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Rainsong 04-27-2012 08:48 PM

The crisis you have to worry about most
is the one you don't see coming. Mike Mansfield

On March 27, my husband was found in the parking lot of our local Martin’s grocery by two health department employees suffering from a seizure. They immediately called an ambulance, then used his cell phone (which he was attempting to use when the seizure occurred) to hit “redial” and notified me.

At first the doctors weren't sure what was going on but they thought either a reaction to his meds (not likely since nothing has changed and there are no new meds) or he had a stroke.

His speech was garbled, he had difficulty using his left arm and he was
having seizures.

The only thing I knew for sure was we were both scared.

During the four hours I was at the hospital (came home to take care of Abby, our pup, and get a bite to eat while he had his CT scan since I could not accompany him), he did regain some use of his left arm and I was able to understand some of what he was saying. He also had regained his sense of humor--he asked me to bring Abby back to hospital with me.

The CAT scan came back negative for stroke, so they performed an MRI.

The MRI showed a 3/4" diameter tumor on the right parietal lobe. Full body X-rays show he has no other tumors in his body so this was considered a primary site. The neurosurgeon said the tumor was close to the surface and relatively small.

Surgery was on Monday, April 2, after which a section was sent to pathology to determine whether or not it is cancer. Hubby came through the surgery fine, except for an infection from his IV, but we won't know whether the tumor is malignant or benign for a few days yet.

He's still keeping his sense of humor, so that's good.

So far it doesn't look like any lasting damage to his brain or body functions. No sagging face muscles, no limitation on his limb movements. Still, I felt like I had been holding my breath for over a week.

April 10
At the neurosurgeon appointment the staples were removed. Then the doctor dropped the bomb that sucked all the air out of the room. My husband has been diagnosed with glioblastoma multiforme, an aggressive brain cancer--the same kind that killed Teddy Kennedy. Prognosis is not good but we are not giving up hope. There are some people who have survived 10 or more years with this type of cancer. Most die within two years and many in a lot less time. While the neurosurgeon was able to remove all of the body of the tumor, glioblastoma has microscopic tendrils which are impossible to surgically remove as to do so would cause more damage to the brain. Neither radiation or chemo are very effective but sometimes they do work for this type of cancer.

Radiation oncology appointment is set for April 23. This had to be postponed as my husband suffered another seizure the same day and was sedated at time of appointment. He had a few short seizures over the weekend culminating in the wallapalooza on Monday.

We did get to see the radiation oncologist on Wednesday (25th). He is coordinating with the oncologist at the VA in our area so the treatments will be covered by the VA. Since the treatments have to be given on a daily basis and the nearest VA hospital is over 70 miles away, there is no way we can do the trip each day.

And, because of the IV meds on Monday, his arm became infected (for the second time) which meant we ended up at the local VA clinic for antibiotics. The radiation oncologist also gave him an additional med to take when he felt a seizure coming, one that works faster than the regular anti-seizure meds he was prescribed after surgery. His neurologist also increased the dosage for the anti-seizure meds so hopefully those will be under control.

We've had our wills, Power of Attorney and Advance Directives drawn up and now have to make an appointment to have them signed and recorded.

Monday (April 30) we go to see his neurologist and on Wednesday, we have to make a trip to the VA hospital so their doctor can give the okay for all additional treatments can be performed locally.


jmscoping 04-27-2012 09:39 PM

hugs and love.
hugs and love.

EHeeger 04-27-2012 09:42 PM

Oh Rainsong, I'm so sorry to hear this. I'll keep you both in my thoughts and prayers.

Samantha 04-28-2012 09:50 AM

I think and hope for Butch and you every day. It makes me sick to my stomach that this has happened and all the DR appts etc. that Butch will be going thru. I am so very sorry. Take this day by day and don't listen to any nay sayers who have gloomy stories. Do listen to the DRs who are the specialists.

