hopeandgrace
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What a light Kris must have been to those in her “real” world. I know she was certainly a light to all of us on this board. Thoughts and prayers to her family and friends.
Hi Johanna,
My mom’s tumor was initially not resectable (she was perfectly healthy, asymptomatic besides some pain in her left side and they gave her three months to live). Our hope was the chemo could shrink it to where it could be removed. After a chemo-embolization and Gemzar/Cisplatin, it became small enough and in a position that was favorable for them to remove it. Be aggressive with treatment and put on your fighting gear! She was treated at UPMC’s liver cancer center (Pittsburgh).
My mom had mets to the bones from cholangio. It seemed to be stopped and treated easily with radiation. She had very mild side effects, if any, from the treatment.
Rick,
I am going to say again what a brave, sincere man you are. You are asking for candor, and I know this is sensitive, but for us, there were certainly signs of the fight coming to an end. Around Thanksgiving, my mom developed the ascites that a lot of others on this site have spoken of. I know this is not always a sign, but for my mom and from what her doctors told us, it was a symptom of the progression of the disease. We lost her a little over three months later. She was functioning quite well even when the ascites set in, though. We didn’t necessarily think it meant we’d lose her in only 14 weeks – she was cooking, working, cleaning… going on with life. About two months after the ascites set in, she began vomiting blood. She developed something called esophogeal varices. She was hospitalized and made a turn for the worse. We could talk to her, but, it wasn’t the same after that.
I really believe your faith and your fight will be tremendous legacies to your children should you WIN this battle and find your victory if your body succumbs to this disease. If I were you, I wouldn’t wait until you see “signs” that things are turning. When you have a thought about your children, or life, or anything, write it down for them. One thing I wish my mom would have done would be help me through the mourning. I wish she had written me a letter that said something like, “Honey, I know you miss me, I know you love me, but I’m not so far away. Everything is going to be fine. I love you. Try not to cry, hug your boys and smile. Don’t waste your time crying looking at pictures of me. Just go on with your day and praise God! I’ll see you soon!!” I know that’s what she’d say, I just wish I had her on video or in writing talking me through this. I had no idea how gut wrenching the mourning process is and she is the one person who could help me through it.
Your children are so blessed to have you as their dad. Praying for you, your kids and your wife.Prayers and good thoughts to you and Kris, Hans. What a wonderful husband you are!! Please keep us posted.
Rick,
I am so inspired and touched by your message and your courage to fight this disease. I am on the other side of your issue. I lost my mom to this disease last March and I can tell you as her child, I truly wish she had left me more of her. I know I will see her again; but for now, I long to hear her voice, I long to see her face, I jump for joy inside every single time I see her handwriting. She is more alive now than ever, I know that, but while we’re separated, I just wish I had some pieces of her here. I lost my mom on my 29th birthday and as I was walking to my mailbox this year, on my birthday I started crying. I was in my mind saying, (and I know this is ridiculous), “maybe by some miracle the Lord allowed her to write me a card and an angel put it in the mailbox for me to get.” I started thinking to myself, if I knew I were dying, I would start getting cards together for my boys (we have a 4 year old and 2 year old and am pregnant with #3) and have someone I trust (not my husband so he wouldn’t have to be reminded all the time) mail the cards on the same day every year. I wish my mom had done that. I wish she had written me letters. I wish I would have had the strength to sit down with her and record our conversations knowing we didn’t have much time, but I didn’t want to scare her. We just kept focusing on the fight, even after chemo stopped. But looking back, I really wish I had asked her more questions and documented our time together better. That’s just my two cents. When it gets me down that I didn’t do these things, though, I am reminded that it’s all so very temporary. I am by no means belittling the situation or circumstances and I ache so deeply over the loss of my mom. But the fact is, she still exists. The Lord has her and it really won’t be long until I join her. Any questions I have, any things I wish she knew, they’ll all be revealed in due time. The things going on that are unseen are so much bigger and grander than the circumstances we’re dealing with here. It really stinks, I know that, but, we know that here we’re going to have trouble, but it’s ok because He has overcome the world. I am praying for you and your family (I have seen your posts before and been to your caring bridge site).
