eTime has flown by!
Where am I in my treatments:
Cycle 5 Update: Cycle five proved to be a challenge, my symptoms afterward were harder to recover from, and lasted longer. Arm pain at the infusion sight was really challenging this time. My suspicion is that since a smaller vein was used for this infusion, one in my left hand, it forced the chemo drugs through smaller and more delicate veins. The pain spread up the hand and into the arm and lasted a couple of weeks. Other challenges included a nasty stomach upset, which took a couple of days to get past, with associated lingering issues that took another 8-9 days to mostly resolve. Pain and steroid use usually cause sleeplessness, so all of this probably contributed to a greater amount of fatigue than normal. Interestingly, the fevers that I usually get around a week after infusions never rose above 100 degrees, so one small area of improvement to note for cycle five. Overall, I simply did a lot less, slept more when I could, and distracted myself with movies and other quiet, easy activities when I couldn't.
Clycle 6 Update (WED 6/30): Cycle six was my last cycle of CHOP-R! I'm so excited! The infusion was long as usual, 8 am until 5 pm, but uneventful. Nurse Cathy got the vein on the first try (others needed up to four attempts to get the IV started), so that put us off to a great start. The day flowed on by. Due to the late day on Wednesday, I had my Neulasta shot on Friday morning, July 2, that's the one that gets my white blood cell production kicked back into production. Easy, peasy! Jessica and Gary, who do all of the shots and blood tests at the Enloe Cancer Center use teensy needles and are so good at what they do, that I'm in and out and hardly notice anything has happened. Love those folks! Cycle 6 is doing it's thing, and all I have to do is manage symptoms and avoid infection.
Emergency room: One of the items on my "Report Immediately to the Emergency Room" list is rash. Unfortunately, on Saturday morning that's just what I discovered. So, (after coffee and breakfast), we headed to the ER. Rash confirmed, on-call oncologist consulted by the ER doc (cause everything's more complicated with chemo patients), prescription written. We were out the door in just under 2 hours, and that's got to be a record for any ER. It was empty when we came in, but I was still impressed. Thanks to the folks at the Enloe ER, every one of them. Both times I've had to report in, they were professional, patient with my questions, and thoughtful of my condition and immune system. I'm very grateful, but hope I never have to go back. You get that, right?
Changes: Believe it or not, I still have some fuzzy hair on my head and I have maintained my eyebrows and eyelashes. Based on conversations with other chemo patients, I could well have lost those by now. For some reason (so far) I seem to have been spared that. I am really hoping that means I will have a little jump-start on regrowing my hair. I should start to be able to use Rogain soon. I'll be checking my notes to see when that's feasible. I know I'm repeating myself, but I'll be so much happier when I can sport at least a minimally socially acceptable amount of my own hair. That will be a huge day for me. I wonder what it will look like? I'm told to expect it to be different...
One other note on changes, I'm looking forward to getting all of the steroids out of my system. They puff me up, make me hungry and disrupt my sleep. It will be so nice to have that behind me.
Testing and upcoming appointments: CT Scan is scheduled for July 8 at UCD in Sacramento, which will help us know where I have ended up after all of these treatments. Follow up appointments with both oncologists (Chico and UCD) come after that, which will restage my cancer. I expect to hear the "R" word (remission) for now. Hopefully, finally, a truly long one! Not sure about the possibility of more Retuxin maintenance. It didn't seem to help after the Bendemustin chemo I did the year previously. Jury is still out on that one.
What I'm doing to stay busy: I'm working on back to school plans here and there (not too hard). Teachers at our school report back on August 1, so it is nice to have some organization done before hand. Bob and I are making plans for our trip to San Diego and Palm Springs to be with family. Super excited about that. Consequently, I'm making a little travel journal to take along. Bob has finished the retaining wall in the back yard, although the really hot weather these last couple of weeks has delayed the back filling of the dirt. We've been working in the veggie garden, we canned a bit of peach jam, and attended a fruit tree growing clinic at Hodges Nursery (great inspiration as our tiny back yard starts to take shape). I've been continuing with walking and yoga as pain and other impairments allowed. I must say that I'll be looking forward to some more normal energy levels. Walking has become a bit of a challenge, so we've shortened them down, but tried to stay regular.
