Sharing "The News"

I have the same dx as you indolent B-cell lymphoma , folicullar stage 1A. I was dx in June and I am by now at my #4 chemo round. I am having R-CHOP regimen that includes Rituxan as well as monoclonal antibody. Unfortunatelly I lost my hear after first chemo. My tumor as yours the size of golf ball located in my pelvis/sacral spinal cord area. Regarding your question, I told my family right away my daughter and son in law. I told my boss and my closest collegues because even if you work you still miss the day of chemo and maybe some other days you are not feeling too good and leave home early. I do work as well ans so far I missed only my chemo days. I told my closest friends as well they could support you and give you courage. Positive attitude is very important and if many people are praying for you the better.

May God be with us.

Dana

Pat sorry you're in this group but glad you have found this site, there are many people here who will help you along and calm your fears.  I wish when I started my journey, I was a member.

 I don't want to repeat the great advice you already received.  My two cents may not  applicable for my situation was different.  I chose not to tell anyone because my father was diagnosised three weeks after me and was very ill.  Having two young children, both me and my father having stage IV NHL, I needed to protect my parents then children.  Long story, I won't bore you with the ugly details.

What I can tell you is (that at times) hiding my cancer was harder than having cancer but it was also a blessing.

 I watched my dear father go through his Cancer journey and witnessed the love and support he received from family, friends....... everyone.  I could only image what that was like. I think what scared me the most was not having anyone pray for me.

 Fortunately for me my best friend is an oncologist and her husband is my oncologist.  Even more fortunate is that they are rather fancy in the oncology world.  Having earned a PHD, Ivy League trained and well respected; I was in good hands.  My husband is an attorney and hires world class doctors all the time.  His research proved invaluable.  I also have another doctor in Boston because of the friend situation who is probadly one of the best on the east coast for what I have. Triple bonus.

For the first year it was only them and my sisters-in-law (2) who knew.  I knew one would need support so I told both.  So for me it was a very small world.  I did learn that it's not the number but the quality of people you trust with this information.

 At times I benefited from my secret because when I walked out the door and ran into people I could just me the old me and not the new me with cancer.  The downside of coarse was no one knew the hell that I was going through.   I still had to do Christmas and birthdays and host dinners and perform like everything was fine.  Why, because if my father knew, it would have killed him before the cancer did.  Now I have to protect my mother.

 You see there is no perfect scenario you just have to do what's best for you.  I would have loved to of had prayers and support but I did learn to dig deep, deeper yet and then some more.  I have become a warrior of sorts  and that's great for me.

I wish you a seamless journey with the best results!  

Blessing to you!

PeprmntPat55 said:

Update on Sharing the News

Just a quick update on my post.  I did a Caring Bridge website then shared it via social media and email.  The response I've received has been overwhelmingly positive and I am very happy about that.  

I'm getting ready to post a journal update on CB due to my "education" visit today. Required prior to Cycle 1.  

My therapy drugs are Rituxan and Bendamustine.  Ding, Ding, Ding!  Max you get first prize for guessing that combo!  

Rituxan and Bendamustine on Day 1, 8 hr infusion. Day 2 is Bendamustine only, 90min infustion.  

Not sure how that will be on a Monday/Tuesday.  I am trying to work as much as possible so it will be interesting to see how I hold up until the weekend!  

I feel so blessed to have found this discussion board. It has been very helpful just reading other posts as well.  

Blessings to each of you, 

PP55

I've been in a cave for the last week or so. Bad cold and just blah.

Anyway I was diagnosed 12/2014 with FNHL. My PCP found the lump in my abdomen when I mentioned had 3 unusual bowel sessions. (I have IBS which is why I watch my bowel movements.) She ordered a CT scan and ultrasound on thyroid. They also found I had pluersy. Biopsy done on mass.  When my PCP called to say that the initial CT scan & ultrasound showed lymphoma and to give me the name of an oncologist she called me on my cell. So she did not know I was at work. I worked for 2 mgrs at the time. The one mgr is a breast cancer survivor and was at my desk when I got the call. She ended up being the first person I told. I gave my husband the news when I got home.  Did tell the other mgr the next day but no one else. I decided to not say anything to my kids (all adults) until I had all the details. 

