Since I have heard from several readers that I better update my blog after my MD visit...here goes!
If you hear a whistle blowing....it would be blowing three long times...the official "ALL CLEAR" sound!
The CT scan showed I'm still clean as a whistle! She said, "look how short the report is!" It was half a page, instead of my initial, multiple page report last November!
I still have to go back for check-ups, once every three months for CT scan and then MD exam. I'm scheduled for the first follow-up on Sept 1st.
No more blood work! YAY!!! I just get the CA125 done the same time I go for the CT scan...that's okie doke with me.
AND....I can see the doctor in Norwich now in their new sattelite office on Sachem Street, no more having to go to New London or Providence! YAY YAY YAY!!!
I do have a hernia, just as I thought. I'm going to have Dr. Valin, my gastric by-pass surgeon handle that for me and maybe I get a little tummy tuck at the same time. I'm also going to see if Dr. Valin can do my colonoscopy. I'm overdue and it's going to be more complicated now, since the two surgeries, the bowel resection and the parts of the rectum removed and all the adhesions from scar tissue. I trust Dr. Valin, so f he can do it...all the better. AND, I will combine that with a trip to IKEA!
But first comes July and then Sweden! After that we'll think of hernia repair, etc.
Right now I'm going to focus on getting my blood levels (white and red cell counts) up and then walking, exercising and working out to get in shape for Sweden.
I am so happy and relieved. Sandy is happy and relieved. We are ALL happy and relieved.
Now I'm going to have dinner and then watch the Sox and later the Celts go for the championship---this reference is for Cindy, who complains about my writing about sports in this blog!
I have fulfilled my obligation to provide information....
Nighty night!
GO CELTS!!!
Thursday, June 17, 2010
Thursday, June 10, 2010
Today is the 37th anniversary of my mother's death. I went for my CT scan this morning and felt my mother right there along side of me. She's been helping me a lot through this whole thing. It was only fitting that I go for my last definitive test today on this anniversary.
Thirty seven plus years ago they didn't have chemo...just chemo in it's experimental stages and my mother took part in those experiments. I can't remember the name of the chemo she got--she got a shot at her doctor's office at certain intervals. I wish I knew what it was she got. It did help her to live longer than they thought she would...she lived 10 years after her initial diagnosis. The last two and a half years she was on "her time"...the doctors thought she would be dead by then. I can remember her asking Dr. Margolick how much time he thought she had left and he said, "what can I tell you Marion, by all rights you should have been dead two years ago!" She lived another two and a half years after that.
My mother was a strong woman in many respects--a lot stronger than me. She was an emotional person--she felt emotions in a big way. But she never complained of pain, never asked "why me?" never felt sorry for herself. I
I have tried to do the same. I can honestly say I have never had the "why me?" thought. I know that I'm no better or deserving of anything than anyone else. I haven't even asked "why?" I know shit happens...and it happens to everyone!
And to tell the truth, this isn't the worst thing I've been through. Having my child taken from me by her mother was far worse. Losing Jasmine and never finding her was much worse. Losing my mother was the worst.
This journey has been full of bad things and good things and the good things outweigh the bad by far.
I have met some wonderful new people, Marcia, Brandy, Tammy, Jason LaChance, Dr. Di and Dr. McCourt. The Anne-Maries---Big and Little.
I have been supported by my friends and family in a way that I never envisioned was possible. Jean, Lynne, Dorothy, Carol and Mary Anne. All the folks who email me and send me cards and call me and make me laugh.
The pain has been brief and manageable. The discomfort is fleeting. It isn't as bad as I thought it was.
I hope that I am done with cancer. I hope, of course, that it never, ever comes back. I will be on the lookout for symptoms, but I'm not going to be paranoid about it. I will be diligent about getting my follow-up CT scans done and keeping my follow up appts with the doctor.
If it does come back, we know what we have to do and we will do it. It's that simple. My mother used to say "you do what you have to do." She was right about that and about just about everything else she told me. She was a very wise woman.
I look forward to getting on with life. I'm not stupid though, I know that it could come back.
If it does, I'll be prepared. In the meantime, I'm feeling my mother, pushing me to get things back on the track again and get my butt moving!
I miss you Mummy. After all these years, I still do.
Nighty night!
Thirty seven plus years ago they didn't have chemo...just chemo in it's experimental stages and my mother took part in those experiments. I can't remember the name of the chemo she got--she got a shot at her doctor's office at certain intervals. I wish I knew what it was she got. It did help her to live longer than they thought she would...she lived 10 years after her initial diagnosis. The last two and a half years she was on "her time"...the doctors thought she would be dead by then. I can remember her asking Dr. Margolick how much time he thought she had left and he said, "what can I tell you Marion, by all rights you should have been dead two years ago!" She lived another two and a half years after that.
My mother was a strong woman in many respects--a lot stronger than me. She was an emotional person--she felt emotions in a big way. But she never complained of pain, never asked "why me?" never felt sorry for herself. I
I have tried to do the same. I can honestly say I have never had the "why me?" thought. I know that I'm no better or deserving of anything than anyone else. I haven't even asked "why?" I know shit happens...and it happens to everyone!
And to tell the truth, this isn't the worst thing I've been through. Having my child taken from me by her mother was far worse. Losing Jasmine and never finding her was much worse. Losing my mother was the worst.
This journey has been full of bad things and good things and the good things outweigh the bad by far.
I have met some wonderful new people, Marcia, Brandy, Tammy, Jason LaChance, Dr. Di and Dr. McCourt. The Anne-Maries---Big and Little.
I have been supported by my friends and family in a way that I never envisioned was possible. Jean, Lynne, Dorothy, Carol and Mary Anne. All the folks who email me and send me cards and call me and make me laugh.
The pain has been brief and manageable. The discomfort is fleeting. It isn't as bad as I thought it was.
I hope that I am done with cancer. I hope, of course, that it never, ever comes back. I will be on the lookout for symptoms, but I'm not going to be paranoid about it. I will be diligent about getting my follow-up CT scans done and keeping my follow up appts with the doctor.
