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
Friday, June 30, 2017
Thursday, June 29, 2017
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
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
Tuesday, June 27, 2017
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
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
Thursday, June 22, 2017
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
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
Wednesday, June 21, 2017
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
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
Monday, June 19, 2017
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
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
Friday, June 16, 2017
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
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
Tuesday, June 13, 2017
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
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
Monday, June 12, 2017
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.
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
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 globulin
Over 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
Sunday, June 11, 2017
Assignment
I stood as they called my name and announced that it was my 9th year at Willamina. I was filled with such a sense of gratitude for another year of ministry with the church and community that I love. I looked over at my associate and my Conference Ministerial Student who stood as their names were called. What a blessing they are to the church and to me as they faithfully follow the call of God on their lives.
I am always amazed at the leadership team God has put together at Willamina. We have three ordained elders, 1 CMC and 2 who are working toward Consecrated Deacon. That gives an incredible leadership base for preaching and teaching. We also have a host of committed and skilled lay leaders who are faithfully serving.
I have to say that in some ways my illness has been a blessing. I am doing less and the staff and church are doing more. People are having the opportunity to spread their wings and grow in new ways. It has humbled me as I have watched people step into the gap and serve.
I have also been blessed by the incredible love and support of the community. There are a myriad of people who come around me every week and help in so many ways. They have been an incredible encouragement to me as I journey ahead.
I am excited to see what God will do in the year ahead. I am expecting the unexpected ... Great and wonderful things.
Just Connie
I am always amazed at the leadership team God has put together at Willamina. We have three ordained elders, 1 CMC and 2 who are working toward Consecrated Deacon. That gives an incredible leadership base for preaching and teaching. We also have a host of committed and skilled lay leaders who are faithfully serving.
I have to say that in some ways my illness has been a blessing. I am doing less and the staff and church are doing more. People are having the opportunity to spread their wings and grow in new ways. It has humbled me as I have watched people step into the gap and serve.
I have also been blessed by the incredible love and support of the community. There are a myriad of people who come around me every week and help in so many ways. They have been an incredible encouragement to me as I journey ahead.
I am excited to see what God will do in the year ahead. I am expecting the unexpected ... Great and wonderful things.
Just Connie
Thursday, June 8, 2017
Annual Conference 2017
I am in Redmond Oregon tonight. Tomorrow the Oregon Free Methodist Churches will meet together to give reports, hear from our bishops and to find out what churches the pastors get assigned to. I am not fearful about my appointment to Willamina but it is always good to hear my name called as I am officially assigned there for another year.
I love Annual Conference. I love the opportunity to hear from our bishop, to meet with my fellow pastors and to spend some deeper time with my staff and delegates from my own church. And always have the chance to meet people I have never met before.
I truly feel blessed to be here, blessed to be assigned to Willamina, blessed to have the privilege of serving as a pastor.
And blessed is a good way to feel ...
Just Connie
I love Annual Conference. I love the opportunity to hear from our bishop, to meet with my fellow pastors and to spend some deeper time with my staff and delegates from my own church. And always have the chance to meet people I have never met before.
I truly feel blessed to be here, blessed to be assigned to Willamina, blessed to have the privilege of serving as a pastor.
And blessed is a good way to feel ...
Just Connie
Wednesday, June 7, 2017
Thriving in Ministry Conference
I just spent the most interesting 3 days. Portland Seminary had chosen 21 pastors from across the country to participate in an information gathering process in regards to Helping pastors Thrive in Ministry. They had received a very generous grant to help them take this first step.
I was amazed by the depth of the participants. We came from many different denominations, different church settings, different nationalities, different genders and sometimes completely different ministries. But yet we all had commonality at the point of what helps us Thrive and what helps us find depth and joy in ministry.
I feel honored to have been asked to be part of the group and honored by what was shared in openness and trust. I am excited to see how they will focus the next stage of the grant process and what it will mean for pastors. And what it will mean for those I know that might have the opportunity to apply for help in this area.
I am so glad I carved out the time in spite of treatments and Annual Conference. This was good for me.
And good for me is great to squeeze into my schedule ....
Just Connie
I was amazed by the depth of the participants. We came from many different denominations, different church settings, different nationalities, different genders and sometimes completely different ministries. But yet we all had commonality at the point of what helps us Thrive and what helps us find depth and joy in ministry.
I feel honored to have been asked to be part of the group and honored by what was shared in openness and trust. I am excited to see how they will focus the next stage of the grant process and what it will mean for pastors. And what it will mean for those I know that might have the opportunity to apply for help in this area.
I am so glad I carved out the time in spite of treatments and Annual Conference. This was good for me.
And good for me is great to squeeze into my schedule ....
Just Connie
Sunday, June 4, 2017
Sunday Treatment
I had to do treatment today after church because I am leaving in the morning for a Pastor's Think Tank in Cannon Beach. The whole purpose is to give thought and discussion about how we can help ministers Thrive in Ministy. I am very excited to be asked and I looking forward to being with a group of interdenominatioinal pastors as we brainstorm together.
