March 31 - glioblastoma multiforme progression

My dad is awake...but unusually quiet today. He is also taking in almost no food/water today. I have that "kicked in the stomach" feeling...I used to be able to tell when it was a sense of something bad happening...and when it was my own anxiety. These days....I have no idea which it is. All we can do at this point is take it an hour at a time.

March 31 - glioblastoma multiforme progression

Yesterday was an uneventful/eventful day for my dad. He was awake quite a bit…though quieter than usual. His voice only a whisper, and his food intake getting lower each day. At this writing, he is only taking 3-4 bites of baby food a day…and a few sips of Ensure occasionally.

He isn’t moving much now...everything from whispering to moving his arms takes so much effort that it exhausts him.

The weather took a nasty turn yesterday…a spring storm moved through and severe weather alerts went out. My dad’s hospital bed is directly in front of a very large picture window that overlooks the side yard. In the beginning, he enjoyed watching the wildlife out the window…all kinds of birds, squirrels, rabbits, turkeys, and of course neighborhood dogs and cats. He is mostly unaware of those things now...but it is still a more cheerful place to be than in a bedroom...and during the days when he is aware...it allows him to be a part of the goings on of the day.

The weather yesterday included a high wind warning…and large hail. At this point, it would be almost impossible to move him to safety quickly. So, the decision was made to close the blinds over the window and roll the bed to the opposite side of the living room, in order to keep him safe. Extra blankets were rounded up in case things got really rough, so that they could be put over him to protect him from glass/debris.

The hail came and went twice…but no damage was done to the house, and everyone is safe.

He was aware of the tension…though I’m not sure that he realized why. By 9:30 p.m. the storms had passed and he drifted off to sleep.

He slept all night, and is still sleeping this morning.

March 29 - glioblastoma multiforme progression

I wrote this a month or so ago. I just ran across it again this morning...even more true as time goes by on this ugly journey...


My plea today...

Ugly whispers on the wind…
Change is coming once again.
Days are sliding quickly by…....
Clouds now darken once blue skies.

Helpless, hopeless…anxious times…
Our reach becomes a withering vine.
Piece by piece…we watch him go…
For how long…no one can know.
Words and memories failing fast…
Yellowed, faded photographs.
And now we ask…in quiet tones….
For grace and peace as he goes home.

March 29 - gilioblastoma multiforme progression

Last night was a hard, restless night for my dad. He became very agitated about 4 a.m. and after about an hour finally began to relax again…just in time to completely soak the bed. He and the bed were changed quickly…but he was agitated again. He was finally able to relax again around 6 a.m. and is still sleeping now.

The hospice nurse says that what he is experiencing is called “End Stage Anxiety”. It is part of the progression of things…and she cautioned us last week that the time would come very soon when the medication that we give him for anxiety…will no longer help. I believe that time is here. The last several times that he has become agitated…it has taken a double dose to calm him...and even then it took a long time to work.

We continue to be thankful that he doesn’t appear to be in pain. Although I do question his ability to communicate pain to us…if he were in pain. His appetite continues to decline. He is only taking a few bites of baby food now…then clamps his mouth shut.

His strength is completely zapped by even the smallest things…such as waking up…reaching for someone’s hand…trying to speak. His voice is mostly only a whisper.

His body shows the effects of all of this…especially recently. He has always been in very good physical condition…and very muscular. He worked hard and played hard…very seldom idle. He has lost a ton of weight…and the skin on his arms and legs hangs…all muscle tone gone.

March 28 - glioblastoma multiforme progression

The weekend wasn’t a great time for my dad. On Friday he had another seizure while my step mother and the hospice aid were bathing him. It didn’t last long…but it wore him out. Saturday he slept a lot…but when he awoke, he seemed more lucid than he has been for quite a while.

When we arrived on Saturday morning, my step mother told me that he had told her that he didn’t mind dying. She was somewhat taken aback by him saying that…because it was sort of “out of the blue”. She asked him if he was afraid…and he smiled and said “No…” He then fell asleep. She went into the bathroom and sat and cried for a while. When she told me what he said…there were more tears all around. 

