Saturday, January 31, 2009

My new love

I am so thankful for every day that I feel good. I slept in a little this morning after my big night out at the hockey game. Marty had a doctor appointment to get an antibiotic for his cold that was starting to look like an infection.
Baby Isaac's Bris (circumcision and party) is tomorrow here at our house. I did shopping for food and a new vacuum. (Marty ruined mine by sweeping up dry wall dust when he was doing demolition at one of his buildings. Lucky for him I found the same thing for half the price that I originally paid for it.)
A nap was in order after all that: most of you know how I hate shopping. Although I do have to admit that I walked into Boscov's to check out the price of the vacuums and walked out with 3 plant stands, 3 serving plates and and service for 12 christmas dishes. All for $42.00! Can you believe it? Don't worry Caitlin and Allie, I did not buy MORE holiday dishes for myself. I gave them to Penny.
Marty and I made lasagnes to serve at our little party, so we won't have to fuss tomorrow. I just have to do a little tidying and play with my new vacuum and I'll be good to go.
I will say it again: I am so thankful for everyday that I feel good.

Friday, January 30, 2009

Go Royals

My friend Judi had tickets from her work to go to a Reading Royals hockey game tonight. She took this picture of me on her Blackberry. We saw a lot action at our end and the Royals won 3-1.
I went to the pool this morning and swam before work. It was the first time since I had the port put in and felt great. It was also the first time since my hair fell out because there was shampoo and conditioner in my gym bag. I wasn't sure if I should go as a baldy or not, so I dropped by the pool supply store next to the gym and bought a speedo cap. The upside of no hair is that it really cuts down on the time getting dressed after swimming. No hairdryers or styling: just pop on the wig or tie on a scarf!
I worked today and then met my friends for fancy appetizers at Judy's on Cherry before the hockey game. It feels good to do some fun things.
My buddy Bob brought me chicken noodle soup today I am looking forward to scarfing that down tomorrow. For some reason I've been craving chicken soup.

Thursday, January 29, 2009

All's right with the world


I worked a full day today, ate 3 meals, only puked one, the driveway is clear and Marty came home. I am content with that.
My clients were all glad to see me and were very encouraging.
And I feel like myself. Finally. However, I am really tired so it is off to bed I go.

A new day dawning


I got up yesterday morning to 5 inches of snow and the front of the house glazed in ice. I had planned to go go to work for team meeting, but it was canceled. I don't know if I would have felt well enough in any case. Marty is still Harrisburg, so I spent the day watching movies, answering the phone, cleaning out the bathroom closet. I still felt too yucky to even write and it was starting to depress me. I kept thinking that every day I was going to feel better. Every day I didn't. One of my co-worker shared the jolly news that she heard each cheomtherapy got worse. THAT wasn't encouraging.
But I don't think it is true because last night, I started to feel better. I found myself tidying, attending to the wash, making arrangements to get the driveway plowed today. This morning I woke up feeling 95% better. I have visits scheduled at work, so I am off to get dressed before the guy with the plow shows up. The picture is the sunrise this morning from my office window

Tuesday, January 27, 2009

Still not up to snuff.


I took a client to an appointment this morning. It was distracting, but I didn't feel well, so I went home and had NFP secretary Jady cancel my afternoon appointments. I slept all afternoon then Penny dropped by after school and beat me at Cribbage. I feel mostly alright, just the "patina" a constant underlying nausea, which gets worse every time I think of anything connected with cancer or chemotherapy. I am able to eat (Have I ever not been able to eat?) so that makes life worthwhile. This happened last time but was gone on day 10, which will be on Thursday this go round .
The picture is of the Maggie Simpson pajama pants that Caitlin made and sent me last week.

