I have updated my blog’s appearance to better reflect where I am in life. The header picture is of Kananaskis country in Alberta Canada. It is where my mom and two of my sister’s ashes are spread. Mountains are a place for where I go to replenish my spiritual energy. I really miss the mountains and what they would do for me. Canambehr is a user name I use – it represents my dual citizenship and my love of polar bears.
Going to try real hard to get this post done and keep it coherent.
I feel like I have fallen into a hole and I am just waiting to hit the bottom only it doesn’t seem to be coming. I just keep falling.
Yesterday the surgeon came in and gave us some very tough choices. We could continue with the surgery with the extra risks of the blood clots, say no to the surgery and try ccnu chemo with only a 13% chance of it being helpful. We immediately chose the surgery. There was still a chance that he couldn’t do it. So my wife and I had a hard talk. We talked about the third option. The one where we say enough is enough and do nothing further. It was hard and there were a lot of tears but that became our second choice. Luckily after hematology came by surgery remained an option and that is moving forward on Monday. After surgery she will enter an immunology study and get the one that ends in a 1. Hopefully that goes well because it is the end of the line for her. She can’t handle much more of this. She will probably have to have a transfusion before surgery because her hemoglobin is back down to 8.
So today started out not so good with the 10 min focal seizure. The weakness on her right side is now very noticeable in her face too. Her talking has declined. It took quite a bit for her to tell me she wanted another blanket. She kept telling me “cover all over” and I kept saying “you are covered all over”. It took a bit and a few deep breaths but we got there. I now have to feed her and she has to use a bedpan. The feeding is mainly because she can’t bend her left arm because of the IV, though I think I would still be doing it since she is right handed. This is the stuff that makes me feel like I maybe getting a glimpse into the future when the end is near. She has been putting up with a lot because they only have her left arm for the IV, blood pressure, and to draw all labs from which are happening every six hours.
Today did have a positive though. Her mom and 3 of her sisters came to visit. It was short but nice. Her sisters were visibly upset when they left. It is hard for them to see another sister like this. They lost their baby sister to retinoblastoma at the age of 11, she was born with it.
Tomorrow should be good, daughter and granddaughter are planning on visiting. She will bring me my meds so that will make things better for me.
In all of this it did not help that she had a roommate that would scream for help or the nurse. They finally moved her to a different room last night. She just got another one a bit ago. So far all is quite.
Thank you for taking a walk with me.
So I am writing this entry on my phone while sitting next to my wife’s hospital bed
Morning started out well enough. Waiting to hear from doctors. Well we heard from the NO’s office and they wanted us to come in today to discuss the trials for after the laser ablation surgery. Ok and appt set for 2 pm. Then I mentioned that I didn’t take her to the ER yesterday because I was waiting to hear from them. So they said they will call me back and they did. Needed to be there at 1 to have a Doppler done on her right arm to confirm blood clots are causing her swelling and coldness. So at about 10:30 I am scrambling to get us ready to go, had to call surgeon’s office to get name for check for surgery, had to gas up, get us some lunch, and stop at her mom’s to pickup the check (she is about 20 mins from us). During all of this I also get a call from the surgeon’s office to give instructions for the surgery Monday morning. Keep in mind that it is an hour drive to the NO’s and then need time to park and get to office. We got to the Doppler appointment 15 mins late and without any speeding tickets (lucky on that one).
So as expected she has a dvt in her upper arm. They are not supposed to let us leave until they talk to her doctor. Well they can’t find her doc but since we are heading there any ways they let us go. We get up there and the guy who does the trial stuff comes out and said he was just waiting to talk with her NO and then he would come talk with us. So wife has to go to bathroom so we go take care of that. We get back and settle in for the wait. My cell goes off and it is her NO’s nurse. We are to go over to the hospital they are admitting her because of the blood clots. They admitted her under the surgeon’s care. So she is on a heparin drip, being closely monitored because of her bleeding issues, and will be here till after the surgery. Her weakness has gotten bad enough that I now have to have a nurse help me get her on the commode. So it is probably a good thing we are here till surgery day.
She did good though and stayed out of the hospital for two months 😊. And the best part of all of this is that it is my 55th birthday tomorrow 😊.
Thank you for taking this long walk with me.
I am combining two days because by the time we got home last night I was just to damn tired to do this. I am not doing much better tonight but I need to keep this going.
