I’m Not Dead Yet (I.N.D.Y.)

The Hospice team met last Thursday with Mary Beth and Merle’s mother Sydney to discuss Merle’s next step related to inpatient vs. home care. They decided that Merle should remain at the facility indefinitely. While Merle continues to show determination (sprinkled with a bit of stubbornness), his steadiness and mobility have continued to decline.  He is interactive and communicative some of the time however at other times he is also confused and hard to understand. His energy is weakening but his spirit is strong.

Merle has had a steady stream of visitors and received many cards, all expressing thoughts of support and well wishes. Merle’s mom is staying with the family indefinitely, his sister Marjie and brother Diney (me) have been down for the last few days. Marjie leaves today and Diney leaves tomorrow. More family visited yesterday Reid and Yaniv and more visitors are scheduled for the upcoming week.

Lots of friends are helping Mary Beth with family and general day to day goings on. I know she is very grateful and appreciative for your support. She is trying to maintain some normalcy for the children (as much as possible) during this very difficult time.

Merle, We all love you…. from Diney (Merle’s brother)

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Merle’s team of doctors, nurses, social workers, et al. met on Thursday and have decided that Merle should remain inpatient.  It is still possible he will come home for a brief visit, but he is probably going to stay primarily inpatient for the duration.  We are unsure about the safety of letting Merle come home without someone watching him (and not distracted by kids or chores) 24/7.

Merle has still has periods where he is mostly lucid, although even then he often has trouble finding the words he wants to say.  The majority of the time, however, Merle is extremely confused and he spends most of his time sleeping or laying in bed seemingly unaware of what is happening around him.

He is nonetheless still Merle: stubbornly independent and determined to “do it himself.”  He dislikes the fact that he needs help to stand up or walk and will try to do so without help, which has led to some thankfully minor cuts and bruises.  He refuses to call the nurse for anything, although he

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After a rough night Friday, Merle has settled in to the hospice and seems comfortable there. He still has a lot of edema in his belly and his legs, making it difficult for him to walk, but it has improved now that he is in the hospital bed with his legs up for most of the day.  We take short walks around the facility and in its garden a couple of times a day to keep up his mobility, but he is resting 20 plus hours a day.  He is very jaundiced from liver failure, and the combination of dehydration and jaundice makes it  difficult for him to focus or express a rational thought.  His pain seems well controlled by the morphine pump he is now on, though.

Our family is coming down to help out with managing things here.  My parents came Saturday and will stay until Wednesday.  Merle’s mom came today and will stay indefinitely.  Merle’s sister may come Thursday for a few days.  Merle’s brother is coming Friday for the weekend.  The plan is to have one adult with Merle to make sure he does not try to get up by himself (he is very unsteady on hos feet) and one adult with my kids at all times.  Between family, church friends, CDC colleagues, BSA friends, and others this plan seems to be working well.

The plan is for Merle to stay in hospice for 1 week for evaluation, and then he may be able to come home for a while.  They are trying to get some of the fluid off, re-evaluate his medications,and make sure his pain is under control.

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Merle has indicated he would like visitors and cards.  He is not up to talking on the phone now, however.  The address for the facility is:

Andrew T. Parker Hospice House

2160 Fountain Drive

Snellville, GA 30078

room 102

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Merle’s mental and physical health have deteriorated rapidly over the last two weeks, and he is entering hospice today.  He has developed severe edema because his body is not absorbing protein so his vein walls have become permeable.  As a result his legs and abdomen are very swollen with retained water.  At the same time he is suffering from dehydration because there is too little water circulating in his blood.  This imbalance in his system makes it hard for him to walk and worse of all has led to trouble concentrating and alot of confusion about where he is, what day it is, who is with him, etc.  (Hence, I, MaryBeth, am writing this entry.)  We saw Dr. Kauh this morning and he recommended Merle enter inpatient hospice to evaluate his needs.  He may come home again depending on how things progress.

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Advocacy days for the Pancreatic Action Network has come and gone.  We got to talk with some of our leaders and everyone seemed receptive to our message: We need the National Cancer Institute to develop a strategic plan (logic model) describing how NCI is going to deal with the increasing prevalance of the most deadly cancer.

MaryBeth insisted that I ride in a wheelchair because of all the walking and despite my grousing, she was right.  I was exhausted just talking at the 5+ meetings we had.

I found that I was in a unique position at Advocacy Days this year.  I am a survivor, but I think I was the only survivor there who was also dealing with an active  recurrence of the disease.  I’m not sure people knew exactly what to do with me.  Do they say congratulations on beating the beast or , “You did it once, you can do it again!!’

The content for the Advocacy Days was essentially the same as last year: try to get you legislators to agree to cosponsor either the house or senate version of the Pancreatic  Cancer Research & Education Act.  Exciting this year is that we got to meet with several of our congressional members rather  than their legislative assistants.