Monday, January 26, 2009

Think Spring

Marty and I bought these Primroses at Produce Junction, the place where I got all the violets for our wedding. They are making the bathroom very cheerful.
The smile is mostly fake. (I did feel well enough to take the picture after all!) I really don't feel much better, so I canceled my visits at work for today. I called the Dr.'s office and the nurse had a few suggestions. She said that I probably feel poorly because of coming off the steroids that they give me to help with nausea. I'll just sleep and eat my little meals every so often I guess! And wait for it to over.

Sunday, January 25, 2009

A bad day.


I had no energy today. I couldn't get going. The same thing happened after the last cycle, only it was worse last time. I think the shot they give me to build up the white blood cells just knocks me out. I spent most of the day on the couch or in bed. Marty was on Grandpa duty: he took Kyle to Ozzie's for the afternoon! Nora and Isaac just chilled. He's happy with mama and milk. So far he just eats and sleeps and spends 20 minutes a day looking at us.
I am supposed to work tomorrow, but I don't know if I will be up for it. I had wanted to go sing this weekend but just didn't have the energy. Hopefully, this will be gone in a day or two.

Some more details on Cycle Two

Mom received her new diagnosis which is Large Cell Neuroendocrine Tumor with Small Cell components.  Both large and small cell lung cancers are neuroendocrine tumors (arose from neuroendocrine cells). It appears she has a combined neuroendocrine tumor which explains why they had a hard time making the diagnosis. I believe her treatment plan will be very much the same as it was for small cell and she received the same chemo regimen as her first cycle.  The prognosis with large cell is better then small cell.  
Before each cycle mom must undergo blood tests to assure she can withstand the treatment.  All her blood numbers were good but they also test for different liver enzymes and functions.  When they tested the liver enzymes before her first treatment all the of the liver enzymes were slightly higher then the normal range and her LDH (one of the liver enzymes) was extremely high.  When they did the blood tests this time after just round of chemo all her liver enzymes had dropped into the normal range even her LDH which when from like 900 to 200!  This a really good sign that the tumors on the liver are shrinking as well as after the biopsy the doctor thought the lung tumor had shrunk significantly.  
Mom will have a CT scan the week before before her next cycle and will meet with a new oncologist at Reading that Friday.  We don't have an appointment at Fox Chase but we'll send them the CT results and consult with them over the phone.  The treatment plan shouldn't change unless the cancer isn't responding however as mentioned above we have some pretty clear evidence that it is working.  The nurse who set up the appointment with the Doctor at Reading said he was funny which will be a quite different then moms current oncologist.
Pretty much the cycle was the same as the first one.  We got better instructions on how mom should take the one steroid she was was given so hopefully that will make her feel better post-treatment.  This was the first cycle that we used the port.  Everyone I've talked to and everything I have read said that getting a port is the best thing you can do but I think the jury is still out on Mom's experience.  The first day went well except that mom can taste the saline when they push it which is rather unpleasant.  The second day we had to get the port reaccessed (they could have just left the port "accessed" leaving the needle in overnight with a piece of plastic over it) and the nurse really struggled.  Which was really painful for me so I can only guess what it was like for mom who was the one actually getting the needle jabbed in.  Mom didn't feel so well afterwards which may have been a blessing in disguise because then they ran an extra anti-nausea drug before her treatment on both day 2 and day 3 which seemed to help a lot.  Mom then decided to leave the port accessed overnight for the third day and after talking to several people it seems like having problems accessing a port is very rare so hopefully it won't happen again.  I have mint essence oils for her to smell when they are pushing the saline but we found that sucking on a strong peppermint lifesaver is stronger then the saline so hopefully that will make her more comfortable in the future.

