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Brain Surgery and Home in 3 Days

lovingwifedeb's picture
lovingwifedeb
Posts: 184
Joined: Aug 2010

Husband, Bob has pulled through his 3 hour surgery with the least effects, staples, swelling, pain and mixed up words. His balance, coordination, touch, recognition, etc. all in tack. The doctors were correct that as the swelling in his brain goes down the mixed up words get less as time goes on. My husband was able to leave the hospital in 3 days. Now I just have to keep him off his beloved Harley for awhile...

Bob will have to do the gamma knife in a couple of weeks to "clean up" the edges of the tumor area and cells that were left behind so his neurosurgeon told us. I watched a video last night so I would know what he would be facing... didn't look fun but better that WBRT. After that his ONC will probably meet with Bob and discuss his future plans. Since Bob was totally on a nutritionally based program because of lack of options at stage 3c 6 months ago, now at stage 4 he will qualify for other programs maybe? We just don't know yet what his final diagnosis is until after gamma knife is completed and his next doctor's appointment is done. We will let you know...

As far as family goes I think we are all on the same page now. I think there is a balance of giving and receiving hope and understanding the reality of the things that may lie in our future. Bob's oldest daughter was thinking of getting married in summer of 2012 and now she is rethinking her dates. I told her it was a wise decision. I have a daughter who thinks of Bob as her own father, they are very close. How many step fathers have a gift like that? Bob's youngest girl (25) is disabled and she is the hardest one to make understand what is happening. She will be lost most of all. But at least we, as a family are talking about the reality of what's happening with Bob, the facts are now in the open. This happened in 3 hours of waiting in a room under stress, talking of what it's been like for the last 6 months living with melanoma. This information can not be soft pedaled anymore. It's not in the closest anymore, hidden like a dark secret kept away from the light of day. Part was Bob's fault but part was everyone's denial of what was really happening. Yes, we take one day at a time but our future is changing now, evolving because of this damn disease. Love binds us together as family and Bob is it's key but the fear of losing him should remind us to live more fully in the now.

Brain surgery was terrifying but we made it...
one day at a time.

Deb
lovingwife to Bob, stage 4

Kellie_T
Posts: 19
Joined: Dec 2010

Deb,

I've been following your posts and am hopeful for your husband. I too was diagnosed stage 3. I went through a radical groing dissection in October (18 nodes removed) and am almost complete with 30 radiation treatments. My aunt told me months ago that you emotionally can't live on the island of cancer alone. I have had my family and friends well informed and by my side along the way. It's been really rough for my husband who wants to be able to "fix" everything but can't fix this. He too is scared as well as our four grown children. We live each day as it comes. We don't squabble about the small things anymore. Personally, I'm trying to think of ways to raise awareness to others of this horrible disease.

lovingwifedeb's picture
lovingwifedeb
Posts: 184
Joined: Aug 2010

It's a tough job being a caregiver and being scared comes with the territory. Guys aren't much for sharing "feelings", I have a hard time getting my husband into these discussion boards, sharing fears. I poke and prod and send him information that I find. Got him signed up on the www.melanoma.org site, I think it's the "hen-peck typing" that frustrates him most but once in awhile he jumps in. My husband and you share the same experience in his first surgery 6 months ago, right upper leg/groin tumor (melanoma) removal along with 18 lymph nodes (tested negative). His drain ended up getting infected and had to have second surgery to get everything cleaned up again. What a mess and a big scar to prove it.

We all need to talk about "it". I do know that family is sometimes too close to understand what we are going through. They just want everything to be "OK". Chances are it's not going to be "OK" in the long run and there are few that want to really understand it. I have yet to find my balance, my acceptance in all of this. To have hope and yet spend the week before brain surgery gathering all our papers for the "just-in-case-he-doesn't-wake-up"... it's a roller coaster life I'm talking about. One minute we are hoping for our future and the next we are planning for the grave.

Sorry... that got dark, my apologies.

The more I learn about melanoma the more I get angry about the clinical trials and how they are ran, their limitations and rules. The drug companies are in it for the money and we should never forget about it. I compare it to my experience when I get migraines and have had to deal with with the insurance companies about the cost of no generics of a drug that I am taking or the bit about orphan drugs.

Anyway... it's been a rough week at home and now I am back to work. More stress...

Peace to you and your family.

Deb
lovingwife to Bob, melanoma stage 4

Kellie_T
Posts: 19
Joined: Dec 2010

Deb,

I totally agree. They want the best genetic match for their protocol to prove to FDA it works. Forget about saving lives it's about the all mighty dollar. My recent run-in has been with my docs. I'm almost finished with radiation (one week to go) and have attempted to schedule my PET and have inquired why they did not order a brain MRI. I was told by the surgical oncologist that he will look at the results of the PET and if anything shows up he'll order the brain MRI. I told his nurse this is unacceptable. If we're going to check all of me than we need to check all of me at the same time. I'm also getting conflicting information on when to get the scans completed. One doc says now (while I'm still in radiation) and another suggests waiting two weeks post-radiation. It's very frustrating regarding the differring opinions regarding my care. I'm supposed to be receiving care from a premier treatment cancer center (Moffitt in Tampa). Sure doesn't feel like it.

lovingwifedeb's picture
lovingwifedeb
Posts: 184
Joined: Aug 2010

I am not the best source of information for your needs. I find that everyone who has a diagnosis also has a different story to tell. I am guessing the best we can all hope for is to find a doctor we can totally trust and just go for it without regrets and just don't look back. If you start second guessing yourself or listening to other people who don't understand your history then you will just worry yourself to death (so to speak). I told my husband that he just needed to find a ONC he felt totally comfortable with who had experience with melanoma and its treatments. He is the best in "our" area and that is the important thing to us. We have to trust him from now on. My husband is only 6 months and 2 tumors into this. Compared to some stories we are just babies. What is protocol anyway?

