***If you are just joining the blog, you may want to read a few of the previous posts to catch up, this is a healing journey. Its my story, as I walked along side of my husband Paul during his battle with cancer. We began this journey in 2011- these are the emails that I used to keep all of our friends and family in the loop. ***
May 23,2012 10:14 PM
I am just home from Saginaw and Paul is still there. He probably won’t be coming home for a few more days… I hope… but there isn’t much change. In fact- things are different- but not better. There have been better test results… but then other things appear.
I have noticed he has been having more unclear moments, he has repeated himself, insists he is telling you what he “knows” is the situation and then in a few moments later… will say- “Wow… I don’t know what I am talking about.” Those moments are rare… most of the time he insists he knows.
He is also popping up with some off the wall stuff that isn’t a reality. It’s hard to know if he understands what’s happening… or if he is in denial. He will tell the Dr.’s what he thinks- they want to hear.
The Urologist came by today to specifically look at his urine. Because he was telling the nurse that it was normal… and it’s not. There is still blood. The Dr. came and said it now appears to be old blood… but it’s not been clear since he has been there.
The changes are this: He no longer has a catheter, and he had another blood transfusion- two more pints. His hemoglobin levels are back and forth… but are currently above 8. His platelets were normal- but have dropped again. He is still taking pain meds… and is still not urinating without difficulty. Here’s one of those situations where reality and his “knowing” don’t match… You can hear him in the bathroom trying to go… he is straining. He also has to jump up in a hurry and go to the restroom- because the urge comes on strong. Then he has just a small output. When they ask him- He says- It’s okay… and answers “Yes” he is going. (No mention of the straining… no mention of the little output or the instant urge and constant urge.) I am thinking he will need another catheter by tomorrow.
The other change is he no longer on the steroid… they weaned him off that gradually- and his last dose was late last week. Here’s my other concern… is there now brain swelling again? Because his behavior suggests there may be. I let his nurse know what I suspected- they also noticed a few times of him being confused- so they ordered a cat scan. The results weren’t in when I left tonight.
I spoke to a Nurse Practitioner, who was updating me for the Urologists… Her feeling is that there isn’t much more that can be done at this point. I am sorry… but I would like them to try something to find out something… the guessing game is enough to drive me nuts.
She said they have spoken to Ann Arbor- and basically they are of the same opinion…. UGH!! I am so frustrated. I am going to email Dr. XXXX, once I am done with this update… I need them to know where things stand. I told the lady that I felt that they weren’t trying enough… that if they could get this under control… he may have a few more years… this doesn’t have to be his demise.
It seems that they feel that he is terminal,so they aren’t doing everything to get things back on track. I understand that it’s not wise to do certain procedures… I get that… but let’s try something. The irrigation didn’t work. And honestly- I think he is still bleeding. I don’t think it’s just old blood. If it were old blood- then it would have eventually stopped with the irrigation- right?? He would’ve eventually had a clear catheter bag.
Okay… so- all of that being said. I finally hit a wall. It was rough. His mood has been swinging and his fuse is short. Some days are just tougher than others. I got there late on Monday… and he was miffed. It didn’t get better. He insisted he knew the answers to what was going on and was insulted that I didn’t believe him.
His sister and brother in law came… and he started in again… I had to take a time out. I let them visit for a bit… came back- and it hadn’t changed. I guess when I left- he started in on Laura. I left early… I also had a mighty good cry on the way home and decided to not go back on Tuesday. I needed a break and to be refueled. I was exhausted. I can’t be everything to everyone… this just isn’t working.
I had lunch with a great friend- she helped me to redefine my role.
She helped me to set some new boundaries and be safe again. She is amazing… I am forever grateful. I hope everyone has a friend like this… someone who believes in you- unconditionally. Someone who will listen to you cry… whine… snot and mascara… and tell you how beautiful you are.
Sometimes Grace and Peace aren’t ushered in on the wings of a dove… sometimes it skips in over coffee with a few f-bombs. I love you Kitty.
Someday I want to be that friend to someone else in need… She is a great listener. When I doubt if I am able to do the next right thing- she gives me permission to do the best I can. When I doubt if I am capable of making sound choices… she told me I have good character and she believes in me. When I want to be mad… she says it’s okay.
When it was all said and done… I was okay again. I didn’t feel as fragmented… not as pulled. I was able to get re-grounded and re-centered and was ready to go back today.
She reminded me of some important things- Pray and hope for the best… prepare for the worse… and to lose my expectations for each day. Basically- keep living in the day… face it as it comes- and know that I will have what it takes to get thru it.
