Treatment Today

After my last tough treatment I was vigilant today looking for any potential problems. I got up early, took a shower, had breakfast, did dishes, carried in 80 pounds of stove pellets and loaded them in the stove. Then I fed the dog, took the garbage out and laid out all of needles and drugs for treatment. Then I took round 1 of my pre drugs, did my lung testing, my oxygenation testing , my blood sugar testing and then my blood pressure testing and took round 2 of my pre treatment drugs. And then it was time to wait for the pokenator to come and stick the needles in.

Before I knew it I was laying on my bed and she was placing the needles that the gamma globulin would flow through for the next few hours. She checked the hole on my hip which is still healing from a site reaction I had in August and treated it and bandaged up up as well. Once everything was placed and the drugs were dripping in I gave her a big hug and headed to bed. In an hour I was coughing so I used my rescue inhaler. By the time I hit the mid way point I was wheezing like a pug dog. So I did two back to back duo neb treatments, loaded the second syringe in the pump and then headed back to bed. Where I dozed off and on for the next couple of hours.

I woke up wheezing as treatment was winding up, so I went and did another back to back duo neb treatment, which helped a lot. Caro was soon there to pull the needles and then say you are swollen and red. It is time to draw circles and see if it gets bigger or smaller. So for the next 15 minutes she drew pictures and watched what was going on. With a smile she said she would be back in a while to seem what they were doing ... Me I just crawled back in bed.

But the swelling was down when she came to check, which was very good news. So now it is almost 12 hours past treatment and I am ready for bed. Grateful that it went better than it did last time, but still a little concerned about the wheezing ...I would like to get that solved for sure before the next treatment.

Well ... That gives me two days ....

Connie

Sick, Sick

I had a Fire Department function today. Our local radio station KYLC brought in an incredible catered meal  to thank us for our work on the wild land fires this summer. Amazing barbecues! However, I was feeling pretty shaky when I got there. I tested my blood sugar, which was way high and then treated it, fully expecting to begin to feel better. But instead I was feeling worse and worse. So I gulped down my anti nausea meds and headed home where I proceeded to get sicker and sicker.

I could not stop throwing up. This seems to happen every few weeks on a Saturday and I have not figured it out. But I have decided to track it and see if I can find any patterns in this. I know that I would very much like to not repeat this misery any time soon.

I sooooo want to move to the other treatment ... It cannot be worse than this.

Just Connie

Surgeon's Visit

Yesterday I made the long trek to OHSU to meet with the surgeon about the mass on my pancreas. I was blessed to be driven by my good friends and we picked up my mother on the way. We got to pick up mom at my Aunt's house. It was so good to see her and it had been so long since I had been at her place. It did my heart good to be able to spend some time with her before we headed to the hospital.

We got there with time to spare so we atually we able to have some lunch together before we headed up to see the surgeon. I love spending time with go my mother and Carolyn so there was lots of laughter and fun.

I liked the surgeon a lot. And even better he did not feel that I needed to rush into surgery. I got s fur month reprieve. In four months I will go in for another endoscopy ultra sound to see if there has been any change in the mass. If there has not been then I will repeat in another four months.

So for now I can take a deep breath, work on getting my lung and immune system stronger. It is good to be able to put this aside for a few months and concentrate on the others for a while.

Now I just need insurance approval for the change in treatment and things will be great!

Just Connie

The Hunt for Gold

I did something today I have not done in a couple of years. I woke up to a glorious fall day, bright,sunny and cool. I knew I had to get my Sunday School lesson done and things prepared and laid out for Board meeting. So I headed to the church bright and early and got all my work done and then ... I headed up Gold Creek Road to meet up with my friend Dan.

I loaded Hope Puppy into the back of Dan's truck and we headed out mushroom hunting. It felt so good to be out in the woods again. I have really missed the hunt for gold, though my neighbor Phil has been good about keeping me supplied. But there is nothing like being out in the woods and letting the glory of God's creation fill your soul and wash all the yuck out.

