A (scary) new development

I-am-not-a-statistic-mbc-2.jpg

The first time I walked (or should I say rolled since I was in a wheelchair due to the excruciating pain in my back) into my oncologist’s office on October 9, 2018 I looked as though my future was dim. I genuinely looked like a cancer patient.

At my worst I was taking 60mg of extended release morphine twice a day and two Percocet 10’s every four hours, often with little to no relief. I was bedridden, physically run down, and terrified about my future.

The initial treatment plan for me was palliative. The goal was simply to keep me as comfortable as possible.

I honestly felt like my life was over. If you would have told me where I am today I would have laughed at you. If you would have told me that I would be back at work full-time and almost completely off of any kind of pain medication (in the past three weeks I might have taken a Lortab maybe a total of three times) even though my job as a nurse is physically demanding I would have looked at you as though you had two heads.

In many ways I feel better today than I did one year ago, months before my diagnosis. I had been dealing with increasing back pain for longer than I can remember and had been living off of Naproxen and sleeping on a heating pad for relief. My oncologist told me at my last appointment that I need to remember that I didn’t just get cancer overnight and that there is a good chance my body had been fighting the early stages of it for a long time.

IMG_6936My treatment plan has taken a dramatic change. My oncologist has moved from a palliative course to a semi-aggressive one. He has moved from trying to keep me as comfortable as possible to doing everything he can to extend my life and quality of life. I’ve moved from a patient that wasn’t expected to recover to one that has the possibility of a more longer term chance of survival, even if the reality is that the cancer could always rear it’s ugly head whenever it feels like it.

This week is a very important week for me. Important yet exceptionally stressful. Part of my oncologist’s more aggressive approach is something that doesn’t often happen with a metastatic breast cancer diagnosis. It isn’t common to take a surgical approach unless the breast tumor is causing discomfort. The reasoning behind this is there is no definitive evidence as to whether surgery and radiation will extend overall life expectancy once the cancer has moved from local to metastatic.

Reviewing my oncologist’s notes from the beginning of my treatment to today is a complete 180º change.

  • Will treat with hormone based therapy since there is no evidence of visceral crisis. (October 12, 2018)
  • No local therapy for the breast (note: this means no surgery) without any skin ulceration, pain or other problems. (February 7, 2019).

2019-02-22 PET w CT Skull to Thigh-2

This all changed when I had my first PET scan on February 22, 2019. The findings surprised even my oncologist. No appreciable FDG uptake. Essentially the tumor in my breast had become dormant.

  • She returns with PET scan showing bone only disease…. Obviously improved with uptake on the PET scan actually less than expected. The other areas of previous potential adenopathy noted on her CT scan is resolved and she has very little uptake in the area of the breast. (March 7, 2019)

We briefly discussed surgery at my appointment on March 7th. The first mention since this journey began. It had always been ‘not a surgical candidate, not a surgical candidate.’ The PET scan changed all of that.

  • With good control systemically might consider treating the primary site. This would require a lumpectomy and followup radiation. (April 4, 2019 – ironically, the week I returned to work after six months off)

While my oncologist has been upfront that the evidence is inconclusive as to whether there is any survival benefit to local surgery, there has been some data to show the possibility of potential improvement and due to my age he felt it was an avenue that was worth exploring.

Cancer Word Map

Yesterday I met with the general surgeon to discuss my treatment plan. His report said that I am an ‘excellent candidate for a lumpectomy.’ Friday I meet with the radiation oncologist to discuss my radiation options. The goal is to do a type of internal radiation called brachytherapy. This type of radiation requires the placement of a catheter at the site of my lumpectomy a week after my surgery, then five days of radiation (twice each day). This is a huge difference from external radiation which would require a 4-6 week course of treatment.

Surgery is scheduled for July 1, 2019. My nerves are fraying but even though I realize this may or may not help me live longer, I feel as though I should do everything possible to be here as long as I can for my family.

So far I have been incredibly blessed with how my treatment has gone and I will have faith that this will continue. Cancer won’t beat me, I’ll beat it.