In Him
Annie
“In your hearts, set apart Christ as Lord. Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have.” 1 Peter 3:15
PS – hope this didn’t come off as patronizing at all…Kris,
I am always inspired and touched by your posts. Your candor and sense of humor are lights in a not so fun situation for so many. When I read this post I got tears in my eyes. What a blessing. I know this has to be terrifying but you have a CHANCE this thing could be out of you. You are going to be in my prayers as well as your doctors. Prayer for discernment as they map out their plan and prayer for faith, peace and comfort as you embark on this surgery. Take care and stay strong!
Hi Kris,
When my mom’s tumor was shrinking (and it shrunk by A LOT!) she was having lots of pain where the tumor was. Hang in there!
Blessings!
Kris,
You are an inspiration! NEVER give up hope! When my mother was diagnosed with CC it had already consumed 75% of her liver. They did this exact regime with her – 3 weeks on Cisplatin and Gemzar given at the same time and one week off. Wouldn’t you know, her cancer shrunk enough to have it surgically removed under this regime!! The doctors were absolutely amazed by how much her cancer had shrunk! She had also had some chemoembolizations done before that, as well. Anyway, keep looking up and I pray this combo works wonders for you!
Kris,
When my mom had chemoembolisms done they were not done in conjunction with systemic chemotherapy. I do not know if a human could physically endure both at the same time. For her they worked really well and actually ended up shrinking her tumor enough to resect – but then it spread right before the surgery and the surgery was cancelled. They were really really hard on her but then she would get better after a few weeks and go right back to work (I think she had it done three times – each time the tumor died more and more). Hope this helps!
Hi Charlene,
I have lots of experience with anti-depressants as I have struggled with anxiety my whole life. I have successfully gone on and come off of them with little discomfort but not without lots of trial and error! It is so ridiculous how every single doctor will say, “Oh, just cut them in half for a week and then stop taking them and you should feel fine.” That has absolutely never been the case for me, especially in the midst of such intense grief and life changing circumstances. Give yourself some time to ease off of them. I know the temptation to just stop and just be done and grin and bear it, but, be kind to yourself and the process will be much easier. The nightmares are undoubtedly a side effect of coming off of the Paxil. The way that I have learned to come off (I typically wean off before pregnancies and then get back on after the baby is born) is sloooooooowly cut down on the dosage. I typically give myself about 12 weeks. Get a pill cutter from a pharmacy and estimate about one sixth of the pill. Save the little piece that you cut off. Take that for about two weeks (the larger piece, I mean). Then cut one third off, go two weeks, etc. By the end, you’ll have one sixth. Most of the time when I’m down to that, over those two weeks, I’ll take them every other day for the last week. It feels like it’s taking forever, but believe me, withdrawals are the last things you want to be dealing with on top of the grief.
I sincerely wish you the best and hope that this has helped. Be kind to yourself and take it slow.
All the best,
Annie
PS – A benzodiazapene (sp?) can be prescribed if you do have some discomfort – ask for a small dose of Ativan if you need some extra relief, but if you come off very slowly, you honestly won’t need it.Danielle,
I haven’t posted in awhile but I lost my sweet mom to this awful disease three months ago and continue to check in and pray for you all. I can so relate to your struggles and pain. I know the feeling you mean when you see the bedsores – it looks so painful and there is so much suffering and I am sure your husband is a wonderful, decent man. I said to my dad, “this is like watching a baby deer get beaten with a bat.” These wonderful people and such intense deep suffering, it just doesn’t make sense. The pit of your stomach hurts and watching is so overwhelming, there really are no words. All they could do for my mom was dress the sores. It was so hard and so terrible, I feel ill even recounting it.