I was sitting by his bed an hour or so later…and he reached up…cupped my face in his hand and looked at me and smiled…and winked at me. He held my hand a lot on Saturday…and he squeezed it repeatedly. Then he told me that he was dying.

We can’t help but feel that he has made peace with what is happening…and is letting go. One part of me knows that that is a good thing for him…but the other part of me is heartbroken. And… as so many other things do…it also makes me flash back to a conversation with mom…not so long ago. She had made the decision not to have heart surgery. That decision was in effect…her letting go. I was sitting with her a couple days later and she said, “You want me to fight…to have the surgery and keep fighting don’t you?” I took a deep breath and replied, “I do mom…I do. But I will respect your decision. I’m not ready for you to leave us…but I will stand beside you…whatever you decide.” She smiled and said “Thank You.”

I hate that memory. My heart wishes that I had gotten angry and demanded that she have the surgery and keep trying. My brain knows that even if she had had the surgery…she was also in End Stage lung disease…and there were multiple other issues that could not be treated. She would not have survived more than a short while longer anyway….and there was doubt that she would survive the surgery and recovery as well. She chose to let go…she was tired. Now he is choosing to let go…he is tired. And lately…we are all so very tired.

March 25 – glioblastoma multiforme progression

Today is my dad’s 80^th birthday. We did not think that he would see this day! He appears to be having a good day today…albeit very quiet and sleeping a lot. He has no realization of what day it is…but he has received birthday gifts through the mail…and his sister-in-law baked him a chocolate (his favorite) birthday cake. Unfortunately, he is no longer able to swallow the cake…but perhaps he will get a taste of the frosting.

 Every once in a while…a bit of humor comes at just the right moment. This happened yesterday…my step mother has been giving him small amounts of baby food, and Ensure…which he has taken successfully so far. She had been giving him vanilla Ensure…and yesterday she changed to strawberry. He tasted it…and made a bad face…then turned his head away. She laughed and said…”Sorry honey…does the strawberry taste bad?” After several seconds…he very haltingly replied…”it….tastes…like….” then stopped and seemed to be struggling to think. A few more seconds passed and he suddenly got hold of the word…”shit!” She added chocolate syrup to it…tried it again…and he smiled and swallowed it!

Yesterday marked six months since mom passed away…it still feels so fresh…like it was yesterday. I miss her so much! There are so many things that I wish I could talk to her about…so many things that I wish that I had said to her. I thought the pain would get easier…but so far it has not. I still think about her every single day…and the tears still come. I am struggling today…

March 24 – glioblastoma multiforme progression

Today seems to be another good day for my dad. He is sleeping more than he has been…but is still awake off and on… and calm. He doesn’t seem to be having any pain…although…I wonder from time to time whether he could express it if he were. The hospice nurses say that if he were in pain, we could tell by agitation and facial expressions. Yet…when he was experiencing extreme agitation…they assured us it was not due to pain.

I think that…even though they are healthcare professionals… and absolutely have a greater knowledge of what is happening than we do…there are still areas where they are guessing as much as we are. After all, when the patient becomes non-communicative… responding only with one word answers (that don’t even relate to the question or situation most of the time)…who can possibly know what is going on inside their minds? Who can guess whether a period of agitation or a facial expression indicates pain…or whether perhaps the patient is experiencing an emotion from a fleeting, past memory…or frustration because they can’t communicate properly… or any of a dozen other possibilities?

Tomorrow is dad’s 80^th birthday. I did not think that he would see his birthday…but barring any issues between now and tomorrow (which at this point…are totally possible), he will. He doesn’t appear to be aware of much…and still doesn’t recognize anyone…so sadly…he most likely won’t know that he has hit this milestone.

March 23 – glioblastoma multiforme progression

My dad is doing well today. He slept all night long and today has been a repeat of the past two days. He is awake more than he is asleep…and when he is awake, he is responsive. He only responds with one word…or a smile…and does not initiate any conversation. He is not able to stand…but is able to help my step mother transfer him to the wheelchair and back to the bed.

