God's Little Nudge

(Note: I started this blog post early in this journey and found it difficult to finish. I’m not exactly sure why. I’ve asked myself this question multiple times and the only thing I can think is I was so determined to focus on the positive, I didn’t want to take the chance of beating myself up. I have come to terms with it now and it seems fitting to share it on this one-year anniversary of my diagnosis.)

Many of you have asked, "How did you find it?" The cancer, of course. The discovery was such a God thing that it still amazes me.

First, I should confess to my stupidity. I take pretty good care of myself. I see the dentist and the dermatologist every six months. I go to the doctor for my annual exam and for many years I had annual mammograms.

Then I started reading some information from Suzanne Somers about bioidentical hormones. At the time (about seven years ago), I was having a few menopausal symptoms, mostly night sweats and an occasional emotional breakdown, which if you know me, is not me at all and I hated it! I started doing some research and found a few friends who were using bioidenticals and raved about how much better they felt and amazingly there was a doctor out of Wichita who had an extension practice in Hays, who would prescribe them. Basically, I would go in every 6 months and based on my bloodwork and hormone levels, the pharmacy would compound a hormone replacement lozenge. The hormones used are chemically identical to those your body produces. I loved them! Symptoms gone…I felt great! My sweet, kind, pharmacist daughter-in-law, would occasionally hint that I should consider going off of the hormones, but I continued to ignore her and kept using them. Why not? Again…I felt great!

About a year later, I read another article or two about mammograms and how the harm from the radiation was probably just as dangerous and likely to cause cancer. The clinic where I got my hormones offered a thermography service. It is based on the principle that metabolic activity and vascular circulation in both pre-cancerous tissue and the area surrounding a developing breast cancer is almost always higher than in normal breast tissue. A technician takes a thermal image of the breasts from several angles and the resulting image is supposed to reveal early detection of breast cancer. New images are compared to the previous ones to recognize changes. So, I stopped doing mammograms and did breast thermography every year instead. The thermography results came back fine every year (although after reading the results after my cancer diagnosis, the last one indicated there might be an area to watch). I didn’t think a thing about it and neither the technician, nor the doctor, mentioned anything about it.

To add to this foolish mess, I have always been terrible about doing self-breast exams. I just didn’t do them.

So early in December 2016, Scott and I decided to spend a long weekend in Kansas City to enjoy the Plaza lights and one of our favorite Irish singers who performs at O’Dowd’s on Sunday nights. We had a wonderful evening and headed back to the hotel, where Scott watched a little football and I scrolled through Facebook. It was then I got my little “God nudge”. I have no idea who posted it, but there was an article about paying close attention to your body, particularly your breasts, for any changes. I don’t even think I finished the article before I scrolled on.

The next morning, as I was stepping out of the shower facing the hideous mirrors they tend to mount right in front of you, one of the suggestions in the article I had read the night before popped into my head. So, I lifted my arms and took a look at my breasts. Hmmmmmm…I noticed there was an area on the upper outside part of my right breast that looked raised. I felt the area and thought it felt like there might be something there. I said nothing to Scott, but decided I was going to call and schedule a mammogram when we got home. Of course, it came back suspicious (then I told Scott), which led to an ultrasound, which led to a needle biopsy, which revealed my initial diagnosis one year ago today. A later MRI led to another needle biopsy, where it was discovered I had cancer in two areas of my right breast (Stage 3), which took me on this little journey.

The pathology showed the cancer was hormone receptive, so the hormones I insisted on taking were feeding the cancer all along. The cancer was also a slow growing variety, so I had it for some time and the thermography did not reveal it. I really wanted to beat myself up over my stupidity, but I didn’t. It wasn’t going to help or change anything. With all the conflicting reports from “experts” these days, how do you know who to believe?

What I do want to say is this: Be sure that you, or the woman you love, gets regular mammograms. Pay attention to your body and do regular self-exams (or encourage her to). I was faithful about getting yearly mammograms until I chose to go down the thermography path (which I faithfully did every year too). It was obviously the wrong path! This is especially true if you are doing hormone replacement therapy, traditional or bioidentical.

