Keep the Faith

HEALTH UPDATE: Hi everyone! It’s spa day! I’ve got my feet up and the poison is drip, drip, dripping. Kill something today, would you? Be nice to my healthy cells and kick the snot out of the rotten ones, please! I’m feeling pretty good. One might say I’m still recovering from last week but overall, doing really well.

We met with my UW Madison oncologist today. Labs were drawn for more testing to possibly determine the type of tumor I have. The crazy scan looking to see if it is a neuroendrocrine tumor has been ordered. Waiting for insurance approval. This scan is only used for Neuroendocrine tumors, is expensive and also is difficult to get insurance to cover. Could I really have that cool sounding COLLISION tumor? Not sure why but I must capitalize COLLISION every time I mention it. I think it is for dramatic affect. So the jury is still out on a verified diagnosis. We learned some other tid bits about Neuroendocrine tumors and how they are treated. There isn’t really a chemo for those types. They would go after the aggressive cancer first (the acinar). If this turns out to be a COLLISION tumor, it would be different anyways…but what could the treatment be? You really won’t believe this. They don’t know! IT’S TOO RARE!!!

Meanwhile, my oncologist has an itchy trigger finger. She would really like to start the immunotherapy. This is the treatment that is only approved for me because of all my crazy mutations. After talking and an examination, it was determined that the chemo I’m currently on should get another shake. Sometimes it takes 8 rounds to show shrinking. Beloved Dr. Evans from Milwaukee even thought that after further review of my new scans completed last week Monday, it looked like the chemo was more effective than he originally thought. Although the tumor monster was virtually the same size, the fluid (tumor monster vomit) that was in my belly is virtually gone! That was a really good sign that something worked with this chemo. So here I am. Round 5. Ding, ding!

Big picture: Still pursuing Dr. Evans theory of a COLLISION tumor (a tumor consisting of both Assinar cell carcinoma AND neuroendocrine tumor). Continuing the same chemo treatment. When the 8th treatment is complete, we will likely try immunotherapy. My oncologist does not want to wait.

Ramblings…..

My health updates are so fruitful they feel like ramblings! Are you still with me?

I have been reading all of your comments and I thank you all for your over the top kindness, prayers and compliments. There is one compliment I’m hearing often. It makes me feel funny. “You are such a good writer?!” My response? What?! I am?! No, I’m not! I don’t write. I don’t read books! I can’t sit still that long. I confessed to my book club several years ago that I never read the book and that I likely would never read the book in the future. I respect and love my book club ladies and would never want to insult them. I didn’t get any objections so I’m still going to book club! I love my friends!!! So I’ve been thinking. Where is this coming from? What experience could I possibly have to be called a “good writer”? Well it can only be one thing! My creative writing skills I learned by describing my listings!!

In real estate, the idea is to sell the house, right? In order to sell the house you have to get people in the door! This means the most beautiful photos one has ever seen. Tom does a great job with this and we don’t settle for cloudy days. Only sunshine. It also means a description that cannot keep you away. I focus on the positives and use only hopeful and welcoming words. Small house? I call that “cozy” (I think everyone knows that one). Dirty and disgusting? “Make this one your own!”. Inexpensive vacant land? “A lot for not a lot!”. How about a home out in the boonies. “Drive a little, save a lot!”. Sister Melanie’s house? “No, you are not at Pottery Barn. You are at your new home and it is gorgeous”. Exquisite home high on a hill “This remarkable property perched high on a hill surrounded by oak trees & offering breathtaking views will inspire you to enjoy life to the fullest!”. Multiple offers on that one! You get the picture. I’ve come up with so many home descriptions. I often have asked myself, where did that come from?

Maybe that is where I obtained these skills some have told me that I have. I’m mostly joking that it came from my real estate dealings but I do spend a lot of time carefully crafting the best description possible. I guess I never get compliments on those so maybe not. Ha ha. At the end of the day, what matters most is that you do with your life what makes you thrive. Do what makes you feel good inside and gives you value. Even if the value is for only you to enjoy. I absolutely love writing about houses and I also love writing this blog and sharing my thoughts for the world to see. I feel so good when I do it and I hope you find what makes you feel good too.

