It's back

 We have new updates to share. Unfortunately my cancer has returned. It is in my brain now. I have over 40 tumors that are in various areas of my brain. For a couple months now I've been having visual disturbances and mild headaches. I didn't think much of them and had an appointment scheduled to see my eye doctor. Two weeks ago I had my regular follow up oncology appointment and mentioned them to him. He suggested I get an MRI of my brain just to make sure. Almost two weeks ago I had the MRI and got the results the next day which was a Friday. It wasn't what we were expecting... My Dr isn't in the office on Fridays so we waited until Monday to see what the plan was. He immediately had me go to the radiation oncologist to get set up for radiation the next day. I'm almost done with 10 whole brain radiation treatments. I go every day and let inside a machine that looks like a CT scan for about 20 minutes for each treatment. I find it is a good opportunity to pray and thank God for my many blessings. Monday will be my last radiation treatment and I will meet with my oncologist again Monday as well to find out what exactly we will do next. I know it will be chemotherapy but don't know the exact details. He was waiting for my update scans of the rest of my body to make sure it hasn't come back in the rest of my body. Which it hasn't! The immunotherapy I've been doing has been working. Unfortunately, it doesn't go through the blood brain barrier. The oncologist said 1 in 5 patients with HER2 positive breast cancer have it travel to their brain. They were just hoping it wouldn't happen for me. They are all extremely optimistic and said things should go well with treatments, I just have another mountain to climb right now. 

I know people will ask what we need. So I thought I'd include a list.

1. Prayers! Any and all prayers. They help so much. We felt everyone's prayers the first go around and also feel the prayers from those we've told already. Thank you so much for prayers on behalf of me and my family. 

2. A nice juicer. I am going to try some different eating along with the chemo and radiation. One thing that is recommended is juicing to get more vitamins and nutrients. I'm hopeful it will help me have more energy. We've had a juicer before but it didn't produce much juice... The pulp catcher would be full before there was enough juice to drink. I've been looking for a good juicer for a good price, but if anyone has one sitting around they no longer want we'd love to have it. 

3. Joe works as an agent for New York Life. It is actually the perfect job while going through this because he is able to take me to appointments as necessary and make his own schedule. If you or anyone you know needs life insurance (term or whole life), annuities, long term care insurance, etc. Please reach out to him! He does an amazing job and loves his clients. He is easy to work with. This is how he earns money for our family. He is also planning on helping with Medicare soon (he just needs to finish licensing for that) we'll let you all know when he's ready to start helping clients with that. He can discuss all the Medicare options to see if you or a loved one are getting the best Medicare policy. 

These are the main things I can think of. We love you all and thank you for all the love that has been shown to our family over the years. I will try to keep everyone updated as things change.

Miracles

 The last little bit we have pretty much been back to normal life.  I go in every 3 weeks for immunotherapy which makes me tired for a day or two and then I'm back to normal.  It has been awesome to feel so good after not feeling great for several months.  A week ago I had another echocardiogram and PET/CT scan. This last week at my oncology appointment my doctor went over my results.  Everything looked great on my echo still...they are keeping an eye on my heart since one of the immunotherapy medicines causes heart problems in 5% of people taking it. My PET/CT scan also showed great results.  During a PET/CT scan they give you an injection of sugar molecules attached to radioactive material.  Cancer loves sugar so the sugar molecules will go to the cancer cells along with the radioactive material that they can see with the PET/CT scan.  My PET/CT scan didn't show any cancer cells with the radioactive material.  They said it is considered a complete response and I currently don't have any cancer! We are so excited for this news and feel extremely blessed.  I have only been doing treatments for 5 months and to have a complete response in that time is truly a miracle.  The vertebrae in my spine are still healing from the cancer so I still have some pain with that but it doesn't hurt as much as it did last year before we found out about the cancer. The doctor said that we will continue to do the immunotherapy every 3 weeks to try to prevent the cancer from coming back.  We will also continue to do echocardiograms and PET/CT scans every 3 months to keep an eye on everything.  They will never say I am cured because once you have Stage 4 cancer you are considered to always have cancer.  Thank you for all your prayers in my behalf and my families behalf this last 6 months since I was diagnosed. They have truly been felt. I also appreciate everyone that has checked up on us to see how we are doing and for all the service that has been done to help us.  We have been awed at the love that has been shown to us.  

