Phase XVI
On my next doctor visit we brought a couple of cases of my new favorite supplemental drink to the Infusion Clinic for people to try. We brought the two flavors that I love. The month of May has 5 Tuesday’s in it so this month I will get Chemotherapy twice. Oh boy…
My appointment is on May 1st normal time so Lynn and I bring all our stuff for the day plus the two cases of Orgain… Lots to carry… My numbers CA were disappointing to say the least. Damn CA-125… I try to not get discouraged by the numbers it is hard… I feel good and that is what I gauge my health on, not the numbers. Well I try real hard to focus on that. Today CA-125 increased now up to 3499… I will be focusing real hard on how I feel and not the numbers. Yes, I will admit that increase caught me off guard. It is back to where it was back in August 2011. Sigh this is probably why I have not written anything on my blog in 4 weeks. Simply letting my emotions, thoughts run their course and allow me to stay focused on treatments and life. Today we decided to switch the Cisplatin and go with Carboplatin, yes, no one is comfortable right now with the latest number. Seems when we switch I experience a nice decrease. I am good with that… We are doing the Avastin, Doxil, and Carboplatin… We discussed why I was taken off Carbo to begin with. I said because my white and red counts take a beating on Carbo, so we thought cisplatin should be as effective and it would give my blood a rest. If my next visit does not show an improvement in my CA numbers we will move to different drugs in my doctors bag of tricks. I am good with that and feel good about the treatments so off we go. The up side with this infusion is its quicker then having cisplatin. So we get some of our afternoon back that is cool… We bought lunch preparing for the longer treatment, which is okay because we took it home and had lunch there. I took a good long nap… It is tiring sitting around getting infused…
The next couple of days are, yep you guessed it my Steroid high days so I worked… That really helps me, keeping busy and not focusing on those damn CA-125 numbers. This go around the treatment tuckered me out; I slept a good part of Friday and Saturday. That is a good thing as I did get a Neulasta® shot on Wednesday as Carboplatin always knocks the hell out of my blood counts. So we decided to help bolster the white cell count with the Neulasta®. That makes you achy… I try and time that shot with my down day on Friday and Saturday so I rest a lot. When I woke on Friday, I was a bit achy so I took an ibuprofen, which helped take the edge off… Saturday too same thing, took an ibuprofen every 4-6 hours and it got me through the day, that and eating every 3 hours… Keeps my stomach busy so I don’t have to take any other medication for sickness… That is really good in my book; I am fortunate we have this down to a science… Eating every 3 hours and Miralax every day… Sunday I am on my upswing and starting to putter around again… Next weekend will be busy and I want to well rested and ready to go… It is that time of year…
On Saturday one of our oldest nephews graduated from UB with a dual BS in Chemical and Bio Engineering degrees… That was sooo much fun to see Mike graduate after all that hard work… Right after his graduation one of our younger nephews made his 1st communion so we drove to St. Thomas in South Buffalo for that. The timing worked out very well we made it to both and I took lots of pictures… SO much fun. After the 1st communion we are a celebration for Mike’s graduation at a local bar and restaurant we all go too… Took lots of pictures there too… On Sunday we had the 1st communion party and Mothers day…
On Sunday morning I woke up at like 7 am… Really, I am thinking, now what do I do, everyone else is sleeping. So I went downstairs and downloaded all the pictures. I put Mikes graduation and Andys first communion into slide shows and attached music to them. They came out great, next I have to figure out how to copy them to DVD’s… When Megs woke she bounded downstairs and came into the Florida room where Lynn and I were having coffee. She said I know you said not to get you anything because of the coffee maker I bought, but when I saw this I had to get it for you… The mother’s day card was so cute. It was a little girls’ toothless smile… Inside she wrote a note that still brings tears to my eyes… “You are the strongest woman I know! You are an inspiration to so many people! When I grow up I hope I’m half the woman you are!...” Yeah I am tearing after I read that <smile>. With tissue in hand I opened the box she gave me. Inside is a charm with a ribbon of hope, inscribed on the charm is the word “Believe” on the back “Love You”. Oh yeah by then I’m sobbing, needing the whole box of tissues <laughing>, not just tears of joy, but sobs of joy… Megs recorded me opening the gift and she recorded like 15 seconds of it, cuz she was crying too and we laughed that she didn’t want anyone to see she was crying with the camera shaking so she stopped recording it… It was so thought full, there is a picture of it on my blog… I wear it every day, except if I am doing yard work of course or something like that… Whenever I look down and see “Believe” I am reminded how precious each day is and that I am here doing my thing, I am very Lucky and it is all good!!!
