Health Update - May 2019

Hello! Remember me? Yeah, I know it has been awhile since I’ve written to you. All good though right? Still friends? Just needed a little break, but I’m back to provide an update on where I’m at. In this interview with myself, I’ll be bringing you all up to speed on the last 6 months because you can’t believe everything you see on Instagram.

WHERE DID WE LEAVE OFF?

The last update you had was in November 2018. I had just received the results of my PET scan and brain MRI. All three spots on my brain were gone. My liver was still clear. There was minimal activity in my left breast and lymph nodes and my sternum bone was damaged, but also showed minimal cancer activity. This was very, very, very good news! I was in a euphoric state after receiving this news. An experience you’ll have to wait to hear about in another post. My family and friends I imagine, were very relieved. My doctors were amazed of how quickly I responded to the chemo pills prescribed. They had rarely seen someone respond this well in such a short period of time.

WHAT KIND OF SIDE-EFFECTS DID YOU RECEIVE FROM THE CHEMO PILLS?

When the cancer flared up again in August, I was devastated. It crushed me both physically and mentally. Although the chemo pills (Xeloda) I started kicked the cancers ass quickly and drastically, it took a toll on my body. They started me on such a high dose, I was nauseous for 2 weeks straight. After about 9 days I had severe diarrhea— I know TMI. It was very bad. I was barely able to eat for 2 weeks and lost about 5 pounds. I developed mouth sores on the inside of my lips— super sexy. The bottoms of my feet and palms of my hands were tender and sore. I couldn’t get through a yoga class or even open a door with out struggle and pain. My red blood cells and iron also dropped drastically over a month, leaving me very tired all the time even with minimal activity.

WHAT DID YOUR DOCTORS DO?

After that 2 weeks my doctors dropped my dosage and increased the length of time in between taking the pills. Instead of 14 days on 7 days off, it was 7 days on and 14 days off and dropped my dose to 1/4 of the original dose. This was in September.

HOW LONG WERE YOU ON XELODA?

The goal of my treatment plan is to find a protocol that I can be on for years with minimal side-effects. Xeloda definitely wasn’t it. Once I got the nausea and diarrhea under control it was more bearable but it was still impacting my quality of life. My goal of living with cancer is to be able to do the things I always have. Not being able to do yoga, go for a long walk, or hike a mountain was just not an option for me. In December, a blessing in disguise occurred. In hindsight, as stressful as it was, it was a great thing when BC Cancer took away my funding for Xeloda.

WHY DID BC CANCER TAKE AWAY YOUR FUNDING?

To be fair, Canadian health care is pretty great. Having to pay for the treatment I’m on would bankrupt me. Although, when you are churning through the system as you are when you have cancer, there are a lot of rules and bureaucracy to maneuver through. Even though my current doctors weren’t assigned to me through BC Cancer, the treatment plans need to we assigned to patients in a waterfall way. You have to do number one before you can try two and you cannot skip to 4 from 1 because that is not their researched order. My doctors, much of the time, can get away with trying something out of order. With so many people in system it sometimes goes unnoticed. I wasn’t so lucky.

The treatment I was on, Herceptin and Pertuzemab needs to be renewed every few months. Of course my doctors also have to document what they prescribe even if they are breaking the “rules”. Well, when my treatment came up for renewal I got flagged and put under review. Not just the Xeloda, but my entire treatment protocol was at risk of being de-funded. Yep! They were going to essentially take away my free healthcare. This is where my doctor had to be creative and wordsmith our way out of it to build a case. My file was sent through two review boards. The first one is the Tumor Association. They look at the results. From these results, they could see that the Xeloda had knocked down my cancer down to almost nothing in a very short period of time. They approved the coverage of the full treatment plan. Next it went to the BC Cancer Board (I really am not sure what they are called). These people are the top of the food chain. The ones thinking about the money. I wasn’t allowed to receive treatment until they made a decision. It was quite a stressful time waiting for a decision that was completely out of my hands. They came back about a week later and approved me to continue on the Herceptin and Pertuzemab, but if I wanted the Xeloda, I would have to pay for it myself. I decided since I was doing so well, I would not continue with Xeloda. It was not a quality of life I was comfortable with because of the side effects.

Then what happened?

