts and prayers. Your willingness to constantly share your story and to give of yourself is always so inspiring, and I thank you for that.
cs, with my biopsies they weren't trying to get a sample of a specific area, or lesion, just a general sample of tissue. I don't know how much difference that might make.I was positioned on my back. I will say that they take things slowly, and they are very careful before and after. I guess one could perceive that as a "grim" environment. I was just grateful for the professionalism. All procedures carry some risk, and this is one that I would not want to be rushed through. But in terms of impact on my body, it was a breeze both times. I'm just sorry you're in pain, I'm guessing from your liver being enlarged (hepatomegaly). It is amazing how much the pain can migrate to back and shoulders. I'm glad they're giving you the good stuff.
Like others I wish that there was something I could do or so.
You do seem to be holding your nerve in the face of such crappy stuff. Your concern and appreciation of your husband is lovely to read.
Your writing is descriptive and wry, with that lovely pragmatism that we know of you.
We know it's not over til the fat lady sings ( is it still ok to to say that in tis world of PC) and I have my fingers and toes crossed that you cn get the tiger back in the kitchen at least.
One day at a time. Please kep us posted.
Hugs through cyberspace.
Holding you in my thoughts and prayers cs.
Certain spring my friend, like Debra I didn't want to open this thread. I worried yesterday that I was waiting for the other shoe to drop. My instinct is to turn my attention to the planning stage but I very much get your wish for this not to turn into a what's next discussion. So let me say hurrah for pain meds and steroids don't be bashful about using them.
I'm very glad you have such a loving husband with you, your brothers, and an open and involved medical team. I know they create a huge safety net. I wish I could be there too. But, I'm here through cyberspace and offer all the love and tenderness in the good vibes of my meditations.
love and hugs,
I just want to send my hopes that you and your oncs can find something to throw at it. And when you do, throw it really hard. Everyone here at GRACE will be glad to help back that up with some muscle. Take care --mikem
PS. Sorry, I get a little corny now and then.
Be brave CS! There appears to be juice you haven't tried like Alimta (my dad achieved disease control for a good 1+ year with this) and Taxotere (something still in our pocket if the clinical trial doesn't work out) , and who knows what may become available in the near term.
Please stay strong!
Hi CS -
I am sad, but happy to hear your visual voice. You truly are one of my favorites here (there are so many, even though I don't post much, I do think the absolute world of everyone here). This group has changed my world, and how I think of so many people, of disease, and of bravery. It is the most brave to admit that you are afraid, and this thread has completely touched me in its whole.
There is a thing, I think, like a low level shock. You do what you need to do; you continue on, your brain protects you in a weird way. You take the steps one at a time… deal with the new singular pain, then deal with the next thing. It becomes the job. Opiates and steroids are your friend, most definitely. Don't ignore the ever faithful anti-anxiety med.
In the Life of Pi – the tiger (Richard Parker) was at bay during the time they are shipwrecked almost on an understanding between him and Pi, living in the lifeboat tolerating each other. Keeping Richard Parker satisfied but somewhat submissive on some level kept him alive. Of course, he had to pee in the boat to establish his alpha status. I guess I like the analogy of the story. I am not suggesting any peeing.
One thing at a time. Chin up. Stay comfortable. Keep talking.
Visit my bio here.
Stay Strong Lady! Keep this positive Vibes rolling! We are all Praying for the two of You! Hang in there!
Lorrie from Ohio!
I'm sitting in Surgeons office as we speak! Just left ONC. Pleurentisis wasn't 100% successful, Surgeon is going to want to insert the Cath tube and Bag temp he said and I have decided to go a different route for a little while? Don't want the Cath just yet! So will try doing a drain first and wait and see how fast it fills up again?
Thank you so much to everyone for your understanding and encouragement. It has been grim - the sheer speed with which the liver symptoms have come on is frightening. I have gone from being functional to not very functional in less than two weeks.
The biopsy was not, alas, the calm experience that Debra described, although it could have been (and it was very useful to hear about it in advance). The pain was awful - unfortunately one of the nurses didn't give the dose of fentanyl that was requested, so I was in what doctors call "some discomfort" and they had to sedate me. Recovery was riotously noisy, if cheerful, and no one seemed to know what to do with the biopsy, which did nothing for my confidence. Today I trailed off for a speculative assessment at a phase 1 trials unit with an orange tummy and a tremendous wheeze - it seems the liver is pressing on my diaphragm and compressing the lungs. We tried the towels last night (thank you Debra), and a hot water bottle also helped. My husband is being saintly - coming home early and working from home more. When I am not in floods of tears we have a lot of fun.
