CLUB SAMMICH CAFE©: Family and Cancer

Hubby and Me

Mon, 04 Aug 2008 04:01:28 GMT

Last Friday was a very insane day around here. I never wrote about cause just thinking about it, is exhausting for me. We both got up before 5am in the morning and that is really to early. We had to drive across town for an earlier surgeons appointment then we had planned. As it turned out, someone canceled for a procedure at 7am. When they call you for this surgeon and that happens you grab that appointment.
Here is the scoop. Husband is set up for surgery on August 28th. It will be ambulatory care. So this is fine. Not a office procedure which I already knew due to them messing around with the wrist joint. ICK. There is inflammation by the ulna and pain due a bone spur. Plus the bones in that arm are to short..which is probaly a birth defect of sorts. The growth in there is most like a ganglion cyst. But it has more then one lobe. Meaning its one cyst which has like tenticles on it and the next lobe grows. Thats not a bad thing very common we were told. But its were it is and thats right on the radial artery and sometimes it will wrap around the artery or tendons. So its tricky.
As of now pre op...all of that info was okay. But one glitch. Husbands blood pressure was to the Moon. I mean sky high. He had forgotten to take his one med which, was not a good thing . Two days worth and he was having a problem.
So we came home. Then called the Primary Doc. Who said to come in Now. So thats what we did. She was like *Holy Cow!* The took it three times and it did not come down. I was getting worried sitting there and he was so not himself to. So they gave him two pills. One first did a re check on the bp then said nope Then a second. Finally and improvement. Then later that night I was to give him another. Which I could see the difference.
So we are addressing that issue totally. And he learned a lesson that this med can't be stopped. We were told he can possibly with checking his BP.s daily it is possible to get 2 a day verses three. and If its a problem remembering..there is a patch use. But he said no the pill is fine. PLus he told his doctor. That she had really better stress the importance of certain meds. When your on three different Meds for the same thing. They are not all the same. Seems he doesn't want to forget any of them. Now. So we are watching that closely.
His BP checks yesterday and today were great. Whew..thank goodness.
So hopefully we will be fine by the time surgery is.
Post op . Plaster cast for possibly two weeks . Then recheck. Then a splint for four weeks if things go well. No lifting at all for six weeks. Plus he told us. He will have a z..or zig zag incission due to that being easier for healing. ( I told Hubby heck I got a machine for that. He just laughed)
So thats pretty much it on that. Whew!!

I just wanted you all to know..Beth I know you were wondering on the removal of my port. I had been putting that off. Due to so much happening.
Our surgeon can take care of it. I do not have to find someone else to do it. He said * He would not remove it till my next round of tests. In Sept*
So that said thats a relief. He can do it at his office in the surgical suite. Only thing he is concerned about is scar tissue after this long. Plus he will repair my scar to. Its horrid. So I feel so much better on that for now.

We had a great weekend more on that later.

I am off. I have the Grandbaby tomorrow . So we are planning on going to the park to feed the ducks in the morning. Hoping for a nice day.
Sleep well everyone...Hugs and Prayers Hope

Words of wisdom from two survivors

Fri, 18 Jul 2008 18:18:29 GMT

Today I am sharing something that I receive in my email weekly. Long time ago some one sent me a email with the address of the Survivor Movie. Which I would tell anyone to watch that is a survivor. It pertains to cancer but it also pertains to living a strong life as well. Its on the upper right of my space. I watch it daily as a reminder for how I want to live.

That link brought me to The Cancer Crusade which for some is of great help.

Rodger and Kathy Cawthon are both survivors and have so much to offer in Weekly Affirmations. Today was special for me. As it had to do with Long Term Survivorship. It home in a lot of ways but also re affirmed several things. Long term survivors are a enity of there own. So with that said. Just wanted to share.

My thanks go out to both Rodger and Kathy for the work they do in behalf or those with cancer.Food for Thought yes! Always Hope

Courage is the price that life exacts
for granting peace.
Amelia Earhart
US aviator (1897-1937)

When I received my cancer diagnosis, what I wanted more than anything in the world was to meet, talk to and hopefully get a hug from long-term cancer survivors.

