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.

CHEMO2 Days 1 and 2

Nov 30 2010   

Yesterday was my second round of chemo and the infusion went in fairly easily. Thankfully there were no allergic reactions. Dr added a few more anti nausea meds and that seems to be helping. Carolyn came over to join us for dinner and we had a lasagna that MaryAnn had made and nice veggies and salad. Lovely.

I slept all night and got up feeling fairly well.  

This morning I felt good enough to go to the House Café for a nice breakfast. That was fun. The cleaning crew worked their magic while we out so it was a great morning. I hit a drug wall about noon and slept hard until time to go to the clinic for the expensive Neulasta shot and a liter of fluid. And Dr. scheduled a 2^nd liter of fluid for next Monday with a prn orders fluid if I need to go for even more. Water just seems to run through me which is not a bad thing overall. It keeps me walking day and night, plus keeps the bladder flushed so the chemo drugs don’t eat away at the bladder lining. Adding the electrolyte water makes me feel better on a day to day basis so we’ll just have to see how much extra fluid I need for this cycle. Grade 3 chemo drugs are quite strong so these fluids are critical.

Having NO HAIR makes for a COLD HEAD. I need a skull cap of some sort in the house and a hat outside. Maybe wearing a cap for a while will make me more adaptive to using the wig. Today at the clinic the woman in the chair next to me had the long red/blonde streaked wig that I tried on and rejected. On her it was perfect!!! So maybe when I get to feeling better I will find a spunky wig that I can carry off.

On Chemo1 the Hell began on Day 3 so we will try to avoid going into the dumpster on this round by adding the electrolyte water, stronger anti nausea drugs, more GI preventative drugs and a medication for mouth sores. I’ve been using ice chips to hopefully avoid some of the mouth sores.

We are enjoying having MaryAnn here!!! She takes great care of me and Evan can get a multitude of errands run and gas in the cars. Domino is over his pouting because Pepper went home with Harry. I told him he would just have to get over her because he is NOT getting a sister for Christmas!!

NO HAIR DAY

Nov 28 2010

“We” did it……..the “royal” we [my sister and I] shaved my head today. MaryAnn documented the event with photos. It was a “have to” case, believe me. As I was leaving the recliner to head for the shower I noticed that my chair looked like a hairy dog. I wiped it with the lint brush from every direction. Yuck! Domino doesn’t shed. Pepper is a black lab so those curly brown and grey hairs can’t be blamed on her. I guessed I was the donor. I went in to the shower where clumps of hair clung to my hands and I tried to transfer the mess to the trash rather than the drain. YUCK! I dried off on a white towel and found it was full of hairs! I checked my pillow and it was full of hairs.

“That’s it, Hair! I’m telling my sister on you! If you can’t stay on my head, it is off with you!”  And that’s what I did. I called my sister for an emergency barber visit. She trimmed it from 1” to ½ “ and then down to 1/8” and then we quit. The stubble might hold the hats and wig on better. If it bothers me I can always use husband’s razor to shave it all off. Who knows, even the stubs might fall out at some point. If so, it won’t leave as much of a mess as the longer hair did.

“So what else is new?” you ask so kindly. This was another GOOD DAY with little nausea or grinding fatigue. Tomorrow is Chemo2 which starts at 11:00. It is scheduled to last 3 or 4 hours. For Chemo1 they infused each drug slowly to check for allergic reactions and I didn’t have any problems with any of the 3 drugs. Chemo2 may go faster. MaryAnn’s friend had good luck avoiding the horrible mouth sores by eating ice chips before and during the red drug so we are going to try that this round. I generally don’t like ice on/near my teeth but will suffer along with ice chips during infusion to avoid the possibility of days and nights of mouth sores agony.

Katherine left me some Scrubs DVDs to watch during drug infusion. This show is short and mindless. And I have the iPod with music and downloads. I might be able to focus on a book this round, but if I can’t focus very long I will have a magazine or two to read. There is wifi in the infusion clinic so I could participate in Cyber Monday Shopping and help the US economy. O, who knows how I will feel. I’ll take my blanket and may just sleep if I can.