On January 18, we start the last leg of this journey, which is my reconstruction surgery. We have chosen a DIEP flap surgery, which is a type of breast reconstruction in which blood vessels called deep inferior epigastric perforators, as well as the skin and fat connected to them, are removed from the lower abdomen and transferred to the chest to reconstruct a breast after mastectomy without the sacrifice of any of the abdominal muscles ~ Wikipedia (easier to copy this than try to explain it in my own words – as if I could!). It will be pretty intensive (aka looooong) and will require several days in the hospital to ensure everything is functioning properly before they send me home.

So, I am asking all my prayer warriors once again to help me through this! You have been the wind beneath my wings throughout this journey and with God’s help (and a lot of help from Scott, my hero), I know I will get through this too. Thank you and may God bless you all in 2018!

Back to Normal?

Well, it took about three weeks, post-radiation, to heal enough to feel comfortable in normal clothes and return to work at the office. I was so blessed to have the ability to work from home as I healed. I saw Dr. Prasad two weeks after I had finished and he “scolded” me (as if that gentle man could ever be mean) about powering through my treatments without a break. But he prescribed a burn cream that did its job well and it didn’t take long after that. Most of the area is back to normal completely, but the crease under my breast and my armpit can still feel irritated if I wear something that is tight or rubs. It is a minor annoyance and all-in-all, I feel great! 

Chemo nail

Normal nail

It's really interesting to me that during chemo I didn't have many symptoms besides fatigue. Although I read that it can tear up your nails and skin, I didn't have much, if any, reaction at all. However, months later, I get these strange stains on my nails (which don't last long) and the doctors tell me it is chemo. Even though one thinks they are through, there are constant reminders that there are still poisons in the body trying to get out. 

Last weekend, the whole family decided to walk in the Impact the Cure breast cancer fund raiser in Abilene. We decided we needed matching shirts to look like a real team and had fun trying to come up with a name.

We finally decided on Tuma-nators (cue Arnold Schwarzenegger)!  It was great fun, even though we were some of the last to finish. We got off to a slow start when Kinley, who is potty training, needed to go just as we were starting, and the stroller tires were nearly flat (also noticed as the race was starting), so we stopped at the fire station where they kindly filled them up! They made me run to catch up… I don’t run! 😝 Ha!

We took in the Chisolm Trail Days Festival later that afternoon and a pumpkin patch 
in Manhattan on Sunday afternoon. Scott and I traveled on to Kansas City and went to the Alison Krauss and David Gray concert at the Starlight Theatre, which is an outdoor venue, if you didn’t know. The weather was beautiful and the concert was amazing.

We had an appointment with my plastic surgeon in Kansas City on Monday. He was very pleased with the healing from surgery and radiation. My reconstruction surgery is  scheduled for January 18^th! We will have to go back sometime soon to get a CT scan of my stomach to help them plan the surgery. If all checks out, I will be having a DIEP procedure, which uses tissue from my stomach to rebuild the breast rather than an implant. I’m anxious to get that behind me as well, but at the same time, I’m looking forward to a break from it all.

To celebrate, we are taking the family to Great Wolf Lodge in KC in November. We are all looking forward to that too!

I appreciate all my prayer warriors! We have several friends who are currently in need of healing prayers too. If you could add a prayer for them too; I know He knows who they are. God is GOOD!

Love you all!

AND.....It's DONE!!!!!

I had my final radiation treatment today and got to officially ring the bell! I am so relieved to be done with all my cancer treatments. God has been so good to me and I truly have not suffered much through it all. The worst of radiation is probably not quite done as they have explained to me that the effects continue for approximately 4-7 days following the final treatment, but I am confident it will not be too bad and I will be on the mend and healed before you know it!

When they told me I would have to have radiation to ensure any stray cancer cells would be killed, I remember thinking, “What will they radiate?" There are no tumors left, since they got it all during surgery. They told me they would radiate the chest wall and lymph nodes. I still didn’t understand what that meant.

