Major Fatigue

The Dr visit went okay; better than expected, actually. I knew that I would get a liter of fluids and was hoping for something to control the gas that came on after this round of chemo. I was anxious about the white blood count as I was feeling so lethargic. Dr started antibiotics for 5 days. The wbc was actually better than it was last week. So that’s a good sign. The red blood count has been down for several weeks and was down again this week; however it was slightly better than last week. My blood pressure was 82/61. Well, no wonder I have no energy…maybe the lack of bp is why I can’t make it from chair A to chair B without a nap.

The drug for gas worked. And the fluids always result in an immediate good feeling. We were able to stop by Rockfish for dinner on our way home. Even though we felt like we were getting away from the oncology clinic really late we were ahead of the dinner crowd at the restaurant. The fish soup was light and really good. The special was sea bass, my favorite fish, with sautéed baby spinach and mushroom risotto. I was so glad we stopped there for dinner.

Sometimes I sleep most of the night after getting fluids [except for the bathroom trips] but last night was a “no sleep” night. By 4 am I did get to sleep and slept 4 hours. Today has been another fatigue day. Fortunately the cleaning crew doesn’t care if I’m too tired to even open the door. They just clean around me where ever I’m crashed.  Domino and I napped an hour or so this afternoon while it was raining. Maybe tonight I’ll sleep.

“The fatigue is cumulative” so this is going to get worse before it gets better. O, well, I can read now so it isn’t as bad as it could be. And I’m really hoping that I can have a few days in the sewing room again. I have it set up to use seated…just roll the chair from the machine to iron to cutting table. Actually I could roll over to the bathroom door!!! So I just need to have enough energy to think and sew at the same time.

Christmas plus 1 day

I’ve never done so little to get ready for Christmas in my LIFE!! Evan did all the decorating and grocery shopping. Carolyn and Dylan helped get dinner ready and cleaned up. I did what little shopping I managed on Amazon.com and Macy.com. That worked well enough.

Natalie sent us a wonderful treat: Georgetown Cupcakes. This is a great assortment of beautifully decorated and extremely tasty cupcakes perfectly packaged for shipping long distances. I’ve seen these fancy cupcakes on the Food Network being delivered through East Coast cities. Now that we have tasted them we KNOW why they are all the rage!!We treated ourselves to cupcakes on Christmas eve and again on Christmas day. How fun! Natalie, thank you for sharing! http://www.georgetowncupcake.com/

Dylan and Carolyn came with wine and dessert for Christmas day. Carolyn discovered Sticky Toffee Pudding cakes when she was in London and found an outlet in Austin that makes these GREAT little cakes. http://stickytoffeepuddingcompany.com/  Here’s the web site should you like something a bit different for a treat. Now that was a great idea and more fun than what ever we had planned for dessert.

We had a brown Christmas…little/no wrapping paper. And some of the packages had presents for multiple people in the same package. Organization minus. It just happened. However, the presents were still appreciated!!! Isn’t that the point?

So to keep things super simple we decided to have steak and baked potatoes for dinner. And a couple bottles of wine. It was cold outside and Evan had to go in and out several times working the grill. Carolyn and Dylan set up the table and did all the extra work. I sat in the chair and helped them find things. Great steaks!! So after stuffing ourselves with food we went back to the presents and finished opening even more great things.

For dessert we had special coffee and Sticky Toffee Pudding Cakes!! WOW and WOW. These things are really good!! Thank you, Carolyn, for finding this treat and sharing.

I have another pre chemo Dr appointment this week. We need to check the red blood cell count again. And I’ll get a liter of fluid. Sometimes I feel good enough after getting the fluid that we can stop by a restaurant for a late lunch/early dinner on the way home. My friend Barbara S told me about a good Thai restaurant not far from the house and I’d like to try it soon. It is important that I avoid crowded places and germy places so when we go to a restaurant it is between meal times and with antibacterial lotion and that is about the best I can do for “out and about” activity. I think we have sampled ALL the delivery restaurants within range of the house!

missing a party and planning a party

 December 23, 2010   missing a party and planning a party

This night there is a wonderful party happening without me!!! And I’m not happy about that!!! Our friends Bill and LaVerne are celebrating Bill’s birthday with a family/friends Christmas party. Our two God Daughter’s and families will be there with the newest member of the family, Jordan age 2 months. Last year we drove to this party in the worst snow/ice storm I can remember. Katherine drove the Jeep with Evan, Elin, Mike and I helping her. Then this year we are having perfectly nice weather for the party and I just can’t manage the energy or the breath to go to the party. This is the pits.