So on day 31 (yesterday) we headed to Center for Advanced Medicine in St Louis, MO at 1:30 pm. We got back home at about 10 pm. At 3:30 was Laurie’s preop assessment. They needed a urine sample and she could not do it. We were at preop for about 2 hours and they finally just gave us the stuff and told us to just give it to any nurse and they would know what to do with it. So by this time Laurie was hunger so we head across the street (me pushing one of their wheelchairs) and have dinner at Applebees. After that we head on over to the hospital to have her special MRI done (scheduled for 8 pm). We get there and register and sit and wait a bit. I then hear one of them talking to someone about Laurie’s IVC filter. A little bit later the lady takes us back to talk to us. She informs us that the MRI they will be doing is twice as strong as a regular MRI (it is a 3T MRI) and the IVC filter has not been tested for that strength. She informs us that the surgeon is going to make her have it anyway so we agree to it and she is told to let them know if anything doesn’t feel right. We are lucky and most of the people doing the MRI have done her previous ones and know us. We are so grateful that they let me sit beside her during it. I am able to put my hand on her leg and it helps to keep her calm. Before leaving we tried for the urine sample again and managed to get one – not the quite the midstream they wanted but she got it done.
So during this whole day Laurie’s right side weakness is getting worse. We are back to me having to help her in the bathroom, cut her food, help her up, etc. I am noticing that her right arm is kind of just hanging there. When we get home she can no longer manage the walker and we are back to using the transfer chair. So we got home and she went to bed and I stayed up and watched a movie to decompress. I ended up not taking my sleep meds because I have to be able to wake up and help her to the commode at night now as she can’t stand on her own. To be honest I am not sure what the positive was for the day other then getting another day together.
Day 32 has been one of those days where I can’t even remember things that well. Called the NO and let them know about the right side weakness getting worse, especially her right hand. To make it short there were many calls back and forth, they wanted me to take her to our primary care doc or an ER to see if she has clots in her right arm again. I said if they find them what do they do since she can’t have blood thinners. Was told they would call back – never heard back and I wasn’t going to take her to the ER till I knew the answer (told them that last time she had them they didn’t do anything and said they don’t worry about ones in the arm because they are so small). I am sure the ER would be thrilled with me telling them to look for clots but don’t treat them. Calls back and forth with surgeons office about the payment for the surgery and waiting on a return call from them too. Found out from the NO’s office that the surgery is scheduled for Monday and surgeon’s office said they will call tomorrow morning with all the details. Also the NO wants her to come in tomorrow to get the stuff started for the trial she will start after the surgery (that is how we found out it is on Monday) but never got back with a time for tomorrow. The preop office called and told me that Laurie’s potassium is low and they were letting our primary care doc know and they needed to get her on supplements or off of the lasix. Primary doc office called and they called in some kind of potassium meds (pharmacy didn’t have in stock so will be tomorrow) and to call every morning with fasting blood sugars (still working on that). Preop also told us she may have a UTI. Had to start a 5 day skin cleanse that the preop instructed us on. So I had to shower my wife before bed tonight – that was not easy – also had to wash the sheets and make sure we used clean towels and pj’s for her. I have to shower her every night before bed up to the night before surgery.
Laurie is so scared that she may not get back the use of her right side. She asked me if she would and I had to tell her I didn’t know. I didn’t know if the surgery would help that, make it worse, or no change at all. We also don’t know how her speech will end up. Right now she is having a lot of difficulty and I am figuring out how to help her without upsetting her. My mind is numb from all that is going on.
So positives for today have been son number two and grandson doing a sleepover, seeing youngest daughter. Hearing that the surgery is on Monday. Having another day together.
Thank you for walking with me.
First day off of the steroids and to sum it up, Laurie was in bed by 7 pm.
It was a hell of a day for her. I did not give her any insulin today and glad I didn’t since every time I checked her blood sugar she was in the low 100s. It was like she was fasting all day. Her temp was going up and down all day between her normal of 97.8 and 99.8. She just didn’t feel well which wasn’t surprising considering her blood sugar. Just after 7 she made a noise (her back was to me as I was in the kitchen) so I went over to check on her and she was crying. The right side pain she gets around or over her eye was the worse it has ever been. When it subsided a bit she said she wanted to go to bed. So I helped my wife to bed at just past 7 when she usually doesn’t go to bed till after 9. I had to wake her up at 8:30 to give her meds and boost. Now I am uneasy about taking my sleep meds because they knock me out for 4 hours. Normally I wouldn’t and would just make up the rest later but we have her preop assessment and special MRI tomorrow and will be gone for 11 or 12 hours. The one is at 3:30 and the other isn’t till 8 and we live an hour away so we will be staying there till both are done. It is going to be a very long day and with her not feeling well it is going to be a challenge for sure.
