Keep the Faith

HEALTH UPDATE: The fevers keep coming. I’ve had a few breaks. One overnight with no fever and also a few morning with very low. The antibiotics don’t seem to be helping so I can only conclude it is cancer or immunotherapy related. The fevers are predictable and they feel the same over and over. One hour of chills. One hour of sweats. Couple hours of no fever and then it starts all over. It is wiping me out. I look different. I can’t walk well. I’ve been on the couch or in bed for weeks. The good news is that if this treatment is working I’d do it all over in a heartbeat! I can still take more.

Oh yeah. There is more. My belly is blown up like a watermelon. Look out because if you run into me you will bounce off and hurt yourself. It is not painful but it is so uncomfortable. My organs are already squished and this isn’t helping. I really can’t eat much. I feel like I just ate the last bite of Thanksgiving dinner all day long. I went to the hospital yesterday to see what is going on. I had a CT scan and labs done. We suspect Ascites which is a fluid that builds up (formerly called tumor monster vomit) when your liver is not draining properly. Since I have some veins filled with cancer and some with blood clots this could be the issue. Just speculating. I shouldn’t do that. I’ll need to wait for the call.

Those seem to be the big items on my list at the moment. Other than that, I’m top notch.

Ramblings….

Oh my heavens. What can I possibly say right now under the conditions we are all living in? In a way, I feel like i’m starting my process all over again. All the unknowns are yet to be discovered. The worry and anxiety of a health crisis. Not just my health crisis! Potential crisis for everyone I know! Separation anxiety. I need to feel my people! I do find some sense of relief using facetime. Thank goodness for facetime. My silver lining is being quarantined with my family. Willow is amazing and it’s been nothing short of incredible to see her adapt and grow. Tom is sill busy as ever filling our orders, cleaning, working, all of it. He won’t sit down. That is how he rolls. I make him take breaks sometimes just to sit with me. I will treasure these moments forever. I don’t care if the house is messy. Just sit with me.

When I was diagnosed along with a pretty grim prognosis, this is the last thing I thought I’d be doing during this precious time. I wanted to go on a trip. We could get an RV and take Willow to the ocean! That will be my goal. I’m flexible on the RV, LOL. Sounds like a lot of work. Driving our car and a cottage on the beach would work too. East Coast baby! It feels so good to have dreams and goals. It is what keeps us going. I’m going to use this as a tool to help guide me to a more positive outlook. I won’t lie, my outlook has been taking some big hits. This will help. My heart is thinking of you all and hoping you are well. During this difficult time it’s so easy to fall into the black tornado in the floor. We are in this together and we need to do whatever is right for ourselves to find peace and enjoy every moment. I’ve also discovered this absolutely beautiful song that soothes and inspires me.

Be well and God Bless!

HEALTH UPDATE: It seems like it’s been I while. I can’t remember where I’ve left off. Since my first immunotherapy treatment on March 13th, my fevers have continued, higher and almost always all day long, along with severe fatigue, lack of appetite and GI issues. On Tuesday this week my temperature reached 102.1 overnight. It was decided by my oncologist that I should be tested for the coronavirus to rule it out. I got an appointment for the test Wednesday midday and results would take 3-5 days. Wednesday afternoon my temperature was 102.7. Too high. It was time for another visit to the ER. All the tests were negative except for one! I have a “germ” in my colon. My poor colon. It’s been through the ringer. They sent me home yesterday with a new antibiotic and hopefully I will be better soon. Sitting up to type this was not possible a few days ago so there is progress already.

Ramblings….

COVID-19! I’ve been excited to share my experience with being tested for covid-19 and also being admitted through the ER during this incredibly difficult time for our country. The first process was the test. To put things in perspective, I do not live in a small town. I live in Madison, WI and my healthcare is through UW Health. I had several screenings on the phone to see if I even could get the test. I started with a number dedicated to COVID-19. They sent me on to my primary doctor who sent me on to a video meeting with a doctor. Everything was organized and streamlined but I’m not sure why you need to go through all these people and explain symptoms over and over. I had to download an app for the video meeting. It was a pain in the butt and many of the options didn’t work but the system was good overall. I barely waited at all for my video meeting and the doctor I spoke with was so nice and caring. That was incredibly welcomed and appreciated. Because I’m high risk and my symptoms, she confirmed I met criteria to have the test. I would receive a call to make an appointment. I received a call Wednesday morning to come on in.

