Newbie with very little support

Sal0101

Miralax

Oh! Miralax and Claritin were My best friends!! 

CritterMamaLori

Nellie4579 said:

Fear of needles

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 set

Best of luck to you!

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.

CritterMamaLori

Sal0101 said:

Miralax

Oh! Miralax and Claritin were My best friends!! 

My boss won't let me turn in my key...

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.

CritterMamaLori

Rexmax said:

We are here

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!!!

I truly understand

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

Brings another question to my mind

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

Evarista

CritterMamaLori said:

Tips duly noted!

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. 

:-)

Pets...

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. 

OO7

CritterMamaLori said:

I made it

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. 

Amen to that

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!

Max Former Hodgkins Stage 3

CritterMamaLori said:

My boss won't let me turn in my key...

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.

Job

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

Sal0101 said:

Miralax

Oh! Miralax and Claritin were My best friends!! 

Miralax Question...

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.

CritterMamaLori

Max Former Hodgkins Stage 3 said:

Job

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

Only one treatment so far

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! :-)

lindary

CritterMama

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

Hi Crittermama

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

Port installed

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

New supporting husband

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. 

CritterMamaLori

Education has been good and bad

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. 

Evarista

What I appreciated

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

And

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

Evarista said:

And

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. 

Support

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

Thanks for the help guys

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

notebook

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.