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.

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's here!

 

It has arrived! My 1 year cancerversary.
Today marks 1 year since I got the good news that I was cancer free!!
Time to celebrate!!

Hair and Sleep

 

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.

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.

Just checking in…

 

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.

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!!

Missing words...again

 

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.

Frustrated. Is this uphill or down?

I am very frustrated.

The VA canceled my appointment with my PCP, who I haven’t seen for 3 months. I have a list of issues to discuss with her, things that my oncologist has referred me to my PCP for. I’m currently waiting for a message from my PCP’s nurse to let me know when I can get in.

Also, the speech difficulties are back. I had about a weeks reprieve and then it came back, almost worse than it was originally.

I see my plastic surgeon February 5, and the oncologist February 21st. I will update with any changes.

Thank you so much for all your support as I walk this journey!!

The latest medical update

 

So far not much more to report than my last update. However, I am thrilled to say I “graduated” and am no longer seeing my speech therapist. I’m having much less speech difficulties in the last week. I have had a few situations in which I stumbled some but overall I am over it. We think that it just took a while for the hormone suppression med to work it’s way out of my system.

I see my PCP on January 30th, the plastic surgeon February 5, and the oncologist February 21st. I will update with any changes.

No more hormone suppression

 

I saw the oncologist yesterday. She said her main concern is quality of life versus being on a hormone suppression drug that gives me terrible side effects.

So, for now I am not on any hormone suppression meds and I see the oncologist in 3 months.

We still don’t know what causes the speech difficulties and they are ongoing at this point.

Since I received a complete pathological response (meaning I had no cancer in my body after the mastectomy), the oncologist feels that there is no reason to try any hormone suppression meds for the little gain in reduction of chances of recurrence.

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.

A short update

 

My pulmonolgist put me back on oxygen at night and I will do another home study sleep test.

I’ve been on the Anastrozole (hormone suppression) since October 5th and so far I don’t seem to be having many side effects. I know that joint pain is a side effect, and I seem to have it in my feet, of all places. What I’ve noticed though, when I go downstairs for the first time of the day, my feet hurt. But once I’m up and moving around, it goes away.

I see the oncologist November 21 unless something happens that warrants a visit before then. The Anastrozole is a 5 year treatment, I’m officially in maintenance now.

Long overdue update…

 

I realize it’s been a while since I updated you all. Sorry for that. September 16-28 I was off work for my surgery and recuperation. This is a long update.

On September 30, I saw a speech therapist for this crazy word stumbling. It has improved greatly since the surgery but it still happens when I’m tired. We will begin regular appointments next week.

I saw my PCP on Oct 1. She didnt like the looks of my iron level so we’re going to do more labs in 3 weeks. Regarding the MRI, it was essentially normal. There were some areas of chronic microvascular ischemia which, as she said were not normal but not unexpected.

My oncologist also didn’t like the lab results so she ordered more bloodwork. We are planning to start the Anastrozole again tonight, since the MRI was normal and these hormone suppression meds are a long-term treatment. She said I will be on it for 5 years. I think I did better on the Anastrozole than the other two I had tried. My anemia is still present and Dr DeYao is looking into what non oral iron supplements the VA will pay for, then I’ll get started on it. I believe she said it was an IV infusion. She is going to check in on me by phone after the labs are done.

I saw my plastic surgeon on October 2 and he did remove the abdominal drains – yay!! I can wear regular shirts again! He said I could take the dressings off the drain sites in 4 days, so I took them off this morning. My follow up with him is 4 weeks out. Hopefully at that time I can stop wearing the abdominal binder.

I see my breast surgeon next week. It’s our 1st 6 month check up. I don’t anticipate anything major to come from the appointment.

I’m no longer on the oxygen – yay! I do get kind of worn out by the end of my work day. And when I’m tired, the stuttering/stumbling starts. I also am having trouble with shortness of breath with exertion. Climbing the stairs at home wipes me out. I try to arrange tasks grouped by upstairs or downstairs to minimize how many trips up the stairs I have to make in a day. Walking just a little way also wipes me out and I have to stop to catch my breath, and walk very slowly.

I forgot to mention that my a1c is now 5.2 so I’m not pre-diabetic after all. I’m still researching in case it comes back in the future.

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.

First week at home…

I just realized I had not posted anything for several days. Last update showed me being home with the oxygen on level 1. Well, we had to increase that to 2 and now my O2 saturation levels are consistently in the upper 80s and low 90s. When I am up and about without it, I get reminded fairly quickly. I had my first post-op appointment this morning and Dr. Pierce was encouraging about how well I’m healing. They removed the drains in my breasts but we’re leaving the abdominal ones in for another week. He sounded optimistic that I would have less than 30ml through both drains for 24 hours (8 am, 8 pm and the next 8 am reading combined).

Tonight I’m heading to Bible study with my portable oxygen. By the grace of God, I am still painfree!! I had planned to get some reading done during this down time but I just can’t muster up enough motivation. I am getting lots of healing rest. Thank you every one for your continued support and prayers.

First day at home...

My day finally arrived!! I had my DIEP procedure early Monday morning. My hubby waited all day in the waiting room, except for some brief runs home to feed the critters.

I’m home now, settling in to the lift recliner. I can walk almost upright but my plastic surgeon said to stay hunched over to let the abdominal incision heal without stress on it.

I had to come home with oxygen for nights only because my O2 sats were dipping into the 70s – 80s at night.

Poor Kenn has to do everything around the house and still help me. Please pray for him, he’s got a lot on his plate right now. My mom is here for 2 weeks also. Here are some pics from my first day home.

UPDATE: I didn’t mind insomnia when I can go to my craft room and make cards. But this sitting around, not being able to go upstairs to my craft room is bugging me. I can’t read a book right now cause all the lights are out so Kenn can sleep. I’ve already scrolled Facebook and some blogs. I can however, read on my tablet or phone. I think I’ll try that, it’s 430 am here and I’ve been up all day and night.

UPDATE 2: I learned I need to use the oxygen 24 hours a day. They left small tanks and a carry bag for when I leave the house. Hoping this is very temporary!

Home, time for recovery!

 

I’m in my recliner at home. I got sent home on a little bit of oxygen for nighttime. The pups were glad to see me and my mom, too. Now I have to call and arrange for VA to approve it.

From the hospital….

 

I’m just hanging out after surgery yesterday. Thank you to those of you that came by to visit Kenn yesterday. And thank everyone who supported us in any way during this ordeal. We have a great tribe that we love very much.