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Lisha, what's up?

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Hey Lisha,

Somewhere on one of the threads I read a little about your experience/results since you were at MD Anderson. I can't seem to find that post again.
I am interested in what your experience was there at Anderson, but also, what did they do and what did they tell you about your disease?

I do remember that your worst pain is your shoulder. Taking preds for that does not sound like my idea of a good time. What is your condition and what do you have upcoming?

I think that I remember that you have your home back to yourselves which must be helpful. But how are you doing with your husband?

I laid awake at 2:00 AM two nights ago thinking of all of the earth-shattering issues that you have had to deal with. Actually made me feel guilty that I was not having a "good" week. I wonder how you are doing. I know that I am behind in information, so I promise to try to keep up better in the future. Sometimes life just happens.

Anyway, peaceful healing to yourself.
Tom (DLBCL-Stage 4-7/10-Remission)

miss maggie
Posts: 929
Joined: Mar 2010

Tom, my thoughts exactly.

I try and check the boards each day to see how everyone is doing and feeling. Even though I am in remission, my concern for everyone is sincere.

Hopefully Lisha will post soon. We are all concerned.

Love Maggie

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Tom and all,

Thanks for asking about me. I've been feeling a bit lost. To much going on and not enough going on.
Anderson was a great place. I am really glad that I went. I will be going back for more follow up etc. The waiting is still very hard, but doable. Knowing that there is cancer lurking in many places scares me. But I have to trust that the Drs know what they are doing. I was going to have whole body Rads in Nov, but was told that it would not help. So I did not go along with the advice to have it anyway. The Docs at Anderson told me that they would not have told me to get the whole body rads. So, I feel good in refusing that tx. I may still get IMRT. That is a much more focused type of Rads. Chemo is still on the table as an option. It depends on tumor growth etc. Also, surgery may be in my near future. I will have another ct and pet scan to look for changes. that should determine what tx will be next. The Docs seemed concerned about the new lung tumor. It's very small and I pray that it stays that way. If it does, that we will do nothing, if it grows or multiplies, I will get chemo and or surgery. A lot to look forward to..
The shoulder issue is really hard to take. I had surgery last May and worked so hard with PT to get it back to normal. In Nov I was telling everyone how amazing it felt. No pain almost 100% movement. I was so happy with that. Then in Dec it started hurting, just a little at first. But more and more everyday. The only thing I can think of that may have injured it was lifting my MIL in bed. Of course it never occured to me that I could injure myself, I was only thinking of MIL. So I had another MRI which shows a tear in the labrum. This is new from the last problem. The pain is there and certain movements seem to dislocate it.I have tried taking the Pred but feel no difference. I will talk to the ortho doc soon to see what else can be done, other than surgery.
My husband has surgery set for his shoulder on Feb 9. He has a torn rotator cuff which he has put on the back burner till now. So for us both to have crappy painful shoulders at the same time just is to much. He really needs to get his fixed now. He has put it off for such a long time and I worry that he may done more harm with waiting. So he will get his repaired then I will see about me.
I am thinking that the next trip to Houston will be by myself. I think that I can manage it. I'm not scared of the scans and tests, just not sure about going alone. At least I know what to expect, sort of..
Any advice would be so helpful. I find it hard to talk with my girls right now.
I hope that you and everyone else are holding strong.
Peaceful healing
Lisha

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi All,

Just wanted to say sorry for the long post. I found myself typing away and just pressed send. I guess I needed to get that out of me. I know that I may have repeated myself, so I am just saying sorry.

Lisha

truckingalong
Posts: 444
Joined: Aug 2010

Lisha, I am so glad to read your long post. You are a real pleasant expressive person! No need to apologize.

I know how that is when you and hubby have same problem with the shoulder - no fun. One thing at a time and hope that eventually both of you will feel better with this.

Your girls would use support as they find in their environment. They can be resilient and in fact, you help them gain strength in coping with whatever you deal with. I can imagine they let you know how they are doing and where they are going with you. This I wish you the best.

At Anderson center, do they have support person who can be with you there if you are alone there?