So even though I only came back with 5 mushrooms, I came back filled with life. So very grateful for this beautiful place I live. So thankful for wonderful friends who help to get me outside and are willing to share their life and live with me,

I feel very blessed ..

Just Connie

Sick and Ick

I love it when the Fre Methodist Pastors get together. I love being with them, hearing about their ministries and being challenged by them. Today we got together to be stretched in some new ways. It was good, it would have been wonderful if I had been feeling better. However, I was struggling with treatment side effects from yesterday. Migraine, nausea, intestinal stuff ... And it just got worse as the day went on. By three I was a miserable lump in the lobby. Luckily my ride came and got me and took me home. Where I have spent the evening trying to just survive.

I will be so glad when treatment has changed and this will not be every single week. I am looking forward to getting some of my life back! Things like today's conference ... Imagine going somewhere and not getting sick!

I am pretty sure I could get used to that ....

Just Connie

steppin Out in Hope, Faith and Life

I got news from my  pulmunologist of Friday that was fairly overwhelming. One of the things I live about him is that he is very, very honest with me at all times. I gave needed that as I have maneuvered through the health care crisis. I am blessed by the doctors who are fighting for me to get better. I think my heart break came when I discovered I was actually much worse than I thought I was.

My pulmunologist called the surgeon who did the biopsy and spoke to him at great length, he called the pathologist and he called the surgeon all just outside of the room I was waiting in. So I got a lot of information I did not have, but I did need to know. They are not sure I am strong enough to tolerate surgery. That surprised me, but I got a better handle on why it needed to come out. It is a ticking time bomb and will not end well if it is left in.

The bottom line is that I am very ill and that is hard for me to wrap my arms around, my pulmunologist caught me crying and I have never done that before. He felt awful ... But yet I needed to know. And I know that crying Is part of processing it.

I need to embrace this new reality, learn from it, see what God says and keep fighting. My Adria's not given up, so why should I. I choose to live in Hope. I choose to live in the reality of Gods love and presence. I choose peace, life and the reality of living in Christ! I know there are good things ahead. God shows me over and over again.

Stepping out in faith, hope and life,

Just Connie

Family Thoughts

Family has always been very important to me. Living here in Willamina, I do not get to see my family very often. But today in spite of all the lung stuff going on, I packed up Hope Puppy, presents and decorations and headed to Burlington to celebrate the soon to be here 1st grand daughter of mine... Paisley.

My family out did themselves and showed up to celebrate, with food and gifts and love and laughter. I was so glad to be in the midst of my family, to see all my great nieces and nephews, to talk to little Paisley who is still hanging out in momma's tummy ... It was a joy and delight.

I am so hopeful that the new form of gamma globulin treatment will allow me to spend more time with my family and with my grand children. In fact I have to say that the chance to spend time with my family makes fighting to get better a very good idea.

Yep definitely worth it ....

Just Connie

Still Fighting

Over the past couple of years I have received all kinds of bad news about my health. Most of the time I am able to acknowledge the news and move ahead. But yesterday, yesterday I had a major melt down. I am not sure why it hit me so hard, but it did. Even my pulmunologist caught me brushing tears away and apologized. But it was not his fault, I am always thankful for his honesty. I always know exactly where I stand and do not have to guess with him.

However, it seems that my perception of where I am and his were different. I needed to know that, though I do not like it. I need to acknowledge it, embrace it and then I need to keep fighting. I cannot let despair rob me of today's joy. There is still a lot of life to live, a lot of things to learn and a lot of people to love. I refuse to live life as a "short timer".

There are good things ahead and With God's help I am willing to fight for them.

Just Connie

treatment Journey

Treatment today ... I am groggy,  nauseous, blood pressure high and so ready to be done with thi for a few days. I know that people have trouble understanding the complexities of the gamma globulin. But I am so hopeful that in a month things will be changing for me. The possibility of going to IVIG instead of sub cue  would give life back. I could plan vacations, I could go and see my daughter. I could do things and that is pretty exciting.