Love you all!!!

HEALTH UPDATE: The world tour (Okay, Milwaukee and MN) of opinions is complete. The best news I heard during our travels is that the Shamrock Shake will be back on February 19th and for the first time in my life my Dr. says I should eat all the calories that I can. This makes me so happy. Except for the cold sensitive days when I will need to refrain. Moving on…

The news remains mostly the same. There is no miracle surgery to complete. The cancer must shrink. We learned so many more details and the confirmation of my diagnosis remains a mystery until more tests are ordered. Dr. Evans at Froedtert Hospital in Milwaukee was most impressive, as was his highly skilled nurse practitioner Gabby. Dr. Evans was serious. He looked at my information with laser focus. He is a surgeon, not an oncologist. However, he is dedicated to pancreatic illness. Gabby says he thinks about it all the time. I believe it! This doctor did not just look at the surgical aspect. He looked into the eyes of the tumor monster!! He saw something askew looking at the diagnosis and lining it up with me and my story. Something just wasn’t right. There is another type of tumor called Neuroendocrine tumor. It is still cancer, just a different kind. He said based on the size of the tumor it just didn’t make sense that I was feeling so relatively good. Other basis for this red flag were buried in science with all the tests I’ve had done. He said that if 50 people sat in my chair with the same medical story, 49 of them would have a neuroendocrine tumor.

This man does not just look at the pathology report and accept what it says. He looked at the entire story. To say we were impressed is an enormous understatement. He wanted to do more research and that he did. Gabby called me after hours on Wednesday night. Dr. Evans had been researching my case. He thinks it could be…wait for it…..a COLLISION TUMOR…..! This means a combination of both neuroendocrine and Acinar cell! We need more tests to confirm. Dr. Evans gave my oncologist his cell phone to discuss! His cell phone! I am waiting news and further instructions. I don’t know what it all means. I don’t know if it’s an advantage or disadvantage. There is much to learn. I was just blown away that he would take the extra effort to help me. Finding out exactly what I have is critical so we know how to kill this! We found our guy! I’m also thrilled at the possibility of having a COLLISION TUMOR just because of the name! That’s cool!

Mayo: Well….I was disappointed. All of the health care professionals that I’ve met have not told me what I want to hear. The nurse practitioner was no exception. I thought about this carefully because I never want to make judgement based on this. This NP was different. She stumbled on her words. Facts were changed from one part of the conversation to the next. It was unorganized and confusing. When she was finished, I didn’t think I could trust the information she was telling me. I expected more.

Dr. Ma is an oncologist at Mayo Clinic. He is young and intelligent. He seemed to me like a textbook doctor. Mostly because when we asked him about the pathology report and my diagnosis, he stood firm. It’s what the pathologist said. Period. Acinar Cell. Period. Wouldn’t blink. He had some opinions on my genetic testing results and the mutations situation. He thought it didn’t really matter how many mutations you have but which ones so that the immunotherapy can target that specific mutation. He also had a few ideas for other drugs that may work. Of course that could all change with a new diagnosis. COLLISION TUMOR (insert lightening and a boom)!!??!!?!! He thought we should stay the course of the chemo I’m taking now until it no longer works….which by the way, it’s only “not working” if the tumor becomes larger or spreads. Since mine is holding steady, that means it is working! We were also told that we should wait 8 total rounds of chemo before determining how well the chemo is working. I guess more could happen in the next 4 rounds. Also, something I haven’t heard before was that I had fluid build up in my belly on my first scan in November. Nobody told me. There is a medical name for it but I can’t remember what it is. We shall call it “tumor monster vomit”. This vomit was nearly gone on my latest scan so they tell me that is really good and the chemo is doing something. I swear every time someone new looks at my scans there is something else on it that nobody mentioned before.

On Thursday, we met with a really sharp surgeon at Mayo. Very smart, confident and knowledgeable. He was the first to really write it all on the wall. The affects of his words were a little chilling to me. This is a serious situation that I am in. There are two veins that go from my pancreas through my liver. One of the veins is completely blocked with cancer up into the liver. (In the vein, going through the liver. NOT in my liver.) That vein is toast. The second vein has less cancer in it. This. Cancer. Must. Go. That would be the only way for them to get rid of this monster. They would remove the toasted vein by taking out part of my liver. He said people do “great” without their whole liver! It just grows back some! No Problem! WTF!? The surgeon said this CAN HAPPEN. The cancer CAN shrink out of the vein. IT IS POSSIBLE!

