Month: August 2017

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 18^th, 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 31^st, 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 2^nd 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!

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

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 3^rd 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 50^th – 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 8^th. 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.