It’s been a year already?

Well it sure has been awhile since I posted any updates. I have started and stopped writing at least 5 or 6 times over the past few months with the intention of finishing the post and getting it out there, but then time would get away from me. I would start again and have tons of updates and would just never finish. So, with this update I just want to give a quick summary of my cancer journey over the past year. YES! It was a whole year ago in May when I was diagnosed with triple negative breast cancer for the 2nd time. So May is now when I “celebrate” my Cancerversary every year (it used to be April for those 10 great years between the 1st and 2nd diagnosis). I started chemo in June and finished in August with my first surgery in September and mastectomy in December. All went as planned with no complications. What a relief. Further pathology on my tumor found a small percentage of cells to be progesterone positive (PR+), but they continued to treat me for triple neg because it was such a small amount. Then my oncologist later decided to add Tamoxifen to the mix after my regular chemo treatment ended. He said it is just an extra “extra” insurance policy to protect me against getting a PR or Estrogen positive breast cancer in the future in tissue near my mastectomy or elsewhere in my body. So I have been on Tamoxifen since October and had the usual side effects. The hot flashes came nearly every hour of the day and night with lots of sweating. I did not sleep well. I gained 25 pounds. Then, most recently, I began having terrible hip pain and some knee pain. I had nausea and headaches too, but I got used to that and it had subsided a bit. I just had a follow up appointment with my Oncologist this week and he has decided to take me off the Tamoxifen! I am thrilled and scared at the same time. He feels that I am really not at huge risk for the type of cancer that Tamoxifen protects against AND a better quality of life surely outweighs the bad side effects that I was dealing with. Hallelujah! I wait the next few weeks to start feeling even better, but in just days I have seen improvement!

As for everything else with my breast reconstruction… well, that is going well. Oh, and my hair is maybe 3 inches long since it started growing in October!! That makes me happy. I am finished filling my tissue expanders with my last fill on April 17 after months of weekly visits to my plastic surgeon to fill each side with between 50-100 cc’s of saline. My muscles have adjusted well. I did have to go for physical therapy to assist with some tightness on my cancer side due to lymph nodes that were removed and previous radiation to my skin and muscle 10 years ago. I had some pain at the end with my last couple of fills. I still do the stretches that I learned in PT and it helps a lot. I have my exchange surgery on July 31st. It will be an outpatient surgery with a short week of recovery time. I think this one will be easy! It will be the last step in reconstruction where they will exchange the saline expanders for silicone implants. Then boom, I will be done with everything! Whew! I’ll just go to my oncology surgeon for ultrasounds to replace mammograms to check for any recurrence and meet my oncologist every 6 months for blood work. 

Jake and John are doing well. John will be starting his 3rd medication for Crohn’s after the first 2 failed. It has been a year since he started these treatments and has seen no improvement! Third time is a charm they say?! Let’s hope so! In just a couple of weeks Jake will be turning 13!!! Wow, I blinked and he’s a teenager?! We will be taking a cruise to San Juan, St. Thomas, Dominican Republic and Turks and Caicos the week after his birthday. This trip is replacing the one we cancelled for Spring break due to John’s dad being in the hospital at the time. We are so glad we cancelled and we were able to be with him every day during his last week with us. He passed away peacefully on Easter Sunday, April 1st. Our lives will not be the same without him, but we sure treasure all our memories with him.

Lastly, in order to improve my health after this long year I have been doing yoga at the Cancer Resource Center at Condell Hospital twice a week since March. I have just added exercise classes at the end of April. I do those three times a week for one hour. It is cardio with weight intervals and OMG it is killing me. I look forward to going because I feel good afterwards, but during the hour I am dying. I do a ton of modifications to try to get through the class, and hope that I can make progress so it is not so hard for me. I have even cried halfway through from pain in my hips and feet and being out of breath. I get frustrated with the steps and sequences, but I persevere. I have to get this weight off and I have to improve my heart health after the chemo knocked me back a few notches. I feel like I aged 20 years this time around, but I know that slowly but surely I will get those years back. They say that chemo damages the heart muscle, but you can rebuild it. Well I hope my heart thanks me for this. Now I just have to stick with it! Fingers and toes crossed. 

In my long year of treatment and surgeries I’ve seen moments of fear, pain and misery… but I do think I’ve felt more happiness and joy than ever before. It’s just one of those things. You feel different knowing that your life could change at any given moment. Live life to the fullest… now.

May you all enjoy your summer! 

Xoxo ~Kathy

Is it Spring yet?

Well, hello everyone! It is officially one month yesterday from the date of my double mastectomy surgery. I can officially say that it is no walk in the park, but I am recovering very well. Everything went as well as it could. My sister came into town for the surgery and stayed the whole week and that was great. She picked a super cold week though and was happy to get back to Vegas where they were having unseasonably warm 70’s for this time of the year! Wish I could have gone with her!

So… after 3 nights at Good Shepherd Hospital (BTW my favorite hospital… and where Jake was born and my surgery 10 years ago took place) with awesome nurses who took very good care of me, I was home on the afternoon of Friday, December 29th. I was confined to home for the first week as I had drains in and I slept in the recliner (ugh… hate it) but the pain was minimal. I continued to feel better each day. I was able to stop taking the pain medication after just a few days. Docs were so pleased to see that there was no bruising. Of course that is a pat on their backs, not mine! Surely this tells them they did a great job! But, hey, I’ll take these small victories anyway I can get ‘em! I got my drain tubes out after 13 days. OMG. Let me tell you that was the most freeing moment. It was just really gross and these bulbs are tethered to your body and about the size of a hand grenade, hanging down from each side. And, you can’t shower! Ugh… These things would fill about half way with a bloody fluid within a 24 hour period. Just gross! I have a pretty strong “stomach” for these things and I was grossed out.  Now that they are out, I have resumed almost full range of motion with small limits due to some tightness. My left side has some additional tightness and stuff going on because the lymph nodes that were removed there. I can’t lift more than 20 lbs for a while. It’s actually a good feeling in a way. Feels sort of like you worked out doing some bench presses at the gym a couple days ago. You know, that good feeling in your muscles… the feeling that makes you aware that these muscles are there. That your muscles are getting stronger (wishful thinking). My skin is numb in many spots and the incisions have healed well. The feeling will likely not come back, but least of my worries, right? So… I now have expanders (aka balloons — haha) under my pec muscles that were filled with about a quarter cup of saline to start. I have started to go each week to get “fills.” I get 50cc in each side, and for those who are not in the medical field, that equates to about 1/5 cup. My plastic surgeon prefers to fill each week with this small amount so that the muscle and skin stretches slowly. I’ve heard others go every 2 or 3 weeks and get 100cc or more in each fill. They also take Vicodin and muscle relaxers because it is painful to recover from that much expansion at one time. So… I am fine with my plastic surgeon’s approach!

