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Posted

Hi all,

I wanted to post a further update on Kurt.

He has been on Navelbine - reduced dosage and bi-weekly instead of weekly.

He has been wheezing and congested, but with a dry cough.

Oct 9th - high fever and chills. I took him to ER - High BlP - kidney function worsening. ER docs say xray shows pneumonia in left lung - cancer in right lung- admit him to hospital. He was given antibiotics and O2 to help with breathing.

Oct 10- fever gone - his onc does not think he has pneumonia, that fever is cancer related - x-ray shows growth in tumor.

Oct 11 - Hemoglobin dropped to 7.1 - he received 2 units of blood. Blood pressure down to 150/96...discharged from hospital.

Oct 19th- Office visit with onc - creatinine 3.3 gfr- 20.

Oncologist wants him to start dialysis as soon as possible so he can be more aggressive in fighting the cancer.

We saw his nephrologist yesterday and he agreed that Kurt would need to start dialysis. He thinks the function is worse than the bloodwork is showing - based on the amount of muscle mass that Kurt has. He wants a 24 hour urine collection to verify the kidney function to get approval for dialysis.

He was scheduled to get a ct scan on Oct 13th. The oncologist had us postpone it - until when I am not sure.

He has not had a scan (petscan at the time) since mid July. I think the reasoning is - he can't do anything about the

cancer until his kidney function is resolved.

We seem to always be in a "wait" mode and the anxiety is maddening. I so wish that there were simple answers to

guide us. He always has like to be difficult though.(Not really, but he likes to think of himself as a curmudgeon)

Sue

Posted

Hi Sue,

I have been following Kurts progress through your posts,I can really feel your frustration from about 3000 miles away.Its just as well he is a bit of a character,in helping you to keep calm.I send you my best wishes,for my lack of any alternatives to help you more,please know you and Kurt are not alone in your trials.I am hoping the kidney problem will be promptly resolved, to allow the onchologist,to develope his treatment plan.Hang in there,dont let things get you down,we are all here cheering on the sidelines.Keep us in touch with any developements.

Posted

Eric

Thank you for your kind words and encouragement.

This journey has not been easy - mentally for me and physically for Kurt. He tends to leave the research and people dealing up to me. We worry in private , but he leaves it up to me to try to get the answers. Unfortunately there seems to be no right answers.

We have 4 grandchildren ranging in age from 20 years to 12 months ( 20, 16, 7 & 1). We are blessed that 3 of them live within 1 mile of us. The youngest visits almost daily and he keeps smiles on both of our faces. The oldest is in college in San Francisco and spends 1 week-end a month with us. This has kept us young at heart and very happy.

I have read all your posts and admire you greatly for all the promotional work you have done to increase awareness of lung cancer. You are such an inspiration.

I look forward to your next picture posting- I enjoy them all.

I did see a program on making haggis and that made me wonder a little about you judgment though.

Sue

Posted

Sue, well I commend you for your sense of humor kept through this all! The comment about haggis was hilarious!!!!!!

I just want to encourage you that if the doctor's give you an explanation for something and you don't understand it, make them explain it until you do. You have the right to know. When the Onc postpones the CT scan, make him tell you why so you aren't wondering and coming up with what you think it might be rather than what it actually is.

This cancer journey is an up and down roller coaster ride, very confusing when there are complications (are there ever not complications?). Take care, hang in there, and keep us posted.

Still smiling at the crack to Eric!

Judy in MI

Posted

Hi Sue,

You certainly are on a roller coaster ride...you are doing a tremendous job in taking care of your honey.

Keep the faith, and know that we care and we are always here for you.

I have been here close to 6 years and I know what you are going through in the beginning. It is so scarey.. It seems like it will never end. Just keep doing what you are doing, your husband is lucky to have you.

I also know all hurt you feel when you are alone and it is okay to just let it out.

You are blessed to have such wonderful grandchildren. Kudos to them for being there.

Sending meditation healing prayers his way.

Maryanne

Posted

Hi All and Thank you for your comforting posts.

Kurt had the 24 hr urine test done last week and the results confirmed that his kidney function is worse than the blood tests were showing. His function is now at 14%.

We saw the surgeon this morning and he is scheduled to get catheters put in this Wednesday. They want to start dialysis right away and can't wait for the healing of ports. The catheters are temporary so we will see if they need to add ports later if the kidney does not get any better.

The funny thing is that he is feeling better than he has felt in a long, long time. He has a little more energy, no nausea, and his cough is almost gone. Guess being off chemo for a month has done wonders for him (in the short run). I am not sure what the future will be in terms of treatments. I hope he will build up enough strength and healing so he can continue with some treatments.

Sue

Posted

Sue, sorry I missed your earlier post. Be heartened by the fact that in spite of the liver issue, Kurt's feeling better. Not unusual for us to feel better off treatment for awhile and guess that's I good thing. Makes you wonder what the heck you are doing taking it but I found out when I stopped. Now when I'm off awhile like I was recently between treatment, I remind myself that feeling good off treatment means I'm still healthy enough to do treatment!

Hang in there. You are doing great. Keep us posted.

Judy in KW

Posted

Kurt had the catheter put in this morning. We got a call last night from the dialysis center to tell us that he is scheduled for dialysis Thursday(tomorrow) morning at 6:15 am.

His schedule will be every Tuesday, Thursday and Saturday at 6:15 am. The dialysis takes bout 4 hours. UGH.

I spent 30 years getting to work between 5 and 5:30 most days, 6:30 on Saturdays felt like I was getting away with something. You would think that having to get up early 3 days a week would not be a problem. BUT I am not looking forward to it. The center is only about 2 miles from our house so at least we won't have a long drive. After the first time, I won't stay with him. He has gone through this before (21 years ago) so it won't be too many surprises.

We have to work out new diets for him, diabetic and renal dialysis diets are on opposite side of the menu. I guess I should talk to the clinics dietitian to get some pointers. He will not give up milk and that is one big no-no for dialysis. too much phosphorus, so I know we will be fighting each other over his diet. He also needs lots of calories because he is still losing weight. I wish I could give him some of my excess!!!

I am not sure how long he will need to be on dialysis before he can start chemo again. I hope not too long.

Wish us luck.

Sue

Posted

Hi Sue,

Are you implying to all the buddies here that the Haggis is not a game bird?next youll be posting that the Loch Ness Monster is only a myth created by Scots to give a boost to tourism for a poor rural area," Oh ye of little faith"

Posted

I do wish you luck Sue. My getting a man to follow a special diet has not been very successful. However, I did pass on some info recently that he paid attention to and yesterday said it's worked! Amazing. He complains of an excess of phlegm. I recalled outoud that I remember the first thing doctors did when the kids were babies and got a bad cold--cut out the milk because it produces phlegm. He used to drink a big glass in the morning and ice cream at night. He still has his ice cream but cut out drinking milk altogher. Keep us posted on how things go.

Judy in KW

Posted

Hi Sue ... sorry I have missed your postings until now. Wow, it sounds like you have a lot on your plate (and obviously not haggis!-sorry Eric...couldn't resist).

I don't enjoy getting up early either and I can completely empathize with you. Thank goodness the drive is short.

The diet situation sounds like a struggle. Is there something that can replace his much loved milk? Trying to get a man to do something sometimes is next to impossible (at least if he's anything like my stubborn husband) but I am wishing you the best in your quest!

Hope the dialysis went well today and that he will soon be feeling much better and able and ready to tackle treatment once again.

Keeping you both in my thoughts and prayers.

Hugs,

Linda

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