Gallbladder and immunotherapy

 Two weeks ago I went in for immunotherapy but was told I had to wait a week.  I had been having diarrhea for a week along with some stomach cramps and throwing up.  Nobody else had gotten sick in my family and it all seemed related to eating food so I wasn't worried about being contagious. They said that you can lose a lot of electrolytes through diarrhea so that is why they were waiting a week to do immunotherapy.  They drew blood and gave me fluids.  The next morning I went back in for more fluids and found out that my potassium was low so they gave me more fluids with potassium which takes 3 hours.  It was a long day. 

Last week I went in for immunotherapy and had had a much better week with no diarrhea so was able to receive my immunotherapy medicine.  It was Valentine's day so Joe and I celebrated by going to Chick-Fil-A for lunch.  It was really yummy! Then I went home and slept the afternoon away.  I am allergic to one of the immunotherapy medicines so they give me Benadryl which makes me very sleepy.  

Later that evening I got up to make dinner and my stomach wasn't feeling good again and I was having diarrhea again.  I thought it was from the immunotherapy because the doctor had decided it was just one of the side effects of the immunotherapy. Diarrhea and stomach upset can happen from the medicines, it just isn't very common. As the evening went on, I tried taking a bath to help because the pain in my stomach was getting worse and worse.  I finally got out because it wasn't helping at all.  I then took some Tylenol, anti nausea meds and gas x because I thought maybe one of them would help.  After an hour I finally told Joe to take me to the ER because I was pretty sure it was my gallbladder that was causing the pain and stomach upset.  

By this point it was about 11 pm.  We went to the ER and luckily they weren't busy at all. They were able to get me back to a room almost immediately and drew blood and administered pain meds pretty quickly.  (It didn't feel super quick at the time, but it really was rather fast) I finally started feeling a little better. They did an ultrasound and discovered the problem was my gallbladder.  I've known that I had gallstones for several years.  Apparently the gallstones had gotten pretty big and were the size of kidney beans.  (I didn't have my gallbladder out earlier because it wasn't causing me pain and hadn't for several years, we were following it with my GI doctor and keeping an eye on it) They called the on call surgeon and decided to admit me into the hospital and wait until the next morning to decide if we'd be having surgery then or calling and scheduling surgery for a later date. They were concerned because of my cancer and wanted to keep a closer eye on me. 

They took us to a room around 12:30 and started getting us checked in.  Shortly after getting to my room the pain started coming back.  They said to let them know if I was more than a 5 on the pain scale and they would see what they could do.  Around 2:30 am they were finally done asking all the questions for admitting me and I was in quite a bit of pain.  They were able to give me a little more pain meds and started me on an antibiotic and an antifungal.  The pain meds only worked for about an hour again. The rest of the night was mostly me trying to ignore the pain and not sleeping. They had attached some socks that are connected to a machine that inflates one at a time every couple seconds.  They prevent blood clots. They also make it really hard to sleep when you are already in pain and struggling to fall asleep.  The next morning the surgeon came in and said that they would be doing surgery that day.  He had other gallbladder surgeries already scheduled that morning and he would fit me in when he could.  I spent the entire day trying to do visualization and singing songs in my head to distract me from the pain.  They couldn't give me much more pain medicine and it didn't matter anyway because nothing was helping.  They came in around 10 am and told me that surgery was scheduled for 1pm.  At 1 pm they came in and said there was one person in front of me and that they needed to give me a dye and we'd have to wait an hour after that.  At around 2:30 they finally came in to get me and I got into the surgery room at 3pm.  When I woke up around 6 pm I felt much better.  As the pain meds wore off from surgery there was some surgery pain but it felt much better than the pain I'd been in the entire day.  They had me stay another night at the hospital because my gallbladder was pretty bad when they removed it.  It was gangrenous and dead. It was very enlarged and the gallbladder wall was very thick.  The doctor said the pain meds hadn't worked before the surgery because the gallbladder was so inflamed that the vein that goes to it couldn't give it the pain meds I was receiving.  

We're pretty sure that the gallbladder turned so bad within the three weeks from my PET/CT Scan. In the PET scan it showed gallstones but no thickening or inflammation. We're also pretty sure that the diarrhea and stomach upset I'd had for the few weeks prior to surgery was all from the gallbladder and not actually from my immunotherapy.  I'm so thankful that it is out now and that I'm starting to feel better. I'm also thankful for the help we received from friends this last week after surgery.  