Hugs,
Liz

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Liz,

Thanks for the kind warm words. I knew that if I asked all of you for your advice, I'd receive some great suggestions.
I never thought of someone at Anderson being with me if I went alone. I'll look into it. I am still not sure if I would go alone, but maybe.
I hope your doing okay. I know you had your last chemo and may be having the after effects. I hope that they are few and mild. You have been through so much. Stay strong
Peaceful healing
Lisha

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Lisha,
I was soooo glad to see your post and have you explain "EVERYTHING" thats going on with you. I'm the kind of person that needs to hear more info than less, so please don't apologize for your informative post. You are in my thoughts every single day, and obviously with many others also. We have you covered day and night dear lady with our love and prayers....you are on all of our minds! I hope your husbands rotator surgery goes well..been there, done that. It's sure not easy, but if it's done right and heals properly, it will be soooo worth it! Mine didn't heal 100%, but it sure works better than it did before surgery. I wish I lived close to you and was able to help you through this mountain of problems you are dealing with..I truely do! Re-think going alone to MDA...you need to have someone with you..daughter, friend..someone. It's times like this I wish I was rich...I'd book a flight and be right by your side to MDA. Keep us informed and remember you are loved and we are "always" here for you.
God bless you..Sue..(FNHL-2-3A-6/10)

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Sue,

Now I have tears. Your so kind and caring. I too wish I was rich. I would have all of us meet some place special and share some warm fun times with each other. Maybe someday we can meet.
I have hope that when the drama in Key West is over, I may be able to do so much more. And one of my favorite places is the Ho rain forest. So of course I would have to stop by and say hi.
Thanks for all the love and support

Lisha

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Hi Lisha,

Thanks for the great, informative post. Most of all, I'm so sorry that you even have to think about any of this and think about going to Houston alone. Your cancer journey has been so tumultuous, with so many things being imposed upon you at the same time, it's hard to imagine. I think that you must be some strong lady to still be with it.

I'm glad that you got to Anderson. Nobody is perfect, even MD Anderson, but they will do the best things that can be done for you. Of that I'm convinced.

As big as it is, Anderson has a good patient care organization. Your patient advocate representative should have met you and given you a card or phone number. Please call them to find out about arrangements IF you decide to go alone next time. And, also, please let me know when you are going to be there (if you want). It's only a 5 hour drive for me and I spent all of 2008 driving down there every week (for business), so I would be happy to help in any way. Believe me, I know the drill - wait, wait, prep, wait, test, move to next test area and wait.

Also sorry to hear about your shoulder. Anything that is causing immediate pain is more of a bother in the right now than even the cancer is. Continued pain can be lived with, but now days there should be ways to reduce it. If you really need to have the surgery, I encourage you to consider it. The reason I say this is that, in my opinion, continued, constant pain will have the effect of lowering your resistance to the real threat in your body. You should do everything you can to enhance your well-being to keep fighting off the cancer. I don't know if they can even do surgery on your shoulder if you are under other treatment, but I think that you should do what it takes to get rid of the pain. (I know that you may be surprised to hear that I'm not an actual, you know, MD doctor - but that's what I think.)

Please keep us updated.
And peaceful healing back at you.
Tom (DLBCL-Stage 4-7/10-Remission)

miss maggie
Posts: 929
Joined: Mar 2010

Hi Lisha,

I read and re-read everyone's post to you. I couldn't have said it any better. You have traveled a long road for so long. I know you won't give up now.I have no idea if you are taking any medication for depression. If not, why not ask the doctor for some. If you are, have the doctor increase the dosage just slightly. I am not an advocate for depression medication. Being sad everyday, and wondering about the future must be horrible.

Just my thoughts to you. Hope it helps Love Maggie

yesyes2
Posts: 592
Joined: Jul 2009

Hey Lisha,

I think it is wonderful how you are able to express your thoughts and feelings. At least here on the CSN. I'm sure, at least for me, it's not so easy to do this with our children. I see what a strong and caring women you are and know that this has certainly helped to getyou through all you have been faced with.
You know I do live way closer to you than Washington. just over the mountain to the coast, a beautiful drive on a clear day. If you need some help or just want to visit, need a friend who understands I'd be happy and honored to come up your way. Just give a shout.

