The Leukemia & Lymphoma Society - Fighting Blood Cancers

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48 Replies Last post: Dec 11, 2009 5:29 PM by rmd123   Go to original post 1 2 3 4 Previous Next
kgirl   240 posts since
Aug 16, 2009
Currently Being Moderated
15. Nov 16, 2009 5:16 PM in response to: Honey
Re: Partially diagnosed

Well hell Honey, you and I fell off the same cart, different sides when it comes to a loved one with drug and/or alcohol abuse.  The abuser in my life is my daughters husband,

whom I care for not at all.  Very long story short, he is an alcoholic with a drug problem and if I could jettison him from my life I would in a heartbeat.  I have a four year

old granddaughter which complicates the situation.  Nuff said on that topic. Hmmmm, four years vs. two months, rather unbalanced scale, but it will balance out in time

and like you so aptly put it, you need to take care of you first.  I've been through all the usual, diagnosis, bloodwork, bone marrow biopsy, PET and CT scans, Port placement

and six sessions of R-chop chemotherapy Prednisone Therapy and Nulasta.  My last chemo session was June 30th of this year, and since then I have continued to improve and

pray that this continues.  Cancer is a virtual roller coaster, and you willfind your emotions all over the place. All you can do is the best you can do and if/when yu feel a blue

period coming on, do something, anything, to get your mind in another gear.  Joe had a great idea of getting outside, even if it's for a short period of time.  Get out in the

sunshine, feel the warmth on your face, smile at a stranger even if you don't feel like it.  Try really hard not to be a hermit, because left alone to our own private hell is

another type of hell all unto itself.  From what I understand, most Lymphomas progress slowly (I'm not a doctor, just my understanding).  Ask your doctor at the clinic you

attend if he knows of anyone who can help given your circumstances.  Have you checked into Medicaid (not sure if that is the right agency or spelling, just know that there

is medical help available for those who find themselves "inbetween" as you now unfortunately do.  I'm trying to read between the lines here, no judgement whatsoever,

but are you saying the surgeon who did the biopsy is not your doctor and your doctor at the clinic doesn't know you are uninsured?  Bit confused here, sorry.

You did have prior health insurance through your previous employer??  Don't mean to be nosy, but if you have been unemployed for a short period of time, would your

previous employer consider trying to help you get COBRA??  It would have to be a continuation, so maybe I'm really reaching here.  At this point, maybe when you see

your doctor on Wednesday you could have a frank and open converastion with him/her about your situation and see what transpires.  As for questions, you bet, ask

as many as needed to arm yourself with as much information as possible.

This text is once again refusing to wrap, so excuse the uneven breaks.  Humor is great!!!  Use it liberally. 

Your friend,

Kgirl

Wobbles   308 posts since
Apr 3, 2009
Currently Being Moderated
16. Nov 17, 2009 12:38 PM in response to: Honey
Re: Partially diagnosed

Honey, yes!  I do see the humor in your post.  And I like it.  I’ve always enjoyed humor and try to use it all the time.  It is a kind of barometer of my emotional state.  Some days I am all high pressure with lots of good jokes and other days my pressure is low and I whirl in a fog.

I can certainly see the difficulty of your situation.  However, I also see that you’ve got a good handle on what needs improving. I think you are going to do the right things for yourself and slowly, step by step, your life will get better.

 

Now that you have a first connect person, why not try to find out if there are support groups in your area.  They may hold meetings where they can see each other face-to-face.  Cyber support networks are good, but they cannot replace the spontaneity, warmth and aliveness of direct contact.

I hope your walk was enjoyable.

Joe



kgirl   240 posts since
Aug 16, 2009
Currently Being Moderated
17. Nov 18, 2009 7:00 PM in response to: wtarlow
Re: Partially diagnosed

Honey, where did you go???  How did your doctor's appointment go???

Kgirl

Honey   15 posts since
Nov 12, 2009
Currently Being Moderated
18. Nov 19, 2009 10:41 AM in response to: Wobbles
Re: Partially diagnosed

Good Morning Joe,

I try daily to get the humor to the surface.  Some days are better than others.  I contacted the LLS in my area.  Apparently there is no support group in my are at this time as the person that gives the sessions is currently out on leave.  I am very grateful for my Peer to Peer contact.  It will have to do for now. 

