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Life Between Scans

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

I am 3 weeks into the Gleevec treatments and am due for a Pet scan and a brain MRI.I have vacillated between confidence, hope and fear. I think it's normal to feel all of these things, especially when you are just beginning a new treatment,where others have failed.

I was just wondering what all of you do with your "feelings" while you wait for your results. I am trying to keep busy - re-doing my son's bedroom from floor to ceiling with my husband and praying an awful lot. I had a bad day yesterday (i.e., pain, nausea, fatigue) and I got myself so worked up about the medicine not working that I had a big cry and my husband had to give me a pep talk just to calm me down. I have been pretty tough through this whole thing but, there are days that I just get tired of it all and it usually coincides with the tests that measure progress.

So, how do all of you cope? I hope the answers will help all of us, as there seems to be a recurrent theme with the pre-test jitters. If nothing else, we can at least commiserate and not feel isolated in our fears of relapse or progrssion.

Thanks all!!

Much love,
Hollyberry

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My last CT-scan showed a tiny 2.7 mm 'something' on my left lung. Because the 'something' is so tiny, both my chemo and my radiation oncologist said to just ignore it; that it's too small to warrant a PET-scan or exploratory surgery, is probably 'nothing' at all, and we'll look again in July with my next scheduled CT-scan. Although I was ready to go immediately back into chemo (which just ended March 26th after 5 months!), they decided to stay on course with 8 weeks of pelvic radiation and totally ignore this lung thing, which they both say is nothing. So, I sure know what you mean about trying not to worry between diagnostic imaging!!

For the most part I've always been one of those 'put-it-in-God's-hands' people, and not a worrier by nature. But cancer strains my typical "never-worry" philosophy, and sometimes, in a dark moment, the fear breaks through. But I keep very busy, as I still am employed and my work is very distracting. And my grandchildren and my garden can keep me too busy to think! I also find reading a good book is a wonderful escape from reality. I take about 50 photographs a week, and that forces me to always be on the lookout for the beauty that is all around us. And I bought myself a little pet bunny, and stroking his soft fur and watching his antics never fails to calm me. I have given my cancer a lot of thought, and for the most part, I am at peace with however this turns out. I WANT 30 more years, but if I can get 5 more years where I still feel reasonably good, I can make it be enough and am peace with that. That probably helps me cope the best; the acceptance of whatever may happen, and the hope that I still may make it out of this cured.

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Linda,
You have quite an arsenal of coping tools; I'm so proud of you! I, too, read a lot, can't wait to get dirty in my garden and am also at peace with either outcome. I hope,also,for the best as I have so many plans!!
Thanks for the great suggestions. I hope everyone gets a little help from this discussion. If we talk about it, it doesn't seem quite so scary or overwhelming.

Much love to you, your family and your little bunny,
Hollyberry

longingforhope's picture
longingforhope
Posts: 61
Joined: Apr 2009

Hollyberry,

It's probably the hardest part of cancer even for the caregiver the eternal waiting between scans. My husbands original prognosis was not good in August 2008 and the Oncologist thought with a 5 cm tumor from melanoma that had metasticized there wouldnt' be much hope. However after 2 grueling surgeries and removal of 20 lymph nodes topped off by 5 weeks of interferon and now an 11 month ritual of interferon shots 3 times a week by the grace of God my husband has beaten the odds so far. It's been a tough road and we have 2 teenage daughters that keep him going but the fatigue and depression he suffers are so debilitating at times he can't get out of bed. It's nice to hear that people do find ways to cope with the stress and I will pass along the suggestions to him. I pray for you that they aren't waiting to long to scan your lungs. Especially in women I think we have to be aggressive and proactive because we tend to be discounted. A female Oncologist wouldn't hurt either.

Good luck and you are in our prayers.