I’ve also gone back to taking Tamoxifen (which needed to be stopped while going through surgery as it can cause blood clots). I am adjusting to it once again with some minor setbacks. I get headaches… I feel nauseous… I have muscle pain in my legs, hips and thighs (I hear magnesium will solve this if it continues). But, all in all, it is not horrible…  just noticeably different from feeling “normal” – Oh wait, that is with the exception of HORRIBLE hot flashes that seem to be getting worse, instead of better. Now, with each one I feel a wave of nausea and dizziness. I just feel sick. What the hell… thankfully they only happen a few times a day (and at least 4 to 5 times at night!!) and I can only hope that most are not while I am driving. That is an awful feeling to have while you are operating a motor vehicle. Ugh… So each time I count down in seconds… the 2 to 3 minutes until it passes which it always does but, boy, during those moments it is a bit uncomfortable.

Oh yeah… and I hate my hair right now – while so so so grateful to have it back, it is a bit of a mess as it grows in thick and curly (my hair has always been pin straight, go figure!) and although people who know me realize that this “hair style” is certainly not my choice, those who don’t know that I was recently bald must be thinking… “why in the world does she go out of the house with bed head” – my hair has a mind of its own and sticks up in all different places! I seriously try to use mousse and hair spray to get it to lay down and nope… it does what it wants! Oh well… it is growing fast, so I am sure I’ll feel better about it soon. More of a worry for me is that I keep gaining weight and have to get moving more. Let’s face it, I have had a lot of downtime…  but it is so hard to get motivated. I always find something else to do and find excuses to avoid the gym. Plus… I truly enjoy all the meals that people have brought and love going out to eat. I have been trying to make some meals at home too. Good ‘ol comfort foods like chilli (with lots of cheese, crackers and sour cream!) and beef stew with dumplings (my favorite way to have beef stew!!) okay, now I am hungry!! Well… Doc has released me to exercising but just not lifting upper body weights. So really, I have no more excuses. I know I will feel better once I get going. Wish me luck!!

And now a few quick updates on some other things not related to my surgery. John and Jake are doing well. John has had a setback with his Remicade treatment and will move to a different medication called Cimzia soon. Apparently Remicade just did not work for him! Ugh… Blood test revealed that there was a very low level of it in his bloodstream and he built up antibodies to it. So it is just not working after all this time!!! So… he’ll be moving to another treatment that he will inject himself every 2 weeks to start and then every 4 weeks after. We will know a couple months into treatment if it is working. He’s feeling okay and some steroid and other medication are keeping his symptoms at bay in the meantime. Stay tuned!

As for Jake… well, hockey continues to keep us all busy with games on weekends and three practices during the week. He continues to love it and we enjoy the games as well. His team is really coming together and they have won 5 and lost 5 and tied 1 game so far this season. Not great, but not bad. He’s keeping up with school work and has had a chance to ski a couple of times. We are planning our Spring break trip to Vail (3 nights) and Breckenridge (2 nights) at the end of March. I will not be skiing of course, but rather will enjoy Kathy’s “spa week” while we are there! A massage, mani/pedi, facial, swimming, hot tub and reading a couple good books… I think I can fit all that in while we are there. Can’t beat that, right? Then evenings with the family for dinner and more swimming / hot tub at night. The beauty of the mountains is so healing, so I can’t wait! Turns out we will arrive in Vail for Pink Vail day which is March 24th. Apparently it’s a big cancer fundraising event for Vail Hospital’s Shaw Cancer Center that started out in 2012 raising money for breast cancer patients and now represents ALL cancer. They raise money to give patients the opportunity to receive free exercise training, nutrition coaching, emotional support, massages, acupuncture, outdoor adventures and much more. These unique services can dramatically impact a patient’s quality of life, but are not typically covered by insurance. This sounds a lot like the services that Cancer Wellness Center here in Lake county provides and it is pretty cool. We will also be there on a very special weekend for the 3rd annual “We Ride For Lanphere” day. Mike Lanphere died at age 29 from a form of lymphoma. The Lanphere family is near and dear to us and we look forward to seeing them in Vail.

In summary… some good times to look forward to! And… physically I am doing pretty well! Emotionally, it has been tough. While going through this process, from diagnosis through chemo, and surgery…  it’s like you put yourself in warrior mode and just go through the motions in order to survive. It’s like you know in your heart that this is something you have to do to save your life, so you do it and you don’t complain. You just do it. Complaining and whining does not help anything or anyone. It just makes misery for yourself and those around you. I truly feel that way. At the same time, a little part of me is saying “well, keeping things in can have its own issues and letting your thoughts out more could help in the long run!” Still… I will continue daily to keep any negative emotions to myself. I prefer to be positive and in the scheme of things if I can live a long health and happy life after this with my family and friends by my side — then the fact that I feel horrible about losing a part of me, feeling ugly and disfigured, and how I feel about looking like a short fat man right now (nothing wrong with being a short fat man, of course, if indeed you are a short fat man. I am not.). I know this will soon fade as I look to the future and the fun, the beauty, the laughs, and all that is really good in life that my future holds. So, aside from writing a bit here about the realities of this shit… any ugly thoughts, depressing emotions, and my “feeling sorry for myself” feelings will remain locked up. Trust me, it’s not easy to remain positive, but it can be done. I am alive and I thank God for guiding me in this positive direction, despite moments of being down. I choose JOY, because, well, let’s face it – the alternative sucks.

Thank you for caring, praying, and providing support! I leave you with a parable that resonates with me at this time in my life:

The Seasons of Life

There was a man who had four sons. He wanted his sons to learn to not judge things too quickly. So he sent them each on a quest, in turn, to go and look at a pear tree that was a great distance away.

The first son went in the winter, the second in the spring, the third in summer, and the youngest son in the fall.

When they had all gone and come back, he called them together to describe what they had seen.

The first son said that the tree was ugly, bent, and twisted.

The second son said no – it was covered with green buds and full of promise.

The third son disagreed, he said it was laden with blossoms that smelled so sweet and looked so beautiful, it was the most graceful thing he had ever seen.

The last son disagreed with all of them; he said it was ripe and drooping with fruit, full of life and fulfilment.

The man then explained to his sons that they were all right, because they had each seen but one season in the tree’s life.

He told them that you cannot judge a tree, or a person, by only one season, and that the essence of who they are – and the pleasure, joy, and love that come from that life – can only be measured at the end, when all the seasons are up.

If you give up when it’s winter, you will miss the promise of your spring, the beauty of your summer, fulfilment of your fall.

Don’t judge a life by one difficult season. Don’t let the pain of one season destroy the joy of all the rest.

Persevere through the difficult patches, and better times are sure to come in time.

TWAS THE NIGHT BEFORE SURGERY

TWAS THE NIGHT BEFORE SURGERY

Twas the night before surgery, and all through the house,

Not a creature was stirring, not even my spouse.

I was trying to sleep, when panic suddenly set in,

It’s time to say goodbye to my breasts, “No, cancer, you can’t win!”

 

Suddenly I awoke with such fright, knowing my boobs would be gone

By this time the next night! In a moment it hit me, this is becoming too real.

Nervous thoughts and anxiety rolled around in my head,

I know I have to relax and just get to bed.