If it does come back, we know what we have to do and we will do it. It's that simple. My mother used to say "you do what you have to do." She was right about that and about just about everything else she told me. She was a very wise woman.
I look forward to getting on with life. I'm not stupid though, I know that it could come back.
If it does, I'll be prepared. In the meantime, I'm feeling my mother, pushing me to get things back on the track again and get my butt moving!
I miss you Mummy. After all these years, I still do.
Nighty night!
Tuesday, June 8, 2010
Not much to post, but I don't want to get in trouble with the Peanut Gallery!
One big thing, I hit my goal of raising $1,000 for the Relay For Life today....thanks to Facebook! I posted it on there and my buddies responded, pushing me past the $1000 mark.
In years past I've had no problem raising far more than that...one year I think it was almost $3000! However, the recession has hit people hard and they can't give like they used to...I understand.
Been doing a lot of reading on my Kindle. Finished the Denise Mina books...excellent! I have one more of hers to read. Now I'm reading "The Girl with the Dragon Tattoo" by Stieg Larsson. I think I'll be reading all of his books too!
I have been quiet the past two days. Feeling a bit woozy and tired. Part of the process of letting the chemo move through my system. Soon this will pass and I can really get moving.
Lynne came by yesterday to visit and return the power washer...now David wants to buy one for himself. That is a project for me sometime this month...power wash the house. We sat out on the deck and chatted and watched the birds.
The orioles have been cleaning out the oranges every day. They come right up on the deck and it's pretty neat to watch them. No sign of any life in the martin house yet.
Sox have been doing great lately and I've been watching just about every game. Celts seem to be determined to win it all...sounds like a good plan to me!
Well, Sandy is back from grocery shopping. I did my chore...I cut coupons and made up the shopping list. Not allowed into the store to do the actually shopping! Not yet anyway.
Tomorrow I'll get my bloodwork done, go to the post office and then to the Pachaug Aquarium to get fish food. Maybe sneak over to Lazizah or Bill's Barbecue...hmmmmm, which shall it be?
Anyway, Sandy is back from shopping so I'll shut the Sox off (leading 3-2) and we'll watch last night's episode of Real Housewives of New Jersey. That Teresa is such a card! And Danielle is so EVIL!
Kathy Griffin has a new comedy concert on at 10 pm....all set to be recorded. Her show starts up again next Monday and her mother has a book coming out at the end of the month...a must read called "Tip It!" What else would it be called? HA!
Nighty night!
One big thing, I hit my goal of raising $1,000 for the Relay For Life today....thanks to Facebook! I posted it on there and my buddies responded, pushing me past the $1000 mark.
In years past I've had no problem raising far more than that...one year I think it was almost $3000! However, the recession has hit people hard and they can't give like they used to...I understand.
Been doing a lot of reading on my Kindle. Finished the Denise Mina books...excellent! I have one more of hers to read. Now I'm reading "The Girl with the Dragon Tattoo" by Stieg Larsson. I think I'll be reading all of his books too!
I have been quiet the past two days. Feeling a bit woozy and tired. Part of the process of letting the chemo move through my system. Soon this will pass and I can really get moving.
Lynne came by yesterday to visit and return the power washer...now David wants to buy one for himself. That is a project for me sometime this month...power wash the house. We sat out on the deck and chatted and watched the birds.
The orioles have been cleaning out the oranges every day. They come right up on the deck and it's pretty neat to watch them. No sign of any life in the martin house yet.
Sox have been doing great lately and I've been watching just about every game. Celts seem to be determined to win it all...sounds like a good plan to me!
Well, Sandy is back from grocery shopping. I did my chore...I cut coupons and made up the shopping list. Not allowed into the store to do the actually shopping! Not yet anyway.
Tomorrow I'll get my bloodwork done, go to the post office and then to the Pachaug Aquarium to get fish food. Maybe sneak over to Lazizah or Bill's Barbecue...hmmmmm, which shall it be?
Anyway, Sandy is back from shopping so I'll shut the Sox off (leading 3-2) and we'll watch last night's episode of Real Housewives of New Jersey. That Teresa is such a card! And Danielle is so EVIL!
Kathy Griffin has a new comedy concert on at 10 pm....all set to be recorded. Her show starts up again next Monday and her mother has a book coming out at the end of the month...a must read called "Tip It!" What else would it be called? HA!
Nighty night!
Sunday, June 6, 2010
I'm happy to report that I'm bouncing back faster this time around. I think it's because I had six weeks off from chemo. I have more energy already, was able to clean the whole house, including vacuuming and washing floors and not collapsing!
Yesterday I cleaned upstairs and then was able to go to Taylor's 18th birthday party last night....and I lasted a long time there.
Today I ran errands at Stop and Shop, Kohl's and WalMart and was able to come home and plant my vegetables and work in the yard. I got tired, but it was a good kind of tired...the kind you get from working and sweating and being busy. I dozed in the chair as I listened to the Sox in extra innings....and it felt good.
Tomorrow I hope to get to the post office to mail the present to Lera and the kids. I've had this package for months it seems. Time to get it in the mail! Lynne is coming over after she gets out of work, to bring back the power washer.
I'm hoping I can run the power washer this week and clean the siding. It's quite green in some parts out front and just off the deck.
I bought some "topsy turvy" planters and put them out on the deck with tomatoes, peppers; chives and other herbs. Taking advantage of all the sun we get out there.
I hope to be able to make fresh salsa from the little patio garden I planted...got some serrano peppers, tomatoes; and cilantro growing out there. It will be so nice to be able to pick the stuff fresh, come in and make salsa and bring it back out to eat on the deck. I'll feel so green...and accomplished!
Sandy planted her garden on Memorial Day and already the corn is coming up! She planted tomatoes, squash and beans too. If all our tomatoes come in, we may have to open a veggie stand up by the mail box, or give it away to neighbors and maybe the group home here in town.
I still have to plant my morning glories...which reminds me, I need to put the seeds in water tonight to get them in the ground tomorrow.
This is the great time of year. I love the fresh veggies, eating outside, enjoying the weather. Even when it rains, it's cool. Love it.