I went to Mexico! After that week of waiting, being scared and wondering all the “what ifs”I booked a trip to Cabo and in less than 36 hours, I was gone. At times, I have a tendency to ignore tough decisions I have to make if it isn’t life or death. Yeah, I know what you’re thinking, this seems like it would be. Technically yes, it has to do with me living ,but at the time there was low activity, I didn’t want to be on the Xeloda long term anyway. It was Christmas time so was easy to ignore my doctor’s advice to make a decision. He left on vacation and so did I. I needed a life break and there is no better place to take it than a place filled with sunshine, beach, and ocean. Thanks to an introduction from a dear friend, I had one of the best solo vacations and met so many amazing people. The Mexican energy is focused on family, quality time and celebration. It was the perfect place for me to recharge to a level where I felt comfortable making a life decision. Oh! I also swam with whale sharks on Christmas day. How’s that for new Christmas traditions. I’m thinking about hanging out with monkeys in Africa this year.

So what was your decision?

I decided to stay off the Xeloda until my next PET scan in early February. I had been feeling so amazing for 2 months. I just really wanted to see what my body could do on its own now that the cancer dissipated. A test of sorts. Risky? Maybe, but how else am I to know whether my body has changed. Maybe it is stronger now. Maybe my immune system has repaired and decided it can fight the intruder now. Know one knows what my body is capable of. It could happen!

My hands and feet went back to normal before the year ended and I came out swinging in 2019. I started back at work full time and started the year reflecting on the crazy journey that I just made it through. There is something about that turn of the New Year—well at least there used to be for me. My new year began on January 24th. 1 year after I found the lump in my breast. My cancerversary.

So what did the PET scan reveal?

About mid January, I started to feel tender in my sternum bone. When I flexed my chest muscles I felt that familiar soreness and pain. It was only slightly there, but I knew. You become so in tuned with your body when you have cancer. It’s a body awareness that I have never had before. You pay more attention to what makes you feel good and what doesn’t. When it came back in August, I made up every excuse to make myself believe it wasn’t the cancer. This time, I had very little doubt in my mind. I had about 3 weeks before my PET scan, so I waited and watched my tumor markers gradually climbing until one week they doubled, and continued to double in the weeks after that. I received my scans results back and the cancer had come back at a severe level in my sternum bone and travelled up into my breast bone. But I already knew this— I could feel it and it had gotten a lot worse than it was 3 weeks earlier. On a positive note though, the cancer had completely cleared from the rest of my body! Cancer works in mysterious ways. MRI of the brain was still 3 weeks away.

Can you describe the pain?

I have developed a pretty high threshold for pain this year but any level of prolonged pain can wear you down bit by bit. My positive attitude slowly started to fade. My stress level at work started to rise. I wasn’t taking things with ease and letting it roll off my back like I had been since I started back. My emotions were running high and the tears were sitting right behind my eyes ready to fall with the slightest trigger. I was also becoming quite tired.

But the pain… Imagine getting stabbed. Yeah dude. Stabbed. The cancer in the bones was inflaming my entire chest bone on the right side. The chest bone is one of the largest muscles in the body and is used for more than just the chest strength. When I lifted my leg I could feel pain. Sitting up in bed…forget about it. Coughing and sneezing were medieval torture. I had developed a massive knot in my back which connected right through me to my chest muscle. Every time I coughed or sneezed, there was a stabbing feeling that felt like it went right through me. This was almost always followed by a scream of pain and tears coming to my eyes, I’m so fortunate it was not allergy season. I had pain meds but they made me so drowsy and I couldn’t take them during the day while I was working.

What was next?

During all this my cancer consultant Anthony came back into the picture. I knew my doctor was going to want me to go to number two on the treatment list and I needed some guidance through making that decision. The Herceptin and Pertuzemab combo was not working any more. It needed some help. The Xeloda helped but I couldn’t be on it for years. I was on a short leash with BC Cancer and they would likely take them away soon as well seeing that this was the second time it has flared up in 6 months. My doctor is amazing. We have been together for a year now and are as close as a doctor and patient can be. He always works with me and never forces anything on me. He makes sure I have all the information from his perspective. So when he got stern with me about changing my treatment I knew I had a tough decision to make.