He is feeding himself small meals…a few bites here and there… it is nutrition none-the-less…and he is taking in minimal amounts of fluid by mouth. He is also still taking his regular medications.

His 80^th birthday is on Friday (March 25^th). I am almost afraid to speculate about whether or not he will still be with us. The past couple of days would suggest that he will be…but things tend to change with the wind. We do have a weather front moving across Kansas tonight…and I know that changes in the barometric pressure can impact sick and elderly people. I don’t know whether this will be an issue…I hope not.

We continue to be thankful that he isn't in any pain. Some days are harder than others...because I see him reduced to the words and actions of a toddler...and I know that if he was not so affected mentally...it would kill his spirit to be this way. Perhaps it is a small kindness that he is unaware of his situation.

 

March 22 - glioblastom multiforme progression

After an unbelievable rally yesterday, during which my dad took a shower, and ate banana, toast, and drank Ensure...he had to be given a dose of the morphine cocktail...due to a sudden onset of extreme agitation.

However, he slept all night last night, and held my step mother and patted her on the arm this morning. He then sat in the wheelchair and ate a bit of eggs, bacon, and drank a bit of juice.

By 11:30 this morning, he was really tired and she helped him back to bed...where he has been resting comfortably.

She has been able to give him all of his previous meds (steroids, anxiety meds, and anti seizure meds). So far today he has not had to have any of the morphine cocktail.

He has been doing so well today, that she was able to let his brother sit with him while she ran to the grocery store.

This is nothing short of amazing.

March 21 – glioblastoma multiforme progression

Saturday proved to be an awful day for my dad. His condition was dire when we arrived. He was non-responsive for the most part. Occasionally his eyes would flutter open…but they appeared to be glazed over…and he didn’t seem to actually see us most of the time. He had been urinating about every hour…and shortly after we arrived…began to urinate every 25 minutes or so. He had had no fluid input for 24+ hours. He was unable to swallow…so he had not been able to have any of his seizure medication....which was a big concern.

The hospice nurse had been called…and told it was not an emergency…so it took several hours for her to arrive. When she did get there…her assessment told us that it was as we suspected. His condition was the natural progression of things at this stage.

She brought some more meds from the comfort pack…and instructed my step mother on how to give them. She then said that at this point, administering any of his meds except the comfort meds… (Ativan/morphine) is really not important…and if he chokes in the attempt…he could aspirate and complicate matters more.

His vitals are still very strong…so he could conceivably be at this stage for quite a while. We are thankful that he still isn’t in pain.

He roused around late Sunday evening, and managed to drink almost a cup full of water, and a partial cup of Ensure…and eat a small tub of baby food fruit. Then he became so agitated that my stepmother had to give him the Ativan/morphine cocktail. The Ativan is in pill form, so it is mixed with a measure of liquid morphine, then drawn into a syringe and given orally…a few drops at a time.

He slept all night, and is still sleeping this morning.

I had a moment of…flashback sort of panic…as the nurse began to tell us how to mix the morphine/Ativan. The morphine sulfate is also referred to as Roxanol. It is often given at the end of life as a comfort measure. Back in September…as we stood around mom’s bed during the last hour of her life…they had already given her a couple of doses of Roxanol… and the nurse stood by with another dose in a syringe as mom took her last breaths. I will never forget that moment. We were all sobbing…and mom began to vomit a bit as she passed away. My sister pleaded with God to take her…fearing that mom would endure the vomiting consciously...and maybe choke and die horribly. I wiped it away as it came out…and talked softly to mom… stroking her hair and face…reassuring her that we were all there with her…and that we loved her…as did my brother on the other side of the bed. It is amazing what the human mind does with things…all of that sudden…painful moment…flashed back at the mere mention of one word…Roxanol.

March 18 – glioblastoma multiforme progression

 

Dad had a bad night last night. He was extremely restless…thrashing about…babbling…etc. and up three times to be changed. My step mother gave him the anxiety meds… but they had no effect.

