Some good news, some bad news….
Tuesday
Tonight is probably not a good night write this blog. I really need to process all that has been going on today. But perhaps by writing, I can find spiritual strength and in turn, physical strength as well.
Wednesday
Well ,I didn’t get far last night. I guess the day was just too long with the trip home from Kansas City. I’m going to try the voice-to-text function, because my fingers are just too sore to type. Or at least, it slows me down too much. I’ve never really used this before, but I’m finding that it is pretty accurate. It would probably be more accurate if my nose were not plugged up, and I could speak with my normal voice.
Thursday
We arrived at Marks house late afternoon on Monday. He was not home. He was in Canada and thought that he would be there until Wednesday. However, he was able to come home, so we were able to see him after all. He got in in the middle of the evening. We took the boys out to eat while Amy went to the airport to pick him up.
As I was getting ready for bed it was pretty late, but Mark[s ex-wife sent me a private message. It was just the sweetest message. I have not had a lot of contact with her for a while, so it met a lot to me when she wrote. When you need a pick-me-up the most, God sends some someone along to meet that need. Sometimes, we don’t realize that God is prompting us to make a phone call, send a message, send an email or perhaps letter or a card–we don’t realize how much it does for the person who’s receiving that. (Note to self: always follow through when you feel those promptings.)
I arrived at the doctor’s office in plenty of time, but they had me down for lab being drawn from my arm rather than my port, so it took a bit of time to change that in the computer since the infusion center accesses the ports – not the lab. It doesn’t make sense to have to stick me twice. So, when I got to the infusion room, I was kind of stuck in the back of the room. I waited and waited, and now it is 15 minutes past when my scan was to start. Finally, someone from another bay asked what I needed, and she said she would get my nurse. She was an older lady I had not seen before. She apologized for being late, but said I was an “add-on” to her load, and she was working me in. Note to nurses and all people everywhere: NEVER make your client feel as if they are an “add-on.” You should apologize for making them wait, but do it with a smile and leave it at that! Got that off my chest!
I made it to the CT room OK and got my scan, but by that time, it was time to see Dr. Powers. I knew the results of the scan would not be ready, and that is what I was there for! Anyway, the first thing Dr. P showed me was a paper that showed the results from the tissue study. The cancer had mutated again, BUT there was only ONE mutation. The drug recommended was “weakly” recommended – not like the Mekinist for the 1stmutation. However, he was willing to let me try it if I wanted. He didn’t seem very positive at all, but he didn’t the last time, either. I guess that is the way he has to be in order to not give false hope. I said, “Let’s go for it! I’m not giving up yet.” He said he had no assurance that I would be able to get it, first of all, and IF I could not, or IF I got it, but it didn’t work, he had no other options, and I would need to look at contacting hospice. He said he wasn’t giving up on me, but he had no other options to give. I told him my God was a big God, and I had so many people praying. I’m not sticking my head in the said and denying reality – I know that I’m probably not going to beat this type of cancer, short of a divine miracle of God) but I would like to have as many more months as I can get.
The nurse was able to pull up the results of the CT scan on the computer by then. There was no written report yet, but he was able to bring up the previous scan and compare the difference himself. The previous lesions in the lungs were back and enlarged. There were two significant new ones. At least the liver was clear. Praise God for that! Dr. P said to go ahead and stop the Mekinist now since it was not helping, and the side effects were too great.
I did go ahead and ask him, point blank “Suppose I don’t get the medication, or it doesn’t work? How long?” He, of course, would not commit himself to a time frame, but he said, “Weeks to months.” Months was what he told me last time, and I made it almost 6 months on the Mekinist.
I left there pretty dejected. We went to eat with Mark and Amy, and Mark was adamant about me getting back on this Afaya supplement, and I promised him I would. Interestingly enough, today my pastor sent me this link telling all about this. I thought it was to be rather secretive, but apparently the word is out. https://www.gbtribune.com/news/business/from-flower-to-treatment-/ So perhaps there is more to this than I first thought. We’ll just have to wait and see. BTW, Lyons is the next town west of LR, and Sterling is just south of Lyons.
