Released from care 5 yrs after surgery

[lori67]

Oh Marg - that sounds like so much for one family to deal with all at once. 

Stay strong and know that you and your family are in our prayers.  I hope for good outcomes for everyone.

Lori

[leapyrtwins]

Marg -

as K and Lori said you are going through so much it's only natural to feel overwhelmed.  Sometimes when it rains it pours    My heart goes out to you and your family members.

Thank you for reaching out to us and please feel free to keep reaching out.  We are all here for you.

I hope that your MRI next week shows very positive results.  I also hope that the other situations your family is trying to cope with show improvement.

Keeping you, and yours, in my prayers. 

Please stay in touch.

God Bless,

Jan

 

[Gloriann]

Marg

I am so sorry to hear about all the bad news coming at you all at once in your family. I wish I could say something to make you feel better. As long as you are concerned for others in your family, it will get your mind off your own worries for awhile. I tend to worry a lot about things, then have to remind myself to have faith and hope that God can get me through this. I love the scripture verse that says "He does not give us more than we can handle".

I pray that you get some good news from somewhere this coming week. You certainly deserve it!

I know this is going to sound strange, but I am going to see the surgeon in a few weeks, the one who released me. I am bringing copies of my last 2 MRI's. I never thought I would be going back there, but after talking to the other surgeon (ear doctor) who operated on me, I feel like this is the right thing to do. He did not tell me to go back to the other surgeon, but it came up in our conversation and it was my idea. It's a long story of how that happened and I won't go into it, but I would like to think this was the Lord leading me. The ear surgeon, soneone who has given me good advice in the past, is someone I trust. He was giving me several things to think about for the future, options that I have with this recurrent tumor.

I am really confused right now and want to hear what the doctor has to say about that who operated on me in the first place. He only made me mad one time. He has done more good for me than bad. Maybe after I see him again in person things will be alright.  He did write me a letter 2 years ago after our phone conversation (about the different opinions on the MRI) and he had looked over all my MRI's again. He said this "could be" a tumor and recommended my getting more MRI's at that time, not neccesarily seeing him, but I guess that is what he meant. I already had an appointment to see someone else by the time the letter came (6 weeks after the phone call) and I wanted another opinion anyway.

I hope my "story" is not too confusing. I know that I am telling how things happened in "bits and pieces here". Maybve I should start a new post and call it "my AN story".

Thanks for all who are reading this. I love this "support group"!

Gloria

[leapyrtwins]

Gloria -

I understand why you are going back to see the doctor who released you.  It's the kind of thing I would do.

IMO before you can truly move on in this situation you need to have closure with this doctor for your own peace of mind.  I think it will also be a good thing for the doctor to understand your concern and have a chance to explain to you why he chose to release you.  Doctors aren't Gods, they are as fallable as the rest of us and even though they have gone through many years of education, it is my feeling that they still can - and do - learn from patients.  Perhaps by talking with you this doctor will learn something that will help another patient somewhere down the line.

Good luck with your appointment; I'd be very interested to see how it goes.  Please keep us posted.

Jan

[marg]

Thank you all for your kind words and support.  I really have greatly needed my AN family these last few days. 

I'm sure things will work out - just hard when tough things all seem to come at once.  After I put the last e-mail in the other day, I got a call from the assisted place where my mother-in-law lives.  They had to send her to the hospital .  Then the Hospital released her yesterday afternoon.... but then we had a call and they sent  her back in again last night.   We now need to make some changes in her care (she has been in assisted for the last 2years) .  She lives here in town and we have been taking care of her needs for a long time.  These decisions for her need to be in place tomorrow morning before they can release her -  
     Gloria - you're right.... I don't have much time to think about 'my personal stuff'.... too busy with other urgent matters  .  I know that God is still in control  and knows what is going on .  I'm just very thankful that school is out for the summer and I don't have to meet the needs of my 27   2nd graders in the middle of all this other stuff.  I know that there is light at the end of the tunnel.....but where the heck is the end of the tunnel        I keep looking for it  - ok who swiped it? 
marg

[Gloriann]

Marge,
That tunnel does seem to be awfully long sometimes, doesn't it?
Not too long after I had the MRI done two years ago and found out about the recurrent tumor, my daughter-in-law died suddenley at the age of 32, leaving my son with 2 young children to raise, so I put my tumor completely out of my mind, until it was time for the next MRI to be done (which was in march of this year).

