Sheltered

My sister in Kansas sent me this picture in an email yesterday. Isn't it adorable?

Psalm 57:1 In the shadow of your wings I will make my refuge, until these calamities have passed by...

Home Sweet Home!

I'm home from the hospital. Got here last night around 8 PM, and it's so wonderful to be here! The kids and the dogs were glad to see me, and vice versa. :o)

I'll have radiation every day for the rest of the week, and each week day of next week. I've had 5 treatments so far, and will have 7 more. Then we'll see where things stand. The treatments are targeting what we believe are abnormal mantle cells in my spinal cord. I'm praying that when the cancerous cells are killed, my nerves will heal and I'll regain the use of my legs. I can stand and move about with the walker, but I want full use again!

I bought new sneakers today that will hold some braces they gave me. They help hold up my toes, making it easier to walk. They look funny, but I don't care. Love the shoes--they're cute. Kelly was with me, and we bought her the hiking boots I'd promised her for her birthday. She has the cutest little feet, and the boots look adorable on her. Also got a couple pair of lightweight sweatshirt material capris that just pull on. Much easier for radiation.

Josh took me to the hospital for my treatment this morning, then we met Kelly at Great-Gran's for lunch. Gran is doing well, looked great, and had been busy cleaning. She was concerned about me, but not unreasonably so. I was so happy to see her doing so well.

We drove the truck, which is a bit high for me to get into in my current state. I thought we might need a step stool so that I could climb in, but Josh just picked me up and put me in, no problem. It would be wonderful to be so big and strong!

Those scrubs I'm wearing in the picture (from a few days ago) say, US Government Property, stolen if removed from premises. I don't why, but I thought that was so funny. I look so happy in the picture because I'm talking to Reece on the phone. :o)

Kelly's truck battery gave out while we were out shopping for our shoes. She didn't feel well anyway, and had a miserable afternoon. They did manage to get it home safe and sound (her husband came by to help out). Kel, take care of your cold, rest and relax! I love you.

I watched the kids swim this evening when Ron got home. They are doing great! Reece is a little fish, and Aubrey is not far behind.

Thank you friends and family for your love and prayers. I don't know how I'd manage to get through this again without you. I love you.

Just Another Day In The Hospital

Another day of tests. I was supposed to have a PET scan this morning, so was NPO (without food) overnight. But when I got down there, my blood sugar was too high to do the scan. So it has been postponed until tomorrow, if they can get my sugar level down. They brought me back to my room, and I used the time to shower and knit.

I continued to be NPO all day, because they didn't want me eating before the cervical spinal puncture, either. Around 1:30 I went to the special procedures unit for the puncture. They did it using xray, so they could see exactly where the needle was going. They were able to get some spinal fluid, and will have the results in the next couple of days. All I know now is that they said there were a lot of lymph cells in the fluid, so it's looking more and more like what we expect--that the mantle cell is back. It was an interesting procedure, and not as scary (or painful) as I expected.

I had to lie flat for 2 hours after the procedure to keep from getting a bad headache, but had a radiation treatment directly after the puncture. They were able to keep me flat, though, but the radiation took forever today. My lower back and coccyx were killing me by the time they finished because of having to lie for so long on the hard metal table. They were having trouble seeing what they were looking for, and getting me lined up properly. After awhile I was having muscle spasms that made me move, which only made things harder. They finally did finish the treatment though. I have another one tomorrow.

By the time I could sit up, it was dinner time. I ordered dinner and ate every bite of it, I was so hungry!

I watched a bit of TV and knitted some more, then Kelly came over to see me for awhile. She just left a few minutes ago. She is such a sweetheart. I hate for her to be out driving so late, but I really enjoyed her visit.

If all goes well tomorrow, they will look at letting me go home in the afternoon. I am so ready!

Prayers continue to be much appreciated. Thank you!

Sweet Blessings

I talked to my youngest sister in Kansas yesterday. She and her husband were camping at a lake in northern Kansas. She said the people camping next to them were hosting several seminarians from someplace in Atchison, Kansas. She said the young men were having a ball, swimming, skiing, going out on the lake in the boat.

Johnnie talked to their hostess, who asked if they had been kept awake by the praying the night before. Johnnie had not heard the night prayers because she went to bed early. I wonder if she heard them last night. What a wonderful way to go to sleep!

She told the lady about me and asked her to ask the seminarians to pray for me. Later in the day Johnnie called me back and said not only did they pray for me, they celebrated Mass for me! It made me cry.

