Dancing In Limbo

Just Some Thoughts.

2011-02-17T09:15:00.000-08:00

I have not been writing much on cancer lately. In fact I was really getting out of the mode of writing about it. In August of 2010 I was dxed with Nodular Basal Cell Carcinoma. The most common form of skin cancer. One that is taken very lightly by people. Simply because you get it they remove it and not much is done. Most have 99% chance of a cure. That is all great and well for most.
However if you have had another cancer or like me had skin cancer on the radiation field of my first cancer. My risks are higher and this is a secondary cancer. I brought a ton of things back from the past and those things really threw me in a rip tide of feelings.

I guess I am writing this because I need to but I need to address something else. Its simple as a long time survivor coming up on fourteen years soon. There are many issues to survivor ship its never easy. At least from where I sit. Having one cancer was problematic now two. Very interesting. Plus all the long term issues that have come up due to the disease and its treatment. You fix one thing and you gain other things . For me cancer is the gift that keeps on giving. To be honest there is a lot of thought on where does this all stop!

I am not giving up by all means. NO WAY! However new to the list of things on top of the mountain is a General Anxiety Disorder and depression as well. Hindsight twenty twenty . I have to wonder when this started exactly but I know it can't go on with out treatment from a professional.

I grabbed all the strength I could muster made an appointment after seeing my Oncologist . Who gave me a referral. To see a friend of his at the Cancer Center. I was nicely surprised and thankful that I finally am addressing this.

Also come to find out that other things need checking first such as my Thyroid Levels and a few others to be sure we are not having to up my medications for my Thyroid first...to see if there is an improvement. Or if due to a Vitamin D insufficient might be part of it with the Thyroid. So Is this true anxiety yes...but is it caused by a chemical or hormonal imbalance. So a allot to consider. Before full medications at this point. So there is a lot to consider before any new medications are given . So more blood work in the morning to make sure where we stand.

Truthfully I use to be able to stuff things down and move on with things. I am finding that hard and am glad I was able to discuss that. Cancer is tough life altering and to be honest a lot to figure out. Long term issues caused by it are frustrating and if your not talking to the right people. Its almost impossible to at times to deal with the journey of all of this.

So hopefully we are on the right track. For now its Ativan at night or when needed for the anxiety. So far just at night. Simply because of dental surgery coming up and the anxiety that comes with it. Other wise it makes sense to check out all of the above and not go on other medications I may not need.

More updates later.

P.S If your a cancer patient reading this. Please talk to your Doctors if you feel you have some of the same issues and need help.

War

2010-05-23T18:46:00.000-07:00

Chemo and something that might help others.

2010-05-12T14:15:00.000-07:00

I hope this helps http://www.dana-farber.org/media/flash/scarf-tying/someone who might be starting out in chemo. Its really hard the changes from chemo. So any small thing that might help us feel better about our looks is a good thing.

Understanding Survivors.

2010-02-22T17:35:00.000-08:00

Cancer is a funny thing...Strange and really robs us of what is normal for us. In talking to several survivors lately. Though I have lymphoma most of my surgeries were pertaining to the head and neck. Which makes me rare in that I had wide spread disease but it was not fun till Exploratory surgery to my face and the masses there.
There have been many changes in my life due to that.
Non Hodgkin's Lymphoma being a blood cancer , it can reside in any area of the body. It's a scary thing to know that. NHL is manly diseases in one that can intermingle and cause issues.
Some say I am the same as I was prior to all of this. I have argued the point that cancer has changed everything. But its not worth it. People that do not have cancer don't understand a percentage of them. Being told to get over the experience that was so life altering. Is plain rude.
I have had it ,with trying to explain the live altering issues with people who have been told over and over about it.
In some ways I am the same but in many ways oh so very different. I also know I am so much stronger then I ever even thought possible. This experience for me has been empowering in many ways as well.
In talking to others who are Survivors as well over the past 12 yrs or so. I have realize we are a select community of people. We are card holders to a club no one cares to belong to. NO one takes the card back once your in Remission. Remission means your disease is inactive that's that's basically it. But your doctor does not wave a magic wand over us and all the side effect from surgeries treatments all of just go away. I wish that was true. Once they tell you , your a cancer patient your in it for the long haul . In stable condition and in remission. You stay vigilant in hopes to keep cancer at bay. Check Ups...help us stay on top of things in hopes if it comes back and active . We can nail the hell out of it and kick it back again.
Been there done that three times.
So I guess what am trying to say is there are times that I am really dancing in limbo. Anything new comes up and its...geesh I wonder is it the cancer. I stub my toe and good Lord the cancer is back. As much as I would love to say it goes away what we feel . It doesn't but everyone copes in a different way with the cancer situation. No two people are exactly alike.
The other issue for me is someone I know read that NHL is the good cancer to get. Now I am here to say after five years on and off of treatment and stage 4 disease. It is not a good cancer at all. Easier to treat yes but not good. Why the hell do people think that?? Why do Doctors tell patients it would be better to have Lymphoma verses such and such cancer??? Then I have to hear that...and others who know darn well NHL and HL both stink No matter what type it is its still cancer.
I am one of the lucky ones and this I know for a fact. But the journey had been long and hard. There are days where cancer is easy to forget and other days are really really tough. Long term issues are a real hassle and to be honest. I don't bring them up any more due to...people looking up at me like I have 4 heads. To them its done and over with. Sadly the stigmas with cancer never cease to amaze me

I wanted to update this journal. And listed it as a Living Journal. Because even with Cancer life has a way of moving forward. We live life to the fullest daily and hope and pray things stay as good as they are.

2010-02-08T13:23:00.001-08:00

Standing in the inspiring vision of my future, I boldly take every step - large and small - with courage and intent. - Jonathan Lockwood Huie

Having set a direction, begin - begin today. Take action - take action every day.

Favorite Quote

2009-10-04T09:45:00.000-07:00

Consult not your fears but your hopes and dreams. Think not about your frustrations, but about your unfulfilled potential. Concern yourself not with what you tried and failed in, but with what is still possible for you to do. ~ Oliver Wendell Holmes

Livestrong Day and Global Awareness

2009-10-02T12:07:00.001-07:00

I love this....

2009-09-25T14:20:00.000-07:00

The Survivors Club - Doc Gruber - Lymphoma Survivor

Here is a good lesson of the importance of being your own advocate. Twelve years ago I asked some questions about the drug Fludarabine. At that point I was looking at a bone marrow transplant and no donor to be found. This drug got me to a partial remission to move forward. Doing your homework on your disease creates a positive situation. Your doctor might not have the info or he does and needs reminding whats out there.
Please watch this with an open mind.

I love this.

2009-09-20T18:14:00.000-07:00

2009-07-19T07:29:00.000-07:00

Anne Lamott’s words on hope: “Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don’t give up.”

Check this out.

2009-07-18T10:18:00.000-07:00

If you are a cancer survivor check this out.
Long time ago someone shared this link with me about the Cancer Crusades Survivor Movie.
It my many means is my motto. It also by all means can help someone else starting out and in the fight.
Take a look scroll down to the bottom of my blog...to below older posts. I hope it helps a little.
Give me feed back as as I am in touch with those who bring this video to us.
Enjoy!

Now Scroll You know you want to:)

Defining

2009-07-16T14:09:00.000-07:00

Its funny how people perceive cancer patients. One thing I know is that I do not want them to define me due to my cancer.

I was reading another blog today . It was beautiful. I made me stop and think about how advance cancer affected my life as well as that of my family , husband and children.

It made me realize how many Moms are dealing with cancer on a day to day basis and how we might affect others not even realizing it.

It reminded me just how important family was when I first found out I was sick . It also reminded me how tightly I held my children during treatment trying so hard to soaking every ounce of each and every second with them. Making sure Mom was mom and nothing more.

What does define me is yes I am a mom,wife, grandma,daughter, sister friend and then I might have a space for cancer survivor. Its funny there is so much in my life that cancer takes second fiddle even at its worst. I dug deep fighting to keep so many things first and not let cancer have the upper hand.

But defining me .Never.

Cancer makes us hug our kids a little longer. Hold tightly to making sure they know we love them right here and now. Not later. Every glimpse is precious and hug a gift.

Its funny because even with cancer in my life. No one knows how long they have. No one. I am always always shocked when we loose someone and we have lately and I am still here. But as someone said recently . Life is to be lived today in small defining moments, making sure those around us know we care by our actions and the words. Leave nothing to chance.

I am so glad those who are close to me know me so much better then this one person.

Gut Feelings.

2009-07-15T07:06:00.000-07:00

So often with cancer there are so many things that happen to us. I am looking for the words to as a survivor to share with those fighting now.
I remember for a while not dealing with my first surgery at all till I was done with my first go around with chemo. I remember thinking surgery is done lets move on. Not giving any thought to them opening up my the left side of my face and exploring to she what the exact problems were. Sure this told me what kind of cancer. But the word cancer is so huge it kicked me back...only thinking what do I need to do to get rid of it.
I also thought back to the doctors and I use the word loosely, who said it was in all in my head that I felt this incredibly tired and sick. Amazingly they found the cancer in my head due a mass that had formed in my left Parotid Gland and the lymph nodes surrounding it. However it was wide spread and stage four and terminal.
I also have had to deal with the doctors and how they handled my case. Once I got to the Surgeon and Oncologist...which had I not pushed for a surgeon I wouldn't be typing this. My Surgeon and Oncologist both agree that my case was not a normal one but should of been caught by one of the four primary doctors I saw on a cbc or a bio chem panel. It was not.
Thank God for my Surgeon who agreed that this mass was not a cyst and it was not in my head since my per op blood work and white counts were in the toilet at a mere 1.5.
when my last test was at 3.0. So there was a huge issue looming.

So I am writing this to say if your reading this and your trying or fighting this disease. If you are not sure of something *ASK* demand action on your part. It might just save your life to do so. IT did mine.

When I think back I am so happy I went with a gut feeling there was something going on they were not seeing. I also had a skin specialist tell me all I had was a cyst on my face as well. I was annoyed having had one before I knew in my gut this was growing to rapidly to be a simple cyst. I was annoyed at how they passed me off when I left the office. I said screw it and went back in and asked for a name of the best plastic surgeon they had. That one action I believe saved my life.

So that said..if your not sure of something pertaining to your health Ask and demand answers. I know its hard and I know at times we do not want to rock the boat. But a good rock is what they need to do what needs doing ..Then go for it. If a doctor isn't willing to give answers or fight for you to find the info. MOVE ON!

If this post saves one life then I have done my job as a Survivor.

Nothings Impossible.

2009-07-11T09:45:00.000-07:00

I suppose I could sit here all day and look at the things cancer brought us. But I won't.
Instead I will say nothing impossible. Nothing!
Yesterday was a day of reflecting. I have one little lovely grand daughter. Such a blessing given to us. Also one I never expected. Life happens even with cancer in it.
One thing I learned is that today is here and now and to enjoy it. Nothing is promised so make the best of here and now, of today!
Yesterday my husband and I packed up our things and took the grand daughter to the park. I knew it wasn't going to be an easy thing. It was so worth the energy to see her enjoy it so much.
Before we knew it we had walked the whole boardwalk,the trail and we were on our way back. It was hot and I was really tired. I had to smile though because this is the trail that has beaten me down in the past and this time, I won! Small victories are the greatest. I have not walked that whole trail since April of 2001. I was nicely surprised at the changes and updates we found on the way.
Cancer treatment kicked my butt there is no doubt about it.In so many ways. But with out it cancer would of kicked way worse. Treatment and the fight beats the alternative.
So today I m grateful. Nothing is impossible, if your fighting cancer and in treatment keep fighting. Give it the hell it deserves. Its so worth it to look back and see it from the other side and reflect.

