So my TA DA moment came a little later - Friday night instead of Thursday. It is taking a little longer each session to get there....but at least I do get there!
On Saturday morning I woke up and had a nasty bruise on my leg. It looked like I took a fastball to my right upper thigh. I sat there for a good 15 minutes trying to figure out what I did ....it was definitely too nasty of a bruise to have forgotten the circumstances. But when I went over the last 24 hrs (bed, rest, more bed, more resting....) there was nothing that lept out that would have told me I did something that would have caused trauma. My mom urged me to call the Dr. I thought, well I will wait till Monday when I can call the nurses, I hate disturbing the on call weekend Dr. It didn't seem like that big of a deal. Monday morning came and I thought, eh...I will just tell Dr Kurup about the bruise when I go in this Thursday...not that big of a deal right? Then when I got in the shower I saw more bruises, all over...and they were ugly. This was my first moment of panic. I knew that this meant that my blood wasnt clotting....and that it could mean I was bleeding. I called the nurse hotline and Julie called me back. I explained the big traumatic bruises all over my legs. She said that would be a sign of a low platelet count. Your platelets are what clot your blood. From this sign alone (lots of nasty bruises) she did not think that I was at such a low count that I would need an blood tranfusion. She also explained that I was on the cusp when I went in for treatment last time: my count was 97. They want you to be at 100 to get chemo. A healthy person is at 150. She estimated I was low...maybe in the 20s, but I would have to be below 10 to get a transfusion. She also said, well you aren't bleeding from anywhere so....and I interupted her and said, well, every time I blow my nose blood comes out. YOU ARE GETTING BLOODY NOSES?! she said with a slight hint of panic. No No, nothing gushing blood....blood is just coming out when I blow my nose. Ok, that is better...it would have been a bad sign if you were bleeding profusely anywhere, like a nose bleed that won't stop. I said, no nothing like that. She said if I was scared or just needed to know, I could come in and they would run the numbers on my blood. I said I felt more reassured now so I would just wait until Thursday for my next chemo round, but what other signs should I look for if something has taken a turn for the worse? She said, I don't want to freak you out, but if you start getting bad headaches it could mean that you are bleeding in your brain, so that would be a bad sign. Gotcha, will call if anything like that happens. She also said that since my count was definitely low right now.....it may not get up above 100 by this Thursday and I wouldn't be allowed to get chemo.
So today, we went in....so torn on whether I wanted to go through with chemo or whether I would get a free pass for one more good week. On one hand, one more good week - YAY! On the other hand, this now turns our calendar into a total closterf*&^ and we have reschedule everything go forward for the next month since our entire lives revolve around stupid chemo and the "bad weeks".
We had Karen again (yay!) and we started to tell her about the horrible week we had (so much pain! bruising all over!). Dr. Kurup came in when Karen was starting to get my IV ready, so Karen left and we started over again on the symptoms. I showed Dr Kurup my bruises and she was pretty horrified - that is not good, we need to get you tested to see if your numbers are even going to be good enough this round....let me get Karen back in here. Karen came back, took a long time to find a vien....found one, got some blood. Now normally you go straight to the infusion room and get set up. But they were not convinced that was going to happen for me this round, so we waited in the exam room. About 10 minutes went by and a medical asst dropped off the lab numbers outside our room. Bob jumped up to see what they were. Platelet count 76...no go. Karen came back in, laughed that we had peeked, got Dr Kurup to come in and give the official - go home, come back next week.
So here I am now....denied chemo for this week....which of course I LOVE but also hate at the same time since now that pushes everything back a week. Oh well, have to take the good with the bad!
I'm off to go see Ella....she is going to work on getting my platelet count higher. Then we will steal away tomorrow for a (hopefully) sunny weekend at the beach. It feels like I got a free pass, get out of jail free card. :)
Thursday, July 21, 2011
Thursday, July 14, 2011
The rollercoaster
First of all, I am so sorry I haven't posted anything in 3 weeks. Everything is fine, I haven't been sicker than normal. It was for purely selfish reasons that I haven't posted anything. As you know by now, I normally don't post anything on a "bad" week (spend most of that time in the fetal position - just kidding! kind of) and my "good" weeks usually start a week after chemo, the following Thursday, where I would try to post something as soon as possible to let you know that I made it alive through another session.
It used to be like a light switch on Thursday morning, I would wake up and TA DA I felt so much better all the sudden. Unfortunately after chemo June 23rd, my next Thursday didn't come with a TA DA moment. I woke up not feeling crummy, but not feeling good either. It was the 30th, right before the July 4th weekend and we packed up the car and headed to the beach. The weather in Portland this June had been less than phenomenal....overcast, gloomy, colder than usual. But we had high hopes for July. When we got to the beach it was perfect weather....sunny, not a cloud in the sky...warm, amazing. Friday morning, waking up at the beach I finally had my TA DA feel better moment. Bob, Thomas and I headed out for a morning walk to get some coffee. Our walk to coffee is on a path that is just over the dunes overlooking the ocean. It's a beautiful walk in any weather, but this morning it was PERFECT. Sunny, warm, light breeze.....spectacular view of the water. As I was walking along, feeling good for the first time in a week, looking out at the ocean, looking down at Thomas in his stroller, holding Bob's hand....I felt so happy. And it was the first time in over 4 months I felt like that. Now, I don't mean that to sound as depressing as it does. I think most of you know me well and know that I am a pretty all around happy, glass half full kind of girl. But for the past 4 months I have been dragging around this blanket of worry. It's heavy, thick, itchy wool blanket...I never have anywhere to put it down. It's covered with all the "what if's" that creep up on me in dark moments. And I have been happy in the past 4 months, even through all this garbage....but in every happy moment I was still holding onto that stupid blanket. I haven't realized I was carrying this blanket all along. I only noticed it a couple of months ago. I was at Target with Thomas on a day that I thought I was feeling good, then realized halfway through I wasn't feeling all that hot. But I trudged ahead anyway, bound and determined to make it seem like I was ok. I was dragging my feet, pushing Thomas in a cart, trying to convince myself that I wasn't too tired for this, when I saw 2 college age girls shopping. They were shopping for a party they were going to that night, giggling, talking. And it just hit me like a 2x4, they were so carefree.......and I was not. And I looked down and realized I had that stupid blanket. And I wasn't sure if I was ever going to get rid of it again.
