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.

What comes next?

 

I recently found this website and wanted to pass it along to everyone (and bookmark it for me).

7 Keys to Trust God’s Plan for Your Life

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.

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.

Ups and Downs

 

I saw my plastic surgeon on October 30 and he said I was doing well. I no longer have to wear my abdominal binder, yay! He also siphoned off 500 cc’s of fluid from my abdomen. It would have come out on its own if I had the drains still in place, but I don’t, so here we are, lol.

I stopped the Anastrozole, again, due to side effects. The month of October held nearly daily headache and/or migraines for me. I only had 3 headache free days and a lot of the other days I had 2 headaches. So, my oncologist had me stop the Anastrozole until I see her again on November 21st. I stopped on October 29th and have yet to see any real improvements but I know it just takes time.

I have still been having difficulties with talking as well as confusion and forgetfulness – more so than my usual. My MRI was essentially normal so we do not know what is causing it. It could be due to stress in general or something else.

The incision is healing well. When I saw Dr Pierce (my plastic surgeon), he said that there was some granular tissue that shows I am healing. It was white and looked like pus but apparently was this granular tissue. It also appears like it’s re-opened but that’s just the healing going on.

I see my oncologist, De DeYao on the 21st for a follow up and lab work.

We are hoping to go to the Veteran’s Day parade this year. Kenn will be having surgery for his hand November 22nd and we are praying for a successful surgery & recovery. Other than that November looks to be pretty calm with me just healing and making Christmas cards.

Thanks for all your support! This has been a long journey but hopefully we are nearing the end.

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.

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!

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.

The club that no one wants to join

 

The ” club” that nobody wants to join. I’ll probably post this again in March, when I got my cancer free news. But I wanted to post now because of all I’ve been through so far: chemo, double mastectomy, and reconstruction. I want to celebrate the progress I’ve made so far. This progress has not been made on my own, I have an incredible support team!! Love you all, and thank you!!

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.

Surgery done!

 

Sheri’s mom here: I heard from Sheri’s husband, Kenn, late last night. He told me was out and in recovery after a 10+ hour surgery. She was doing well and had no pain.

I just got off the phone with Sheri herself. She sounded upbeat and happy, no current pain. She’s gotten up twice with minimal hunching (abdominal incisions), Tomorrow she will have some PT and hopefully go home if everything is still going so well.

Surgery Day

 

Sheri’s mom here… I will post any updates I receive from Sheri’s husband, Kenn. This is a long surgery, 10-12 hours.

Keep Calm and Think Positive

 

It’s been quite the week.

On Tuesday, I went in for a PET scan to try to discover what these speech difficulties are coming from.

On Thursday, I ended up in the ER. My neurological issues had gotten worse and we don’t know why. At the ER, they took several blood tests, all negative except for my lingering anemia. The EKGs came back normal as did the CT scan.

But, my PET scan came back clear…hurrah! Basically I just need to hang in there until the 23rd to get my MRI.

Monday is my surgery, 10-12 hours long, and I’m trying to relax and not worry until then. My husband, Kenn, will be there alone. My mom is arriving late Wednesday for two weeks.

Thank you all for your support! All the recent donations are much appreciated.

Surgery getting close! Help needed, please…

 

First of all we want to thank everyone for their support during this crazy time. Thank you for supporting us during the first gofundme. We are immensely grateful to all of you who have prayed, donated or helped us in any way.

The neurologist thinks my speech difficulties are from stress. So, I need to try to reduce that. She told me to begin taking magnesium and Vitamin B2 because my levels are low. My iron levels are also low so I will begin taking an iron supplement in the morning

I’ve been feeling beat down, and overwhelmed at all the changes I need to make to try to prevent this pre-diabetes from becoming full blown diabetes. In addition, I need to lower my stress, solve my insomnia and migraine issues in order to maybe be able to resolve my speech difficulties. And I have to see a speech therapist. It’s a lot. Please say some extra prayers for me. Thanks!!

The next surgery is just around the corner, on September 16. I will be out of work for two weeks, minimum. My short-term disability won’t kick in until the second week. So, we are left with me being out of work, and pay, for essentially half a month.

