Delirium/Confusion/Hallucinatons

Wow, has she had it tough. I'm a physical therapist, Stage 2c ovarian cancer. As a PT, I'd be wondering about sepsis, UTI, medication combination, small stroke as causes of confusion. It sounds like they were on top of all that. So then I'd wonder about the cancer cells in the fluid. It's my understanding that since the fluid bathes all the abdominal organs, it can spread it anywhere and everywhere. If it was me, I think I'd get a hospice consultation. They know so much. They can give you more practical info to help your decision-making. Their support is awesome -- and trustworthy.  It's a great comfort not to have to bear the burden alone. A consult is just that. You don't have to use them, and if you start and change your mind, that's OK too.  God bless you both on this journey.

Anne

Edward, it sounds like this has been very challenging.  I can't offer much, but I believe that some people have problems after receiving anethesia, similar to what you describe in your mother.  I don't know what can be done about it, if anything, but you indicate that these symptoms started right after her surgery, so that makes me wonder.  Another thing to consider is that ovarian cancer can spread to the brain.  So, you may want to discuss this with her doctor prior to her scan to see if he or she wants to include that in the scan.  Good luck.

Dear Edward: 

 This letter is probably going to be as difficult to read as it was for me to answer.  Therefore, I will preface my personal remarks with this warning--“viewer discretion is advised” because the words are graphic as to their meaning.  The thoughts voiced herein are mine and mine alone.  I speak from the standpoint of a Stage IV Ovarian Cancer patient.  Needless to say, I wish you were NOT here attempting to find some understanding about your dear mother’s condition and behavior.  Several questions arose as I read your letter and I voice some of them below. 

 In reading the whole message, I’m left to wonder, where your mother went for her initial diagnosis?

• What type of tests did they do to settle on a Stage IV Ovarian Cancer diagnosis?

• Who are “they”?

• Did you get a SECOND OPINION?  I don’t necessarily think shifting your mother between 3 different oncologists qualifies as a SECOND OPINION!  The MDAnderson reference listed herein covers various aspects of how an Ovarian cancer is staged and treated?

• Moreover, at any time did your mother ever have any hydration during her chemo treatments?

• Did she only have one chemo drug Carboplatin?  The way you spelled it, I wasn’t certain. 

• You lead me to understand that your mother was “staged” at Stage IV first in January of last year, 2015.  You have written “Carbo & Plat”—did you mean Carboplatin?  Was that the only chemo she was given? 

           Later on in your letter you told us your Mom’s other ovary was removed at age 42.  So that was 32 long years ago. 

 Another question is:  When she was initially staged as Ovarian cancer Stage IV, why wasn’t the diseased Ovary surgically removed?  It appears no surgery was suggested, just chemotherapy.  Also usually two different chemo agents are given to combat the condition.

• Was there ever any mention of surgery early on, or was it just chemo that was prescribed? 

 Seems that “they” might have figured that since she was Stage IV that no kind of surgery would be attempted, and that they would try to give her only palliative treatments of chemotherapy. 

 You are mentioning “quality of life” and that is a phrase I equate with “further down the road” relative to Stage IV.  For instance, I’m Stage IV Ovarian, but first there were attempts to quell some of the cancer’s effects.  After my initial diagnosis (Nov. of 2012), of Peritoneal Carcinomatosis (terminal at some point), I sought a SECOND OPINION at the University of Pittsburgh Medical Center (UPMC) because my husband, whom you see with me in the picture, had such great treatment there for his Esophageal Cancer, Stage III diagnosis. 

 So in December of 2012, (just 3 weeks later) we traveled to Pittsburgh.  There a PET/CT scan and exploratory surgery revealed the cancer was also in my ovaries as well as in the Peritoneal fluid of my abdomen.  Six sessions of pre-op chemotherapy of Carboplatin & Paclitaxel (Taxol) were given.  That is called “neo-adjuvant” chemotherapy.  Then Cytoreductive surgery (CRS) to remove non-essential organs to help prevent further spread in my abdominal cavity was performed in July of 2013.  That was a difficult surgery for me, as I developed a major infection shortly after surgery.

