Garage Sailing

This morning while it was still nice (though somewhat muggy all the same,) Kirk and I went Garage “Sailing” in the area. We found about three garage/yard sales, but only two were worth a visit. At one, I made a huge find: four Fire King bowls with handles. Fire King is collectible, though these particular bowls were less so because they were white. But I like them and don’t plan to sell them. And we need them. The bowls that came with the apartment are kind of grim–too large to balance on the hand and too shallow to keep from spilling.

I also found a crocheted cap, which I washed carefully. We’ll have to see how it works out.

We visited, as well, a bead shop different from the one in Rice Village. I decided to buy enough beads to make a necklace to give myself an art project.

Right now, we’re on our way out the door to take a look at a campground that some patients at MDA have raved about. It is actually in the city, not far from here. We’re going to check it out.

A Beautiful Day

There was something really beautiful about today. I was so down on Wednesday. Even called to ask a friend in this area to pray with me over the phone. My counts were all so good, but I was feeling terrible. The only word that I can think of to describe the feeling I had Wednesday is “claustrophobic.”

But today I was released in ways too profound to justify in this entry. Let’s just say it was really quite beautiful. I had energy. Jacob and I played the card game Uno. I read a mystery book from a series that is about as light and uncomplicated as can be. I took Jacob down to the pool, so he could do his training for the Grand Canyon. Then I still had enough energy to get some Mexican food at a local restaurant that is not usually very busy. Even the weather here in Houston seemed to cooperate…it was not nearly as muggy this afternoon or evening as it has been. It rumbled and thundered like it was going to rain, but never did. Of course, my Magnesium was high enough on Wednesday to warrant only a small home infusion today.

I also had a nice talk with a possible caregiver, who would be able to stay with me nights Sundays through Thursdays. She is a student of MD Anderson working toward her Ph.D. She sounded very nice and I know her through relatives, so she may be a good alternative to someone being here 24/7. But I am still leaving things open. I was sort hoping for someone who could get me to my appointments, even stay with me at them, if possible. But, as I said, I’m open to possibilities.

Correction and Notice

In my last entry, I said that I would start being alone Sunday night through Thursday afternoons next week–the week of July 15th. That was incorrect. It actually begins the week of July 22nd. What was I thinking? Jacob will not go back to Dallas until July 22nd. That is so he can get his backpacking equipment packed and ready for his big trip with his dad to the Grand Canyon, which I believe starts July 29th. They both are hiking together down to Phantom Ranch for a night, then taking two nights to hike out. On the way, Jacob’s dad has planned some visits with Vernon’s sister and my mom/Lisa, Randy and Sam in New Mexico.

However, when I mentioned to Dr. Popat that I would be without a caregiver Sundays through Thursdays, he said it was really not an acceptable arrangement. It’s important, he said, to have someone with you, who can help during those sudden downturns in health. I have already experienced that a couple of times and was lucky enough to have Kirk or Jacob with me, so I got what Dr. Popat was saying.

Thankfully, my dad has offered to pay for a caregiver. I am so honored by this…and grateful. So, in light of this, I’ve started putting the word out to friends and family who have connections with persons who are able to do this in the Houston or surrounding areas.

What I’m looking for is someone who can live with me Sunday nights through Thursday mornings or afternoons starting July 22nd or 29th, 2007 and probably continuing until the end of August–about 4-5 weeks. This person would not need to stay weekends, but if they needed to they certainly could. The apartment I’m living in is very nice and has an 2nd bedroom with a bathroom to its own. What I need is a nurturing companion type of person who can do some light cleaning and cooking around the apartment. On days when I go to M D Anderson, this person would need to drive me there and stay with me in my room, perhaps running light errands in the clinic, but mostly just staying with me for the hours I am receiving treatment. Pay would be commiserate with experience, but this person does not need to have nursing capabilities.

If you are connected to a church in the Houston area, even as far as Austin, and know someone who is interested, please contact me by e-mail (swilder@ccccd.edu) or phone (if you know it) and let me know. Or interested persons may inquire themselves. Someone with a upbeat, nurturing personality would be best. References may be necessary for those inquiring with connections to old friends or family.

Now, I should also tell you that today was a really good day in terms of my counts. All of them were UP today. My white blood was actually normal, and red blood was not far behind. The Magnesium was high enough for me to take a smaller infusion home with me for tomorrow. Praise God! Kirk comes tomorrow and I can hardly wait. I feel as if I haven’t seen him in forever.

