about my Mom. She is doing great. She had her left hip replaced and when just a few days ago I used to call her Gimpy, I now call her Speedy. Long way to recovery, but Donna has been there since surgery and helping out a lot. YAY! She leaves this Saturday.....yikes! Five weeks to go!
I am fine. On vacation with the test results out, but it doesn’t mean I don’t worry, or cry, or have anxiety, migraines, etc., but that is part of the game, right?!?!?
We are fine and moving right along with life as we should.
Happy Thursday, Ang
Thursday, October 24, 2019
Wednesday, October 16, 2019
My cup runneth over.....
First, I do apologize. I did leave a lot of people hanging, but I had a lot of my life to live and I did that......
I met with Hank on Thursday of last week. We did not look at scans, I downloaded what I gathered happened which was confirmed (sad that I understand it now), and we talked about what we can do now. There are two traditional chemo therapies - one I was on 11 years ago during general radiation to my pelvis. The other I do not know. Both are toxic to the system, both have unflattering side effects, both hurt your blood counts. Now, my blood counts are good, but not normal. After 99 hits of traditional chemo, that cannot be expected. But, there is a "new" thing. Keytruda was an immunotherapy and this is a genotherapy. The first works with your immune system. The second with your DNA - I think.... Upside, not toxic. Downside, sometimes not effective and you pay for the test $4700. One blood test - $4700, unless insurance decides to pay. Now, let's be realistic. I am not a good bet - they have rejected other things - treatment things, but in the end, I got them or a version of them. I have never gone without care. SOOOOOOOOOOOOOOOOOO, I do the blood test and the result come in in three weeks. There are up to six genotherapies with a vast variance in success rates. I don't know what it looks like, I don't know how or if it will be, but I can tell you, if I qualify, I will do it. Blessing one.
Blessing two - Canadian Thanksgiving. A family that we LOVE from the great white north came for Canadian Thanksgiving. Rob, Jen and the GIRLS - both - visited and we did the pumpkin patch, big amazing Turkey dinner - butter under skin forever, Hong Kong Market (inside joke), the last stay at the Hawthorne Suites (inside joke), etc. Now, remember Robin has the same cancer I do, so when it is just our families, things are a bit easy. No judgement....no questions.....half sentences....because we get it. It is like a vacation from the the normal to our normal. I like it. Robin probably hates it, but I have never put too much into his feelings, so we are good. LOVE YOU ROBIN!
Blessing three - Monday, I was at acupuncture. I love Jessica and she is amazing. We do acupuncture and then she wanted to really get me in a good space, but I started talking politics. She is so awesome.....she was like, "Okay, so we talking about that, but now we need to put that away. Gather it up and set it against the wall and work on our focus and your healing." Okay, not exact quotes, but close. So, I do. Up against the wall, pixsy dust and stars, everything positive... "Okay, now we are going to move the negative out of the room......so we do and she and I both feel another "being". NOTE: Usually, when you do this it is self motivated. You are moving the energy. You are moving the light. Jessica pauses and says, "I think that was God. He was like first in line saying, 'Yeah, I will just take that from you.' You told me you had a relationship with him but, HOLY COW." I felt it too, never quite that strong other than the time, I wanted to die and he wouldn't let me. It felt good and I was calm. All I could remember..."Be not afraid."
Blessing four - My Mom's hip surgery went swimmingly. Text book. She was great. Let the healing begin!
Blessing five - On my way back from the hospital to pick up the kids, I got a call from the blood test people. CRAP. I called back. My test will be paid in full, I just need to fill out one more form. "Yes, I can scan and send.....email it to me....."
Tomorrow, I am going to Bible Study to celebrate with them (no I didn't finish the study, but Day 3), the hospital to tell my mom that the hip fell out during surgery, they had to refit it, it was touch and go but we thought we got all the gangrene but only time will tell. lol. I am really there to get her out of bed and love her, and to love and curse the rain, have my kids forget stuff for school, cook an amazing recipe from a box that keeps coming every week that I don't know is sending, and just fricking keep swimming.
My cup runneth over......
Happy Wednesday,
Ang
I met with Hank on Thursday of last week. We did not look at scans, I downloaded what I gathered happened which was confirmed (sad that I understand it now), and we talked about what we can do now. There are two traditional chemo therapies - one I was on 11 years ago during general radiation to my pelvis. The other I do not know. Both are toxic to the system, both have unflattering side effects, both hurt your blood counts. Now, my blood counts are good, but not normal. After 99 hits of traditional chemo, that cannot be expected. But, there is a "new" thing. Keytruda was an immunotherapy and this is a genotherapy. The first works with your immune system. The second with your DNA - I think.... Upside, not toxic. Downside, sometimes not effective and you pay for the test $4700. One blood test - $4700, unless insurance decides to pay. Now, let's be realistic. I am not a good bet - they have rejected other things - treatment things, but in the end, I got them or a version of them. I have never gone without care. SOOOOOOOOOOOOOOOOOO, I do the blood test and the result come in in three weeks. There are up to six genotherapies with a vast variance in success rates. I don't know what it looks like, I don't know how or if it will be, but I can tell you, if I qualify, I will do it. Blessing one.
Blessing two - Canadian Thanksgiving. A family that we LOVE from the great white north came for Canadian Thanksgiving. Rob, Jen and the GIRLS - both - visited and we did the pumpkin patch, big amazing Turkey dinner - butter under skin forever, Hong Kong Market (inside joke), the last stay at the Hawthorne Suites (inside joke), etc. Now, remember Robin has the same cancer I do, so when it is just our families, things are a bit easy. No judgement....no questions.....half sentences....because we get it. It is like a vacation from the the normal to our normal. I like it. Robin probably hates it, but I have never put too much into his feelings, so we are good. LOVE YOU ROBIN!
