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3erd time around???

givingrace's picture
givingrace
Posts: 155
Joined: Nov 2012

Hi,

Have not been on this sight for a few years.

My first diagnosis was 2010 with NH 3erd Stage Follicular,slow growing . Second 2014.

Now ... the lymph node that swelled up at first diagnosi in 2010 is sore to the touch . I came down with a 48 hr bug ( cold type bug ) on Friday. By Sunday morning I was feeling much better but the area from surgery in 2010, was sore. It’s still sore. My gums are swollen.

Trouble is I moved across country and got married to my high school sweetheart and I don’t have oncology or primary dr. yet. Everyone is scheduling a month  to two out. So I went to ER. They said it was possible salivary gland infection. I’m so hypersensitive I don’t believe them. 

i have been foolish not to set this up before I moved but everything has been moving so fast I think I just shot myself in the foot.

I have antibiotics and will be mak more phone called tomorrow but boy do I feel frustrated and mad at myself.

i should have been more careful.

 

 

 

 

Rocquie's picture
Rocquie
Posts: 815
Joined: Mar 2013

I'm glad to hear from you.

Congratulations of your marriage to your high school sweatheart! How romantic. I wonder if you ever got that camper you were dreaming about before?

I hope the antiobiotics have you feeling better by now. And I hope that is all it takes. I think we all understand the hypersensitivity you are talking about, but there is no need to be mad at yourself. Maybe you could call your former oncologist and ask for a referral to one in your new home town? Then make an appointment even if it is a few weeks out. I really hope you are not having a recurrence, but we both know follicular lymphoma has a tendency to do that, thus the hypersensitity. But try to remember it is slow moving and there are many treatment options available. 

Once you have taken steps, try to keep it out of your mind as much as possible so you can enjoy that new husband of yours!

As you, yourself would say, "Never give up"!

Hugs,

Rocquie

 

givingrace's picture
givingrace
Posts: 155
Joined: Nov 2012

Thank you Rocquie,

I am much more settled,grounded,and calmer today.

Very good to hear from you! I hope you are doing well. 

Yes our Journey back to each other has been pretty exciting. we are truly blessed and so so happy. He was always my missing piece.

We will start looking for an RV in a year so we can travel the USA . Just settling in  for our first year as a married couple.

I have the report from the ER and I have two lymphnodes that are swollwn,A gland that is infected.

My adenoid and palatine tonsils also have some mild swelling.No stones or mass.

My gums are back to normal color and are not sore anymore.

Blood work wasn't too bad.

seems like the antibiotics are helping forsure.

My cold/flu was gone yesterday and the day before but today I do feel very run down and have body aches. Not unmanagable

I found an oncologist and have appointment next Thursday.

That takes away alot of stress knowing I have someone to see.

This last three years have been a wild ride and I feel as if I was in a battle and I am home now.

My last treatment was April  2017.

Its good to know I don't have to  this life with NHL alone . This site is a saving grace for so many including myself.

The suport and information I get from this sight is so helpful.

I hope everyone had a nice 4th of July .

Never give up!  

Hugs back :)

 

illead's picture
illead
Posts: 787
Joined: Aug 2012

It is good to hear from you again, I think about you whenever I see a tiny house, think that is what you were thinking about.  Anyway, I sure hope this is nothing, sounds like you have had a bit of a battle.  Let's hope it is not starting up again and is an easy fix.  Congrats on your marriage, sounds like a fun whirlwind.

My best,

Becky

givingrace's picture
givingrace
Posts: 155
Joined: Nov 2012

Thank you  illead,

Well It’s good to hear from you .

I sure had great plans but once my true love came back into my life everything changed. Whirlwind is an understatement! :)

So tiny house was put away ,maybe we will re visit it later.

i am going to remain as positive as possible.

As I always try and remind myself  .... Its nothing until they say it’s something .

I welcome an easy fix.

hugs and smiles,

givingrace

 

illead's picture
illead
Posts: 787
Joined: Aug 2012

You just don't know how refreshing it is for us oldtimers to hear from friends in the past.  Thank you Givingrace and please keep us in the loop. So very happy for you.