Longingforhope

patti50
Posts: 3
Joined: Apr 2009

Hi Linda -- i am patti -- mostly a reader not a sharer ---your story is close to mine in that i have a tendency to put alot in GOD's hands he seems to handle so much better than i- you do have many coping mechanisms one being my favorite a bunny---i have my animals as well and yes they bring me much comfort and peace while i sit and talk to GOD--how fortunate that you also have grandchildren--i would love for one of those---my daughters choice not to have one and give her credit for knowing that---after all there really is alot out there to enjoy and see beauty in------i will not keep you just wanted to say hi ---- and let you know i took comfort in your post and admire your strength-----i have been diagnosed with stage 1 Breast cancer and stage IV lung cancer and receiving chemo and doing just fine-----i will keep you in my thought and prayers and by the way ---- trying not to sound goofy you look beautiful with no hair----i should be that lucky........remember Linda in your dark moments is when GOD is with you even more so......Have a beautiful day :-)
patti

tonybear
Posts: 92
Joined: Mar 2009

after coming home from the hospital i thought i'd jump right back into life as normal and go full speed ahead. i wasn't warned about what i'd face going back for those check ups. my first one i was a wreck for a week before hand. i did my 6 month about a month ago and i did good through the blood draws and test. then the doctor walked in with the results and i was doing all i could to stay cool looking on the outside. both check ups went good, but still i know that for the next 5 year i am going back again and again for check ups. what was once a normal life is something i will never know again. so i have to adjust my thinking, my habits and life to cope with my new life. i am blessed to have a life, i am thinkful that i have another chance to walk out and see the mornings. i finally spoke to my wife about how much cancer is still on my mind, and always floating around near the surface. i prayed before cancer, i still pray now but with more compassion and thought about what i say. i don't think to much has not changed. i am due for another check up at the last week of june. truthfully, it has been on my mind starting right after we finished my 6 month and made the next appointment at the desk outside the doctors office. after 54 years i am having to make major adjustments to my life. i am finding life to be a blessing and a challange everyday.

shoppergal
Posts: 118
Joined: Mar 2009

Trying not to think about cancer can be really tuff. After my diagnosis,and surgery, when I first started chemo my onc sent me for a pet/ct scan. I wasn't really worried at this point, but when my onc called me with my results I got hysterical crying, and that was the first time I cried.She told me there was something near my left kidney that lit up. I was really shocked and never expected it,plus it couldn't be biopsied because of the location. It was decided that I would just continue the original chemo and hope that it would take care of things. When I finished chemo after the 6 months I had another scan and this time I was worried what would show up. Waiting for the results for me was worse than anything, I would rather know right away even if it's bad news. This time the results were perfect and I was thrilled! A month ago I went for my six month check-up and scan, and I was as calm as could be. Then I got the call from my onc, and I could just hear in her voice, something wasn't right. Once again that something near my kidney lit up,and it still can't be biopsied. So, the only thing to do is wait three months and just keep watching it. I have to say I was a little freaked out about all this and once I got over the shock, I decided not to worry about something I don't know what it is. It's hard to do that at times but I realized if I constantly worry, I'll never be able to live my life the way it should be lived. I'm also waiting to get an appointment for my first colonoscopy since before surgery. There are times when it just pops into my head unexpectedly and I let myself think about it briefly and then I just throw it into the wind. I try to keep busy with working, reading, spending time on the computer, anything that I enjoy. I also realize that even if the next scan comes back ok, I'll most likely worry even more for the next scan because of this last one. I've spoken to my dr that diagnosed me about the worrying and he keeps assuring me that it's normal as is worrying about every little ache and pain, and checking out every bm! Now that is something I never did and now I do it like I'm looking for gold or diamonds! I also try to keep a sense of humor and keep my faith. No matter what happens I know I'm a fighter and I'm just not ready to give up the fight, there's too much for me to lose. Stay strong!!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

It was so funny to hear you mention examining your bpwel movements. My grandmother lived with us when I was a child and she always said "Don't you dare flush that until I get a chance to look at it!", as she believed she could keep us healthy if she could stay on top of what our bowel movements looked like. She'd take a good look, and then the next day you might be getting a jigger of prune juice and some cod liver oil with your breakfast, or you might have to eat grits instead of oatmeal! So, all my life, I guess I've been a 'closet BM examiner'! As I got older I took over her role, and you know, I think she was on to something. I have always adjusted my diet based on my daily 'inspection'. (EEEW!) hahahahahaha! Thanks for the giggle!