So I have a plan working in my chemo brain. I’m going to have an END OF CHEMO party. Timing should be around the middle of March. I don’t know how the transition goes from chemo to radiation – what is the wait time between the end of chemo and before radiation can begin? I’ll have to find out. So if you are a local person reading this blog, pencil me on your calendar. As I understand the side effects of radiation is even more fatigue than I am having now. Well, I can hardly wait for that!! So we will party before radiation. Then maybe another party when this whole deal is done!!!

low RBC is the pits

December 22, 2010     low RBC is the pits

The good news is that the current protocols are managing the nausea much better this round. YEAH. I slept most of the night without much disturbance. My blood work looks good except for low red blood count which is anemia. The chemo causes generic fatigue and the low RBC only makes it worse. The good news is that my count isn’t so low that a transfusion is warranted. That means I just need to work through this time and survive. I don’t like feeling too tired to breathe or walk across the house.

Today I managed to put a white bean and pork casserole in the slow cooker in the morning and that was IT for the day. Domino [my executive Sleeper Helper] and I slept for 3 hours this afternoon. The casserole was quite good so I guess it was worth the effort.

We have been watching the snow storms in Europe with great interest since Katherine has been making her way from FRA to SFO today. She was in lines for 2.5 hrs trying to get through the business class line on UA. Hopefully they took good care of her on the flight. She sent a note on Facebook that she was at SFO so she will be at Elin and Mike’s for the next week then here on the 29^th. I know she wants to check on me again. Hopefully I’ll be in good form by the time she gets here.

Evan ran errands this am. He dropped off a box for Mother. I don’t dare go to the nursing home where germs abound and I don’t have much immunity. Then he mailed the last minute packages and stopped by the church to catch up on things. Then it was off to the grocery to pick up Christmas dinner steaks. Carolyn and Dylan will be here for dinner and will have to assist again as they have done since I’ve been in chemo. I’ll just observe and tell them where to find things.

Evan has the house decorated nicely with all his favorite things. We haven’t wrapped the UPS boxes. I guess a bow here and there would be nice, but we aren’t sure what is in the boxes or who the box should go to. Adding wrapping paper just wouldn’t make any more sense. Our extended family uses Amazon.com wishlists to let each other know what we really want. So when an Amazon box comes it usually contains items for all who live in this house or who will get presents at this house. However the label doesn’t always say which person gets which box. We will share the opening and pass the contents to the rightful party. It adds to the drama.

Chemo 3 today; now I wait for aftermath

Chemo 3 today; now I wait for aftermath

So far so good. The Chemo infusion when in the power port fairly well. The red drug hurt at the infusion site a little more than the last 2 times. The RN said that I didn’t taste it this time because I had my mouth frozen with ice chips so I was experiencing it more in my nose and ears. Purely weird. I could smell a metallic and drug combination; and the hairs in my middle ear tingled. The rest of the drugs went in nicely. Then came the drug study shot which may or may not be the real thing. That sucker hurt as she put it my upper arm. Next time I will get it in the belly like the Neulasta shot.

Hopefully most of you readers have never been to an oncology infusion suite so let me tell you about the Baylor Plano set up. I’m told by 2 of the RNs who work there that it has the best working environment for the nurses. They came to work at this facility because of the design of the suite and the positive TEAM environment. There are 4 RNs in the suite at all times. The dedicated Pharmacy is a few steps from the Nurses station. Medical records are online real time so there is little wasted time. My first stop is the hematology lab. Then it’s on to the dreaded weight and temperature check. It’s onward to the Infusion Suite, and sign in, and wait for lab results before my drugs can be pulled from the Pharmacy. Now it is time to select a recliner. The Suite is situated on the front corner of the facility, lovely views in two directions. I can watch the construction crew work on the upper floor additions to the Heart Hospital, or face the entrance to the General Hospital with all the Christmas decorations and people coming and going. There are 8 recliners in the front section, 4 backing to the front windows [view of hospital] and 4 facing the front window. The half wall separating the front unit from the center unit mitigates the “ward” feeling and houses many, many electrical outlets. The center section has 4 recliners facing the wall and 4 facing the front windows with a partial view of the Hospital. Each recliner has an infusion pump and enough room for a visitor to set nearby. I prefer to face the front windows and to be on the East end of the row. Either section will do.