 

I am very well prepared and very well prepped.

But, boy oh boy, it hasn’t been easy to take this last step,

Go away cancer, go away forever….

As I now yearn, for it never to return.

 

IVs will be hung by nurses with care and my doctor will soon be there,

He’ll be all dressed in blue from his head to his toes,

My surgeon that is, in his operating clothes.

 

He’ll speak not a word, but get straight to his work.

With a twinkle in his eye, he’ll take them away with his swift sharp knife.

I know it’s for better and mere hours from now, I will look down to my breast,

To see nothing there, but deep cuts to my chest.

 

Now boobs, now tatas, now boobies, now breasts!

Off with these knockers, my hooters, my bosom… my breasts!

To the top of the mountains and valleys low, off now you must go!

Now dash away, dash away and slash away all!

 

A night or two in the hospital and soon home I’ll be,

Where my family and friends will come visit me.

So thanks to you all, at home and found here, as off I go now… praying, “Please find a cure!”

So that these nights before surgery are no longer here.

 

Off I’ll sign now as l get out of sight,

Happy Christmas to all, and to all a good-night!

The countdown begins…

Yes, the countdown to Christmas… only 36 days to go! And, with this Christmas countdown comes my next surgery countdown… with only 37 days to go! Yes, as crazy as it seems, my mastectomy will take place on December 26th, the day after Christmas. Such an odd day to have it. It was the only date both of my surgeons are available before the end of the year. They only do surgeries together at Good Shepherd on Tuesdays and I did not want to wait until January. One surgeon travels the first half of January and waiting longer is just not an option. I need to have this done as close to the 3-month mark (after chemo and 1st surgery) as possible and that would be right about now. My oncologist said “waiting this one extra month is fine, but just don’t wait another.” We need to just remove these old friends, so the cancer does not have a chance to come back.

Keep in mind that this surgery is a bit different than your average boob job. Of which I don’t actually know much about anyway. So anyway, I am told that this surgery will involve removing all remaining breast tissue with docs inserting “expanders” under the chest muscle. They’ll add a few cc’s of saline and sew me back up. This is the start of the reconstruction process. The expanders have a metal port that is used when filling with more saline every few weeks over the course of 3 to 6 months (length of time depends on many things) – you know, kinda like balloons being filled with water. After each fill, your muscle stretches and adjusts to the new size… repeat this until you are at your final size. OMG, weird right? So, I am told that I will be in the hospital for minimum one night, possibly two. I will leave with drains on each side, tubes with bulbs that collect fluids and blood during the initial one-to-two week recovery process. I will be down for the count for a minimum of 3 weeks after this surgery and up to a couple months of light lifting, under 10 lbs. There’s discomfort with each fill, but nothing that a little Advil can’t handle.

Then, after about 6 months after all the fills are done there is one final surgery to exchange the expanders with the actual implants. This is called the Exchange surgery. It is an outpatient surgery and can take place anywhere between 6 to 12 months (or longer) after the final fill. I am told that expanders are very uncomfortable and after the exchange, women feel so much relief. Oh God, this freedom from pain and discomfort is starting to sound so far away…

All in all, it sounds like a lot of work. A lot of discomfort. I am not looking forward to this. There is an alternative to not getting reconstruction, but that comes with its own issues and I am not sure that would be right for me. So, off I go to have this bilateral mastectomy with reconstruction. I have faith that I will one day feel whole again. I will one day feel less anxiety about cancer recurrence. I will one day feel closer to my old self (ahem “my younger self” since I truly feel I’ve aged about 20 years). I think it is possible, okay I know it is possible and I will get there…….. eventually. Right now what I see in front of me is a long… dark… winding road with nice gray clouds over it – BUT soon enough I’ll be seeing this Road as a faded reflection in my rear view mirror. One that I will NEVER have to travel again!

Meanwhile, I am taking my daily tamoxifen and I am about 5 weeks in with no real problems so far. Score! I have had a handful of bad headaches, though, so this might be to blame? And… I do have raging hot flashes which come and go up to 10 times a day and of course at night while I sleep. It feels like the temp in the room goes up quickly to about 100 degrees and just when I start to sweat (yes, real beading sweat that starts on my head, then my forehead and then my face) BOOM it stops! I cool back down quickly and move on! I swear it is probably only a minute or two of discomfort. I can handle this, it’s the least of my worries! Lastly, my only remaining side effects from chemo are the 10 or so (??) pounds I gained along with my puffy face and eyes that do not seem to want to go away. I just look in the mirror and cry. But, hey… this too shall pass (I think? I hope.). Oh, and the numbness and tingling in feet is slowly getting better. There are positive things too… I have good energy most days and do not need naps (haha… most days!) and my hair is growing back in full force! I have unveiled my head just this week which is covered with about a centimeter of hair. While I do feel naked without my scarves or bandanas, it is freeing in some small way. Heck, I’ll take it!

Okay, enough about me! Wow, it’s hard to believe it has been so long since I wrote a blog post. As you may recall I had an interesting birthday, October 7th, with some highs (John’s beautiful gift to me) and some lows (Jake’s lacerated spleen incident!). Well, I am happy to say that Jake recovered well and just started playing hockey again. He is so happy to be back on the ice and with his team. Go Vipers! They played 3 games this weekend and Jake did okay. He definitely has lost his stamina and gets very tired, very quickly, but he is trying hard to give it his ALL. He has a great team and a very patient coach… shout out to Coach John Bailey and Assistant Coaches Matt and Tim! We also have a great team manager who keeps us up to date on everything (and that is not an easy task when these kids play so many games and go to so many tournaments)… so, shout out to Jeff Urso! We truly missed seeing all the wonderful families and kids during the last 6 weeks and are so happy to be back. Final shout out goes to this wonderful Viper family that we are so honored to be a part of! We can’t wait to go to Holland, Michigan, for a tournament in a couple of weeks.  Oh, one more thing about Jake – he made the HONOR roll!!!! We are so very proud of him! He struggles with dyslexia and has had such great help at his schools over the years. He always gives it his best and it has paid off. Go Jake!!

Okay, enough about Jake… onto John now. John is doing about the same and continues to go for his Remicade infusions every 8 weeks now. He just had his 4th or 5th infusion last Thursday. Unfortunately, he’s not seeing any huge improvements which is a bit disappointing. Remember… this stuff has allowed some folks to quickly go into remission and have little to no Crohn’s symptoms – so we had hoped that this would be the case for him. It’s not. But, we have not lost all hope as it could take more time and it has made a dent in his issues whereby he is able to sleep through the night most nights and that is triumph in his eyes. Go John!

I feel like I need to have a paragraph about my dog now as I move through members in this Stanislawski household. So… here’s to Cheyenne — our great yellow lab. She is 10-1/2 years old and doing great! She still acts like a puppy with bundles of energy on most days! She takes good care of me by adding a nice layer of comfort and protection. ♥

We are finally going to Las Vegas for Thanksgiving!! We will stay at Excaliber where we had planned to stay just days after the tragedy that took place there on October 1st. With Jake’s accident we had to cancel my birthday trip. We’ll spend Thanksgiving at my sister’s house. So excited to see them and their new home! We’ll do some other fun things, including taking in a Golden Knights hockey game that weekend. It will be 80 degrees there!! I welcome that! Oh, and John wants to golf, too – who goes to Vegas to golf? Haha… I’ll just have to do some gambling and cocktailing at the casinos while they golf!

