Well, chemo vacations aren't always what they are cracked up to be. Although my time off allowed my body and mind to rest, it also allowed those bastard tumors to grown and multiply. The only good news from the scan, which I am VERY grateful for is that the cancer is still contained to my lungs...there is no cancer elsewhere in my body.
I'm down, but far from out...pissed at the cancer...want to scream fu@k from a mountain top...cry...and then kick something.
It's currently 11:45am and I'm sitting in the cocktail lounge, also known as the infusion suite getting magnesium, saline, steroids, anti-nausea and Doxil. Come on baby, momma needs a new pair of shoes!
Monday, October 13, 2014
Saturday, October 11, 2014
Wednesday, October 8, 2014 - PET Scan
I arrived at Providence sporting my PET scan attire...heavy cotton pull over (it's colder that a witches boob in a cast iron bra in those scanning rooms), undies, sweatpants and runners. No zippers, pulls, hooks, snaps, jewelry, etc...this makes it so much easier than having to dress down and remove your jewels. These are the words of a veteran scanner.
I introduce myself to the young lady at the counter and let her know that I am here for a PET scan. She tells me she needs to confirm that I have Regence Power Port Insurance and asks if I have my insurance card with me. I was dumbfounded...I'm certain I looked as though I was having an out of body experience. I wanted to laugh out loud...but controlled it to a grin as I explained that I used to have Regence Blue Cross Insurance, but now have Providence (as they know and had confirmed just days earlier on the phone)..and that yes, I have a Smart Port, although that has nothing to do with insurance. Now she is looking at me as though she is having an out of body experience. Next she hands me the canister of hell (the foul tasting crap you need to drink before a scan) and a cup. I ask her how long I have to drink it (time restrictions vary)..she replies, you don't have to chug it. I reply...I know, but how long...15 minutes, 30, 45? Again, she is looking through me. At this point I just turn to walk away and reply, OK, so basically you don't know.
Shortly after enjoying a few sips of my cocktail from hell, the technician calls my name and off we go. Once in the back I confirm I'm me...she starts pulling stuff out of her cart and I start rolling down my top so they can access my port. She looks at me and says...oh, you have a port. Argh! Of course I have a port...It was installed here, access here for other scans, when I spent the night with you lovely people on Fathers Day you accessed it, and again on July 24th when I had my most recent CAT scan done...here! And...I also told the woman who scheduled the ultrasound for my thyroid ultrasound that
I have a port. Bajeezus! So now, the technician has to locate an IV nurse as she isn't allowed to access my port. It just goes to show you Jane, it's always something.
I introduce myself to the young lady at the counter and let her know that I am here for a PET scan. She tells me she needs to confirm that I have Regence Power Port Insurance and asks if I have my insurance card with me. I was dumbfounded...I'm certain I looked as though I was having an out of body experience. I wanted to laugh out loud...but controlled it to a grin as I explained that I used to have Regence Blue Cross Insurance, but now have Providence (as they know and had confirmed just days earlier on the phone)..and that yes, I have a Smart Port, although that has nothing to do with insurance. Now she is looking at me as though she is having an out of body experience. Next she hands me the canister of hell (the foul tasting crap you need to drink before a scan) and a cup. I ask her how long I have to drink it (time restrictions vary)..she replies, you don't have to chug it. I reply...I know, but how long...15 minutes, 30, 45? Again, she is looking through me. At this point I just turn to walk away and reply, OK, so basically you don't know.
Shortly after enjoying a few sips of my cocktail from hell, the technician calls my name and off we go. Once in the back I confirm I'm me...she starts pulling stuff out of her cart and I start rolling down my top so they can access my port. She looks at me and says...oh, you have a port. Argh! Of course I have a port...It was installed here, access here for other scans, when I spent the night with you lovely people on Fathers Day you accessed it, and again on July 24th when I had my most recent CAT scan done...here! And...I also told the woman who scheduled the ultrasound for my thyroid ultrasound that
I have a port. Bajeezus! So now, the technician has to locate an IV nurse as she isn't allowed to access my port. It just goes to show you Jane, it's always something.
Friday, October 3, 2014 - Road Trip!
Sharon and I took a road trip and headed up to Seattle, where I got a second opinion regarding treatment moving forward. Dr. D. was great. He feels that my treatment to date has been resonable, and that I have many, many treatment options moving forward. His top three choices for me at this stage are:
1. Doxil - once a month IV treatment, it is well tolerated, and you can be on it long term (Dr. McC. has patients who have been on it four to five years). Hopefully it will stop the tumors from growing, and there is a 30% - 35% chance of tumor reduction. I'll take that!
2. Avastin - also well tolerated. Not a chemo...this drug restricts the blood vessels surrounding the tumors which keeps them from growing. This drug has the potential for serious side effects (high BP, stroke, intestinal perforation...yes, I said intestinal perforation) but they are low. Even lower for me because I have no disease in my abdomen.