There are 4 big TVs that one can request to use with head phones. The wi-fi capability is popular, especially with the young women and their guests. The small table and chairs over by the “kitchen” is popular with the older crowd of men waiting for partner’s chemo to finish. The refrigerator has juices and soda as well as storage for snacks a patient brings for those long sessions. And the ice machine has cubes and crushed ice which I need for the red drug. The coffee/tea bar is behind the recliners, over by the hospital rooms. Generally there are candy/cookies/snacks on the Nurses Station counter, compliments of the vendors or the staff or patients. Today there were 3 new patients, older men. The one young man in the Monday group has finished his 2^nd round of chemo and we hope is home playing with his little kids. I’m in the infusion suite every Monday, 1^st for chemo and for fluids on the 2^nd and 3^rd Monday. So I see both the every Monday chemo patients and the every 3 week chemo patients. Some have become regular visiting friends, sharing family stories and helping each other with minor assistance issues as well as coping ideas. One very shy young Black woman has begun to talk to me a little. She is having a very rough time.

In the back section of the suite there are 2 rooms with hospital beds. Once in a while some one just can’t cope with either the drugs or the situation and needs to be rolled into the quieter room to determine how to continue. The few cases I have seen have been older women and they did fine the next time they came for infusion. Of course when I say “older women” I mean 10 yrs older than me. That’s because I’m not “older” yet. I may be “older” by the time I get through Chemo 6.

So if one has to go to an infusion suite in North Texas, I can recommend TX Oncology at Baylor Plano. My experience so far has been VERY POSITIVE with all the staff and the claims are processing quickly and accurately on the first filing. I really appreciate that aspect.

Good night, friends. I’m headed off to add more drugs to my system and hopefully get some sleep.

Last Supper

Dec 19 2010    Last Supper

This is the day/night before chemo 3. I have enjoyed these last few days so much!!! It’s the little things…like sewing a little, not falling into the bed with fatigue, reading a book and remembering where I left off last time. It is so great to NOT FEEL BAD.

This morning a fellow volunteer from our days at the Community Ministries food bank came by the house. What fun to see Jan again! She brought me a really neat tea cup with infuser and Teavana tea. This will be great treat for after my afternoon nap. Jan has a new grand daughter she is privileged to baby sit so she is on leave from the food bank. Doesn’t that sound like fun?

Remember our friend Julie O who sent me such great cookies? Well, not only is she a great cook, she is a genius. Julie had asked what I wanted for this chemo round and I told her homemade puddings. When I’m really sick after chemo infusion I need old fashioned comfort foods, something that goes down easily and stays down. Believe me, pudding works. Now how do you think Julie got the puddings to me? Remember Julie spends the winters in Tucson and I live in North Dallas. Hint: the puddings arrived the same day they were made. Not just one pudding….no, no. There are three puddings, chocolate, vanilla, and butterscotch. Put your best guess in the comment section and I’ll announce the winner next week. [Nick, you can not win!! You have “insider information” and that’s not fair.]

Infusion is scheduled for noon tomorrow. Tonight I start anti nausea drugs to get ready for the big drugs. Then tomorrow morning there is another batch of pre-chemo anti nausea drugs. When I get to the infusion suite there will be a baggie of an anti nausea drug and an anti anxiety drug pumped in before the hard drugs. During the last chemo Mary Ann kept me chocked full of ice chips before infusion and all through the “push” infusion of the red drug plus about an hour after the red drug went in the power port. Then I kept ice in my mouth but not so much of it at a time. The ice constricts the blood vessels in the mouth and prevented those horrible mouth sores I got after the 1^st chemo infusion. Ice is certainly no fun on all my expensive dental work but it is far better than 2 weeks of mouth sores. When I get home tomorrow night there will be several different anti nausea drugs, every 4 hours per a pre set protocol for 24 hours. It would seem like I would get the required 80 ounces of water per day just swallowing all these pills!!!

I don’t expect to post on the blog tomorrow night, but I probably can let you know how I’m doing on Tuesday.

Another fun day in the sewing room!!