Reading: I finished reading a great book, called The Philadelphia Chromosome, and just this morning finished one I also enjoyed quite a bit. It's Survival of the Sickest, but Dr. Sharon Moalem, about the evolution of illnesses and how they can sometimes convey an evolutionary advantage. Fascinating read!
Thank yous: Ashley, Josh, Andy and Cristi for the beautiful flowers! What nice surprise! Stacy, sister Chris, and Mom for constant checking in and sending love. Sister Trish for the loooooong phone chat on a busy day. Karen Chandler for crafty days that are such nice diversions, Karen and Ted for company, good dinner companionship and DVD and book loans. Students and parents who still keep in touch and send such uplifting thoughts as well as share their own awesome summer activities (either via this blog or through emails). You all have helped me work through these challenges and lightened the more challenging days, for which I am eternally grateful. Can't wait to get back into 'normal' life again!
Kudos and thanks to you if you're still checking in! I'm so glad you're here. I hope you're having and amazing summer doing lots of things that you like to do.
Where am I in my treatment and how am I doing?
I've finished cycle four and I'm on to cycle five on Wednesday, June 8. Normally, I'm feeling pretty perky by now, but cycle four was the hardest yet and took the longest to recover from. For most cycles, I do pretty well for the first couple of days post infusion, due in large part to the steroids and anti-nausea medications I get during my infusions, and then I start to slide downhill as those medications wear off. This time, I was downhill for a lot longer than previous treatments. Mostly, I was dealing with aches and pains, but I also had an on and off again fever for a couple of days. All in all, more pain, fever and fatigue. It's been harder to maintain my walking and yoga schedule, but I do what I can and try to do at least something everyday. I kind of expect cycle five and six (three weeks from Wednesday), to be challenging, but we have no plans other than to be home and work on some projects around the house as we can. No stress. :)
What I'm doing to stay busy:
Mostly, I continue to craft, although on low energy days I have been more into watching movies and coloring in my fancy coloring books. I'm reading a book called The Philadelphia Chromosome, by Jessica Wapner. It's about the discovery of the cause of Chronic Myeloid Leukemia and the development of a treatment for the disease. It's a fascinating read and has some references to follicular lymphoma, which is what I have. I love reading good science books in my spare time. I also spent some time scrappbooking with Karen Chandler, who's my scrapping buddy. You can see that I'm mostly keeping it low-key. This coming week, Bob and I will start putting stacked stone on the little retaining wall that Bob built in our back yard. My job is to lay the stone out in a nice pattern. I think I'm up to that. Our plan is to do that for a little while early each morning, before it starts getting hot. It really doesn't matter how long it takes us to finish, as there is no rush. We're also planning a trip to Bob's family get together in Southern California at the end of July. I should be back on my feet and able to travel comfortably by then, so it is something really nice to look forward to. We love to travel in the summer, but of course, we have had to stay at home for quite some time now, so we're enjoying the planning.
What are you doing this summer? If you feel like sharing, please feel free. I'd love to hear what you're up to. Also, here is a link to my recommended science reading list. Most of these are books I've read, so if you want to know more, you can email me for more info. If I haven't read a particular book, it's one I want to read, so I can tell you why I think it's a good book. Anyway, for those who are interested, these are titles you'll probably enjoy.
It was so much fun for me to be able to see you and say hello last week, and to see many of you present your final project. Congrats to those of you who so obviously worked very hard on your projects. There is no secret to success other than being organized and putting in the effort. My thanks go to Mrs. K, who worked so hard to make the Google Hangout happen. Sorry I didn't get to see the marine bio class, but I'm sure you all did a great job, too! Thanks to Mr. Pierson for making that happen. I am so sorry that I'll be missing out on Graduation on Thursday. To all of you seniors, I'll be thinking about you on your BIG day! Success and Congrats to you all!
I got a chance to ask some of you what your summer plans are, but if I missed you and you want to share, please feel free in the comments below. I'd love to hear what you're doing.
Where am I in my treatment? Tomorrow, May 18, I will have my fourth treatment, and will have only two more to go after that, which means that if all continues to go well, I will be done with treatments by the end of June. I'm more than half way now and doing pretty well. My plan for tomorrow is to get in plenty of fluids between now and then. That makes it easier to get the IV started, which we had a problem with last time, if you recall.