Saturday, January 24, 2009

Busy weekend

It is sort of hard to blog right after treatments. Just thinking about it gives me an underlying feeling of ick, so it's hard to write about it. I should just let Allie do it when I talk about medical stuff.
After unintentionally putting in a full day of work yesterday, I was tired and slept great. We also are blessed to have Nora, Kyle and Baby Isaac with us this weekend. Since I wasn't sure what my energy level would be if I were to go to them, they came to me. I had lots of energy this morning, so Kyle and I went to the bagel store, Target and the Farmer's Market. We had a great time and he was very well behaved. Kyle is bundle of energy and even without chemotherapy, I think I would have needed to sleep all afternoon! Baby Isaac, (Zac) just eats and sleeps and never makes a peep. I hope to get some pictures of both of them tomorrow.
I even cooked dinner: salmon, roasted vegetables and homemade biscuits and applesauce. I feels satisfying just to do normal everyday things. And it was really fun being the Grandma.

Friday, January 23, 2009

Chemo done for this cycle!

I am happy to be done with cycle 2 of chemo. 2 down 4 to go. I got my shot this morning to boost my white cell count. I am tired today and trying to work a little. I'll go home soon. The chemotherapy was ok this time. I had the port which they punched a needle into the first day. I can leave the same needle in for all the three days. They didn't give me that options the first day and pulled it, which was regrettable because the nurse had a hard time putting the needle in the second day. They also added another antinausea drug the second and third day. It seemed to help later in the day.
Allie took good care of me. She kept me amused and well stocked with treats. Actually, she took care of every thing, like writing down all my appointments and treatments, making sure I got all my meals. I am able to eat, and sleep and sleep and sleep.
I went to my yoga class that they have for cancer patients last night and that was relaxing. They have a lot of inexpensive services at the cancer center. I have a massage scheduled in two weeks. Never had one so I'm looking forward to that.

Wednesday, January 21, 2009

Chemo round 2





Nora and the baby are doing well. She said she was up and doesn't have much pain and the baby is nursing well. I hope to make it to Hershey to see them tomorrow. Fortunately, Marty took these pictures
The first day of the chemo is about 7 hours. Day 2 and Day 3 will about 1 and a half hours. They used to port today and that worked out great. I was a little nervous and it wasn't any worse than getting stuck with an IV. They had given me lidocaine to put on hour ahead of time to numb it.
Allie and I dragged along a number of things to amuse us, but we ended up watching the Inauguration all day. I could have slept, but I stayed awake until after the address. There were some great interviews with people in the crowd. they had cute stories about the Bush girls meeting with the Obama girls and showing them fun places in the White House and which staff to go to if one need as hug. If you didn't see the Inauguration, you have to go to you tube and watch Aretha Franklin sing God Bless America and see her hat. It was stunning in the Church Lady Sort of way.
Allie and both slept when we got home since we had missed so much sleep the night before. We were glad for our crockpot dinner. Just made some potatoes and carrots. I took some antinausea stuff which worked well. I had an appetite and ate just fine. Time for bed even though we don't go in until 11:30 tomorrow.

Addendem to Yesterday (Monday)

After I had my little back and forth the medicine people, Allie and I met Penny for lunch at the Good Eatz Cafe in West Reading. They have a really interesting menu and feature local foods. There is something for everyone, even carnivores and glutin free folks. We had a delightful time and made it home before the driveway became impassible.

Tuesday, January 20, 2009

Just when you think everything is under control

After we badgered the oncologists into starting chemo tomorrow, I was feeling pretty content. Then just as we were sitting down to dinner, Nora called and said she was having contractions and she thought her water broke. So much for the planned c-section. We quickly ate dinner, Marty went to the hospital in Hershey and Allie and I went to Harrisburg to relieve the neighbor who was watching Kyle. We had a good time doing the bedtime routine with him.
Isaac McGhee was born by c-section around 10:30 PM. He weighed 7 lb. 4 oz. Every one seemed to be doing well. Marty came back to the house to stay with Kyle and we came home to get up for our chem0 date at 7:15.