When I was walking along the dunes on a that perfect sunny day with Bob and Thomas, feeling good....happy, I looked down and realized I didn't have that blanket anymore. I know I hadn't permanently lost it, but it just felt so good to not be carrying it anymore. I felt...normal. And I didn't want to go back to the house and write about cancer or chemo or side effects or hair loss or white blood cell counts or BLARG any of it! I just wanted to feel normal for a little bit longer. So I did. I completely ignored my emails, I didn't post anything that whole week at the beach house and I spent all my free moments playing in the sand with Thomas, sitting under an umbrella in the backyard out of the wind, walking on the beach, talking with my family. Just being normal. Again. For a week. It was wonderful.
Unfortunately, nirvana doesn't last forever. I knew I would pick up the blanket again. We left the beach on Wednesday night to get home in time for Thursday morning chemo session on July 7th. I was sad to leave the beach behind.
But before I go into that session, I'll back track to the one before that I didn't post about. It was significant on a few levels. June 23rd was my last infusion of Adriamycin & Cytoxan (A & C). I woke up that Thursday and had a huge lump in my throat and immediately felt nauseous. Not that I am ever super jazzed to go and get chemo, but this time I just really really really really didn't want to go in. If I was 6 years old, I would have hidden under my bed or in my closet and hoped that no one would find me. But I don't fit under my bed anymore and my closet is a lousy hiding place, so I took an Ativan for the emotional nausea and off we went.
It went as it usually does. We drove a few miles down the road to the hospital, went up to the 2nd floor and checked in at the Oncology and Hematology Clinic. After a couple minutes a medical assistant pokes their head out - "Molly?" - and we all gather our things up and head into the clinic. There is a large room in the center with about 6 big chairs. They take you in, weigh you, take your blood pressure and your temperature, record it all then take you to an exam room and leave you for the chemo nurse. They also give you an ID bracelet which everyone is supposed to check and double check before they give you any medication.
There are about 4 chemo nurses in the infusion room, but you are assigned to one nurse for your infusion. Before your chemo nurse comes in the exam room, you know who are getting because they write her name on your ID bracelet just in case you forget her name and need something. I looked down - Karen - was written in handwriting on my bracelet. We had Karen the time before, and I like her a lot. She's been a chemo nurse for 25 years - so in short she is a total saint. But I got nervous. The last time Karen had a hard time finding a vein and I got "the talk" again about getting a port. I was already very nervous and nauseous. I couldn't take another port talk. I had hydrated up BIG TIME in the last 48 hours which is supposed to make your veins nice and plump...and easier to find.
Karen came in the room with her little kit (it looks like those plastic handled cubbies that you get when you live in the dorms and need to take your shampoo and stuff to the communal showers....at least that is what I think every time). In this kit is all of her tools to get an IV started and pull blood to "run my numbers". It starts the same every time - how are you? any new symptoms from last time? I told her I was nauseous and had taken an ativan before leaving the house. Karen nodded. She knew. She gently took my left arm and patiently looked for a vein. It took a while....they were all hiding like the 6 year old me. There was not talk of ports or not drinking enough water. She was very patient, eventually found "a good one", put the IV in, drew some blood, squeezed my hand and said see you out there.
After this we wait for about 5 minutes for the numbers to come back on my blood. I am sure they look at tons of things (they certainly run enough on the bloodwork, I asked for the labs one time) but all I they talk about is your white blood cell count. If your white blood cell count is high enough, you can more forward with chemo. White blood cells are what is produced in your bone marrow and these are your fighter cells. They are the ones that fend off attacks, infections, etc. Chemo decimates your white blood cell count, which is why I was getting a white blood cell booster shot every Friday after Chemo...to make sure my body rebuilt itself again after the chemo wiped all the white blood cells out.
Dr. Kurup comes into the exam room after the numbers are run, yes everything looks great. Really good. In fact, so good she kind of can't believe it. When I came in "healthy" before chemo my white blood cell count was 5. The next week after chemo it was 11. The next week it was 13. This time it was THIRTY. This is very very good. So good that they would not give me another white blood cell booster shot after this chemo round. We talked about this for a bit. The only worry is that since they are not giving me another booster shot, the numbers could go down to very low levels and make it that I could not get chemo again in 2 weeks. But Dr Kurup thought that was a long shot since they had been building every week.
We also talked about my anemia...which Dr Kurup disagreed with Dr Molly. She did not think I had become anemic since my numbers were just so good (that would be red blood cell count, not white). And while it was not impossible, she didn't think it was likely. Dr Molly still disagrees with Dr Kurup on this one. I know my own body, I know what I felt like. I was anemic. And ever since watching my iron intake I haven't had any more symptoms that were similar.
After we were "cleared" we headed out into the infusion room. It's a room of about 30(?) Lazy Boy recliners that are lined up against the wall. The nurses station is in the middle of the room, surrounded by glass so that they can monitor us. On this session, it was just Bob and I. We did our usual - turn the chairs around so that they faced the window, not the nurses station - and got settled.
For A & C you always start with anti nausea drugs and steroids. After that is done (about 30 - 45 minutes), the nasty A starts. I was nervous. I felt like I was going to throw up once the steroid drip was done. Adriamycin is a particularly nasty drug. I asked Karen before if there was another chemo that was worse than A. She thought for a minute and said, well there are few others that tie, but nothing is worse. It's pretty nasty.