On a final note…. I am so glad to continue to hear from some of you via text, by phone, on Facebook or through beautiful cards sent in the mail – your continued thoughts and prayers are so very appreciated. I am grateful for every meal and every gift that was given to me and my family during this time. I have been overwhelmed by the outpouring of love since my diagnosis in May and in many cases have not yet had the time or strength to reach out to you individually to thank you (I bought a large pack of Thank You cards and have yet to write them… grrrr) but please know in my heart… I thank you.

Finally, as we approach this Thanksgiving holiday, I would like to say that I am very thankful for this opportunity to write about my journey. I know not everyone has time to read my long posts and for those who are reading this, please know that I thank you from the bottom of my heart. This time that I spend connecting with YOU and telling YOU what I am going through helps me heal. This can be a very lonely road and your kindness and unwavering support helps to lift me up. THANK YOU!

Happy Thanksgiving!

Xoxo ~ Kathy

My Birthday Surprise…

I had a great birthday despite a few recent challenges over here. Wait until you see what John got me for my birthday! Read through to end.

While it was a rough start to the week with Jake in the hospital for his lacerated spleen, he is doing well and managed quite a few quiet days at home. He went back to school yesterday! No Gym or band for him for now. He had a good day. So, let me just tell you that hearing “internal bleeding” really takes a mom’s anxiety up a few notches. It is heartbreaking to hear. I managed to calm my mind and heart by thinking “it could be worse, he could be in more pain (pain was badm but pain killers helped)… it could have been worse, he could have hurt his back, neck, head…and so on and so on.” Plus, let’s look on the bright side, they ruled out surgery and his hemoglobin did not drop drastically requiring a transfusion. He will be okay after about 6 weeks. Apparently the ol’ spleen just heals itself.

As for me… I’m feeling a little bit more of my “normal” self right now. I am walking more and not getting as out of breath. Baby steps. I took my first Tamoxifen pill Monday. I was nauseous later in the afternoon and I could not figure out why. Well, it might have been the damn Tamoxifen. Who knows? Yesterday was better, but I’m still scared! It seems that most side effects take weeks or months to develop which makes sense as the drug slowly suppresses hormones. The results are not overnight. BUT, I keep telling myself to have faith over fear. Faith over fear, mind over matter…oh so cliché, but I keep thinking these thoughts. Can I keep it up, though, for the next 5… or 10 years? I know I have to do it. It will be nice to celebrate my next birthday cancer free and healthy! I’m still having a pity party that two milestone birthdays, 40th and 50th were not pleasant for me. I will make up for it somehow!!

My birthday was Saturday. It was quite the average day. I helped Jake with homework and did some laundry. John and I planned to go out for an early dinner while Dziadzi and Gaga stayed with Jake. Earlier in the day, I asked John not to go crazy with roses or balloons and/or anything expensive. I’d rather just have a nice dinner together. Regardless of my request, John disappeared for a couple hours that afternoon to “shop” for my present. We do everything last minute around here, so no surprise that he hadn’t shopped yet! When he came home empty handed, he told me he found something but it wasn’t ready and would be here when we got home from dinner. Very mysterious. So, I made several attempts with 20 questions for clues to what it could be. Hmmmm? Was it big? Was it small? Was it expensive? Does it sparkle? Well, let me tell you that I would never ever have guessed! Stay tuned…

You see we have always either gone on vacation for our birthdays (which land 6 days apart) or we buy what we call a “big ticket” item for the house (think TV, couch, grill, etc.) with maybe some last minute little things thrown in like flowers for me or golf gear for him. That is just the way we have done it over the years. Always a good time and never any complaints. This year we were going to be in Las Vegas from Oct. 6th through 11th. With Jake’s injury we were unable to go. We missed celebrating with my sister and family, but we will reschedule for a later time. Meanwhile, our hearts go out to Las Vegas. #VegasStrong

John and I had a great birthday dinner. I had steak and lobster and oh so many keylime martinis! Delicious. Good times hanging with the hubby. Uber ride there and back. It’s only a 10 minute ride, but who wants to take chances when we would both be drinking? Back home early at maybe 8:00 p.m. John gets down on one knee in our family room and calls me over, takes his sweatshirt off and reveals a bandage covering his heart. Huh? What in the world? OMG. I remove the bandage to reveal a TATTOO. Now, if you know John — You know that he does not have ANY tattoos. Neither do I for that matter (can’t count the two dots i have for radiation treatment 10 years ago, can I?). And… let me tell you, it’s not that we aren’t cool. We are! But, over the years when the topic came up neither of us has ever felt a strong enough connection to any symbol, object, word, animal, design, or photo that made us think, “Yeah, I want that on my arm, leg, chest, back, foot, or butt…  F-O-R-E-V-E-R.“ Until now, apparently!!!! Wow! And, yes, I cried. Note the tattered ribbon representing fighting this fight twice… and, well, Strong? I guess I’m really going to have to live up to that now. Thank you, John.

 

Tattoo1tattoo2

What’s next?

Well, it’s been almost a month since my surgery and I am recovering well. I am still very sore and can’t do everything I want to do yet, but improving each day. I do have a little issue with irritation at part of an incision that I am blaming on sweating too much with this crazy weather we have been having. Record breaking high temps at the end of September… crazy weather, we had warmer temps last week than we did the whole summer. I was enjoying it though as it allowed us to get out on the boat Sunday with temps in the high 90’s and perfect water on the Chain. With all the down time this summer first because of flooding and then time I needed off after my last treatment and again after surgery, I welcome this extension of summer! We finally have cooler temps in the 70’s But it is going back to 80’s I hear. I’ll take it. Sure beats winter!

Jake and John have been doing well. Both have been taking great care of me! John continues with his Remicade treatments and had his 3rd infusion last week. Only side effect so far seems to be fatigue. BUT, not a lot of additional improvement yet. He was hopeful at first and has noticed some improvement, but after a couple months I think we expected more. Just needs more time I guess. Fingers crossed…

As for Jake, well his braces look great and his first choice for rubber band colors was teal and orange (can you guess? Yes, Miami Dolphin colors). Unfortunately, he continued to have pain almost the whole month since he got them. Poor kid! I told him the pain only lasts a few days after each tightening… I guess I am wrong. Darn it. He saw orthodontist yesterday and so far he has not had much pain. Yay! He got pink rubber bands for October’s breast cancer awareness month. Sweet kid. He also put some pink hockey tape on his stick and pink laces in skates. Teams tend do this every year in October, so he is certainly not the only one. Jake has had to miss hockey practice for about a week and he missed playing in his first game on Saturday due to a foot injury. Well, it really wasn’t an injury but more of an overuse issue with the ball of his foot. The podiatrist took an x-ray and while he doesn’t really call it a fracture, he did say that the bones in ball of foot kind of separate a bit and become inflamed. This is called sesamoiditis with the sesamoid bone which is in the ball of the foot.