3. Topotican - good response, but can have bone marrow issues.
He discussed BRCA testing (gene carrier) which determines if your cancer is hereditary. It can also help in choosing treatment if you are platin (Cisplatin and Carboplatin) sensitive. It's unlikely that I carry the gene as only 10% to 15% of the population do but...it can provide additional information that can assist in therapy. When I was first diagnosed Dr. McC. spoke with me about the BRCA testing...my recollection was that it was only to determine if my female family members were at an increased risk of cancer. I love my girls dearly, but declined...solely from a cost perspective as it was not covered by insurance and the cost was approximately $2,500 - $3,000.
Dr. D. recommended that not now, but at some point in the future I have tumor sequencing (DNA) to learn about my actual tumor...this way they can specifically target treatment. Imagine a customized cocktail. Martini, one onion, four olives...grin.
Lastly, I asked him about my lousy magnesium. He confirmed that it is caused by the platin brothers (Cisplatin and Carboplatin). Seems the platin drugs drain the magnesium from your system and it is a long term, not short term recovery. I asked define long term...he said a year. I wanted to say shit.
He closed by telling me that I need to have a PET scan (already scheduled) and to get back in treatment (also already scheduled). He also said if I thought of anything more, on the drive home, or a few days later, that I should feel free to contact him and that if I had any difficulty getting DNA testing done in Portland, he could take care of that for me.
I really liked Dr. Drescher...too bad Seattle is three hours north. Lucky me, Seattle is only three hours north. Grin. I like knowing I've got an all-star on my bench.
1. Doxil - once a month IV treatment, it is well tolerated, and you can be on it long term (Dr. McC. has patients who have been on it four to five years). Hopefully it will stop the tumors from growing, and there is a 30% - 35% chance of tumor reduction. I'll take that!
2. Avastin - also well tolerated. Not a chemo...this drug restricts the blood vessels surrounding the tumors which keeps them from growing. This drug has the potential for serious side effects (high BP, stroke, intestinal perforation...yes, I said intestinal perforation) but they are low. Even lower for me because I have no disease in my abdomen.
3. Topotican - good response, but can have bone marrow issues.
He discussed BRCA testing (gene carrier) which determines if your cancer is hereditary. It can also help in choosing treatment if you are platin (Cisplatin and Carboplatin) sensitive. It's unlikely that I carry the gene as only 10% to 15% of the population do but...it can provide additional information that can assist in therapy. When I was first diagnosed Dr. McC. spoke with me about the BRCA testing...my recollection was that it was only to determine if my female family members were at an increased risk of cancer. I love my girls dearly, but declined...solely from a cost perspective as it was not covered by insurance and the cost was approximately $2,500 - $3,000.
Dr. D. recommended that not now, but at some point in the future I have tumor sequencing (DNA) to learn about my actual tumor...this way they can specifically target treatment. Imagine a customized cocktail. Martini, one onion, four olives...grin.
Lastly, I asked him about my lousy magnesium. He confirmed that it is caused by the platin brothers (Cisplatin and Carboplatin). Seems the platin drugs drain the magnesium from your system and it is a long term, not short term recovery. I asked define long term...he said a year. I wanted to say shit.
He closed by telling me that I need to have a PET scan (already scheduled) and to get back in treatment (also already scheduled). He also said if I thought of anything more, on the drive home, or a few days later, that I should feel free to contact him and that if I had any difficulty getting DNA testing done in Portland, he could take care of that for me.
I really liked Dr. Drescher...too bad Seattle is three hours north. Lucky me, Seattle is only three hours north. Grin. I like knowing I've got an all-star on my bench.
Friday, October 10, 2014
September 28, 2014 - End of Summer
Sad to say with the end of summer, also comes the end of my chemo vacation. It's been just under three months since I have had chemo. It has been a lovely holiday, even if I did spend three mornings a week at Compass getting magnesium infusions. I am still coughing a fair amount...but I knew I would. I feel like I have regained some of my stamina. And I know that my blood work has improved. Today I have labs, vitals, see Dr. McC. and of course...a magnesium infusion.
It was good to check in with Dr. McC. as I have not seen her in weeks. She is only at the Rose Quarter office on Mondays, and for my past two appointments she has been out of the office. Dr. McC. and I talked about treatment moving forward. Her first choice of treatment is Doxil, which is also my first choice based on what we talked about previously. I also talked with her about me choosing to get a second opinion (which happens this Friday, Oct. 3rd)...she was understanding and supportive. She is scheduling me for a PET scan next week, and a follow up appointment with her on October 13th.
