Very bad news today

[tito]

My wife's lymphoma has been diagnosed as B-cell (follicular), non-hodgkins. It is very slow growing. No cure, however they can keep it in remission with chemo, radiation, stem cell therapy or other medication. It is likely they will not do anything for my wife right now, as she has few symptoms. Many people can live 20 plus years with this, but I believe the median is 10 (however, this includes older people and deaths from all causes, my wife is 59). Unfortunately, my wife is right now zeroing in on the median as the amount of time she has left.

I gave up with those statistics - if I believed them I would probably be dead from kidney disease already. I think a lot has to do with your physical condition, your age, mental attitude and support system. Patrice is a very spiritual yoga teacher.

We're running into a situation where there is nobody to take care of us. I am on PD with AVN and can hardly walk right now. I'll probably have to have one or both hips replaced. Patrice is tired. We live on the second floor of a three-family house which we own. We are responsible for the tenants.

I can hardly get groceries up the stairs. Thankfully, my sister in law just gave us a present of a weekly cleaning service for a year (she's pretty wealthy). I'm going to have to see about grocery delivery and other services. I still work as a teacher.

Again, thank you all so much for your words of support and encouragement. It means a lot.

I'm traveling to NY tomorrow to get on the Columbia-Presbyterian kidney transplant list. I'm already listed at Brigham in Boston. I've got to get well to take care of my wife.

Pete

[monrein]

Thanks for the update tito, I've been waiting to hear what you found out.  I totally agree with you about the statistics and the predictions.  I'm personally 55 years past the death they predicted for me at 8 months old.  All the things you mention are very important and I'm sure will serve Patrice well.
Good luck with your appointment tomorrow and your sister's gift is a really useful, thoughtful one.   

[MooseMom]

We may not make much in this country anymore, but boy,do we provide services!  My local grocery store provides a delivery service.  The family who lives two doors down from us have a lawn service and use Peapod; they also have milk delivered by the local milkman (I didn't even know there were milkmen in the US; I loved having fresh milk delivered each day when I lived in England).  If there is something that needs doing, you'll find someone to do it for you, especially in this economy where jobs are scarce.  The problem comes in paying for it all, but perhaps your social worker could offer some suggestions?  Your sister-in-law deserves a medal for providing weekly cleaning services for a year!  That's fabulous!

Statistics are there just so that you can prove them wrong.

How is your wife coping with the diagnosis?  How are YOU coping with it?

[thegrammalady]

attitude is everything. you sound like you have a good start. the glass is half full, not half empty. you can make it i know you can. i like the saying "when god hands you lemons, make lemonade"

[Dianejt]

We also live in Taxachusetts and  agree with Rightside we do have the best in Medical anywhere. My thoughts are with both of you & your love & strenght will see you through.

[cloud393]

Thank you for the update.  I've been thinking of you and your wife.  I have an uncle who had the same thing and he did wonderful for a long time.  Wishing you and your wife the best.

[galvo]

I, too, was very statistically inclined in the early phase. I have now grown away from the stats and am now concentrating on a 'day at a time'.

Best wishes to you both.

[tito]

Hi everyone,

Again, thanks so much for the thoughts, prayers and nice words.

To update, I returned from NY having visited Columbia-Presbyterian. I am really impressed by the hospital and everyone I met. They seem to have a very aggressive kidney transplant program in terms of procurement and surgery. Their median wait time is pretty short as a result. I am gathering all my records from Brigham to send to NY. I have a feeling I am going to get a transplant at this hospital - it's good luck, as my wife was born there!

Patrice is doing a bit better. She saw the oncology social worker and also asked her doctor some more questions. She seems to be in better spirits, as they both told her about the many therapies they have for her cancer and that many people live for quite a while with it.

I'm no closer to hip surgery, but my next appointment with the surgeon is May 29, and he apparently has a lot of operating room time, so the wait shouldn't be too bad.

I saw the PD social worker and we're both on track for some home services.

I continue to teach, and it's about all I can do to get out of bed in the morning, get through the day and collapse at home. It's not the PD, but the hip and leg pain. I was a bit non-compliant during the few weeks around Patrice's diagnosis. Skipped a few daytime exchanges, wasn't eating right. Now I'm back and doing better. I lost a few pounds which I needed to do anyway! Patrice continues to teach her yoga classes. I think it's quite good for her. Her fatigue, however, is quite bad.

Talking really helps. Thanks again for allowing me to spill my guts to you folks!

Pete

[plugger]

I guess sometimes you have to be grateful for what you have had and have - anything else on top of it is icing on the cake.  It does sound like you two are going to have a lot time left together, so that was great to hear!

I do like the saying about making lemonade out of lemons.  I know I was a wreck for awhile when I found out my daughter had kidney disease (nobody should get it, but feel it is better left to a mean old man such as myself).  But she wound up going to pharmacy school and marrying a wonderful guy - so life is looking pretty good for her right now.  I guess all these setbacks don't have to be the end of the world.

[Bajanne]

Tito, I am only now reading this entire thread.  Just want you to know that my caring thoughts and prayers are with you and Patrice.  I detect such a strength in both of you.  I am convinced that things will work out for your best.  In the final analysis, it is not the challlenges, but the attitude, that make a difference.  Please be assured that, if you let us,  your IHD family will be with you through all that you have to face

[galvo]

Keeo fighting the good fight, Tito.

[Jean]

Yes, Tito, keep up the trying. I hope your little wife gets her spirits cheered up a little bit more, and that you can find some help there too. We are all behind you and sending big cyber hugs to both of you. 

[Mimi]

Tito, you and Patrice are in my heart and prayers.  The two of you are going through some rough times, but please remember that This
too shall pass.  In the meantime you will have to muddle through.  We are all right here so please continue to let us know how things are going.  Yoga is a wonderful thing for Patrice to be teaching.  It calms and takes the stress out of your body.  I have used it for years to calm my nerves.  You know the saying tough times don't last, but tough people do.

Love, Mimi

[lola]

Hang in there Tito

[MooseMom]

I'm so glad to hear that you all are in line for some home services.  Anything that will lessen the load will be of great help.

Can you tell us more about Patrice's treatment plan?  What is the goal?  Remission?  When can she expect to feel physically better?

How are you coping with your hip pain?  Chronic pain can really turn your life upside down, so I hope that you are getting help in that regard.

Keep us posted about your transplant progress.  I know you are both going through such a hard time.  I wish I could find some silver lining, some cosmic lesson that you will learn from all of this, but I can't.  I know you support each other.  Please do keep us updated, OK?