I've never been an overtly religous person in my life however very spiritual.  My peer to peer contact told me of a church in my area.  Myself and my daughters family are planning on attending this Saturday.  On Sundays my eldest grandchild has his Basketball games.  Hopefully Sundays will work as the schedule changes.

I'm trying one step at a time right now.  I've been a control freak all of my life and I'm learning that some things are just out of my control.  Cancer being one of them. 

Honey

Honey   15 posts since
Nov 12, 2009
Currently Being Moderated
19. Nov 19, 2009 11:11 AM in response to: kgirl
Re: Partially diagnosed

Good Morning Kgirl~

Cobra is out of the question at this time.  I've been out of work since last November. At the time when I was laid off, I was in great health (so I thought) Rarely ever sick and a very active woman. I really thought I would be back to work in a month or two. That didn't happen.

The lines at job fairs are crazy here, as well as the people applying for posted job openings.  I've never seen it like this. I've was in the same business for over 15 years.  Had I bet the farm that this would be something tat I would be facing, I would have LOST everything.

I did go to the Dr. yesterday.  I did get some information however, I was given 2 prescriptions for my depression and anxiety and have to take my daughter with me on Monday to the "All inclusive" information meeting.  The concern of the Dr was that I may not take everything in and, they want her there to make sure that everything is heard.  I see their point, as my mental state in the past month has been up and down on this emotional rollercoaster.

As for my Ex, I mourn him daily as I feel he left me when I needed him the most.  Through this, I've realized that I can only depend on me.  Even though you don't stop loving someone over night. 

While at the Dr yesterday, I was in a counseling session for almost 2 hours.  I let it all go in there.  I was more open about me and this cancer than I've been my whole life about anything.  I cried so much that my eyes are still a bit swollen today.  Funny thing is I had thought I could be Stoic. I started driving on the freeway, so did the tears.  I was given a journal years ago and found it yesterday.  I've decided to start writing in it daily.  I want to chronicle all that I'm going through right now.  In the DR, yesterday it was decided that we would work together and take it one step at a time.  Starting with the prescriptions. This is why the meeting was rescheduled and they are also trying to get me an appt with an Onocologist/Hematologist, that will work with me throughout the "treatment".  I feel good about that.  I was also told that I would not be handling all of this alone.  The clinic and staff want to help me. I am sooooooooooo very Grateful & humble right now.

I don't feel as though you are judging me. I am grateful for your support and kind words.  It feels good to have dialogue with someone whos going through a similar situation.  I realize that there are people out there ready to judge anyone for anything.  I don't fear that.  I know that people will talk.  That is one thing that we as HUMAN BEINGS can bet on.

Thank you for listening (reading) and your genuine kindness.  I do/will appreciate it.

Much Aloha,

Honey

kgirl   240 posts since
Aug 16, 2009
Currently Being Moderated
20. Nov 19, 2009 2:06 PM in response to: Honey
Re: Partially diagnosed

Honey, sounds like you made some giant steps forward yesterday.  Bravo!!  Isn't it an odd thing, when we do all the "right" things, yearly exams, mammogram, etc., only to be hit upside

the head with cancer.  Jobs are crazy everywhere, but California is one of the hardest hit states, ergo the extended unemployment.  A journal is a good thing, I also have one

as do many folks on these boards...sort of a catharsis.  Cancer is a life altering experience to put it mildly, and because we are such emotional yo-yos, it helps to go back and see

how we were feeling the previous week or month.  It sounds to me like your doctor has something to share with you and wants you to have emotional support as well as someone

to take notes (don't forget a notepad because it's easy to miss pertinent info when confronted with facts we may not want to hear).  Again, one foot in front of the other and one bridge

at a time.  It is truly wonderful to hear you have a doctor and clinic willing and able to work with you in your current situation.  Until you know what your treatment options will be

(if you need treatment) it's probably best to put your job seeking on hold for the moment, yes??  It would be difficult to begin a new job and deal with whatever comes down the

pipeline concerning your diagnosis..  Please be sure to update Monday so we will know what's going on with you and your diagnosis.  We'll walk you through as much as we

possibly can.  By the way, it was really good to hear you had a counseling session....can certainly help lift some of the burden.  Do something nice for yourself today!!

