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Thread: Cancer- the six letter word that changed my life.

  1. #1

    Cancer- the six letter word that changed my life.

    I can not believe I am going to post in this forum. Until a week or so ago, I didn't even know such a forum existed. Until two months ago, the idea that any form of cancer would touch my family was not even a passing thought. I don't know if that is normal or if it was arrogant. About a two months ago, my husband started having numbness, tingling and some weakness. Then one day he fell in the shower from being dizzy. We are a young couple so to fall in his 30's is not common for a guy who is always up and about and strong. I had been telling him for a week to go to the hospital and finally after the fall he agreed.

    Long story short, what I thought would be a pinched nerve, turned out to be a astrocytoma grade III/IV of the medulla in the brainstem. They can not be sure what grade it is or what it is, without biopsy, and they are not going to do one, because of the location. Whatever they tell us is from MRI images. I asked for tumor markers and they said so far they have none. The LP came back normal with no malignant cells. However, they wanted to go ahead and start with IMRT for 6 weeks and then do a repeat MRI and think about if or not needing Chemo.

    This is week 5, in another week he will have finished radiation. The side effect he is suffering from the most is maybe fatigue and taste change. Anything he eats doesn't taste good. I think he mostly likes things bland with maybe a bit of spicy hot peppers. Mentally, it took him almost 4 weeks to accept he is sick and that suddenly he has to live his life different.

    I am on autopilot mode, where other than the shock of knowing this and having my brain go to mush, i have been pretty much on point and getting things done. The hardest part is when he gets moody or angry or says things that are hurtful since I'm already hurting and trying to cope and put on a brave face.

    I feel guilty for complaining about this, since he is fighting cancer and I'm just trying to cope. What are some side effect you all had post radiation? and with chemo? with steroids?

    My thought is to be prepared for the days ahead, since this is a long journey, and then try to tackle things without being surprised. Sometimes, I still can't believe this is happening and I worry about a future without him. too morbid? just trying to take it a day at a time. sometimes even a few hours at a time.
    Last edited by GBMsibling; 10-20-2016 at 06:35 PM. Reason: add white space

  2. #2
    Super Moderator Top User
    Join Date
    Dec 2011
    Welcome, Sea. Looks like your post didn't disappear this time so whatever glitch occurred before hasn't happened again. Whew.

    The three most stressful times for brain cancer families are the initial crisis period (which you're past), the initial treatment period (which you're in) and the periodic MRIs afterward. So it's not surprising you're feeling a bit stressed. Sometimes brain cancer families (patients and caregivers) feel like we're walking around inside a glass bubble, where we can see the other people of the world and even, with some difficulty, talk to them, but we are inhabiting a completely separate reality from them.

    (Aleksandar Hemon, who lost his infant daughter to brain cancer, wrote an essay in The New Yorker called "The Aquarium" which talks about this sensation. I don't particularly recommend the essay right now; I think I read it while my sister was in the chronic stage of the disease.)

    I was a caregiver to my sister for 2 1/2 years before she died of GBM. Here are some things I can tell you...

    - The anger may be frustration at what he's experiencing, which would be understandable, but it's very likely caused or exacerbated by Dexamethasone. If he's tapered off the Dex after radiation it will likely improve.

    - Even though it seems to us caregivers that we have it so much easier than the person with brain cancer that we shouldn't complain, surprisingly, it can sometimes seem to the person with brain cancer that the caregiver has a harder time. There can be feelings of guilt about that, too.

    - While it seems like a good idea to educate oneself about what's to come, it can also lead to unnecessary worry, because everything isn't going to happen to everybody.

    However, for most people seizure activity that doesn't look like seizure activity can be an unwelcome surprise. Seizures happen at some point in the majority of cases, and recognizing them as seizures can take some doing.
    Last edited by GBMsibling; 10-20-2016 at 06:58 PM.

  3. #3
    Thanks for the heads up and the words of wisdom. I'm sure in the future I'll need lots of help in how to deal with certain things.

