I’m going to be doing (finally) the neuropsycological testing on January 8 and after that I will see neurology at the VA here in Colorado Springs on January 23. I’m glad it’s finally time to get this done.
I see my oncologist on January 13 to go over bloodwork that I’ll be getting drawn on January 2.
On February 19 I’ll be having some follow-up work done with the plastic surgeon. Nothing real major, just a short procedure with a very minimal recovery time.
Thanks for all your support!!
I just had a bone density scan and the results show:
“The hip density has decreased a nonsignificant 0.026 g/cm squared. The spine density has decreased a significant 0.138 g/sq cm.” Further, “Low bone mass (osteopenia: T-score between 1.0 and 2.5) at the femoral neck or total hip with a 10-year hip fracture risk 3% or a 10-year major osteoporosis-related fracture risk 20% (i.e., clinical vertebral, hip, forearm, or proximal humerus). This patient does not meet criteria for consideration of pharmacologic treatment to prevent osteoporosis and fracture.”
However, I am taking vitamin D twice per day. Not sure if they will increase the dosage or not. I will update again when I’ve spoken with my oncologist.
I heard back from neurology about driving. It was strongly suggested that I not drive until I see a neurologist, due to my intermittent confusion. My appointment with the neurologist isn’t until August 4. I had thought I could ease back into driving by having Kenn in the passenger seat but a friend pointed out that neither of us would have a quick enough response if something did happen. So, no driving until at least August 4. We’ve made it through 3 months of not driving, we can surely get through 6 more weeks.
In other news, my speech therapy is going well. I like the new approach we’re trying out (my speech therapist moved across the country, so I have a new one).
My fast from social media is in its 4th week and I am noticing how often I reach for my phone to check Facebook. I’m having difficulty replacing that time with something else, mostly because the replacement reading seems like it’s too long for the short amount of time I have available. With Facebook I can scroll for as long as I have time, even just a few minutes here and there. I hope that by the end of this fast (July 10), I will have some new, more desirable things to do with my time.
I saw my oncologist last week. It’s been about 3 months since I last saw her. All my labs came back normal -YAY!! She did say that I’m due for another bone density scan in September. It’ll be interesting to see where my osteopenia is at. I see her again in 4 months and she wants to be able to review the results with me then.
We talked about a lot of stuff (kids, vacation, etc) but what I came away feeling relieved about is that my chance of recurrence is less than 10%, closer to 3%. I’m off Facebook until July 10 but I will look at and answer your comments then. Thanks!
In other news, I am still on seizure precautions until June 24. Theoretically I can drive then but I am still feeling really confused from time to time. I have a call in to neurology for an answer.
Let’s celebrate cancer survivors on Sunday, June 1st
National Cancer Survivors Day 2025
I am so blessed and thankful that I’m a survivor!
I am walking in the Relay for Life of Pueblo on September 6, from 430 – 930 pm. Just a reminder if you haven’t already done so, please send me the names of your loved one’s who have or are fighting cancer. At the Relay for Life in will walk a lap in honor of them. So far, I have 36 people so 36 laps.
Please donate to the American Cancer Society in support of my walk!!
Well, this weekend is going to be somewhat unproductive because I was diagnosed with Covid yesterday. I went to Urgent Care thinking I might have the flu and was concerned about my client’s catching it. They are a very fragile population and I didn’t want to do anything to put them at risk. I was shocked when I got the results back and saw that I was positive for Covid. I got through all these years without catching it and now I have it. Ugh.
The treatment is very different than it used to be. I was encouraged to rest, stay hydrated and stay home for 5 days or until my symptoms are gone and I’m fever free for 24 hours without the help of medication. I hope I’ll feel good enough to go through my emails and spend some time in the craft room. We shall see…
How I got into my current career goes way back to growing up at my Nana’s. She was (wording appropriate for that time) a foster home for handicapped kids. She had several kuds that I remember. Some were deaf, some blind, some both. She had one really special guy named Mikey who had Lowe’s syndrome. He was the best!!
Fast forward many years and I got my bachelor’s degree in human services and my master’s in psychology. I worked for a while at a call center, because I had experience with the medical side of things. But I was not able to get a job in my field because my master’s was too general and didn’t lead to licensure.
Fast forward again and I was at a women’s night at church sitting with a friend and I mentioned that I had gone to school with the speaker, a counselor/ therapist. My friend said, “I didn’t know you were in the field” (psychiatry). I said I wasn’t and told her my story. She decided to introduce me to someone there at church who had launched an agency for working with adults with intellectual and developmental disabilities. I met her, had an interview, took a leap of faith and signed on to become a behavioral counselor. That was three years ago and not only do I love this new career, I believe I was prepared for exactly this time and place
Good news!!!!
I spoke to the neurologist and the RN at the VA this morning and the doctor said that Depakote (the new med) can cause stumbling and falling. Over the last week I have been stumbling and falling much more than before they started the new meds. The doctor said that’s not unusual and he recognized the fact that I had missed those 5 doses right before the seizures. So, when I get home I can take the Depakote out of my pill case!! Yay!!!
Well, my total number of seizures was 2; one in the ER waiting room and another on the gourney in an ER room. I stayed for 2 days and had a bunch of tests run to try and figure out why, after 14 years of being seizure free, I would suddenly have 2 seizures in less than an hours time span.
Well, a little extra context helped. Apparently I had not put my seizure med in my pill holder for an entire week. I had missed a total of 5 doses before I had the seizures.