Monday, January 19, 2009

So much for Good News

We had an appointment with the Infusion room at 8:00 this morning, but decided to call before we went in, since if they didn't have the biopsy results at 4:00 on Friday we doubted they would have the results at 8:00 on monday.  Mom spoke to the Nurse Manager who told us we would have to have the results by 10:00 if we wanted to get the infusion today since it takes ~ 8 hours.  So we called Fox Chase and Doctor called us back around 10:30.  She told us that pathology did not yet have the results, they weren't happy with the staining and were going to repeat it, also when I talked to the doctor she told me there weren't enough cells which were causing some problems as well.  In the defense of the pathologists I've been looking at the staining and they are very complicated and time consuming stains.  However, even though the pathologists couldn't give us definite results it seems very likely that the diagnosis will be Large Cell Neuroendocrine Carcinoma (LCNEC).  LCNEC is very similar to the small cell lung diagnosis because both are neuroendocrine tumors; and the treatment will be basically the same thing, however the prognosis is slightly better.  The doctor wanted to wait until we had definite results before we started the next round of chemo and wanted to push it back until Wednesday, which we informed her that it wasn't pushing it back 1 day but rather 10 days from when our next treatment was supposed to be.  So we got her to consult with another oncologist and they decided to let us start treatment tomorrow even though the pathologists won't have the results by then.  Nora's C-section is scheduled for Wednesday morning and we were hoping to go to see the baby, but if we had 8 hours of Chemo infusions that would be impossible but now we'll just have the 1.5 hour morning session and have the afternoon free to see the new baby.  So tomorrow morning at 7:15 we'll start round two of chemo.  We should really go buy a lottery ticket though because statistically unlikely events keep occuring LCNEC is even rarer then small cell with 10% of neuroendocrine carcinomas and <1% of all lung cancers; plus there is a 26% chance of snow and it is snowing like crazy!

Sunday, January 18, 2009

We had enough snow today to keep me in this afternoon and evening. It probably would have been fine except for the driveway. So instead Allie and I played 500 rummy and watched the Eagles almost make it to the Super Bowl.
Allie and I took the Christmas tree down. It is kind of fun pitching it over the deck railing and rolling it down the hill. We should have taken some pictures.
Tomorrow, hopefully we will make it down the driveway and report to the hospital at 8:00. What happens after that is anyone's guess. If they didn't have the pathology report at 5:00 on Friday, I don't think they are going to have it at 8:00 on Monday morning.
Will keep you posted.

Saturday, January 17, 2009

Off to the Dance


My New Year's Resolutions are to sing and dance more, so I went to the contra dance in Lancaster tonight. That is me in my twirly skirt. I am going to try to add a video, in case there you want to know what contra dancing is. Tomorrow I'll go sing!
Allie and I had a pleasant day shopping. We went out in the country to a winter market and bought eggs, carrots, honey and cider from local growers, then to the Fairgrounds Farmer's Market. We then canceled out the good effects of that and went to Target and Dress Barn and bought stuff on sale made in China.

video

Friday, January 16, 2009

Stylin'


It was way too cold for Wendy today, unless she wore a hat. I had visions of Wendy coming off with the hat at a client's house, so I made alternative headgear decisions. This is my little fleece cap that I wear to sleep. I added a silky scarf that my co-worker, Rosie, gave me a few years ago.
It's tough to dress in cold weather. When I am choosing my clothes, I review my appointment schedule: who pays for their own heat so it's cold and who doesn't and it's hot. It was a mixed bag today. One new mother, (who pays for her heat and ran out of oil yesterday) had a cold house, but had a space heater that had the bedroom heat up to about 80 degrees. I kept peeling off layers until I was ready to pluck off my fleece hat, baldness not withstanding.
I made 4 visits and saw 5 clients today. I was tired but not more than usual. I feel a bit the fraud as everyone offers to help me. I don't feel sick and am firmly entrenched in the denial stage. As Allison reminded me, I wasn't supposed to have this week. I was supposed to have chemotherapy last Monday.
Speaking of chemotherapy, I called my doctor at Fox Chase this afternoon. The nurse that called me back, said that Dr. Aggarwal was sorry but she didn't have the results of my biopsy yet. She had called three times, but it wasn't done. She told me to go to chemotherapy on Monday and she would call me with the results. So I still don't know what will happen next week. Oh well, at least this lady tries.