Big picture: I can beat this but I need help. I need this cancer to shrink I’m very blessed that I have mutations and more options than most for chemo treatment. My diagnosis may remain the original acinar cell but at least we will know for sure what I have so we can try the most effective drugs possible. We did not get our miracle surgeon we hoped for but I would do this tour all over again. We have learned so much.

Ramblings…

EMOTIONAL EXPLOSION ALERT!

Wow. What a week it has been. I was emotional (bawling) on the way home last night. I pretty much shut down and didn’t even have the strength to talk to anyone. Not normal. My easy solution doesn’t exist. It’s been a dream of mine you know. Snip snip here and there, lose your hair and presto, you get your life back! That black tornado in the floor had the tightest grip on me yet. It was pulling me to the dark despair in a fierce manner like i haven’t seen before. Then I woke up today. I had a strong feeling I would bounce back and I have for the most part. I can feel the love and happiness that this trip brought. I feel so grateful for everyone that helped pull it off. I can’t go on another word without thanking my peeps.

Sister Melanie. I just burst into tears typing your name. What you have done for me! What you mean to me! Enough of that. Get up, keep going, we aren’t done yet. I love you. LOL. Seriously, you are so amazing. Sister Trina! Thank you for coming to MN with us and taking care of our girl while we were in appointments. Willow had the best time ever. She will surely wake today looking for you and wondering when you are coming over next. Your kind heart, beautiful and uplifting playlist you made for me and just everything you do is so appreciated and loved. Thank you Stephanie and Gwen for playing with Willow so Tom could come to Milwaukee. She had the best time ever and can’t wait for you to come back! Thank you Tom. I know this is so very hard on you. I’m so sorry. Having your big paw to hold during this difficult time meant the world to me. My sweet Willow. Thanks for making me laugh when all I wanted to do was cry. Love is not a strong enough word. You are my world sweet girl. To my Mom. You were with me the entire time. In my heart and soul, as always. I love you. Thank you. Sister Chris, Brother Bill, Brother Ben, Sister Beth, brother Tim, Sister Gwen, Sister Staci, brother Dave, Jeanne, Annabelle, Henry, Billy, Bailey, Nolan, Carson, Daisy, Ruby and Grant….I cannot do this without you. I love you all to the core. Thank you. And to all my beautiful friends, THANK YOU! Your love, support, prayers, cards and gifts are so appreciated. I love you all!

I feel like the mountain is so high. So, so high! The top is in the clouds. Sun is peaking through the clouds. My family, friends and all who have supported me represent the sunshine. I’m coming for you! I see you and I feel your warmth! I will climb this mountain and not look back! I promise!

YOU ARE MY SUNSHINE!

HEALTH UPDATE: Froedtert appointments have been completed. I had new scans and labs done very early Monday morning. Dear sister Melanie insisted she attend the scans even though I felt fully capable to take care of it myself. Thank goodness she helped me! I would have been curled up in a corner sucking my thumb after running around way more than anticipated. We took the scans, in hand, and headed to Milwaukee. We met with the lovely nurse practitioner to Dr. Evans. She informed us that the tumor monster has not shrunk. It hasn’t grown. It appears the cancer has not spread. I’m holding steady with no change. Some could say this is horrible. The chemo is not working. Some could say that it is wonderful news! It is holding this devil disease from hell at bay! I agree with both. After an exam and many questions to complete my profile, we headed home. We were beyond exhausted.

This morning, Tom, myself and Melanie hit the road once again to Froedtert in Milwaukee to meet with Dr. Evans. The facility is amazing. It’s very big, clean, new and easy to navigate. Dr. Evans was even more impressive. He reviewed my records and scans. His recommendation is that there will be no surgery at this time. Although this is not what I wanted to hear, his knowledge and further discussion with us was very informative. He gave me a better understanding of “WHY”. Why no surgery? I’m the first to admit I’ve been in a fog but I really had no understanding that the cancer is actually in a vessel that goes into my liver. The size of tumor monster is secondary to this very big problem. He cannot see how far it goes into this vessel because the vessel goes through my liver! Gross, huh? So now I know why. We need to kill this cancer in the vessel! Radiation and surgery are off the table at this time.