The only excitement of this cycle was another fever. I started to feel warm on the night of May 4th, and when I finally took my temperature it was 101.2 degrees. Protocol is that if my temperature is above 100.5 degrees, I need to call my doctor's office, or if it's after hours, I need to go to the emergency room. So, off we went to the emergency room even though my fever was going down. After lots of tests, and a long time, nothing specific was found and I got to go home. We had some test results back, but not all. One of the findings was that my neutrophil count (a kind of white blood cell) was .4% and it should have been 8%. That didn't cause the fever, but it meant that I was ordered to wear a mask in public for the next several days. All I have to say about that is "NOT fun!" Wearing a mask is better than getting an infection and getting really sick, so I didn't complain too much. Better safe than sorry, I guess.
So, fingers crossed for no fever with cycle four. I'm in good spirits and overall doing well.
Ongoing Symptoms: fingernails are getting progressively dark, but I'm told this is temporary and it doesn't mean that I'm losing my nails, as some patients do. Fingertip numbness is continuing to progress and make me clumsy, but there is no pain.
Other activities: I'm still doing my stretching, yoga and daily walk. I'm also doing a lot of crafty stuff, currently scrapbooking the trip to Wyoming that Bob and I took three years ago with my son, Craig.
BIG News! I'm going to be a grandma again in September. My son, Craig and his wife, Liz, are expecting in September. It's a boy, which makes it our total grandchild count three girls and three boys! Massive smiles at our house!
You are in the home stretch! I have loved hearing about your progress on your finals and that you're really putting in the effort needed to do a fabulous job and get a good grade. You get out what you put in, and you need to keep plugging along regularly to do that. It sounds to me like most of you are doing just that!
So, where am I in my treatments? Last Wednesday, April 27, I had my third infusion of the six that are planned. It was a looooooooong day. We checked in at 8:30 am and were done shortly after 5 pm. Whew! For some reason ( tiny veins, not enough hydration, or a combination of issues), it took the nurses almost two hours to get the infusion started, including three sticks that didn't work. Finally, on the fourth try, we got a vein that would cooperate. It was nerve-wracking and a bit uncomfortable, but not the worst thing that could have happened. We just have to make sure we do everything possible to avoid this for the next time. I have an appointment with my oncologist (cancer doctor) this coming Wednesday, so you can imagine that this will be a topic of conversation at that appointment. Over all, though, I have had very little nausea, no fever this time and few other side effects that are not being managed with the correct medications. I must admit that this whole treatment has gone fairly well so far. The biggest thing to keep on top of now is to avoid infection. This week, my immune system is going back into nadir (very low immune response) and by the end of next week, it will begin to climb up again before my next treatment on May 18. All I have to do is to stay healthy and well in the meantime.
Activities and other interesting bits. I have mostly done my daily three mile walks, with a cheat day the day last week that was really rainy and of course my infusion day. I have bumped up my yoga routine to a new and more challenging video (soooo not graceful and grateful I'm not in a class where anyone can see me!). The new workout is getting easier, but the first time I did it, I wasn't so sure I could handle it. Not to be put off, I just kept practicing and now it's a challenge, but I don't feel like I'm going to fall over all the time. I'm gaining strength and control. Practice, practice, and more practice, and it's making a difference.
A couple of you have asked what crafts I've been doing, so I've included a couple of little photos below to share. Hope you like them. Good thing I have a hobby I enjoy to fill my head and keep my spirits up.
One last fun item to share. On Sunday afternoon, May 1, I was allowed to sit waaaaay at the back of the theater for the Beauty and the Beast performance done by California Regional Theater. Thanks to the folks at CRT for the amazing and thoughtful accommodation. As many of you know, my daughter, Mrs. Fox, our theater teacher, played Cogswell in the performance. I was (and always am) so proud of her performing skills. She works so hard to get into the character and hone her performances and of course, it certainly showed on Sunday while we watched. BTW, the whole cast was awesome and the play was delightful.
Thanks and thanks again for your notes of encouragement, keeping me in your world and thoughts, and for the kindness and cheer you bring me! You all brighten my days and make me smile A LOT!
Hugs to you all!
I know it's been a while, so it's time for a quick update. Not much is new, which is why you haven't heard from me.
