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