Gone home

You can tell when someone goes home from a situation like this, no more updates! I’ve been wanting to write an update, but honestly, there’s a lot of living out there to do. A 14 mile bicycle ride on a wonderful wooded trail, a 1000′ gain hike in the Columbia River Gorge, walks to the Saturday farmers market downtown, and being with family and friends.As I told the doctor today, I’m still

Cat Scan Wednesday

It appears as if next week will be the beginning of my “home alone” experience in this phase of my treatment. Kirk can come Thursday, but he will leave and take Jacob with him on Sunday. That means I’ll be here taking care of things on my own Mondays through Thursdays for a while.

This Wednesday I am having a CAT Scan to see if I’ve got something going on with my sinuses that may be triggering my headaches. I am hoping this will help my team to treat the headaches as sinus-itus rather than migraines. I was able to keep headaches away today for the most part. But they are always literally “knocking at the door” (ie. throbbing) and waiting for a chance to become a full blown terrible headache.

Aside from this and feeling a little sleepy, I had a pretty good day. Most days, in fact, up to this point have been mostly like the one I had today. Just a little tired, just a little headache-y. Mainly, I think from the infusion of Magnesium, which has that effect on me, I think.

I am making progress, though, from my perspective, it seems slow. My team seems to think I’m doing marvelously. And making progress rather quickly. All I know is that I am trusting God to get through this next part.

Please continue to pray for Kirk and that my counts go up to where they need to be and stay there. Also that the headaches be cured with information from the CAT scan.

Day 33: Missing Kirk Again

The two units of blood I received Friday must have worked because today I do feel more like myself. I’m on the last hour of my home infusion of Magnesium…usually the hardest part. Toward the last hour of the infusion the Magnesium makes me feel hot, almost as if I have a sunburn and can give me a headache and/or make me nauseated. I’m thinking that if I can distract myself by writing, perhaps my “end” reactions won’t be so noticeable.

Mom just called from Albuquerque. She had a lay over in El Paso, but the flight was uneventful. Once again, she was so helpful. There’s lots of food in the frig to heat up for the coming days before Kirk will be here because of her. I’m so glad she was able to make it work in her schedule to be here again for another week. I’m not sure how I would have made it through the “endless” Friday, if it hadn’t been for her. She managed to do all the wash, as well. But her greatest contribution was her perspective, which made me feel supported and loved through the day in and day out of my treatment. Thank you, mom. I love you so much.

Kirk reports now that the cat has chewed out all of his stitches, despite doctor’s orders that he not do this. Amazingly, it appears he is unscathed by his behavior. The surgical wound has healed, though Kirk is going to ask the vet it there’s anything that he should watch for. That cat just will not be held down by anything.

These days I, too, find myself chewing out my own “stitches,” but in the emotional world…not the physical. I am at day 33. The earliest anyone has gone home from this experience is day 84. That leaves 51 days…about one month and a half…before I can hope to go home. Thank God there are little victories along the way. For example, when I was suddenly reduced from going into the outpatient clinic 7 days a week to only 3 days a week. My next step will be reduction to 2 days a week…probably Tuesdays and Fridays (according to my APN.) But I will be happiest when I can start reducing the amount of Cyclosporine I’m taking. August 10th will be another major step because I’ll have a bone marrow biopsy that will indicate what is going on with the cancer. Of course, I know they’ll find nothing. I’m just looking forward to the proof of my healing.

I’m having I must admit some issues with loneliness. I had mom here and that helped. I have Jacob here and that is wonderful. But I miss Kirk, who I get to see so rarely it is really starting to bother me. Talking to him on the phone sometimes actually just makes it worse. I don’t know how to explain this. Mom sends lots of cards. People do call. I wish it were possible to exchange the presence of my loving husband for the presence of others, but it just can’t be done. I miss him terribly and find myself resenting anyone and anything that prevents him from being here. It is almost unbearable to go through this last treatment for the cancer without him. The few days he was here were awesome, though three days can hardly make up for the ten he had to be gone.

Tonight Jacob and I will make a trek to a drive-in movie theater, so we can see a movie on the big screen. Of course, it wouldn’t be prudent for me to go see a movie in a movie theater right now. I’m being very careful about protecting myself from catching anything, as my doctors recommend. I hope I have enough energy to go through with it. The movie starts at 9PM and probably won’t be over until around 11PM. Then I’ll have to drive back to the apartment. I feel as if it will be okay, but I’ll just have to take it as it comes. If I’m not ready to leave at 8PM, then we’ll wait until Kirk is here to give this a try.

