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Newbie with very little support

CritterMamaLori's picture
CritterMamaLori
Posts: 28
Joined: Feb 2018

Hi, my name is Lori. Soon to be 55 years old. I have never posted on any kind of discussions board.

I was diagnosed mid Jan. with Non Hodgkins lymphoma Type B intermediate.  Everything went so fast after my biopsy and my neck swelled to suffocating dimensions.  I was sipping broth for food. I slept wedged between pillows and a towel rolled under the back of my neck to breathe.  I had to start chemo 10 days ago before a port was installed to reduce the swelling. My neck is now down to normal size and I can actually eat.

I hadn't been to a Dr in over 20 years and quit drinking over 25 years ago and quit smoking 7 years ago. I have an unreasonable phobia of needles so this has been a difficult start to say the least. I've found out a have really "bad" veins also. My port is scheduled for next week.

My husband and I moved from our hometown a few years ago and we don't have any friends or family in this area. The town we live in has no cancer support system. Nearest one is over an hour away. Fortunately,  many of the Drs from an hour away come here a few days a week to take care of people like me.

Information online is not very consistant or nonspecific so I decided to come here for possibly some friendly support, information and experiences.

Thank you.

po18guy's picture
po18guy
Posts: 839
Joined: Nov 2011

In your case, your husband is your support. Now, he cannot know what you are going through, but he has an idea. However, hubbys sometimes have the "stiff upper lip" or John Wayne attitude and while that might work with his friends, and maybe even most guys, women are not wired like that (a good thing!). Your case points out something important when diagnosed with cancer: the first thing we want to know is if someone else is undergoing the same thing. 

Your case also points out how utterly individual our cases are. We all share something, but the specifics are going to be completely different. The sleeping with pillows I remember - but I used them for a different reason. As to contact with others, Skype can be huge. It is so comforting to interact face-to-face, even in cyberspace, with those whom we know and love.

Anonymous forums such as this one can also be a great help, and a new type of relationship is formed right here. A lot of advice and counsel is available and while not all of it will help, we accept it in the spirit in which it was offered. 

As to needles, time to reverse your thinking and realize that life itself now comes through those needles. I do not necessarily like needles, but I have had hundreds of them in me over the past ten years, and now inject myself due to type II diabetes.

Always remember that you must be alive to have complaints.

CritterMamaLori's picture
CritterMamaLori
Posts: 28
Joined: Feb 2018

Thanks for reply.

Skype is good if you actually have people you know to talk to. Hubby and I are both only children and my parents are gone. Don't think I could be that personal with a stranger. I guess that is why I went this route after I didn't know what else to do.  I think just having somebody...anybody...to talk to would be a great asset. My hubby is gone at work for long hours. He works near home so he's just a call away and can be here in minutes but not physically here much of the time.

Do I sound pathetic? Not trying to but it's lonely out here with the unknown. 

po18guy's picture
po18guy
Posts: 839
Joined: Nov 2011

"I went looking for a friend and found none. I became a friend and found many."

It might help to think of others who are far worse off than you are. You can be their lifeline. In helping them, you will also be helped. That's just the way life works. Your treatment center, or various lymphoma foundations have systems in place to connect you with other patients for mutual support. Check the Lymphoma Research Foundation, for but one example.

CritterMamaLori's picture
CritterMamaLori
Posts: 28
Joined: Feb 2018

I must be in the wrong place. Just looking for common support and maybe a friendly connection. I kinda feel lectured...

Maybe a discussion board is not my forte.

po18guy's picture
po18guy
Posts: 839
Joined: Nov 2011

Sorry if I came across wrong! And this points out the problems with internet conversations. Typed characters on a page do not have the eye-contact, the one-on-one quality that in-person conversations do.

I will bow out and allow you to interact with others.

CritterMamaLori's picture
CritterMamaLori
Posts: 28
Joined: Feb 2018

And apologize for taking you the wrong way. Like I said, I'm just kind of lost in all this. I do agree that typed words sometimes don't get read as intended. I'm no professional writer and get misunderstood often.

Peace to you. Let's not be strangers because of a misunderstanding. 

