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My Mom's Lymphoma

MikeThorne
Posts: 4
Joined: Nov 2013

Hey

So, yeah... this sucks. New to this site and new to cancer really. I am usually very well-written, but I am sure this will come across as a rambling stream of thoughts, for which i apologize. I just need to vent to people that I know will understand.

Well, today is Sunday 11/10. My mom is 72 and she was diagnosed w/ NHL these past few weeks. Tomorrow is the very first oncologist appt. It all started around Oct 1 when she felt very faint and weak. My parents just moved to Cape Cod from VA, where they've lived the past 20 years. She thought that the recent fatigue was due to the stress and exertion of the move. They moved to VA from CT back in 93. So after 20 years of them being so far away I was thrilled that the house finally sold so I took time off to help them move in. Not 4 weeks later, this all happens... I have been staying with them (because I can work remotely from anywhere) as we go through the Dr's visitis, PET scan, biopsy and constant fear and anxiety. I live in CT myself. I am 40 and married but my wife cannot be here with me because her job is not as flexible as mine.

Anyway, I am angry. I am scared and I am lonely. My mom never even lets the flu keep her down but this is just sapping everything she has. And she hasn't even begun treatment. We will find out what that is tomorrow. My uncle, her brother, died young @ age 43 in '87 of esophogial cancer. We all saw how horrific treatment was. He did everything he could to stay alive but nothing helped. I know and she knows that cancer treatment has come a long long way since 1987, heck even since 2008, but its hard not to feel terrified. Its hard to be here and be the ROCK for my mom and my dad when even as I type this all I want to do is cry and scream and choke the world for being so cruel. I try to remember that others on this earth have had it far far worse than my Mom and myself and everything, but it still feels incredibly unfair. All she has wanted since the reason for residing in VA no longer existed, was to move to the Cape and be near family (which we have a lot fof on the Cape, but I am 200 miles away in CT - a quick drive really compared with going to VA). So we finally can be close again and now this.

Some lymphoma info: So far all we know is it was first detected on her kidney in early October but the PET scan showed (and I saw it - wish i hadn't) that it was likely lymphoma - and wow there were a lot of spots with it in her chest and abdomen area. Her PCP confirmed is is B-Cell NHL. Thats all we know so far. I am guessing we will learn tomorrow that it is DLBCL from what I have been reading these past few weeks.

Does it always take this long to have your first oncologist appt? Seems like we've been waiting forever. PET scan was Oct 24... Her PCP did tell her that the chemo regimen was going to be R-CHOP. Sounds like a really awful treatment. She already has no energy or appetite. It kills me to see her like this and treatment hasn't even begun yet!!!

I don't know where I am going with all this. I am just terrified and needed to express myself somehow.

Thanks for reading and I welcome any feedback at all. Good luck to all of you.

-Mike

Folks24
Posts: 96
Joined: Feb 2007

I really can only speak for myself and my experience being age 56. I had NHL with no symptoms at all found  & went through R-Chop last year and while it wasn't no picnic, I got through it ok. I have Sjogrens too which is an auto-immune disease. It is very easy for me to catch flu, sinus infection, etc.  This gave my oncologist more concern so she was particular about what I could and couldnot do.  Kids and sick people were out.  I have never been a "big eater" and I lost weight with the chemo which is normal. I bought a lot of ensure and calorie laden stuff to keep my weight up. I got upset a lot on my weight but the oncologist said to go on more how I felt.

I was on prednisone 5 day after my R-chop treatment. About the 7th day after treatment was when the white cell count was the lowest and when I felt the crummiest - for about a wk to 1-1/2 weeks. I learned to pace myself, give myself a break, and on good days to stock up on groceries in the morning.

You have to be strong for your mother. There is consueling to help both you and her individually. I was solo through all my "stuff" but your mom has her husband and kids to feed emotionally off of. Sorry if this sounds harsh but she has enough anxiety and fear on her own without feeding off the families too. The best you can do for her is to keep your head on straight, listen and be there for her. A cancer/lymphoma diagnosis is something a person has to work through in their own mind individually. Having someone to talk to about it - someone who won't put their own emotions in the mix will help.

She CAN get through this. My NHL was very treatable and potentially curable. I won't know about the curable part till later years as I've only reach my one year anniversay lymphoma free.   Good luck!

Shoopy
Posts: 210
Joined: Jul 2013

Hi Mike.  I am sorry to hear about your mom's diagnosis.

If you've read other posts you'll know that I have DLBCL.  I was Stage IV-B.  I have had 3 different types of chemo because my cancer is 'chemo resistant' according to the doctors.  I agree with Mike...R-CHOP is no walk in the park...but it easier than the other two I've been through (R-DHAC & R-ICE).  DLBCL is treatable and curable.

