On Saturday I stayed home with the little girls while Ron, Josh, Cyrise and Reece went to the air show at Randolph. When the girls woke up from their naps, we went out on the deck and watched the Blue Angels fly over our house. We could see a lot of their maneuvers and it was fun. Cammie would say, "Yay, Angels!" And when they would fly out of sight she would hold out her hands and say, "Where?"
The others had fun at Randolph, and an Express News photographer took a picture of Ron and Reece, but we didn't see it on the paper's website on Sunday.
On Sunday the kids painted their Halloween pumpkins. Cyrise had them put their handprints on them, then let them paint the other side with paintbrushes. They had a ball! Ron and Josh carved the big pumpkins for them.
One of the girls gave Gina chocolate chips. She had chocolate all over her face. Sweet. :o)
Today Reece and his parents went with his class to the pumpkin patch. I hope they are having a ball! This is Reece's first time riding on a school bus. It's only 53* right now, but will warm up to a perfect 72* later. They will have a chilly visit with the pumpkins. :o)
My doctor called yesterday to let me know that my CT/PET scan looked good in the preliminary report. He was very pleased. Next week I'll see my new doctor, and have appointments with the pulmonary clinic, ob/gyn and opthalmology, in preparation for the bone marrow transplant.
*Later in the day*
Ron was home today, and we stayed with the little girls while Josh and Cyrise went with Reece's class on the field trip. The girls were good for us. The field trip lasted all day, and Reece enjoyed it, but was tired when they got home. He said it was cold, too. (I don't think it ever did warm up to 70*). Reece liked riding on the school bus. They saw farm animals, went through a hay bale maze, and rode on a wagon pulled by a tractor for a hayride. And they brought home a pumpkin. They were supposed to build a scarecrow and do a couple of other things, but didn't have time.
After they got home, I had to run over to the hospital for labs. Dr. B always likes to be sure my blood levels are okay for over the weekend. I feel fine, so I expect they are okay. Ron ran in at Gran's to give her her meds. She was doing great.
Not sure what the weekend holds. Reece has decided to be GI Joe for Halloween. We need to get him a black or green t-shirt. He has camouflage pants and a camouflage hat. He will wear dog tags and black underneath his eyes. I think he will be cute.
There will be an air show this weekend at Randolph AFB, near where we live. The famous Blue Angels will be featured at the show.
They have arrived, and have been flying around today. They're so LOUD! They have flown right over our house several times, and I rush to look out the window every time.
I put the little girls down for their naps, but there's not much chance that they are asleep. The noise of the planes is very exciting. I told them that the planes might fly over and make loud sounds, but they were to stay in bed and try to go to sleep.
I wonder if Reece and his classmates got a chance to see the Angels while they were at recess today. I'm sure the noise interrupted their schoolwork.
I had my PET/CT scan yesterday morning, and should have the results tomorrow--Monday for sure. I've been feeling okay, so I hope the scan shows no cancer. I have an appointment with my "new" doctor next week on Thursday.
That cold front has not quite reached us yet, but we're supposed to have a 30 degree temperature drop later today. It's 79 degrees right now. I'm praying for rain.
Kelly came by yesterday to pick up Gran's meds. I went with her to Gran's, and then we went out to lunch. They built a new Cheddar's near us recently, and it's always busy for dinner, but it wasn't bad at lunch time. We both had a lunch combo of loaded baked potatoes and Caesar salad. It came with a yummy roll, and I had mango tea with mine. Kelly had mango lemonade. It's always fun to spend time with Kel, and I had such a nice afternoon.
Hope your weekend was peaceful and good. Ours was quiet. Reece was happy that he didn't have to go to school. :o) He had a good weekend, but was okay with going back to school this morning.
I heard from Dr. B this morning. I was texting him to let him know I was on my way to have my labs done when I got a text from him. The text in part said, "Just wanted to let you know the most recent fluid collection was negative. Good news." That was the spinal fluid collection that he did on Thursday. I'm glad it was negative, but I'm eager to see what the PET scan will show on Wednesday.
It took less than an hour to go to the hospital, get the labs done and come home this morning. I don't think I'll have to go back for any sort of transfusion, as I feel pretty normal today. The Rituxan doesn't seem to make me as sick as some other kinds of chemo.