Evarista
Posts: 177
Joined: May 2017

Hey Lori, this forum is here to offer support when you need it.  So sorry about your diagnosis, but congratulations for acknowledging that you need some support and for reaching out.  You'll find that folks here will offer what comfort they can, but you'll also find that you won't always agree with what someone has to say.  That's OK. You'll also find that some days you'll get a lot of feedback and other days you just won't.  That's because we are all sick to some degree and not always able to be "there" for others.

Your journey is just starting, but it sounds as though you've found a medical team that knows how to treat you. If you have questions about your treatment or handling side effects, of course ask your medical team, but it's OK to get input here too.  One suggest I would make to you straight away is to find out from your doctors what services you might take advantage of locally, so that you are not exhausting yourself and your husband driving hours to the clinic.  By services I mean specifically: blood work (possibly 2X per week), post-chemo Neulasta/Neupagen shot (if you cannot get this locally, ask your doctor about "on-board" Neulasta...It's a new thing).  Also, where can you go locally if you spike a fever. While it's great that they come to you regularly, there may be times in-between when you need something.

It would be helpful if you shared the chemo regimen that you are looking at...R-EPOCH? R-CHOP? Or?

You may also want to take advantage of the "Chat" feature on this site.  You can find the CSN Chatroom in the upper left hand corner of this page (you must be logged in). There is almost always someone logged in looking to connect.  I am not a "chatter", but I look in there occasionally and see that many folks are that friendships have formed.  The Chatroom is not organized by cancer type the way the forum is, but I expect that you will find people who share your concerns and be happy to talk in real-time.  Right now, that may be exactly what you need.  (As always with a chatroom, be cautious with your personal information.)

Be well and let us know how you are doing. 

CritterMamaLori's picture
CritterMamaLori
Posts: 28
Joined: Feb 2018

Evarista, thanks.

As I stated I'm new to this and the cancer diagnosis. I don't know a lot of the technical jargon and learning as I go. I will try to find out what the chemo regimen I am on. My first treatment was divided into 2 consecutive days and ended with that Neulasta. I have a folder with all the drugs but no name for the regimen. 

It all happened so fast and was/is so confusing to me. I kind of got shoved in each direction without really knowing what was going on. I have anxiety and depression issues anyway and kind of shut down when it all started. My husband just kept everything together and gets me to where I need to be. There are several offices and a couple hospitals in our town that deal with cancer but the primary oncologists travel from an hour away for treatments and appointments. There are absolutely no support groups in town. Even talking personally with survivors they tell me there is no support near by.

I will definitely check out the chat feature and I am more experienced in that than a discussion board.

Again, thank you and good luck to all!

Rocquie's picture
Rocquie
Posts: 797
Joined: Mar 2013

Hello Lori and welcome to the group. We are a diverse group of people with one thing in common--lymphoma. I have been hanging around here for 5 years and feel like I have made a lot of friends. Like you, I had no support other than my husband, and thank God for him. I read about people cooking meals, running errands, cleaning, laundry, and more to support those with cancer. All my friends disappeared. I could see someone I knew in a store, they would pretend they didn't see me and scoot to another aisle. 

My friends, here at this site, supported me while I was still in treatment and experiencing side effects. In turn, I try to support others. Sometimes the lines blur and you aren't sure who is helping who. 

If you click on my picture (or anyone's) it will take you to my "about me" page. The page helps us know one another better and I encourage you to fill yours in too.  It can be modified at any time as you learn and experience more.  

Again, welcome! I hope you find what you are looking for here with us.

Hugs,

Rocquie

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Welcome and rest assure you are in a good place here.  Many of us have a thicker skin now.  As survivors we have gone through the chaos, pain, fear of our own personal journey.  Sometimes it may come off as insensitive yet was meant to be the polar opposite.  Some have endured much and overcame unimaginable odds.

Like you and Rocquie I had little to no support not even from my husband.  He was a mess in the beginning, when he tried to help it was all wrong.  He can't cope, plain and simple.

You see I was protecting my young children and my parents for very difficult reasons which made me hide my cancer from almost everyone.

I recall getting out of my treatment on December 15th, in the height of the Holiday season cooking, decorating, shopping, wrapping, hiding the gifts from little eyes, spending time with my sick father and being the master of ceremonies on Christmas Day.  I didn't feel well, tired beyond anything I have ever known before; I just sat down when a family member was making digs at me because I dont do enough.  