Thursday, January 15, 2009

Ready for the cold snap.


Many thanks to all my 40 and 50 year old friends who offered to haul wood for me. To save your backs and hearts, I awarded the contract to twenty-somethings, Leslie and Michael. who did a bang-up job in no time flat. Security is having a pile of wood in the house and a clear driveway.
I saw 3 clients today. They are all concerned about my welfare and offer all sorts of encouragement and belief in miracles. They urge me to take care of myself and offer me help if I need it. It is very sweet.
I started taking yoga at the hospital. It is primarily for cancer patients and staff. I was delighted when I arrived and found the teacher to be someone I took yoga classes from years ago. I t was relaxing hearing her calm voice again. The classes are every Thursday at 5:30 if anyone wants to join me. They are only 10.00 a class. I have been doing yoga on a fairly regular basis in the mornings using the podcast 20 minute yoga downloads. info@20minuteyoga.com. 20 minutes I can do.
I'm looking forward to Allie coming home this weekend. I've been enjoying hearing from so many people.

Wednesday, January 14, 2009

Fox Chase Rocks


I was a little anxious about this whole thing, so I'm relieved that it went so well. Now I'm just nervous about the pathology report.
Fox Chase ran a tight ship, the staff was pleasant and gave me plenty of sedation. (Gotta love Versed). The staff was having french toast for breakfast and it smelled so good to poor fasting me. My nurse promised me some after the biopsy if my lung x-ray didn't show a puncture. It was really yummy.
The nurses were really surprised by all the dressings I had on my neck and chest from the port placement. When they put ports in at Fox Chase, they just glue them shut, tell them not to shower for 2 days and that's it. My doctors at Reading, told to redress them every time I took a shower for 2 weeks!
The biopsy site is a little sore when I draw a deep breath, but they didn't even put a bandaid on it! I'll work tomorrow and Friday, then I'll get a little break and hopefully start chemo on Monday.

Biopsy Done!

Just a quick update.  The Biopsy is complete and her lung did not collapse (there was a 25% chance it would).  The doctor said the tumor looked significantly smaller then it was in her scans so that means the nasty chemo has been working, which is good.  She is home now, and is having more discomfort from the port then the biopsy. 

Tuesday, January 13, 2009

Off to Fox Chase tomorrow


I'm feeling a little nervous tonight about the lung biopsy tomorrow. Heaven knows I'm used to procedures and tests . (3 CT scans, 1 MRI, 1 Bone scan, 1 PET scan, 1 liver biopsy 1 port insertion and 3 days on chemotherapy) I don't know if it's because of the drive (one and a half hours) or because it is so important. I'm worried a little that my lung could collapse and I would have to stay in the hospital down there. I worried the pathologist won't agree to get the results before Monday,or that the results will be ambiguous. I guess I'm most worried that something is going to happen that I haven't anticipated.
The Partnership (my employer) sent a cheerful arrangement of flowers. Flowers and presents are definitely the upside of having cancer.
I worked today and saw three clients, which takes my mind off my concerns. They're all very sweet and worried that I have cancer. One of them is losing her job because the Arby's at the mall is closing. The economy must be bad.
Marty went to the the orthopedist, who thinks his arm is ok and sent him to Physical Therapy for a month. It is going to be really cold the next few days. We could use some help getting some wood hauled in on Thursday or Friday until Allie gets here. I decided I like the tree up, so I'll wait until Allie comes to take it down.