MaryAnn made lasagna today and it will be our dinner tomorrow night and half will go in the freezer for another feast later. I love having a guest chef in my kitchen.

This was an expensive day for our household. The microwave died a sudden death. It was 10 years old. Truly, microwaves aren’t that expensive even though the new model will have to have its own new trim kit and installer. No, that isn’t the real expense. Here is the REAL expense: all of the appliances are the same age and when one appliance sees another appliance go to that great recycle in the sky it too wants on that bandwagon. Then another appliance wants to go and pretty soon they have ALL GONE TO RECYCLE. Now that IS expensive. Bummer.

Wig Day

Nov 27 2010

“Where have all the hairs gone; long time passing.  Where have the hairs gone; long time ago…..When will they ever learn!!!!!” This is crudely paraphrased from an old Peter, Paul and Mary song.to make the point that more hairs have gone far, far away. Yesterday I had no bald patches; today is a different story. Today there is much scalp showing and the hair isn’t evenly thin. When I brushed my teeth with the electric toothbrush this morning I shook loose a bunch of hairs. You would have thought I had used a power drill to run the toothbrush!!

After lunch MaryAnn and I went to the wig boutique. I liked their hats and scarves better than the wigs; but I went to check out the wigs so stayed focused on wigs. I can’t sew or make a wig or even decorate a wig. I needed help. I went in with the idea of getting two wigs, one close to my usual color and style and one more daring.

So the first wig I tried was pretty close to my hair style before chemo started and before Barbara gave me a buzz cut. Maybe the wig is just a little greyer, or maybe I’m in denial as to how grey I’ve gotten lately. Wig One was quite nice. Then we tried one shade lighter and one shade darker but settled on the first one as “close enough” for a short term wig.  

Then we tried for a longer, more red and blonde style wig. That was definitely NOT IT. And I realized that I was just not into getting in touch with my inner punk or inner Dolly. Maybe I’m just not ready to have any kind of fun with this chemo/cancer drill. So I bought Wig One.

I’m not sure whether my issue with wigs is the stitching or the stiffness of the wigs or the idea that there is “something” on my head. I wore the wig out of the boutique and over to Marshall’s to shop. I was never able to “forget” that there was something on my head. I did get past the feeling of the wig enough to buy some nice pajamas and a velvet leisure jacket and pants to wear to the oncology clinic. It could be that my wardrobe for the next 2 weeks will be pajamas and leisure suits paired with house shoes for an even more casual touch. What does one wear with leisure pants and house shoes….the wig or the cap? And who will care???

All in all, this was a good day. MaryAnn drove us to the Bernina store so I could pick up some thread I had ordered during the last sale. Then we went to a Mexican restaurant for lunch before going to the wig boutique and Marshall’s. That was enough to wear me out. I have one more good day opportunity before Chemo2 begins on Monday. Wonder what we will think up to do to entertain ourselves tomorrow?????

Tonight we feasted on leftovers from Thanksgiving…turkey, dressing, potatoes, and GRAVY. O, I love gravy. And I make the world’s worst gravy. This is a true story that my girls love to tell: I have made gravy so bad that the dog would not eat it!!!! Ask me for a soufflé, 10 course Chinese dinner, anything but gravy!! We didn’t have any pie tonight. Both pies are long gone. I love having a guest chef in my kitchen!!! Thank you, MaryAnn.

Bad Hair

Nov 26 2010

She said, “Bad hair!! Bad, bad hair!! Jump your silly selves back onto my head!!” It was all for naught.

Today was the beginning of the end of “hair on my head” as I have known it. I was shampooing as usual and in rinsing my hands I saw many, many hairs on my hands. Now understand that since at least half of my hairs are white and all I can see in the shampoo is the dark hairs, there could be even more hairs “missing in action.” It is still too soon to tell by looking at my head because both my grandmothers willed me their super sparse hair genes. Going from super sparse to extra super sparse follicles might take some detective work and quite frankly I don’t care that much.

Barbara is encouraging me to go get two [2] wigs and I not sure I want one [1] wig. She thinks that I should get one conventional wig and one non-conventional wig that would “channel your inner punk.” I protested that I might not have an inner punk so she comes back with “so channel your inner Dolly Parton.”  Oops. Well, I can do that!!!