He awoke around 9:00 am this morning…and was shaky…and unable to feed himself or even hold a glass. Also unable to stand or do any of the things that he has been doing.

His brother, sister-in-law, niece, and daughter came to the house around noon. They brought baked potatoes and toppings with them. He ate nothing, and promptly fell asleep and has slept through all of the conversation and noise around him. He roused a bit a few times to push the covers around…but wasn’t able to acknowledge anyone.

I hope this is just a bad day…but it is frightening. His 80^th birthday is next Friday…so I had planned to stay home this weekend and go next weekend (it is a 3 hour drive one way), since he has been doing so well. However, with this change in things…I will be going tomorrow morning.

March 17 - glioblastoma multiforme progression

Dad was awake 3 times last night...each time due to needing changed. Sometimes it is almost as though his body has been holding urine...and suddenly lets go of all of it in one night. The odd thing is that he does not appear to be retaining fluid before hand.

He was able to feed himself breakfast this morning, but went back to bed earlier than usual for a nap...he was very tired.

He doesn't seem to know people again today...but is very happy and content...which is wonderful.

All in all...a good day!

I am going to do my best not to question why he is having this sudden improvement...and not to worry about the "what if's" or "maybe's". It is what it is...and it is beyond our control. My own anxiety has become almost unmanageable...so I am working toward some solutions...such as what I just stated...in an effort to more effectively deal with all of this. I am also back on track with walking (which has always been a stress buster for me). I had gotten away from it for a while...mostly due to weather. I realize now though that being a bit cold or wet occasionally is a lot better than the emotional tornado that I have been experiencing. I have also been taking the mild sedative that the doctor gave me for anxiety when we went through some of these things with Marvin's mom...then with my own mom...just a short time ago. Just a couple of days ago, we went to dinner with my son and his partner. After dinner we were at the check out...and I had a pretty hefty panic attack. I ended up walking quickly away and trying to focus my attention on the items for sale in the front of the restaurant in order to get a hold of myself. I was somewhat successful...until an hour later at home. I ended up taking an extra 1/2 dose of the meds that night in order to finally calm down completely. That was a pretty good wake up call. I intended to go to the doctor the next day...and request an anti-anxiety med...but then I started to realize that I need to first put my whole effort into the things that I know may help. If I am not successful...then I will make an appointment.

March 16 - glioblastoma multiforme progression

Dad had a great night. He slept last night without even stirring until 10:00 this morning. The hospice aid came and assisted him with a bath, after which he remained in the wheelchair for several hours. The ramp that my step mother wanted proved to be  very expensive...due mostly to the required length in order to make it navigable. So...my brother affixed a ladder across the opening from the back porch to the yard...with a variety of bungee cords, in order to make it impossible for my dad to roll off of the porch in the wheelchair, or stumble off...should he attempt to stand.

The result is that it is now safe for him to spend some time outdoors. They were able to eat lunch on the porch and sit outdoors and enjoy the warmth of the day. I know he enjoyed it...though he can't express that joy except for a wide grin.

So far today he is doing well...down for a nap at this writing...and exhausted but happy. The agitation seems to remain under control...which is wonderful. He is still somewhat able to feed himself...but must be watched as he occasionally tries to do odd things with his food.

I am still amazed at the recent reversal of many symptoms...but I am glad for each good day that he has. I continue to be skeptical about how long this change will last...but at the end of the day...it is best to take things an hour at a time...and be grateful for each day that he does well.

March 15 - glioblastoma multiforme progression

My dad had a good night...he slept through it and awoke around 9:00 a.m. This is also new during the past three days or so. He had begun to sleep until at least 11:00- noon most days.

I have been searching again this morning for some reason for these amazing improvements. Perhaps I am becoming jaded by past experience. But...we can only be what we are...which is the sum total of our experience and knowledge...however limited or vast either may be.

I want very much to believe that the tumor is in remission through some miracle...or that maybe the diagnosis was wrong and he is getting well...but as much as my heart wants these things...my brain keeps telling me not to be duped.