Sesamoiditis is a common ailment that affects the forefoot, typically in young people who engage in physical activity like running or dancing. Its most common symptom is pain in the ball-of-the-foot, especially on the medial or inner side. Like other bones, sesamoids can break (fracture). Additionally, the tendons surrounding the sesamoids can become irritated or inflamed. Sesamoiditis is a form of tendinitis. It is common among ballet dancers, runners and baseball catchers. Pain is focused under the great toe on the ball of the foot.

He had to wear a big boot, iced it few times a day and took Advil. If you know Jake, you know how hard it is to keep him still! Even harder… he watched his first hockey game of the season from the bench. AND, we do not own any video games so he played some games on the iPad to keep himself busy! Thankfully, it has improved and seems to be completely resolved now and was able to attend practice on Wednesday. He is excited about playing a game on Sunday. Can’t wait! Go Vipers!

Some call chemo the gift that keeps on giving. Chemo has cleared out the cancer tumor and presumably any rogue cells that could have spread through the lymph system or bloodstream. For that I am grateful! Chemo has taken my hair, my eyelashes and most of my brows, and has left me with neuropathy in my feet and toes and slightly in my fingertips. Just numbness and tingling in your toes as though they “fell asleep” — once in awhile a couple of pins and needles spark some pain, but that goes away quickly. Doc says this will not get worse, and should only get better with time – thank God. Some people have to take medication for the rest of their life for this and I am truly grateful that mine is mild. My leg fatigue has improved since my last treatment and they no longer feel heavy like lead. Gatorade helped with that!! I am able to walk more each day and the neuropathy definitely does not keep me down. Chemo has taken my energy, but not my spirit.

It turns out you never really have life without cancer after having cancer. Sure you may hear the words, “cancer free” or “No Evidence of Disease/ NED” or sometimes even “in remission” but I tell ya after having cancer twice, you just don’t feel that you will ever truly be free from it. There’s always something reminding you. My latest visit to my oncologist on Tuesday has given me another blow. It turns out that my original pathology report had shown about 10% of cells that had Progesterone receptors. Because it was so low, they considered me “triple negative” and I was given standard of care or treatment for Triple Negative. The chemo did the trick and the tumor is gone, no lymph nodes involved, and presumably there are no cancer cells left in my body because of the chemo. So… with having a full mastectomy, you’d think I would be done. Done. Done. Done. Well, I’m not!! It is recommended that I take Tamoxifen for 5 to 10 years. I feel like I was just diagnosed all over again with breast cancer. I was treated for one type of cancer and now I will be treated for another type of cancer. It appears that this will just be a precaution in case there are any cancer cells lurking and/or any new cancer cells in the future that are progesterone receptive (PR+). While Tamoxifen is usually for those with estrogen positive (ER+) cancer, it apparently is also used for PR+ cancer. Now remember, my body seems to create negative receptor cancer… not ONCE but TWICE in my lifetime and, well, there is no way to absolutely, positively, keep that from happening again. Tamoxifen won’t help with THAT type of cancer. There are no medications that will help with THAT type of cancer. Ugh…  So, much to my dismay, I pick up my prescription tomorrow. I’m not happy as there can be some vicious side effects. I will begin taking Tamoxifen as a precaution. And… I will just take this day by day and see what happens.

On the bright side (which is the side I always prefer)… my hair is growing back!!!!! It is a mix of light and dark. Right now it is peach fuzz or like feathers on a fluffy little chick.  Chemo kills the hair follicles so when it starts growing back it is baby hair at first. Here’s hoping it continues to darken up a bit; I can definitely do without the gray!

Overall, this cancer journey has been so very different this time around. I have anxiety and worry now about cancer coming back. I feel mutilated by surgery this time around. I am trying hard to stay positive, but that can be exhausting. I am trying to keep busy. I am trying to exercise daily. I am trying to spend more time with family and friends. Yes, I have beat this, but I feel like I have to continue to fight it daily for the rest of my life.

Now for some bad news and good news about my birthday coming up in less than two weeks… First, the bad news is I am getting OLD!! Grrrr…. No fun! Now for the good news — I am going to make the best of it and we are going to Las Vegas! Remember, we were trying to go somewhere tropical… Mexico, Caribbean, or Florida but due to hurricanes and tropical storms, we decided not to book anything in those areas. Decided on Vegas and we are staying at Excalibur. I tried to think of hotels that Jake would enjoy and there are some pretty cool attractions at some of the hotels on the strip. I decided that since he loves Medieval Times, Excalibur would be perfect. Also, my sister and her family lives there now and we are so excited to see their new home and hang with them as much as possible! Then, aside from a little gambling here and there and seeing the Tournament of Kings dinner show at the hotel, we are going to see a Golden Knights hockey game and do a lunch or dinner cruise on Lake Mead. I am most excited about having a few drinks and relaxing by the pool. Oh and I hear there are some good buffets there — and well, that will probably be the highlight of the trip for me!! Hahaha! Should be fun!! I’ll write again in a few weeks when we return. Have a great weekend everyone and thank you for continuing to read my updates!

Got the news today…

After waiting a long five days, I got the news today.

I was told I would get the results yesterday… of course with the holiday Monday there was a delay! Always something, but I will take these tiny little disappoints especially when there is GOOD NEWS! I called doc yesterday and the results were not in at noon. I waited and waited all afternoon, but no call. I called again this morning and nurse said the results were in and she would have the doc call me as soon as possible. Well, doc was in surgery all morning, so more waiting… tic toc…

Don’t get me wrong, I wasn’t too miserable while waiting. I managed to keep my mind off of it because I was able to drive and I ran some errands! I was in Hobby Lobby (yes, that is an errand!!) in the restroom (albeit I was finished and ready to leave) when my “other doctor” my oncologist called me and said he just received the report. EVERYTHING WAS CLEAR!!! Just perfect results. Clear, clear, clear! Our prayers have been answered. This is everything that I had hoped to hear. Doc said, “My chemo (meaning HIS chemo choice) worked and there is no evidence of cancer left in the tumor and cancer did not spread to the lymph nodes.” My response was “Thank you so much! I am thrilled to hear this! Exactly what we were hoping for!” which echoed back at me in the very large restroom at Hobby Lobby (where I was the only one in there, thankfully). I will see my oncologist for a follow up in a couple of weeks. Then about an hour later, now I am at Kohl’s… and my surgeon called with the results (he was the one who I should have heard from first) and I did not tell him that I knew already. Shhhh…. He was just so happy and was thrilled to tell me the GREAT news, so I proceeded to tell him how happy I was (as though I had not learned the great news an hour earlier!!) and I thanked him for his call. I will follow up with him in a few weeks as well.