Faith, trust and fairy dust.

Kgirl

sha_shelt   634 posts since
Apr 3, 2009
Currently Being Moderated
21. Nov 19, 2009 3:18 PM in response to: wtarlow
Re: Partially diagnosed

Ohmygosh!  How could I be so late?  I'm usually right on the spot responding to those cries of dispair from one waiting for diagnosis or receiving initial diagnosis or pretty much any other time!  Guess I was just too wrapped up in my own little world the last several days (or that traffic was realllllllllly terrible on the freeway!).  Soooooo....

Hi all and Honey, welcome to the boards!!  I'm Sharon and usually known as the "coffee lady with the big ol country kitchen table" so kick off your shoes, pull up a chair, set a spell and have a cup of coffee and a chat!  The kitchen is open 24/7/365 and the coffee is always hot and fresh so make yourself to home.

I'm so sorry you've been wonked over the head with all you've been through the last several months.  One thing to remember is to breathe......  breathe..... and breathe deeper..... let it alllllllllllllllllllllll the way out.....  repeat as often as necessary.  There's no calories, fat, sugar, or cholesterol in breathing so it's not only a relaxer, it's downright healthy!

Fear of the unknown - damn I hate that feeling and I remember it well when I began this journey in 2001.  "Non-hodgkins lymphoma?  What the heck is that?  Cancer.  Cancer???  How could I have cancer??? No....you must be mistaken.  Look at that again.  Cancer?  OMG!!!  I'm gonna die...  definitely gonna die!!  What are we gonna do about this?  Who's a good cancer docotor? We have to start treatment right now.  Yes, NOW!  I have CANCER!  We have to do something right G-D now!!!"  and all manner of variations of that theme played out in my addled brain for awhile.  I got the results of the biopsy all by myself from the surgeon's office and on the drive home wondered how the hell I was gonna tell my hubby, son, family, co-workers, and friends.  Especially when I could barely THINK the word and not cry. 

So I had me a really good ol' pity party with all the snottin' and cryin' and blubberin' a person could imagine (but I allowed myself only an hour or so) and when hubs got home, I told him (and cried some more).  And then I made a real boneheaded mistake - I jumped on the internet!  OMG!!  I didn't know enough to know what I didn't know.... and the first couple of websites were very outdated info (didn't notice that) and I read where the average life expectancy for b-cell NHL was a little over 9 months even with chemo - OMG!!!!!!!!   WTF? I asked myself....and then said oh hell no!  That ain't gonna be ME! Clicked off and never looked back!! 

Found a good oncologist who seemed to take FOREVER <eye roll> to get treatment on the road (diagnosed in Nov '01 and began treatment in Mar '02).  But remission was mine in the summer of '02!  Lasted about 3 years....not bad for the 9 months that I originally found, eh?  lol  But since the summer of '05, I've relapsed now a total of 6 times and getting ready for a chemo again in late January.   Bottom line is - I'm still here, still kickin', still sharing my story, offering hope, and trying to talk down from the roof ledge folks who are just beginning this journey.

Is the road always easy - nope!  Are there some scarey, sometimes physically painful times ahead - yep!  Will there be times you're going to wonder why you're putting yourself through all the tests and treatments - absolutely!  But will it be better on the "other side of the storm"?  Oh yesssssssssssssss!   Barb, and me, and a lot of others on here will walk with you every single step of the way if you need us to!  God ain't told me "it's over" yet, so I still have some walking in me.  Most days will be good, others, not so much but remember, the kitchen is always open and filled with other people who've been there; who really "get it" and when you make it through, then YOU will be here to lend a hand to the next one who will be joining the club and so on and so on.

Never give up......never surrender!  You are about to join the ranks of the warriors.  Stay focused, stay determined.  Have faith and believe that whatever you need will be presented to you.  Find things in your life to be grateful for (yes......there are some!) and write them down if you must, add to the list.  You'll be surprised how hard it may be to make that first entry and in just a few days, they will come more and more quickly.  Attitude, honey.....a-t-t-i-t-u-d-e.  Screw that "stay positive" stuff!  It's all in the determination and attitude!

