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

Busy Day at the Hopsital

I saw the pulmunologist today.ni have something going on with my lungs which he suspicions is Neal infection of some kind. I will have a bronchoscope on Friday and they will culture the infection to see how best to treat it. They also found some scarring and a couple of small cysts.

When I told him that I tried to hike Saturday and it was probably the hardest 7 some miles I have ever hiked, he was amazed, he told me I had more "stick to it-ness" than anyone he knew. So I guess I should perhaps stop beating myself up for being a wimp on the hike.

I explained that I had the annual church camp out this weekend. He told me that I could not go on Friday, but he would clear me to go with no restrictions from Saturday on. That made me very happy. I would not have wanted to miss the camp out two years in a row.

So I have arranged for my ride on Friday to the hospital since they will be putting me under and will try to have everything packed and ready to go by tomorrow. I also have the music and the sermon to finish up for the camp out service. And of course food to pack both for me and for the potluck.

I am looking forward to getting out there and enjoying some time relaxing in nature with friends. Not only that but it have 9 people scheduled for baptism after the service. There are some really exciting things going on during the camp out and I am very thankful to be a part of it.

It is 8pm and I have just finished up treatment. Tomorrow I will recover from the side effects and get my sermon and music done and get everything printed out and ready to go. It will be a very full day and Friday will be full as well.

I have to say that life is never dull around here. But as always God is big enough, loving enough, strong enough and wise enough to meet me right where I am. And that peace is filling my heart tonight.

So grateful for the love of God which lifts me up, heals me, comforts me and stretches me. Tonight I am singing "I will trust in you ..."


just Connie

Ouch

As a pastor, I have found over the years that we are great targets. You cannot please everyone and everyone has an opinion and usually I can let things just roll off without too much pain involved.

But today as I came into service, I knew I was struggling physically. I was very nauseous, struggling with my breathing, but ready to worship and to celebrate. I knew when I was diagnosed that there would be people who would be frightened for me, people who would be sure that they knew what I should do, how much rest I needed, etc. I have also said that when the pastor is sick the church gets twitchy. But the Church for the most part has surprised and blessed me by their love and support.

Today, some of the roosters came home to rest so to speak. I heard that there were those who feel I need to just go home, let someone else pastor and get better. What they do not understand is that first of all I am called to this church and this community. I am not only called of God, that call is recognized and affirmed by my denomination. Secondly, I will not get better if I just go home and rest. It is the opposite of what I need. Spiritually, physically and emotionally I need to answer the call of ministry, I need to push myself and keep moving ahead. Every Dr I have is in full agreement.

I was still processing the information I had been given when I got a complaint about my preaching. That one really surprised me and I have to say was really discouraging. I left the church feeling very alone and very hurt. My brain reminds me that this is a normal part of leadership, but right now my emotions are beating me up.

But the thing I know is that as I pray about it, God will let the truth rise up out of all the other stuff. So tonight I am thinking, praying and let God weigh in on everything. He is big enough for this and I am so very grateful.

Just Connie

The Hike

As I have journeyed through my health crisis over the past few years I have made several commitments. One of those commitments has been to keep moving and stay active. The doctors all say that this is the right thing to do and will not only help me in the short term but has great long term benefits for my lungs and immune system. I have also found that getting outdoors breathes life into me.

I have been struggling with lung function over the past couple weeks and have recently had to go back on night  time oxygen. But I have really been feeling the need to get outside and soak up some of Gods beautiful creation. So yesterday I packed up and went hiking with a friend to a hike I have done many times.

The air was a bit smoky from the wild fires in the Mt Jefferson Wilderness area, but I was not that concerned. I brought my inhaler and a nebulizer with me if needed. And oh my goodness ... Did I end up needing them.

I began struggling pretty early in the hike and was making frequents stops, trying to slow down my breathing and take deeper breaths. At about 3.5 miles my hiking partner looked at me and said, "You need to sit down." And it was at that point the nausea hit like a sledge hammer and right behind that came the overwhelming feeling of discouragement. Suddenly I was so done with being sick all the time, struggling with things that should be easy and sick and tired of being sick and tired.

As usual my hiking partner was wonderful, supportive and wise ... We turned around and headed back. I got to the car and did two back to back breathing treatments and began to do better. We went to dinner (which stayed down) thanks to my great anti nausea drugs and enjoyed some time poking through the shops next to the restaurant.

As I have been thinking about the hike, I am blessed by the beauty that we saw, blessed by a great friendship and realizing that I have pretty high expectations of myself. I still have this feeling that I should have been able to finish the hike I have done so many times in the past. My brain tells me that is unreasonable, but my emotions are telling me I am a wimp and I need to push harder.

So tonight I am thinking and feeling and sorting things out.....

Just Connie

The Dark Forest

I love the town I live in. I love the people, I love the culture, I love the way that they have embraced me and supported me as I have walked this journey. From flowers on my door step to a ton of stove pellets, to food that is so often dropped off for me. All of it reminding me that they love me and I am not alone. I am so very grateful for each and everyone of them.

I have been holding tight to this today because I have found that I am pretty weepy today. I know that 99% is probably the plethora of drugs running through my body since not only is today a treatment day, but my steroids have been bumped back up. But I do not like days like this when I am just curled up in a ball crying. I feel very alone, though my head reminds me that I am not. But yet the feelings persist. I am positive that it will be better tomorrow, but tonight is hard.

I am finding that so much of this journey is just toughing it out until it is better. Some days that seems easier to do than other days. Today is one of the hards ones ... But yet I know that am loved and cared for, by friends, family and most of all by God.  It is standing in the dark, believing with every fiber of my being that the light is there. I just need to take another step forward out of the dark forest.

Weeping may last for the night time, but in the morning comes joy,

Waiting for the dawn ...

