No News is Good News.....Not Necessarily

Hi everyone,

Sorry I have not posted an update in a while. Things have been a little crazy since my last post back in September. Rather then break it all up into separate posts, I am doing one big update. To sum it up, here are a “few” topics that sum up the last month or so:

·         Hospitalized twice, 1 for a port infection and the other for pain mgmt

·         Thoracenteses (#1 & 2)

·         Sarcoplasty

·         Pathology on Fluid from Thoracenteses

·         New Chemo (plan B)

·         Blood Transfusion (#2)

·         Fractured Ribs

·         Pet Scan Post-Colorado

·         Radiation

·         IV Mistletoe in DC

Both ER hospital visits resulted in 2-4 day stays. The port infection was treated with antibiotics. I was so worried they were going to remove the port, which they talked about doing. However, that was not necessary and the port stayed in, YAY! The second stay was for pain that we were unable to control at home with the oral meds. The pain continues to be rather unpredictable and comes on fast and with a vengeance. I am happy to say that since then, pain has been really well managed following the sarcoplasty. I still have a pain patch on 24/7, but I am off all other oral pain meds for the most part (pain is hard to predict day to day). The sarcolasty procedure went really well. It was done to provide some stability within my sacrum where the fracture occurred back in September. The port infection delayed the procedure by a couple weeks, but I was finally able to get in for the procedure. Up until the sarcolasty, I had a feeling/sensation in my back whenever I moved. I walked a little with a limp, favoring the left side, and just didn’t feel steady in the lower spine. It’s so hard to explain what it felt like in hindsight. Once the sarcolasty was done and I recovered I realized that this feeling was no longer there. I felt the stability and no longer felt the fracture rubbing and moving around. I am so thankful for this procedure. The doctors initially were not sure what they were going to do about the fracture. We could let it heal on its own (might not even be a possibility given the cancer detioration), re-radiate the spot (past radiation treatment had already targeted this area and been treated), or look for surgical options. My specific case was presented at a tumor board meeting and sarcolasty was an unanimous vote on how to treat the fracture. The procedure was out-patient and done under anesthesia. Recovery was pretty quick. I was up and about the next day with some pain and soreness at the surgical site.    

During my second stay in the hospital I had the 1^st thoracenteses done. There was fluid building up around my right lung that appeared for the 1^st time on a scan back in July. It was a wait and watch game to see if it increased or cased shortness of breath or pain. By mid-September the fluid had increased significantly and a thoracenteses (procedure to drain the fluid) was needed. I was experiencing shortness of breath and pain in my chest. It took a couple weeks before the pathology came back and confirmed what we feared but expected. There are cancer cells around the outside of my lungs. This is not considered lung cancer and so far the lung itself continues to be free of cancer. The cancer around the lungs is causing fluid to accumulate and they drained off about a liter of fluid. Today I had my second thoracenteses procedure. In just over three weeks the fluid had built back up and was compressing my lung. This time they removed about a liter and ¼ of fluid. With the new chemo regiment we are hopeful the fluid will stop accumulating. If future thoracenteses are needed, they are recommending a catheter be placed so that draining can be done at home and eliminate the need to go into the hospital for a procedure.  The procedure itself isn’t too bad. The worst part is the needle numbing the area and the pressure. I will be sore on that side where they went in for a few days.  The news about this new area of cancer, although expected, was still really hard to hear and digest. We were holding on to a glimmer of hope that the fluid was being caused by something else.   

When the fluid around the lung confirmed cancer cells, it was decided our current chemo plan (Ibrance chemo pill and Letrozole) may not be the most effective for my cancer. The new recommendation is a chemo pill called Xeloda (Capecitabine). The current plan is 1,500mg twice a day for 14 days followed by 7 days off. I am 10 days into my 1^st cycle and so far side effects are manageable. Sunday I did start experiencing some symptoms of hand and foot syndrome which is where the soles of your feet and hands become red, swollen, painful, dry or start cracking. Right now it feels like I am walking on a sun burn, OUCH. I have been researching ways to help with these symptoms and am hopeful we can get to day 14 without adjusting the chemo. There are tweaks we can make like reducing the dose to better manage side effects if that is needed.  Appetite is so –so, not the best but could be worse. We are managing nausea with medicine.

