Thursday, May 4, 2017

second chapter

I said before this may be too much information but it is what it is.

Now we are on the second course of the toxic meds that are supposed to keep the Myeloma at bay.

It's tough to see the rough times and the person who was once able to get up and go, just trying to keep out of pain by moving slowly and deliberately to avoid any movement that will cause some kind of pain.  At times there is no pain, but the brain is so accustomed to feeling the pain it's like a phantom pain is there. 

That was the first week of the second course of this toxic medicine.  We are now at the end of the second course.  The hot flashes ( really the opening of flood gates from all the pores in his body at the same time- soaking all the clothing he has on and using small towels to stop the flow of water rivulets that pour from the top of his head...that's no exaggerating....Enough pours off that he needs to get hydrated by IV) seem to have slowed but there are still lingering side effects that may cause a change in the medication.  We are now facing going to the oncologists a couple times a week to get sort of an infusion of a different drug (I'm sure with all types of other side effects we can look forward to).

I know chemotherapy is the pits, and for a lot of folks it's a lifesaver.  The problem as I see it is this; the theory is the toxic chemicals will kill or chase away the cancer for a period of time, but it's all dependent on so many factors.  Many of those factors are based on how much of the side effects each person can endure.   Sometimes the chemicals will kill off the Cancer cells for good, and that's what everyone hopes.  But the reality is, it's a crap shoot... If luck is on your side you have a good chance. 

When he was first diagnosed I had so many people ask me if we were going to go to the Cancer Research Center, Dana Farber, the cancer center in Texas for another opinion.   Well, here's what I told everyone...I did lots of research on my own, spoke to a Myeloma specialist, went on the website for Myeloma, checked out the pharmaceutical companies blurbs, you name it, between my daughter and I we did out homework. 

This type of cancer has a regular protocol.  Yes, there are lots of new studies and ideas about this cancer, but the bottom line is not everyone will be able to take new drugs, or they may make them sicker.  It depends on so many variables... If you are diagnosed with any cancer and you're pretty young, you may have a better chance but then again...if you're older and have lived through some of the other health issues as you've gone through life, you may have some antibodies that will help to kill off some of these cancer cells...then again...maybe not. 

You usually don't get anything definitive from the Oncologist's either.  They know better than to give false hope, no hope, possible hope, whatever.  They end up giving you the same information you've gleaned yourself from your research... That's the God's honest truth.

There's always hope.  People will say that all the time, and they are absolutely correct, there is hope.  You can ask everyone to pray or send positive energy, Reiki through cyber space all sorts of things, and some of it may help, so go for it.

We are hanging in and doing things as they come.  I have a neighbor mowing my lawn right now.  There's another neighbor doing my raking in the front yard.  I can only do so much and yard work kills my back so the neighborhood has taken it upon their hands to help out where they can.   I have another neighbor making a platform for Larry's recliner chair to raise the height to make it easier for him to get out of the chair.  He's moved from a wheelchair to a walker, so that's progress. 

Starting on Monday we will be going to out patient Physical Therapy. That will at least get us out of the house and we'll be able to see other walls rather than the ones in this house. 

It's not easy, and for me it's a struggle, but it is what it is...

I am blessed to have people helping me with everything.  I couldn't do all this on my own it's just too much...

Karma is great....for so many years I've tried to help out other people, now I'm getting my rewards.

Friday, April 21, 2017

Maybe too much if it is stop worries

I see by the dates the last time I wrote something...almost totally something was in January....Now here it is April... Lots of changes have happened in a very short time.  None of them great changes, but after all the only constant in life is change so I guess it's the way it is.

At the end of January we were going to Doc appointments to see why Larry's back was giving him so much trouble.   There was talk of muscle tears, tendon pulls, you name it. The Primary Care Doc wrote a prescription to have him go to Physical Therapy (PT). So, that same day we headed over to the local PT office and signed him up. 

He did that for about 6 sessions and things were progressing horribly... After going back to the PPC again it was decided he should have an MRI, that day.  He was unable to lay down at that time so the screaming in the MRI machine was incredible. Somehow he, and the staff managed the test and he was wheeled out in a wheel chair to my waiting car.  The drive home was very difficult and painful for him, and me as well...

The next day was worse but we had to go to the Doc to see the results of the test...  We had taken one of the other tests to determine what was going on and those results would be there as well.   The PPC was very sure we were dealing with MM (Multiple Myeloma) and it was a treatable, albeit not curable kind of cancer of the bone/blood. 

