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Nanelle's 1st Caring Bridge post

If you are visiting this page, you likely know me.  And if you know me, you know I’m a shy and highly private person.  However, I thought perhaps I should have a place to share updates as it is difficult to text and call so many with the same news but I want to stay in touch with you all.  I hope this helps. 


Shall we start from the beginning of this wretched story?  In September 2018, on my 12th anniversary weekend, at the age of 37, I happened to find a small lump in my breast.  I assumed it would be nothing.  I had no family history and was not considered high risk for any reason and in fact, fell in the low risk category for breast cancer.  I had only just stopped breast feeding Conor not that long before so I assumed it would just be some random issue related to that.  


My OB ordered a mammogram and the radiologist  followed it up with an ultrasound and then he came in to tell me I would need a biopsy.  He said it was a good thing I came in before regular mammography is recommended at age 40.  He said nothing but he knew.  I could tell and even though I held onto hope, it was just a matter of time that that biopsy would turn in to more biopsies and more tests and scans and I would know that I had breast cancer.   It was Hormone Positive/Her2 Negative and Grade 2.  Everything moved very fast and there was a large panel of doctors and staff that discussed my case and determined my treatment plan.  Because it was found also in my underarm lymph nodes, it was at least stage 2.  The plan was to be 16 chemo treatments, followed by surgery, followed by 34 treatments of radiation and then I would be cured but would also need endocrine therapy to maintain that. You don’t know your actual stage unless you have surgery first but we knew it wasn’t stage 4 so my main team of doctors included my medical oncologist, surgical oncologist and radiation oncologist and they were all very optimistic that this would be curative treatment.  They also do a genetic test for breast cancer patients to help determine the plan.  I was negative for BRCAs but positive for a gene mutation called CHEK2 which is a tumor suppressing gene that helps prevent cancer from forming.  But if you have this mutation, this function is compromised.  The doctors said this was the cause of the cancer and that family should be tested so that their kids know if they need to be screened earlier.  I strongly support this because if you catch breast cancer early, in Stage 0 or 1, the treatment is much less intense and your chance of long term survival is nearly 100%.  


So, with many, many bumps in the road, including Kevin being diagnosed with Thyroid cancer and having 2 surgeries, including 4 surgeries for me and with tons of help from you all, I finished this treatment at the very end of 2019. 2020 was to be a great year and it started out that way.  Everyone is familiar with the sudden shift in our lives last March but my family and I were able to spend amazing weeks in Wisconsin, some with Kevin’s parents, hiking and biking and enjoying life, despite the covid challenges.  We continued to have a great summer.  We could occasionally spend time with family and friends outdoors.  I was feeling good and although dealing with side effects of the endocrine therapy, knew that all was well.  I had follow up mammograms and tests and no concerns.  We enjoyed an amazing week in Michigan with my sister and her family.  Then the fall came, schools continued to be closed.  Heartbreaking to see the kids missing out on so much but we continued to see some friends and family outdoors and we were getting through the quarantine as well as we could. For this worry prone mama, I secretly love having all my baby birds in the nest.  And Kevins commute can not be beat.  It has been wonderful having him in the house all the time.  


Right after Halloween, the weather shifted, covid cases were up and we thought it best to really buckle down in isolation.  I had had a checkup and my bloodwork was looking a little suspicious.  Not terrible, but my white blood count, red blood count and platelets were all slightly below the normal range so my oncologist said it could still be from all the treatment and we would monitor it.  In November I started feeling a lot of pain in my joints and bones.  I saw a podiatrist for foot pain who said it was inflammation and to wear better shoes.  I even woke up one morning with terrible jaw pain.  The dentist said it was inflamed and not working properly.  Likely due to stress and grinding because of covid.  He had been seeing it a lot.  Everything always had a reason.  But the pain continued to get worse.  There were  flare ups where I couldn’t get out of bed for days.  I couldn’t even move a muscle without crying in pain.   So, my oncologist agreed I could stop taking the hormone therapy pills because they are known to cause joint pain and inflamation and in my mind they were the problem - follow up in 2 weeks and maybe we could try a different prescription.  2 weeks later and it wasn’t getting better.  So, my doctor ordered a variety  of blood tests for all sorts of viruses and issues.  It turned out my vitamin D levels were critically low and the red blood/white blood/platelets have all decreased further.  So I started taking a large dose of vitamin D and slowly my joint/bone pain improved.  But those blood cells continued to decrease (and other types of blood cells that shouldn’t be there were) so she ordered a leukemia screening because there is a particular leukemia that can result from cancer treatment but itself is treatable.  That was negative so still no answers.  At this point I was starting to feel really weak and I had more symptoms - now frequent headaches with swimming vision.  So she sent me for a brain MRI with an iv contrast .  It was mostly clear, nothing of major concern, but there was one area related to the bone marrow that was suspicious and another area that they couldn’t rule out as a tumor so I was to schedule a follow up MRI in 4 months.  I now was feeling weaker by the day and short of breath with any physical activity.  We went to Wisconsin on January 16th and hoped to stay for a couple weeks but as soon as we got there I started having stomach pains and digestive track issues and the other symptoms were getting worse.  I even had some new weird symptoms like super wrinkly hands and a numb chin.  I also developed a dry cough. We stayed the week and it never improved so we came back home.  