So about that PET scan...a very nice man phones from Providence to confirm my doctors request for the PET scan and to provide me with some instructions for the morning of. He tells me when he is done he will transfer me to the scheduler. This is where the fun begins....and let me just start by saying...holy Mary, Mother of God. Drive your own health care people...otherwise there is going to be a multiple car pile up! She begins by saying hi, my name is --- and I am going to schedule the ultrasound for your thyroid. WTF? I explained that she had to be looking at another patients file as I was being scheduled for a PET scan. She asked to put me on hold, came back, then she asked to put me on hold again as she was having trouble with the calendar...finally I said...why don't you call me back when you are ready. She agreed and we disconnected. When she phoned back she confirmed that I have Providence Insurance...and wanted to know if I had a history of cancer. Gee...let me think
on that. I told her I have a port (remember this...it will be discussed later...lol)...that seemed to complete the conversation. My PET scan schedule for Wednesday, October 8th...just hope I'm not scheduled for an ultra sound of my thyroid.
It was good to check in with Dr. McC. as I have not seen her in weeks. She is only at the Rose Quarter office on Mondays, and for my past two appointments she has been out of the office. Dr. McC. and I talked about treatment moving forward. Her first choice of treatment is Doxil, which is also my first choice based on what we talked about previously. I also talked with her about me choosing to get a second opinion (which happens this Friday, Oct. 3rd)...she was understanding and supportive. She is scheduling me for a PET scan next week, and a follow up appointment with her on October 13th.
So about that PET scan...a very nice man phones from Providence to confirm my doctors request for the PET scan and to provide me with some instructions for the morning of. He tells me when he is done he will transfer me to the scheduler. This is where the fun begins....and let me just start by saying...holy Mary, Mother of God. Drive your own health care people...otherwise there is going to be a multiple car pile up! She begins by saying hi, my name is --- and I am going to schedule the ultrasound for your thyroid. WTF? I explained that she had to be looking at another patients file as I was being scheduled for a PET scan. She asked to put me on hold, came back, then she asked to put me on hold again as she was having trouble with the calendar...finally I said...why don't you call me back when you are ready. She agreed and we disconnected. When she phoned back she confirmed that I have Providence Insurance...and wanted to know if I had a history of cancer. Gee...let me think
on that. I told her I have a port (remember this...it will be discussed later...lol)...that seemed to complete the conversation. My PET scan schedule for Wednesday, October 8th...just hope I'm not scheduled for an ultra sound of my thyroid.
Wednesday, August 13, 2014
Monday - July 28, 2014 - CAT Scan Results
Well shit. I received the results of my CAT scan today and the tumors have all grown. Not a lot, but slightly. The good news is there is no sign of cancer anywhere else in my body...meaning the cancer hasn't metastasized elsewhere and I still have only the original dirty half dozen in my lungs.
Dr. McC. has discussed four treatment options for future use...but for now, as I mentioned in my previous post, I am going to take a chemo vacation. I will still be receiving magnesium three times weekly...but no treatment.
Quiet times...visitor from Oz...beach...mountains...rinse, lather, repeat.
Dr. McC. has discussed four treatment options for future use...but for now, as I mentioned in my previous post, I am going to take a chemo vacation. I will still be receiving magnesium three times weekly...but no treatment.
Quiet times...visitor from Oz...beach...mountains...rinse, lather, repeat.
Monday, July 14, 2014
Monday, July 14, 2014 - Another Day in Magnesium Paradise
Let's see...since the last time we spoke, I have had my final Carboplatin treatment (my platelets have put up a sign reading...please do not disturb, occupant is on a chemo vacation), and seven magnesium infusions. My magnesium has been as high as 1.00 (laughing)...and as low as .8. Holy bat shit...really? No matter what we do, we just can't get the magnesium up. If there is a Viagra of Magnesium...please, someone let me know.
I have a CAT scan scheduled for Thursday, July 24th...then a follow up with Dr. McC. the following week. A second opinion is in the wind, not because I have lost faith in my Oncologist, but because I owe it to myself to get one. Taxol is a possible contender for the future, or...I might participate in a Phase I study for women with reoccurring ovarian cancer. But for right now, this girl is on vacation...chemo vacation.
This is what chemo vacation looks like...
This is what chemo vacation looks like...
Wednesday, July 2, 2014
Monday, June 30, 2014 - No Treatment Today
I was stoked this morning as I thought to myself...well girl, you are gonna make it through another round of chemo...today is your last treatment and then you are going on a chemo vacation...whoot-hoot! Or, so I thought. Seems my platelets had other ideas as they were at an all time low of 69...balls. What that means is my body needs another week to get those puppies (platelets) up to a level of 100 or better. I did receive my magnesium infusion as my magnesium was at .9...still...double balls.
The hives that have taken up residency on my chest (from whatever is plaguing me) are still there. Clearly I am having an allergic reaction to something. Personally, I think it's to much fricking magnesium. On Tuesday when I woke up I looked as though I had gone two rounds with Mohammad Ali...my right eye was almost swollen shut...triple balls. Nice visual, eh?