Please donate if you can (even a few dollars helps) and share our fundraiser as it is the only way that we can see to cover our expenses. Thank you!!

VA visit about my speech difficulties

 

Regarding my speech difficulties, I saw neurology today and there were no real answers from the neurologist as far as why this is happening, although she did give me some things to try. She wants me to use the Cephaly device (that I got from the VA many years ago) as a migraine prevention rather than an abortive measure, and start magnesium, riboflavin, and melatonin (not all together).

She thinks I have been under a lot of stress on top of my insomnia and is trying to treat the insomnia and the migraines in order to decrease my stress levels. We’re still waiting for the results of the Keppra level, as well as some lab tests she’s ordering today. She is also putting in a consult for speech therapy in the Springs. I will see neurology next in January. It was the first appointment they could get me.

I admit to feeling a bit defeated and overwhelmed right now.

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!!

Less than a month away…

 

I saw my plastic surgeon yesterday for my pre-op appointment. Everything is great, and I have 3.5 weeks until surgery.

Port Removed and VA Approved

 

I’m back!! My port is gone! Don’t even remember it. When I had it put in, I was vaguely aware but not this time. I had a nice turkey sandwich, some vanilla wafers and a banana waiting for me.

AND…

Great news! I called the community care office at the VA earlier yesterday and the authorization for oncology and the one for the plastic surgeon have both been approved. Woohoo!!

Cheering!

 

Recap and a little help...

 

I thought I should post a more comprehensive recap of my recovery, so here goes. I’m continuing to get the chemo injections every 3 weeks. However, we’ve run into some problems with the hormone suppression medication. The first one I was on from April 20 to July 2. It was causing me to have difficulties speaking. It felt like my lips and tongue weren’t connecting with my brain. Went to the ER and they did a full workup, everything was fine.

On July 8 I started my 2nd type of hormone suppression medication and at exactly one week after taking it, the speech difficulties began again. So we stopped that medication and tried a 3rd one. After about a week, I updated my oncologist’s office that I was still having speech difficulties so they had me stop it until I see my oncologist on the 19th.

Here’s how long I was on each medication:

• Anastrozole 4/20 – 7/2
• Exemestane 7/9 – 7/16
• Letrozole 7/25 – 8/7

So I had about a week’s break from each of them before trying a new one. I have no idea what my oncologist will recommend when I see her next.

Meanwhile, I’ve had a sinus infection and walking pneumonia (not at the same time.)

I also found out that when I have my surgery in September the first week will be an exclusion week by my short-term disability. So I’ll only get paid for one week of the two I’ll be off. Please continue to share my fundraiser as I have many more tests and my surgery to get through.

Thank you so much for all your support!! It means the world to me and my family.

Feeling a little better…

 

Sunday:

Just a quick little update. I rested in bed all day yesterday. I had to resist the pull of the craft room, lol. I spiked a temperature of 101. The on call oncologist said to alternate ibuprofen and Tylenol if I had trouble breaking the fever. The fever actually went up after my initial dose of Tylenol, so a little while later, I took ibuprofen and the fever slowly came down. I think I’m getting better because I was able to go downstairs to let the dogs out where yesterday, Kenn did all of that. Today will be another at home day, no church for me 🙁

I’m concerned Kenn might be getting sick too because he’s got this weird little cough like I had last Tuesday. Please remember him in your prayers too.

As always, thank you so much for your good wishes and prayers. They mean a lot to us.

Monday:

We’re good. Kenn has a little cough like I had when this started. Hoping it doesn’t progress anymore. I felt a lot better yesterday and so far today it’s good. Got some energy but this cough is killer. It hurts pretty bad when I cough. Looking forward to it being gone.

Sick, new update…

 

I didn’t think it was possible to feel worse than yesterday, but here I am trying to cough up a lung. Argh. So glad I didn’t get this during chemo or right before or after my surgery. #silverlining

It’s more than just a cough…

 

Just got done at urgent care (again!) and apparently I have the early stages of pneumonia. They put me on 2 antibiotics, a capsule cough suppressant, and a nasal inhaler. Best news, I’m not contagious!! Woohoo. I’m glad I decided to go in and get seen instead of waiting.

