fhlformom
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Lany, Marion, Darla, Debbie, Catherine, Gavin, and Kris thank you all for your kind words. You don’t know how much it means at a time like this. Hopefully you all are enjoying a relaxing weekend, and living life to the fullest!
*** Update, Saturday, 20 June 2015 ***
I finally made it to my mom’s in Georgia. I’ve been in Texas for the past two weeks helping my grandparents (my mom’s parents). My grandmother is going through radiation for breast cancer. She had surgery a few days after my mom told me about the docs finding the mass on her liver. What are the odds of both your mother and grandmother both finding out they have cancer within a few weeks of each other?!
Mom looks great! Yes she is jaundiced. Yes she is weak. But her spirit is alive and well!
She wanted to get out of the house for a while today, and mustered up the energy to get her hair done! I was amazed by this uptick in energy. She has set into a routine by waking up around 7:30, enjoying the morning and day as much as possible, taking a nap around 2:00, and enjoying the afternoon and night until 9 or 10 or so. She is determined to live each day with as much quality and life as humanely possible. She is my hero! She is currently on 3 meds:
– one to possibly slow down the PSC
– one for nausea and to help prevent vomiting
– one to break down the bile and help prevent infectionShe is eating and maintaining fluids well. She does have an intermittent cough but the doc says that is ok as it will help her bring up whatever is in her lungs to help prevent respiratory issues.
The head onc on her Emory team gave her the info for a palliative care specialist here in the Augusta area. Unfortunately, here in this part of Georgia palliative care is combined with hospice. When most people hear hospice they automatically assume “care for end of life” as in imminent. This is how her husband views it. He does not want anything to do with that because of this negative stigma.
I am trying to navigate the waters to help them understand that hospice is not a negative, but a positive. They are there for both my mom and for all of us as caregivers. Any words of advice that any of you can give would be much appreciated.
Mom is fully aware that she cannot fall back into the place that she was in before going into the hospital a week and a half ago. She was sleeping 20+ hours a day, nauseous, and therefore did not eat or maintain fluids as she sould. We are trying to avoid a repeat of this. Unfortunately, I think the intial shock of the diagnosis had a huge effect on her mental state that caused her to spiral down for a bit. The more that I think of it I would have done the same thing. Like her, I tend to internalize everything, and take everything to heart. Who wouldn’t when you are told that you are fading?
Anyways, I just wanted to let all of you (that have taken the time out of your own daily life to invest your emotions and thoughts into my mom’s journey) know how she is doing. Thank you again for your words of encouragement, your suggestions and advice, and for being a shoulder to both listen and cry on.
Best,
Jason
Thank you both Iowagirl and Gavin for your words. They are appreciated.
*** Update, Wednesday, 17 June 2015 ***
Mom was released from the hospital this afternoon. The medical team came by and talked to mom this morning. I’m so glad her husband was there, and that my sister was able to spend the day with her.
The head of the medical team led the discussion. They said although the news was not good, he was very comforting, reassuring, answered all of their questions in depth, and had a great bedside manner. Why do some doctors get it and other doctors are simply clueless? Maybe empathy, compassion, and a proper bedside manner should be a topic not only for medical students, but a reoccurring toping for all physicians and medical staff throughout their careers.
What we know:
The Bad …
– Tumor is on the left lobe of the liver
– PSC has encompassed the right lobe and is what has caused the extreme inflammation of her
biliary tree.
– Today was the first day that ANYONE has mentioned PSC (primary sclerosing cholangitis)
– The PSC will eventually cause mom’s liver to shut down.
– He said this will likely be what causes her to pass, not the cancer.
– He explained PSC within the bile ducts with the analogy of a straw. Imagine being inside the
straw (like driving in a tunnel). You can go an inch then the path is blocked due to the PSC
constricting the bile duct. After that blockage, you can go another inch then another blockage.
This repeats throughout her whole biliary duct tree.
– This is the reason why the stents can’t be done. She is too weak and the external drainage
would be of no use to her.The Ugly Truth of it All …
– Mom will recieve palliative care. Not the news that any of us wanted, but I’ll say more about that
in a minute.
– The leading physician said that she has had PSC for years. Unfortunately this is a result of her
Ulcerative Colitis.
