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Just another newbie - frightened spouse

oldcaliforniagirl
Posts: 5
Joined: Jul 2015

Hi all,

Where to start? My husband has lymphoma.

They are still narrowing it down, 2nd look by 2nd pathology lab still in the works, but my husband pretty definitely has some variant of b cell non hodgkin's lymphoma.  Actual treatment is probably 3 weeks to a month away I'm going to guess, meanwhile other tests, appointments, etc. 

I'm trying to be brave, but I really am not. 

For background, I'm sixty and my husband seventy something.  We are retired, and could have moved pretty much anywhere.  (Well, not Bermuda or the Caymans, but there were a lot of options.)  So, finally last fall, we moved to a rural area on the west coast about 200 miles from where I grew up.  Love it here, but we don't yet have a network of friends, just know a few neighbors so far, joined the local senior center but, one thing and another, put off getting involved. 

Anyway, while this is a wonderful place to live, heath care access can be a problem.  I knew that, my husband seems to have a health crisis about once a year, and still I encouraged my husband to move here -- I feel pretty guilty about that at this point.  Anyway, after multiple attemps since last summer, with two local clinics, we still didn't have a primary physician/nurse practioner either one of us could count on.

Then, maybe a month or so ago, my husband started growing weak and, eventually, he got to where he was spending a significant amount of the day sleeping.  I knew in my heart he was dying; this was clearly something serious.  And, he wouldn't try and get help -- although neither of us was sure exactly where we were going to find that help, to be honest, other than the local hospitals.  Finally, he consented to just presenting himself at the closest ER.  That worked.  After a week in the hospital, he had a preliminary diagnosis and an oncologist I think we can work with.

The problem is, I'm really not sure he is going to make it through even the next month.  He's losing weight, his kidneys are not working, his calcium levels are high, and he has anemia.  He is very weak and is growing frailer at an alarming rate -- it just seems like it's already gone too far.  I mean, how is he going to start chemo with bad kidneys? 

It still feels like he is dying and, like I said, I'm trying to be brave but I am just so terrified he won't even make it to treatment.  And that fear could be justified.

I honestly don't know what I expect from posting here.  I guess I already talked to pertty much everyone in my life that I'm going to talk to about this and needed to tell the story again for some reason.  I guess I'm just wallowing in my fear pretty much. 

Sometimes, I buck up, honest, and I'm functioning and doing the caretaker stuff most the time, but I'm finding it hard to deal with the emotional side of this.

oldcaliforniagirl

 

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hi oldcaliforniagirl,

I am 71 and had large b cell lymphoma in 2012 and am now NED (no evidence of disease).

The situation is hard when such a disease strikes you or your family.

The only advice I can give to you is to stay strong and deal with the practical issues. 

Good luck!

Sten

alihamilton's picture
alihamilton
Posts: 348
Joined: Jan 2004

You are going through such a difficult time! It is good to express your fears and concerns and we are here to listen and advise where possible. I can tell you from experience it is much harder being the caregiver than being the patient. You feel so much responsibility in making your loved one better or, at least, more comfortable.  But you can only do your best. Are you able to access the oncologist to find out if your husband can tolerate the chemo? And maybe to share your fears with him or her? It is very important to look after yourself too. Try to get a good nights sleep. Eat well, even if you do not feel like it. Twelve years ago, my husband was very ill with advanced bowel cancer but he is here today! We are often stronger than we know. Do keep us updated. 

lindary's picture
lindary
Posts: 711
Joined: Mar 2015

OldCaliforniaGirl

About 10 years ago my brother-in-law was told he had small cell lung cancer, very advanced and it had matastasized. No surprise since he was a smoker and used to kid about cigarettes would kill him one day. He spent most of his last 6 months living at our house. He couldn't walk up the stairs to get to his apt. He was tired most of the time. The last month or so we would take the wheelchair with when we went to a place where there was a lot of walking. He slipped away at the age of 42 in the bed at our house, almost exactly 6 months from the day he was told about the cancer. 

During the time he was with us we tried to do things that wouldn't put too much strain on him yet he could enjoy. Sometimes it was jsut a simple cookout with out kids and my brother-in-law's roommate. My husband and another brother took him to his dr appt. I never went with because I just didn't want to be pulled into all of the medical stuff. We just tried to keep things positive. The emotional side is a roller coaster. Some days aren't too bad and other days you want to crawl into a cave and not come out. For me I could go to work and forget for a while. 