I wish I lived close to you so I could give you a big hug and let you cry and at times laugh. This is like a bad dream that won't go away. Be sure to take care of yourself as caregivers tend to neglect themselves while lovingly helping their loved one.

Remember, you can call me at any time.
Love you,
Sammie and Mark

roxy64 04-28-2012 02:40 PM

Sending prayers and hugs!

duranfan 04-28-2012 03:10 PM

So sorry to hear this, Rainsong. I will keep you and your husband in my prayers. I agree with Sammie- take it one day at a time, and be sure to take care of yourself, too!

duranfan 04-28-2012 03:10 PM

And please keep us posted!

jenguin 04-28-2012 03:32 PM

I'm sorry to hear the news but know that you will fight this with all of your intelligence, wit, humor and strength! It sounds good that it was small. Don't be afraid to seek alternative/nutrition therapy in addition to the chemo/radiation. Being healthy will certainly help his body fight this sucker!

Hang in there!

Rainy Day Stamper 04-29-2012 10:08 PM

Rainsong, I am so sorry to read this. You and your husband will be in my prayers. Yes, take care of yourself too.

Kittypaws 04-30-2012 04:38 AM

Oh, I am so sorry. Best wishes for the future. I will hold you in my thoughts.

Englishrose 04-30-2012 06:42 AM

Thinking about you both today, Rainsong.

stampinbb 04-30-2012 11:17 AM

You know you and Mr. RS are constantly in my, DH's and the children's thoughts.

sewsplendidstamper 04-30-2012 11:35 AM

RS thanks for starting this thread. It gives me a place to come and focus my thoughts to you and Mr RS. Love you guys.

Illinois Marge 04-30-2012 12:47 PM

RS, my heart goes out to you and your DH. Hope today's neurologist appointment went as well as possible.

buggainok 04-30-2012 05:58 PM

RS, so sorry to hear of this. I'm sending all positive thoughts your way.

maryrose 04-30-2012 06:24 PM

So sorry to hear that your family is going through this difficult time.

Laurie FW 04-30-2012 11:06 PM

OH NO, say it isn't so! I am so sad about you and your sweet hubby having to go through all of this, it STINKS!

Thanks for letting us all know, I am sending healing and positive, encouraging thoughts and wishes your way.

I sure wish I lived closer to you, too so I could bring a meal or something over, or help with the dogs...

If you ever get a chance, would you pm me your address if a card would cheer you up? Or maybe a care package?

Thinking of you with love and affection, Rainsong and your special DH!

stampforariethan 05-01-2012 05:07 AM

You and your husband are in my prayers!

Samantha 05-01-2012 07:21 AM

Just a reminder that you and Butch are in my healing thoughts every single day. I know it is so very hard for you both and I wish I could do something..anything.

Just know that you have a lot of friends hoping for the best.

Love you.

Granny Hawkins 05-01-2012 07:58 AM

I sent you a PM.

jukie 05-01-2012 08:15 AM

Rainsong, I am so sorry to read your news, and I am sending you and Mr RS all my healing thoughts and prayers. Remember to look after yourself at this time, as Mr RS is going to need you. xxx

Breezy929 05-01-2012 01:47 PM

I am so sorry to read this! Sending lots of good thoughts your way.

SophieLaFontaine 05-01-2012 03:50 PM

Hugs and love to you and your husband. What awful, awful news. Best wishes for the upcoming appointment.

Rainsong 05-01-2012 07:53 PM

Thank you all for your warm, kind thoughts, prayers and wishes.

As you can imagine, this last month has been an emotional roller-coaster and I don't anticipate it will level out any time soon.

Monday we saw the neurologist. In a week, Dh is to increase his dosage of Keppra to try to keep seizures under control. So far the Valium prescribed by the radiologist oncologist seems to be working, though Dh has had several mild seizures since we had the R/O visit. Each successive seizure seems to cause a bit more nerve damage. Dh has a difficult time feeling food on his bottom lip on the left and the left side of his mouth seems to be slightly lower than the right. He's also had some difficulty with feeling in his left hand, arm and leg but is able to function pretty well.