– Obviously he could not answer to why they did not find this 23 years ago when she had her
colon removed for the j pouch surgery. It very well could not have been there yet.
– More perplexing is why this was not seen 6 or 7 years ago when she has surgery to clean up
the adhesions (scar tissue) from the original j pouch surgery from years before.
– She has gone to her gastroenterologist as requested on a yearly if not 6 month basis every
year. Not once was anything said to her about PSC!Bottom line is … does it really do any good to be angry, upset, or distraught? It isn’t going to change where we are today. The leading doc today did say that she could have had a transplant if it had been caught years ago. He also said that transplants are not possible for patients who have CCA or any other cancer on the liver. I could be political, but I will take the higher road. My take is that if she was the queen of England, or the president that something else would have been done. Not trying to cause a mass controversy, so I’ll stop. As I said earlier, it doesn’t change where we are today.
The Good …
– Is there such a thing as any good at all?!
– For us there definitely is. Mom is still with us, and amazingly is able to smile through all of the
heartache and tears.– They talked at length with the doctor about the next step now that she is leaving the hospital.
– The doctor prescribed a pain medication, a nausua medication, and a new drug that might help slow down the progression of the PSC.
– To prevent mom from being in the same position she was last week before going into the hospital, it is imperative that she take her nausea medicine every day practically. Usually she’s always taken it when she feels nauseous. Wouldn’t we all do the same thing? He said for PSC and CCA it is too late when you already feel nauseous. So take it everyday, that way there is a better chance of preventing it all together. She must also eat to get nutrients and drink a lot of fluids everyday to prevent dehydration.
This leads to the only good in this entire PSC/CCA journey. Our hope is that with the right plan in place, her remaining time is full of quality and comfort. That she is able to glow and have not only a smile on the outside, but a true inner smile that lets us all know that she is in good hands. That she will have many quality days that are pain free, and full of happiness and joy.
– The doctor also made it a point to say that my sister, her kids, and myself will need to get yearly colonoscopies as there is evidence of a genetic predisposition to PSC. I actually had one a few years ago, but will definitely get another one and start with the yearly. Prevention will be best by taking as much of a proactive approach as possible. Does anyone know if they do preventative endoscopies? Or what the current research says about getting elective CT scans from time to time (regardless of whether you have to pay out of pocket or not) simply for the peace of mind and reassurance that this horrible disease will not affect anybody else within our family? Please let me know if you do.
***
Looks like I’m long winded as usual, so I will wrap it up. I will close with this. Thank you all for your continued positive thoughts and prayers for mom as words alone can’t tell you how awesome they make her feel. I do have a favor. If I could be selfish for a minute, would you please pray for me that for the remaining time that my mom has that I will be able to be a beacon of light. I don’t exactly know how to say this. I really don’t think there are any words, but I want to do everything within my power to help my mom make the transition to Heaven with ease, with love, and with dignity.
With much Faith, Hope, and Love for Mom, and a whole lot of positive thoughts for us all,
Jason
Thanks Cathy, Lainy, and Darla for both your kind words, positive thoughts, and much needed prayer.
Still praying that Dr. Chapman can offer hope and much needed encouragement.
Best,
Jason
Hi Lainy. Emory was the 2nd opinion (where she has been for the past 5+ days). I’m waiting on Dr. Chapman at Barnes-Jewish to get back with me about a 3rd opinion. I’m contacting Memorial Sloan Kettering tomorrow to see if they can do anything.
They said that a bile drain (PTC) through her side (external drain with the pouch) can’t be done nor biliary surgery. We are supposed to find out tomorrow. It just doesn’t make since. I guess the PTC (percutaneous transhepatic cholangiography) can’t be done since a tube can’t be placed into her bile duct at all? I’m at a loss for words.
Thank you for your good thoughts and prayers.
Best,
Jason
Thanks Marion. My mom got remarried last October to a great guy. He called me to let me know. He obviously was real shook up. I agree, we all deserve to know why a drain could not be done? I guess for a drain to be done the tube still needs to be able to go into the bile duct?
I am 700 miles away helping my grand parents. My grandmother (my mom’s mom) is recovering from breast cancer. She had surgery the week after my mom found out that she had a mass on her liver.
