Some good news and some bad news

You know that I’ve been toying with the idea of going to MD Anderson in Houston.  Many have urged me to go, but I’ve had a bit of reluctance to do so.  I have watched on the AS FB site and noticed that two particular medications have been used for patients with AS.  So, I decided to write those two meds down and ask Dr. Powers about them.  Then two days ago, I got an email from Dr. Powers in response to my last email I sent him with my weekly pictures.  He said in the email that this IBrance pill I’m taking is obviously not working, so we’ll be stopping that after I see him next week and get my CT scan.  And wouldn’t you know it – he said I might want to consider those two drugs that I had on my list to ask him about!  I think that is an answer to my prayer!  Why go to MDA when I can get the same thing through Dr. Powers?  The other meds mentioned on the AS FB site, I’ve already had.   So it just seemed like a God-thing to me.

I’m not exactly looking forward to IV chemo again – and the side effects that go with that, but I don’t like the other option (which is doing nothing).

Yesterday, I went to see Dr. Page in McPherson.  I wanted to see him before seeing Dr. Powers next week.  I thought he should see my head and where I’m at right now since I had not seen him for a while. And I just wanted to talk with him about these two IV drugs, MDA, and just my feelings in general.  I really do like that man.  He is young but seems so knowledgeable.  He is very sensitive.  He talks to me very directly and on my level.  He validates my feelings and my concerns.  I asked him, “If I were totally your patient, would you do anything different from what has been done?”  He then explained his philosophy in treating all cancer patients.  He considers all aspects of care, but looks at quality of life as being the most important.  He said if I were coming in there in a wheel chair, had been losing a lot of weight, and slept 20 hours a day, he would not recommend continue to do anything aggressive, but my quality of life is still really good, so considering continuing to fight this is a very reasonable course to take.  He said he occasionally sent patients to MDA, but for 2 reasons – they needed a very specialized surgery they only do there or for clinical trials.  I don’t meet either of those criteria.  But he did say that if I wanted to go there, he would make the contact, arrange for lodging and all the details, and they would call me.  After talking with him, I felt so much better – just reassured that I was on the right track where I was.  I would get the IV meds there in McPherson and would be monitored closely for side effects and adjust the dosage accordingly.  He talked about the SE of those meds, and neuropathy was one of them from one of the meds – not the other.  These meds would both be used in combination with one another.  The biggest thing is the blood counts.  I’m not very high right now going in, but we’ll see what my blood work shows next week.  It sounds as those it will be very much like the 1^stIV chemo that I took for 7 months.  I did pretty well with that – just mainly the neuropathy.  I'll know what to expect this time with the use of the steroids.  I asked him about those “cold boots” that some recommend to decrease the chances of neuropathy – I sure don’t want that to increase; I have enough permanent damage from that 1^st med.  He didn’t know if that was particularly effective or not, but it wouldn’t hurt.  Eating ice during that last IV chemo certainly kept me from getting mouth sores which was very common with that med.  I’ve wondered if that particular treatment time was not all that effective because I did use ice, and it was too close in proximity to the cancer on my head and cheek.  I’m not likely to have cancer in my feet, however, so it wouldn’t hurt keeping the chemo from getting to the cells there.  

I talked about how I was a bit reluctant to rock the boat because I had been feeling so good for so long.  I’m not in as good a shape as I was when I started that 1^st chemo, and I’m nearly 2 years older!  Two years ago, I was pretty much at the peak of health. (other than having had several surgeries to try to remove this evil beast!)  But Dr. Page reassured me that he felt because my quality of life was really good right now, it was not time to give up.  With my attitude and fighting spirit, I could handle it.

So, after talking with Dr. Page, I just felt a lot better – more reassured.  Now we’ll see what the mood of Dr. Powers is when I see him.  We’ll go up to Mark’s on Tuesday.  My lab work and scan with be early Wednesday morning, and I’ll see Dr. Powers at 3:00.  I’m a bit nervous about what my lungs will show.  I’m trying to get prepared for the worst there, because the last time I was so hopeful, and the news was not good – lung-wise.    

On a lighter note, I finished appliquéing all my squares, and have started sewing the blocks and sashing together.  I'm trying to decide if I want to redo that one block that I appliquéd using my sewing machine.  From a distance, one would never know the difference - but I know it is there, and I don't like like it!  😀 For now, it is in the lower left corner.

Words cannot express how much I appreciate your prayers, all the your kind and encouraging words you give me, and your love.  It all keeps me going!

Many things about tomorrow

I don’t seem to understand.

But I know Who hold tomorrow,

And I know Who holds my hand.

And as always…….I’m in His hands……