           Now way back--when I was 36, I had a partial hysterectomy.  The ovaries and fallopian tubes were left intact.  There was no medical emergency like cancer that caused me to have that surgery, only difficulties with my menstrual cycle.  So my gynecologist said he would recommend removal of the uterus since I wasn’t going to have any more children.  I was fine with that, and I didn’t have to worry about any more periods PERIOD!  That’s a liberating feeling.  Little did I know, or little did any other doctors know 40 years ago, that Ovarian cancer often begins in the fallopian tubes.  So now I always recommend if a lady is going to have a hysterectomy, “everything” needs to go!  But as we say, “that’s water over the dam now!”

           But even without the more drastic CRS procedure, why on earth was the cancerous ovary left in your mom’s body?  That is puzzling?  It appears “they” might have given up on your mother before they ever started, whoever “they” are! 

           All too often we are clueless about the diagnosis we have just received.  We usually think that the doctor we have always gone to for treatments knows most everything.  Somehow I think that perhaps no other opinions were sought.   A second opinion is not a luxury, it’s a necessity in my opinion.  It is usually paid for by one’s insurance.  The purpose being that it will confirm the original diagnosis, change it altogether, or make recommendations and “fine tune” the diagnosis.   And at this point, the most you might do would be to gather up her complete record of treatment to date to a competent medical team for confirmation as to whether or not your mom is/or was being treated properly. 

           Now we know there is “no cure” for Stage IV Ovarian cancer, or for any other Stage IV cancer actually.  But there are things that can be done to provide a better quality of life during the interim.  At the Stage IV point, cancer has metastasized to another major organ as well.  But often some “pre-emptive” surgery can be given to help stave off the cancer’s spread.  So now I am to understand that your mother has been under the care of 3 different oncologists! 

 Why did the first Oncologist not do anything except send your mother on to a second oncologist? 

• Why could he/she not determine what kind of radiation would be helpful?  And by the way, why was radiation recommended.  Radiation of “what” and “why”? 

           I see that the second team of “theys” sent your mom on to a third group of “theys”.  So now a third team of “theys” finally decided to remove your mom’s cancerous ovary on February 22, 2016—a whole year later!

            Seems that if this could have been done laparoscopically, why the wait?  Why did “they” not perform that surgery at the very beginning, then start in with the chemo regimen?  Either way precious time elapsed in the interim.    Now I know the pattern can be either, removal of the ovary and then chemo, or vice versa.  But now it’s a moot point, isn’t it?  In trying to figure out what went wrong—and I’m not a doctor—it would appear that the cancerous ovary could have been removed at the very first.  I know a lady that has just had surgery yesterday for Ovarian Cancer, and then chemo will follow.  I’m not certain of her complete diagnosis, but I know that she has large masses on both ovaries, and they are cancerous.  Neither do I know how extensive her surgery was at this point.  I tend to think it involves far more than just removal of the female reproductive organs.  But she will receive post-operative (adjuvant) chemotherapy.

           Now we move into the month of March 2016.  Your mother’s bowels are NOT moving.  Your words, “On March 15th she began experiencing abdomen pains, on March 18th we went to the ER with massive pain in the abdomen, they immediately gave her morphine to manage the pain ASAP.”

           Allow me to point out the difference between your mom’s treatments and mine at this point.  Initially I was diagnosed in Nov. of 2012 via CT as having Peritoneal Carcinomatosis (a condition indicating that multiple large tumors were in my abdominal cavity, and probably came from another organ.)  As soon as I learned “what” this condition was, I sought a SECOND opinion at the University of Pittsburgh Medical Center (UPMC).  There, a PET/CT scan was performed that indicated cancer in my ovaries as well.  Exploratory surgery would reveal that cancer was too invasive at the time to recommend Cytoreductive surgery.  So chemo of Carboplatin and Taxol was prescribed.  I finished that regimen, and on July 1, 2013 a cytoreductive surgery (CRS) was undertaken.  During that surgery, my ovaries, fallopian tubes, spleen, gallbladder, omentum, and sections of my BOWELS were removed.  These were considered parts that I could “live without”. 

