Chapter 26


***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. ***

Paul Update 5.23.12

May 23,2012 10:14 PM

Hello Everyone,

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,

Denise

Paul update 5.25.12

May 25,2012

Hello Everyone,

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,

Denise

Chapter 25

***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. ***

Paul Update 5.18.12

Hello everyone,

Thursday

Today was one of those emotional days… The kind I hate. It’s difficult to feel so helpless. I am here… And can’t do anything. I am here to just be here. He just looked up at me a few minutes ago and said “Sorry honey- that you have to just sit here with me…” I told him there was nowhere else I’d rather be.

The bleeding has not stopped in his bladder. That’s where they are assuming its coming from… Who knows? A Dr. from the palliative care came by today and discussed some things with me.


I have a copy of the Pet Scan that showed where the tumors are located… Evidently, because I cannot read the medical report correctly… I had it wrong… There is a tumor in the kidney area. The wording described a general abdominal area mass and they told me it could cause the blood in any of his organs from the area.


I spoke to the Urologist when I first arrived this morning, he said the radiation is not the cause. He would’ve had to have had radiation in this area and it wouldn’t be seen as a problem for many years later. It is the cancer causing the bleeding.

Friday Morning

He has rested very nicely since he has been in Saginaw. On Weds night he woke up and had some major spasms and the catheter was leaking. He said he didn’t know what to do. He just laid there and finally after a long while- buzzed the nurse.

How horrible… it breaks my heart to know this. He was confused and didn’t know if it was something he had done or if it was his fault. The nurse was super kind, she changed his bedding and got him re-settled. It happened again later in the day on Thursday too. It seems that when there are quite a few bladder spasms it creates an over flow… hence the leakage and the pain.

They started him on new meds for the spasms just before I left last night.

He is in good spirits and his pain in manageable. He is eating good- not great- but at least eating… I have had so many thoughts going through my mind since yesterday. There needs to be a healing center that provides this type of care. Where a person can go and get organic meals, homeopathic care and a fresh start. It would be wonderful to just know I could take him to such a place for three weeks to get on track and then bring him home.

Part of this healthy plan at home will be clean eating. I am not sure if everyone knows what I am talking about… but clean eating is nothing processed or refined. Just whole foods. No meats, no dairy or meat-by-products and no sugars. It’s about giving the body what it-needs- and nothing else. It’s about balance. Do you know how hard that is to make that change? If we could go to a place that prepared his meals and coached us on how to continue this at home… if he had a place where we could do spiritual healing, massage, aromatherapy, exercise and healthy meals…. he could beat this stinking disease.

I am just worried that it’s too late. That is my fear. I know I must not stay in, the fear. I will move from this today. When I stay- it wins.

I can’t help it… I am human. I get caught up in my emotions and my brain aches… my heart hurts… my eyes burn.

The days are starting to run into each other again… I am repeating myself so much that I get confused about who knows what and if I have shared the important stuff with everyone… The Important Stuff?  Wow… isn’t that sad? It’s all important stuff. All of it. Each breathe… each day… I just need him to get strong enough to come home.

The Palliative Dr. gave me some information yesterday, it cleared things up in my mind. They are hoping the bleeding stops with the flushing of his bladder. If it does- there are no guarantees that it won’t begin again. They hope it just stops. They are not even sure where it is bleeding from, exactly.

This is their only option- here- at this hospital. If it doesn’t stop, they will transfer him to Ann Arbor.

As of Weds when he was in the ER- there wasn’t a bed available in Ann Arbor. They are not equipped to do any procedures or to do anymore tests with his bladder or his urethra here in Saginaw. They will be able to make him comfortable and treat his symptoms. IE: Palliative Care.

They will probably move him later today if the bleeding doesn’t stop. I am thinking this, because in the Saginaw VA, there is only one DR. in the entire hospital, all weekend. No specialists… no teams… just one Dr., who rotates all floors and basically- makes no decisions. I only say this because we learned this the last time he got stuck in Saginaw for a weekend… nobody wanted to take responsibility for a decision… so they just kept him there. Nobody wanted to risk anything… so they wouldn’t do anything. I know this is different. He is bleeding… so if it doesn’t stop- they will have to do something. Oh… almost forgot. They gave him two bags of blood yesterday.

His hemoglobin levels were 6.8 and Iwas told that normal was 12. If it goes below 10 they get concerned and want to do transfusions. I am not sure what his levels were before I left- after they gave the blood. They have to wait a full hour before they re-test from the lab.

I am going to the gym for a few hours this morning- to make sure things are okay… and will head back to Saginaw by noon. I am super thankful for my new car… my mileage is super and the car is so comfortable! I think I would’ve opted to stay in Saginaw if I was still driving the big red bus…

Be blessed everyone- and thank you so much for the good thoughts and prayers. God hears us… I am proof. If I didn’t have each of you looking out for me… I would be a basket case by now.

As it is… I am okay. Seriously… I am okay. I have moments… but they pass. I can’t afford to dwell in the negative thoughts or the anger- so if we talk on the phone… please limit the questions and if I sound like I am having a pity party- please help me to get back on track.