Jus Connie

Blood Test News

Soooooo ..... just had a phone call from my immunologist with my latest blood test results. Instead if the hoped for and anticipated big jump in my antibody levels I only showed a 20 point increase. That means in 4 months I have only increased 44 points. The Dr is not sure why I am not increasing like I should be. He said for my weight I should have reached a therapeutic level months ago. He also said for the first time today he is not sure he can get it up to where he would like it to be.

But I do know that I am better than I was a year ago and I am having fewer infections even though I was just treated for one last week. My antibodies have gone from the 200's into the 600's so there is improvement. Just not much over the past 4 months.

So tonight I am feeling the feelings, disappointment, a bit of discouragement and of course a bit of apprehension over what the increase in treatment will do to my side effects.

However, I remain committed to the fact that this is abut the journey not the destination. I am thankful for the many, many prayers that are being lifted for me by so many people around the world. It makes an incredible difference to me and in me.

Thank you for your love, prayers and support you make a difference in my life.

Just Connie

A Good Thing

I have been reminded all to clearly this past week of the heavy toll the steroids take on my body. Because of the increase in steroids, I am back on insulin to control my blood sugar. I find myself getting very emotional which is not like me. These crying jags are very distressing to me on every level. But I am hopeful that I am beginning to adjust and some of the emotional side effects will begin to lessen.

Because the reality is that regardless of how I feel, I have work to do. I have sermons to write, people to counsel, staff to meet with, mentor meetings that need to happen and community meetings to be a part of. I also have classes to teach at the fire hall and some committee fires to put out as well. I keep pointing out to God that really and truly I do not have time to be this sick. And yet ... I am.

Yesterday, we kicked off a new Sunday School format for the month of August. The two people who are supposed to be leading it were gone ... Both of them, on the kick off day. That meant that I was in charge of getting all the adults and children together and trying to get everything done and being rather clueless about the whole thing.nAnd the entire time I was fighting nausea and intestinal issues. From there I went right into service. But I did send one of the students across the street for a diet 7-up hoping that would baby my stomach through the service. And yet service was good. I am so glad it is not dependent on me and h I feel. I made it through the sermon and everything seemed to go fine. Then I went home and was sick, sick, sick all afternoon.

Today I was feeling better, just in time for another treatment. Sigh ... It is hard to tell right now what is the treatment, what is the infection and what is attributable to the extra drugs I am taking. So I will just keep on doing what I can, take one step in from of the other and pray that all of these drugs are beginning to work. and I am praying for the time to do the work that needs to be done.

I guess anything that drives me to my knees to pray more is actually a good thing ..

Just Connie

Sick of Being Sick

When the Pulmonologist office called to tell me they were calling in an additional antibiotic, I realized that I only had a few minutes to get there before they closed for lunch. So I threw things together for a quick trip to the neighboring town to pick up the antibiotic and to pick up the insulin which I am forced to go back on because of the increase in the steroids.

The good news is that they had the insulin ready for me. The bad news was they could not get the antibiotic until Monday. The really bad news was that I found myself tearing up when she told me that. She offered to call some of the McMinnville places to see if any of them had it in stock. Albertson Pharmacy did, so I got back into my 150 degree car (because the air conditioner is not working) and headed to McMinnville. 25 minutes later I was standing at the pharmacy counter as they explained it would take them 25 minutes to fill the order. I staggered to the nearest chair, put my sunglasses on and cried. I felt like an absolute idiot, but there I was at Albertsons crying.

When they finally called for my name, took all of my insurance information and gave me the antibiotics I headed to the car before I could socially embarrass myself any more than I already had. I got back into the 150 degree car and headed home.

So now I have the drugs that will get me through the weekend. Hopefully getting my blood sugar and the infection under control with help with my rollercoaster of emotions. I am just so sick of being sick today. All of this seems way too familiar. And yes I remember that all my doctors told me I was not done with infections and they would come back ... but I was so hopeful they were wrong or at least there would be a longer break than I have had. I also realize that I am tired and I am sick. And emotions are effected by our bodies and the drugs we pour into them. It is just not like me to feel sooooo ... well overwhelmed with everything and so grieved at the things I have not been able to do this past week. Things that not only were important to me, but important to others as well. I feel like I have let them down.

So tonight I am taking my meds, rehydrating and going to try to get some good sleep. I am also looking for the Comforter and will try to attune myself for what God wants to say to my hurting heart.

Just Connie

Rest and Come To Me

Been down with a flu bug for a couple days. I thought I was doing somewhat better until I started throwing up this morning. Unfortunately that included my first round of pre meds for treatment.

But I kept moving through it and took round number two of the pre meds at the appropriate time when whispering prayers to please, please stop the throwing up.

My friend came to help me set the needles and I could tell I was tired, shaky and a bit dehydrated. But somehow all the pieces were put together and the needles were ready. Laying down on the bed, my friend Carolyn, carefully placed the needles and taped everything down. I put the 1st of two syringes in the pump started the pump.

As I was heading to bed to rest for the next 3 hours my pulmonologist called. My family Dr had asked me to contact him when he realized I had a flu bug and my lungs were down. His instructions to me were to go back to 40 MG prednisone for 6 days, 20 MG prednisone for 6 days and then hopefully back to 10 mg. He also reminded me to take my Zofran for the vomiting and stay hydrated which is very challenging when you are throwing up.

I am discouraged today, feel like I am going backward in my fight to get off steroids. And I am still feeling miserable today both from treatment and the flu bug.

I acknowledge that how we feel physically effects our emotions. .. even realizing that I just want to lay my head down and cry.

But I believe God has surrounded me with the best Dr's and incredible family and friends who are loving me and praying for me. That is a precious gift as I continue on this journey.

Tonight I am tired, thankful but tired... and God is whispering in my ear "that is okay. Rest and come to Me.

