"Reply to Dano about my husband & I"

maryaz

This is sort of backwards but I didn't know how to do it. Dano posted in another topic the message quoted below. I wanted to reply but it didn't fit the topic. The timing is good as I wanted to explain about myself anyway.

Hi Dano; We are doing well for now. It is almost normal. My husband was in hospital first part of July with pneumonia or some kind of infection. Treated with IV’s and after he got out he finally started moving forward. Very slowly but forward. He is getting around pretty good. August 16th was 3 months since surgery. Considering all his radiation treatments which they seem to feel slows down the healing, he is doing okay.

Still pain at times. It is the area of the ribs and not the incision. Seems pretty tolerable. He gets around. A big grocery shopping and he uses a scooter but others he walks. Still gets tired. He is getting Vitamin B12 shots monthly. He was anemic. It is better finally. You are right it was really like a tail spin.

You are very observant or maybe others just didn’t ask. I want to know something, I ask. I am ready to tell my story now anyway. I have very severe COPD with about 24% lung function, IF I can still claim that. My biggest problem was that all of this year was stress and depress and things even beyond my husband’s treatment. We are limited for helpers. Since my diagnosis 6 years ago this month, I have attended Pulmonary Rehab twice a week. I could not even workout at home. Just was too much. Just this past Thursday we went back to my rehab. Hopefully I can build up my muscle tone again. My rehab is like another family to us. I don’t get around well as I was last year. It wasn’t good before but better. Don’t want to make this about me but I did want to share this and it does fill in the story better.

When I first came to this board, I didn’t want any of the focus on or about me. That was why I didn’t explain about me. It was awkward sometimes the way I would try to word my posts. I just don’t get around well without my husband’s help or my son and he was only here for month. This did make the treatment harder because my husband and I are each watching out for the other and neither was in too good of shape. Sometimes when he was sick and I was trying to help I felt so bad because I knew he was worrying about me. It was awful some days. We are more thankful for the outcome that we have today, than you could imagine. I thank God for this.

My SIL and my son went with my husband to some appointments. I did go to some but some I couldn’t walk that far. I highly recommend everyone being treated should always ‘try’ to take someone with them. It is hard to remember everything.

Dano; I will be having you and your wife in my thoughts and prayers.

"Hi Mary;
Sorry if I've missed something, but I'd like to know what is happening with your husband, I'm hoping for good news which is hard to find. After reading your husbands medical history, I'm a bit worn out. So many doctors involved, so much confusion. It sounded like they were were really well intentioned but in part by the numerous complications your husband had put you both in a continual tail spin. Something was keeping you from attending your husbands visits, I didn't hear why. At the start I had someone with me for the first three months with a note book to take info, it was a help. A lot of times after the doctor visits my wife and I would talk and clarify what we just heard. I laugh now, but we would line up questions for my Onc and ask them, then after the appointment realize the questions never really got answered. What we believe the reason was we were asking opinions relating to the future, and she had no way to give a truthful answer without sounding bleak. She was too up beat to do it, what I found was her associate Oncologists could answer questions better. I had previous heart problems and still have a blocked artery in my heart but I can manage normal life without problems, once I started on cancer treatment, the cardiologist stayed out of the way, he was posted if and hearts meds were altered and was notified when I had some chest pains that the Onc followed up with an EKG and Ultra sound, sending the info to my cardiologist, which used it on my 6 month check up right afterwards. My Oncs clinic was part of the Queens medical system, all my doctors were a part of it, and all testing procedures. I had reactions to meds and chemo and didn't know which end was up sometimes, I went to the Emergency room once because of the way I was feeling early on with my Oncs advice, just to be disappointed which going there, it seemed unfair to put a doctor in that position when my regular Docs scratch their heads enough on their understanding of what I have and what is next. So I stopped going to emergency rooms for cancer related problems, I learned to calm down and not be so anxious, and help my lovely wife do the same. I learned that my wife could handle certain things and some things not so good. So I had to relate to her in ways to reduce stress as much as possible and laugh about it as much as I can. It seems to help.
Again I am amazed at what you and your hubby have gone through and still holding it together.
God Bless
Dan"
_________________
Mary

Husband is 67 year old Male
NSCLC - Squamous Cell Carcinoma
Chemo and Radiation Treatments together
Allergic reactions to Taxol and Taxotere.
The Story: http://www.cancerforums.net/about9079.html

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1407

((((Mary))))

You strong, brave, and courageous woman! This really tore at my heart to read your condition. How unselfish of you to keep the focus on your husband when your are going through so much yourself. Makes me tear up. Crying or Very sad

I can't even begin to imagine 24% function -- oh how hard this must be. My husband's primary issue was breathing and he was never that low in his function, so I can't begin to think of the difficulty you have just doing the simplest things. Do you use oxygen at all?

