How this journey began... and continues.: The Leukemia & Lymphoma Society Community

138 Replies Last post: Mar 19, 2010 10:04 PM by sha_shelt 1 2 3 ... 10 Previous Next

Karol

116 posts since
Aug 27, 2009

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Sep 2, 2009 1:57 PM

How this journey began... and continues.

It started out as a trip to the doctor for my husband back in 2006... he was diabetic and had an ulcer on his foot. The Doctor had us go to the hospital and have the wound cleaned and debrided by a surgeon. so after a long day I headed home alone since the wound on his foot was much worse than we had originally thought. I decided to stop and pick up some dinner for myself and came home and shared it with the cats. I little bit later, I got so sick I was vommitting for over an hour straight. I never thought it was possible to do that but so it was. I thought it may have been some kind of food borne illness and drove myself to the hospital which is only about a mile from home (not the same one my husband was in mind you... no, he had to go to the one where the doctor has privileges) anyway... the doc there thought that it may be my gall bladder, so they did an ultrasound.. it was inconclusive, so a CT scan was needed.... I went to sleep sometime during this and woke up in a hospital room. A surgeon (oddly enough, the same one who had worked on my husband at a different hoptital the previous day) came in to talk to me and told me I had gall stones, but what really was concerning him was that my spleen was massively enlarged. He told me that an oncologist was gpoing to come in to talk to me. Meeting the onc was not what I expected... I had a mental picture of some crotchety old man... instead here was a young man, probably 15 years younger than me and I felt odd. He was very blunt. ( a trait I have come to respect and enjoy(?) in him as he has seen me trough the journey so far) He told me that he needed to do a bone marrow biopsy to determine what type of cancer I had. you could have knocked me over with a feather. it was the last thing I ever expected to hear. anyway had the test done and went home and cried. it was the only time I have allowed myself to give into the self pity. I decided then and there that I was NOT GOING TO LOSE THIS FIGHT! I kept it from my husband until I got the test results and diagnosis back. Stage 4 Splenic Marginal Zone B Cell Lymphoma... what a mouthful! My dear husband cried when I told him and I decided that he had to help me fight and to stop crying for me. The next step for me was to have my spleen removed... oh yes, they took my gall bladder out too. I had two stable CT scans after that and then came the third... my lymph nodes had doubled in size. PET scan and CT guided biopsy followed, just to make sure we were still dealing with the same thing. Yep, then came chemo... mine was R-CVP. you know how that goes... well I'm coming up to my 3rd scan since chemo..... will see how it goes.... in between chemo and now, my husband lost his battle with diabetes and heart disease

Karol

sha_shelt

636 posts since
Apr 3, 2009

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1. Sep 3, 2009 3:32 PM

in response to: Karol

Re: How this journey began... and continues.

Hi Karol,

Don't think I've ever formally welcomed you to the boards and for that I'm remiss! So...welcome!! Have some coffee...or maybe tea or lemonade? Your journey so far has taken a lot of twists and turns. So sorry for the loss of your hubby in amongst dealing with your own issues. I can only imagine how surreal it must have felt for you to go into the hospital thinking you had food poisoning or at worse, gall stones and then be told you had the "big c". It's crazy enough when one already think they know what "it" is...but to get basically blindsided by it - yikes!

I smiled a bit when hearing about your brief pity party you allowed yourself - sounds a lot like me. I still try not to fall into that and am pretty good at avoiding it most of the time but there are moments... Recently I don't think it was so much a pity party as just more like my spirit had taken a summer vacation and forgot to tell me where it had gone. lol I completed the treatment protocol for my 6th round with the beast in June and by mid-July I could already tell it wasn't going as planned and I'm going to need "something" done again and will find out what "that" will be in a couple of weeks. My PET/CT came back hot in the places I knew it would and possibly a couple of others too. So as I posted in Barb's thread....que sera, sera.... But self-pity is not a place to be if we are gonna win this fight huh?