Monday, January 12, 2009

A nice surprise


My Old Songs/Philly Folk Fest camping buddy, Bob, brought dinner tonight. He makes the Berks County's (if not the world's) best bread and taught me how to make no-knead bread. He also brought a pot of minestrone: the kind one can eat for lunch everyday for a week and never get tired of it.
Got my letters for clients ready today. Will mail tomorrow. I saw 2 clients today who thought Wendy was a new haircut. While I was in the office, I took a break from Wendy when Barb brought me a new cap she had knitted from "chincilla" yarn. Wendy didn't stand a chance against my new soft little cap.
I called the Oncology Practice and asked to change doctors. I guess it will get changed after I start chemo next week. One more day until the lung biopsy. I anticipate being glad when it is over and the results are back. But who knows, this stuff never turns out how I anticipate.

Sunday, January 11, 2009

Back to work tomorrow

The snow didn't amount to much. We had a guy come and plow it out today, then I put down some salt substitute. I have to leave early tomorrow to pick up a client for an appointment, so I am glad the drive way is clear. I just hope there is no precipitation before Wednesday when we go to Fox Chase.
I had a lot more energy today. I took tylenol this morning, so no other pain medicine. Marty went to the Farm Show with Nora, Jason and Kyle, but I opted to stay home and get ready for the week. It just seemed like too much.
I'm a little nervous about going to work without hair for the first time tomorrow. I guess I'll wear the wig, whose style is Wendy, by the way. I also will have a big bandage on my neck. I'm very excited about being able to take a shower tonight.

Saturday, January 10, 2009

Hope to be snowed in


I couldn't quite bring myself to do full frontal baldness. Marty says the bow looks even more ridiculous. At least you can tell I'm a girl.
My port incisions really hurt. They didn't tell me it would, but I don't think anything is wrong. There is no swelling or bleeding. I took one of Marty's percosets that he got for his shoulder because tylenol wasn't helping.

Friday, January 9, 2009


FYI: If you tried to comment before without success, please try again. Caitlin and Allison have fixed the problem.
Marty update: His arm is in a sling but seems ok. We could use help getting our Chrstmas tree down.
Today got an early start when Marty and I headed off to the hospital at 6:20 AM. It was all the standard stuff. Who are you, what is your birthday, why are you here, any allergies, take off your clothes, put on a gown, let me start your IV,etc. The doctor was held up and I had to wait awhile in the operating room which was boring and annoying. The doctor finally arrived, apologetic. I told him to take a deep breath and take his time. They gave me what they called conscious sedation, but in my case there was nothing conscious about it. I woke up when they were finishing up without any grogginess.
It was actually a little more involved than I thought. I have a big dressing on my neck where they threaded the IV through and another on the chest where they put the port in. They both hurt and they both have to stay covered for 14 days. I can't swim for 14 days. I can shower after 3 days, but I have to change the dressing every time I shower.
After the procedure, I went down to the Image Center where I got my wig and had them shave my head. I was only going to get the Yoga schedule, but decided to take the plunge, because my half bald head was kind of depressing. If I get up the nerve, I'll post a baldie picture tomorrow.
My friend, Kathy, stopped over to visit this afternoon. I put on the wig before she came and when she opened the door she complimented me on my new hair cut. (I don't think she was faking) So I was glad that her first words weren't "I see you got a wig!" I also bought some scarfy things that wrap around. I am hoping Caitlin can cut a pattern from them and I can make some more.
We are supposed to have snow tomorrow and I am hoping for a relaxing snow day.

Thursday, January 8, 2009

The comb over.


I have a comb-over, at least until tomorrow. Amy gave me the scarf for Christmas. It is a loose weave and wraps around my head nicely.

I'm trying to get back in sync with work. I made two visits today: a little guy who turns two at the end of the month and new baby born on Christmas. Work is distracting in a positive way. When I am making my visits, I am thinking about them not me. I just need to get my letter telling that I have cancer and what that means out to them. They are all asking about my Christmas and I don't want to get sidetracked on what a jolly time I had getting chemotherapy.
I had my writing class today and wrote some poetry. I swam 32 laps and lost a bunch of hair in the shower at the gym.
Well I am done eating for the night and it's off to bed for me. I report at 6:45 to have my port put in.