Even the very mild seizures interfere with his ability to talk. Several minutes--maybe half an hour--have to pass before he can speak clearly again. All the stress from the seizures causes a great deal of fatigue for dh. Sometimes he needs a nap and other times if he just rests he's "okay" again.

Tomorrow (Wed.) we go to the VA hospital to see their oncologist so we can have the radiation/chemo done here. The R/O also mentioned the VA might cover the costs of the emergency room and hospital stay since it was an emergency as no one should have to travel over 50 miles to get to the VA hospital.

I'm not holding my breath.

Gotta go check on Sammie's thread for an update on she and Mark.

Hugs back to everyone!


Stampin Wrose 05-01-2012 08:09 PM

Thanks lots for the update, Rainsong. Lots of hugs to you both.

Rainy Day Stamper 05-01-2012 10:27 PM

Rainsong, I have been checking back on you and was just thankful to hear from you again. My heart breaks for you and your husband. Praying everyday for you both.
Wish I could do more.

Carole4312 05-02-2012 03:31 AM

Thinking of your both xxxxxxx

sillyfilly 05-02-2012 04:54 AM

Oh I am so sorry your husband is facing this and sorry for you too. Thoughts and prayers for you all.

SophieLaFontaine 05-02-2012 06:39 AM

Wishing you the best possible outcome today at the VA. Hugs.

victorial 05-02-2012 07:45 AM

Sending hugs and well wishes. I have an Abby too.

Samantha 05-03-2012 02:14 PM

Thanks for the update RS. This is a living hell you both are going through. You go to bed with cancer on your mind and the first thing you think about when you wake up is cancer. I don't like to use the word "hate", but I HATE cancer and what it does to people.

I hope your ER visits are covered as you are right that you shouldn't have to drive 50 miles in an emergency. How did the appt go on Wed with the oncologist? Do you like and trust him/her? This is very important. I hope you can feel the love that everyone here is giving you and know that we all are hoping, praying and wishing the best outcome for Butch.

The stress of cancer takes a toll on the family too. So try and take care of yourself. Everything changes and nothing will ever be the same again. But maybe he will be one of the cancer survivors. Don't give up hope and keep up the fight.

Please keep us informed as you can as we care about you and Butch and all of your family.
Love you.

muddy otter 05-03-2012 04:25 PM

Oh Rainsong. All the love, hope, prayers and warmth in the world to both of you.

Please know how much you're both in my heart, always.

Novell 05-03-2012 04:37 PM

I can't even begin to express how sorry I am to read about this. I wish you and your husband all the best as you struggle to digest all that is happening and figure things out as you go.

Rainsong 05-04-2012 01:01 PM

What we discovered is that back in 1999, Congress passed a bill (the Millennium Bill) that, in part, covers costs for veterans receiving their main health care at VA hospitals/clinics at non-VA hospitals.

There are some qualifiers, such as coverage until patient is stabilized and can be transferred to a VA hospital. Not sure how this is going to work for us, but our local hospital knew dh is a vet and made no mention of this bill or applicability to his case, nor did they mention transferring him to a VA hospital.

As for the radiation, the VA oncologist can recommend it be done locally and this used to be a given. The rules have changed on this but it is still possible the VA can rule this is okay. Otherwise, dh will probably end up down in D.C. for the six week treatment. Regardless, the VA will cover the costs of the chemo drugs necessary.

Still jumping through hoops. Had to pick up the pathology report/slides to take back to Martinsburg next week.

As for the actual trip--nightmare for me. My car is scheduled to have work done on the rear idler arms and a couple other things on Monday. Dh did not feel safe to take it out of town, so our youngest drove us. Her car is small, two-door and the backseat is even smaller. Since dh is 6'2", I sat in the back. Sardine can. With a lock bar across my chest. Stupid seat belt kept tightening up any time I moved. I ended up riding the last leg home without a seat belt.