It is administered in a large syringe (not a drip bag on an IV pole like everything else). The nurse needs to sit with you and hand administer it to make sure it doesn't get out of the IV. This whole process is totally nerve wracking for me. It takes about 15 minutes.
Before Karen came over with the A, I told Bob - ok, it's time for the A, you need to distract me and just talk to me the entire time, ok? He nodded. Karen come over quietly with the large syringes and hid them underneath a towel. She started chatting with me, laid another towel over my IV, and went to work. She didn't say anything about it, but she was hiding it from me so that I didn't have to watch her put it into my IV. Bob didn't even get a chance to get one word in, Karen and I chatted the entire time. Then fifteen minutes was up, she was done, gave me a wink, squeezed my arm and started the C drip. I could relax.
The C takes a little under 2 hours, so we sat there, read magazines, passed the time. When the drip was done, the machine on the IV poll beeps and Karen came over, unhooked me, gave me a big hug and said - You did GREAT. She knew I was a total basket case the entire time. She never addressed it, just reassured me, tried to make me comfortable so that I could get through it. And after that I was officially HALF WAY DONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
The bad week was the usual, it seemed to be a little better than most. When Dr. Kurup asked me about it 2 weeks later I couldn't even remember anything significant about it, to which she replied "well THAT'S a good sign!". They all kind of blur together now. A lot of sleeping. A lot of laying down. Nothing too exciting.
My last round of chemo was a week ago on July 7th. It was the start of Taxol infusions. Just 4 T infusions and I am done.....
Again, business as usual. Although this time Dr Kurup didn't wait for my blood to be drawn to talk to me. We chatted about Taxol and the side effects (aches and pains). She said if you get them, take some advil. We then left for the infusion room and set up shop.
Karen didn't come over for a while. When she finally did she look a little worried and asked me if I had gotten a fever over the past 2 weeks? No. "OK, well your numbers were not good so I just had to track down Dr Kurup to see if we would even give you chemo today. She said we could give you chemo today but you will have to come back tomorrow for a white blood cell booster shot" (originally I would not have had to do this since that shot is really only needed for A, not T). I said "um, ok. what was my white blood cell count?" karen replied - "One." ouch. It had gone from 30 the time before to 1. I asked Karen if there was anything I could have done, and she said no- it just seems that my marrow is very sensitive. But it does respond to the shot, so that is good.
For the T, they give you a much weaker anti nausea since T does not typically cause nausea. Karen started the drip of the anti nausea / steroid and talked to me about the side effects of T. It can sometimes cause an allergic reaction when administered so watch out for sharp pains in your back or shortness of breath and tell me right away. ok. Because of the allergic reaction they also give you a drip of benadryl. After the benadryl I pretty much passed out and took a 2 hour nap. T takes about 4 hours to administer. I woke up, my mom had gotten us lunch, started to eat my sandwich and JAB sharp pain in the back. My mom got Karen's attention, she came over, immediately stopped the drip. After a couple minutes checked in again - how do you feel now? Fine, no more sharp pains. Ok. Started the drip back up. A few minutes passed and then all the sudden I started wheezing...felt like asthma attack. This time we grabbed the nearest nurse who stopped the drip again and asked who my Dr was. Dr Kurup and Karen both arrived at the same time. Apparently this is not super standard. Karen looked worried. Dr Kurup said that I could either get more steroids or get more benadryl and try starting again. Karen and I are on the same page, she gave me more benadryl. zzzzzzzzzzzzzzzzzzzzzzzz I took another 2 hour nap, did not have any more reactions. But was pretty much comatose. 2 drip bags of benadryl in 4 hours and Karen was suggesting I get a wheel chair to leave. It was now 5 o' clock and we were just finished with the T. We had been there since 10am. I texted Ella and let her know I would not be coming for acupuncture since I could barely keep my eyes open. She texted back and said no worries, come tomorrow...and remember to take your epsom salt bath tonight. Crap. I forgot about the bath. All I wanted to do was crawl in bed. But I heard Ella's voice when I got home so immediately ran a bath and I will have to say immediately felt better. Had dinner with Bob and my parents, went straight to bed. Where I just stared at the ceiling all night. I got up Friday morning and had ENERGY (where did this come from on no sleep?) so went and ran some errands, got my white cell booster shot, went in and saw Ella for my appointment. Ella took my pulse and was said WHOA you have a lot of steroids pumping through your veins right now (ah....that is where the energy came from). I generally felt pretty good and was very optimistic. Maybe I won't have any side effects from the T?! I "woke" up Saturday morning after no sleep again. Took a couple naps. Hmmmm, don't feel that bad. This round may not be that bad. Then Saturday night the aches starting creeping in. I felt like I had the flu. I took some advil, took a beer into the bathtub and hoped that would make it better. Nothing. Not a dent. I ached all over. Went to bed. Again little sleep. Sunday I felt like I had been in car wreck. My entire body throbbed in pain. Back to bed. More advil. More nothing. Eventually the pain just settled like sand into the lower half of my body. Sunday evening I felt like I had two broken legs. I was having a hard time walking. My mom urged me to call the Dr. No, no....I will wait until tomorrow...maybe this will pass. 9am Monday morning, two broken legs still throbbing, I called the nurse line. Nurse Julie called me back right away. HELP I feel like I have 2 broken legs and advil is doing nothing. She asked if I had anything left over from surgery. YES I have vicodin! She said ok, start there, take those and if that doesn't work then call me back and we will prescribe something stronger. I left this conversation with a few thoughts - first of all, I HAD VICODIN THE ENTIRE TIME AND COULD HAVE TAKEN IT? and second of all, what do you mean "if that doesn't work"? %$^*& I took 2 vicodin and settled back into bed. Within a half hour the pain was starting to get better. Within an hour it was GONE COMPLETELY. Bob came in and checked on me, concerned that I was still in pain, did I want to call Ella and make an appt? I didn't even open my eyes, just groggily said "oh no. I feel gooooooooooood. the pain is alllllllllllllllllll gone." He laughed and said he was glad the pain meds were working and I fell into a deep and very yummy sleep for the first time in days. The rest of Monday was a vicodin haze.
