38 replies to this topic

[MJL]

And a new journey begins.

I have been thinking about all of you a lot lately, as I begin another Cancer journey.  I feel this site is a safe place for me to chat and share my fears and concerns, I do not want my information to be "all over the web" so to speak.  Early in June I was diagosed with "small cell lung cancer" It is not curable, or operable but I do have a 60% chance of going into remission. I have chosen to fight this cancer. About a year ago my Husband of 42 years passed away and I do not feel my children deserve to lose another parent so soon. He was my rock and my best friend, it has been a difficult year. So even a few more years will be better than my leaving this world too soon.  I am 63 years old, was diagnosed with CML in June 2009 and fortunately was in complete response. I am praying I stay that way.  The Hemotologists and Oncologists admit there  have not been a whole lot of people in the same situation I am in. I told them to write a paper about me and maybe become famous.  I am having Chemo and Radiation and still on my Gleevec. Also I take a drug called Leukine to boost my white cells when they tank after Chemo. That is a daily shot for up to 10 days. It causes severe bone pain but I have meds for that too.  My Iron and red blood count are low too. I have had Red blood transfusions and Iron transfusions. No one can find where I am bleeding from. I have had a myriad of tests. This kind of lung cancer is a very aggressive fast spreader. It tends to spread to the brain, the liver, the bones and the stomach. All my tests showed it has not. I feel lucky about that. But when treatment is over they will radiate my brain anyway as a precaution just in case any rogue cells fly loose. Apparantly Chemo can not enter the brain so radiation will be the treatment. Please do not ask if I am a smoker, it is a sensitive subject for me right now. When my hubby died of a sudden heart attack I actually had someone ask me if he smoked (during his memorial service) I was appalled! If I had said yes would they have said "oh well, his fault" If I had said No would they have said "oh what a shame"!? One day I will tell you all.

Thanks for listening.

MJL.

[ChrisC]

Dear MJL,

I'm sitting here, listening, holding your hand. Oh my. Carry on.

ChrisC

[Cathy]

I am so sorry you have had the year you have and now this new unpleasant journey. We are all here for you to talk to and share when you want to. Sometimes I wonder how people get through things like this but I guess it is one day at a time. Bless you and please talk to us when you are up to it. It's just not fair!

Best of luck and strength to work through this!

Cathy 

[CMLSurvivor]

You have incredible strength, which I admire. Strength and Prayer will carry a very long way. You are in my prayers. I have had CML for 4 years and could not imagine having to handle anything else big on my plate. I would be a complete basket case. This is a very good place to vent and ask questions about what concerns you have. The people on this site seem to very knowledgeable and non judgemental. Good Luck!!!

[hannibellemo]

Oh, my dear MJL,

I am so sorry that you find yourself on this path; but I'm glad that you have a support group already set up to walk with you! Like it or not you will always be one of us.

Pat

[Susan61]

Hi:  I am so glad you came on to share what you are going through.  Let it all out, and what better place than on here where everyone is like family.

Yes, you do have too much on your plate right now, but now that you have shared all of this with us we can all pray for you to acheve that remission.

I have a great Faith In God, and I believe with all my heart that he has gotten me through what is almost 13 years now of Living With CML

Its hard sometimes to just give it to God, and say I cannot handle this anymore and I need you. 

    I still believe in miracles.  I hope you do too.  I truly believe that God is the Greatest Physician we could have, and he can heal anything if he chooses to do so.  Please keep in touch and just talk or vent or whatever you feel like doing.  If you feel like you need a one on one to talk, please send me a e-mail.  I get back to everyone.

Susan 61

[grannyd]

I am so sorry to hear of the journey you have been on, and continue with more than your share. Please know how many of us are praying for you. May the Lord wrap is loving arms around you & give you strenght. I also believe in miracles. Keep in touch as everyone here has said---we all care about you. granny d

[jrsboo]

Dear MJL,

I am so sorry that this is happening to you.  And I am so sorry that people can be heartless and can say such hurtful things.  My sister-in-law, whom I adore, has also just been diagnosed with small cell lung cancer.  Hers has metastized unfortunately and it has spread everywhere.  She began her brain radiation this week, chemo to follow. 

They are learning so much about SMLC every single day. I found over 80 different trials going on when she told us about her diagnosis.  I know it sounds trite, but where there is hope, there is life. 

Sending you warm hugs and comforting rays of light.

Caroline

[Happycat]

Wow, MJL, how rotten!  I'm so sorry to hear this.  Whether you choose to fight or not, we'll be right behind you.  Try to keep us updated when you can.  I'll be praying for you.

(((Hugs)))

Traci

[TroyLynn]

I am sorry about your news, MJL, and wish I had something more profound to say.  You will be in my thoughts and prayers.

[CallMeLucky]

Thank you for confiding in us this very personal and difficult journey you are on.  I do not understand why things like this happen, and probably never will.  I know there isn't much I can do but I am here to listen as I know everyone else is.  Best of luck, I truly admire your strength and resolve and am hopeful you will persevere.