At my first treatment, when they were setting everything up, they used a marker and drew a line from the middle of my throat, down my chest to about an inch or two below my breast. From there they drew a line under my breast to my right side and up to my armpit. The line turned toward my back and up behind my arm. The line then continued around my back, about 4-5 inches below my shoulder until it reached just below the middle of my neck. They drew the line up to the middle of my neck in the back and around the right side of my neck to join up with where it started in the center of my throat. I thought, “Why in the heck did they draw such a big area?” Well…that is exactly what got radiated! All of that area is red, but there are about four places where it is particularly irritated. Mostly it is rashy and itchy and the aloe vera gel, steroid cream and Aquaphor cream keep it tolerable. The only area which really feels “burned” is in my armpit and that area wasn’t even pink two weeks ago. It is not particularly comfortable, but no worse than a bad sunburn. This too shall pass!!!

Bingo!

My doctor asked me if I wanted to take the week off after the Labor Day holiday, but I told him I wanted to continue. I felt fine and I wanted to get it done. The technicians told me today that most people who have the type of radiation I did do have to take a break for a while. I told them I hope I don’t regret it and they told me my skin looks good compared to some and I’ve taken good care of it during the process. I have been very faithful applying the creams and medications, so if you ever need go through this, God forbid, follow their instructions! 😊

I credit all of you who have been praying me through all of this and thank God for His grace and mercy. There is no way I could have made it through as well as I have without it! God bless you all!!!

I will have surgery on September 22 to have my port removed (YAY!) and will see my plastic surgeon the first part of October to discuss when I will have my reconstruction surgery. Based on what he told me previously, I am guessing it will be next January. I’m not completely done, but I have to believe the worst is over!

I couldn’t close without sharing a few pictures from last weekend. Kellen and Angela had a wedding in Chicago, so we kept Emma and Killian for four nights. Oh my goodness, did we have fun! It definitely took my mind off my discomfort. I am so looking forward to the day I have all my energy and flexibility back (as if I was ever that flexible) and I can actually play in the sun with them (a definite no-no during chemo and radiation)!

She decorated her fort with some of Grammy's flowers!

You can't beat a chocolate moustache!

Although Kinley wasn’t here, Caitlin sent pictures to keep me cheered up too. I am so blessed!!!

Sporting her Grammy support shirt!

Love you all!

Glass Half Full!

Well, I am half way through my radiation treatments. Fourteen down and fourteen more to go! So far, so good. The site is definitely pink and little rashy, but not too annoying yet. The staff in radiation oncology are amazing. We really are blessed to have the Cancer Center here and to get such great care.

I was in Kansas City yesterday and today for a business meeting and while I was there had an appointment with the plastic surgeon to see how my surgery site and skin were reacting to the radiation and to ensure there were no issues. All is well! Our business meeting dinner was held at a Royals game, which was awesome, because they won with a walk-off home run! You can’t beat that!

Kyle and Caitlin brought the grandkids over just for the day right before I started treatments. Because it was short notice and a short visit, Pop didn’t set up the swimming pool. Oh…..but they improvised with a storage container and bucket and had a blast! 😂 Nothing like a redneck pool!

I think we have seen the grandkids nearly every weekend this past summer and we are getting really spoiled. We are heading to Abilene tomorrow to help Emma celebrate her 5^th birthday. It seems like yesterday when we were all sitting in the hospital waiting room in Lawrence awaiting her arrival. What a special day! We had no idea how much our lives would change and how much richer life would be. The love for grandchildren is indescribable and the heart just gets bigger and bigger with each new addition!

Life is good and we are blessed and grateful for each and every one of you. May God bless you as richly! Love ya!

Back on Track!!!

Love my Baby K snuggles!

My plastic surgeon and radiation oncologist finally talked last week and I found out I don’t have to “deflate” my expander to have radiation! Whoop-whoop! So, I had my last fill on Friday and my CT scan this Tuesday. The oncologist and his team are reviewing and developing my radiation plan. I should start radiation on Monday and will have it daily (five days a week) for six weeks. If I need to skip a day they make it up at the end, so with the holiday and a couple of work conflicts I have I will probably finish up the third week in September (if all goes well)!

Love my mama
snuggles too!

I know Scott and I will miss our weekly trips to Kansas City. We have enjoyed the shopping, restaurants, seeing the brothers and their families, AND getting to stop in Abilene to see the kids! We are going to have grandbaby withdrawal!

