Pamela’s Story

Site created on July 28, 2013

I had my initial consultation with the oncologist, and want to let you know what he said...

It wasn't the best news, but we do have a plan, and I have an excellent chance of beating this stupid cancer. The tumor is A LOT bigger than everyone thought. 6cm as opposed to 1.4, or 2.8, which was what the first couple of reports told us. The oncologist (Dr. Mulvey) thinks that probably a lymph gland is affected, and that if the tumor was taken out right now, it would have to be a mastectomy, instead of a lumpectomy (because of its size). Then chemotherapy and hormone blockers.

He gave me another option...chemo immediately (6 sessions - 18 weeks to complete) to shrink the tumor so a lumpectomy could be done after (far less invasive than mastectomy) PLUS they could track how effective the chemo is on this cancer before surgery. Following chemo and surgery, radiation and the hormone blockers. After listening to this very knowledgable and kind doctor, I have decided to have the chemo first to shrink it, then the surgery, radiation and hormone blocker. I will start next week.

I will lose my hair. ( I was pretty teary as I left the cancer center, and another patient who'd overheard my conversation with the nurses came up to our car and said, "Honey, when your hair falls out that just means you are getting better!" I will choose that very same attitude) I will not have to get nauseous because they will give me relief. I will go in once every 3 weeks for a 3 hour session. I will be done with chemo and surgery by the beginning of December! I went for a tour of the infusion room, which looked to me like a beauty shop with big picture windows that look out onto a pretty waterfall.

This is all so overwhelming and is happening so fast. I'm not going to lie - we shed some tears in Dr. Mulvey's office. But I have a good percentage rate of being cured if I do everything they want me to do on their timetable. I will continue to work as much as possible through this - there may be a day here and there that I am too exhausted to work - or maybe a few shortened days, but I intend to work and to keep as normal a life as possible going. I also still plan on walking that half-marathon Oct. 20 in San Francisco, as long as the date doesn't interfere with one of my treatments. We were told that exercise is a key factor to fighting the effects of chemo so I will try and walk every day. I have a few more tests this week, then a port will be put in Thursday morning for the chemo treatments (to aid in distributing the meds accurately and safely) and off we go...

Dennis has been in every conversation and every appointment and has been such a source of strength. This is not easy for him either, but he is a rock and is ready to fight with me! And I've got my God to lean on - I fully trust He will get us through this. Jesus loves me, THIS I know.

So that's it in a nutshell. I am asking for one specific prayer: that this cancer responds to the chemotherapy! I have felt God's peace throughout the past couple of weeks, and I know for a fact that it is because of your prayers, my dear friends and family.

Again, Isaiah 41:10: "Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand."

Blessed and so thankful,
Pam

Newest Update

Journal entry by Pamela Johnson

When I set up this Caring Bridge journal 3+ years ago, my purpose was to journal and track how I was feeling, both physically and emotionally, during my treatment for Stage IIIA Breast Cancer. My hope was that it might help someone else in their own cancer journey. I have not written in this journal for almost 2 years, which is a good thing! It means I am still cancer free and chugging along...

Since the purpose of this Caring Bridge journal was to help others navigate their own Breast Cancer journey, (and October is Breast Cancer Awareness Month, after all...!) I felt it was important to share what I have learned in the time since my last post. 

Last May I retired from my job at the church. I had turned 62 and was hoping to take my Social Security benefits early as long as they covered my healthcare costs (I had received health insurance through my job). Turns out my Social Security benefits were just enough to cover my new health insurance so I decided to take early retirement.. (FYI: apparently a retired married couple on a fixed income make too much to qualify for the "Affordable" Care Act...but don't get me started on THAT mess...) Long story short: when my benefits changed, so did my drug coverage. I soon found out that the exemastane I have to take (to keep that naughty estrogen at bay) is a relatively new and very, very expensive drug. When I went to the pharmacy to pick up my 30 day supply for the first time since my insurance changed I almost had a heart attack right there. I was told that this 30 day supply had a $550 price tag and that my co-pay was $100. I went home and immediately called my oncologist to find out if there was a cheaper alternative to exemastane I could take, but he said this was the best drug for my particular situation and he did not want to risk switching me to something else, since I was doing so well. BUT...he handed me over to the cancer center advocate to see if she could help me. This advocate, Cindy, was my knight in shining armor. She told me about a non-profit called Co Pay Relief ( https://www.copays.org/ )  that grants financial assistance in the form of co-pay relief for only a handful of diseases, and Breast Cancer is one of those they cover. She helped me connect with them and apply, and lo and behold I qualified! I now pay $0 out of pocket for any drug related to Breast Cancer, up to $5000/year. I have to reapply each year, but that is a small price to pay for this kind of help. I learned that Cindy, and many others like her at cancer centers all over the country, know of resources and are there to help. 

I am happy to say I have graduated to twice yearly visits to my oncologist! Most people don't realize the emotional roller coaster a cancer survivor goes on before a checkup, so reducing that stress to twice a year is huge. I have had a couple of minor scares...all related to my compromised lymphatic system, but all in all I am cancer free and feeling pretty good. However, this exemastane that is keeping me cancer free is also my biggest obstacle. It makes me feel very old most days. (that's the only way I can describe how I feel) I have gained a lot of weight, my joints are stiff and painful, my brain is pretty foggy, I am abnormally moody, and I sleep poorly. I recently read several reviews on this drug, all from people with similar struggles, and there were many who stopped taking exemastane against their doctors orders because the side effects were too much for them to handle. But I will continue to take this drug and do whatever it takes to stay healthy. It has not kept me from following my dream of teaching workshops in my studio, nor from traveling. We leave soon for England to visit family and I will be bound up tight in all matters of compression gear on the plane, because I am determined to not allow cancer or anything else keep me from living a full life. 

I am an aging, stiff and achey, sleep deprived, overly emotional breast cancer survivor who is grateful. So very, very grateful. 

“I keep my eyes always on the Lord. With him at my right hand, I will not be shaken.”
‭‭Psalm‬ ‭16:8‬ ‭NIV‬‬

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