Peace and Love,

Denise

PaulUpdate 05.20.12

2012 at10:48 PM

May 20,2012

Hello Everyone,

Paul is still in the Saginaw VA. They are trying to control the bleeding from his bladder- or wherever it is coming from… He has had a few improvements since the last update- his hemoglobin levels came up a day after his transfusion. (But then dipped again today) And the most important change is his platelets are up to normal now.

The Urologist told me on Saturday that because his platelets were so low… he could be bleeding from any area. Normal range is 130,000-200,000. His were 119,000- but now have risen to 139,000. The problem when they are low is that you can bleed from anywhere. Skin, organs, anywhere- you are just really susceptible to bleeding. It’s not uncommon for this type of bleeding. I asked him what the plan was?

I felt that he was just sitting here in a hospital bed- all doped up… and there wasn’t a plan. I felt he was in limbo. He acted a little surprised at my candid statement… but he answered my questions and I thanked him.

It was the most information that I had gotten from them since he was admitted. He said that they had to take certain steps. Each step depended on the last one. He was trying to monitor the bleeding- his hemoglobin and his platelets. While also making sure he was comfortable and not in pain. He needed his platelets to come up- before they could administer meds to stop the bleeding. He has been taking stuff for the spasms- but they are still happening. He is also still passing blood and clots.

They have irrigated for days- took him off- then hooked him back up again. They stopped it again earlier today-thinking it may help improve his hemoglobin levels- and they will test his blood tomorrow to see what his levels are. When they unhooked it- he had a few spasms- felt the need to relieve himself… but couldn’t let it release… the nurse came in and irrigated the catheter and he passed about ten good sized clots. He also was given a new form of morphine- one that is timed release… maybe he will have a certain level of comfort most all day now… if not- he can also ask for a an I.V. dose too.

That’s about it with the news… he has had a few visitors and that has made a world of difference in his mood. Although he is reluctant to answer questions… okay- I’ll be real… he gets Ornery when people ask questions- even towards me.

Stephanie and Chris Burke came – thanks guys… he said when you left… wow- that was really nice of them to come seeme. (What was really nice- was it was just like old times… normal conversation.. not much talk about the tubes and junk going on.) Next came Jennifer and Andrew with the new baby Lydia! She is such a little peanut… she will grow to melt her Bampa’s heart too… I can already see it in his eyes.

Today he had my mom and step dad, my sister Kim and my niece Jalyn… they brought him some good food– today was a bad food day for him. Nothing was going down right… it all felt stuck and not worth chewing… and then came Mellissa and Karen- her bf Mike’s mom…it was a nice day.

The company breaks things up for him…it makes it more tolerable. It’s a nice diversion. I will say this though- an hour to an hour and a half… is about all he can do… when people leave- he is-spent. It’s hard because everyone drives so far to see him… but please know-he sleeps a lot right now to heal his body and to fight the disease.

Oh- and he got to show off his new cueball look- so far… it’s a hit! Everyone loves the shape of his head… and he does look pretty dang good! 🙂

The Dr. said he would probably be here for at least a couple of more days… he originally said he needed the bleeding to stop and run clean for a period of time..  that has yet to happen… so I am sure he will be here until at least Tuesday. Hopefully he can come home for the weekend.

He is not fighting it this time. When he was in Ann Arbor, he just didn’t want to be there… while he has been here… he has been a pretty good patient. His nurses all love him. Broke my heart last night- Sis, his night nurse asked me in the hall… “Does he know how sick he is? I just read his chart… and it’s just not fair- he is too young.” I told her he was aware of how sick he was and that he understood what was going on.

There is also a young male nurse- who is from West Africa- his name is Mikula, and he has been great too. We shared with him our natural treatment plan and he also had a close friend who was just diagnosed and wanted the book for them. He said in his country they grow lemongrass- so I made him an essential oil spray with lemon grass and eucalyptus in it as a mosquito repellent. He loved it… I also brought him some chai tea…He is my new pal. He has borrowed my iPad and read my book- and we had a nice talk about natural healing remedies and how there needs to be more of a balance in Western medicine. We just treat the symptom in Western medicine, not the actual cause. We want to get him home to treat the cause… get rid of the cause.

Okay- it’s storming pretty good here in Dighton… I am going to brush my teeth and hit the bed…

Peace and Love,

Denise

(Will be going to the gym tomorrow morning and headed back to Saginaw in the afternoon. He is in room 2514 if anyone wants to go see him. Building 22- or the Community Living Center- around back of the main building.*Weiss Rd*)

Chapter 24

***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

Paul Henry

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?

Thanks much,
Denise Henry 

Response from Dr.

May 15, 2012

Dear Denise,

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.

XXXX, MD

Email from Paul’s other Dr.

May 16, 2012

Ms. Henry,

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.
Regards,

XXXX, MD

**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.
Paul Henry

Wednesday, May 16, 2012 1:30 PM


They are admitting him here in Saginaw VA.


Sent from my iPad

Paul Henry

May 17. 2012

Ms. Henry,

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.