Daddy & daughter #1

I have been working full days this week and it is great to be back in the office. I’ve really missed seeing my co-workers. It has also been great getting out of the house and moving more. I have been very stiff and achy about the last month. My chemo oncologist told me that chemo is the ultimate anti-inflammatory and it is not uncommon to have all the pre-chemo aches and pains come back with a vengeance for a while (usually 2-3 months). It stinks that I didn’t get very achy during chemo (like most people experience), but, oh boy am I now! Walking seems to help, so I have been doing that as much as I can. I even walk the floors and steps at work regularly during the day. That old hospital building comes in pretty handy for that!

Daddy & daughter #2

Killian was "Ring
Security"!

Last weekend we celebrated our nephew and new niece’s wedding in Clay Center at a beautiful venue out in the country. It was so wonderful to get together with my whole family (well, most of them) and to see some of the relatives on the other side too. This was the first wedding I’ve been to which had a photo booth set up with crazy props. Oh my, did we have fun!!!

He took his job
very seriously!

We are praying that my radiation goes as well as my chemo did! Your prayers are always appreciated too! Have a blessed week! 

Crazy Family

Mother/Daughters with the giggles!

Mother/Daughters/Niece - Goofballs!

Fills, Frustration, Faith, Fun and Fahrenheit (100+)!!!

I knew it had been awhile since I posted something, but……..three weeks!?! Geez! However, there hasn’t been much going on since my last post either. I have been recovering from surgery and we have been traveling back to Kansas City every Friday, so I can get fills in the expander the plastic surgeon implanted during surgery. It was filled with 240 cc of air during surgery and since they have removed the air and it now has 450 cc of saline. The fills haven’t been too bad. It’s a little tight and sensitive the first day or so, but after that it’s ok. The incision is healing nicely too.

I’ve been working part time from home as I can and napping when needed. I’m not sure how I’m going to survive without naps when I finally get back to work full time! 😊

I had my first consultation appointment with the radiation oncologist last Thursday. Dr. Prasad, who is my oncologist, was on vacation, so I saw a substitute who comes up from Denton, TX. He was very nice and informative. It sounds like I will have 6 weeks of radiation (5 days a week) on the entire chest wall and about 4-5 weeks of radiation to the targeted lymph nodes (during the same time period). The big question is when I will start. The oncologist said they will start after the plastic surgeon has the expansion where he wants it and can deflate it. When I had my fill on Friday, my normal nurse was on vacation. When I asked the substitute nurse when I would be done and could start radiation, she said it was up to the radiologist because they don’t want to interfere with the cancer treatments. Aaaaaargh!  Hopefully, Dr. Chandler will talk to Dr. Prasad this week and they will come up with a plan!

So….I don’t know if I will get another fill when I go back this Friday (which I’m pretty sure will be my last) or if they will deflate it to prepare for radiation. Once it is deflated, I go back to Dr. Prasad for a CT scan, from that he will develop my radiation plan (which takes a few days), and then I start the radiation. The biggest symptoms from radiation are fatigue and skin irritation on the sites. I’m praying I get along as well with the radiation as I did with the chemo! I know God’s got this too!

In the meantime, the kids all came the weekend of the 4th of July, which was so much fun. Scott and I took Emma and Killian to the Wild West Fest parade (Kinley wasn’t here yet), we all took in the carnival and had quite the fireworks show one evening. We made a lot of new memories to treasure! 

Traveling to KC every week means we get to stop in Abilene and see them all on the way back too. Every week, I get a hair report. Killian tells me, “Grammy, your hair is getting taller!” and Emma gives me the color report, “Grammy, it’s getting browner!” At first, Killian didn’t want to touch it, but now….he rubs my head just like I like to rub his after his haircuts!

The hardest thing is I still have a 10# weight restriction from surgery. Baby K does not like it when she comes to Grammy and lifts those little arms to be picked up and I don’t do it. The tears are more than this Grammy can take and I can’t find a seat fast enough so someone can put her on my lap. I might have cheated a couple of times and picked her up with my left arm (those tears are torture!). 

Praying you are all surviving the heat and are enjoying your summer with family and friends! 

Onward to the Next Challenge!!!