Just Connie

Chemo Friend

I sighed as I followed the nurse into the chemo lab. For the next hour I would receive my drugs and then wait to make sure there are no complications. As I walked into the room however, I,was surprised to see my friend Dwight who I met as we were getting our very first treatments. There was a chair open next to him so I sat down with a smile as I greeted him.

Over then next hour we talked and laughed and I heard a bit about his life and work. I told him a bit about what I was facing. We talked and laughed and found many points of common interests. The time just flew by so fast.

I found myself leaving treatment that day with a big smile on my face. It had been so wonderful to spend that time with him. I found myself thanking God as I walked out for weaving our lives together.

I find those blessings come at the most unexpected times and I am truly grateful for how it enriches my life, brings me encouragement and reminds me that I am loved. Because that can be hard to hang onto through this process. There is so much that is discouraging, painful and kind of yucky that it came seem that is what life is all about.

But God continues to show me, that life is rich and full and I am surrounded by people who love me. The joy that brings strengthens me as I continue this journey. There are good things ahead and I am confident that Dwight at the chemo lab will not be the only surprise friend I am given as I continue to move ahead.

And that makes my heart very happy!

Just Connie

Too Much

I sighed as I put my phone down. It was the Drs office asking me to come in and talk to the Dr about my blood test results. "That can't be good" I thought as I began to think over what might have been flagged this time. Realizing that was an endless pit of questions, I pushed the thoughts to the background until I could see him the next day.

All too soon I was sitting across from my primary care Dr who is also my good friend. He pulled out a copy of my latest blood work and then a copy of my blood work from April and May. He pointed out that there has been a steady increase in my white cell count even though the decreasing steroids should be decreasing my white cell count as well. We did some on line research together and then decided I would touch bases with my immunologist and my hematologist to see if the Nucala treatment could be increasing my white cell count.

I came home tired,  nauseous (it is the day after treatment) and discouraged. I try to take things as they come, to embrace my reality. But tonight I find that I am tired of facing yet another problem. I have a feeling some of what I am feeling emotionally might be a response to what is happening physically. But yet here it is .... I am discouraged.

So I will do my best to look beyond what I am feeling, to trust in God's love and his presence. There will be joy to be found as I continue this journey. Tomorrow is another day.

Just Connie

Reality

The reality of the increased treatments have been that I have struggled a bit more with lingering side effects. But overall I thought I had been coping fairly well. I thought that right up until Friday night.

I had a good friend take me out to dinner at a Mexican restaurant that I like in McMinnville. Things were going great right up until the time I got sick during dinner. But still I thought I had it handled and would be able to get home without admitting that I was sick. We were on the way home, when I knew I was not going to make it home. I was able to choke out, "I think you better pull over, I am going to be sick". You really find out who your friends are when there is throwing up involved. He was amazingly kind and considerate. I got to laughing because it suddenly seemed so silly. I told him that he could tell everyone that I couldn't hold my liquor! We both laughed, he bought me diet 7-up, handed me a bag to throw up in and we headed back home.

I was able to get all the way home without socially embarrassing myself anymore than I already had and without decorating the inside of his new car. (Thank you God). As I have reflected on that evening several things stick out to me. First of all, I am very thankful for the compassion and kindness of friends. I would never make it through treatment with it. Secondly, I am very thankful for laughter. I know I could not do this without it. It raises my spirits, helps put things in perspective and brings such joy in this journey. Thirdly, I am very thankful for the drugs that help me cope with the side effects and for Drs who have made it a priority to keep me as side effect free as possible.

Laughter and thankfulness is a pretty good combination.

Just Connie

Long Day

It was treatment day and I was in a groggy drug haze when the phone call came in. "What Do you mean there is someone living in our church rental house? The renter moved out several months ago" But as my groggy brain finally processed the information I realized that a squatter had moved into the house the church had been willed. The house that is an hour away from Willamina. After many conversations with the police they were finally able to go over and give her 24 hours to vacate the premises or she would be arrested for breaking and entering. It was a relief when the police got back to me the next day to let me know she was gone.

So today my neighbor Phil went with me to help me secure the house, board over the broken window (where the squatter had gotten in) I bribed him with Abbeys pizza, always a good bribe!

When we walked into the house I was stunned, there was a couch a dining room table, dishes, pictures, a dresser, clothing, decor items and even a coffee table. How did one lady without a car get all of that stuff in there within a couple of days? Well it seems she did it with a shopping cart! I began to drag her things out of the house and stack them on the front lawn so she could come and get it. And sure enough she came with her shopping cart and began to take them back to her apartment several blocks away. While I worked on emptying the house, Phil boarded up the broken window and checked for other vulnerable spots.

But finally the house had been emptied and the place secured and we ended up at Abbeys Pizza as promised. We then took the hour car ride home. I was tired, sweaty and absolutely done in when I pulled into the garage. But what greeted me in the garage was even a bigger shock that the church rental house. Someone had delivered a ton of stove pellets while I was gone! I sat there and cried!

I am so amazed and overwhelmed by the love and generosity of this community. I have no idea who did this incredible gift. But I am so grateful! And it humbles me. I do not feel like I deserve that kind of love, but yet there it is. What an amazing encouragement.

This is a great way to end a long day ..l with love and encouragement.

Just Connie

Today's Treatment

Sometimes treatment goes well, but the side effects hit a little harder. Today was one of those days. The treatment went off without complications other than my team was over 30 minutes late. So my meds were a bit off but not too bad.

I dozed and read until the pump clucked off a couple of hours later. I got up, took the empty syringe out of the pump and put the next one in. Then headed back to bed. By then I was feeling pretty queasy and my head was pounding. I took my nex round of mid treatment drugs to try to calm everything down. When the pump clicked off in a little over an hour, I texted my friend Carolyn who wanted to come and take the needles out and assess how things were looking.