Like some of the others, I opened this, read it, and just left to cry for a bit. I am so very sorry you are going through this, cs. I wish I had the power to do something - - anything - - to make it even a bit better. But all I can offer you is my friendship and love - - and to let you know that I think about you every single day and just wish wellness for you. You are right to say that the despair is the worst part of this. . .I remember how very crippling it was. The way that I personally dealt with it was to concentrate on the issue at the forefront at the time - - which for my Mom was her air-hunger. So, I just concentrated on that and focused on resolving or calming that issue. I tried very hard to push everything else back in that moment. Essentially taking bite-sized pieces of the bigger problem and dealing with it. The big picture is just too overwhelming. Of course, there are some great meds out there to calm the nerves as well. My Mom became a big fan of Ativan. . .
I love you, cs. . .And, I'm keeping you very very very near.
I'm so sorry the procedure was less than I described. I hope they got sufficient tissue for their needs. Pain generating from the liver can be pretty consuming, and what works well, anti-inflammatory medications, are not good for the GI tract in general, and Tylenol in excess is bad. I makes it difficult to control.
I have found that if you can get a super dose of something that stops the inflammatory process in its tracks, that the pain becomes easier to stay on top of. I'm thinking back to my VATS surgery, where opioids were not very effective and I asked for an anti-inflammatory. What I got was a shot of ketorolac, and I got immediate and total relief.
I think when inflammation starts that it seems to be system wide, and causing problems all over the body. I guess it is cytokines or something (I don't really know much except how I feel). If you can stop that production of inflammatory substance, then you can get ahead of the pain with much less medication.
That's my uneducated theory anyway.
I am most concerned about your difficulty breathing. That is such a helpless feeling. I hope you are not trying to push yourself too much. Try to rest and relax as much as you can.
I love you too cs, and am thinking of you every day.
I'm just so sorry, cs. You are incredibly deserving of the adoration of your husband and everyone here who wishes we could do more than care deeply about you and share in your concern.
This is all very humbling, for patients, caregivers, and doctors alike, to be so unable to make things better, though we desperately wish we could.
CS, we are saddened by the progression, and thankful to your continuing in sharing experience despite going through such a rough patch. You show us how this unfair battle can be fought with great degree of grace, dignity and courage. You are such an exemplary person.
Cs- When you said in your earlier post about knowing this was coming, it really hit home with me. I too know that intellectually but as in my case, as the years go by I wonder how I'll handle the news. Better than my husband will I know. I think I was better prepared early on after diagnosis to hear bad news.....
Keep helping us all hold our nerve.
Certain spring, I'm sending you all the love and comfort I can. I hope you catch it.
You're awesome and loved.
Thanks to all. This has been a bad day, so I very much appreciate what has been said.
Actually I'm wrong. Not such a bad day. An up-and-down day. But better for the kindness and support I find here.
Well that's because you're awesome and loved.
May 28, a day that will go down in infamy. Lung cancer took my father that day, and coupled with Certain Spring's news, I've been bludgeoned. Now that the wind has gone out of my sails, my platelets are at 58, and the pinching pain in my right side has me wishing I'd pirated some of my Dad's liquid morphine before the hospice nurse got rid of it, all I can hope for is what Certain Spring said years ago, which our friend TS quoted in her last blog post - "This tidal wave comes and crashes over you, yet when it's gone you find you're still standing. Can be quite exhilarating. Hope it gives you a sense of your own resilience."
None of us may be feeling very resilient right now, but in spite of our sorrows I continue to hope we'll overcome our disease once again, and if not, that at least our husbands and loved ones will circle the wagons and ease our passage to Elysian Fields (just as good if it turns out to be the Old Course at St. Andrews or the champs-élysées ).
Our experiences, all so similar, have created a strong and therapeutic liquor. As we add wisdom to this brew called Grace, so should we gather, drink, and gain strength from it. Sorry to be crying into the pot right now but thank you for the safe haven and the drink.
Endless love and strength to all.
Oh Jazz, this is awful news, I'm so very sorry.
I love your metaphors and certain spring's too.
The Grace brew welcomes your tears and so very glad it is here for us all to add to as well as the wisdom the hope and the pain. I absolutely can't imagine the tangle of emotions churning around you. I want you to know that I am here in sweet om Alabama sending you comfort.
Call a doctor nearest you and have a prescription or 2 written for some meds. There's no need to manage this without a bit of help from the chemistry lab.
With my sincerest condolences,
I am humbled and honored to be part of this phalanx. Beautifully said Jazz, and I'm so sorry. CS, continued love.
Jazz, I'm so sorry about your dad. You worried about him and helped him so much. I hope your mum is coping - she must be an amazing woman.
You are a tsunami survivor, and your resilience is inspirational (you must get it from your mum). I know it can be lonely out there on the edge of the cliff, and you've had some cruel losses to cope with. But you are still standing and engaging passionately with life. As Gail said recently "Living like I'm not dying". You do that magnificently and I'm proud to know you.
