So here's the lowdown.
Remember a few weeks ago when sissy's tumor marker numbers were increasing? Well, mom and sissy went online and found that they can spike as the cancer is being flushed out of the body. That was not the case. Sissy is currently on two chemo drugs, Avasin, which attacks only the cancer cells and Taxol, which attacks all rapid growing cells. Tests show that the cancer has mutated and adapted to the Taxol, which means her current course of chemo is no longer working.
Sissy's bone phosphate levels when she started chemo were 400. It's my understanding that these are somehow tied in with her liver enzymes. About a month ago they had dropped to 105. They are now 180. The doctor said that her tumor marker numbers have also increased, but did not say what they are.
THIS IS BY NO MEANS THE END OF THE LINE.
It just means that she will have to change meds. She will remain on Avastin but will now do a new chemo drug which is a pill and she will take it twice a day. This is supposed to have fewer side effects but who knows. The doctor told sissy today that she has had every single side effect ever known from the Taxol. She's a regular 'ol medical marvel! Which in a way can be good because that way if they say she won't get better, well, her body will do the opposite.
Now for the bad news that we already knew.
Sissy again asked her doctor if she will ever be cancer free. No. MEDICALLY SPEAKING she will never be in remission. She will always have cancer. THAT SAID, her oncologist said that he HAS seen miracles. As far as I know, he did not elaborate on that but just that he has seen miracles happen and he does believe in them. He also believes in the power of prayer.
Needless to say, this is a scary time right now. I don't think I'm being a Negative Nelly in saying this. Mom, sissy and I all sat down this afternoon to go over what the doctor said (I stayed home to watch the kids) and agreed that yes, this sucks. This isn't what we wanted to hear. But it's also not the worst news. The doctor said it's ok to cry. It's ok to be scared. It's ok to be upset. So regardless of what other people have told me, have said what I'm feeling is wrong, according to the doctor it's very normal. He also said it could be beneficial for all of us to cry together. We don't always have to be strong. That said, we will all continue to live our lives. What else are we going to do? Not that I owe ANYONE any explanation, we DO have fun. We DO go out and be our "new normal". We DO laugh and just plain enjoy each others company. That will not change, no matter how many times sissy may have to change chemo meds.
New bone and CT scans will be done to see how much the cancer has progressed. She will then be monitored once she starts the new drug. Again, the side effects should be less. We are ALL hopeful of this and provided that sissy feels well enough, a trip to the beach is being planned for our near future.
Are we scared? Hell yeah.
Do we have faith that she will get better? Hell yeah!!!!
Will we stop living our lives? Hell NO!!!!!
I feel oddly peaceful and calm with the news. That's not to say that I haven't cried. I don't often look back and I rarely look forward to the future. I'm living in the here and now since that is what we have at this moment. Things could be better in a year, they could be worse. I have no clue and will just concentrate on right now. Sissy was talking to me the other night, upset that she couldn't remember things Valentina did over the summer. I laughed and told her I couldn't remember things Valentina had done last week. The past 5 1/2 months have been a blur to all of us and that is because we are staying in the moment. I try to document things in Valentina's "baby" book because time does go by so fast and I do forget things.
The past 3-4 weeks have been kind of shitty. Sissy has been in the midst of a bipolar episode for about two weeks which all by itself is difficult. Add cancer and chemo into the mix and it's downright fucked up. But what else do we have? This moment and this moment alone. We are very thankful that she has a medication that helps keep her calm and assists in leveling out her moods. So again, we have much to be thankful for.
In other news, Asa is still sick but as of tonight he is on the upswing. He was finally able to eat something..... and keep it down! He's so skinny that he doesn't have room to lose weight and yesterday when he went to the doctor he had lost 6 pounds. He's down to 34 pounds. It's hard to get him to eat so we have our work cut out in trying to get him to gain weight.
Valentina has also been sick but as long as she is on Tylenol and Motrin, her fever stays at bay. And once the medicine kicks in, you canNOT keep my girl down! It takes about 45 minutes and then she's running around, dancing, playing and acting normal, other than that sickness in her eyes. Last night when she woke up at 11 pm and I couldn't get her back to sleep, I did something I've only done once before, if that; I brought her in to bed with Norm and I. She woke up at 4 am crying and feeling shitty. Her fever was back up to 102.5 so we got up and hung out on the couch. Once she started to snuggle with me I suggested we go "sit in bed". Sure enough she fell right asleep and slept until 7:30 am, which for her is like sleeping in until 10 am. She has also taken naps the past 2 days which is rare. Tonight, however, she was a pill to get to sleep. Normally it takes me about 10 minutes, but tonight? Tonight it was an hour and a half. I started praying that she would just go to sleep as Valentina would cry "I NOT GOING TO SLEEP! I DON'T WANT TO GO TO BED!" and I was getting to the end of my rope. I started praying and told God I also needed a sign that sissy would be ok. I told God that if Valentina fell asleep in the next five minutes then that would mean sissy would be fine and go on to live a long life. Granted, this was after 90 minutes of trying to get Valentina to sleep, but she conked out in 3 minutes. I know this because I counted the seconds on her clock. I know this isn't scientific, hell nothing about faith and belief in God is scientific, and maybe later on I'll chalk it up to coincidence, but tonight? Tonight I take it as a sign that yes, sissy will be ok. After all, only God knows what the future holds and tonight God told me things will be fine.