She came over, removed the needles, disinfected everything and bandaged me up. I sat up and gave her a big hug and that is when I started crying. I have no idea why, I just did. I think sometimes the drugs and the treatments hijack my body. I couldn't believe I was crying. But Carolyn being Carolyn it just did not phase her at all. Of course I tried to joke it off, but she knew and she gave me an even bigger hug.

So right now I am feeling weak, shaky, my blood pressure is high and I can feel treats lurking under the surface. I do not think anything is wrong ... I just think it is reaction to everything going on.

Tomorrow will be better and I will gave trouble figuring out why I was so upset .... But at least treatment is done for this week. I have 4 days to recoup and recover. And then I will hit it again. I keep reminding myself that every drop of this is saving my life.

I continue to choose life ...  I Can do this ... I can do this ....

Just Conne

Squatters

Last year we were willed a house in  Newberg which is about 45 minutes away from Willamina. My neighbor Phil stopped by there today to take  care of the overgrown lawn. But while he was,there he made a disturbing discovery. One of the back windows had been broken out and someone,had moved in to our house that we are preparing to put on the market.

Phil called me to find out what I wanted home to do. I told him to call 911 and report a break in. The police were not very excited about coming out and asking her to leave. The said chasing off squatters are not really our "thing" I could not believe that someone coule break into you house and you did not have many options other than to start a formal eviction process for someone that was. Never a renter!

I finally had a very nice officer call me and asked me what I would like to. I told him that the bottom line is that we need her out. So he told her that she had until tomorrow afternoon to remove herself and all of her things or she would be arrested for breaking and entering. I was so relieved which was rather challenging since I was so filled with treatment drugs that I was not sure I could even hold a conversation well.

But somehow it all got down and if I need I will head to Newberg tomorrow to get the house squared around with  the police. I am very thankful that Phil discovered it today and that we were able to find a policeman who was actually helpful.

And all of this happen on a treatment day.... I don't have the emotional resources. Or the clear mind to deal with this kind of stuff on treatment days. But so glad that it seems to be working.

I wonder what tomorrow will bring..... Uhmmmm

Just Connie

Sick and Tired

Today I am tired of being sick. I realize that does not change my reality at all, but I am sick and tired of being sick and tired. Today has not been the peaceful treatment I strive towards.

It started before 5 when some,raging side effects of treatments and srugs gad me scrambling for the bathroom. By 5:30 it was evident that I was not going to make my 6am yoga class which is the very best start to a treatment day. And that class is taught my my wonderful friend and primary care doctor. I knew I wouldn't get away with just telling him it looked like I would unable to come to class when I texted him. Sure enough I got the response, "What is going on?" So I had to tell him which side effects were keeping me home and whether I was working on staying hydrated. But it is one of the reasons I love him, he cares about me and cares about how I am journeying through these deep waters.

When things were not letting up in the next hour then I had to contact the Chamber of Commerce and tell them I would miss that as well. I love this group of people, their love and commitment to this community is absolute and their love of me is a high point of my week. They of course show that love by teasing me without mercy and always being available to help me when needed.

Then I had to call my medic who was going to help place the needles and adjust that time so I coul start the first of the pre meds. She came, she saw, she conquered and poked me full of holes. I took round three of the medications and headed to bed. There as the arm got overly saturated things began to leak. The gamma globulin is very thick and very sticky. It is not what you want all over your bedding.mso I got up clipped off the two lines that were leaking, cleaned my bed as best I could at that point and drifted back to sleep. Only to wake up to more leaking and by then the pump was empty. So I called my medic and she came up and deneedled me while needling me about the leaking. She is most definitely that kind of friend, one who speaks my love language of teasing.

We talked about next week's treatment which will have a large increase and I am glad we will be looking for a new site since it is already too much fluid for my poor arms. She waved goodbye and headed back to work and I took the next round of meds and headed to bed.

By now I was nauseous, had a migraine, my arm was throbbing and to be honest I just wanted to curl up and have my mommy there to remind me that everything was okay. So all afternoon I have dozed and read and dealt with the side effects the best I could. I logged the treatment and the treatment side effects and headed back to bed.

It was on my way back to bed that it dawned on me, I am sick of being sick and tired. I am tired of missing parts of my life that are important to me, tired of how exhausted I am, of the drugs, of the side effects, of everything. I know that sounds childish and harsh, but that is where I am standing tonight.

So I am reminding myself that this treatment is saving my life. Every drop that goes in increases the possibility of building my antibodies up to a therapeutic level. This is a positive, not a negative. And yet I find that tonight I am sad, I am grieving for the life that has been lost, even though I am working hard to embrace my new reality. I still grieve the process that is so harsh and damaging.

I have a feeling that much of the emotion I am feeling is the multitude of drugs they are pumping into my body today. So I will try hard to not camp in this sad place tonight but to focus on what is pure, and true and lovely.

I think that is a much better plan...God is still God and God still loves me! I guess it does not get better than that!

Just Connie

Vacation Thoughts

About 4 months ago, my adventure buddy and I booked 4 days up in Banff cAnada. It is a place I have always wanted to spend time and do some hiking there. When I scheduled it fur months ago. Was sure that my treatments would be at a managable level and there would be no problems for me. But after my appointment with the immunologist last week it became clear that they treatments would be at the very least at the same level they will be with the most recent increase. And potentially it could be worse if they are forced to increase once again.

I really wrestled with reconciling my medical condition and treatment to an out of the country vacation. The more I thought about the ore apparent it seemed to me that the Banff vacation was not going to work this year. I was in tears as that reality sunk in. We had been so excited and looking forward to this trip ands my needs, my medical needs was wiping out our plans.