The onc team is supposed to come by in the morning to talk to them. I really don’t understand what for as now it is not an option. Out of all the posts that I’ve read on here I have not seen anyone not be able to at least have the bile drain done if the stents were not an option. Pretty much everyone that I’ve seen was able to have the stents.
Does anyone know why transplants are automatically ruled out for those who have CC? Especially those who have CC that has not spread? I could be wrong, but it seems as though they are just cast to the side and forgotten about.
Best,
Jason
*** Update, Monday June 15, 2015 ***
Mom had the ERCP procedure done this evening. The doctor’s came out and said there was nothing else that they can do. The tumor had constricted the bile duct too much to do any stents. I don’t understand why a drain could not be done.
Obviously without some type of drainage, her jaundice will get progressively worse. Chemo is now not an option since they can’t clear up the jaundice. I take it the bile will just continue to back up until it causes sepsis. Sepsis will take your last breathe away.
I feel completely broken and crushed. Trying to understand the reason. Especially when such an awesome, wonderful woman did not deserve this. No one does.
I wanted to thank those of you that responded to the questions that I had asked. As well as others for reading my mom’s story. Please take care and know that in this short time many of you have touched my own life in reading about your journey, and for that I truly thank you. Take care.
With much Faith, Hope, and Love for Mom, and a whole lot of positive thoughts for us all,
Jason
Thanks Cathy. Glad you are doing so well, and have defied the odds. I know you have given so many people on here so much hope.
Best,
Jason
*** Update, Friday, June 12, 2015 ***
We Will Never Give Up
They came and get mom this morning for the MRI/MRCP. Things went smoothly. Later this morning the oncologist came by to go over the results of the MRI. He said the team had reviewed the MRI.
The tumor is on her left lobe. It has wrapped itself around the vein/duct on her right lobe. Obviously not what we wanted to hear. But as with everything you’ve got to stay cautiously optimistic. Because of this surgery, is not an option as this point.
Her journey is paralleling so many of yours. The oncologist said the bilirubin is at 30. 5 weeks ago it was at 2.5. I can’t help but think what could have been done in the past 5 weeks if they would have rushed everything. Right, wrong, or indifferent, it doesn’t change where we are today. Stay positive right?
She is still getting IV fluids thankfully. She has been taken off her antibiotics via the IV. The oncologist wants to go ahead and get the ERCP scheduled asap. It will not be today, but he is trying to work it out to do it this weekend either tomorro, or on Sunday. If not, it will be early next week. He feels optimistic that he will still be able to stent.
This in turn should stop the bile from backing up into her blood, and hopefully relieve a lot of her symptoms (nausea, vomiting, fever, etc.) sooner rather than later, with ultimately relieving the jaundice over the next two weeks.
Early next week they expect to release her to go back home for the 2 weeks. In 2 weeks she will come back to give blood to check the bilirubin levels in hope that it has come down. The bilirubin level needs to be down to start the chemo.
We are hoping and praying that chemo is indeed an option. And once used, will indeed shrink the tumor with the miracle of her being able to have surgery. Remember, all things with God are possible.
*** Questions ***
– How high was your bilirubin or that of your loved one’s? How did you get it down?
– I am worried about them releasing her from the hospital and her ending up back to the state
that she was in before getting to the hospital. With the stent in do you pretty much feel back to
normal except for the fact of this “major life inconvenience” called CC?– What diet have you seen has worked the best?
As always, I’m also scouring this site to also search for these answers.
***
We know that her treatment as this point is palliative in nature, and not curative. Mom, along with us all are determined to turn the palliative into curative. She is not a statistic, she is a human being like all of us who has emotions, desires, goals, and a strong will to live. She is my biggest inspiration.
As many of you have said, and as I have said to her, we don’t have an expiration date. This is not a death sentence, this is a horrible disease that is very rare and will be dealt with in the best way that the human spirit can to preserve as much quality of life, happiness, health, and contentment as humanly possible. This will be in conjunction with her medical team, the support from everyone with never ceasing prayer, and above all God.
Best,
Jason
Thank you both Darla and Lainy for your kind words.