For a moment I wanted to cry.  Where was the out pouring of love, care and concern I witnessed from everyone giving my father?  I too read the stories where people bring food etc.....  I remember another family member with an elevated voice tell me, I knew nothing of lymphoma.  He did because his mother in law had it.  Little did he know his sister was battling the same thing.

 

My point in telling you this is, it was hard and still is.  I didn't even find this safe haven until a year after I learned I had stage IV incurable cancer.  I had to be better than I was, somehow.  I learned to dig deeper then deeper yet.  Cancer is hard and terrifying but it also made me a warrior and a woman of more meaning and substance.  My appreciation for life, my family, my sassy strength are priceless.

 

I always try to look at the positive.  You're ahead of me, I found this place one year after diagnosis.  How I wish I had this.  There is something quite comforting about this group.  We have all been there. Different yet similar paths.  We know your fears and concerns and when some else has been there it takes on a whole new meaning.

 

Dont be discouraged but empowered because you have this group.  May you seek and find more.

All my best

CritterMamaLori's picture
CritterMamaLori
Posts: 28
Joined: Feb 2018

I feel so weak. Not just physically but mentally. I hope that I can be as strong as you all sound here. I cry daily and pull one way to fight and then the other way as feeling no one cares so why fight. I know that there are so many more worse off than I and don't have the opportunity or odds to beat it and win. I feel selfish. I'm at the bottom now but want to be able to be the encouragement that I desperately need myself. I'm rambling...feeling sorry for myself...

Dr appointment today. ...gonna get poked again. THAT is an emotional event for me in itself.  I was terrorized as a child. Threatened with shots for punishment.....

I will read this thread over and over and try to absorb every positive word.

I will work on my profile when I get home today.

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

You’re not weak, I too was at rock bottom.  I cried too and had pathetic pitty parties for myself saying Rituxin was waisted on me.  Then I quickly dried my eyes and said the heck it was!  My misery didn’t get the best of me and your needle wont get the best of you Today.  This is not punishment.   This is just a tool to help better aid the doctors with information to better treat you. The threat of yesterday needs to be buried.   Easier said I know but hang in there.  I also hate needles.  I give you full permission to tell the needle to go to H.E. double hockey sticks to if you want to :-)

Today I don’t even blink.

Good Luck!

CritterMamaLori's picture
CritterMamaLori
Posts: 28
Joined: Feb 2018

Another appointment down. I did find out my regimen is R-CHOP.

All at the office were amazed at the difference in the size of my neck and asked if I was eating well... as in actually chewing and swallowing as opposed to drinking my meals.

Hubby commented I am doing a little better with my needle issue. I have to give some credit to po18guy to help think of it as a life line instead if a threat. Still can't get past the panic attack but maybe in time I won't tear up everytime I talk about it. I would be happy if the nightmares would stop. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2865
Joined: May 2012

I welcome you also, Critter Mama. I am wondering if your screen name suggests pets ? They are often very supportive emotionally.

You will make many friends here.  I did not start on this Board until a few years after chemo ended for me, and I can't even remember why.  The responders will all be different:  Some "clinical," writing only about "factual" issues. Others are mostly emotional, but most are somewhere in-between. You will have a selection to choose between.

R-CHOP is the most common first-line (initial) treatment for most Non-Hodgkin's Lymphomas (NHL).  Virtually all of the ommon side-effects are common with it, but most people only have a few, and there is no way to predict which a given patient will or will not get.  And side-effects ordinarily increase over time, with more infusions completed.

I have always been squeemish and could not tolerate needles, so a port was absolutely vital in my case.  I was run over by a car 30 years ago, and spent about a month in ICU. Constant needles, proceedures. But the worst was arterial blood gases, in which blood is drawn from both arms at once from arteries (not veins), to measure blood gases on each side of the lungs and heart. Probably the worst pain I've endured, although I was awake when a surgeon thrust a chest tube into me to reinflate my lung; this was through 13 rib fractures.  And my knee cap was hanging loose inside me pant's leg, when my clothes were cut off.   I also had "shunts" in both arms, and more drain tubes than I can recall.   Saline flushes every few hours to remove clots in the lines, which burned badly.