This next bit of information really blew me away today regarding the pathology of the tumor and the unbelievably rare diagnosis of Acinar Cell Carcinoma (ACC). Pathologists have confirmed this diagnosis from UW Hospital in Madison based on the biopsy. Mayo Clinic has also done a re-read of the report and agrees with the diagnosis. Dr. Evans, with his experience, informed us that ACC tumors are not usually so big. He finds it extremely unusual that I am doing so well physically. I’m not on pain meds. I can get around. I drive my car. My current chemo cocktail does not work with the other type of cancer he wants to explore. He doesn’t doubt the ACC diagnosis but sees enough to do more tests to be 1000% sure. I thought this was incredibly cool. If we are going to shrink this thing we need to be 1000% certain we know what it is! If it is misdiagnosed it won’t change things too much that I’m aware of, other than how we treat it.

Dr. Evan and team will be working hard to gather more information and talk to my oncologist in Madison about arrangements for further testing. We are on board with this plan and waiting with anticipation for more tests and more answers. Once we have the diagnosis worked out and double-triple confirmed, we will plan treatment accordingly. We haven’t even gotten to the immunotherapy! Dr. Evans is a surgeon so we will need to discuss with the oncologist more about that.

Just when you thought you could not handle any more twists and turns. MAYO OR BUST! We head out tomorrow morning and will meet with an oncologist tomorrow and surgeon on Thursday. More information! More opinions! More head exploding and mind bending medical thoughts to fill my brain!

Ramblings…..

I’m so tired. My head is tired. My brain is tired. My thoughts are intense. I’m struggling to organize them. I’m drifting so quickly, like a feather in a wind storm, from scared and depressed to curious and confident. Today after the appointment, I announced that it was time for me to turn it off and rest. I turned an imaginary key on the side of my head. The subject was OFF for the rest of the day. Now we all know that is easier said that done. It’s not turned off. With all the crazy going on, I still feel unusually calm. It’s my sweet Willow who sings to me with the softest, most loving voice I’ve ever heard and my trust in God’s plan that help me find my calm place with all that is wrong right now. I’m so very grateful.

Thank you all for your continued support and prayers. It is true, I cannot do this without you!

HEALTH UPDATE: Round #4 of chemo was completed on Wednesday. My blissful days immediately following chemo have been downgraded from blissful to okay, I can still do this. Meh. As each week passes and the treatments continue, I am noticing more challenges. I’m not about to complain about this as I know that this could be a whole lot worse. I basically have the same symptoms but “enhanced”. Yeah…that is a kind word for it. I still find the entire process fascinating. The drugs are crazy and make me feel crazy at times. I’m maintaining my weight which is awesome. I’ve got appointments coming up in February for more genetic testing as well as meeting with a Doctor about healing hands and massage therapy. That should take some blues away!

Today my pump was removed and I filled up on fluids and an iron treatment through my port. The nurses were as lovely as ever. It went smoothly and I got to put my feet up. Happy Friday to me! Next week is HUGE! Monday I’ll start out at UW Hospital at 6:30 am for new CT scans and lab work. I’ll hand carry the results to Froedtert Hospital in Milwaukee for a consult with Dr. Evans Nurse Practitioner at 2:00 pm. On Tuesday at 9:30 am, I’ll meet with Dr. Evans at Froedtert which I’ve been told is the #4 pancreatic surgeon in the world. On Wednesday, Tom Willow and I plus sister Melanie and sister Trina will pack up and head for Rochester, MN to the world famous Mayo Clinic. I will meet with an oncologist on Wednesday at 12:50 and on Thursday a surgeon around 3 pm. Willow will have fun with Aunt Trina swimming in the pool at the hotel. Big news to follow, I’m sure.

Ramblings….