Tuesday I was hopeful that maybe I didn't need vicodin anymore? Got up made breakfast. Dammit. Pain starting to creep back up the legs. Back on the vicodin. Tuesday wasn't as fun as Monday. I felt groggy, didn't want to be taking these anymore. Still needed them. Napped all day.
Finally yesterday I got off the vicodin. It took a while to shake that medicated feeling. The pain was just tingly, not too bad. Not bad enough for vicodin. I woke up today and the tingling was gone completely. I was just *sigh* tired. Still am. Hoping for my TA DA feel good moment tomorrow morning.
It used to be like a light switch on Thursday morning, I would wake up and TA DA I felt so much better all the sudden. Unfortunately after chemo June 23rd, my next Thursday didn't come with a TA DA moment. I woke up not feeling crummy, but not feeling good either. It was the 30th, right before the July 4th weekend and we packed up the car and headed to the beach. The weather in Portland this June had been less than phenomenal....overcast, gloomy, colder than usual. But we had high hopes for July. When we got to the beach it was perfect weather....sunny, not a cloud in the sky...warm, amazing. Friday morning, waking up at the beach I finally had my TA DA feel better moment. Bob, Thomas and I headed out for a morning walk to get some coffee. Our walk to coffee is on a path that is just over the dunes overlooking the ocean. It's a beautiful walk in any weather, but this morning it was PERFECT. Sunny, warm, light breeze.....spectacular view of the water. As I was walking along, feeling good for the first time in a week, looking out at the ocean, looking down at Thomas in his stroller, holding Bob's hand....I felt so happy. And it was the first time in over 4 months I felt like that. Now, I don't mean that to sound as depressing as it does. I think most of you know me well and know that I am a pretty all around happy, glass half full kind of girl. But for the past 4 months I have been dragging around this blanket of worry. It's heavy, thick, itchy wool blanket...I never have anywhere to put it down. It's covered with all the "what if's" that creep up on me in dark moments. And I have been happy in the past 4 months, even through all this garbage....but in every happy moment I was still holding onto that stupid blanket. I haven't realized I was carrying this blanket all along. I only noticed it a couple of months ago. I was at Target with Thomas on a day that I thought I was feeling good, then realized halfway through I wasn't feeling all that hot. But I trudged ahead anyway, bound and determined to make it seem like I was ok. I was dragging my feet, pushing Thomas in a cart, trying to convince myself that I wasn't too tired for this, when I saw 2 college age girls shopping. They were shopping for a party they were going to that night, giggling, talking. And it just hit me like a 2x4, they were so carefree.......and I was not. And I looked down and realized I had that stupid blanket. And I wasn't sure if I was ever going to get rid of it again.
When I was walking along the dunes on a that perfect sunny day with Bob and Thomas, feeling good....happy, I looked down and realized I didn't have that blanket anymore. I know I hadn't permanently lost it, but it just felt so good to not be carrying it anymore. I felt...normal. And I didn't want to go back to the house and write about cancer or chemo or side effects or hair loss or white blood cell counts or BLARG any of it! I just wanted to feel normal for a little bit longer. So I did. I completely ignored my emails, I didn't post anything that whole week at the beach house and I spent all my free moments playing in the sand with Thomas, sitting under an umbrella in the backyard out of the wind, walking on the beach, talking with my family. Just being normal. Again. For a week. It was wonderful.
Unfortunately, nirvana doesn't last forever. I knew I would pick up the blanket again. We left the beach on Wednesday night to get home in time for Thursday morning chemo session on July 7th. I was sad to leave the beach behind.
But before I go into that session, I'll back track to the one before that I didn't post about. It was significant on a few levels. June 23rd was my last infusion of Adriamycin & Cytoxan (A & C). I woke up that Thursday and had a huge lump in my throat and immediately felt nauseous. Not that I am ever super jazzed to go and get chemo, but this time I just really really really really didn't want to go in. If I was 6 years old, I would have hidden under my bed or in my closet and hoped that no one would find me. But I don't fit under my bed anymore and my closet is a lousy hiding place, so I took an Ativan for the emotional nausea and off we went.
It went as it usually does. We drove a few miles down the road to the hospital, went up to the 2nd floor and checked in at the Oncology and Hematology Clinic. After a couple minutes a medical assistant pokes their head out - "Molly?" - and we all gather our things up and head into the clinic. There is a large room in the center with about 6 big chairs. They take you in, weigh you, take your blood pressure and your temperature, record it all then take you to an exam room and leave you for the chemo nurse. They also give you an ID bracelet which everyone is supposed to check and double check before they give you any medication.
There are about 4 chemo nurses in the infusion room, but you are assigned to one nurse for your infusion. Before your chemo nurse comes in the exam room, you know who are getting because they write her name on your ID bracelet just in case you forget her name and need something. I looked down - Karen - was written in handwriting on my bracelet. We had Karen the time before, and I like her a lot. She's been a chemo nurse for 25 years - so in short she is a total saint. But I got nervous. The last time Karen had a hard time finding a vein and I got "the talk" again about getting a port. I was already very nervous and nauseous. I couldn't take another port talk. I had hydrated up BIG TIME in the last 48 hours which is supposed to make your veins nice and plump...and easier to find.
Karen came in the room with her little kit (it looks like those plastic handled cubbies that you get when you live in the dorms and need to take your shampoo and stuff to the communal showers....at least that is what I think every time). In this kit is all of her tools to get an IV started and pull blood to "run my numbers". It starts the same every time - how are you? any new symptoms from last time? I told her I was nauseous and had taken an ativan before leaving the house. Karen nodded. She knew. She gently took my left arm and patiently looked for a vein. It took a while....they were all hiding like the 6 year old me. There was not talk of ports or not drinking enough water. She was very patient, eventually found "a good one", put the IV in, drew some blood, squeezed my hand and said see you out there.