Well...we found out at my post-surgery checkup that there was a tiny bit of cancer (0.5mm) in one of the lymph nodes removed during surgery (so tiny they probably wouldn't have found it with a biopsy). So Dr Wagner presented my case to the "tuma" board to determine whether to take me back to surgery to get more lymph nodes or just treat it with radiation. They determined radiation is the best track. I have to have radiation anyway because the pathology showed the original size of the one mass was 6.4 x 2.9 x 1.2 cm (way bigger than originally thought). However....my response to the chemo was exceptional, especially considering it is hormone responsive cancer (which oftentimes doesn't react as well). The residual cancer (what was left) was only 5% of the original big mass and 0% of the smaller one. She said that is excellent. The margins were also really good, so they got everything in the breast.

The plastic surgeon said everything looked great. I go back next Friday to get the dressings off and start the rapid expansion prior to radiation (they expand it and then deflate it prior to radiation - I can't remember why and probably wouldn't be able to explain it if I did!). I only know that radiation destroys reconstruction, so it can't happen until after. I think they like to wait 6-8 weeks after surgery before they begin radiation, so they will expand as much as they can in that time. We have the consultation with the radiologist on July 18^th, so will find out more then.

Not exactly the news we wanted to hear, but there was some really good news and it could be way worse. We will get through this as well and know God still has me firmly in His hands!

On a happy little side note, I got my first haircut this week! 😊 I went to see my dear friend, Jeri, to pick up some shampoo and get some advice on how to manage my hair as it grows out. While I was there she trimmed the back and around my ears! Whoop-whoop! She is such a sweetheart!

My mom, sister, and fun great-nephew, Jace, came to visit on Thursday. They helped me get my fourth of July decorations out and Jody and her green thumb pruned my flower pots and helped me re-pot some others (Mom helped too, of course). I love my family and love you all too!

Have a fun and safe holiday weekend!

I Got This!

I have a couple of co-workers who created their own bitmoji (an emoji created to look like you) and they send me funny memes occasionally. I finally decided to create my own. When you create it, it walks you through each feature to get it as close to your image as possible. It’s kind of hard to do on your own, so I had to enlist Scott to help me with some features. I decided this first meme was appropriate considering this surgery has been much easier than I ever thought it would be. I just wish it could have been Wonder Woman! When I first created the bitmoji, I had a turban-type hat on it like I have been wearing these days, but then decided I was going to give it my short salt-n-pepper hair (or “glittered” as some of my friends have advised me). I’ve decided I am done with hats and my wig. It is too stinkin’ hot and although there are a couple of thin spots on top which require a hat in the sun, it is much more comfortable. The G.I. Jana look isn’t all that horrible either. So you are getting a preview of what to expect the next time you see me. I will likely want my red hair back someday, but for now this works!

This was my oxygen indicator.
It was the bane of my existence.
It was more annoying than my
surgery sites. I tried putting it
under my blankets, so it
wouldn't be so bright at night.
It still looked like E.T.!

Surgery last Tuesday went very well. The surgeon took two lymph nodes and the pathology performed during surgery looked clean. Praise God! She also got good margins and feels very good about the outcome. Of course, all is still dependent on the final pathology, but so far so good! The plastic surgeon inserted an expander and filled it with air, so it is not like I have lost everything. It’s just a little smaller and perkier than what I had before. It is also completely wrapped in what looks like plastic wrap with a large strip of duct tape covering the incision! The tape strip is actually impregnated with silver, which is supposed to be a superior anti-bacterial, anti-whatever can cause major issues with surgical incisions. Dr. Wagner, my surgeon, said one of the other KU surgeons was using it and she kept telling him is was voo-doo until she had a very high risk patient and she decided to give it a try. She has decided the “voo-doo” works and now uses it regularly and so does Dr. Chandler, my plastic surgeon. I have had hardly any pain with the mastectomy site and I’m wondering if it is because there are no sutures. The little pain I have had is in my arm pit which is where she took the lymph node (I think) and where the drain is inserted. There is one suture there. It is so crazy to me to have this major surgery and very little stitches (or pain, for that matter). The worst part has been the constipation (sorry if this is TMI again) due to the pain meds I did take. Fortunately, I am down to taking Tylenol, so that should be past me.

Chris brought these awesome
socks for me! I loved them!