Janine is so right - I have 2 x bottles in the cupboard and I feel better just knowing they are there.
Jazz - I too am so sorry to hear about your father. Your incredible strength will resurface I'm sure. You've been one of my heroes here.
I'm so sorry, both for your pains and for your father's passing. You are a remarkable, inspiring person, even with all of the challenges you've faced.
Jazz...Our Jazz - -
I'm so sorry about all of it. . .the loss of your Dad being at the forefront, very closely followed by my hopes and wishes that the pinch in your side is nothing more than a pinched nerve. But, do what Janine said - - call someone and get some meds.
I'm too gutted and can't find more words right now. . .Heartbroken actually. . .
. . .and adding some more of my own tears to the brew.
Wow, you all are so remarkable.
I am so sorry for these turn of events in CS's and Jazz's life. Like Laya, I too feel gutted. I just lost a good friend in a car crash two days ago. The sadness right now for everything is at times overwhelming. I am praying for you all here, that God will be gentle.
Love you all,
Thank you all for the kind words and support. I didn't mean to hijack CS's thread. CS, how goes it? When must you make decisions? How are you holding up? I know you said you didn't want to go into a planning discussion... to which I can relate (scary as it is, but tiresome too).
I hope the center is holding. Can you breathe (or at least try to)?
Phalanx is a great word. If only our immune systems would oblige.
CS, I am so very sorry for what you are going through. I just told Debra in her thread that Jim and I were discussing with the kids earlier just how special GRACE is to us and that means also some of the very special people such as yourself. You are close in my thoughts as your journey so closely mimics Mark's at this point. It's good to hear you are being very well cared for by your husband...love and (((hugs)))
Jazz, I am so, so sorry for your loss. Life can be so cruel and unfair! You are another special person here at GRACE and will be close in my thoughts...love and (((hugs))) to you as well
CS and Jazz,
As is often the case, my better half has said exactly what is in my mind as well as hers. I am saddened and sorry for everything that each of you has had to endure and continue to struggle with. I have followed each of you in your journeys with cancer ever since you joined GRACE and have been humbled by the grace and strength and humor (for you, CS, "humour") which each of you display on a daily basis, not to mention the generosity of spirit you have shown in your willingness to help fellow travelers walking similar paths. I could only hope to be as brave if I were faced with even a fraction of the difficulties you have faced. My thoughts are with each of you.
<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>
Jazz, I'm so sorry for the loss of your father. I lost mine in November, so I can understand what you must be feeling right now.
Chebird, I'm sorry for the loss of your friend. That is such a difficult thing to go thru.
CS, I think of you daily and hope that the days are getting easier for you. You know we are all here for you as you have been for us.
As always, the 3 of you and all of our GRACE family are in my daily thoughts and prayers.
Chebird, I am so very sorry for your loss as well...
Will be keeping you in my thoughts,
Holly - -
I'm so sorry to read about your friend. It's all so devastating.
Sending you lots of love,
So here we are, myself and my husband, having a quiet Sunday afternoon that seems all the more precious because we haven't had one like it for what feels like weeks. I am not flat out on morphine and he is not running round in circles, but drawing peacefully. I have come back to GRACE, which I haven't been well enough even to look at, and I am out of my pyjamas, which must be good even for a short time.
I have a big, visible tumour in my liver which makes it hard to walk, eat or do my trousers up. Watching it grow every day has been like living in one of the Alien films. The pain, terrible at first, is now rather too much under control - ie I don't feel much but I'm not always lucid either. I also get nausea which is proving hard to control.
Meanwhile the primary site in the lung has been doing its usual thing - "Same old same old", says the surgeon, who found the stent to be blocked, though not with cancer - so I am very breathless and uncomfortable. In a matter of weeks I have gone from regular swimming to finding it hard to walk on the flat. The liver makes breathing harder, as it presses on the diaphragm.
Even though I always knew something like this would happen, it has been a big shock, especially for my husband who suddenly finds himself having to act as carer. Which, I may say, he is doing amazingly well.
My oncologist has taken me off Tarceva and put me on compassionate use Afatinib, a nail-biting process that involved us going to the hospital every day for four successive days, only to be turned away because they hadn't yet received it or because I had failed one of my liver function tests. Very frightening.
There are, surprisingly, relevant trials available, but the fear is that the sheer bulk of the tumour in my liver will kill me before they become possible. That is what I am expecting to happen, although I am hoping to be made more comfortable in the meantime. Love to all the regulars, and think of me please.
This sounds horrible, and scary and very very shitty. So concerned for you. I have everything crossed that the afatinib creates some relief .