After lymphoma, I later got prostate cancer, and had that cut out -- horrible.  I count about 23 surgical incisions today.  My point is that we all get through all of these things.  My listr of medical conditions is two pages long, single-spaced. And all are significant issues: stuff like lung fibrosis, neurological disorders, and many more.   We survive NOT by being heros, but because we essentially have no choice.

I was bedridden almost my whole 6 months on chemo, and had almost no visitors the whole time. Slept about 15 to 17 hours per day.  Most days I could only get to the bathroom. My wife had to pre-heat the car and help me walk out to it when necessary.  Ergo, "visitors" were an impossibility for me.  My lungs were too weak most of the time for me to even speak on the telephone. 

I did make numerous friends at infusion, however, and among the oncology staff, people I still know and cherish today.  A neighbor got NHL about a year before I did a very aggressive strain.  He was a big guy, about 6'4', maybe 300.  Before he was finished with his R-EPOCH therapy, he was skeletal, mayber 130 pounds.  His roommate was a body builder, and had towrap him in blankets and carry him to the car to go for infusions, which for him (and most people on r-epoch) was as an inpatient.   On days when he did not have treatment, his roommate had a bed set up in their living room, but he was unable to get up by himself.  He is totally well today.

My wife did everything for me; without her I do suspect that I would have in fact died.  Recalling later, I do remember waking up alone at  home a few times, unable to breath. I had to pant like a dog to survive, probably due to the fibrosis...my oxygenation was probably close to death.

I hope you find support here.  But you will get through this and get well, absolutely,

max

CritterMamaLori's picture
CritterMamaLori
Posts: 28
Joined: Feb 2018

Hi Max, thank you for the warm welcome and your story. You are definitely here for a reason. Much continuing strength to you.

My hubby and I have no human children. We have all rescues. 3 cats and a dog. One of my kitties I believe is a compassion animal. He knows when I'm having a "bad" day and will not leave my lap or my side. As soon as I can figure out the other aspects of this site I will post photos.

I have to say everyone here has already helped me in one way or another. I hope I can do the same soon.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

You are on your way! One step at a time, kudos to you for another one is down and progress was made!  You should be very proud of yourself.  Building your own support network, facing real fears head on and moving forward.  Good for you!

Evarista
Posts: 177
Joined: May 2017

So, as you are learning, one day and one step at a time.  Ups and downs are going to be your norm for a while, so, as everyone here will tell you: do not beat yourself up about it and do not feel guilty or whatever for the bad feelings that may come over you.  There are likely to be more to come, but being ready for them (like with the needle) will help.

So, R-CHOP.  Nobody is going to tell you that this will be fun, but it is doable.  There a some things that you can do now to help yourself with it.  First, get your house cleaned.  Hire a company if you need to.  Set up "hygeine stations": bacterial hand-cleaner & masks at your entrances, wet-wipes & face masks in your handbag and the cars. Your immune system is going to be suppressed and you need to protect yourself.  Use the "elbow bump" greeting instead of the handshake.

Second, keep yourself as physically active as you can.  The more fit you can stay, the more quickly you can get back to business once your chemo is done.  Even if it's just walking around the block, do it!  When you are in-patient (if you are in-patient), walk the halls.  Be sure to keep yourself safe, though.  Use a walker if you need it, stay off slippery surfaces, etc.

Third: groceries.  Your appetite may tank, so be prepared for that.  Tell your husband what you love-love-love and make sure that he has it in the house for you. Try to eat healthy, keeping your protein up.  Bring in at least a few protein drinks (Ensure, Boost, etc).

Fourth: constipation.  Do not underestimate the degree to which your chemo can bring everything to a grinding halt.  Better to stay ahead of it than to suffer with a severe situation. High fiber foods if you can, drink water, take Colace or similar if you need it.  An ounce of prevention is definitely worth a pound of cure here, as many of us can Frown attest to!

Fifth: Neulasta-associated bone pain.  Sounds like you didn't have it with your first dose and hopefully you won't ever.  But if you do, many of us have had success with Claritin (this is anecdotal, so be sure to check with your doctor).

Last: do something nice for yourself. If you can, go shopping for something lovely, a good book (audiobooks are great to have during chemo), a video you've always wanted to see, whatever. 

Wishing you an easy time of it. 

CritterMamaLori's picture
CritterMamaLori
Posts: 28
Joined: Feb 2018

Thanks for all these great tips. 