We're having great weather. It still gets hot, but only in the high 80s instead of the 100s we were having. Nights and mornings are cool and comfortable. In fact, I get cold at night. We still need rain desperately, and may get some on Thursday, along with a cold front coming through.
Reece's class is going on a field trip to a pumpkin patch later this week, and his parents are going along, too. I know they'll have a good time. His class is also carving pumpkins, and will have a parade of children in their costumes for Halloween. The costumes are supposed to be characters from a book. I don't know what he will be, but I'll be sure to post a picture. :o)
My doctor came by when I was getting the chemo today. He wanted to take another spinal fluid sample from my Ommaya port. He said that the sample he got on Monday came back positive for mantle cell lymphoma. He said that it's possible that he got some peripheral blood in the sample when he put the needle into my scalp. He said, "I didn't mention it, but the sample looked a little cloudy." When he took out the sample today, he said it looked very clear. I don't care where the cancer cells came from, whether they are in my spinal fluid or blood, I don't want them anywhere in my body. Damn cancer.
The chemo that he put in my spinal column on Monday may have killed the bad cells that were there, and maybe that's why it was clear today. He's been using Methotrexate in the Ommaya port, but the backup plan is to also use Rituxan in it later.
I did fine with the Rituxan today, but as usual my afternoon was shot because all I want to do is sleep when I get home. So that's what I did. I didn't have to have platelets today.
I have a PET scan scheduled for next Wednesday, and I'll meet with one of the other bone marrow transplant doctors because my dear Dr. B is being deployed to Afghanistan. I am just heartbroken to think of him going there. But the doctor I'll see is the head of the whole bone marrow transplant unit, so I'll be in good hands. Dr. B is leaving next month, around Thanksgiving, so he will still be here for awhile. I'm wondering if he wants to get the transplant over and done with before he leaves.
He said today that they had decided not to worry about trying to coordinate my treatment with my sister's bone marrow donation, but just to collect her cells and freeze them until I'm ready for them. The ideal situation would be for me to finish my chemo treatment at the same time her cells are collected, and deliver them fresh to me, but that takes a lot of coordination.
Johnnie, my bone marrow donor, will be here for about 2 weeks. I'm so grateful that there is no problem with her being away from her job and family for that time. We still don't know when she is coming, but probably within the next 2 or 3 weeks.
I saw my radiation oncologist on Tuesday, and he was very pleased with my progress. He said the strength in my legs is almost back to 100%. Of course he had not seen the results from the spinal fluid yet, but I'm not scheduled to see him again until February.
Dr. B promised to let me know what he finds as soon as possible, so I'll let y'all know when I know. Meanwhile, your prayers are greatly appreciated! Thank you.
Latest news on the cancer front is that my sister Johnnie is a perfect bone marrow match for me! We still don't know when the bone marrow transplant will take place, and I don't know all the particulars about what we need to do next, but I'll keep everyone updated. I'm very thankful that Johnnie is a match and is willing to be a donor for me.
It's been a trying week, and next week promises to be even more stressful, with Mom needing to go to the lab on Monday before her doctor appointment the following week, an appointment for me with my regular oncologist on Monday, an appointment with my radiation oncologist for a 6 week follow-up on Tuesday, and the usual labs on Wednesday, and chemo and probably platelets on Thursday.
When I saw my radiation oncologist the last time, after I completed the radiation therapy on my spine, he said that he hoped the next time he saw me I could walk into his office. I am going to surprise him and do just that on Tuesday. :o) I have been practicing walking around my room without my walker, and I'm doing fine. I'm still a little unsteady and wouldn't want to go on any long hikes or shopping expeditions, but I'll be able to walk into his office.
I was under the mistaken impression that I wouldn't be receiving chemo through my ommaya port, since they didn't find cancer cells in the spinal fluid they withdrew the first time they used it. I just won't be getting it weekly. They would have given it to me through there on Thursday, but I was sick, so my doctor will do it on Monday. Each time they access it they will check the fluid again for cancer cells.
I'm on antibiotics for this respiratory thing I've got. I was so sick on Thursday; I vomited in the car on the way to the hospital (thank goodness Ron had a plastic bag), then again after I took the first of the antibiotics and while I was getting the chemo. My heart rate was so insane when they did my vital signs that they immediately did an EKG and sent me for a chest x-ray. It wasn't pneumonia. If it had been, they were going to put me in the hospital.