          Also in 2014, I had targeted radiation on 3 cancerous nodes in the Caudate Lobe of my Liver and that proved to be successful.  Then in June of 2015, I began having EXTREME PAIN in my abdomen, akin to childbirth.  We women know what that feels like.  So after trips to the Emergency Room two weeks in a row, my oncologist said, “You describing symptoms akin to “blocked intestines.”  So he ordered a CT scan of the Pelvis, Abdomen and Chest.  Indeed the scan showed “increased nodularity along the intestinal walls” plus increased growth in the size of the cancerous lymph nodes still present in my body. 

          So on June 11, 2015, I began a second series of the same Carboplatin/Taxol combo.  It relieved my stomach problems.  Now I know that it is only for a time.  My goal is to have long “intermissions” of “mission creep” to put it in a military term.  After all, there is a war going on between the organs and cells inside my body.  And with Stage IV, my hope is to win some of the battles with proper stop-gap treatments, but I’m not going to win the war.  That is, absent a miracle from the Lord, which He could do, but so far has not chosen to do so.

 Not every sick person on this planet is going to be healed.  God has shown His love for me in a myriad of ways, and I am committed to accepting this cancer, and prayerfully making the best decisions I can along the way.  We’ve got doctors, and then we’ve got “doctors”, and sometimes patients are not privy to the inside story of who knows more than the other one.  We all want to think we have the very best doctor so that if something can be fixed, our doctor will be “up on it”, and capable of fighting it with the latest weaponry.  But I must say that I know that successive chemotherapies are “no magic bullet”, and what works for one will not necessarily work for another.  That said, your letter raises questions in my mind about why any surgeon would wait a year to remove your mother’s “other” ovary!  It was infiltrated with cancer. 

           Once more, in my reading of your letter, I’m to understand that first Mom had chemo, then waited 6 months and had another round of the same chemo.  At that time the same oncologist was in charge of prescribing treatments, and certainly should have been in close consultation with a competent surgeon to coordinate a treatment plan for your Mom.  And during that time obviously no one thought that surgery to remove the cancerous ovary would be a good thing!

                Now the “merry-go-round” seems to have spun around in this fashion.  In late January of this year, 2016, Mom went back to the 1^st oncologist who recommended radiation.

           So the 1^st oncologist sent Mom to a 2^nd oncologist for “staging” and how to proceed with radiation.  May I ask, radiation of what?  If she was already staged at IV previously in 2015, what were they supposedly aiming to treat this third time?

           So from there the 2^nd oncologist sent your mom to a 3^rd oncologist for surgical removal of her remaining ovary!  Wow a whole year lapsed with the cancerous ovary left untouched.  My My! 

           Just wondering who is making the decisions.  Is it you, your mom, or the oncologist, or all of the above?  You say that “we agreed” and on February 22, 2016, Mom finally had the cancerous ovary removed. Okay, that was a smart move, but what about all the other cancerous tumors still hiding inside the abdominal cavity?   You tell us that she recovered well from that “laparoscopic” removal of the ovary.

           So now we’re into March and Mom is back in the garden, praying that all is well, and she can get back to normal once more.  That’s always our ultimate goal, although it takes longer for some than others to get to a point where they are actually enjoying some quality of life.  That’s the way we get through the difficult debilitating chemo and surgery, because we are taking the long look, and dream of once again “feeling like we once did” before cancer entered the picture. 

           (As to mom’s use of a cane, that’s fine.  With some residual neuropathy from the chemo treatments, it’s wise to use a cane.  I don’t use one around the house, but I also use one when I go shopping.  Believe me I don’t walk very far if I don’t find one of those mobile carts especially at large stores.  Fatigue is my companion even to this day, but I keep moving.  So neuropathy may dissipate or it may be permanent, but we usually learn to adjust.)

