Newbie with very little support

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. 

:-)

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. 

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.

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

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! 

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. 

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 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. 

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

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.