Yesterday was a good day for me-- probably the best since my surgery. I emailed some customers, shopped at Target (albeit briefly!), and had lunch at Cracker Barrel. I even ate most of my vegetables, which is an accomplishment (this, from a former eating machine!).
I have lost about 35 lbs total-- and back to a weight I haven't seen in several years, which is quite lovely. But I don't recommend the diet! Appetite has been a big problem, which is funny since for years I've joked about wanting to be stricken with anorexia! And worst part is I have nothing to wear (like transitional clothes aren't tough enough already!), and don't really care. I certainly have zero inclination to shop (I know-- take my temperature!!!). I survived in sundresses for awhile, which became increasingly baggy. And now I've discovered that even my old "thin clothes" look like clown clothes on me. Who cares-- I'll enjoy the new body next year!
Speaking of next year, you probably won't recognize me. In addition to being skinny I will be bald. My hair is coming out when I just shake my head. I am so tired of hair everywhere, but I don't think I'm going to be one of those people with the guts to go ahead and shave it off. I'll probably just keep clinging to these dwindling strands as long as I can. My girlfriend has generously offered to go wig shopping with me next week so we'll see what happens. I'm thinking that since everybody's going to know it's not my hair, I might as well go for a new fun color. One of my cancer guides recommends cutting a swatch from the front of your head before you lose all your hair, so you can match up your natural color. It's been so many years since I've seen my "natural color," I'd have no idea what it is anyway, so we'll just take potluck!
But wait-- there's more fun to come! I'm sitting here the other night, finally going through a bunch of literature they gave me when I started chemo. (You can only absorb so much of this stuff at one time, I promise you). Anyway, I came across this sage advice: "Take a good close-up photo of your face before treatment as a guide for applying eyebrows after hair loss." Are you kidding me?!?!? I was ready for the other part but had given no thought to eyebrows. Sure enough, they're falling out as well. Heck, I thought the hair loss would mean less grooming time, not more. I was actually in a sad way looking forward to just popping on a hat and heading out the door. Now I'm going to have to draw on my freaking eyebrows first-- wish me luck on that one! (Eyelashes-- what do you think? The book doesn't mention them, but I'm betting I can't mascara nubs!)
I have come to the conclusion-- in a long-delayed moment of self-awareness-- that perhaps some of my meds are causing some of my side effects. Now, not the chemo meds-- that's a given. But I've been taking something to sleep since I came home from the hospital. In fact, I have 3 different choices on prescription sleep meds. My doctors really wanted me to sleep. But I was sleeping 9-10 hours a night and on awakening I had zero appetite-- I mean, I couldn't eat anything for hours, and felt very lethargic. So, last night was my 3rd night taking absolutely nothing. The good news is I feel much better in the morning. I can eat and I have more energy. The bad news is I'm not sleeping a lot, but I'm hoping it will work itself out over the next few days.
And medications? I've lost count. They are all perched on my kitchen counter like so many little soldiers, eagerly awaiting their chance to charge into battle. I have 3 for sleeping, 3 for nausea (different levels), 1 for anxiety (yeah, like this stuff wouldn't make anybody anxious!), an appetite enhancer, an anti-depressant (ditto), plus over-the counter stuff like fiber and Ensure. Whew! It's a good thing Charlie's still home at the moment to help me manage. Between sorting out meds and correcting insurance bills he does have a full-time job.
To make matters worse, have you noticed that your prescriptions these days-- if they're generic, I guess-- don't have the same name on them that your doctor prescribes? In other words, he's written me a prescription for Zofran, for nausea. And he asks me how the Zofran is working. Well, the "Zofran" bottle says Ondansetron on it in big bold letters. I don't see "Zofran" anywhere. If I get out my glasses and peer really closely, underneath, in tee-tiny print, it does say "generic for Zofran." But I never even saw that till my pharmacist brother-in-law pointed it out. And all my meds are that way. I'm looking for Xanax... oh, that would be the bottle that says Alprazolam. Right, like I have enough brain cells left to make those connections every time-- Maybe I've been taking the nausea medicine to sleep and that's my problem-- who knows?
Thanks for listening to my sad tale, but mostly, thanks for keeping me in your prayers. I'll keep you posted.
Thursday, September 10, 2009
Friday, September 4, 2009
2nd treatment . . . finally!