This week has been a pretty good week. I'm adjusting to the hair loss, thanks for all of the encouragement you've given me. I feel much better this week. I still feel a little awkward in public, but It's getting easier. I even went to the library to get a library card and reserve some videos that I'm interested in. That's absolutely progress.
There are only two real symptoms to talk about for this past week. The peripheral neuropathy in my fingertips and toes is an ongoing one. The other is that I had about 36 hours of on and off low fever last week. I'm supposed to call the doctor's office if any fever gets over 100.5 degrees. I bumped up to that line, but never crossed it. Whew! Otherwise, I've been watering the seeds we just planted in the garden, working on craft stuff, and puttering around the house. Oh, and I've started an doing an online yoga workout each morning. Actually, I do stretches with Bob, then my yoga video, then my walk. Not too bad, right? Do any of you do yoga? I've been wanting to do classes for a long time, but I'm a little worried about being in a class with other people right now, so I decided to get started with videos. Really.easy.videos. Yes, I will work my way up to more vigorous and ambitious ones. It's a start.
Thanks to all of you who've touched base with me over the last couple of weeks. You brighten my day and keep me connected to the world. You all got me through a hard week in one piece, and for that I am sooo grateful. I've heard from a few of you about your final project topics, I'd love to hear more, if you have a minute to share. You can email me at my school email, if you'd prefer. email@example.com
Smiles to you all. You're all in the home stretch now, so keep working hard!
This past Wednesday, I completed treatment number two, and let me start out by saying that I'm doing really well. Applying what I learned from round one, I seem to be avoiding a couple of issues that I had the first time. The most important issue that I wanted to address was the pain that resulted from the Neulasta shot, which I got yesterday at 4 pm. It's given 24 hrs after the infusion ends and is designed to help kick white blood cell production into gear. I got right on the Claritin and Tylenol and I'll stay on them for the next 5 days or so, just to make sure to avoid the pain. So far, so good. The other issue is the Prednisone side effects, primarily I have difficulty sleeping. I was able to sleep for little stretches of 45 minutes or so last night, followed by a wake period of an hour or more. Looks like I'll be taking a nap sometime today. Tonight, right before bed, I'll take the prescription that I have to help with that, and we'll see if that doesn't do the trick. There is nothing like a good night of sleep!
So, if we have these cycles down, this week will be a bit downhill, depending on how well I manage symptoms. After that, I should be feeling better but my immune system will bottom out for the next several days before starting to swing up again in time for my next infusion on April 27.
The only real sadness I have is that I'm really losing my hair right now. I know we talked about my feelings about that in class. I accept that the treatment will hurt sometimes, but I think that losing my hair is just a huge bummer. I admit I had a hard time the first day it started to be noticeable, and I had to have it cut short so that it will at least look fuller for a little longer. I'm trying to cope with it. One little silver lining is that I decided to put the hair that falls out after I comb it in the morning out for the birds. They like to build their nests with it. Have you ever noticed that some bird nests around horses have horse tail hairs in them? Well, somehow this makes me feel a little better about the process. Birds are so busy nesting right now. "It is what it is, but it becomes what you make of it." Right? My favorite quote gives me a lot of courage when I need it. I also bought a little sunhat a few cotton scarves. I'll get though it, I don't like it, but it could be a LOT worse. Hair grows back.
Thanks and love to all of you who leave comments of encouragement. You cheer me on and make my day! Thanks also to my sweet Mom for sending the beautiful flowers! And Thanks to my daughter, Karen, for visiting me during infusion. It's a looooong day and you brightened it quite a bit.
Here's a question for you- What topic have you selected for your final project? Did you know Mrs. Amanda is going to try to Skype me in to watch too? How super cool is that?
Smiles and Hugs to you all!
Hi Everyone! It's the last few days of March, and before you know it, school will be over. I'm sure you're all feeling the pace pick up for the home stretch. It feels really weird for me to be sitting on the sidelines, not helping, but let me offer you my encouragement and two bits of advice.
1. Remember to stay organized (use those planners, right?).
2. Be sure to break down large tasks into smaller ones and make steady progress each day.
That's it, that's all of the advice for today. If you're reading along, I'm so pleased that you're here.
Shameless plug for Marine Biology for next year: Students who have completed biology and would like to explore more about the ocean and it's abundance, please consider taking Marine Biology with me next year. Lots of labs, of course!