So Jan 2015 I saw a Dr at Rush Chgo for a second opinion. That is when I was told it was stage 4. After that I called each of my kids to tell them what was going on and what I know about the treatment. Calling my brother ended up being the hardest since our parents are gone and it's just the 2 of us. I let them tell their kids. The next day I put together a list of the people I knew at work and worked with and then emailed them what was going on. A couple of days later I did the same at home for family & friends. Somewhere in there was church. We have a very small group so I just told them all what was going on. 

Like you found, the out pouring of support floored me. Some of our consultants asked if it was ok to ask their families back in India to pray for my recovery. I told them "a prayer is a prayer and I'll take all I can get and I don't care what religion". 

Around that time I had a cath put in to drain the pleursy so I could breath. My husband was trained how to drain the fluid.  Jan 13 2015 had my first chemo of R-Chop. Last one was in May.  Once the dates were set I emailed the work people as to the date of chemo (1 day) days working from home (5 work days) and days I planned on being in the office (9 work days). I sent updates when the scheduled changed for medical appts.  

Keeping everyone updated, especially at work, meant that most face-to-face meetings were the old "Hi, how are you.", "hanging in there". They already had the details and it meant I wasn't spending a lot of time verablly updating each person as I saw them. (I work in a large IT dept.)

After the R-Chop was done there were still signs of the lymphoma. So the next step was 3 cycles of RICE (Aug, Sept & Oct) as a prep for Stem Cell. There were more bone marrows, CT/PET Scans between Nov & Feb and we started the Stem Cell collection in March. It was slow and the third day they stopped it before we began because the platelets had dropped too much. SCT was put on hold. Anoter round of tests showing no sign of the FNHL and it was decided that there would be no SCT, just 2 years of Rituxan maintenance. I was also told that if it were to come back they would use other treatments that are in trail or developement now. When I sent out my emails with this news I made it the last. Told everyone I would let them know if there were any changes. 

One thing I wish I had not done. With the last chemo in Oct my hair had started growing back pretty good by March. Since the SCT schedule was the collection followed by the chemo/transplant, after the second day of the collection i cut my hair as short as I could. That was 5 months of growth. so now I am back at the 5 month point again. I would suggest to anyone getting a treatment that could cause them to loose their hair, don't cut or shave your hair until it actually starts to fall out. 

Talking about working. I had to be in the hospital for 3 days for the RICE so I brought my laptop and my work laptop. I set myself a schedule so that I worked during the day and played in the evening. (I am a geek.) Made the days go quick and kept my mind off of what was going on. 

I hope this help Patti and good luck. 

Hi Pat,  I wanted to reach out to you.  I had hodgkins lymphoma 23 years ago and am free from the desease. I am now battling uterine cancer and am hoping for the best.  Ever since i found out about uterine cancer i have been involved on this CSN board.  I peek in this section once in a while. I wanted to let you know I am almost divorced.  Waiting for the papers to come. Ive done this cancer stuff with out my husband.  I know for me it helped to hear others in that situation.  I have a ninty year old grandpa.  He just recently got put in a nursing home and his wife died two short years ago.  Hes been through alot.  Although he wasnt told anything about this new cancer i have now in the begining because we felt it would be too much for him, with my okay, he was eventually told that i had cancer again.  I dont have many people in my family who have had cancer.  A few on my dads side of the family but i dont know them very well or they have already died.  My 90 year old grandpa ( who is on my mothers side) has had cancer and because of that i have a bond with him.  Thats why i wanted him to know.  Thanks for sharing your story.

That was exactly my thought. It would have been worse with him here. Having cancer helped me to know that divorce was right for me.