"Sue Saddened Wife" Continuation Thread 2

Kuku:

What's with the stats course? For what course of study?

Mel

Just got back from Emerge (1.00 am). Urine flow blocked and so a catheter put in. The guy nurse was fabulous and so was the doc. After telling us that the diarrhea and inability to urinate could be due to spinal nerve involvement, it turns out he has a UTI. I am wondering if the diarrhea is due to the same, although the spinal nerve thing is more likely (and awful). Ugh!

Antonia; that is not fun! We have had to do the same for Dave on a few occasions. The only good thing for Don he won't need to go through the night and a more restful sleep? Dave could use a good night with a catheter up and going 4-5 times a night . Did they put him on a antibiotic for the UTI? Hopefully once things clear up Don will feel better.
Dave was just a bit better yesterday, not nearly as much pain as the day before .Our kids came yesterday for my B/D and we were able to go out for lunch. I wasn't sure if we would be able to . The fatique is crazy right now and every time I look at him he is sleeping. .It makes me feel tired looking at him. Today he will be able to nap for 3 hours and he so needs that!
We have a oncology apt on Wed as well as hemotologist so anxious for Psa testing as Dave has been on zytiga for 2 weeks. Hoping to see a drop of some sort!
Well hoping everyone here has a good week.. Hope everything sorts its self out for Don
Hugs 💙💙 XOXO Sue

Good Morning Everyone.  It sure sounds like you are having long nights with all the complications from the cancer. It helps to read your experiences and be able to think "o that is what I will do if that happens". It reads like we are all having problems with our husbands having low blood counts, fitigue and not eating well. I had the weekend off work and it was good, Steve felt like he wanted to get out and he eat everything that was put in front of him and no sickness. It is a two edge sword as he felt better but it is because we did not do any more chemo so no side effects.  It is like when someone says how is Steve?  He had a good day and feels good but the cancer has spread and is growing rapidly. Most only want to hear about the day and not the whole picture. Hope we all can have good days. Carol

Chickadee- how did Don do today?

Here is the calculator for correction of calcium for low albumin levels. I can't remember I actually remembered it right.

http://www.pharmacologyweekly.com/app/medical-calculators/calcium-correction-albumin-calculator

Paul had labs today. So far only H&H back and slightly more anemic but still not horrible- just a downward trend of concern, esp with oral surgery coming up. H&H was 12.6 & 38.1. He is pale and looks like crap, and not being able to do so much lately. Liver function came back- all within normal which is a good thing. I hate this waiting game.....I bet the rest will result just when I am trying to get to bed (that one last look).....

Doc put him on trazodone for sleep, which I think will help. I hope.. Weight gain from it would be welcome. Strangely we thought he had been on it before but its not anywhere....

Regarding medication prices.... My daughter got some today... Went to pick up and it was nearly $90.... Almost peed... Talked to pharmacy and if she gets 2x20 mg it will be $20 otherwise for 1xx40 mg tab its almost $90!! So please if you are on a tight budget please keep an eye on things like this. I know the doc will be fine with her taking the cheaper dose since they are equal.... That's my PSA for the day. (seems weird to write that and not mean a number!).

Hugs to all... I see and feel all the hard stuff you are facing and sending strength in all of you.

No word from anyone lately.....

Hello everyone. Krissy thanks so much for that calculator. We get the blood tests again Wednesday.

We were not able to get The Treatment today as Don was just beat. I think it is the infection. Also, he didn't have his baseline LDH levels and this is how we know if The Treatment is working. It seems to be working for a few others but one guy (colon) is not responding well at the moment. We will be getting it tomorrow at 10 am. Then again Thurs and Fri and then orally at the weekend and then I have to learn to do the IV myself. Don is also very nauseous due to this awful antibiotic he is on so, of course, he doesn't want to eat much even though I have given him an antinauseant. One strange thing (and I am touching wood as I type this). The Treatment requires that ibuprofen not be taken. I planned on switching to Tylenol 3s as paracetamol helps the treatment along. Well, I forgot to give it for three days and not a peep out of him so I asked how the back and knee pain were and he said, "Great. Not felt much at all." Hmm...

I am glad Q is hanging in there and doing OK on the Ra 223. Thanks for letting us know, Susan.

I somehow missed that is was Sue's birthday, so blessings for the year ahead and may all your dreams (especially the one we all understand) come true.

