Keep the Faith

HEALTH UPDATE: I made my own red cells! No blood transfusion! My counts look improved and my friends here at UW Hospital are working on my discharge! I will continue with antibiotics at home and will also start some sort of iron treatment.

Ramblings:

Baby! I’m coming home! It’s only been a few days but oh my, I’m so happy to be going home today. I feel so strongly that it is because of all of you, my friends and family, that I have been blessed with all the good news lately. I love and appreciate all of your notes and replies. The power of positive thinking is working! I thank you all!

HEALTH UPDATE: First Chemo and home maintenance complete. Felt better than fabulous days 1-3. Symptoms started to appear day 4. Dizzy, tummy cramps, tired. Symptoms worsen a bit as each day passes but still not awful. God blessed me with symptoms in the morning and opened up a comfortable afternoon on Christmas day so I could enjoy a most special time with my family. Curse of the good food and no rest followed the day after Christmas and I was in bed just about all day. I rebounded the next day followed by a fever of 102.4 the day after that. Let me just say, the folks at UW do not mess around with fevers when you are on chemo. I was advised to go to the ER (after hours) and they went to work. First they needed to find the source. Infection? Lots of blood went to the lab. Flu swabs up the nose. Poop sample. Blood from port. Blood from a different arm too. Urine sample. Chest X-Ray. The works! Just waiting for the blood cultures to come back. Everything else is in and negative! My white cells are CRUSHING IT. My red cells, not so much. I’ve been anemic for some time now since this all started so not a total surprise. Unless I build a bunch back up tonight, looks like I will be getting my first blood transfusion tomorrow. Thanks to all who donate blood! What an incredible gift you give! I was admitted to UW Hospital Friday night and am still a resident this evening. They just would like to observe to make sure the unknown source of the fever doesn’t show up again. The fever came down Friday night with Tylenol and I haven’t had another fever since. I feel pretty good except for the random tummy cramps that are very painful. We’ve got a plan going to keep it under control and it’s working pretty well. I’m not sure what the exact plan is for tomorrow but I’m thinking I’ll get a blood transfusion and hopefully go home. The mystery remains. Where did the fever come from? I have my own ideas. My primary doctor tested me for most of these same things when I reported to her in March I was constantly getting a low grade fever. She could not find a source either. Is it from the tumor monster? I think that bitch might be the cause. We have a few more tests to check out but until then, my bet is on the tumor monster.

Ramblings……

My head is going to explode. I have so much to ramble about. Where do I start? I’m going to start with things that I have learned in recent weeks. I’ve learned that it’s possible for me to become speechless. My friends at Restaino & Associates, where I am proud to hang my real estate license, pooled together a handsome envelope as a gift to my family to do something special for Christmas with Willow. Instead of participating in their annual white elephant festivities they gave their gifts of money to us! Many, many thanks!

Willow’s friends at school put together a Christmas surprise that was just unbelievable! Not only did they send Cinderella to our home to surprise Willow, they sent her with huge bags of gifts for us! All of us! How do I possibly show the overwhelming thankfulness in my heart? It was a day beyond our wildest dreams. We love our St. Maria Goretti family so much. Thank you for making my little girl smile like never before. Yes, I’m crying right now. So many gifts, cards, letters, calls, texts. It’s humbling and so very much appreciated. I thank you so very much friends and family!

I’ve learned that my emotions have a clear pattern. When I’m feeling good, I am happy, strong, positive, smiling. That is the part of my personality you see most often as I write this blog. I’ve learned that if I’m not feeling good or in pain, the fearless attitude is gone in a heartbeat. A sick day turns dark. I can’t stop crying. I’m paralyzed with worry. I can’t stand the pain, both in my body and my heart. I dig deep. I pray to God that he can carry me out of this dark day. The pain subsides and I’m back to myself. C’mon Willow! Show me your new lego creation! I love it! Thankfully, the bright moments are far exceeding the dark moments. I pray for this to continue. Please Lord, keep me out of the darkness, Amen.

I’ve learned that I’ve been preparing myself for this situation most of my adult life. I am not shocked about my diagnosis and have a strange sense of acceptance. I am a self diagnosed hypochondriac. I think many people feel this way to some degree. For me, every bump, bruise, headache, illness, skin lesion…you name it…must have the worst possible outcome. I thought I had a tumor in my back for 5 years. I was scared to death. Too scared to get an x-ray. I talked about my fears to many but I don’t think I ever shared how scared I actually was so many times. Time after time it was negative. It was not what I thought it was. I was healthy. I didn’t have a tumor. I was fine! I finally started believing I was healthy. I gave up on thinking something must be wrong. It just wasn’t! So when I heard the news of the tumor monster, I was surprised for a moment and suddenly it felt like no surprise at all.