I know there is a huge difference between having a brother-in-law who was dying and having a spouse who is possibly dying. All you can do is keep your self healthy. Physically - sleep the best you can and do eat regulary. You can't help your husband if you get sick. Mentally - do the best you can. For him protein drinks and nutritional drinks can really help. I had them every day and believe me when I say, somedays they were all I had because I just didn't feel like eating anything solid. 

Good luck and I'll be praying for both of you. 

Max Former Hodg...
Posts: 3705
Joined: May 2012

California,

While your situation is a sad and stressful one, I applaud your clarity of thought and awareness of the "bigger picture." Your introduction is very beautifully written.  Many of the regulars at this Board live in northern California and other parts of the Northwest, so you may find someone in your region who can share practical information regarding health care privately via the e-mails here at CSN (I myself live in the Southeastern US).

Your husband's oncologist will assess his ability to undergo chemo.  In particular, he will have lung and heart function tests.  The STAGE of the disease (how widespreads or far along it is) will also be a factor.  There may well be work-arounds for the anemia and kidney function issues.

In most cases, Lymphoma is among the most treatable of all cancer types. USUALLY even late-stage disease is not a death sentence, even for somewhat older patients.  I hope that the additional testiing shows that he is ok for treatment with a good prognosis for improvement.  Your fears are understandable and common, although not every spouse is as honest in admitting to worrying that their soulmate might indeed be taken by this horrible disease,

max

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

For the best and don't give up.  My father was just the same way a little over a year ago.  Your words pulled on my heart strings but happily he is still here.  

You both are in my prayers.

Hang in there, you're amazing.

illead's picture
illead
Posts: 875
Joined: Aug 2012

I am so sorry to be late at writing, but you have been on my mind.  I too am an Old CA Girl, in fact born and raised here, as is my husband.  We live in Yuba City, north of Sacramento. We have a lot in common.  My husband and I are both 66 and he was diagnosed with Mantle Cell Lymphoma July '11.  I know how scared and upset your are.  Shortly after his diagnosis, he made a dramatic decline in a matter of days.  Of course prior to that he had lost weight, etc., but he went from practically normal to barely walking or talking.  His bone marrow was 90% cancer, so his blood counts were very low, so he was in a very dangerous position.  He did not have the kidney issues however,  I cannot comment about that but hopefully it is related to the lymphoma and can be dealt with during his treatment.  There is so much that oncologists know nowadays with cancer and chemo etc.  I am sure your husband is in good hands.  He or she will know how to handle this or will confer with others.  I thought for sure my husband was dying as his symptoms were full bore and with lymphoma, that can be very intense.  Like you, I was brave on the surface but really just wanted to crawl in a hole and never come out.  My hope is that things are settling down and you are able to breathe a little.  Because of my husband's low blood counts, his doctor was concerned about the toll chemo would take on his kidneys he was hydrated dailythrough IVs for about a week before his chemo and continuing after.  He was also given only 1/2 dose of chemo the first time and 3/4 after that, so I am sure your husband's onc will take the necessary precautions and perhaps he can get his kidneys functioning enough to deal with the chemo.  I know you must be praying, and especially for the doctors, they are the ones who really need them.  I hope you have good support from family and friends.  We are here for you and willing to listen.  We know the roller coaster of emotions that one feels, so don't feel you have to hold back.  As Max said, you can personal message me or anyone else through the forum.  Just click on our picture and you will see a prompt to send a message.

We all care,

Becky

 

oldcaliforniagirl
Posts: 5
Joined: Jul 2015

Thank you for your replies.  It does help to hear from others, I wasn't sure it would.

We're still hanging in.  Definitely some days are better than others.  We see the oncologist Friday and I'm guessing my husband will be scheduled to recieve a port next week.  He's still losing weight and won't eat or drink enough. 

Guess we'll know more soon.

 

 

 

tall floridian's picture
tall floridian
Posts: 95
Joined: Dec 2011

I am a 73 year old male who was told in 2011 that I had 4th stage lymphoma. I immediately went on chemo and with the help of an awesome doctor and RN nurse I fought this disease with prayer and with confidence in my doctors. Today I am in remission thank God- I eat healthy,exercize,and think positive thoughts always. I remember the words of my oncologist "this disease is very treatable even at your age and stage".

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