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?

Post chemo 1 Day 4

Nov 11, 2010  Post chemo 1 Day 4

YEAH……..this has been a much better day!!! No nausea and no big pain. I even got up enough steam to shower and dress. That was my only accomplishment that involves exertion. Wonderful people came by with cookies and pudding. Thank you, Martha and Joan. And Julie O in Tucson is sending more cookies!! This is like Christmas!!! And when I eat the cookies I need a drink so I’m increasing my fluid intake at the same time. This is a good thing!!!

Our friend Katy got to leave ICU for a regular room today. This will be better for both of them. I got to help them a little today. They have insurance coverage through BC TN which includes medical air transport so I learned how to set that process in motion for them. The air transport flight will take Ken along with Katy to a hospital in Chattanooga. When Katy is stable enough to transport and there is a bed waiting in Chattanooga she can be moved back to her home doctors and facilities and support group. She isn’t ready to move yet and now we have to find a rehab facility here to get her ready for transport. My friend Joan and I have toured probably every rehab center in Richardson and Plano over the past few years looking for the right placements for our various parents. So we have the basic facility facts as well as site viists and just need the right match for Katy’s needs and her coverage. Finding a bed in a great place will be a job for tomorrow. Daughter Kirsten will be coming here for the weekend and checking on her parents. Kirsten has been warned that I am a not a good hostess at this point and that she will have to serve herself. It will be good to see Kirsten again. She and our youngest daughter were in church and high school together in Alexandria VA way back when.

My God-daughter is home with their new baby boy and the pictures are darling!! Vickie called today to invite us to lunch next Tuesday and I can hardly wait!! It will be a fun outing vs this oncology routine.

Katherine is in Atlanta with friends for the GA Tech game this weekend and will be coming to Dallas on Monday. She wants to make sure I’m being a compliant patient and no doubt will go over my drug regimes to make sure the Dr is on top of the latest Roche drugs. The drug claims are showing up on the computer already. Thankfully nothing has bounced yet.

This is a good day.

Day 3 of post Chemo 1

Nov 10, 2010 

This is a “wet noodle” day for sure. No al dente for me today. The nausea is well controlled with these $700 pills. Amazing isn’t it!!! And the bone pain that is a follow on to the Neulasta is coming on nicely. Tylenol is keeping it manageable at much less cost. And today my “sleeper helper” was off to the SPA for the day so I was lonesome in my bed wandering.

I had a trip planned to go to NYC next month. Not just any trip…an escorted couture fabric shopping trip. And I had invited my best friend from High School days to join me.  Fast forward to Breast Cancer Dx: I would be flying on Day 3 post Chemo 2 treatment. I clearly see that there is no way I could manage the required level of activity after Chemo 2 since the effects of the drugs are escalating with each infusion. I had to send Carolyn a note that I am forced to stay on the tarmac for this trip. Maybe this sadness is contributing to the “wet noodle” effect. I will have to experience this trip vicariously through Carolyn and her daughter’s reports and pictures.

Our friend Katy is still in the hospital here at Baylor Plano. The stroke has taken a toll on both Ken and Katy. Ken is such an easy guest. We just wish we had Katy here too.

Cancer is the one disease or condition I have ever had that depressed my appetite!! I have to remember to eat. Dr suggests 6 small meals rather than the traditional 3 American meals. I’m having trouble getting 3 small meals. Then there is the 80 oz of fluids issue. I’m having to measure and log intake because I don’t like plain water, but need fluids to keep the chemo meds from collecting in the bladder and eroding the lining. So between the fluids and the meds I have quite a spreadsheet to keep track of it all.

I have a craving for cookies and pudding and soups. This may be the way I survive the treatment time. Several of you readers have sent notes asking what you can do. If you have cookies or pudding or soup to share, stop on by the house.

Your continued positive thoughts and prayers are appreciated.

1 Day Post Chemo

 Nov 9, 2011

The first day of chemo went very well, uneventful just like I had hoped. The first night post chemo was not good. Nausea ad nauseaum all night. That belch with no result, burn with no relief kind of miserable nights I had before the gods invented Prilosec/Nexium. Today I had to go back to the Oncology Clinic for the $8000 Neulasta shot and ask for more nausea drugs. We picked up a script for Zofran, $700 for 20 pills. Good Grief, Charlie Brown, this is getting expensive FAST. Thank God for Rx coverage through Aetna.

