Can’t Sleep

Yes, my sleep is at its worse right now and has been a problem for me for months now.  Recently, I did have a few days where I was able to sleep and I mean like two or three. During those days I could not help but think I was going to get more improved sleep.  It was short lived and I am now back into the non-sleeping phase and it’s not one that I am enjoying Oor giving me the nurtured sleep I require. It’s hard enough to keep my brain working properly with better sleep and then now add to it the lack of sleep then it’s even harder to keep things straight and to do things right.

Yesterday, I had a doctors appointment with an orthopedic Nurse Practioner to have my knee checked. Well, I thought it was gonna be a simple case of a cyst on my knee which would need draining. Of course, it seems once you have cancer nothing goes as expected, does it. Now I am scheduled for an MRI to see if a white spot on my knee that showed up on the x-ray is cancer or not.

Of course, it seems once you have cancer nothing goes as expected. Now I am scheduled for an MRI to see if a white spot on my knee that showed up on the  x-ray is cancer or not. I was told it is usually a benign tumor. Hearing that is it really supposed to make me feel better? I’m not sure if it helps to hear that, I guess it can’t hurt.  I’m scheduled for an MRI on Thursday afternoon. It will have to be rescheduled because I have something else to do that day.

(Note: Yes, I appear  to have repeated myself a lot in those last two paragraphs.  Guess that shows how tired I was last night.)

So after that bit of news I found myself craving more and more sugar early last afternoon. This seems to be my go to food for comfort or whatever it does for me. I know  sugar is the worst food for cancer patients or anyone really. It seems that some studies show sugar feeds the cancer cells. So I know I shouldn’t be eating it, I can’t seem to help myself and so I make my usual sugar run to the local Doollar  General. This sugar phrase will go on for maybe weeks or it could be less. I never know.

Unbelievable, I find myself falling asleep as I try to write this. I will give into the body’s need and I’ll try to turn over and rest, that usually doesn’t happen. Instead my mind starts to wander into other thoughts  which keep me awake. Something I have been using is Essential  Oils which help with my rest and many other issues. The problem is  I haven’t gotten them on a consistent regular routine schedule which will help a lot with everything. And I’m not sure why I find it so difficult to get myself on schedule within my life especially now.

(Started writing again this morning.)

So, at some point after writing the last paragraph I apparently fell asleep. It was sometime in the wee hours of the morning.  I haven’t really had great sleep since before  my  diagnosis August 11, 2014  and this was just another night like all the rest of them, no real restful sleep. I wonder at times, is it the normal way most people sleep when they have the cancer cells traveling through their body?

You see, I’m not sure because I’ve never been one to sleep very well at night. Or I should say sleep at a decent hour in the night and get up in a decent hour in the morning?  For me, I am more a night person wanting to be a day person because when I have been able to be awake in the morning at a decent hour I enjoyed the day so much more.  Or at least the morning hours are nice then I could probably still sleep in the middle of the day and get up later and be quite happy, I think.

For now, all I know is my sleep  habits  are not working for me. I’m not getting good sleep anytime of the day or night.   My activities support that I’m not getting good sleep because I have a great difficulty with my mind and not remembering well and not being able to do things. Yes, one could say it’s because of the age but on occasions where I have been able to rest a little bit deeper and with enough sleep I found my brain functions well. It’s not 100% ever because it doesn’t happen enough nights in a roll to help to that degree.  But at least when it happens it works better than what I’m getting now.

Right now, I’m finding this difficult to write because my mind is going 50 million different ways to numerous thoughts. Maybe it’s because I need to get up take my medicine which will help me focus because that’s what my medicine do.  I guess I’m kind of maybe repeating myself so I will end this post at this point to keep from boring you to death.

It’s funny when I used the word death  I immediately thought, is this going to bother someone to read the word death. It may bother someone but as for me it does not bother me in this context.   So if the word bothers you then let me know how you feel about it, I would love to hear. My best to all of you who are dealing with cancer in anyway, rather as a caregiver, patient or in whatever capacity.

Peace and Blessings,
~Hoda~

Question for the Readers and a Good Rant never hurt? Right?