I’m so happy! This means no more chemo. Yay! And… as far as my recent surgery, I am on the mend. Feeling better daily. I got the okay yesterday at my follow up appointment to drive, shower, sleep in my bed (as opposed to the recliner), and to start walking a little bit each day. Can I tell you that I barely made it to 800 steps each day since surgery!! Today is the first day of really moving around and I did a lot of walking during my little shopping spree, so now I am really really tired. I sure got a lot of rest these past 5 days, but that is what I needed to heal. My daily movement consisted of going from recliner to bathroom and back to recliner (20 steps maybe?) and then recliner to kitchen and back to recliner (20 steps round trip). I cannot lift anything too heavy and can begin walking my hands up the wall to stretch the arms a bit. The only really sore spot is under my left arm where he removed lymph nodes. I do have some pinching and stabbing pains sometimes, but that is not a bother as it comes and goes pretty quickly and is not very often. Otherwise, I am doing just fine.

Now it is a matter of recovering fully from this surgery and in 3 or more months, a full mastectomy with expanders placed under the chest muscle, followed by implants 6 months later. Yes, a bit TMI, but I figured you know so much already why hide all the other fun stuff. This 2-step surgery process was recommended to me for several reasons related to the size of my breasts and skin that was already radiated 10 years ago. It is our hope that my skin and everything will heal up nicely before the full mastectomy. It is not fun to think that there is another surgery in my future. The next one definitely has a longer recovery period, but I really do not want cancer to come back so there is no way around it.

My plan for the near future is to take my vitamins (D is the most important one right now!), exercise and make better food choices. I am quite tired of looking like a stuffed sausage and my face and neck blew up like a balloon from my treatment. Being bald does not help this “new look” either.

On another note… remember how I had BIG plans for a tropical vacation to Cabo San Lucas, Mexico, in October to celebrate my BIG birthday??? Well I am now putting this destination on hold for a few reasons…  First, Cabo was supposed to be the destination for one main reason to see Sammy Hagar during his birthday bash concerts which take place every year the 2nd week of October. Just so happens to coincide with my October 7th birthday and then Sammy and John share a birthday, October 13th. Sammy is turning 70! OMG! Those who know me, know I just love his music and his attitude and had plans to go for my 40th birthday which was ruined by my previous cancer diagnosis. So this time around, I was certain to make it happen if I was cleared by docs to go. So in the past several weeks, I tried no fewer than 8 different times to get tickets, first by registering for each of 4 concert dates in his “lottery” system. No luck! Then, in the second-chance lottery for those who did not claim their winning tickets from the first go-round – for each of 4 concerts!! Again, no luck! So frustrating. I also had a friend who was trying too and had no luck either! She has gone several years in a row and this year the competition was tough. Too many people and not enough tickets. Oh and there are those who say you might have a chance at getting dinner concert tickets if you camp out in front of Cabo Wabo Cantina for days before they go on sale. Yeah, sorry… I am not in any condition to camp out for tickets. So… for that reason and the fact that there has been some crime and that whole tainted alcohol thing going on there, Cabo has lost its appealo appeal for me right now. Oh, and not to mention — there are dangerous tropical storms and hurricanes that keep popping up there ! Not a great time to travel to Mexico or anywhere in the Caribbean right now. BUT, I still want to go somewhere for my birthday, so I am trying to think of something that we could do. Still thinking… but, I am sure we’ll figure something out!

Thank you all for following along and keeping me in your thoughts and prayers. I feel it. It keeps me going when I feel like I want to just curl up and cry. I read through your comments and it lifts me up. So thank you for that! I cannot believe how many wonderful people have provided fantastic meals for us. Thank you! Thank you! Thank you! John asked me one day if I tell people that he is a bad cook. Ha ha ha! I laughed an evil laugh… of course not, John! He, in turn, said he was surprised that there are so many people who care about me. Touché John, touché…

XoXo

Kathy

Great news!!

Great news! I am moving from chemo to surgery! After four rounds of chemotherapy, I am done. Yay! Yippee! Yahoo! My original doc appointment with my surgeon was scheduled for last Friday and 5 minutes before I was to leave my house, I get the dreaded call that doc was called for emergency surgery and needed to reschedule for “next Wednesday” and boy did that take the wind out of my sail! I had looked forward to that appointment, on Friday August 18th, for over 3 weeks and now it was moved back 5 whole, long, miserable days… I wanted good news that day so I could start celebrating over that weekend. So… Wednesday finally came yesterday and I was off to the doc for my ultrasound. The ultrasound seemed to still show “something” but doc determined that because it was shaded a different hue of gray that the tumor had shrunk significantly. Likelihood that most of what we are seeing are dead cancer cells. Yay for dead cancer…  And who am I to argue with him as he sees these things daily for over 25 years, so I am gonna take his word for it!! He said he is ready to go in there and take it all out and have Pathology take a look under the scope to see what, if anything, is still there (meaning any live cancer cells). He’ll also remove one to 3 lymph nodes to check those for cancer. I am praying that everything comes back clear. Clear nodes, clear tumor margins and nothing but dead cancer cells. So Thursday, August 31st, at 7:30 I will report for surgery and go home later that day. I should have all these answers that day! These answers will determine if I am done with chemo or have to endure more after surgery (if so, it will likely to be a different drug, however, which could have different side effects). There might also be radiation needed IF, and only IF, any cancer had spread to the nodes. So… we all know that this is NOT what we want. We want CLEAR, CLEAR, CLEAR!! Which I am pretty sure we are going to get!!

I honestly do not think I could have handled another cycle of this chemotherapy (which would be next Tuesday already) as this last one did me in. I cannot remember it being this bad 10 years ago. Although it is a different concoction and I am 10 years older, so who knows…  I just know that this time around the fatigue is kicking my ass. I am so tired after just being awake for 6 hours (and not doing much!), then I just need to lay down and nap for two hours. I’m sleeping well at night and having a hard time waking up! Then to add to my issues, walking even a short distance and I am out of breath. My legs feel like I have no muscles in them — did muscle atrophy occur literally overnight!? My fingers and hands and toes and feet are still numb and tingly (which previously disappeared after about 10 days… not this time!). I had said 10 years ago that this treatment ages you about 20 years… then you maybe gain back 10 years after you finish treatment (but you never really feel yourself again!). Now doing it all over again really sucks. So, just like I thought I will need to build myself back up from here. I am trying to walk a little more each day and hope that helps. After my surgery next week and few days needed for recovery, I will be able to walk more and go to the gym to add some weight training in. I guess I will have to eat better, too, in order to really feel my best. And as long as I have no more chemo after surgery, I can look forward to my hair growing back and that is a nice plus!

Despite feeling the effects of this last cycle of chemo, I was able to enjoy myself on the boat last Saturday. Unfortunately, I was not up for going out on Lake Michigan for the air show, so we went out on the chain. The boys didn’t complain too much about missing it, although I did feel bad. The chain was great though. It was the perfect weather and perfect water conditions! Jake was able to wakeboard quite a bit and he spent a little time tubing too. So fun! Well more fun for him, but it really is exciting to watch him. He literally has a smile on his face the whole time! I love it. Made for a wonderful day. The sun was shining, there was a nice cool breeze… and smiles all around me. Perfect day!