          Now after Mom’s surgery on February 22^nd in 10 short days (March 3^rd), her bowels stop working.   Who ordered the miralax senekot, fiber, etc. that you say your mom started?  Was that just your idea, which normally we would think was the right thing to do, or was that what the doctor ordered?    I’m wondering what the doctor told you to “expect” after the surgical removal of the diseased ovary.

           So now your poor mother has had no bowel movement for 15 days straight! Despite all efforts at relief, mom’s bowels did NOT move.  Then on March 18^th, you rush her to the Emergency Room because of intense abdominal pain.  I know that painful feeling.  My pain came from pending INTESTINAL BLOCKAGE.  As I’ve stated before, I had never had such intense pain except during childbirth.  At the ER I was given morphine to relieve the pain.  That afforded temporary relief.  But in another week, I was right back in the same fix.  My stomach was distended.  It felt like I had been “pumped up with air”.  I was in excruciating pain, so much so that I thought, I don’t know what’s going on, but I “can’t live like this.”

            Now by the second week, I had consulted my oncologist who ordered a CT scan on a Monday, and on Thursday, we had begun my second series of chemo treatments.  The scan had detailed a sizeable increase in tumor size, and “increased nodularity along my intestinal wall.”  Intestinal blockage is not uncommon with Ovarian Cancer Stage IV, and had I not consented to more chemo, I probably would not be writing this letter today.  (My oncologist felt that since it had been 2 years since my last chemo treatment that another round would most likely prove successful.)    

           But now, back to your mom’s problem.  So now a Urinary Tract Infection and C-Diff decide to “get in on the act.  Talk about a war going on inside Mom’s body, and the intense pain, no wonder she says she has had ENOUGH!    So you’re telling me that on April 2, 2016, some doctors finally reached the conclusion that your mom was suffering with a blocked intestine.  Well Hallelujah!  It’s about time!  

           You tell us there were 2 attempts by hospital doctors to restore Mom’s bowel functions, but to no avail.  I would venture to say that by this time, no wonder she developed C-diff.  (A severe bacterial infection). 

           So now ONE MONTH LATER, on Saturday, April 2^nd, the docs decide a “laparoscopic” procedure to take out a section of the intestinal wall to relieve the blockage is necessary!   So on Sunday, April 3, 2016, your poor mom undergoes another round of surgery, thinking that this will be as uncomplicated as the removal of her cancerous ovary was a couple of months ago back in February.   But no, I see that was not to be.  This “repair” required a “full abdominal opening” to gain access to the blocked intestines.  I know what an abdominal incision from the breast bone to the pubic area feels and looks like, although I don’t know how much of an incision she had.  I say, thank God, Mom didn’t need a colostomy.

           So now she is once more in a “recovery mode” here in April of this year.  I believe your description of a “torturous recovery”.  I fully understand her exasperation and disappointment and feelings of desperation!  Who can blame her for now saying, “I’ve had it.  No more pain please?”

            I can see this in my mind’s eye and feel like I’m right there in the hospital room with her, and I am agreeing with her!  I’m understanding why she is experiencing the symptoms you outlined for us in the beginning… Delirium—Confusion—Hallucinations.   Given the medications you outlined no wonder she is “not herself”, and is saying “stop—I’ve had enough pain.”  And you know what, Edward, I agree with her. 

          When I underwent Cytoreductive Surgery in July of 2013, part of it was removal of sections of my bowels.  I was only allowed “ice chips” for 10 days while I waited for my bowels to “wake up!”  That was an ordeal.  I need not go into details as to how many trips I had to make to the bathroom, both day and night, before some sense of normalcy returned relative to normal bowel habits.  So I’m understanding the frustration your mom is feeling.  But even today regularity is not always the case.  There can be periods of constipation and diarrhea that accompanies surgery on one’s intestines. 