After this we wait for about 5 minutes for the numbers to come back on my blood. I am sure they look at tons of things (they certainly run enough on the bloodwork, I asked for the labs one time) but all I they talk about is your white blood cell count. If your white blood cell count is high enough, you can more forward with chemo. White blood cells are what is produced in your bone marrow and these are your fighter cells. They are the ones that fend off attacks, infections, etc. Chemo decimates your white blood cell count, which is why I was getting a white blood cell booster shot every Friday after Chemo...to make sure my body rebuilt itself again after the chemo wiped all the white blood cells out.
Dr. Kurup comes into the exam room after the numbers are run, yes everything looks great. Really good. In fact, so good she kind of can't believe it. When I came in "healthy" before chemo my white blood cell count was 5. The next week after chemo it was 11. The next week it was 13. This time it was THIRTY. This is very very good. So good that they would not give me another white blood cell booster shot after this chemo round. We talked about this for a bit. The only worry is that since they are not giving me another booster shot, the numbers could go down to very low levels and make it that I could not get chemo again in 2 weeks. But Dr Kurup thought that was a long shot since they had been building every week.
We also talked about my anemia...which Dr Kurup disagreed with Dr Molly. She did not think I had become anemic since my numbers were just so good (that would be red blood cell count, not white). And while it was not impossible, she didn't think it was likely. Dr Molly still disagrees with Dr Kurup on this one. I know my own body, I know what I felt like. I was anemic. And ever since watching my iron intake I haven't had any more symptoms that were similar.
After we were "cleared" we headed out into the infusion room. It's a room of about 30(?) Lazy Boy recliners that are lined up against the wall. The nurses station is in the middle of the room, surrounded by glass so that they can monitor us. On this session, it was just Bob and I. We did our usual - turn the chairs around so that they faced the window, not the nurses station - and got settled.
For A & C you always start with anti nausea drugs and steroids. After that is done (about 30 - 45 minutes), the nasty A starts. I was nervous. I felt like I was going to throw up once the steroid drip was done. Adriamycin is a particularly nasty drug. I asked Karen before if there was another chemo that was worse than A. She thought for a minute and said, well there are few others that tie, but nothing is worse. It's pretty nasty.
It is administered in a large syringe (not a drip bag on an IV pole like everything else). The nurse needs to sit with you and hand administer it to make sure it doesn't get out of the IV. This whole process is totally nerve wracking for me. It takes about 15 minutes.
Before Karen came over with the A, I told Bob - ok, it's time for the A, you need to distract me and just talk to me the entire time, ok? He nodded. Karen come over quietly with the large syringes and hid them underneath a towel. She started chatting with me, laid another towel over my IV, and went to work. She didn't say anything about it, but she was hiding it from me so that I didn't have to watch her put it into my IV. Bob didn't even get a chance to get one word in, Karen and I chatted the entire time. Then fifteen minutes was up, she was done, gave me a wink, squeezed my arm and started the C drip. I could relax.
The C takes a little under 2 hours, so we sat there, read magazines, passed the time. When the drip was done, the machine on the IV poll beeps and Karen came over, unhooked me, gave me a big hug and said - You did GREAT. She knew I was a total basket case the entire time. She never addressed it, just reassured me, tried to make me comfortable so that I could get through it. And after that I was officially HALF WAY DONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
The bad week was the usual, it seemed to be a little better than most. When Dr. Kurup asked me about it 2 weeks later I couldn't even remember anything significant about it, to which she replied "well THAT'S a good sign!". They all kind of blur together now. A lot of sleeping. A lot of laying down. Nothing too exciting.
My last round of chemo was a week ago on July 7th. It was the start of Taxol infusions. Just 4 T infusions and I am done.....
Again, business as usual. Although this time Dr Kurup didn't wait for my blood to be drawn to talk to me. We chatted about Taxol and the side effects (aches and pains). She said if you get them, take some advil. We then left for the infusion room and set up shop.
Karen didn't come over for a while. When she finally did she look a little worried and asked me if I had gotten a fever over the past 2 weeks? No. "OK, well your numbers were not good so I just had to track down Dr Kurup to see if we would even give you chemo today. She said we could give you chemo today but you will have to come back tomorrow for a white blood cell booster shot" (originally I would not have had to do this since that shot is really only needed for A, not T). I said "um, ok. what was my white blood cell count?" karen replied - "One." ouch. It had gone from 30 the time before to 1. I asked Karen if there was anything I could have done, and she said no- it just seems that my marrow is very sensitive. But it does respond to the shot, so that is good.
