Thursday, December 16, 2010

16 December 2010

Saw Dr R again today and we went over the CT Scan as he now had it on his computer so I could see the results-----it would be nice if he could bring up past ones at the same time so that I could see the comparison that they are talking about.

Then we discussed what I was going to do and I told him that at this point I was still willing to “fight” the Cancer so Chemo it was to be. However I wanted to wait till after the first of the year and my granddaughter’s 18th birthday (I like the cake yummy) so that I could enjoy the holidays. My taste buds have returned and I would like to enjoy Christmas dinner.

The good news is now that I’m off steroids and chemo for the last 6 weeks I’ve lost about 10 pounds. the birthday cake will put the 10 pounds back on


07 December 2010

Saw my regular oncologist today and we went over the results of the last visit that I had at NIH/NCI and that fact that the tumours’ have grown again and are now outside the boundaries for the protocol for the study that I was in. He gave a list of several options as to what to do next and I’m to think about them and return in a week or so and let him know what I’ve decided.

1) Another chemo drug (gave me a list of three) and the usual side effects

2) Anti hormone therapy ---this one could take longer to see any results from if at all

3) The least favourite one of family and friends is the DO NOTHING approach.

Friday, December 3, 2010

28 Novemeber 2010 thru 02 December 2010 Restaging

We got to the Portland Airport and requested a wheel chair for me, as usual. The fellow showed up and we were thru security without an incident---not even the Keep-Her got to have a pat down. It was smooth sailing all the way.

We get to the “gate” and Amber goes off to buy my water for the trip. When she gets back she goes and tells the gate attendant that I need wheelchair assistance to the plane, as well as the isle chair, which they ordered. Also got our seat assignments.

It was time to board the plane and all of a sudden it’s there’s a DOG!!! No one said anything about a DOG!! There’s nothing in the computer about a DOG!! So the gate attendant gets busy with her computer ---last thing I knew was that our assigned seats were in row 23. They had ushered Amber ahead with Keep-Her as they have to back me down the isle in the funky little chair---Keep-Her was NOT happy about not being with me, but the flight attendant side tracted her with petting. I get down towards where our seats were and Amber is about 5 rows up from where we supposed to be---turns out we got the whole row to ourselves so Keep-Her didn’t have to share space with anyones feet.

had a very nice smooth flight out to Washington DC Dulles airport.

Monday I went to NIH/NCI and had my Apheresis done, then went and had my CT scan done-had to wait three hours to go to Clinic.

That’s where I got the results of my lab test and my CT scan.

NOT GOOD NEWS----the tumors have continued to grow. I am now OVER the 20% minumum new growth that’s allowed on any study protocal. So basically in a nut shell I’ve been removed from the study. I’ll still have to come back here for follow- up as is required by the study protocal. They will also keep me in mind for any other study that may come up that I may qualify for.

So now I’ll go home to my regular Oncologist and try yet another Chemotherapy type drug.

We were then given the option of flying home early to staying on till my scheduled time to fly home. We opted to stay and play for two days.

So yesterday my friend here in Bethesda took us to see the National Catherdal

Then we went to Arlington National Cemetary and walked up to JFK’s grave site and then up to the Arlington house.

Then my friend took us to the Capitol building and let us off there. She had appointments to get to. We really appreciated the tour she gave us and the hospitality she has shown me and my various care-givers.

This is Capital from there we walked down to the

Washington Monument quite a long walk. (according to google about a 4 mile walk round trip up to Union Station)

On the way back just before we got to the capital building, Amber points out a couple of policemen standing on the corners of the street. They seem to be multiplying, one I notice (closer of the two) is in a full day glow green jacket and the other one (about a block away) is just in a day glow green vest….. the front wheel of my walker got caught in a large crack in the sidewalk and I went a tumbling down. Crash, bang screech……just as I get Amber, Keep-Her and the walker all lined up where I needed them to be to help me up---Amber hears someone call out to wait a minute. It was the police officer who was furthest away coming to my aid. He helped me up and kept asking if I needed to be “checked out”? are you sure there is nothing broken? I turn to thank him and he’s carrying an assault rifle (little closer than I’ve really ever wanted to be to one) I thanked him for helping me up and asked for directions to Union Station.—we were almost there only a few more blocks to go.

Then back up to the Capitol building and pass to Union Station to catch the metro red-line back to the Medical Center to catch the shuttle back to the hotel. We got back to the hotel and I discovered that I had a small abrasion on my right knee and my right elbow. So we went and took a nice long relaxing dip in the hotel hot tub.

Woke up this morning and my body had other ideas about whether or not it wanted to be in an upright position or not. So we opted to just hang out in the hotel today and rest up for our trip home tomorrow Thursday 02 December 2010. That’s been our fun and exciting time this trip.

Saturday, November 27, 2010

28 November 2010 Time to sing the John Denver song again

I'm leavin' on a Jet Plane..................oooooooooooooooh yes yet again.----gives a whole new meaning to "That time of the month" :-p Keep-Her, my niece Amber who is my everyday caregiver and I are off to NIH at Bethesda MD again for another round of testing and further treatment. We are hoping for a smooth flight and no hassles with security any where.

Amber and I are both feeling much better. Although I still have a nagging hanging on cough from my bronchitis, but it is much better than it was.

