Everyday Is A New Day

                                                                

Feeling, when someone asks me "how are you feeling?" I often times do not know what to say. Do they mean physically, mentally? What are they looking for in a response. I am one who tries to say what I think people will want to hear. Sometimes this is a negative trait of mine and only leaves me to feeling bad and hurt in the inside. I do not want people to see that I am hurting and I do not want people to "feel bad" for me. So here it is, here is how I am "feeling" 3 weeks post surgery. 

    Physcially, I am feeling really good! I am healing well, and everyday seems to get a little easier. Tasks such as taking a shower, getting out of bed, sitting in a chair, riding in a car, are all getting easier and more comfortable everyday. It still hurts to sneeze, cough, laugh, and do some things but that is to be expected. 

    Mentally, I am kind of all over the place, some days are great, others days are miserable, some days are half and half, but I think that is totally acceptable given the circumstances. I found out I had cancer, I had major surgery, then I was told that they removed all the cancer, on the same day I lost my grandfather. I am also a mom of two young children so my husband and I are trying to decide what the "best" choice is for returning to school. Is there a "best" choice? As an educator myself I know that children need that social emotional development to learn and grow as respectful citizens, and to be able to succeed as an adult. Children need to learn this at a young age. I am sure my choice will not be the same as many others but we are all trying to do what is best for our children. I know I am going to try and take extra steps to keep my children and myself safe, and healthy during these times. 

    Another thing that has been on my mind lately is not being able to drive yet or lift anything over 5 lbs. I was told yesterday that I will be on a 10 lb weight restriction for the next 6 months! I keep telling myself "Jesse I would much rather have to take some time off and take it easy than to still have cancer". Jamie and I decided that I am going to stay home focus on myself, healing, our children and try to be the best version of  myself that I can be. 

Next appointments: 

I will be going back to the plastic surgeon in about 4 weeks for a check up to make sure everything is healing well. 

I also will be traveling back to the Hillman Cancer Center in 2.5 months for scans of my chest, abdomen, and pelvis, along with blood work. (praying that nothing has returned). 

"I had cancer, cancer doesn't have me" #sarcomastrong

Life Is An Emotional Rollercoaster

We go to bed every night not knowing what the next day is going to bring us. Knowing that today was going to be an emotional day one way or another I went to bed nervous to find the results from pathology. 

What I did not expect was to wake up to a phone call telling me that my Grandfather (John Gruber Jr. "Jiggs") had passed away during the night. He was 88 years old and lived a wonderful life. There will be many times that I will have memories that remind me of the good times we shared growing up and I will be forever be grateful of the relationship that we shared.  

    After I got my mind straight we headed to the Hillman Cancer Center at 9:30. On the drive down when we were an hour into the drive I got a phone call from my Medical Oncologist saying that the pathology report had not come back yet. I explained that I was already on my way down and wanted to come in anyways to talk about future scans. At this point my emotions switched from sad to angry, frustrated, and my patience is running thin. 11:30 I got to my appointment and turns out they were able to get my pathology reports! 

     They got EVERYTHING with surgery. All of the cancer, and clear margins. This means that as of now I am cancer FREE! Now my emotions have jumped from sad, angry to relieved, happy, blessed. How can I feel these emotions all in the same day? My medical oncologist said that as of now I will not be needing chemo, or radiation that it would only make me very sick, and from the reports it is not necessary. I will be returning to the Hillman Center every 3 months for the next 2 years for CT scans of my chest, abdomen, and pelvis. After that it will go to every 6 months for many years to follow. With sarcoma cancer there is less than a 50% chance of reoccurrence , so it is critical that I stay on top of scans, because the best chance of survival is through catching it fast, and surgically removing the tumor. 

    I feel that I am a pretty lucky person I found my cancer, was proactive on getting a diagnosis and surgery, and got it removed before it over took my body. I am so happy that I will be able to move forward. I truly believe that all of the prayers, positive thoughts, energy that came my way truly helped me during this time. I know my journey with cancer is not over It will always be in the back of my mind and a worry at every scan, but I feel that I have a lot of guardian angels watching over me and I just gained another one and everything will be ok.  

1st Appointment Post Surgery

Today I went to Pittsburgh to the Plastic Surgeons office to get my drain removed. I was very lucky to only have one drain because in the beginning they had told me I possibly could have had 3. Thank goodness it was only 1. 

The type of drain that I had was drainage bulb.. it went into my lower stomach right above my pubic bone and then there was a long flex hose that then connected to a suction bulb. Lets just say this was not comfortable and I am so very thankful to have it removed and I never want to have one again. 