I saw down with my adventure friend and explained what my concerns wer given the hard truths he had for me when I saw him last week. She was gracious and understanding. It is no wonderful I love and respect this friend of mine. She has a heart of compassion that is incredible and it even extends to me.

Onc I had fought back the tears once again I began throwing out some ideas of what we could do.i have more vacation that she does. I could easily take a Saturday,Sunday, Monday to do some short trips are the site we have been wanting to see. Thing like Crater Lake, the Painted Hills, John Day Fossil beds and so on. It began to be a bit more exciting as we realized that there were things we could do to get away within driving distance.

Soooo, though I am really disappointed , I realize that I cannot camp there, I need to look beyond my disappoint and begin to dream, some new dreams for my vacations. I think I will Have Tami make a list of some possibilities she would like to explore and then I will do the same thing and we will put a travel plan for the next three months.

I am continually amazed at the barrage of emotions I am hit with as I continue this journey ZI am on. They seem to come so fast, so unexpected and really rather constant as well.

I am thankfully today that I am not completely blinded by my disappointment and that Godis still in the business of putting hope in my heart. I have to say that it feels much better to me than the disappointment train that had pulled into my station.

Still trust God in all of th, still believing in the life, growth and lessons I will get to embrace ask continue on this journey. 

I am choosing to see life thr the glasses of faith and hope. There are good and wonderful things ahead.

Just Connie

Hard Truths

When I met with my immunologist this past week he had some hard truths for me. I can't say that I was excited to hear them, but as I have reflected on what he had to say I appreciate his honesty and that he is helping me see the big picture.

I had made the comment to him that I was not expecting to be on two treatments a week for this long. I was hoping that I would get up to a therapeutic level and we would be able to back off to one treatment a week. He looked me in the eye and said, "You know that you will be on treatment the rest of your life?" And yes, I did know that, but I think it is probably good to be reminded every once in a while to keep my expectations in line with reality. And then he looked at me and said, "The level of treatment that gets you to a therapeutic level of antibodies is the levels of treatment you will probably have to stay at to maintain that level. No, I did not know that. In fact, it is not what the last immunologist who treated me had indicated. He had always held out that perhaps I could back off treatment once my antibodies were at the right levels. I felt like I had been kicked in the stomache, but yet it was really important for me to know that.

But there  is the possibility at some point that treatment could change, or they will come up with something better. But I will have to come to terms that at least for the rest of this calendar year, treatment can only increase, not decrease. Next week, as the treatments increase it should get my antibodies up to where they need to be. I am praying for big numbers in 5 weeks when they do another blood test.

I am glad for doctors who will speak truth into my life, even if I tear up or don't like what I am hearing. I truly believe that God has put my doctors into place. This is a great team and I do appreciate them.

And that is good to remember, even when they share those hard truths.

Just Conne

Working On It

One of the things I have missed over the last couple of years while I have been ill is working alongside of the men at the church. I have missed the comraderie that comes when you are sharing the work of a project. I have missed spending time with my friends and missed being part of the service projects.

I have been feeling better over the past few weeks. My lungs are improving and I felt like I was gaining some strength. So when they asked me if I wanted to help them cut up a tree, I said "absolutely!"

I got all my errands and running around done early in the day, I laid out my work clothes and took a short nap and then .... Woke up sick, sick, sick! The side effects I had managed to keep at bay most of the week, hit hard. I managed to text them that I was struggling with side effects and would try to come if they let up at all. And then spent the next three hours miserable inside and out.

I was so disappointed, at what I was missing, at not being there to help ... At the rotten timing of the whole thing. And it highlighted how frustrating treatment is for me. Not only am I missing a couple of days out of my week, but the side effects can hit at any time.

I am working hard at accepting it because this is my reality and I want to find joy here. But I have to say I miss out on a lot that has been an important part of my life. I guess it is all about learning to embrace the changes.

I am working on it ...

Just Connie

Treatment Increase

I sighed as I finished unloading the car. I knew I was going to have to sit down and think about what the immunologist had told me just a couple of hours before. But I was working hard to,ignore it for a while.

But eventually the busy work was done and the reality of my appointment could not be avoided. My immune antibodies were not coming up. Treatment would have to be increased. And it looked like it will increase by 2 grams each treatment.

Those two extra grams will make a difference. First of all, it will be 70 C 'some of fluid. The syringes are only 60 CFCs. So that means the syringes will have to be swapped out after the first one is empty. It will also obviously increase the length of treatment. Probably back to over three hours again. And the side effects could potentially increase as well. But it is hard to imagine that it can actually get worse.

I told the Dr I am willing to do what I need to do to get well ... And I am. I just sometimes wish that it was not so hard and not so intrusive into my life. But as both he and the pulmunologist have reminded me. I will not stay well, if I do not fix the immune issues. One of his statements to me today was to remind me to stay away from sick people. That is much easier said than done.

So probably sometime next week the extra drugs will arrive and the increased treatments will start. I know I will adjust and go on .... Sometimes though, I wish it was different. The bottom line is that God is still big enough to meet this need in my life and bring me through. This is not the end, it is just part of the journey.

Another step forward ...

Just Connie

Busy Day

Because of my schedule and Dr's appointments, I was forced to do my gamma globulin treatment late in the day yesterday. That meant that today I was exhausted, queasy and fighting a pounding headache. I stopped at my primary care Physician and got a tordal shot  to take the edge off the headache because I knew it was going to be a long day.

I grabbed a quick breakfast with the Fruday morning groups and then headed to the church to wrap my sermon up and print out all the things we would need for our meeting tomorrow with the superintendent. From there I made a quick trip to the pharmacy (3rd time this week) to pick up meds. ThEn I headed home for lunch and a bit of rest.