I am waiting for her to get back to me about exactly where they are from. I want to know more about them! Wasn't that a wonderful thing to happen?

On another "spiritual" note, the priest here at BAMC came by and gave me the anointing of the sick, which was very nice, too.

I'm glad someone is working on the spiritual aspect of things, because I don't seem to be able to focus much on that right now. All I can seem to say is "Thy will be done." That's why I appreciate all of your prayers so much.

PS: I had just posted this message when one of the hospital Catholic volunteers came by to ask if I wanted to receive Communion. What a sweet man he was! He actually got choked up during his prayers for me, and gave my shoulder a squeeze. We had a nice chat before he left. Sometimes people are so beautiful.

It's Back (Probably)

Well, we are finally getting some answers about my low back/coccyx pain and the numbness and tingling. The neurologist I saw on Wednesday put me back into the hospital. He saw something on the MRI I had a few weeks ago that everyone had missed, so he ordered another one. There's a cluster of cells at the bottom of my spine. They were unable to get enough fluid from my lower spine to find out exactly what the cells are, but of course the most likely case is that it is the mantle cell lymphoma returning. They're going to do another spinal tap at the top of my spine on Monday, using xray and ultrasound to see exactly where the needle is going. There is fluid there, and hopefully we'll be able to get a diagnosis. I'll also be getting a PET scan on Monday, or maybe tomorrow.

Meanwhile, they are looking everywhere else in my body for signs of it. So far I've had a CT scan, getting ready for radiation, a colonoscopy, a bone marrow biopsy, the lumbar puncture, an MRI that lasted an hour and a half! A scan of my head which will be used to see where they want to do the upper spinal puncture on Monday. So far they haven't found any more mantle cells, so I'm hoping it is just in an isolated spot that radiation can zap. I may have to do more chemo, too, though.

I had my first radiation treatment today. They decided to go ahead and start radiation because they didn't want me to continue losing my neural function. The treatment has already been delayed because of the mistake in reading the first MRI, so during those few weeks I lost more control in my back, legs, hips, feet and some control of my bladder and bowels. I'm praying that I will regain at least some all of that as we progress with the treatment.

I'll have 15 days of radiation. It was going to be 10 days, 300 units each time, but my radiation oncologist decided to do 250 units over 15 days instead. A little easier on my spine.

My dear Dr. B is out of town for two weeks, but the team here is keeping him up to date with my treatment.

There is the slight possibility that this could be something other than mantle cell lymphoma, or that the mass of cells growing on my spine could be something benign, but knowing how aggressive and sneaky mantle cell is, I didn't want to take the chance of not doing anything and losing more of the use of my legs. Whatever it is is not supposed to be there, it's growing fast and I just want it gone.

So once again I am begging for your prayers for me and my family as we deal with yet another health crisis in our lives. Thank you so much!

Ron got me a card for my computer so that I can use it here in the hospital. What a sweetie he is. He and Kelly were here tonight.

I had a really busy day, was out of my room until dinner time and was up all night last night doing the prep for the colonoscopy. So I'm miserable and ready for sleep. Once again, thank you for praying.

A Bit of Good News

August flower, the gladiolus.

I have the worlds. best. doctor. When he read my text that I couldn't see the neurologist until the 23rd, he called and told me that he wanted me seen much sooner, and he would take care of it. And he did. Now my appointment is Wednesday, the 10th. It's the same day as my physical therapy appointment, but one's in the morning, and one in the afternoon.

Things are pretty much the same around here. Reece has learned to swim; did I tell you that? He is so proud. He can swim from the deep end of the pool all the way to the steps in the shallow end. He looks so cute swimming! Papa has been working so patiently with him. Aubrey is swimming a little, too. Children are so remarkable.

Yesterday I watched most of the Falling Skies marathon. I've always been interested in "end of civilization as we know it" type stories like Stephen King's The Stand, and the movie Red Dawn.

Now that the year is half over, I am thinking about Christmas. I found an easy pattern for little girl sweaters that I think I'll try when I finish the little blanket I'm knitting now. It will be fun to make tiny sweaters for the little girls.

Have a great week!

Blech.

My doctor has referred me to a neurologist. Some of the chemo drugs cause peripheral neuropathy, and I think that's what has happened. I have tingling and numbness in my buttocks muscles and down my legs. I can't wiggle my toes, and it's hard to lift my legs.