Dec 18 2010        

O I wish I could tell you what I made today!!! What a hoot!! Of course the first attempt didn’t satisfy me and needed re-working. I’m happy now!!  I celebrated with a super nap.

Old people need to keep their cell phones in their pocket at all times. How do I know this? Today Evan decided to bring down more decorations from the attic. He and Domino were searching for and found the right boxes. When Evan turned to head for the exit Domino did not. So guess who fell down. Not Domino. Evan fell flat. So why is the cell phone important? I was in the sewing room, listening to NPR, minding my own business and in my own world. I didn’t know they were “missing in action.” So when Evan did come in to tell me his troubles I was surprised. He wasn’t hurt, just needed an audience. Thank goodness he had his phone because if he needed me he would have been able to call me to tell me he was hurt. My normal routine when sewing is to sew until I just have to take a nap, go directly to the guest room and can be asleep in no time. I wouldn’t have come out to the main part of the house and wondered where he was until 5:00.  Poor guy!

Tomorrow is my last good day for a while. I want to sew a little bit more and maybe even go to a holiday open house if I’m up to it. Then Monday is chemo day! Bummer.

Ms Santa is in her workshop!!!

Dec 17 2010         Ms Santa is in her workshop!!!

O, what a fun day!! I spent most of the day in the sewing room creating unique gifts that I can’t talk about here because the kids read this blog. It doesn’t take much to make me happy…just a dedicated hobby room with tons of specialty toys and shelves overflowing with “resources” and “potential gifts” plus a few other things that I’ve forgotten why I purchased “that” but it must have been a good idea at the time.

Chemo brain has been a big concern for me. Chemo does kill brain cells and I don’t have any brain cells to spare. The first 2 rounds of chemo have been both physically and mentally difficult. I could not focus sufficiently to read books until this past week. What a relief to be able to read books again! Today I felt physically good enough to sew and have been able to design and execute projects without patterns. I’m declaring this to be a good sign. It is too soon to tell but I may have not lost too many cells SO FAR.

My friend Joan came by today with 4 wrapped packages for me. I LOVE WRAPPED PACKAGES!! Joan is out of town next week when I have chemo 3 and she wanted me to have presents to cheer me up if I’m having a bad day. How sweet is that!!! To make it even more fun, she says that 2 of the presents I may not know what the items are even after I open them!!! What has she found for me????? Stay tuned because the bad days are not very far off.

Week 3 has been GREAT!!!!

Dec 15 2010      Week 3 has been GREAT!!!!

This has been a really good week. I went in to the oncology clinic on Monday and got a liter of fluid infused. The Dr visit was encouraging. My blood values are good and Dr thinks I’m doing really well through the chemo. There were no changes in the meds which I’ve been taking to control the side effects.

On Tuesday I felt good enough to go out to lunch with Joan. We went to the Mint, an Asian Fusion restaurant. I was so hungry for Thai food and the Mint is one of my favorites. It was good to be out with Joan.

Today was another good day…..so good that I got to play in my sewing room!! Man, did that feel GOOD. I can’t tell you what I am making because I’m making Christmas presents. I was just glad to be back playing with my toys. And as I was rummaging around in the storage closet I found a few dozen projects that are fairly mindless. So maybe in Jan on week 3 of chemo 3 I can work on a few of these projects.

For the last 3 nights I have slept all night which is a wonderful event. Generally I’m awake several hours throughout the night and can’t drift back off to sleep. So I listen to NPR and/or the BBC. Believe me I know entirely too much about the UK’s financial situation and the political situations in Africa. I appreciate having the XM satellite radio. There are so many good options that I can find a station to fit my mood regardless of how crazy I am that night. We got the XM radio to use in the Jeep when we are driving both in the MidWest and between Dallas and Tucson …. There is NOTHING or worse for long stretches on both of those regions. I hadn’t anticipated needing a world of radio stations to get me through nights here in the city.

Help me celebrate a GREAT week 3.

Do bald people need shampoo?

Dec 12 2010    Do bald people need shampoo?