Kirk has noticed that I have a few more typos in my blog lately. He’s worried that this is a sign that things are “not as they should be” with me. I want everyone to know…it’s true: things aren’t “as they should be,” but only because I miss Kirk so much. I often read over the blog and notice these typos. I just don’t have any motivation to go back and change them. Motivation for me has often come from Kirk. I mean, I’m able to motivate myself…and have for years…but now that I’m weakened physically as well…my motivation has slipped a bit. Especially without my sweetheart here.

I love Kirk so much.

Two More Units Friday

Since I felt well enough to travel a little bit, we all took a trip to Tomball to see my aunt Daphne today. She’s living in an assisted living complex there, but may have to move because of a recent incident. She’s taking hydrocodone for pain, and I blame it entirely for any erratic behaviors she may be exhibiting. Apparently she’s been knocking on neighbors doors late at night when the train goes by or when she doesn’t get an immediate response from her caregiver who comes when she pulls a cord.

Hydrocodone is one of those medications that I believe can make you rather paranoid, if you take it long enough. And I think she’s been taking it long enough. I had much better luck with Ultram, but it takes more effort on the doctor’s part to prescribe it. Something about triplicate forms.

Friday was one crazy long day at MD Anderson. We arrived at our usual time at the Diagnostic area to give a blood sample. Once again the phlebotomist didn’t know that I was “holding” my cyclosporine until after the blood draw. I decided to put my foot down and ask her to call my team to set things on the right schedule. I had this feeling that my cyclosporine levels hadn’t been check for almost two weeks.

Next, we were on our way to the 10th floor where we proceeded to wait almost an hour and a half for a room. At 12:30PM, I joked about starting a riot, but didn’t get a lot of energy for or against. People were just too sick to fight back. Finally I got a room. The three of us–mom, me and Jacob–snuggled into the room. By this time, I’d started to get a migraine again. Very discouraging. I prayed. Turned out the lights. Thought of what pills I could take. But nothing was working.

When the nurse who sets up my Magnesium drip arrived, I poured out my woes to her. Fortunately, this brought my team. I now have a new Pharm D named Jamie and Lynn, my APN, was back from vacation. I explained what was going on with the migraines. Lynn had already ordered two units of blood for the day, since my hemogoblin was low again. Lynn suggested that lack of oxygen from low blood may be the reason for the migraines of late. That made sense to me, but she also asked if it might be sinusitus. I agreed it might be related, so they’re going to do a CT scan on Monday to check for that. Frankly, I’m glad. If I have a sinus infection, it would certainly explain some of my symptoms.

So instead of just taking the usual migraine meds for the headache that came up today after my visit to Aunt Daphne, I also took a sinus med. It actually helped and gave me some relief. So Lynn may be right. We’ll see on Monday.

Mom leaves tomorrow for Santa Fe and it’ll be just Jacob and me again. I’m surely going to miss her. Kirk is home nursing the cat back to health. He’s eating wet food now and appears to have ripped out all of his stitches (which he wasn’t supposed to do…by the way.)

Meanwhile, I am actually started to feel like my old self again. It’s great. I can watch stuff on television without crying and food tastes good to me. I still don’t eat as much as I did, but I wonder if I ever will. Food just isn’t that important to me any more.

I’m hoping the infusion of extra red blood has done the trick and pray that I won’t need more again on Friday again. I would really like to get off this Cyclosporine. Slowly. The way they talk about doing it when it’s time. Whatever the case, I’m feeling stronger these days. Maybe I’m sleeping more. Anyway, I just thank God that I’m heading in the right direction. My hair is growing and people say I look healthy. That makes me feel so good.

Thanks to all of you sending cards and letters. It means a lot. It is very difficult to go through something like this and your cards and letters let me know you care. (The address is on the right had side in the messages section of the blog.) Call if you like, as well. My cell has the number for the apartment land line on it. If I don’t answer my cell, please use the land line. There’s always some good reason I can’t answer it. Rarely, I’m just too tired. But most of the time the reception on the cell is just not good or I’m running out of minutes on my cell.