My surgery was almost three hours and I was the first one on the schedule. The anesthesia took hold while I was still in the prep room and I really don’t remember much of anything until I was back in my room. The hospital staff at the KU Indian Creek hospital were amazing! I do remember one of them asking me if I was cold after surgery (it was probably in the recovery room) and they covered my little bald head with a warm, heated blanket. My nurse aid, Abe, thought I looked like a nun and kept jokingly calling me “sister”.

"Sister!"

By the time Scott got in my room I was wide awake and feeling good. My dear friend, Chris, came to visit which was so nice. My lovely daughters-in-law, loaded up the grandbabies Tuesday night and stayed at my brother, Jay’s, so they could get to the hospital first thing in the morning on Wednesday to visit. My doctors had all been by to check on me by the time they got there, so I was technically ready to be released by about 9:00 Wednesday morning, but we stayed and enjoyed their visit before we took off. It was awesome to see them all and as you know, they are the best medicine for this grammy. Unfortunately, we failed to get a picture of them all! They stopped at Legends and took the kids to the T-Rex restaurant. We would have loved to join them, but neither of us slept much Tuesday night and we were ready to get home. Scott managed to get us home (with multiple stops to allow me to get out and walk to prevent blood clots) with about an hour of sleep the night before; God bless him!

My folks came to Hays to visit on Thursday (Mom had to make sure I was really ok!) and my sister, Barb, spent the day with me on Friday, since Scott had to work. I loved having them here. This weekend we plan to take it easy. We head back to KC on Sunday for post-surgery checkups with both surgeons and an appointment with the lymphedema specialist on Monday. They should have the pathology report back and have a pretty good idea of whether I will need to do radiation or any more chemo.

The weather is supposed to be in the 70s and we were really tempted to hit the Royals game on Sunday, but we’ve decided I probably shouldn’t push it (darn it)! I will still be cheering them on though!

I need to give a big shout out and gigantic thank you to my superhero hubby. He has been so amazing through this entire journey. He has taken exceptional care of me (like he always has) and been there for me through all the ups and downs. I can’t even begin to tell you all the things he has done for me that would make most people cringe or even upchuck. I have not had to worry about or focus on anything but my health since the beginning. He is my rock and I am incredibly blessed to have had him in my life these last 40 years. I hope we are blessed with another 40! Love you, Scott, and love you all too!

Next Checkbox, Please!

It's hard to see him, but
Bubba is hanging on Pop's back!

I have been terribly delinquent this week updating my blog. I actually worked all week in the office, which is the first since I started my treatments!

Scott and I met with the plastic surgeon last Friday and we really liked him. He is doing some new techniques which reduce the pain with the expansion portion or reconstruction, which is awesome! He confirmed that I am a candidate for DIEP surgery for my reconstruction. It involves a tummy tuck and he will use my own tissue to reconstruct the breast. Bonus!!! It involves microvascular surgery, so it will require more nights in the hospital than my mastectomy! He said I will probably feel pretty good, but they will want me there to make sure everything is working properly.

So…my mastectomy is scheduled for Tuesday, June 20, and the plastic surgeon will insert an expander at that time. We have to wait until we find out the full pathology on the removed tissue and lymph nodes to determine next steps. That will determine if I must do radiation or even the last four chemo treatments. Radiation destroys reconstruction, so that has to come first if it’s needed. The pathology can take up to six days to get and we meet with the surgeon the Monday following surgery, but we don’t meet with my oncologist until July 6^th. I’m hoping we can get some indication of next steps from the surgeon, but we might have to wait until the July appointment. Patience, right?!? It will all happen in God’s time.

The mastectomy is only a one night stay at the hospital, so we will be back home sometime on Wednesday. I’m sure I will be anxious to get home to my own bed. There are restrictions for the first two weeks, so I will be taking it easy at home and let work go. Total recovery is typically 4-6 weeks.

We stopped in Abilene on our way home last Friday and spent the weekend with the kids. What a great time we had! We spent time at the swimming pool and a splash park in Salina, went to Old Town Abilene, rode the carousel, played at a few parks, babysat the grandbabies while the parents had a date night and had an awesome barbecue. I wanted one last weekend before my surgery, since I will be restricted and probably won’t get to see much of the kiddos for a little while. It was great!

All prayers are welcome and greatly appreciated for a successful surgery and recovery. You all have been so wonderful and encouraging. You are the wind beneath my wings (cue Bette Midler)! Love you all!!!