Humerus Bone

Such an amazing sunny day!!! I cannot get enough of the warm brightness of spring. Birds, bugs, flowers, green trees……….I love it all!!

You may recall back in November/December I shared that my humerus bone in my left arm was at high risk for fracture. The debate at the time was surgery to reinforce the bone, or to try radiation to kill the cancer cells. We went with radiation and I had 10 total treatments. At that time I didn’t have any pain or discomfort in the arm at all. About two months ago I noticed some swelling in my bicep, decreased range of motion and pain. The pain starts at the top of the bone and goes down to a little above the elbow with the worst on the high side of the bone where the humerus and the shoulder connect. The scans and x-rays began, which showed fluid build-up and a cancerous lesion that is growing out of the bone. The tumor that is growing outside the bone is what’s causing all the pain right now. I call it the “snuggle zone” for Charlotte. Her head is right at that level when we are snuggling on the couch and she bumps it on a daily basis. Ouch!!!! She has started to ask about my “bad arm” before she sits down with me which helps negate some of the bumps. It’s also the same arm that is typically use to carry things since my mastectomy back I 2012. The right side had the original surgery for lymph nodes dissection (preventing lymphedema has always been a focus for me). I also use it to push myself out of the car when I am parked and the same side I get blood pressure taken on. It’s hard to tell what the true pain level is at this point. I am still on a pain patch and we recently went from 75mg down to 62mg so it’s probably causing more pain then I recognize at this point. The pain patch is for the cancer in the lower lumbar spine that was causing so much pain this time last year. We are slowly weaning down the patch but I may never be total free of constant long term pain management at this point. I have been doing some lymphatic massaging which has helped some of the swelling go down in the arm.

I consulted with radiation oncology and she referred me over to orthopedic surgery for further evaluation. Unfortunately more radiation isn’t an option and it’s possible this treatment could have caused this to happen. Radiation can cause cancer (one of the risks you take) and with no symptoms or pain prior to the treatments it could have contributed to or not been effective in this current situation. With that being said, radiation has been very effective for me in other areas along the spine and brain and has really helped with pain mgmt.

Last week Steve and I met with the ortho surgeon who was very nice and patient with us. Yet another doctor who has been added to my team. I have lost count of how many doctors I have seen and consulted with at this point. The surgery itself isn’t super invasive which is good. They would go in and scrape out all the cancer, fill in the hole from the tumor removal and fortify the entire bone with a rod from shoulder to elbow. Recovery didn’t sound bad either and basically I should be able to apply weight pretty much right away. I have wanted to start yoga or some light weight training which is delayed by the fracture risk. I can’t put my full body weight on that arm. The surgery would be the same if I do end up fracturing or breaking this bone prior to surgery, there would just be more clean up needed on the bone or muscles depending on how it breaks.

Basically we need to weight the pros and cons of the timing. This surgery is needed but with chemo working is now the time to take a break necessary to allow for surgery? That is the question! It will come down to how long and how much pain can I tolerate until I can have a chemo vacation. Ideally it would be nice to get through summer and fall before surgery. https://www.knowyourbody.net/humerus-bone.html

Never a dull moment in the life of stage 4 cancer that’s for sure. Even when things are going well on one hand there are most likely other things that are not be going so well on the other. We are happy with the results of chemo and it’s unfortunate we have to deal with another surgery and another issue. Thank goodness for amazing physicians and surgeons we have so close at Johns Hopkins. The collaboration and consulting between all those on my team happens behind the scenes and is quickly and effectively done.

One other topic I just want to clarify for my readers. Although the pet scan from my last post did show less lesions in the spine there were still too many to quantify. The bones don’t show up great on a PET scan so it’s hard to tell how they are responding if at all to the chemo. Radiation and vertebroplasty has been done to various parts of the spine which is what we attribute the reduction of lesions and pain to. “Too many to quantify” is still pretty extreme in terms of how advanced this cancer is throughout the bones.

I hope everyone has an amazing weekend, love to you all!

PET Scan Results

I wanted to share a quick update on my most recent PET scan. It was hard for us to believe, we have had such bad news from previous scans that seemed to consistently show progression over the past year.

Friday evening the PET scan was released for me to view with a message that said “Good News!” We have finally gotten the news we have been wanting to hear........shrinking lymph nodes, less lesions along the spine (thank you radiation), and all organs remain cancer free!! Great news for this mamma and an amazing mothers day gift!! However, Steve and I both felt unsettled at first. We felt like we should be shouting and celebrating this amazing news but for some reason we didn't do that. We just sat there letting it sink in, quietly pondering the results. Our faith in the results were clearly glass half empty (which is not my normal view) and when we actually received positive good news we didn’t know how to react. This is a reminder to always have faith and hope in the healing that can take place. Our hope and prayers were for “no growth” and to have a report of reduction is really amazing!

Now, we have no idea how long this will last or how long this particular chemo regiment will be effective for my cancer. But for now, this is really good news as we go into the summer months.

Thanks for all your prayers (they are working), love and support! Continue to pray for stability of my cancer and strength as I continue through treatments and side-effects.

Love

PS: check out my 1 second claim to fame from the Orioles game on Sunday as they recognize Dr. John Fetting of Johns Hopkins University for advocating and fundraising for breast cancer prevention. 

https://www.mlb.com/video/birdland-hero-dr-john-fetting/c-2040325583

Mothers Day

Mothers Day Morning Love

One Year Later - Where I am Now

Hi ya’ll. It’s been some time since I last posted an update here. What is so hard to believe is that 4/28 marked my one-year mark of fighting and facing stage 4 cancer. This past year has been filled with so much physical and emotional pain that I am not going to write a recap post. I am going to write a “Where I Am Now” and not focus too much on the past year.

