2020 March Update

As I sit here typing my update on my health I feel it wouldn’t be right to leave out the pandemic we are experiencing with the coronavirus. People are dying all over the world from this horrible virus, doubling confirmed cases by the day, and businesses are shutting their doors. Social distancing of 6 ft away is recommended yet medical staff are still at the bedside and sometimes without appropriate personal protective equipment like the N95 masks. I’m fortunate for many reasons as a nurse in the field I am in, the hospital I work for, and as a patient. My hospital first is not a hub to hold the confirmed patients. My unit is a clean unit due to the immunocompromised newborns. So we likely will not deal directly with a confirmed case. We have restricted visitors to only the banded support person. That’s it. Everyone is screened at the front doors and in other areas of the hospital there are no visitors allowed. All elective surgeries are cancelled. Doctor offices are closing their doors or if they are open are not allowing anyone other than the patient inside. Everyone goes through a screening before allowed in. Do you have a fever? A cough? Have you traveled outside the US? And you are required to wash your hands with germ x or purel. With that said, at work they have removed all gloves from the bedside and al purel from the rooms. Patients had been stealing our supplies. If a patient is a PUI (person under investigation) they will be tested as if they have the virus until confirmed then shipped out to Tomball or another hub. It is a tedious process to don and doff the PPE (gowns, gloves, face masks, shields). We do not have enough supplies and they have implemented someone in the hospital who is checking out equipment for each nurse for each patient use and checks it back in at the end of the shift. It’s so crazy to see us in this medical crisis. My educator for women’s services is from NYC and said her nurse friends there who normally work with babies in the NICU are now at the bedside on the medical units helping with the coronavirus patients. Nurses are given a quick training session on how to use the vents, something that usually takes months of training in. They are all expected to care for the ICU critical patients. It’s scary for your health as a nurse and your license. 

So my health...which is what this blog is suppose to really be about anyways is kind of concerning to me as a stage four cancer patient. I had scans done last week and they found a 9mm lymph node in my right axilla or armpit. I was sent for an ultrasound yesterday to confirm and yes it was seen. They ended up trying to do a core needle biopsy but the lymph node is too deep and even a long spinal needle would not reach it to give adequate tissue samples. So now I’m waiting to be sent to interventional radiology to try to get a biopsy there. I also had a brain MRI yesterday for some weird headaches I had been having. They wake me up out of a dead sleep and my pain is a stabbing pain behind my eyes and frontal lobe of my brain( forehead). This has happened 10 times maybe in the night and upon rising in the past month so we decided I should be scanned. The other thing new was on the chest CT last week there shows a new nodule, less than a centimeter on the right lung in the pleural lining. Will keep an eye on it but it’s too small to test or treat right now. And then my right shoulder or humoral head has a 3mm sclerotic lesion that hasn’t changed in size over the last three scans. It’s so small it doesn’t pick up on the bone scan. But the Ct scan does show it. My doctor is very confident even with spots popping up in scans, that they are being controlled and staying small for now with the hormone blocker medication I take, Femara. He doesn’t see that we need to add an oral chemo just yet. I, on the other hand am concerned that I have cancer lurking around in my body. As a stage four patient spots are going to pop up. We just need to control how fast. And that we do by chasing the spots with medication that can buy us time. The last thing we want is to be naive about a symptom I’m having or not change treatment in a timely manner. Like I’ve said, it’s not IF the cancer will come back, it’s WHEN. It’s in my lymph nodes and we knew that back in 2014 with my initial diagnose. The lymph nodes are compared to a super highway. Once in there cancer can go wherever the hell it wants. I’ve been fortunate this far in the fact mine has landed in places in my spine that were able to be treated with targeted radiation. Those spots are stable right now. I’m having no neurological deficits with it being so close to my spinal cord. That’s great news! The new spots are small and we will continue to scan every three months to watch them closely. For now, the doctor wants to know what the enlarged lymph node is about so I will do as I’m told and give the biopsy another try. 

Chest CT-atelectasis in right lower lobe

My chest CT is showing atelectasis which is most likely from radiation damage, irreversible. I do get short of breath going up stairs and over exerting myself but I’m overweight by 50 lbs at least. It’s normal for fat people to struggle with exercise.  They will just continue to monitor it. Same with the spot on my right humoral head. Just watch it. My last CT of the chest did let the radiologist view my T7 & T8 radiated spots and verifies they are still stable. Love it when there’s nothing to report that’s negative. Next scan in December is an MRI of the spine. I guess my leash is still a short one. They watch me so closely and so frequently that it’s easy to get frustrated and annoyed. But negative scans are good and nothing new is what we pray for. 