I went to the Urgent Care Clinic on Mineral Point Road in Madison. They are well organized and appear to have set up a waiting and testing area just for the virus. I’m not positive about this new shiny area but I’ve never seen it before and we’ve been there many times. I remember I took Willow when she was around 2 1/2. I thought she swallowed a pumpkin stem. You know, one of those little pumpkin looking gourds? Nope, ear infection. The virus area waiting room was spotless. There was one other patient waiting to get tested. I was called back quickly and the good times rolled. They take a swab and stick it wayyyyy up your nose. No big deal. All done, on my way. I would have my results in 3-5 days. On my way out, the receptionist was wearing gloves and using disinfection wipes to wash my chair that I used in the waiting room!! Impressive!!

I’m sick. I go home and take my position on the couch. Mouth hanging open and just hoping it all goes away. I’m getting the chills. I take Tylenol. I take my temperature first and it is 102.7. Shit. Not good. I call my oncologist. She wrestles with the options. She doesn’t want me exposed in the ER. She knows I need x-rays and labs. She needs to make calls. She calls me back and there isn’t a way to avoid the ER. I’ve already got my bag packed. I know what is coming. I’ve been through this fever business twice before. We load up in the car and away we go. Tom and Willow drop me off and saying good bye is hard but I don’t mind being by myself. It’s boring for visitors. Now it is just plain dangerous with the risk of catching covid-19.

The ER is business as usual. No crowds. No panic. The only differences that I notice are large glass shields attached to the check in desk. It’s like a sneeze guard at a salad bar but bigger and tougher. The nurses all have masks and face guards on. The guards with the big clear plastic shields. I wore one of my little yellow masks. I was upgraded. My oncologist called ahead. The ER was ready for me and I was welcomed with open arms, as usual. Nurses and all Doctors I saw did not seem rushed. Because I had taken the Covid-19 test and results were not yet in, they wore masks, face shields and gowns. Gowns were thrown away after each visit to the room. New gowns for each patient visit. They spent time with me to make sure I was okay and didn’t have questions. They took half my blood transfusion from a few weeks back and used it for tests. I was admitted.

I was taken to a room in an unfamiliar location. “General Internal Medicine”. I think that is code for “sickies that are waiting for covid-19 results”. Just a hunch. Same mask, gown and shield for the nurses. No panic. Service and attention was flawless. Business as usual. I did not sleep well. It was a dark night. My thoughts wandered. Although I was concerned about being positive for coronavirus, I wasn’t shocked about it. Just needed to finish my planning for my funeral that nobody would be able to come to. You know, just in case. I’m weird. It’s so important to me that I’m prepared! I would think I could fight the virus if I got it but these days you never know. High risk is not the group you want to be in but it doesn’t mean the end! Yet, I still want to be prepared. I wonder how many people are scared or freaked out? I feel for you all! I’ve been there! Once again, my prior experience in life has also prepared me for this virus! The unknown. No answers. Wait and see what happens. It has prepared me. I am no stranger to these feelings. They are however, still sometimes impossible to comprehend or understand. They are like constant question marks floating in your head. My best advice is to cherish your surroundings and things that make you happy. The amazing silver lining is this: Take out a wedge of time for YOU. Just you. Only you. I was half awake around 5 Thursday morning when my delightful nurse Sue proudly ripped off her mask (no longer required) and exclaimed, “YOU ARE NEGATIVE FOR COVID-19!!!!”.

I was transferred to another room shortly after that. Much of the same minus the masks and face shields. Another noticeable change. To limit patient contact, Doctors, pharmacy and admissions called me instead of coming to my room! Smart, huh? I was very tired so I napped often. Not before I ordered food. My appetite was back! I had a piece of french toast and two sausage links. I also had some watermelon. The hospitalist was so nice! Young! Energetic and so positive! He said they would like to wait for the results for the outstanding tests and we would go from there. I took a shower and changed my clothes. It felt so good. I’m so tempted to send you a photo of wet bedhead after it dries but you all are going through enough. They popped in with a new medication, explaining that they found something. A Germ. In my colon. Causes the squirts and fevers. I have a new medication, 4 times a day for 10 days. I pray this is the answer to making me well enough to sit up, walk around, do stuff. Even if it’s just in my house! Everything else is good but still waiting for blood cultures. They take some time. It was my time to go home.