On the health front, it’s just so disappointing that I NEEDED a wheel chair while in DC; or help carrying the bags up t my room.   I said this once already, this round of fighting PC certainly  makes me feel like a cancer patient (but I’m certainly not ready to die yet).  As in the beginning, though, my game plan is pretty much the same:  Take each day and live life to its fullest.  Spend lots of time with the family making memories (and then on the yucky side, MB and I need to do a better job preparing for the future — transitioning from my paying bills to her doing so.

More later

Merle

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Friday, I had an appointment with Dr. Byas-Smith, who is in charge of the Emory pain management unit.  I spoke to him about the pain in my abdomen and lower back, but also the pain associated with the my edema and the pains in my shoulders..  No one seems terrible concerned about how much water I am retaining.   I have been wearing compression stockings, which help to minimize the swelling of my feet, legs, and thighs.  Unfortunately, when fluid is forced out of one area of the body, it looks for another resting place.  At the risk of sharing too much information….my scrotum has been filling with fluid and by the end of the day, I have a grapefruit sized scrotum.  I have mentioned this to my doctors and they have been indifferent; having some concern about giving me medicine to deal with the edema (because I had been having difficulty staying hydrated).  the Edema is affecting my quality of life.

My shoulder pain is another issue.  From my belly button and lower, I have plenty of fluid.  My upper body, though, is skin and bones.  Dr. Byas-Smith essentially said that my should pain is attributable to a lack of muscle growth.  So another thing i will discuss with Dr. Kauh is perhaps him prescribing some physical therapy (because right now, I am taking 1/2 tab of Methadone for long term pain management and Lortab for breakout pain).  We shall see.  I don’t have an appointment to see Dr. Kauh until 6/23, so I’ll be sending an Email (to which he often resounds to quickly).

In the meantime, MaryBeth and I head to Washington, DC to participate in the Pancreatic Cancer Action Network Advocacy Days.  It will be nice to have some time alone. That notwithstanding, I recall last year meeting several survivors of multiple recurrences.  Maybe hearing their stories will help regenerate how I have been feeling.

More Later,

Merle

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You know the trip to the beach last week went very well.  It was to great see MB’s brother and sister and their respective families.  But I quickly learned that my ability to tolerate long days out walking about and sight-seeing are much more limited than they used to be.

Everyone arrived on Saturday, so Sunday was our first big excursion was to a botanical gardens and betting zoo.  Tuesday (for me) was more resting than anything.  Also, on Tuesday, several members  went beach fishing.  Wednesday, my sister-in-law’s husband went home and we most hung out at the resort pool.  Thursday was exciting; we went shopping (yeah!)  and then I ordered 1/2 bushel of local crabs  (blue crabs to be sure).  I lost tract of how many I ate, but suffice it to say that it was a lot.  The weekend started to slow down; indeed I slept from 11a to 5p Friday afternoon.

I do not like not having the strength to do thinks that, but even today I am feeling rather run down.  So  it was a good visit with family, but my self-realization of my limitations just is further reminder about the progress of my disease.

Getting sick(er) sucks.

Me

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My last post was full of downers of self doubt and sadness, so I thought I would post something upbeat for the holiday weekend.  My family is vacationing with MaryBeth’s family (parent’s, siblings, sibling’s spouses and most importantly for MaryBeth, sibling’s newboarn infants).  MB loves to hold and play with babies, so she has a 2 to keep her busy this week.  It’s was great to watch her with them yesterday as she had a HUGE smile on her face just holding the baby and letting it fall asleep in her arms.

Healthwise, I met with Dr. Kauh on Thursday.  The news wasn’t great.  Essentially, we both agreed that I have worked through 3-4 treatment regimens to slow down or stop my tumor growth and nothing has really worked.  My tumor is now a cm smaller than the original tumor and is growing around and getting tangled up in some very delicate arteries.  Dr. Kauh is going to get me into a Phase IB clinical trial which will look at the potential efficacy of a new drug for treating cancer (they are not sure exactly which cancer it will help: pancreas, thyroid, or lung).

The hope is that this experimental drug holds some promise, but if now, the next step would be to set up home hospice care.  Essentially, the hospice workers deal with the issues surrounding people who are dying (not that I am planning on doing so in the near future, mind you).  Instead, they would come by daily (or more if needed) to check on me, provide medication as needed and all in all just be supportive of the transition we are going through.  One benefit is that MB would have to worry less  about taking care of me, as the hospice nurse would be able to take on someone of those duties, leaving MB and I more time just to enjoy being together.

A friend of mine, with whom I was talking about this yesterday, boiled it down for me.  If the Phase IB trial doesn’t work, we’ve essentially exhausted palliative treatment for me.  I have no sense how this will affect my prognosis, but truth be told, I have too many trips and plans in the works for me to die any time soon.