I will be working on those stations. With this flu going around I'm already a germaphobe in public.

If weather cooperates, walking my 3/4 acre lot should be feasible. 

I love salad but have been warned to stay away from my fav made to eats. Fortunately the store is on hubby's way home on the corner for spur of the moment cravings.

I did have a small issue with the bone pain but my chemo girls set me straight with the Claritin. I've tried to keep a journal of how to take my meds for the next go-round. I've never been a big med taker so I have been told to take the preventative measures seriously and make sure to do them to avoid problems. 

I surely wish we could afford a cleaning service but that is not doable. I've even tried to recruit but it looks like it's just me. I can only do what I can. Only 2 of us and we aren't that messy but with 3 cats and a dog vacuuming and litter are the worst part. Hubby can do some but he works 50 hours a week just so we can keep the household bills paid.

I will definitely work on theses and any tips and advice is greatly appreciated. 

I'm glad I posted here! I'll be in chat off and on as I like that format also. 

:-)

Evarista
Posts: 177
Joined: May 2017

We are dog people and managing that can be tricky.  If you can keep them from jumping on you, great. If not, wash hands after petting them.  And no pets on the bed if possible. I found they didn't like the chemo smell on my skin, so tended to keep away more than usual.

Most important:  under no circumstances should you handle the soiled kitty litter.  That must be hubby's job. 

Nellie4579's picture
Nellie4579
Posts: 16
Joined: Dec 2017

Hi Critter Mama, i understand your fear of needles, i have been terrified  of them my whole life! 3 years go i had to have monthly blood draws for managing Rheumatoid Arthritis, I had to lay down the first time, they took 6 tubes! Little did i know it would help me adjust to what i am dealing with now. I have my last RCHOP treatment next tuesday. Yes i still get a little nervous when it is time to get poked but nothing like before.

I slipped on a patch of ice last Friday and broke my wrist, i may have to have it set on Wedensday now that terrifies me!! It looks like you are getting a lot of good advice, just remember the next time you get blood drawn at least you're not getting a bone setTongue Out

CritterMamaLori's picture
CritterMamaLori
Posts: 28
Joined: Feb 2018

Hi Nellie,

Fortunately I have never broken anything but a toe. Hopefully things will go well and your wrist will heal quickly.

Best to you on your last treatment and you are free! Keep us updated on your progress! I can't wait to say I'm on my last treatment.

Sal0101's picture
Sal0101
Posts: 110
Joined: Sep 2015

Hi Lori, 

Keep walking, whether it’s a mile or a block!  When I went through R-Chop I continued to walk outside as much as possible. just getting outside was helpful. You can eat salad and veggies!  However, wash, wash, wash them! OR steam and sauté them. 

I putzed around the house, ie: cleaned. Consider it exercise and the chair is there if you need it!  As the treatment goes on, you will feel more tired. however enough energy to feed the cats, dog, dust and vacuum. (leave the litter box for your husband).

I worked at the same time, however my employer allowed me to work from home. It kept my brain working.

I love my port. It saved my small veins. i think you will like it a lot especially if you are afraid of needles. 

Sharon

 

 

 

Sal0101's picture
Sal0101
Posts: 110
Joined: Sep 2015

Oh! Miralax and Claritin were My best friends!! 

CritterMamaLori's picture
CritterMamaLori
Posts: 28
Joined: Feb 2018

He insists I will be back. :-) Just before diagnosed I was promoted to manager at a great little ice cream parlor. I love my job and the owner is willing to work with me however he can to keep me there. It can get slightly physical with the deep cleaning but he's willing to do those chores until I feel I'm ready or handle what I can. Also working with school kids I can delegate what I need done. I really can't wait to get back.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2865
Joined: May 2012

Critter,

About 6 weeks into my R-ABVD, I was doing so well that I went back to work part-time doing ATM repair for an armored car company.  Stressful, but I enjoyed it.

After my next infusion, however, "the bottom fell out," and working became a distant memory.