By 1:30 I was on the road and headed to the Salem Onolcology Center for my Nucala. As I was siting in the waiting room the very kind man I met last time came in and recognized me. We sat and talked and I shared with him how blessed I was by meeting he and his wife and I really felt they were a gift from God to me that day. He laughed and said that he and his wife had said the same thing about meeting me. It warmed my heart to see him, though I could tell the chemo as taking a toll on him. He asked about my arms since I was wearing short sleeves and I explained how the drugs make my skin very fragile. He hugged me and I told him to say hello to his wife for me. I went in for treatment with a big smile on my face, thanking God for weaving our lives together.

By 3:30 I was released and heading home wishing that my air conditioning was fixed in my car. But I made it to Willamina where I headed to the grocery store to puck up the rest of the things we would need for our lunch with the superintendent.

And finally I headed home, tired, hot, still queasy and my headache beginning to pound again. But in spite of feeling kind of crummy it was a good day and everything got done.

Now I am enjoying the evening breeze that Willamina gets and looking forward to a good nights rest.

And then tomorrow, I hit the ground running. But I should feel a lot better by then!

Just Connie

Pulmunary Thoughts

I saw my pulmunologist today. It was a very positive appointment! I checked into Santiam Hospital for my chest X-ray and then presented myself for a round of lung testing. First round without meds and second round after a neb treatment. I am feeling so good that I was fairly sure that, the test results would be good.

After that it was time to meet with the Dr who was very, very pleased with my healing. He took me into his office and showed me my lung X-ray, in fact several of my lung X-rays over the past year. The first thing he showed me was my lung capacity. It was up by about 1/3. I am able to exand my lungs fully or the first time in over a year. The next thing he showed me was the wide swath of scarring had shrunk tonone thin line. I was so happy I almost did a happy dance right on his desk. But lucky for him I was able to keep most of my composure.

Then we went into the examination room and he told me my lung function tests were perfect. I told him that I feel great better than I have for a year. I mentioned there was no comparison to when I first saw him in the fall. He got very errors and said no there wasn't. We both got kind of silent, I think we were both thinking back to when he looked me in the eye and said, "Right now you are dying".

He listened to my heart and lungs, and we talked about treatments. Both Nucala and the gamma globulin. He would like me to talk to my Immunologist about switching to IVIG therapy instead of the sub cutaneous I am doing at home right now. I am willing to do whatever I need to do to get my numbers up off this plateau I have beeN on for the last three months.

He also said he believes the Nucala treatment is already working. I just know that I am really feeling better and I report to the Onocology lab tomorrow for my second shot.

So I left after 4 hours with a pleased Dr and a smile on my face. I have testing to do in a couple of months, but by then I might be completely off the prednisone.

It felt good to have such a positive appointment. Even the thought of treatment looming over me when I arrived home could not dim the glow.

Breathing well, breathing deep ....

Just Connie

Camping Thoughts

I have spent the last week camping. First by myself and then these last three days with my afventure buddy Tami. We decided that we would head to Devils Lake, only 30 minutes from the house and camp in the state park and do some paddle boarding. However it became clear to us before we left that the weather was turning and would not be good for paddle boarding. So the boards stayed home and our hiking boots went in.

I have never really liked staying in developed camp grounds. They are often noisy and people are camped right on top of you. But Tami found us a great spot very private, right on the edge of the peat marsh. Which was very interesting.

We pulled in by 4 and by 5, the tent was set up, our kitchen organized and we decided to go out to dinner.nhad a great dinner at the Dory Cove and then headed back to the camp, where we built a campfire,nthe first one Tami and even built and we did it without adequate kindling which was kind of a miracle. But the fire went well and we enjoyed sitting around the fire and thiing deep thoughts and talking wise words. ... Or so it felt!

The next morning's we woke up to rain, thunder and lightening. We actually learned thatTami's tent is water tight. But we finally got up, ate a light breakfast, got cleaned up and drove a few blocks to Dutch Bros so Tami could have her morning coffee. Then back to camp ground where we found the very informative board walk that went through a rare peat marsh. We ended up taking it all the way to Devils Lake and then down D River to The Ocean. It was a beautiful hike and the storm had eased up and there were actually patches of blue sky.

Headed back we decided to rundown to the outlet mall where we both picked up a couple of small things. Then we stopped for lunch at McMenimins and then headed to Safeway for bundles of tinder and s'mores supplies.

And then back to the camp where we built a nice fire and sat and played cards for hours and talked. It was so relaxing and so much fun. I headed to bed early and slept almost 12 hours. It sure felt good to lay there and look listen to the ocean. Once I had dragged myself out of bed, it was time to begin to pack up, gave a big breakfast and finally pack it all in the car and head home.

I got home just in time for treatment where I had left everything set out and ready to go when we got there.. Now I am finishing up my last rounds of post treatment and will start on go to bed.

I gave a feeling since treatment was so late today, I might be a bit rough around the edges tomorrow. But we will see.

I am very grateful for the chance to get out and pack, grateful for an adventure friend who is willing to go adventuring with me. I feel very blessed.

I have one more day of vacation and I am hoping to do a little yard work which would be amazing!

I am looking forward that the week is going to bring, looking forward to talking with my immunologist and that I am seeing my pulmunlogist this week as well.

Yep ... Lots of good stuff ahead....

Just Connie

Immune Result Thoughts

I think over the years I have gotten pretty good at accepting bad news. But sometimes the "news" brings a lot of unexpected emotion with it. It was that was for me late last night when I got the email I had been waiting for about my blood test results. The blood test that will tell me if I am gaining antibodies through the treatments I have been taking. The last two have been pretty disappointing, the very small gains had led my immunologist to increase treatment.

So after 4 weeks of increased treatment is was with excitement that I opened up the results, fully expecting to see big numbers, big gains ... And what I saw was ... 4 points. I gained 4 points! Not really believing that could be possible, I went back and looked up my last results and the one before it ... It was right I had gained 4 points.