Next month, MB and I are traveling to DC for PanCan Advocacy Days.  I was going to go by myself, but MB felt it would be helpful to have someone there to look after me (not to mention that she is committed to the cause, too).  In July, the family and I will be flying up to NJ to visit with my mother and attend her annual blue berry festival.  For those who are long time readers of this blog, you may remember that Mom owns a blue berry farm, and she has a party each year at which she invites friends and family members to come pick blue berries and enjoy in some revelry.

In August, MB and I decided to join my family in Wildwood NJ for the annual Hamburger family get together.  We have been unable to attend for years and years because the trip to the beach occurs the week after school starts for our kids and we couldn’t see pulling them out of school to go to the beach.  This year, however, given the situation, we thought we could pull the kids out so that we can all go join my family and my step mother’s family at the beach.  Sometimes special circumstances call for special action.

So as you can see, we have a lot to look forward to over the summer.  I’m getting excited about all the stuff coming up.  And we are doing all this to continue to make memories that my kids can have of me when I am still generally healthy.

This past week was horrendously busy.  It doesn’t sound like a lot, but I worked extra long days for much of the week and I am exhausted.  Last night I think I ended up going to bed before 8p because I was so tired.  I hate that my disease continues to affect me so that even simple tasks (working, driving, etc.) wear me out.  I am so glad that my supervisors at work understand my situation and have encouraged me to take care of myself (e.g., work for a long as I can and then go home).  It is hard for me to accept the reality that things are only going to get worse, with me having less and less energy which will impact all aspects of my life.  I miss being more involved in Karate and Scouting, but I just do not have the energy to do either, really.

As much as this posts sounds like I’m complaining, I’m not.  I getting used to my “new normal” reluctantly.  I’m getting used to it, but that doesn’t mean that I have to like it.

Sorry for the long ramble of a post.  I will post more later.  But for now, the day is just starting out, it’s sunny and warms outside.  I’m on vacation with my family and MB’s family, and things are good.  Much to be thankful for today.

Thank you for all your well wishes, thoughts, and prayers.  I say it all the time, but I truly mean it.  I love you all and thank you for your support and love.

Merle

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Last week, while I was in the hospital, I talked with a very good friend from high school about how I was dealing with current situation.  Once I got over my brief crying spell, she asked whether I was afraid of the future / my cancer / etc.  I am not sure I am afraid of what will happen to me, but more how my impending death will affect my loved ones.  I’m sad that I will likely not see my children graduate from high school or get married or lots of other life milestones.  I know that I am really getting tired of being sick all the time.  I know that it is harder and harder to maintain a positive outlook.  But I’m not sure I am afraid.

I think my fear will increase, I think, as I got to a time when the disease progresses further and my behavior is more and more restricted and, truth be told, I get closer and closer to dying.  MaryBeth and I started having the hard discussions surrounding things like what I would like to have during my memorial services; how I want to have my death handled; etc.  I think that the reality of my situation is solidifying.

My church is in the process of calling a new minister and Rev. Jan seems wonderful and I would be surprised if she is not called to serve.  MaryBeth had a chat with her the other day and it turns out that our interim minister (Rev. Roy) works until the beginning of July and Rev. Jan would start around the beginning of August.  Apparently, Jan has already spoken with other UU ministers in the area, recognizing that I may need  the services of a minister this summer (hopefully not).

In the meantime, the family and I are still planning on vacations and trips to continue to develop family memories, trying to behave as normal as possible.

I still get nauseous, I continue to have aches and diarrhea, and the fatigue is still very present.  I am beginning to have more and more aches and pains as the days go on, so the symptoms of the disease are becoming more prevalent.  Who knows what the future holds.  My tumor now is almost the size as the original tumor, but the one now is surrounding the base of the mesenteric artery making surgery impossible.

I am dealing with the edema I’ve been experiencing by wearing compression stockings.  I have a new appreciation for what women go through when wearing tights or pantyhose.  I still feel like I am retaining water, but that doesn’t seem to be a concern for my doc at the moment.  I’ll see him again in a couple of weeks and we will re-assess where I am, how I am feeling, and what treatment options are still out there for me.  In short, I keep plodding along.  I’m not giving up.  I’m in this fight to the end, it’s just that as death become more concrete and less abstract, my outlook on life has shifted.

I know for certain, however, I would not be able to face my future without friends like you all.  Many folks wonder what they can do to help, but you know what, just being there, giving me a hug from time to time, and checking in on me (showing they care) is a wonderful help as I go through this adventure.  As always, please continue to send your positive thoughts and energy.

Sorry for my incoherent ramblings.  Thanks for reading.  More later…

merle

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