Current update

I haven't been doing much blogging lately, sorry! I have been working part time so keeping busy. I had my left breast exchange surgery and am recovering well. I have also met with a pulmanologist who thinks the nodule is possibly a Hystoplasma solid pulmonary nodule. He can't rule out cancer and it is too small to biopsy so we put me on a 3-6 month routine follow up CT scan comparison schedule. My liver MRI is possibly  modular hyperplasia, but again, they can't rule out cancer. More follow up on that in 3-6 months too. I'll see the oncologist , who is back from maternity leave, in November. After that I can schedule my right side reconstruction. Lattimus Doris flap. Scary, but I want to have some Sumatra back.

Thinking about my dad.

On September 14, 1995, Jeff and I were asked by my mom to go to our house in Flad to check on dad. He wasn't answering the phone and had been to the doctor earlier that day for a working and X-rays. We got there and found him on the couch bed he had folded out. He was so weak he couldn't climb the stairs one flight to get to bed. I called mom, called my sister and we decided to drive him to the hospital. Deaconess emergency room. I wish we had taken him to SLU. Gah. They checked him out in the ER and gathered all of us around to go over his X-rays and apparent MRI from his doc's office and it showed multiple golf ball sized tumors in his liver. I knew it was cancer. Dangit! He was 49 years old, heavy 3 pack a day smoker and a heavy beer drinker. This was not good. He had plurecy a few years before, he had a battle of melanoma on his neck/ear too. Not good news. After more tests, admitting him and stabilizing him, we learned he had maras tatie cancer in his lungs, liver and bone. 

We miss him so much. He lived from diagnosis of Sept14th to December 15th, 1995 when he took his last breath. 

I cannot believe I am younger then him when I was diagnosed with breast cancer. This BRCA2 hormone driven cancer. Ugh. 

Frequent flyer miles don't work for hospital visits!

Bing Bing Bing  bong.....rrrrrrrrrrrrr, Bing, , Bing Bing Bing Bing boooooonnnggggg.. Guess what machine I visited at the hospital today?!!  It involved earplugs, thank goodness. 

MRI on liver done

Times change, but procedures too?

I haven't been to the Cancer Center in a few weeks so I thought I'd make a trip back. Needing answers on what these liver and lung spots are doing. 

I parked top parking garage and headed to the lab with 40 minutes to my appointment time. They changed procedures on me. Kicking out the straight to the lab process to now a registration process. Change noted. I'll make sure I give myself at least 50 minutes for registration and then blood work before I see the oncologist for the future. 

My oncologist is still on maternity leave so I'll be seeing Dr. B. We are going to have a smack down about them now not wanting to do MRI's on liver and lung spots. Ugh second and third opinions looming! Time to gather my records at the hospital. Anyone know a good recommendation for next opinion? 

I am recovering well from the left boob exchange surgery last Thursday. I do hurt a bit, but it is tolerable. 

Reading Harry Potter and The Cursed Child while waiting. 

Poor kiddo is down sick with strep again. 

Ok, off to read. Behave, I'm trying to! 

Do the exchange dance...

Today was the Time for the next round of surgery. Nervous as all get out as this is a new surgery center location for my plastic surgeon (Barnes -Wash U). Didn't sleep much, but looking forward to the twilight sleep by IV soon. Ahhhhh

Send good vibes for the doctor and his surgical staff and a prayer to calm my nerves. Thank you all. This surgery should be outpatient, so hopefully I'll be home later today.

UPDATE: 6 pm.   Been At home resting (I just took a good 2 hour Percocet induced nap, Ahhhhh). Thanks for the good vibes! Next, healing and rest. Thanks to the hubby for entertaining me.

Having a Thankful kind of day...

As I woke up this morning, I was blessed to have our daughter sleeping next to me. She just spent one week in Florida with her cousin, Aunt and Uncle. Her first trip to Destin and the beach. We went to Walt Disney Workd in February 2014 so She was no stranger to Florida, but got to experience the beach and swim in the ocean for the first time. We missed her so, but glad she got to experience this at such an impresionable age. She will turn 9 in late September. 

Here are a few highlights:

Thankful!

Today, I am thankful! 

Appointments to do...

Getting a work up for surgery in a few weeks for exchange. The staff is so nice here. I did get another fill in the left expander. 570cc's now. That was the last fill. Surgery is the 18th of August for exchange. Was hoping for a date sooner, but I'll take it. MRI is scheduled the 25th for the liver spot and lung. 