The ride to Pittsburgh was long and bumpy but the surgeon said everything is looking good and healing nicely. 

I have another two appointments next Wednesday, I meet with the Surgical Oncologist, and my Medical Oncologist, hopefully they will have the results from pathology by then and we can form a plan for what is to happen next. 

What we know as of now... I found out I have cancer, they removed the cancerous tumor, muscle and surrounding tissue and sent that to pathology to determine the grade, and to make sure I have clear margins (meaning no cancer in the tissue around the tumor).  I have not received the results from that yet. 

I am healing and every day gets a little better the prayers are working thank you <3 

My kids are HOME, and I couldn't be happier. These past two months have been a whirlwind of emotions for not only myself, but my family as well. Finding out I have cancer, telling my kids I have cancer and then having major surgery, coming home to an awkwardly quiet house, and trying to stay positive. 

I am so thankful for my friends and family all the cards, donations, kind words, prayers, phone calls and much more. There is no way I could go through this alone. <3 

Staying Positive

                                          

It's Tuesday already? Today is my 3rd day home! I have been able to shower, change the dressing on my incision, and sleep! 

I am still very uncomfortable no matter what position I am in, I am doing what I can to manage the pain but I know this is all in the healing process. 

The kids have been staying at Jamie's parents house since I have returned home from the hospital. We just all decided that is the best place right now until I get my pain under control. Jamie has been soo good to me, helping me with everything. I don't know how he has the patience, but I am very thankful that he does. As of right now I basically need help with everything and I am not doing well with that. I am usually the "helper" and it is hard to not be able to do anything with the house, and the kids. 

I know that what we are doing is the best for the kids and my recovery right now but I sure do miss them, they came over last night and spent a few hours with me but I am ready to have them back. 

I am hopeful that tomorrow I get to go back to PGH to see my plastic surgeon to get this drain removed. I think I will feel better when it is gone.

My follow up appointment with me Surgical Oncologist, and my Medical Oncologist is next Wednesday the 22nd. Hopefully They have a good report from pathology by then.  

Home!

I was discharged this morning! The ride home was not good every bump brought me to tears, I threw up while we were driving down 28, let’s just say I was not prepared. Finally after what felt like hours Jamie got me home. My mom brought the kids over to see me which was just what I needed and Jamie went and got my prescriptions for me. I was feeling really bad after not sleeping while at the hospital, in terrible pain, and nausea. I got myself comfortable and was able to sleep for a while. The kids went to stay at Steve and Lauries and Jamie has been so wonderful at taking care of me! We will get through this one day at a time. 

How many times a day do you use your abs?

Hey all! Today is going good! I spoke with my surgeon this morning and my plastic surgeon. Everything is looking good! He said he got all of the tumor out and we are now just waiting on Pathology to figure out the next step. I have to be very careful with what I do for a while no lifting, be careful getting in and out of bed etc.

I got my 1 IV out so now I only have 1 IV in for meds. I also got my catheter out and was able to take a shower!!!!! wooohoo, but man did it hurt BAD . I  toughed it out and I feel better now that I am clean. 

I am able to eat more regular types of food so my lunch is on its way. 

To my original question how many times a day do you use your abs? Before I had this surgery I never even thought about simple daily tasks using so much of my abs. Simple things like standing, walking, sitting in the shower, brushing my hair, literally sitting in the hospital bed typing. Coughing sucks, and sitting up, and getting out of bed. I am glad to be in a hospital bed to have help sitting up. Breathing even hurts. but I am managing the pain and hopefully I'll be able to continue to manage it. 

Thanks again for all the love and support <3

Night 1

Well hey everyone it’s 4:12 in the morning and I can’t sleep, I was sleeping then they had to draw blood so they needed to wake me and turn on the lights I had a good 1 hour nap. 

My nurse is doing a pretty good job at managing my pain! We haven’t left it get too bad, 

I am typically a belly/ side sleeper so this whole sleeping on my back sucks but I’ll figure it out. 
When Jamie left to go home I thought I literally think this is the first time I have stayed somewhere completely by myself no family no one in 10 years. I miss my children so much but they are making me be strong and push through. 
Thanks for all the love and support guys I’m overwhelmed with all the kindness in a good way. 

Please keep praying it is definitely working, 

Love you all

Post Surgery Update

I arrived at UPMC Montefiore at 8:30am. They got me registered and took me back, I changed into my hospital gown got my IV, blood work, some other shots and meds and got ready to go. That was scary but every person, every DR, CRNA, Residents, Nurses, CNAs have all been WONDERFUL . 