Leapyrtwins
Thank you for understanding about the situation with my doctor. One thing I realized was that when I took that last MRI to him 2 yrs ago I did not have the report with me and the only thing he had to look at was a computer disk of it, not the actual films, so maybe that is why he could not see anything. I looked at the computer disk at home and can't find the tumor either, but the radiologist had me come into the hospital one day and showed it to me on his large screen.
The thing I don't understand about my doctor is that he did receive the MRI report in the mail after I left his office, but because he did not agree with it, he did not call me about it. All he had to do was give me a call and say to have another MRI done in a year or two, just to make sure. In other words, if I had not gotten my own copy of that report,  I would still not know that the tumor was back and I guess I never would know, not unless it got large again and I began to have the symptoms that I had before the surgery.
My appointment is not for another 3 weeks, but I will certainly try ton remember to come back to this message and post about my visit. I may make anew message about the visit, since I have mentioned this on several of the posts I started recently.

[claire1]

Hi Marg

Anyone would feel overwhelmed with everything your family is trying to cope with.  Please know that your AN family here are all praying for you all and to have the strength to reach out any time to talk or cry or whatever you need to to stay strong.
You are stronger than you think.
Take Care
Claire

[marg]

Thanks Claire and Marge.... I so appreciate prayer.  Today I met with Hospice about my mother-in-law.  We will need to find a adult foster care home for her until she needs Hospice itself...then got a call an hour ago from the Assisted place she lives ...that 'mom' had fallen 2 more times tonight.  Right now I have a Hospice nurse over there making an assessment of the siuation - she may move to Hospice tonight until we can find a Adult foster home for her.  Had my MRI today - I am beat !  I'll be glad when the nurse calls so I can go to bed. 
marg

[claire1]

Hi Marg

You certainly have your hands full.  YOU need to take care of youself and let the hospice nurses take charge of your mother-in-law at this point. It will be draining on you just to visit and take care of incidental things ( BTW- just as important) When the time comes,and it will, you'll need that strength to be ready along side of hospice and/or the adult care center.
Make sure you eat well and get as much rest as possible. Yoga or tai-chi may also help the stress of the mind. Stay in touch
Take Care
Claire

[Kathleen_Mc]

Kathleen

How was your second surgery compared to the first one?

Gloriann: surgery for the regrowth was as my doctor predicted "a walk in the park", I had lost all there was to loose the first time around (hearing, facial nerve functioning, balance and all that) and the first surgery was like 16 hours long and the regrowth surgery was like 4....first time life support for a couple of days, second talking and alert the same day.

Easily put....first time was like being hit by a MAC truck several times, second like being hit by a pick up once!

[marg]

Hi,  
        I  just wanted to give a quick update for those of you who have been praying for my family.  My niece (with leukemia) just finished her 1st week of in hospital stay for chemo.   She is having a rough time - but many many people are helping her little family .  My cousin with 3 brain tumors I have not heard anything about lately (and have not had time to call about because this week my 90 year old mother-in-law who lives in my town ended up in the hospital 2 times, then fell twice, went to Hospice until we could go find an adult family care center for her instead of the assisted living place she has been in for the last couple of years .  We also had to go through and move all of her things out of the assisted apartment..... by yesterday).  My mother (who broke her neck 8 weeks ago and just got into an assisted apartment with my dad) fell again Friday ....and my dad's dementia is getting much worse.  They are so unhappy in Lacy, WA that I am going to go up to Tacoma in a couple of weeks to help my sisters find an assisted apartment for them there - closer to family and friends.  Then help move them.
     I know this sounds  like a badly written book that no one would believe - but it is all too true .    I am just grateful that it is summer vacation and I am not teaching right now.  I do not have the physical stamina I had before surgery (and I'm older too lol).  Trying to pack, and move boxes and furniture is much slower with only 1 balance nerve (most of you know what I mean)... and I have had some close calls with falling - but I didn't and that's what counts.
     Thanks for all the prayers.  I have high hopes that things will get better and slow down before the summer ends and I will actually get the rest I promised myself during this first teaching year after surgery.  I did fit in my MRI last week - was tempted to cancel it (after all I didn't really want another one anyway lol) but got it over with and now just have to see the doctor in a couple of weeks.  
     Since having the AN diagnosis, long decision and waiting process,  surgery  and then recovery I have tried to learn to take one day at a time and find some good things in each day.  That process helps me make it through the big 'mountains' in my life which seem to be the Rocky Mountains right now.   Sometimes it sure is overwhelming though.  Again, thanks for all the support and prayers.............I appreciate all of you.
marg