Of course I still have to wade through all the pancreas stuff and I know that is major surgery and potential treatments on top of that. I also will have the ongoing Nucala treatment for my lungs. And all of my specialists who have gotten me this far. My family Dr, my pulmunologist, my ENT, my immunologist, my gasteroenterologist, my oncologist, and of course the surgeon who is looking to take the mass out.

That is a lot of Dr's with their finger in the pie. I am thankful for every single one of them. I feel like I have a great team to move ahead with. And the actually play nice with each other.

So for now I am working on bringing my lungs back to normal and to begin to step down on the massive steroids. We will see, At least I will keep working on it.

And tomorrow I see the pulmunologist to see where I am in this mess. Still believing in good things ahead! Still believing I have things to learn on this journey. I am just very grateful for some addition time to journey and learn.

Just Connie

A Jouney Begins With a Single Step

A journey begins with a single step ... But sometimes we do not relate understand where the path is going to lead. That has been true of the convoluted path I have been on for the past year. Sometimes I feel like I am holding on tight to Mr Toads wild ride. Other times it feels as if I am swinging through open meadows of beauty.

Yesterday was more of Mr Toad's wild ride. I reported to the dermatologist bright and early to have her take a look at the spot I had on my hip that was not healing. It was a left over from a site reaction from 7 weeks ago . So she did what my family doctor told me she would probably do ... She cut it out. I have to say that is a bit counter intuitive to me. You have a big hole that won't heal so you make a bigger hole to fix it. But I go in next week and she will measure it and make sure it is beginning to heal.

From there I took my numb backside to make a run to the party store, stopped a cross walk for a pedestrian and as I sat there heard screeching brakes. Looked in my rear view mirror and saw the little white truck coming up fast behind me.... And sure enough he smashed right into the back of me. I was somehow able to not hit the poor pedestrian, when I heard the truck coming, I jammed my foot down on the brakes. But all in all, we came out it well. My car seems to have no damage, they will check tomorrow. The truck that hit me is a mess . He hit my spare tire on the back and peeled his hood and bumper back. Looks like a total loss. He was a very nice man.

 After I got that wrapped up , I headed back to the doctors office to see my immunologist, where for the first time I heard news that I actually wanted to hear. He wants to move me to IVIG gamma globulin treatment. It means once a week instead of twice a week. And even though you usually get sicker, it is once a month and not every single week. I am very excited about what this will mean for my life. I will have time to do things besides treatment.

One of the first things I will do, is visit my daughter and her family.bibwill take my grandson to the zoo ... I will hike and plan vacations .... Live life that is not wrapped around my neck all issues!

And yes I realize that the mass on my pancreas can really change things, but it is still just one step ahead. I can do that .., even while I am doing the happy dance. Who wants to come and dance with me?

Just Connie

More Journey Ahead

Well, life often is unpredictable and I have been reminded of that this week. I got a call from the Dr at OHSU who did my pancreas biopsy. The cyst he biopsied was benign. However, behind the cyst was a tumor he was not able to biopsy. He said he was very concerned at how that tumor looked and he is referring me asap to a surgeon. The surgeon called today and I have a consultation appointment with him November 1st.

I am a bit surprised to be back on the roller coaster I just got off of. And it was certainly not the news I was expecting at all. But my surprise does not change the reality. So, I will just take another step forward and trust God to walk me through this. I am confident that there are good things ahead and still a lot for me to learn as I continue on this journey.

I also believe that God will bring me support, new friends and incredible blessings that would not have been possible without the journey.m

So I am trusting, and believing and choosing joy. It is a great way to journey on.

Just Connie

Biopsy Results

I sat there in disbelief as the onocologist who is treating my lungs said, "I called up to OHSU and got your biopsy results. They were benign." First I was stunned that he had gotten the results and secondly I was stunned that the biopsy was benign! It was all I could do to not jump up and kiss the poor man. He was pretty happy too and stated that it was good to give news for a change.