Let’s think about this logically. Several weeks ago when I had hair I used shampoo and a conditioner. Then the chemo hit the hair follicles and I lost bunches of hair so Barbara sheared my head down to about a ¼” buzz job. I continued to use shampoo and conditioner on my remaining hair when I showered. Today most of the hair stubble is gone…well, all the dark hairs are gone and white ones don’t amount to much. So as I’m standing in the shower, shampooing my bald nob, I wondered “Why?” The purpose of shampoo is to clean hair of oils and air pollution and whatever. I use soap or body wash to clean my skin. Now that my head is a “hair free zone” do I clean it with shampoo out of respect to the empty or dormant follicles? Or do I use body wash since there is no hair calling for the use of a shampoo? I just don’t know. What do you think?

This is another really good day. I’m feeling good and glad to be indoors as it is very cold outside. I enjoy watching football games when they are played outdoors, in bad weather and on real grass. This is a good day for such games. So I’m going to bundle up by the fireplace and zone out on mindless games.

Tomorrow is an oncology clinic day for Dr visit and to get fluids. Fluids always help.

To do Christmas decorations or not…….that is the question

Dec 11 2010        To do Christmas decorations or not…….that is the question

Obviously we are going to be home for Christmas this year. Well, that’s the plan. I’ll be happy to be at home and not at the hospital. So should we decorate or not? I’m not going to vote on that issue because I can’t participate in the work that’s involved in the set up or the dreadful re-packing for storage.

Over the years we’ve collected a wonderful assortment of decorations. Evan’s Mother was an expert crafter and created the most wonderful sequin Christmas balls. Even after sharing with the girls we still have dozens of her handiwork. From Mom and Elin we have many beautiful wall hangings that we love to display. When we travel we often bring home a Christmas ornament from the countries we visit. Several years ago Evan decided to collect crèches from different cultures and in a variety of mediums. At this point we have a few dozen of those with sizes from very tiny to covering a whole table top. Add to this many unique items I’ve found at estate sales and VOILA we have an attic full of Christmas decorations. It is like going to Christmas Warehouse and the Dollar Store and a Garage Sale up there.

Evan decided we needed to do at least some decorating so he has hauled the tree down and re-arranged the dining room to accommodate it. So now he can decide how much “stuff” he wants to haul up and down the stairway to the attic. We designed this house with a 2^nd floor over the garage with full stairway access. We just have too many Christmas decorations to navigate up and down those darn pull-down staircases. Over the next few days he will haul down more things.

My contribution to Christmas preparations was to print out the Christmas letter today. I hope I can master the printing of the envelopes as well but there is no guarantee. I had planned to play in the sewing room today but had a nap-attack and that was that. Here’s hoping that the next few days will be as good as the past few days. I ready to enjoy this 3^rd week after chemo and DREADING the chemo infusion of Dec 20.

Almost normal!!!!

Dec 10, 2010       

This was post chemo 2 day 11 and hopefully the beginning of a good week. I slept comfortably all night and Domino let us sleep in an extra hour this morning. Evan made our coffee which we drink while reading the paper. I don’t know if the paper is our excuse for setting around drinking coffee or if the coffee is our excuse for setting around reading the paper. Which ever it is, we have to have both things to get our day started. I felt good enough to actually cook breakfast with a little help. We made a version of the Local Diner’s “Pot ‘n’ Pan” breakfast with bacon, potatoes, and eggs. I did need to rest afterward but didn’t have to go to back to bed. We talked to Katherine via Skype for an hour. It takes a while to keep up with her busy life.

This afternoon I helped Evan up together a slow cooker casserole for dinner. That’s two cooking events in one day!!!!!!!! It felt so good!! And then I had a package to put together to send Dianna but first needed to do a little bit of sewing on one item. Then I packed a box for the UPS store drop off. It seemed like such a normal day!! I hadn’t realized how long it has been since I had a normal day!!

Carolyn has had a terrible cold for the past week and still isn’t well enough to come over. We talk regularly but just can’t risk sharing the germs. When Barbara was here yesterday we talked about this being the stage of chemo where infections become more likely and can strike so quickly there is barely time to get to the hospital. Chemo kills all resistance. On my long list of questions for the Dr on Monday is a section of questions about how to navigate THROUGH the ER waiting room and directly to the oncology unit in Baylor in the middle of the night or weekends. Surely there are key words and protocols that open doors and I want to know those words. The holidays are always busy times in ERs and I can’t be stuck in there sucking up somebody’s flu germs on top of whatever infection I might already have going. Chemo 3 on Dec 20 will be the worst so far as the drugs continue to accumulate in my system. We don’t know if the side effects will hit sooner or hit harder or both. With chemo 2 the nausea was more intense, the diarrhea lasted longer, and the fatigue was almost painful it was so deep. I definitely want to enjoy this coming week of respite to the maximum. It could be a while before I get another stretch of good days.