I have two little doggies on my lap right now. Actually Rocky is on my lap and Bub is snuggled on my left arm. They are pooped from being out all day, chasing squirrels and chipmunks and following Sandy around in the yard.
She bought an arborvitae and a spruce tree to plant in the yard. The arborvitae is going to plug the hole created by the loss of the cottonwood we had cut down last week. The spruce is going to go in the back corner where she and her Mother cleared this spring. We may be getting another spruce to plant to block the view from Cliff's house next door, where she and her Mother cleared brush. If all goes well and the trees block the holes, maybe I can sunbathe in the nude out on the deck! YEOW!!! Heh heh...
Jean is still having problems with vertigo. When she went to PT for the exercises that gets rid of the condition she has, her blood pressure went way up...dangerously so. She had to stop and wait for a bit. So now she goes back tomorrow I think. I hope she can do the exercises. I did them a few years ago and it got rid of my vertigo. She feels like she's walking on a rolling deck out at sea. I feel for her, it's no fun.
Busy week ahead. Working in the yard, weeding out back and out front too. Working on the compost. Maybe buying an electic edger so we can edge along the fence and put stone down, so Sandy doesn't have to run the weedwhacker there--it keeps breaking the line and it's frustrating. It's a good project for me.
I go for my CT Scan Thursday...Richard is taking me. Maybe we'll go shopping afterwards, although I usually have to get home fast as the stuff they make you drink goes right through me.
I'm hoping to go kayaking some time this week too. I don't know when, will have to look at weather. I have to stay away from crowds for the next two weeks, so kayaking would be a nice, fairly solitary activity for me.
Hoping Sue comes this week to get her special present. Haven't seen her in years and I don't know why we have drifted apart. Hoping that she comes to visit and we make plans to see each other more often.
So, Life is cranking up again for me and I am SO HAPPY about it!
Nighty night!
Yesterday I cleaned upstairs and then was able to go to Taylor's 18th birthday party last night....and I lasted a long time there.
Today I ran errands at Stop and Shop, Kohl's and WalMart and was able to come home and plant my vegetables and work in the yard. I got tired, but it was a good kind of tired...the kind you get from working and sweating and being busy. I dozed in the chair as I listened to the Sox in extra innings....and it felt good.
Tomorrow I hope to get to the post office to mail the present to Lera and the kids. I've had this package for months it seems. Time to get it in the mail! Lynne is coming over after she gets out of work, to bring back the power washer.
I'm hoping I can run the power washer this week and clean the siding. It's quite green in some parts out front and just off the deck.
I bought some "topsy turvy" planters and put them out on the deck with tomatoes, peppers; chives and other herbs. Taking advantage of all the sun we get out there.
I hope to be able to make fresh salsa from the little patio garden I planted...got some serrano peppers, tomatoes; and cilantro growing out there. It will be so nice to be able to pick the stuff fresh, come in and make salsa and bring it back out to eat on the deck. I'll feel so green...and accomplished!
Sandy planted her garden on Memorial Day and already the corn is coming up! She planted tomatoes, squash and beans too. If all our tomatoes come in, we may have to open a veggie stand up by the mail box, or give it away to neighbors and maybe the group home here in town.
I still have to plant my morning glories...which reminds me, I need to put the seeds in water tonight to get them in the ground tomorrow.
This is the great time of year. I love the fresh veggies, eating outside, enjoying the weather. Even when it rains, it's cool. Love it.
I have two little doggies on my lap right now. Actually Rocky is on my lap and Bub is snuggled on my left arm. They are pooped from being out all day, chasing squirrels and chipmunks and following Sandy around in the yard.
She bought an arborvitae and a spruce tree to plant in the yard. The arborvitae is going to plug the hole created by the loss of the cottonwood we had cut down last week. The spruce is going to go in the back corner where she and her Mother cleared this spring. We may be getting another spruce to plant to block the view from Cliff's house next door, where she and her Mother cleared brush. If all goes well and the trees block the holes, maybe I can sunbathe in the nude out on the deck! YEOW!!! Heh heh...
Jean is still having problems with vertigo. When she went to PT for the exercises that gets rid of the condition she has, her blood pressure went way up...dangerously so. She had to stop and wait for a bit. So now she goes back tomorrow I think. I hope she can do the exercises. I did them a few years ago and it got rid of my vertigo. She feels like she's walking on a rolling deck out at sea. I feel for her, it's no fun.
Busy week ahead. Working in the yard, weeding out back and out front too. Working on the compost. Maybe buying an electic edger so we can edge along the fence and put stone down, so Sandy doesn't have to run the weedwhacker there--it keeps breaking the line and it's frustrating. It's a good project for me.
I go for my CT Scan Thursday...Richard is taking me. Maybe we'll go shopping afterwards, although I usually have to get home fast as the stuff they make you drink goes right through me.
I'm hoping to go kayaking some time this week too. I don't know when, will have to look at weather. I have to stay away from crowds for the next two weeks, so kayaking would be a nice, fairly solitary activity for me.
Hoping Sue comes this week to get her special present. Haven't seen her in years and I don't know why we have drifted apart. Hoping that she comes to visit and we make plans to see each other more often.
So, Life is cranking up again for me and I am SO HAPPY about it!
Nighty night!
Wednesday, June 2, 2010
Chemo Done!
I have been remiss, as Pam has rightfully pointed out to me, by not updating the blog. So...here goes.
The big news is that I finally got to have my last chemo on Friday. I just made the cutoff number for my ANC (Absolute Neutrafil Count) at 1500...on the nose!
Jean and Frank drove me up and dropped me off at the hospital and I joyously got myself admitted and made my way up to Four East...my old home away from home. Marsha wasn't working, but I did run into Janet from another planet in the hall and she wished me well.
The nurse I had was very nice, slight British accent. Right off the bat she told me that "they" had put orders for me to come back on the weekend and get Neulasta. I immediately bridled at THAT notion and asked who ordered it...I couldn't imagine Dr. McCourt ordered it. They couldn't tell from the paperwork who ordered it and I told them I wanted to talk to Dr. McCourt about it.