If you are reading this and have any experience with this sort of tumor...and can offer any insight...I would appreciate hearing it.

March 14 - glioblastoma multiforme progression

My dad has had an amazing 3 days. His strength, awareness, etc...have taken an incredible upturn. He is able to stand with help...is making an occasional remark or response that makes perfect sense...and has fed himself several times.

I am very much afraid that this is not actually an improvement...but instead...a rally before the end. I have been unable to find anything on google about  any sort of "rally" with this type of tumor...however...mom rallied the weekend before she passed away to the point that I believed she was getting better. My adopted dad rallied the day before he passed away to the point that we called to order a hospital bed and other equipment in order to make him more comfortable at home...totally believing that he was improving.

In my experience...this kind of rallying occurs often. It is breaking my heart...again... My step-mother is convinced that this upswing is wonderful and intends to hire someone to build a ramp so that she can manage to take my dad into the yard as the spring progresses. I don't have the heart to turn her hope into my fear...by telling her that I suspect the end is near...because of this sudden increase in all of the good things.

March 11 – glioblastoma multiforme progression

 

My dad had a pretty good morning yesterday. He sat in the wheelchair for breakfast, and was enjoying it enough that he remained in it until just after lunch. He puttered around the kitchen and living room a bit…touching things...reading magazines upside down...and seemed content sitting in front of the patio doors watching the squirrels and birds in the backyard. Just after lunch, he began to be agitated…and once it began, it escalated quickly. He had to be given another dose of the new anxiety med. An hour or so after the meds, he finally relaxed and was moved to the bed where he took a nap.

He awoke three hours later…seemingly bright eyed…but not agitated anymore. I tried briefly to speak to him on the phone…but he wasn’t able to make sense…and couldn’t figure out who I was. My step mother took the phone back and within about 2 more minutes…he became agitated again and tried to pull himself over the side rail of the bed while mumbling incoherently.

Later in the evening, he had more of the anxiety meds (just before bed), and although he did sleep…it was very restless.

Whatever is happening with the tumor…is apparently escalating the anxiety.

My stepmother’s daughter and son are coming around noon today to spend the weekend with them. They have not seen him since Christmas...I’m sure the change will be shocking to them.

March 10...glioblastoma multiforme...progression

 

Yesterday started out good for my dad…then during the afternoon he became agitated again. The new meds that he is on have been controlling the agitation with ½ dose…but yesterday the 1/2 dose had no affect, and he had to have an additional ½ dose. He did sleep all night last night…but talked all through the night in his sleep as well. It sounds like the agitation may be escalating.

His appetite is swinging back and forth between moderate and none. He has always been a very light eater... (splitting a hamburger/sandwich with someone for lunch etc.), but within a month after diagnosis...his appetite increased tenfold...and a week ago...it dropped to almost nothing. He has always had a huge sweet tooth as well...often making fudge in the middle of a summer afternoon...just because he loves it. But...a month or so ago...he lost his sweet tooth entirely and began to turn down candy, cake, etc. These changes were among the most remarkable initially, with the exception of the confusion and short term memory loss of course.

 

March 8 - glioblastoma multiforme progression

Yesterday was not a good day for my dad. He was plagued with anxiety and agitation all day…talking nonsense to the air…picking at unseen things…restless legs…and grabbing the bars on the bedrails every few minutes and banging them back and forth. His eyes were drooping with exhaustion…but his body would not relax.

The Hospice nurse came late morning, assessed him and pulled a new medication from the comfort bag. Within a few minutes, he was beginning to calm down. This will now be given morning and evening to help with the agitation.

He has had bowel issues for over a week now…and so far there is no resolution. Yesterday when the nurse listened to his abdomen…there were almost no bowel sounds. The nurse doesn’t know if this is a result of constipation…or if his bowels are shutting down. They have been giving him a laxative for three days now…with no results. Twice the nurse has attempted to empty his bowels manually also with no success. His bladder has been going back and forth between dumping unbelievable amounts of urine…to going for days with almost no output.

