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melsgirl's Message Board Messages

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On Aug 04, 2010 7:29 PM cpnmorgan wrote:

Every two months has been my husband's schedule. We are working with Duke University in North Carolina. We were also told every two months for two years. 

Holly,

Mel had his first MRI a month after doing the radiation and chemo...then we had a couple more...especially when we began noticing new deficits...the ironic thing to me is that the last MRI was stable...in June...and Mel passed away this Monday, Aug. 2.  We were dx Feb 16, 2010....I think what did him in was the decadron for the swelling...he had so many side effects from the steroids, and then new meds to counteract them...more issues daily it seemed.  The decadron gave him Thrush, which the diflucan cleared up but also raised his liver enzymes...which gave him jaundice.  As you can see it changes every day...If you are not comfortable with the MRI schedule they give you, you can always ask for one sooner rather than later.  God bless you on this journey....I will keep you in my prayers.

In hope and solidarity,

Tracie Abbott Langley

http://www.caringbridge.org/visit/mellangley/journal

On Aug 04, 2010 6:53 PM mywillie wrote:

tracie my name is lynn my husband has had gbm since june of 2007 .with the help of the good lord and the doctors at nashville tenn. it has been 3 years .i don't know about you but i have not had my real husband since june of 2007. but no ones knows the caregiver has been lost since day one . my heart and prayers are with you. please let me here from you. i feal so along and i feal so guilty for it . am i wrong . am i the only one that has that feeling or is that part of it.  may the good lord be with you threw this lynn.

Oh Lynn...I know just exactly what you mean...My Mel changed from the moment he awoke from surgery.  He still had his sense of humor, but gradually he became disoriented to time and place, and had severe short term memory loss.  Many days I cried and begged God to give me back my "old" Mel...but it never happened.  I eventually learned to cope with what we all call here the "new normal"...everyday was a rollercoaster ride...some much better than others.  All in all I would say that in order to remain strong you must learn to be resilient to the changes you see, the deficits that suddenly appear, and just be thankful he is still with you, even though he is "different".  I would give anthing to have my beloved here with me...grouchy, weepy, sleeping...no matter.  Be brave sister and know that we are all here for you.  Much love.

In hope and solidarity,

Tracie Abbott Langley

http://www.caringbridge.org/visit/mellangley/journal

My dear husband Mel passed Monday, Aug 2, 2010.  The family is here, and he passed peacefully at the local hospice facility.  I am so numb and dumbfounded that it happened so quickly.  We were dx on Feb 16, and it was so hard on him.  The radiation and chemo seemed to do more harm than good, as he was so exhausted all the time.  I just don't understand.  I hate this disease.  Please pray for us.  Love to you all in your battle with this diease.  Much love, and God bless you all...

Tracie Abbott Langley

caringbridge.org /visit/mellangley

Sarah...you are so awesome..you told me you would not leave us...and you haven't...I hope you are okay...I am sure you are not...you are so much stronger than me...I  found the same websiite the other day...what a sad, but true site..I read it from beginning to end...My Mel is hanging in there.......but barely.  I miss your son Andy: I only knew  him through you......but what a wonderful soul...Love to you and your precious Andy........

All I can say at this point is my prayers are with you...and with those who have already lost their loved ones...May God bless you all and wrap His loving, healing arms around you...

Tracie L.

 

I am so happy for you all...God bless and prayers for continued improvement!

Tracie

Mel dx 2/6/10 gbm

oh sweetie...I knew exactly what you meant, and enjoyed the chuckle nonetheless...and yes, he does the "spliffs" as our dearly departed Andy M. would have called them...

Put my sweetheart to bed at 10:30, and at 11:45 heard movement sounds from the baby monitor; and by the time I got there, a HUGE crash, and found my husband wedged between the bed and the nightstand...he decided he had to pee, did not call for me, and ended up splitting his lip and scraping the holy crap out of his forearm...I am so thankful my brother in law is staying with us now; he should work in the ER instead of shoeing thoroughbred horses all day...

Mel's "shituation" to borrow another phrase from Andy M. and his Mom Sarah, is getting worse by the hour, not the months, as we so feared from the beginning of our journey.  It took three grown adults to get him from the den to the bedroom this evening, and he is talking some trash, and some nonsense, and I am totally unprepared for it to progress this fast.  Please say a prayer for him, as I will for you and yours...God bless...Tracie

 

Mel L's
Journal

  • Wednesday, May 19, 2010 11:36 PM, EDT

    Dearest friends and family,

    Today was not the best news we could get, nor the worst.  To sum it up, we are still in the wait and see mode. 