I also agree that you need to keep your head on straight for your own mother.  Cancer is a nasty disease...have the attitude that you're going to show it no mercy!  There will be ups and downs.  I've equated this adventure to riding a roller coaster blindfolded.

I was Dx on May 18th.  They immediately performed the biopsy--only way to tell what type of lymphoma it is--and the other fun tests.  I had my first R-CHOP June 5th.  They moved quickly because it was obvious that DLBCL was extremely aggressive.

Before my Dx, I was a reasonably fit, 48yo male.  I exercised 3X a week.  Heck, I even participated in a sprint triathlon 4-5 years ago.  By June 4th, I couldn't get off the couch to get myself a glass of water.  I'm not telling you this to scare you--in fact, I think I might be a rather rare case.  I'm telling you this to put your mind a bit at ease that you're mother is going through a normal progression to this nasty disease.

Oh...and most importantly...remember to breath!

Karl

jimwins's picture
jimwins
Posts: 1980
Joined: Aug 2011

Hi Mike and welcome to the site.  I'm actually sitting in the waiting area at the cancer center here waiting to have my port accessed and then off to CT scan for my "peequila shot" and then to visit with the oncologist to discuss the results.  I'm fortunate that I get my results the same day.  

I'm sorry to hear about your mother but please know you and she are not alone here.  She is welcome to come to the site if she would like.  Also know Lymphoma is very treatable and Diffuse Large B Cell is considered curable.  I will be 2 years in remission assuming good results today!  :).  I had DLBCL and was treated with R-EPOCH (6 cycles in a hospital setting).  People's reactions to treatment can vary but they are very good at managing and preventing side effects these days.  Chemo is no picnic but it is doable.  It wasn't nearly as bad as I expected and  I was fortunate that the side effects were minimal for me.  

Please feel free to ask any qestions and please keep us updated.  I wish the best for you and your mom.

Jim

 

MikeThorne
Posts: 4
Joined: Nov 2013

Hello to "Folks24", Jim and Karl... and all

Thank you all for replying and sharing your insight and experience. I sit here now, just a little more than 24 hours after that first post, feeling a small sense of relief. As it turns out, all of the symptoms my mom has been suffering through these past weeks were all attributed to (A) several ulcers in her stomach that caused blood loss, which led to (B) severe iron deficiency. So the pain was from the ulcers and the extreme fatigue was from the iron deficiency. Somehow, no one at the ER shared the ulcer info with us, which led to a lot of mental anguish as mom sat here, convinced that the lymphoma was causing her pain, ruining any appetite for food, sapping her energy and essentially killing her these past 2 weeks. I will not get into the how's and why's behind how or why this very basic but useful ulcer information was not shared with us. Chalk it up to a busy ER and one of the rare times that no one was with my mom when the ultrasound (ulcer) results were shared with her (I was not here yet and my dad is very, but not totally, deaf. So even w/ hearing aids he doesnt catch everything).

So, back to the lymphoma diagnosis: I guessed before seeing the oncologist today, because mom's PCP did share that it was B-Cell and that R-CHOP would be the treatment, that she had DLBCL, and guess what? Yeah - DLBCL. But also, I had thought based on informaiton I found on cancer sites like this one, that it would be Stage 3 or 4. That's where I was very thankfully wrong! It is Stage 2, Grade III. On only one side of her diaphragm and spread only to her kidney, which is where and how it was originally diagnosed. Not making light of the fact that it is stage 2 and metastisized, but you have to understand - we saw the PET scan, and with untrained eyes thought it was in her lungs and just all over the place, but thankfully it is not.

It is agressive rather than indolent. I'm sure you all know that aggressive, as counter-intuitive as it seems, is the curable lymphoma, while the indolent strain is the one for which there is no cure. So, even though aggressive sounds very scary, it is apparently the lesser of the two evils. When the Dr explained that all these symptoms she had been suffering with would be relieved by one to two cycles of Iron via IV, you could feel the 10,000 lb weight reduce to about a ton. Even the Dr called it just bad timing to simultaneously have two separate health issues that can have similar symptoms. Did the lymphoma cause the ulcers? She couldn't say, but said it really didnt matter because they would treat her for both.

Mom truly believed, and we also feared, that the pain and extreme fatigue was a sympton of the steady evil march of her disease. Again, happy to be wrong. She had an IV drip of iron today for about an hour and will have another in a week. Even if she doesn't feel the physical relief just yet, the phsycological relief for all of us, but especially her, is palpable. It was a pleasure to hear her singing "Three Little Birds" with her iPod earbuds in this evening.