I was a bit worried about having to drive that far in the morning after treatment, but I think it was resolved in a very unusual way. I hooked up all the medications and the line that pumps the gamma globulin into me. I headed to bed to sleep through treatment which usually works fairly well. I woke up an hour into treatment soaking wet. It seems that one of the connecting tubes had come loose. I have no idea how much went into me and how much went into the bed. Sigh ....
However, it dawned on me that I did not get as much gamma globulin as I was supposed to. That means I would be dealing with fewer side effects today and tomorrow. I gues it is the silverlining in the dark sky.
So tomorrow I will pop out of bed, go to my yoga class, come home and clean up, pack up and make a pharmacy and bank run. Then I will head north to Cannon Beach. Somehow it always works out. I just want to be well and sharp for this group I have been asked to be a part of.
There are good things ahead, there are always good things ahead even when times are tough.
Just Connie
I was a bit worried about having to drive that far in the morning after treatment, but I think it was resolved in a very unusual way. I hooked up all the medications and the line that pumps the gamma globulin into me. I headed to bed to sleep through treatment which usually works fairly well. I woke up an hour into treatment soaking wet. It seems that one of the connecting tubes had come loose. I have no idea how much went into me and how much went into the bed. Sigh ....
However, it dawned on me that I did not get as much gamma globulin as I was supposed to. That means I would be dealing with fewer side effects today and tomorrow. I gues it is the silverlining in the dark sky.
So tomorrow I will pop out of bed, go to my yoga class, come home and clean up, pack up and make a pharmacy and bank run. Then I will head north to Cannon Beach. Somehow it always works out. I just want to be well and sharp for this group I have been asked to be a part of.
There are good things ahead, there are always good things ahead even when times are tough.
Just Connie
Saturday, June 3, 2017
Alone Thoughts
For the most part I think I have adjusted to life on my own fairly well. But I have found over the past couple of years that I have needed help just keeping up with everyday life. I have a very kind neighbor man who carries in the 40 pound bag of pellets and loads my stove for me when I am sick. I have an incredible woman from the church who has been helping me with floors every week. And I had a group from church and town who came and rescued my flower beds. Lots of people helping and breathing life into me.
At the church, the staff have come around and taken extra office hours, preached often and faithfully pray for me. The congregation has been there right beside me, loving me, encouraging me and praying. The fire department checks on me often, helps with setting my needles and makes sure I am doing well.
Yesterday, I had a conversation with my immunologist about being alone during treatment. I was pleased when he decided that I did not have to have a babysitter through the entire treatment. But he was pleased that there are people checking on me during and after treatment. I also told him that if my mother does not hear from me, she tattles to the fire department. That made him laugh. He said to keep the Epi pen close, as well as my phone and call when I need help, but he thought I would do fine.
When I find that I want someone with me is afternoons like today when I am struggling with miserable side effects from treatment. It is not that I think someone could do anything different than what I am doing ... I just ... Sometimes want the comfort of someone with me. Doesn't really make sense .... But I recognize the desire in me. If I was dangerously sick I would call for input or help as I have in the past. Today was not like that ... It was just sick and miserable.
And I am finding that you are never too old to not want your mommy when you are sick. I was glad for the chance last week to train my mother to place my needles and have my treatment up at their place.
Tomorrow after church I will have treatment with the increased dosage and 3 needles. 2 of my ministerial students are coming to help me place the needles. I really am blessed by incredible friends and support. The reality is that I am never alone.
All of you are just a phone call away ... And Hope Puppy is curled up alongside me right now.
Never alone ....
Just Connie
At the church, the staff have come around and taken extra office hours, preached often and faithfully pray for me. The congregation has been there right beside me, loving me, encouraging me and praying. The fire department checks on me often, helps with setting my needles and makes sure I am doing well.
Yesterday, I had a conversation with my immunologist about being alone during treatment. I was pleased when he decided that I did not have to have a babysitter through the entire treatment. But he was pleased that there are people checking on me during and after treatment. I also told him that if my mother does not hear from me, she tattles to the fire department. That made him laugh. He said to keep the Epi pen close, as well as my phone and call when I need help, but he thought I would do fine.
When I find that I want someone with me is afternoons like today when I am struggling with miserable side effects from treatment. It is not that I think someone could do anything different than what I am doing ... I just ... Sometimes want the comfort of someone with me. Doesn't really make sense .... But I recognize the desire in me. If I was dangerously sick I would call for input or help as I have in the past. Today was not like that ... It was just sick and miserable.
And I am finding that you are never too old to not want your mommy when you are sick. I was glad for the chance last week to train my mother to place my needles and have my treatment up at their place.
Tomorrow after church I will have treatment with the increased dosage and 3 needles. 2 of my ministerial students are coming to help me place the needles. I really am blessed by incredible friends and support. The reality is that I am never alone.
All of you are just a phone call away ... And Hope Puppy is curled up alongside me right now.
Never alone ....