Also went for a walk in the Central West End between appointments and found a great deli to eat at called Pickles Deli. Yum. I ordered a nice sandwich with yummy avocado spread. I took one bite and got called back to the hospital. LoL can't wait to have another bite. 

Cheers to all! Have a great day. Get out and enjoy the Sun!

Working and hot flash city

Since I had my oophorectomy (ovaries removed), my hot flashes are picking up now that I am in full blown menopause. Sweating is no fun, but seems to be helping me realize that that surgery reduced my risk of getting ovarian cancer with the BRCA2+ mutation. I'll take the hot flashes. 

I am dealing with swelling in my legs and arms again, but thankfully no blood clots. The doc is going to start me on another diuretic as I was allergic to ferosamide. 

I have been helping out my sister with her cleaning business. It is great to get a good work out. I can feel my breast muscles complaining, but it actually helps tone up these pecks in prep to left side exchange and reconstruction hopefully in the fall. 

I am gaining energy and hope to keep going. 

One year ago today, no more ta-ta's

As I woke up this morning. I put my feet on the ground and said my prayers. I am CANCER free exactly one year from my Bilateral Mastectomy to get rid of the stage 2b grade III (found early, but very aggressive). I had 8 tumors of Invasive Ductal Carcinoma. I found the smallest of the eight myself by doing my monthly exams in the shower. 

Little did I known that the stretch ahead of me last year would be very challenging, I would not have made it through without the help of you all, my family and friends! 

Thank you all for the calls, cards, meals, drives to and from and prayers and strength. 

Woot Woot! I am a warrior and will continue to celebrate and be thankful! Life can throw you curve balls and sometimes you strike out, but sometimes you can hit a Home Run!

I still have some tests to go, but I know I can fight through this 

Hugs and many many Thanks!  What a journey!

Can't participate in the breast cancer research study ...

Feeling sad that the spot on my liver and the spot on my lung has now excluded me from one of the pallis studies my oncologist and I were excited to get involved in. Just sad my body has let Me down and now I can't help in the name of research for those that might need a dual cocktail of maintenance drugs to keep recurrence of cancer from happening. The study board would only consider putting me in the study if I were to have biopsies on both spots not worth it. 

Damn body. 

Waiting to get only expander I have exchanged out hopefully in the next few weeks so I can get MRI's on those liver and lung spots. 

I am blessed, I know, to be alive, but having my body fail time and time again is sure getting old. Praying to God that these spots are not cancer.

Get the spiders off my skin

Neuropathy has a hold of all 4 limps tonight.... Time to get the doctor to prescribe something. Damn chemo and diabetes. I upped my walking and dropped a few lbs, but the swelling, tingling and pain makes me feel like I have 10,000 spiders crawling over all limbs. The struggle is real. I know this is a side effect of the cancer maintenance drugs I am on for the next 9.9 years. 

Ok, vent over. Thanks for listening. 

Adjusting to medications and post surgery

I am on week seven of my exemestane maintenance drug that I will take for 10 years. I am having some side effects and trying to deal with them is a pain. I am experiencing A large amount of leg hip knee joint pain and this can be a side effect of that medicine but also is a side effect of being menopausal now since my ovary removal surgery. I do get headaches and nosebleeds along with ringing in my ear. The doctor explained those are common side effects for both being on the maintenance pill and the after affects of being more menopausal my legs are swelling and I need to take some kind of Lasix but the Lasix that they gave me made me break out in hives ha ha have to call the primary doctor to get new medication.

Weathering the storms

Yesterday we had some pretty swift damaging storms move through the area. Thankfully nobody was hurt, but lots of tree damage and fences blown over, traffic lights down. 

As with weather storms I battle through days of storms and hopefully today's results will bring great news. I have 3 doctors appointments today. One with the plastic surgeons office for a fill. The next one is with the occupational therapist and then the oncologist. I get to have my port flushed today. Since I am not in treatment, I have to go back in monthly and have saline and helper ine run through my port to keep it open. Hopefully in a few months the doctor will give the OK to take the port out. I hear some say as soon as 6 months after chemo, but some longer. My last Chemo was in March so a few more months for mine maybe. 

Meanwhile, kiddo is going to summer camp, which she loves. I am trying to find some employment that will work around doctors appointments and we are trying to plan a mini family vacation soon before school starts too. 