She has another iron IV drip appt on 11/18, and EKG on 11/20 and will start R-CHOP on 12/2. Somewhere b/t now and 12/2, she will have a port implanted because she has notoriously small and finicky veins. From what I have read and what the Dr said, the port is much less irritable than getting the chemo drugs via a regular vein.

R-CHOP is no walk on the beach, we all realize, but there is genuine hope. The Dr's feel that she is definitley healthy enough to receive the full R-CHOP regimen and are optimistic. So it seems like she will be bald by Christmas, and also going to her 2nd treatment on 12/23 if they are only 21 days apart. Mom already has a half dozen or so wigs because her skull is very slightly mishapen on the right from a craniotomy to remove a benign non-cancerous meningioma in April 2010, which is enough to make her hair grow oddly. So, yeah, she has had her share of health issues lately Frown. Haven't seen her wear a wig in a while because my aunt is a hairdresser and was able to give her a great haircut to disguise the odd hair growth - but soon it will all be gone anyway. It goes without saying that hair loss is a very small price to pay if the chemo is effective.

Since she was already feeling very crummy from the iron definciency, the Dr told her that, unfortunately, she has already had a small taste of what the chemo will make her feel like.

She is an incredibly brave woman and I admire her. I will do all I can to help and support her. My childhood was filled w/ Dr visits, hosipital stays and surgeries of my own. Mom (and Dad!) were both there for me through all of that and again came up from VA to CT when I had a serious setback in '96 when I was 23 that required another brain surgery and hospital stay. I know the fear and lonliness of serious health issues and I will do all I can to love and support her through this fight.

I also agree that she would likely benefit from the support of other lymphoma patients on this site. I am going to show it to her tomorrow. I believe she would be much more receptive to support here than she would in a traditional support group setting.

Sorry if I am rambling. A lot of emotions and mental fatigue. Looking foward to a restful sleep for myself but more importantly for Mom. She's been in bed for 3 hours now and I haven't heard a peep. I think her active imagination has finally let her get some sleep tonight. A wonder what information can do for a person. Fear of the unknown is torturous.

Thanks again for reading and sharing. I will continue to share our experience here as the fight continues. F cancer!

 

MikeThorne
Posts: 4
Joined: Nov 2013

Things have gone so downhill so quickly I am frightened and sad to say! RCHOP was scheduled to start on Dec 2 but on the morning of 11/27, the day before Turkey Day,  Mom had a perforation of her small intestine.  2 of them actually - caused by lymphoma tumors.  Taken by ambulance to Boston to Brigham & Women's / Dana Farber where they repaired the issue.  But that delayed chemo. It is now scheduled to start on or about Dec 9. The problem is that there is significant risk of another perforation at any time and especially when the chemo starts shrinking the tumors. If that happens during chemo they can't operate and it will mean the end has come.  We have been here in Boston with mom since that night. The disease has taken almost everything from her.  No mobility.  No energy.  No fair! 

  There is so much more I want to say... I am terrified and exhausted and just venting and reaching out. I am still reeling and in shock at how quickly this all happened.  The original diagnosis was so positive!  I feel cheated.  We all do. I am angry and afraid all the time. Right now we are driving back and forth from the Cape 90 minutes each way every day and night but will be staying locally somehow when chemo and the significantly increased risk begins.  Underlying A-fib and onboard fluid from surgery causing crazy fast heartbeats and scares...

I love my mom so very dearly and hate sitting watching this disease ravage her!

So we wait and pray.

MikeThorne
Posts: 4
Joined: Nov 2013

12/9 @ 11:15pm - 4 weeks to the day after mom's 1st oncologist visit, lymphoma stole her life. The lymphoma was never my mom's disease anyway - it was cancer's and cancer can keep it. F cancer.

Shoopy
Posts: 210
Joined: Jul 2013

Mike,  I am so sorry to hear about your mother.  You will be in my prayers tonight.  and yes...F cancer!

Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

I am so very sorry to hear about the loss of your beloved Mother. May you be comforted by warm memories of her.

My deepest condolences,

Rocquie

 

 

DadysGirl
Posts: 305
Joined: Aug 2011

I'm so very sorry about your lost. I apologize when I first read it I didn't quite understand, but when I read thefollowing posts I understood your post. I know everything was sudden with your Mom's illness and it will not seem real for a very long time, I to this day have a difficult time with the reality that my Dad is gone. I wishyou all patience and comfort in your heart filled with all the love you had for your Mom along with the unbearable pain you're feeling. Pray for your Mom and do good deeds on her behalf, that may give you some comfort...

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