I wasn’t sure I even wanted to get a wig. The places I have been going this last six weeks certainly wouldn’t require a wig. When I’m at the oncology clinic and Dr Office most of the patients are in various stages of baldness. The first two weeks after a chemo infusion I’m too sick or fatigued to go anywhere. The third week I might shuffle out a time or two. However as I get further along in the chemo process I’ll have even less resistance to germs and bacteria and such. Even when I feel like going out and about I’ll have to be extremely careful. The alternative would be staying home for 3 months!! I can’t even imagine being just in Texas for 3 months!! I have some cute hats and caps for warmth and casual wear, but maybe I do need a head cover for more upscale outings.

So tomorrow MaryAnn and I will go wig shopping. I don’t know if I will channel my inner Dolly Parton. MaryAnn has a great sense of humor and when we are together there is no telling what might happen. Stay tuned to see if we get a punk wig or a Dolly wig or just some old lady wig that looks like the hair I’ve been wearing for years.

Chemo break for Thanksgiving.

Nov 23 2010           

And another GOOD DAY, o my, this is living!!! I remember having a real life. It was a little like today only faster paced. So it is true that chemo week 1 is HELL ON WHEELS; chemo week 2 is HELL; and chemo week 3 is almost normal. I still have fatigue but am not hurting or gagging or worse. I even went to the grocery store today and made it all the way around the outer ring. We did some last minute shopping before Thanksgiving cooking begins sometime tomorrow.

Let’s talk TURKEY DAY for all our European friends. Thanksgiving is an American excuse for pure gluttony. Friends and family gather around noon and eat until night. When I was a child every thing was start from scratch cooking and fresh never frozen meat, all pumped out of Grandma farm house kitchen. For the 20 or so immediate family we always had a turkey with herbed bread stuffing, a ham,  mashed potatoes, sweet potatoes [yams] covered with marshmallows, parsnips, hand made fluffy noodles, corn, green beans, peas, a  few jello molds with fruit, and that’s about it for the first round. After an eating break [women did dishes, men watched football, kids played] there was another gathering at the table for dessert. O, another feast!! A table full of cakes, pies, cookies O MY. Then if you stayed long enough into the evening you could go back for “leftovers.” My favorite leftover was mashed potatoes covered with gravy or Grandma’s noodles. Now I recognize all that grease was the real flavoring for my favorite foods!!

So with this is my childhood frame of reference, guess what Thanksgiving Dinner is like at MY house now that I am the Grandma!! I’m not the cook this year and am blessed with a “guest chef” coming in from IL. The menu will be a 20 pound fresh range raised turkey, stuffing and gravy, sweet potatoes, asparagus, green beans, corn, cranberry sauce, and salad. And dessert will be hand made pies, pecan and pumpkin. Son-in-law prefers key lime pie so he gets it of course; but it is purchased. Sorry, son. And I added WINES.

Let’s talk about pumpkin pie. I know that this is not common in Europe. And to you guys it sounds like “green bean pie” would sound to us. So let’s look at the recipe. Pureed cooked pumpkin, sweetened condensed milk, sugar, cinnamon, nutmeg, allspice, and ginger all blended together and baked in a deep pie pastry shell. This makes a sweet and spicy custard pie that is often served with whipped cream or ice cream on top. Quite nice, really.  Of course I happen to like carrot cake … so consider the source!!

Harry and MaryAnn are on their way down here. It is an 11-12 hour drive. They’ll get in about 10:30 tonight and it will take an hour or so to unload all the food and gear. Tomorrow we can start preparations and maybe some baking. And we need to see if that turkey will fit in my European size oven!!! O, if it doesn’t fit there, I have a huge electric roaster that holds 2 turkeys. I use this roaster when I cook at homeless shelters and church banquets. It is huge! I only have 1 oven in my kitchen and that is not common in America. Usually there are 2 small ovens and often an additional range size oven. Since I only need an extra oven a couple of times a year I chose to have a butler pantry/wine bar area instead of an extra bank of ovens. You see my priority is the wine. You got that right.

post chemo 1 day 14 - A REALLY GOOD DAY!!!