On top of everything else…he has now developed a bad rash on his back. It doesn’t seem to itch or bother him…but the nurse took pictures and emailed them to the doctor in Wichita to determine how to best treat it.

As a side note…today is my birthday. I am fighting the worst depression/anxiety that I have had in a while today. Getting older doesn’t bother me at all…I have always believed that age is just a number…we are as old as we want to be. But this year…mom is gone…and dad is going very shortly. It just feels wrong. I don’t really have a celebratory bone in my body today….and I have been close to tears since I woke up this morning.

 

 

Anxiety...

I am desperately trying to manage my anxiety without further medication. I am taking valium as needed right now...but can only use them at night because they make me really sleepy. Unfortunately, my employers find sleeping employees...irritating at best.

It seems that managing it with exercise or meditation or something along those lines would be best at this point...since I know that it is situational (currently brought on by my dad's illness). His tumor diagnosis...so closely on the heels of mom's death...is proving to be almost more than I can handle.

My anxiety level today is palpable. I feel as though tingles of electricity are jolting my hands and arms occasionally...and although I am NOT having chest pains...my chest is tight and my whole body is tense. I have been fighting tears off and on all morning as well.

The log...March 7, 2016 - glioblastoma multiforme progression

We are currently continuing on a journey of loss and heartache. I decided to start a log here...in hopes of relieving some anxiety through writing about things. I wish that I had thought of doing this during my mom's illness last year. Perhaps what we are going through may even help someone else realize that they are not alone. I hope so.

On September 25, my mom passed away…after a lengthy illness that included congestive heart failure…colon issues…stomach issues…COPD…a broken hip…and numerous other problems.

 On November 3^rd, my dad was diagnosed with a stage 4 Glioblastoma Multiforme tumor…which at that point was already the size of an orange (in area). Due to his advanced age (79 years old) and the size and extent of the tumor…he and his doctor and the specialists determined that the best course of action…would be no action. They told him that he would live another 3-4 months…we are now at 4 months and 3 days.

The first 6 weeks or so brought small, gradual changes. His short term memory went first (sporadically), then his balance (also sporadically). His ability to drive was curtailed immediately, due to the event which originally caused his diagnosis. He had gone to deliver a cake to the pastor. He never arrived with the cake, and after a frantic search, he was finally located, several hours later, at his brothers home. He had forgotten where he was going…and decided to visit his brother. However, he remained mobile, still attending church, interacting with family and friends, attending to customers in his RC hobby shop, and working in the yard. He was taken off of all of his previous medications except the one for reflux…hospice came in and prepared meds for comfort care…and a strong steroid was begun…which kept some of the memory and balance issues minimal for a while.

Over the course of a two week period, he began to experience nausea, had a couple of bad headaches, (both the headaches and nausea were controlled immediately with medication), and incontinence became an issue.

One evening he had a seizure, while eating dinner out with his wife and friends, and things have escalated since. After the first seizure, he was put on a seizure medication, which worked well for a while, then he had a very rough seizure one night, followed by two more the next night. Meds were increased, and although seizure activity seems to be controlled again…other symptoms have increased dramatically.

For the most part, he no longer recognizes us…with the exception of his wife. He is extremely confused now…unable to walk…his appetite is dwindling…no control now over bowels or bladder, and becomes agitated at the drop of a hat. He becomes obsessed with repetitive motion, and he moves back and forth between non-communicative and talking jags which make no sense…

A hospital bed was brought in last week, and installed in the living room, in front of the picture window overlooking the side yard, in order to make it easier to care for him during the night…and to allow him to rest during the day without being isolated to a bedroom. In the week since the bed was brought in, he has become unable to feed himself (except for finger foods) and will soon be bedfast. During the past 24 hours, he has begun to try to escape the bed….even though the side rails are up and locked. He scoots to the end of the rails and tries to squeeze between the rails and the foot of the bed. If he does manage to get out…he will fall…as he can no longer stand.

His agitation escalates quickly once it begins, and he is now on anxiety meds every 4 hours…and as needed when it begins in spite of the meds.