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!!

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.

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!!

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.

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.

Another checkup and some unexpected pain

 

I went to see a lymphedema specialist at Occupational Therapy yesterday. She said my scars have absolutely no adhesions. Yay! However, when I reached above my head to adjust the pillow, I got what felt like a cramp right under my left breast. She checked the area and said we’d keep an eye on it. I forgot it the rest of the day.

Then, in my shower last night, the pain came back with a vengeance. I couldn’t even dry myself off, I had to ask Kenn to dry me off. On a pain scale of 1-10, it was a 9 easily. I would say an 11 but that’s reserved for when I had a chest tube put in in the ER.

I mixed up some electrolyte drink and practically guzzled it. I also put some magnesium lotion on. I think my electrolytes must be off because I’ve been without pain since I drank the electrolyte mix. I’m going to call OT in the morning to see what I should do…

UPDATE: Update on my left side rib pain. I spoke with the nurse at the plastic surgeon’s office. She said it sounded like I had pulled out a stitch. The expander is stitched to the muscle in 6 places one of which is right where I had the pain. She said to just take it easy and if something starts to hurt, to stop it.

Saline done!

 

The view from my plastic surgeon’s office today. I have enough saline in the expanders and don’t need to be seen by him until my pre-op appointment Aug 21. I just have to see oncology every 3 weeks for my injection and labs.

A little update...

 If you are in my Facebook group you've already seen this...

On the 26th, I had the air in my expanders replaced with saline today. I feel like I have breasts again! Yay team, I’m no longer flat!!!

Not so hairless anymore, plus more news!

 

And....
   Got my drains out yesterday!! Now I have more choice of what to wear, yay! And there was no pain.

Reconstruction Surgery Scheduled

 

My breast reconstruction surgery is scheduled for September 16th. It will be done by my plastic surgeon and will take 12-14 hours. I will spend 3-5 days in the hospital. He will be doing a DIEP flap surgery. Here is the description from the Mayo Clinic page about the types of reconstruction.

DIEP flap

During a deep inferior epigastric perforator (DIEP) flap procedure, the surgeon removes a section of abdominal skin and fat, along with the associated blood vessels. Using complex microsurgical techniques, the blood vessels are attached to the ones in your chest and the skin and fat are used to create a breast. copyright Mayo Clinic

Recovery is much longer than my double mastectomy and I will be out of work for several weeks, maybe more than a month. My mom plans to come out and help for for a week or two, giving Kenn a break and letting him get back to work. And yes, there will be drains – again!

And again, thank you everyone for all your support and help.

Ups and Downs ~ Yes and No

 

My big YES was getting to take a shower yesterday AND sleep in my bed instead of the recliner downstairs. Heaven!

My big NO was getting the two drains out today. I just spoke with the nurse and, as I suspected, there’s still too much drainage (80 on one side, 70 on the other, in 24 hours) to remove the drains. It needs to be 30cc in 24 hours. Thinking Monday for sure.

Plastic Surgeon Visit – 3/6/2024

Just saw the plastic surgeon on Wednesday. The drains didn’t come out because they’re still draining too much fluid. The nurse is going to call me Friday morning to see if they are draining less and if I am in the right range, she will take them out at the office Friday. They gave me a compression bra to help get the fluid out. I see them again in 3 weeks to exchange the air in the expanders for saline.

They took off the bandages and put on steri-strips. I can now shower I just have to be careful not to get any water on the drain site. I can also sleep in the bed rather than the recliner, yay! She said that depending on the oncologist’s choice they can do the next surgery in 4-6 months.

Thank you so much for joining me on this journey!!! 

Dropping mom off at the airport