So when is your next scan? Are you feeling OK? Anything new/unusual pop up since the last one? Not having had any real symptoms even before your diagnosis doesn't make it any easier to have a hint though. Ahhhhh.....lymphoma....what a tricky witch you are......

How about a refill on that drink? Maybe a nice bowl of ice cream?

Sharon

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Karol

116 posts since
Aug 27, 2009

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2. Sep 4, 2009 3:08 PM

in response to: sha_shelt

Re: How this journey began... and continues.

Hi Sharon,

Thanks for the "official" welcome, but truthfully, everyone I've met here has made me feel welcome. It has been wonderful for me to be able to communicate with people who understand.

You know, hindsight is 20/20 and if I look honestly, there were signs that something was amiss. I was just too busy with my job (managing a restaurant) and taking care of a bedridden husband to take time to notice. During a three year period.... I was always tired, and thought to myself "who wouldn't be with all I've got going on" My doctor found that I was mildly anemic and "should eat more greens" I had lost weight, but since I was trying to I thought it was great that I was successful. My appetite changed, but again I attributed it to being tired and just dealing with stress differently. The same doc who told me to eat more greens also said I had fibromyalgia, which is what he attributed the pain in my legs to... Other than that I felt better than I had for quite some time! I switched doctors due to a change in insurance and things went on as usual for another year to 18 months. Then the gall bladder attack and so forth. My onc and I are figuring that the lymphoma was there for several years before it was found, just by the stage I had gotten to when it was found. After all it was stage 4. Which, BTW, after all the research I've done is not unusual since about 75% of cases of SMZL are like that.

My scan is coming up in two weeks, and yes I am already really nervous about this one. I found a lump in my leg in an area where there are lymph nodes. my neck has been kinda stiff for weeks and the glands are swollen. My appetite has changed again. And quite frankly I just have a sick feeling in the pit of my tummy.

I made boneless country pork ribs and potato casserole for dinner last night and did manage to eat one rib and spoon of potatoes. It tasted so good but I just had no appetite. there was a time when I could have eaten it all in one sitting! Oh well, I have dinner for a couple of nights.

thanks,

Karol

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Cookie Monster

514 posts since
Apr 9, 2008

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3. Sep 4, 2009 6:29 PM

in response to: Karol

Re: How this journey began... and continues.

Hi Karol,

My condolences on the loss of your husband. If you don't mind, I'll be praying that your scan comes back very boring. It could be that the change in your appetite and swollen glands are a virus of some kind. It seems with all the stuff on your plate lately that you could have gotten run down and caught something. Also, the grief process brings its own variety of issues as we go through the stages of grief (anger, denial, bargaining, depression, acceptance).

It's good that you're still eating even if it is only a small amount. Have you talked with your oncologist about maybe moving up the scan? I had that done once when I found a lump on my head and a swollen node on the back of my neck. Fortunately, it was a horrible zit that was draining into the node. My oncologist and his staff understand the strain of waiting for the next scan and especially if you have "symptoms", phantom ones or real ones.

Are you doing anything special this weekend? Forgive me if you posted something about that and I've gone off and forgotten what you wrote.

Hugs and blessings dear,

Jane

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sha_shelt

636 posts since
Apr 3, 2009

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4. Sep 4, 2009 6:33 PM

in response to: Karol

Re: How this journey began... and continues.

Hi Karol,

Yep - that 20/20 hindsight thing. Feel like we should be walking backwards so we could pick up on things quicker! lol But hey - it is what it is and it's not what it's not and there's nothing we can do about anything til we know it. I think most of us with the more indolent kinds of lymphoma probably had it for quite awhile before diagnosis. Even my diffused large b-cell (original diagnosis + 2 relapses) was 'follicular in nature' and not too aggressive and it's quite possible I had both the DLBC and the fNHL at the same time.