Tomorrow I want to play in the sewing room. I might even accomplish something substantial. Today I ate most of my accomplishments. That’s not all bad.

Where’s my TOTO???

Dec 08 2010         Where’s my TOTO???

We designed and built this house 10 years ago. We had to give up our McMansion in Baja Oklahoma because I could no longer navigate three flights of stairs to get to my toy room. I really loved that house; however it wasn’t hard to give up the commute in to work. In designing a new house I needed two things: to be close to work and on one floor with no steps. And after 20+ moves it was time to build a house we could live in as we got old. Well, who knew we would need all these “old age” features SO SOON!!!! THE HORRORS!!!

I did get so much of the design just right. I didn’t think I would be testing the design so soon; however I’m pleased to say that it is working. The divided bedrooms allow me to go to the guest room if I’m tossing and can’t sleep. All the showers have seats and bathrooms are easy access. The family room is central and has two dog exit doors so it is easy to service Domino’s needs. The open floor plan is great. Today I was able to so some cooking in the kitchen. Having the island counter lowered to my standing working height and my seated height worked very well. And the lower prep sink in the island was perfect (except for the faucet, that needs re-working). I was able to get a pot roast in the slow cooker and having the aroma in the house all day reminded me to eat.

There is one home design feature that I didn’t realize could be so important for old people and the chemo challenged. The bathroom floor plan designs are good now that both showers are accessible. I made sure we had the latest in water saving commodes. This is not enough. A generic commode is insufficient to meet the needs of the chemo challenged old person. I know this because I’ve spent more time in my bathrooms in this past six weeks than I had in the previous 10 years. What I need is a TOTO toilet with all the bells and whistles: heated seat, bidet feature with heated water, automatic closure, music component (with head phones), and padded seat.  And then I would add a few more upgrades that will be needed for the PERFECT commode room. Padded arm rests and foot rests would be nice. And just below the arm rests would be an in-the-wall magazine rack and just above the arm rests would be adjustable “mood” lighting. And there would be a “spittoon” which could be within easy reach. Within reach would be an automated TP dispenser which would hold a COSTCO bale of paper just ready to drop onto the spindle. That's a nice commode room!!!

That’s about it for now. If you want more information about toto toilets, here’s the website   http://www.totousa.com/

A day from HELL

Dec 07 2010      

Thank you one and all for the birthday wishes, cards and messages yesterday. It was great to hear from so many friends and family!!

I had a good birthday day and decided to get to bed at 10 pm. I generally listen to NPR and the BBC until I go to sleep. I was still tossing and turning at midnight and the sickest I’ve ever been by 1 am and continued SICK until 4 am. I don’t know if it was the BBQ or just chemo drug induced. That liter of fluid I got in the afternoon was long gone by morning so it was back to downing a liter of electrolyte water in short order. It took several doses of the $80 copay Zofram for nausea plus Lomotil to get back on to normal. I finally went back to bed and slept most of the morning. Evan brought me 8 ounces for protein drink every 4 hours and that was as much as I could tolerate until late in the afternoon. And that was that...over. 

I missed the cleaning crew working their magic. Maybe they made the bed right around me…..I don’t know. I really appreciate having them come and literally “straighten us out” and cleaning up our environment.

The big event in our day was the visit by the appliance repair man. I scheduled 3 repairs, the microwave that won’t heat, the oven lights that won’t come on, and the refrigerator that won’t share ice and water. What great luck we had in getting a wonderful technician who didn’t charge for fixing the lights and told me how to negotiate for a new door for the refrigerator. A new refrigerator door would cost $1000 plus installation. Apparently the defect is in the design that has wires that are too short and made of the wrong materials so the ice maker and water dispenser don’t get the message to open up and dispense. OK. I’ll work on that consumer project some day when I’m feeling better. Now for the microwave: it needed two parts and is now good as new. And best of all….it fits in its spot and matches the rest of the kitchen!!! The new models would require a new $150 trim package and don’t match the other appliances as well as this one does. OK, we won’t starve now.