Expanding to move on out

Yes, expanding the left expander by 60cc's today. I think that puts the leer arend 400cc's which is around 100 cc's short of wanting a comfortable size C or a small D.  We want to exchange this left over to a permanent implant so we can do some MRI's on my spots on the liver and lung. 

My right non expander flap is almost fully healed from radiation and the plastic surgeon seemed pretty pleased with that too, but did say that reconstructive surgery would be I. Late fall 2016. He likes the right pect flap, but knows it still has healing to do. The latissus flap reconstruction surgery is doable, but will most likely put me at a desk job from here on out. That is doable. 

I did get the full today which I was not expecting at.all. I am scheduled to come I. Again for another fill in a few weeks. 

Updates... Ovaries... Breast cancer, love hate!

Last Thursday I took another step of checking things off of my preventative care BRCA2 + lists. I had my ovaries removed. Bilateral Oophorectomy. Since my breast cancer was estrogen and progesterone driven, it was a choice to either go on hormone blocker shots for the rest of my life or have my ovaries extracted to stop any more estrogen and progesterone to be produced in my body.

 

Journaling thoughts

I was stage 1a grade 3 initially and after surgery was changed to stage 2b grade 3. (8 tumors in right breast in various sizes and after surgery , pathology found a lymph node that was removed to have a tumor so I had a second surgery to remove tier 1 , 14 nodes). Surgery was first because of the grade 3! Very aggressive. Then I did chemo then radiation. ER+, PG+, Her2-, but BRCA2 +

Bone density and check up

Today I had my first ever bone density scan. They requested one since chemotherapy can be so harsh on the body. I hope all is ok with it. Normal is ok!!'

I see dr. Busick today for the first time since my oncologist, dr. Rooney is out on maternity leave. I have a list of questions for him  so I hope I don't scare him off. Haha

I fill out the paperwork today to join the trial study of the Pallas randomized phase III trial of palbococlib with standard adjuvant endocrine therapy. This is an additional drug regimen for maintenance to help my system ward off any new or recurrent cancer. This is a 1/1 placebo so I might get the real drug or might not. That is the risk of these types of trials.

Today I feel good. Swelling in legs a bit and a slight headache, but I think these are side wffects of the exemestane 

Scans me baby

So I got my in remission status Friday, but I need a CT scan or my left lower lung lobe to check on a Lesion to see what it is. So today I go in for another CT scan this time of my chest and we'll cross our fingers that it's not then. Pray that it  is nothing.

Liver lung and remission

Watch on liver and lung, but I did get this great news

I just got my "you are in remission" statement from my oncologist on Friday. Yahoooooo! After nearly 1 year of treatments, I am a SURVIVOR!

Liver spot suspect and baby girls tonsils

So 12 mm spot on liver is my concern, apparently not the radiologists and they suggested to wait until August to do another CT scan, nope, I insisted on another CT scan now. I wanted a biopsy, but oncologist is saying no. Can't do MRI because of expander... Ultrasound was inconclusive to say if it was a cyst or mass. Fatty liver disease is what they can suggest. How do I let this go for 3 months?! Just frustrated. So far blood work is not showing liver levels as a concern.   CT scan some today, now I wait for radiologist to compare March CT to today's. CT scan was non-contrast because I am allergic to the IV dye (shellfish allergy) and drinkable contrast (sulfate). Haha, damn body

Prayers for out baby girl. She has surgery to remove tonsils and adenoids tomorrow.  

Only 3 more radiations to go and ultrasound

Today's ratification is done so I have only 3 more to go. My tech said goodbye to me as her last day this week is today. She wished me well! These ladies in there have been so caring, nice and comforting. I will be sure to send them thank you notes. 

Blistering and peeling is the current state of my right breast tissue along the mastectomy scar. Ouch! 

Today I am having an ultrasound on my liver. We found a spot on my liver that is of concern. Dr. Rooney hopes it is consistNt with a cyst and not a lei soon or tumor 

Day 16 of radiation done. Sunburn skin

They call it sunburn, I call it painful! 

The camera doesn't really show the burn setting in. I don't want to post a full frontal to compare sides. 

Thankful I am done with 16 days. Skin is tight. I am doing exercises and stretching, but it is rightening up as expected. My lymph node removal scar is very thin, but the radiological oncologist is saying this is normal and it shouldn't split open. I am blessed this is going well.

I see my oncologist on Momday. I believe I will be starting my preventive cancer maintenance meds that I will be taking for the next 10 years. Yes, 10. Many take maintenance drugs for 5 years, but due to my grade of cancer being stage 3 (very aggressive), I am taking them for 10. 