This news of going home was different. While I wanted to be home, it was so hard to go home. It’s a lot easier to hide in the hospital. Nobody can see me. My spirits are so much better. I’m good. I’m strong. I’m mostly positive. If the nation can go through this unknown feeling of what will happen, so many experiencing loss and worry, so can I. It is so much easier to be happy on the phone than to look at my face. My body. I look in the mirror and it is different now. I don’t look right. I’m so tired I can’t stand or walk for long. I’m on the couch. I need to stretch my arm behind me to grab a tissue. It can wait. I’m too tired. Oh the dreaded bathroom. Too tired but that cannot wait. The nurses put a fall restriction on my door from their own observations. It was nothing I requested. I wasn’t surprised. The nurse asked if I wanted a ride to the door. Nah, I can walk. No I can’t. Just take the help. Yes, I’m sorry, that would be very kind. You can just drop me off at the pharmacy. Oh no. I need to stand in line. Would you mind waiting for me? The nurse is full service and very kind. Of course I can wait for you to get your prescription. As she rolled me to the door to meet Tom and Willow I broke. Through my tears I mumbled out loud, What has happened to me? Six months ago I was a normal person! Or so I thought. In 6 more months I will be a new person again. I will fight fight fight and not quit. This is temporary. TEMPORARY.

Please be safe. I’m thinking of everyone, sending prayers and love.

HEALTH UPDATE: First dose went off without a hitch. No immediate side affects or crazy reactions. Labs and ECG were all fine. This drug works very slowly. It likely won’t even start working for a few weeks. I will get my dose every 3 weeks. I was treated like a star. I had my own hospital room on the Research floor. They did everything in my room and I even got to order lunch. I had a grilled cheese, green beans (fresh and steamed, my favorite) and apple pie with coffee.

Shortly after returning home the fatigue settled in followed by a really wicked fever. Woah. Laid me out flat for the most part. Slept pretty good but the fever did not give up. Have been battling fever, fatigue, the squirts and severe stomach pain since I got home until a few hours ago. On the mend! Fighting the fight!

Ramblings….

I feel like I’m in a dream. Such strange times right now. It almost doesn’t seem real! Are you with me? First the fight for my life. Now the fight for all lives? I am very worried about the coronavirus and what it will do to our beautiful country filled with all of our wonderful people. The days to come will tell us more of the story. I can fully understand the anxiety of this moment as we all wait to see what happens. Who will catch it? Who will pass? Someone i know? I know many at high risk including myself and my beloved Mom. I self quarantined a few weeks ago but broke the rule by going to the grocery store once and to my sister’s house one day overnight for sister night. Oh and of course my home away from home, UW Hospital. Willow hasn’t gone to school in 3 weeks. Now it is closed. Tom is running all over trying to stock up and keep his family nourished. Now is the time we cut all that out. No more parks, only outside play. Gah! Maybe one more trip to the store. Is there anything left? We need to hunker down. Now.

I’m thinking of my thoughts to write next. Something strange is happening. I think I’m speechless. False alarm. LOL. This is just all too out of the norm! These questions of what will happen next bring me back to thoughts of life and death. How have I lived? I’ve lived SO WELL! I don’t have regrets. Sure, I’ve had horrible moments and have made big mistakes. I have learned a lot from those mistakes. Most made me a better person and helped me to make better choices. My career has been incredible. I worked so hard and it was all worth it. I’m proud of what I’ve accomplished. I’ve learned so much and have so many clients I’ve met that I consider very good friends. The people I’m surrounded by are so…so….so…. I don’t know. I will simply say, THE BEST. My family! How lucky am I? I’m still using lessons taught to me by my Dad to this day! I’m showered by love and support by so many. My heart is full of love and gratefulness. Life is so good. I’m going to focus on this for the tough days that are certainly coming. I wish you all safety and peace.

Of course I think of death as well. I often feel like I shouldn’t talk about it. I know it makes some feel uncomfortable. Please skip this paragraph if you are not comfortable. I go back and forth on this topic. Most days I’m comfortable with dying. I believe it will be beautiful, I will not be scared and I trust God’s plan. Other days I’m kicking and screaming like a baby. I don’t want to go! I’m not done here! My sweet girl!! My Tom! I can’t live with the pain I’m causing! That is the deal breaker for my comfort level. Yet I forge on to make arrangements just in case. Keep in mind, these are arrangements that could happen years down the road. Who knows? I won’t say I didn’t enjoy making them. It’s like planning a party for ME and I won’t feel awkward like, look at me!.LOL. At the end of the day, It’s not my choice. Let me rephrase. It will not be my choice because my mo jo is back and I’m ready to take on whatever comes my way. Can’t stop. Won’t stop.

i would like to thank and apologize to all of you who sent us cards and gifts. The love is enormous and I’m so far behind on thank you cards and messages. Please know i”m thinking of you and we all appreciate your generosity, thoughts and prayers. Willow has been absolutely thrilled with the outpouring of cards and gifts. I think you can all stop now! Shes getting too spoiled! Thank you all from the bottom of my heart!