For those who may think I am nuts for saying we will be out of the house all day – it doesn’t mean the house will be empty all day :).
Positives for the day all revolve around the phone. We talked with Laurie’s mom and that is always a pleasure (seriously it is). I facetimed with my daughter who lives in Canada (that is where I am from hence the nickname can(adian)am(erican)behr). Laurie heard from her 3rd son who asked about visiting tomorrow but obliviously can’t. The nurse from the NO’s office returned my call and said her labs from Thursday looked good. I always find that amusing since when I look at them there are a lot of results in red that are either higher or lower then the norm. Laurie just finished her 3rd cycle of Temador on Saturday so that is not helping how she is feeling either.
Well time to try and wrap my head around sleeping.
Thank you for walking with me today.
I would like to just cheat and say hi and go to bed. This way I at least did a post for today right. Oh well I am not a cheater so …
Today was a pretty quiet, even keel day. Laurie used the main bathroom, without the commode, all day today. That was a very big positive for her. I was able to tickle her neck and make her laugh today, so we both got to laugh :). We did some cuddling this afternoon. I did a little bit of work in my office – still sorting and organizing stuff. Got the bubbles out and played with that with our Yorkie and cat for a bit.
On the flip side of things Laurie did not feel right all day. Two hours after breakfast she started to feel jittery so I checked her blood sugar. It was the same as her fasting was (in the 80s). So I gave her a glucose tablet to get it back up and some cheese to keep it from crashing again. I called and left a message with our primary care doc that this happened and that I will not be giving her any insulin in the morning till I hear from them since tomorrow she will not be getting any steroids. Her sugars stayed below 200 no matter when I checked them today. At least none of the usual stuff was worse today – her speech, her balance, right side weakness, headaches or pain. She just may have made it through coming off steroids – knock on wood. The end of this day also marks her making it through 2 months in a row of not ending up in the hospital and no seizures – again knock on wood.
So comes to an end a fairly decent day.
Thank you for walking and talking with me tonight.
I have made 28 posts in a row. I believe that is a record for me :).
It has been a very long day. I am exhausted and I didn’t even do anything.
Today was her last chemo day for her 3rd cycle. It was also her 2nd day on only 1 mg of steroids. So far she is doing well. She had right side pain in her head (she doesn’t always refer to them as headaches) off and on today. Her speech was pretty bad. It frustrates her when she has trouble talking but will be ok if it gets worse after the surgery – I called her on that one.
Positives for the day – youngest son was here working on his jeep all day. Laurie did some latch hook, tried to color. I stayed off the phone and the computer most of the evening and dosed a bit. I gave our yorkie a haircut. Made a fried chicken that was actually pretty decent. I am sure there were more positives but that is all my head can come up with.
Thank you for taking an evening stroll with me.
Today was a pretty good day. It was Laurie’s first day on only 1mg of steroids and her 4th day of chemo. Second oldest son stopped by for a short visit first thing in the morning. We went to Walmart and she was able to use the motorized cart (instead of me pushing her around in a wheelchair). When we got home she did the stairs one after the other instead of one at a time – this is a huge step for her. She did a little writing by hand, not on the computer. We bought some knitting needles for her to give a try at. I got her the biggest ones since that seems to help calm the tremors. I also bought a pair for me and did some knitting tonight.
So knock on wood that she seems pretty stable considering she is being weaned off of the steroids in a matter of 6 days. The swelling in her feet are noticeable less so that is very good. While I am feeling good about things I am also not letting my guard down. Things can change on a dime with this damn disease.
Thank you for joining me for this very short stroll and may your weekend be filled with sunshine and laughs.
A nice quiet, calm day today. Youngest son came over to do his laundry and work a bit on his jeep. He then convinced his sister to come over with her daughter, he loves his niece. They both stayed for dinner, pulled pork sandwich. Laurie sat in her office for a bit today and wrote a short blog. She also sorted the dirty laundry into two piles. Her headaches came and went, not lasting for very long. The home health nurse came to do Laurie’s weekly blood draw. I did not care for this one at all. It almost felt like we were an inconvenience for her. She did not even fill out the blood work form and leave a copy with us. I really hope it made it to the lab ok. Laurie is getting fatigued from the chemo and her speech is still declining but otherwise she is doing pretty good.