I will be participating in a 1/1 placebo drug study for 2 years also. This is for an additional maintenance drug that helps with recurrence. I'll post more about it later. 

Next focus is on our daughter. She has had strep throat 4 times since November so we are taking her to the ENT doc next Wednesday. 

Crazy eyelashes

This week I had a weird experience with my eyelashes. I kept having a feeling like I had something in my eye so I went and looked in the mirror and found two  of the craziest eyelashes ever. There were two super super long eyelashes that were growing back that were gray and they were curling into my eyes. I have never seen this happen or heard of it. I had to get the tweezers out and pluck them suckers. Crazy! 

My hair is starting to grow back pretty thick

Meditating during radiation

When I start my radiation in the morning, the machine begins and I immediately go into meditation mode and prayers.

 I chat with the technicians then they leave the room and the machine starts. I close my eyes and immediately begin with a prayer. "Father God, please help the technicians and doctor to rid my body of this cancer, make the area safe to never grow cancer back again and just eliminate any traces of cells that carry the mean cancer. The machine rotates, I watch the tech's rotate out radiation panels on the maachine and then it begins again. I meditate to envision the cancer flowing out of my body. They change radiation panels again and then I say another prayer while looking at the beautiful sky and tree mural on the ceiling. I ask Father God to keep walking with me , hold my hand, shoulder and arm to  know HE is there and to even carry me and make footprints in the sand on and in the hard moments ahead of me. I thank Him for my friends and familial you while they walk me through this. 

I always walk out of there with a great feeling that this is working. I am being healed! Thank YOU all for being there for me and my family. Day 11 of 33 treatments today. 

Radiation start and dental issues

I was told to expect Radiation to be easy in the beginning. Well, they were right. I was surprised as I started my first session of 33 today. It took me longer to drive there and back home than the treatment time took. Haha

 I was on the table at 8:20 and done in 20 minutes. Tomorrow should be even shorter of a time since they took a few extra images today. 

I stopped at Wally World and got my Cerave cream and aquaphor lotion. I am to put these on three times a day. 

This past week I noticed a change in one of my teeth's fillings. I went into the dentist yesterday expecting to get a new filling, but instead I left with a temporary crown. I cracked my filling and my tooth. I also cracked the filling/tooth in front of the first cracked tooth. Great. Now I need one crown and another soon. I was also told I  missing a filling top on an older crown that had a root canal done years back. In order to remedy these bad teeth issues I need to get a night guard made. I resisted the idea of a mouth guard for years due to my grinding of my teeth. 

Can you say this was an expensive week?! Haha

Two weeks post final chemo...

Today is two weeks post my final chemo therapy. Yes!!! Feeling better help the mind and body in so many ways. I am still battling some side effects, but things are getting better. 

Eye sight is blurry, neuropathy in feet from ankles to toes is evident still and in my fingers. You know, the pins and needles prickly feeling. Very aggravating, but I can deal with this. I don't have nausea anymore and that has helped my taste buds come back too. 

As my energy comes back, I am going to enjoy our daughters Spring Break. 

I go back in on April 1st to meet with Radiological oncologist for a CT scan and for radiation tattoos. 

I find it enlightened to a new sense of doing fun things. Let the great Spring weather make a way of happy times.

Closer to the end of chemo

Today is day 5 of my second to last chemo. Side effects are going as usual, for the most part. 

Bad taste buds, tingling neuropathy toes, feet and fingers. Raw sinuses, which I need to go buy an OTC nasal spray gel to help with the bloody noses. I have headaches due to the sinuses. Then there is the worrysome pains I am having in my left abdominal area just under my ribs is what we are focusing on now. The oncologist scheduled me for a CT scan yesterday. 

So for the next fun journey, yesterday i got to the hospital after occupational therapy for the lymphodema to get set up for the CT scan yesterday morning. They wanted me to do a liquid prep, but I am allergic to all sulfate a and the liquid clearly states it was a sulfate based drink. Strike one. The next guy came in and said they would need me to drink that solution, but I would have to do a benedryl and prednisone 13 hour prep prior to the scan. I said no, I would not drink that solution and to please call my oncologist. I can't do the IV contrast either because it is an iodine based infusion. Umm, I am allergic to iodine and it is because I am allergic to shell fish.  So after waiting another 30 minutes or so a female tech came to get me and again tried to get me to drink the liquid prep. I got pissed. Nobody was listening. I know my allergies and I refuse to let people bully me and tell me I am a liar and would not react to the liquid. She took me to the room for the CT and talked to her boss, who in turn said to do the CT without any contrast then. Scan was done and I was out of there in about 15 minutes. I wonder if the CT was even helpful since I can't have the contrast. Oh well. I just want to get answers as to why and what this pain is from. 