One of my happiest moments during that awful time was the evening I met a woman who was a 7-year cancer survivor. She hugged me and told me I would be fine, and I believed her. Now, of course I knew in my head that all cancers are different and that, in all likelihood, she had had totally different treatments for her cancer than I had for mine, but the facts didn't matter to me right then.

What mattered was that another human being who had been through pretty much the same thing I was going through - and, more importantly, someone who knew the raw terror I was experiencing - was still standing, proof that I could come out on the other side of this. She was hugging me and infusing me with her strength and her courage and her humanity. She made me believe what all of my doctors' reassurances and the nurses' encouraging words had not been able to because she spoke to my heart.

But there was something she didn't tell me, something that every cancer survivor learns at some point, something I'm going to share with you now, and that is this: cancer changes our lives in many ways, and it changes our lives forever.

Most of the ways are good. Nearly every cancer survivor we've ever met agrees that the "cancer experience" has given them a richer, deeper appreciation for life and pushed them to live their lives with greater joy than they ever knew
before cancer.

On the flip side, we cancer survivors will forever be getting those "extra special" checkups on a regular basis. We will be nervous, often scared, occasionally terrified. Some of us have to go through these examinations every few months for years, some more often and some less frequently.

Many long-term survivors find that, the longer they are "out" from diagnosis, the more they run into a particular problem. The problem is this: the people who weren't around them "back then" and who have only known them with hair and rosy cheeks and bright eyes just don't get it. We have even heard from some long-term survivors that people have said to them, "You look so healthy. You must not have had a very bad kind of cancer" (Excuse me? There are good kinds?). In other cases, new and/or casual acquaintances have actually implied that a long-term survivor never really
had cancer at all!

We've heard from several long- term survivors who've encountered problems with employers and co- workers who think the survivor is using his medical history as an excuse to take a few days off when he is due for check-ups and follow-up tests.

When a work-related situation arises, it is absolutely necessary to take action in order to avoid discriminatory treatment. Ask your oncologist to speak with your employer if it seems to be a simple misunderstanding. In more serious cases, it may be necessary to contact someone who can act as an advocate on your behalf. Many oncology practices and hospitals have such patient advocates on staff; if they don't, they can put you in touch with advocates in your community. In the most serious cases where real workplace discrimination is taking place, it becomes necessary to contact an attorney.

For the most part, however, the simple answer to these concerns is that it is up to us to educate the public. It is up to us as survivors to teach people who might otherwise never know it that there are more than 10 million cancer survivors in this country and we walk among them every day. Our hair has grown back and our cheeks glow and our eyes sparkle. We go to work and we go to school and we get married and we have babies and we live our lives just like everyone else. The differences between us and everyone else are generally unseen (medications, medical appliances, etc.), and every now and then we have to call upon every ounce of courage we can muster and go have some scary tests to make sure everything is okay.

If you find yourself in a situation where someone is implying that you couldn't have been very sick, if in fact you were ever sick at all, and that you might be a bit of a hypochondriac, remind yourself that you don't owe that person or anyone else any explanations. You don't owe anyone anything. You've paid your dues and then some. You're a survivor, a champion, a warrior, the very definition of courage and determination. And that is something no one can ever take away from you.

Bless the person who suggests anything different, and move on.

Dear God, Please help me move forward with my life, ever mindful that I am changed now, for the better and forever. Be with me as I lie on the examining table, undergo frightening and sometimes painful tests, and as I endure the seemingly endless wait for results. When others are less than kind about the differences between them and me, help me to remember that this is only between You and me. Give me the strength to bless them, turn away and face only You.
Amen

Rodger and Kathy Cawthon

Interesting Article

Mon, 02 Jun 2008 17:19:07 GMT

The New York Times
I thought the above article says a ton about those who have cancer and the expectations of our actions as patients.
More when I can.

In The News

Wed, 21 May 2008 16:44:45 GMT

I just wanted to take a moment to express best wishes to Ted Kennedy and his family. I am not talking about the public politician. I like other cancer patients are thinking about him
the private man he is and his family today. My thoughts and prayers are with him.

I wish him strength and courage in his fight

I read Leroy Severs, NPR Blog: My Cancer .

As I read it this morning and I do read it daily. I have to agree with him. Behind the cameras , lights, and the Kennedy Legacy, He is still just a human being like the rest of us. Those of us who have heard the words. *You have cancer.* Never an easy thing.