I’m exhausted tonight just from not having a good night’s sleep and a bummer day. Let’s hope that I will get to sleep right away. I know entirely too much about the British financial crisis and the political problems in Africa. But I like listening to the BBC because of the different perspective in looking back across the Atlantic to the US. They make me think!!!

A GOOD DAY!!!!!!!!! YEAH!!!!!!!!!!!!

Dec 05 2010          A GOOD DAY!!!!!!!!!  YEAH!!!!!!!!!!!!

A break in the pain fog of life!!!! I got through yesterday without pain pills and used only Tylenol last night and slept all night. O, it is good to feel good. And I could actually read today. Up to this point I could only manage articles and magazines and newspapers. Today I even had enough attention span to read a book. That’s a first since chemo started. Now if I can hold on to this level of functioning I can make it going forward.

Tomorrow is a Dr visit day and an infusion of liquid. I usually feel real good after a liter of liquids. I hope that after I get home from the Dr visit I can make it down the hall to the sewing room. If I get the room set back up as a work room on Monday or Tuesday, maybe on Wednesday I can actually sew something!! That would feel so good!!

This is the end of the first week of chemo 2 and I’m doing much better headed into week 2. THERE IS HOPE!!!!!!!!!!!!!

Dec 04 2010              What a Downer Day!

It had to happen at some point…….MaryAnn had to go back home! How wonderful it has been to have her here to get me through the 2^nd round of chemo. She managed me quite well….and that is not an easy task, folks!! She kept me fed and watered and ice chipped. O, the ice chip idea worked so well in preventing the mouth sores!! Definitely we will be doing that trick on the next rounds. And keeping ahead of the drug side effects of the drugs was important.

The “wet noodle syndrome” is still in effect. The bone pain today could be just arthritis because it has settled in my right knee which looks like a bag of popcorn on the CT scan. Wonder if I can get cortisone shot while chemo is going on? Definitely I will be asking that question on Monday. I’m okay with just Tylenol today because the pain pills just zone me out too much.

Evan took Domino along to take MaryAnn to the airport and then they went to the Dog Park for some dog type fun. Domino is doing his imitation of a rug now.

I’m too bummed to write more. Maybe tomorrow will be better.

Bone Pain and Pain Pills Today

Dec 3 2010      Pain Pill Day

This day is a blurrrrrrrrr….pain pills are a necessity whether I like the dull brain syndrome that goes along with the moderate relief or not. I don’t know if the pain is all linked to the Neulasta or if some of it is from just plain old arthritis. My shins and thighs hurt enough to jam up my knees and the knees are the more painful than the leg bones. I needed the pain pills every 4 hours today so that resulted in tag-team naps. And that means I didn’t accomplish a thing.

MaryAnn made an apple pie and a pecan pie. Now she is making beef stroganoff for dinner. I’m so spoiled!!!

She leaves us tomorrow and I will be so sad to see her go. She makes sure I eat and drink the right stuff consistently which has made a big difference in getting through this round of chemo. The bone pain should go away in a day or two so I can get back to being just a wet noodle and not a brain dead wet noodle. She has enough goodies put into the freezer to get me through the next round.

That’s all I can write tonight. Maybe I’ll feel better tomorrow.

CHEMO2 Day 4 BONE PAIN DAY

                        Dec 2 2010                  Bone Pain Day

This is day 4 of post chemo 2 and it is going much better than the last round. The nausea is still under control, thank goodness. Fatigue is definitely NOT under control. So I’m back to barely navigating from chair A to bed B today. I did manage to get through the shower all by myself, but that was my only accomplishment. I needed pain pills today and that only makes things worse. Neulasta causes pain in the long bones so my thigh and shin bones ache like heck. Last time this bone pain only lasted a few days so let’s hope for a short duration this time.

Two really nice things happened today. Early this morning I got a package from my sister-in-law which had several nice fleece hats and a nice scarf. She had made some of the turban type hats and found the others at a cancer support shop. I will have fun decorating the hats with some of the old jewelry pins from my late mother-in-law’s collection. And this afternoon I got another package. This package was another gourmet treat from Julie O in Tucson. O, my, the best brownies in the world!!!! And the perfect finish to a drug day!!! Everything goes better with a brownie chaser!!! Julie O, you rock!!

MaryAnn made the best casserole for breakfast today. Wow, what a way to start the day!! Let me share the recipe with you as it is an easy “make ahead” brunch dish to have during the holidays.