Joy

2009-07-11T09:39:00.000-07:00

"We are shaped by our thoughts; we become what we think. When the mind is pure, joy follows like a shadow that never leaves." ~Buddha

Vision

2009-07-02T14:24:00.000-07:00

Courage is not the absence of fear, but rather the judgement that something else is more important than fear. ~Ambrose Redmoon

I have been trying to make some adjustments due to the treatment of this darn eye infection. This time the process has been really annoying. Finally we are starting to see a change in how its reacting to medication.
Thank God.
However it re~occur ed in the past and that is annoying to say the least. Plus I freak because I am more scared of being blind then cancer sometimes. I know how strange is that to admit!

I am grounded to because I can't drive at night or dusk because any glare sets me off. I can't see and have to hide my eyes. So that is annoying to . Plus in the day time if its sunny forget it..NO driving even with good sunglasses its out.

Today I was finally given the ok to order my New Glasses. I swear it was like walking in to Tiffany's to get jewelry. I was so excited I couldn't see straight(no pun intended LOL) We have been comparison shopping since our insurance doesn't cover glasses. Truthfully the cost for what my script read was a fortune. Who in the world can afford lens only that are close the cost of a house payment!!! I am not kidding either. Using my old frames which they wouldn't guarntee if there was a problem.

Finally a good friend..said try here and see what you think . She sent me to a friend works at the competion but I gotta say what a difference in price and quality of service all of it. So I walked out happy with our choice Lens what I needed and new frames as well for half of the cost. From one of the nations bests.:)

Only bad part..is I need a special lens and two different treatment processes and have to wait for 10 days to get them . I am just so glad we are on the way to getting this all straight. I just hope that I do not need another pair in 6 months down the road. If I do now I know were I can go and make adjustments in something more within our budget. I Hate when something we need is so expensive you have to worry where the funds will come from. Its not like you don't need to see.

So we are on the right track .....and hopefully I will be posting soon. With a smile on my face and no eye pain like I am having now due to eye strain. As well as blurred vision do to one eye being really bad and the meds doing some of the same.

More when I can....Hugs for now and prayers for all who need them.

Life

2009-06-24T11:24:00.001-07:00

“I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next.” Gilda Radner

Upswing

2009-06-14T08:42:00.000-07:00

Rough couple weeks..Darn Eye problems again. So hopefully we are on an upswing.

Oh So True.

2009-06-08T19:59:00.000-07:00

Cancer is a journey, but you walk the road alone. There are many places to stop along the way and get nourishment – you just have to be willing to take it.

-Emily Hollenberg, cancer survivor

We are Survivors.

2009-06-07T10:13:00.000-07:00

America's 12 million cancer survivors will join survivors around the world in observing the 22nd annual National Cancer Survivors Day on Sunday, June 7.

Now all of you who read here. Go out and enjoy the day! Grab it and celebrate!!

Fragile

2009-06-02T19:33:00.000-07:00

Life is like that. Fragile. About a month ago I noticed a robin building a nest on the thin railing of the aluminum patio awning. I knew it wasn't a great place for a nest. Husband though not happy left the nest and then the wind blew it down. I kept it because it was exquisite. If you have never seen one up close , they are best made nest I have ever seen and the most messy as they build.
About two hours the robins were back up there building again a slightly smaller nest, but equally as awesome.
I read about nesting time and low and behold three eggs appeared then the rains of the week of my birthday. Friday night was a horrendous night winds and rains. The whole night it blew and the rain was so hard.
In the morning we woke up and the nest was still up there but it was so dang windy and my birthday.Within an hour the nest had fallen to the ground and two of the three babies throw down to the cement. The last egg I have no clue where the wind blew it.
Our concern were with the babies on the ground. One barley breathing and the other dead. The poor Mother and Dad were so upset. The Mom wouldn't leave she even sat over the living baby trying to comfort him. As she would leave she would go to the second one. It was so sad to watch.
The nest had toppled and rolled under some chairs on the patio.
We put the nest up and the baby in the nest. The little one died and the Mom was beside herself. So was the Dad as well tried to help.
The last two weeks we have see the sparrows leave the nest and the morning doves
grow. But I am said when I see the Robins. Knowing how hard and the loss they suffered.
Tonight I also learned a friend lost a young Husband to Leukemia. They tried everything to fight this dam disease. Like nature sometimes the strong though fragile suffer till the end. And He was so strong.
Life every form is fragile. Then I hear people talk of such trivial things and waste the time they have it saddens me. Life is to short.

Note To Self

2009-05-28T13:52:00.000-07:00

I have thinking about this a lot lately and its comes to this. Sometimes when we are dealing with illness in our lives. I m not the best writer but this what I have come up with.
Deep in my heart and its really heart felt at times. I'm a giver no doubt about it.
I always want to help others. Then I realize I have obligations to myself.
I suppose when I see others not reciprocating when I need help then its unhealthy.

So for me its a hard. Its taken me a really long time to get that there is a huge difference between being selfish and self care. Its realizing it and putting in to action is becoming so much easier.

Self care in the realm of cancer is a must. Even if your a caregiver and have cancer as well, you cannot help anyone if you don't take care of you.

So to day I have Post It on my computer that says *Care for Self*

2009-05-26T09:48:00.000-07:00

"Your life is a sacred journey. And it is about change, growth, discovery, movement, transformation, continuously expanding your vision of what is possible, stretching your soul, learning to see clearly and deeply, listening to your intuition, taking courageous challenges at every step along the way. You are on the path... exactly where you are meant to be right now... And from here, you can only go forward, shaping your life story into a magnificent tale of triumph, of healing of courage, of beauty, of wisdom, of power, of dignity, and of love."
Caroline Adams

Pruning

2009-05-25T11:52:00.000-07:00

A beautiful day here in Michigan. Lots of sunshine. I love spring that's for sure everything is green and blooming.
I pulled some weeks up along the house. Then trimmed the dead branches off the Japanese
Maple tree. Winter hit it hard and I am hoping with pruning it will fair a bit better. So far I did grab off all the dead once and new leaves are finally starting to pop so that's good. Hopefully it will fill in soon.

Then I sat on the Patio and decided to knit for a bit. Relaxing is a good thing. I need to be kinder to me. As my husband said *Your always helping others. So please
relax and take care of you!* So I am listening.

Pruning I think happens to when you realize after cancer how different you body feels
after treatment. Most days I feel good but as I posted Fatigue is still one issue years later that has me in its grips.

When I was in treatment all three times when my kids were in school I slept a lot. I thought I was turning into Rip Van Winkle at one point. Chemo is cumlative and in the beginning it wasn't bad. But mid way..It stunk because my counts were low to start out with. So that said. Low white counts are not a good thing and I had shots to bring that up. But still I did not escape the fatigue.

I think the one thing at really gets me is my last form of treatment was in 2001 the third. I still at times just get down right exhausted and then it hits. If I knew and could plan it. I would. But hits and hits hard.

Its funny some days I feel so good now. Other days well are not so great. But I have to remember I have a cancer that is stable not cured. I hate the word terminal,but no matter how I cut it, it is what it is. But then ...HAH! Life is terminal no one gets out alive.

Busy

2009-05-21T10:23:00.000-07:00

This month has been extremely crazy. I have to remind myself on a regular basis its not what I can't do that matters. But what I can do and do do daily.
One thing I am finding horribly hard. That's being a caregiver with my own health the way it is.
This damn fatigue that lingers is so annoying at times. It hits me like a speeding freight train at times. Then all I can do is sleep.
I keep thinking at times if I had to radiation of any type to the head and neck area again would I. I keep thing no way. As my radiation oncologist as said *It will get better in time!* But she has no answers to how much time or when. Having had it in 2001 you might think now would be a great time.
I guess maybe I need to be happy it did the job and deal with each day as it comes. Be happy to have them tired or not.
I just wish someone would invent something to help cancer patients..who are dealing with fatigue issues. Other then taking time outta our lives to just sleep. I also think people who do not have cancer, totally get this fatigue. Its sometimes brain numbing and something noting helps but to sleep. Its never planned it just hits.
So that said. I try and rest as much as possible then when it does hit. I m not totally outta commission. But still when it does like today. Its so annoying.

Comfort Zone

2009-05-04T15:20:00.001-07:00

Lately I feel like I am really outta my comfort zone. When I am I paint. Having a degree in Advertising Design and a minor in Photography. Some how I always grab a paint brush or a camera.
Lately I'll be honest I feel kinda caught up in life. A good thing. But some tough things going down to.
I feel like the figure in the painting with Life swirling around me. Kinda like being dizzy after being on a roller coaster ride and you want off. But life just keeps on happening. With cancer a great diversion.
I don't know I feel stuck , or overwhelmed in that I feel like crud due my immunity being in the toilet. But then I shouldn't sit here and complain as I am stable. Ugh!!
It amazes me at times I do really great. Then one life time event...throws me in a tale spin outta my zone.

2009-05-03T17:15:00.000-07:00

"I would rather be ashes than dust! I would rather that my spark should burn out in a brilliant blaze than it should be stifled by dry rot. I would rather be a superb meteor, every atom of me in magnificent glow, than a sleepy and permanent planet. The proper function of man is to live, not to exist. I shall not waste my days in trying to prolong them. I shall use my time."  Jack London

2009-04-25T10:47:00.000-07:00

Today I ran across twelve old vials of Leukine (sargramostim) is a recombinant human granulocyte-macrophage colony-stimulating factor. Which was the study drug used along with the FDA approved drug named Rituxan. My magic bullet to becoming stable.

Why I never threw away the vials I don't know. Maybe because the two drugs together did give me a good stable situation with the lymphoma. It can't be cured so stable is where I wanted to be.Praying my bio chem panel of blood work still is good. Waiting on that.
The past few days I have felt very fatigued and lots of problems again with my joints. All limb related. I have been really cranky I admit it. Mainly because the my hip ,knee and ankles where I know I have ostero penic issues and thats the pre cursor to osteo athritis. As well as the up and down Michigan weather panterns I have been miserable the past week. I have meds so making sure to keep up with them but debating that we might need a change up to deal with the pain issue. Least at this point its not osteo prosis and I have ran the route of un explained fractures to so that is no fun.

It kinda brings me to this. Yes I am stable but no cure. I am lucky a heck with stage 4 to be stable and for whatever reason, I have felt so blessed no matter how crappy I feel some days. I always wonder what if there was no research and no trial drugs. I wouldn't be here. So maybe keeping the vials reminds me of the journey back to stable. On a day like today. I really shouldn't complain besides who wants to listen any ways.:)

I like this explanation

2009-04-23T08:43:00.000-07:00

I found this today. I acknowledge the copyright to the author. Email me if its you through my profile.
This kinda a good story about what LYMPHOMA is.

First of all, lymphoma is not a disease of the lymphatic system. It is a disease of lymphocytes, a form of white blood cells, which circulate throughout the body in the blood and lymphatic systems.

The lymphatic system and the blood system together form the circulatory >system and connect to every part of the body. Blood cells originate in the bone marrow. Lymphocytes are the "brain cells" of the immune system. They direct the actions of the other cells involved in fighting off diseases, cancers, etc. When faced with an invader, or simply a damaged cell, lymphocytes reproduce, quite rapidly in fact, and activate the other parts of the immune system.