If Laurie is up to it I plan on taking her out to Ihop for breakfast in the morning, she deserves it. Time to head to bed and get some extra sleep.
Thank you for taking this short stroll with me.
Up super early today and lots happened so exhausted and brain dead. Hope I can do this post justice.
So yesterday I just wanted to be able to close my eyes and not open them again until this roller coaster ride was done. Well today I would like to just blow this friggin roller coaster into tiny pieces. We had a 9 am appointment with the surgeon this morning. He told us that there is concern that it is tumor recurrence, yet my wife’s NO office told us yesterday that the tumor board said it was from the radiation. He said that he needs to do the surgery as soon as possible because size is an issue. If it gets too big he would not be able to do the laser surgery. He went through all the risks, some of which my wife is at higher risk for. Told us how this surgery would wipe the slate clean and set the clock back 6 to 8 months. He explained that there is no cure of course, and all they can do is kick the can forward. He went out and called the NO to see about the temador cycle she just started yesterday and came back and said that was ok. So it was all agreed upon that she would get the surgery. Awesome news right, till they came back in and explained that Medicare does not cover this. That we would have to come up with $9000 before the surgery. Might as well have been 9 million dollars for two people on disability. I didn’t care and told them to go ahead and we would come up with it somehow. There was no way I was not going to get my wife this surgery. I won’t go into details but she is going to have the surgery.
So now we are at home waiting on phone calls. Her NO calls me directly to discuss moving forward with the surgery. She is hard to understand in person and even harder to understand on the phone. The jest of it is that she wants to talk with us before the surgery about which trial my wife will enter after the surgery. I guess going into a trial after the surgery is all part of it. She mentioned one type of drug and immunotherapy. Both are administered by IV so that presents its own problems with my wife since she hates IVs to the point of getting very upset. I am leary about the immunotherapy because of how sensitive my wife is and the problems she already has had. But that is a bridge to cross when we see her NO. So the next call comes from the surgeon’s office. She is scheduled for an MRI on Tues Jan 31st, it is a special one that will map her speech (one of the higher then normal risks for her) and her preop screening (we will get there for the screening at 3 pm and the MRI is at 8 pm). Once the surgeon reads the MRI he will schedule the surgery. The surgery should be done by Feb 20th. They want to wait for her to do some healing after her chemo cycle ends this Saturday. So I am happy to hear that everything is moving forward quickly in my opinion. However, my wife does not think this is quick enough and is upset about it (thank you dex and keppra). She is scared that the tumor will grow too big before they can operate. I tell her that when he looks at the MRI he will know how much time he has. Now lets add to this mix that Sunday will be her last dose of steroids. She needs to be off them before the surgery because having been on them since July last year makes her prone to longer healing time. So she has swelling going on and they are taking her off steroids over 6 days. I am hoping like crazy nothing goes wrong with this.
So today emotions have been all over the place. I have been dealing with doc appt, looking for ways to finance this, phone calls, her best friend who is the queen of denial right now, telling the kids, and last but not least an emotional wife who at first thought the surgery would never happen then was upset because it isn’t happening fast enough for her (and that is ok Babe, you have every right to feel like this).
And that folks is why I want to blow the friggin roller coaster into tiny pieces.
Thank you for taking this walk with me.
The best part of this day was seeing our daughter and granddaughter. My wife got to spend about 3 hours with just them. I believe it did her spirit good. There is a lot to talk about with regards to my wife and her journey, but it must wait till tomorrow.
For about the last week or so I have been washing our dishes by hand. I know there are many of you without dishwashers not seeing the tragedy in that. It really hasn’t been a big deal except on days where my energy is super low, like today. We do have a dishwasher just didn’t have the soap. Dish soap is a lot cheaper then dishwasher soap. Today I took one look at the counters and sink full of dishes and said “to hell with it” and I got dishwasher soap. I just did not have it in me to do them by hand tonight. So as I sit here writing this I am being serenaded by the dishwasher.
Lately my wife and I have been trying to find something to laugh about each day, not always an easy task. At least not until I discovered Siri. Tonight while my wife was getting ready for bed I started asking Siri all sorts of questions. The answers had us laughing like crazy. It is now my favorite source of amusement. I also use it to send texts while driving. I know no texting while driving. It is not something I do as a habit and I don’t actually type. Siri allows for it to be hands free. I just talk and she sends. So if you have an Iphone and haven’t checked Siri out yet, do it , you won’t regret it.
Thank you for taking a stroll with me tonight.