Filé and Cancer

Today, I received a call from a cousin who is one of those so close to you that they feel she is more a sister than a cousin. I have a few of those in my family. She and I had talked last night for hours! Because we were unable to connect since Thanksgiving. I know that doesn’t sound as if we are that close right? Problem is she and I are on diffe T sleep schedules and haven’t wanted to disturb the other one then with the time of year we are kept very busy. 

Well, she called me a few minutes ago and I had to return her call because I didn’t hear it. Another of the ways we haven’t connected until now. She called to tell about a bottle her sister had found almost hidden on top and to the back of a cabinet. Her sister has just moved into their parents home. So she is cleaning it up and she found this bottle. The bottle had a label on it and on the label it was written the words, “made by Leola and Lavern in 1996”. Inside this bottle was filé (Fee-Lay) my aunt and my father made just two years before he passed away. 

Filé is a very common spice found in many of the pantries here on the coast of Mississippi. My father and I would go out and collect the leaves off the trees then bring back the leaves and many times actual limbs off the trees. The limbs and leaves were laid around inside the house to dry. One of the first memories I have of making filé with dad still is etched into my brain. I loved doing these type of activities with my dad. 

So, why am I sharing this? Because it brings back the fact my father passed away 2 years after he and my aunt apparently gathered the leaves and made this filé. I’m sad because I was not a part of that adventure. That thought made me start to question why I wasn’t and why I really didn’t know they had did this until after my father passed away and this is not the first time I heard about this batch they made. 

What I have been thinking is about that time I was staying home a lot. I barely had energy to get out of bed each day. Was it so bad, my father didn’t ask me to go because he knew I felt bad? That leads me to many thoughts and questions about cancer, his and mine. Did I have the cancer then? Did my father have cancer then? If he had cancer then was he as fatigued as I was? I know in time he had shown signs of his cancer which he and we did not find out until 3 weeks before he passed away. 

All those questions have me wondering how he was able to do that outing. I believe we both had been showing signs of our cancers but just had no diagnosis or the correct diagnoses. I am pretty sure I had been showing signs since 1980’s and my father had around that same time. It took his having surgery for sleep apnea to have him diagnosed and then 3 weeks was all he loved from the time he was told. At that time I was told I had chronic fatigue and kept running a temperature so did not want to make him sick and did not get to spend those last days with him. In my mind we would have at least a few months like we did with my mother when she passed of cancer. Yes, my mother too! 

So, how long do we walk around with cancer and medical individuals overlook what maybe should be checked in the beginning?  I knew almost immediately when I saw my lab test in January 2014. Of course, I went into a bit of denial about it and it took me until June that year to finally find a doctor to listen to me and send me to an oncologist so at the very least we could rule oit cancer. With all the cancer in my family health history I knew that was a big possibility but did attempt to stay positive about it all. And ended up we proved I had cancer rather than ruling it out. 

This makes me wonder because of the timing with my parents rather they really could be classified as passing from brain cancer. They were found to have lung cancer first but upon death they seem to rule the cause of death as the last Cancer to show up which is brain cancer for many, I think, or should you die while having a heart attack then that is listed as cause of death. To me it becomes another form of “what came first,” the chicken or the egg. 

Right now, I am so tired and not entirely sure I am making any form of sharing others will enjoy reading or if it makes sense. I hope it does and hope it is helpful in some way to another person. Even if it is only entertaining and or helpful to one person I will feel satisfied to have shared this with you. 

If I don’t write again between now and Christmas, best wishes for a safe and healthy Christmas for all of you. My prayers are with everyone to have their best, healthiest holiday to date and same for the new year. 

Peace and Blessings,

~Hoda~

It Will Be Alright!

It will be alright, MeMe, my brilliantly, overly, smart 9 year old grandson said to me last Thursday.  He was referring to some homework he had left  blanks in the work.  I was trying to tell him the blanks will count off for him and that his grade would suffer from it. So right about now you are wondering, brilliantly, overly, smart?  How can that be if he is not filling in the work required which will be graded.