bangormom
Posts: 59
Joined: Dec 2008

I guess this is where I can say I am 'lucky', I don't have to check my bm. Ha sorry but I can picture it. I do understand the worry tho so I know it's not a joke. Since I have cancer in just about every lymphnode I have one or two that are visable and or you can feel them. So I know if a treatment is working or not, if it's working the node on my neck usualy shrinks. The one treatment I was on I was allergic to it so that was a no go, the second called Sutent that one didn't work I was only on that for 2 months, then I switched to a drug called Nexavar, and within 6 day's the node on my neck shrunk! I was so happy that meant that it was working yippie! But then guess what folks, I had an allergic reaction to it on the 10th day and had to have iv steriods with a denadryl drip that took me off of the nexavar for a month and started at a lower dose from 800mgs to 600mgs, well I only got 200mgs and wound up in the hospital again. So now I just keep feeling my neck, I might look silly feeling my neck and collarbone, but hey it makes me feel proactive.

Maryann

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

My aunt used to write me letters when she moved out of state and would always ask about my BM's and I thought that was so gross and silly. Well, now I have a colostomy bag and am so up close and personal with my daily duty that I actually had to tell my onc when a blood pressure pill wasn't being digested, as it was a time-release med. I irrigate my colostomy once a day so that I don't have to wear a bag and I have to keep an eye out for volume and blood. The doctor now asks me every time he prescribes something new if I have any evidence of the pill. I guess he thinks I'm silly but, if I didn't mention it , I would still be taking a medicine I need and not getting any benefit from it.
I have my PET/MRI on Tuesday and I am trying my best to keep busy and not let it overwhelm me; there is just so much riding on this one and that's why I am a little preoccupied with it. If there is something in my brain, they will take me out of the new clinical trial I am on and this one is the most promising thing they have right now. In fact, after this one, there isn't much else to offer me and I am really counting on this mew "wonder drug". It is supposedly very effective for people with my cancer and I have the gene mutation that is required for it to really work well. To say I would be disappointed if I got kicked off the trial would be a huge understatement. I am counting on it to get me through to next June and my last child's High School graduation.
I am having a garage sale tomorrow and Saturday, and if I make enough I may try and talk my husband into a 3-day trip to Vegas just to get away together and forget about cancer for a while.And I must really want to go, as I HATE doing garage sales! But I figure it will keep me so busy that I won't have time to think too much about Tuesday. I'm sure it will take me 'til Sunday night just to get things cleaned up and the stuff I didn't sell over to the homeless shelter's re-sale shop.
Hoping all of you are feeling well and enjoying some good weather. We have 70's and 80's for the weekend forecast and I am soooo looking forward to that, for a change!
Hugs to all,
Hollyberry

P.S., Maryann, I hope they find something new and effective for you- I'll keep you in my prayers.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Thanks for the sweet words on my bald head. I took that photo shortly after I started chemo and lost my hair. Since taking that photo, I have gained 15 pounds from the steroids & chemo, and lost my eyebrows and lashes now, too, and have never felt LESS attractive in my life. I know that the big surgical scar, the bald head, and the weight gain are NOTHING in the 'big picture'. But it's still hard to look in the mirror and feel ugly. So, thanks! We will all get through this, using any 'crutches' we can find, taking comfort where we can, and putting it in God's hands as best we're able. ((((((Patti)))))

tonybear
Posts: 92
Joined: Mar 2009

after being the hospital for a few weeks i came to see those with no hair as a sort of badge of courage and honor. much like my dads medals from world war two, they have been earned because of the willingness to fight and face the enemy one to one, face to face, day after day. keep your smile and know i smile when i see that picture. god bless. tony

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Oh Linda I wish I could have had your courage when I lost my hair twice from the treatments. Unfortunately my head wasn't as beautifully shaped as yours and you can certainly carry it off with that pretty face of yours - I just looked silly, lol. Thank goodness I found a great scarf that had bangs sewed into the front of it that even fooled my oncologist who used to say 'haven't you lost your hair yet?' when he first saw it on me, thinking it was my hair sticking out the front so that made me feel more 'normal' with it on, so easy to pull on too when someone came to the door.

