Dawn’s Story

Site created on December 19, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Where have I been:
- Sebaceous Carcinoma in 2018
*Finding out I have LFS (Li Freumini Syndrome) and will be more likely to have cancer,  2018
- ALL (Acute Lymphoblastic Leukemia) in 2018-2021


 What's Happening Now: 
Well, it’s been a while… (not long enough)…. But I am calling back all my supporters as I start a new battle.

Thursday July 28th I had my 6 month mammogram.   Nothing has been bothering me, my labs have been fine, I expected … nothing / “Boring Results”

Friday the 29th, I got a call that they thought there may be something different about my images and asked me to come in again on Monday.  

Monday August 1st I went in and they did more mammogram images from different angles (great!, more angles should certainly show them it is fine).   That tech left to show the Radiologist and came back to say they wanted me over in Ultrasound right away.   I sat in Ultrasound while a tech looked and looked and looked … and finally went to show the radiologist her images.   All while telling me nothing.  The Radiologist came in and did her own ultrasound images.   After 3 rounds of images, they finally let me sit up to discuss what they were doing.   They did indeed see something that wasn’t there before, they believe it is small, but it is something.   The ultrasound tech is VERY good at her job because it was very difficult to find.   But, the outcome was that they wanted to do a biopsy … immediately.   So, prepped, numbed, stabbed, bandaged, iced, … sent on my way.   I was told 1 -2 days to hear.   The titanium marker they placed where the biopsy was taken was Critical in my case she said, because they would never find this spot again (for further treatment) without it. 

Test results online show: Infiltrating Ductal Carcinoma, Grade 3 (additional Estrogen, Progesterone, HER2 tests to follow, in a week or so).    

I have breast cancer. 

Wednesday August 3rd – I called the breast center and they called me back mid morning.   They asked if I saw the results and if I understood what was happening.   They told me that the first step is to have surgery and I was going to meet with a surgeon at 11am… today.   I met with a surgeon in NR who was amazing and gave me good perspective on what we are fighting, how it will go, etc.   Yes, this cancer is usually treated with Lumpectomy and Radiation, I am not doing either of those things.   I had been researching a prophylactic (precautionary) mastectomy and reconstruction anyway, this was just forcing that to happen, now.   Radiation is not the best course for me (due to the LFS, we don’t want to encourage other cancer growth).  So we hope and pray that the hormone testing shows I can do Chemo or less.  The negative about this meeting was finding out that he was not the one who would be doing surgery on me.   I have to meet with others.   So, he ordered an MRI with sedation, surgeons to be scheduled, etc.   I am back in the hands of the Breast Center.   Meeting with a mastectomy surgeon next week and plastics surgeon the week after and hopefully surgery following quickly after that. 




Day 1 of cancer, when you have done this before = Making lists  

(things I need to do or buy before I am out of commission, things I need to prep for the kids and Derrick, questions for all doctors involved, etc. )  At least this time, I have the time to do this…

Asking for prayers again.   You all brought me through a war before.   This new battle is frightening.   I appreciate all the love and can’t express that enough.  

So, here we are again, and I will do my best to update everyone here.   










When it all began.... 

While I was pregnant with our baby Kaden, I had many issues or symptoms that were different than with Addi. I was in the ER several times at the end because of Arm pain, chest pain, crazy blood levels, etc.  All were dismissed as things they couldn't determine and I just attributed them to pregnancy.  My high BP, baby laying on my spine, etc.  I also developed a bump on my lower eyelid that was annoying to look at but didn't bother me.  I visited an eye dr. who suggested waiting until I delivered Kaden to have it removed due to the medication they give. We had Kaden at the beginning of November and then the week of Thanksgiving I went in and had the bump removed.  The dr. said be believed it to just be a cyst but they send everything they cut off in to pathology.  I got a call the next week that they found cancerous cells and would be referring me to Oncology at Regions again "just to check" and be sure there are no other issues.  

During my first Oncology visit, the dr. told me that she wanted to run several tests because of family history, my blood levels, and my symptoms while pregnant. Over the next couple weeks I had Oncology visits, a CT, an MRI, Genetic Counseling, a bone biopsy, and a PET scan. During my second Oncology visit, my dr. told me she believed the cancer I had in my eye had metastasized to my bones.   This was rare and incurable.  My first diagnosis was that I was going to die within months or a couple years.  To confirm what she thought, she ordered the biopsy of my chest bone which is where they saw cancer (also in my arm).  I was also scheduled for a PET to scan my body to see where the cancer was. 

December 21st I had the PET in the morning and was radioactive for several hours and couldn't be around the kids. Then I was scheduled to meet with my Oncologist in the afternoon to hear results.  I was with my Sister in Law driving between appointments and the Oncologist called with my final diagnosis.  

I have Acute Lymphoblastic Leukemia (ALL).   My oncologist then said that I needed to check into the hospital that day (within the hour) to begin treatment for a month.  I had to go home and pack a bag.  I couldn't hug or kiss my kids.  I was scooped up and thrown in the hospital for a month of induction Chemo.  Days before Christmas.  

