Day 23 of 2017

Today had its ups and downs. Laurie got upset and angry because she could not get her hands to work and do some cross stitch. She was able to do 1/2 a row of latch hook though. So to help her out I gave her some fine motor function therapy to do. I had her transfer cheerios from a plate to a bowl one at a time using her thumb and forefinger. I had her throwing the ball for our dog but not just anywhere, I had her throwing it at the one couch. I then had her put clothes pins on a nail then take them off. She also did some work with her therapy putty. I was able to get her to laugh by first welcoming her to Jackson Rehab :).

I had us both laughing today when I decided to play with Siri on my phone. The answers it comes up with to some pretty weird questions is hysterical. Sorry not appropriate to repeat the question but the answer was “well, I never” :). If you ask it if it has breasts it will tell you “I am not that kind of assistant” :). I ended the day for my wife by asking two of the questions before saying good night to her. She ended her day with a laugh.

We received a really sweet card from my mother-in-law in the mail today. She is always doing stuff like that. Just letting us know she is thinking of us. The second oldest son and his son are spending the night. So we got to enjoy their company. The grandson is always fun. Youngest daughter stopped by to pick up some mail so we got to see her for a bit. It always makes my wife’s day when she gets to see her kids.

As expected we did not hear from the NO about what the next step is. The tumor board met at 4 today to discuss her case. For her sake I hope we hear from them early tomorrow. Waiting is not one of her strengths. Her headaches are starting to be every day and her balance keeps getting worse. I am worried that the tumor is growing quickly like it originally did. The first one went from 3 cm to bigger then a golf ball in 3 days.

So all in all it was not that bad of a day.

Take care everyone.

Day 22 of 2017

Today had a lot of positives and was a very odd day for me. My wife’s youngest son came over to do laundry (a positive getting to see him). We had a good visit as usual. We asked him if he and his older bother had talked any more about moving in together. To our surprise they already have a date set and are looking for apartments. This is wonderful news because it means that the oldest will be moving back to Missouri and will be a lot closer then 2 1/2 hrs away. So during that visit the first odd part of my day came. Out of the blue he asked me if I was going to move back to Canada when his mom was gone (he asked this in front of her). It caught me totally off guard. It is something that has been popping in and out of my head but I have made no decisions either way. Then he showed us an angel wing pendant that holds some of your loved one’s ashes and their birthstone. It is something he is thinking of getting. He took some of her hair when she shaved it off during radiation. My wife got a call from our grandson asking if he and his dad could sleep over tomorrow night. It was a really cute call because you could hear him asking his dad what to say (he will be 8 in Mar).

After lunch my wife’s mother came for a visit – always a positive. She gave my wife a card from the church. Inside it was money that was given to the church at Christmas to give to someone they felt could use it. The church counsel decided my wife was that person. My wife’s family has been members of this church their whole lives. The church members were there helping her mom when her youngest was battling cancer and are there again while my wife battles it. It was a beautiful surprise for my wife. To add to the surprise my mother-in-law told my wife to think of something she really wants to do but can not afford to do. She said she wants to sponsor it for us. So my wife said she wants to go to a murder mystery dinner. We are hoping her mom will join us. I have been to one a very long time ago and they are a blast.

So the rest of the odd part of the day came in the form of a conversation with my wife. It was the kind of conversation that brings tears and it did. We ended up talking about what I might do after she is gone and how she doesn’t want me to be alone. Then she told me that in her gut she believes she will not be here at the end of this year or even Christmas. It is not her giving up in any way, it is just something she feels. Then I told her that I have had the same feeling myself. It is not that we are not staying hopeful or positive it is just a feeling we both have. This then brought up a conversation about God and faith. We don’t usually talk about religion at all. She admitted that her faith has been shaken. We talked about the surgery she may have and that it scared her. What if she doesn’t wake up from it (this relates to leaving me alone). Then the icing on the cake came after we watched a movie and she asked me a question. She asked me what would happen if she didn’t have the surgery. I told her what it would mean and she told me she is going to have it if it is offered and that she just wanted to know what would happen if she didn’t.

