I have Missed you all

[Carleen]

It has been so hard being away from the board for so long. I hate not having the computer access I used to because I've come to depend on the people here for support, and I have also come to love everyone here and while I am off, I fret and worry about so many of my LC family.

I have missed so much and feel like I can never catch up with all the posts, so for anyone out there that I've missed, just know that I care, and and praying for everyone every day.

It is overwhelming coming on, and hearing so much bad news in one sitting. It is hard to lose friends to this disease, but to come here and read a number of posts in the grieving section from so many truly wonderful and beautiful people is so hard to bear. I was tempted to skip the forums I knew contained the sad news, and read only the good news section, but I know that although people need someone to celebrate with, those mourning loss need our support even more.

Well, for those interested in knowing what Keith and I have been up to...

Life has been more than hectic. New Job, Home Building stresses, needing to move out of where we are, Keith's job trials and stresses and cancer. But these things seem meaningless when compared to the blessings we share together.

My new job is going ok, but I am just not developing a level of comfort with it. I've never done sales before, and now I am a sales person for phone service. I guess I am doing ok with it. I am performing as well as management expects, but I don't really enjoy it. I find that I just want to stay in bed in the morning and don't feel like going in to work. But, it does have the one thing I need. I make my own hours (more or less) so I am always available for all of Keith's doctor's appts.

Keith is doing relatively well. He started radiation on the mass in his mediastanum last Thursday 4/15. He will have radiation every day M-F until June 15. After that they plan on doing two rounds of Chemo. He has been very tired lately and sleeps more than he ever has. He is still working full time, but now he usually comes home from work at 3 and naps until 6-7:00, he eats and is awake for about an hour and then sleeps for the rest of the night. This started before he started the radiation. He still has the numbness and pain in his right arm and we haven't had any determination of what it is. Keith went for an MRI about 3 weeks ago, and they scheduled him wrong and didn't have the right machine available. They tried to cram him into a machine meant to scan single appendages, so they stuffed him in with his one arm twisted behind his back and the other wrapped around his head. He was so uncomfortable and in pain he had to call it off. He went back a week and a half ago and had an MRI, but they called him the next day and said the films did not turn out so he has to do it again. So, he had another scan today, and we wait for the results. We have been waiting to find out why his arm is numb and in pain since the end of Jan.

Now, Keith has also developed a few other pains and problems. He is having some pain in his abdomen now. It is a mild cramp/pain most of the time, but he says when he has to urinate it is pretty painful. It is not when he pees that it hurts, but in the initial "push" or starting to urinate that it hurts. He also apparantly has difficulty starting to urinate. We are both interested from hearing from anyone who might have experienced something similar, and hear what may be the cause of this. I am hoping and praying it is a common side effect from some pain killer or other med. He is still experiencing profuse sweating along with chills without exerting himself, and a general feeling of blah or ickiness.

Other than these things, Keith is doing really well. He is staying positive and we are sharing so many wonderful moments. We have had a trend for the past 3 months where we spend every Sunday devoted to togetherness. We call them Keith and Carleen Sundays, we go to church, then out to lunch and just drive around town or shop or we do nothing. The important thing is that we are together the whole day, and it is all about being close. It is the high point of my whole week.

We talk about our plans for the future, with an air of certainty that we have a future and it is going to be together. Some people think we are in denial, but if so, well so be it. I have not the strength to think any other way. I could not bear to consider the alternative, it would destroy me.

We feel so much love and gratetude for every day and every gift that we feel fortunate in life. We have been blessed and God has given us more than our fair share of joy. How many people get to feel a love so deep it invades every fiber and molecule of their beings? How many people marry their soulmate, best friend, support, confidant, and sex symbol? How many people have the love and support of 1000 people who truly care during their darkest hours and the hardest trials of their lives?

For all these reasons we are blessed. I only wish I could be here more to share and return some of the gifts given to me. But please know you are always with me, always on my mind.

I am always with you in love and friendship, in God's mercy and Grace

Carleen

[ginnyde]

Dear Carleen,

You know we all miss you when you are not here. I am sorry you are not crazy about your job. It is very difficult to spend all that precious time at a job that you are not passionate about (or in like with)

Can't believe how they have messed up on getting a good MRI on Keith's arm. Just shoddy medicine. I would be yelling to the rooftops.

But am glad to hear that Keith is in treatment and pray for excellent results.

You may be in denial, but we are too. We talk about the future, it is more now a 'somewhere in the future' thing than let's set a date for that trip. But when hope is lost, I think all is lost.

You keep dreaming and hoping. It will give you and Keith happiness.

Ginny

[Guest KellyB]

Carleen,

It is good to see you back, You and Keith are so lucky to have one another, I hope things go well with the current treatment. I have been fortunate enought to have my soulmate and I pity those who do not have the greatest of gifts in finding the love of your life. You are two that have become one and that strength will guide you through this ordeal.

I am sure it is very very difficult for you, but isn't it amazing how God hands us a situation and we persevere? Your bond and love has given you the ammo to battle and it will get you through.