Today I got great relief after starting the Zofran and I slept most of the afternoon, a soft restful nap all by myself in a freshly cleaned house. I think the addition of weekly cleaning service is the best RX for me. I doubt if Aetna will cover any of that expense. Domino got the day off as my “sleeper helper” and spent the day at Doggie Day Care. He wasn’t the first one to arrive so had to serve as “fresh butt” for his other playmates. It takes him all morning to work his way to the top of the pack and it must be exhausting work because he slept through his favorite commercials on the TV tonight.

Tomorrow Domino goes for his monthly Spa Day at the groomer. He gets a bath, blow dry, massage, and finally a style cut. I get a hair cut periodically and Evan goes to a barber. You see where our priorities lie!!! Wonder what is in store for me tomorrow?

Chemo TX #1........I survived!!!!

Nov 8, 2010

Chemo treatment 1 was today and I was more nervous that having babies or general surgery. The reality was much less than the anticipation. So I’m declaring it a success.

My pre-treatment echo was great “you have the heart of a teenager”; the CT scan was good; the labs were excellent. And my port was in and ready to be accessed. I did ask why the port can’t be inserted in a fluffy place rather than on a bone. The answer is pure doctor logic “the port is on your right side because they took out the lymph nodes on your left side.” So I pointed to several fluffy places on side right side that could handle a power port nicely. Not good enough. He says, “Actually placing it on the collar bone makes it easily accessible to the large vein we need to use. Do you want to move the port at this point?” I said, “Hell no, don’t move it now! But next time you go to a Power Port conference please tell them to find a fluffy spot for these ports!!!”

So the treatment began with some Atavan and Benadryl which was nice. Then real chemo started with Taxotere/Docetaxel that went nicely. No reaction or problems. Then the Adriamycin/Doxorubicin bag when up. This they infused at half speed to begin with and I had no reaction. So the RN opened it up to regular speed and that was fine.

Cycloposphamide is the more risky drug at first infusion. The RN started the bag with a very slow drip and stayed with me because some people react to those first drips. I didn’t have a problem so she opened it up to ¼ speed for 25% of the bag. No problems showed up so we went up to ½ speed for half a bag and still no reaction. So the last 25% of the bag went in a full speed and no problems. This is good. So next treatment it will start a full speed.

I got more anti nausea drugs for the next three days. This might be a good thing as I’m burping tonight already. Could be anxiety related. Tomorrow I go in for a Neulasta shot to build white blood cell in the bone marrow. This could cause pain in the bones not joints. And there is a pain pill for that!!!

Well, it’s over. I survived. And now I have only 5 more to go. Now we find out how I will feel AFTER a treatment. I would love to just keep on with my regular life; however I know there will be some SERIOUS adjustments.

American Airlines Road Warrior Contest, 2009

American Airlines Road Warrior Contest, 2009

8 reasons I qualify to be an American Airlines Road Warrior [50 words max each]

1. I have “Seat Guru” bookmarked and it opens to American Airlines. I’m retired now so I fly coach. With one child in Switzerland, one in Michigan, one in Texas, a grand daughter in the Army, and relatives on both coasts, I am a very frequent flier.

2. I can ask for directions to the toilet in any country, any language even though I only speak American. I know where the one and only FREE and CLEAN women’s toilet is in Italy. I’ve located the “Flush” button in every passenger train compartment except one. Sorry about that. 

3. My seatmates on an overnight flight had an exhausted, screaming 3 mo old baby. I asked to hold the baby. I swaddled and snuggled him close, like we did in the old days. Baby and I both slept. Upon landing, the man behind me patted me on the head and said “Bless You, Lady.”

4. My daughter demonstrated how to use European luggage carts on escalators. Next trip I demonstrated for my husband. Except I had small bags on top of the strap and the brake system is opposite of American logic. We dumped 2 bags on a lady ahead of us. Bummer.

5. We bought our dogs two special biscuits in Switzerland.  Husband reports said biscuits on the US customs form.  His honesty was reward with a trip to Super Screening behind foreigners with truck loads of suitcases. After much waiting the agent confiscated the biscuits because he couldn’t read the label. Poor doggies.

6. Here are 2 hints for driving in the UK. First, the rear view mirrors fold in nicely when mail boxes are tapped along the country roads road. Second, there is no limit to the number of times you can go around a round-about before picking the wrong exit.