So, there are the facts. How do I feel about all this? Good question. I’m trying to stay positive. The reality is that I need to get my affairs in order. I pretty much have them that way anyway – will, etc. I’ve thought about – even before all this came up – of selling my Bernina 830 LE sewing/embroidery machine. Jeannine will get all the sewing fabric, machines, etc. but I’m not sure she will want my big Bernina. It is complex enough that you really need to take classes to learn it. By the time her life is in any kind of order to take that on, it will be outdated. I have to carefully pick and choose what I work on now because of my fingers. This I’ll-get-to-it-some-day isn’t going to work now. The other thing is that as long as that expensive machine is sitting there, I feel compelled to work on SOMETHING. But some days I want to just sit and watch Jeopardy…..or take a nap. Truthfully……quilting no longer buns a fire in my belly that it once did. There are other things to deal with. I can’t get to the guild meetings like I used to to get inspired. I feel guilty with all that fabric, books, patterns, unquilted tops, etc. and here I sit, typing on a computer. What to do…….what to do…… sigh!
I need to clean out a lot of clothes – and just “stuff” – stuff you don’t want your husband or kids to have to wade through.
I know this sounds rather woebegone and negative. I guess I’m having a big dose of reality setting in.
On the way home a dear, sweet friend from my Alabama SS class called me. Again, God prompted someone, telling them what I needed. She prayed a beautiful prayer for my healing. She has called before and prayed with me. She is ABSOLUTELY CONVINCED that I am going to be healed. All you need when praying is faith the size of a mustard seed, but this lady’s faith is the WHOLE TREE!!
Later in the evening, I was walking Annie, and I looked down at my feet and thought, “Thank you, Lord, I have feet and legs that allow me to walk, I have hands that work, etc”. You know, I really am blessed. I have a mind that still works – I’m not like one of my friends that has brain cancer and sometimes doesn’t recognize her husband (breaks my heart!). I have a husband that loves me and takes care of me. I have children that love me and call and talk. I have beautiful grandchildren that are healthy and smart and doing well in school. I have a group of ladies in my Bible study that are SO loving and supportive - the whole church, actually. I have a wonderful, caring pastor who, just today, visited us in our home again. (Guy and I tried to remember the last time we had a pastor come to our home on a pastoral visit and could not remember one. I think this is the 4th visit since we moved here)
It helps to have someone to be brutally honest with and just talk it out. He asked if I ever asked why. I said “Oh yes! I’ve asked that question several times.” But there’s no real answer to that question. He said, “I’ll tell you about the time I asked why. Their first daughter died as a baby, and he said if I asked why and God answered my question, it would not bring my baby back.” It doesn’t matter what the answer is, the issue still remains: the baby is gone. It brings no fulfillment. I had never thought of it that way. It certainly makes sense. It does not change the situation at all. I was just thinking about that very question this morning. I’ve lived all my life as a Christian - as a good girl, and it just doesn’t seem fair. Well it isn’t fair! But that’s not how Life is or how God looks at things, so it’s really just time wasted, and it doesn’t get you anywhere. It doesn’t solve anything. It just makes you feel bad. You know, since my parents both lived to be in their 90s I just figured those longevity genes would be transferred to me. And they probably would have if this free freaky monstrous thing has not happened. There’s just no answer to that. There’s no rhyme or reason. For some reason, I was just chosen to bear it, so I have to make the most of it. There undoubtedly is a reason, and I don’t really need to know that reason. I just need to, as my pastor says, “don’t waste your cancer.” So that is what I am trying to do. I’m trying to make the most of what I have and try not to concentrate on what I don’t have. You know, all of us are just passing through this life. All of us are not going to be spared the end result of anyone’s life–unless the Lord comes back and raptures us, we are all going the same direction, some more gracefully than others, I guess. Some days, I do it more gracefully than others. But as I look at the days that I may have, or not have, I have to prioritize my situation which involves looking at reality which is not particularly exciting. For instance, I look at the Kansas State Fair that is coming up in a couple weeks. In my growing up years and my adult years in this area, I have attended the fair every year. I just love the Fair! This seems like such a petty thing but this could very well be my last Fair I get to attend. Now when I look at that in terms of what I’ve just talked about the above, that would be very low on my priority list, but it’s just trivial things like that that come to your mind, and is it time doesn’t seem very trivial when you remember the memories you made with your family there. Last year we as a family, Jeannine, Sofia, and Maya and Mark and Amy were all able to attend the fair together. It was such great time. I can’t allow myself to start thinking about this could be my last thisor thatbecause that’s just the destructive rabbit trail to run down. And there are certainly plenty of those rabbit trails here, there and yonder beckoning you to get off track. I’m not going to allow that to happen. My devotional book constantly reminds me to come back and focus on God’s presence. In this life,it certainly is the only sure thing. I know He will never leave me, never forsake me and He holds me by my right-hand–that’s all scripture. And that’s the only thing I know for sure I can bank on when everything else is fleeting