Thursday, November 18, 2010

14 Novemeber 2010 Cycle Five -- minor set back

Due to illness (mine and my care giver’s) we are not flying back to NIH/NCI this week for treatment. Since next week if Thanksgiving holiday week, we are now scheduled to fly back on 28 November 2010.

Both of us are feeling much better. I just have the nagging cough that hangs on after a bout of Bronchitis. Hopefully that will also leave soon.

Thursday, November 11, 2010

Thursday 11 November 2010 Cycle Five Treatment None--OFF Week

Thank all those who have served and continue to serve.

Well this is my OFF week and unfortunately so will next week be. I must have had a premonition at my last visit to NIH/NCI as I asked them how do I handle illness if it should coincide with a trip back there----- I have come down with the “crud”. Just as I was getting over my Bronchitis, my darling husband brought me a lovely gift-----the “FLU” or Norovirus ----trust me whichever it was, was NOT nice. It has a very very short incubation period of about 36-48 hours and then you get both ends going at the same time with a vengeance. My Granddaughter was so kind as to come over on the weekend and care for me when I was so ill, as Amber was out of town. I could hardly walk, I had to resort to the Wheelchair to get around in my house I was so weak. She went home on Sunday and by Monday evening the poor child was sick. Amber came home from her Softball World Series Tournament (they came in 5th out of a field of 37) and by Wednesday morning she’s down with the flu also. She wasn’t even here for the worst of mine----but it’s in the house obviously. So I called NIH/NCI and told them what was going on here----they said not to come out next week. They’ll call and reschedule me for another time. So I’ve been trying to get all my reservations for next week cancelled and follow up appointments cancelled as I don’t know when I’ll be receiving my next treatment.

That should bring you all up to date for this week...sigh....Hope none of you get this lovely thing.

My quote of the week is: I used to eat a lot of natural foods until I learned that most people die of natural causes.

Wednesday, November 3, 2010

Wednesday 03 November 2010 Cycle Five Treatment Three

Since Amber is out of town at her ball teams World Series Tournament in Sunny Las Vegas, Mack was my driver for today.

It was a short and sweet appointment. Got me in there BEFORE it was my scheduled time, took one nurse one try to get the IV started, Chemo came up in a timely manner. Was hooked up infused, flushed and out of there in a little over an hours time......UNHEARD of!!!!!

this is a picture of Mack's little dog. He came with the Name Brewster, but Mack hasn't decided what to call him yet. Shadow, Sparky, Buddy are a few of his choices so far. He's a Rat Terrier mix

Friday, October 29, 2010

Wednesday 27 October 2010 Cycle Five Treatment Two

One of my pet peeves with people who blog is not keeping them updated on a regular who is calling the kettle black here.... Well my excuse is I’ve been SICK!!!!

No! I wasn’t sick from the Cancer treatments----well maybe that was part of it, as my immune system is weakened from all the chemo. I came down with a VERY bad case of the cold/flu that turned into Bronchitis. Amber and I spent 10 hours in the ER on Monday night, while they tried to decide whether or not to admit me to the hospital and ran one test after another on me. What a fun place to spend an night NOT!!!! In the end they sent me home with antibiotics and an inhaler to use to help me breathe. Within 24 hours of antibiotics I was (as one friend put it) 1000% better.

Now to get rid of the nagging cough that hangs around forever and ever.
Wednesday, I saw my Oncologist and he said it was ok to go ahead with the Chemo treatment this week. I’ve had the same “normal” to me type of reaction this week as I’ve been having all along.....wide awake for 36-48 hours after steroids and treatment, then I sleep for the next 36-48 hours pretty much----Good thing that’s the time that the University of Oregon Ducks play----the WIN if I sleep


Thursday, October 21, 2010

17 - 20m October 2010 Cycle Five Treatment One

Went back to NIH at Bethesda MD for another treatment. Things are progressing slowly. No real news to report this time around. Had a slight reaction to the vaccine this trip (small nickle size rash, intense itching for two days)----was told that was "good news" means it's working-----OK if you say so.

Update on the Netbook---they had it back to me, repaired, the same week that we shipped it out for them to work on. Now to put all the information BACK onto it. sigh..... As I told my granddaughter it's like getting a new cell phone (which she just did) need to reprogram it all over again.

Wednesday, October 6, 2010

05 October 2010 Cycle Four Treatment Three

Had my chemo treatment and so far everything is going well. No major side effect just tired when I come down off my steroid high. Took one nurse one try to get in today. Had a yucky tingly taste and tingly tounge in my mouth about 5 min after Chemo started. This lasted all thru the infusion and for about hours after wards.

Netbook up date----shipped it off to the factory to be repaired. we'll see how long it takes that to happen.

Wednesday, September 29, 2010

28 September 2010 Cycle Four Treatment Two

Saw Dr R today (my Oncologist for the last 20+ years) for the first time in ages I actually now have two that I see here in town, and the three (so far) I see back East at NIH.

Had my chemo treatment and so far everything is going well. No major side effect just tired when I come down off my steroid high. Took one nurse one try to get in today. Had a yucky tingly taste in my mouth about 5 min after Chemo started. This lasted all thru the infusion and for about 20 min after wards.

I’m heartbroken my little Netbook Died on me last trip back east. I’m having troubles getting an English speaking non accented person on the phone to help me with it. Will try again in a little bit.