I love #4. I’ve loved #4 for a long time. Writing the update above reminded me of a #4 that has given me so much joy, pain and more joy. Brett Favre of course! With the super bowl coming up this weekend, I will tell you that I will always mourn the aging of my favorite football player of all time. I loved how he played. I loved how he came to the Packers and lifted them up through trial and error. I absolutely loved that you never knew what he could pull off next. The plays! The thrill of it all!!

I grew up hating football. All I remembered from a young age was that my Mom was an INSANE fan (still is)! The worst day of my life (sorry Mom, don’t be upset. I understand now) was when the Wizard of Oz was on and my Mom said NO! The Packers are on! That was back when the Wizard of Oz was only on TV once a year. We probably only had 5 channels on ONE TV. It was my only chance to see Dorothy and Mom had to watch FOOTBALL! From then on, football was not my friend…until I started dating. I quickly realized that it was almost mandatory to like football. I ended up realizing it was pretty fun. I started watching when Magic Man was on the field at QB. He was okay. Better than the previous QB and seemed to be bringing back the pack. And then it happened. Magic Man went down and in comes BRETT FAVRE. Brett who? I loved him almost instantly. I could tell he was different. He caught his first pass. What else is there to say? LOL! Football became a big deal for me. The competition! Hanging with friends on Sunday! I was becoming part of the Green Bay Packers pandemonium. Next thing you know, I was hooked. I didn’t need a guy to guide me. I knew the game. Knew the players. Hooked!!! Of course the best part was a new bond with my MOM!!!!

I do not have a crush on Brett Favre. Let’s just get that out of the way right now. I know there has been a lot of confusion about this over the years. I love him for the GAME. He LOVED the game. I can’t even remember the number of consecutive starts. Iron man! His skills were incredible! His mistakes were even more incredible! 4th and 26 against the Eagles?! Ugh! Dang it! But that was the game. He took chances most would never consider. As Packer fans we took it in stride. We took the good with the bad. I knew that the game was never over if Brett was playing. He could come from behind like no other because he took chances and had the perfect cast of support all around him! I know his game. It’s never over until it’s over and we give it our best shot. Always. We don’t give up. My come back from behind is coming! Thanks for the life lessons Brett!

Best wishes to all my friends and family that continue to lift me up so high! Together with God, I am soothed beyond belief and have been given the strength to keep going and not look back. Thank you and I love you!

HEALTH UPDATE: Living the dream over here on Engelhart Drive. Winding down on another chemo cycle. The chemo was administered last week on Wednesday, January 15th. As usual, the first three days were pure bliss. I felt like a puppy! Running, playing, licking! Okay, not really. But I got a lot of work done and felt human. The crash in the days to follow was noticeably more difficult than after the prior treatment. My oncologist nailed it. She said as treatments progress, I could feel an increase in fatigue. She was correct. I usually have about a half day of energy and then it is swept away by the chemo-nado. Like a tornado, it sucks up my energy throwing it this way and that way. No rhyme or reason. I’m gone. Flattened. Destroyed. F5 damage. The damage is temporary as I rebuild quickly the next day when I wake up. It starts all over on this new day as I start watching the skies around 2 or 3 in the afternoon. The chemo-nado watch is issued as I scramble to get a few more tasks done. Then the sirens….

Today I visited my friends at the infusion clinic. They hooked me up for an iron infusion along with some fluids. They hope to improve my anemia with the iron. The fluids are to make sure I stay hydrated. Next up will be my 4th chemo treatment (Spa day!!) next week Wednesday, January 29th. The following week will be insane with our travels to meet with Dr. Evans at Froedtert Hospital in Milwaukee on February 3rd and 4th. February 5th we are going on a road cruise to Rochester, MN. Home of the famous Mayo Clinic. If you haven’t seen “Mayo” on Netflix, it is a really interesting program about the history of this amazing clinic. I will have new CT scans for these appointments. It will be a telling time period as we learn more about how I have responded so far. I am also scheduled for further genetic testing and there will be more to come regarding the trial of immunotherapy that I am qualified to try down the road after 4 months of chemo are complete.

Ramblings…..