We were at the hospital for 8 hours on Thursday. When I finally got home I came straight upstairs. The littles wanted to see me, so they came to my room. I was sitting on the couch at the end of our bed, and when Reece walked in he said to me, "Do you feel bad, baby girl?" Then he came and put his arms around my neck to give me a hug. It was so precious! Then both Aubrey and Camryn came over, smiling and wanting a hug. They are so sweet. It made me feel better right away. :o)
My buddy is home from Rockport, and my heart is happy. :o)
I have missed all of them. Unfortunately, they are all still sick with colds--runny noses and chest coughs. I'm also coughing.
Reece caught a perch and a yellowtail, and like most fisherman, he exaggerated when he showed me how big they were. :o) It was cute. He is so happy to be home, but he loved being in Rockport.
Ron and I were not home when they arrived. I went to get my hair cut, then we went over to Mom's. Cyrise said the first thing Reece did when they got here was go out and see the puppies. He loves them, and they love him.
When I got here, he wanted to be outside. My tea olive tree is blooming like crazy. It loves the cooler weather, and of course the rain we just got. The whole back yard smells like heaven. I think this is the most blooms I've ever seen on it. So we enjoyed sitting out there for awhile.
Then we came upstairs and he watched a couple of videos while I stole a few snuggles. Now he has gone with his Papa to get a snow cone at HEB. I heard him tell Ron, "I'll get a blue coconut and you can get a margarita." :o) He missed their snow cone runs while he was gone.
All of them look so cute. They went to the beach today after they checked out of the hotel, and they all have pink cheeks and shoulders. They always stop at the beach on the last day, and have a picnic and feed the seagulls.
Because of the rain the fire ants have come out, and Aubrey stepped right into an ant hill today. Cyrise said they ran up her legs immediately. She stripped her clothes off and dipped her in the pool right away, but she still has quite a few bites. Ron put some Benedryl on them. I hope she will leave them alone, but fire ant bites are miserable.
Photo of sunrise in Rockport taken with Ron's iphone.
The guys got home from their father/son fishing trip yesterday (Thursday). They had a good time; didn't catch too many fish, but Josh did get an 18" trout Wednesday night. I'm glad they got to spend some precious time together.
When Josh got here, he loaded up the truck with his family and all their stuff and headed right back to the coast. The kids were so excited to be going to Rockport. I hope they all get over their colds while they are gone. It sure is quiet here without the four kiddos. They will come home on Sunday.
Jason spent the night here, and is headed home today. Ron is driving him to our halfway meeting point where Jason's wife will meet them. They just left, and I am home alone for the first time in months.
Ron and Jason went over to Gran's last night, and they were able to get her TV working again, thank goodness. We need to have her cable box replaced, but they hooked the TV up directly to the cable, skipping the box, and at least it's working now.
Yesterday Kelly took me to BAMC where I thought I'd receive platelets and chemo through my ommaya and through my chest port. It turned out that I didn't need platelets (yay) and I only received the Rituxan through my chest port. I texted my doctor, mentioning that I didn't receive the other chemo. He called me back to say that the reason they didn't give me the chemo into my spinal fluid is that when they drew out spinal fluid last week, they didn't find ANY cancer cells in it. So I didn't need chemo into my spinal column. (Yay again)!
Although I still have the cauda equina syndrome, recently I've noticed that my balance is better and I can walk a few steps without using the walker. I'm praying hard that my nerves are repairing themselves. From what I've read though, it takes a long time for nerves to heal.
(Picture of the kind of trout the guys are hoping to catch tonight. This was taken last year at the coast).
The guys caught some trout last night, but they were not keepers. Jason talked to a fisherman who told them that the little ones were all they would catch in the early evening. He told them they need to fish about midnight to catch the big ones. So they are going out tonight. I hope they all catch some nice big ones. But they are having a good time and enjoying being together, fish or no fish.
Here at home, all the kids are sick. Reece has a terrible, deep chest cough and his little nose is running constantly. He had a fever last night and stayed home from school today. The little girls had a fever today, and have been little pills. Poor Kelly; she, Cyrise and I are almost certain to catch whatever virus they have picked up. As my doctor says, "They are little germ factories."