Cherish and appreciate one another everyday, that in itself is a gift. Not many live their lives everyday appreciating the loved ones around them.

Please keep us posted...Prayers are always going your way.

Kelly

[Ry]

Thanks for checking in with us Carleen. We miss you when you're gone so long.

[Angie Daughter of Bill]

Good to see you here. I have thought of you and Keith often and wondered how things are going. I hope and prey that the radiation and chemo works for Keith.

I know how special those Sundays are to you and Keith. Sunday is also mine and my hubby's day to "reconnect" with each other. Much like your day, we go to church, out for lunch and then just spend the day doing something together. (Usually fishing in our pond or riding around our pasture to check on our cows) Being outdoors is so peaceful to me right now. It gets my mind off Dad's illness. (a little)

Treasure each and every moment together. In sickness or in health, we should all cherish every moment with our spouses. My hubby keeps me going...............so do my two beautiful girls! Praying for you! Thanks for checking in and giving us an update.

Angie

[Lisa O]

Dear Carleen,

We have certainly missed you. It sounds like you have certainly filled your time. I do not have the answers to what is going on with Keith's newer issues. It seems we are all so different.

Those personal time sundays sound like such a wonderful respite from the rest of the world. How wonderful for the two of you to celebrate your love every week.

I think of you both and include you in my prayers often.

[Lea]

Carleen,

I am fairly new so thank you for sharing. My husband and I are both working full time and it is difficult. I am fortunate in that my husband can work from home and I have been at the same company for almost twenty years so I have tremendous support. I too, have married my soulmate, and we are about to celebrate twenty years. We continue to laugh and have fun, and I like you, appreciate each day. The two of you are in my prayers and hope that your next post will be in the Good News Forum.

[AnneBurris]

Carleen,

I think of you and Keith often and am always glad to see your posts. You and Keith have a special love. It's great that you guys are making plans for the future, after all life has not stopped, and making plans gives you hope for the future and goals to strive for. I wish you all the best.

Take care,

Anne

[Jerrye]

Carleeb,

I too have had excruciating pain in my left shoulder blade radiating done my arm for at least 8 weeks. The dr's have xrayed, bone scanned, CT scanned and PET and see nothing, I am having an MRI next week for a extra check. But so far, the general consensus is that it is stress related. No, REALLY?

I began going to a chiropractor that I have used for years and he is working on the muscles only. I also began acupuncture last week. I have seeing a HUGE inprovement. Before, it hurt all of the time, getting worse in the evening and becoming unbearable at night (or during weather changes, such as thunderstorms).

Yesterday, for the first time, I did not take anything for pain until about 1:00 in the morning when the pain woke me up and that could have been caused by the bad thunderstorm moving through the area.

Long story, but just a thought, acupuncture and or chiropractic care may give some relief.

Also, the acupuncturists suggested working with me on the cancer. I think I'll try it. Most changes she suggested were diet (juicing raw vegetables, and eating 80% veg/fruit and 20% protein) and finding the CHI that is congested. Don't know if I believe the CHI thing, but I'll try it since sticking a bunch of painless needles in my body for 30-40 minutes could be worth the outcome.

You and your husband are in my prayers....

Jerrye

[TBone]

Hi Carleen,

I am so glad to see you and Keith back on here.I look forward to your encouraging posts.I just tried to post a reply that I spent 10 minutes typing and it disappeared in mid cyberspace.You may get it too.I have no idea what happended to it.The urinary symptoms that Keith is having sound exactly like those of a kidney infection that I had years ago.It was quickly fixed with antibiotic.I wish it could be something that simple for him.Might be worth checking.Radiation sure tears me up worse than others on here.There is no way I could work while I was getting it.I was only awake while on the way to be zapped or on the way home.It really drained me bad.I lost 30 lbs.I hope Keith doesn't have that happen to him.Praying for us all.TBone

[Don Wood]

Oh, Carleen, it is so good to see you posting again. I was thrilled when I saw you posting in response to others' posts today. Thanks for the nice update on you two. I am so happy you are taking K&C Sundays for yourselves -- wise move.

Painful urination can be due to infection or obstruction of the bladder (enlarged prostate, scar tissue, etc.). He should have that looked into.

Blessings upon you two! Don

[Tiny]

Carleen-

It was delightful, delightful to get an update on the two of you and to read your reaffirmation of your love for one another. The prayers are always there for all of us. Blessings...

[mayos]

I love your posts Carleen.....they always make me feel like I'm right there alongside you and Keith. Your flair for writing is a gift. I'm hoping for the best...that Keith responds to this new radiation treatment quickly. You both deserve to have years upon years of loving and of sharing with each other. This disease lies and steals.....I'm so sorry your lives are being spent fighting it.

[mhutch1366]

Carleen,

It was so good to hear from you, as always.

You and Keith renew my faith in love.

Take care and God bless you both,

XOXOX

MaryAnn

[Snowflake]

Carleen,

Do not dwell on what the future may hold and let the storm clouds color your life together. Here's a bit of black humor that is TOTALLY unappropriate on this forum (so anyone who gets offended can slide on down to the next reply, okay?)