                    Now you tell us that one week after (April 12), the open surgery, your mom’s heart monitor went bonkers.  Then the doctors started your mom on Digoxin and Diltiazem. You were smart to research these medications and I have listed some side effects from them below.  I think looking at those reactions alone could cause your mom to experience an array of “side effects”, among them confusion and disorientation and a long list of other things.  

      So now, I’m with you here on Sunday, April 17, 2016, and she is being transferred to a rehab hospital next door.    And after all this torture, you say she finally experienced her 1^st bowel movement on Tuesday, April 26^th! So in effect, your mom’s bowels didn’t move from March 3, 2016 till April 26^th.  By my calendar, that is 2 whole months and a day! ! ! Who should even question confusion, pain, disorientation and total disillusionment? 

           Now I know Mom did NOT like the smiling physical therapists greeting her at her door and saying, “Ready to go for a walk?”  Ugghh…nooooo!  After my surgery, I had the same friendly couple of therapists greeting me my hospital room door.  With some help, I managed to drag myself out of bed and take a few feeble steps down the hallway and back.  There was a person on either side of me, and of course, I’m dragging along an IV pole with me because I suffered a massive infection.  My incision broke open, and I had to have a “wound vac” for months afterwards.  Not long after that walk-down-the-hall routine, the therapists returned again.  This time they said, “Do you have steps at home?”  I hated to answer truthfully, but I figured out what was coming next.  Not only was I going to be walking up and down the hall, but I was expected to go up and down STEPS!  This was probably your mom’s experience as well.  And I dreaded every bit of it, but inwardly I knew that it was absolutely necessary if I were going to get out of there “alive.”

      Now back to Mom’s case.  From REHAB Mom was moved to a “Senior Nursing Facility” if that’s what “SNF” means.  By my calendar this means she was in rehab for 10 days and then transferred to yet another facility. 

          You don’t have to describe the level of “care” or lack thereof, in the nursing facility, since my own mother was in more than one for a time.  It is horrendous oft times.  Sometimes the nurse’s call button was clamped to the top of Mom’s mattress, out of her reach.  And try getting someone to come “quickly”…forget it.

           Multiply the number of patients divided by the number of “employees” at any facility, and unless you’re in a “Cadillac” home, there’ll be times when you just wait, and wait, and wait.  And it’s distressing to hear another patient close by “wailing” to the top of her lungs and no one seems to care about her cry.  Talk about “depressing!”  Not to make excuses, but in fairness, in all but a couple of the ones I have visited there are too few employees that are overworked and underpaid.  Now I have visited some who are not like that, but it costs a “pretty penny” to stay there, but the patients are better cared for. 

          Now I’m still on your journey, and we are now up to Thursday, May 12^th. You say while at the nursing facility, “she got strong enough to walk, use the restroom, clean herself, but it appeared she was beginning to become confused and having hallucinations.   It was a nail-biting 2.5 weeks, her confusion grew, the fear of falling was upfront because she would awake and forget where she was, why did she need a walker, etc...”

     Now you tell us that on Monday, May 30^th, mom woke you up at 4:00 A.M. She was in a state of panic, and anxiety, had slurred speech, and elevated blood pressure and pulse.  You did the right thing by calling 911 Edward.  And I have to side with your mother, and say, she had every right to exhibit all the emotions you describe.  Yes, Edward, by this time, your mom has had ENOUGH.  I know you were suffering as well because you love your mom and have given it your all, trying to find help, and now you see it has “come to this.”  You did the right thing to hire a sitter.  It’s the only way you could be “everywhere at once.” 