I've rambled enough but you keep on posting - ask questions, let it out, you're among new friends here who do understand.  We're here to laugh, or cry, or rejoice, sympathize, and just let you be who you need to be at the moment.

Hang in there!!  (another cup of coffee??)

Sharon

rmd123   4 posts since
Nov 20, 2009
Currently Being Moderated
22. Nov 20, 2009 2:55 PM in response to: sha_shelt
Re: Partially diagnosed

Honey,

 

I just stumbled across this site while looking for information about lymphoma.  I have not felt well the last few months, and, of course, after looking on line too much, I am afraid that I may have some sort of cancer. But I have not gone to the doctor yet. I am too afraid...I am very phobic of all things medical. But I didn't really come here to whine about my story, cause I know that I need to get in to see a doctor. I just wanted to let you know that your posts have really touched me. I joined today, so that I could post a reply to you! I was laid off a couple of years ago too, and didn't keep the COBRA, too expensive. I was like you, pretty healthy, so I didn't worry too much.

I'm glad that , so far, you have had some help in regards to having the biopsy done.  I hope that there is more financial help for you.

Have they told you what is next?

I know how it feels to want to reach out to people to talk to. It really does help. This seems like a great board, amazing people.

I  noticed that you live in So cal?? me too!! I live in San Bernardino County....Chino to be exact. My hubby grew up in Orange.

So, I hope that you don't think I am some kind of strange-o....... like I said, your posts just stuck in my mind, and wanted to let you know that people do care, and you will be alright!!  I will continue to follow your story.

Rita

Honey   15 posts since
Nov 12, 2009
Currently Being Moderated
23. Nov 20, 2009 10:15 PM in response to: kgirl
Re: Partially diagnosed

Hi Kgirl~&ShaShelt

I have to say....I love this board.  It feels good to have somewhere to discuss everything that I'm going through.  It feels really good.  The idea of sitting in a kitchen at any time even, if just to have coffee & cry is more than I could have asked for.  I have a sweet tooth and make the best brownie cheesecakes. They're small like cupcakes.  I've brought a dozen and their over next to the stove, on the counter.  Please Help yourself! They're still warm.  YUMMMMMMMMMM...

I'm hoping that the medication is working.  I know one is working because not too long after I take it I'm really relaxed and ready to get some sleep.  For the first time in months..I finally got a full nights rest(More than 3 or 4 hours at a given time).  I realize that it will take awhile for my body's sleep bank to get full but, it's a start.

Got a call yesterday evening from the clinic that I go to.  Instead of me going into the clinic on Monday they found an Oncologist/Hemolologist willing to take me on as charity.  They rescheduled my APPTS for the following Monday at the clinic.  I hope he talks to me and is kind .  I have so many questions that need answers.

More news.

My peer to peer contact, May I say is absolutely WONDERFUL, put me in contact with someone from her church.  My family & I plan on attending on Saturday evening.  I'm hoping that this will be a good fit too.  I've wanted that for so long.  I want to be a part of a good church.  I say good, only, because I've had more than 1 church leave a really bad taste in my mouth over the years.  I've become more spiritual than church going because of those times. 

Ladies, I seem to write better in the morning.

I shared this board with my daughter on Wednesday.  When she gets home in the morning from taking my grandsons to school she's noticed that I am on this board.  She asked about it sooooo, I shared it with her.  I also let her know that there is a section in here for "Caregivers" as well.  I want her to be able to ask for help when necessary too.  She is married and has her husband to lean on but, here she can communicate with people that are dealing with a family member's cancer as well.  I need her to be strong and I realize that's alot to ask.  I just want her to be able to release the sometimes negative emotions that run parallel with this ugly monster.

I'll write more later.

Honey

Honey   15 posts since
Nov 12, 2009
Currently Being Moderated
24. Nov 20, 2009 10:42 PM in response to: rmd123
Re: Partially diagnosed

Hi Rita,

I too was scared.  I still am everyday.  I'm certainly not in any position to give advice at this time.  But I will say, seeing a doctor will help.  You'll at least know what your looking at.  You could even be worrying for no reason.  At the least you would have an arrow pointing you in one direction or the other. Should you find yourself needing support, you can certainly find it on this board. 

Thank you!   It feels good to hear that my situation has touched you.

Please feel free to follow my story and please...Chime in at any time.