When this occurs, these lymphocytes are called "reactive." When they've done their job, most of the newly born lymphocytes die an honourable death and things return to normal. Sometimes, however, a good lymphocyte goes bad.

It reproduces and keeps reproducing for no good reason. The newly born lymphocytes don't die an honourable death, but hang on and produce more bad lymphocytes. When this gets out of control, it is called "lymphoma."

There are many different times and places in the life cycle of a lymphocyte where things can go wrong. Depending on when and how the lymphocyte goes bad determines the particular type and grade of lymphoma. Just how widespread the bad lymphocytes are determines the stage.

If they hang around the local shop (oops, I mean a single lymph node) then it is called Stage I. If instead they rampage throughout the city (body), getting into all different kinds of places, then it might be called Stage IV.

Even in lymphoma patients, most lymphocytes are good citizens, doing their job quietly, having kids when necessary, and so on. The other kinds of white blood cells are also normal. It's just this one criminal family that's causing all the problems.

If this lymphoma mob is aggressive and keeps growing fast, then you can send out the cops (chemotherapy, radiation) to arrest (shoot on sight, actually) any lymphocyte acting aggressively. Unfortunately, any other cells that are growing quickly at the same time are subject to the same martial law. This is what causes side effects, like hair loss.

If the mob is indolent (lazy) they can't be identified as readily and the cops can't wipe all of them out. But they can do a good job of keeping them in check for many years.

Sometimes mobster lymphocytes sneak into the nursery (bone marrow) where new-born blood cells grow to maturity. This makes it easier for the mobsters' evil kin to spread. (This is called bone marrow involvement.)

Sometimes, with an aggressive mob, the cops just can't handle it. Then it's time to call out the army. They just kill everyone in the city (high dose chemotherapy.) Unfortunately this also wipes out the nursery.

Fortunately, before they bomb the place, they save enough new-borns (stem cells) to repopulate the nursery and go forth into the now empty city. If they can't get enough healthy babies from the city (the body) the powers that be find some other city (bone marrow donor) and take some of their baby cells to repopulate after the high-dose chemo. (This is called a stem cell rescue or bone marrow transplant.)

After this, the city is left with some damage, but often continues normally from then on.

(c) 1999 Robert Scott Pallack

This website is written from a PERSONAL point of view and not a medical one.

To young .

2009-04-23T06:24:00.000-07:00

You know some times we don't value enough the friendships we make on line. In the cancer community there are many places we might travel. As well as many in similar situations as ours.
One thing as people we connect to those with similar stories. It doesn't really matter if we have the same cancer or not. Just that we do and we know what its like. It might not be the exact situation as ours but we bond due to cancer. Its a friendship at times that is beyond some minus cancer. The understanding shared...is just something less your there you can't imagine it.
Night before last in one of my communities a blog like forum . We lost one of our warriors Randy. A young man with Prostate Cancer. What was apparent to me was not only was he a fighter till the end. But so was his wife Jen. There was this love story that bloomed and cancer well enough said it seals the deal in some. Their story was so touching in drew you in. So grueling at times that it brought sobs from those who read.
His cancer spread like wild fire , finally to the brain causing his death. I know it was inevitable at one point that he was dying and not much could be done to change things. But like all of us with cancer. Jen and all of us wanted to keep the hope.

What gets me the most is that under the age of 50 no one checks certain cancers. Jen is right. They need to lower the age to check early . Randy was dxed at 47 his wife Jen was 41. He lived with this cancer since July of 2006 much longer then they ever thought. Randy leaves behind his wife Jen and his young boys.
Rip Randy. My heart and prayers are with Jen and her family today.

It kinda hits home knowing others with Prostrate Cancer as well. Guys out there get your checkups. Don't wait. Do it now if you feel there is a problem. Ladies if you have a man in your life you love. Please make sure he goes in and has a yearly exam.

2009-04-21T09:43:00.000-07:00

The only disability in life is a bad attitude. ~Scott Hamilton

One Thought.

2009-04-19T12:19:00.000-07:00

People are so weird. Why would you introduce a friend...*This is my good Friend Kerry, remember I told you she has cancer?*
Whether or not I have cancer. I do know what to be known for the person, I am not the disease I happen to have.
Cancer is not who I am that's for sure.

Sometimes I just need to forgive others for the insensitivity. Then thank God for those I know who would never think to do the above. Their love and understanding may mean the difference at times.

Kerry

2009-04-16T14:53:00.000-07:00

*We can do no great things,only small things with great love.*
~ Mother Theresa

Passion and Ceativity

2009-04-09T13:07:00.000-07:00

*The limited potential which is the basis of all that any of us can and and have become is bought forward by our sense of humor and laughter.* ~Author Unknown.

Somethings its funny how life works. One thing I have found is that people who are sick revert to things they love, art music or anything creative. That passion gives them time away from the stress of their illness whatever it might be.

Art reminds me that I have face adversity, but I am not giving up yet!

Its funny as an artist. I had art work published when I was in college. But having a family and being busy art took a step off to the side. When I was dxed with Cancer. It was the one thing that made me feel like I was a productive part of the community again. It was then I had my first art piece published. Which was a great catalyst in my dealing with my cancer. So that said you can achieve your dreams even with cancer.
It gives us the permission to do what you always wanted to do and not hold back doing it. Any changes..cancer give you the opportunity to make any changes you always wanted to make.

As a young teen I always wanted to do many things with art and photography. As well as writing. I will admit..my art is better then writing. I went on to major in art and photography in college and always dabbled through out the year. Its funny cancer took me back to my basic God given gift.

For months I went to Gilda's Club for Art Therapy and to be honest it was the biggest gift given to myself. The support there was incredible. Positive reinforcement always is.

When I look back on the many roles we as women and men play in life.. moms, dads,
daughters , sons so on and so forth and cancer patients and survivors. But one thing that really makes me proud is through adversity such as cancer. I can now
say with passion and pride. * I am an *artist.*

Yesterday while watching my very young Grand Daughter with a q tip and finger paints. I recall my Mom nurturing my gifts. As I shopped for an Easter gift for her today. Canvas and Paint was in order...for a Celebration of Life on Canvas.

More to come...Hugs and Prayers.

Kerry

Roses , Thorns and No Regrets.

2009-04-07T06:57:00.000-07:00

Life is funny we always are told to *Stop and smell the Roses! Not a bad thing. Moving in to my second decade of cancer again I am a caregiver as well as the patient. Some how I understand how it is to be so sick and need help. I am blindsided by the thorns of how others could careless about the sick or those are healing from life altering surgeries.
Last week my Mom had her second knee replacement she is 79 and she has so many other health issues that they all play in to the issues of surgery.
My Dad is 81 and pretty healthy but still he is elderly and needs help.
Last week was a horrible week for them. It was one that I realized its just me as their caregiver and that's okay. Having to deal with my own health issues I was really struggling to.
My one sister came in for the surgery. She has her own health issues and never returned till Sunday when Mom was admitted again for further problems. My sisters words were very harsh for my Dad and I. Harsh words stuck like thorns.
My Dad called me due to living close by stating he was taking Mom back to the Er due to swelling and pain level being to high. He did not call my sister and she was so angry with him. Finding out he called me she couldn't handle that. What made her more angry is that he waited to call her and I felt that Dad needed me as a sounding board through the early hours so I told him to call if he needed to talk and he did.
But also told me to *Lay low and he would let me know when Mom was admitted* Which he did. I went later on Sunday after a few hours of rest.
Mom was sicker then a dog. They had given her a low dose of Morphine for the pain but the residual side effects for her was vomiting and diarrhea. Not being able to get outta bed at all. This meant bed pans and basins. The staff was great but very busy so I helped Mom as much as I could. At one point. She said in tears. * Your always right here for me and never complain.* I can't what would I do with out my Mom who was always with me no matter what.
Shortly after that Mom fell in to deep sleep .One that was much needed. For several hours. Shortly after that my Son came in and stayed and Hubby and I left.
Shortly after that my Sister strolled in complaining about not calling her earlier and slamming Dad as well. My Son let her have it. She has no idea what last week was like or any other of my Mom's surgeries in the last 10 years have been like. She was not here.
Later that night. My sister and her husband drove past my house and he got outta of the car with a single rose and an nasty note stuck in it. I couldn't believe you would throw a rose between the doors and then leave it with there. I noticed on the stem it was filled with thorns. As I grabbed it I felt one pierce my finger. Reading the note felt worse then thorns.
Then yesterday I got an email Thanking me for what I do...I was like What The Hell?
Written words can't be taken back. How do you thank someone after nasty words said in letter form.
Care giving to me is one of the most precious gifts we give to each other. I have cried a lot of tears the past few days. I don't think my sister will ever understand the hurt she has caused Mom ,Dad or me for that matter.
In life there are so many roses. I've always been close to Mom and she to me. So no regrets.Time spent with my parents has always been a blessing. Sure we have our moments but work things out always.
Just that life is so horribly short. Watching some waste it makes me just sad.
i just know that one day I will have no regrets when others will.

I'm off to smell the rose. Seize the Day. Kerry

Streams and Rocks

2009-04-06T13:35:00.000-07:00

In the confrontation between the stream and the rock, the stream always wins; not through strength, but through persistence. ~Unknown

I remember sitting on the edge of the stream taking this picture. Being mesmerized by the swift and steady movement of the water. I also know what it took to walk down to that edge of the stream. Something I could not have done a year prior to that.
Through this battle with cancer even through being stable. I really don't think of myself a strong but do think I am persistent as hell.
I also know a ton about confrontation and pushing through to get to a better place.
Nothing seems easy at times. Lately though stable its the long term issues I fight with and like other patients its hard to get a handle on things..when not even the doctors can at times.
I am being persistent about one thing and that's staying in the here and now. I need that right now. I can't go look back and I can't be in tomorrow. Making the best day possible is where its at.

Seize the day. Kerry

Good Question.

2009-03-28T11:12:00.000-07:00

Cancer always brings many issues. However the one thing it always brings is: To talk about it or not to talk about it. One thing I learned is that its thrown in your face while in treatment. But it doesn't silence when your stable and doing fine. Its a everyday thing. Is it a good thing to talk about it. Yes for some.
The thing I learned a decade later and as a long term survivor. Is that it doesn't come up ever day like it once did. That I don't want to dwell daily on it. Nor are some people willing to discuss it now. In their eyes its done its over with . In mine its always going to be something to deal with it due to it. But I don't dwell daily on it.
I guess the reason for this blog is because today I deal with some long term issues due to the treatment of my Lymphoma. There are many people out there that might have it and its not talked about nor is it one I knew much about when I was dxed. It took me a while to learn and understand what I was dealing with in the realm of what blood cancers are.
Talking about it journaling is one way through it. I also realize now the importance of writing and documenting the journey. I look back now and the calculated figure of time dealing with Cancer is 11 yrs 52 weeks and 28 days. Some crazy figure,after they told you have three months get things in order asap. God is good always. Being a survivor is the ultimate prize we work towards. I maintain stable as far as my situation with cancer. In talking about it with many I have learned we are all in the same boat. No one gets outta hear alive. Those of us with cancer just know it might happen sooner and we make the best of our days..knowing living in today is the best way to live.