I did a few “system checks” with my wife before saying goodnight. I asked her if she had any headaches today – she did. I asked her if she felt her speech was worse, same, or better – same. I asked how her balance was – worse. I had her squeeze my hand and the weakness in her right hand is still very noticeable. I asked her if she wanted to go up 1 mg in the morning on the steroids – nope not yet. The higher dose of lasics seems to be helping and the swelling in her feet seemed to not be as bad, still there though. Unfortunately her blood sugar is on the rise again because of the increase in the steroids. It has gone from in the low 80’s fasting to 120 fasting. If it keeps rising I will have to up her insulin again. Another example of why she does not want to be on steroids or have them go up.

So I am happy that this really positive and odd day is coming to an end.

Thank you for walking with me on this chilly evening.

Day 21 of 2017

Today where we live in Missouri the sun was shinning and the temps got into the 70’s. Today Laurie was able to come with me to the pharmacy and Walmart for some groceries. She did really well so that was a definite positive. I had to take her into the men’s restroom though because the family/handicap restroom was out of order. She can not walk into a restroom on her own – she is in a wheelchair when we are out and about, walker at home. We laughed today so that always makes for a good day. We even did a little bit of cuddling on the couch while watching tv. She managed to do a little cross stitch so that was a positive all her own today. We got to have the windows open all day – love it when we can air the place out.

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A quick selfie before heading into the house.

On the not so positive side the weakness on her right side is worse today. I also noticed that her speech is worse too, no headaches though. I know that she probably needs to go up on her steroids a lot more then she has, but it is her body and her decision. I feel like I am in a catch 22 situation because I take a sleep med that knocks me out for 4 hours and if I don’t take it I get really worn out quickly (my sleep is only 74% efficient with the sleep med and a lot worse without it). I am worried she is going to have another grand mal during the night and I will sleep through it. I am just worried about the swelling causing another midline shift. So the catch 22 is that if I don’t take my meds it will make me worthless and if I do take the meds I may sleep through something happening to her. It just sucks all around.

My wife and I have a wild sense of humor. We love to laugh and love making each other laugh. So today we were in the bathroom and she was looking towards the toilet. I asked her what was wrong or what she was looking at (can’t remember which) and she said she was looking at the light (window above the toilet), my response was – no, not now :). She got it and we both had a good laugh. We both try and find the humor in all of this when we can. We talk about her writing her own obituary (something she wants to do and to make it funny) and we have talked about her doing her own eulogy via a recording of her. We discuss her celebration of life (she does not want a funeral). We know how this will eventually end and we don’t hide from it, what’s the point. So sometimes we make jokes and other times we cry. Please know that we do not make light of anyone else’s struggle with this terrible, life stealing disease. We just choose to look at our struggle with humor sometimes.

Thank you for taking a sunshine filled walk with me today. Rain tomorrow.

Day 20 of 2017

So yesterday was a very short blog. I could not say much about the day because there were people we had to talk to first. Such is the case when it comes to updating about my wife’s condition. We must first let our kids know before I put it up for friends and relatives to see.

So yesterday was my wife’s appointment with her Neuro Oncologist to get the results of the an MRI she had last week. The MRI shows significant swelling and tumor growth. At this time the growth is small and is on the edge of the original tumor field. Her doctor sent it to the tumor board where the surgeons will decide if surgery is the way to go. There is another treatment option that would use a probe to kill the tumor with a laser and then she would get some medicine afterwards. All of this means that the chemo is not working – which is not a surprise considering the variation of the type of tumor she has. They are also considering putting her on a different type of chemo. We should hear Mon or Tues what has been decided and go from there. So that is where things are right now for us.

Today was a better day all around. We got to see our granddaughter and daughter. Laurie’s best friend also stopped by, bringing us KFC for dinner. The evening was filled with a lot of laughter.

So even amidst a storm you can still sometimes find a little shelter and get a break from it. Don’t stop looking for the positive in the day. May this weekend be a good one for you.

Thank you for taking this walk with me.

 

Day 19 of 2017

About all I can say about today is that it was a rainy, foggy day. I have a lot to talk about with regards to today but it has to wait.