*** Update, Thursday, June 11, 2015 ***
God is good. He is starting to reveal more of his plan for mom. I hope no one takes offense to my spiritual side. But quite honestly there is no other way to feel as he definitely is answering prayer. Not only for my mom, but for so many of those with CC, other medical issues, as well as the many of us who are caregivers.
Gastroenterologist came by today. He went over the results of last nights CT scan. He said that the tumor had not grown any in the past 6 weeks since mom’s initial CT scan. He said that a MRI was being scheduled. He said this will help the team decide on the most appropriate course of action. He then said because there is just the one tumor on the left lobe that it possibly could be resected. All great news.
Mom said she feels 100% better than last night. Which was 100% better than yesterday afternoon. The doctor took her off NPO. She is on a liquid diet for the rest of the day until midnight. It was so nice to hear her voice and her laugh again, as well as to see her have an appetite again!
She also had a good night’s rest. This afternoon some of the medical team came by. The surgical team went over the same thing that the gastro said, but added that some of them thought that the bile duct might not be inflamed at all, but that the tumor might be leaning against a duct itself. They then said that if this was the cause, removing the tumor via resection of the liver will take care of it.The oncology part of the team went over the same thing and said that there will also be an interventionist (radiology) and gastroenterologist as a part of the team. I really like the multidisciplinary team approach to coming up with the best possible treatment plan. They then said that the surgery calendar was full tomorrow (Friday). The MRI that has been scheduled would be the more enhanced MRCP. This will allow them to have a more in depth view of the tumor, liver, bile duct, and all the other organs to ensure no spread and to help develop the overall treatment plan. This should be done tomorrow. Crossing fingers. The next step will be an ERCP. After that, they will have a better understanding of the next steps as for possible stenting, as well as possible resection.
So for now we are in a holding pattern. Which is definitely fine! It will be nice to have a few extra days for her body to continue to regain strength (both physically and mentally), and to allow the entire team to come up with the most effective treatment plan by taking all of the necessary precautions.
Although I felt major hope last night by simply knowing they were going to admit her and to give her fluids, mom said today was the first time she is feeling that there is real, tangible hope. We are all trying to stay as optimistic as possible. The other choice is to be optimistic. In other words, there is no other choice other than to stay positive. This is helping all of us with the stress. I don’t know how so many of you have endured this for so many years. I know CC can throw curve balls. But I also know that it’s no longer in any of our hands.
We could wait for the other shoe to drop, but we’ve chosen to forge ahead and go through the door that is opening. As Lainy put it, we are barging through! We know there will be bumps and turns in the road ahead. However I know those will pale in comparison to the joys and hope that we are carving out of this journey. Although I am quite a realist, I’ve chosen to stay positive regardless.
With much Faith, Hope, and Love for Mom, and a whole lot of positive thoughts for us all,
Jason
Thanks Lainy. Truth be known, I find it to be more of the other way around. As I’ve said before, all of you are a Godsend.
*** Update, Wedesday, June 10, 2015 at 10:00 at night ***
Good News! Mom was taken to the ER early this afternoon. After being triaged and waiting, a room became available for her to see the attending physician in the ER.
He started her on an IV of fluids and antibiotics. And ordered a CT Scan. Both were done in less time than their ER wait! Nonetheless, during that time she took in over 1 liter of fluids and 750 mL of antibiotics via the IV. Looks like she was dehydrated?
Within an hour of having the CT scan, another doc came by and said that she was admitting mom to the hospital. That her case was very complicated, and that the biliary doc experts will take over tomorrow. They will probably want to do a MRI before proceeding.
So many people are praying for her, and I know the door is opening. Bottom line … if there is no curative treatment, I now feel that we are on the right path for a favorable palliative treatment plan. But who’s to say that we can’t have both, right?!
Optimism is the only choice. Other good news is that I spoke with Alex with Dr. Chapman’s office. She has received all of the necessary medical records, and the radiological team will convene to make a report on mom’s case. Dr. Chapman will then review and make a decision on whether or not he can help mom. Keeping fingers crossed that this will be yet another open door that will blow open and fall off the hinges. She said they would then get her transported up to Saint Louis. I know these are all small miracles in the grand scheme of things, but they are miracles and great stepping stones nonetheless.