I immediately had a covid test and it was negative.  I scheduled an appointment with a GI doctor and he was perplexed but prescribed some medicine to try and alleviate some of the pain (hasn’t helped) and ordered an abdominal ultrasound and X-ray.  I had the ultrasound and X-ray just done yesterday and the results didn’t really show anything concerning with my digestive track however the ultrasound was also of my liver and it showed that it was covered in tumors and they are highly suspicious of breast cancer metastasis.  From my experience, I know this language means it is all but certain that the cancer has reoccurred and is now Stage 4.  This means it is no longer curative but can still be treated as a chronic condition.  The abdominal x-ray had suspicious findings in some of my bones. I was due for my biannual mammogram that I had previously scheduled for today.  The technician did the initial images and then they talked to the radiologist.  He wanted more images done and after that wanted an ultrasound.  So again, I knew.  He came in to tell me he found 2 masses in the same breast as my original cancer and that they were highly suspicious for malignancy and I would need a biopsy.  Again, he knows.  I know.  We all know what the results of that will be.  But the pathology will help determine the treatment plan.  After a couple hours doing those tests, I headed to another location to see my oncologist.  She went over the latest results and used the “we don’t know what we are dealing with yet, let’s not get ahead of ourselves, but we both know it’s Stage 4” type of language.  She was concerned with how fast things seem to be progressing.  6 months ago my mammogram was clear.  My numb chin is quite concerning but my brain MRI was clear just 4 weeks ago. She suspects that my abdominal pain is due to my liver.  She ordered more blood work and that showed that my calcium and liver function related tests were all highly elevated and said that I will need to go back to her office to get an injection of some medicine to hopefully help decrease my calcium levels.  I have a bone scan tomorrow where I will have an IV of a radioactive glucose substance, wait two hours and then have the 1/2 hour scan where you try not to move.  Next week I have the breast biopsy scheduled, the bone scan will determine any other biopsy needs.  From those results, we will determine the treatment plan.  


When I had finished chemo, there was a chance all the cancer was gone.  And then I had the surgery and there was a lot of residual tumor.  So we knew there was a high risk of reoccurrence because it obviously didn’t get all the cancer in the main site, if there were any rogue cells about, it may not have gotten those either.  Not to mention my tumor suppressing gene may not be doing it’s job.  It’s only been a year but I feel like I was living with a ticking time bomb.  I hoped that this day wouldn’t come.  I knew the stats. But I hoped I had done enough and continued to do enough for this not to happen.  


Although we don’t have the full picture yet and don’t actually have a diagnosis, there are so many things different this time.   Before, I never had any symptoms from the cancer itself, only treatments and yes, there were plenty.  Now all these symptoms are caused by the cancer wreaking havoc in my body.  Before the pain had a purpose, it was killing the cancer.  Now I fear that the cancer is doing the killing.  Hopefully I can get started on some treatment soon and hopefully the tumors respond to it.  I’ll do all I can because I am certainly motivated.  I have 4 kids who need a mother.  A husband who needs a wife.  And memories to make with all those I love.   For now, I hope you all take a deep breath and enjoy the feeling of being able to.  Snuggle up with your kids and enjoy every moment... that’s my plan.    


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