Not sure on that one other than his words are ringing in my ears here at 5:36 AM and have all night. It will be okay, I hear him say with such confidence. Oh how I want to believe those words.  How I want to believe in my faith in God to do just that.  To make this okay, the cancer you may be thinking right now.  That’s part of the request right now but no, something that is taking presidence over that part of my life and may for a while to come.

Tonight I returned home and found a little less than half my house was and is flooded.  “It will be okay.” the sweet voice of my grandson says.  “Have faith in God to not give you more than you may handle.”  “He will never give you more than you may be able to deal with at a time.”

So what is to much?  What is my limit? I am going on no rest and I was up early Sunday morning to attend church with a cousin that I spent the weekend at her husband’s and her home.  It was a wonderful weekend.  That was until I returned home to an overwhelming task and it continues to grow as I write this.  What is my amount of this stress, disappointment, continual steps backward is enough?

All this said I am remaining to attempt to stay optimistic and pray for the best outcome.  Right now I just want to rest and I must continue to vacuum up water that seems to be doing very little to relieve the amount of was.And add to this in the morning or is that this morning I must go to a new doctor for a possible diagnosis of another cancer on top of the two I have already and the one I had diagnosed last year and removed from my face.

The one today will be a possible spot of cancer in my mouth. Then there is another spot on my knee I have yet to be tested for possible cancer. Do any more lurk within my body? Should I just give up, right here and right now? What is the point?

The point is I will not give up. I will continue and I will face each and ever crook in my road as it comes.  Right now, I am facing my body telling me it needs rest.  I keep dozing off and waking up as I type. Ha. “It will be alright.” The voice of my grandson and God reassure me.  Deep breath!

These detours are put before me to possibly keep me on track in my life, to help me to learn something or to help others learn from my life.  I know there is some possible reason and a very good one.

So what might I learn from this? That I end up with a really clean home? That some individuals in my life truly do care and want to help me then others are maybe less likely to do so. I may learn who will be there when I seriously need their support. This is real fear  for me. I just don’t know who will be there for me when I need their help. So far one cousin and my oldest baby sister will be there because they were Sunday night when I called about the flooded home. They both offered and my oldest baby sister came over to help me attempt to clean the mess. This is a relief and has helped me.

It has been a humbling experience because I am not one to ask for help. Well, I had to ask tonight if only for them to listen.  I was receiving the same type of message from each of them…It will be alright. In a year this will be a faint memory.  For now, I must figure out how I am to make my doctor’s appointment and get this mess cleaned up. That’s if I am able to stay awake.  If I even slept at this moment I would only have about an hour or two to rest.

Oh my gosh, things that don’t seem to be having water in the area are now absorbing water, boxes and papers. I heard a big crash type sound and it a stack of box type storage. Guess I need to rethink using paper, boxes, etc!  Oh my goodness and again I hear, “It will be alright!”  Really? I question all the while I really deep down know or want to believe it will be true. Deep breath!

Well, I have started a wash of wet clothes and I am about to absorb more water which truthfully seems a failed attempt.  As I told my oldest baby sister and cousin, it’s like throwing a donut to a drowning person in a huge sea.  It just doesn’t seem enough. It has made it’s way into another bedroom! Soon it will take over the whole carpeted places.  Did I happen to say how much I dislike carpet?  Really, I do and I realllllly don’t like it now!!!  I want it out and I want it out as of last week!  To late…’It will be alright.” I repeat to myself. And now I will be off to hopefully get everything possible up and off floor that may otherwise be damaged beyond use. 😦

Peace and Blessings,

~Carole~

A Zillion and One? ha

Do you ever write a zillion, okay a slight exaggeration, a zillion different messages to people in your life and give your deep thoughts when in an off mood? Struggling with life, cancer, etc. I just had a marathon of writing them.  I wrote about 4 or 5 different people.  Did I send the messages to the person(s), no.  I can’t ever decide if I want them to see or if I just want them to see it after I pass away? These messages don’t have my feelings or at least not bad feelings about them in it. It just my thoughts and emotions about what is going on with me and my body or maybe with someone else but I know the other person will probably not see it.

