***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. ***
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.
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,
2012 at10:48 PM
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,
(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*)