Warmest wishes....

[simone4]

MJL, I am so sad to hear of your new cancer as well the loss of

your husband. You sound so strong and I know you will get

through this. My thoughts are with you and will be each and

every day.  Let us help you through this. O.K.?

Take care.

Simone

[BethG]

Oh MJL,

I am so sad to hear your latest news. You will be in my thoughts and prayers as you mount your latest battle! This board is a safe place and you do have friends here who understand the fears you are dealing with and the strength you need to rally for yourself as face treatment. You are an amazing warrior!

The biggest hug I can muster is headed your way!

BethG

[nathaliece]

MJL,

I am so sorry to read your post and hear what you have and are going through.  Please know that I will keep you and your family in my prayers.  I hope being about to share your journey and having the opportunity to vent gives you some comfort.  Sending hugs your way.

Nat

[Susan61]

Hi:  I do not know if you have felt like getting back on the computer to read some of your replys, but I did try to send you a personal message of encouragement.  I am praying for you.  Your mailbox is full, and cannot receive any personal messages on here.  Please get on to talk and let us listen.  I know it helps me when I am going through a rough time to have somebody to keep me positive to get through whatever it is.

Please keep us updated on your progress with your treatments if you feel up to it.

Susan 61

[MJL]

It has been a rough week. The nausea has finally reared it's ugly head and progressed. Sunday I could not keep anything down during the morning hours. I spent most of the day sleeping and trying not to move. I had my second series of Chemo last week. I get the Chemo every third week for three days. Day one it's about 3 1/2 hours. Day 2 and 3 about 2 1/2 hours. I do not get Radiation on those days. The Chemo has medicine to help me with nausea, including steroids. For those 3 days and the day after I "fly high" on those steroids. They give me energy and I dash around like a maniac. (well, for me it is a lot energy compared to my usual daily routine) I get lots of things done. I feel like I am accomplishing something. Problem is I do not sleep very well. No naps and at night I am awake until very late. I know by day 5 I will crash, and I do.  Chemo starts  Day 1. Day 8 through 12 are the days when my white count can crash so I have to be very careful about infection and contamination. Today is day 9. Lots of hand washing, cleaning and staying away from crowds. Also taking my temperature every day. I am not supposed to let it get over 100.5 without a call to my Doctor. Last night it got to 100.3. I resolved to stay calm and just go to bed. I did take it more than once to be sure it did not go too high .My last hospital stay several weeks ago was after Chemo and because I was Neutropenic, they had me on a Neutropenic diet (everything cooked)  Everyone entering my room had to wear a mask and scrub. I had I.V. antibiotics, my temp had reached 101.9. Fortunately it only lasted a few days and my white count climbed back up  and I was allowed to go home.  I am hoping I do not repeat this pattern again this week. I will be vigilant about food handling, hand washing and surface cleaning. My sister who is here taking care of me runs around daily with either clorox or Lysol wipes cleaning  anything that might have been touched. Door knobs, light switches, counters and the bathrooms. Our poor hands are starting to look a little haggard too, Oh well!  I am getting Radiation each day this week so It's just go there and come straight home. The waiting room is never crowded, usually just one person ahead of you, they are so efficient on thier timing of patients. When I come out "voila" another person has shown up.  Radiation does not take long at all. Once it is set up it is really just about 5 minutes for the treatment. Once a week they take x rays to make sure my markings coincide with the machine. We lose and gain pounds and it can make a difference on the set up. Last week thay had to adjust me 1/2 a centimeter. Can you believe any thing is so precise???? Amazing!  Once a week I meet with the radiation Oncologist. He is the kindest most caring Doctor I have ever met. He is there every day just in case he is needed.

Thanks everybody for all your wonderful wishes and prayers, they really do mean a lot to me. Must get some food in my tummy so I can take the good old Gleevec.

Your friend,

MJL.

[lala]

YOU ARE AMAZING!  You sound very strong.  During my most difficult times, I feel like God helps me do whatever I need to do.....and later, I look back and wonder how I did it!  That is the feeling I get when I read your posting.  Keep going.....and best wishes....we are all rooting for you!  Lala

[Tedsey]

Dear MJL,

I am so sad to hear about the further trials in your life.  As if CML wasn't bad enough to deal with.  I hope that no one has asked you if you smoked.  How insensitive.  It really disheartens me that our culture is so quick to "blame the victim".  From what I know, most people diagnosed with lung cancer have never smoked.  And even if they did, no one deserves to suffer.  I wish you strength, a full recovery, and no discomfort.  Best wishes and positive thoughts to you from me.

Here for you too,

Tedsey    

[nathaliece]

MJL --

Thanks for letting us know how you are doing.  I continue to pray that this journey goes smoothly for you and a ends in a quick, complete recovery.  I agree with the others.  You are amazing.

Nat