Hugs to all. xx

Post Edited (Moonlitnight) : 7/13/2015 8:33:10 PM (GMT-6)

Yes I totally agree I would want to see before you sign on the dotted line. Glad the room mates uncles a lawyer and I would let them know that in every conversation that takes place. I would be worried if you can't get ahold of them before , yup there will definitely be a run around if anything is wrong.Create a paper trail and keep every peice of paper. Is there any way of finding out if they are legit owners that have the authority to lease out properties? Don't send money as a down payment on rent till you actually verify what you are getting. A lot of snow birds from around here lease condos and apartments down there all all the time . Look under property management companies listed for winter rentals. I know how you feel as you sure don't want her to go and not be in a safe place with out a roof over her head.
Wel we have lots going on tomorrow with appointments , oncology and hematology plus full bloodwork labs. Dave has been on zytiga for just over 2 weeks ..lots of fatigue but not bad other wise. I hope and pray for a downward trend in PSA. .I have my pages of questions ready. I want to know how oncologist arrived at crap prognosis when Dave himself does not feel any worse. I want to know but I hope I can tolerate the awnser.My freind is going to give me thename a drug out of England that her son in law is on with his chemo. This son in law has had stage 4 terminal cancer for over a year from his esophagus down. Just 2 months ago they where wondering if he would make the next day but this has turned his cancer around 360 degrees. Tumours are shrinking like crazy and he feels 85% better. When she gets the name I will post it. Right now she is recouping after surgery for colon cancer yesterday. Thank God it was confined to colon and they are sure they got it all. This is her 3rd battle with cancer. Breast cancer 2 times , double mastectomy. She is 72 , at 70 she asked her GP about needing a colonoscomy and was denied that ...looked whats happened, I applaud Krissy for going into medical if I was half as young as what I am I would love to study to be a Dr.i know I would never treat cancer patients lightly, I would never not screen for treatable disease .Sometimes all it takes to get better care is someone asking why not? I think we are entitled to the best care and modern medicine that there is . Not one person here ever asked to be placed in cancers way. I still do not think there ever should be money standing in the way of getting drugs . They have to be there for every one when they need them!
Well early to bed on the road for 7am . Dave cannot drive at all because of the fatigue and dizzy feeling. Thats ok by me , I love driving. Well be thinking of you all , I hope the next few days go better for every one .Hi to Quincy and Connie💙 So glad the xofigio is working for you,...darn fatique though for all of us.Take care every one Love Sue💙💙💙 XOXO

I am only a nurse but strive to be the best I can be.... Maybe a higher education will allow me someday to actually make needed changes to healthcare. Hey if Florence Nightingale can do it then maybe I can, too.... Never dream too big.

Reality is Paul needs more of my time, and very unhappy I am spending so much on homework. I am already starting to feel the stress of it and feeling its creating this huge wedge. I go to work, work hard- work on stuff for us for lunch- his referrals, his dental, my kids move, my homework or application process for school- doing labs for me, paying bills.... Then come home to someone who has me walking on eggshells, who doesn't tell me he isn't feeling well until he is so sick he needs to be in the hospital, to deal with that and more of the same I did at lunch, searching for documents, trying to organize miles of paperwork and find docs I need for this or that, reading about stats, studying stats... until I finally can shut my brain of and get to bed, then hope to sleep without hot flashes waking me, the TV blaring, my acid reflux or GI stuff causing pain...

I am always tired, always stressed lately it seems. No breaks for me but I still keep going.

I shouldn't complain but I need to vent once in a while. I know there will be a day someday where I will have nothing to do and be coming home to an empty house and that breaks my heart and snaps me back into reality real fast.

Is it September yet? I need that vacation.....

Krissy - First I hope some good news will be coming soon about your daughters living situation. That would be helpful for you to have one less worry and daughter to feel comfortable about her move.
Second, Paul needs to level with you regarding how he's feeling - I understand why he keeps that from you but that never ends up well - I think we all have some experience with that! That will be one of those talks that elicits a promise from him to not cause you MORE stress by hiding his health problems from you. Am I just dreaming or is that even possible? Hmmmm....in an ideal world it would be but then again in an ideal world there would be no disease, so there you have it! I hope you fall asleep early and have the best nights sleep you've had in a long time and wake up refreshed and feeling good.