My point: returning to your job will probably be benefical emotionally to you. Just be aware that your schedule will always be subject to change, perhaps even rapidly.  Or, maybe not.  While many people's chemo journey was a nightmare (mine, for instance), most usually are not.  Many writers here worked through therapy,

max

CritterMamaLori's picture
CritterMamaLori
Posts: 28
Joined: Feb 2018

Thanks Max. I know I've only had one treatment so far and it put me "down" for just under a week. I am hesitant about jumping back in without knowing what the next treatment will bring. I'm not even sure about my immune system with working with the public. I had bloodwork done Mon. I'm trying to contact my Dr to get an "official" opinion and this will decide whether I will try a few hours this weekend before my port surgery on Monday.

Will update when I talk to Dr. :-)

Update: Blood work came back good. White count up and I responded to the Neulasta well. Okay'd to work a few hours as I feel well enough to do. Yay! :-)

CritterMamaLori's picture
CritterMamaLori
Posts: 28
Joined: Feb 2018

Sharon, Did you use this every day or stop then start again after treatment day? My treatments are 21 days apart. Label directions say don't use more than 7 days.

Rexmax's picture
Rexmax
Posts: 37
Joined: Apr 2017

We are here for you whenever you need a friend to just chat or vent. I found this site when first diagnosed last April and it has been a godsend for me. Like you I had R-Chop and live in very small town with no Drs or hospital within about an hour. I had so many questions I thought everyone here must think I was a real nut case, however that was not the case, everyone was genuinely friendly and more than happy to listen and offer any suggestions or help they could which I so greatly appreciated. No one is the same so not all suggestions worked but most did. This site got me thru all my chemo and I'm now on 2 years of Rituxan maintenance every 8 weeks. 3 down and 9 to go. I will get thru this and so will you! Evarista GREAT TIPS!!!

CritterMamaLori's picture
CritterMamaLori
Posts: 28
Joined: Feb 2018

I was reluctant to post because of the lack of local support and wondered if it were like that all over. I'm glad I posted and got so many replies and information. I actually smiled when I got home from my appointment today. 

Best to you on the maintenance.  Maybe someday we will all be free!

CritterMamaLori's picture
CritterMamaLori
Posts: 28
Joined: Feb 2018

I will start a new thread as I think my "good eats" question may benefit many....

lindary's picture
lindary
Posts: 608
Joined: Mar 2015

I did R-Chop in 2015 for stage 4 follicular non-hodgkins lymphoma. I've never been a big fan of needles so I was glad to get a port but not until after my first round of chemo. Mine was a little stubborn so I ended up doing 3 cycles of RICE with plans for a stem cell. We got to the point of collecting stem cells and then stopped. My platlets kept dropping to the point it wasn't safe to continue. In April of 2016 it was put on hold. Then in June of 2016 they decided to cancel those plans. I did 2 years of Rituxan maintenance and completed the last Oct. I am now 2 years in remission.

I was able to work through most of the treamtents. I can work from home so I had days to work from home and other days in the office. Being in the office really kept me moving, from one meeting to another. I got good support from my husband as far as meals and the appts went. When it came to keeping track of what was going on, it was up to me and my journal. I also got a lot of support from co-workers, family and friends. I felt I was doing good until I decided to join this discussion board. Suddenly I was talking to people who "get it". I didn't have to explain why I was feeling the way I did. It is also so comforting to read someone's post and see the words and questions that have been bouncing around in your own head. 

This group provides the greatest support just by being here. 

Pinknikegirl1974
Posts: 12
Joined: Feb 2018

Today’s my first day here and you were the first to reply to my post so I thought I would stop by and read your story. I understand the feeling down you wrote about here. It seems very easy for others to tell us to keep a positive attitude when cancer is such an emotional roller coaster! It’s scary not knowing what to expect but it was nice finding this site and people going through similar experiences To be able to talk with.As much support as I’ve gotten from my husband, my son and my pug, unless someone has had it themselves I feel like they will never completely get what it feels like. It sure can be a lonely feeling sometimes. 

It sounds to me like you’re adjusting very well and I sure hope the best for you with your treatments! 