Jennifer – Extensive mets to bones. Diagnosed de novo at 43 of ‘unknown cancer’ on 9/25/2018, official diagnosis of metastatic breast cancer with bone metastasis on 10/9/2018. Cancer won’t win. I won’t let it. Life’s too short not to fight for every minute.
Dx 10/9/2018, invasive ductal carcinoma (IDC), left breast, 1.5cm, Nottingham Grade 6, hormone receptor positive, ER+ (estrogen receptor)/PR+ (progesterone receptor), HER2- (human epidermal growth factor), BRACA- (genetic mutation), Stage IV, metastasized to bones
First CA 27.29 10/9/2018 83 (goal <38)
Hormonal Therapy 10/12/2018 Tamoxifen (Nolvadex, Apo-Tamox, Tamofen, Tamone) pills
Targeted Therapy 10/12/2018 Xgeva (Denosumab) injection
Hormonal Therapy 10/19/2018 Lupron Depot (Leuprolide Acetate) injection
Surgery 11/29/2018 Vaginal hysterectomy with bilateral salpingo-oophorectomy
First CA 27.29 post hysterectomy 12/10/2018 73 (goal <38)
Hormonal Therapy 12/11/2018 Femara (letrozole) pills
Targeted Therapy 12/23/2018 Ibrance (palbociclib) capsules
First CA 27.29 post medication change 1/10/2019 60 (goal <38)
CA 27.29 5/2/2019 39 (goal <38)
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It’s a wonderful new day!

i am living with cancer

So it’s been a long time since I’ve updated the world about me. I guess I just wanted to live my life without thinking about cancer for awhile but so much has happened over the past two months. I feel bad for being so silent. I’ve had many of my prayer warriors reach out to me but I haven’t really answered much.

I had my first PET scan on February 22nd to help determine if my spine had healed enough to return to the strenuous job that I love so much. The problem was, I had it on a Friday. I now fully understand what ‘scanxiety’ really is. Luckily I was able to find my results on the Patient Portal and I have a friend that is an oncology nurse who could give me an idea as to what they said.

CONCLUSION:
1. Extensive bony metastatic disease.
2. Spiculated nodule in the lateral left breast, likely related to known primary malignancy. This shows no appreciable FDG uptake.
3. Otherwise no evidence of metastatic disease within the neck, chest, abdomen or pelvis.

Easy to forget how precious life isWhat does all this mumbo jumbo mean you might ask?

1. Lots of mets in my back. This came as no surprise. With mets to the bone there will always be evidence of it. Bones never completely heal, but thanks to what I still see as a miracle drug, Xgeva, I have bounced back more than I ever dreamed was possible. I live a (mostly) pain free life. I no longer am in constant pain. It is more an annoyance than something that keeps me flattened and unable to function.

2. A nodule is still in my left breast but…… What does no appreciable FDG uptake mean? Well I didn’t know and the internet was worthless to give me any insight. I tossed and turned Friday night because I was in the dark. No appreciable FDG uptake means ESSENTIALLY THE TUMOR IS INACTIVE!!!!!!!!

3. Otherwise no evidence of metastatic disease in other organs. My cancer is so far isolated to the (inactive) breast and (healing) bones!

I have an amazing lifeI’ve been so afraid to breathe a sign of relief for so long I didn’t quite know what to do when my friend gave me an idea of what it said Saturday night and then again when my oncologist’s partner did a read of it on Monday. I’ve been so scared for such a long time that I was unsure how to react.

March 7th was the day I had looked forward to for six long months and was afraid would never come. I had my monthly appointment with my oncologist and this was the first time I had the opportunity to discuss the results of my scan. He was very pleased and I honestly think he is somewhat surprised I have rebounded so well so quickly.

Something that surprised me is he was beginning to consider recommending me for a lumpectomy to remove the tumor. He had initially told me I wasn’t a surgical candidate so this hit me out of left field. Clearly something had changed his opinion. Is it because the tumor has basically died and he feels the time is right to remove it before it has a chance to rear its ugly head again?