I hope that getting back into your pulmonary rehab will give you a little extra strength and function. This is just so sad and I'm sending prayers for some smooth sailing for your husband so you can get your own issues addressed. My husband's mother had severe COPD and it's the pits however you lose your ability to breath. People take breathing for granted until they don't have full capacity. It's very scary.

Never feel like it can't be about YOU too when you visit these boards. The support is for both patients, caregivers, and patient/caregivers in your case. Thanks for sharing and I hope we can be of support for you also.

Good heads-up Dano --- I am so oblivious lately.

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

dano

Hi Mary;
Thanks Mary for the response, it fills in a lot of blanks. I did read your page and learned of your COPD and got educated, so thank you for that. I do want to support you both with fresh prayers, so thank you for sharing.

Thanks PBJ for all of your prayer and support for my self and so many others on the forums.

God Bless
Dan
_________________
54 year old male in Hawaii
Diagnosed Nov. 9,2007 with NSCLC IV
with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08
Currently on chemo treatments every 3 weeks
with Alimta
and taking Lovenox for blood clots
Now back to work full time
http://cancerforums.net/viewtopic.php?t=9993

brainman

I sent an email to all three of you to thank you for all that you do in the Lung Cancer forum. Mary, your story touched my heart.

It must be doubly hard for you to not be able to go with your husband to his appointments. I know how much that meant to me so I can imagine how much it would mean to you. I had to call on the help of relative strangers for rides (45 miles each way) to my weekly radiation treatments.

My mother had asthma causing her to have problems breathing. I know that COPD is different in many was but in one very significant way the two are very much alike... trouble breathing... feeling like you cannot breath. My mother used to describe it as having a plastic bag over her head.

My heart, thought, and prayers go out to you and your husband.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

maryaz

This will be another long one but once I explain myself I should be done. Gosh, I am not sure where to start here. It was too late for me to get here yesterday. Sometimes I lose my place. Dano, I don’t think I had yet told you that I read your story. That is quite a journey you are on Dano. You must be very observant. It is so hard in writing to describe things. My COPD is very severe stage but sounds probably worse than it is.

Pbj: A lot of this is so that you better understand what my life is like. It may be better than you picture. My breathing might be different than your husband struggled with. If I am sitting with you, I am fine. If I talk too long, meaning a lot, it will drain on me. I don't talk in broken sentences. There are other things. I need to really go slow.

If I was talking to you on the phone, you would not know I was sick. If I was sitting and talk with you, it would take you a while to know that I was sick, except that I do use o2 (oxygen). My biggest problem is that I cannot walk too far without my saturation going too low. I get around my house and into some places. I go to target and grocery store and use a scooter. I was walking in Walgreens with a store basket. o2 does not really help me that much with the SOB. Everyone is different. I have to have it to keep my saturation levels up.

I just write this so you don’t think I am worse than I am. How much worse can you be. Rolling Eyes

There again is stages and numbers. There are people getting around better than me with lower numbers or ones that cannot get around with high lung function numbers. I got around much better before this year. I have to get built back up.

My muscles have gotten very de-conditioned during this year. Up until then I worked out regularly. Maybe not a lot but I walked the TM for 20 minutes at rehab @ 1.6 to 1.8 mph and then ergometer and Nustep, weights, etc. I got up to 36 minutes one time at home but cannot get there now. Now you have an idea more who I am, I think. There are a lot of people worse off than I am. I was trying to reach 40 minutes and still would like to but don't know if I can. I will keep trying.

PBJ; I just did whatever I could to help my husband. It was limited it is what you do for someone you love. Just like you but not able to do as much. Sometimes, you just do what you have to do. My husband was wonderful when I got sick. When I went down with the COPD that I didn’t really know what it was then, I could not do anything for myself after about 2 weeks on the ventilator, including feeding myself or anything. You could not have asked for a better caregiver than I had. It broke my heart that I couldn’t help him more. I had no idea my husband could or would do the things he did for me. Neither of us had ever experienced anything like this.