This is Pam's youngest child, Caitlin. I'm happy to report that she successfully completed her second treatment of chemo this week! She and my dad went into the hospital on Wednesday with all of our fingers crossed, and thankfully her white blood cell counts were high enough to continue the treatment. It was nice for her to have a couple weeks off (especially so that she could attend both of my sister's baby showers in good spirits!), but we didn't want to prolong the process any more! She was hooked to her little fanny pack for the past 3 days and then went in this morning for them to take it back. Now she plans on taking it easy this weekend and getting lots of rest...definitely no labor for her this holiday weekend! Thanks for all your continued prayers and support, and I hope you all have a wonderful holiday!!
me, my sister Allison, my sister-in-law Jodi, and my mom at one of Allison's baby showers!
me, my sister Allison, my sister-in-law Jodi, and my mom at one of Allison's baby showers!
Thursday, August 27, 2009
Another week of ... nothing
Yesterday was supposed to be chemo again. I showed up, hooked up (which is the unpleasant part), and then they ran my bloodwork and my white cell count was still too low so we're putting off chemo for another week. I feel like such a failure-- one round of chemo and I can't get strong enough for the second round. How am I ever going to complete 11 more?
My white cell count last week was 1.1 and had only risen to 1.3 this week. And apparently there's nothing I can do or not do to influence it. Diet, exercise, etc. have no bearing on it. My body just has to do the work. So now the plan is to wait till next week and try again. My oncologist is optimistic that next week will work. And apparently there's a shot of something they can give me that will help the white blood count but the catch is they have to do it after chemo. Then once they've given me the shot (which will have side effects, my brother tells me...), I have to wait 2 more weeks for chemo. So at least there's a plan, but it's definitely trying my patience. Just feel like I'm in limbo here, waiting.
Meanwhile, my hair is falling out faster than I can sweep it up. SIGH... I know back in July I said I could deal with it if that came to pass, but it's still really difficult, especially since my oncologist said it probably would thin some, but not all fall out. Well, I guess there's still hope for that-- maybe it's just really thinning! I'll keep you posted on that. (And all this hair loss with only one chemo treatment so far!)
On a personal note, Adam & Jodi (my son & daughter-in-law who live in VA), were here for 10 days and just left on Monday. Was sad to see them go. This is the third thime they've been here since my surgery and I've gotten spoiled-- they really lifted my spirits! While they were here we had a baby shower for Allison, my oldest daughter. That was a perfect thing to take my mind off myself for awhile-- all the cute little baby things, and getting to see lots of my friends.
Now it's back to everyday life-- which is actually quite full at the moment. Two of my children have moved back home and life is anything but dull here. However, that deserves it's own post, so more on that later.
Many thanks to all of my friends who keep in touch by mail or text or email. I'm not always good at responding, but the fact you are thinking about me means so very much. Your prayers and good wishes keep me going!
My white cell count last week was 1.1 and had only risen to 1.3 this week. And apparently there's nothing I can do or not do to influence it. Diet, exercise, etc. have no bearing on it. My body just has to do the work. So now the plan is to wait till next week and try again. My oncologist is optimistic that next week will work. And apparently there's a shot of something they can give me that will help the white blood count but the catch is they have to do it after chemo. Then once they've given me the shot (which will have side effects, my brother tells me...), I have to wait 2 more weeks for chemo. So at least there's a plan, but it's definitely trying my patience. Just feel like I'm in limbo here, waiting.
Meanwhile, my hair is falling out faster than I can sweep it up. SIGH... I know back in July I said I could deal with it if that came to pass, but it's still really difficult, especially since my oncologist said it probably would thin some, but not all fall out. Well, I guess there's still hope for that-- maybe it's just really thinning! I'll keep you posted on that. (And all this hair loss with only one chemo treatment so far!)
On a personal note, Adam & Jodi (my son & daughter-in-law who live in VA), were here for 10 days and just left on Monday. Was sad to see them go. This is the third thime they've been here since my surgery and I've gotten spoiled-- they really lifted my spirits! While they were here we had a baby shower for Allison, my oldest daughter. That was a perfect thing to take my mind off myself for awhile-- all the cute little baby things, and getting to see lots of my friends.