7. The Louvre is wonderful. We saw more of it than most tourists. We couldn’t find our exit concourse. We kept ending up in the Egyptian mummy exhibit. We thought it was an omen after the seventh circuit. I wrote notes to the kids in my Palm Pilot when Voila!...........

8.   Prague would be a good place to sell handheld GPS devices to Americans. We were so lost and finally asked directions of a couple on the street. They carefully directed us to a version of Tourist Purgatory. I hope they enjoy telling this story as much as I do.

I didn't win.

the day before.........

Nov 7, 2010

It is the day before my 1^st chemo “treatment” and I am nervous. I think that is normal. If it isn’t normal, so be it; I’m nervous anyway.

This power port seems like a good idea for dumping drugs into my veins. The logic is that having that one surgery [two cuts, one session] will let me avoid getting a vein punctured every time oncology staff wants to check something going in or taking blood out. I have tiny rolling veins so it takes 3 + tries to find a good vein almost each event. One stick sounds good. The placement of the port could be improved. I think it is setting on a bone. Let’s face facts….I’m “fluffy” virtually all over, no skinny parts. So why is this port setting on my collar bone and not in a fluffier spot??? I protest. Not enough to have it moved, mind you….I just protest.

Our friends Ken and Katy got to Dallas yesterday. We are not having fun yet. Katy is having aphasia problems probably secondary to a HIT clot or small stroke. So instead of coming to our house I directed them to Baylor Plano for the Heart Hospital and we met there. Katy just got out of a hospital in TN 2 weeks ago due to Heparin issues and was not ready to go back to any hospital so soon. Her “event” seems to have started Thursday [in hindsight] and got quite involved by Friday afternoon. She got super care in the Heart ER and was admitted for the night at the Baylor General Hospital across the parking lot from the Heart Hospital. Overnight the Hospitalist here talked to her doctors in TN and seemed to have a plan for treatment. I don’t know what it is yet. I can‘t go to visit her today because of my pending chemo [at the same hospital] and the risk of picking up some generic germ or virus. [I went to the Heart ER last night…bad arteries aren’t contagious.] Evan is at the hospital with Ken today. Ken will come back here tonight. We’ll just set up this house as a nursing home for the duration of the women’s illnesses and staffing will be done by well experienced [trained??] husbands. Domino will have his choice of two women just lying in beds waiting for his return. What a life!!! At least one body will be having fun!!!!

Well, I’m off to get my body prepared for tomorrow’s sacrifice procedures…proper cleansing and drugs to make it go easier. Keep those positive thoughts and prayers coming my way and please double up on prayers for Katy.

Ann  

more pre-chemo "fun"

Today the echocardiogram went well enough that I got to leave right away so that’s a good sign. Then the bone scan was easy enough that I went to sleep before it was over. The tech showed me my knees. They don’t match. The left knee looks like a knee. The right knee looks like globs of play dough abused by a 2 yr old. Yikes. I didn’t know it was that bad. Another repair job to put on the calendar when I get bored traveling.

When I got home there was a beautiful flower arrangement on the porch! Thank you, Steve!

Even though this was a very easy day, relatively speaking [no surgery, no pain], I came home for a pain pill with an industrial strength nap chaser. The port incisions hurt even with the swelling down significantly. Domino spent the day at Doggie Day Care so he helped me nap. He was exhausted…having gotten to the Center late he was “fresh butt” for all the regular dogs and it takes hard dog work to get to the top of the pack.

I have been blessed with so many friends who have sent great cards, some encouraging and some funny. And some how the perfect card arrives on just the very day it is needed most. Thank you, card senders! This is a good time for me to say thanks to several people who have sent such considerate gifts. Janet J, you rock! The Cancer Awareness thermal mug will be perfect to take to chemo treatments as well as use to keep me hydrated between treatments. Kay A, how thoughtful of you to send a journal and encouragement from a survivor about using it. Extra bonus, the mug and the journal are color coordinated….I can be stylish for chemo!!! Mary Ann P, what a book…”Kickin’ Cancer’s Butt”…thank you. And there is no one who gives me more books than Katherine. Thank you, dear, for “Earth” and Hoda Kotb’s autobiography. Great fun reads while I was recovering from surgery. I’ve learned much from y’all. If/when I have a friend facing this cancer drill. I’m going to send a gift from this selection.

Tomorrow is the last pre-chemo procedure, a CT scan. That should be easy and I’ll be done by 1:00. Then off to the grocery store to stock up so Katy to cook up a storm over the weekend.

