Test results and visit with Dr. today

I got to the cancer center at 11:00.  The infusion center accessed my port and drew my lab work. Then I went for the CT scan.  As many of those as I’ve had, it still feels so weird when that contrast goes in my IV. It starts in your mouth and moves down your body.  It feels for the world like you have wet your pants!  It makes me feel a little short of breath for just about 60 sec.  That’s the only part I don’t really like.  After that I had to drink, drink, drink water to flush that contrast out of my system.

We went to lunch after that, and then waited…….and waited…..until 3:00 when we met with Dr. Powers.  When he came in, he gave me a big hug.  He always gives me one at the end of the visit, but this was a 1^st at the beginning.  He got right to it.  “Your lungs have continued to progress with the cancer.”  I knew that would be the case, because my rib had started to ache again for about a week.  I didn’t remember injuring it, but I suppose it is possible – could have just turned wrong in the night.  Anyway, I knew that had not healed, and I was expecting the worst this time.  However, it was not as bad as I had expected.  One of the spots had grown from 1.9 cm to 2.9 cm. That was the worst one.  I think there are 4 or 5 lesions.  A new small one had developed, but one of the existing lesions had not changed.  I asked about my occasional coughing, and he said it was probably most likely due to allergies (which I have), because these lesions were all peripheral and not impinging on anything that would make me cough or be short of breath.  So overall, I felt pretty good about that. I really thought my lungs would be full of lesions, given how my head has been affected.  

My lab work was better than two weeks ago, but my counts are still really low.  The improvement was good news for me.  My WBC went from 1.9 to 2.6.  My ANC (susceptibility to infection) went from 0.9 to 1.3.  It needs to be 1.5.  So I was getting closer to that.  My Hgb went down a little bit – from 10.1 to 9.9.  That wasn’t too much of a drop.  My platelets went from 91 to 136.  The lower level for those is 150.  My liver enzymes are still within normal limits.  AND there are no lesions on my liver!  Everything else is pretty much normal – except for my head and face and lungs.

I told him I had felt so good for about 6 months now, and I wasn’t looking forward to anything rocking my boat, but I was ready to go for these two new drugs (the drugs are not new – just new to my treatment regimen).  He said they are usually given with one one week and then the two the next week and then off a week.  But he said that sometimes they give the two on the same day, and then off the next week, then the two the next week, and off a week. He said that he found giving them together seemed to be tolerated better.  The one drug tends to make one feel like they have the flu for 72 hours, so he will recommend steroids for 3-4 days after the treatment rather than just one day after to counteract those side effects.  Other side effects are gi symptoms, fatigue, neuropathy (UGH!), eye issues (UGH since I already have eye issues), rashes, etc.  The effects are cumulative.  (UGH!) He said, “It WILL rock your boat!” I think I can handle it – with Gods help!  He said he would have me go 4 rounds – that would be 4 months at every other week.  Then he’ll see me back in his office.  I’ll get the chemo at the infusion center in McPherson under the direction of Dr. Page.  I’ll continue to send him pictures weekly and tell him how it’s going.   I’ll start a week from Friday on the 16^th. I’m not to take any more of this IBrance, so it will give me a week and half for my blood counts to bounce back a little more.  I’ll have one treatment before Thanksgiving, and be off Thanksgiving week.  I should be fine for celebrating Thanksgiving with my family.  By Christmas? That might be a different story, but I’m going to keep a positive attitude about it.  With God’s help and y’all’s prayer, I can do this!!!

He took pictures of my head and felt my forehead.  He was surprised that the whole area is spongy feeling. He thought it would feel hard. Overall, I think he was pretty amazed at how well I’m doing.

On a side note, yesterday as I was coming in Mark's front door, I didn't get the inside door open enough, and when I stepped inside the heavy storm door, I ran head-long into the inside door - BAM!!!!  Right directly on the two scabs!! You want to talk about PAIN!!!!  I was just sure I broke that whole area open, but there was no blood.  Thank the Lord!!

Dr. Powers even said that after this next round of treatment, if it was not all that successful, he has a couple other chemo drugs that are fairly new but are FDA approved, but not much data collected on them, and he would be willing for me to try them if necessary. SO, I am not headed down the dead-end street that I thought was going to be.  As long as I can hold on, they keep coming up with new meds and new ideas. Unfortunately, the up and coming immunotherapy is not appropriate for me.  The stem cell treatment, takes you to death’s door before it begins to help, and that is not for me either.  I’m not up for anything like that.  Don't believe I could survive it.

We’ll just play it by ear and see how it goes.  I told him as long as my quality of life was pretty good and there was something I could do, I’m going for it.  I told him that I knew I was still here for a reason – some have even shared the reason with me.  God was not through with me yet; I still have work to do.  I told him that God’s plans are not man’s plans, and with everyone praying for me, that’s why I’m still here.  

He said he was going to the big angiosarcoma conference in Rome Italy next week and he is going to be presenting my case. If someone comes up to him afterward and says they have the latest and greatest for me, he’ll get in touch with me immediately.  And if he discovers something better anywhere along the way, he’ll not be afraid to contact me.

So, I say all this to say that I left his office feeling hopeful. I’m not looking forward to having “my boat rocked”, but it beats the alternative!

As always, I continued to thank you all soooooo much for your prayers. I know they keep me going and help to give me peace of mind through it all.

As always…..I’m in His hands…..

PS  Hope to make it home safely tomorrow through the predicted snow!

You can scroll down for pictures.

That whole area is basically what I smacked into the door! 😏😜

 The lower part of my cheek is really bulging out now.

My left eye is really involved (swells).

My right eye is actually better than it was a week or so ago.

You can really tell how swollen the whole left side of my face is.