Now it's back to everyday life-- which is actually quite full at the moment. Two of my children have moved back home and life is anything but dull here. However, that deserves it's own post, so more on that later.
Many thanks to all of my friends who keep in touch by mail or text or email. I'm not always good at responding, but the fact you are thinking about me means so very much. Your prayers and good wishes keep me going!
Wednesday, August 19, 2009
A Reprieve
Today was supposed to be the first day of my second chemotherapy cycle, but I got a reprieve. I showed up, got hooked up, and the first thing they do is check my blood (After the poking and prodding to find the port, and inserting the needle, I might add...). Anyway, the blood results came back and my white cell count is very low so the doctor decided to push back my next treatment for a week. That will give my body another week to recover. So they unhooked everything and I came home! It's kind of like getting a snow day-- today is free but I know I'll just have to make it up on the back end.
Please keep prayi ng...
Please keep prayi ng...
Saturday, August 15, 2009
Where is Pam?
Where is Pam? Right here. Betwixt and between. Not well, but not really sick. Not bedridden, but still pretty attached to the couch. Not in pain, but still taking meds. Not really hungry, but trying to eat. And pretty much clueless from one day to the next what to expect, which makes life frustrating for me and my family.
I would consider myself mostly healed from the surgery. I get twinges here and there, but all my incisions are healed enough so I can finally wear proper undergarments. (too much information? Sorry, but you have no idea how unsettling it is for a 54-year-old woman forced to go braless. So I just didn't "go." I'll leave it at that!). But I am changed in so many ways-- frustrating ways, and only time will tell which changes are temporary and which are not.
Before the surgery, I lived to read. It was my every-spare-moment retreat-- newwspapers, magazines and sometimes 2-3 books a week. Since the surgery, I haven't read more than a short article. I just don't seem to have any powers of concentration. Even People magazine has lost its tawdry appeal! And BS (Before Surgery), my default TV channel was Fox news. If I was home, or working in my office, it was on. I prided myself on being able to carry on a conversation with anyone on current/political events. Now my default channel is Food Network, which is ironic since food has become more of a burden than a joy to me. (And if you know me well, you know I lived to eat before surgery. I was all about the food!).
And independence? I'm extremely independent. I enjoy my "alone time," and could entertain myself quite well before surgery. I loved evenings when Charlie was out refereeing and I could cook or not, read a book and enjoy the quiet. Now, if he leaves me alone more than 2 hours I'm a whiny mess. In short, I don't know who I've become and I don't know what to do with myself!
My first chemo treatment came and went last week and I think I tolerated it fairly well. A couple of minor side effects during the treatment-- like not being able to drink anything cold-- were bothersome, but not overwhelming. The treatment-- where I actually went back and forth to the hospital-- was 3 days. Then the following 2 days I just decorated the couch and felt like crap. At least now I know what to expect-- one down and 11 more to go.
And my second cancer-- the melanoma? My oncologist and my new ENT doctor will consult and decide when best to interrupt my chemo treatment so the melanoma can be removed. It will be an outpatient surgery but will require general anesthesia (yet again!). My oncologist wanted me to get several treatments "under my belt" first, so it probably won't happen till early fall. The procedure to remove it will involve pulling skin from the back of my ear-- right, that's what I said-- THERE IS NO SKIN BEHIND MY EAR-- are you crazy? Doctor says will change the curvature of ear a little but won't be hugely noticeable. Yeah, right, unless I lose all my hair from chemo. Then I'll just be the bald whacko with the weird ear. Give me a patch and I can pass as a pirate!!!
But enough of my whining for now. I'm sure they'll eventually get my medications regulated and I can feel more "even," and leave my poor pharmacist brother-in-law alone. I must call him twice a week in a dither over my meds. God bless him for his endless patience!
Please keep praying for me-- this "in between" time is so frustrating. I'm me, but I'm not, and I just don't know where to go from here. I call it the "smoke & mirrors" syndrome. I look the same on the outside, but feel like a totally different person on the inside. I'm still not much for talking on the phone and communicate best via print. Thank goodness for texting or I wouldn't even "talk" to my kids.
It's not been an easy journey by any means, and it's far from over, but considering the alternative, I'm thrilled to have the chance to take it. I'll keep plugging along, knowing that God "has his arms around me," in the encouraging words of my friend, Jim. Coupled with the prayers and support of all my fabulous friends, I'm going to be a tough act to beat!