I’m going to include some pictures at the very end of this blog, so if you are squeamish or just don’t want to see them, just don’t scroll down past the end, They are there for those who do wish to see them, and many of my nurse friends do–we are just that way. J
If you wish to pray specifically for me here is a list of specifics Pray
for my sinuses. That they will clear and my nose will stay open without the aid of medication sprays which I don’t want to become addicted to. Synex is the only thing I can use that keeps my nose open long enough for me to sleep, so I only use it at bedtime and don’t use it during the daytime. The only thing that opens my nose during the daytime is for me to standup. I know that sounds crazy, but sometimes when I’m sitting my nose will open for a few seconds, and then I feel this wave comong and it plugs up again.
Pray for my fingers to heal. They are very very tender. Each time I bump something with them, it almost brings me to tears. Obviously, I can’t play my keyboard in church, and I miss doing that very much.
My nails are not splitting. It is the skin next to my nail that splits. Then this Mekinist just attacks any broken skin. The skin is growing back up over my nail.. If you could look closely, you'd think you could just clip off that skin, but it is ALIVE.
Please pray for my very swollen eyes. Don’t know why that is back again, but it is miserable – can barely see or read. And pray for this miserable hem(^%$#( to go away and stop bleeding!!
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Pray for me to be able to get this medication and then pray that it works. Also pray that the side effects are not terrible. When I asked the doctor about the side effects, he said they were not an issue. He kind of brushed that off. But before I left, they printed out a copy of the medication, how to use it, side effects, etc. One thing I didn’t have to worry about when I was on Mekinist was my blood counts. It did not affect that. In fact Hgb even increased while I it. But I notice with this new medication that it does affect your blood counts, both red blood cells in the white blood cells. Being immunocompromised again means I’d be subject to getting infections easily and have to stay away from people who are sick. It also has listed skin rashes as a side effect. I don’t know what that entails, but I certainly do not like how this Mekiniat treated my skin – rashes and itchiness. I just glanced at the side effects quickly, so I don’t remember seeing a dry mouth there, which certainly affects ones appetite.
Pray that I can go back to resting well at night. That never was an issue for me until my nose started plugging up. Right now, I’m having to sleep propped up on pillows–with the aid of the nose spray.
Pray that God’s peace will remain with me, and I will not become fearful
. Pray that I will continue to look for ways that ways I can help others and be a blessing. I don’t want to drag others down with my cares, because I certainly am not the only one in the world that has cancer or has a problem. I want to be attentive to others that have needs and pray for them.
Oh yes, please pray for my left side. Dr. Powers did not address that when I was there to see him because the written report was not ready yet. Once that is written and posted on MyChart,, I’ll be able to read it and see if there is Indeed something more going on there it has become quite painful when I make certain movements or when I cough. The cough is not related– I don’t think – to the lung lesion, but I it seems to be more in my throat, which comes from these medications that I’m using. Those things go to your throat and sometimes make it sore or makes it tickle and consequently cough.
So sorry to take so long to get this out!
And as always…..I’m in His hands……
Scroll for more pictures.
This is actually looking pretty good. If you were to look at my face straight-on, you can tell the left side of my face is swollen. somewhat When Mekinist took care of all that purple, it was not swollen at that time.
That which is on my forehead is spreading fairly rapidly. It is starting to drain more also. I haven't been covering it up, because I hoped it would dry and fall off - don't thin that is going to happen. It is starting to leak through my little caps. Can't wear my wig because the edge goes right over that spot. It all itches, too. You can tell this is a mutation, because it doesn't look or act like that purple stuff that was on my face.
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