I’ve learned that when I’m stuck at the hospital for observation and I’m by myself on a rainy Saturday night, I can only go the feisty route for my closing thoughts. It’s been an emotional journey so far. I’m not used to sitting around and waiting. I’m not used to being by myself. I miss my husband. I miss my baby girl. I miss my Mom. I miss my family and my friends. I miss my normal life. I hate you tumor monster. I will not let you win.

HEALTH UPDATE: First round of chemo is complete and went well. Just a few maintenance items to take care of the next few days including injections at home to increase white blood cells.

Ramblings…

Happy Holidays! The past few days have been great. Yesterday I felt better than I’ve felt in months. There were a few tummy cramps but energy was great and I got a lot done. Even went to our lovely holiday party with the hubs to celebrate with our wonderful Real Estate family. It’s a great time to see everyone and our broker Ron really knows how to throw a party! Tom and I enjoyed a very special slow dance and it felt so good. I woke today with bed spins which would be completely normal for the day after the Restaino & Associates holiday party but this year I drank 2 cups of coffee last night. LOL It seems to be subsiding so I should be good.

Thoughts are drifting away from the challenges I face and heading into the magical preparations for Christmas. The look on sweet Willow’s face means everything in the world to me. It will be a special Christmas for us. The world looks a little different but it is absolutely beautiful and every minute is cherished! Besides my family and friends, my heart is most warm with the thought of meaning of the season, the birth of Jesus Christ!

Wishing you all a blessed holiday season filled with love, laughter, friends, family and all the best! Thank you all for your love and support. I could not do this without you!!

HEALTH UPDATE: I am no longer a chemo virgin. The last bag of super powers are dripping into my veins at this very moment. I’ll leave with a pump with an additional 46 hours of drugs to be administered at home, 5 injections at home and a list of other goodies to take should I experience side affects. So far, so good. Besides sweating from wearing the warmest sweater I own, I feel great!

Chemo Day Ramblings:

I thought I would add a special addition piece to my blog for chemo days. Chemo Day Ramblings!

I’ve lived my life at full throttle for years. Run, run and run faster. I am beginning to think I literally did not take time to think! Now that I’ve settled down, all I do is think! Under my current circumstances, it’s hard not to think about the situation I’m in. It’s such a wide range of thoughts!

Worrisome thoughts: Duh, do I really need to state the obvious? I’ve always been pretty optimistic, but I’m also a realist. I will fight with everything I have but I also want to be prepared. I think about Willow a lot. I’m not ready to discuss. I think about my husband and how this has brought us closer. We have been through a lot together and I’m an idiot for waiting to have something like this bring us back together to where we once were. I should have slowed down and taken the time. Made the time to enjoy him to the fullest. I love you with all my heart and I always will Tom Hannes!

Spoiler alert: Mild political content in this paragraph. I am deeply worried about our health insurance. We are both self employed. We have worked so hard for many years to grow our businesses. We pay taxes like everyone else. Our experience has allowed us to scale back a little over the past 5 years so we can raise our beautiful daughter. It is something I will forever cherish and would not change for anything. Obtaining insurance for self employed people used to be next to impossible. Very expensive and not very good at all. As a matter of fact awful. When I needed extensive medical care several years ago, I sucked it up and got a part time job that included a wonderful insurance plan. That plan saved us. I got up at 3 am for 5 years to go to that job. I was done at 1:30 and could still practice my beloved real estate although at that time the market had crashed and I didn’t have much to do anyways. I ended up having 2 or 3 surgeries during that time. We would be in the streets if not for my part time job. Then came the Affordable Care Act. The real estate market was coming back. I was burning the candle at both ends. It was a no brainer to leave my job that I loved at UW Health and bought insurance directly through the insurance company which at the time was Unity. It wasn’t cheap but the new laws called for insurance companies to not turn people down because of pre-existing conditions….or for anything at all! We were finally given the opportunity to purchase real health insurance! It wasn’t a scam. The listing of things covered was fair. It was an enormous relief for my family.