I would consider myself mostly healed from the surgery. I get twinges here and there, but all my incisions are healed enough so I can finally wear proper undergarments. (too much information? Sorry, but you have no idea how unsettling it is for a 54-year-old woman forced to go braless. So I just didn't "go." I'll leave it at that!). But I am changed in so many ways-- frustrating ways, and only time will tell which changes are temporary and which are not.
Before the surgery, I lived to read. It was my every-spare-moment retreat-- newwspapers, magazines and sometimes 2-3 books a week. Since the surgery, I haven't read more than a short article. I just don't seem to have any powers of concentration. Even People magazine has lost its tawdry appeal! And BS (Before Surgery), my default TV channel was Fox news. If I was home, or working in my office, it was on. I prided myself on being able to carry on a conversation with anyone on current/political events. Now my default channel is Food Network, which is ironic since food has become more of a burden than a joy to me. (And if you know me well, you know I lived to eat before surgery. I was all about the food!).
And independence? I'm extremely independent. I enjoy my "alone time," and could entertain myself quite well before surgery. I loved evenings when Charlie was out refereeing and I could cook or not, read a book and enjoy the quiet. Now, if he leaves me alone more than 2 hours I'm a whiny mess. In short, I don't know who I've become and I don't know what to do with myself!
My first chemo treatment came and went last week and I think I tolerated it fairly well. A couple of minor side effects during the treatment-- like not being able to drink anything cold-- were bothersome, but not overwhelming. The treatment-- where I actually went back and forth to the hospital-- was 3 days. Then the following 2 days I just decorated the couch and felt like crap. At least now I know what to expect-- one down and 11 more to go.
And my second cancer-- the melanoma? My oncologist and my new ENT doctor will consult and decide when best to interrupt my chemo treatment so the melanoma can be removed. It will be an outpatient surgery but will require general anesthesia (yet again!). My oncologist wanted me to get several treatments "under my belt" first, so it probably won't happen till early fall. The procedure to remove it will involve pulling skin from the back of my ear-- right, that's what I said-- THERE IS NO SKIN BEHIND MY EAR-- are you crazy? Doctor says will change the curvature of ear a little but won't be hugely noticeable. Yeah, right, unless I lose all my hair from chemo. Then I'll just be the bald whacko with the weird ear. Give me a patch and I can pass as a pirate!!!
But enough of my whining for now. I'm sure they'll eventually get my medications regulated and I can feel more "even," and leave my poor pharmacist brother-in-law alone. I must call him twice a week in a dither over my meds. God bless him for his endless patience!
Please keep praying for me-- this "in between" time is so frustrating. I'm me, but I'm not, and I just don't know where to go from here. I call it the "smoke & mirrors" syndrome. I look the same on the outside, but feel like a totally different person on the inside. I'm still not much for talking on the phone and communicate best via print. Thank goodness for texting or I wouldn't even "talk" to my kids.
It's not been an easy journey by any means, and it's far from over, but considering the alternative, I'm thrilled to have the chance to take it. I'll keep plugging along, knowing that God "has his arms around me," in the encouraging words of my friend, Jim. Coupled with the prayers and support of all my fabulous friends, I'm going to be a tough act to beat!
Wednesday, August 5, 2009
1 DOWN!! 35 to go...
This is Pam's second son, Adam, and I am writing in lieu of Pam. I am making her dictate though, so still her words.
"I had my first chemotherapy today. Arrived early (thanks Chuck) at 10am, and left at 4pm. Currently knee deep in being overwhelmed (i.e. Pity party for 1). Was hooked up to pump machines for 3 hours of that time. At the end of the time, they sent me home with a new addition. My very own chemo pump in a decorative navy blue (shoot me if caught in public with it) fanny pack!!! It helps me maintain a constant dose of the drugs. I am sure I will get used to it, but I did mention that it is a FANNY PACK?!?!?! I return tomorrow for another 2 hours hooked up to drugs in a room with very comfy chairs. During which time I get more machines and drugs, then repeat FANNY PACK procedure for another day. On the following day (Friday), I go back for a short visit to be disengaged from my chemo pump and AWESOME FANNY PACK!!! Did I mention a fanny pack? Rest for 10 - 12 days without touching ice cubes or anything cold, and start it all over again. It will lead me through to complete a total of 12 sessions in 6 months time.