Cough, cough….ARGH!

 

So, I’ve come down with a cough, started Tuesday.

Went to urgent care today and all the tests (Covid, Flu A, Flu B, and RSV) were negative. So that’s good.

Meanwhile the cough is getting worse.

Please pray it will clear up fast. Thanks!

Breathing & Sleep

 

I finally got in to see pulmonary. Nice doctor, I really liked her. They are putting in an order for an at home sleep study. So cool. The company they use sends me the equipment (a wrist or finger device or an around the chest device) and I do it at home over 2 nights. I will update when we get the equipment.

VA Referral Issue

 

I spoke with the Community Care office yesterday morning. They are the ones who handle referrals to non-VA providers. My oncology referral expires August 15. The lady said they are currently working on requests from 6/8 and my request from my oncologist was sent on 6/25. She said she is not sure if my request will be processed by my first appointment in August which will be August 19.

Please pray that my referral will go through in time. If I have to postpone my treatments it will run too close to my surgery date of September 16. Currently my last injection is scheduled for September 11. Thank you!

Saw my PCP today…

I saw my primary care provider this morning and she answered a bunch of questions for me. Apparently I am pre-diabetic. My A1C came back just over the limit for normal. So, I have to start eating differently. Probably back to lazy keto for me.

She’s going to prescribe a chewable calcium since the tablets keep getting caught at the back of my throat. I have to take calcium (and Vitamin D) because I have osteopenia.

She’s also going to write a referral for massage, now that the VA covers that. Hopefully some regular massage will cut down on the number of headaches I get.

She also set me up to see her more often until I finish my cancer treatments, just to keep up with any issues that arise. 

Hair now

 

Just thought I’d post an updated pic of my hair growth. Yes, it is growing back in, grayer than ever, but I’m just happy to have it back. Although I would have loved some curls (just kidding, any hair is good hair).

Hormone Suppressant Medication Update

We just left the oncologist’s office. She is going to put me on another hormone suppression medication. This one is called Letrozole and is related to the Anastrozole that I was on first. Each of these meds affect people in different ways so we are hoping I won’t have the speech difficulties on this one. She did say, that since the chemo completely got rid of the cancer, she’s not real concerned about keeping me on a hormone suppressant med. She said that it comes down to a question of the benefit of the medication versus my quality of life. I will start the med tonight or tomorrow morning.

Hoping the third time’s the charm! Oh, and one month’s worth from Walmart was $228 until I asked them to run it through GoodRx. Then it was $17.

One Year Anniversary

 

One year ago today I got the results of my recent breast biopsy. We had just gotten back from a trip to Kansas to see my son, his family, and the brand new baby girl, grandchild #13.

I remember it like it was yesterday.

It was a Monday morning, 8:00 a.m. I was on the phone with my mom, then my primary care provider from the VA called with the news. It was invasive ductal carcinoma. I remember waking up my husband Kenn to tell him the news. I don’t remember much else about that day. I went to work and saw clients.

My PCP told me I could see the breast surgeon at the VA on Thursday of that week. The breast surgeon told us the stage of the cancer and let us know all the options we had. I could get treatment at the VA in Denver or here in Colorado Springs I chose Colorado Springs and I’m glad I did. I have had to have so many tests and treatments, I could never have done it in Denver and still worked.

It’s hard to believe it’s been a year already. This last year has flown by. Hopefully this next year will continue to bring healing in every way.

Still having issues…

 

I started a new medication on the 9th and by the 16th the speech difficulties came back. So, the oncologist told me to stop the new medication and see her next week. My appointment is on Wednesday.

I spoke with neurology today and the neurologist said if I get any new symptoms to head straight to the ER. She’s confident it’s medication related, not anything more. While talking with her, I had the same speech difficulties that I had on the video visit on Tuesday that prompted the call to the oncologist and neurology. The neurologist also said to have a low threshold for heading to the ER if I get any new symptoms.

I’ve noticed that the speech difficulties come back if I’m at all anxious about the conversation I’m having.

It’s all very weird but just another part of this cancer journey.

