I started writing this blog to share my journey. To have a safe place to unload when I was feeling sad or lonely or overwhelmed. And it's funny, but during the day I do pretty well, but late at night when I'm on the computer, then the tears start. I let myself think about the uncertainty of the future, where the money will come to pay for Mr. B's medications, how will I cope as his health gets worse...plus many more things. I know these same things weigh heavy on Mr. B's mind too. Last night he was the one crying about the cost of his blood thinner and I was the one encouraging him not to think about it right now. I said that we would find a way to pay for it and that it was necessary for him to live right now. Without the heparin, he could easily die from blood clots. I'm just thankful that the medication is helping him to feel better. My hope is that he can return to a better quality of life soon or at least start to do some of the things he enjoyed doing like taking his "grand dog" out for a daily walk. No, we don't own a dog, but our daughter does and Mr. B used to stop over at noon and take her out for a walk while "mom and dad" were at work. She's the sweetest dog and she has a way of making you feel good. I know that it would be so good for him to be able to take her for walks again.
And so I will need to make some hard decisions in the next month or so. It could mean that I will need to start looking for a full time job again to help pay for the medication. But I don't want Mr. B to get wind of that. I know how much it will upset him that I'm thinking of going back to work. He will feel responsible and I don't want that to happen.
When I was looking for a photo to attach to this blog, I did a search for pictures of rain to describe how I was feeling. And yet the picture I picked was this one and it didn't make me feel sad, but rather made me feel good inside. Crazy, huh?
Mr. B emptied the dishwasher tonight. Yep, you heard me right. I'll say it again just in case you missed it the first time. Mr. B emptied the dishwasher tonight. For some of you that might not seem like much of a feat, but Mr. B has basically done nothing except sit in his easy chair since about January 5. He has been in constant pain, from multiple locations in his back, ribs, shoulders, etc.
Today we actually ventured out of the condo to go somewhere other than one of his chemo treatments or doctor appointments. He felt good enough that he wanted to go out. Hallelujah!!! I was concerned that it might be too soon, but who am I to stop him? AND since our car had not been used for about 3 weeks, we discovered that the battery had gone dead and one tire was pretty low. But Mr. B jumped to action. I got the portable power thinga madooie (sorry, I have no idea what it's called. It's some kind of portable power device) out of the trunk. He hooked it up the the battery and started the car. She purred like a kitten. Then on to inflate the tire with a portable device that plugs into the car. We were on our way! We stopped at two stores for groceries and then had a quiet supper at Wendy's. When we got home, I think Mr. B had tired himself out so he sat down for a little while in his easy chair. Then I noticed he was hauling out his laundry hamper and preceded to start washing his clothes! From there, he started emptying the dishwasher. I finally had to reel him in and suggested that he take it easy and not overdo it. All I kept thinking was, "And this isn't even a Dex day! Wow!". I think he was just so overjoyed that he was feeling better that he wanted to do some of the basic things that he has been avoiding. It felt good to see him look so happy emptying the dishwasher. I hope the novelty doesn't wear off too soon. :-)
And in other good news, when we got home there was a message on our voice mail that we would be getting a phone call from our new doctor. It looks like our request to change doctors has been approved. Yippee!!
Well, the storm has passed and calm waters are upon us again. Or at least I sure hope they are. Mr. B went for his chemo treatment today, the first one of his second cycle. He seems to be feeling much better than he did for any of the previous 4 treatments. The chemo nurse asked him if he was feeling better since starting on the Velcade. She said that many of the patients do. Mr. B and I looked at each other and said that he felt much better before he ever started on any treatments because he wasn't even aware that he had MM. Anyway, now we are looking ahead and are hopeful that the treatments will help him enough so that he can have a break from them. My daughter and I have the dandelion root all ready to go when that day comes. :-)
Mr. B is also a pro already at injecting the heparin. It's amazing how one thing like that can make such a difference in how he feels. And to think we could have lost him if one of those blood blots had lodged in the wrong place. The doctor described Mr. B's condition as very serious. I'm just glad that we took him to the hospital when we did. Another day or even a few hours later, things might have turned out different.
But for now, we'll bask in the calm waters and enjoy the scenery. And take time to smell the roses. *g*
Thunderstorms. I've always liked them believe it or not. But only when I'm safe inside. On the days when I took the bus and had to walk in a storm holding an umbrella, well....those days I felt very afraid. For the past week, I've been through an incredibly emotional thunderstorm. It started last Thursday....
