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…