Becky

givingrace's picture
givingrace
Posts: 155
Joined: Nov 2012

It is very refreshing for me to hear from you all as well.

I think I am in such a better space after time has passed since my car accident/head injury/2nd diagnosis. So to have the comerodery/friendship and support again is very nice. 

I missed ya'll!!! :)

Update: I still have appointment with new oncology tomorrow.

But... I have started to have pins and needles pain in upper chest. Went to ER again. My red count dropped 30 pts since last week. I am a little alarmed by that but I was told I have allergies. I will just be very happy to see new oncology tomorrow.

I am feeling hopeful that I will feel better soon and more answers always help.

 

Rocquie's picture
Rocquie
Posts: 815
Joined: Mar 2013

GG, I am going to be thinking of you tomorrow as you visit your new oncologist. I hope you will keep us updated.

Hugs and Prayers,

Rocquie

 

givingrace's picture
givingrace
Posts: 155
Joined: Nov 2012

Update...

i am so happy. I went to new oncologist . I loved the facility. It was bright ,happy, cheery and very clean .

The oncology staff were REALLY efficient. My new oncologist blew into the room . All I could think was “he isn’t going to spend any time and will blow otta here before we know anything.” I was WRONG. :) He was very very kind,bedside manner was great. He asked me lots of questions about my his including my husband in a way that was just perfect. Some Dr.s out there will blow the spouse off and I think sometimes it’s relevant but not this case. He answered all questions. Unfortunately I got 2 hrs sleep the night before and forgot my list, and pretty much forgot my questions. Thank God for my husband who did remember a lot. My appointment was great. The kicker was when he looking at computers and asking questions all of a sudden in a inquis and excited voice he looks at me and sais.....”How do you know ——-?” I said we he’s my oncologist in my previous state. He said....”I know him, I was even in his house! So what are the odds of me moving across country to a small town, choosing and oncologist then getting mildly sick and having the medical people change my oncologist to one I was very skeptical about and he knows my oncologist that has cared for me for 8 years? All I can say is God blatantly showed me he has EVERYTHING under control and to trust him.  

My concern is  I have been pretty ignorant about PET scans vs. CAT scans having follicular NHL. The cancer has never created a mad or tumor so I somehow started to believe that a PET scan was the only was to determine if I had any activity if it were to come back again in my lymphatic system as in my 1st diagnosis I was 3erd Stage but no tumor/mass involvement. I have had about 10 PET scans. My friend who was the Vietnam Medic/ER Medical Dr. till retirement asked me one day how many I had. When I answered him he “rolled “ his eyes and said that’s not very good.  So this oncologist told me he will only do one if he has to. Have I been wrong all along and if it were to come back blood work and a CAT Scan is enough to see anything . Even if it were only in my lymph node or a gland???

He ordered blood work and very efficiently felt all those lymph node spots. Said he will only call if there is something wrong.He wanted me to live my life / enjoy my new life and he will worry about the NHL.

So my dear friends.....THATS ALL FOLKS.!

well wishes and joy to you all. 

P.S.

All my fears were addressed at church last Sunday. My church family were very loud about supporting me and giving it to God and they were very” hands on “,so this appointment was very full of amazing grace as far as I was concerned. Peace out ✌️ 

 

Rocquie's picture
Rocquie
Posts: 815
Joined: Mar 2013

GG, this all sounds great! I am so happy you like and trust your new doctor. I'm happy your husband is so supportive as well as your church. 

You are moving in the right direction, so don't be a stranger, OK?

Cheers,

Rocquie

 

givingrace's picture
givingrace
Posts: 155
Joined: Nov 2012

Thank you so much! Happy Sunday everyone!

I will keep focused and know the no matter what I’ll be okay.

The great part is I don’t have to do any of this journey alone.

The support from you gals and guys have really helped me in so many ways.

peace and joy to ya!

GG!

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