I have been about the same since about 18 months after I got out of the hospital. If you do the things that you should like quit smoking, eat right, learn about the disease, exercise and avoid flu, etc then you can more efficiently process the o2 you breath. Whereas if I had continued to smoke, I would probably not lasted a year. It is more than just smoking, as with cancer, but with COPD, for sure it often plays a big part. Most the people that smoke do not get COPD but most the people who get COPD were smokers. Cool

A lot has been happening since I was dx'd in 2002 and word is slowly getting out to help people with COPD.

My husband did most things and the sad part was how he got us all set up with what we needed before he could not do it. Then my youngest son came and helped and did the same. My 93 year old Mother lives with us. She is probably the healthiest one in the house. She has bad eye sight and after pains from shingles back in 2000. We did all right with the times we were alone. Lot of TV dinners but that was fine.

I understand about the board and support for both of us. I just wanted it about Joe when I was first learning. I belong to COPD message boards and I just wanted to leave my condition out for a while.

Brainman; I had wished I could go to all appointments with my husband. Sometimes Joe would push me in somewhere with a wheelchair and he could no longer do that. Usually my husband’s sister or my youngest son would go with him. My son was here from out of State three times. The last time was about 5 weeks I think. We were both more comfortable when it was my son. SIL is fine though.

The day after my husband got out of the hospital I went to the dentist with what I thought was a bite problem. Turned out it was a root canal. My dentist was sending me to a specialist to have it done. He was making the appointment and as they were going to tell me 1:30 pm, I was telling them, not 1:30 pm because my husband has a doctor appointment. My son was the driver. Told dentist to call him in and figure out what to do. I was in pain. Here we had my son and still had to call my SIL (she works and lives about 30 miles from us) so each could take one of us. Like I needed a root canal. Rolling Eyes

We took pain meds together for a week. How is that for togetherness. Smile

Bad timing!

I thank God for where my husband is at today. I know that it was by God's Grace that I survived and I am very thankful, but sometimes you just have to wonder about the timing, and asking what else am I suppose to be learning.

Brainman; I cannot imagine driving so far for treatments when you are feeling so sick. Must be awful somedays. I got your email and I will be replying but again I am up a little too late. I will post this and answer you tomorrow.
_________________
Mary

Husband is 67 year old Male
NSCLC - Squamous Cell Carcinoma
Chemo and Radiation Treatments together
Allergic reactions to Taxol and Taxotere.
The Story: http://www.cancerforums.net/about9079.html

dano

Hi Mary;
I am very short on words to describe my feelings for what you've gone through, I'm glad to know, It gives me more to pray for. I had thought you might have had a job conflict that kept you away from the visits. I can see you have done all that you can in your situation and then some. Now we are able to care and support the both of you. Thanks for all your teaching me, I'm learning a lot from you.
God Bless
Dan
_________________
54 year old male in Hawaii
Diagnosed Nov. 9,2007 with NSCLC IV
with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08
Currently on chemo treatments every 3 weeks
with Alimta
and taking Lovenox for blood clots
Now back to work full time
http://cancerforums.net/viewtopic.php?t=9993

koikkeril · Super Moderator Joined: 29 Jul 2007 Posts: 334

Hi Mary...
I have just read up....WOW! Can't imagine !

Its really sad hearing about your condition as if you don't have enough to worry about on top of everything you are unable to make all the visits with your husband..That is so sad for you!

I see that most things have already been said... So I will be praying more than ever for help for you and your COPD..You are a hero woman!

Thinking of you both...God Bless...Koik
_________________
Husband diagnosed with stage 1V NSCLC Febuary 2007.....Lost his battle August 27th 2008 but lives on in my heart.

dano

Hi Mary;
I just found out my Dad has COPD he is 88, his younger sister has it too. I just spent 2 weeks with him on trip back to the east coast visiting family, when he got back he went to the hospital for pneumonia, when he got out he had to go on oxygen full time for the first time at home. I'm thinking that I was heading the same way ( having COPD ), only I have the lung cancer on top of it. Boy, I wonder what the future will bring? Hope my heart disease doesn't kill me first, lol. Three years ago heart disease was my only real problem! Oh well, I'll likely die from choking on a hot dog first.
God Bless
Dan
_________________
54 year old male in Hawaii
Diagnosed Nov. 9,2007 with NSCLC IV
with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08
Currently on chemo treatments every 3 weeks
with Alimta
and taking Lovenox for blood clots
Now back to work full time
http://cancerforums.net/viewtopic.php?t=9993

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