Today my husband has his appointment set up for the Gamma Knife next Tuesday. As his caregiver I am very worried but this is what we have to do. My husband does not want the WBRT - Whole Brain Radiation Therapy... his decision, I agree. This doctor (different doctor) told my husband the melanoma likes to go to the brain... so I'm thinking why isn't the brain scanned more often? Why aren't people of melanoma diagnosis scanned from head to toe more often? My husband's tumor wasn't there 6 months ago. I understand the PET scans use radiated dye so there is a valid health threat for the patient. The insurance companies are not always looking out for the interest for the patient though.

What do I know? I am just his wife.

I don't have a doctor's degree.
Someone needs to stand up and be vocal about what's going on.

Mad? You bet I am.

This doctor told my husband his brain will be CT scanned every other month after the Gamma Knife is done. This will continue until either they are happy it stays quiet or if it grows again it will need more attention. He is scheduled for his next physical in March. My hair will be white before my time.

Just know you are not alone in this battle. The PET scan did see my husband's tumor in his brain. So, as long as the scan was a total body scan you should be taken care of. My husband's MRI was not ordered until they saw the tumor from the PET scan and wanted another look.

Breathe.

I am learning to live day to day. It's hard to not look forward anymore. I am another year older today but I am thinking not another year wiser. I look at my husband and wonder just how much life I can cram into seconds, minutes, weeks when I thought I had years with him.

Peace to you.
Deb
lovingwife to Bob, melanoma stage 4

Kellie_T
Posts: 19
Joined: Dec 2010

Deb,

If you don't mind me asking, did Bob have any symptoms at all? I finished radiation last week and my follow-up PET is scheduled for Thursday. Of course we are on the edge of our seats hoping this disease is under control. We're scared and can't get around that. I was able to get back to work about three weeks ago so that does help in the sanity department. I never thought I would say work helps keep me sane. Along the way I've met another person battling this disease. He's a dentist who works in the same building as my Primary Care doc. He intoduced us. He has reoccurent Melanoma. A lesion removed off of his neck 5 years ago and reappeard in his sinus cavity. It was too close to his brain and spine so of three surgeons contacted including Shands Melanoma Center they told him there was nothing they could do (inoperable). He went through radiation and IL-2 therapy at Mayo. Although the tumor is still there it did shrink. They are monitoring him now to see if it gets any larger. He lives each day as it comes and finally got back to work.
My husband and I are getting ready to celebrate our 19th wedding anniversay on February 14th. I was reluctant to go anywhere pending this weeks outcome but he wouldn't hear of it. He said he wouldn't wait on what might be. I tend to agree with him. I'm learning as we go through this to celebrate everything no matter how small.
Kellie

lovingwifedeb's picture
lovingwifedeb
Posts: 184
Joined: Aug 2010

February and Love... I hope you have a great anniversary! 19 years and counting... Valentine's Day? Good for you! How romantic... I think your husband is right about celebrating in the now. I know how hard it is for you and for him.

First of all Bob's symptoms... his speech. Bob kept turning words around in sentences or letters around in words. Or he just get stuck on a word. By the time his PET scan was due they found the tumor, there was no pain involved.

Bob just finished Gamma Knife on Tuesday, Feb. 1st. - day from Hell - in my book. 1/2 hour was the plan... after the scan the doctor said the tumor left over from the surgery in January started to regrow again. Soooooo... the doctor decided he would be aggressive and treated Bob to 2 hours of radiation. I didn't do so well... I fell apart after everyone left the room to take Bob to treatment. I haven't done that since first diagnosis in summer. I've been handling things pretty good up until now. I guess a person can only take so much.

Bob was pretty sick after, druggy... his words were turned around again so I was worried that he had lost some ground. But after a few days he got better and he is back to work again after being off since January 12th and brain surgery.

Bob will be retested on March 7th - should find out if radiation worked or not. We are going to the beach on the weekend of the 19th. We are on the Pacific side so it is still very cold... but it will be nice to get away and clear our heads before dealing with reality again.

Peace to you and your family.

Deb
lovingwife to Bob, stage 4

Kellie_T
Posts: 19
Joined: Dec 2010

I had my first follow-up PET scan on Thursday. We are all excited (yet guarded) since the PET came back clean. I'm starting a clinical trial in a few weeks. Lord knows I can't pronounce the darned thing. The medical oncologist wasn't very fond of Interferon so I'm giving the Phase I trial a go. I'm 44 years old and need to fight this with everything I've got.

I hope Bob is doing well and getting better each day. We have learned to be grateful for each day we have with each other.

All the Best,
Kellie

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