So, they checked and found out the doctor was off on Friday. Okay, I wanted to discuss it with Sandy. I didn't want to take the Neulasta. Neulasta is a drug that some ocology centers give to all or almost all their patients immediately after getting chemo---it boosts the body's immune system. My doctor's don't like to use it unless they have to...they prefer to have the body recuperate naturally and that's what I'm used to and what I want to do.
Well, the nurse gives me my pre-meds, including giving me the IV benadryl early (which is how I prefer it...that way I'm not so groggy when it's lunch time) and I was on my way.
I was in the bathroom when SHE walked in...peeked into the toilet and said, "Oh I see you are in the toilet, I'll come back." It was HER...the nurse practitioner who was so weird the last time I was in for chemo. I don't like her and was hoping I could avoid having to see her.
This woman doesn't introduce herself, doesn't explain what her function is, just barges in and takes over. Last time she asked me a bunch of stupid questions and made me repeat all the medication information and allergy information I had just given to the nurse! AND, she pulled the curtain on the nurses as they were trying to hook up my IVs and get the chemo started...very rudely, she just pulled the curtain in their face! That was last time.
This time she marches back in after I was back in bed, demanding to know why I didn't want to get the Neulasta. I told her I never had it before, I was trying to avoid EVER getting it and I didn't want it. She told me that my counts were too low and I was at big risk for getting infection. I explained, or tried to explain, that I know about infection, my counts have been way lower than that and I haven't gotten so much as a sniffle. She told me "you could DIE of infection!"
I told her I had the benadryl in me and was feeling very sleepy and couldn't think straight. Actually, I had told her that when I was on the toilet too. So I told her twice that I wasn't mentally sharp to be having this discussion.
She was very insistent that I "had" to get the Neulasta. I told her I was concerned about side effects. She told me that there were no side effects. I told her that's not true...I know that there are side effects.
I told her I didn't want to have to come back there on the weekend, my sister was coming to visit and I didn't want a trip to the hospital to interfere with that. She insisted that I would die of infection. I said, "can't I go to a hospital closer to me? I live in CT." She said, "no, you come to the Emergency Room here."
Finally, she badgered me so much I said, "yeah, whatever" knowing that I could get rid of her that way, but I could do whatever Sandy and I decided to do. I wish I hadn't had the meds in me...I would have raised a ruckus...she wouldn't have known what to do!
So, she parades back into the room with some more paperwork and tells me: "you have two options, you can come Saturday night or you can come Sunday morning." She leaves and I tell the nurse, "actually, I have three options, I can come Saturday night, I can come Sunday morning or I can not come at all!" To which the nurse says, "that's right!" The nurse agreed with my concerns and told me I had the right to refuse to take the med.
When Sandy came up we tried other alternative arrangements, including getting a prescription for the drug and having Sandy do the injection. None of the local drug stores had it in stock. Backus didn't have it in stock either, except for their patients.
The rest of the day/evening passed uneventfully, except for my occasional reaction to the drug that I'm allergic to...but that reaction is very mild now...I get flushed and very hot...for about a minute. I had that at 6:55; 7:55; 8:55 and again at 9:30. We had never noticed before that it comes exactly an hour apart most of the time.
We got out of there after 10 and it was great to leave that floor for what I hope is the last time! We got home at 11:30 and collapsed in bed.
I got up to go to the bathroom in the middle of the night and when I came back to bed, Sandy woke up and asked if I was all right. I told her yes and then told her that I wasn't going to go to any damned hospital and get Neulasta. So there, Rose or Grace or whatever your name is!
Maria came into Mohegan Sun on the bus from Boston late in the afternoon on Saturday. We went to pick her up and walked over to Frank Pepe's pizza in the Winter area of the casino. Sandy got a single tomato pie with mozzarella and Maria and I split a medium tomato pie w/ mozzarella, sausage, pepperoni and spinach. They loved their pizzas, to me it tasted "off", not how great I remembered it tasting at Frank Pepe's in New Haven when Sue and I had gone.
Later I realized that my taste buds were what was "off"...from the chemo. It had been so long I had forgotten about that side effect. It's miserable, the food is so damned good and the taste is so not there. What a disappointment on the holiday weekend, when Maria is here!
Sunday I got up and made a big breakfast for all of us...bacon, hash browns, eggs and toast...a good meal. Of course it tasted funny to me, but good to the others.
Sunday afternoon Maria and I went to the Flea Market that they have every Sunday at the Slater Mill here in town. We wandered around and checked things out. I met a man who asked me if I was a Survivor. When I said "yes" he gave me a handout about a substance the Ojibway Indians had created that fights cancer. He told me he was a Survivor and he used this substance. I have to read the pamphlet more closely. I think you drink it as a tea. He said that it cured him and said "my oncologist is mad at me" for using it. I wonder who his oncologist is.
Roxie came down after she got out of work and we cooked hot dogs, grilled corn on the cob and had salad and other goodies for supper....eating out on the deck. It was so beautiful out there. Then we went indoors, visited with Roxie for awhile and then she had to head home. Too short of a visit for me.
Monday, the holiday, I got up, made corn pancakes for Maria and me and then crashed. I went up to bed, thinking I would lie down for a little bit until I felt better, well, that turned into almost four hours of lying there! I usually crash on Sunday after chemo...I got an extra day of energy (probably because it was so long since I had gotten chemo) and I had my Sunday crash on Monday.
Sandy drove Maria to Providence to get the bus home later in the afternoon. I laid out in the recliner and read my Kindle book. Went to bed early and had no problem falling asleep and staying asleep!
Tuesday I called Ann Marie, my nurse at the Oncology Ctr and left a message for her to call me. She finally was able to call back later in the afternoon. I needed her to set up the CT scan and "wrap-up" appt with Dr. McCourt as I couldn't get into see her at L&M. Then I told her about the nurse wanting me to take the Neulasta. Her first reaction was a strident "WHY?!!" I told her that she said my counts were low. She said, "have you ever taken it before?" And then she said, "your counts aren't THAT low!" I told her that the woman told me that I could die of infection. Actually I told her the whole story and ended with "I'm glad I don't have to see her again." Ann Marie laughed.