Wednesday, January 7, 2009

New hair cut before it's gone



The pile of hair grows daily, but I still have enough to get by. Here sort of a picture of my new haircut before it all falls out.
We had an freezing rain this morning, and I couldn't go to work. I felt pretty strongly about getting some salt down on the driveway. Marty fell on the ice with the salt spreader and dislocated his shoulder. I got the driveway clear enough to take him to the emergency to pop it back in. He has to make an appointment with the orthopod but I don't think any thing else is wrong.
Fortunately, my friend Judi, had already planned to come for the evening, so when we got home at 7:30 a wonderful Greek Feast awaited us: Avelemono (sic) soup, Greek Salad, kibbe. The emergency room is always so annoying, so it was so nice having not only a meal, but a gourmet one waiting for us.

Tuesday, January 6, 2009

There goes the hair


Yesterday in the shower, I noticed that I was getting little hunks of hair in my hand. It took until the third one until I realized that it was the beginning of my hair falling out. I didn't wash it today and put on a lot of hair spray.
I went to the Image Center and the nice lady helped me pick a wig. Insurance pays for it so I got a good one that I can wear when I don't want to scare people. It's short and reddish. When Caitlin or Allison come home, we will go to the wig shop on Penn street and buy something fun. The purple wig is actually from Halloween, but if one is going to go bald it might as well be fun.
I went for the consult for the port today. This is my second trip to Interventional Radiology.(liver biopsy was first) It is a nice office. Port goes in Friday at 6:45.am

Monday, January 5, 2009

Oh the Drama!

I decided that Fox Chase was the way to go for the lung biopsy. I guess it should be a no brainer. If RHMC screwed up the first time, why would I go back? I confirmed everything with Fox Chase, then Reading oncologist office called at lunch time. Apparently, they had swung into action this morning, and the nurse told me she got permission to do both the biopsy and the port insertion on Friday. So I'm thinking that maybe I should. It would be five days sooner and only one anesthesia. She told me she'll call me with the time.
Now what to do? I call Fox Chase to ask that doctor's advice. While I'm waiting for call back, Reading calls and says they really can't do it Friday, I have to go back and do it as a separate procedure on Monday. Call Fox Chase say, "Never mind". So the net outcome was exactly the same as what I had decided on this morning. Only with all the thrills of a roller coaster ride.
So I'll go to Fox Chase 1/14 for the lung biopsy. I'll soon win the patient pain in the butt award.
It was good to back to work. My new little baby was cranky about breastfeeding. I swam 20 laps after work to relax.
My Pollyanna gift from the office Christmas party was waiting for me. I had to leave the party early for an MRI so I assigned my co-worker the task of getting me a good gift. They are all wrapped so you never know what you are getting. I have the reputation of always getting weird, ugly or ridculous gifts. This year,s took the cake. I unwrapped it. It was the book "1000 places to visit before you die"! Gave me a bit of a start.

Sunday, January 4, 2009

Back to work tomorrow

I go back to work tomorrow. I am looking forward to it. Going to work and having a normal schedule will dovetail quite nicely with my new attitude: pretending I don't have cancer. I have a new baby to visit tomorrow, all my clients to schedule and a letter to write informing them of my illness.
I have an appointment with anesthesia Tuesday and I'm having a port put in on Friday.The port goes in under my skin near the collarbone. They use it to put in the chemo and take out blood to save the veins. Sounds like a handy thing to have

How am I today?

Well I am back to denial and feel great. I feel like myself. Absolutely nothing feels wrong with me. I've given up on my quest for an earlier lung biopsy. I'm just going to go with the flow for the moment. I do, however, think I need to have a chat with the oncologist.
I taught my Dad how to process his pictures on the computer. My mom helped me mop floors. My niece, Sarah, and her husband, Jesse, came over and moved our wood pile closer to the house. Bless their hearts. Amazingly, my 83 year old Dad took the axe and split 5 or 6 logs!
Marty and I went Contra dancing at Elverson tonight. So it was a sweet day. I just kept the aggravations out of my head.