If I knew then what I know now, I think I may have become a nurse. I love nurses. All of them. Even grump ones. Everyone has emotions, right?! They are YES people! The infusion clinic is an open space with comfy chairs and curtains. It’s not private. I can hear many of the nurses. How are you feeling? What can I get you? Let’s make this more comfortable for you. Would you like ice with your coke? See you next time! Let me know if you need anything at all. I got a “bye sweetheart” on my way out. If I was there for emotional repair, I would have been cured!

I’m so intrigued by much of what nurses do. They provide bedside smiles that make sick people forget for a while that they are sick. I love all the tubes, needles and supplies all wrapped up and sanitized. They grab them quickly to get me set up like I would grab a fork and knife. They know exactly what they need. It’s like Christmas all day long, opening supplies. They scan my ID bracelet. Scan my meds. It’s all in the computer. So advanced from years ago. Bing, bam, boom. I’m hooked up. Vitals. Gotta take vitals. I never paid attention before but I’ve noticed my blood pressure has been low so I pay attention now.

Fast paced. I love fast paced. They don’t seem to ever run out of patients while I’m there. They are everywhere and they keep coming. I would imagine their days fly by quickly. I can’t imagine two days are ever the same. I’m not trying to glorify the duties of being a nurse. I can only imagine how hard the job actually is. I know what “code brown” means. I know there can be very long shifts. I know there must be difficult patients. But I also know that if I were a nurse, I would be so proud of myself. They are really good people that help sick people in more ways than they know.

Sending love and warm wishes to all of you!

HEALTH UPDATE: Long day yesterday. I crashed hard! Slept so good. Feeling pretty good today after chemo yesterday.

Ramblings…..

Before the breaking news occurred yesterday, I wanted to share thoughts about the Carbone Cancer Clinic at UW Hospital. My family is no stranger to this clinic. My Dad was treated there as was Tom’s brother. I was so scared. We never knew what to expect for my Dad from one appointment to the next in regards to his condition. I was always praying for good blood results. Praying for news that the drugs were still working. Ultimately the news was most unfortunate. As far as the process, it was almost always the same every single time. Check in. Sit and wait for labs to be drawn. After that, sit and wait to be called back. The nurse will then take vitals and ask many questions. Any pain today? How are you feeling? How were your side affects? Thank you, the doctor will be in shortly. Sweaty palms. Minutes feel like hours. Knock, knock….gasp. Here come the results whether we want them or not.

My appointments are the same with a big exception. I’m not fretting results. I don’t have a blood cancer like he did. I just have a few counts to look at. I feel so prepared for whatever comes my way. Bad news is expected and good news is treasured. I wonder if my dad was as nervous as I was for his appointments. He sure didn’t seem like it. He was a warrior made of steel and he never gave up. I miss him dearly.

Yesterday the clinic was packed. I had a late appointment that went very late into the evening. I spent a long time in the waiting room. Instead of burying my head into my phone, I spent a considerable time looking at people. All different people. Old. Young. In between. Jaw bones missing. Oxygen tanks. Lots of wheel chairs. Some patients you can tell are patients by their appearance. Others you can only tell because they are holding their beeper for their lab appointment. One young girl was by herself and she had blue hair. You could tell she loved life. I realized it had to be one of the most depressing places that I’ve been to. My hearts went out to all the patients and their families and caregivers. Please pray for all of the people affected with disease. Much love and appreciation!

Ok, in keeping up with sharing my experience and keeping things real, I want to share a photo of myself. Not a cute one. A real one. Is is of me with my tubes and hook ups for my home pump. I’m going to try and make you scroll in case you don’t want to see it. You can’t unsee it, LOL!!!! I respect that! My goal is to let people see what it looks like. It’s not scary to me. It certainly doesn’t hurt. I don’t even feel it. It’s okay and this is how we FIGHT!!

YOU

CAN’T

UN

SEE

THIS

PHOTO

I

LOVE

YOU

❤️❤️❤️❤️❤️❤️❤️❤️❤️

HEALTH UPDATE: I’m at UW Hospital as I write this update. Drip, drip, drippity, drip! On the last drug for this day, the third chemo treatment. I’ll get hooked up to my pump and back home to my darlings. I’ll come back on Friday for pump removal and to have infused a bag of fluids and some iron. I’m so tired and I’ve been anemic for months so why not try?!