The neuropathy sometimes goes away on its own, and sometimes never goes away. We're not sure if it has anything to do with the coccyx pain, or whether that's an entirely separate issue. My feeling is that it is somehow related, but who knows?

Walking is difficult, but if I sit around too much I get stiff and it's even harder to walk. I'm still using the walker.

The yoga tape and mat that Kelly got for me arrived, and I've used it once, but some of the things I can't do at all. So I'm just doing what I can as gently and carefully as possible.

The neurologist is supposed to call me for an appointment. I have an appointment for physical therapy on August 10. I'm so ready to have something done about this. I hate not being able to function normally. *edit* Someone from the neurology clinic just called and set the appointment for August 23. I was hoping to get in much sooner!

So I am in my room most of the time, reading, watching TV, surfing the net and knitting. The kids and Ron have been so sweet, bringing me food, doing my laundry, etc. Reece likes to be here with me, and the little girls come in from time to time. I hobble into their room some nights, to read them stories and put them to bed.

I finished all the Belgariad series, then started reading anything I could find lying around--mysteries, kids books (Heidi and The Ranger Boys). Anything to keep myself occupied.

Ron got me a coccyx cushion to sit on, and a shower chair, which makes showering so much more comfortable and easy. I feel like an invalid.

I had 9 months of "normalcy" after my cancer treatment and transplant, and I am so grateful for that. As uncomfortable as this new situation is, I'm thankful that the cancer has not come back and that I'm alive. I'm trying to remember to offer up the pain and discomfort for the salvation of souls, so I don't feel as if I'm suffering for no good reason.

Prayers appreciated!

Happy Birthday, Kelly!

Happy Birthday, my sweet daughter!

I hope that you are enjoying your day, even though I threw a monkey wrench into our plans.

May God continue to bless you always, and may each year of your life bring you more and more joy.

I love you with all my heart.

Mom

To Do List FAIL

I had 15 things on my "to do" list for today (Friday), and only got one of them accomplished. :o(

I'm still hobbling around, crippled by the coccyx pain and the fact that my butt and leg muscles aren't working right. I had planned to get a massage today, but that didn't work out.

Ron, Reece and I went to Walgreen's where I left the prescriptions Mom's doctor gave us on Friday so they could get them into their computer. That was the only thing on my list that got done. I looked for a coccyx cushion, but we had no luck finding one. The last pharmacy we stopped at said they would get some in Monday morning, so I'll get one then.

We went to Gran's and did the usual routine there, then Papa had promised Reece that we would get him some playdoh, so we did that. It was so hot that we decided to come home so that Papa and Reece could go swimming.

So I didn't get a massage, shop for Gran, find a coccyx cushion, shave my legs, do leg exercises, get some new sandals, get a pedicure, get vitamin d, yeast, flour, books or exercise capris. Cyrise put the towels and sheets in the washer for me, so that did get done, although I didn't do it. I forgot to take Teddy's flea medication to Gran's, so that didn't get done either.

Kelly got me a yoga DVD. It came in the mail today, but I haven't looked at it yet. She said she also ordered a yoga mat for me. She's so sweet. She is sure that gentle yoga stretches will help my back and other aches and pains. I hope she's right!

Ron massaged my low back and legs this evening, so I guess I did get a mini-massage. I spent most of the day in my room, where Reece joined me from time to time. We would watch videos or play with his playdoh. Cyrise brought my dinner up to me, and his as well, so we ate together.

I think I'll go shave my legs and try to do some leg exercises, so I can mark at least a couple more things off my list. :o)

PITB

Lotus flower.

The pain in my back got worse, so I called my doctor on Saturday. He wanted me to have an MRI, so I went to BAMC on Sunday and they admitted me. I was there all day Sunday and into the afternoon on Monday.

The MRI was normal--they didn't see anything that could be causing the pain, and believe that it's musculoskeletal. They released me with more pain pills. Physical therapy will call me to make an appointment to show me exercises I can do at home.

So Dr. B's original diagnosis of coccydynia is probably right on. There are several things that have happened that could have caused it--a fall, lifting too much, and just generally doing too much. They warned me to take it easy for the first year after the cancer treatment and transplant, but I went right back to life as usual as soon as I felt better.

I'm having to use a walker to get around. I feel like a little old granny (which I am). :o) But it beats staggering around and falling. Prayers are much appreciated! Thank you.