Sue - Best wishes for an enjoyable safe drive and a good report tomorrow. Will be looking for your post. And am very curious about the drug your friend is talking about.

Antonia - I do so wish for relief, no pain, no cancer, a cure for our men, too. Also, if you do get the opportunity to to exercise your middle finger to the doc I would most certainly love a photo of that!

BEST WISHES SUE xx You are a miracle worker in my books. So much passion and intention to keep Dave alive and thriving.

You are ALL miracle workers... Susan, Beth, Carol, Krissy, Sal who worked so hard, and all the women and men who support their partners and dig up strength when none appears to be present.

Don wasn't very good last night. He fades towards the end of the day, won't eat, didn't want a healing (sound, Bengston...) and just wanted to sleep. The Treatment is skipped today in favour of artesunate, VitC and Aminosyn, which cannot be had at the same time. Then once on Thurs and Fri and I do it myself (oral and topical) at the weekend. So much hope can lead to so much disappointment, kind of like falling in love with him 30 years ago and praying every second that it would work out despite exes and kids as he was such a wonderful, kind and dashingly handsome man. That passionate wish worked out and he became (with apologies to Susan) "My man." I pray we are allowed at least two miracles in this lifetime and that all of you are too. xx

Post Edited (Moonlitnight) : 7/15/2015 10:04:52 AM (GMT-6)

Carol. I hear you. So frustrating. You would think in this field there would be more staff, more tolerance and more compassion, wouldn't you? We have met with the most arrogant and useless oncologists on the planet. Going to a witch doctor would likely result in better treatment/results. Rude. Uncaring. Arrogant. Not one whit of caring. Know you're in my thoughts today and I hope something comes up in terms of a good clinical trial. (Grr! on your behalf...)

Hi Gals,
Hope your day is going well and that the guys are having a good day. Carol, so glad to hear that Steve's onc has finally gotten on board and getting you back to someone who will do something!
Our guys tend to trust their docs, while us wives ask questions. Our medonc is really very proactive and never gives up, but Gary hates it when I ask him about tx choices and the onc spends time explaining why he doesn't want to do it. For example, TA and others have suggested estrogen patches and I also think degarolix (sp?) Should be considered, but Dr says no. So Gary gets p.o.'d that we are talking when he just wants his tx and outta there. We all want what's best for our hubby, but never quite know what that is. I am certain that it is not blind trust in medical community. So many of us are where we are because we trusted the docs!
Krissy, you gotta get some decompression time or your gonna be sick again my friend. Please schedule a time for walk or something in to your day. I didn't heed this advice and ended up with RA from stress. Worried for you my dear.
Sue, Susan and Antonia, in my thoughts and prayers..take care.
Sal, Q and Connie too! Hope to hear from you soon.
Beth

Well Psa just in and nothing is going down 3,222.5 from 2,835 taken June 27th. *** ! So not sure what the big kuhona oncologist has planned or obviously is just going to go on for another 5 weeks before next appointment. Yesterday the appointment its self went more optimistic because of the hemoglobin staying at 106 after last Fri 1 unit transfusion. So what do I make of everything now? Well I just got off the phone after practically pleading for bloodwork to be done in 2 weeks for a simple CBC because there was nothing planned for 5 weeks. I question if they have a death wish on us? If inwas a Dr that hemoglobin would be read every single week. I think hemoglobin for Dave to be good needs to be in the 90's not 80' s . The hemotologist had all the # for Dave and Antonia his hemoglobin was at 68 before they transfused the the first time. Why would a Dr let a patient run down so much? It was not even funny just how ill Dave was . If it was me right about now I would quit the whole lot of them!! I would go elsewhere and start all over ! But like we say men don't think the same way ...to much trust or I will say at times to lazy! They just don't question anything and I know Dave only hears what he wants ! The prognosis the dr said 2-4 months Dave hears 4-6 . Yes I was right there! I question every thing and demand more than what I probably should. Lesson learned hard way should have went to complete physical I would have never been told that tests that are not recommended for PSA. That "B" wouldn't get away without doing them.
Well anyone reading have any suggestions for us we are open to anything! We still have jevtana as a back up plan as long as we can stabilize bloodwork. I am not going to say zytiga isn't working but it at this point is questionable. Never In a million years would I have ever dreamed to be living this nightmare of PC. 💙💙💙