XXXX, MD

May 17, 2012

Paul Update 5.17.12

Hello everyone,


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,

Denise

Chapter 23

1/20/12 Present Day.

Please stay tuned to the Blog for some major changes. I am committed to finishing this story- the one about my journey with Paul- and when I am done, I promise it will go fast… I am committing to something new. It’s time.

Thanks to everyone for your patience and for supporting my growth.

***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. ***

Mother’s Day 2012 Paul Update

Sun, May 13, 2012 at 9:35 PM

Hello Everyone- and Happy Mother’s Day to all the Mom’s~

We are on the third day of Paul’s new supplements and also introducing a few changes… Going to go slow… I can’t see taking everything away all at once. It’s not fair… he deserves some chocolate milk if he wants at this stage… in a few weeks- hopefully that will not be in our house.

A new eating plan and a plan to starve out the cancer. For those who don’t know… Cancer loves sugar. Loves it… so that will be the first thing that goes… sugar! Next will be processed foods, then we will be on a whole food diet. Paul has been taking a concoction of Flax oil and cottage cheese too- I know… cottage cheese is not “a clean food”… but the book I am reading says that mixed with the flax oil… it changes the makeup, and it doesn’t have any “dairy” left in it. I blend 1/3 C of Barlean’s flax oil with 2/3 C of cottage cheese. I also add about 4 plump strawberries and a handful of blueberries and three packets of Stevia. I have been blending the mixture and he eats that for lunch each day. It’s not bad tasting… it’s thick- like a yogurt would be but it’s filling- and lots of protein too. He still needs a few other supplements- but they didn’t have them in Cadillac- so my friend will pick them up from Oryana in TC.

He is happier since we have started these changes and it’s not poison! It’s a natural approach.

We also just ordered a new water purification system for the counter top… cancer cannot live in alkaline- and the new system will dispense water with that is ph balanced and alkaline between 8-10%.

Anyone who wants to know specifically what supplements… and more about the book- I’d be happy to share. I know there are skeptics… but at this point- what do we have to lose? He has decided against the chemo- and we have to try something to keep him alive. We have to become our own advocates. We must learn how to strengthen his immune system and help him fight.

This morning- he had some blood in his urine… it scared me… I asked him if he had any pain? “Nope.”

I asked him if anything hurt anywhere. “Nope.”

I also made sure he didn’t have a fever… and nothing else was happening… so- this is what I believe. It’s the ugly disease leaving his body. He has been drinking lots of water and is staying hydrated- he says he feels good. If it continues- he said he would call his Dr., but for now- he said he is okay.

If it’s the cancer tearing him up… he is happy- he is home… and we are good. But… like I said- we are believing it’s leaving. (It was just pink.. not bright… it’s a concern… but they would only run tests and say… hey- you have Cancer… duh… )

Well- I was in total denial about Paul losing all of his hair… right up until the moment that I shaved it off for him. It kept coming out in patches. He would leave chunks of hair everywhere… and it looked pretty bad all over his collar. The doctor said the radiation may make some of his hair fall out… and it did.

This morning before I left to spend a few hours with my family for Mother’s day… I buzzed him. When I got home- I shaved it and smoothed it all out! Then I treated him to a head massage… he said- “Man… I’ve got it pretty good- don’t I?” I just smiled. I wish that I had done it a few days ago… besides, he looks cute bald!

Tomorrow I am back to work… I am looking forward to it, but also, a bit scared and sad to leave his side. It has been a few weeks that we have spent each and every second together. This will be new. We must get back to our lives and routine. Paul has decided to retire, and his focus will be on getting better.

I went to the Social Security office on Friday and filed for disability for him. They were super. The gal behind the counter asked me to wait a few minutes… she came back and asked if I could bring a few papers and come back at 2:30? I said sure. Her supervisor wanted to get started on it right away- and sent the claim in that very day.

He said “I see your husband was in the military- can I ask what branch?” I replied- “He is a Marine.” He smiled… and told me that he liked how I answered the question… not- He was in the Marines.. or that he was a Marine.. but- He is a Marine! He is also a Marine, he told me to tell my husband that a Marine was handling this for him, and would see it through.

The good news is that he will get approved. The bad news is that it takes five months. They have a mandatory wait of five months. The date of the claim is the first day of his hospitalization… so In October- he should get his back pay… and begin to receive a monthly check.

Things will be okay.

We have an auctioneer coming on Thursday to sort thru Paul’s things. He wants to lighten the load. There is something healing, something “freeing” about getting rid of stuff. Stuff weighs you down… so we will unload some stuff- and prepare for the worse… but live each day to the fullest.
We are not naive about the prognosis… but we also aren’t going to just sit back and let the disease win… he will fight… and I will be right by his side helping in any way that I can. It’s not going to be easy… but we pledged forever- and we meant it.

Thanks to everyone for the love- please continue to lift him up in prayer and send him love… it is so necessary to beat this. Thanks too for the nice gestures, comments and emails… I am so blessed to have such good friends. I may not get a chance to always write back… but I do read and share each of them with Paul.

Until the next time…


Peace and Love,

Denise