My thoughts are with him in for his journey.

Letting it go....

Sun, 17 Feb 2008 21:57:05 GMT

Sometimes we just need to talk about it even if your not in active treatment. Someone says something and you want to say how you feel. They can't handle what you have to say. So they blow you off..changing the subject or...saying *Your fine and your here so why talk about it!*
Last night I was a bit angry I didn't write cause I am trying not to dwell in the past lately.
However those words said. Were hurtful in that I will always deal with my health due to a disease that came into my life.
I didn't want it,
it just came in to my life and totally changed things.

Yes a family member said it. Sadly its been that way all along. It really does hurt to. I know they love me but there is a part of me that lived a harsh experience, alone minus them. I have learned to be really gentle with myself, to take care of me. Something I was not taught always...taking care of others. Now I know I need to take care of me . Remind others thats what I have to to at certain times.

He doesn't realize much. As he makes a clean sweep under the carpet. How do you sweep the elephant thats come to stay in my life..under that tiny carpet??? You can't its always there.

Recently I have been living more in the present. Letting go of some of the hardship..of the past.
The present feels so good. So many shifts are happening inside that are profound.
I have to honor the experience, what I have learned and pay it forward..to those who need hope.

So I am letting go, of how a stupid remark makes me feel. Letting it out for the wind...to take it carry it else where.

Make it a good day Everyone...Hugs and Prayers . Always Hope

*Choice is strength. Having choice is also freedom.*
Coulter Watt

At a loss for words.

Sun, 20 Jan 2008 07:20:07 GMT

I haven't written about Judy lately and I really am having a hard time with her situation.
She is back in Icu tonight on the vent again. She has a staph infection as well as a area of concern on her lung . Which they will do a biopsy on Monday. Because a bronchialscopy through the vent is just to much of a risk.
But they need to find out whats happening and get to the bottom of things.
She is resting peacefully .Her stats were all good as well.
She isn't far from my mind ever.
Please keep here in prayer.

Also today Julian from another blog a read passed away today. Julian had neuroblastoma and he was just four and a half.
Please pray for his Parents and Brothers.
It always breaks my heart when its a child. I always wonder why me..what is God saving me for. That little guy should be out playing baseball or chasing his brothers.
So I don't know all I can say is cancer is beast.
I just wish that it was wiped off the face of this earth. Not for me but for our kids.

The other blog I read is a story of a young husband and wife.
The Trica has CF and just had a baby who is in Nicu a itty bitty premie and she is Icu having a double lung transplant.
An amazing story of amazing graces.

So I am praying for all these families tonight.

Also I was thinking what I was thankful for and I have it now right here this morning. Its early and freezing cold. I can see the ice crystals forming on the windows. I can't see out at all on the lower part of the windows.
I am thankful for the compassion and empathy I have seen written about in these blogs and surrounding my friend Judy right now.
It always takes me back some when I read it and see it in writing. The written word is so sacred at times.
Specially in this day in age. I just seem to think there are more good people out there then we even know about.
Stories of chronic illnesses always touch me in that there is a common bond of most who read them.
So tonight I am so thankful for common bonds that bring us together.
As hard as that is at times. I can't imagine my life with out some of these people in it.

I am off I am pooped.
Its so nippy think I will sleep in till noon!!
Hugs and Prayers Hope

Waiting on Path Reports.

Sat, 15 Dec 2007 19:18:02 GMT

Wednesday we went to have my biopsy done.
I am so glad that is over. I hate to see the stress it puts on my family.
Wondering and waiting to get the Pathology Reports back.
I did fine I am still very sore in that area. I have a bruise the size of a
hard ball. Which i knew that was going to happen by what he had to do.
My Surgeon as always was awesome and calming.
His staff, I can't say enough for their emotional and physical support.
For me and my Husband both.
So now we heal and wait.
Waiting I think is the hardest part. You never get use to it.

I am off got some things to do around here for the holiday.
Hugs and Prayers.
Always Hope

*It's not what I can do. It's what I will do!

Food For Thought

Sun, 02 Dec 2007 07:15:38 GMT

Last week was a really long week and frankly I am glad its over.
A while back I talked a lot about the Lite The Night Walk.
Tonight I am bring it up for a lot of reasons and soon I will be fundraising again for the new year. I haven't stopped cause thats how much we need new drugs and new treatments for blood cancer.