Seize the day, its what we have here and now.
Kerry

RIP Lisa

2009-03-01T08:49:00.000-08:00

Sometimes we are totally touched by the impact of one person. Sometimes I think that you might never have the honor to meet them but through words and reading about their life. Its an honor to know them.
Lisa Kelly was like that. Her impact touched me to the core. (Her blog is at:http://clusterfook.com/)
Lisa passed away last week due to Ovarian Cancer. She was young and fought cancer,a threepeat. She left behind a wonderful husband Dude who has stuck to her like glue and two young daughters.
I guess if anything Lisa's would want all you ladies to get out there and get those yearly tests done. If there are problems go back and fight to get things straight.
Anyways in my daily blogging life Lisa Kelly will be missed. I will always take her with me in my heart and the lessons I learned from her.

Dark Places.

2009-01-17T20:07:00.001-08:00

One thing I hate is going to a place that is so low. One thing I am tonight is angry. I when that happens. There are many things since treatment that have happened. However I don't dwell much on it. I move on because like going to that dark place that exists.
Its a tough deal.
Thing to see me I look perfectly well but I'm not I have quirks that due to surgery and radiation to the head. I have to deal with them on a regular basis and that for me is tough.
I got weird headaches no one can explain but worse then that its the cognitive mess
in my head. There are so many times that I can't remember things or that I know I know how to do something and have to ask someone to help. Or I am sitting there and want to say something . I am blank. I know what I want to say and nothing comes out. Nothing and then...it does. It annoying let alone embarrassing.
Then there is the computer. Dang it that is the hardest thing. I get it down then something changes. I get annoyed and ask for help and everyone goes so fast and I can't. SO then I turn impatient and that is wrong of me. Its not that persons fault its mine. Its my limitations not there.
My computer is giving me a real hassle and its a really enormous challenge for me to try and figure out the problem. Plus the thought of it crashing with all my art work on it and photographs. This meant throw them all on flash files to save them.
I just got really annoyed at this super big chore and it put me in a rotten place and in tears.Not normal for me.
Most times I am great at going with the flow..but this is testing my inner strength I have to admit it. I have admit it would test any ones patience to a point. Even the most strongest and toughest.
I think the hardest part of what's left is that my family does not see me has having limitations. Plus I don't let it get me down on a regular basis but leftovers caused my treatment is not something we think about and looking okay. Some never believe were are sick as we say when treatment ends or long term survival is good. So why bitch or complain about it.
The dam sad thing is..cancer stinks the left overs for me are kinda of tough. Most days I m good and can push past.
Tonight is tough though I admit it.Once you have cancer its always with you. I hope tomorrow is a better day...

All I can say is ...Wow!

2008-12-31T13:38:00.000-08:00

This was emailed to me by a wonderful friend of great faith. And I think it is beautifully written. So I have chosen to post this because I don't want to waste my cancer or the life given back to me.

Thursday, February 16, 2006
Don't Waste Your Cancer
by John Piper

February 15, 2006 I write this on the eve of prostate surgery. I believe in God’s power to heal—by miracle and by medicine. I believe it is right and good to pray for both kinds of healing. Cancer is not wasted when it is healed by God. He gets the glory and that is why cancer exists. So not to pray for healing may waste your cancer. But healing is not God’s plan for everyone. And there are many other ways to waste your cancer. I am praying for myself and for you that we will not waste this pain.

1. You will waste your cancer if you do not believe it is designed for you by God.

It will not do to say that God only uses our cancer but does not design it. What God permits, he permits for a reason. And that reason is his design. If God foresees molecular developments becoming cancer, he can stop it or not. If he does not, he has a purpose. Since he is infinitely wise, it is right to call this purpose a design. Satan is real and causes many pleasures and pains. But he is not ultimate. So when he strikes Job with boils (Job 2:7), Job attributes it ultimately to God (2:10) and the inspired writer agrees: “They . . . comforted him for all the evil that the Lord had brought upon him” (Job 42:11). If you don’t believe your cancer is designed for you by God, you will waste it.

2. You will waste your cancer if you believe it is a curse and not a gift.

“There is therefore now no condemnation for those who are in Christ Jesus” (Romans 8:1). “Christ redeemed us from the curse of the law by becoming a curse for us” (Galatians 3:13). “There is no enchantment against Jacob, no divination against Israel” (Numbers 23:23). “The Lord God is a sun and shield; the Lord bestows favor and honor. No good thing does he withhold from those who walk uprightly” (Psalm 84:11).

3. You will waste your cancer if you seek comfort from your odds rather than from God.

The design of God in your cancer is not to train you in the rationalistic, human calculation of odds. The world gets comfort from their odds. Not Christians. Some count their chariots (percentages of survival) and some count their horses (side effects of treatment), but we trust in the name of the Lord our God (Psalm 20:7). God’s design is clear from 2 Corinthians 1:9, “We felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead.” The aim of God in your cancer (among a thousand other good things) is to knock props out from under our hearts so that we rely utterly on him.

4. You will waste your cancer if you refuse to think about death.

We will all die, if Jesus postpones his return. Not to think about what it will be like to leave this life and meet God is folly. Ecclesiastes 7:2 says, “It is better to go to the house of mourning [a funeral] than to go to the house of feasting, for this is the end of all mankind, and the living will lay it to heart.” How can you lay it to heart if you won’t think about it? Psalm 90:12 says, “Teach us to number our days that we may get a heart of wisdom.” Numbering your days means thinking about how few there are and that they will end. How will you get a heart of wisdom if you refuse to think about this? What a waste, if we do not think about death.

5. You will waste your cancer if you think that “beating” cancer means staying alive rather than cherishing Christ.

Satan’s and God’s designs in your cancer are not the same. Satan designs to destroy your love for Christ. God designs to deepen your love for Christ. Cancer does not win if you die. It wins if you fail to cherish Christ. God’s design is to wean you off the breast of the world and feast you on the sufficiency of Christ. It is meant to help you say and feel, “I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord.” And to know that therefore, “To live is Christ, and to die is gain” (Philippians 3:8; 1:21).

6. You will waste your cancer if you spend too much time reading about cancer and not enough time reading about God.

It is not wrong to know about cancer. Ignorance is not a virtue. But the lure to know more and more and the lack of zeal to know God more and more is symptomatic of unbelief. Cancer is meant to waken us to the reality of God. It is meant to put feeling and force behind the command, “Let us know; let us press on to know the Lord” (Hosea 6:3). It is meant to waken us to the truth of Daniel 11:32, “The people who know their God shall stand firm and take action.” It is meant to make unshakable, indestructible oak trees out of us: “His delight is in the law of the Lord, and on his law he meditates day and night. He is like a tree planted by streams of water that yields its fruit in its season, and its leaf does not wither. In all that he does, he prospers” (Psalm 1:2). What a waste of cancer if we read day and night about cancer and not about God.

7. You will waste your cancer if you let it drive you into solitude instead of deepen your relationships with manifest affection.

When Epaphroditus brought the gifts to Paul sent by the Philippian church he became ill and almost died. Paul tells the Philippians, “He has been longing for you all and has been distressed because you heard that he was ill” (Philippians 2:26-27). What an amazing response! It does not say they were distressed that he was ill, but that he was distressed because they heard he was ill. That is the kind of heart God is aiming to create with cancer: a deeply affectionate, caring heart for people. Don’t waste your cancer by retreating into yourself.

8. You will waste your cancer if you grieve as those who have no hope.

Paul used this phrase in relation to those whose loved ones had died: “We do not want you to be uninformed, brothers, about those who are asleep, that you may not grieve as others do who have no hope” (1 Thessalonians 4:13). There is a grief at death. Even for the believer who dies, there is temporary loss—loss of body, and loss of loved ones here, and loss of earthly ministry. But the grief is different—it is permeated with hope. “We would rather be away from the body and at home with the Lord” (2 Corinthians 5:8). Don’t waste your cancer grieving as those who don’t have this hope.

9. You will waste your cancer if you treat sin as casually as before.

Are your besetting sins as attractive as they were before you had cancer? If so you are wasting your cancer. Cancer is designed to destroy the appetite for sin. Pride, greed, lust, hatred, unforgiveness, impatience, laziness, procrastination—all these are the adversaries that cancer is meant to attack. Don’t just think of battling against cancer. Also think of battling with cancer. All these things are worse enemies than cancer. Don’t waste the power of cancer to crush these foes. Let the presence of eternity make the sins of time look as futile as they really are. “What does it profit a man if he gains the whole world and loses or forfeits himself?” (Luke 9:25).

10. You will waste your cancer if you fail to use it as a means of witness to the truth and glory of Christ.

Christians are never anywhere by divine accident. There are reasons for why we wind up where we do. Consider what Jesus said about painful, unplanned circumstances: “They will lay their hands on you and persecute you, delivering you up to the synagogues and prisons, and you will be brought before kings and governors for my name’s sake. This will be your opportunity to bear witness” (Luke 21:12 -13). So it is with cancer. This will be an opportunity to bear witness. Christ is infinitely worthy. Here is a golden opportunity to show that he is worth more than life. Don’t waste it.Remember you are not left alone. You will have the help you need. “My God will supply every need of yours according to his riches in glory in Christ Jesus” (Philippians 4:19).Pastor John

Sometimes there are no words

2008-12-03T21:23:00.000-08:00

I have really wanted to write about this for about a week but life has been so dam hectic.
Sometimes you can't stuff losses due to cancer down any more they just happen. Grief of lossing friends due to the same cancer as you have. That's something so hard to explain and put on paper.

Like me Judy was a mom.She had her own kids a large family she raised on her own after her husband died of lung cancer. She married again to her husband Jim. They shared 22 grandchildren together. They also shared this thing called cancer.

I met Judy on line in Dec. of 2004 shortly after she found out she to had NHL. A different kind but still similar to mine. In 2OO5 we talked daily sometimes several times online in a support forum. Then in yahoo and in emails. We also had the privilege to meet in Summer of 2005.

I was also so thankful we had the chance to meet if for a short time it was my pleasure.

In 2006 she would find out that the lymphoma was back. She was crushed me to but that didn't mean she wouldn't fight it . It meant a fight together, it was then we became more like sister then friends. IT was a tough road she did chemo and radio immunology. Then aggressive chemo therapy all of which was in a clinical trial.
Then November 27 of 2007 Stem Cell Transplant.

WE talked so much online on the cell phones and us to older ladies even learned to text message. Just so we could talk when she had the need.

December she did okay. However her Lungs were week from the Clinical trail drugs given prior to SCT. She had other lung issues as well. But she fought like hell till the end. January 30th,2008 Judy passed away surrounded by family and friends.

Ironically all tests said she was on a fast rebound blood wise. And no cancer found.
About a week prior to her death she called me and said she was Cancer free by all her tests nothing showed pertaining to the lymphoma.

So as hard as it was..she won...she beat it.

Death of another friend who has the same disease as you do is grueling. I have to wonder why I am still here. All I can say is that...I have not fulfilled my time yet. Is it easy no way. Its hard as hell and there are days that are still a huge struggle. We have lots of them, but we buck up and try like hell to stay positive.
That's not easy on a bad day. Its not easy to know good people have to have this bad thing happen to them that there is no control over it at times. It just is.

The one thing I hope is that I am half the person she was. I know I am forever changed by having her in my life...Sometimes its so weird, I have to wonder what all this refining and molding is about. It changes all of us no way around it. Making sense of it at times it really blows my mind .

I only hope if it comes down to it coming back again on day. I can rise to the occasion and fight it again. At times it all just seems to hard to think of and handle.

Sometimes its all overshadowed by those I care about loosing the battle we fought together. Its really hard to stay outta the vortex that creates

Just posting this don't feel up to writing tonight.

