OT - I'm Engaged! & an update on health

Lisey
on 10/10/11 1:42 pm - Milwaukee suburb, WI
Happy news all!!!

I am officially engaged now.  Dating was a big challenge for me prior to surgery.  I've never been in love before, or even thought I might be.  I'm very excited, though the big day won't happen for at least 2 - 3 years b/c he needs to complete his Ph.D. first.

Love good news!

In other good news, I'm now safely back in Wisconsin where I can see all my family and friends.  Finances royally suck, but well, that's fairly common with significant illnesses.  I don't have a job anymore now that I'm here and I'm going to just focus on getting better.  Other people will pay my essential expenses on my behalf during this time period.  I'm very blessed to have such giving, wonderful, supportive people in my life AND all around me - all at the same time vs 700 miles away in Missouri.

I've got a great new dr.  He specifically specializes in lymphomas and has taught at the National Health Institute and is quoted in research on lymphomas.  He spent 1.5 hrs with me during my consult going over everything I could possibly want to know.  He confirmed pretty much everything I had found in research.  Here are the hilites:

My overall 5 yr survival rate is 70 - 75%.  I have a 30 - 40% chance of relapse.  If I should relapse, a stem cell (bone marrow) transplant is my next treatment option.  The overall 5 year survival rate for that is 50 - 60%, if it should come to that.  I immediately skipped my first period after my first treatment.  Given I'm 34, and not considered young by fertility standards, it is very unlikely I will become fertile again.  The dr. said there's a 50% chance I may never get them back and actually go into menopause . .. yeah, at 34.  Sheesh.

I have a PET scan this coming Tue that's pretty significant in that 88% of those who are not cancer free by this point in my treatment relapse within an average of 2.2 years, despite continuing treatment as standard - an additional 6 months of chemo if positive vs an additional 4 months only of chemo if negative.  I'm a little scared b/c I had 3 nights in a row this past week where I had night sweats, the 2 before my last chemo and the night of my chemo.  Night sweats is considered an advanced symptom and I had them for months.  They stopped about 1.5 weeks after my first treatment and then I had them for 2 nights - the night right before my second treatment and the night of . . . but, I didn't have them at all coming up on the 3rd treatment.  This past one was my 4th treatment.  Makes me thing/ fear that the cancer is then not gone.  I'll see next week Tuesday.

But, on happier notes . . . . I'M HOME AND I'M ENGAGED!!!!!!!!!!!!!!!!!!!!!!!

I now also have internet at home again and, now that life is settling back down, I will be back on OH more.  I've missed you guys!

HW / SW / CW / GW      299 / 287160 / 140     Feb '09 / Mar '09 / Dec '13 /Aug '10          

Appendicitis/Bowel Obstruction Surgery 8/21/10
Beat Hodgkin's Lymphoma!  7/15/2011 - 1/26/2012 


Ran Half-Marathon 10/14/2012

First Pregnancy, Due 8/12/14                             I LOVE MY DS!!!
 

NoMore B.
on 10/10/11 1:55 pm
 Oh Lisey, I've been thinking about you.  I'm glad you're able to post.

So first off - Congratulations on the Engagement!  That is fantastic news.

On the health front, those favorable statitics and your positive attitude are going to get you through this, I know it.  Having a good doctor that you can talk to and trust is going to matter, too.

I cant pretend to imagine what it feels like for you.  I admire greatly your courage, strength, and optimism.  I just know you're going to be fine and there is a point in your future where this chapter is only a memory.

Hugs
Lisey
on 10/10/11 9:47 pm - Milwaukee suburb, WI
Thank you so much for all of your compliments, well wishes, and congratulations!  I'm in the best possible place I can be right now. 