My spouse is a tad bit older than me and we are still in the "glow" of newlywed-dom. With the diagnosis, his worry was that I would go before him (my big argument with myself on marrying him was that he was older than me and odds were I'd be alone, again, in the future)... So, when he opened up about HIS feelings with not being able to live if I weren't here to kick his *ss daily, I shared with him what my thoughts had been and WHY I married him anyway... And then, I told him that odds were we wouldn't die "together" unless we started doing more things that were "risky" together. Well, since neither one of us are into extreme sports, the risky behavior will have to be travel and touring beer countries to tempt all those random beer trucks out there...

...and if anyone is wondering, I married the man 'cuz he's the first person I've met in a long time that can make ME laugh - and I can make him spout coffee out his nose. He's also the first guy I've EVER met that seems to enjoy my company AND can put up with me. THAT takes guts (or stupidity, not sure which...LOL).

Take care, Carleen. Life has thrown a wicked curve ball into your life, but you could STILL hit it out of the park...

xxoo,

Becky

[Connie B]

HI Carleen and Keith,

SO GOOD to see you back on the board!!! I sure hope that good news comes from all these botched tests poor Keith has had to go through. A good friend of mine had an MRI last week also, and it TOO didn't work, so she has to do a redo tomorrow. BUMMER! I sure hope you don't get charged for the BOTCHED ONE!

You really are right about being BLESSED! I agree with you that we really are BLESSED to have all the wonderful things and people in our lives. I'm only sorry it took a devestating disease to bring it to the surface. But, the monster is beatable and I'm still opting for a CLEAN and CLEAR MRI and CANCER FREE day for Keith.

God Bless to you both.

[Carla]

For what it's worth, the night sweats my dad had were what led his oncologist to culture the blood, but although it didn't turn out to be a blood infection, there apparently was some infection in there from the bad gall bladder that was about to burst -- all totally unrelated to his cancer but all mixed up with the symptoms of side effects, etc.

It's really amazing they ever figure anything out.

I know when they first said Gall Bladder, I almost laughed -- it seemed like such a mundane thing compared to all the other stuff, although at that point it was pretty potentially lethal if it hadn't been caught in time.

[Snowflake]

My gall bladder has been removed since diagnosis of LC - just in time for Christmas! (Got out of having to plan a huge family meal, just made reservations...)

From what I've heard, the ol' gall bladder can make life a real hell when it goes down hard (mine wasn't working, not causing any pain per se, but not working - the doc wanted to take it out as precaution in case the future holds chemo for me - THAT would be when the "bad stuff" would happen and he wouldn't be able to get it out then...)

Hmm...maybe LC is tied to a malfunctioning gall bladder....

[Hebbie]

Carleen,

I know you have not been on the boards much lately, but a conversation I had with my mother's neighbor last night made me think of you and Keith. She (the neighbor) had been diagnosed w/ a "carcinoid" last year, that they didn't think was cancerous. They couldn't operate because it was wrapped around her heart. She went through radiation and they thought that would be the end of it. She has had a severe cough and what seemed to be acid reflux ever since and she went to 11 different doctors before getting the final diagnoses: It is, in fact, cancer in the form of an "Aytipical Carcinoid". The radiation apparently did not work on it.

What they have prescribed for her is Sandostatin shots, I believe she said she started taking them 4 times a day (had to give herself the shots twice a day), I'm not real clear on the details. What I do recall her saying is that they told her this is a very slow moving cancer (and also very rare -- only 5% of all LC are this type). They also said it doesn't attack the ORGANS in the body, it attacks the CELLS of the organs. She said instead of attacking the liver, it would attack the cells of the liver. The oncologist basically told her that this is such a slow moving cancer that she would die of old age before it would have a chance to kill her.

The only treatment she is receiving is the Sandostatin shot -- no chemo.

Sorry for this long winded post, but I believe Aytipical Carcinoid was Keith's diagnoses? Does any of this sound accurate to you?

Thank you so much for any feedback and I hope Keith's treatment is going well. I think of you both often!

Many prayers,

Heather

[cathy]

Just wanted to jump in and say hi Carleen and Keith, its good to hear from you..

[Andrea]

I was so excited to see a post from Carleen and see that beautiful face, then realized it was an older post Carleen---how are you? how is keith? PLEASE write us!!!!!!

[Hebbie]

Sorry guys, I ressurected Carleen's old post because I had a question about Keith's treatment....but since everyone is excited thinking it's new, now I feel bad

[Andrea]

Don't feel bad Heather, we are always excited just to see her picture, new or old!! :)

Enjoy cruising life!

[Cindy RN]

WOW! So glad to see you on here. Missed you!!

DENIAL--well if that is what they call it then I am in denial too. I believe it is faith I have. People in denial think they are going to live forever-or at least to retirement. Guess what that ain't always true.

I have faith I will be here with my family until God decides for me to come home. Those who call it denial are in denial about being in faith etc etc. Oh man-I don't even make sense to ME! Guess it is past my bedtime. Good Nite!

Love Cindy