 Pecan Sausage Casserole

1 8 oz package sausage (we used 16 oz.)

1 16 oz. loaf of raisin bread, cubed (we used cinnamon swirl)

6 eggs

1 1/2 cup milk

1 1/2 cup half and half

1 teaspoon vanilla

1/4 teaspoon nutmeg

1/4 teaspoon cinnamon

 Topping:

1 cup packed brown sugar

1 cup coarsely chopped pecans

1/2 cup soft butter

2 tablespoons maple syrup

Prepare 13 by 9 glass baking pan with Pam.  Cube raisin bread and put in baking dish.  Brown sausage, drain, mix with bread.  In large bowl beat eggs, milk, half and half, vanilla, nutmeg, cinnamon until blended.  Pour over bread and sausage.  Cover and refrigerate 8 hours or overnight.  Topping: Combine sugar, butter, syrup, and pecans and spoon over casserole.  Bake uncovered for 35-40 minutes until knife inserted in center comes clean.       8-10 servings

MaryAnn got the rest of the day off today. No kitchen duty and a day out with a friend from her home town; I hope they are having a great time. MaryAnn deserves some play time after taking care of me for so many days. She is going home on Saturday and we will certainly miss having her brighten our days with her great personality and treating us to great meals. There is no way I can re-pay her for her kindness and it is so wonderful to know she is okay with that. This friendship has lasted 48 years so far there will be opportunity to share more good times in the future.

CHEMO 2 day 3 NOT A BAD DAY

Dec 01 2010

This is definitely a “wet noodle” day and that is about all it is, thank goodness. I am not having nausea or other issues and no mouth sores at this point. I didn’t sleep well after 2:30 last night and needed two industrial strength naps today. All of a sudden a wall will come up and hit me in the face and I can barely make it to the bed. Domino knows to let me land first or he could be in trouble!!

A big difference in this round and Chemo1 is learning to manage the side effects with even more drugs and having MaryAnn here to cook and share tea and drinks with me. Of course the wonderful cookies she makes to go with the tea certainly help!! My kitchen is getting a work out and I get the benefit of the work and the friendship. Also, one of MaryAnn’s friends suggested eating ice chips 10 min before and all through the red drug infusion. And we did this and it has helped so far. Barbara added electrolyte water to my routine and that helps. And I got a liter of fluid on day 2. So far, so good.

The hot flashes continue to be a minor annoyance in the day and disturbing at night. I discovered today that when a flash hits I can just take off my skull cap and let the steam rise!!! Wonder if this will work at night? Too bad I can’t direct the heat to my feet!

The only thing I accomplished today was to schedule the repair service for the microwave which wants to go to the great recycle in the sky. To prevent the oven and refrigerator from jumping on that bandwagon I scheduled some deferred maintenance for both of them as well. The refrigerator makes ice cubes but won’t share them via the dispenser and now has decided to keep the ice water to herself as well. That is just not nice. And the oven lights don’t turn on because the bulbs are burned out. Changing the bulbs wouldn’t be a problem if the screws would turn to release the bulb covers. To do this job one needs a giant power drill with a tiny specialty screw driver blade. WHO THINKS THESE THINGS UP any way?? So in order to talk to the repair service scheduling person one has to have both the MODEL NUMBER and the SERIAL NUMBER which are conveniently located WHERE???? The numbers for the oven are located so one must stand on their head inside the oven to read the umpteen digits. On the refrigerator the numbers are located so high up that one can’t read them through the bifocal lenses and must get the ladder to see the numbers clearly. O, and I want the service person to replace the water filter which is conveniently located ON THE FLOOR where old people can easily reach in to change it after creaking down to lay flat on the floor and then try to see where to put it without the benefit of the bifocal lenses!!! IT IS A BLOOMING CONSPIRACY!!! At least it will be one service call price for all three appliances and the company takes credit cards, cash and checks. It may take all three to pay this off!!!

I’m tired of being tired and disappointed that I’m not in the sewing room having fun making Christmas presents. Sewing is not work for me; it is therapy and I need therapy. I have some wonderful fabric in there just waiting for me to make nice things. Even if I set up the workspace to be used setting down I don’t have the energy to stay upright long enough to accomplish anything at this point. Hopefully week 3 will give me a chance to make a few things, just enough to “take the edge off” and at least make me feel good.