For the T, they give you a much weaker anti nausea since T does not typically cause nausea. Karen started the drip of the anti nausea / steroid and talked to me about the side effects of T. It can sometimes cause an allergic reaction when administered so watch out for sharp pains in your back or shortness of breath and tell me right away. ok. Because of the allergic reaction they also give you a drip of benadryl. After the benadryl I pretty much passed out and took a 2 hour nap. T takes about 4 hours to administer. I woke up, my mom had gotten us lunch, started to eat my sandwich and JAB sharp pain in the back. My mom got Karen's attention, she came over, immediately stopped the drip. After a couple minutes checked in again - how do you feel now? Fine, no more sharp pains. Ok. Started the drip back up. A few minutes passed and then all the sudden I started wheezing...felt like asthma attack. This time we grabbed the nearest nurse who stopped the drip again and asked who my Dr was. Dr Kurup and Karen both arrived at the same time. Apparently this is not super standard. Karen looked worried. Dr Kurup said that I could either get more steroids or get more benadryl and try starting again. Karen and I are on the same page, she gave me more benadryl. zzzzzzzzzzzzzzzzzzzzzzzz I took another 2 hour nap, did not have any more reactions. But was pretty much comatose. 2 drip bags of benadryl in 4 hours and Karen was suggesting I get a wheel chair to leave. It was now 5 o' clock and we were just finished with the T. We had been there since 10am. I texted Ella and let her know I would not be coming for acupuncture since I could barely keep my eyes open. She texted back and said no worries, come tomorrow...and remember to take your epsom salt bath tonight. Crap. I forgot about the bath. All I wanted to do was crawl in bed. But I heard Ella's voice when I got home so immediately ran a bath and I will have to say immediately felt better. Had dinner with Bob and my parents, went straight to bed. Where I just stared at the ceiling all night. I got up Friday morning and had ENERGY (where did this come from on no sleep?) so went and ran some errands, got my white cell booster shot, went in and saw Ella for my appointment. Ella took my pulse and was said WHOA you have a lot of steroids pumping through your veins right now (ah....that is where the energy came from). I generally felt pretty good and was very optimistic. Maybe I won't have any side effects from the T?! I "woke" up Saturday morning after no sleep again. Took a couple naps. Hmmmm, don't feel that bad. This round may not be that bad. Then Saturday night the aches starting creeping in. I felt like I had the flu. I took some advil, took a beer into the bathtub and hoped that would make it better. Nothing. Not a dent. I ached all over. Went to bed. Again little sleep. Sunday I felt like I had been in car wreck. My entire body throbbed in pain. Back to bed. More advil. More nothing. Eventually the pain just settled like sand into the lower half of my body. Sunday evening I felt like I had two broken legs. I was having a hard time walking. My mom urged me to call the Dr. No, no....I will wait until tomorrow...maybe this will pass. 9am Monday morning, two broken legs still throbbing, I called the nurse line. Nurse Julie called me back right away. HELP I feel like I have 2 broken legs and advil is doing nothing. She asked if I had anything left over from surgery. YES I have vicodin! She said ok, start there, take those and if that doesn't work then call me back and we will prescribe something stronger. I left this conversation with a few thoughts - first of all, I HAD VICODIN THE ENTIRE TIME AND COULD HAVE TAKEN IT? and second of all, what do you mean "if that doesn't work"? %$^*& I took 2 vicodin and settled back into bed. Within a half hour the pain was starting to get better. Within an hour it was GONE COMPLETELY. Bob came in and checked on me, concerned that I was still in pain, did I want to call Ella and make an appt? I didn't even open my eyes, just groggily said "oh no. I feel gooooooooooood. the pain is alllllllllllllllllll gone." He laughed and said he was glad the pain meds were working and I fell into a deep and very yummy sleep for the first time in days. The rest of Monday was a vicodin haze.
Tuesday I was hopeful that maybe I didn't need vicodin anymore? Got up made breakfast. Dammit. Pain starting to creep back up the legs. Back on the vicodin. Tuesday wasn't as fun as Monday. I felt groggy, didn't want to be taking these anymore. Still needed them. Napped all day.
Finally yesterday I got off the vicodin. It took a while to shake that medicated feeling. The pain was just tingly, not too bad. Not bad enough for vicodin. I woke up today and the tingling was gone completely. I was just *sigh* tired. Still am. Hoping for my TA DA feel good moment tomorrow morning.
Tuesday, June 21, 2011
If you let it, chemo will...
- Strengthen the bond with your true friends, and weaken the bond with fair weather friends
- Steal your vanity...then make you realize you never needed it to begin with
- Confirm your suspicions that you have the world's best husband, the world's most awesome baby, and the world's most supportive and loving parents
- Renew your faith in the world through the kindness of strangers and the hugs they give you with their eyes
- Make you appreciate the simpler things in life...like a really good nights sleep
Thursday, June 16, 2011
Third time's a charm
Round three was rough. I've just emerged from spending the last week in bed. I had my usual 2 day chemo hangover, although a little more brutal this time around (I assumed that maybe it would just get cumulatively more brutal) and then I just couldn't get out from under that cloud. Everytime I would try to get out of bed my head would spin, I would get dizzy....no good, right back into bed I went. The fatigue was insane...like nothing I have ever felt. Resting wasn't helping. I still made sure to get up every few hours to eat, but as the days went on I was just getting weaker and weaker...and more and more depressed. All I could think was "oh no, this is how it's going to be from now on" and it was not a great outlook since I have 2 more months to go. And since I can't watch TV (makes me nauseous) and couldn't read for the first few days (hurts my eyes) I could only lay there...and start to think....which would eventually lead to thoughts of recurrence and my bargaining with the universe "please please please make this work, I can't do this again." It was not a good week.
But then last night I thought, god this can't be right....this just feels different from the first two rounds, there must be something wrong. Am I anemic? Light research online confirmed my thoughts so last night I downed 10 oz of leafy green juice and one hamburger patty. Within hours I was feeling better. And this morning I woke up and RELIEF oh my god my head isn't spinning like it's on a top and I am not wiped out from just walking up the stairs. I feel stupid that I let it go on so long without calling the doctor. Especially since it was such an easy fix. But I honestly thought, well this is just the new normal. I am so glad I was wrong.
This past Sunday Thomas took his first steps! He was in the den with my parents, holding onto the couch standing up. I walked in. He turned to look at me, got a HUGE grin on his face and turned around and took three steps to me. My heart swooned. Instant fix for the chemo haze. We all whooped it up and cheered him on as he continued to try to walk around on his drunk legs. It was awesome. So even though this week was a dark one, I had moments of light.
But then last night I thought, god this can't be right....this just feels different from the first two rounds, there must be something wrong. Am I anemic? Light research online confirmed my thoughts so last night I downed 10 oz of leafy green juice and one hamburger patty. Within hours I was feeling better. And this morning I woke up and RELIEF oh my god my head isn't spinning like it's on a top and I am not wiped out from just walking up the stairs. I feel stupid that I let it go on so long without calling the doctor. Especially since it was such an easy fix. But I honestly thought, well this is just the new normal. I am so glad I was wrong.