After we discussed the scan and he did his assessment of how I was doing I dared to ask the question I was scared to ask. Could I go back to work? Did he feel my body was up to the challenge? With bated breath I waited for his answer. The answer was YES!!!!! After six months I was going to return to the job I loved so much, the patients I love, everything I have worked so hard for.

i will be fierceNext up was an appointment with our human resources on March 18th to discuss me returning. I cried as I found out my position as a women’s health nurse had been filled. I can’t blame them. It had been six months and the department could only hold my opening for so long. The unit has needs and unfortunately it was necessary to hire someone to fill those needs.

That being said I was going to have an opportunity to return in another department so on March 22nd I met with human resources and the floor director of the oncology/orthopedics unit. After some discussion to ensure I would be a good fit and I officially joined the team of 2 North/South. As sad as I was to say goodbye to my home for the past three years, I was excited for a new challenge. Also, as my white blood count runs a bit low, this unit was probably a better fit for me medically.

April 2nd began my new adventure. Since I had been gone for such a long time I had to go through hospital orientation again, the same as when I was hired. It was a LONG week after being off for six months but I learned some new things and brushed up on others I had forgotten.

On April 4th I had my next monthly followup appointment with my oncologist. The education coordinator was great and accommodated me to take time off so I didn’t have to worry about missing some of the day. All of the staff seemed surprised and excited to see me walk in wearing the navy blue scrubs I had missed so much. They all told me that if you told them one day I would be back at work after the way I came in for my first appointment needing to sit in a wheelchair because I could barely walk, they would have never believed it.

the best is yet to come

My oncologist was very pleased as well. He told me that after such a great response to my Xgeva injections we are moving from monthly to every three months. We also discussed the possibility of travel nursing and he said he fully supported my decision to do what I love while seeing more of the country. He surprised me again by mentioning a lumpectomy and this time he also suggested radiation therapy. While he said that the studies were inconclusive as to whether it extends the life of women with metastatic breast cancer, he believes it may be beneficial in my case. He said because my tumor is so small he doesn’t feel a mastectomy is indicated which was very reassuring. While it may or may not help, it won’t hurt and if this is what I need to do I’m on board 100%. I’m very nervous because this is a big deal, but I will do whatever it takes to live as long as I possibly can.

The day I had waited to come for so long came on April 9th as I returned to what I loved for two weeks of orientation on day shift. My new manager was terrific and let me do only two days each week to slowly get back into the swing of things. I’m not really a day shift gal but I had some terrific ladies show me the ropes in my new home and I had some wonderful (and one really interesting) patients to care for. I couldn’t have asked for a better orientation and I really feel like I learned a lot in a short amount of time.

Expressing-gratitude-in-leadership

It’s so funny. How many of us complain about our jobs and say we can’t wait until we can retire? I actually was approved for disability starting this month but I couldn’t do it. I love what I do. I want to make a difference in people’s lives. Some days might be harder than others but I love each and every day in it’s own little way.

I have been so incredibly blessed during this crazy and terrifying journey. My family has been very supportive and I appreciate them everyday. The ladies from the church brought us some meals to make things easier for us during those early days.

I had some kind people who donated money to help us get through the rough months without my income and it was a lifesaver since my husband works a lower paying job so that my son can go to college for free. My checks are the primary income for our household.

My high school graduating class amazed me by paying a few months of our electric and gas bills in addition to giving us a gift card to Walmart and gas cards to help pay for trips to my oncologist. We also received so many warm wishes and words of encouragement from many people through letters, texts or simply asking how I was doing around town. I’ve never felt so loved by so many people.

courage

I have wonderful co-workers at Olathe Medical Center (I am not sure who they are but I think it was some I know and others I don’t) that donated some of their paid time off to me during the past seven months. Because of their generosity I was able to maintain my health insurance through my entire medical leave and only had to pay out of pocket a handful of times. I couldn’t have done it without them.  I easily could have looked for another place to work when I was medically cleared, but how could I? OMC is my family and I have missed them terribly.

I am lucky enough to have an incredibly kind oncologist and an amazing cancer facility. I can’t say enough about Dr. Lee and the Olathe Cancer Center. He helped facilitate my recovery from the medical side with his knowledge of the disease and a hug initially to comfort me and later because he was so pleased with how I was doing. When he saw me on the hospital floor Thursday he gave me a big smile and said ‘It’s good to see you lady.’ It felt good to be seen!