2008-09-27T19:33:00.000-07:00

Still waiting on some info

2008-09-20T11:41:00.000-07:00

Some good news on the lymphoma front. My blood work looks great. That's a huge plus.
There a glitch and that's that the b cell antibodies to fight infection are low. So that's a big problem. Just how low I am not sure. They can do infusion 's to help the problem but its not with out risk. So more to come on this.

Since its a mild issue showing in my 24hr urine. Oh yeah..I need more info. I can read the Lab Reports fairly well on blood work. But the other I don't know much. One thing I do know is that showing mild hypogammaglobulinemia is a issue if not watched.
Plus the other issue is: Is it acquired from the lymphoma or is there something else going on auto immune wise that we are missing.. Seems we are still looking at a immunodeficiency.

Anyways till he says we have more of an problem we will wait it out for the info.

This to shall pass with a new day.

2008-09-07T09:39:00.000-07:00

Sometimes I don't have the words to say what I feel or the say what the anxiety of a check up feels like.
Last week I got wind of a friend with lymphoma entering hospice. That threw me in to high anxiety. I have to say. I was really ticked off about it and so was Hubby. It just is mind boggling the fear that hits you, when you know that could be you.
So I was sucking it up and in as we drove in the valet parking. As my feet hit the floor of the interior halls of the hospital. I hate that. Its this intense feeling of anxiety that every cancer patient feels on a different level.
I hit K-13 the oncology floor. It hits me every time in a different way. Friday it was an intense feeling my blood pressure was soaring that it was. Through the stress I had forgotten my Blood Pressure Meds.. And of course that added to how crappy I was feeling. But still its like I can't breath at times or just seeing things so horrific..Its just a really tough deal when you know one day it can be you.

I went in and got blood work done and across from me was a man just starting treatment for NHL. I remember what it was like and how tough it was to sit wondering what a first chemo was going to be like. Wondering if you would live or die. As well as what that meant to his wife and girls standing close by. That just hit me and brought back so many things we have been through as well.

By the time I was but in the room to see the PA and My Oncologist . I was wasted. I was so glad my Doc was behind in so I could regroup a few minutes. And just sit and breathe a bit.

I love Carmen the PA. She is warm and upbeat. She has these dancing eyes that remind me of life. I don't know why her and I both connect in a way that is a comfort. Oh and of course she did my physical and it was good. She couldn't find much to complain about. Which set me at ease right away. We had a long discussion about the dental issues and constant problems of infections. It was all good then she went and talked to my Doc and he is to cute for words.He has this knack of knocking me back and making me feel I am this woman of good health. I had to chuckle all this and I a good laugh to. He to agreed it was a good physical.

However till he gets my blood work back for the Nhl and Factor V Leiden things are on hold. When he gets those back then we make the choice based on that whether I need a Cat Scan or not . Or whether we can wait till Dec to do so. Also a few other tests were done blood wise to make sure this anemia and other factors don't play into the NHL.

So the trip back in the realm of the sick was tough. Its a reminder of the importance of vigilance. Its tough its seems there are two countries sick and well. Sometimes I sit here and wonder about the white picket fence that sits in the middle. It seems its where I am stuck. Cancer is a beast that even when stable you know its out there. You always wonder about the what ifs. But isn't that life,its terminal no one gets out alive.

So for today I am going to paint,or take pictures and just bask in the wellness I have been so richly given for today. Enjoy the family around me and love the life I have been given.

I have cancer but cancer doesn't have me!

2008-08-31T19:38:00.000-07:00

I haven't had much time to write lately. Lots of reasons mainly because life is very hectic around here so no time for dwelling on things. In a way that's a positive thing.

Lately I have been addressing a lot of family things going on . But also things going on with me.

When I had my first surgery Sept 29, 1997 the preliminary thought pattern was that I had a form of Parotid Cancer. Just which type was not decided. Then I made a call to my surgeon about some issues with the surgery. He then stated that it was either Hodgkin's or Non Hodgkin's Lymphoma. He was waiting for the pathology reports to come back, but stated it was rare in that area. In passing he made a remark about my white blood count being to low from the pre op blood work.

One thing I realized back then was with a head and neck issue like mine was to see my dentist. Which I did.

Over the past years I have kept up with dental. Till recently when we lost our dental insurance when my husband retired. We maintained our medical which came out of our small retirement.

In March I realized I was in trouble and my teeth are becoming a major problem so I saw my dentist who I have had for twenty years. He treated me like garbage when he fount out no insurance. He dance around the fact that this was caused by treatment stating good luck on getting to be covered by medical. And so on and so on. He was down right rude in fact.

He gave me a referral to see the Oral Maxillo-facial Surgeon as well. I did see him and he to was very critical stating it was lack of care not treatment of cancer or radiation. I was slightly miffed. Plus he wanted to not talk about much else other then removal and only a few teeth at time to make sure I could afford it.

I had to laugh two teeth 720.00 with twilight sedation. Now if you need 10 teeth removed you can figure out the cost. Due to radiation he would not remove them all at once.

Needless to say I am miffed. Miffed that some one was extremely rude. As well as made the remark that I could not sustain the use of dentures or other reconstruction plans like implants, no options. None.

The other issue is I saw the dentist was treated for an infection. Then went on to the oral surgeon and was treated for a different infection. Four days later low and behold a female infection and urinary tract infection. So I wonder how they figure oral health of a cancer patient doesn't affect your general health when you have had cancer.

The other issues are of the nature of dry mouth ,swallowing issues, chewing issues, and speech problems since now my partial doesn't fit right now that all my teeth are just breaking and crumbling.

Plus do they really think its been easy to not only have all these head neck and oral problems due to the NHL. Which is very rare.

No they don't want info other then very basic info.

So I pulled out the big guns and talked to the Oncology Social Worker. Not an easy thing to do. I found myself getting depressed about things. Not a good thing. But its an overwhelming thought all of it. Then what about if the lymphoma comes back there goes the window of opportunity on getting it all done at once. So after a really long discussion with her and my husband we got a plan to work on getting the Medical Insurance. As well as all my Doctors sending letters to the Medical Insurance stating its Medically Needed and Related to my NHL. I even went so far as letting the Social Worker take a look see. She agreed we are dealing with radiation
and treatment hitting me full force orally. Ironically with it all going on no pain. Thank Goodness. But that can happen any day.

So as of now we have decided to head to the University of Detroit Dental School. All my Doctors want their opinion. Also they have stated that that is a good place to get it medically covered. Plus they will look at income and financial assistance due to my medical situation.

Also there was some sort of Conference on Dental Care/Oncology & Cancer Patients in Michigan this week. I said * If you need and example count me in.* Due to my case being rare. She agreed people just do not understand how treatment affects the teeth and the damage that can be done.

So lots is going on and we wait to see what happens. Its a lot though but I fought cancer head on so as we go this will be fought and done to. The dam thing of it all. Is not everyone in this country had Dental Insurance. The minute both of these guys found out. It was totally different treatment. Unfortunately that's how it is. IF you have had cancer or dealt with it for a long time the cost of medical care is astronomical. I won't even go into what we have paid outta pocket over the years. Then to have them look down there noses at us its sad. It made me feel horrid Hubby to.

So as of now we are in the Market for a new Dentist and Oral Maxillo Facial Guy. I can work with people that don't have compassion. I don't want fluff but a straight shooter who will take me from start to finish with a plan. One thing I have learned as a cancer patient is you need a plan with hope to move on and forward. That said. I will be moving forward this week after a few more calls. As well as my yearly check up with my Oncologist Sept 5th.

So once that appointment is over and tests. My Port is history as well.

So a lot on my mind lately but it will work out and I have hope it will!!

Yuck!

2008-08-14T22:00:00.000-07:00

Yesterday was a tough day. I just couldn't get a handle on things. I don't know if this a flu bug or what. But will see later in the morning where we stand. Hoping some more sleep takes care of it. UGH~~

Sighs!!

2008-08-10T21:41:00.000-07:00

Lets just say I am really miffed with my sister for now. I don't understand what she doesn't get about my disease and possible bone marrow transplant in my future. She is my donor and still no understanding..or compassion. I don't get it tonight. NUF said.

Letting thing out as we go.

2008-08-01T20:05:00.000-07:00

This will be a long post. There are so many times I need to sit there and just put things in perspective. Today was one of those days.
Today was the an aniversary of sorts. Its hard to explain but I will. I think I just need to get this out and let it all go.
Eleven years ago today I met my surgeon. Now one would think why is that a big thing. I realize God is ultimately the one who puts people in our paths. Whether we notice them or not or the ability they have thats a whole different thing. Something I did from the start was feel and aura about him. That things were going to be okay.
Today was a tough day here is why. I listed on my other blog that my Hubby was having a consult with my surgeon for surgery he needs. Today of all days.
Driving there wasn't bad. But the only time I saw him at this center the surgeon.Was hearing the words I think this might be some form of cancer. So sometimes the anxiety that comes with it resurfaces and you can't stop it . It just is what it is.

We went in Hubby had his consult while we were waiting and had to get xrays all of it. Just things were hitting me left and right. Then it hit me today is the day. The surgeon even looked at me and said after talking to my Hubby isn't it almost 11 yrs. I about feel off the chair. I had to collect myself again to talk to him. I am so grateful to him for so much its amazing. I am still in awe of him and his abilities as a doctor. He is a healer in all the sense of the world. I don't think without his kindness and compassion the outcome would of been as it is.

One thing that was disheartening was as much as Hubby needs this surgery its elective and until we get his blood pressure in check again . No surgery. He kinda put his foot down and said get this fixed to Hubby. So on the way back to this side of town we did stop to see the primary about that and got his meds straight and adjusted. Thank goodness there was a drop in the bp or he would of been in the hosptial for observation. So it was very stressful.

We talked alot about things and we had a discussion. About how cancer is in so many ways and how life altering it is and how as things change and it you start to feel better its like emerging in to a new world. Its odd it really is. Here I have this incurable disease. They told me I had three months to live. And here I am. So many things changed.

You talk about for better and worse as part of the marriage vows. That is something that is just so hard to fathom for some just how bad things can get and people still stay together. But today I realized there is a new found relationship between myself and him emerging to. That is something. Its a level where so many things others talk about becomes so trival. We both really are just amazed about the stupid stuff people worry about. And the things. This the society is so thing driven. We are not. We lead a simple life of what we have and its not much. But the importance of those who enter here is what keeps us both grounded.

I am sure there are many out there dealing with cancer as a couple. One thing I realized I am hearing so many say this is my money and her money. I have to laugh with us everything is ours. Thirty years later its still ours. What we have is God given and blessing I truly beleive that.

So today. I had a few times where I cried and I mean a good cleansing cry. I gotta say that having a stable situation in my case is a gift. When your have a incurable disease I think you go in stages and levels to grow through it. I am not sure thats how to explain it .But we both know its a new level of caring for each other cause of what we have been through. I am so thankful I went though with my best friend. Had it been different I am not sure how it would of turned out.

Today reminded me of how good God is. It reminded me of what we prayed so hard for just to get to a better point. Life does happen with cancer in it. IT swirls around us like dust in a whirl wind. Some would say how in the heck can you do it. You just do and run with it. One day a time. Praying to get to a better point.

Amazingly you do. Amazingly God provides healings in many ways. I don't think I got everything I wanted along the way. But I do believe to that God, has His way of getting us there pre planned. So learning to just roll with it at times helped.