Great News

 I did a follow up PET/CT scan the end of January.  It felt like we waited forever to get the results but it was really just the weekend.  On Tuesday we went in and visited my oncologist and received great news.  The cancer has responded really well to the treatment.  The two tumors in my breast are gone. The tumor in my lymph node in my armpit is gone. The tumors in lymph nodes around my lungs are gone. The tumors in my lungs are gone.  Tumors on most of my bones are gone.  I do still have a tumor in a lymph node by my neck and a tumor on the L4 vertebrae on my spine.  The other tumors on my spine are gone and are regrowing bone. We were so surprised and happy that so many tumors are gone so fast.  It truly is a miracle. The oncologist said for the next three months we are just going to do immunotherapy since things are looking so good and the chemo makes me so anemic.  We will do another scan in three months and then decide at that point what the next step will be.  He said if we need to do chemo again at that point we will do a different chemo that has less side effects. We are so grateful for this miracle in our life and pray that treatments will continue to work well. 

New Hair Do

My hair is falling out! A couple weeks before Christmas my hair started coming out in clumps.  Anytime I'd put my hand through my hair there would be a chunk of hair, and brushing my hair produced an entire brush full after each stroke.  I decided it was time to go with shorter hair so it wouldn't be so noticeable. We waited until a couple days after Christmas and then Joe shaved my head.  We didn't shave it all the way to my scalp, we left about a 1/2 inch.  It feels weird having short hair.  I've had medium to long hair most of my life.  One surprising thing once we shaved my head was that I still had quite a bit of hair.  It didn't even look like I'd lost any. I've continued to lose hair since then and it is getting quite a bit thinner. 

Otherwise we've been doing chemo every Tuesday since the end of November.  Last week when I went in my hemoglobin was too low so they didn't do chemo or my immunotherapy that we were supposed to do.  This week when I went in my hemoglobin hadn't come up enough so they decided to just do the immunotherapy and not do chemo until the next cycle in 3 weeks.  I am going to have a follow up PET/CT Scan then end of this month and then we will discuss treatment further after the doctor looks at the results of that scan.  There is a chance we won't do chemo for a while if everything looks good on the scan.  

Again we want to say thank you so much to everyone that has prayed for our family, brought us meals, sent us gifts to help with Christmas, sent cards, or money.  We really appreciate all the love we have felt from everyone! Thank you! and we love you all!

Chemo

 I'm not great at updating.  I started chemo the week after Thanksgiving.  I also am receiving immunotherapy drugs that help the cancer fight itself.  I will only receive the immunotherapy every 3rd week and the chemotherapy I go in weekly for.  The first week wasn't too bad, but took forever.  They are looking for allergic reactions so they run them slower.  I did have a reaction to one of the immunotherapy drugs but they then gave me Benadryl and flushed the line.  I was just having a harder time breathing but my oxygen levels never dipped. It just felt like I was breathing through a straw.   Once the reaction had slowed down they ran the rest of the medicine and I didn't have any further problems with it. The first day took from 9 am - 5 pm because of the reaction.  My aunt came with me to spend the day and it was fun chatting when I wasn't sleeping.  

The 2nd time I went in for chemo I had caught one of my kids colds and didn't feel great.  My white blood cells were a low and they decided to hold off so my body could fight whatever it was I had.  They gave me fluids and they also had me visit my primary care Dr. so we could rule out viral sicknesses like the flu and COVID.  It ended up not being either of those so they had me start antibiotics which helped a lot.  I had an ear infection by the time I went to my primary care Dr that afternoon so I was glad that we were able to start the antibiotics because it didn't feel great.  When I was at my oncologist my ear didn't even hurt. 

This week was supposed to be my 3rd week of chemo but ended up being my 2nd since we skipped last week.  On Tuesday, when I received the chemo I didn't feel bad at all.  Wednesday also wasn't so bad.  Thursday though I didn't feel great at all.  It felt kind of like morning sickness.  I go in every Friday to receive fluids and that helped a lot.  I definitely feel a lot better now than I did then.  The chemo also made everything taste like medicine without flavoring...maybe like if you chewed up a Tylenol that was supposed to be swallowed.  I was very happy when food started tasting normal today.  

Overall everything has been great.  We are very thankful for everyone that has helped us from giving gifts, cleaning and folding laundry, helping go through clothes and organize, reading to our children, driving kids to piano, dance, and work,  taking me to chemo, checking in with a call or a text and everything else everyone has helped with.  We feel very loved and appreciate all that everyone has done.  I feel like we can never say thank you enough. Don't hesitate to ask questions.  I don't mind answering them at all.  

Port Placement & Brain MRI

 Last Thursday I had my port placed for easier access for chemotherapy.  The port is a plastic device that was placed under my skin right up by my collar bone on the right side.  I had to be there bright and early at 6 am. Everything went well with check-in and the surgery.  They told me I'd probably wake up right out of the surgery but it took me about an hour. After the port placement we went over for my radiation appointment that was supposed to be at 7:30.  We didn't get there until 11:00 but they were great at working us in since we had had surgery. 