Change is never easy. I didn’t want to give up my current treatment plan. It was the least toxic to my body and that has always been my top priority. The new treatment has a small dose of chemo in it and since my goal is to find a treatment I can be on for years, it means chemo is in my body doing who knows what to my insides. What it came down to is my brain. I had not yet had my brain MRI but the thought of the cancer catching hold up there again scared me. My doctors aren’t too worried about my body. They know they can keep it under control. The brain can only be treated with radiation and so far I have been lucky to just have targeted radiation that doesn’t seem to have had an impact. If it got to a point where I needed full brain radiation, because the cancer spiderwebs itself, then it would alter who I am. The brain is where they lose patients.

After careful consideration of all options both natural and pharmaceutical with Anthony, I decided to start the new treatment 3 days later. Anthony and I changed up my supplement régime to support the new drug and then we waited.

So how are you feeling now?

After I started my new treatment, I decided to drop down to thirty hours a week at work. I was feeling so guilty for not putting in the full forty hours in the past few weeks due to tiredness, pain and overall stress. I couldn’t physically and mentally handle it, and the guilt added a weight I didn’t need. To be totally honest, life is too damn short to put work above your health. The cancer has been coming back every three months so until I can get my health to a consistent place, I will be staying at thirty hours.

As for the pesky intruder outstaying its welcome, my tumor markers double again after my first treatment and the pain got significantly worse. But, because this isn’t my first rodeo, I knew that the first dose of treatment doesn’t kick in for a few weeks. The intruder gets angry and starts to lash out because it is starting to get uncomfortable in there. After my second treatment and two and a half weeks in Portugal on vacation, my tumor markers had dropped slightly. By the third treatment, one of my markers was back down into normal range and the other one was getting close. My pain has subsided. I’m able get through a yoga class and even started back at the gym lifting weights to build back my strength I’ve lost over the last year. I still can’t do more than 10 (lazy) push ups because of my chest, but that is fine with me! I’ll get there. My problem is I don’t know how to go easy at the gym. I either go hard or don’t go at all. Working on the gradual re-entry part.

What is your current state health wise?

I just received my 3 month PET scan at the beginning of May and I’m happy to report that there is nothing new and the cancer flare in my bones has drastically decreased. The bones is one of the slowest places to remove cancer so i’m still waiting for the day where there is NED—No Evidence of Disease. This would mean my new treatment is continually keeping the cancer from generating new bad cells and is eating away at the current cancer in my body. Let’s hope it’s not eating away at anything else— am I right?! My bloodwork is back to being a perfect scorecard. Yes, I have a lot of pride in my bloodwork numbers. My Iron is at a whopping 27— it was 5 so just imagine the energy I have now! My red blood cell number is high which is a good thing. It means my body is growing new healthy red blood cells and they are large ones. A sign of my body recovering says my doc.

Now what?

I keep moving! Listen, my days aren’t always rainbows and sunshine like they may look on Instagram. The physical pain is one thing but it comes and goes. I have really been working on figuring out what is actually next for me.

My sense of belonging with my current life has faded. I again find myself in an unfamiliar place where no one directly around me seems to be. Think about it like this. We all go through phases in our lives. Some people are single and dating, others are married with kids and some are just finding love. You are never usually in these phases alone. People travel through them at different paces, but there is usually someone close to you that is in it with you, or has already visited. My phase is, well…not a place the majority of people around me have travelled through. I feel like I’m spinning a bit trying to figure out what direction to go in. I’m scared, but also am trying hard to embrace the unknown. What I have learned from having cancer is that even the most unexpected and worst thing you can imagine happening to you, can change your life in such a deep and meaningful way. I may be growing further away from the people and places in my life, but I think it is to make space for the new people I’m suppose to meet and the next challenge I’m suppose to experience. I cannot help but think that this is truly the lesson in this fucked up cancer mess. To find out what is next, you have to be grateful for your experiences, good or bad, and step forward with faith that your next journey with shape you in a way you won’t be able to imagine until you arrive.

Oh, and I got a new haircut! First time I am actually embracing and enjoying the short hair thing. Even trying out the bright lipsticks too! See, change is good, it just take time.

Kelly OstrowerchaMay 15, 2019Comment