Tonight I really needed something to make me laugh. This picture from someone on Facebook did just that for me. The squirrel totally reminded me of Howie Mandel. He's a Canadian comedian and he's also a judge on America's Got Talent. Love that guy! :-)
I've just completed this book by Dawn White. On Friday we discovered that Cancer Care had a resource library for patients and their families. Imagine that? It only took us 5 weeks to even know it existed. Sheesh!! We walked out of there with our arms loaded with reading material. :-)
This book is written by a woman from Manitoba who's husband was diagnosed with Multiple Myeloma and how they learned to navigate the Manitoba Healthcare System. I could totally relate to so much of what she wrote and it gave me the courage to stand fast in asking for a different doctor.
I would encourage anyone that is going through a health crisis to read this book. Dawn offers so many good suggestions to help patients and their caregivers during their journey.
It's only 2 pm and I already feel like I've gone through a full day. This morning I had a bit of a scare. Well, it was more than a bit of a scare, it was a LOT of a scare! We had an appointment at Cancer Care with a counselor and our volunteer driver was picking us up at 8:05 am. Just as I was putting my shoes on, I heard a loud crash and Mr. B started crying out in pain. All I could do was run to where he was while saying, "oh no, oh no, oh no". I think I was afraid because of the condition his bones are in and if he might have broken something. I found him on the floor in my office sitting on his butt. I did the 20 questions to find out what and where he was hurting and what level his pain was at. Then I ran to the living room to find the card I had for the on call oncologist. It took me a few minutes to find it I think because I was starting to panic a little. And I wasn't sure if I should even move him. After some mix up about which on call doctor should call me back, it was determined that Mr. B's own hematologist was in the building and she called me back after a few minutes. Well, she was no help at all. She said that we should go to his regular doctor or go to the emergency department. Then she said that I shouldn't call this number but rather just go to the emergency department for any future issues. I was dumbfounded. When we had a consult with the radiology nurses, they told us the exact opposite. They said to talk to the on call oncologist before we go to emergency because many issues can be resolved after talking with the doctor. She didn't even want to see him even though we were going to be at Cancer Care anyway and she was also there today. We've decided to ask for another doctor. Need I say more?
So today I did something that I had been putting off for about 6 months. I had some bothersome skin tags in my armpits that I continually nicked with the razor when I shaved. It seemed like every time I booked the appointment, something would come up and I would have to reschedule it. The last time appointment I had booked ended up being Mr. B's first chemo treatment and I had to cancel two days before the appointment. I'm sure this clinic was REALLY impressed with me. So I hopped on bus and made my way downtown by myself.
On Tuesday Mr. B offered to drive me but I politely refused. Well, not really so politely. I said,"Not while you are still taking breakthrough morphine!". Turns out he wasn't in any shape to drive today anyway. He was in quite a bit of pain again last night and today so his mood wasn't very good. And yes, I do have my driver's licence but I really hate to drive. I mean, REALLY HATE TO DRIVE. It causes me all sorts of anxieties just thinking about it. So I took the bus and grabbed a taxi to come home. I had a new client that was dropping his paperwork off and I didn't want to take a chance on being late if I went home by bus.
While I was waiting for the taxi, it really hit me. My life will never be the same again. I better get used to doing things by myself. I read so many other blogs and the patient is still doing things like working and poor Mr. B can hardly even walk to the bedroom. We only leave our condo for Mr. B's treatments, blood tests and doctor appointments. I'm starting to get cabin fever. :-( I'm trying not to get discouraged that he just doesn't seem to be improving much. I know he's pretty discouraged about the way he feels.
For the next two weeks I'll be working 3 days each week out of the home. It's just some temporary employment but it will help out with our finances. Plus it will get me out to the land of the living. I'm looking forward to that. Hopefully I don't spend all I make in the stores downtown.
Today was a dex day. Know how I knew? Well as soon as I walked into the livingroom and even before I could say good morning to Mr. B, he announced that today was a dex day. Was he trying to warn me? LOL Think about a hyper active child times 10. That's the best way to describe Mr. B when he's taking that medication. Makes me wonder what the heck it does to a person. And tonight while he's watching basketball, I'm sure he's going to drum the arms of his chair into the condo below. I'm just glad that the basketball players can't hear him
Today we flushed Nitro down the toilet. We think he died some time yesterday. I hope he is in fish heaven. :-(