Love, Leslie

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Dr Tom,
Thanks for your advice and kind offer to help. I guess my brain is still not working at it's best. I did receive cards with phone numbers. I had forgotten that. Stuck them in my carry on computer bag and just have not looked inside since returning home. Needing to be reminded of such small details, really makes me rethink going alone. At first I was thinking how hard can it be. A few more tests, maybe a another biopsy, but nothing to big. Then I started thinking what if. What if I need to have a bigger surgery or lung procedure. I don't think I would want to be alone. Lots to keep thinking about.
Can I ask you where you stayed when visiting anderson. I stayed at the Holiday Inn, but was thinking of staying at the Rotary House Hotel or maybe the near by marriott. Any suggestions on a nice and safe place to stay would be great.
The shoulder issue will have to wait till keith has his fixed in about a week. After he has recovered enough to function, I will see what I can do. My guess is that I would need to have any repair done before starting any new rads or chemo. Not sure, but I will ask on my next Dr visit. Lots to do, but I don't really want to do any of it...
Peaceful healing
Lisha

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Hi Lisha,
No worries on remembering all of the details. I never remember everything - even some of what the doc says. Don't worry about it.

The thing about Houston is that I lived there for 8 years in the '70's (good Lord, is it really that long ago?) Yes, actually, June 4, 1970 is the day I drove into town. By the time I left in 1978 I was married and had a "family" back in Houston. So I have been fortunate to be able to stay at my brother-in-law's house in Pasadena when down in Houston for testing, most of the time. A few times we stayed at a Quality Suites out on Pasadena Freeway (225) which is new and very well run - one of my favorite motels. (Met a very personable Vietnamese man there who actually laid all of the tile and granite that they use in the hotel rooms and bathrooms, and still works there in the AM for the current owner.) However, I would not recommend that hotel for you because of the drive to get over to the hospital district. (When I had a 6:00 AM appointment for PET we left the house in Pasadena at 5:00 AM. The hotel is a little closer, but not much.)

All of that to say that I would try the Rotary House (depending on the rates and the reviews that you can find). I like it because it is on site, as you know. I'm sure the Marriott would be fine also, but I would check the online reviews. Hotels are some of the easiest items to find user reviews for, so I would try that. In your case, I think the closer the better, but some of the facilities nearby may be pretty old.

I think that most of the testing that you have done there would not be a problem alone. HOWEVER, please don't think about going there for any kind of treatment procedure alone. Even if you stay at their hotel, you don't want to be in treatment by yourself. (Yes, it is done often, but only if there is no other way.) And there may be some testing procedures that are more invasive that would help to have someone with you, such as invasive biopsies. (I will only have another bone marrow biopsy under general anesthesia.)

I have often thought that it is such a waste of time for my lovely bride to go there for the testing because all she does is sit and wait -- ALLLLLL day. And then we have to go back down the next week to meet with the doc to get the results, which is more important for her to be there. So I know what you are going through.

Anyway, for right now, try to focus on healing. Please keep us posted.
Warm and best wishes,
Tom (DLBCL-Stage 4-7/10-Remission)

truckingalong
Posts: 444
Joined: Aug 2010

Hi, Tom and Lisha,

Being the social worker by career, I cannot help but think of volunteer visitors. Wonder if one can request for someone who can just visit or stay with a patient? Just a quick thought.

Good luck
Liz

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

I cannot add anything that hasn't already been so beautifully said. But do let me add my prayers and know that my thoughts are with you. I loved reading the part about all of us meeting one day. Imagine the feeling of being surrounded by people who understand completely what this all feels like. Thank God we have this site. Good luck,God Bless and take care. Mary

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

I agree with Mary, it's all been said. You are in my prayers Lisha. I am taking effexor and it helps me. I decided to take that instead of others because it doesn't put weight on. Take care and God bless you.

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

By the time I got here it had all been said. So count me in. John(FNHL-1-4A-5/10)

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