HW / SW / CW / GW      299 / 287160 / 140     Feb '09 / Mar '09 / Dec '13 /Aug '10          

Appendicitis/Bowel Obstruction Surgery 8/21/10
Beat Hodgkin's Lymphoma!  7/15/2011 - 1/26/2012 


Ran Half-Marathon 10/14/2012

First Pregnancy, Due 8/12/14                             I LOVE MY DS!!!
 

lauralisi
on 10/10/11 2:09 pm - Dona Ana, NM
Best wishes to the bride-to-be!!  And congratulations on getting the right Dr.
Swinging anything and praying for a remission.
Please keep us posted.
Lisey
on 10/10/11 9:48 pm - Milwaukee suburb, WI
Thank you!!

HW / SW / CW / GW      299 / 287160 / 140     Feb '09 / Mar '09 / Dec '13 /Aug '10          

Appendicitis/Bowel Obstruction Surgery 8/21/10
Beat Hodgkin's Lymphoma!  7/15/2011 - 1/26/2012 


Ran Half-Marathon 10/14/2012

First Pregnancy, Due 8/12/14                             I LOVE MY DS!!!
 

Its a Secret
on 10/10/11 2:27 pm
Glad to hear things are so wonderful.  If you haven't already, apply at lls.org for grants that will help with costs for transportation etc...things not covered by insurance and I think copays.

My brother is currently surviving a sct after AML and should be out within 15 days :)

Take care of yourself, it's a long road :)


                
Lisey
on 10/10/11 9:54 pm - Milwaukee suburb, WI
Thank you about lls . . . I actually already got a grant from them to cover coinsurance on chemo treatments and health care insurance premiums, though it will run out by the end of the year (then others in my family will pick up my expenses).  I'm sure your brother probably already has the low-down on everything that could help financially, but I also know that, depending on his income level, there's several other programs available.  Cancer Care has a $100 grant.  The American Cancer Society gives a $50 gas card.  There's also a few other foundations he could check out, they're disease-specific & I don't know if AML is covered.  Incidentally, my grandfather had AML.  Other foundations that I remember (but didn't help me) are the Healthwell Foundation, the National Institute of Rare Diseases, & the Patient Assistance Foundation (or was it Patient Assistance Program?).  I also remember there being a grant from the National Bone Marrow Society or a closely related foundation - it was specifically for BMT's.  I hope that helps :)

HW / SW / CW / GW      299 / 287160 / 140     Feb '09 / Mar '09 / Dec '13 /Aug '10          

Appendicitis/Bowel Obstruction Surgery 8/21/10
Beat Hodgkin's Lymphoma!  7/15/2011 - 1/26/2012 


Ran Half-Marathon 10/14/2012

First Pregnancy, Due 8/12/14                             I LOVE MY DS!!!
 

(deactivated member)
on 10/10/11 2:40 pm - San Jose, CA

Congratulations on all fronts!  I'm sorry you had to leave your job, but how wonderful that you have so much support from your family and friends.

My first thought when you mentioned night sweats was that it was related to the effect of the drugs on your hormonal status - menopause can create your own personal tropical experience!  Try not to read too much into that just yet.

We all will be thinking nothing but good thoughts for the results of your PET scan.

Lisey
on 10/10/11 10:01 pm - Milwaukee suburb, WI
I didn't even think about hot flashes or night sweats from menopause symptoms.  Maybe that's it.  I didn't wake up with night sweats last night, but had to strip down & lay on the covers b/c I swear I felt like a little furnace (but no fever).  I like this possibility better :)  Thank you for your well wishes!

HW / SW / CW / GW      299 / 287160 / 140     Feb '09 / Mar '09 / Dec '13 /Aug '10          

Appendicitis/Bowel Obstruction Surgery 8/21/10
Beat Hodgkin's Lymphoma!  7/15/2011 - 1/26/2012 


Ran Half-Marathon 10/14/2012

First Pregnancy, Due 8/12/14                             I LOVE MY DS!!!
 

NoMore B.
on 10/10/11 11:14 pm
 Oh yes, now that Diana said that it makes perfect sense that's what it could be.  I had a hysterectomy with my ovaries removed a few years before my DS and it forced me into surgical menopause.  Those night sweats are exactly what I went through.

Let's hope that's all it is for you.  
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