There was a positive – a lady sitting next to us at lunch, paid for our lunch. First time that has ever happened. She told the waitress I was being so sweet to Laurie and wanted to pay for our lunch. It was a nice surprise.

Thank you for taking a walk in the rain with me and stay tuned for more on today.

Day 18 of 2017

Today was a very good day and a short one. We have to be on the road tomorrow at 7 am so I have to head to bed a lot earlier then I usually do. It is Laurie’s 2 month NO (Neuro Oncologist) appointment to find out what last weeks 2 month MRI says.

What made it a good day was spending the afternoon with Laurie’s mother. She made us an awesome roast beef lunch and we stayed till after afternoon coffee/tea. It did Laurie good to be out at the farm with her mom. Laurie gets her awesomeness honestly from her mom. She sent some roast beef home with us.

That is all I have for tonight.

Thank you for taking a short stroll with me.

 

Day 17 of 2017

Today was a day of more independence for my wife Laurie. The independence was all her doing. I was in the bathroom getting the shower going and she was by the bed on the commode, or so I thought. I turn the water on, set the temp, etc and stand up, I turn to head out of the bathroom and there is my wife standing in the bathroom. I just about jumped out of my skin. Not only had she managed to get in the bathroom, but she also managed to close the door without me hearing her. She did all this without her walker. So I am trying to keep my heart from jumping out of my chest and she is saying sorry while laughing. Hmm, sorry while laughing kinda makes sorry not seem sincere :). You have to know that I have PTSD from being beaten by my dad from crib to 7 yrs old, so I have a real bad startle response. Also know that I find it all funny :). So the point of that was that she walked without aide of the walker or myself. Just before lunch I ran to the store (to get lunch) and when I came back I noticed a bag of chips on the end table beside her. While I was gone she had gone to the bathroom and gotten the chips. So while her speech is not getting better (possibly worse), more headaches, and just not feeling right, she is working at not needing the walker. The walker is only there to help with her balance so it makes sense that she will need it less as the nerves heal and her legs work better for her.

My mother-in-law called to ask what we wanted for lunch tomorrow. She is actually making us roast beef and baked potatoes. Laurie gets her awesomeness from her :). She raised 8 kids on a farm, with one bathroom :). She has a huge understanding of what we are going through. Laurie’s baby sister was born with retinoblastoma and fought it for 11 yrs.  It should be a good day tomorrow – Laurie needs to get out of the house, and seeing her mom is always a good thing.

It was a good day for me because if what I was told is true our finances will take a turn for the better soon. Living on two disability incomes can be hard enough as it is, but add cancer into the mix and the stress level just goes up.

Well time to head to bed.

Thank you for taking this walk with me.

Day 16 of 2017

There were a few positives today. Laurie (my wife) did use the cane instead of the walker for one of her trips to the bedroom. Her oldest called and we had a nice chat.  My head does not feel so cement like tonight. I can actually think without it hurting.

It is a very short stroll tonight. I was lazy today so I have a few things to do before bed. Thank you for joining me.

 

Day 15 of 2017

The only positive in this day was seeing our grandson for a bit. He was full of energy and being his goofy self. The wife got upset because her tremors kept her from being able to do anything today. My wife gets bored, all the things she likes to do to keep busy have been affected – she can’t read (the steroids have made her cataracts worse), she can’t do needle work because her hands shake too much from the tremors (we are looking at ways to help with that – nothing yet, not even weighted gloves help), she can’t write because the tumor caused aphasia (and that is getting bad again). She can’t spend time on the computer because she has trouble finding her letters and typing. I hate seeing her look so sad and irritated. The rainy day didn’t help matters any either.

Time to put this day to bed.

Thank you for taking this very short walk with me.

Getting ready …

So I am a few steps closer to getting back to my art. I have some of my stuff organized again.

Yes I am OCD and if things are not just right I can’t get started on anything. So I have about another days worth of stuff to do and then I can get to it. My wanting to get back into my art is actually a good sign. It means that I am regaining a bit of my energy.

So stay tuned. 🙂

Thank you for taking this walk on the OCD side with me.