Magnesium infusion today (Wednesday)...yes, again. Again on Saturday, as they are closed on Friday for the fourth. Then back in on Monday for the full meal deal (labs, vitals, doc visit, magnesium, and treatment) if my body is playing nice. Come on baby, Momma needs a chemo vacation!
The hives that have taken up residency on my chest (from whatever is plaguing me) are still there. Clearly I am having an allergic reaction to something. Personally, I think it's to much fricking magnesium. On Tuesday when I woke up I looked as though I had gone two rounds with Mohammad Ali...my right eye was almost swollen shut...triple balls. Nice visual, eh?
Magnesium infusion today (Wednesday)...yes, again. Again on Saturday, as they are closed on Friday for the fourth. Then back in on Monday for the full meal deal (labs, vitals, doc visit, magnesium, and treatment) if my body is playing nice. Come on baby, Momma needs a chemo vacation!
Saturday, June 28, 2014
Saturday, June 28, 2014 - Chemo Sucks
Well...it's all fun and games until your magnesium level goes in the shitter (whenever I hear or use the word shitter, I think of cousin Eddie in National Lampoon's Christmas vacation...shitters full! Love that guy.). This past week I had three magnesium infusions (Monday, Wednesday, and Friday...this will be my regular schedule for now)...each time my levels were .9. Personally, I think the lab is dicking with me (not really). But good gawd, how can they still be .9 after 12 magnesium pills a day, three magnesium infusions in five days, and consuming magnesium rich foods?
After seeing Dr. McC. on Monday, and talking about treatment number six this coming Monday (June 30th) I will be having it. She feels the benefit of the final treatment outweighs the negative. So, I have put my big girl panties on and will go on Monday to complete my latest round of chemo. Sometime later in the week...I will have a CAT scan to get a look at the dirty half dozen in my lungs...sneaky little bastards. Immediately following I hope to be on chemo vacation for a minimum of three months to let my body heal, relax and go on a couple of mini-trips. I will still be going in for blood work, and multiple magnesium infusions weekly...but no more chemo for now.
After seeing Dr. McC. on Monday, and talking about treatment number six this coming Monday (June 30th) I will be having it. She feels the benefit of the final treatment outweighs the negative. So, I have put my big girl panties on and will go on Monday to complete my latest round of chemo. Sometime later in the week...I will have a CAT scan to get a look at the dirty half dozen in my lungs...sneaky little bastards. Immediately following I hope to be on chemo vacation for a minimum of three months to let my body heal, relax and go on a couple of mini-trips. I will still be going in for blood work, and multiple magnesium infusions weekly...but no more chemo for now.
Sunday, June 22, 2014
June 20, 2014 - Magnesium, Potassium, and Phosphorus...Oh My!
Since my last post I have had treatment on June 9th (#5), a couple of magnesium infusions (still struggling with low magnesium) and an over night stay in the hospital (Providence). All fingers point towards my low magnesium level putting me into A-Fib (atrial fibrillation) on Father's Day morning. I woke up, took a quick potty break, headed back upstairs and bam...I could feel my heart beat in my throat and the rate was very irregular. After a few minutes I called Mike and asked him to come take me to the ER. When I arrived my heart rate was 180. They did a blood and urine work up, hooked me up to a bag of magnesium, gave me a beta blocker (slows your heart rate) and talked about putting me under and shocking my heart if it didn't go back into rhythm on its own. As my niece Toni would say...oh hell no. It wasn't too long after I had been there that they made the decision to admit me. Up to the cardiac floor I went where I spent the next 36 hours. Long story short, my heart put itself back into rhythm in the middle of the night after more magnesium, potassium, phosphorus and beta blockers throughout the day and evening. On Monday morning they did an echocardiogram and told me I could potentially go home later in the day if the results were good. Seems my ticker is in good shape so...later that day they sent me on my way with instructions to have my magnesium levels check frequently...frequently like three times a week and to have an infusion if my levels get below 2. Mine have been hanging between .7 and .9 for the past several months. I have also been taking oral magnesium daily for weeks and weeks. The attending physician order a change to one of my drugs and prescribed me a delayed released magnesium.
I had an infusion on Tuesday...levels were already down to 1.00. I had blood drawn this morning (Friday) and I am currently sitting in the infusion suite having another as my magnesium is back down to .9. A slow infusion...like four hours slow. Seems the slower it drips, the better your body absorbs it. Hmmmmm.
I see Dr. McC. on Monday (June 23rd) to discuss all of the fun I have had this past week. Then when
I'm done with her, I see Dr. Hendin (my primary care physician) to do the same.
Treatment #6 is scheduled for Monday, June 30th...however, if Dr. McC. gives me the go ahead I am going to skip it and start my chemo vacation...my body needs a break.