So, I made the right decision. I can still trust my gut. Who knows what would have happened it I had taken the drug? Maybe nothing. But now I can say I did it on my own...my counts go down and I bring them back up...on my timetable, without help. I prefer it that way.
Richard is going to take me to my CT scan appt next Thursday. I'm going for my definitive CT scan on the 37th anniversary of the day my mother died. From cancer. I think she'll be helping me out that day. I have no fears.
I go see Dr. McCourt on the 17th to get the CT scan report and see what she says about the chemo and what we do from here. I'm thinking quarterly rechecks (with CT scan) is what she is going to recommend.
It is sure going to feel great to not have to have more chemo, to be able to get stronger and stronger every day and not have to get knocked down again by the chemo. I'm planning on getting outside more and more, doing little chores, pacing myself, building up to bigger things.
Going kayaking, hiking, riding my bike, walking the dogs, running Bub and Lil in agility, taking agility classes, GOING BACK TO WORK!!! WOW....a whole life ahead of me.
I am so lucky. So lucky to have made it through this whole (well...some parts missing); so lucky I have such a strong support group of family, friends, neighbors, co-workers, and even people who I have never met (Carol, the Delaware family; all the people who pray for me in Marie's church; the Methodist church in Putnam; at Ft Jackson) all of whom have been sending me positive messages, vibes, energy.
Thank you all.....
I am so lucky!
Next on the agenda: LIFE!
The big news is that I finally got to have my last chemo on Friday. I just made the cutoff number for my ANC (Absolute Neutrafil Count) at 1500...on the nose!
Jean and Frank drove me up and dropped me off at the hospital and I joyously got myself admitted and made my way up to Four East...my old home away from home. Marsha wasn't working, but I did run into Janet from another planet in the hall and she wished me well.
The nurse I had was very nice, slight British accent. Right off the bat she told me that "they" had put orders for me to come back on the weekend and get Neulasta. I immediately bridled at THAT notion and asked who ordered it...I couldn't imagine Dr. McCourt ordered it. They couldn't tell from the paperwork who ordered it and I told them I wanted to talk to Dr. McCourt about it.
So, they checked and found out the doctor was off on Friday. Okay, I wanted to discuss it with Sandy. I didn't want to take the Neulasta. Neulasta is a drug that some ocology centers give to all or almost all their patients immediately after getting chemo---it boosts the body's immune system. My doctor's don't like to use it unless they have to...they prefer to have the body recuperate naturally and that's what I'm used to and what I want to do.
Well, the nurse gives me my pre-meds, including giving me the IV benadryl early (which is how I prefer it...that way I'm not so groggy when it's lunch time) and I was on my way.
I was in the bathroom when SHE walked in...peeked into the toilet and said, "Oh I see you are in the toilet, I'll come back." It was HER...the nurse practitioner who was so weird the last time I was in for chemo. I don't like her and was hoping I could avoid having to see her.
This woman doesn't introduce herself, doesn't explain what her function is, just barges in and takes over. Last time she asked me a bunch of stupid questions and made me repeat all the medication information and allergy information I had just given to the nurse! AND, she pulled the curtain on the nurses as they were trying to hook up my IVs and get the chemo started...very rudely, she just pulled the curtain in their face! That was last time.
This time she marches back in after I was back in bed, demanding to know why I didn't want to get the Neulasta. I told her I never had it before, I was trying to avoid EVER getting it and I didn't want it. She told me that my counts were too low and I was at big risk for getting infection. I explained, or tried to explain, that I know about infection, my counts have been way lower than that and I haven't gotten so much as a sniffle. She told me "you could DIE of infection!"
I told her I had the benadryl in me and was feeling very sleepy and couldn't think straight. Actually, I had told her that when I was on the toilet too. So I told her twice that I wasn't mentally sharp to be having this discussion.
She was very insistent that I "had" to get the Neulasta. I told her I was concerned about side effects. She told me that there were no side effects. I told her that's not true...I know that there are side effects.
I told her I didn't want to have to come back there on the weekend, my sister was coming to visit and I didn't want a trip to the hospital to interfere with that. She insisted that I would die of infection. I said, "can't I go to a hospital closer to me? I live in CT." She said, "no, you come to the Emergency Room here."
Finally, she badgered me so much I said, "yeah, whatever" knowing that I could get rid of her that way, but I could do whatever Sandy and I decided to do. I wish I hadn't had the meds in me...I would have raised a ruckus...she wouldn't have known what to do!
So, she parades back into the room with some more paperwork and tells me: "you have two options, you can come Saturday night or you can come Sunday morning." She leaves and I tell the nurse, "actually, I have three options, I can come Saturday night, I can come Sunday morning or I can not come at all!" To which the nurse says, "that's right!" The nurse agreed with my concerns and told me I had the right to refuse to take the med.
When Sandy came up we tried other alternative arrangements, including getting a prescription for the drug and having Sandy do the injection. None of the local drug stores had it in stock. Backus didn't have it in stock either, except for their patients.
The rest of the day/evening passed uneventfully, except for my occasional reaction to the drug that I'm allergic to...but that reaction is very mild now...I get flushed and very hot...for about a minute. I had that at 6:55; 7:55; 8:55 and again at 9:30. We had never noticed before that it comes exactly an hour apart most of the time.
We got out of there after 10 and it was great to leave that floor for what I hope is the last time! We got home at 11:30 and collapsed in bed.
I got up to go to the bathroom in the middle of the night and when I came back to bed, Sandy woke up and asked if I was all right. I told her yes and then told her that I wasn't going to go to any damned hospital and get Neulasta. So there, Rose or Grace or whatever your name is!
Maria came into Mohegan Sun on the bus from Boston late in the afternoon on Saturday. We went to pick her up and walked over to Frank Pepe's pizza in the Winter area of the casino. Sandy got a single tomato pie with mozzarella and Maria and I split a medium tomato pie w/ mozzarella, sausage, pepperoni and spinach. They loved their pizzas, to me it tasted "off", not how great I remembered it tasting at Frank Pepe's in New Haven when Sue and I had gone.
Later I realized that my taste buds were what was "off"...from the chemo. It had been so long I had forgotten about that side effect. It's miserable, the food is so damned good and the taste is so not there. What a disappointment on the holiday weekend, when Maria is here!
