***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. ***
Email to Paul’s Dr.’s
Monday, May 14, 2012 9:17 PM
Hello Dr XXXX,
Paul and I are home and we are taking things day by day. Trying some natural remedies and hoping for a miracle!
Two things concern me… He has had blood in his urine. Just light pink… But it’s there.
And secondly, tonight he got really light headed and his knees buckled. He said today was a good day and nothing like this happened, while he was alone.
Not sure if it’s a phase? But he has never not showered a day in his life… Today is day two of him staying in his pajamas… I am thinking he is too weak? He is eating, but isn’t really strong on his feet… He seems better after lunch, but worse at night.
They are tapering him off the steroid, this makes me wonder if he has more swelling in his brain to create the light headed(ness)? There is no fever, no pain, and no new symptoms. I am concerned…and just wanted to bring it to your attention. There is a new VA clinic in Cadillac, do you think it’s wise to take him in for a check up?
Response from Dr.
May 15, 2012
I apologize for not getting back to you sooner. It appears that Paul may be better and more comfortable at home. However, I will ask Dr. XXXX to call you tonight and check up on how things are going.
Email from Paul’s other Dr.
May 16, 2012
Last night I spoke with your husband. We discussed his upcoming appointments, and his decision to pursue complimentary medicine approaches in addition to his medical care through the VA. He didn’t report any specific complaints over the phone, and we would be happy to visit with you or him in the future if you have any concerns.
Regarding the blood in his urine, it may be helpful to see his local primary care physician, who could order testing on the urine to evaluate further. If he passes blood clots in the urine, or if he becomes unable to urinate or has lower abdominal/pelvic pain, we would recommend that he be seen in an emergency room. Otherwise, it would be fine to wait until you are able to get an appointment with his primary care physician.
Please feel free to let us know if we can be of any other assistance.
**I received a few choice words from Paul on this… **
His Dr. called and spoke to him- asked how things were? Of course, Paul answered “fine.” He didn’t mention the blood or the other symptoms. He told him he was done with the poison and that he was trying to treat his illness with homeopathic remedies.
** As I look back on these email updates- I realize how naive I was to the disease, and how much havoc it was creating in his body. I am glad we were exactly the way we were with this. I wouldn’t have traded the time and the lessons for anything. (Except for a cure… for that- I would’ve tried anything.)**
Continued email conversations with Paul’s Dr.’s – Same day.
Email from me to his Dr.
Wednesday, May 16, 2012 1:30 PM
They are admitting him here in Saginaw VA.
Sent from my iPad
May 17. 2012
Thank you for letting us know. I’m sorry to hear that he is unwell. If we can be of any assistance to you or the admitting team at the Saginaw VA, please let us know.
May 17, 2012
I am sitting in Saginaw at the VA Hospital. They admitted Paul from the ER earlier today. It’s 6:48 pm, and I am not sure if I will stay in Saginaw tonight or head home. I know I need to go and get him clean clothes- so I am thinking of just heading home soon…
They have him on a catheter and morphine right now. The drug is to help stop the muscle spasms and the catheter is to flush his bladder.
As you may recall in the last email, he had blood in his urine. Well- it got to the point that he could barely relieve himself and the blood was bright red. He kept saying he was in no pain, but he sounded like there was. He said it was “just pressure”. Said it felt likes weird tickle when it came out… but didn’t really hurt. Well since he has had a second catheter… And no spasms… He realizes what he was experiencing was pain. Just didn’t know how to describe it.
The Urologist came and did the second cath. They didn’t read the order real well in the ER, so he inserted the correct one to flush him out. Ouch. It’s a triple lead that can administer fluids in and flush them back out. The Dr. said as soon as it’s clear… he can go home.
He started to feel symptoms that resembled a bladder or urinary tract infection last night. I gave him some cranberry juice and some drops from the natural food store called APS drops. Literally means all-purpose solution. They will help bladder or urinary issues. This morning it wasn’t better, and he was up every ten minutes last night trying to relieve himself…. Made for a sleepless night for us both… But at least I got a few z’s. He barely got any.