Nov 22 2010

This was a good day, all day!! YEAH. No nausea and no extreme fatigue. And for the first time since chemo I discovered myself standing in the shower! My, my…it is the little things that count.

Today was a Dr visit day. He said my blood was “beautiful” so that was a good start. The plan is to modify some of the protocols for this next round of chemo. The chemo on Monday will be followed on Tuesday by the Neulasta shot plus a bag of fluids. Then the following Monday we will check fluids again. OK. That sounds good. And I already have a good collection of nausea pills on hand so I can be pronto with them when needed.

Barbara had encouraged use of electrolyte water and that has really helped. Dr wants to continue that so we will need to make a run to COSTCO for a few cases.  

While we can manage some side effects better this next round, there is nothing we can do about the fatigue. Dr says that the fatigue will be worse this next round and beyond. I don’t do fatigue well. How can I do what I want to do when I can’t even get from chair A to chair B? And with the attention span of a mosquito I wouldn’t get much accomplished anyway!

I am really parked on the tarmac!!!

MaryAnn and Harry will be on their way down her tomorrow and I’m so excited to have them here!!! And they are bringing their dog Pepper, a black lab. So Domino is going to have company too!! What a treat for him!!

I’m ready to enjoy this week 3 which will be the best week of the entire cycle!

post chemo 1 day 13 - mostly a good day

Nov 21 2010

So much for having a 2 day string of good days! Last night I was fine at 9:45 pm. At 10 pm a wall hit me and I headed for the bed. By midnight I was more than nauseous. It cleared up by 1 am and I slept well the rest of the night. This is just crazy.

Barbara suggested I start on electrolyte water to help control the dehydration. We got a case at Whole Foods. The first bottle made a difference. So I will keep pumping it in. Today was a good day. That’s one in a row.

Katherine brought me some fancy moisturizing oil to help with the facial dry skin now that I’m off the premarin and on the chemo. WOW, what a difference with 1 drop of Parisian “caviar oil” worked into the skin. OK, I can do this.

This is 13 days after chemo started and about the time that my hair should begin to fall out. I haven’t noticed any hair in the shower or on the towel yet. The super short hair cut is working well for trying on hats and caps. I started looking at various pins and clips for some bling. It was nice to feel good enough to play with caps and pins.

Mathis and Anita sent new pictures of Samuel. What a treat!! It is already cold enough in Basel Switzerland that Samuel is in sweaters and leggings. And he is all bundled up for outings in the stroller. What a sweet baby!

Tomorrow is a Dr visit day. Maybe I will feel good enough to go to the grocery store afterwards. My almost sister will be on Tues to start preparing our Thanksgiving feast. We may need a few ingredients. And we need some bubbly wines.

post chemo 1 day 12 - a good day

Nov 20 2010

Katherine left today. It was SO GREAT to have her here! I can’t believe I didn’t have the energy to ride along to take her to the airport! It seemed marginally “okay” for Evan to take her without me UNTIL they went out of the driveway. Bummer.

On the positive side, I am on the verge of stringing together 2 good days in a row…well, starting the clock mid day Fri through Sat evening is technically 1½ days and that’s close enough to 2 days. My friend Joan came by today with the cutest brimmed cap in pastel plaids and a tiramisu cake. How fun is that!! And my nap was a solid sleep, not restless at all. I’m declaring this a good day.

The paragraphs below are excerpts from an email I sent to friends of ours and Ken and Katy’s. So if it begins to sound familiar, you were on that earlier email and might as well skip the rest of this blog.  

Ken and Katy jetted home safely and Katy is settling in to rehab. Ken was so smart to add the medical transport benefit on his BCBSTN coverage years ago when the opportunity was offered. I encourage all of us to learn from Ken and investigate getting this benefit for domestic situations. I have always gotten "medivac" insurance when we tour in Europe. I haven't considering adding it when I just go to visit Katherine in Switzerland. I will now!!! And I'll get it for domestic travel. Good grief, this kind of thing could happen to us driving through Pecos TX!!!!  I worked for BC many years and never worked a medical transport claim so it was really interesting for me to get to set Katy's transport in motion. And I'm here to tell you that it is a piece of cake!!! It is probably that this benefit is not a BC or Aetna benefit per se and I’ll end up with AFLAC or something like that. I’ll let you know.