Well, what do you know? I made it back pretty fast to make another post and not months later.  Partly, it is thanks to you, the readers.  You have made me wonder what brought you to this blog when I made the last post? Do you have cancer? Does someone you love have cancer? Or none of the above and were just surfing the blogs only to land here?  Or are you just trying to pick up more followers?  Hoping I would follow you? Is picking up followers that important, btw?

So, those questions out-of-the-way, now what?  Ah and then I asked another question. LOL  Guess I am unable to get away from them tonight. Have I filled you in on my history? Or at least part of it?  Hmmm   More questions! Will she ever stop, you may ask? Maybe and maybe not. LOL  Maybe I kinda like them at times, can you tell?  In some ways it makes me feel more connected to the readers. Crazy, I know!

Honestly, I have no idea right now what I will share or discuss.  There is so much going on in my life and some of it is my doing!  What was I thinking?!?!?!?!?!?! To add a lot of excess stuff to my life which needs mega attention?  Now, you may consider me crazy for that!  Guess it wasn’t all my doing, really. It had family, couple friends or so on and therapist and doctors.  They thought I should make friends and get out of the house. (She rolls her eyes at that advice and thoughts.)

Here I find out I have cancer, right? Then I am attempting to deal with what that entails.  So while doing that my internist and I decide I may need to seek help from a therapist to deal with some health issues which may be due to stress, anxiety, etc.  You think? LOL They are all telling me to add friends and places to do things which may help me to make some friends.  That many people can’t be wrong, right? Do they have cancer? NO! (Again, she rolls her eyes.)

And I go to the therapist to help with my hypertension which will not go down to any number the doctors and other medical individuals will accept. I’m pretty much okay with my hypertension readings.  The therapist joins the make new friends, bandwagon and I have had issues with hypertension since my early 20’s so why worry now?  I have had almost ever test conceived checking for damage to my body and nada!  I am fine and my heart, kidneys, everything is fine except, I have this thing called CANCER!  Should we mention the people in my life who may be the major issue causing the hypertension? LOL

So, what is their problem?  They can’t seem to focus on the medical reason I may be there to seek attention from them.  Which is stuff like breathing issues, cold, flu, sinuses, etc. or even stress! Sheez. They’ve sent me out so many times with more medicines for the hypertension and nothing for the main issue I am there to see them about at present.  Plus the medicines don’t usually work and cause me a ton more health issues.  I am so over that!

So guess this became a whine session about the medical people?  They are not all bad and I know they think they are taking care of me.  I think they are part of the reason I have the problem in the first place.  Because first I have white coat syndrome, duh. LOL  Then I have stress of each visit just seeing them and knowing they will hyperfocus on the hypertension and not what I would like them to focus their attention on at this visit.  I don’t want or need any more medication!!!  Hello! My body, my life, shouldn’t I have a choice here, what to take and not take without a threat of losing other medications which keep me sane! Or healthy? Etc!

Let’s say instead of hypertension, they want to do a treatment for the cancer. So I have the right to say no to treatment, right? As far as I know, I think I am able to refuse the treatment, right? Why can’t I do that with treatment for hypertension or anything else? I mean I am taking medication for it, isn’t that enough.  I am fine with this one pill and even if they want me to make it a  stronger dose.  So why not allow me to choose? Really, people.

Honestly, I think it’s the government’s fault! It is regulating everything so much they are making these poor doctors feel they can’t just do what is right!  Then the patients have to jump through hoops because doctors must jump through hoops.  Then don’t even get me started on the drug addicts who have caused major government regulation on drugs that should be easier to get for those who truly need to use them!!!

Here is some of what is required just to get the medication:

  1. You must call to request the prescription five days before you run out of it.
  2. Then when you are notified the order for the prescription is ready you must pick it up within 5 days of notification call.
  3. You are not allowed to drop it off for the pharmacy to keep until you may be ready to fill within x amount of days.  Or at least Wal-Mart Neighborhood store I use does not allow it.  So then must carry this 8″ x 11″ printout on regular copy paper and hope it does not get destroyed.