 Moreover, when you look at some of the side effects of Digoxin,
“changes in mood and mental alertness, including confusion, depression and lost interest in usual activities and anxiety”, are only some of many side effects.  See the list here:  http://www.everydayhealth.com/drugs/digoxin

           Added to that are the possible side effects of digoxin and Diltiazem interactions with the second medication they prescribed for her heart.  http://www.everydayhealth.com/drugs/diltiazem - “…Diltiazem Side Effects”

 And before that she got a bad bacterial infection while she was in the hospital.  See the effects that C-Diff can have on the body. http://www.mayoclinic.org/diseases-conditions/c-difficile/basics/definition/con-20029664

           The hospital scans revealed why mom was feeling the way she did, although she couldn’t put it in words to you.  The scans and x-rays revealed that the cancer was now spreading to her kidneys and her liver.  Since you say sometimes she doesn’t know where she is can certainly be explained by the cancer now ravaging inside her body.  I know how it is to get a phone call and hear the words, “Your husband has cancer!”  So I am putting myself in your shoes, as a loving son and only caregiver, because I was caregiver to my husband during his cancer diagnosis of Esophageal Cancer, Stage III, and subsequent pre-op treatments, then surgery, and now remission lasting 14 years now.  It’s truly a miracle for which I thank God.

           But now as a Stage IV Ovarian Cancer woman, age 77, I am now putting myself “in bed with your mom” and I’m empathizing with her.  By the end of this sorrowful saga, “I am agreeing with mom.”  And I think she means it when she says, “I’ve had enough, Please no more pain.”

           At this point, there’s no need to tell her the “real prognosis and extent of her cancer.”  No Edward, let me be honest with you.  It isn’t just the pain of the past four horrendous months that have enhanced this condition as you’ve described it.  It is the ravages of cancer that is spreading to other parts of her body that will not be controlled by chemo, or surgery.  Reading your pitiful story literally has brought tears to my eyes. 

 I’m on a similar journey.  Cytoreductive Surgery was NEVER going to cure my cancer, it was only supposed to give me some additional quality of life, before the cancer flared up again in even more organs.  And my latest CT last week indicates pleural effusion, and a slight increase in the cancerous tumors that still live within my diseased body, but no new metastasis.  (That’s a blessing.)    And right now I am in a “holding” pattern.  But I will have to make the same decision that your mother has made.  You would do well to let her make it, Edward.  She is the only one that can make that decision.  There will come a time and only God knows the date, that I, too, will say, “Enough is enough.” 

          You have asked for our thoughts, and I have taken you seriously.  You are truly not knowing what to do and I understand the position you’re in.  It is an agonizing one, but put me down as one who would say, it’s time to enroll your mom with a good HOSPICE team, and let her live her last days with no more surgery and no more chemo.  You have done all you can do, and she has suffered all she needs to suffer.  I’ve heard nothing but good things about HOSPICE care, and one day, I will enter that stage of life myself. 

      You’re wondering if this is an early sign of mom “checking out”.   I hear Mom saying “I’ve suffered enough, don’t subject me to anymore hospitals and doctors and medicines.   I just want to die in peace with as much dignity as I can.  I want to be in my own home, and have my family nearby.”

           Edward, I’m not there yet, but I’m on my way.  I always have to say as a child of God, Psalm 139 gives me great comfort.  There David says to the Lord, “Where can I go that You are not already there?  I can’t hide from You.  You even saw me when I was being “knit together” in my mother’s womb.  And in Your book, all the days of my life were written when as yet there were none of them.”  That’s paraphrased, but I truly believe that I am not going to die one day sooner than an omniscient God has allotted for me on Planet Earth.  And I truly believe that though my body will lie in a grave somewhere, I’ll be transported to Heaven on angels’ wings to see the Lord face to face.  I’m taking the long look.  We don’t get to call the shots down here, and often our best efforts to survive are met with futility.

            As the old Kenny Rogers song, the Gambler, goes “…you’ve got to know when to hold ‘em, and know when to fold ‘em, know when to walk away, and know when to run”.  That’s a decision that I, and your mom, with God’s help will both have to make.  And yes, my husband will be heartbroken, but we’ve talked about it often, and he and my family know exactly how I feel.  So when my time comes, no one will try to persuade me to “give it one more try.” 

 (End of part 1 of 2)