Of course I do not know yet, what kind of follow up they will recommend for the mass in my pancreas. They could decide to watch and wait, or take it out or something that I am not even aware of. But the bottom line is that the biopsy showed no cancer cells. Of course my onocologist had to give me the talk that the needle biopsy doesn't test every cell in the mass and there could be cancer cells in another part of the mass. But what I hear is that the biopsy was good and no cancer was detected.

As I have been thinking about why I am so very surprised, grateful but surprised it dawned on me that the surgeon had a lot to do with it. He was pretty upbeat before the biopsy procedure and kind of grim afterwards, talking about how they could take it out and what potential treatment options I had. He gave me the strong impression that he did not like what he had seen.

I will look forward to getting more information from him tomorrow and beginning to make plans for the future again. I had not realized how much of a holding pattern I was in as I waited for these results.

So, tonight I am doing a happy dance. Glad to look ahead with some certainty and much joy. This is feeling pretty good ....

Just Connie

Juggling Balls

Sometimes life gets full of stuff. I am feeling that way, there is just a lot of stuff coming at me, a lot of balls that I am juggling right now.

My health is part of it. I continue to fight for antibodies so I can fight infections. The treatments are time consuming (2 entire days gone) and make me pretty sick. The infections crash my lungs and I am struggling to keep my asthma under control. Spending 5 hours in the ER a couple of days ago for my lungs reminded me that things can change very quickly. And of course there is the mass in my pancreas. All three of those things by themselves would be a lot ...taken together  it is massive. And I work really hard that my life not be all about my illness.

There is my ministry which I love and it gives me life. I have the best job in the world! But suddenly I have less time to do it in. There are things I have to let go of that I did not want to say goodbye to ... But there was just no time. And the church is in a building phase. We need to envision a new future and that takes time and energy as well. There is also my work at the Fire Station which also gives me life and joy. Because of my treatment schedule I miss most of the drills and often can't respond to calls and am forced to send someone else.

There is the house, which needs work. I really needed to get the house painted this summer and it just didn't happen. I have rooms which need to be painted, projects that need to be finished and I need time and energy to do that.

All of those represent a lot of balls that are sometimes in the air and sometimes crashing down around me. And yet ..... I choose peace and joy. In spite of the problems and challenges, I want to live in peace and joy. And I believe that is not dependent on my circumstances, but it is something I choose.

And it is a choice that I have to make every day ....

Just Connie

Today

I am a couple of days past the biopsy on my pancreas and doing better. Yesterday was rather miserable as my lungs decided they were not happy. My pulmunologist sent me to the ER to make sure that I had not aspirated anything during the procedure. My lungs looked good except the bottom part of my lobes were not inflating. So they gave me a couple of breathing treatments and after 4 hours let me go home.

I have spent today resting and watching movies which is a pretty rare occurrence for me. Tomorrow will be very busy and I want to be well rested for it. I am teaching Sunday School, preaching and have a 2:00 funeral to do. So it will be a very busy day.

It is good to be feeling better and I look forward to what tomorrow will bring.

Just Connie

Treatment Day Thoughts

Treatment Day! I popped out of bed at 6am to begin my first round of pretreatment drugs. From there it was shower, dress and take my normal morning medications. And then a quick breakfast, check in with my parents to let them know I am alive and well and then time for the second round of pre treatment meds. Then it was time for pre treatment blood glucose, blood pressure and breathing treatment. And  by then the "pokenator" was pulling into the driveway to set my needles for me.

Everything went well as the pump slowly pushed the drugs into my body over the next three hours or so. As usual, I fielded counseling calls, questions, Dr's offices and so on during the process. One of the calls was to tell me that my pancreas biopsy is scheduled for next Thursday at OHSU. It will be very good to get that behind me. Another call was from my immunologist to let me know that my antibody levels had finally crawled above the bottom range of normal. He is going to watch over the next couple of months and see if I can maintain or even grow a bit more in this dosage. I am very relieved to not be increasing the gamma globulin this month.