Today was one of those days of rolling..hitting a few speed bumps along the way. But thats okay to . You just pick yourself up and move forward one step at time. Knowing that He is in charge. I am so thankful for faith in all of it. I simply have no clue how those do it with out it.

Sleep well....

Surviving

2008-07-29T06:59:00.001-07:00

I have been sitting here the past few days, doing a lot of thinking. Due to the years with having cancer and the type I have. We took risks to get to a better point.
I have to think at times the benefits were great in the risk. But in so many ways blessings were incredible.
Some how taking that risk meant taking control in my fight against my own cancer. That made me a survivor not a number. I dug up lots of facts and went back and bugged my doctors. I realized early on that there are doctors who care and those who do not. I also learned it was easy to move on to ones cared to, to obtain proper care which I so rightly deserved.
Cancer for me was a life and death experience.My cancer and type this was potentially fatal that forced me to take the bull by the horns and take control of whatever I could in my situation.
This thing that hit me in the gut was life changing.So much to learn about it. Its been just about 11 yrs since I saw my first surgeon to talk about the mass on the left side of my face. I continue to this day to research and stay on top of things pertaining to it.
What kills me is that in this country people spend more time researching what kind of care they want to drive not health care. There are still people to day with cancer that do not want to know about it or its treatment. Lets just do it, I trust you and get it done. Not me I want to know everything going in my body and the aspects of what it could possibly do to me.
I encourage any one with cancer or a loved one with it to learn the terms, learn all you can about whats going on with what ever cancer you have. Ask questions, you pay to have them answered as well as asking about what options are out there. Know them learn about them.
Sometimes I sit here and am in awe of the struggles that came with it. This is a personal account of a life and death experience. At times you fight so hard you learn your not alone in the fight. Sometimes you wonder is it all worth it the fight. When your that sick so many things go through your head and heart.
Epilogue....
Laura Landro, in her book, Survivor. Is right. *Returning to your regular world after surviving cancer is much like reentering earth's atmosphere from space. It takes a period of adjustment before you can resume normal life,and your journey has opened your eyes to things most of the people you encounter will never really understand unless they have been there.*
She is right on the money with that. There are times now we relax and times we don't cancer is like that . Having it barge into your life like a speeding freight train. Then you are stable and things change some what. But I don't think you ever really relax totally.
This month I have stayed in contact with my Oncologist due to some long term effects going on. You have to understand I have been seeing him since 2002 so its a long term doc patient thing but after a while you get to know the person under the white coat. There are life stories exchanged and we laugh. And yes I have cried to at times. But all and all..
I am not sure I will ever totally relax health wise again. But I will be grateful for the knowledge and caring people who got me to this point. As well as God's guidence on all of it.
I have this third chance at life...yup you read that right. I plan on being vigilant about protecting what I have been given. The fear about it never goes away some say.
but with being vigilant that helps me.
One thing we have learned its okay to really enjoy the gifts I have been given. Even with set backs life is good. Its okay to feel it all. Something I would of never taken the time to do before cancer.
Life truly does go on even with cancer in it. I am so thankful for realizing that early on.

Stigmas

2008-07-27T10:24:00.000-07:00

In this society there are many. Sometimes I just wonder whats really on peoples minds.
Last week was a very hard week. Needless to say its not just about me. It's Hubby's health as well as mine. Its almost mind blowing at times. Just how much happens in a small family unit.
I know we are not the only ones out there husband and wife dealing with cancer. I know that or parents either. Just amazes me as much as write no one says a peep not one comment.
We don't bite, because we are dealing with cancer. You can't catch it if you post here.

Amazingly there is still stigma's about it and what it brings to a person.

Sad really it is 2008 and there are many who are out walking around you every day who have dealt with cancer and you might not even know it. Someone you work with. A Mom who just had a new baby. A young woman getting married. A dad out skateboarding with his boys. A grandma like me helping my grandbaby toddle around and showing her the world, seeing the world through the eyes toddler once again.

If you saw me you would never know. But if I told you what would your reaction be?

I hate the stigma against normal people with a disease that is so rampant in this country. But everyone is so scared by it. Cancer is that a disease today people survive and are making a life. Just like we are.

Is it easy living with the way others think? Nope.

What if I said...Cancer isn't always a death sentence? It isn't for some.

After all I am still here. So are many.

Stigmas. Old thinking. Really old. Not every one dies of cancer. Some yes many have yes. But what happens to people like me. Who are living proof the old stigma isn't always true?? I am.

Anyways. I think people really need to understand with modern medicine and new technology people with cancer live being treated with this chronic illness we call Cancer.

Stigmas. Lump a Cancer in the relm of one disease. How is that when its many?

Anyways I am tired of the Stigma that comes with it. I am not dead yet and don't plan on it any time soon.

This is 2008 and there are many survivors walking around getting on with daily life.
I know thats my goal one day at time to make it the best life possible.

Bone issues keeping me up nights.

2008-07-23T17:27:00.000-07:00

Today is hump day! I think Monday and Tuesday caught up with me today. I did a lot and thats what happens at times.
Last August I took a good fall down the stairs. Messed up my right hip leg and fractured my ankle in two place. Totally messed up the lateral ligaments. Between the er and orthopedic docs. We finally got things taken care of and to the point of healing .Then we did rehab to get me up and walking again.
One fracture the third was one I never knew about which suggest along with being osteo penic. I more then likely have the starts of osteo porsis as well. . My first bone density said no. So I am having that redone shortly to see where I am at with that. The baseline test is good and will be helpful for the changes. And yes it goes back to having treatment three times.
I don't want to think more rehab but if thats the case to be up and walking we will do thats needed. However with my fatigue level rehab was really tough and was a day to day thing on how I felt. So its workable.

Last night was the first night I had to take a vicodin in a while. Of course that hit me like a ton of bricks. Like most things do. So I have been really low keyed all day today. That stuff knocks me for a loop big time.

So we will see what happens I guess. Its frustrating at times. Just the things that are due to treatment. I would of never guessed some things even with all the education I had from my nurses and doctors. IT amazes me that still they do not know everything that will happen. Everyone is so different as is ever disease even if you have the same is the next person.

Anyways thats it for today. I am off to rest.

2008-07-22T21:20:00.001-07:00

I have been sitting here wondering why bad things happen to good people. Sometimes it just seems some people are swamped with things that are all consuming and complicated.
Then others skate though and life is a breeze.
I just have to believe that God has a plan for each and everyone of us.
Lymphoma has really touched my life in so many ways. If I sat here the list grows daily in those I know dealing with this form of cancer. Each case of this disease is so very different. There are many forms of it and many age groups affected my it.
The form I have SLL however so much about my disease is insane. I ended up with a cell make up of four different lymphoma, one of the four very aggressive,always in the bone marrow.
Remembering back the tough thing was knowing there was no a donor. But also knowing the prognosis for me was bad. Hearing you have three months is a tough deal. Back then there was a chemo called Chop and that was the basis of my treatment or so they thought at first. When they found it was in the bone marrow. The made a change to the drug Fludarabine. Which at the time had just came outta phase three clinical trials at Cleveland Clinic. I remember getting my second opinion which was exactly as the first but there was talk of the newer drug and one drug therapy. By the time we drove home got in the house , my oncologist had called and mention this new drug. We had a really long talk about kicking the bone marrow back to the stone age and just hoping and praying it would work. I was lucky after six months of grueling treatment, I had a partial remission. That provided me some time while they searched for a donor.
But that was not good none out there.
Ironically after all of that my disease came back in 2000 and was treated again, but then to we only received the word that it was a partial remission. It was tough and we had learned a lot about it and we decided the knowledge was with Man Upstairs.
Shortly after that my oncologist sent me to talk to the bone marrow specialist at Henry Ford Main. My disease was still in the area of the adrenal gland.
By 2001 I had an area starting to show up near the small bowel and pancreas. This was a big complication. Lymphoma is weird it goes where ever the blood carries it.So it can go any place. A few days later I found a lump on the back of my head while washing my hair. This totally freaked me out. If you read the story on the side bar. My case is rear because the first presentation was in the parotid gland area so that to is rare in so many ways.
With in the day I saw my oncologist who basically was freaking out about things. Normally he was so cool and collected. But he wasn't this day. He was worried about vascular involvement and other issues pertaining to the head. Luckily God is good It was small not on the skull and that was a positive thing. Radiation a form of it could kick.
To be honest. We embarked on so much the third time. The hit me with low dose radiation to the area on the head . Then more testing to see where we stood. Nuclear meds, pet scans, bone marrow biopsies and just all of it. God is was good as the bone marrow was clean bilaterally. Which opened us up to enter a clinical trial of Leukine and Rituxan. I was blessed it worked. Amazingly the Adrenal Glands were clean first time ever as well. But it was a very rough stretch to get to this point of clean.

But to wonder why something so hard and horrific has to happen. Some tell me growth to see how we handle things. Some tell me thats just life. But I think its the first. God doesn't give us this a punishment. But I think its to make others stand up take notice and grow in Him. I know one thing I had faith going in. As did my Husband and its just made it all the stronger. As well as our relationship.

I just can't help but wonder though why things get so complicated for some people. Its almost gut wrenching at times. The people I have met with lymphoma and other blood cancers, are just like you and I normal every day folks who just are living live. The sad part is that cancer is tough and hard on families just like any other disease. The tough part is when other health issues enter in..with it then it gets so complicated . It makes me really wonder why some have to endure so much. Why we have to endure so much.

But then it all relates back to God has a plan and we just need to trust in Him.As well as the knowledge he gives to others working in His behalf.

There is no other way to handle it.

Thanks I needed that.

2008-07-21T08:01:00.000-07:00

I know, I know. Some times I guess you just have to go with the flow be a better person love the person and let God have them.
Amazingly what I find funny in life is once you have had cancer and your doing okay. I won't say I am doing the best either. But people assume many things, the biggest thing is that your well and fine.
It doesn't matter where you are in surviving. They look at you and say wow she looks good so the cancer isn't a issue any more.
Wrong to assume.
Recently I have some family that is giving me fits. All I can say is I am doing the best I can for today. Which some days are good day and some days purely stink. I don't complain to anyone. I just go about my business as I can when I can. Why complain it doesn't pay off and who listens anyways.
The fact remains I am a mom and wife who has had cancer not once or twice but three times. I don't know what my future holds.Terminal disease and it suffering turns up when it pleases. But I do know that I will keep on doing the best I can with what God has given me. For now.
Some people just really need to get a life. I love mine:)

Large Elephants

2008-07-13T21:43:00.000-07:00

I think most homes with cancer in them have that large elephant in them. Those who say they don't well. I don't believe it. Ours resides under that proverbial carpet.Sometimes he is still and other times he rears his head just for me to notice he is still here.
This weekend I got ticked off about a few things.One being that Hubby was tired and I can tell cause he is short tempered with me. I get snappy and not a good thing. It always reverts back to my lack of energy. This weekend it came back to a remark:
"What have you accomplished to day!" That really cut deep. I retorted in: *I woke up alive and didn't complain about how crappy I really feel.* I was hurt and I know he was to.
We made up to. But this dance is tough at times.
What made it worse is that I know I can't do this or much of anything some days with out his help. That really gets to me. I want so badly my old life back. But that's not going to happen. Its not. Its just taking this one I have,adjusting the one I am have been given and moving forward day by day . Not much I can do about it.

Now about that elephant. I don't like him much and his feet are all stretched out. Hanging outside, tripping me up in emotions at times. I don't like him much at all these days.