Mom is in good spirits. Seems to be better than now that she has fluids. My hope is that she rests very comfortably tonight, and is able to get a great night’s rest.
Thanks for listening.
Best,
Jason
Thanks Marion.
We are all staying strong. It’s not just me, there’s also my sister, my aunt, and so many others that are searching for ways to help mom. Most importantly, God is in control and is opening the right door.
I’m in Dallas helping my grandmother as she had breast cancer surgery the week after my mother found out that she had a mass on her liver (a little over a month ago). My sister is holding down the fort in Augusta with mom. Grandmother is on the mend. Now it’s time to get mom on the mend as well.
I’m contacting Dr. Chapman, as well as her PCP and others to see what can be done asap. She needs to have biliary drainage in order to relieve a lot of her symptoms and have a lot better quality of life. Hopefully this in turn will give her the fighting attitude that we all know she has to endure this roller coaster journey and be a survivor for years to come.
Thanks again.
Best,
Jason
Thanks Marion for the kind words. I have not been in contact with her PCP. I will do that asap. We all have trust in God and know that He is opening a door.
As in life, sometimes I have the tendancy to read too much into all of the different posts that I read throughout this discussion board. I tend to analyze and weigh were my mom is in her journey compared to many of those on this board, and where they were shortly after diagnosis. It seems a lot of the one’s on here that had ulcerative colitis went rather quickly after diagnosis. I hope and pray that is not the journey for my mom.
I’m a secondary science teacher up in Alaska, so I am well versed in the scientific side of things. Obviously from a non- M.D. perspective. But I still tend to analyze it too much and my science background does not help things as we tend to question everything. The big “what-if” is the unknown answer to the question of “What’s next”. If that makes any sense.
I referred to her as “still awake” because in a lot of the posts several people said that they experienced no symptoms at all for quite some time after diagnosis. I try to look at the common denominators. Especially for the one’s that could not even get out of bed, did not eat for days and had no strength, and those who simply slept.
She is still eating everyday. Small meals, but energy nonetheless. She is drinking fluids so she is dehydrated. She uses the bathroom on her own and showers on her own.
She is just extremely fatigued. Although she moves from the bed to the couch. She’s hard press to do much more. She’s told my sister that it “hurts to even move”. That fatigue along with the jaundice and pain is our primary concern. When I refer to “still awake”, I am referring to her not sleeping the entire day and night. We just don’t know why the diagnosing oncologist said that a stent could not be done to relieve the bile backing up into the blood. This is what causes the jaundice causing the bilirubin to go up, and her jaundice is now turning from yellow to green. I have not seen any mention of that on this site. Has anyone heard of that before?
I know it’s just a waiting game at this point tonight. We are all just on pins and needles as many of you have been throughout the years. This journey is definitely a roller coaster ride. As I’ve said before, I simply don’t want mom to suffer or be in pain. I’ve heard that once the stents are in place, the jaundice and a lot of the other symptoms quickly subside within a day or two. I know this would give her much more quality of life.
I feel that I’m rambling, so I’ll stop. Please forgive me for being so long winded. I’m just trying to breathe new life into this terrible, roller coaster ride of a journey. With so many unknowns, I just don’t know what to expect, but truly thank you all for the infinite wisdom and hope that you give to everyone. There are so many of you that are simply an inspiration.
Best,
Jason
*** Update, Tuesday June 9, 2015 ***
I contacted Dr. Chapman and spoke with Alex. She is wonderful. We have made contact with all of those who saw her in Augusta to get them to fax their records to Alex so that Dr. Chapman can review them.
Mom has had ulcerative colitis since childhood, she has a j pouch, and no gall bladder.
Fingers are crossed that Dr. Chapman will open up the door that my mom so desperately needs.
She is extremely fatigued, and her jaundice is turning from yellow to green. She still is awake and has 100% cognitive capacity.We are all just hoping and praying that tomorrow will be the day that the ball starts moving even faster to get her on a treatment plan.
I am also waiting on MD Anderson to call us back. They are in the process of also getting her medical records. Does anyone have any other ideas? We are trying to take every approach that we can.
Thanks again for your continued guidance and direction. All of your suggestions have been a God send.
Best,
Jason