So now I’m on a higher dose of my main anti-seizure med, and they’ve added a new one. No driving until I’ve been seizure free for 3 months. I haven’t been able to see a neurologist because they are so backed up. I was able, however, to get my meds transferred to the VA, so I won’t run out. I also bought a pill organizer for 4 times a day. I use the extra compartments for my seizure meds only. Hopefully we will catch it sooner if I mess my meds up again.
Like I said, can’t see a neurologist until August 4. So now I just try to adjust to the loss of driving and the increased meds. Interesting thing, I have been falling and stumbling a lot over the past few weeks. I’ll have to research it. As always, thanks for all the support!!
Well, I’m at the emergency room again. Near the end of February I started having some back pain on the left lower side. I am still having the pain and it is increasing. When I sit or lay down for a while, the pain is excruciating when I stand back up. So, I’m getting it checked out.
So far they’ve given me some prednisone and Toradol injection. After a little while they checked on me and the pain was still the same. So they just came in and gave me some Gabapentin. We’ll see if that works.
2 hours later
I’m home now, resting. First they gave me some prednisone and a shot of Toradol. That didn’t help and since the doctor thinks it is sciatica, she gave me some Gabapentin. I had Gabapentin with both surgeries last year and I had no pain, so she thought it would help. It helped a lot! I still hurt but can get up from sitting or laying down with only moderate pain, not excruciating like it was. Plus she wants me to take some Motrin every day and one of the prescriptions is for Norco for breakthrough pain. I sure hope this solves it.
I sent a message to the VA and my oncologist. Kenn will go pick up my prescriptions after the pharmacy opens. Im going to relax and maybe catch up on sleep since I was up at 4:00 am. Thanks all!!!
Sorry I haven’t posted an update like I said I would. I think I have been sleeping better with the O2. Kenn said I am getting up less often. So far, I have been successful in not getting tangled in the supply tubing. Otherwise, we have had to kick the dogs out of the bedroom in order to keep the cats out. We’re pretty sure Gracie would chew the tubing. Luckily, it’s only while we are both gone that we have to keep everyone out of the bedroom.
I’m not crazy about these pictures, but tonight is the first time I have used any heat styling tools on my hair since I lost it in September of last year. Yes, it’s getting long, and yes, I’m planning to let it keep growing until it gets to about chin level, then I’ll try styling it some more.
Mini update on sleep apnea: I need CPAP but that takes up to 4 weeks to get set up and delivered. So, they brought the O2 concentrator for me today and I need to wear it when I’m sleeping. It’s set very low, just to 2 liters per minute. We had been planning to move my dresser around and this was just the push we needed to get it done. It will be interesting to see how it works, if the tubing gets tangled, and if I will sleep better because of it. I will update tomorrow.
I went to urgent care today because my cough was getting worse. The provider still believes it is an exacerbation of my asthma. I got a nebulizer treatment and a prescription for steroids. Should feel better in a couple of days. The frustrating thing is the cough, it sounds terrible, like I’ve got some horribly contagious disease when it’s really just my asthma.
I got a little cough yesterday worsening as the day progressed. About 3 am today, I woke up and couldn’t get back to sleep. Around 5 am I was having a lot of pain with the cough so I decided to go to urgent care when they opened at 8 am. Results?
Flu A just like last February. Two days at home so I don’t give it to my clients, and then wearing a mask for an additional day.
I wonder if this correlates with me not getting the flu shot last fall? Hmmmm…then Kenn reminded me I had a lot going in this past fall, lol.
Had a sleep study last night, in case you haven’t seen that post, here’s the am update…
Well, the sleep study is done. I’ll probably get the the results in about a week. Luckily, the results will post to my app so I don’t have to wait for the doctor to be available.
I had to wear the mask for the entire night. When I first put it on, it was kinda weird but I got used to it. When the O2 started flowing, it felt great. Terrible dry mouth this morning though.
I sincerely hope this gives us some answers.
Well, the speech difficulties have gotten a little better. I grade each day on a scale of 1-3.
1- not many issues, almost normal
2- somewhere in between
3- terrible with lots of difficulty
Mid-December through the start of the New Year was pretty bad with a lot of 3s. Starting off the New Year, mostly 1s and 2s. I see my oncologist on the 21st of this month. I’ll have labwork done the week prior and discuss it at that appointment. My appointment with my primary care provider still hasn’t been rescheduled at the VA.
But, other than that, I’m doing great. I can walk at my usual pace and going up and down the stairs doesn’t leave me winded anymore.
Thank you all so much for following my journey. It’s helped a lot.
We’re on our way home from my colonoscopy. Everything was good. We have to figure out why I am still anemic…
I don’t pretend to understand it all, but apparently at my last appointment with my oncologist (November 14), my bloodwork showed that I was potentially bleeding internally. On December 9, I had an upper GI done to see where I was bleeding. It came back normal, so I have to have a colonoscopy tomorrow to check there. I will update with results as soon as I get them, should be a few days. Thanks ya’ll!!
Saw my speech therapist today because the speech difficulties have come back full force. I keep a running log of how I rate the day based on a scale of 1-3 with 1 being almost no issues and 3 being very bad. Since 12/12/24 when the difficulties started back up again, I see more 2s and 3s than 1s. Last night was terrible. We were playing catch phrase with some friends and I had a very hard time completing thoughts and being able to express myself.
My speech therapist said to work on sleep because she believes that is a major component causing the difficulties. I’m trying to get in to see my PCP but I’ve been unable to schedule an appointment with her yet. I’m going to message my oncologist’s office to try to see her sooner than my PCP. I was able to take a nap today, so that’s good. I will post an update when I get some more news.
PS – I have also been losing or forgetting where my phone is multiple times per day, which is unlike me.