There is another thing we learned during this Katy’s stroke and my chemo ordeals. It is important to continue collecting and nurturing good friends as we get "older." You never know when you will get to share another opportunity for friendship and to make more memories. I wasn't very useful this time because my chemo started right after Katy's stroke. Evan did the "heavy lifting" and shuttled back and forth between Katy at Baylor Plano InPatient and me in Baylor OutPatient Oncology, which are just across the walkway from each other. Ken managed extremely well for a week and was really exhausted by the time Kirsten got here. That's another thing we learned from this event. Bring in the young people when you get too tired. We even put poor Kirsten on a rickety trundle bed in the sewing room and she coped well. I had a bad 1st week of chemo and it was good to have our daughter Katherine come home to review my medical situation and "take charge." It was like living in a dorm for a night or two and you know what....it was just fine!!!  Except for me, everybody took care of themselves. We didn't run out of coffee or cereal or bourbon. And it gave us an opportunity to be with Kirsten again. We haven't gotten to be with her as an adult. Great young woman!!!

So the message here is that it is great to have friends and we have been privileged to love and share with Ken and Katy again. It is the love that counts, not trundle beds or serve yourself menus or overly excited poodles under foot.

chemo 1 day 11 - more fluids

Nov 19 2010

It was back to the Oncology Infusion Clinic today for another liter of fluids. I now know what it feels like to be dehydrated and know to get to the clinic so I don’t have to go to the ER. It is hard to walk around with a bp of 91/56. Apparently there is a significant learning curve to managing intake and out-go during chemo. There are so many pills to take to counteract the side effects of the chemo drugs and then to counteract the pendulum swing from the 1^st pill there is yet another pill to get the swing going back the other way. 

After getting the fluids on board I felt good enough to chew some lunch.

This has been a rough ride. I have an amazing group of family and friends who seem to show up, call, or send something at just the right time to get me through the day. And when a bouquet is on its last legs, another bouquet shows up almost like magic. And it is wonderful!!! Please feel free to call me on the cell phone any time. When I’m taking an “official” nap, I turn the phone to voice mail. If I’m just dozing in the recliner, I probably need to wake up before my neck gets stiff, so please call.

Barbara came over yesterday and fixed my poor dead hair with a new style…a 1” buzz all over. This does look so much better. How can hair die from the tip back to the root? As far as I can tell my hair isn’t falling out yet; certainly not by clumps, but it could be thinning even more. My head gets cold outside but there is enough hair remaining to keep me warm in the house. I can see the near future need for a cover all the time.

My best friend in high school collects antique quilts and antique costume jewelry. Carolyn shared with me her extensive quilt collection and how she uses the jewelry to decorate throughout her beautifully restored county home. I came back home to re-think my jewelry collection in terms of using various pins on decorative pillow covers and tassels. Now I am having a 2^nd re-think about the pins. I think a close fitting hat/cap could be decorated with pins plus beads left over from my jewelry making days and would be a nice thing to wear on a bummer day. It doesn’t look like I will be able to sew any time soon however I may be able to stitch beads.

It has been great to have Katherine here this week. Her best friend from high school joined us for lunch yesterday. Vicki is a pharmacist and mother of a son who survived cancer some years ago. Between the two of them I got an education on chemo drugs. I’m glad they know all this technical stuff and say I’m on the right path. It is all I can do to make it from one pill to the next and know when to go in for fluids.

Evan and I will be unsupervised for a couple of days between Katherine’s departure and before MaryAnn and Harry’s arrival. O, dear.

chemo 1 day 9

Nov 17, 2010

Today was a good day in so many ways and on so many levels. Our friend Katy is back in TN at the best local rehab facility and Ken will be sleeping in his own bed in his own house tonight. How great is that!!