I am stronger and feeling so much better since the brain radiation finished in December. With the current chemo plan, which hasn’t changed since my last post (Lynparza along with the IV Carboplatin), I have really bad and debilitating headaches. Nausea is also a big issue. The current cycle is 2 weeks (1st week I do the Lynparza pills and one day of IV Carboplatin. The second week it’s just the IV treatment followed by a 2 week break). As of this current cycle headaches and nausea is much improved!

I had a period of really bad anxiety and depression but that has passed and I rarely have super down days (at least recently). Since I had a relatively non-emotional personality in the past, emotions can be hard for me to deal with. Hard for me and Steve, plus friends and family who try their darnedest to keep in touch and provide emotional support. Happy, carefree days are most certainly in the past, but I am hopeful that the more years I gain the more freedom we feel. When you are diagnosed with early stage cancer, there is an end in sight and you are able to count down the days of treatment, surgery, etc. With stage 4, it’s treatment for the rest of my life and the effectiveness of the current treatment plans that never ends. The three of us went to breakfast on Sunday and the waitress said, “Can I ask you a question?” “Sure,” I said. “Did you beat it?” At first, I didn’t fully hear her question and she repeated “Did you beat it?” I think both Steve and I took deep breaths at the same time and I said, “I’m actually not going to beat it, I am going to live with it.” She didn’t know how to respond and started sharing a family history on her step side of the family. She wished me luck as we were leaving. It didn’t damper the day, it is what it is!! I am having scans soon to see where we are. I am really hoping and praying for a sign of decrease in cancer especially in the lymph nodes but even a stable status quo would be ok at this point - NO Growth!

The past few months have definitely been the best since last April. In fact, we attended an annual event for a great non-profit (Believe Big) that we attend for Pushing Pink Elephants Inc. each year. I remember last April being in so much pain at this event. Pain that was coming from the cancer in my spine that we didn’t know was there yet. This year at the event I was almost pain free thanks to pain management, surgeries, and radiation. I even wore heals for the 1st time in a year. I paid for it later that night and the next day. My lower back wasn’t super happy with my decision, but it was a fun night to be dressed up and fancy and I had a fun time.

I still do not feel like I have adjusted to being home full time. Work was so much a part of my every day that a year later I still feel like a fish out of water. I so appreciate the time I have to rest when I need to and the extra time I get with family and friends that I didn’t have before. But I miss the routine, co-workers, projects, and the daily interaction with others. I miss the old “normal” day to day. The stay-at-home mom bit wasn’t in my plans and it’s a blessing, but when you don’t feel good and have to pick up your energetic 6-year old from school it can be hard. Mornings can be a struggle sometimes as well. It kind of feels like morning sickness or all-day sickness like I experienced with pregnancy. It’s just hard to know how the day will progress when I open my eyes in the morning. We have our bad, good, great, and amazing days, it’s just hard to know how the day will unfold. Steve’s morning questions are “How did you sleep?” and “Do you feel ok?”

I got to celebrate the big 37 on April 14th. It was a truly beautiful Saturday and we took a short trip to the beach to celebrate. It was nice to get away with Steve and Char and enjoy a good weekend of sun and fun. I always said that if I hit 40 and stayed cancer free I was going to have a huge party. That ship has sailed, but you better believe 40 will still be a big celebration with friends and family in a few years. I have the hope of stability and “stable” cancer!!

So things are going ok! Better than they have been in the last six months. I am not gaining weight, so I am pretty thin, but not losing anymore so that’s definitely a positive. I am getting stronger and able to do most of the things I was unable to do back in December and January after brain radiation. The biggest issue right now is getting through chemo without the side effects. I also have some pain and swelling in my left arm (humerus bone that was a fracture risk and was treated with radiation as the 1st option to rid the bone of cancer). So far, we are not sure the cause or how we will treat it going forward, but it is quite painful. Char bumps it on a daily basis. My hair is coming back from brain radiation. So far chemo’s are not causing hair loss so hopefully in a few months I have some hair growth.

Sometimes posting a Facebook post is easier for me to quickly share updates with friends and family. Here are two posts since I last updated this blog! Thanks for reading, keeping in touch, praying, and thinking about us! We love all of you and ask for continued prayers as we get ready for summer!




14th:

I found this blog today which pretty much sums up almost the last year of my life. Each day is different in terms of if it’s a good feeling day or a bad one. Every morning we assess and there are many days (like this week and last) where I stay in bed and Steve drops Char off at school or days when the mornings are good, but the afternoons are bad and someone has to pick Char up. Chemo is so hard on your body and with no end in sight for treatments you don't see the ending (I so took for granted that chemo countdown I did back in 2012). Scans put the fear of God in you and each symptom has you thinking of progression. Even good scans give you pause when you feel something isn't right because you are having symptoms or feel something is just not right in your gut (that was my day yesterday). It’s a hard road to go down for the rest or your life. Thanks for everyone's continued prayers, texts and love!!!

Shine brightly, live happily and smile!!! Xoxo



February 27th:

Chemo day! Two types of chemo for some double hitting cancer kicking power. So far it seems to be working at reducing lymph node involvement so we may have finally found the chemo that will work for me.

Pictures from the last couple of months:

Believe Big Fundraiser (Brother Darin, his wife Amy & Steve)

Believe Big Fundraiser - Hair & Heals

Birthday celebrations with my girls in NC

Birthday at the beach, turning 37- 4/14

Charlotte took this picture of her mamma

St Patty's Day with this stud