You are right in saying that in relation to the big picture our hair loss is a small thing but it absolutely isn't in reality as we all know. Our hair is such a big part of a woman's identity and the shock of losing it, even after we were warned, is truly traumatic indeed.

You make going bald look great and the courageous message you send by posting that picture is worth so much to all who see it.

You are a true survivor Linda, keep up the fight !!!!!!! What a true inspiration you are.
Hugs, Blueroses.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

You are all too nice to me, and at a time when I sure can use the 'nice'! THANK YOU! I've started daily radiation now, with 2 rounds in and 29 to go. Although the radiation hasn't yet made me feel ill, the intensity of DAILY treatment for such a prolonged time dominates my days now in a way that chemo didn't. Radiation is such a surreal experience, lying there all alone and deliberately still in a darkened room, with the machine slowly whirling around me, and classic rock-n-roll playing in the background, with a roomful of bald comrads waiting in the next room for their turn.

There are some consequences to running around flashing a bald head, as my scalp is now sunburned and PEELING from working in the garden hat-less over last weekend. But I like thinking of the seeds that I planted (larkspur, marigolds, love-in-a-midst, and lunaria), some already sprouted, as I lay on the radiation table. I planted 3 tiny hollys and six tiny tree seedlings also, a gesture of optimisim, as it will be many years until real trees will stand in place of the tiny rooted cuttings I planted, and I want to believe that I will be here to see how my garden design looks 'grown in'.

tonybear
Posts: 92
Joined: Mar 2009

i was blessed not to have to have chemo. i only had the radiation to deal with for 2 months. like you said the time in the machine is very surreal in the room. i use to day dream about so many different things and places. i sure did get a lot things accomplished in my own dream world. like how i would spend all of that money i was going to win when i hit the lottery. the dream cars i would buy, the places i would visit. how i would fly to a ball game in chicago on a whim. the house i was planning to build was being worked on. i am still desiging the house by the way. for the real world. i had prostate cancer so i started out with some brachy therapy which is 3 sets of high doses of radiation via cathoders, can't spell it. then i had some tomo radiation. i am not sure if my routine would help you or not, but here it is. i would lay down to rest for an hour before the raditaion. drink at least 2 bottles of water or green tea right before i went in. then drink plenty of fluids afterwards. i was told to do this to flush the radiation out of the body. i got 3 tattos for my tomo radiation so i could get my body lined up by some lasors lights on the walls and ceiling. the only problem was they only put dots on me. no dancing girls, no cross bones and skulls. just dots. the limited choice in tattos made my wife happy. i planted some onions, sweet potatos, tomatos and peppers, but i didn't mark anything. the onions i know, but the little green leafs coming up, well it is beyond me what that is. hopefully i'll know in a month or two. keep your hat on and take of yourself. tony

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Tony: I have 3 tattoos, also, little black dots to line me up for the external radiation. I was hoping for little flowers or hearts or tiny bumblebees, but just got little black freckles!

I will also get 3 internal (vaginal) brachy radiation treatments at the end of my daily external pelvic series of 28 daily rounds, but internals will be 1 week apart. I try not to think about them right now, as all of women I know who have confided in me about their experience with vaginal brachy confessed that they were traumatized by the degradation and humiliation of the treatments. (apparently almost every orifice gets something inserted into it simultaneously.) The way it was described to me, when it's over you get in your car, cry hard for a few minutes, pull yourself together, and drive home; ...and then come back the next week for more of the same. But it's just 3 times. Anything 'finite', and short-term I can deal with, as long as I see the end in sight. I can do it 3 times. ugh.