My Mother managed to topple over again last weekend Nov 6, got an ambulance ride to a trauma center [“those are rock hard beds in ambulances and they drive too fast so I get bumped around”] for a full workup, stitches on her lip from a few chipped teeth. She was taken back to the facility to continue in the rehab unit, recovering from her previous UTI etc. Barbara wanted to stay with her a few nights and we had a care giver come in the rest of the time since Mother was disoriented in a strange room. So the “parental responsibility” stress factors have been working overtime for both Barbara and I this past week. Mother is going back to her Alzheimer’s unit and her same room on Saturday. Barbara had wanted to be more directly involved in my 1^st chemo week and now she can catch up. This is a good thing.

Katherine is here for the rest of this week. She took Evan to the grocery store and spent 4 times his usual dollar limit on antioxidant teas, whey protein powder, antioxidant juices from the organic produce cooler, special yogurts and salads and so many things he had never bought before. So far it has all been good. And Katheine makes me suck up that last ounce so she can bring me yet another bottle of something. Plus they have cooked the past two nights and I have eaten enough to have some energy. Today I even went with Katherine down to the NorthPark Macy’s sale for an hour. I took my tripod cane/seat so I never had to stand around. I found 2 nice hats, one wool and one rabbit fur. It will be hat time soon. My hair isn’t falling off yet but sure looks awful. No life or body and almost all dirty grey. Hats may be a good thing.

My friend Julie O sent me a bunch of the BEST chocolate chip cookies!! Fantastic!! We made rice pudding in the crockpot to balance off dessert…one dark + one light = balance. Now just try to top homemade cookies and pudding for comfort food!!!!

I’m tired tonight. This is probably a good kind of tired. Dr said I need to exercise so I went to the Mall. Dr said I need to drink more and I am. Of course that leads to more exercise, hiking to the bathroom. Being tired is okay as long as I did something to deserve to be tired. And I did.

Blog 10 post chemo 1 day 8

Nov 16, 2010

I survived the fist week of chemo but not with any positive thoughts about it. Monday I went back to the Oncology center and was barely mobile. Dr said I was a liter low on fluid, WBC was low, had lost 5 pounds and I needed an antibiotic. So there I landed again, back in the infusion chair sucking up liquids via the power port. And for the mouth sores I got a great bottle numbing medicine that is fantastic. So after a few hours “hanging around the bottle,” I got some color, some energy, some life!!!

So now I know that the first week is Hell, yet I have to eat and drink anyway! That is just ducky….gag, eat, gag…drink, spit, drink…repeat. My almost sister Mary Ann will be here to get me through the first week of Chemo 2. And I have learned that getting an extra liter of IV liquid can make all the difference in my world so we may go in for a liter on Thurs or Fri.

I felt good enough Monday night to talk with Ken and Kirsten when they got home. Katy is ready to handle the air medical transport home on Wednesday. Kirsten is quite organized and got the car re-loaded, re-organized. Katy’s sister and bro-in-law are flying down to drive the car back early next week. It all happened so nicely with Kirsten in charge. This morning Evan picked up Kirsten at the hospital at noon and took her to the airport. It was so nice to have her here.

Today I felt so good that I went to see our newest baby in the family. Vicki and Jeff’s new baby boy is beautiful. And it was great to be with long time friends Bill and LaVerne and new baby. It was my first really alive day post chemo 1/1. Bring on the IV fluids!!!

Tonight I had dinner. Evan did steaks, baked potatoes and salad. Katherine needs to get her TX diet fix!!!

Chemo 1 day 6

Nov 14, 2010

Niece Martha came by yesterday with the best apple crisp EVER!! That child definitely got the baking gene!!! Sprouts had the best looking Granny Smith apples and Martha did them PROUD!! Thank you!

Where is my real life? This chemo life is not working for me!!! Last night was a nightmare of misery due to eating too much [hamburger/ff/shake] and paying a BIG price. Today I’m eating every 2 hrs just enough to not be hungry. So from here on it is a “kiddy meal” size serving and not much later than dinner time.