BREAKING NEWS: Not to be confused with fake news, although I cannot believe it is real. We’ve gotten some incredibly hopeful news today. I’ve done it again! My tumor monster genetic testing came back crazy rare! Crazy rare, crazy good! I am not going to even try to explain this in medical terms. These are my terms. The usual number of mutations in a tumor is around 0-10. Guess how many tumor monster has? THREE HUNDRED AND FIFTY TWO! Mutations, especially at high levels, are sensitive to immunotherapy. I will now qualify for a trial of immunotherapy. ! I need to complete 4 months of the chemo I’m on before I can start. I will be half way there at the end of January. We won’t start it until the current chemo I’m using is not working anymore. This is what HOPE looks like friends!!!! Your prayers are working! Thank you!!!

Ramblings….

It feels incredible to hear hopeful news. It is shocking, just like all the terrible news before it. My head is thrashing. Be excited! Be careful! There are no guarantees. There could certainly be more devastating news. This entire process is one wild mystery novel with more twists and turns than a sock hop in the 50’s. I think I’m thriving on the drama. When did I become a drama queen? I will put the drama element on the back burner tonight and snuggle my family a little tighter with a bigger smile on my face. I will savor this moment of amazing hope and thank God, once again, for every gift of every day.

HEALTH UPDATE: Completed second chemo treatment January 3rd. They checked my labs prior to the treatment. I was cleared for treatment. I then met with a wonderful NP that went over all my symptoms from the first treatment. She took them one by one and had solutions for them to try. So far it’s working really well! I really cannot complain. I think I’ve had 15 minutes of tummy pain. I was very tired yesterday and did small tasks and rested in between. Today I feel pretty good! There are some very strange side affects that are completely tolerable. Cold sensitivity! If I touch something in the freezer, zing! My fingers and hands have a crazy reaction. Kind of like chewing on tin foil with metal fillings. I need to bundle up outside. It last about 5-6 days after treatment. When I eat my first few bites my jaw hurts. Feels like some crazy sensation like taste buds exploding on your tongue. It hurts to cry. The tears are like gas. Well, not that bad. It just lasts a few seconds. Weird stuff! I’m amazed at how all of these drugs can take over your body. As a self described control freak, I’m half fascinated by these things and half uncomfortable that I have zero control.

Sister Melanie has helped me so much. She has taken over all of the planning, research and appointments needed for this adventure. As it stands today, we are waiting for confirmation to meet with a very skilled surgeon at Froedtert Hospital in Milwaukee. We are also confirmed to meet with the fine people at Mayo Clinic in Rochester, MN on February 5th. The Froedtert visit will also take place that first week of February. It lines up with the completion of 4 rounds of chemo. There is so much coordination involved! Sending records, getting new scans, new blood work, who does what, what will insurance cover or not cover. It’s mind boggling and i would be absolutely lost without my sister. Thank you dear Melanie. Tom and I don’t know what we would do without you!

Next chemo appointment will be next week on January 15th. There will be one more after that on January 29th before we hit the road for more opinions. Until then we are just living the dream! Learning how our new normal looks. I’ve got a mega 7 day, morning, noon, evening, night pill box that I’ve found both helpful and just astonishing. So many drugs! I’ve never taken so many drugs my entire life. I’ve been blessed to not need them. This change is dramatic.

Ramblings…..

Ohhhhh…..what to talk about. I’ve had so many thoughts running through my head. I’ve said this before but I’m serious. I’ve never been knocked down before long enough to think about life! I mean REALLY think about life! Full throttle! No time to reflect! No time to finish my thoughts. No time to play out my life as I want it to be! Go, go go! All that has changed in what seems to be an instant.

DEEP & SENSITIVE THOUGHT ALERT. So I’ve realized I think I’m dealing with some denial. I know this because I just realized a couple days ago that I do not want to die! I’ve thought about death many times. Being a self diagnosed hypochondriac, I’ve always expected it. I don’t think I’m afraid of death. I don’t feel like I am. My faith is strong. My vision of the afterlife is filled with love and light. I don’t believe I will see my dad in his flannel sitting on a lawn chair with a pabst blue ribbon. I think I will feel his soul instead. All the souls of people I’ve lost including my precious baby that we lost at 8 weeks along. I think she will be my guide. I don’t know why I’m so convinced she is a she. Just a feeling. The denial has been recognized so I’m dealing with the sads a little bit more, however, this does not mean in one single way I’m giving up or giving in!!!!!