The 1st communion party was a lot of fun… Andy was sooo cute, he read each card, we forgot to print our names on the card and not write them out, oh well, we will have to remember that next time we give a card to him…
On Tuesday I received a call from the infusion clinic… Yes, that generally means something is out of wack from my 2 week blood draw. My red cells are not doing so well. My hemoglobin is down to 7.4 (should be 12-15) and my platelets are 27,000 (should be 90,000-150,000). Laurie asked if I am tired and bruising easily… I said, I feel okay, now that she mentioned it maybe I am a bit tired. <smile> She said the doctor is recommending I get a transfusion, which I agree. My hemoglobin has been 7.4 before but my platelets have not been that low before. So that concerns me. I planned on taking Thursday and Friday off, so I arranged to have the blood transfusion on Friday. Since I planned on having a day off that day I will bring only fun things to read and no work… I opted for the 7:30 am appointment… This way I am home by 2-3 ish… Still have some of afternoons and I have a baby shower to go to in the early evening… Lynn is having some people over for dinner so I can make sure the house is ready for guests before I leave…
On Friday I arrive at 7:30 am with coffee, breakfast and snacks in hand. I will get lunch there, which has been good in the past… This will be my I think 6 blood transfusion since this adventure began. The nurses know me there now too, not that they are happy to see me back… It is what it is… The blood transfusion goes just fine and I feel better and have nice color in my cheeks... The last two blood transfusions I have felt better after the 1st pint. After the 2nd one was done the nurse disconnected me and said you may go when you are ready. You are a frequent flier here and haven’t had any problems in the past… I have become a frequent flier at a number of medical establishments… My lab, I am there every 2 weeks normally, right now I have to go more often with my doctor watching my platelet count closely. When I am at the lab I sometime get the newbie’s doing to blood draws. I don’t mind, I have good veins, I have my mediport to thank for that… The one newbie attempted a vein that really shows itself in my left arm… The techs I always get generally don’t go to that one; they draw from the one next to it that you can feel, not see. Well the newbie got a lesson, she tapped into the vein that showed itself nicely then the needle fell out of the vein. I like to say she stabbed it with the needle and it went Ahhhhhh and shriveled up <Grin>… She was so apologetic… I told her it was okay, it’s not the 1st and it won’t be the last… The next newbie I got, she was eyeing that same vein. I said I wouldn’t if I were you, that one will shrivel up when you stab it… Everyone here always goes to the vein next to that one you can't see, but you definitely can feel… She looked at me funny, and the tech that was working with her say, she is a frequent flier here; to me she said you are here what every two weeks. I said, yes I am… < laughing>… This newbie took my advice and avoided the vein that teases them… Smart lady… plus when she drew the blood I didn’t even feel the needle, very good job…
Well I got another call from my doctors’ office; my platelets are down to 26,000… Got the in case of an emergency to directly to the emergency room, yes I will… Okay still no running with scissors or playing rugbie… I have to go for more blood work on Monday… And guess what? No Call on Tuesday… Yippee my platelets are finally on the up swing… Go bone marrow, pump out those HEALTHY red cells… Doing the happy blood dance… Gotta keep it pumping, don’t want to be delayed for my next visit… Have blood work on Tuedsay May 29th for my doctors’ appointment on May 30th… Gots lots of ground to make up here… I am feeling really good and very alive…