Please be safe out there. I’ll be thinking of you and praying for safety for all!

HEALTH UPDATE: I feel like crap! There really are no answers but I suspect the chemo was actually taking care of some of my symptoms. I had my last treatment 2/12 with the home chemo bomb until 2/14. I haven’t had chemo so I can be “clean” and free of any other drugs for when I start immunotherapy. I am scheduled to start this Friday, 3/13!

Last Friday I went to UW Hospital for lots of tests. MRI (eeeeee…ewwwwww….bang, bang, bang! eeoooooo, eeeeoooooo, eeeeeooooo!!!!), CT Scan, labs, etc. I failed the hemoglobin test, otherwise I haven’t heard anything about the others so assuming they are acceptable. They added on a blood transfusion to my day last Friday. I’m going in today to get hemoglobin retested.

Ramblings…

This has been a rough time period for me. I’m sick feeling. Fever. Exhaustion. Tummy pain. We all know what happens to me when I feel sick. I get depressed and cry a lot. I’m so depressed that my body won’t do what my mind wants to do. So many worries. I never liked the idea of zero treatment for any amount of time. Well here we are. Nearly 30 days with zero treatment. My mind is going wild. Is it growing? Spreading? Am I doomed? I’m getting all my old symptoms back. They are similar to the ones with chemo but worse.

Immunotherapy. Sister Melanie is doing her very best to help me through this. This treatment is our saving grace. It is our GAME CHANGER as my oncologist has described it. I am scheduled to start in two days. Why can’t I feel the excitement? Why doesn’t it make me happy? Why doesn’t it take away the paralyzing sadness that I’m feeling? I’m insecure. Too many failures. Failures in life? I appreciate my failures in life though. That is how I have learned so much. Failures in a medical sense. Tom and I went through 13 cycles of fertility treatments. I have bum ovaries. They all failed. They failed for a reason. The best reason of my life. They failed because if they didn’t, Willow would not be my daughter. The difficult time before Willow became our daughter was as painful as my life has ever been to this point. Keep trying, be positive, not good enough. Fail. Fail. Fail. Fail. Fail. Fail. Fail. Fail. Fail. Fail. Fail. Fail. Fail. Thirteen times. Is this why I’m so hesitant to have confidence and believe I will not fail? The chemo failed too. I’m running low on options. Long story short. I don’t feel good and I’M FREAKING OUT!

Now for the good news. I feel a twinge of something this morning that I haven’t felt in a very long time. I’m not sure what it is but it doesn’t make me cry! It might be…..HOPE?! I think it might be. I know it’s something positive. It isn’t strong but I’m praying to God that this feeling grows and grows. We have a few green plants popping up in the yard. Spring is a time for growth and renewal of all things beautiful. Leaves. Warm fresh air. Flowers. Easter. Hand in hand walks. I’m feeling like I’m becoming more able to talk myself out of this depression as I tune into this faint feeling. Why on earth would I want to be so sad when I can be hopeful and outside enjoying the warm sun? I need strength. Praying for strength. It’s critical right now.

This tug of war between despair and hope is ongoing. I’ve been told I have problems asking for help. Nothing could be more true. I’m independent! I’m the helper! I can do whatever I set my mind to. At this moment I find myself struggling. I can’t do it all alone this time. I ask you for your prayers. Please pray that my hope grows and grows. I know how important it is to be positive. I’m currently losing that battle but it’s not over. I will always FIGHT FIGHT FIGHT!!!!

I love you and thank you all from the bottom of my heart!

HEALTH UPDATE: None

More ramblings….

I suppose about an hour or two after my last post was published, you won’t believe what happened!???!!!! I have no fever. I. HAVE. NO. FEVER. Not high, not low grade. NO fever. I didn’t cheat and take Tylenol. NO fever. I may sound like I’ve lost my marbles a lot but I’m consistent with my mood swings. My mood depends 99% on how I am feeling. I feel good!! I FEEL GOOD! In my head I am running down the street and clicking my heals. I’m not going to push it, LOL. So I wanted to thank ALL OF YOU and all of the prayer warriors out there!! I could cry! This is the hope I’ve been looking for! I thought it would be a perfect scan but if that damn fever can go away after all these days, that has to be some divine intervention right there. THANK YOU! THANK YOU! THANK YOU! I love you all!