Form Montefiore they wheeled me over on my bed through a bunch of hallways to Presby. This is where I had the surgery done. 

GREAT NEWS: they did not have to remove as much as they originally thought they removed abdominal muscle, tissue,  and the cancerous tumor (my sarcoma). I only have one drain, a catheter, 2 IVs and a heart monitor that I am dealing with now. Oh and these legs things that prevent blood clotting.  I have not spoke to the surgeon yet but he has spoken to Jamie. He told Jamie that the got clear margins and were waiting on pathology for the grading of the cancer. 

Jamie is doing great by the way and I am so happy at least he can be with me I could not do this alone.

I am in a lot of pain, but the nurses are doing an excellent job at making it tolerable. 

I will update tomorrow back to resting <3

Pre Surgery

Jamie and I went to Pittsburgh Thursday night to be there first thing in the morning today. 

Thursday I kept myself super busy, packing the kids, running errands, cleaning. I felt as though I was keeping it together pretty well! Cece was upset because she wanted to be able to sit with mommy in the hospital, but I told her we could facetime and she was OK with that. Towards the end of the day my nerves were completely shot when the kids left I got pretty emotional as any mother would. 

We arrived at PGH around 7:00 and checked in to our hotel found something to eat (which was not an easy task) and just tried to enjoy our evening together.  

Surgery 7/10/20

Surgery Date is Friday July 10th! 

I am the first surgery of the day so I will be there at 5 am that morning. 

This is a major surgery they will be going in and removing the tumor along with muscle wall that the tumor is attached to, all surrounding connective tissue, anything that the tumor is touching. Then a plastic surgeon will have to cut my oblique muscles on the sides to be able to slide the remaining muscles together to close up the surgery. They are unsure of how long the surgery will take or what all will be involved. 

I will then have approximately a four day stay at the hospital, give or take depending on how the surgery goes, lets hope for less right?! 

I will have 3 drains in my abdomen that I will return home with. 

I was told I will have approximately a 6 week recovery at home with a lifting restriction of nothing heavier than a gallon of milk. Hmm I wonder how that is going to work with 2 small children?.. 

We are hoping for clear margins during the tissue removal of the surgery meaning they have been able to remove all the cancer.  

Thank you for all your love and support through my journey so far, I am continuing to fight and stay positive <3

Latest CT and Medical Oncologist Report

June 24th I had an appointment at UPMC Presby to meet my Surgical Oncologist. I really liked my Surgical Oncologist he has a vast amount of knowledge in Sarcoma cancer and removal of it. He is the chief of surgical oncology at UPMC Presby.  During that appointment I had a CT of my chest done. In most cases when Sarcomas spread the first place that it will spread is to the lungs. My CT showed some very very small nodules on my lobes that are too small to biopsy. The plan for that is to do routine CT scans to monitor any changes in size, or anything else. 

I met my Medical Oncologist who specializes in Sarcoma and she was wonderful. Our plan as of now is to do the surgery, they will go over the tumor and grade all sections of that and then decide with a team of doctors if radiation therapy is needed. 

I will have routine scans every 3 months for the next 2 years. 

Soft Tissue Sarcoma (Facts)

What is Sarcoma Cancer? 

Good question! I had the same when I was diagnosed, and I still am not an expert. 

I have what is called Fibromyxoid Sarcoma. It is a type of soft tissue sarcoma that can be found anywhere in the body that you have soft fibrous connective tissue. Mine is located in the lower abdomen below my belly button to the left. Often it is found in the arm, leg, chest, or back, and less often in the abdomen.

Facts:

• There are two main types of Sarcoma Cancer. There is bone sarcoma, and Soft tissue (this is what I have) 
• Then there is OVER 50  different types of soft tissue sarcomas. 
• Less than 1% of adult cancers are Sarcoma. 
• There are roughly 16,000 Sarcomas diagnosed in a year, compared to about 200,000 lung cancers diagnosed. 
• There are about 6,000 Sarcoma surgeries done in a YEAR in the U.S. (think about the number of surgeries done a day and compare that number) not very many 
• (These statistics were given to me from my Oncologists). 
• For my type of Cancer Surgery is the best treatment. The type of sarcoma that I have does not respond well to Chemo, so more than likely I will not be having to have chemo treatments (fingers crossed). We will just keep praying that the surgery works! 
• This type of Cancer does have a high return rate meaning that it can and often does return in 2-3 years and also later in life. 
• This type of cancer typically spreads through the blood vessels, and not the lymphatic system. 