My last post talked about my 1^st blood transfusion and I ended up needing a second one. Right now my blood counts are holding up well being off of the 1^st chemo Ibrance. Ibrance really did a number on my blood counts and bone marrow. It is nice to see some stability in my recent blood work. The shortness of breath we originally attributed to the blood issues was most likely more associated with the fluid around the lung.

During the scans done to monitor the fluid building up, I had several ribs that were either fractured or healing from a fracture at various times over the last few months.  I don’t really know when these have happened and I often experience tender ribs.  They typically cause some pain and discomfort. With cancer being within the ribs, fractures are to be expected due to how weak these bones have become.

The latest pet scan from a couple weeks ago was compared to the one I had done back in July. It showed the fluid around the lung but other than that no additional cancer was identified. It is great news that no new cancer was identified (aside from the recent cancer around the lungs identified prior to the pet). We are hopeful that this new chemo (Xeloda) will do two things: reduce the cancer tumors already identified and stop any continued growth or spread of the cancer. If we can keep side effects to a manageable level and the dose stays at its max, I am hoping we can accomplish some improvement by the next scan, which will be in Jan/Feb 2018. 

We wrapped up radiation on the humerus bone in my left arm in early October. The goal was to kill the cancer and prevent a fracture. No lifting over 10lbs for three months. Scans will be done to help determine the health of the bone and muscles. If things seem stable and a fracture does not occur between now and then, we can avoid a surgery to pin together the bones between the shoulder and humerus.

I started IV mistletoe treatments in DC the last week of September. Under the guidance of my doctor in Colorado, GW Center for Integrative Medicine in DC will be administering IV mistletoe once a week. We started out at 400mg since it had been a while since my last treatment in Colorado and we are working our way back up. The days in DC are long and we are still exploring the best and most efficient way to get to and from DC.  I am learning the metro, which I hate, but it is much better then driving straight into DC and dealing with parking and traffic. I do feel so much better when I am getting mistletoe and noticed a vast difference after just the 1^st treatment here. Depending on how things look on the next scans, we will decide if this treatment is still worth the expense and travel costs once a week. In addition to the IV once a month, I will continue to do the subcutaneous (under the skin) injections. We are trying to find the right does for these injections done twice a week. I continue to work with Dr. Stacy at Namaste in Colorado and we have monthly calls to go over any changes/issues, blood work, meds and how I am feeling.  She tweaks supplements as needed based on blood work and side effects from chemo. I always leave these calls feeling hopeful and empowered to stay the course. It’s great to hear how my blood work is changing in a positive and supportive way. Using her recommendations on how we support my body and immune system while on the conventional chemo has been so great.  I get a little overwhelmed by the number of supplements that I am taking. Between the # of pills and the frequency/timing, it’s a lot to keep track of. Sometimes I feel like my tummy is just full of pills. But we are starting to see the benefits in my blood work, which is motivation to keep on pushing through.    

A lot has happened, that’s for sure. All this on top of all the normal life events, issues, routines and commitments that go with being an adult, parent, wife, etc. Not to mention the homework, memorizations, and school projects with Charlotte. Having cancer is a full time job in and of itself! There is never a dull moment. I am hanging in there and am keeping the faith that things will improve and get better. During and after my most recent trip to the ER for pain, I hit my lowest point in this journey so far. We are almost six months into this diagnosis and are still not seeing an improvement in the cancer. We are managing the side effects but a little glimmer of improvement is really what I want to see. I was withdrawn for a week or so dealing with all the negative feelings (disappointment, fear, anger, resentment, etc.) that had been building up over the past few months. Fortunately it passed and I came out feeling more determined and hopeful. At the end of the day, I have to get better and reach a “stable” prognosis. The alternative is just not an option. Mindset is so important and I have to work at it every day. Most days I can see the positive to override the negative, while looking towards the light. I celebrated Charlotte’s 6^th birthday a couple weeks ago, and it reminded me of how special getting older really is. This age is so fun, but she is so aware of what is going on around her. Her questions about cancer and why I am sick are at times hard to answer in a way that makes sense to a 6 year old.

Each day is a new day! I am exploring meditation and trying to be more mindful and present in the day to day. I am learning to breathe through the pain and anxiety that most days bring. We are pushing forward towards a healing path of love, light, and laughter!!