I had an infusion on Tuesday...levels were already down to 1.00. I had blood drawn this morning (Friday) and I am currently sitting in the infusion suite having another as my magnesium is back down to .9. A slow infusion...like four hours slow. Seems the slower it drips, the better your body absorbs it. Hmmmmm.
I see Dr. McC. on Monday (June 23rd) to discuss all of the fun I have had this past week. Then when
I'm done with her, I see Dr. Hendin (my primary care physician) to do the same.
Treatment #6 is scheduled for Monday, June 30th...however, if Dr. McC. gives me the go ahead I am going to skip it and start my chemo vacation...my body needs a break.
Wednesday, June 4, 2014
Sunday, June 1st - What's Happening?
Hello friends...
Forgive me for my absence, I just haven't felt like writing. No need to panic, nothings wrong, I just haven't been moved to write.
Since my last post I have had two treatments, a CAT scan, and a PET scan. Treatment continues to be delayed by a week each time because my platelets aren't playing nice (to low...80, 83...they need to be 100 or better) and they seem to want/need/require an additional week of fun and frolic...OK by me. I had a routine CAT scan at the half way mark (after three treatments) and found that the tumors in my lungs have pretty much stayed the same...my head scan came back clean...but the radiologist found a potentially suspicious mass in my small intestine...hence, the PET scan. I really didn't feel that there was an issue in my abdominal area, but based on the Radiologists recommendation, Dr. McC. said I was having a PET scan. The results came back clean...whatever the radiologist saw on that particular day was just part of me. I admit though, I teared up when she said my abdominal area was clean. Mike and I celebrated by going upstairs and having treatment...ha! So, the bottom line is...I still have the original dirty half dozen in my lungs, the PET scan showed they have increased in size by a smidgen...my head is clean, and my abdomen is clean...no cancer elsewhere in my body. Where do we go from here? Funny, I asked the same question. Treatment continues as scheduled until I have completed six rounds (#5 is scheduled for 6/9, #6 for 6/29...each will probably be delayed by a week). Increasing the dosage to shrink the tumors is not an option as my body is struggling with the half dosage I am currently on (platelets, magnesium, etc.). When I complete treatment #6 Dr. McC. has offered me a chemo vacation. Hmmmm, Cindy says to Dr.McC....what does this chemo vacation entail? A week, two, four? Dr. McC. replies...three months. Wow...three months with no treatment. I have to admit, it made me smile. I would feel better about it if the tumors were shrinking...but then again if they were, I probably wouldn't take a break. Dr. McC.'s objective for me is quality of life...so if I want to take a break and give my mind and body a rest, she fully supports it. She reinforces that I am in tune with my body and that if I should start having symptoms all I need to do is come in and we'll address them. I feel like a big kid...it's five weeks until schools out...and three months of summer vacation is just in front of me...well, maybe. Grin.
Forgive me for my absence, I just haven't felt like writing. No need to panic, nothings wrong, I just haven't been moved to write.
Since my last post I have had two treatments, a CAT scan, and a PET scan. Treatment continues to be delayed by a week each time because my platelets aren't playing nice (to low...80, 83...they need to be 100 or better) and they seem to want/need/require an additional week of fun and frolic...OK by me. I had a routine CAT scan at the half way mark (after three treatments) and found that the tumors in my lungs have pretty much stayed the same...my head scan came back clean...but the radiologist found a potentially suspicious mass in my small intestine...hence, the PET scan. I really didn't feel that there was an issue in my abdominal area, but based on the Radiologists recommendation, Dr. McC. said I was having a PET scan. The results came back clean...whatever the radiologist saw on that particular day was just part of me. I admit though, I teared up when she said my abdominal area was clean. Mike and I celebrated by going upstairs and having treatment...ha! So, the bottom line is...I still have the original dirty half dozen in my lungs, the PET scan showed they have increased in size by a smidgen...my head is clean, and my abdomen is clean...no cancer elsewhere in my body. Where do we go from here? Funny, I asked the same question. Treatment continues as scheduled until I have completed six rounds (#5 is scheduled for 6/9, #6 for 6/29...each will probably be delayed by a week). Increasing the dosage to shrink the tumors is not an option as my body is struggling with the half dosage I am currently on (platelets, magnesium, etc.). When I complete treatment #6 Dr. McC. has offered me a chemo vacation. Hmmmm, Cindy says to Dr.McC....what does this chemo vacation entail? A week, two, four? Dr. McC. replies...three months. Wow...three months with no treatment. I have to admit, it made me smile. I would feel better about it if the tumors were shrinking...but then again if they were, I probably wouldn't take a break. Dr. McC.'s objective for me is quality of life...so if I want to take a break and give my mind and body a rest, she fully supports it. She reinforces that I am in tune with my body and that if I should start having symptoms all I need to do is come in and we'll address them. I feel like a big kid...it's five weeks until schools out...and three months of summer vacation is just in front of me...well, maybe. Grin.