Jake started school yesterday and when I asked him how his first day was, he answered, “Fun” – how’s that? I love that this kid really likes school! He likes all his teachers and being back with friends. He got his tooth pulled Tuesday and all went well. He’ll be getting braces on next Tuesday. John has his 2nd Remicade treatment yesterday and that seems to be going well. He has had success so far with it and feels confident that it is going to work for him long term. That is really exciting for him (and all of us, really!). Okay, that’s if for today’spost. I will post next week after surgery. Thank you all for your thoughts and prayers — I can really feel it!

Summer days, drifting away…

Well, Tuesday the 8th was hopefully my last chemotherapy treatment. Only 4 cycles seems great compared to what many others have to do. I remember doing 8 cycles every 3 weeks of one chemo drug followed by 12 weekly cycles of another back in 2007, but they were different medications and different doses. And, after this 4th treatment his week — I do not feel great. I definitely see how this has a cumulative effect as each cycle builds on the other. You feel worse with each one. It’s like knocking you down and then you can only build yourself back up so much before being knocked down again. Then again… and again. This one has me feeling very tired, nauseous, swollen, boated, and just overall feeling crappy. I am still up and about and getting out of the house, but that is because I know I would feel worse emotionally if I just tried to lay in bed all day. I just can’t seem to do it. I think that would be my demise if I let the chemo take my head…. My Mind, as it’s already taken my warn out body. I just cannot let that happen.

My next step… I will have an ultrasound on Friday, August 18th and if no evidence of tumor, I will be scheduled for surgery on 8/31 and I will know after surgery if cancer had spread to any lymph nodes. I will then have better idea of stage and any additional treatment that might be needed. I won’t go into all the details about surgery, but it should be a pretty easy surgery as I will go home the same day. It will only be the 1st step in a 3-step process that will take place over the next 9 months. I know… a long… drawn out process. That is not great and timing might suck with holidays, etc. but there are some reasons that it is not just a cut and dry mastectomy with reconstruction in one step. There’s a lot of healing that needs to take place in between certain steps and I am just going to go with what my surgeons have advised as I truly feel confident in them. The bright spot in this surgery schedule is that I might, just might, be able to go on a vacation 5 weeks after the surgery! I am hopeful!! We would go to Cabo San Lucas as this is a destination that I tried to go to for my 40th birthday in 2007. As I was planning that trip many years ago, I was diagnosed with breast cancer and my world turned upside down. Over the years, I have held strong that I can wait until my next BIG birthday and plan the same wonderful trip to Cabo for my big 50. OMG. I can’t even believe I will be 50. So as this past Spring approached, I started to look up info in between my dentist and doctor and mammogram appointments and interviews for a new job after being laid off in March – and started to plan that family & friends trip in October for my 50th… AND, Well, you know the rest, I was diagnosed once again with breast cancer and my world turned dark and upside down once again. Seriously… can I get a break here? So now, there is a possibility that I can still make it. I am not sure if I can plan it on such short notice and the cost might be a bit much, but if I am feeling up to it I will make it happen!

Meanwhile, I am busy running around trying to enjoy the last bit of summer and getting Jake ready for school which starts on August 23rd. So far we managed to get in an orthodontist consult this week and he’s ready for braces! Yikes… Cha ching… always something that costs money with that kid! LOL 😉 But it is time. We have to get one of his baby molar teeth pulled first as it is not budging at all and could cause more issues if we don’t get it out soon. I’ll see if they can get him in next week for that. Then braces in a few weeks. Exciting! Jake is nervous. Also, Jake will attend band camp in the mornings next week at Grayslake Middle School. Yes, he’s a 7th grader?! How did that happen? Anyway… band camp is just a way to get them back into playing their instruments together before school starts. It sounds like they make it a lot of fun. Jake plays trombone and has enjoyed it the past couple of years at Frederick and really wants to continue. Then, school starts the following week on August 23rd. Summer is officially over… makes me sad as I do not feel we did nearly enough this summer. Our time on the boat was limited mainly due to the flooding out here, but also because I was not feeling great on some days. Oh well… there’s always next year, right?!? And… quite frankly there is a lot of time left in September and October on the chain and on the river where the leaves are changing and all you need is a nice warm sweatshirt! The crisp clear air and nice breeze makes for a perfectly peaceful boat ride to have lunch or dinner along the water. I am hoping we can make this happen at least once.

In between all our fun stuff, we kind of have another patient in the house… yes, John just had his first IV infusion of Remicade for his Crohn’s disease. For those who know him, you know how long he has suffered with it. He was diagnosed at age 13 with emergency surgery that was presumed to be appendicitis. Instead they found evidence of Crohn’s disease in his intestines and removed a couple of feet as well as his appendix. He spent a month in the hospital back then. For many years he managed his Crohn’s by eating the “right” foods, but had a hard time keeping weight on. Then at age 31 he had to have surgery again where they removed several more feet of intestines. He tried medications for over a year prior to that but nothing helped. Being on prednisone for over a year was not fun for him (or anyone around him, really!) and some other drugs he tried had terrible side effects and did NOT improve his symptoms. He did fairly well after that surgery and in the past 10 years he has been working out and drinking protein shakes and was able to put on some weight. Yeah, you’re thinking nice problem to have when you can look forward to gaining weight! But, truly, I would not wish this disease on anyone. So during the past few years he has maintained a healthier weight and aside from using the bathroom way too many times a day, he has felt pretty good most days… Until recently when he has been having more issues than usual. So… he decided it was time to go back to the gastro doc and of course he was way overdue on colonoscopy so that was the first step. The colonoscopy showed areas with full blown Chron’s and clearly shows that John does need treatment. New doc is awesome, an older guy that has been around through years of changes in Chron’s treatment and medication through the past 30+ years. The best news is that John actually likes the guy! He really does not like doctors, so this is a huge plus. Doc said surgery and steroids were the main ways to treat this disease years ago, but he has worked with Remicade for the past 10 years and highly recommends it! He has had many of his patients go into full remission and lead normal lives. This has convinced John to give it a try! Of course any new medication comes with potential side effects, so he worries a bit about that, but if the good outweighs the bad it will be life changing for him. I will add some quick updates on John as I continue to post my own updates. He goes again next week, then 4 weeks later and then moves to infusions every 8 weeks for life if all works well. Again, while I know many of you know John and care about his progress, those who don’t might still benefit from the Chron’s and Remicade info whether for themselves or others they know.

A lot going on and I am a bit overwhelmed. I can’t even imagine how I did this 10 years ago with a two year old in tow, while working full time, AND getting my masters degree!?!? Crazy then… crazy now, just in different ways. I continue to rely heavily on my super support system made up of family members and friends who are sending things, calling me, texting me and bringing me wonderful meals and gifts. Always asking me if I need anything. Thank you. You are providing me with so much and it is a plus to know that I could text someone at the spur of a moment to pick up an emergency chocolate shake from Culvers for me! 😊 Hmmmm… that does sound good right now! Hey, it’s the little things sometimes…

Until next time, enjoy the rest of this beautiful season! XoXo ~ Kathy

Living it Up!