So now here we are. I’ve got the mother of all pre-existing conditions. Willow has pre-existing conditions. Why does our President and GOP congress hate people so much that they want to take this all away? Yank it out from underneath us? It’s not like I’m taking in other tax payers money. Our family usually pays about $16,000 out of pocket for our medical needs, including the premium. This year we are up to closer to $23,000 out of pocket. All I want is to be able to obtain insurance that is real and not a scam! I’ll pay my share! I understand that the aca is flawed. Can’t we fix it? Can’t we work together for different options and change the things that people don’t like and keep the stuff that saves lives!? So many people would be affected. Well now I am one of those people. Under my circumstances, I don’t know what we will do if I lose our insurance. There are millions of people like me. My heart breaks for all of us who are forced to sit and wait to see what happens. Because having a pre-existing isn’t enough.

That was a load of worry off my chest (still worried) so I will complete this post with happy and funny thoughts.

My happiest thoughts today are that I am starting chemo today to kill this stupid f’n cancer! I’m so happy that my first friend in the world sent me the most amazing gift. She sent me a bracelet that is just beautiful with a message that not many people can see. It says F&*# (but the real word) CANCER in Morse Code! Is that the coolest thing you’ve ever heard of? I show it to everyone I see! Thank you dear friend!

I’m so happy that it is Christmas time. It is just MAGICAL! I’m happy to have such great people in my life. Seriously folks, the messages, cards, support, prayers, gifts…..it blows me away every day! I love you all so very much! I hope you all have many happy thoughts too!!!

HEALTH UPDATE: Bandages came off the site of the port placement. It feels great! I have skin glue holding my skin together while it heals! I want to peel it off like Elmer’s off my hand. Chemo is still a go for Thursday morning. We are still exploring other options.

Ramblings:

I would never had guessed that a cancer diagnosis could offer so much exploring and excitement! Do you have a certain hobby or collection? You complete your project or find that rare piece and the thrill defines why you do what you do. Okay, researching life saving treatment options isn’t really a lot like that. However, it’s been motivating for me to learn more now that I’ve very recently come out of the fog (yesterday). I’ve been a zombie for weeks and I didn’t even realize it! Thank you to my family and friends who picked up the slack while I was out of it. I googled my illness for the first time yesterday. I’m getting involved in the process. It is thrilling to find hope!

With the news from UW Health that my tumor is inoperable unless it shrinks and we “hope” chemo will shrink it, we need to explore. The UW options are just not good enough. Is there anyone more familiar with this ASSinar cell carcinoma? Does someone know how to shrink it? Anyone? Anywhere? I have an appointment with Mayo Clinic in February after my first round of chemo. I am in discussions with Froedtert Hospital and a top notch #4 surgeon to see if he has any ideas. I just got off the phone with a laboratory in California. This doctor specializes in chemotherapy. I need to shrink this thing so someone can get rid of it. I understand all of these people may come to the same conclusions. At least we know we tried. Who knows?! We may even succeed!

HEALTH UPDATE: Port is installed. Didn’t feel a thing. Nurse Molly and all the others were fantastic. Sister Melanie was great company, thank you for taking me while Tom took Willow to school. Warm blankets, free saltine post appetizers with water. Felt like a day at the spa, indeed! Home now! First chemo appointment is 12/19.

HEALTH UPDATE: Mayo Clinic called and offered me an appointment! I will go see them in Rochester, MN in February after my first round of chemo. Port placement is tomorrow morning.

Ramblings:

What a day. So many calls. Being sick is a full time job…and I’m not doing half the work! Shout out to my friends and family that are helping me so much! It’s been very difficult to focus on what I need and where to start in order to save my life. I get so distracted with worries. I would describe it like a big black tornado being sucked into the ground. It wants to pull me in so bad and the sadness in my heart just wants to let go and swirl into the darkness. I can’t let that happen! I have many moments where I’m on the edge. I’m about to get sucked in but then something happens and I’m hopeful and determined again. So many wonderful things happen. My sweet Willow’s smile & laughter. My husband Tom’s loving but concerned puppy eyes. Family and friends supportive calls and texts. The support makes my heart happy and I’m so overwhelmed and appreciative.

Port day tomorrow. I’m not really excited about it. I’ve never had a problem going in for procedures or doctor appointments. The nurses and people are always so nice! I love being taken care of. I often refer to my visits as a day at the spa! This one has me a little grossed out though. There will be a two inch cut in my chest so they can slip the port under my skin. There goes my bikini bod! Lose the weight but get a scar. LOL. It sounds like a gas tank. Just hook up a hose to the port and let er loose. At least it’s logical. I can handle that. Once I heal from this procedure it’s chemo time! Weird side affects. Get this….sensitivity to COLD! No cold drinks. It will make my throat feel like it’s closing. Wait, what? Well ok then. If that is what it takes!