Just some thoughts

2008-07-12T13:03:00.000-07:00

Our knowledge of cancer is ever changing.Living in a time when things have changed so drastically in its treatment.
One thing I feel today is a razor sharp awareness in appreciating day to day life. Some how that happens with cancer.
I could sit here all day and complain I have to deal with cancer the rest of my life. But it solves nothing. I would never choose to have it. Don't think anyone ever does.

I do love my life better now even though I know one day cancer could be my demise.I don't sit and think about that daily any more.

Although most think I am back to a normal life. That's a great thought. For most of us survivors long term, its impossible to go back to how it was prior to cancer. Simply to have a normal life after cancer or to be stable for a time, means to take the changes inner mingle them with your cancer experience.

Life does move on even with cancer in it. That is a good thing!! Trick is to grasp it , and move forward with it.

Its hard some days. But that's what we try to do daily.

Life 112 Thoughts.

2008-07-04T14:02:00.000-07:00

Yesterday was a day of some reflecting on things. What brought me to reflecting was a simple thing I did, I got a hair cut. Something so simple brought back a flood of memories.
Growing up as a teen I was known for the girl with the hair. I had long hair that was curly and in the humidity it grew. No matter what I did. Thats one thing I was known for.
Then I got cancer and I was known as the women with the large smile and bald. Funny how that happens.
So over the last few years I grew my hair out but it was way different straight as an arrow and *Cher hair* No other words discribe it.
If you have no hair any hair works. But one thing I learned is hair is secondary when it comes to loosing your life.
One thing I was reflecting on was this. I though I am stable with a terminal form of cancer. I have been thinking about it alot. Cancer can leave your body. But it never leaves your life. It hangs in the balance, just there. While I move forward one day at time I have more days that are with out it. I can't seem to forget about it.

I wonder does anyone??

Maybe thats the gift. Not forgetting about it. It takes time I guess to realize thats part of of the growth that comes with it.

Breathing

2008-06-30T14:39:00.000-07:00

Today was pretty busy. But this damn asthma is driving me nuts. Whats worse is people who smoke. They can't smoke in a lot of places around here now. So they hang out, outside and smoke up a storm and go back in. OMG. I am not kidding its happened to me several times where I walk through the smoke and just about die from it. I simply can't take it right now.
Due to facial and neck surgery its really hard to muster up coughs in the first place. Then to boot a chronic cough when the asthma kicks in. Not fun. Its scary for those around me cause I sound like I am hacking up three sets of lungs not one.
Today they upped my dosage of Advair and i am still on the Ventolin as well every four to 6 hours as needed . But its weird cause its every 4 for now. So hoping the the preventive meds kick in and do the job soon. We will see. I do love to breathe:)

Other wise it was a great day. It has finally cleared off here and is sunny and blue skies.

Think I will grab the allergy meds and head outside on the patio for a bit. To nice out to be staring at the screen.

Hugs and Prayers.

A Quite Sunday.

2008-06-29T11:43:00.000-07:00

Today I woke up tired even though I slept in. I am just stuck in a cycle of fatigue.So that said. It means going to bed earlier and naps again. Although I feel better physically stronger. Its part of my disease that I deal with daily the fatigue and the chronic part of it..One thing I hate the most.
Today we are having a BBQ and just goofing off with our Kids and the *Wee One*
Luckily I don't have to do much but be there!! Which is good thing! Hubby cooks I relax.
Just praying for no rain..at this point. We have had enough of it here.

Bittersweet At Times

2008-06-28T13:29:00.000-07:00

This time of year for me brings a lot of thought to the cancer journey. As well as what things mean long term to our lives.

Things are very different now that our children are in there twenties and we now have a grandbaby. Things are way different then when we started the journey our when one was 11 and the other two were teens 13 and 15. We also had a nephew in and out most of the time. So it was very hectic. At times I really never had time to think about being sick or did I at certain points think about years ahead. I just never had the time. Probaly a good thing.

One thing I learned that having cancer is that my Kids kept me in the land of the living. I really didn't get time to dwell back then. I think I do that more now that they have their own life's away from here.

My Daughter now has her husband her baby. My oldest Son moved back home and is out more then he is here.The youngest Son is at college in and out all summer, then heads back for good in August.

So life is very different now.

The other thing that weighs in is the Grandbaby a huge blessing. However I get really exhausted after a few hours of her. I really have to conserve energy before she comes or I can't handle her even with help.

The long time fatigue is the pits so I am resting a lot.The other issues are the bone issues I am having lately. Along with constant issues with infections and long term antibiotic use. As well as the asthma issue that of course would require steriods as well at times orally or inhaled. Not breathing well stinks at times seems lately takes so little to spark a issue.

I am scheduled for a bone scan and new bone density test to compare the last on. On the osteo prosis due the steriod usage..Oh joy. Plus the fracture issues of last summer seem to be still a issue. Long as I am not on my feet all the time we are good. But the second I am we are back to icing and the thoughts of more Rehab and
PT. UGH! Oh yeah the PMFT to due to the asthma..Oh Joy!

Then all the oral/dental junk..isn't resolved so working towards a better place on that.

More appointments the first few weeks of July...Just another reason why I have to rest up.

Its good to be in a stable place its just all the long term things getting to me at this point.

2008-06-27T04:40:00.000-07:00

Life111 Good Friends & Cancer.

2008-06-26T18:14:00.000-07:00

Many years ago when my Husband and I were first married we lived in really large appartment complex.We lived there a few years and had our first Son there. When he was born we moved to a from a one into a two bedroom. Large enough at the time.
One of the reasons was my Husband was laid off from work and he worked for the maintance dept there and me I worked in the rental office helping the managers who were friends of our family.
When we moved we met Jerry and Mimi. Jerry was a kind man who was crazy he could make the saddest person smile and laugh. He was a great guy but at times drove us all nuts. With his antics. Mimi was a soft hearted, and she kept him in line.
It was a great time in our lives I was pregnant with my Daughter and Mimi was as well with her oldest son. One thing I remember when my daughter was born. Jerry coming to the hospital and teasing the crap out of me. I will always remember him being so kind when our daughter went to the same NICU A month later their Son was born way to early and spent time in the same NICU. He was so tiny but healthy.He was there for some time then came home and was hell on wheels.
Durning the time my Hubby went back to school to be a EMT. It was late nights of studying and quizing him. Life was tough back then. But thinking back some of the best times.
My husband soon got his EMT's license. Jerry mentioned there was a job for a EMT at the Army Base where he worked.Jerry was a Cop and loved his job.My husband went there and applied and got the Job as a Fire Fighter/Basic EMT.
It was two days before Christmas and three months till before our third child was born. A Son.

Shortly after that we moved to our first house and more room. But we never lost touch with Jerry and his Wife.

Three years ago Jerry died due advanced lung cancer. That death rocked his family and all his close friends.

Today we went to lunch. We ran in to Mimi and her closest aunt. Jerry's favorite one to. It was good to see her again . Although she is now retired she wished she had done that sooner but thankful she had work as she went though the cancer experince with Jerry and their two boys.

Its funny I do fine when we are face to face. But I get in the car and get this horrible twinge of survivor guilt where my stomach is in knots. Today I know Hubby was feeling the same thing. Jerry was his best bud.

There are times I really really hate cancer and some things it brings us. Mainly the loss to those so dear to us.

I decided tonight that Good friends are never replaced,but always in our hearts and memories. Its funny I remember Jerry just teasing me so bad about being bald. Later on I recall the noogies given on his bald head and telling I need sunglasses to cut the glare. We all had a good laugh and thats what friendship is about being there when things are good but sticking in out when things really are going down hill fast.

Would I have done it any differently? Nope.

I just wish sometimes that all of us were a oblivious to cancer and its wrath as we once all were. A much simpler time back then. Thank Goodness those sweet memories. As well as new ones with his Wife and Boys.

Its hard sometimes just being a patient. You just know and it hard to erase what others go through.Even if your physically not there in person. Nothing stops what you feel for others that are dealing with cancer. The bond is tight and as it should be its only those who have been there or are there who know.

It's a hard thing to explain to those who have not. Sighs.....

Life 110 Being Positive with a Purpose

2008-06-25T11:50:00.000-07:00

Living life with cancer in it is a tricky thing. One thing I have learned along the way is to accept what I feel and felt,even if it was negative. Simply because its part of the whole cancer experience.
Everyone in my family went through times of struggle and each is vaild. My Husband my Kids all of them went though something. I learned early to accept each one as they came along and validate them.
From there we kinda moved on.
One thing I never realized about me though was that I did not stay angry or sad for long as I didn't want to bring that to my family. I shoved it down and held for the alone times and let it release then.
Is it normal to be angry or sad or just plain ticked off when you have cancer.The answer is yes!! And other feelings might come with. As well as depression. I have had my share of that to.
One thing I learned a long time ago is to surround myself with positive people who offer hope and care about us and our situation. Anyone Negative or in Denial was not a good thing.

The other thing I learned along the journey is there are many forums to help cancer patients. There is a lot of support out there to help. Over the years I have met a lot of patients locally and online as well. One thing I have learned is there is strength in numbers and knowing others with our form of cancer is a good thing. Other positive people in the same situation is a great thing.

One thing I realized to is the funnel things in to a positive thing that is one thing that keeps me moving forward. Whether its helping with support groups or getting out walking and talking about lymphoma its all positive. That helps me to maintain a positive attitude.

My Husband feels the same way. Its hard enough to deal with the medical and finacial end of all of this. So getting out seeing those who are helping and in similar situation is incrediably helpful in so many ways.

Purpose shots us in a different direction on the journey. It gives us direction to guide and help others in the same situation. That in itself is priceless.

Go out and make it a great day!

Life 109.Patience.

2008-06-18T08:10:00.000-07:00

I was doing a blog jog this morning. The stories out there are captivating.So people are really battling for their lives and amazingly patiences is a tough thing for most while waiting for Info on cancer or be it any medical situation.Its funny one thing I don't have is patience.

Patience (ˈpā-shənz) is the state of endurance under difficult circumstances. This can mean persevering in the face of delay or provocation without becoming annoyed or upset; or exhibiting forbearance when under strain, especially when faced with longer-term difficulties. It is also used to refer to the character trait of being steadfast. Antonyms include hasty and impetuous

Yep, I looked it up. One thing I realized lately is I am a realist.Yesterday is over. Today is here and now right here in our grasp. The future is fine on its own. I am not there yet..I want to be but planning so far ahead,for me well I don't. I use to but right now I just love today. After all thats all we have is the moment and today.

As for patiences that virtue I am working on. Its a really tough one. I get in to a bind when its my cancer, or I want something to be done right now. If I have to wait its so frustrating. I have to keep busy and just be with those I love and those who love me. The rest then falls in to place.

Waiting and waiting to know things is tough when its medically. I really have to work on the that thing we call Patience.I think for me whats the hardest part is watching those I love wait with me. Its not just about me. That makes me impatient. I just don't want them to suffer either. So maybe thats part of it Not sure.

Sometimes I wonder why I can feel so at peace on some things. Then on others I have not one stitch of patience at all. Like many today thats something I really need to work on!!

Life 108 ..My View.

2008-06-17T11:48:00.000-07:00

Fear is a great motivator. When I found out I had Lymphoma back in 97, I remember it like It was today. I remember to them saying how bad it was and just how long I could have. It still blows my mind. I remember my doctor his face, my Husband. I remember the nurses trying to tell what was going to happen. I remember walking out in the fall air and the color of the leaves on the trees. But the thing I remember the most was my doctor saying I could die by Christmas with out treatment. I remember being angry and upset. Thinking I was not going to die. Amazingly I didn't but still the reality with cancer we know people die. Had I known what I know now that I had a 10% chance of making it. Who knows what I might of felt. But my doctor offered hope.