As I write this, sitting in first class on a 787 airplane out of Newark, I realize I’m so blessed to have just spent five days in New York/Newark with my love so he could go rub elbows with other IT geeks. I realize that maybe I really do need a bucket list to be working on to truly live my life! I didn’t even know NYC was on that list...but Erik knew I’d love it like I did.  New York was amazing and my eyes were wide just like a kid on Christmas morning. The lights, the sounds, and people, and traffic, transportation,  and abundance of police, the shops, and restaurants, the locals and even homeless. The “melting pot” of the country, the largest city in all the USA. I loved it all! I was in awe! I really am blessed to get to share things like this with Erik, who is always there to support me, love me, and spoil me. 

College move in day

Moving in my only daughter to SHSU where she will be starting her studies in Pre nursing classes. I’m so proud of her for wanting to follow in my footsteps. It more excited she will understand my diagnosis and be able to help me when I’m at the end of my journey to take the weight off my husband. Not that I’m wishing for her to experience the inevitable but I will be glad it’s her by my side helping the family understand what is happening to me. It’s bittersweet watching her leave my nest and go out exploring on her own. I will miss knowing she is tucked away safe in her room at night just a flight of stairs away. I will miss the jibber jabber and countless hours of talking only she could do. I will even miss the attitude which seems weird. She’s growing into herself and finding her way. She’s becoming the woman she wants to be. She’s been through so much in her short 18 years and I’m hoping to see what happens these next 18 years as she becomes a nurse, if that’s what she chooses, a wife and a mother someday. I pray she never has to experience breast cancer like me. I know she will always worry and I pray too she can find peace. I pray I get to see my grand babies from all my children and go on trips and travel. I pray cancer doesn’t take me down too fast and I can enjoy my life instead of worry about the next scan or next spot. I’m just so proud right now of my two oldest children for going to college and I know cancer can not take this emotion from me! 

Research on Ibrance and faslodex

FASLODEX is given on Days 1, 15, and 29 of the first month and then once a month thereafter. Your treatment consists of 2 injections into your buttock muscle, administered by a health care professional. The 500 mg dose is given as 2 injections of 250 mg each, 1 into each buttock. 

SIDE EFFECTS:

Pain/swelling/redness at the injection site, nausea, vomiting, loss of appetite, constipation, diarrhea, upset stomach, dizziness, tiredness, weakness, headache, body aches/pains, flushing and sweating (hot flushes/hot flashes), or trouble sleeping may occur.

The cost for Faslodex intramuscular solution (50 mg/mL) is around $2,033 for a supply of 10 milliliters,

One shot 

USES: Faslodex is used to treat breast cancer that has spread to other areas of the body in women who have gone through "the change of life" (menopause). It is used in patients who have not responded well to other medications (e.g., tamoxifen). Breast cancer cells need the hormone estrogen in order to grow.

The cost for Ibrance oral capsule 75 mg is around $12,387 for a supply of 21 capsules

The most common side effects of Ibrance are:

anemia (low red blood cell count)

fatigue

nausea

neuropathy

mouth sores

hair thinning or loss

diarrhea

vomiting

weakness

decreased appetite

New spot on right humoral head, aka shoulder

So after this last bone scan  I took a photo of the image on the screen before the test was read and even to this uneducated scan reader I saw the spot. 
The CT scan reveled something different. It detected the spot in the impression. 



 At first the doctor I felt tried to blow it off. But being the nurse and annoying patient I am, I questioned why they described it as sclerotic, a word used to describe my other mets. I sent an email to the team asking for a second radiologist to read the scans. Quickly after,  I received a call from my oncologist and now on Sept 10 I get to have another bone scan, a CT scan, and an MRI of my T7. All on the same day. Pays to be persistent. If this actually comes back as another Mets, it will change my whole treatment plan. I will restart Ibrance, the $14,000/month before insurance, oral chemo and faslodex injections. Which I hear the side effects are bad. So here’s to waiting a month worrying again of what is growing in me. 

Cruise funny 2019

In July we took the family on a Royal Caribbean cruise for Jaelyn’s graduation celebratory vacation. Before we got on the ship I was approached by one worker asking if there was a reason the coast guard would be detecting large amounts of radiation when they walked close to me. I immediately confessed it had to be me, no one else around me. They took me behind closed doors to talk to 3 coast guard officers and explain I was a stage four cancer patient and just had a bone scan and ct scan the day before. They felt sorry for me and did tell me the detectors were going off as I was just standing there. Lucky for me they didn’t require any paperwork from my physician and let me on the ship. 

T7 radiation

Jaelyn helped me thru the T7 radiation by going to all three treatments with me. It was the week I started back on day shift so I was completely beat by the end of the week, both physically and mentally. The radiation was the same as the T8 spot. Only I had three fractions instead of the one. They tried to talk me into going in a clinical trial but I opted out. Overall it was a breeze. I have my repeat MRI coming up in September, three months from the radiation to see if it is stable.