HEALTH UPDATE: I’ve had a low grade fever for 10 days straight. Could be a virus. Could be cancer related. No way to be sure. I went to the ER Sunday to get it checked out. It’s not a bacterial infection. Chest x-ray and labs were all negative.

I was notified yesterday that I will have a full day of scans, MRI and tests all day on Friday in preparation for immunotherapy which they hope to start next week, Wednesday. Please pray I receive final approval and acceptance to participate in this trial.

Ramblings…

I’m really not happy. It’s been rough. If you are looking for a happy, funny feel good post today, this is one you will want to ignore. I’m debating on even throwing this all out there! It can ruin a persons day. I’m here to inspire. Actually, that wasn’t my original intention. When people comment that it inspires I really liked that so I’d love to continue….but….not this post. There is a lot for me to release, mostly due to selfish reasons. It makes me feel better and I’m desperate to get my mo jo back. So here it goes…

This fever. It is making me crazy sad. This is worse than usual. For the immunotherapy I need to be off chemo for 30 days so my last treatment was 2/12/20. It really did make me feel better! I wonder if this constant fever is because of the lack of chemo? There are so many poor souls with the flu, colds and other infection illnesses. Did I catch something? Nothing bacterial. Did I catch a virus? I’ll never know. Doesn’t really matter. I just need to rest and drink liquids. I cannot be sick for immunotherapy! I need to be in tip top shape!

I went to the ER on Sunday. It was a treat to have “Ray” as my nurse. He was kind, caring, smart and he did not mind my ramblings. He has a young daughter. I enjoyed his company and that of Sister Chris, God daughter Ruby and later on Sister Melanie. They are all so caring! They just drop everything and come running. They are great company and it allows Tom to take care of our girl. This is why I like to write. I replay the days I think are horrible and bam!, there are good moments too that are easy to forget when you are wallowing in your own self pity. Thankfully, my ER visit was not 3 days like the last time. I was home by 7 pm! All things bacterial proved to be negative although I’m waiting on a blood culture that takes several days.

I’m going a little crazy about catching a cold or flu. I have to stay healthy. I don’t want to screw anything up or delay immunotherapy because I’m sick. I’m a sitting duck with cancer and no treatment. Is it growing? Is it spreading? I need treatment ASAP. I have decided to quarantine myself. I’m not going anywhere. Oh, except for UW Hospital all day Friday with all the really sick people. Gah!!!

So the real problems? Illness and depression. Whatever is going on, I’m becoming so extremely fatigued that some days I just lay on the couch and moan. This past week has been consistent. Lots of laying, lots of too tired to get up and eat. Lots of dwelling on the situation. This. Is. Cancer. Then my thoughts turn to cancer. What is it doing to me? This can’t possibly be my high spirited, high octane life! But it is. Can’t I have some good days instead of a couple hours? I have cancer! This is going to get worse! I’m getting pulled into the tornado in the floor. Lord, give me hope! I need to be released of this negativity so I can heal! My oncologist is very excited about immunotherapy but I am not. For whatever reason I am doubtful of any resolution. I hate that I feel this way. Make it go away! But I can’t. I need a new scan that shows this bitch has shrunk. I need labs that show levels are now normal. Nothing so far has been hopeful in my eyes except that the tumor monster didn’t get worse. That is NOT going to get me out of this mess! I NEED SOLID HOPE!!!! I need it in the form of a cleaner scan. I need something to go right! BTW, I’m starting to sweat and I need to cut my fingernails because the high rate of speed that I’m typing with nails too long are causing errors. There. I let it out. And here come the tears. It’s a great release of this heavy burden.

I don’t feel guilty for having these feelings. But then I remember that if I didn’t have all of those mutations I wouldn’t even have this opportunity to try something else. Can you imagine? I would have already burned up all my best options. POOF. Thank you Lord for helping me to keep realizing the good in this situation. Once again, my anguish turns to being grateful.

My sweet love Willow is 5 years old. She has become very jealous of the cards that I receive. If you have a few extra moments in the day could you send her a quick hello? I’ve been debating with this because I know I created this by spoiling the snot out of her. Then I thought….why shouldn’t she feel special? She is going through this too. She’s my tough girl. I know a few simple cards would make her day.