Time for an update

 

There seems to be less and less to update about these days. However, on June 28 I experienced an episode of severe speech difficulty. I was talking to our office manager at work and my tongue and lips just didn’t want to cooperate with my brain. I wrote it off as sleep deprivation because I had only gotten 4 hours sleep. It continued through the first half of Saturday then tapered off.

I sent a message to my oncologist’s office to see if it could be a side effect of the Anastrozole (hormone suppression medication). I heard back Monday and they got me in Tuesday afternoon. My oncologist directed me to stop taking it for a week and update her at that time.

So I stopped the medicine that Tuesday night and Wednesday experienced it again so I went to the ER as directed. They did a head CT, but we’re unable to do an MRI because my tissue expanders have metallic components. After talking to my oncologist and a neurologist the ER doctor agreed with stopping the Anastrozole for a week but also started my on low dose aspirin in case I had had a mini stroke, or TIA.

Yesterday I got a new hormone suppression pill, Exemestane. I’ll take it at night and am praying I don’t get any bad or weird side effects. This past week+ has been stressful for sure.

Another update I forgot to mention that my oncologist wrote me a prescription for Ativan for sleep. It’s only short term because it can be habit forming. I’ve been on it for a week now and I’m definitely getting more sleep. I still feel sleepy from time to time but not exhausted like I was.

My community care appointment for the insomnia is with a pulmonologist and they couldn’t get me in until July 31!! Not sure how much longer after that I’ll have to wait for a sleep study. We shall see…..

I forgot…need sleep

 

It seems I forgot to mention that my oncologist wrote me a prescription for Ativan for sleep. It’s only short term because it can be habit forming. I’ve been on it for a week now and I’m definitely getting more sleep. I still feel sleepy from time to time but not exhausted like I was.

My community care appointment for the insomnia is with a pulmonologist and they couldn’t get me in until July 31!! Not sure how much longer after that I’ll have to wait for a sleep study. We shall see…..

All punked up…

 

Another good report…

 

I saw the oncologist yesterday and we will be moving to seeing her every 6 weeks instead of every 3 weeks. I will still be getting the injections every 3 weeks, until September 11 (right before surgery on the 16th, lol). All the labwork was good and my magnesium is back to normal again.

 

My oncologist pushed the VA for a sleep study sooner than “routine” so I have to call the community care office at the VA about getting scheduled here in town. Even at that, the hospital they’re referring me to is still booked out 3-4 weeks. I will be glad to have this insomnia evaluated.

 

Other than that, all is well. I got my first “haircut” since losing my hair today. It’s been exactly 8 months. All I got was a little trim around the ears and neck.

 

Thank you so much for your support, it means so much!! ❤️ ❤️ ❤️

Yes, it’s growing!

 

Whiter than before but I’m still wishing for curls!

Bone scan results…

 

I finally got my bone scan results. I had to get my medical record number from the company that did the scan and sign in to their patient portal. The scan just showed arthritis in various spots, no metastasis. Yay!! Now we just gotta figure out why my lower back hurts so much, lol.

A few more results…

 

I saw my oncologist Tuesday and the head CT came back normal. We’re still waiting for the bone scan results. I’m still slightly anemic but she said we’ll keep an eye on it. However, my magnesium is still low so I’m going to take Slow Mag again, for 2 weeks. I had my phesgo injection Wednesday.

Image Reborn Retreat

 

I was blessed to be able to go to an Image Reborn breast cancer survivor retreat this weekend.

https://imagerebornfoundation.org

It was at a beautiful home, donated by a wonderful woman who has a heart for breast cancer survivors. We had opportunities to experience yoga, reiki, massage and gentle exercise. There was a hot tub for us to use. We had group meetings where we introduced ourselves and spent some time relecting and processing. Rodizio Grill donated an awesome meal Saturday night.

We were showered with gifts from supporters and sponsors. We did an art project last night where we passed around a canvas and added to what the previous person had done. The first round we got 2 minutes to paint and the second round we had a minute each. The finished product is my last photo here.

It was so good to meet these women and the volunteers (who are all breast cancer survivors) and talk with people who really get what you’re going through.