During the beginning of diagnosing, they had me meet with a genetic counselor because there seemed to be a pattern in our family.  My mother passed at an early age after fighting 2 types of cancer.  Along with other family members having had cancer.  Blood was drawn and sent in to determine if my DNA was causing cancer.  

While in the hospital, they came with those results.   I have Li Freumini syndrome. It is rare. It is inherited. It causes the risk of developing certain types of cancer in a lifetime to increase by 93%. Now, that is the high level statistic. It does increase over a lifetime. So, at a high level, it increases at ages 20, 40, 60, etc. From 25% to 40% to 88%, etc (different for men and women... higher for women). This syndrome, from what they know, affects 1st degree relatives by 50%. So, a 50/50 chance of having the syndrome. Types of cancer that are more likely to happen: breast, colon, brain tumors, carcinomas (my eye), and Acute Leukemia.

Logistically this makes our lives harder. More screenings and tests for my life and the kids. More caution. More watching. We have to make a plan with my Dr. for my future screenings. And a pediatric team for the kids. I pray that we find the Right team who knows what to tell us to do and set us up (as best they can) for success to start down this path. We need experts.

Newest Update

Journal entry by dawn jacobson

I know it's been a while since I updated.   Not much happening until recently.   And then it all came fast.    I wasn't sure if I'd be sharing but it is an important step in my lifetime journey with LFS.   

Yesterday I had a total hysterectomy (Uterus, tubes, etc) and
oophorectomy (ovary removal).   I began meeting with this surgeon from MN oncology a few months ago to discuss maybe getting this done "sometime" this year.   Meeting her one time (and the glowing review of her by one of her staff whom I have known many years), was all I needed to be certain she was the one for me.   I've met a LOT of medical staff, doctors, surgeons along the way and she is one of 2 I've met that have this magical gift of being THE very best surgeon (a genius in their craft) AND an amazing human being.    She is kind, intelligent and direct, compassionate and she makes a deep connection with everyone of her patients.   She was over me with tears in her eyes comforting me and taking in every word I said the first day I met her AND yesterday hours before surgery.   Ugh, I could go on for hours about the blessing she was to me.  Every staff member of her team AND united hospital (that have just worked with her occasionally) rave about her the same way I am.  That says a lot.   

 
Anyway, when meeting with her she took in all of my information and we discussed many options.   Getting EVERYTHING removed is the right thing for me to avoid future soft tissue cancers, uterine, etc.    And to give me some peace of not dealing with monthly cycles during all of my other treatments. Things were pretty bad recently for me and it was becoming more difficult to make it through each month. She said she did surgery at 2 hospitals ...st. John's in Woodbury and United in St. Paul.  I've never been to either and they seemed equal in distance.  Her lean to United was because they have a suburb pathology department who has a tendency to pay attention to detail.   In my instance she wanted them to evaluate every single bit of what came out to look for cancer, growth, potential, etc.     Having the peace of mind that I was ok after.   That made 100% sense to me so United it was.   Oof, I second guessed that choice yesterday.  
 
Getting to yesterday was a bit of a circus because of me.  I have been getting treatment for the breast cancer every 3 weeks.  It's a drug that is known to harm heart function.  So, I am getting Echos often.  My Echo in Jan was normal for me.  Then in May my Ejection Fraction (the amount the heart pumps out) dropped by 10%.  So I was 5% from heartfailure.  We stopped treatment for a couple months to allow my heart to heal and for surgery to happen.   Last week they re did it and I was back up between 5 and 10% from where I was.   Good to have surgery at least.  We will check again in a couple months and resume treatment after recovery. 
 
We arrived at United early and were completely checked in by the time we were supposed to arrive.   We sat and watched everyone else go back for 45 min after we were due to start pre op.   There was a 2 hour pre op window scheduled....so we were down to 1 hour and 15ish.  This becomes important later.  
 