Saturday, January 3, 2009

Black Black Friday

Today was as bad as yesterday was good. I called all around trying to figure out a way to get this lung biopsy asap so I don't have delay chemotherapy. No one can schedule it before the 12th, the day I'm supposed to start the second round of chemotherapy. They ask me how I am. I say, "Depressed and feeling sorry for my self." Well they did ask, right?
I put in a call to the oncologist to find out how this new lack of definitive pathology would affect my treatment. She took her sweet time and called me back after lunch. I asked if delaying the treatment would affect effectiveness. She said she prefers to stay on schedule, but she has to have the correct pathology to use the right chemo. Things got bad when she said, "So your chemo will be pushed back to the 19th." I had a little meltdown when I realized that is only 2 days before Nora's c-section.
It just seemed so unfair. First they tell me I don't have a lot of time left, then they suck every bit of joy out of what's left. I started to cry and said that's the week that my stepdaughter's having her baby. I was supposed to be done with the chemo not starting it. She felt bad I guess and said she would see what she could do.
I gave up waiting and went swimming. The whole day was water. Tears and pool water. Swimming felt normal and relaxing. I swam 35 laps and felt great. When I got out of the pool, there was a message from the doctor's office nurse. She said:
"I called cat scan. They don't have a earlier appointment. Yours is the next available."
Excuse me, but that is NOT trying. The damn doctor didn't even call cat scan herself or me.
I felt so betrayed. I expected her to call CAT scan and say. "The hospital pathologists screwed up a pathology report and I have a really sick, angry patient. I need a lung biopsy Monday. I need you to make that happen". Silly me.
I have been trying to figure out why I react so strongly to this woman. I think there are two things:
1. I haven't had a new health care provider for 18 years. I've had the same dentist for 30 years, midwives for 25, my family doctor is the new guy, at 18 years, but he gets points for his wife being my friend. So I am used to health care providers who personally care about me and would do anything I needed to receive optimal health care. I can't trust this lady like that. I don't feel like she's got my back.
2. I have 25 clients and a family that I am used to advocating for. If my clients need something, we find a way to get it. I call people, badger agencies, and teach them little by little to do it for themselves and their babies. I don't call them and say, "Oh I called and the clinic is booked for birth control appointments." I call the person I know at the clinic and say that this girl needs to come in now before she becomes pregnant again. How can we make that happen? Even if I couldn't make it happen, I wouldn't call and say "They said no". I would tell her everything I did to try.
I just felt abandoned. Where is my advocate? My sister did call and and talked to the office staff. IT didn't produce anything different, but at least I felt like I had someone on my side.
The day at least ended nicely with dinner and a game of 5 crowns with my parents. My mom went with me to sing at Ted's house for a while. There's nothing like loud singing to put you back in balance.

Thursday, January 1, 2009

Happy New Year!

Today has felt like a good omen for 2009. I felt absolutely 100% myself. My parents arrived for the weekend and I ate enough pork and sauerkraut to gain back any weight that I lost the last week and a half.
When I was in college, I took a course called the Philosophy of Death. We studied Elizabeth Kubler-Ross and the 5 stages of grief: Denial, Anger, Bargaining, Depression, Acceptance. I find myself cycling through them in no particular order every day. Feeling good today has firmly rooted me back in denial. There is no way I can be that sick and feel this good. Maybe one chemo cured me. (just kidding)
Tomorrow I'll have to go be my own health advocate to get this lung biopsy scheduled and a result before my next chemo is due. Maybe I'll get my car inspected too. That should be easier to schedule. Then I think I will swim and sing and decide if I like my new hair cut.