So here I am tonight, treatment done, nauseous, migraine but some answers laying ahead for next week. I am tired and groggy and ready to call it a night. But thankful for answered prayer and for everyone who has been lifting me to the Lord.

I continue to believe there are great and wonderful things lying in store for me. I just have to keep on the journey ....

Just Connie

A Worthwhile Day

Spent the day at the Fire Station today. We are hiring three new people. The candidates rotate through different Tatiana that test them on EMS skills, fire skills, group interview, physical ability and conflict resolution. My job is is always to be the crazy person in the conflict resolution scenario. I always enjoy it and it can get pretty funny.

It is an honor to be part of the process that is building our team of firefighters and paramedics. These are such outstanding and incredible people. Then there are all of the area fire chiefs who come to help man the testing stations and it is a chance to get to know them as well.i

It was a good day of ministering outside the walls of the church. I am grateful for the wide variety of doors that God has opened up for me. I really think that days like this help keep me fresh and alive. It is good to be out with people, to feel fairly good an to know that you are doing something worthwhile.


Just Connie

Hurry and wait and People have no idea

I am till waiting to hear from the OHSU surgical team. It seems the head urge on was out of thoffice last week so they were supposed to call me today .. . no call. So my day went on. I went to 5:30 am yoga class, then drove to the hospital in McMinnville for immune panel blood draw. Then I took my first round of pre medications and grabbed breakfast to eat in the car on the way home. I got home in time to lay the meds out, take the 2nd round of pre drugs and make a call to the pharmaceutical company that provides the gamma globulin so the next months worth of meds could be shipped out tomorrow. Then I made a very painful  and difficult text message, which got back a heep of flaming arrows at me. There are those people that you cannot disagree with, with out them going for your throat. It is a very sad thing.

By then it was time for my pre  treatment breathing treatments and by then the pokenator was there to place the needles for me. Once everything was ready taped in and secure, the line checked for blood it was time to turn the pump  on and let it slowly pump the gamma globulin into my body. That also meant it was time for round number three of pre drugs which help combat the treatment migraine I get. I crawled into bed waved goodbye to the pokenator and read and dozed until the first  syringe was empty.

By now my head was pounding , I was nauseous and I plugged the next syringe into the pump and began that as I took the first round of mid treatment drugs and checked my blood pressure. But finally it was finished and I could call the pokenator to come back and de needle me. Only one site had a small reaction today. So much better than last week.

Then it was time to see if I could keep some food down and head back to bed to sleep come of drugs out of my system.

Besides treatment, I handled 2 counseling phone calls, a question for one of the properties we have for sale, text messages to my doctors and of course waiting for OHSU to call.

Not that untypical for treatment other than the extra blood draw. Which I am praying is going to be showing some bigger numbers .. Please! Right now I find myself groggy, exhausted and still have  1 more round of post drugs and then my nightly meds. I also got the news that I am to be on night time oxygen every night. That was really disappointing to me. But I will be a compliant patient  and do what needs to be done.

I am still finding my way through the path. At time the road is bumpy, hurtful  and emotional. Some times there are even rocks thrown at me as I trudge along. But the amazing thing is, that God brings me through and though the "slings and arrows might hurt me" they cannot detroy me. God has my back and I I have incredible prayer support. I know he will meet every need. Abundantly, wonderfully, lovingly and in amazing ways.

Who knows what lies around the corner?

Just Connie

Waiting for the Call

I am still waiting for for the call from OHSU to set my initial consultation and MRI. They told me Friday they would call me early in the week and get it scheduled. It is now Thursday and I have heard nothing from them. I put a call into my pulmunologist yesterday to let him know that I had not heard from them.

I am so hoping we can get the initial appts set up, so I can move ahead in this process. I know that the church will feel better when they see some answers and I would certainly like to get through this diagnosistic phase as well.