What we do know, though, is that their suffering isn’t in vain and that’s what enabled me to get through the day and be able to be thankful for the gifts my mom was giving us everyday that she endured it. The tremendous trials they are winning will be rewarded. This is temporary. He will come through and will understand why it happened and someday so will you. The one thing I learned was that there are many blessings that come from this suffering – many lessons learned and sweet moments. The one thing I really gained from it all was that no matter what, no matter how bad the suffering or sickness, there is peace and the Lord will never leave your side. As bad as it gets, as sick as he feels, he will get better and live in a way that we can’t even begin to comprehend.
I will pray for you and dear Jim.
Hugs and prayers.Sarah,
My heart breaks for you and with you. I lost my mom on my birthday of this year – just four weeks ago on March 3rd. I am close to your age (29) and I know how unfair it seems to lose our moms at such a young age. My mom, too, was my best friend. Our whole family watched as our strong, funny and beautiful mom slipped away right before our eyes. I know the pain you are experiencing – you are NOT alone. I have found so much comfort in knowing several things – 1) our moms are not gone, they just aren’t here right now. They have not ceased from being and one day we will see them again without the worry of ever having to say goodbye again. 2) they are no longer suffering – they made it through! There is no more worry, no more pain – they won the battle. And 3) we were blessed for twenty some years with moms that loved us unconditionally, taught us well and looked out for us – something a lot of people don’t get for one day.
I will pray for you. The Lord has given me so much comfort by revealing His truths and pulling me near to Him. I have learned so much through this experience and am so thankful for the peace that the Lord has shown me is possible even in the midst of this grief. Please continue to post. The people on this site are amazing.
HopeandGrace
PS – I forgot to mention how strikingly similar our mom’s situations were. My mom also had intrahepatic CC and presented with the same symptoms. When she got to the ER after having severe stomach pain, they also assumed it was a gall bladder attack. When they went in to remove her gallbladder, they found the cancer. She fought for 15 months.Hi Stephy,
I am so sorry to hear of your mom’s diagnosis. It is so shocking and scary. I know what you are going through – my mom also has this disease. She was diagnosed in December 2007 and we were completely blindsided. She was 59 at diagnosis (a week from her 60th birthday) and in what we thought perfect health. Stay strong and search everyday for grace – it’s there. The people on this board are so wonderful. Stay connected and informed.
Many blessings,
AnnieThank you, ljg. What a coincidence that your mom was born at West Penn! I know that hospital all too well, now.
Robyn, I am so sorry about your mom’s diagnosis and that you too are dealing with this loathsome reality. Although we have to believe that it is all for the good! You are just about my age – doesn’t it seem like we are still babies ourselves? There are days that I want to just drive to my parent’s home and curl up in my bed in my old room and pretend like everything is OK again. Then I wake up and realize that I too am a mother and have to keep it together. I’m so glad that my words have helped you. We aren’t alone and one way or another, this nightmare will be over and we will someday never be separated and never have to endure these trials again. The diagnosis is still so new for your family. From what I’ve experienced, things do become more manageable once a plan is put into place and treatments begin. Because my mom’s diagnosis was such an unbelievable shock – she was in perfect health – I went through a period of severe panic. It really tested and STRENGTHENED my faith for which I am so thankful. I would sit and hug my boys so tight and cry and cry thinking I would be taken from them in an instant – nothing seemed secure to me, like I was walking through a minefield not knowing what would blow up next. But then through prayer, and grace, I was calm. There was no minefield. We aren’t abandoned here and nothing is random. We know that God is compassionate and all knowing – our ever present help in trouble. We will get through this, our mothers will get through this, and our Lord will never leave us. No matter what happens, it will be good.
Stay strong and you too will be in my prayers.
An update on my mom – the swelling in her stomach is apparently not from any blockages from the cancer, but rather, from the chemo. It is pooling in her stomach and making her pretty sick. They put her on a diuretic and are going to try and drain it as soon as she is done with the script. The cancer in her liver isn’t moving, but they did see some activity on the spot on her rib. She is also going back to UPMC Liver Cancer Center. I think she is a little frightened as she is comfortable with her routine with West Penn, but they are looking to try something else with her at UPMC.
You all are in my prayers and I am not just saying that. I pray daily for you all. God Bless!