This past Sunday Thomas took his first steps! He was in the den with my parents, holding onto the couch standing up. I walked in. He turned to look at me, got a HUGE grin on his face and turned around and took three steps to me. My heart swooned. Instant fix for the chemo haze. We all whooped it up and cheered him on as he continued to try to walk around on his drunk legs. It was awesome. So even though this week was a dark one, I had moments of light.
Tuesday, June 7, 2011
The Good Things about having cancer...
#1) I get to see Thomas all day everyday. Even when I am too tired to do anything (like the other day) I just lay down on the ground, lay all his toys on and around me and he just crawls over me and around me and sits down and plays. Heaven
#2) I see my family everyday. Every night we all sit down to dinner (my mom, my dad, Bob and I) and eat dinner together and talk. Some nights we don't have much to talk about, but I will cherish this time where I get to see my parents everyday.
#3) Reconnecting with old friends when they find out your diagnosis. M: I loved loved loved seeing you today and catching up! Even though it's been 10+(!) years it felt like no time had passed and we were just sitting down and laughing and talking like we used to. You are such a good, wonderful, funny person...just like you were 10 years ago. I heart you...
#4) No one questions it when you say you just need to lie down for a minute. There is nothing like a good uninterrupted mid day nap ;)
#5) The kindness of strangers. I was shopping at Cost Plus today, picking up some glass containers to put Thomas's leftovers in, and this total stranger (NOT a store associate) just randomly made eye contact, smiled and asked me how I was doing. And no he was not hitting on me....pretty sure you don't get picked up on in the middle of day when you are bald.
There are lots of good things that come out of this...but those are just the ones that happened to me today.
xoxo
#2) I see my family everyday. Every night we all sit down to dinner (my mom, my dad, Bob and I) and eat dinner together and talk. Some nights we don't have much to talk about, but I will cherish this time where I get to see my parents everyday.
#3) Reconnecting with old friends when they find out your diagnosis. M: I loved loved loved seeing you today and catching up! Even though it's been 10+(!) years it felt like no time had passed and we were just sitting down and laughing and talking like we used to. You are such a good, wonderful, funny person...just like you were 10 years ago. I heart you...
#4) No one questions it when you say you just need to lie down for a minute. There is nothing like a good uninterrupted mid day nap ;)
#5) The kindness of strangers. I was shopping at Cost Plus today, picking up some glass containers to put Thomas's leftovers in, and this total stranger (NOT a store associate) just randomly made eye contact, smiled and asked me how I was doing. And no he was not hitting on me....pretty sure you don't get picked up on in the middle of day when you are bald.
There are lots of good things that come out of this...but those are just the ones that happened to me today.
xoxo
Sunday, June 5, 2011
*poof*
And like magic, 7 days after the chemo infusion most of the nasty symptoms are gone. I woke up Friday and *poof* no haze, no fog, no nausea, no headaches, no migraine eyes. The only ones still hanging around are the fatigue, which unfortunately is catching up with me, chemo brain and the metalic taste in my mouth (yum, tin foil). I forgot to post an update on the bone pain from the GCSF shot which I get after chemo - it only lasts for 2-3 days and I should expect it 7 days after I get the shot (just had my first twinge of the back pain last night).
The fatigue is definitely catching up with me, but as long as I am smart about it I can totally handle it. Friday was not a smart day...I woke up and felt so good I thought "I can take care of Thomas by myself today!" which by 2pm I was totally regretting and starting to wind down like a clock. By 4pm I was so tired I felt nauseous again and just had to lie down for an hour. And the rest of the night was kinda shot. But now I know not to repeat that, so with small intervals of rest or naps, I can actually have a good day!
It was a GORGEOUS weekend in Portland (welcome summer!!!) so we spent lots of time outdoors soaking up the sun. Which leads me to what was such a huge unknown.....going out without hair - how would I feel?! My first outing was just out to run an errand (fill up on gas then grocery store). I tied a silk scarf over my head and headed out. Surprisingly not traumatic at all. In fact, I really forget that I don't have hair these days. I am sure it's jarring to those that are looking at me, but I don't feel any different....so I really forget about it!
What I learned is that there are one of three responses from strangers:
response #1 (my favorite): overwhelming niceness. The guy that pumped my gas this week was the same one that pumped my gas last week (when I had hair). Last week he was polite and efficient but no small talk or anything. This week he practically leaned in through the window to hug me.
response #2 (most surprising): cannot make eye contact. My checker at the grocery store (a store known for how nice the people are and everytime I go in they chat you up big time) could NOT look at me. She was really having a hard time with it. She was young (I heard someone wish her a happy 26th birthday). She just couldn't look at me. And I am not judging at all....who knows, this could be so painful for her on so many levels, maybe she knows someone going through it, maybe someone in her family died from cancer. No judging. Oh and the guy bagging my groceries was a #1 response, so he made up for it spades.
response #3: absolutely no different than when I had hair. This is probably the most refreshing. And it's the one that makes me forget that I am any "different". I went into a natural pharmacy to get some homeopathic remedies for nausea. I had to ask a store associate because I couldn't find them. She asked what I was using them for (since there were different doses you could buy) and I said "nausea". She said "can you be more specific - what is it for?" And I kinda wanted to say "seriously?" but instead said "chemo" and she said "oh, ok, you should take this dose...etc etc" Then when she was ringing me up she asked "so have you started yet on chemo?" again wanted to say "seriously? do you see the scarf and the sans hair?" but instead said "yes, on my second round now" and she wished me luck. Very nice.