Kelly has been cleaning and reorganizing my bedroom. It already looks so much better, and she's not finished yet. She's an absolute angel. Her husband works not too far from our house, so he has come by the past two evenings after work to see her and the dogs.
I haven't spent much time with my dogs lately, and they miss me. So yesterday I went out and sat on the bench while Kelly let them out of the dog yard one at a time. They both came straight to me and jumped up next to me on the bench. They loved on me, and I loved on them and brushed them for about 30 minutes each. They still think I'm their mom, and that they are little puppies that can sit on my lap. :o) I love them so much.
Cyrise made salisbury steak, rice and veggies for dinner last night, and it was such a beautiful evening that we sat outside to eat. The kids thought that was fun. It's been awhile since we ate outdoors. It was nice.
Tomorrow I'll go back to the hospital for labs, and then Kelly and I will stop at Gran's. Kelly said Gran's television is not working right, and she couldn't get it fixed today. I think I know what is wrong and can fix it. Gran is always messing it up by pushing the wrong buttons. I hate for her to be without her TV; I know she is missing it. Sometimes she just turns it on "for company."
Picture from April, 2010--our last trip to Rockport.
It's been awhile since I posted. The week sure went by quickly.
Last week on Thursday I had labs, received platelets and had my first round of chemo. They gave me Rituxan through my ommaya reservoir and through my port. I tolerated it well, just a little itchiness in my ears and scratchy throat. I did have some nausea during the following days, but not too bad. I slept most of the day Thursday, from the benedryl I think. They always give benedryl and tylenol before transfusions and before chemo.
I haven't been back to the hospital since then. My doctor believes that I'll need platelets again in about a week, so I'll do the same things next Thursday, except that I'll have labs done the day before. I'm taking all kinds of medicines, of course. Some of them make me feel sick.
Because the radiation I had earlier has messed up my bone marrow's ability to make cells, my doctors want to go ahead with the bone marrow transplant sooner than expected. Since I can't use my own cells this time around, they asked if my sisters would be tested to see if they are a match for bone marrow. They mailed a kit to my sister in Kansas, but they gave me the kit to give my sister Sandi from Bryan since she was going to be here over the weekend.
Sandi called me at lunch time today to let me know that she had done the labs and they were going to send it back today, so my doctors should have it tomorrow. There was a FedEx envelope to overnight it back in the kit. She is really hoping that she's a match; she wants so badly to be able to do something to help me. I am blessed to have so many people who love me.
It was nice to have Sandi here this weekend. She stopped on the way in to visit, before going on to Mom's. Then she and Mom came over in the evening for a visit. Our oldest son, Jason, also arrived Saturday. His sister-in-law gave him a ride to San Antonio, so I got to visit with her and see her two oldest children in the afternoon. That was such a pleasure. So Saturday was a really busy day and I was up and down the stairs several times during the day. By evening I was worn out.
On Sunday Ron, Jason and Josh left for Rockport. They have been planning a guys only fishing trip ever since last year when we were in Rockport. Ron almost cancelled because of my treatments, but I told him I wanted them to go. Our sweet Kelly volunteered to come and stay with us while Ron and Josh are gone. She drives Reece to school, goes to Grans and will take me to my doctor appointments. She and her dogs arrived Sunday evening. I know it's not comfortable for all of them to be here; she and the dogs are all homebodies. But she doesn't care; she just wants to help. And she is! I don't know what we would do without her.
We've talked with the guys several times, and they are having fun. They haven't caught any fish yet, but have gotten a few crabs. Josh said they were either too little, or nasty looking with barnacles on them, but they will keep trying. :o) Jason had to buy a new fishing pole because one of the guides on his broke off. Today when they called Ron and Jason were sitting on the porch in rocking chairs, just enjoying the beautiful weather and the Gulf. Josh had gone grocery shopping.
Our weather here is pretty, too. It got cold last night (in the 50s), but is in the mid-eighties today. Kelly and Gina are napping, Reece and the little girls are outside with the dogs, and Cyrise is downstairs keeping an eye on them. It's fairly calm and quiet right now. I told Reece he is the man of the house since all the guys are away. :o)