That was the beginning of what has become a long arduous journey of Docs, meds, nurses, hospitals and new vocabulary lessons.  The internet was a great research tool and there were many resources to get more information about a disease I had rarely heard about.  Although, I knew Tom Brokow had retired as a result of contracting MM. 

We had more Docs to see. This time they were Oncologists and Radio-logical and an assortment of other technicians and lab workers...

The fun began...

to be continued

Thursday, January 5, 2017

Listen may learn something...

This blog and others I write I write quickly with rarely any thought to proper grammar or spelling.  These are "off the cuff" no holding back...They are what they are...


In the past I've written blogs concerning things I see on a daily basis.  Sometimes they're funny and I try to convey that in the blog.  At other times they may be observations of how I understand things.  This is one of those, not gloom and doom but reality of things that you may not understand or never have to deal with in your life. 

I've been a student of psychology and sociology.  My specialty was in the field of "Aging, death and dying".  I read all the literature I could get my hands on about the psychological process of grief.  How it affects the brain, how the physiology of the body reacts to stress, how seemingly simple tasks are overwhelming to the grief stricken.  Yeah, right.  Let me clue you in to the reality of this stuff from my new perspective.  I feel as though I'm doing a PSA (public service announcement) to all the uninitiated.  No kidding.

First of all, the books that are written about grief give you a glossed over version of what the person writing about the grief thinks.  That person usually has some notion of the workings of grief but they can't know what you or anyone else is going through.  They can surmise things but that's about all. 

Grief is a personal journey.  It's sure not easy and it's not something you can tell someone about.  Yes, you can give them the generalizations that everyone thinks about but not the nitty gritty.  Some grieve sincerely forever, never leaving the initial grief stage.  Some seem to bounce back shoving the grief into some dark recesses of their mind, hoping to bury it so deep as to never find it again (doesn't work by the way- it will get you in other ways-trust me on that).

I've been going to therapy, listening to the stories of others.  I thought at first, "What in God's name am I going to get out of this.  I've studied all this stuff ad nausea".  I know the theory.  I know what to expect. I understand what's happening to me.  I know what the next step is and I'll get through it sweat.

Was I too cavalier about grief? You bet.  Was I holding myself above the others thinking I knew more than they did? Of course.  Was I sure that I knew best? Yes, I did.  

The one thing that made me laugh (to myself) was when my daughter realized that I was a basket case and she was shocked to see her, "bad ass Mother (her words)" vulnerable.  That made me start thinking about other folks who have parents who they think are "bad ass", "tough", "capable" "with it", etc. 

Grief has a way of taking over your life.  You are dealing so hard with the grief you can't seem to focus on anything else.  You see things that have to be done but you don't give a rats ass about any of them.  Not because you're thinking about the one you've lost but you're trying to keep breathing, in and out ( and trust me that may be the only thing you accomplish of some days).  It's not depression, it's a sort of depression.  Granted, some may go into full fledged clinical depression but from where I sit it's not what I'm seeing.  I've seen the full fledged clinical depression, experienced even and I'm hear to tell you this is different.  I think there should be a different word used when "depression" is a result of a death of a loved one.  I don't know, maybe, "soul longing? unknown fear dwelling", something other than "depression".

Most people have no idea how tough it is to go through the day not knowing what that day will bring.   Will I break down in the super market because I see something my  kid loved as an adult, a kid?  Will I look at Gatorade differently because that was his drink of choice.  Will I see someone who doesn't know my son is dead and they ask, "So how is the family these days?'.  Then when you tell them they look as though a shutter has dropped over their eyes and they flounder to say something "profound".  (the best thing to say is, "I don't know what to say" covers it all.   The worst thing to say is, " OMG How did it happen?" that's usually their immediate thought. Then if they're really stunned they say, "Well, he's in a better place...".  No, he isn't, he should be here with his family and us...  The worst is when someone says, "OMG, I don't know how you're handling this, I'd kill myself". Yep, that's been said.  I know it's not meant to be cruel but it is. 

Most of us want to talk about our loved one.  We love to hear the stories of them and things they did that we may or may not of heard about before, it's kind of nice.  So don't be afraid to give us reminders of past things it keeps the memories alive and in some way the loved one as well. 

Well, that's it for me... I can write for a time but then I can become overwhelmed, as I am right now. 

This has been your PSA understand?