My latest oncologist visit

 

What my oncologist said…

Severe dry mouth: “It sounds like you are doing everything right. ” (using Biotene mouthwash, oral spray and mouthwash and staying very well hydrated.) “We would just encourage you to moisten your food prior to eating with sauces, broth or gravy. Apply petroleum jelly, Aquaphor to lips and gums. Additionally using a cool mist humidifier can help.

Edema in legs: wear compression socks and I just got some new ones because I gave most of mine away

CT Scan: No sign of metastasis. However, they saw very bad arthritis (“advanced spinal degenerative change”), which I have been aware of since 2008 when I had to stop working as a LPN due to the arthritis in my spine ( I was doing home visits with people who were quadriplegics.) That’s when the VA came in and offered to send me back to school to finish my Bachelor’s degree . I still have some questions about the CT findings because I didn’t have the results opened on my phone so some questions went unanswered. I will probably draft a secure message with those questions.

Sleep issues: Too much mental stimulation (phone), try reading instead

CEA blood test (tests inflammation): Still high, but it’s slowly going down

Stiffness in hamstrings and hips: Move more, add weight bearing exercises

Currently, I am being seen every four months because of the osteopenia. She is concerned abut it becoming full blown osteoporosis so I will have another bone density scan in October. Meanwhile she wants me to incorporate some weight bearing exercise into my days. When I researched that, I saw that my balance exercises were considered weight bearing exercise so I can kill both birds with one stone. I also found out that resistance exercises are also weight bearing exercises so I’m going to research that.

At 3 my year mark (3 years cancer free) we will switch to every 6 months. This will be in March 2027.

What’s up with me now?

 

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!!

Bone Density Update

 

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.

My latest news...

 

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.

June Update News

 

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.

It finally got me!

 

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…

Seizures – part two

 

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!!!

Return of my seizures – part one

 

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!!

Visiting my local ER…

 

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!!!

More sleep needed…

 

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.

Still coughing...

 

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.

Never ending...

 

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.

Sleep study done

 

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.

No answers yet…

 

We’re on our way home from my colonoscopy. Everything was good. We have to figure out why I am still anemic…

Here we go again…

 

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!!

Sleepless days & Sleepless nights

 

Well, I just got done with my sleep study. I saw the pulmonologist and they ordered a split sleep study that had to be done at the clinic(I don’t rememberwhat a split sleep sudy is as opposed to a regular sleep study). The pulmonary office told me they were booking 6-8 weeks out. When I called the sleep lab, they just had some spots open up so I grabbed a spot for last night.

Everything went well. I only remembering getting up once to use the bathroom and other than that I slept all night. I had to use my essential oil blend for insomnia to get back to sleep, it worked like a charm!

I wasn’t able to book another pulmonologist’ appointment until January so Dr Google will have to tell me my results when they show up on the app.

Well, that didn’t last long…

 

I just posted about being on Anastrozole since Oct 5th. Well, now I’m not. I’ve had an increase in migraines and that is a side effect of that medication. Sigh…we will see what my oncologist decides when I see her next time. In the meantime, I’m hoping for a decrease in migraines.

Anemia...

 

I had to get an IV infusion of iron because it’s so low, and the oral supplements have not brought it up. Hoping this is the fix!

It's October?

 

I can hardly believe that it is already October! This time last year I was in the midst of chemo and all that entails. I have endured 6 sessions of chemo, having a double mastectomy and most recently reconstruction surgery that involved my abdomen and both breasts.

I’m feeling good overall, just having to work through the anemia I have had since chemo. I have had an amazing support system that helped both of us get through this. I am entering this October cancer free (since March) and hanging on and holding on to God, my faith, my family and loved ones.

Still struggling…

 

I’ve got good news and bad-ish news. First the good news: I was mistaken when I said the authorization for the plastic surgeon was approved – but now I know it has been because his office called me to let me know it was approved. Yay! 

Not so great news: Neurology at the VA in Denver called to set me up with a over-booked appointment. The doctor I spoke to said she still doesn’t think it’s a stroke or even my epilepsy but she said I need to be evaluated sooner rather than later. I’m still having difficulty speaking at times. Originally it occurred when I was tired or stressed. Now it happens most every day and at varying times. So, we will drive to Denver next Thursday morning for a 10:30 am appointment. I will keep you updated. Thanks for all your support!!