So how about if I put one of those unsent messages here and maybe one or more of you might answer it.  “Do you have thoughts of letting life slip from you? Do you have thoughts of being lonely even sometimes when with others and not alone?  My thoughts are overwhelming tonight.  I just want to know if this might be normal in our life with illness.   I don’t feel and hardly ever have felt I fit into this life.  I never have fit this life.  I never have fit this life so maybe God is helping with that?  He is making or has made the decision, I can’t for myself.  I no longer feel I want to live this life.”

Hmmm Maybe you see why I didn’t send it to my brother who has Follicular Non-Hodgkin Lymphoma.  He is in remission which is like telling people, “He is healthy and has no cancer and has had no cancer.”  Again another exaggeration, but the non-cancer public take the medical term “remission” to mean they are cancer fee and will stay cancer free because they are in remission.  It is so far from the truth for some.  Right?  My brother is at 6 year point of remission and that is great.  What others don’t know and sometimes he does not share with anyone, he has had other cancers, like skin cancer.

So see, even though he has been free of Follicular Non-Hodgkin Lymphoma for six years, he has had others. Which I am unable to say for sure what he has had because he tends to keep it to himself.  Maybe because he has a sister who does not know to keep it to herself.  I may have to write on that another time.

What I have heard is a lot of the cancer patients don’t even like telling people they are in remission.  Another reason for that is they still struggle daily from the effects of just having the cancer and having taken treatments.  The treatments kick you in the behind and even just having the cancer kicks!  Just by having the cancer cells I am finding it is enough to kick you to the corner and back or more. Energy is a big issue when cells are growing and or living in your body.

This is weirder for or to me because I am on the Watch and Wait form of treatment for now. People hear Watch and Wait so they think it is as if there is no cancer if they are watching it.  They know it might become something but do they really think past the Watch and Wait?  They don’t, if you ask me, they can just think the person will be okay if they don’t think past what that might mean. They don’t have to face it! Is more what it may be about than anything.

As a W&W patient, it’s not that simple.  Is anything about cancer ever simple? I mean I am on W&W and since I have Chronic Lymphocyte Leukemia (CLL) & Small Lymphocyte Lymphoma (SLL) there are chances of secondary cancers in any part of your body with just the CLL and two?  Which means my body may attack at any time and it does.  I have lymph cells that swell and reduce almost constantly. Lymph nodules that are moving and should they be moving?  Should they be swelling up?  Will they go down before they become a problem?  No, they shouldn’t be changing like this is healthy cells but are we looking at healthy cells?  Nope.

Next, the spleen is another issue and mine is on the ledge of being abnormal but can fall off that ledge at any time and become very much not normal.  And there are so many other issues that pop up like the possibility of getting flu, and zillion, ha another exaggeration, LOL zillion other infections and other illnesses which may be the one that takes you and not the cancer.  Even if the cancer is the reason your immune system was down enough to allow you to contact these infections and illnesses if they are the reason you pass then the cancer will not be.  Crazy, right? It is to me. IT’S ALL about the CANCER.

Peace and Blessings,
~Hoda~

Do We Really Connect? Do We Really Want to Connect? 

 

Written December 2015 and here I am months later with no new post and months later I still feel I have not done what I feel drawn to do. So I will edit and post the following no matter what. Then I will work to continue to post and find my way.

_________________

When I set this blog up I had thought I may be able to be more supportive. I haven’t and I apologize for that. It was about that time I had learned I have cancer. There seemed to be very little support in my local area to be found at the time. After over a year I am still not sure how much support in the form I was seeking there is. Do I really know what form that support is or will be?