Please send to:

Willow Hannes, 609 Engelhart Drive, Madison, WI 53713

From the bottom of my heart, I thank you!

HEALTH UPDATE: This spa day, otherwise known as chemo day, was very different than all the others. We skipped the chemo part. The tumor monster has rejected the chemo’s powers. Although the powers held back growth, it did not minimize and that is exactly what must happen. Goodbye folfirinox. Thanks for not making me worse but you just aren’t strong enough. It was proven by scans and blood tests.

It is time. Time to play our miracle card. Immunotherapy. I’ve already been “clean” from chemo drugs for 14 days. 16 days to go to meet the requirement of the trial. The team is busy getting me approved and all necessary tests completed for me to participate.

My oncologist confirmed what I was told by the Doctor on call last Friday. No growth in tumor, no shrinking. No spreading of cancer. Holding steady. The COLLISION tumor theory was a real let down (only because I love the name COLLISION tumor). Although there appears to be a 1.1 cm area with neuroendocrine tumor cells, it is not worthy of special treatment or a change in the course of treatment. Cheers to Dr. Evans at Froedtert in Milwaukee. You were correct.

We are still waiting for the genetic tests to come back. Because of the sensitive nature of these tests that could affect my immediate family and their children, I will not be discussing the results. The results will not really change my outcome and this blog is about me and my insane medical story, not that of my beloved brothers, sisters, nieces and nephews. Thank you for your understanding.

Ramblings…..

The long and winding road of uncertainty is becoming shorter. Although the chemo did not do what I had hoped for, a new chapter begins and the road is now straight and flat. I see direction. I have answers. I’m not waiting anymore for explanations. I think this last round covers them. This is it. It’s time.

Immunotherapy. It is such a miracle that I was asked to participate in this trial (still subject to approval by drug company). Immunotherapy is a new and exciting treatment that in simple terms makes your own immune system attack and kill your own cancer cells. There are immunotherapy drugs that are used and approved by the FDA. I don’t believe there are any at this time for pancreatic cancer that are approved by the FDA. My trial focuses on the tumor, not the type of disease.

There will be 90 participants across the United States participating in this trial. There was one other trial with this drug that was already completed. It consisted of 19 people and the objective was to see how much of the drug could be tolerated. Geez, glad they got that one out of the way. There are zero statistics on my trial as it isn’t yet completed. I will be administered this drug through my trusty port every three weeks. I will have whatever tests and scans that the drug company requests. They own me.

There are many possible side affects but my oncologist is downplaying this greatly. They also add that there could be side affects that they haven’t listed since it is so new, not many people have taken the drug yet and they just don’t know! I can’t be bothered with the thoughts of side affects. What am I supposed to do? Say no? I’m sorry. It’s all too risky. Well here it is all on the dotted passing line on my straight and flat road. This is the best chance I’ve got to slay this monster and I have no choice but to take it.

I was really wanting to have spa day today. Drip, drip, drip. Chemo treatment is in my safe zone. I’m familiar with it. I know how I’ll feel afterwards and for the few weeks to come. Even though I’ve been feeling worse lately I knew it was keeping things stable. I love to have sister time with Melanie. We didn’t have time to catch up today! I wanted chemo to work!!! I have to face the facts. It’s just not working. I know immunotherapy is the best option. My oncologist is very excited. She feels that my very heavy mutation burden will react well to this treatment. But there are no guarantees. This part scares me. I’m haunted by “what if?. I want guarantees! Life doesn’t work that way. I need to put my big girl pants on and take this amazing opportunity and just DO IT! Watch that monster slither away to hell, cell by rotten evil cell.

This is why I blog. I have many fears. When I spell them out they don’t seem so bad. It is a selfish endeavor as it helps me greatly to sort my feelings and bring me off the cliff. They are fears that I can control and calm when I think of what a miracle it is that I qualify for this trial. I can calm my fears when I think of all my friends and family that love and support me. I can calm my fears with the single thought that my God is by my side. It really is a wonderful feeling!

Sending blessings and love to all of you!

HEALTH UPDATE: Many unknown questions waiting for answers at this time. Last week consisted of a visit to Integrated Health, Imaging/Radiology for the crazy scan and MRI and Genetic Counseling. We are waiting for the full explanation of my crazy scan and genetic tests. Next week Wednesday is spa day. I’ve been feeling worse this last round but it’s manageable.

Ramblings…

My health updates are stretching out into ramblings so I shortened that up so those that just want to know what is going on without having to read through my ramblings can do so.