The tears came as I began to contemplate what that meant. The possibility of yet another increase, or worse yet, adding yet  another day of treatment, or a change in medication ... All of those are all too real possibilities. It is already fairly challenging to fit life into my treatment schedule, the thought of adding more is a bit overwhelming.

But I guess I need to try to keep it in perspective. I think back to my meeting with my pulmunologist last Fall when he looked me in the eye and said, "Right now you are dying". I have made improvements since then and I know I am doing better. I am not fighting a constant round of back to back infections. They are working hard to get me off the steroids I hate so much. And I am currently pneumonia free. All good things. But yet my numbers are still too low. They are not in therapeutic range.

So I am going to try and find peace as I wait for the expected call from my immunologist over the next couple of days. He will have a plan and I know there are things we can yet do. I just wish ... In my heart of hearts that the numbers had come up as expected.

So I am praying ... for answers, for peace, for wisdom from my dog chorus. But most of all for a joyful accepting heart for this journey.

Just Connie

A Beautiful Life

It was a rough night for me. I had treatment side effects waking me up and keeping me up. I medicated what I could and kept heading back to bed, hoping I would sleep. But that did not really happen and at 5am I was up getting ready for yoga class. I am only about 10 minutes from the farm I take my class at. It is taught by my primary care physician. Not only is he a wonderful Dr, he is a great yoga teacher. I credit a lot of my lung function and I wellness into what he does to keep me upright and breathing.

After yoga I headed back home, quickly got cleaned up and headed to the Chamber meeting. I love tha group of people and I am so very thankful for them. We tease we laugh and especially we pastors are merciless with each other. I think people enjoy seeing the people side of our lives. They really encourage us and also root us on in our Non stop teasing.

I took my first round of pre treatment drugs while at Chamber and at the end quickly left for home to take the 2nd round. I am fairly entertaining after round 2 of drugs. But before I knew it I was home, had. Taken the drugs and had the syringe loaded with gamma globulin for treatment. At 10 am my heart friend Carolyn comes and places the needles for me. And makes sure I do not go into anaphylactic reaction. I also take more drugs at this time to help,with the migraine. Then I headed to bed to sleep things off.

I woke up an hour later with the realization that one of the sites were leaking. That means it just got too saturated and there was no whe else for the medicine to go. So I carefully traced down the leaking site and clipped the line off. I texted Caro to give her a heads up while I tried to stay awake to monitor what was going on. But finally the pump clicked off and I texted Caro again and told her she could come and de-needle me. She did a great job, some swelling, some soreness and gratitude that most of the meds went in.

Then I headed back to bed, to sleep some of the drugs off over the next few hours. Now I am groggy from the drugs, but not all that hungry. I think I will listen to my body and concentrate on fluids tonight. My head is pounding, I am nauseous  and my arm is sore and itchy. All normal kind of things after treatment.

Though this process is not fun, nor is it easy. I am thankful for the life that it is giving me. I have great support, lots of people who for some reason love me and a wonderful ministry. I truly am blessed. The journey is richer because of it.

So glad I can see it, so glad I can feel it ... It is a great life.

Just Connie

Infusion Reactions

Today, I hopped out of bed at and headed to my yoga class. But before I did that I had to ensure that all my medications and supplies were ready for treatment lasted in the morning. I packed my two rounds of pre treatment drugs in my bag and I headed to class.

As usual class was wonderful, uplifting and inspiring. Though I did find myself still getting short of breath which I find frustrating. But I will not let it keep me from class.
After class I headed to Willamette Valletta Medical Center to have my  Immune Panel Blood draw. That took very little time and I was soon on my way back home to start my pre treatment drugs and make sure that everything is read for the 10am treatment.

I got home in time to do a little cleaning and make some breakfast, but before I knew it, my friend Carolyn was there to help me set my needles. She carefully sought places with out scar tissue and gentle inserted the three needles, taping them down  firmly and watching for blood in the lines which would make us take everything out and start again. But it all looked good and she headed back to work and I headed to bed to sleep the drugs off.

I was awakened by pain in my infusion arm. I was noticing sone leaking so I quickly clipped that line and headed to a mirror to take a look at the site. It was with different stay that I noticed  it was swollen and red and not looking very good. So I  called Carolyn who was soon there to take the needles out and take a look. She pulled them out, disinfected everything and then said, "I do not like how this looks. It is still swelling and you are getting welts" so she took a pen and drew around the outside of the swelling so she could monitor it. For thence t 15 minutes it fkept swelling past its boundaries. But finally it began to go down. That is when we noticed that my blood pressure had spiked as well.

Sighing ... I did all the things I was supposed to do and charted all the problems. After 45 Munster she felt like I was stable enough to be left and she headed back to work and I headed back to bed to sleep it off as much as possible.

I am grateful for Friends who will go I over and above the call of duty to help. I am blessed. But I have to admit I could do with out these little unexpected down turns. It makes for a hard and exhausting treatment. And the  recovery is longer .,..

Sigh... But every bit is helping towards a strong immune system. So I need to embrace this reality with joy. It will not always be like this. There are good things ahead!


Just Connie

Busy Friday

Friday's .... Always unpredictable and full of the stuff that has to get done. Today looked like it was going to be pretty laid back and easy, but as often happens it filled up pretty fast.

It began with my 6am yoga class. I am very thankful for this class and I believe it has been one of the key components on keeping me breathing and doing as well as I have been. After yoga I go home, clean up and then head to Coyote Joes our local restaurant where I have breakfast with a group from the community. It is always fun, and full of the latest news around town and plenty of teasing. This morning's thing centered around my invitation to be the Grand Marshall of our 4th of July Parade. Everyone has suggestions for me and of course wanted to know if I have been practicing my parade wave.