 

CritterMamaLori's picture
CritterMamaLori
Posts: 28
Joined: Feb 2018

So I got my port today.  6 hours for a 30 minute procedure.  We were told to be at the hospital at 6:45am. We didn't even get in a room until 8. Surgeon told us at consult that we would be his first at 8. First nurse was kind of rude asking me to pee in a cup when I hadn't had anything to eat or drink since 9 the night before and as usual getting up a few times during the night to use the restroom. There wasn't anything in me! It was just for a pregnancy test that I have had several times since this nightmare began. There is no way I am pregnant. Ended up drawing blood from my iv.... Took another hour and was told surgeon wouldn't be there til 9:30. I don't know what time I finally got in but I was out about 11 when hubby was talked to. Surgeon said they tried to put it in the left side but it didn't work so they got it in the right. My oncologist told us that they normally put it in the right so the cath would curve to the heart. Now I have 2 holes in my chest and hurt through BOTH shoulders and my neck. I feel tortured. As if having cancer isn't enough. We finally left at 12:30 pm. Unbelievable...

My nightmare continues...

PS...my hair is almost all gone.... :'(

kerg99
Posts: 2
Joined: Feb 2018

Hi guys

What an insane week. My wife went to Dr last Wed with a mild cough. He was a bit concerned so he took a chest X-ray which found a fairly large mass in her chest.  After a whirlwind of CT, PET and biopsy, we found out she has Primary Metialstinal B Cell Lymphoma. The mass is shockingly large at 15 CM x 8 CM. ive actually been very impressed with how fast they have moved here. We are at Walter Reed innDC and they’ve been impressive. She started DA-EPOCH-R today and seems to be tolerating it well so far. I don’t think it’s really hit us yet what this all means. My question for all you great warriors, what can I do to help her through this?  What would you guys want from your spouse or loved ones?  I’ve been reading a lot about this, and I’m getting there, but I know you guys have lessons. She’s 39 and in good health. She didn’t have any b symtoms, though she’s had a rash for 4 months that im convinced is related. It’s a big mass but only in one spot so sounds like it is stage 1 or 2. All the reports sat EPOCH is going to crush the lymphoma, but holy smokes.  

 

Anyways thanks for the sounding board and Crittermama, your story is inspiring with how fast your growths seem to have shrunk. thanks for letting he newest newbie crash the party. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2865
Joined: May 2012

kerg,

I must ask what is your wife's Stage ?   Was her bone marrow biopsy negative ?  With a PET completed they know her Stage now.  From your write-up, it sounds as if the known cancer consists of only the one huge tumor, nothing else. Extremely rare and odd if correct.  Lymphoma is by its nature a systemic disease, that travels all over the body, which is why it must be treated systemically; i.e., with chemo.

At times with a huge mass, oncologists will supplement the chemo with radiation (a practice known as "debulking"), especially if adjacent organ crushing is threatened. I myself was diagnosed in this manner:  No one suspected I had any disease, until severe heart pain showed that the heart was compressed by massive adjacent nodes.   But debulking is used only as-needed, and not the norm.  And adding radiation to a chemo combination increases the chances for a subsequent leukemia to develop years later.

R-EPOCH is commonly very harsh, and many patients have to receive at least parts of it as an inpatient (ordinarily 3 or 4 days in hospital, then returning home until the next set), but this is not true of everyone.  But do be aware that moving infusions to an inpatient setting is a possibility later on.  "DA" just means "dose-adjusted," meaning that her doctors can increase or reduce her dosing at any time as they see necessary and beneficial.

Best of luck to you both,

max

CritterMamaLori's picture
CritterMamaLori
Posts: 28
Joined: Feb 2018

Hey kerg, 2018-02-22

Education helps somewhat but when I got here I figured out that no one is the same, results aren't the same and side effects are so different. It's good to be here for the support and to know you aren't alone in this journey.

The best advice for you wanting to be supportive is knowing what I am putting my husband through as he is my closest relative and best friend. As he has pointed out to me, I can be kind of grumpy and tend to "take things out" on him. I don't notice this myself. I have gotten where I try to warn him that I'm not having a good day or I have a treatment coming up so don't poke the bear. It's easy to lash out but not mean to hurt the ones closest you feelings. Don't take it personal even if it is hard to ignore. It really isn't worth a fight or the stress you put your wife through when it can't be controlled sometimes. Hubby says, "It's a long, hard ride. Patience is a virtue." (Even when he doesn't have much to begin with.) Just be there. Let her know you will be there no matter what happens... even with frustrations of not knowing what's going to happen. 

Fyi~I'm not the pretty woman he married but it's only temporary. Once through the journey I hope to be a better person mentally and physically. 