I've grown to be quite laid back with the thought of relapses. My first one (in 2005) - OMG did I freak out for awhile! I had been in remission for 3 yrs and figured it wasn't gonna come back but right around that 3 yr anniversary - and about the time I got laid off from my job and had to find a new one - a node pops up...and grows...and no matter how hard I tried to ignore it, it grew some more.... until 8 months had passed and I could ignore it no longer. In the meantime I'd found a new job, become established, had good insurance coverage and finally come to terms w/ relapse. Thankfully it was confined to the one location and 3 R-CHOP obliterated it but not for long. And we were off to the races again... +4 more times now..

So hang in there with the "scanxiety" thing and remember to breathe -it is your friend. <smile> And as for the loss of appetite, just eat what you feel like, when you feel like it. I've gotten to where I just kinda graze all day long. A few bites here, a nibble or two there. Any kind of large meal actually makes me nauseous.

All will be well, kiddo...all will be well....

Sharon

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Karol

116 posts since
Aug 27, 2009

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5. Sep 8, 2009 11:38 AM

in response to: Cookie Monster

Re: How this journey began... and continues.

Hi Jane,

Thanks. Prayers are always welcome. Looking back, the appetite has been dwindling for a while. getting the scan sooner wont make much difference since I have to wait until his office gets the results from the hospital. my husband was retired army and while I appreciate that I have insurance for the rest of my life, whether or not I have a job, their rules can be complicated. When I had chemo, I had to go to a cancer treatment center to have it done as they would not pay for it to be done at my oncologists office.... but they did cover 100% so how could I possibly complain about that? Back to the appetite thing... I'm wondering if it has anything to do with menopause? I'll have to look into that. I hate the hot flashes and night sweats since I don't know which is responsible for them....

BTW my middle name is Jane... named after one of my Dad's sisters.

Didn't do anything particularly special except enjoy each day as the gift it is. Have you ever read "The Shack" ? My brother introduced me to it last year, his study group at church was reading and discussing it. A heartsearching book.

Karol

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Karol

116 posts since
Aug 27, 2009

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6. Sep 8, 2009 11:48 AM

in response to: sha_shelt

Re: How this journey began... and continues.

Hi Sharon,

Food that appeals to me is heavily seasoned. If it isn't I have a hard time getting past a bite or two. I just can't be bothered chewing on a sponge. I like a good salad, with spicy ranch dressing, but I can't eat too many or they give me issues. your "all will be well" comment reminded me that it will be all right in the end and if it is not all right then it is not the end..

Karol

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Cookie Monster

514 posts since
Apr 9, 2008

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7. Sep 8, 2009 12:15 PM

in response to: Karol

Re: How this journey began... and continues.

Hi Karol,

Yes, I read the book "The Shack". Definitely a heart stirring book to read. The author spoke recently at my former church in Alabama and I understand gave those in attendance the scoop on what the book really was about. If my memory serves me right, it had a lot to do with his own life.

I didn't realize your taste buds were still a little "off". During chemo and for a while after, my taste buds were off too and I needed highly seasoned food. I absolutely hated the taste of water and had to add a bit of "all juice" juice to be able to get in down the hatch. I also know that when the weather is too hot I don't have much of an appeitite. I'm hoping soon it returns to normal for you. I haven't experienced much appetite loss due to chemopause as I "lovingly" (haha) call it.

My hubby and I are on vacation in the Adirondack Park of New York visiting his parents and enjoying some good low 70 degree weather with sunshine. A far cry from the humidity and rain we left behind in Alabama.

Hugs and blessings,

Jane

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Karol

116 posts since
Aug 27, 2009

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8. Sep 9, 2009 6:06 PM

in response to: Cookie Monster

Re: How this journey began... and continues.

Hi Jane,

my taste buds are not still off from chemo but they are off again and I am unsure as to why. I love food usually and this is another change that is causing me concern. I'll talk it over with my oncologist when I see him. hope your vaca is still going great....

As far as I could tell, the book deals with loss and relationships and each time I read it, some different part touches me.

enjoy your day,

Karol

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sha_shelt

636 posts since
Apr 3, 2009

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9. Sep 9, 2009 8:59 PM

in response to: Karol

Re: How this journey began... and continues.

Hi Karol and all....