Sunday I got up and made a big breakfast for all of us...bacon, hash browns, eggs and toast...a good meal. Of course it tasted funny to me, but good to the others.
Sunday afternoon Maria and I went to the Flea Market that they have every Sunday at the Slater Mill here in town. We wandered around and checked things out. I met a man who asked me if I was a Survivor. When I said "yes" he gave me a handout about a substance the Ojibway Indians had created that fights cancer. He told me he was a Survivor and he used this substance. I have to read the pamphlet more closely. I think you drink it as a tea. He said that it cured him and said "my oncologist is mad at me" for using it. I wonder who his oncologist is.
Roxie came down after she got out of work and we cooked hot dogs, grilled corn on the cob and had salad and other goodies for supper....eating out on the deck. It was so beautiful out there. Then we went indoors, visited with Roxie for awhile and then she had to head home. Too short of a visit for me.
Monday, the holiday, I got up, made corn pancakes for Maria and me and then crashed. I went up to bed, thinking I would lie down for a little bit until I felt better, well, that turned into almost four hours of lying there! I usually crash on Sunday after chemo...I got an extra day of energy (probably because it was so long since I had gotten chemo) and I had my Sunday crash on Monday.
Sandy drove Maria to Providence to get the bus home later in the afternoon. I laid out in the recliner and read my Kindle book. Went to bed early and had no problem falling asleep and staying asleep!
Tuesday I called Ann Marie, my nurse at the Oncology Ctr and left a message for her to call me. She finally was able to call back later in the afternoon. I needed her to set up the CT scan and "wrap-up" appt with Dr. McCourt as I couldn't get into see her at L&M. Then I told her about the nurse wanting me to take the Neulasta. Her first reaction was a strident "WHY?!!" I told her that she said my counts were low. She said, "have you ever taken it before?" And then she said, "your counts aren't THAT low!" I told her that the woman told me that I could die of infection. Actually I told her the whole story and ended with "I'm glad I don't have to see her again." Ann Marie laughed.
So, I made the right decision. I can still trust my gut. Who knows what would have happened it I had taken the drug? Maybe nothing. But now I can say I did it on my own...my counts go down and I bring them back up...on my timetable, without help. I prefer it that way.
Richard is going to take me to my CT scan appt next Thursday. I'm going for my definitive CT scan on the 37th anniversary of the day my mother died. From cancer. I think she'll be helping me out that day. I have no fears.
I go see Dr. McCourt on the 17th to get the CT scan report and see what she says about the chemo and what we do from here. I'm thinking quarterly rechecks (with CT scan) is what she is going to recommend.
It is sure going to feel great to not have to have more chemo, to be able to get stronger and stronger every day and not have to get knocked down again by the chemo. I'm planning on getting outside more and more, doing little chores, pacing myself, building up to bigger things.
Going kayaking, hiking, riding my bike, walking the dogs, running Bub and Lil in agility, taking agility classes, GOING BACK TO WORK!!! WOW....a whole life ahead of me.
I am so lucky. So lucky to have made it through this whole (well...some parts missing); so lucky I have such a strong support group of family, friends, neighbors, co-workers, and even people who I have never met (Carol, the Delaware family; all the people who pray for me in Marie's church; the Methodist church in Putnam; at Ft Jackson) all of whom have been sending me positive messages, vibes, energy.
Thank you all.....
I am so lucky!
Next on the agenda: LIFE!
Wednesday, May 26, 2010
Back to Busy!
It sure feels good to be busy! AND, AND....I got to sweat Monday and yesterday! That felt GREAT!!!
Monday I worked outside, sweating, pulling weeds out front and hand clipping the long grass along the picket fence. There were a lot of weeds to be pulled and I worked over an hour and a half out there. The results were worth the sweat and dirt I got all over me.
Monday night we went to see Ryan play lacrosse. His season ended last night, and we knew we couldn't make that game so we made a special effort to get to Monday's game.
En route to the game we stopped at Lowe's. Sandy wanted to get vegetables to plant in the garden and I wanted some petunias to plant in the big planters on the front steps.
Well, did I get petunias! I got so many of them I was able to plant the big pots, plus two medium pots and another smaller one! I put two pots on the deck, where they provide some nice color and another pot by the stone bench out by the pond. I also got some other plants and made a hanging basket with some of them and will plant the others somewhere...I'm not yet sure where!
I also bought a bag of river rock which I spread by the quince bushes along the driveway and along part of the pond, where I had transplanted some plants to fill in a bare spot. It looks very nice there now, if I do say so myself.
After I did my outside work, I moved indoors and cleaned the WHOLE house! I mean, I dusted, cleaned sinks, bathrooms and vacuumed the whole house!
I did this because Karen and Charmine were coming to visit today and because I could clean the whole house. It felt good!
And, I didn't even take a Five Hour Energy Drink to make it through the day. I had been taking one every day to be able to get thru the golf outing, the trips to see Ryan play, etc. I was VERY proud of myself.
Yesterday I had had it with my hair. I was sick of how I was sticking up, looking strange. It wasn't curling like it did last year. So I posted on Facebook that I wanted to shave it off. Everyone was very supportive, almost enthusiastic, about this, so I mentioned it to Sandy. Sandy surprised me by saying "well go get the clippers and we'll do it!"
I was shocked because I thought she would be afraid of me getting nicked and possibly bleeding because of my immune situation. You should have heard her get after her father for continually failing to cover his mouth when he coughed! But I digress...
I raced upstairs, got the clippers and a towel and assumed the position. She zip,zipped it and VOILA! I look like a woman with a shaved head, not a freak with hair sticking two inches straight up and with a mohawk in the back!
She showed me the clumps of hair as she cut it off...I did not like the color-a horried gray, mixed with blond and darker hair. UGH!
So, if it doesn't come in to my satisfaction, or it can't be colored to make it right, I just might keep this look, for the rest of my life. It's nice and cool and easy to care for...I wouldn't mind. Of course, my first choice is to have it come in like it did last time, curly and dye-able. (is that a word?)