After breakfast I headed to the grocery store to get food for Sunday's potluck and everything I needed to make a couple of pies for the pie auction. Then it was time to head home, unpack groceries, take meds for the lingering treatment side effects and put a chicken in the oven to bake.

While the chicken baked, I laid down to see if I could sleep off my headache and woke up in time to take the chicken out, have lunch and drag out my hiking guides. I needed to come up with some suggestions for tomorrow's hike. As I was, perusing the guides I got a phone call that a parishioner was critically ill. So for the next four hours I spent with people I love and I sorrow for.

By the time I headed home it was 6pm and I made a quick stop at the Fire Station to check in with the crew. At 7 my hiking partner popped in and since neither of us had dinner yet, we decided for to go and eat and decide on where we were going to hike in the morning. So for the next hour and a half, we talked, laughed and enjoyed considering a variety of hikes. Finally though the hike was chosen, the food was eaten and I was back home.

Now I am laying out my hiking things, so we can get an early start in the morning and looking forward to getting outside and letting the beauty of God's creation blow the cobwebs out.

Life is busy, life is good and I am looking forward to tomorrow.

Just Connie

Today's Thoughts

Tuesday are often challenging for me as they are often between two treatment days. That means I am struggling with side effects while I am trying to be present for staff meetings and try to get my sermon wrapped up and sent off. I also have a lunch Kiwanis meeting which I try hard to be present for.

Today, I headed to the office about 7:30 and got some work done and then headed to the Dr's office so that I could get a tordal shot, which is a non narcotic medication which cuts the edge off of the post treatment migraine that seems to hang on. Then I headed back to the office to wrap up my sermon, get it sent off to the sound tech and the office so they can put the outline in the bulletin. Then I e-mailed the closing song to my piano player and printed everything out.

By the time that was done the staff was arriving for staff meeting. We went over what had happened at Annual Conference, and at the Seminary Conference I went to last week. We talked over last Sunday's service and took a look at the weeks ahead.

By the time the staff meting had wrapped up, I had just enough time to run and deposit my check in the bank, run home and test my blood sugar (which is doing so well because of the steroid step down I am working on) Then it was time for Kiwanis.

By the time Kiwanis wrapped up I was exhausted and headed home to rest. Before I knew it was  time to get up and make dinner and then get everything laid out for tomorrow's treatment. Tomorrow morning I will head to my 6am yoga class, then Chamber of Commerce at 8am and treatment at 10. It gets very challenging to try to fit everything in and there are things I miss every week. If treatment falls on Wednesday then I miss Wednesday night Drill at the Fire Station. If it is on Tuesday I miss Kiwanis. Sometimes it gets very challenging to try to fit everything in.

I know the end of the month I am trying to fit in a few days of camping and paddleboarding, treatment and Dr appointments. I I will also get my second Nucala treatment at the chemo lab that week. It probably means I will end up doing some late in the day treatments again.... which makes the side effects last well into the next day. However, I will do what I need to do. Next week I have my next Immune Panel blood draw which will tell me if the increased treatments are working and my antibody levels are coming up.

But in spite of all the juggling of my calendar and all the things I miss, including time with my family, life is good and I am grateful for the time I am given. And I firmly believe that there are good things ahead. I just need to keep moving forward.

Just Connie

Treatment Thoughts

I am often asked what treatment is like for me. I thought I would try to keep a photo recrd of it today. It starts at 5am in the morning. I get up, get dressed for yoga and make sure to lay out all of the supplies and drugs I will need. When I am done. It looks like this.

I then get all of my pre treatment medications and pack then in a bag to take to yoga class with me. When I get to yoga class. I take the first round of pre meds which is mostly steroids to
 help with inflammation. At the end of class I take the second round of pre meds and beat feet home before the medication takes effect.

Then I wash my hands and begin to put everything together. When I am done it looks like this. (Photo 2) So at this point medication is loaded in the syringe, I have all the mid and post treatment drugs prepared and I am ready for my helper to come.

Before I can have treatment I to do a breathing treatment for my lungs.

Carolyn comes in and gets scrubbed up and we discuss needle placements. She does a great job and I am very thankful for her willingness to come and help.



Over the next 15 minutes she will place the three needs for me and get them taped down.

Filing the syringe with 50ccs of Gamma globulinOver the next 2.5 hours I will check my blood pressure, take my mid treatment drugs and sleep because of all the drugs I am taking.

When everything has run its course I will call Carolyn and she will pop up from the Fire Station and remove my needles for me if she can break away. Otherwise I will do it.

It is wonderful to have these treatments at home. I do get tired of how much time it takes out of my life for two treatments a week and all the Dr's and Hospitals that are part of the process. Grateful for them, but in my heart of hearts I would wish for something easer to incorporate into my busy life

And this is my heart friend Carolyn. A friend for over 30 years, who loves me and helps me and is will to be trained in how to set my needles for me.

Other questions that peoples ask me .... Does it hurt? Yes but the pain does not last long. It is a small price to pay for life. Am I mad about  my illness. No I am not mad, sometimes filled with grief or uncertainty but not angry.

The reality is that illness is here because of original sin. Scripture tells us that the rain falls on the just and the unjust. Which means bad stuff happens to all of us.

So knowing I have this very serious illness going on, I have made some personal choices.

1.  I choose to faithfully rely on God and strive to grow in understanding, love and relationship as I journey.

2.  I choose trust. Ultimately trust in God and trust in His abundant love for me.

3.  I choose to make my life to the best of my ability to not center around my illness and treatments.

4. I choose to love extravagantly and invest in the people God has brought into my life.

5.  I choose joy. It will be infused nd empowering my journey and give hope to my future and those who journey with me.

I just want to thank you for your prayers, your faithful and your love that blesses and humbles me.

Looking forward to where this journey takes us.

Just Connie