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Wife's been in the hospital

pagilman

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Ramenth, todays medical facilities can do wonders with this type of problem. Try to keep a positive attitude and your family will be in our prayers.
 

ramenth

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It's malignant, folks.

The pathology report is back from the University of Rochester and it's describing the tumor as either a germ cell tumor or a lymphoma.

We talked to our general practitioner on Wednesday, seeking advice on what questions we should be asking as we move forward. He's the one who gave us the news. Our neurosurgeon, on the other hand, is calling the pathology report "undiagnostic," meaning he's not satisfied with the outcome of it being a choice between the two and wants to know exactly which type we're dealing with.

So we walked out of the neurosurgeon's office yesterday with a referral to an oncologists so we can move forward with the advice and knowledge of a person who deals with cancer everyday.

The only thing we're sure about is that it's malignant, we're just unsure of which type it may be and the treatment for it. Either way we know it will involve radiation and/or possibly chemo.

Gotta say we're both scared s***less, folks, I just can't show it in front of Sarah. Now's the time to put my game face on and get her through this. Even if I have to put her on my shoulders and carry her.
 

DetMatt1

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I'll pray for the strength you need to get your family through this. I think we are all here for you brother!
 

ramenth

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My Supergirl

Looking a bit tired from a long day. She wanted to go out since she's been feeling chained in by the house and the doctors' offices. Figured it was good time to for a date night.

100MEDIA$IMAG0173.jpg

She asked for the Superman hat since Supergirl wears the same logo. Told her to keep that attitude going: bulletproof.

The hat helps her a bit with her self consciousness since her head was saved to put the shunts in and do the biopsy (the world's most expensive hair cut!), but she's feelin' a bit better since the bandages have come off.

Thought you folks like to see a face with all the prayers that have been given.

Thanks, guys, you don't know how much that all means to the both of us.

100MEDIA$IMAG0173.jpg
 

ramenth

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Switched hospitals, switched doctors

The last doc just wanted to keep an eye on the tumor for the next couple of months through CT scan since the pathology report gave him a choice as to what it may be.

So we went and saw an oncologist who referred us to a neuro-oncologist at Strong Memorial and the Wilmot Cancer Center in Rochester. About a two hour drive each way. The neuro-oncologist has ordered a round of tests under the strong suspicion it's a germ cell tumor (highest likely probability).

We've had to wait until the steroids are out of Sarah's system. The steroids put us in a Catch-22. Without 'em the swelling could have gotten to the point of being catastrophic. With 'em they may be masking what the tumor really is.

The 2nd we go up for a lumbar puncture. They want to sample the spinal fluid to see if the tumor might be shedding cells through the shunts back into the spine. We need to get there early for some blood work to be done, too. The 6th we go up for MRI's along the spine. If it's a germ cell, it may have left behind cysts as it migrated from the the ovaries to the brain. The 11th we go up for a consult on what the test results and film work shows. If the test results are undiagnostic then we may have to wait a few months and they may be forced to go back in. Not a good thing.

The shunts are doing their job, but Sarah has been getting some mild headaches more frequently. Since the tumor is located on her penial gland and attached to her thalamus her sleep cycle is thrown off a bit. The doc gave her a natural OTC remedy to help with that. She wears out easy, taking two or three naps a day at times. Can't take her far from home unless it's to see family, where she can have a bed to rest on if she tires out.

Gotta keep a close eye on her, too. Can't leave her alone for very long (maybe just to go outside and work in the gardens). Did it the other day, but my sister and her family was down for a spell and it gave me a chance to take a breather. Because of where the shunts are located she could get extreme headaches with vomiting. Back to the ER. Or she may just pass out. Back to the ER. Now that she's a patient of Strong, that means a helicopter ride from here local to Rochester if it happens. We have a neighbor who helps me keep an eye on her, but still would prefer to do it myself.

Trying to keep her spirits up. And trying to keep her from getting bored. A result of the shunts can be some serious moods. If she starts to get into a funk I gotta try to pull her out of it, quick, otherwise it could be while to get her out of it. She's been doing little things around the house, as the doc will allow, but she can't do her normal chores. No gardening, no house cleaning. She's been baking, doing some crafts, working on some puzzles, organizing the books in the library, but she still can't bend over, so I have to pick things up for her and do any heavy lifting.