I started last week with a visit to Integrated Heath. It’s a mind and body type clinic. The doctor, a young man with a smile for miles, greeted me in the waiting room with a hug. We talked and talked. OKAY! I rambled! He said I’ve got some great things going for me with this blog. He also recommended some easy to do at home massage techniques and other ways of relaxing. I nearly fell asleep at the appointment. It was so calming. Wish I could sit in his office for a few days.

Tuesday I had the MRI/Dotatate Scan/PTScan. Woah, woah, woah, WOAH!!! That machine is crazy. I felt like I was in a movie…or maybe heaven. I’ve got headphones on. Led Zeppelin “All of my love” is playing loudly. I told myself, don’t open your eyes! You don’t know if you are claustrophobic. I opened my eyes. Didn’t bother me at all. Okay, truth be told, I took two magic pills for calming. Music playing. Nothing but white all around. Surreal. Then the noise. REALLY loud bang! eeeeeeeeeee! weeeee oooooo weeeeee eeeooo bang bang bang bang in quick succession. It was like a fire truck party during the “who has the loudest horn” contest all at a construction site, on crack! What on earth could make such a noise? Oh well. It was yet another adventure. Besides getting movie butt at the end (my butt always hurts if I sit too long. I can always tell it’s a good movie if I don’t get movie butt) it was fine and interesting.

Thursday I went to the genetic counselor. She blew me away. She was so kind to us, is so smart and was born to explain gene mutations. We talked a long while of my family health history. They took blood for testing and now we wait several weeks to see if the mutations are in my blood as well as my tumor.

I wasn’t notified but turns out my oncologist was out last week and so I never received a call about my crazy scan results all week. I ended up checking in on Friday and the doctor covering offered limited information about my results. It’s really good news. I was scanned head to toe and there is no other cancer anywhere!!!!! Tumor monster is “stable”. I’m so happy it’s not worse. There was also a slight “glow” which indicates there are possibly some neuroendocrine cells in the tumor monster. He didn’t interpret. I need to talk to Dr. Evans and I know he is working on getting all the information. Still need to wait to see if I have a COLLISION TUMOR!!!!!!!

Next week is spa day on Wednesday. I imagine we will finally discuss my crazy scan. As treatment progresses, I feel less myself. To say it bluntly, I’ve been a piece of crap all week long. Tired, more tummy cramps than usual, tired, tingles, tired, tired, tired. I got my first Shamrock shake!!!! I took one sip and felt the pins in my throat from the cold sensitivity. I drank it anyways. About an hour later I threw up. I’ve thrown up worse things! It was great second time around! Ewww, sorry. I know I should not complain. I know so many other warriors are experiencing so much worse than me. I’ll be OKAY. The worst part is learning that my body cannot do what I want it to do some days. That is a tough reality.

Yesterday, sister Beth did it again. She cannot stop researching on my behalf. I love you Beth. You are amazing and my appreciation for your efforts on my behalf cannot be measured! Back story: Starting last summer I started getting bumps on my legs. They are like mosquito bites but can be as big as a grape. They don’t itch. They are just tender to the touch. They come an then go away in a few weeks. Then another comes and it goes away in a few weeks. I still have them coming and going! All on my legs below the knee. I asked my doctor what they were. Head scratch. Sent me to dermatology. Went to derm, head scratch. Take this steroid ointment and lets follow up in a month. No concerns of cancer but I don’t know what it is. At the time of follow up, bumps still there. More head scratching. Another follow up scheduled. No. Clue. Since then for kicks I’ve asked every single Doctor I’ve seen what they think they are. I’ve seen a lot of doctors if you consider my ER visits and stays in the hospital. Every single doctor has the same reaction. They touch it. Run their fingers over it. Look up at the ceiling with a puzzled expression and shrug their shoulders. It’s become a joke with me. Now when I meet a new doctor I say, bet you don’t know what these are! They don’t.

Lovely sister Beth knows.

They are caused from this damn cancer! I’m not going to get the terminology right but basically, they are caused by the release of what is called “lipase” by my pancreas (I think)…it’s coming from somewhere. Lipase and I do not have a good relationship. Normal range is 0-75ish. My level is at 8,500. They are using my lipase tests as a marker to see if the chemo is helping. Mystery solved. Thanks Beth. I love you!