I continue to ask and desire for you all to pray. With no signs of GVHD, I know God’s intervention due to your prayers is a big part of the reason. August is still wide open as to a caregiver. Maybe it’s just God’s will for me to be here alone Monay through Thursday. Right now, I’m pretty sure it would not be a good thing. But in August…who’s to say how I’ll feel?

A Cat and a Spool of Thread

Kirk arrived in Houston as planned despite our cat who managed to get himself into a (literal) bind by swallowing almost half a spool of thread. Thankfully, Kirk got him to the vet in time. The cat did end up having to be knocked out while the vet tried to carefully pull out the thread. Unfortunately, he had swallowed just too much, so he had to have the ball of string surgically removed. It had even gone into his intestine a little. But he is recovering at the vet’s even as I speak and Kirk cut his visit short to go an tend to him. Good for the cat, but not so good for me…since I only had a few days with Kirk before he has to turn around and go back to Dallas. Kirk promised to return as soon as possible, so I’m okay.

My counts on the 4th of July were very good, though the Magnesium could still be higher. My white blood was actually in the normal range! Everyone is pleased with my progress (by God’s grace.) I have finally started to feel as if I have more energy. I even got an unexpected migraine, which usually means other things are returning to normal in my body. Though I hated having the migraine, it was a nice sign that my cycle may be returning to me. They gave me a bunch of meds in my IV to help me with it on Wednesday…so many meds that I had to be wheeled out to the car by Kirk. I think I fell asleep in the chair in the elevator. Of course, even those meds did not knock out the migraine until I had really slept for a bit at home. Then, like in the old days, my migraine returned and I was able to catch it soon enough and bring it under control.

Today, I actually had enough energy to go shopping with mom and Kirk! Then we ate out at a Mexican food restaurant with few patrons (for some reason…even though it’s very good.) Thank you, Jesus. I feel almost normal again. It doesn’t hurt to walk. My muscles aren’t sore. I am eating well. Not like I used to eat, but my appetite is really good. I also sleep well most nights.

My former sister-in-law, Lynn, called out of the blue. She is a caregiver and may know someone in this area who could be paid to help me out in the month of August…which is still a blank slate in terms of having someone with me during the days of the week through Thursday. It was so great talking to her. She is one of the most angelic women I’ve ever known in all my life. She’s amazing! She lived in this area for some time and promised to contact her church to see if they know of someone I could pay for care.

Insurance at Kirk’s work has now switched to United Health Care, but it looks as if the coverage for lodging during a transplant is the same as it was under Aetna. It took FOREVER for me to get to the person who knew this information, but I finally got it figured out. There was a problem with one of the antibiotics being covered because it needed “pre-approval,” but somehow it was worked out.

Thanks to all of you who’ve been praying me to wellness. I ask God daily to bless you in whatever way you specifically need blessing. It is a very good thing you have done for me. I thank you from the bottom of my heart.

Overcast Day

It looks so overcast outside that I wonder if Houston has any chance of being able to see fireworks on the 4th in two days. It’s been like this for a day or two, so there’s always that chance it’ll burn off.

I heard from my former sister-in-law, Lynn, last night. She called because she’d just heard about my illness. She is actually a caregiver right now for an older lady. She has friends at a church in the Houston area, and she said she’d see if there was anyone available in August that we could pay to live with me.

I’m not sure I’ll need it, but I think it would be nice to have a companion during that period of time. Lynn said she’d get back to me about it next week.

The only thing that hurts these days is my feet. The more I walk around the less they hurt, so I’m going to make every effort to do so today. I guess all this sleeping and sitting around (due to lack of energy) has had an effect on my feet. They don’t really hurt they just ache and tingle a little now and then.

Tomorrow, it’s back to the outpatient clinic. I’m curious to know how the hemoglobin will read since I had a unit of blood on Friday. I think I am only feeling the good effects of that today. They said it would give me a boost of energy.

Kirk says the kitty is coming back to normal. I think he’s going to be fine. He’s hiring a little girl down the street to come and take care of our animals while he’s down here in Houston. I sure do look forward to seeing him this Wednesday. Sometimes I think it is missing him that makes me feel worse than I actually am physically.

DAY NINETEEN

The transition from hospital life back to civilian life, post-chemo, has had its challenges and obstacles. I am doing well, as a matter of fact, tomorrow I will be seeing Dr. Shea and hopefully checking out of the hotel and heading home. Still low energy level, nausea under control, require lots of rest but feeling good……Gary