I got up this morning and showered and got him ready and we headed down the road for Saginaw. We got ten minutes from home and he was already feeling like he had to go… I won’t bore you with the details of the trip… we made it and went directly to the emergency room.
***Side note: We got a few miles down the road- and Paul asked me to pull over… I did. He leaned against the car and started moaning while trying to relieve himself. Anyone who has had a UTI knows this pressure/pain. He kept moaning and hopped back in. I told him that it would be impossible to stop the car once we got on the expressway. I dumped the coffee out of my new mug and he used it to hold the urine/blood. We stopped at the gas station on M115 just before you get on US 10… I was so nervous about him walking into the store alone. I was afraid he would fall. Pass out or pee all over someone on his way… I stayed in the car. I don’t really know how it turned out in the store… But he made it.
I showed the contents of the mug to Nurses at the Hospital once we got there- and then threw the mug away.***
Thursday Morning 6:12 am
I left around 7:00ish from the hospital and drove home. Thank God for good friends, kids and a cell phone. I spoke to several people and purged all the crap that was in my head… stopped at a friend’s in Dighton to update her- then came home and crashed. I am not sure if anyone else has this… but when I have an emotional day… crying and trying to stay in control… I am exhausted. I had a good night’s sleep and will head back to Saginaw in a little bit.
Okay- here’s what I was told last night by the Dr.’s who saw Paul. The first one in the ER said that when a person does radiation- they become susceptible to membranes becoming thin and possibly even bleeding. A person may have unusual bleeding in their mouth- or other thin skin areas… such as his urethra. He felt that it was bleeding and clotting and preventing him from being able to fully empty his bladder. He felt that administering a catheter would help with the pressure- and he also gave him a dose of morphine to help with the spasms.
The urologist looked at the tests- and spoke (consult) with the ER MD on the phone… he wanted him admitted and to begin an irrigation catheter immediately. So- they ordered a special type to do this. One nurse said she didn’t have that kind in her supplies and would need to order it. I left the room. Came back when they were done and watched the bloody fluids fill the bag. I was amazed at how backed up his bladder must have been… because at this point- he was not on any type of IV or fluids.
They wheeled him to a room- and I took his clothes down to the car. When I came back the nurse was still doing an intake evaluation, and was asking him questions… when he realized I was back- he just motioned with his nose to me.
I think secretly he likes me as his advocate… I answered the questions- they took all of his vitals and gave him his meds for the day. At this point- it was about 3 and he hadn’t had anything to eat or any meds. Well- this room was too hot. Something was going on with the heat… it felt like a sauna… so they moved him across the hall. He is in a double room by himself.
About an hour later the Urologist came in and he looked at the catheter and said it was the wrong one- they had removed it and began another.
He told us that he felt that it was the cancer. He also said it would be easier to treat him, if it was the cancer…. I disagree. The Pet Scan didn’t show any spots on his bladder. AND- They told us in Ann Arbor that it wasn’t “treatable” per say… so what could he possibly be thinking as a treatment if it has moved?
This is just another frustration when dealing with the medical teams in the VA system. Every single Dr. that comes in the room- wants to tell you their opinion… and although they each have access to his records- none of them has read his file. None.
I feel like I have had to educate each one… every day. The VA claims to have a new system in place- it’s state of the art…Any changes made to his file- by anyone in the system- no matter what location- they can all see it… they are just being lazy.
Another reason for every patient to have someone to answer questions and to keep things in order. An advocate… I feel that nobody outside of the medical field should have to know this stuff… and most days I have to make sure he is getting the correct dosages and meds on time. I am sorry for the rant… it was just a frustrating day.
I think the ER MD is right. Let’s pray. So in talking to my friend on the way home- who is a nurse… she asked a few very good questions- such as… how do they control or stop the bleeding from reoccurring once he goes home? Will he be on an irrigation catheter at home too? And the Dr. in the ER said something about home nursing… when will that begin? I have to hop in the shower now and head back… I have a busy day ahead.
Please continue to pray for strength for my Marine… he has lost another ten pounds… they weighed him in at 157 last night. He needs to gain some weight and get his fighting boots on to kick this… I am still believing… and I know you are too.
Peace and Love,