"All of the possible/probable side effect instruction was a bit daunting - - it took Charlie, Adam, and myself to try and understand.
"But far more overwhelming was the company during the 3 hour medicine hookup session. The "chemo room" consists of 8 lazy-boy chairs that were all full today (and two others in a separate room) --people with cancers far more advanced than mine, and rougher treatments. One lady is on the same 3-day regimen, but her total time will be 23 hours in the chair/hooked up in the "chemo room". And there was lots of discussion among the fellow patients about wigs, treatments, and surgeries - - all of which sounded worse and far scarier than my situation. I am very grateful, but overwhelmed. Please include these people, their familes, and caregivers in your prayers as well.
"On a lighter note, my son Adam (who lives in VA) surprised me yesterday, LITERALLY, when he stepped from the dining room to the family room. All of my children have been wonderful and supportive, but if you know Adam, you know he brings the "goofy" with him, and he has lifted all of our spirits.
"Thank you for your continued prayers and support. They keep me going."
Based on Pam's dictation, and extreme following of quotation mark usage according to MLA guidelines, the above are Pam's words, thoughts, and feelings. On a separate note, (this is Adam) my siblings and father would like to thank everyone who has sent kind words, thoughts, prayers, gifts, food, well-wishes, and good feelings towards us and Pam. We are so blessed and comforted by the outpouring of love and generosity from so many people we know and love, and even those we do not know who are praying for our entire family. Thank you from the bottom of our hearts, and God Bless!!!
The above is an excerpt from the future book, "The Journey Towards the New Me" by Pam Riddell
"I had my first chemotherapy today. Arrived early (thanks Chuck) at 10am, and left at 4pm. Currently knee deep in being overwhelmed (i.e. Pity party for 1). Was hooked up to pump machines for 3 hours of that time. At the end of the time, they sent me home with a new addition. My very own chemo pump in a decorative navy blue (shoot me if caught in public with it) fanny pack!!! It helps me maintain a constant dose of the drugs. I am sure I will get used to it, but I did mention that it is a FANNY PACK?!?!?! I return tomorrow for another 2 hours hooked up to drugs in a room with very comfy chairs. During which time I get more machines and drugs, then repeat FANNY PACK procedure for another day. On the following day (Friday), I go back for a short visit to be disengaged from my chemo pump and AWESOME FANNY PACK!!! Did I mention a fanny pack? Rest for 10 - 12 days without touching ice cubes or anything cold, and start it all over again. It will lead me through to complete a total of 12 sessions in 6 months time.
"All of the possible/probable side effect instruction was a bit daunting - - it took Charlie, Adam, and myself to try and understand.
"But far more overwhelming was the company during the 3 hour medicine hookup session. The "chemo room" consists of 8 lazy-boy chairs that were all full today (and two others in a separate room) --people with cancers far more advanced than mine, and rougher treatments. One lady is on the same 3-day regimen, but her total time will be 23 hours in the chair/hooked up in the "chemo room". And there was lots of discussion among the fellow patients about wigs, treatments, and surgeries - - all of which sounded worse and far scarier than my situation. I am very grateful, but overwhelmed. Please include these people, their familes, and caregivers in your prayers as well.
"On a lighter note, my son Adam (who lives in VA) surprised me yesterday, LITERALLY, when he stepped from the dining room to the family room. All of my children have been wonderful and supportive, but if you know Adam, you know he brings the "goofy" with him, and he has lifted all of our spirits.
"Thank you for your continued prayers and support. They keep me going."
Based on Pam's dictation, and extreme following of quotation mark usage according to MLA guidelines, the above are Pam's words, thoughts, and feelings. On a separate note, (this is Adam) my siblings and father would like to thank everyone who has sent kind words, thoughts, prayers, gifts, food, well-wishes, and good feelings towards us and Pam. We are so blessed and comforted by the outpouring of love and generosity from so many people we know and love, and even those we do not know who are praying for our entire family. Thank you from the bottom of our hearts, and God Bless!!!
The above is an excerpt from the future book, "The Journey Towards the New Me" by Pam Riddell
Friday, July 31, 2009
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