God bless you all, have sweet dreams and a pleasant tomorrow.

HEALTH UPDATE: Official diagnosis: Pancreatic Acinar (ASSinar, lol) Cell Carcinoma involving Spleen. The pancreatic mass grew into my spleen. I misspoke early on when I claimed that a tumor was “on” my spleen. It is IN my spleen and didn’t even come from my spleen. Leave it to me to be off the charts weird. This is a very rare form of cancer. They have never seen a mass this big that hasn’t spread all over. The mass is too big to surgically remove. Cancer has grown into the vessels in the area complicating matters. The plan is to try chemo to reduce the size of the tumor. We need a miracle. I will have a port installed into my chest on Friday and the fun begins the following week with the strongest chemo they have for pancreatic cancer, once the port has healed. I will go to clinic for chemo every 14 days for 4 hours and will also take a pump home to do chemo for 46 hours. They will do a scan every 2 months to see if it’s working. Because it is so rare, we are searching for anyone that knows best how to treat this.Mayo clinic is at the top of our list and we will be making calls tomorrow morning. We appreciate your prayers. Please keep them coming as we will need them. Thank you for you patience as we just found out this news today.

More ramblings in case you choose to read on…..

Tom and I have fuzzy head tonight. It’s really quite surreal. I’m ready to fight. I believe in miracles. I’m also a realist so I’ve got a million things in my head that I want to do. My body won’t keep up. I have good days and bad days. My oncologist said I looked put together with nice hair (referring to how people don’t always look sick on the outside). Inside I wanted to go home and go to bed. My torso is so achy and just off. I hate the thought of eating. Mostly, I’m tired and that could be from the many emotions of the day. My oncologist says I might just start feeling better with the chemo. How do you like that? Sounds so ironic.

My family and friends are beyond amazing. I am so lucky to have a great support system. Holy cow! Everyone asks what they can do to help! I thank you all! Mostly we need prayers. Food is complicated at our house so we don’t need any meals or anything. Visits are wonderful, especially for Willow. We want to keep her in her normal routine but many afternoons that means hanging out with her mom and dad. So if any littles want to come by and play just let us know! Older folks too! Now that we finally have a plan, we will be working on figuring out what we need and will let you know if we need help. Right now we are just counting the blessings we have and praying for the miracle that just must come true!

HEALTH UPDATE: It’s official! I have cancer! Before I dive into details I need more information. There is so much yet we do not know. My information is carefully being looked at by the Carbone Cancer Clinic at UW Hospital in Madison. They are choosing a doctor that is the best one for me and my needs. As soon as I meet my oncologist and find out more about my cancer and what my plan will be, I will share with all of you. I’m sorry to keep you in limbo. I’m waiting again…this time for a doctor to meet with and help me learn what is going on. So you should hear from me by next spring! I’m just kidding, by next year for sure. LOL. I know they are doing the best they can. It just seems like it’s taken forever because minutes turn to hours with stuff like this, right?

Sleep well and love to all!!!

HEALTH UPDATE: No results yet. Still waiting. I’ve made calls. I’ve tried to expedite.

I’m not strong or positive and I’m certainly not feeling any humor right now. I’m going through changes. Waiting for results for something like this is hard to describe. I want the professionals to go faster! Hurry up! My sample is the most important! I need to get this shit out of my body, pronto! What are they thinking making me wait? What does my future hold? This result is the answer to my future! At other moments, I don’t want to know at all. I want to wake up and to realize it was just a bad dream. Take your time! I don’t need results. Right now it could technically be anything….even a teeny tiny chance it is nothing serious! Not knowing is a great way to deny the entire thing.

I’m ready to know. I’ve had days that I’m happy not knowing but this has gone on too long now. I need to know. I need to move forward. I’ve picked out hats on amazon. I’m ready to be bald. I’m ready to be sick. I’m ready to fight. But maybe none of that will even happen because I have no answers! I have no plan! My mind is just going through every scenario of what might happen. It’s maddening.

This is my coo coo for coco puffs moment. I never intended for my blog to become a place to rant and let it all out. With that said, I also want to be completely transparent. The good, the bad, the ugly. I won’t lie. It also makes me feel good. My morning tears are dry and I feel the strength, positive vibes and humor breaking through. More changes every day, multiple times a day. 🙂

I love you all!