DJS628
Posts: 23
Joined: Mar 2018

Hi CritterMama (love your name!),

 

Cancer is a scary thing!  Don't let anyone tell you that you have to be strong and brave and show no fear at any time!  If anyone tells you that, they obviously haven't been in our shoes.

 

Glad you found this site.  I just found it a few weeks ago & finally posted my first post about a half hour ago.

I also HATE needles! But with each appointment, procedure, etc., for some reason, I don't mind them as much.  I used to get so nervous just before a doctor's appointment, but now I just walk in without much fear any more.

Friends and family need to know that anyone who is sick (esp. with cancer!) will  have their bad days.  I remember being so tired after treatment and I snapped at someone/over-reacted to something they said or did. Afterwards I just told the person that I was sorry, but I was super tired and just need some time to rest.

Ask your oncologist if there is a  cancer support group in your area.  It has helped me greatly.  I know some people don't want to talk about having cancer, but I've found sharing what we've gone through really helps.  Eventhough we may have the same cancer, the treatment may be different, or your reactions to the treatment may be different.  But just talking to someone who has "been there" helps.  You are not alone!

 

I had stage 1 diffuse large b cell lymphoma in the fall of 2015.  I was in complete remission, feeling great during the spring/summer of 2017 (last year).  But it came back in July!  So I had R-Chop chemo treatment again, followed by intensive chemo therapy, then a stem cell transplant this January.  I am again, in remission.

 

Try to stay positive and take one day at a time.  Please keep posting.  I wish you well!  You have lots of supporters on here, rooting for you!

Take Care,

DJS628

Evarista
Posts: 177
Joined: May 2017

Kerg, so sorry that your wife and you have to go through this. Hopefully it will go easily for her.  Many points covered already about the multitude of household tasks, but not much about the medical.  So what I really, really appreciated was my husband paying attention to the medical stuff for me because I was very in-one-ear-and-out-the-other.  You may not be able to rendezvous with the medical team when they round each day, but do be sure to leave a pad and pen close by your wife so that both of you can write down your questions ahead of time for them and someone can write down the answers for you.  And if you have a question, ask! 

If you have time & energy right now, make a grocery list (preferably a computer document) that includes the brands, flavors, sizes, etc. of food that you each like.  If you need someone to shop for you, you can just copy/paste the needed items and send them to someone by email.  That was a huge help for us.  Good luck.

Evarista
Posts: 177
Joined: May 2017

Buy her at least one beautiful head covering: scarf, knit cap, etc.  Amazon and Headcovers.com have a good selection.  And a sleep cap (the head gets cold!).  But do not give these to her until/unless she needs...It might just upset her before hand.  

Tell her every day that she is still beautiful. 

Rocquie's picture
Rocquie
Posts: 797
Joined: Mar 2013

One thing my husband did for me that meant so much was that he always referred to "our" lymphoma, our oncologist, our appointment, etc. It always let me know he was in it with me.

Rocquie

kerg99
Posts: 2
Joined: Feb 2018

all those are great advice. Thanks so much. Her prognosis is good, but we know it’s going to be a 5 month long fistfight. She’s just about done with EPOCH round one and hasn’t had too many side effects yet other than fatigue. I know there are others coming though. 

lindary's picture
lindary
Posts: 608
Joined: Mar 2015

Make sure she has a notebook. Keep notes on appointments, treatments and moods. I would also write down the CBC blood test results for RBC, WBC HgB & platelets even though my Dr gave me a printout. Trying to keep all of the printouts in the book made it too bulky so I kept them in a folder at home. She should use it to write down anything she wants to keep note of. 

In the back of the notebook I started a list of the Drs, phone, address, emails, etc. Leave a couple of pages open for this. You never know how many medical people may be involved. After that I list web sites along with my id/password. These were for paitent access to hospital portals, oncologist portals  and what I felt were key web sites (like this one). I ended up with a page that was a summary of the dates I had chemo, full blood (not CBC), scans and any other tests. Sometime my oncologist would ask me when the last scan was because I could find it faster in my notebook than she could in their computer system. (It was new so she was still learning it.)

I finished my Rituxan maintenance last Oct and only see my oncologist every 4 months now but still update my notebook every so often. (Like when I had the flu a few weeks ago.) Never know what kind of info may be useful.

 

 

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