I went home afterward and spent most of the rest of the day slipping in and out of sleep in my bedroom.  We told the kids to work together and leave me alone so I could rest.  They actually did a really great job. It has taken me almost the entire week to feel better.  There was a lot of bruising to other muscles in my shoulder and chest.  It feels kind of weird knowing that there is something under my skin all the time.  I'm hoping that I just get so used to it that I don't notice at all. 

Monday, I had 2 MRI's done.  One was my thoracic spine because the lumbar MRI showed that the tumors on my spine went up into my thoracic spine.  Luckily the only thoracic vertebrae affected are the same ones they could see on the lumbar MRI.  It made us feel very happy to find that out.  The 2nd MRI was of my brain.  We just wanted to verify that the cancer hadn't moved to my brain yet.  I have never been so happy to find out that my brain is "unremarkable" :) we were so happy to have a 2nd bit of good news because up until this point it felt like everything came back negative.  

I just finished my 10 days of radiation on my spine today.  Next week on Tuesday I start chemotherapy.  I'm nervous but it also helps me feel like we are doing something to take care of and kick the cancer out. 

Radiation

 When we found out that he cancer had metastasized to my spine, the doctors decided I needed to have radiation to shrink the tumors on my spine.  They are pressing against my spinal cord and they don't want it to cause paralysis.  I also am waiting on my port being placed tomorrow and they can't start chemo until after that so they wanted to start something they can work on in the meantime. I am having 10 days of radiation.  They originally said it wouldn't cause any side effects. After my first appointment, they realized that it was a large area they were treating and would probably cause nausea and vomiting, which it has.  It also makes me extremely tired, but I have learned that naps and nausea meds are my friends. :) I just finished my 5th treatment today so I am over half way done! 

Tomorrow I get my port placed and then after Thanksgiving we will start chemotherapy.  It is planned on going on for quite a long time until my body can't handle it anymore or they need to try a new chemotherapy drug.  They are also planning on doing immunotherapy drugs with the chemo which will help fight my specific type of breast cancer.  We are extremely hopeful that all this will work and shrink and even kill the tumors. (doctors haven't said they can be killed completely, but that is my hope and prayer).

I do have another MRI scheduled for Monday as well.  The first MRI was just my lumbar spine.  This one is supposed to be Thoracic spine and Brain. We just want to make sure it hasn't spread elsewhere that they didn't see before.  The PET scan they originally did showed a tumor on my L4 vertebra but when they did the MRI it showed tumors from L5 to T 10 which was as high as they could see on that MRI.  They weren't expecting that because the PET scan is typically a better scan.  That is why we are doing further scans to see if it goes farther then we saw.  I haven't had a ton of brain symptoms of cancer but have had headaches so that is why we are doing that scan to rule anything out.    

Breast Cancer

 Over the last month our life has been turned upside down.  We got the dreaded diagnosis nobody every sees coming.  I have breast cancer. It is stage 4 metastatic, invasive ductal cancer. It has spread to my bones and my lungs. It is also estrogen dominant, progesterone dominant and HER2 +.  All of that just means it aggressive, but along with that it means there are cool ways they can use treatments to allow the cancer to attack itself.  

    Everyone always asks how it happened, how we found out.  I can go way back and say that when I was pregnant with Ben I had a small lump in my right breast but 2 gynecologists and a dermatologist in the last 6 years have all said it was nothing.  I have large breasts and it is normal for them to be lumpy.  Now we know that isn't the case as the largest lump has grown from an eraser head to about 3 cm. (apparently the size of a bouncy ball?) This last couple years I have been tired, but I have 7 kids so it was to be expected especially since the youngest is 2.  I also started having breast pain earlier this year, but if you look up breast cancer it says most breast cancer doesn't hurt so I didn't think anything of it. In the past year I've also had a lot of back pain, but I figured it was from not being in as good shape as I could be. I started going to a Physical Therapist in May to see if that could help since we had a family reunion planned for the summer and we were also going to travel to Pennsylvania and New York after the family reunion for a wedding and much needed family visiting.  The plan was to drive the entire way in two separate cars since we don't have a vehicle that fits everyone.  I really needed my back pain to be bearable so we could go.  The Physical Therapy helped a lot but didn't make everything 100% better.  