.All I want to do is get it to the pharmacy to make sure it is there and filled in time.  Which does not always mean that happens. Life happens and slows the process. I worry I am going to lose it, damage it, drug addict will see it before I get it to pharmacist and take it from me, etc. Yes, I get very paranoid about it all.  I know how much they may be worth on the street which is a lot!  And actually, I think the price on the street just went up on them. Telling you it is scary to even walk out with the filled bottle.  Maybe I worry too much about that lately?

And one time I wasn’t able to get the prescription  from doctor’s office because then it was 3 day. Oh my gosh, like a day or two late and unbelievable, they shredded the prescription! Yes! And then I was not able to get refills until a month later!

So, that meant I was without medication which keeps me from wanting to call end to all this craziness! Without the medication I tend to get super depressed! Which is not something they appear to understand.  And I want even get into the time I was taken off of it for three months due to hypertension because they thought it was affecting my readings which I assured them it was not.Even though I told them I believed it kept me from having mega depression issues and they told me it was probably controlling my depression!!! What? You take me off!!! Oh my gosh and they know what is best for me? Worried about the fact the hypertension which shows no sign of affecting my body may kill me?

Well, what about the lack of the rx which keeps me from being depressed and massively suicidal thoughts when I don’t normally have those thoughts on the medication? Nor did I think I was a person who would ever think that, isn’t that important to keep me from dying or having thoughts of ending it? Hello, people…people being the medical people… again I need those to survive this?

So what am I to say to them to get them to do what is right for me, my body, my mind, and my soul?  Soul? Yes! Cause I have very ugly thoughts about them when they even suggest they may not give them to me. I am sure I will never get to heaven if they ever push me to the point I act on those thoughts!!!  If lack of them make me want to kill myself, could it at some point make me want to kill others?  I mean really, think about it!!! So maybe you may want to rethink taking them totally away?

Yes, I get pretty angry over it.  I don’t think I would ever get angry enough to harm others.  I may harm myself though.  Harming myself has come close at times because I was considering  how and when, that’s not good.  Been to that point a couple to three times and always due to some medication needed a tweak or not having the medication I am discussing at all…like for three months!!!

Okay, I thought I was past that not having it for three months, apparently not? And I said I was not going to talk about it.  Well, I did so hmmm LOL Okay, so it may take me a while longer? LOL Will end this here because I think it is getting to long.  Also, I am sure it is boring for you.  😦

Peace and Blessings,
~Hoda~

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~

Where to Start?

Welcome to CCC’s first true post. I am new to the “Cancer” club which I did not choose to join and have been rather forced to join. It is not a club one has any choice over doing.  This does not mean I have not been indirectly affected or effected by cancer, more on that later.

It has been very difficult for me to know what this blog should entail and what the format should be. Why was and is posting on this blog so hard for me? Why do I procrastinate on posting anything? Why am I making this so hard?

Well, I feel a big responsibility to the readers and myself so feel very unsure “Where to Start”.  Am I taking on to big of a venture? I really don’t know, I just feel the need to do so. Why then has it become so hard just to write, post, start? My main concern is being a supportive outlet for others who may be at times as confused as myself! So this post is a start at writing and posting to just see where it leads.

First, I am undecided what the format should be. Should it be about my own adventures with cancer? Should it be about what I learn through research? Should it be more structured or just whatever comes up as it comes up? I may be able to answer that last question, definitely not structured in any way. I am not very good with structure. While I am better at just going where the wind of thoughts take me. Should it be a big mixture of input, output?

So then how does this become a supportive blog which will give and offer support needed by all of us? Not just myself but the readers too.  Should I just start with sharing my thoughts and hopefully others will join in with their own feedback and suggestions? I feel I must just post what comes into my mind so the blogs will start. Rather it be good or bad and allow the site to dictate what myself and the readers need and want. It will evolve as it should in time, right?  The bottom line is I just need to start and keep it moving because if I wait till I have all or some of the answers to my questions then I will never post a thing.

Now with that said I will work on a new post based on what comes to mind.  Please, feel free to let me hear from you on your thoughts and what you need for support.

Thanks for being here and please, return often.

~Hoda~