Oh my nose knows

This is week 10 of 12 Taxol chemo treatments. This week has been very tiresome. I just want to sleep, but sleep avoids me. I have another side effect of nose bleeds and bloody sinuses. Ahhhchooo. 

I know the chemo is killing any cancer cells, but I keep thinking it isn't working because my hair is coming back. The oncologist assured me the chemo is still doing its job. 

My hair is growing long. I am actually using shampoo again. It is a salt and pepper mix with a little dark brown in the back. I have my male pattern baldness still so I am lacking new growth on top, but there is some peach fuzz. 

I can't wait to get to the last treatment. Julia wants to go with us that day so I can ring the bell to signify my last chemo. I asked her to make me a poster to show it will be my last chemo. 

Radiation will start about three weeks after Chemo. 

The oncologist is studying our family genetic history for her genetics class and even presented our family tree to her professors in California. We have an extensive history of cancer in my paternal side going back three generations and proven BRCA 2 + history too. 

My oncologist is also looking into a trial she wants me to consider for post chemo maintenance drug study. More on that soon. 

My mind is spinning. I am wanting to write

I have so many things on my mind these days as I approach the later part of my Taxol chemo treatments and head to radiation soon. 

My mom always says I need to write a book. So I will journal some of the facts about my Breast Cancer case. I want to log these facts for my family and maybe friends to pass on for knowledge and prevention of breast cancer and other cancers related to the BRCA 2 mutation I carry. 

1) insurance sucks when it comes to members of family needing to be BRCA tested. Yes, my siblings can be tested, but my Aunts and uncles (except one that had BC, yes a male with BC) can't get insurance to cover their BRCA testing until their sibling is tested. My dad obviously had BRCA because I have it, but since he is deceased and was never tested, my Aunts and Uncles can't be tested because I am not their direct descendant. They will have to wait until my uncle, that had BC,  is tested and if he is negative will they deny testing them? 

Their paternal Aunt, My Great Aunt was one of 11 children and was BRCA2 +. 1 male, 10 females and if those 10 females 6 of them died of one or more cancers related to BRCA2 cancers. Uterine or Ovarian and or Breast.  My Great Grandpa was obviously a BRCA 2 mutation carrier.... 

Don't you think that is enough history of cancers to get insurance to cover BRCA tests without a direct sibling or parent having been tested, but passed away?! 

Port, oh port, why must we fight?

Reminder to self, bring a pain pill with me to chemo. Port is hurting bad. Silly dog jumped on me the other day and directly hit me in my port so apparently my tissue around the port is swollen.  Waiting on pain pill in order to calm this port and tissue down to get chemo started. 

I shed a few years, but I will get through this. 

Heading to have a dye study done on my port now. 

Tin can man, can I have your oil?

Someone took all the oil out of my joints. Damn you,  Chemo! Momma needs a drink!

Taxol and rest

Yesterday was a taxol chemo treatment day. Lots of delays in office, but we eventually got my IV hooked up and did this round. I asked the nurse what traatment of Taxol was this and she said 5, I thought it was 7. Now this is my new search because I thought we were on #7 of 12 Taxol, but maybe notwithstanding the few delays I have had. 

I had a two week delay here in January because I developed Shingles. Yuck. Dr. Fritz got me hooked up with Valtrex and an antibiotic for the lovely returning cellulitis on right breast at that same time as the shingles so we were able to knock out both by meds. 

Shingles was not fun. It was on my right back hip. Looked like a woman kissed me with shingles on the hip. Yup, in the shape of a set of lips. 

So I used Benadryl cream for the itching and pain med along with Valtrex to kill the shingles. Can you see the Chicken Pox in there, yes contained in the shingles area. 

My oncologist can't see me right now since I had shingles and she is pregnant so I got the other male doc, doc Beusick. He was very nice and gave me the choice to sit out another week or go with his 95% sure I was done with the shingles this week and all should be ok. Yes, I run the risk of more shingles, but I agree that it is better to keep on chemo and kick it's arse instead of more delays and a chance the cancer can come back. Amen! Treat it and deal with possible side effects later.  

I am tired.