Me, Sept 23, 2018I also had the encouragement of a wonderful friend that was there for me. When I was scared they told me to stop reading negative studies and articles. When I told them that everything said I wouldn’t make it five years they told me that I was strong and not just another statistic. I was me. They encouraged me to move forward, stay strong, keep positive and not let anything or anyone hold me back. While we have drifted apart lately I will always feel lucky that they were there during the time I needed them most. Medicine can only do so much to heal you. Positive thoughts are what can heal you the most and I was lucky to have someone to help push the negative ones out of my mind. When you are scared sometimes all you need is a friend to be a (virtual) shoulder to cry on and some positivity to offset the negative thoughts that race through your mind.

To all of you I’ve mentioned and the many others I haven’t, I can’t begin to thank you enough. I’ve never felt so loved and cared for as I have during this scary time and because of all of you I’ve been given a second chance at life. No matter how long or short it is I am going to live each day as if it were my last. Life isn’t guaranteed for anyone and I refuse to waste any more time worrying about the could be’s or what if’s.

My return to my regularly scheduled night shift, April 22, 2019

Tomorrow I make my gallant return as a night shift nurse on the seven month anniversary of my last shift on the women’s unit. I haven’t been more excited and nervous in my life. It’s like starting over even though this hospital has been home for the past three years. I have a new staff to get aquatinted with and a new patient population. I mean men? It’s been so long had forgotten they exist!

I may have cancer and will for the rest of my life. That is what metastatic breast cancer is. I will be fighting this fight until the end of my days but I refuse to let cancer win. I will not be defined by my diagnosis and I choose to fight this with as much grace and dignity as I can.

The sun will rise in the morning, the birds will sing and it’s a new day. I choose life. I will make cancer my b**** and live the best life I can!

Note: The top photo is from the last shift I worked as a women’s health nurse (September 23, 2018) prior to discovering that I had an ‘unknown’ cancer on September 25, 2018. What a difference 48 hours makes. The bottom photo is from my first scheduled night shift as an oncology/orthopedics nurse taken on April 22, 2019. In an interesting twist of fate my nurse manager asked me to trade tonight for Friday night so I will return to night shift EXACTLY seven months from that last shift.

Jennifer – Extensive mets to bones. Diagnosed de novo at 43 of ‘unknown cancer’ on 9/25/2018, official diagnosis of metastatic breast cancer with bone metastasis on 10/9/2018. Cancer won’t win. I won’t let it. Life’s too short not to fight for every minute.
Dx 10/9/2018, invasive ductal carcinoma (IDC), left breast, 1.5cm, Nottingham Grade 6, hormone receptor positive, ER+ (estrogen receptor)/PR+ (progesterone receptor), HER2- (human epidermal growth factor), BRACA- (genetic mutation), Stage IV, metastasized to bones
First CA 27.29 10/9/2018 83 (goal <38)
Hormonal Therapy 10/12/2018 Tamoxifen (Nolvadex, Apo-Tamox, Tamofen, Tamone) pills
Targeted Therapy 10/12/2018 Xgeva (Denosumab) injection
Hormonal Therapy 10/19/2018 Lupron Depot (Leuprolide Acetate) injection
Surgery 11/29/2018 Vaginal hysterectomy with bilateral salpingo-oophorectomy
First CA 27.29 post hysterectomy 12/10/2018 73 (goal <38)
Hormonal Therapy 12/11/2018 Femara (letrozole) pills
Targeted Therapy 12/23/2018 Ibrance (palbociclib) capsules
First CA 27.29 post medication change 1/10/2019 60 (goal <38)
CA 27.29 3/7/2019 53 (goal <38)

 

Queen of the obscure?

Ribbon

One year ago I would have never imagined this would be my life. I was always healthy. Even as I watched my mother and father deal with medical issues, diabetes, high blood pressure, high cholesterol, and thyroid problems.

But that was never me. While I always battled weight issues, my health was always pretty good. I was never sick often and when I was, it was only minor things like a brief cold or fever or stomach bug. My health was always something I could count on.