Blessing three - Monday, I was at acupuncture. I love Jessica and she is amazing. We do acupuncture and then she wanted to really get me in a good space, but I started talking politics. She is so awesome.....she was like, "Okay, so we talking about that, but now we need to put that away. Gather it up and set it against the wall and work on our focus and your healing." Okay, not exact quotes, but close. So, I do. Up against the wall, pixsy dust and stars, everything positive... "Okay, now we are going to move the negative out of the room......so we do and she and I both feel another "being". NOTE: Usually, when you do this it is self motivated. You are moving the energy. You are moving the light. Jessica pauses and says, "I think that was God. He was like first in line saying, 'Yeah, I will just take that from you.' You told me you had a relationship with him but, HOLY COW." I felt it too, never quite that strong other than the time, I wanted to die and he wouldn't let me. It felt good and I was calm. All I could remember..."Be not afraid."
Blessing four - My Mom's hip surgery went swimmingly. Text book. She was great. Let the healing begin!
Blessing five - On my way back from the hospital to pick up the kids, I got a call from the blood test people. CRAP. I called back. My test will be paid in full, I just need to fill out one more form. "Yes, I can scan and send.....email it to me....."
Tomorrow, I am going to Bible Study to celebrate with them (no I didn't finish the study, but Day 3), the hospital to tell my mom that the hip fell out during surgery, they had to refit it, it was touch and go but we thought we got all the gangrene but only time will tell. lol. I am really there to get her out of bed and love her, and to love and curse the rain, have my kids forget stuff for school, cook an amazing recipe from a box that keeps coming every week that I don't know is sending, and just fricking keep swimming.
My cup runneth over......
Happy Wednesday,
Ang
Sunday, October 6, 2019
Feeling normal again.....
Okay, so........LOTS has happened since my breathing blissfully post. All was going well, I was happy and comfortable and then on Friday morning, 9/27, I shockley (sp) woke up at 2:00am with tremendous pain in my sternum. I tried breathing, I tried different positions, I tried all my natural ways of diverting or changing the pain. Jessica, my acupuncturist, helps a lot in this, but I could not get the pain down to a 6 in a scale of one to 10. I woke Grant and told him we have to call Hank. Called Hank. Hank said, "What do you have at home?" We went over my left over meds. Made a plan, but he said, "You know you can always come to the ER." I took a pill and gave it 30 minutes - nothing. Call Hank. Pain is at a 9. "Ang, you have never been at a 9. Let me talk to Grant." And off I go to the ER. I arrive. I am escorted in. Doctors already prepped for me. Ready to give pain meds. Hank is on the way. It is 5:00am. Left texts for the boys - didn't want to wake them. Neighbors are taking them to school for us. I am so bless for my neighborhood and my community. CT scan and chest ray done by 8:00. Start the pain meds. My plumber doc is notified. Everyone is on the case. I am so blessed, but still can lay back without pain. Cannot sleep. Have to get in front of the pain with them meds. I know how to do it, but I am so confused. Hank admits me to the hospital I need an echocardiogram, but they want to do it in the room, not the ER. So, that doesn't happen until 4:30 so I am there for the weekend. Plumber doc looks at everything and says, "Did my procedure help?" I was like, "Dude, you were my favorite person until the narcotics nurse for this crap!" "Well, great, we can do that again as much as you want. (Eye roll by me) But I don't think anything I did started this. I think it uncovered something else or you have inflammation from the procedure. We will find out and will take note for next time." I like the dude - no sugar coating. Hank is not in over the weekend - good for him! And I have a partner of his who he say was much more polite and professional. He was, but not more, just different. Monday, every doc I have ever had reads the scan. New plan. There is a tumor on my heart. Now, it can be seen because of the plumber doc. The pain is probably from inflammation around my heart (kinda like pleurisy of the lung, but the heart). So, I go home Tuesday morning, manage pain until the inflammation goes down, meet with Hank the week of the 7th. He starts me on steroids for my tumor on the heart. Keytruda is done (because it can also help things grow), can't radiate, no surgery. I am taking the blood test this week also to see about other things, but it looks dim right now.
Part of the reason I could blog was because the narcotics were strong and I was loopy as heck. The other part is that I did not want to say it out loud. My miracle drug is off the table, surgery off the table, radiation off the table and it is my frickin heart. My heart....
I am off the narcotics and just back to Tylenol when I need it. I actually had to buy are opiate inhaler in case I accidentally overdosed. All of those are tucked away for another time. My family survived well. The boys got to school, and home. Everyone pitched in so I am grateful. I will be ready for tomorrow. Meals start up again tomorrow. We tried to survive this week solely on home delivered stuff - what a industry that is. Grateful for it, but WOW. To better weeks......
Happy Sunday,
Ang
Part of the reason I could blog was because the narcotics were strong and I was loopy as heck. The other part is that I did not want to say it out loud. My miracle drug is off the table, surgery off the table, radiation off the table and it is my frickin heart. My heart....
I am off the narcotics and just back to Tylenol when I need it. I actually had to buy are opiate inhaler in case I accidentally overdosed. All of those are tucked away for another time. My family survived well. The boys got to school, and home. Everyone pitched in so I am grateful. I will be ready for tomorrow. Meals start up again tomorrow. We tried to survive this week solely on home delivered stuff - what a industry that is. Grateful for it, but WOW. To better weeks......
Happy Sunday,
Ang
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