Just Connie
Friday, June 2, 2017
First Nucala Treatment
I followed the nurse into the Onocology Lab. All around me where men and women receiving chemo. The nurse told me to choose any empty chair, I looked around and sat in the one closest to me. She soon came back with some information on the drug I was being given. I asked her where the shot would be given, she gave me the choice of abdomen or arm. I chose arm, even though that is where I am currently getting my gamma globulin infusions. She left to prepare my drug and to check on several of her patients.
I looked at my phone which I had put on silent and posted where I was and what I was doing. I try real hard to make sure everyone has the same information. Because it seems that in the absence of information people make it up as they go along. So I am very forth coming about how I am doing.
I sighed as I slipped my phone back into my pocket. It had already been a long day of dr's and it was only 2:30. As I looked up I noticed the couple across the aisle. The husband was having chemo and his wife was with him. She walked over and said, "You looked scared. It is going to be alright." I was so surprised and so blessed as she told me she was going to be praying for me. We exchanged a bit of our stories and I told them I would be praying for them as well. His chemo ended about the time mine was starting. I was incredibly blessed by them. It was such an act of kindness. And they affirmed what I have been saying all along. There is no downside for us as Christians. Life is good and there is better yet after that.
My treatment went well, I had some wheezing afterwards but I am treating that. I am still resting in the joy of the people God gave me today.
Life is good ..... And yet there is even better ahead.
Just Connie
I looked at my phone which I had put on silent and posted where I was and what I was doing. I try real hard to make sure everyone has the same information. Because it seems that in the absence of information people make it up as they go along. So I am very forth coming about how I am doing.
I sighed as I slipped my phone back into my pocket. It had already been a long day of dr's and it was only 2:30. As I looked up I noticed the couple across the aisle. The husband was having chemo and his wife was with him. She walked over and said, "You looked scared. It is going to be alright." I was so surprised and so blessed as she told me she was going to be praying for me. We exchanged a bit of our stories and I told them I would be praying for them as well. His chemo ended about the time mine was starting. I was incredibly blessed by them. It was such an act of kindness. And they affirmed what I have been saying all along. There is no downside for us as Christians. Life is good and there is better yet after that.
My treatment went well, I had some wheezing afterwards but I am treating that. I am still resting in the joy of the people God gave me today.
Life is good ..... And yet there is even better ahead.
Just Connie
Burn to Learn
I got to do something I have not been well enough to do for months. I got to participate in a Burn to Learn. It was great to be back with the crew and work alongside of them.
I have really missed training with them and I think I will what I can do about moving my treatments from Wednesdays so that I can go and train with the crew again.
This was actually a house that we have put fires out a couple of times. The last one was arson caused, probably by transients who were using t
he house to camp in. This time it has been burned to the ground at the hone owners request. I think everyone in the neighborhood as well as the Fire Department is glad to see it go with the problems that it brought with it.However, I had a wonderful time, though I was way too tired at the end of it. My mask continues to work extremely well and my lung function was no lower at the end of the fire as it was at the beginning. Not only that it was a bit higher this morning.
I really love my jobs! I love the pastorate and the people, but I love the opportunity it brings me to work with such an incredible group of people and learn so many new things.
I am truly blessed.
Just Connie
Treatment Challenges
Today I see my immunologist. We will talk about the recent increases to my treatment and talk about what he sees for the future. I t will be a couple more weeks until I have my next Immune Panel blood work done which will tell us how successful the increase has been. I am sooooo ready for some good news on the antibody levels.
I have to admit that the two treatments a week is very challenging. This coming week is a good example. I will rush home from church and do my treatment Sunday afternoon. Because on Monday morning I head to Canon Beach for a three day inter-denominational planning conference. Wednesday I come rushing home and have the second treatment, because on Thursday morning I leave for Redmond Oregon for our Free Methodist Annual Conference. The down side to that plan is that I will probably not be feeling well for my drive yup to Canon Beach on Monday, and I will probably not be feeling for my trip to Redmond as well.
But, this is my reality and I am determined to not let treatment take me out of the important stuff I need to do, that I want to do.
So I will take my meds, grit my teeth and just get it done. And I am thinking that there will be some pretty great things that will happen on these journeys.
There really are good things ahead,
Just Connie
I have to admit that the two treatments a week is very challenging. This coming week is a good example. I will rush home from church and do my treatment Sunday afternoon. Because on Monday morning I head to Canon Beach for a three day inter-denominational planning conference. Wednesday I come rushing home and have the second treatment, because on Thursday morning I leave for Redmond Oregon for our Free Methodist Annual Conference. The down side to that plan is that I will probably not be feeling well for my drive yup to Canon Beach on Monday, and I will probably not be feeling for my trip to Redmond as well.
But, this is my reality and I am determined to not let treatment take me out of the important stuff I need to do, that I want to do.
So I will take my meds, grit my teeth and just get it done. And I am thinking that there will be some pretty great things that will happen on these journeys.
There really are good things ahead,
Just Connie
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