Soooo, I am trying to stay busy today which has been challenging since I spent the night throwing up. But I am planning on having lunch with a friend and perhaps take a walk around the pond afterwards. All which will be a good break for me.

I am also preparing my Sunday School lesson for Sunday and getting ready to meet with th Superintndent on Sunday. And of course Bridge the Gap is Saturday where the police and Fire Department come down and let the kids climb in the equipment and get to know all of us on a one to one basis.

So lots to do while I wait ..... I wish that call would come!

Just Connie

Another Step in the Journey

The past week has been a whirlwind of hospitals, dr's and testing.  I am still processing everything and gathering information.

The good news is that my lungs looked fairly good. However, they did find that I have a yeast infection in my lungs which they are treating for the next 30 days. That was good news to me since it explained why I have not been getting better.

The flip side is that the CT scan showed a mass on the tail of my pancreas. They sent me in for a targeted contrasted CT scan of my pancreas and the DR called me on Friday. It is a growth about an inch and a quarter by three quarters of an inch. He consulted with the team up at OHSU and they have picked the team that will be working with me. It looks like the next step is the consultation, MRI and probable biopsy. I should hear from them today about when that will happen.

Soooooo, how do I feel about all of this? For the most part I have a great sense of peace. No amount of worry is going to change what is or is not there. I find that I have also been really concerned about how the people around  me accept the information. I know the knee jerk reaction people have when there is a possibility of pancreatic cancer. I want them to know that I believe that God has me in the palm of his hand and I feel his presence in such an incredible way. Regardless of what lies ahead, I know that God is big enough, powerful enough and loving enough to bring me through.

I want to continue to live a life that glorifies God, brings love into people's lives and is a joy to be around. And that is plenty to keep my my mind and heart occupied while I walk this journey.

Just Connnie

Lung Procedure Day

I called my favorite taxi cab driver for a ride to the Santiam hospital for my lung procedure. I always have so much fun with Ginny and she unfortunately has a lot of experience with hospitals and how things go.

So at 8am she came and picked me up and we headed to Stayton where my pulmonologist is head of pulmonology and internal medicine at the hospital. As always it is a joy to check in there. Very nice people and a very quick system. Before I knew it I was being showed to my room and they were prepping me. I of course got the gorgeous and fashionable hospital gown, booties and blue cap for my hair. Then they began what is often the big challenge, getting my IV in. They got one on the back of my hand which failed within minutes, so they headed to the opposite arm and was able to place one there. They gave me a nebulizer treatment, sprays for my sinuses nd kept getting things ready.

Soon the anesthesiologist was there and seemed a bit surprised to have been called in. I was not elderly, didn't have lung cancer and did not have a huge case of pneumonia. He explained that this procedure often does not use an anesthesiologist and general anesthesia. but also explained that my doctor had specifically requested it. (which I knew he was going to because he had told me) So I signed all the papers and soon they were wheeling me into the surgical suite.

They gave me yet more steroids, and I looked around at amazement at a room full of people. They discussed what anesthetics I would be getting and then they gave me the first does, my doctor asked me to hold up my right thumb and when I did he said give her more, that happened three more times before I was under.

The next thing I remember was waking up back in my room. I was having a neb treatment, crying and had a pounding headache. Obviously I had been awake for a while since I was holding the nebulizer but I had not memory of it at all. I felt like my body had been taken over by aliens.

Over the next couple of hours, they worked at getting my oxygen levels back up and finally around 3:30 they released for the hour long trip back home.

I am so very grateful for my friend Ginny who gave up her entire day to be with me. Thankful for the very kind nurses (and no Ginny I do not think that male nurse was flirting with me) Thankful for the skill and expertise of all the doctors who participated in the procedure.

And now I wait to hear for the results and for the cultures to grow to see what if anything needs to be treated. Glad to have this procedure behind me, especially since my lungs are telling me they are not happy with me this morning.

But I am fully expectant that there are good things ahead,

Just Connie