In many ways it is recognition that I won’t give up. Can’t give up. Let’s live like there is no tomorrow! Fight this tumor monster and keep on keeping on! I need to be here!!! My biggest worry, by far, is leaving those that I love and that love me. I feel the pain. It’s so real and intense. I will do all I can to fight. I promise. One day at a time. This experience is like being sight impaired and putting on a pair of glasses for the first time. Everything is so clear! LIVE! LAUGH! LOVE! Deep thought ramblings complete.

I wanted to share some fun stuff too. We took Willow to the Grand Geneva in Lake Geneva to stay overnight with Brother Bill, his beautiful wife Beth and cousin Grant. They treated us to an amazing get away. Willow adores her cousin so much and had the best time playing with him and swimming in the pool! They even hit the hot tub! Those kids. So precious. It warmed my heart and we had the very best time. I can’t wait to do it again. I was also able to have a wonderful visit with my dear friend Tom. I’ve missed you so and while we are both not at our physical best, our hearts and minds are solid and it was so beyond good to see you!

All of the cards, letters, messages and calls. I can hardly take it. The love is overwhelming. Your support and friendships are out of this world amazing. It’s getting more and more difficult to put into words how it keeps me going. Thank you. Sending so much love and happiness to each and every one of you!

HEALTH UPDATE FOR MY MOM: Please say some prayers for my mom as she is in the hospital in Fort Atkinson with the flu. Sister Chris is also sick. Your prayers are appreciated!

HEALTH UPDATE: Recap of events. Went to ER Friday night with a temp of 102.4. Was admitted to UW Hospital and tested for every type of infection under the sun. Not one test came back positive. I’m just about to go home on Sunday afternoon and they remove the connection from my port and discover an unknown fluid. Infection!!!??? Here is the twist. NO!! It was not an infection. After getting tested in the lab it could not be proven to be infectious. This morning the folks in radiology checked out the port with dye and there are no leaks and looks good. This is great news. No removal of old port. I can keep the one I have The doctors had some term for the fluid but I don’t remember what it was. I was too excited to care! I was to be released!!!

Ramblings…

Home sweet home! I can’t tell you how good it feels. Cuddles with my family are just so much sweeter these days. The hot shower and clean jammies weren’t bad either. Tom cleaned the whole house trying to get rid of every germ on every surface. Everything looks great, feels great and is great.

If only my Mom was well. It breaks my heart that I can’t run to her side. I want to hold her hand, rub her head and hold her puke bucket. It’s just too dangerous for me. Now I know how she has been feeling these past weeks. I know she would be by my side day and night if she was physically able. MS has taken it’s toll on her travel and energy. I’m swearing inside right now. While both of us have our own health struggles that are keeping us apart, we could not be closer. She is in my heart and soul. There are many times we call each other 2 seconds after one of us is thinking of the other. It’s a strong bond that illness can never break. I love you Mommy!

Thank you God, friends, family, doctors and nurses. I’m so thankful.

HEALTH UPDATE: WOMP WOMP!!! I’m NOT going home!!! They found the infection! My hero nurse brought in my discharge papers and all she needed to do was remove the tubes and stuff from my port. That’s all! Bag was packed, I was ready! She removed everything without incident. She was washing my skin around the port and starts squeezing. I look down. I look up. HOLY SHIT, WHAT THE HELL IS THAT? Yep, my port is infected. Complete with a goo I’ve never seen before. I’m not going anywhere.

Although I’m disappointed that I’m not going home, I am so relieved my hero nurse noticed this! I would have been right back here in the next day or so sick as a dog with a potentially bigger problem if the infection grew out of control. Now we wait to see what kind of bugs grow out of this stuff so they can treat accordingly. Those results can take a few days. I’ll continue the IV antibiotics while we wait. Thank you God for watching over me!