Hello everyone, I hope you are having a great week. It sure has been awhile since I last posted! I have been busy.  Busy… living. Living life. This week I tried to do something different with Jake each day to enjoy the nice summer weather and get in as much as possible before school starts in 3 weeks. I know I won’t feel great next week and the following week, so this is our last hurrah! So far this week we went to a beach in Racine Wisconsin, Hurricane Harbor and Independence Grove. Yesterday was just some errands and a follow up doc appointment. Today with the weather not being so great we are going to try Mod Pizza for lunch and see a movie this afternoon. Then tonight we will have dinner and spend time with my in-laws. Tomorrow, if weather holds up, we are hoping… praying… that we can get out on Lake Michigan with my family. My nephew Alec is in town from Vegas. I can’t wait to see him!! It’s been a few months and I miss him. We really can’t go on the chain of lakes yet because of the flooding. They are likely opening up the Chain  tomorrow, but the water will have debris (trees, logs, etc.) and could pose a risk for boating until fully cleaned up. I think we will wait it out. Hopefully if I feel “okay” next weekend we’ll get out there a couple hours at some point if weather permits.

A couple weeks ago, right after my 3rd chemotherapy treatment, we went to the Blackhawks Convention. I had bought this for John and Jake for Christmas! We missed out on pub crawl for John’s cousin’s 50th – Sorry Chris!  We would have been there if we could! Anyway, we had a lot of fun downtown at the Hilton at the convention, although I am not sure I would do it again. Maybe it was because I was not feeling my best? But, I think it was just too many people, lots of waiting and more waiting and feel like we missed out on some of the things we wanted to do and see (most likely because we were waiting somewhere else for something else!!). But all said and done, it was a good time. Jake brought his friend, Antonio, and they seemed to have a lot of fun together. Everyone bought a few Blackhawks jersey, t-shirts and hats at really great prices. We got some autographs, photos and handshakes with Blackhawks we admire, including Coach Q. Very cool!

I felt pretty good the whole weekend and kept up on all the meds needed to keep me from being too nauseous and from having severe bone pain from white cell medicine (Aleve is the answer!! Only one pill every 12 hours kept the pain away… happy dance!). I managed to nap when needed, but I also think I got my nights and days mixed up because I felt like I couldn’t sleep at night! Not the worst problem to have, right? I felt pretty lousy for far too many days this time around. I seemed to have no energy for like 10 straight days! I napped for two hours each day last week and was so thankful that Jake had afternoon Sports Camp in Libertyville during that time. Finally this week I am feeling much better. BUT, I only have today through Monday before my next (and hopefully last treatment!) on August 8th. Let’s hope that after this “last” treatment which will be followed by a breast MRI about a week later (maybe two weeks to give it more time), and will hopefully show there is no evidence of a tumor left. If that is the case, then I will be cleared for surgery to remove the tissue where the tumor was and some lymph nodes to check to see if any cells had spread. The surgeons look for clear margins and in cross section will hopefully only see dead cancer cells with nice clean (clear of cancer) cells surrounding where the tumor was. AND, prayers for no lymph node involvement…. Which means no cancer cells (dead or alive) in any of the few lymph nodes that are in the armpit area closest to the breast. This would be the first of 3 steps. The full mastectomy would take place 3 months later, in December, just in time for the holidays. Yay… ugh… that will not be fun, but there should be no reason to delay it as we do not want cancer to return. If no clear margins or any live cancer cells, I may have to endure more chemotherapy prior to scheduling surgery. I cannot feel the lump at this point! So, I am 99.9% sure that this chemo has killed it. Slaying cancer one day at a time.

On another note… i

 

t amazes me how once in awhile I will run into someone who will notice that I have a bandana or scarf on and therefore going through chemo (let’s face it… it is not a good look and definitely not a fashion statement most would sport if they didn’t have to! But, I don’t wear my wig all the time because of the weather, etc.) and they will stop and ask me if I am going through cancer treatment. They seem to feel inclined to stop and ask because they, too, were once in my shoes and want to assure me that they came out the other side and are alive to talk about it. The first time this happened was in TJ Maxx and a lovely older lady asked me and started telling me her story. She started to tell me how my hair will come back and how you may never feel normal again, but you get through it and you will beat it. I stopped her mid-sentence and said, “Yeah, yeah, I know… this is my second time around as I have gone through this a whole lot of years earlier… and I am now doing it all again.“  I felt bad afterwards, like I burst her bubble as she was trying to be helpful and caring. At the convention while shopping for shirts and hats, a 42 year old woman came up to me and said the same thing. “Excuse me, I don’t mean to assume but are you going through chemo? For breast cancer?” She had breast cancer a year ago and went through chemo and a bilateral mastectomy. She assured me my hair will grow back and might even be thicker and curlier than before. She said it will take about a year to get through all the steps. You might still not feel yourself after that. She gained a lot of weight and still dealing with some recovery from her surgeries. So….  I just listened, asked her some questions, told her about my current situation, and thanked her. I had tears in my eyes as I described what I was doing and I told her that I would be having a bilateral after chemo and she gave me some good tips on recovering from the surgery. I told her I appreciated her approaching me and giving me such great information in such a short period of time. She wished me the best and we went on our way. Interestingly, I do not recall any opportunities over the past 10 years to offer someone the same. I guess that’s a good thing! Statistically 1 in 8 women will be diagnosed with breast cancer.  Or…  in my case twice in a lifetime which hopefully means that one other woman has been spared.

Sorry for the long post. I should just write short posts more often? I’ll give that a try soon. Meanwhile, I want to finish up this post with some things that have really brightened my days the past couple of weeks. I look for every chance to laugh and smile and sometimes that is hard when you don’t feel your best. I have to thank so many people who have brought and sent wonderful dinners, including desserts! Wow… I just feel very special when my friends and family take the time to do this. I have received gifts, cards, along with a prayer card too! I thank you for thinking of me and including me in your thoughts and prayers. I am planning to write thank you notes at some point…  but, in the meantime, my hope is that everyone takes a few minutes to read this and knows how much it means to me. I also want to send out a huge THANK YOU for a lovely Prayer Quilt given to me by a dear friend, Tina Coleman. This prayer quilt is made by The Prayer Quilt Ministry of Joy! Lutheran Church in Gurnee. A beautiful quilt shown in the pic here and wonderful words “Please pray for strength and endurance through the treatment, for complete healing and health, and for support for her husband and 12-year old son while she fights.” During a church ceremony on 7/23 (unfortunately I was unable to attend), the Church members walk up to the quilt and choose a loose pink thread and tie a square knot and while pulling the knot tight they say their own prayers for me. I am humbled by this beautiful gesture and by the prayers spoken by people, some whom I have never met, that are part of this wonderful Joy! Lutheran community. Thank you with all my heart.

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