Tuesday, April 22, 2014
Monday, April 21, 2014 - Treatment #3 (Do-Over)
Mike is my trusted co-pilot while Sandy keeps the home fires burning. I love my sibs!
Labs...looking good girl! Platelets 130, up from 80, treatment is happening!
Dr. McC....things look good, lets do this...and then we will set you up for three more cycles. I/we knew that was coming. I am feeling better though. Better breathing, way less coughing, minimal wheezing...treatment is working...I can feel it baby!
I told Charlotte (my Physicians Assistant) that I hadn't heard back from the scheduling staff in regard to my head scan..she said that she would discuss it with D. McC. before she came into see me. Dr. McC. informed me that my insurance company had denied authorization for a scan. Then she told me not to be concerned, she would be contacting them today and they would authorize the scan. I love it when Dr. McC. puts her big girl doctor panties on. Not that they aren't always on...I like that about her.
Upstairs (Infusion Suite) I received a reduced amount of steroids as promised...10mgs instead of 20mgs and had none of the crazy side effects I have had during my last two treatments. I swear they slipped some crack in there for treatments one and two.
Tonight I watched Dancing with the Stars...smiling, tearing up, mild headache, rapid heart beat, hungry (I've eaten already...dinner and a snack), can you say steroids?
Labs...looking good girl! Platelets 130, up from 80, treatment is happening!
Dr. McC....things look good, lets do this...and then we will set you up for three more cycles. I/we knew that was coming. I am feeling better though. Better breathing, way less coughing, minimal wheezing...treatment is working...I can feel it baby!
I told Charlotte (my Physicians Assistant) that I hadn't heard back from the scheduling staff in regard to my head scan..she said that she would discuss it with D. McC. before she came into see me. Dr. McC. informed me that my insurance company had denied authorization for a scan. Then she told me not to be concerned, she would be contacting them today and they would authorize the scan. I love it when Dr. McC. puts her big girl doctor panties on. Not that they aren't always on...I like that about her.
Upstairs (Infusion Suite) I received a reduced amount of steroids as promised...10mgs instead of 20mgs and had none of the crazy side effects I have had during my last two treatments. I swear they slipped some crack in there for treatments one and two.
Tonight I watched Dancing with the Stars...smiling, tearing up, mild headache, rapid heart beat, hungry (I've eaten already...dinner and a snack), can you say steroids?
Monday, April 14, 2014 - No Treatment Today
Sharon is my co-pilot today while Sandy keeps watch at home.
Today I had a full morning scheduled...labs, a visit with Dr. McC., and treatment number three...or so I thought. Seems my platelets were thinking they needed another week off so...no treatment for this girl today. In order for treatment to take place my platelets need to score 100 or above. Mine scored a whopping 80. For the audio version of the previous sentence please imagine Charlie Brown...wah-wah. Also, my low magnesium, which I have been taking supplements for went from .7 to .8. Again...wah-wah. Cindy gets to come back on Wednesday and have a magnesium infusion...oh boy.
Today I had a full morning scheduled...labs, a visit with Dr. McC., and treatment number three...or so I thought. Seems my platelets were thinking they needed another week off so...no treatment for this girl today. In order for treatment to take place my platelets need to score 100 or above. Mine scored a whopping 80. For the audio version of the previous sentence please imagine Charlie Brown...wah-wah. Also, my low magnesium, which I have been taking supplements for went from .7 to .8. Again...wah-wah. Cindy gets to come back on Wednesday and have a magnesium infusion...oh boy.
I spoke with Dr. McC. about all of the headaches I have been having (previously discussed with the P.A.)...which is highly unusual for me given that I am not a headache person. She is scheduling a scan of my head within the next two weeks just to rule out any uglies. I also spoke with Dr. McC. about my reaction to the steroids...she said she wasn't really concerned about the slurred speech....hmmm, perhaps that's because she isn't the one who feels like she has chugged a six pack of Mike's Hard Limeade and is drooling.
All in all things are going well. There was a time in my life when if Dr.McC. said "no treatment for you this week" I would have been unhappy, somewhat concerned, and unsure as to what negative impact this would have on me. Now I'm like...really, coolio...another week off, another week to feel even better. Funny how we grow and adapt...even when facing a chronic illness. And speaking of funny...Dr. McC.'s parting words to me were...come back next week and bring your platelets...giggling.
Monday - March 24, 2014 - Treatment #2
Mike drives the bus (OK, so its really a Jeep) and escorts me to treatment.
Blood draw was the usual routine. A large needle goes in, blood comes out, tubing is capped off and ready for the juice bar upstairs.