I am saddened to hear your latest, and as is often the case with cancer I feel so helpless. I wish I could do a search and find something to help you, but I know you would have found it already. Of course our thoughts are with you, and I'm sure you are being thought of all over the world not only by the regulars but also by many GRACE users you don't even know and who never even post. We are all sending a tidal wave of support and love to you and your husband.
It's wonderful to hear that you and your husband are enjoying a precious, peaceful day together and I wish you many more!
At the same time, I am feeling very, very helpless right now after reading your update. I absolutely hate cancer and what it does to patients and family members alike!!!
I will hope right along with you that a trial will be possible! You know that I am all too familiar with what you are going through right now so I am also hoping, right there alongside you, that you be made more comfortable!
You are always in my thoughts and I know I speak for all of us who send our love and support to you and your wonderful husband!!!!
Lots of (((hugs))) to you both,
Yes, CS, I too an very saddened to learn of how difficult things are for you, even though I'm comforted that your husband is such an attentive caregiver and that you are sharing some good time together. For what it's worth, you needn't even suggest that people continue to think of you -- it's a community-wide pastime that reflects how deeply we all care for you.
Sometimes I think it's amazing how much we can become invested in each other even when we're spread all over the world and haven't even met. But it happens.
Thinking of you,
Certain Spring, I'm saddened to know you are struggling so but admittedly glad to have word from you. It's so very little and quite likely inconsequential but at every yoga practice I send to all Grace and especially my Londoner friend positive energy and hopes that tomorrow will be a better day. Please let your husband know he is loved by many at Grace for caring for our cs.
Happy for the good day.
Love and Peace,
I hold you forever close to my heart, both as a remarkable and amazing. Woman and also as someone who gave warmth when I first landed here on GRACE in my own misery. Thank you again and may tomorrow be a better day.
CS, thank you for updating us. I think of you every day and I'm so glad to hear from you but so very saddened to hear that your news isn't better.
You will continue to be in my thoughts and prayers.
Crying, but so happy to find an update from you, grim as it sounds. I do hope afatinib confers some relief. And I hope (for you and for everyone here) that death is not as close as it seems.
Am feeling like hopping a plane to London, just for the chance to serve you tea, or bring you something you've always wanted (besides new body parts or the money to purchase them, which sadly I, nor even Steve Jobs, could not provide). Now I am becoming "one of those" people who want to help but don't know how.
As everyone has said, the love for you from those here and globally runs deep. Please hold on.
Big hugs, curses to the moon, wishes for tumor regression and ability to enroll in trials. Continued strength and saintliness to your husband. And more good days like today.
Hey CS! So sorry you have been having such a hard time! As the others have stated, Glad you feel well enough to give us an update! I had missed seeing your posts! I pray things will lighten up for you! You have been so very helpful every since I came to this site! As Dr. West said we all become close without ever even meeting one another. So we're here for you Sweetie! Stay tough and know we're all thinking only good thoughts of you and your Dear Husband! Lorrie from Ohio!
CS, I'll be keeping you in my thoughts and prayers that afatinib shrinking that liver tumor.
Take care, Judy
CS, I'm sure I share this with the others... that throughout the day I check GRACE, and that over the last few weeks foremost in my mind has been the hope, but also the fear, that there would be an update from you. When I saw the words "Holding Your Nerve" this morning I instinctively logged off. It took me hours to come back and read your post, and more hours still until now, and I am struggling to respond in some rational way.
For those of us who know, I think we travel through time and space with a kind of "not today" mentality, and then when we are faced with something that we really knew was coming, we are still just jarred by it. Thrown completely off balance. As you said, "Even though I always knew something like this would happen, it has been a big shock..."
And our loved ones I think allow themselves to hope that maybe all of this really will go away. And then they are forced to confront their fears, and are called to step up and perform feats of great courage and strength, forcing back their pain lest we should see it and become more frightened and saddened that we are putting them through this.
None of this makes sense, and I don't know but can only hope that those who have gone before and those who will follow are somehow restored by the transition, and indeed gather together, whole, all knowing, and at peace.
I am embarrassed that I ever thought that I knew what the liver pain was like for you, and I hope you will forgive my arrogance in suggesting what I thought would help. I cannot imagine watching the tumor grow and only finding relief upon being anesthetized beyond clarity.
I need to say to you that it is okay to let go, and that you will know when the time is right. Perhaps soon, perhaps not for a long time, but I have held the hands of two who have gone before us, and they knew. And those of us who have come to love you will carry on, and continue to be amazed and grateful that we were allowed to share some space with you and be
uplifted by your spirit, educated by your vast understanding, supported and calmed by your words, and given the opportunity to witness true GRACE.
I am better for having had the opportunity to know you, and wish you comfort and peace.