One of these days I will go out without the scarf, probably when my head gets a little more uniform with the hair loss (it's kinda like patches the dog right now). At home I just go bald, but I haven't mustered up the courage for an outing bald yet. I tried my wig on the other day.....weird, just weird. It was weird to look in the mirror and see the "old me" with hair (my wig is pretty much an exact replica of my old hair cut and almost identical in color). It feels very dress up and pretend. Not sure when I will wear the wig...maybe for a date night :)
The fatigue is definitely catching up with me, but as long as I am smart about it I can totally handle it. Friday was not a smart day...I woke up and felt so good I thought "I can take care of Thomas by myself today!" which by 2pm I was totally regretting and starting to wind down like a clock. By 4pm I was so tired I felt nauseous again and just had to lie down for an hour. And the rest of the night was kinda shot. But now I know not to repeat that, so with small intervals of rest or naps, I can actually have a good day!
It was a GORGEOUS weekend in Portland (welcome summer!!!) so we spent lots of time outdoors soaking up the sun. Which leads me to what was such a huge unknown.....going out without hair - how would I feel?! My first outing was just out to run an errand (fill up on gas then grocery store). I tied a silk scarf over my head and headed out. Surprisingly not traumatic at all. In fact, I really forget that I don't have hair these days. I am sure it's jarring to those that are looking at me, but I don't feel any different....so I really forget about it!
What I learned is that there are one of three responses from strangers:
response #1 (my favorite): overwhelming niceness. The guy that pumped my gas this week was the same one that pumped my gas last week (when I had hair). Last week he was polite and efficient but no small talk or anything. This week he practically leaned in through the window to hug me.
response #2 (most surprising): cannot make eye contact. My checker at the grocery store (a store known for how nice the people are and everytime I go in they chat you up big time) could NOT look at me. She was really having a hard time with it. She was young (I heard someone wish her a happy 26th birthday). She just couldn't look at me. And I am not judging at all....who knows, this could be so painful for her on so many levels, maybe she knows someone going through it, maybe someone in her family died from cancer. No judging. Oh and the guy bagging my groceries was a #1 response, so he made up for it spades.
response #3: absolutely no different than when I had hair. This is probably the most refreshing. And it's the one that makes me forget that I am any "different". I went into a natural pharmacy to get some homeopathic remedies for nausea. I had to ask a store associate because I couldn't find them. She asked what I was using them for (since there were different doses you could buy) and I said "nausea". She said "can you be more specific - what is it for?" And I kinda wanted to say "seriously?" but instead said "chemo" and she said "oh, ok, you should take this dose...etc etc" Then when she was ringing me up she asked "so have you started yet on chemo?" again wanted to say "seriously? do you see the scarf and the sans hair?" but instead said "yes, on my second round now" and she wished me luck. Very nice.
One of these days I will go out without the scarf, probably when my head gets a little more uniform with the hair loss (it's kinda like patches the dog right now). At home I just go bald, but I haven't mustered up the courage for an outing bald yet. I tried my wig on the other day.....weird, just weird. It was weird to look in the mirror and see the "old me" with hair (my wig is pretty much an exact replica of my old hair cut and almost identical in color). It feels very dress up and pretend. Not sure when I will wear the wig...maybe for a date night :)
Wednesday, June 1, 2011
Round Two
Round two was easier, at least physically, than round one. I knew what to expect, I had my sleep cocktail perfected (thank you ativan) and it wasn't so much of a shock when the nausea hit. The medicinal haze was shorter this time - only 2 days - yay! but for some reason the nausea has lasted longer (still have a case of the yucks). But while it was easier physically, it was definitely harder emotionally. I've tried hard to avoid the "why me" feeling but it crept up on me this round - why do I have to go through this, and worse yet, why does my family have to go through this. It is an awful feeling to put your friends and loved ones through this with you. A couple of months ago I met with a cancer survivor, Mary Anne, who made the comment "I thought about not telling my family when I found out, I thought about just going and hiding out for 6 months so they wouldn't have to go through this". I know exactly what she meant now. At the time when she said that I was like - oh, wow, I don't have a choice, I need my family to help me through this! But now I wish I was in hiding so that they didn't have to see this all. (Family - I apologize that you are reading this - I love you and couldn't do this without you....just wish we didn't have to do it at all) But aside from that little pity party, all is fine....I am feeling better everyday!
As for the hair......you know that scene in "Coming to America" where the founders of Soul Glow get up from the couch and leave behind wet marks from their hair? Ok, that is me but instead of wet marks it's big patches of hair. I was shedding EVERYWHERE I put my little head.....so we decided to commence operation G.I. Jane and buzz it all off yesterday. Bob and Elizabeth took turns holding Thomas while the other one buzzed my hair. And yes, it took all three of us (and three opinions) to do a simple task. Once it was all done it felt relatively anti-climactic....honestly, no trauma at all. Thomas was fine with it, I was fine with it.....no big deal. It doesn't look awful, although I did realize I have a very small head.
It's been raining the past few days here (big shock I know) so I haven't been going on my walks. But Saturday's forecast is 80(!) and sunny so I can't wait to get out and soak up the vitamin D....
As for the hair......you know that scene in "Coming to America" where the founders of Soul Glow get up from the couch and leave behind wet marks from their hair? Ok, that is me but instead of wet marks it's big patches of hair. I was shedding EVERYWHERE I put my little head.....so we decided to commence operation G.I. Jane and buzz it all off yesterday. Bob and Elizabeth took turns holding Thomas while the other one buzzed my hair. And yes, it took all three of us (and three opinions) to do a simple task. Once it was all done it felt relatively anti-climactic....honestly, no trauma at all. Thomas was fine with it, I was fine with it.....no big deal. It doesn't look awful, although I did realize I have a very small head.
It's been raining the past few days here (big shock I know) so I haven't been going on my walks. But Saturday's forecast is 80(!) and sunny so I can't wait to get out and soak up the vitamin D....
Subscribe to:
Posts (Atom)