I really should rest for awhile. 

Have a great weekend~

Honey

kgirl   240 posts since
Aug 16, 2009
Currently Being Moderated
25. Nov 21, 2009 4:56 PM in response to: wtarlow
Re: Partially diagnosed

Hiya Honey.....your brownie cheesecakes are superlicious!!!!  I had two.  Sharon has the best Country Kitchen going and I've been in a few.  I'm so glad your meds are working and you're getting some much needed rest for body and soul.  Yippee....you've found an oncologist to help you through this journey.  I'm thinking he is going to be very kind and will answer all questions asked.  You are full of good news today!!  Your peer to peer contact is working well, you sound a bit more upbeat and you know you will soon have answers.  I think it's terrific you're sharing the boards with  your daughter....two are better than one, yes?????

Stay focused and determined, and have a GREAT weekend.

Your friend

Kgirl

Honey   15 posts since
Nov 12, 2009
Currently Being Moderated
26. Nov 24, 2009 12:31 PM in response to: kgirl
Re: Partially diagnosed

Good Morning!

Did I fail to mention that the brownies are Peanut butter Cheesecake brownies.  Sorry....It slipped my mind.  Please forgive me, for all that could be allergic to peanuts.....

Well,

I went to the DR's yesterday.  It is most definitely B-cell follicular non-Hodgkin lymphoma. I go in the morning for a PET scan.  I then go next week for the bilateral Bone marrow biopsy.  Might I say that I am NOT looking forward to it.  He took the time to answer a couple of my questions but not all.  He said he wants the results prior to answering all of my questions.  He did say that because of my age (45) that he wanted to attack this cancer in the most aggressive way possible. He seemed very "as a matter of factly", about it.  Maybe it because he works with this daily???? In any event, at least we're moving forward. My daughter was in the waiting room and when we left she told me she was talking to a woman in there who's husband has Lymphoma.  He had his bone marrow biopsy right there in his office.  I was shocked.  Is that normal? If so, how come mine is scheduled at the Hospital? Maybe because of my lack of insurance? Thoughts???????

Over the weekend, Sunday evening, I got 2 hours sleep.  Maybe it takes awhile for the depression med's to kick in? Maybe it's a side affect? Whatever the case, by the evening I was physically & emotionally exhausted. Looks like I will be spending alot of my time in the Doctors office, hospital and of course the counseling office.  Let me say this though, "I AM VERY THANKFUL FOR ALL".  I still worry about treatment though.  What kind, the effects, and all that goes with it.  I already feel like MS. Frumpy. Don't get me wrong.  I do take of myself.  I just don't feel like I used to.  I used to look forward to the weekends when I could wear sweats, flip flops and NO Make-up.  Fast forward to today and that's my normal attire.  I don't put on make up because I typically try to nap daily.  I'm not always successful at it.  I just don't like make up on my face while sleeping.  Have any of you gone through this?  Did you feel frumpy? Possibly "Broken"?  I do.  I don't feel like I used to.  I'm not trying to start a "Pity Party".  I'm just wondering if this is normal? Do I sound selfish? Self absorbed?  I hope not. 

It's supposed to be a beautiful day here.  I took my 2 grandsons to school this morning.  Just a small car ride, but, It was outside and not the doctors. I'm also going to clean the patio today.  It will be a good day.

Happy Thanksgiving to all~

Honey

rmd123   4 posts since
Nov 20, 2009
Currently Being Moderated
27. Nov 24, 2009 12:48 PM in response to: Honey
Re: Partially diagnosed

Hi Honey,

 

I'm so glad that things are moving forward for you, it sounds like you are getting good care.

 

How did your weekend go? Did you make it to church?

 

My dad had a bone marrow biopsy a couple of years ago. (they thought he might have had multiple myeloma, but thankfully, it was negative)

They did it in the office as well. But to tell you the truth, I would have rather he been in the hospital. Although he came thur it great, he was 86 at the time, and actually came out of the office doing a little irish jig. He's a crazy old man. LOL!!

 

Again, I am very happy that you have found the doctors that you have, and that they are willing to help you out. What will happen when you start treatment, do you know yet? As far as costs go, I mean. I really hope they help you out there too.

 

It is going to be a beautiful day today here in So Cal. We are blessed that way for sure!!

