I got 3 doses of the Avastin, and could tell it was not working either. So Dr. Page looked long and hard to find the next step. It is a drug I’ve never heard of – Vinorelbine. It is given IV push, after a steroid and an anti-nausea drugs are given IV. It is given once a week for three weeks, and then off a week. I’m back to lab work weekly. The common side effects are nausea, effecting the lab work, fatigue. I took my first dose last Tuesday. I can’t tell yet if it is working after just one dose.
I can tell you that things have pretty well exploded on my forehead. The “horn” up on my head is really sticking up, but it has not bled for about a month The big bleeder is from the tumor just above my nose and left eye. The results are that my left eye is very involved – two tumors and very bruised and swollen. So, I mostly see out of my right eye – which is also involved. You’ll see below the discoloration on the right side of my face. I’ve had to put a dressing over the lower tumor because it continues to drain and build-up of serous drainage. I have to change it two to three times a day and at least once in the night. So, I don’t ever get a whole night’s rest. I usually get up between 9 and 10, eat breakfast and go back to sleep in my recliner until about 1 to 2 in the afternoon. I don’t really feel like “getting up” until about 3 til 4. Eating times end up being pretty crazy around here!
It was a great week this week having, Jeannine and the girls come from Wed-Sun on their spring break. They went to church with us this morning and left about 1:30. Mark was in and out during the week. He’s looking for a house in Hutch and has to be out of his house by the end of the month. The price of the rent just is too high there. He can work from home pretty much with a trip or two here and there. He’ll probably be as close to the Wichita airport from here as he was to the KC airport there.
The weather has finally turned to spring here – not warm, but at least the snow has stopped – I think. It has snowed here in April before, but I hope we are over the nasty cold that we’ve had all winter here.
Tues
I didn’t get far Sunday night – wasn’t very inspired to write I guess.
Yesterday (Monday) was an exciting day. I got up exceptionally late – 10:30. I was in the middle of fixing my breakfast and felt like I needed to take my BP. I got to my recliner and my BP was 76/53. I managed to get to the bathroom and put my head down. I stayed that way until I felt like I could get to the bed. I knew instantly that I needed fluids. Guy had to literally dress me. I kept telling him to get the purple shirt – “get the smurpple, get the smurpple…” He finally figured it out. I could not talk him through the rest! He finally figured that out, too. What a pair we were! J I got there and got my fluids and finally started feeling better.
I took my 2nddose of this new IV med this morning. Before taking I met with Dr. Page (in McPherson). I shared with him the email I had just received from Dr. Powers (in KC), Here is what he wrote:
I hate to be the one that says it, but I think its time to let hospice into your life here soon. They can help in so many ways... because the pain is getting worse, I think we really need to switch philosophies to more supportive care, if you don’t see any change with this chemo, even after the first 4 weeks. This would mean no more chemo, but that’s ok, because these last few weeks of pictures is showing that the systemic treatment isn’t working anymore. I just want to make sure you are cared for effectively, compassionately. Hopeful that you can get some more quality time...
Ben
Dr. Page agreed with Dr. Powers. He did talk about palliative care and how that might be helpful to get on board now. It is just a step before hospice. They could help out where needed and help me eventually transition into hospice. But for right now, Page felt like doing this procedure Friday might help to relieve some of the pressure and misery if they could get the bleeding to stop.
This procedure I’m going to have in Wichita is called embolization. They will go in through my neck, shoot some dye into my head to show up the vessels. They will then locate the blood vessels that are feeding these tumors and zap them to try to stop this bleeding.
And in the meantime – unless I’m ready to throw in the towel now – we would continue with the current chemo to give it a try to work. So, I went ahead and took the treatment today and got along fine. I can see little places here and there that I feel are receiving the benefit of this chemo. It’s just not kicking it in the head. But, then I guess I’m a little impatient….. J
I have to face the music – at some point, I’m going to have to reach the end. I’m just now sure when that is…..I don’t think I’m ready to look at it yet. This is all, of course, not taking into consideration God’s divine intervention. I still ask Him daily, with faith believing.
Please pray this week for:
PEACE as I go for this procedure Friday (and that it works!)
This current chemo to WORK
God's divine intervention
Wisdom in future decisions
As always......I'm in His hands.......
Scroll down for pictures
I have my own little unicorn horn - it's just sort of misplaced! 😀
You can see a tumor just in the inner corner of my left eye, just below the big one over my nose.
This is the area that I keep bandaged - in the triangular area in the 6:00 position. You can see two little places that are about to bleed.
My right eye involvement. I can open that eye well. There are no real tumors in this area - just discoloration.