Stay turned.

blog 2: powerport news

Remember that $8k shot that I will get after each chemo? Well, it is known in the US as Amgen. The company Katherine works for [Roche which owns Genentech] makes this stuff.  Now I understand how Katherine is able to live in Switzerland and take me along for great trips in Europe and beyond! You go, woman, keep making these expensive drugs!!

Today’s new adventure was getting a power port inserted in my neck and chest. Here’s where you can see the devise and specifics: http://www.portadvantage.com/ Well, it is a cute little ditty, but will never become a fashion accessory until it can be left on the outside. The purpose of the port is to allow the various medical people to pour drugs into me and take blood out of me without constant vein stabs. This is really good for me since I have tiny, slippery veins that sometimes require the super good tech to find usable vein.

The surgery wasn’t difficult at all. I would have preferred black-out sedation to the “conscious sedation” mode of anesthetic. Really, I didn’t contribute any expertise to the activity; I just provided the body. The radiologist surgeon did a nice job. The neck incision hurts tonight and feels like the tape is too tight. I guess that any swelling will go down tomorrow and it will feel better.

Domino had to check me out when I got home. He knew I’d been back to the vet and needed sympathy. So we took a nap. Naps solve a myriad of problems.

Our neighbor Diana came by tonight with dinner all ready for Evan to serve! How wonderful. Thank you, Diana.

Tomorrow’s adventure is an echocardiogram and a bone scan. It will be a better day because I can have my coffee before the show gets on the road. Any day that starts with coffee can’t be all bad.

Ann

Blog 1: stranded on the tarmac; my flight has been grounded

I decided to blog about my great retirement travels because I want to share my great fun traveling around the world and to encourage friends to join me either in spirit or with luggage in hand. I love to travel and will take you along for the ride. I want to see at least one reservation booked on my American Airlines Gold Account. I entered the AA contest to win a zillion miles and will post a few of the supporting reasons as we go along.

Unfortunately my next flight plans have been grounded. I was diagnosed with Breast Cancer, a Stage 2, Grade 3, invasive and aggressive type of cancer. The surgery on Oct 14 was successful in that the 5 cm mass was removed and margins are clean. Five lymph nodes were positive for cancer and were removed. This kind of cancer indicates the need for both chemotherapy and radiation to be followed by 5 years of oral medication. The cancer is estrogen and progesterone positive which the oncologist says is a good thing because this type “behaves better” through treatment. .

The surgery took some time to heal and I’m now well enough to get ready for chemotherapy. But before chemo, I need to get a port inserted in a major chest vein so the chemo drugs can be infused without puncture after puncture. The port surgery is scheduled for Nov 3 and will use up the whole day at the hospital. Then on Nov 4 I go back to the hospital for an echocardiogram in the morning and a bone scan in the afternoon. The dye is injected at noon and then I wait for 3 hours for the actual scan. Another day shot!!! Then on Nov 5 I’m off to the oncology clinic for a CT scan. Hopefully that will be only a half day. Then I’ll have the weekend to recover from the testing hassles.

Our good friends Ken and Katy  should be here over the weekend plus a few days both sides of the weekend. What a blessing!!! In addition to just sharing time together, Katy wants to do some home cookin’ for us. Well, honey, it won’t take me long to find you an apron!! I think I’ll be cuddled up on the couch with Domino sucking my thumb. Ken and Katy will travel on to Tucson early in the week. We’ll miss not getting to play with our Tucson friends and Domino will REALLY miss daily dog park visits. 

Monday Nov 8 at 1:30 I go back to the oncology clinic for my first chemotherapy session. It should take 4 hours since it is the 1^st one.  Here’s the recipe for my cocktail, such as it is. It will include Taxotere [Docetaxel] plus Adriamycin [Doxorubicin] and Cytoxan [Cyclophosphamide] to be followed the next day by an injection of Neulasta [pegfilgrastim]. The neulasta shot is $8000 per shot!! The chemo cocktail tries to kill me and the neulasta is to increase my white blood cell count. Whee.

The plan is for this chemo drill to repeat every 3 weeks for 6 cycles by which time I will be tired, joints aching, bald, have nausea and worse……..and those are the lesser evils. I can hardly wait to get this started …….. no, really…. The sooner it gets started the sooner it gets finished and I can get back on the road again.

I’ll post more this week and let you know how I’m doing and what Katy is cooking.