 

Happy T-Day to you and your family!!

Rita

kgirl   240 posts since
Aug 16, 2009
Currently Being Moderated
28. Nov 24, 2009 2:06 PM in response to: wtarlow
Re: Partially diagnosed

Good morning Honey...it's a beautiful day here in Northern California also, perfect autumn weather.  Listen darlin' I've had my share of pity parties, as a matter of fact you're in

wonderful company when it comes to those particular parties.  We, sometimes, ask "would you like some cheese with your whine??"  It's perfectly normal to feel blue, sad,

frumpy, etc.  You've had a major shock to your system and still know you're facing more "unknowns".  Try not to fret about wearing sweats and flip flops, no makeup, etc.  This

too shall pass and might get a bit worse before it does.  If you feel self absorbed it's probably because you are.  It's my opinion that anyone who gets a diagnosis of cancer

withdraws into themselves for a period of time, a self protection mechanism, not  unlike shock.  I think I was in shock for awhile because of the diagnosis and the speed in which

I had to prepare for chemotherapy, and this involves a bit of preparation.  PET Scan, BMB, multiple blood panels, Port Installation, medication preparation, etc.  My bone marrow

biopsy was done in the doctor's office, and in reading through the boards, I see that some are done in the office and some in the hospital.  I'm assuming bilateral means both sides

and mine was just one sided, so maybe that figures in to where the BMB is done.  Don't know for sure.  I'm fairly confident that your doctor wants the results of the BMB and will then

be more able to answer all of your questions, just a guess.  I don't think your lack of insurance plays any part in where this procedure takes place.  As far as treating you

aggressively, I'm all for it.  I also was treated aggressively, went from diagnosis to four days in hospital to the following Monday the PET, Port placement, etc with Chemo following

on Tuesday.  You can see why I think I was a little shocky.  BUT we get through it and move forward.  Honey, once you get your treatment lined up and share with your friends

here on the board, we can, most likely, walk you through what to expect as each and every one of us has been in your shoes.  I just don't want to put the cart in front of the

horse or offer information you may not want or need.  Like Sharon says, keep your arms and legs inside the ride, lock your seat and put your tray in the upright position.

You're about to fly, and crash landing is not permitted!!!!  Peanut Butter Cheesecake brownies????  I knew they were yummy, thought I got a hint of one of my very favorite

foods!!!!  Dang, someday's I wish we could turn a knob and hand goodies through the computer!!  Cookie (Jane) is our resident baker and she always has someting wonderful

cookin' in her kitchen.

Please let us know how you did with your PET and when your next appointment with the doc is.  We're rootin", thinkin" and praying for you.  Have a good patio cleaning

kind of a day!!!!  By the By, if your meds are not working, discuss with your doctor.  There are different types, etc., and while one may work for me, it may not work for

you. 

Kgirl

Wobbles   308 posts since
Apr 3, 2009
Currently Being Moderated
29. Nov 24, 2009 3:25 PM in response to: Honey
Re: Partially diagnosed

Hi Honey,

I am sorry to hear about the confirmation of lymphoma.  It sounds like your doctor is a go-get-‘em type of fellow.  Do you know why you are having a bilateral bone marrow biopsy (BBMB) instead of a unilateral BMB?  All my biopsies have been unilateral BMB’s with the doctors alternating sides of my hipbone.  I realize there are always sampling issues by in choosing a single site for a BMB, but is there more to it in your case? 

I’ve had all my biopsies in the hospital, as that is standard protocol where I live (British Columbia).  You might be right about your lack of insurance being an issue or it could be the fact that you are having a bilateral procedure.

I think we are all altered to some extent by our experiences with cancer.  In my case, I never knew anything was wrong with me until I had a routine blood test that showed that I was both anemic and neutropenic.  It took another year before I began to sense that something was wrong with me.   Most of my problems revolve around feelings of fatigue and weariness.  I can honestly say that I no longer walk with a bounce.  However, I have learned to find my joys in the small things of life.

It is good to see your humor is still intact.

You can send some of your good weather up to those of us living in BC.  We’ve been inundated with rain for the last month and could use a period of sunny skies.  We'll send you moisture for your dry forests.

Happy Thanksgiving to you,

Joe



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