This AM I got up early again (yesterday I got up at 8:30!) and went down to get my blood work done. Then I ran over to Lazizah to get things for lunch--hummus, tabouli, some salads and pita bread. Then I came home, took a shower and got things set up for lunch before Charmine and Karen came to the house.
They came, we ate lunch and had a wonderful visit. We chatted for a couple of hours and parted with a pledge to get together again soon. Charmine and I were trying to talk Karen in to going kayaking with us. Hopefully, she will.
After they left I sat outside for almost an hour, writing down a list of the different birds I saw out there. I added a new "yard bird" to my list-I was quite excited to see a Cedar Waxwing out there....first time I've EVER seen one of those in my yard!
I got a kick out of watching the dogs going after squirrels, with Rocky leading the charge. They are always a day late and a dollar short it seems. I cracked up, watching a little chipmunk hop across the yard, Rocky and Bubbles looking right past it..searching for squirrels. They did not see the chipmunk at all! Then they ran right past where it went and didn't catch the scent! It was hilarious.
Tomorrow I will keep busy and hope that I DO NOT get a call from a 401 area code...that would be Ann Marie, calling to give me the bad news about my blood work. I'm hoping there is no call from Rhode Island and I can be admitted to the hospital at 8AM Friday for my LAST CHEMO!
If I do go on Friday, you'll hear the screams of joy!
Sox are on the verge of sweeping the Rays! How the tide has turned for them!
Nighty night....from your bald headed pal
Monday I worked outside, sweating, pulling weeds out front and hand clipping the long grass along the picket fence. There were a lot of weeds to be pulled and I worked over an hour and a half out there. The results were worth the sweat and dirt I got all over me.
Monday night we went to see Ryan play lacrosse. His season ended last night, and we knew we couldn't make that game so we made a special effort to get to Monday's game.
En route to the game we stopped at Lowe's. Sandy wanted to get vegetables to plant in the garden and I wanted some petunias to plant in the big planters on the front steps.
Well, did I get petunias! I got so many of them I was able to plant the big pots, plus two medium pots and another smaller one! I put two pots on the deck, where they provide some nice color and another pot by the stone bench out by the pond. I also got some other plants and made a hanging basket with some of them and will plant the others somewhere...I'm not yet sure where!
I also bought a bag of river rock which I spread by the quince bushes along the driveway and along part of the pond, where I had transplanted some plants to fill in a bare spot. It looks very nice there now, if I do say so myself.
After I did my outside work, I moved indoors and cleaned the WHOLE house! I mean, I dusted, cleaned sinks, bathrooms and vacuumed the whole house!
I did this because Karen and Charmine were coming to visit today and because I could clean the whole house. It felt good!
And, I didn't even take a Five Hour Energy Drink to make it through the day. I had been taking one every day to be able to get thru the golf outing, the trips to see Ryan play, etc. I was VERY proud of myself.
Yesterday I had had it with my hair. I was sick of how I was sticking up, looking strange. It wasn't curling like it did last year. So I posted on Facebook that I wanted to shave it off. Everyone was very supportive, almost enthusiastic, about this, so I mentioned it to Sandy. Sandy surprised me by saying "well go get the clippers and we'll do it!"
I was shocked because I thought she would be afraid of me getting nicked and possibly bleeding because of my immune situation. You should have heard her get after her father for continually failing to cover his mouth when he coughed! But I digress...
I raced upstairs, got the clippers and a towel and assumed the position. She zip,zipped it and VOILA! I look like a woman with a shaved head, not a freak with hair sticking two inches straight up and with a mohawk in the back!
She showed me the clumps of hair as she cut it off...I did not like the color-a horried gray, mixed with blond and darker hair. UGH!
So, if it doesn't come in to my satisfaction, or it can't be colored to make it right, I just might keep this look, for the rest of my life. It's nice and cool and easy to care for...I wouldn't mind. Of course, my first choice is to have it come in like it did last time, curly and dye-able. (is that a word?)
This AM I got up early again (yesterday I got up at 8:30!) and went down to get my blood work done. Then I ran over to Lazizah to get things for lunch--hummus, tabouli, some salads and pita bread. Then I came home, took a shower and got things set up for lunch before Charmine and Karen came to the house.
They came, we ate lunch and had a wonderful visit. We chatted for a couple of hours and parted with a pledge to get together again soon. Charmine and I were trying to talk Karen in to going kayaking with us. Hopefully, she will.
After they left I sat outside for almost an hour, writing down a list of the different birds I saw out there. I added a new "yard bird" to my list-I was quite excited to see a Cedar Waxwing out there....first time I've EVER seen one of those in my yard!
I got a kick out of watching the dogs going after squirrels, with Rocky leading the charge. They are always a day late and a dollar short it seems. I cracked up, watching a little chipmunk hop across the yard, Rocky and Bubbles looking right past it..searching for squirrels. They did not see the chipmunk at all! Then they ran right past where it went and didn't catch the scent! It was hilarious.
Tomorrow I will keep busy and hope that I DO NOT get a call from a 401 area code...that would be Ann Marie, calling to give me the bad news about my blood work. I'm hoping there is no call from Rhode Island and I can be admitted to the hospital at 8AM Friday for my LAST CHEMO!
If I do go on Friday, you'll hear the screams of joy!
Sox are on the verge of sweeping the Rays! How the tide has turned for them!
Nighty night....from your bald headed pal
Sunday, May 23, 2010
Big weekend, starting Friday. My coach, Pam Childs, came over in the late AM and we hitched the dogs up and took them for a little walk in the neighborhood. It was rather warm and I can't walk too far, so we kept it short. Then I had a lite lunch and Pam had something to drink and she headed home...but first she told me to take a nap.
I didn't think I would take a nap, but then I said, "she's the coach, I have to do as she says." So I laid down on the bed and slept soundly for two hours. Guess the coach was right! Then I got up, fed the dogs, got my stuff together and went off with Sandy to Waterford to watch Ryan play in a lacrosse game.
First time I've ever seen lacrosse played. Ryan is a freshman, but already he's on the varsity team. His team got their asses whupped, but he did some good things in the game. I don't understand all of it, but from what I can see, he's valuable when the ball is loose on the field...he's great at fighting for possession.