Jennifer, the babies and Nancy came today- This brightened his mood… then Hailey and Cody visited… and brought me dinner! The stinkin cafeteria closes at 3:30 and the grill closes at 3:00… that’s twice now that I have missed it! (Since I had popcorn for lunch… I didn’t think it was a good idea to have Frito’s for dinner.)
I want to thank you all again for your love and support- the cards- the prayers- the hugs… even the sweaty ones at the gym… the money- gas cards- for mowing the lawn, handling personal paperwork… covering his business, working for me… and the emails ofencouragement. Again- I am not sure if you all realize there are more than100 of you… and just one of me. So- please don’t ask questions or ask me torespond… I just can’t. I may not update as often as you’d like… but it’sthe best I can do… and my friend Kitty says that’s okay! 🙂
Love and Peace,
Well I finally felt like we got some answers yesterday at the Saginaw VA. The original lead Urologist had been gone-to a conference since the second day Paul was admitted last week. He was the one who said he didn’t want him discharged before the catheter was running clear. He said if someone tried to release him… that he was supposed to threaten to call his Congressman. He returned yesterday and saw Paul and gotthe ball back rolling.
Late in the afternoon- he met with Dr XXX and he called the Urology department in Ann Arbor and told a few people of Paul’s case. He also said several times- I need help. He ordered an MRI to be done in Ann Arbor- STAT. They are waiting to transport him to Ann Arbor to do the MRI on his bladder/pelvic area. He will also be admitted there- as soon as they have a bed available.
YEAH!! I cannot begin to tell you how much relief this is… We had a rough morning yesterday. When I got there- there was a Dr. and the Nurse Practitioner, that he doesn’t really like- having a conversation about his status and his care. This is what it felt like to me… they were trying to release him… or convince him of something. Not sure what that was… because- I immediately stopped the conversation and led it back to his present condition and the blood in his urine. She went as far as suggesting that we take him out of Saginaw and just show up in Ann Arbor at the emergency room- and they would have to take him. She kept talking about his “stage four” status… and his adamant decision about not doing ANYMORE treatment. I told her this was not the case. He wanted treatments… just not sure about chemo and radiation.
At this point- we needed to re-visit those decisions, now that he was symptomatic. But- we needed time to process things and to make an educated decision. She kept telling me- he was adamant! I told her it was based on information two weeks ago… not today…. My gut was telling me that I didn’t like the two ladies… but I wasn’t being rude. I listened- then when they left- I cornered the one in the hall and gave her a piece of my mind.
I told her that he was MY HUSBAND- and I had a vested f’ing interest in his care. It was my job- as his wife- to make sure he got the best care. To make sure he understood all of his options and that she was not helping things by asking him questions- when he was not thinking clearly and was drugged up. She said he was very competent and that any judge would deem him competent… that wasn’t my point… but I let it go.
I made sure that he made all of his wishes clear as far as his treatment was concerned. He has also signed an Advanced Directive- stating his wishes with a social worker. He does want to live. He does want to try everything possible… even if that means chemo. When he decided no against the chemo… he had no symptoms. The Dr. kept saying- even if it makes you really really sick and your last days will be spent really sick? UGH…. I can’t begin to tell you how mad I was. Shut up… he doesn’t need you in his face telling him what he will be facing… BECAUSE YOU don’t know. Nobody does.
SO- the good news is he is getting moved to Ann Arbor as soon as they have a bed. He got the catheter back last night to give his bladder a rest… he was going- but not completely emptying it. They started the irrigation back up… and the bleeding is much much less… just pink now… not really dark… might just be old blood clearing itself out. For those who ask- then why not just send him home now? Because the bleeding could start back up at any minute- because of his condition. Once it begins… they really do need to figure out why it was bleeding and the source.
The other good news is they started him back on the steroid for brain swelling- and he seems to be talking sense and is less confused. He is now having vision problems tho.. seems to want to wear his reading glasses all the time.. said he has problems focusing… But hey- with that cute- cue ball and a stylish pair of glasses… that is the least of my concerns.
I am heading to the gym for a few hours-to do some paperwork and let the carpet cleaners in… then I will see if he has moved yet- and head out to be with my hubby.
Keep praying- keep believing… he will get better. Just wait and see. The cancer might eventually take him… but that won’t be soon… he has time… we have time.
Bless you all- Happy Memorial Day Weekend- Thank a Veteran… I am going to go be with mine.
Peace and Love,