Why did not one doctor take the time to help me? Countless doctors looked at it. Shrugged their shoulders and walked away. This was yet another indication of my disease back last summer. Maybe the cancer wasn’t in my vein last summer!! If one doctor could have taken the time to put all the pieces together I would be in a better situation with earlier intervention. I feel bad that I’m looking back. I promised myself early on I wouldn’t do that. We can’t change anything. But now it’s a matter of trust. How can I trust any doctor with my LIFE? My oncologist told me straight up that even if I do have a COLLISION tumor, she wouldn’t know what to do with the results because it’s so rare. It’s a hopeless feeling. I’m very disheartened and beyond upset. I have to get past this! Pronto!!

God is behind me. I can trust. I can love. I have faith. I know with all my heart that God is guiding me to where I need to go. Upstairs or down here. Nothing else matters. Sometimes I get so wrapped up into my situation and I forget about God. (I’m sorry, God). But it’s true! I am completely distracted and overwhelmed by this world and this situation! But then like a shooting star, my God is there to guide me. Thank you. I don’t know what I’d do without my faith in you.

Love and warm thoughts to each and every one of you! Cheers to a wonderful week ahead!

HEALTH UPDATE: Another big week ahead. Meeting with Integrated Health on Monday for information on healing hands and massage therapy. Sounds fun. Tuesday is a big day. Crazy scan at 1 pm along with MRI. This specialty scan (crazy scan) will tell us if I indeed have the COLLISION tumor (more specifically, the neuroendocrine tumor) that Dr. Evan suspects. Friday I will be visiting the Genetic counselor for more tests and information about my mutations. Please pray that the BRCA II mutation is in my tumor only. If it is in my blood my dear siblings will need to be tested as well as their children. Science is amazing. I just hope there are no additional worries ahead.

Chemo treatment #5 was completed last week on Wednesday without a hitch. It wiped me out completely. Chemo day is a day long adventure with labs, appointments and drug infusions. Lots and lots of drugs. By the time I’m done, I’m ready for bed. The cool news? I wake up fresh as a daisy! I’ve been more sleepy this time around but seriously! Still feeling pretty darn good!

As I mentioned in my last update, my oncologist would really like to start immunotherapy. They need to know for sure if the current chemo plan is working or not. Right now the plan will be to retest my Lipase which is a marker that indicates if chemo is working from that prospective. They did not test me for this along the way so we will test again on my next chemo day 2/26 and see where we are at compared to my test from last week. We need a clear picture of the numbers before and after another round of chemo. If my numbers go up (chemo not working) we will most certainly get the trial of immunotherapy going. The scary part of this for me is that I cannot have any treatment for 30 days before the trial starts. I need to be “clean”. I don’t want to be clean! I want to be full of poison to keep the monster at bay! Dear Lord. Please help me to roll with this. Help me to trust. Help me to be strong and fill my worried mind with peace and calm. Please keep my faith intact. I trust your plan. Amen.

Ramblings…

Ummmm….I’m a little at a loss today. I’m feeling guarded and not sure what to say. That’s weird. Do I want to let out my thoughts today? Well I started it now so let’s go. I’m nervous. Waiting. More tests. More uncertainty. Coming off our tour of no miracle cures, it’s wearing on me. It’s different than the black inverted tornado in the floor. It’s not depression. It’s more like, someone please tell me where this is all going. I can’t take the not knowing. I’m impatient. It’s almost forcing me to live like there is no tomorrow. It’s hard not to think that way! I want to be positive and see a long beautiful future! I especially would like to see spring and summer. Like right now. This winter is too cold! Ha!

I can’t imagine leaving this world actually, but I know it is my reality. It is for all of us! None of us know when. But when you are staring at scans, results and the eyes of medical professionals it all changes. Your odds are different now. I’m a gambler. I love playing Texas hold em. I haven’t played in so long but I just loved playing. I’m no pro but I understood, in a general sense, the odds. I also know what a bad beat is as well as the biggest suck out against an opponent. Any card can come on the river! Any card!!! That is where I’m at. I’m ALL IN. I’m the underdog. I’ve got a nut flush draw and any heart on the river will win the hand and keep me in the game. I’ve got outs. Heart, heart, HEART!!!!!!

This poker analogy is dedicated to my dear and most lovely (inside and out) friend Pam that I met playing poker. You have been there for me through all of this and I love you so much.

Although I know I sound dire sometimes, my inner self is also filled with hope, calm and appreciation for all the good in my life. I think it’s just been overruled by the anticipation of the developments yet to come. I know this temporary takeover will once again change for the better. Fight, fight, FIGHT!

Love and happiness to you all!!!