Our family went to Colorado in July for that family reunion.  While there we went to Pike's Peak which is 14,115 feet above sea level.  It is beautiful and tall, but it also made me feel like I couldn't breath great and I never really recovered after that.  Anytime I would go walking, especially up any small incline I would be short of breath.  The last day we were in Colorado as I was packing and preparing to head to Ohio, I was really struggling with a lot of pain in my right side of the chest and breathing.  I asked my mom who is a nurse practitioner about it and she said it could possibly be costochondritis and to take Advil to see if it helped.  It did! I was so happy and figured we'd figured out our problem. She did say that if it didn't resolve in a couple weeks to check with a doctor especially since I was having breast pain with it too. We finished our family vacation back east and had a great time visiting family and the Advil seemed to help any pain I was having so I figured it really was costochondritis.  My mom had mentioned my Physical Therapist might have exercises to help so I brought it up with him at my 1st appointment after we got back.  He had exercises that helped so I thought we were doing great other than the cough that had cropped up even though I hadn't been sick.  I thought I must have developed some asthma because of the high elevation we'd been at in Colorado. 

Fast forward a month  to end of August and I was having some worsening back pain again.  The physical therapist mentioned getting an MRI to see if I had a bulging disc but I declined because I told him I didn't want to do surgery since back surgery doesn't have a great success rate and he assured me that my exercises could fix a bulging disc. I can say that the exercises have helped a lot so when I found out about the metastases to my spine I was surprised... 

In late August, early September I started noticing swelling in my breast. I called my gynecologist and got in for an appointment so I could get a mammogram. I should have had one last year for my 40th birthday but various things got in the way... When I saw her she said she didn't feel any lumps and figured that the swelling was from an unsupportive bra. It eased my fears and I didn't worry too much when I called to schedule my mammogram and they didn't have any appointments available until October 6th. 

On October 6th, I went in for my scheduled mammogram.  When I got there they asked if I felt any lumps.  I told them that I did, but the doctors didn't.  They told me they couldn't see me that day and I needed to come back the next day when the radiologist was there to do a more in depth mammogram and ultrasound.  They said even if they did it that day that they radiologist wasn't going to be in until the next day so this was a better option for me to get results more quickly.  I went back October 7th and they did the mammogram and then sent me to do an ultrasound as well.  After the ultrasound, the tech said she was going to talk with the radiologist and come right back.  The radiologist ended up coming in and asked how Monday sounded for a biopsy. I was scared at this point.  Things has drastically changed from the normal, everything is fine line I'd been receiving for so long.

Monday morning we went in and they biopsied two lumps in my right breast and one in my armpit.  All came back as positive for breast cancer and thankfully they were all the same type of breast cancer.  It took us until Friday, October 14th to get the results which felt like an eternity.  It was one of the longest weeks of my life.

Since that appointment we have met with a radiation doctor, oncologist, and surgeon.  They all had one plan of action until we did our PET Scan and MRI which showed that the cancer had metastasized and then that changed our course of action. 

We are so thankful to everyone and your thoughts and prayers.  I testify that prayers are truly felt and have lifted us up.  It isn't easy and I don't think it will always be but right now we (I) have a lot of peace.  We are also thankful for all the help we have received from friends, family and ward members.  The outpouring of love from everyone has been amazing.  I will post more in further posts since this one is already long and all over the place :) 

More Blessings

 The month of December we felt very loved and blessed. We had 3 separate occasions where there was a knock on the door and somebody had left money in an envelope in some way or another. Another 3 times there were presents left: Once it was clothes for the kids, another time was books for the kids, and the third time it was a goodie basket with things for a movie night and gift cards for everyone in the family.  We felt overwhelmed with gratitude for the love shown to our family. As Christmas came and went we still wondered how everything would work out with Joe's work.  We continued to pray daily to ask for the Lord's help. We felt comfort and peace that everything would work out. On December 30th Joe still hadn't made the money that he needed to. One of the trainers at his work asked if he had contacted a specific family. He said no he hadn't but he would call them.  He called this family and they said they were good to meet the next day. He went to that appointment with hope because if they accepted what he was proposing he would be able to make the $9200 that he needed to in order to keep his job, but he didn't know if they would accept it.  When he got there they did say they were willing to accept it so he was able to make the money that he needed and he was able to keep his job with New York Life. We were amazed at how the Lord blessed us and answered our prayers.  We were also amazed at how everything came together.  It was a huge trial of our faith.  We knew what we were doing was what the Lord wanted us to do and we knew that he knew how it would happen but we didn't know the end during the trial. It definitely feels better being on this side of that trial.  This month since hasn't been a breeze when it comes to work for Joe, but it has definitely felt better having the money that we need to cover our bills. We have been able to get our cars fixed and pay some medical debt.  We are so thankful to our Heavenly Father for his hand in our lives.