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