We stopped at Cracker Barrel after the appointment for lunch. Dh had a mild seizure immediately after we were served. Fortunately the Valium kicked in fairly fast (within a minute) but they are so disorienting for him that it took a while before he felt safe to eat. His seizures are focal seizures, limited to facial muscles and speech. Usually for half hour or so after one, his speech is slurred and difficult to understand.

By the time we got home, he was thoroughly exhausted and I wasn't in much better shape. Being bent like a pretzel for nearly two hours made for an excruciatingly slow exit from the car and the feeling didn't return to my legs for an hour.

Hopefully my car will be back on the road by next Thursday.

Once again, thank you all for your love, hugs and warm wishes. They truly are a huge help.

And Sammie, we haven't met a doctor yet that we have not felt they were concerned, knowledgeable and up-to-date. And our local hospital is pretty much state-of-the-art as it is only three-years-old.


muddy otter 05-05-2012 07:29 PM

Big hugs to you and DH. I hope that they can control the seizures that that the radiation helps.

Given how much love can make a difference, I know that your DH has the most powerful arsenal imaginable on his side in the fight.

Granny Hawkins 05-07-2012 01:48 PM

Just popping in for an update. XOXOXOXOXO

Rainy Day Stamper 05-07-2012 09:28 PM

Just checking in too. I do everyday and haven't stopped praying for a miracle.

Rainsong 05-08-2012 07:23 AM

Dh has had a few mild seizures over the intervening time, but starting yesterday he increased his dose of Keppra, as per doctor's orders. May take a few days for it to work. We have a way to go before we reach maximum daily dosage, so it may have to be increased again or another med added to the mix.

In all the time we've been married, the one thing sure to set my husband off is biting the inside of his mouth or lip while chewing. The seizures are focused in his facial muscles and during the initial seizure, they caused him to bite his tongue and the inside of his cheek. These smaller seizures are doing the same thing but to a lesser extent. With little relief from them, his mouth has been very sore and the inner tissue swollen, making it much more prone to be bitten. This makes for an anxious and frustrating situation, especially as mealtime approaches.

In my first post to this thread I failed to mention my bil. I had called my oldest sister the night my husband went into the hospital to let her know what was going on and when surgery would be. She responded that she didn't want to tell me but she had to so I would know why she and her husband wouldn't be there for us--her husband had just been diagnosed with colon cancer and would have surgery two days after my husband's.

Before my bil could have his surgery, he developed a painful right leg and could not put weight upon it. Several days passed, and surgery was postponed, before doctors could find the problem. Bil ended up having an angioplasty on his leg and his colon surgery was pushed back to May 2.

In an email last night, my sister let me know he is now home! They are still waiting to hear on the lymph node biopsy. I'm hopeful it will be good news.

My bil has been a member of our family since 1962 when he and my sister started dating. That was the year my sister contracted rheumatic fever and nearly died. She was in the hospital for weeks and he would run his paper route, then walk all the way across town to visit her in the hospital. They've been married for 45 years and faced a lot of challenges, both physical (bil's open heart surgery two years ago) and geographical (job relocation 3000 miles away from all family).

Not much else to update except we go back to Martinsburg on Thursday, this time in my own car, thank goodness. While I love my youngest daughter and appreciate her taking us last time, her back seat was a torture chamber for this old lady.

Thank you all for caring so much. Now go give your hubby, SO or favorite dog/cat/guinea pig a big hug.


PH in VA 05-08-2012 07:36 AM

Rainsong, thank you for the continuing updates. You and your husband have been in my thoughts. I hope the medications do their job to control the seizures.

Thanks too for letting us know the latest on your BIL.

Many many {HUGS} to you and your family.

Rainy Day Stamper 05-08-2012 08:22 AM

Rainsong, your family is going through so much. I am so sorry to read all this. Your last line made me choke up. I will hug and hug those I love today, including my puppy.

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