We were FREEZING at the game...the wind was blowing and really making it quite cold out there...still it was great being outside and feeling the wind and the cold.
After the game we went for ice cream...believe it or not. Got a little sundae at Friendly's in Norwich on the way home. Then we swung by the grocery store and bought two big bunches of bananas....one that is pretty ripe and one that is green.
This is my new thing...eating bananas. I get up every AM around 7 and go downstairs and get a banana. I come back up to bed and eat my banana. Then I have a second banana in the evening sometime after dinner. I think it has been helping a bit with my bowel situation. So, we go through a lot of bananas lately...as Sandy has been eating them too.
I hit the hay almost as soon as we got home...I was beat. Of course, bananas or no bananas, my system dictated that I get up about seven times that night! And in between, I had trouble falling asleep. So, it felt like I got very little sleep.
Yesterday I got up, had breakfast and got myself ready to tag along with Sandy, Frank and Ryan, who were going golfing (a birthday promise to Frank) at Chanticleer in Colchester. I had a ball riding in the cart, critiquing and texting Taylor, who was at home with a possible sinus infection. I also chatted on the phone with my cousin Fran who is safely back home in South Carolina after her visit to Putnam last week. Later I called Charmine, to check on how she's doing (she has asthmatic bronchitis) and we talked about making plans to get together with Karen some time soon.
After golfing we all went to Harry's for supper. We had the cheeseburgers of course, but I promised myself that the next time I'll try something new. They had a sign there that amazed me...it said that they are celebrating their 90th anniversary! WOW!! That's a lot of cheeseburgers! Wait, did they even have cheeseburgers 90 years ago?
I finished reading my first book on Kindle last night. Denise Mina...an author I love. She's from Scotland and writes kind of detective novels about a different world...the world of Scotland and environs. I had bought two of her books on the Kindle the other night and marveled at how they were downloaded on the Kindle within two minutes of me confirming that "yes" I wanted to order them. Instant gratification.
After I finished the book, we watched an episode of "What Not to Wear," one of our favorite shows and then I crashed. I was so pooped. And, for once, my bowels cooperated and I didn't have get up and go to the bathroom every half hour.
Good thing, because this morning Fran Johnson came over for a visit. Haven't seen Frannie in years and it was so good to visit with her today. Carol came over too, bringing fresh eggs from her brother in law's hens. Yum. We all chatted over coffee and then both of them had to go.
Sandy is out mowing the lawn, one of her favorite things to do and I'm typing this and watching the Sox. My buddy Timmy is on the mound. Sox are winning...so far.
It's been a great weekend.
Next week I weed out front, replant my tomato seedlings and my herb and salsa gardens. That should keep me busy! The weeds have been growing like, well, like weeds!
And hopefully Charmine, Karen and I can get-together.
Later!
I
I didn't think I would take a nap, but then I said, "she's the coach, I have to do as she says." So I laid down on the bed and slept soundly for two hours. Guess the coach was right! Then I got up, fed the dogs, got my stuff together and went off with Sandy to Waterford to watch Ryan play in a lacrosse game.
First time I've ever seen lacrosse played. Ryan is a freshman, but already he's on the varsity team. His team got their asses whupped, but he did some good things in the game. I don't understand all of it, but from what I can see, he's valuable when the ball is loose on the field...he's great at fighting for possession.
We were FREEZING at the game...the wind was blowing and really making it quite cold out there...still it was great being outside and feeling the wind and the cold.
After the game we went for ice cream...believe it or not. Got a little sundae at Friendly's in Norwich on the way home. Then we swung by the grocery store and bought two big bunches of bananas....one that is pretty ripe and one that is green.
This is my new thing...eating bananas. I get up every AM around 7 and go downstairs and get a banana. I come back up to bed and eat my banana. Then I have a second banana in the evening sometime after dinner. I think it has been helping a bit with my bowel situation. So, we go through a lot of bananas lately...as Sandy has been eating them too.
I hit the hay almost as soon as we got home...I was beat. Of course, bananas or no bananas, my system dictated that I get up about seven times that night! And in between, I had trouble falling asleep. So, it felt like I got very little sleep.
Yesterday I got up, had breakfast and got myself ready to tag along with Sandy, Frank and Ryan, who were going golfing (a birthday promise to Frank) at Chanticleer in Colchester. I had a ball riding in the cart, critiquing and texting Taylor, who was at home with a possible sinus infection. I also chatted on the phone with my cousin Fran who is safely back home in South Carolina after her visit to Putnam last week. Later I called Charmine, to check on how she's doing (she has asthmatic bronchitis) and we talked about making plans to get together with Karen some time soon.
After golfing we all went to Harry's for supper. We had the cheeseburgers of course, but I promised myself that the next time I'll try something new. They had a sign there that amazed me...it said that they are celebrating their 90th anniversary! WOW!! That's a lot of cheeseburgers! Wait, did they even have cheeseburgers 90 years ago?
I finished reading my first book on Kindle last night. Denise Mina...an author I love. She's from Scotland and writes kind of detective novels about a different world...the world of Scotland and environs. I had bought two of her books on the Kindle the other night and marveled at how they were downloaded on the Kindle within two minutes of me confirming that "yes" I wanted to order them. Instant gratification.
After I finished the book, we watched an episode of "What Not to Wear," one of our favorite shows and then I crashed. I was so pooped. And, for once, my bowels cooperated and I didn't have get up and go to the bathroom every half hour.
Good thing, because this morning Fran Johnson came over for a visit. Haven't seen Frannie in years and it was so good to visit with her today. Carol came over too, bringing fresh eggs from her brother in law's hens. Yum. We all chatted over coffee and then both of them had to go.
Sandy is out mowing the lawn, one of her favorite things to do and I'm typing this and watching the Sox. My buddy Timmy is on the mound. Sox are winning...so far.
It's been a great weekend.
Next week I weed out front, replant my tomato seedlings and my herb and salsa gardens. That should keep me busy! The weeds have been growing like, well, like weeds!
And hopefully Charmine, Karen and I can get-together.
Later!
I
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