    The MRI showed edema, which we knew in our hearts was already a factor, and also showed some possible additional growth of the beast that is residing in my dear husband's brain. 
    Dr. Pittman was quite kind and understanding today, as he should be, and did offer one glimmer of hope from my perspective.  Since we did not do a full course of chemo during radiation due to Mel's low platelet count, we are hoping that the additional courses of chemo we are ready to begin will improve his status.    His platelet count is back into the normal range, a whopping 295 compared to the 65 to 80 range he was in after the seizures, so we are hopeful that continuing on with the Temodar will show some improvement.

    Tomorrow we will begin a 5 day course of 300 mgs per day of the Temodar, be off for 3 weeks and then repeat.   They also gave us a new prescription for a maintenance anti-biotic to prevent pneumonia, which apparently the chemo has a tendency to make him more susceptible to. 

    So, in a nutshell what we are doing is continuing on with the standard protocol for this disease, and hoping for some relief and success.

    As for my precious Mel, he is still struggling with the headaches, and now that he is back on the Decadron (steroids), his hiccups have returned with a vengeance!  In the beginning of this journey we were not sure what caused them, but being off of them for so long and then going back on them Sunday night, it is very obvious what is causing them.  Only Mel seems to have that reaction to them...the black cat strikes again!

    Mel is still struggling with the left side weakness, numbness in his legs, and now it seems that he is losing some peripheal vision as well.  This beast is a true bad ass, kick some butt and take some names kind of MF'er, but my Mel is trying his best to fight it on an hourly basis.   His attitude is still good, and we still have to laugh at some of the things he does...

    This evening Ben (our son) came over for dinner...Mel grilled some awesome fillet Mignon's, and we had crab legs as well...surf and turf has always been one of his favorites...and he actually ate more than he has in weeks!  Hallelujah!  I will blow our entire grocery budget if this is what he wants every night...just to see him eat some protein and take pleasure in it was so great to see. 

    We are still taking things one day, one hour, and one minute at a time and enjoying our time together.  I appreciate the phone calls and visits this week from his guy friends, it truly means the world to him and to me just to see him smile and laugh again!  Thanks...you all rock!

    Tomorrow Mel's Mom and Dad will return from Florida, and I am glad that they will be here to spend some time with their son.  He needs to see them as much as they need to see him.  I also benefit since I can leave the house without feeling guilty...

Thanks to you all for listening...And much love to you all who have supported Sarah on her journey with her beloved son Andy...you are all a godsend to me and others...

God bless you and yours...

Tracie

Mel dx 2/16/10 gbm

I am so sorry you have joined this little "club".  I feel like the membership grows daily...they just don't know what causes it...but I digress.

My beloved husband, age 57, was dx on 2/16/10.  His tumor was on the right front temporal lobe, and they removed a 7cm tumor.  We have now done 6 weeks radiation, plus 3 weeks Temodar (low platelet count prevented us from starting chemo earlier), and are getting the first reading of the last MRI done today to compare to the post-op MRI.  I am praying for a good outcome.

What I can tell you is this...the people on this site are truly loving, caring, awesome people.  We are not alone, as some of them who have already lost a loved one continue to post, and others are where you and I are...in the beginning of the journey.  Stay strong, rely on us, and don't hesitate to ask away...no question is too elementary, no emotion too strong, and no rants are ever discouraged.

My heart goes out to you...and I hope that perhaps I can be of some help to you as well.

God bless you and keep you strong,

Tracie A. L.

Lexington KY

CB: mellangley

My heart is aching for you Sarah...and for Heidi and all of your huge circle of family and friends...He is loved, and that is all any of us can ask for.  I wish for your beloved Andy a quick, painless, peaceful passing.  May God wrap his loving arms around all of you...Much love,

Tracie Abbott Langley

Lexington KY

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About melsgirl

Caregiver
Brain Cancer
Alternative Treatments, Cancer Nutrition, Cancer Treatments, Chemotherapy, Clinical Trials and Research, Conventional Treatments, Diet, Naturopathic Medicine, Radiation, Recipes, Side Effects, Supplements, Surgery, After Treatment

My beloved husband Mel was diagnosed with a Grade IV GBM on Feb. 16, 2010, and had a craniotomy on Feb 22, 2010. He is 57 years old, was an avid golfer, fisherman and outdoorsman. He is now 1 week out from chemo (Temodar) and radiation, and is having many issues such as low grade fever, no appetite, no taste sensation and he is cold all the time. I would appreciate any advice anyone can offer. Many thanks and God bless.. UPDATE>>>>We saw Mel's surgeon today, 5/5/10, and he wanted to put Mel back on the Decadron...I totally disagree...the steroids are what put him in his currenrt predicament...extreme weakness, loss of muscle mass, weight loss, and a general feeling of malaise...I wanted an appetite stimulant, but received a script for more of the same...needless to say, we did not refill the steroids...and the neurologist agreed with me...wish us luck as we try something else...Many thanks and God bless you all...

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