On a happier note, if you have any questions on your garden, I'd be happy to try and help. I've been an organic gardener for decades now, and have had little things of mine published in 'Organic Gardening' magazine twice. I LOVE to dig in the earth!

tonybear
Posts: 92
Joined: Mar 2009

my brachy was not an easy thing to do. they inserted 18 caths in me and i had to stay pretty much very still for 2 days. well, i wasn't still enough and they had to adjust 8 of them. oh my God that was the most painful thing i have ever been through. no warning of what was about to happen to me and nothing to kill the pain. i was on a morphine drip with the push button already but that was like kool aid when they adjusted them. my nurses are my heros for talking me through it and being there for me during that time. after that i had a few days off then started the tomo. i think your treatment sounds just as bad. is there anything easy with all of this. okay enough of those memories.......
i think you may find this strange, i made some planters about 10 foot long and maybe a foot wide and put them on top of an old 8 foot folding table. i covered the table with some extra terracota tile i had in the garage. the table idea is so i don't put my knees through anymore wear and tear by bending down and getting back up. i don't know if that borders on the smart side or lazy side. anyway, if i use the store bought top soil do i need to add anything to the dirt. like some type of fertilizer or magic growth stuff. i do live next to a pasture with the natural cow patties. i heard that it is good for plants. i am not to sure about that approach with crazy cows chasing me and the turkeys and coyotes laughing at me. or is it just as easy to go to the home depot and get the store bought stuff. my wife ask me if i have ever planted a garden before because of how i am doing it. i didn't lie since i didn't answer. it has been many moons ago when i lived on indian land in oklahoma since i did anything even close. if can get some sort of food to eat i will be happy with it all. the onions ae growing okay but the rest may need some help. 2 days ago i planted some other things. beans, cucumbers, lettuce and maybe squash. okay it is late i am getting brain fade. any help will be appreachiated. i need some sleep, i can't spell. take care and god bless. tony

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I love raised beds for gardening and like your idea a lot. If my knees ever get bad, I plan to raise a LOT of my beds. I've seen gardens on raised beds where even people in wheelchairs can weed and tend their gardens.

Manure should really be composted before it's added to a vegetable garden, or it can burn the roots away. Instead of gathering clow plops, when you go to buy your top soil for your planters, consider getting some bagged Compost. I also advise that you get a bale of hay (or a couple bags of shredded pine bark mulch if you live in a swanky neighborhood and need to keep your garden 'attractive' from the street) and spread a 3 - 4" layer between your plants to hold in moisture and keep down weeds. It's better to water deeply when the soil feel dry when you stick your finger in about an inch, than it is to sprinkle lightly every day, and try and water UNDER the plant leaves (just the soil) so you don't get molds. I don't beleive in using Miracle Grow, as it results in a lot of unneeded green leaves and no more veggies, and makes your plants like a junky needing more and more fertilizer to feed their too-lush growth. Are your planters pretty deep? Some plants really send down deep roots.

tonybear
Posts: 92
Joined: Mar 2009

if i told i you don't know a lot about a garden that would be an understatement. ha i know very little. my first planter i only use about 3 or 4 inches of dirt. the second one has dirt to the top and that is about 6 or 8 inches of dirt. the shallow one actually has onions growing and either red bell peppers or tomatos. or that was what i planted. it is a small leafy plant so far. the second planter with beans squash lettus and something else has stuff ( green sprouts ) about 3 or 4 inches after one week. we have had a lot of rain here in texas for the past 3 weeks. and today it was about 85 or 90 so i guess that helps. as far as a swanky neihborhood. we live an old "hood" about 25 years old. we are the last house on the road. we have one neighbor and from there the other people live up the road. the rest are fields with cows coyotes turkeys and i hope no bears. oh yeah we have a ****, and occassional bobcat (so says the wife). it's not like we are way country, we are 3 minutes from the wal mart, movies, places to eat and target and the other things of use. there are some horse farms around here as well. go to google maps and put in, alan drive, burleson texas 76028. we are the house at the dead end of the street. in the satellite pic there are 3 trees in the front yard. 2 of then are huge pecan trees. the old limbs are great for cooking on the grill. well it is bed time. thanks, tony

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Just saw your post of gardening.... if you are close to a horse farm you are close to a gold mine for your garden. Unlike many manures horse manure fresh or dried can be added directly to any plants and it will not 'burn'. Plants will thrive. I mix a shovel full of horse dew and some water and give all my plants 'tea'. It is AMAZING!! We have a 12 acre garden and love to use horse manure on EVERYTHING!! Happy gardening.

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