The big C!! People are still so scared of cancer thats how they still refer to it today. Cancer many different diseases. Not just one. Its many!!
What scares me more then cancer itself. Is the lack of wanting to know about it. People are still so afraid of it. Why is that?

The old stigma is still alive. If you get the Big C you will died. Not always true. What if you get it and you live?? Like me and others out here. This is 2008 and people do die but many live and go about life day to day.

I could know 20 people with Lymphoma and it not be the same cell make up as mine. Although they have lymphoma. Non Hodgkins is a many diseases in one. So many variables.Four stages with differences in each person. Then three grades of which are all different. Outcomes all different and each person very different from the next.

My surgeon was a good guy. He told me I had lymphoma just what kind he had not gotten the pathology back. That he would be sending me directly to my Oncologist. Who with in less then a week had me doing all kinds of testing and a bone marrow biopsy.With in a matter of 2 weeks we had all the info we needed and I was able to get my second opinion as well. I had to wait for my surgery site to heal so that held off treatment for four and half weeks. My biggest issue is that I had bone marrow involvement and no donor. So that meant aggressive chemo to try and get things in check.

One thing I learned right off the bat was to stay positive and not make cancer my whole life. Life goes on even if you have a chronic illness. I prefer it goes on with me in it. Having Kids kept Us In the land of the living. It wasn't easy by no means.
But I wouldn't change any of it.

I don't think anyone wants cancer. I know we sure didn't in our lives. But would I be the same person today, if that part of my life was gone. I don't think so. One thing I went in to it with faith and experiences of many other things. Thats positive. I think in some aspects, cancer shows us the best and worst of times. It sure taught me a lot about me and my Husband. It strengthened us in so many ways.

The other thing is it taught many people, those medical professionals who do not believe in miracles that they do happen. I am proof of that. Doctors work is a science. But some say they need help and prayers. So thats what we did we prayed a lot for our Doctors and those who surrounded us with their care. I can not write here the total experience . Just surfice it to say when we first starts out our vision was limited. But I did know of survivors so that was hope. Hope is a wonderful thing it opens up things that feel huge.With Hope as I found others with Lymphoma things lessened some.I grew in many ways.

Today its almost eleven years later.We never imagined life would be as it is right now. We still have hurdles but we *Keep the Faith* and stay positive. I really believe those are the two things that brought us here.

Some say Lymphoma is a easy cancer or the best to have. We are here to say,some lymphomas are good to have.Slow growing ones maybe. But aggressive with wide spread disease as mine was. Often are deadly. We have seen some who live for years.And others who last a few months. Good cancer cause lots of research is happening and thats positive. Lymphoma is very treatable that's what we were told, like any other chronic disease.My Doctor gave me one gift, by telling me in the beginning it was a chronic form of cancer. So thats how we looked at it. Something we would always deal with.

So is the worst thing No. Is it the best No. Heres a thought ever read the book.Tale of Two Cities?* by Charles Dickens? To paraphrase Charles Dickens here it is:
*It was the best of times, it was the worst of times. The worst physical pain, anxiety and fear, so many things hard about it. The best of times because of the sensitivity ,love and compassion .So many had hope and prayed to God for Us. God's grace and support and prayers of so many people. While not ignoring the bad or worst,now we reflect and focus on the later. Reflection is a wonderful thing. It taught me that there is good and bad in everything its the always present human condition. At times we just have to let go and give it completely to God and let the good prevail.*

These are thoughts that come from the experience of living with cancer.

I have cancer but it does not have me!!!

Make it a great day.

Life 107

2008-06-16T21:59:00.000-07:00

Not to much to report today. Husband is now sick. He has been running himself ragged taking care of things for me and around here. So today I said thats it and made him go get checked out. He has a good sinus infection going. So stopped to get antibiotics and other meds for him.
He also listened to my right lung. Still wheezing. So they upped my advair for the asthma. So we shall see how that goes.
But on a good note. My cough is a ton better and so is the congestion that comes with bronchitis. Its all doable.

Need to get up early and do some foot work on a few things.

Just A Poem . I recieved from a friend

2008-06-14T11:03:00.000-07:00

Hope Happens!

Hope is what happens when you first see a light.
Just a distant small star in the darkest night.

Hope is what happens with the first bud of spring.
When dawn touches the sky or the bird spreads its wings.

Hope is what happens when a wound starts to heal.
Whether its skin deep or soul deep,you begin to feel real.

Hope is what happens when you're poor but not broken.
There's a goldmine in dreams-just not yet awoken.

Hope is what happens when someone is kind.
A feeling not lost -just misplaced in your mind.

Hope is what happens when war turns to peace.
After everyone prayed that the fighting would cease.

Hope is what happens with the smell of fresh rain.
When your long time drought of dreams is renewed yet again.

Hope is what happens when clouds finally clear.
Troubled thunder falls silent-courageous whispers you hear.

Hope is what happens when your heart skips a beat.
And , so least expected, a soul mate you meet.

Hope is what happens when fresh bread is baking.
And, what hungers your heart, will one day stop aching.

Hope is what happens when kindling ignites.
You rediscover your passion burns all day and night.

Hope is what happens when the pain eases a bit.
And deep down in side you find true grit.

Hope is what happens as long as we breathe.
For although it takes time, the sorrow will leave.

Hope is what happens long after the pain.
Hope is what happens --again and again.
Written by Catherine DeVrye
Book: Hope Happens!

Life 106

2008-06-12T08:23:00.001-07:00

Lately the true meaning of what being a parent with cancer means. It means that sometimes your a better caregiver to everyone else but yourself.

I don't mean that to sound mean. Just that as a mom or a parent its your job to care for others and make things better. Sometimes you just can't it hard to watch and not be able to say a much. All you can do is be there for your kids. Thank God that you are and thats about it.

Having cancer yourself means you have to take care of you to! In ways you never thought about before. Takes a while to do so for yourself but you learn.

Something else it taught me is to take today, make it the best you can make it. To take each day one day at time. To take no one for granted. No regrets.

Its helped me elimate things that don't mean much and to the things I love on a regular basis. Its cut and dry when you get cancer what matters the most.

Today I was thinking about those I have met with cancer and the things they got through with family.Most are parents and most really have a rough road right now.

I remember what it was like to be told *You have cancer* . All I could think is my Kids at the time, who were 11, 13 and 15, My thought was my kids need a Mom. So there was a lot to fight for. They are older and I swear now that the teens were easier then it is right now. So for anyone out there reading this,there is a army of people who understand and know how it is.

Being a parent is tough work. No book on it. But being a parent with cancer is far more then I would of ever imagined it to be. Its hard in the aspect of now my kids are old enough to understand. The get the whole picture now. Before even if we were honest for the age that they were. Now its all to clear to them as adults whats really happening. Its sure not easy by any stretch.

So if it helps anyone out there, struggling to manage a family and this dam disease to. I totally get it and understand. Life happens even with cancer in it..Do the best we can for the day and move forward one day at time.

Life 105

2008-06-10T10:18:00.000-07:00

Today is a do nothing kinda day. It feels good. No one home but me. So I am soaking up the silence. Trying to feel better.

I had to laugh I called my Mom today..and as usual she is in a mood. No matter how I feel she always has something to say thats worse then I do. I always know whats coming out of her mouth next...She always tells me things will be okay and I can do it!! What can I say?

I always want to take my Dad aside and say something. But thats useless. His remark would be *Don't argue with your Mother!*

So yup I am doomed in that department LOL

Then I realized this morning after doing something. Oh my gosh, I am turning in to my MOM! Not so bad really. In some ways.

Anyways they are good people. However cancer isn't something to talk to them about or my concerns pertaining to it. I think its the older age they are. Its to overwhelming maybe. I think they handled my grandparents, aunts and uncles cancer differently then mine as their child and rightly so it wouldn't be easy. So its just hard to discuss the problems that come to me due to my health cancer included. Though stable long term things come about and thats hard to handle at times minus the support in that area.

Life104

2008-06-09T20:24:00.000-07:00

Today was a pretty slow and quiet day. Something I really needed. We needed it actually.

I am getting some sort of bug. I am not sure if this is a sinus infection or just what.
So I am calling my primary care first thing in the morning, on it. Due to all the head and neck surgery on the left side of my face. Normally there are areas I can't feel and today its sore under my eye and above it. I have a nasty headache to. So makes me think sinus infection.

So today I decided to kick back and relax after a really hectic weekend with the Kids and Grandbaby.

So I plan on Benadryl and Tyelenol in a bit to sleep.As well as hopefully knock the heck out of the headache for a few hours. I do not want to take a vicodin if this works. I just do not like how they make me feel.

I always wonder about the what ifs of cancer. Thats the tough thing after in being in the face and the back of the head. Any time I wake up feeling like I did today. Its a big *What if??*

I don't care how far out you get that always comes up and kicks you silly.

I am off to get some rest.

Life 103

2008-06-09T12:19:00.000-07:00

June 8 of 1998 marked my first partial remission so that is some time ago. Who knew!
Although my cancer came back twice after that in 2000 and 2001. It was a struggle. Not so much all the physical stuff, emotionally it was exhausting. Its hard you struggle with so many things, pain, sickness,dependence on those around you for help,fear and sometimes people talk about the humiliation as well.
There are some pretty low times..Faith is one thing that brought me though the fear, there is no doubt about that.
There are so many times there are mixed emotions. Then one thing might happen and thats it, I am okay breathing a prayer of thanks.

* He brought you to it. He will bring you through it.*

Life 102

2008-06-09T08:38:00.000-07:00

Today its sweltering here in Michigan and so far calm. After yesterday..hope it stays that way.

I have ran in to many blogs on the web about cancer..One thing good about them is they help those who might be looking to just adjust their lives and move forward. You learn thing can better and that may you can handle things so differently the you do. You also then might apply that and adjust to how your dealing with things.

One thing about cancer is you are not the same after it. Your perspective is different and your way stronger as a result. Its not always easy getting there..to the other side. By no means would I take that lightly...cancer is tough and scary for everyone.

Some refer to it as a roller coaster ride they are right. There many twists, turns,highs and lows. Its an experince we never think we will have so when we do its amazing just how it is for each of us.

Last week I met a man, who had no family, no faith and I can't imagine doing cancer alone. It has to be hell.

One thing I have learned is in the process you heal,learn to adapt and grow through your experience.

Life 101

2008-06-09T08:05:00.000-07:00

This a picture of my Husband and I about a week before my first surgery I would be told I had cancer. I was 42 at the time. I don't consider that old. However in some forums I don't fit they are under 40. And as for those over 60 I don't fit that mold either.

My Husband became my caregiver. And he would go through an experience all his own. Different from mine as the patient.

My Kids were 11, 13 and 15 so were were embarking on the teens and I really think that kept us all in the land of living.

In seaching the web I realize each age group has things to deal with. Kids with cancer, teens, young adults. You have young parents out there dealing with cancers of their owns and very young kids. Parents my age dealing with teen issues and or college ages things, and weddings, new grandkids.

My Kids are all now in their twenties and thats a trip to. So we are embarking on new things from when we started our cancer journey. But new is good :)

I name this site the Family Room, when a parent has cancer or someone in your family it affects the whole family. So I hope come here and following my journey helps a few people.