This past week. A good my Friend Judy entered the last leg of the journey Stem Cell Transplant.
This has been a long process almost a year to be exact. She is in a trial which means this is part of research to better treatments for others.
I have been with her all the way on the journey and that will continue.

11/27 was the Stem Cell Transplant. This is where they give you extensive chemo to knock out your immune system completely.
Then they transfuse your stem cells back in. Judy is 4 days post transplant. Its a rough place to be .
Its ground zero folks. No place to go but to get those stem cells moving upwards.
Yesterday was a tough day for her. We were talking about taking it one day at time and not getting in to the next day at this point.
This folks is hard. You want to feel better but thats not going to happen till those stem cells get to work.
I feel for her I really do. I don't know if I could do what she is doing.

I do know one thing though I will walk cause I can walk for those going through this dam disease.
And I will till I can't walk no more.
Cause I know she would do the same for me.

Sometimes even in my trials with the darn disease God reminds just how darn lucky I am even with being worried about this biopsy.
He reminds me life is dam good for today.

Go out and make it a great day guys...Cause you just never ever know what the next day brings or minute for that matter.

Hugs n Prayers Hope

Mutterings

Sat, 09 Sep 2006 22:45:54 GMT

There are many reasons why I started this space. Mainly to talk about my life and deal with things with cancer.
The past two weeks I have been trying to dealing with the issues of this injury with my Hubby.
We are waiting for a pre authorization on referral for a second opinion as to if he needs surgery or not.
We were really unhappy with the attitude of the first surgeon with left us with some major questions. Mainly if we were doing the right thing not having this surgery..Now remember he is the best one here in our hospital.
So we opted for an outta network referral..just to be on the safe side.
We had a very long talk with our primary doctor about this..and our feelings on it. Then we did feel better on making a good choice..Even without surgery..It will be a rehab and pt process..that we will have to deal with.
But we will work through it.
At this point he has a lot of pain at times..and vicodin helps take the edge off..but other times he is fine..But no lifting no pushing off with this arm and no pulling at all.
But its is some better then two weeks ago or maybe we are just dealing with it on a different level.
Then the other issue..and as a his caregiver was all this workmans comp jazz and retiring..I was lossing it on all of this. We turned in his papers for retirement just prior to this happening ..as of now he is on workmans comp for 45 days. just past his retirement. Then we heared due to it being a work injury they should cover the whole kitten kabootle..and after retirement. Or a possible medical retirement with two thirds of his pay.
So then I embark on dealing with issues on the laws...OH MY GOSH!! Now let me tell you.
After almost 22 years not one person wanted to deal with the issues of a federal firefighter. Not one person!!!!Then I got to think about it...Was it that or just did they not have the knowledge to deal with it.
Something hit me to punch in ..Work injury law...and Advocacy. This I did. I could of looked for ever for a lawyer to help. In the whole state only three lawyers listed...and only one in this area..would deal with this.
I emailed him right away...in hopes with a explanation he might make an appointment for a consult.
I got a reply the friday morning . I was hoping that would happen..Cause I have no clue where to start or what to do first..OTher then if he is entitled to two thirds of his pay verses only 40% , I would be totally nutz not to back him to get this done and taken care of..So I just want to make dam sure we do this the right way, at this point..So we don't get swamped with all these things that are suppose to be picked up not applied to our medical insurance.
So I was just exhausted with all of this , I know he was to it was wieghing heavy on his mind a heart..As to if we were doing this the right way or not. It had to be done soon to..So that was frustrating to. SO I am praying we are at the right place and with the right people.
So I feel like we are moving in the right direction today...although its slow..we are moving....always Hope

Hushs and Whispers

Tue, 05 Sep 2006 01:42:57 GMT

UGH!!
There are many times I really don't get people and the denial when it comes to my cancer.

Nor do I like the whispers behind by back about it..

Why should I be ashamed of a disease that just happened to me..No shame in it.

Cancer is somethng that should be talked about. Maybe if some people would wake up quit shoving it under the
proverbial carpet. Then the stigma would die..about it. I hate the attitude cancer your dead.. This is 2006 and many are living with cancer..standing on top of that carpet.