There are cancer groups out there in different forms. So, why in all this time have I not been able to find that one group offline or online that feels possibly the one? There are technical groups that share links or information about the technical information but not always the type of information I need to be reading. For one it may be to overwhelming with technical information and jargon. Some do not make it seem very promising at times.

Then there are some that appear supportive and they are. Problem with those is the membership is so large people seem to become lost in all the members in those. It is more helpful but there are so many members it’s hard to really make any sorta bond which is what I may be searching to find.

So that brings me to the facts of even with loads of individuals in a group one can still feel alone on this journey. It seems we become so focus on our journey which has so many crooks and turns. Those crooks and turns keep us more isolated them bonded. And maybe the truth is we don’t want bonds because we find the bonds suck our energy which becomes very precious and sometimes it feels as if it is nonexistent?

So what do we want? What will help and be more supportive on this journey? Although this post doesn’t read the way I am about to share this next feeling, I work to stay as positive as possible. That falters more than it actually works. Some of the negative feelings and thoughts come from new medications. This makes me so leery of almost all new medication. Medications which have no connection to the cancer at this time.

So what am I, what are we, as cancer patients really seeking in relationships with others? Maybe just some sort of understanding? Understanding in the form that others in our lives understand our journey? How can they? If they aren’t cancer patients with incurable or high incurable cancer rate, they won’t understand.

While they really may think they understand and know how it is, they don’t. I know because when I was an outsider to this life, I thought I understood more. I found out once I was diagnosed with cancer that I had and still at times have no clue about this life. And what makes the knowledge of that worse, the outsiders really have no clue! They think because most of the time we give the appearance with them all is well, it’s just another day in our lives much like another day in theirs. It’s not!

Even now when I look at my brother, a cancer patient too,  when we are together I find myself wondering how he feels about it? Does he have the same feelings as myself. He was the one who labeled non-cancerous individuals as “The Outsiders”. But as I sit here writing this, “Are they the outsiders or are we?”

Most of the time I feel as if I  no longer belong to be around others. I feel as if I am in a glass space or a cage or something looking in on their world. No longer a part of that world that I seem to have left behind. And stranger still I feel I am not a part of the cancer people’s world either. So where do I fit into the world? Where do I and where have I or when have I ever felt as if I fit into any part of the world?

From the few conversation with a dear friend, a friend who for a long time seemed to have it all together. Not saying her world did not have ups and downs, she just seemed pulled together enough or in touch with her emotional, feeling side to appear so strong all the time. As if nothing could push her off the high view of the waterfall where she loves to go and find her strength. She would and could never fall.

Well, this friend has been sharing her times of lack of strength and togetherness. She shows more of her true strength now and I look to her stories she shares to find my true strength. She is showing she is as vulnerable as myself in her life and she uses that vulnerability to learn more about herself. I do the same but have always felt that was a show of my weakness even though maybe all the time it was my true strength.

My strength because although it hurts deeply at times, I was and am learning, growing. If I were not doing that, feeling the pain, learning and growing then what? I would soon find myself not breathing? Right? So, I must find reassurance,self assurance, support, respect, strength and so much more within myself. Not seek this from others as much as I should be seeking it within myself.

And with that and the fact I must think on what I just shared with you and with myself at the same time, I will end here. I will end to go and process these thoughts. To learn from these thoughts and become a stronger person in this world. A person not feeling guilty for her feelings. Sharing her deep inner feelings in hopes these feelings may help others traveling different roads of cancer or other areas of their lives.

You don’t  have to have cancer or anything deadly to get something from these shared words. It is how we all may feel at times in our lives. Right? So hopefully, you came to read this at a time when the words touch you and help you in this life journey. That’s all my dream is for this site and post. It is to share and help myself while in that process it helps someone else in the process. You are not alone in your emotions and feelings.

Peace and Blessings to you and everyone,

~Hoda~