Yep, tastebuds can be really wonky for quite awhile both during and after chemo. Still find things that I used to like that I just can't stand anymore and I prefer everything more seasoned. Meat, especially ground beef/hamburgers, is for the most part just ickky which is a source of consternation to my hubby who could live on hamburgers. LOL Salmon is another thing that turns my tummy while other fish, especially sardines is just fine. Things I used to find gross now I like and things I used to love I find repulsive, odd cravings, too hungry, no appetite. Weird...... Don't know how much menopause may be a cause but I guess hormones can do the oddest things too.

Sorry to be kinda MIA the last few days but I've pretty much felt like crap warmed over. My back is causing issues right now, hurting down into my hip, causing me sleep problems, problems with walking, and just a general annoyance. Beginning to wonder whether it is actually something structurally out of whack or if those little glowing spots I saw on the PET really are hot nodes and they are pressing against nerves/joints/bones. Sometimes that thought messes with my head as much as the pain does with my body.

Yes, I get around to remembering my own advice and breathe......... lol Monday I'm hoping to get the lowdown on Plan G and y'all will be among the first to know.

Jane-I knew I should have been a stowaway in your suitcase! The water sounds heavenly......even if it is chilly.

Hugs

Sharon

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Karol

116 posts since
Aug 27, 2009

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10. Sep 10, 2009 12:56 PM

in response to: sha_shelt

Re: How this journey began... and continues.

Sharon,

I am so sorry that you are in so much pain! I hope it is something that a chiropractic adjustment would fix and not something more serious.

I know my tastebuds are way out of whack since chocolate has no appeal for me anymore. (used to be able to sit down and eat a whole big bag of the mini candy bars. probably a good thing that they have no appeal.) I've always liked spicy food but now it just has to have a lot of flavor. I do like to snack on jalepenos....

hope your pain subsides soon,

Karol

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kgirl

240 posts since
Aug 16, 2009

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11. Sep 12, 2009 10:10 PM

in response to: Karol

Re: How this journey began... and continues.

Hi Karol. Really just still learning the boards, and am kicking my own behind for not before realizing everyone had a "thread". Would you have a problem providing your email address to me? I notice when I click on your name, no email comes up (me too up until now, I will adjust). Don't plan on inundating you with private emails, would just like to send you an e-card now and then. No pressure either way.

Have a peaceful night and wonderful Sunday.

Stay safe.

Barb/aka kgirl

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Cookie Monster

514 posts since
Apr 9, 2008

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12. Sep 14, 2009 3:37 PM

in response to: Karol

Re: How this journey began... and continues.

Hey Karol,

Just checking in to see how the ole' taste buds are today. I'm doing my Monday routine of laundry but not much else. Just too tired I guess from traveling. Glad to be home too and the cats are thrilled as well.

I here thunder getting closer and looks like our whole week is going to be wet. Gosh, you'd think I was still living in Michigan at the mouth of Lake Huron and all its wet weather.

More later, the laundry is becking for me to continue.

Hugs and blessings,

Jane

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Karol

116 posts since
Aug 27, 2009

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13. Sep 14, 2009 6:24 PM

in response to: Cookie Monster

Re: How this journey began... and continues.

Jane, the tastebuds really enjoyed a jello no bake cheesecake..... I made dinner yesterday... roast beef, garlic mashed potatoes and whole green beans sauteed in garlic and butter. I'll use the leftover roast beef for stirfry beef and broccoli later in the week....

I wish I was hearing thunder rolling! I do love to watch a good storm roll in and over... I too should see about getting off but backside and doing a couple of loads of wash.

Take care,

Karol

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Karol

116 posts since
Aug 27, 2009

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14. Sep 14, 2009 6:29 PM

in response to: kgirl

Re: How this journey began... and continues.

Hi Barb,

I've not yet gotten through all the threads but there is one titled laughter that I go to just for that purpose. How did you get your email to come up? I'll have to check my settings... I like ecards, they can really be funny or make me cry depending on my emotions of the moment....

Take Care,

Karol

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Sep 2, 2009 1:57 PM

How this journey began... and continues.

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