Until September 25th.

That’s the day things changed. I went from healthy to feeling like my body is betraying me. First the tumor. Then the mets slowly eating my bones. It’s taken time, but slowly I was learning to live with that. I felt as though day by day I was reclaiming my life.

Then early Saturday happened. I chatted with a friend on the phone and the whole time I felt as though my stomach was jumping out of my body. I got off the phone and crawled up the stairs to bed. I took some pain and nausea medication then tried to sleep. Instead of improving, the pain became worse so I got into the shower and ran the hottest water over my stomach. It had helped in the past when I had gallbladder issues which was what I began to think was wrong with me.

When that didn’t work I climbed back into bed and cuddled up with my heating pad. After only a few more minutes the nausea hit and I couldn’t stop throwing up. I had to face the reality that whatever was going on wasn’t going to get better and I needed to go to the hospital.

I was in tears by the time I made it to the emergency room, barely able to speak enough to tell them my name or birthdate. Thank god for IV Morphine. At least I was able to find enough relief that I could tolerate tests. The verdict after labs and a CT scan of my abdomen?

Acute Pancreatitis. Where the hell did that even come from?

A two day hospital stay later and they couldn’t tell me why. I had none of the risk factors and my medications do not list acute pancreatitis as a side effect. My final diagnosis? Acute idiopathic pancreatitis. This only occurs in only 10-40% of patients. I am one of them.

Apparently I am becoming the queen of idiopathic. The obscure. The rare.

About 2–10% of normal healthy individuals do not develop an immunity from routine vaccines. I am considered a non-converter to not one, but two immunizations, both the MMR and HepB vaccines after having been given both series multiple times with no success. Only 2-10%. I am one of them.

Only about 1-2% of people who get immunized for the flu shot will develop a fever as a side effect. I develop full on flu symptoms and have been recommended to use an alternative formulation. Only 1-2%. I am one of them.

And only 6-10% of new breast cancer diagnoses are initially found once they have become stage IV, sometimes called ‘de novo’ metastatic breast cancer (from the beginning). Only 6-10%. And I am one of them.

Forty eight hours later I am out of the hospital, but I still don’t know what caused my pancreas to play tricks on me. This leads to another fear. If I don’t know what caused it, how can I keep it from happening again? Research shows that it is important to find the cause because if it’s not found there is a high chance of recurrence.

First the ticking bomb of metastatic breast cancer. Now pancreatitis. It’s almost more than I can handle. I’m beyond over the ‘new normal’ my life has become. I would give up everything I own just to go back to the ‘old normal.’ To have just a little more time with the me I used to be.

Is that asking too much? Probably so.


Jennifer – Extensive mets to bones. Diagnosed de novo at 43 of ‘unknown cancer’ on 9/25/2018, official diagnosis of metastatic breast cancer with bone metastasis on 10/9/2018. Cancer won’t win. I won’t let it. Life’s too short not to fight for every minute.
Dx 10/9/2018, invasive ductal carcinoma (IDC), left breast, 1.5cm, Nottingham Grade 6, hormone receptor positive, ER+ (estrogen receptor)/PR+ (progesterone receptor), HER2- (human epidermal growth factor), BRACA- (genetic mutation), Stage IV, metastasized to bones
First CA 27.29 10/9/2018 83 (goal <38)
Hormonal Therapy 10/12/2018 Tamoxifen (Nolvadex, Apo-Tamox, Tamofen, Tamone) pills
Targeted Therapy 10/12/2018 Xgeva (Denosumab) injection
Hormonal Therapy 10/19/2018 Lupron Depot (Leuprolide Acetate) injection
Surgery 11/29/2018 Vaginal hysterectomy with bilateral salpingo-oophorectomy
First CA 27.29 post hysterectomy 12/10/2018 73 (goal <38)
Hormonal Therapy 12/11/2018 Femara (letrozole) pills
Targeted Therapy 12/23/2018 Ibrance (palbociclib) capsules
First CA 27.29 post medication change 1/10/2019 60 (goal <38)
CA 27.29 2/7/2019 55 (goal <38)