Today I see Annie, one of the Physicians Assistants because Dr. McC. is out of the office. Everything is pretty much the norm. I talk to her about my recurring headaches...this is unusual as I am not a headache person. She suggests that we check my magnesium. I also talk with her about the reaction I had to the Benadryl during treatment. Right now I am hating that crap and dreading receiving it again.
Upstairs I draw Dinah, my oncology goddess of the day. A remarkable woman who assisted in establishing Compass Oncology. The feeling of great knowledge, reassurance and comfort is always in the air when Dinah is around. I chat with her about my reaction to Benadryl during my first treatment...seems it wasn't the Benadryl, it was the steroids. Ah steroids...I know they serve their purpose, but come with so many lovely side effects. Super hero powers, super hero appetite, insomnia (my iPad is my best friend during these times), etc., etc.
Treatment begins...IV fluids, Benadryl, and steroids.....wait for it, wait or it...bingo! Once again I feel high, and as if my tongue is getting thick (which it isn't), and that I am slurring my speech. I ask Mike...am I slurring my speech? He says no, but I don't believe him....grinning....after all he is the one that saran wrapped the toilet seat when we were younger. I'm sure you get the picture. As I struggle to keep my eyes open Dinah shows up with one of the volunteer Reiki technicians and asks if I would like a treatment. Yes please! That's pretty much all it took. I was awake when it started, struggled desperately to stay awake, and eventually gave in. When I woke up the session was over and the technician was gone.
A few days later I get a phone call from the triage nurse, telling me that my magnesium is on the low end if normal...and that they are calling me in a prescription for a supplement that they want me to take three times a day. Okee-dokee.
Thursday, March 6, 2014
Monday, March 3, 2014 - Round Four
Mike keeps the home fires burning while Sharon acts as my co-pilot.
Everything was pretty much routine...
Labs - blood work results are all within normal range...which I find remarkable give that three weeks ago I had just finished up six months of Etoposide. Go body, go body, go body!
Dr. McC. - your labs look great.
Me - that's a good thing.
Dr. McC. - you ready to get started?
Me - Lets do it.
Dr. McC. - labs in two weeks, then a follow up with me and treatment number two in three weeks.
Me - I'm off (literally...grin). Upstairs I go.
Infusion Suite - the familiar faces of the infusion suite nurses smile and wave as they see me in the distance. Each one tells me how nice it is to see me, but not given the circumstances. Even though I hate why I'm here, there is a feeling of comfort. Beverly, is my assigned oncology nurse for the day...a lovely woman that I am very familiar with. After hugs, and a chat, we get the bags rolling. A bag of saline solution, anti-biotics, Benadryl (I'll get back to the Benadryl...whoa) and a big ole bag of Carboplatin. So, Benadryl...we all know what it is, most of us have used it, but good gawd...a bag of it? Beverly explains that Dr. Mc.C. ordered the Benadryl because when you have used Carboplatin previously, which I have on two occasions, your body can start to produce antibodies that say...uh, no thank you, you have been here before and you are no longer welcome. The Benadryl tells your body...chill out babe, all are welcome here. After a few minutes of being hooked up, I felt high (not that I would know what that feels like...grin), I felt like my tongue was swollen, that I was slurring my speech...then all of a sudden I felt as though I didn't have the strength to hold my head up. Me - Sharon, I need a nap. Sharon - OK babe, let me get you a blanket. Me - blanket on, chair reclined, big girl over and out. Holy crap...I woke up about 30 minutes later with my upper teeth over my lower lip. I'm wondering if Sharon got photos?
Monday night I slept about two hours, Tuesday night I went to bed at 5:30am (actually Wednesday am) and slept for seven hours...steroids! I am finally winding down, but don't feel great. If memory serves me correctly, I should rally by Friday. Fingers crossed!
Monday, February 17, 2014
Monday, February 17, 2014 - CAT Scan Results & Next Steps
Well...I did not receive good news today. Three months ago when I had my CAT scan, the six tumors I had in my lungs were reported as follows: two were no longer visible, two were reduced in size, and two had increased in size. Today's results show that all six tumors are again present, all increasing in size and the two larger tumors doubling in size. I wasn't confident that I was going to be clean (I've been having too much difficulty breathing and coughing), but this isn't the news I expected. On the up side, it's still the original six and no sign of disease elsewhere. This is a very good thing.
Next steps...Dr. McC. believes our best bet is once again Carboplatin, but this time as a single treatment. Meaning that there will not be an accompanying drug such as Taxol or Gemcitabine. I received Carboplatin twice before, and both times it took me to the promised land of remission. Since I have not had Carboplatin in approximately nine months, she is hopeful it will once again lead me to remission. I asked if I could take a break before beginning the new treatment regime without it being detrimental to my health. She said yes, we just don't want to wait too long because I need you to be healthy enough to receive treatment. Treatment will be once every three weeks. After three cycles (nine weeks) we will do a CAT scan to see what progress has been made.