[lori67]

Marg -

I just don't know how you do it.  This is so much all at once.  I know it's hard, but try to take some time for you!  You need to get some rest if you plan on being helpful to everyone else. 

Maybe you can sit down with the involved family members and come up with a plan to divide the work so you aren't doing so much.  I know I've found that people are more than happy to pitch in, but sometimes they don't know what to do to help.  Just ask - I'm sure you'll find some good helpers out there.

I hope this gets better soon. 

Lori

[Jim Scott]

Marg:

I'm pleased to learn that you conquered your anxiety over another MRI and I trust the news was positive.

Dealing with aging parents and in-laws can be very stressful, as you've demonstrated, because you want to do whats best for them but there are always obstacles.  Sometimes the folks themselves are the obstacle.  The other relatives with life-threatening illnesses are another situation that can be simultaneously poignant and angst-inducing.  Again, you just want to do the right thing for everyone - but find you have physical and physiological limitations that have to be recognized and respected.  Marg, as much as you might wish to, you simply cannot be everything to everybody.  I hope you'll employ the adage you referenced - to take it 'one day at a time'.

Know that our thoughts and prayers for you will definitely continue.  I think you're doing a remarkable job under very trying circumstances - but don't allow the circumstances to overwhelm you.   As Lori suggested, try to enlist other family members to help.  Don't feel completely responsible for everything, all the time, because if you're not healthy, physically and emotionally, you won't be of much help to others.  Now, please, take a break. 

Jim      

[marg]

Lori and Jim,
Thanks so much for the support.  I have had some help with my mother-in-law thing... her daugher came and stayed with us for 3 nights as we sorted through "stuff" at her mom's , looked for a nice adult home for mom and was here the day we moved the furniture (along with my husband, daughter, brother-in-law-, and 2 nephews) so there was some help.  The main stress was that there were so many things to be done in such a short period of time and with no breaks for rest.  I took time today for a massage and I am going to go to a acupunturist (sp) next week to see if she can help me with some of the problems with my facial paralysis and tinnitus (who knows, it's worth a try - and anyway it is supposted to help with stress).   My mother-in-law is settling down in the adult home .... and seems happy there and has enjoyed all the attention- which also makes my stress level less .
      I also found out from my sister that there may be an opening at an assisted living place in Tacoma in a couple of weeks -which means that I don't have to go up there and look at everything available in Tacoma.  So it might just be moving my parents.  I'm really glad because there is still a bunch of stuff to take care of here in connection to my mother-in-law (my husband and I are the only family in town.... which is why we do more ). 
      I got my appointment to see my neurosurgeon moved up to tomorrow and will see him then.  I already read the report on the MRI (I got a copy for myself) ... and it seems there is a difference on the side I had surgery on ... but they couldn't identify wheather it is  scar tissue - or remains of the AN.  I'll ask my Dr. tomorrow and see what he says - but this report is saying the same as the one I had 6 months after surgery..... and the dr.  told me the AN was 'gone' then - I'll see what he says this time. 

     I know that I can't meet all the needs and I have been asking for help more ..... and trying to put limits on what I can reasonably do (emergencies tend to run over all bounderies though don't they).  I think the rest of the things I need to do can be done in a less immediate time frame - or someone else will have to do them       their choice.

    Again, thank you for all the support and prayers,
marg
     

[Patch]

    I'm scheduled for my 1 year post radiation this month. If all is well, Dr advised that I would have a MRI every year for the next 4 years and all is the same. I don't need to come back anymore.

    Is this normal or is he confidence, the tumor is dead.