    Today was a not so bad day, but seems the radiation is causing some major taste change to the point he doesn't like any of his favorite foods. Also, the muscle pulling or tension on the back of the neck and now on the legs seem to be the same as before and has not changed one bit. The only thing that has improved is his gait and his tingling sensation along the left body. I wonder if that is due to the gabapentin dose being gradually increased. Anyway, after this just one more week then it's three weeks of rest. Mostly he is bored and yet does not wana see Many people. I'm hoping for few days of normalcy in days to come before having to go and see what the MRI post radiation says.
    This unthinkable thing happened, now have to learn to handle the situation the best way possible.

  4. #4
    Anyone else had to struggle with abscess formation in the middle of a brain tumor? I'm guessing it is due to low immunity from steroid use? This is the second time being hospitalized for a abscess.

  5. #5
    Super Moderator Top User
    Join Date
    Dec 2011
    No... we didn't, anyway. Where is the abscess? I haven't heard of Dex lowering immunity; I know that Temodar can do so.

  6. #6
    So far, I've had no no abscess growth, however I came down with shingles about three months into treatment. I was given Valtrex and Gabapentin to control that.
    Also about about a week ago just as I was
    weaned off Dexamethasone (for the third time),Ideveloped a nasty rash in my groin area which turned out to be a yeast infection. it has cleared up with several days applicationof medication. Best of luck as you travel this difficult path.
    GBM-IV right temporal Aug 2013, 80% initial resection, radiation concurrent with Temodar Sept/Oct 2013, 5-23 regimen began Dec 2013 concluded May2014, stable scans until Oct 2015showed new growth.follow-up Dec2015 confirmed continued tumor progression.2nd resection Feb.2016, Immunotherapy March/April2016,May 2016 MRI showed progression,3rd resection June 2016 95% of mass(residual from original resection plus new growth), ,duly 2016 MRI again showed tumorprogression/2nd round of radiation July25,2016was 10 treatments July 25 through August ,5 2016. returned to work Aug 9.Working very limited duty=no driving,lifting,or climbing poles or ladders.began Avastin infusions Sept 20 and CellDexRindopepimut Vaccinations Sept 22 respectively. Avastin every 3 weeks and vaccine monthly.,October's scan showed slowing tumor growth and actually some noticeable
    decrease in tumor size. Mid October began low doseDexamethasone (1mg per day, )again when balance issues returned.

  7. #7
    My husband had the taste problem and throat infections for which he was given Valtrex during his treatment for Lymphoma so that's really not in the realm of this forum. But the taste problem was enough he couldn't eat anything for awhile and he lost weight. He was SO hungry. We kept experimenting and finally found one thing he could eat.....mashed potatoes. They were very bland but he didn't care. He just wanted food. That's all he ate in the last 2 months of his chemo. His weight came back on and he was a bit happier despite not feeling too well. Hope this helps some.
    His fight is over. How brave he was. 47 years of love.

  8. #8
    Thanks guys. The first abscess is in his right buttocks and now there seems to be a second one on the left one. We will know how big it is tomorrow after the I&D. We were told the low immunity and just bad luck causes this and they are gonna find out if any fistulae is present that is feeding into the old. As well as check out the new one.
    Anyway, he is being weaned off of dex post radiation so idk if that has anything to do with it. This is just start of the journey and already so many things are happening at the same time. I guess going through this it gives us patience and long suffering to deal with the cards we were delt.
    Last edited by seaofgladness; 10-30-2016 at 01:50 PM. Reason: Wording

  9. #9
    Yes,you are on a journey. As in my signature, my son had a benign brain tumor and now we battle epilepsy. But I met many people who had cancer. I don't post here often since David's brain tumor was benign. But I've always been touched by the courage I read in this forum. I was always so touched by the people I have met along the way. God bless...
    His fight is over. How brave he was. 47 years of love.

  10. #10
    Surgery went well. He has a drain and they did find a tunnel in old wound. Drained it. Now just wound care and pack and care for it.
    It's very nice to meet good people along a difficult journey. Made me think if I was kind to strangers who I had met who were maybe going through something hard.


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