My first treatment is scheduled for Monday, February 24th. Dr. McC. said its easier for her and the infusion suite to have me on the schedule then to try and get me in last minute. She then followed up by saying...if you wanna come in for treatment fine, if you want to cancel that's OK too.
I dropped the "F" bomb in front of Dr. McC. and told her I was going to go home, think things through and maybe break something. She told me to break something good.
Next steps...Dr. McC. believes our best bet is once again Carboplatin, but this time as a single treatment. Meaning that there will not be an accompanying drug such as Taxol or Gemcitabine. I received Carboplatin twice before, and both times it took me to the promised land of remission. Since I have not had Carboplatin in approximately nine months, she is hopeful it will once again lead me to remission. I asked if I could take a break before beginning the new treatment regime without it being detrimental to my health. She said yes, we just don't want to wait too long because I need you to be healthy enough to receive treatment. Treatment will be once every three weeks. After three cycles (nine weeks) we will do a CAT scan to see what progress has been made.
My first treatment is scheduled for Monday, February 24th. Dr. McC. said its easier for her and the infusion suite to have me on the schedule then to try and get me in last minute. She then followed up by saying...if you wanna come in for treatment fine, if you want to cancel that's OK too.
I dropped the "F" bomb in front of Dr. McC. and told her I was going to go home, think things through and maybe break something. She told me to break something good.
Tuesday, February 11, 2014
Tuesday, February 11, 2014 - Treatment is Complete
What fun the past six months have been...not! Or as my niece, Toni would say...oh, hell no.
I am happy to say that I have completed, and survived six months of Etoposide (treatment). This girl is so happy I cried. Partially because that part of my journey is finished, done, finito...and partially because I don't know what the future holds for me. I guess that's life though, no matter what your situation in life, you never know whats around the corner and what tomorrow might bring...(face to the sunshine).
Self administering your own treatment is very different than going to the Oncology Clinic. When you are feeling lousy to begin with, and you realize its that time of day...time to take your drugs...which of course are going to add to your feelings of lousiness...I would sometimes need to put my big girl panties on and suck it up. I often thought of one of my favorite quotes from John Wayne..."Courage is being scared to death...and saddling up anyway." So true, so true.
I currently feel like crap. That's not unusual, and certainly not unusual at the end of a cycle. But today was a new day...a new beginning...life without treatment. It takes a couple of weeks to start feeling better...and several months to start feeling good. I want to look back years from now and say...wow, what a ride....but I did it.
I have a CAT scan in the morning and a follow up appointment with Dr. McC. on Monday for the results....wish me luck!
I am happy to say that I have completed, and survived six months of Etoposide (treatment). This girl is so happy I cried. Partially because that part of my journey is finished, done, finito...and partially because I don't know what the future holds for me. I guess that's life though, no matter what your situation in life, you never know whats around the corner and what tomorrow might bring...(face to the sunshine).
Self administering your own treatment is very different than going to the Oncology Clinic. When you are feeling lousy to begin with, and you realize its that time of day...time to take your drugs...which of course are going to add to your feelings of lousiness...I would sometimes need to put my big girl panties on and suck it up. I often thought of one of my favorite quotes from John Wayne..."Courage is being scared to death...and saddling up anyway." So true, so true.
I currently feel like crap. That's not unusual, and certainly not unusual at the end of a cycle. But today was a new day...a new beginning...life without treatment. It takes a couple of weeks to start feeling better...and several months to start feeling good. I want to look back years from now and say...wow, what a ride....but I did it.
I have a CAT scan in the morning and a follow up appointment with Dr. McC. on Monday for the results....wish me luck!
Monday, January 20, 2014
Monday, January 20, 2014 - Cycle 6...The Final Frontier
Well kids...here we are. It has been a long journey to cycle number six which begins tomorrow. The final frontier of Etoposide...never to be repeated. Out of all my treatments I think this has been the most challenging...maybe because its the freshest in my mind and body. I won't miss the queasiness, or the calls on the porcelain phone...and I certainly won't miss the fatigue. On the up side I never developed blisters on my palms which is a possible side effect of Etoposide.
Reflecting on my journey these past two and a half years...all of my treatments have had the uglies in one form or another. Treatment is crap...it just is. A wise Indian once said...you no hungry, no eat cow shit...you hungry, cow shit not so bad.
What's next? Labs 2/3...CAT scan 2/12...Labs and a visit with Dr. McC. 2/17.
Reflecting on my journey these past two and a half years...all of my treatments have had the uglies in one form or another. Treatment is crap...it just is. A wise Indian once said...you no hungry, no eat cow shit...you hungry, cow shit not so bad.
What's next? Labs 2/3...CAT scan 2/12...Labs and a visit with Dr. McC. 2/17.
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