The reason I brought this up..Is I am really tired of my Parents the denial..And how everything is just fine in there eyes with me. STable means I am good great and nothing is wrong.

The reason I am writing about this is Sept 29th. Our 28th wedding aniversary..Is my 9th aniverstary with cancer as well.
Every Sept I am reminded of so many things Good , Great the best of life...Then the toughest of trails as well.

Today my Mom said well it really doesn't matter ..your done with cancer. I don't get her way of thinking..Its wishful thinking..Having told her its a thing I will constantly deal with in life. IT doesn't compute nor is it ever okay to talk about it.
I love my Mom to death I do...but support is next to nothing and at this point..Its harsh to say its over with.
Dad as well...why worry your doing great. Sighs...he doesn't get the full just of it...Or like Mom ..denial is the protective coat they wear.
I know no one wants to loss a child nor out live them..But I m still here..Alive.
The other thing if I say something about me ..there is always a comparision on how she is feeling..Although for her age she is doing awesomely well.
So to be 74 and not have to have this crap...I so would love that to be me.Wishful thinking, maybe.

So I can't whisper about my life in general its an awsome life..But I have to bring cancer outta the dark where its not so scarey.out in to the sunshine. If only some would listen hear me out...

Its funny thing about cancer...Its like a huge pink elephant in the middle of a dinner party...Amazing how no one wants that elephant there..but will ignore it totally.

Why whisper? No one is immune to it. Talking and Learning about it key.

always Hope

First Steps of the Journey

Fri, 25 Aug 2006 00:00:14 GMT

I have been thinking a lot about this lately. There are so many things that go through your head with the diagnosis of cancer its amazing. Its so surreal. Its hard to put in writing. What I have to say is my story and what I dealt with.. No one else. So everyones situation is different with in each family with cancer. But what is important her is as a Wife and Mother..its a hard pill to swallow with kids that are younger..and just being dealt issues of this disease.
I remember walking in to the Oncologists with my Husband..Thinking * Oh my God I have cancer!* It was hard to accept and hard to hear..But then for me and only me..I thought well dam I never gave up on anything so why the heck start now. I know there were many feelings on my Husbands part to.
Anger, Sadness, Anxiety of what would come, numbness, Detachment, Denial, Guilt , Blame,and Withdrawl.
All of which are common reactions..along with depression for some.
I was worried about the Kids..who were 11, 13 and 15 at the time..So there were tons of things in my head..and how in the heck do I get them to be self sufficent so young..I mean my head was just swimming..in what ifs and how am I going to do this..And Hubby I know was the same.
The day was surreal..I was maybe in some denial..protecting the kids..and Hubby was just angry it was happening how could this to Us.. Well it did and when I think about I recall thinking...If I am feeling all this..then the kids are and have a right to their feelings to..I had one that was not old enough to grasp..it..So we told him ...Mom was sick and doctor would give medicines to make me better..But he was smart..we knew others with cancer..At 11..he didn't want to go to school but we worked it out. But it was hard I will not lie.
Then the next was 13...She was mad and angry at the time and just wanted to know why us..Not now she replied..Typical for a child 13 when the world is about them..But she came around and was a great..helped lots with the younger one .
As for the 15 he to was a great help but he was very quiet..and had not much of a reply on it..I think that is normal for some kids as well.
As adults we forget they are smart and see what info we put out. So we were very honest on what was happening. For us there was no way we couldn't tell them due to my facial surgery..it was all to visual.
I almost wished at times maybe some denial not sure ..That I could of not said anything.. But then I look at them now..and their understanding of others who are sick..I know we did the right thing. In being straight and honest with them.
There are lots of different reactions...Some times I think its harder on family at times and those caring for us.
IT might make sense to keep in mind, that loved ones face issues that are some what different from those faced by the patient. They may experience guilt that they themselves remain heathly..fear that they will deprive the one they love most,and feel helpless as well. Its daughting fighting cancer by anyones standards.
So there is no doubt in my mind no matter who you are..survivor , co survivor ( husband wife spouse friend) caregiver. ITs a rough road for anyone who is there for us.
Just remember one thing..your not alone...and what your feeling is normal. These are just the first steps of the journey.