When we finally get called back it's by 2 nurses ... one in training.  The other was very VERY good but was verrrry annoyed by the trainee and had to keep her doing the right things and correcting her.  They did the regular questions and procedures.   Then the nurse says "do you want us to see about using your port for one of the acceses?"   Yes!   So she calls anesthesia and he says yes ...one port and one IV.   She puts both orders in.   IV comes right away and puts in a beautiful Ultrasound guided IV. Then we wait and wait and wait.  The nurse says ... port people won't come and say they are too busy.   So we now have an "emergency" and need ...type and screen, labs, glucose etc. Now!   They call the lab people.  They proceed to poke and dig all over my arm 5 times.   Nothing but enough to fill a NICU tube out of the 5th jab.  They say they will try that.   Meanwhile I've been crying and sobbing, trying not to scream, as many people are in and out trying to introduce themselves or talk to me.  Including the anesthesiologist who looked appalled by what was happening.    My good nurse calls and chews out the port people and is probably going to get written up for it.  (I'll be calling to be sure that doesn't happen)  She was amazing.  During all of this Derrick is sitting by my side holding my hand but im not sure if that was just to comfort me or to hold him back from going through a wall.  He kept asking them to explain why the H*ll they weren't listening to me or using my port.    They finally came and accessed my port.   No blood return.   So the port person says it's fine...they'll put in the meds to make it work ( I am familiar with this happening and the meds..they work wonders. Super easy)  before surgery and then let it marinate while I'm under.   She leaves and the good nurse comes in saying the NICU tube wasn't enough so "thank goodness" i have a port access. I tell her it doesn't work and she literally yelled "WHAT?!" and ran out.  Apparently they were racing against the clock because the OR was waiting...guess what, if they had started me on time.... We'd be fine. (Me thinking: Please don't panic and rush things I can't control because of your timing!  ) Anyway, I watch 10 nurses and doctors have a huddle outside my room about me and come back in with Ultrasound IV again who does a 2nd beautiful IV that hurt a lot more this time from all the previous poking.  
 
She gets done and the anesthesiologist literally snatches me and rolls me away, almost pushing everyone else out of the way.   He treated me so well and gave me a good dose of meds immediately, in the hallway.   He apparently also called the port people to chew them out.   He took really good care of me.  My surgeon was amazing, as expected.   She had been in pre op before the poking started, when I was calm, and .... she is just a magical human being.   So so so kind.   When she was in we talked about how it was my choice to stay a night or go and that she prepared for either.   I originally planned to stay because she said she wanted to see how I did back on my eliquis, etc. And making sure that me stopping bleeding wasn't going to be an issue.   She felt comfortable with my judgement.  Surgery was exactly the amount of time expected.   She updated Derrick and said she took good care of me.  Love her.  Appreciate her gift, talent and time.  And I'll never be able to thank or repay her enough. 
 
End of surgery and I start waking up (2 1/2 hours later).   In hell.   Shared space with curtains not fully drawn.   Guy next to me at least half naked watching me.  I'm partially exposed.   Nurse between doesn't give a crap and is yelling at me.   Yes, I understand she started yelling because I was stopping breathing.  But she took it too far.   She was yelling at me for wiping tears from my eyes.   Saying I'll scratch my corneas ... and grabbing my hand.  Then she called the respiratory people and that guy was forcing a mask on my face and trying to buckle it on.  I literally had to push him away several times screaming no.   If I am crying and yelling...I'm breathing.   I basically got myself out of bed and made them take me to the bathroom ...even though she yelled it was dangerous... so I could cry by myself.   In that time her shift ended and when I got back she gave me to someone else.  That nurse was amazing.  She took excellent care of me.  I apologized for crying and told her what had happened and she said she knew already and the previous nurse is aggressive and rude all the time.   She then discovers the reason my oxygen was dropping was because they hadn't given me any pain meds and I was wincing and gasping.    She rushed to get me double pain meds and a canuala for  air when i was having shooting pain.   I was able to lay down again and rest.   She was amazing.  She took me all the way to my room.    
In the room ...again..shared space.  And the other side of the curtain was having a bad time too (not being taken care of). Finally back with Derrick who expected to see me hours ago.   Anyway, the next 3 hours were basically me fighting with the nurses to do what they needed to do to let me leave! After all of that, I wanted to go home.   They were dead set against it and dragging their feet.   They would say they needed to "find something" and then disappear for half hour.   There was barely anyone on the floor in other rooms, so they weren't swamped.  Finally they listened and called my surgeon and she said, absolutely let her go home if she is demanding it.  I wonder if she pieced together what I had been through.  So then they stalled saying the pharmacy was backed up.  And they went back and forth about how they messed up and never gave me meds for my port so now they didn't want to.  I have to go to local dr. In the next couple days to get helped.   I had to explain and beg them to at least put heparin in because I didn't want a clot ...she didn't know what I was talking about.   The post op room was 75 degrees.  In pre op they set it to 78.   Uncomfortable.  Angry.   Frustrated.  In pain.   Terrible no good awful very bad day.   
 
They wheeled me downstairs and sent Derrick to get the car.  I was SO done with that place that I was going to hike across the street to the parking ramp 3rd floor.  The spicy CNA who wheeled me downstairs pushed my shoulder back down into my chair and just nodded, nope! She said ... "he will get the car to YOU".  Yes, mam.  There was no point in arguing.  Lol
 
On the drive home I told Derrick that if I began bleeding out or whatever, he better drive me to anywhere but there because I'm not stepping foot in United ever ever again.  
 
Home never felt so good.   Hugging my (surprised to see me) babies, never felt so good.   Pain is manageable.  Moving slow.  Look like a wreck.   But I'm here.   Changed plans for today too and had Derrick stay with me, just in case.   That's my attempt at trying not to be a hard head and rest / recover as directed.   Tomorrow may be a different story.  Lol
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