I've been working around in the gardens. Just cultivated the entire veggie garden today. Been keeping up on the yard, been keeping the house clean, and generally trying not to get bored myself. And trying not to go to pieces myself, at times.
 

DetMatt1

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"We have a neighbor who helps me keep an eye on her, but still would prefer to do it myself."

I consider you a super heroe and I have no doubt that your wife and kids do too. Don't get overburdened by feeling like you have to do it all yourself. Take any help you can get, your family will not think any less of you. If you want to be the one that your wife sees taking care of her through this, that's understandable but with that in mind maybe you could redirect the neighboor and anyone else who wants to help to do it in some other ways. Remove some of your other burdens so that you can focus yours on her. You're in unfamiliar territory here and I don't know if there's anything I can do all the way from Detroit other then pray for your family but do let me know if there is anything I can do and I will try to be here for you.
You the man Ramanth, Keep it up!
 

MOPAR MIKE

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Wow sorry to here this will say a prayer for her . Some times even cars do not matter hang in there
 

AlleyoopMgv

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It's good to hear that Sarah is doing little things around the house to keep her busy. Stay strong Robert, God Bless.
 

shadango

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Havent been around lately here and just learning of this.

Prayers and good energy going out to you both.

Today's medicine and technology can work miracles (with a little of of God's help!). I have a friend who had a similar situation and they were able to get her squared away with some time.

Remember to take care of yourself through all this - easy to forget to do.

Hang in there and know we are all thinking of you both in our prayers.
 

ramenth

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Sarah and I had to be in Rochester on Monday, the 2nd. But here's the kicker: one of her neuro-oncologists originally had it set up to do it in the Wilmot Cancer Center. But after calling late Sunday afternoon, the doctor decided it was best to do at the actual hospital where they would have the full selection of needles.

Monday morning she called and canceled the 1:00 appointment and said she'd get a hold of us as to what day and time the new appointment would be. At 11:15am the hospital called and told us we needed to be there by 2:00. So, not ready to make the trip - being told it would be on a different day - we now have 15 minutes to get ready, get gas, and be on the road so we could be there for our 1:30 check in time. We pulled into the parking garage at 1:30.

Everything went well. The procedure was basically in and out, though Sarah came home with more restrictions than before for the next day or two. Our bathroom is on the second floor, along with all the bedrooms, so for the first 20 hours or so after the procedure she was stuck upstairs. No stair climbing!

Now she can move about the house, but still has to limit her stair climbing until at least Friday.

And speaking of Friday, Sarah was pretty excited. Her best friend growing up flew out from Minnesota for the weekend, along with her family. With the long day on Friday we didn't get back til late, but still early enough to have dinner. Saturday we went sight seeing around Watkins Glen, showed 'em some of the sights from my childhood, growing up in the hills 'round about.
 
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ramenth

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And another update. Friday we went to get the MRI's done. She was on the table for about 1/2 an hour when the MRI shut down.

Gotta reschedule for Monday or Tuesday, they say.

Got the phone call at 9:00 yesterday morning that the only time they had available was yesterday at 2:30. At least that gave us enough prep time to get out the door by noon to get there. (I'm a habitual early person for appointments, to allow us 1/2 hour to get through the parking garage, get to where we're going, get checked in, etc, etc.)

Hey, we're doing good. Things are on track and on schedule. Except we're still in the waiting room, her in her oh-so-fashionable hospital scrubs at quarter to four. No one has said a word to us about the wait, so I start asking questions. ER needed MRI's after a car accident victim came in. I'm fine with that, what I'm not fine with is that no one bothered to even stick his or her head out the door to tell us why the wait.

Four o'clock they finally get her in. An hour later she comes walking back out, for a break I'm told. Take an hour, get something to eat. Gives us time to get to the lab for the blood work, get her a sandwich, then back to the MRI. They hadn't even done the contrasts yet.

She's in there for another hour and fourty-five minutes before they're done. We finally left Rochester at 8pm. Figure the first hour or so on Friday, the almost three hours yesterday, she was in the MRI for about 3 1/2 hours all said and done.

With the four hour round trip and the six hours we were actually in the hospital yesterday was a ten hour day for us.

Tomorrow we go up for the test results and see if all the poking and prodding was worth it.
 

Ray

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Eileen and I are still praying for the two of you.
 
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