Support System

First I want to say THANK YOU to every one who has reached out and shown encouragement, love, support, donations, hugs, and so much more. I will never have enough words to say thank you to everyone. 

My Medical Oncologist asked me do you have a good support system? I said oh yes absolutely. 

My husband who has been holding my hand every step of the way.

My kids who keep my mind occupied, give me millions of hugs and kisses, and make me smile everyday. 

My parents who help watch the kids, take me to appointments, distract me ;) <3 J.P. and Bridget for listening to me, hanging out and helping with the kids. 

I have my family Aunts, Uncles, Cousin, Grandparents, who will do everything to help me. I love you ALL

My Cousin Kendall set up a Gofund me to raise money to help cover the expenses of surgery, possible radiation, scans, traveling, hotel stays, and much much more. https://www.gofundme.com/profile/jesse-hughes-ghmej  <3<3<3 

My In-Laws Steve and Laurie, Brenna and Curtis for keeping the kids and supporting us as much as possible <3

My life long friends created T-shirts for purchase that say "Stronger than Sarcoma" on the front and JesseMae Strong on the back I love them, 

And all my other friends, acquaintances, and more reaching out to just say that they are thinking of me, donating to my fundraising, and following my story really helps. 

Pre Diagnosis

Many of you have asked the question how did you realize you had cancer? So here is the story of how I came to find out the dreaded news, you have cancer. 

        Rewind about 3 months ago, it was in April sometime I felt this lump in my lower abdomen, below my belly button. I thought to myself well this is a weird lump, I wonder if this was from having Case ( he was a pretty big baby). So I went on with my day and didn't think too much more about it. Then it kept coming back to my mind so I thought maybe I should ask some family members what they think. I called my cousin Kendall  (who is more like a sister and is like my google when it comes to anything medical) and she said could you have Bridget feel it and see what she thinks? So I went to Bridget ( my brothers fiance) a little while later and said I have a weird lump is this normal. She felt it and said "I think you should call your doctor like now, or first thing in the morning". So I called my PCP the next morning and then the tests began. 

    My PCP (who I think is excellent by the way) did not think it was much to be concerned about at the beginning, she thought it could just be some fatty tissue, or who knows, definitely did not think cancer. She sent me for a CT scan anyways just to make sure. I asked to do all of my tests and procedures at UPMC. 

May 12th I went in for my CT scan, yes I had to drink the contrast and wait an hour. The same day I also had blood work which my CBC did not show anything out of the ordinary no red flag from there. The CT results came back with a few odd findings that they wanted to do an ultra sound (the "mass" was still unidentifiable). I am glad I went in for the ultra sound instead of just saying "just remove it, not knowing at the time but with Sarcoma Cancer you do not want to just go cutting into it without the knowledge". 

May 19th I went in for the ultrasound and man did that hurt. I have had many ultra sounds with both pregnancies and none of them have hurt like this did when they pressed down on the tumor I about jumped off the table. The ultra sound results came back and the General Surgeon who I was now referred to looked at it and decided he wanted to get a biopsy before removal off the "unknown mass". 

At this point I was terrified and did not know what to expect so I paused all testing for a week and skipped off to my Aunts beach house (Thank you Mim <3 ) to spend a much needed week with Kendall and her family. 

June 4th I went to UPMC for an ultrasound guided biopsy. (For those of you who do not know what that is .. well they use the ultra sound machine to guide the radiologist as they stick a big needle into the mass and excerpt samples of tissue to send to pathology). 

Two long dragging weeks went by, waiting for the result. I found out June 16th, 2020. 

Three Big Words... That No One Wants To Hear

June 16th 2020, I will never forget this this day in my life. Typically I try to remember Birthdays, Anniversaries, the day I graduated College, The year I graduated High School, you know all happy times. I never remember dates when people pass away, but I think I will always remember the day that I found out I have Cancer. 

    It was in the morning and I was in my room putting laundry away, the kids were downstairs watching their morning cartoons, and my husband was at work. My phone rang and it was the general surgeon. I said "hello" and he said Mrs. Hughes Hi this is Dr.... your biopsy results came back and the mass is a sarcoma. I had no clue what a sarcoma was I have never heard of sarcoma in my life. So I asked him were they able to tell if the tissue was benign or malignant? He said a sarcoma is a type of cancerous tumor, but it looks like the tissue that they collected is low grade. 

From then on I do not remember a word that was said to me I went numb.....

I was home alone with my 6 year old and 4 year old, finding out I have cancer.