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!

1 thought on “What’s next?”

  1. Were glad to hear you are feeling better. It takes time. Have a wonderful trip. We took the kids there and we had a great time. There is a lot to do. We wish you a happy birthday. Ugh on the 50 but what can we do. 80 is approaching fast and I’m not too excited. Take care and again have a wonderful trip. Prayers are still coming your way. HAPPY BIRTHDAY!!!!! lOVE YOU GUYS. U.JOHN & A.TERRI

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