My planned life would have found me in the DC suburbs this week, enjoying my niece’s new apt and new job as a PHD researcher at NIH. I’ve moved so many times and have this unpacking and organizing a new house down to an art form. I really wanted to share that fun with Natalie. Once the house is found and boxes are dropped on the floor, it is time to find the stores for good food, find the hardware store for those wayward screws, and get the pictures on the walls. I love doing this kind of project!! Natalie is very talented so she will get by without me. Sorry, woman. As for learning to drive on the Beltway, well, I suggest venturing out there only on the weekends until you get fearless.

Tomorrow is a dr appointment day. I need definitions of “wet noodle” and “fatigue” and food plans and sore mouth. I need to know what the real baseline is. Does fatigue mean just generic tired or is it more like “can I make it to that chair over there?” What is it? And is this the top of the baseline or is this the bottom of the baseline?

Kirsten got here last night to discover that she is on a trundle bed in the sewing room. She is a good sport. We couldn’t get the bed to unfold and she and Ken accomplished upright. But it was unstable so she decided to sleep on it at floor level. What a good kid!!! Today Katy called and talked to me. She sounded strong and had good speech. We are just waiting for bp and INR to stabilize enough to transport her to TN. Kirsten is a big help to her parents. Ken needs to get back into his own space so he can relax even a little more.

My friend Julie O in Tucson is sending chocolate chip cookies next week. YEA! She is burning a sheet for our friend Robert. I always burned a sheet of cookies back in the day when the girls were home. And no self respecting kid would ever eat a burned cookie [“One more crispy and she would have given it to the dog!! I’m not eating that!] and neither would they eat a “scraped” cookie [“How did she decide between giving it to kids or the dog?”]  So I got the scraped cookies. I’m looking forward to just plain cookies!!

Where is our real life?? We should be ushering Ken and Katy off to AZ, planning our own departure for AZ in Dec. I guess we just declare this month a loss and move on. Ione, I will get the Entertainer’s material and clothing shipped out to you this week. Both Katy and I had a few things for the costume shed.

Post chemo 1 day 5

Nov 13, 2010

This is 5 days post chemo 1 and I’m hanging in there. This is another good day, basically. I’m having very little bone pain and the knee joint has gotten better with pain patch and bed rest. Where is this dizziness coming from? Moving from place A to place B has to be planned so I have something to hold on to or am well balanced. This is a strange condition!!!

Katy is not having a good day today. She might be over tired from physical therapy yesterday. Kirsten will get into DFW later this pm and Evan will take her to the hospital. Katy’s b.p. is still on the high side, not worrisome, just higher than desirable. Ken is tired and stressed. I wish we could do more for him, but honestly I don’t know what it would be. If you readers think of something PLEASE let us know. We see him at breakfast and at bedtime, provide cereal in the morning and bourbon/snacks at night times. We talk during the day and that is about it. I feel helpless. I can’t go to the hospital now that chemo has started. I would like to support him every hour.

We carved out a spot for Kirsten in my sewing room. Right…..the sewing room. So you know that she will be “snug as a bug in a rug” because of all the stuff I have stashed in that room. I had to let Evan help me clear of the cutting surfaces and stuff fabric into the closets. I don’t remember the last time he ventured deep into my sanctuary. Thank goodness his Mother and Sister both had/have large fabric stashes. He might think this is “normal.” Actually Elin taught me a better word than stash for “extra” fabric….resources. I have excess resources.

It is so strange for me to need a reminder to eat!! And when I do eat I’m not hungry. This is NOT NORMAL for me. So I started charting intake just to remember to eat. I’ve ordered a big hamburger for dinner. Evan will drive thru Braum’s on the way home. Hope the burger still sounds/smells good when it arrives!!

Katherine is at the GA TECH game in Atlanta today. Last time we checked on the score TECH was not winning. O, well, she will be having fun anyway.

Domino is having a busy day. The young squirrel keeps coming back into the yard for the corn, Domino charges the squirrel, squirrel flies up tree, much barking ensues from both parties. Squirrel finally flies across the fence to get some peace and quiet. Wait an hour and repeat process. I bought this corn in IL and hauled it down here just so Domino could have dog-type fun and I could watch him having fun!! Is this dog spoiled or what?