It's been fun seeing a couple of you while I'm out on my brief little excursions. I saw one student while I was doing my daily walk on Sunday and another at Winco (please ignore the cookies in my shopping cart). It always makes my day!
How I'm feeling: I feel so close to normal, it's hard to be home. I am staying busy with chores that I want to get done while I can, and of course, I'm crafting daily. I do have two common side effects now.
The first is called peripheral neuropathy, a numbing of the fingertips and toes. In extreme cases, whole limbs can become numb, but in my case it's most notable in my fingertips, so you can imagine that it's a little more challenging to type and craft. This usually worsens as treatment progresses, but also diminishes after treatment. I had some of this when I did my first chemo a couple of years ago, and it did go completely away. For that reason, I'm not too concerned about it for now.
The second is arm pain in my treatment (IV) arm. This is also pretty common, as the chemo drugs are pretty rough on the tissues of the veins where they are injected. It is feeling better than it did last week, so I'm grateful for that. If this becomes too big an issue for me, we may need to take steps to work around it. For now, we wait.
Where I am in treatment: As of today, I'm 16 days out from my first treatment and my immune system is at its weakest point. It will turn around this week and begin to recover in time for the next infusion, on April 6. The chemotherapy regime I'm on is called CHOP-R. Those letters all stand for one of the chemo drugs in the treatment. Here is a LINK to a page for more information about the CHOP-R regimen, for those of you who are geeky, biology types (yes, I know who you are!), and want to know more. It's not too technical, I promise.
A little biology and an fun correlation to what we studied earlier this year: Each of the drugs in the CHOP-R treatment works in a different and complimentary way. The drug, Vincristine is also known by it's trade name, Oncovin, and is the O in CHOP. Here's a little excerpt from Chemocare.com:
" Vincristine belongs to a class of chemotherapy drugs called plant alkaloids. Plant alkaloids are made from plants. The vinca alkaloids are made from the periwinkle plant, Catharanthus rosea. ... the vinca alkaloids are also known as antimicrotubule agents...(which) inhibit the formation of microtubule structures within the cell. Microtubules are part of a cell's apparatus for dividing and replicating itself. "
Since cancer is a disease of cell division out of control, how can you stop cell division? So, do you remember back to when we were working on cell division (mitosis), and doing our hand signs for each stage (PMAT)? Metaphase is when all the chromosomes meet in the middle (hands together), and Anaphase is when the microtubules pull one set of the chromosomes back to opposite sides of the cell before it divides (your hands were acting like the microtubules pulling the chromosomes to each side). What if the microtubules were destroyed? The chromosomes would sit in the middle, just waiting. And stuck at this spot, the cell then dies. Of course it's a bit more complicated, but that's essentially how the Vincristine works. Amazing that now you can think of these things and get it. Pretty.cool.
That's it for today. It's 9:46 am and Earth Science is underway. I miss you all bunches, so drop me a line, take care and work hard for the home stretch!
Whether you went far away (like Karen Chandler), or stayed close to home, I hope you all had a good spring break. Today I have a feeling that I will really start to miss you all. Later today, I will be in to the school admin office for a few minutes for some paperwork, but this will probably be my last day on campus for some time. If you see me today, elbow bumps are ok, unfortunately hugs are not. I will be really happy to see any of you that have a moment to say 'hi'!
I'm doing fairly well. I've been pretty lucky after my first chemo treatment last Wednesday (Read post below, if you like). I didn't have huge nausea problems and the Neulasta headache that I worried about never really happened. I have luckily been able to walk a little each day (a daily goal), but tummy troubles have shortened my regular walks. Other symptoms at the moment are swollen neck glands, general achiness and extremely tired. As my white cells (immune) drop off as the aftereffect of the chemo, my immune system will continue to slide down. Since my first infusion was last Wednesday, this Wednesday will probably be my lowest day, and then I'll start building back up again getting ready for the second infusion. My plan for that is to just stay home and take it kind of easy. The good part of that is that all of you are in such great hands (or if you are CORE staff, you're providing those great hands). I know you'll all do well and will be well taken care of.
For my PLT students, you couldn't be under a better wing, whichever teacher you now have. Communicate if you need anything or are unsure of anything. Biology and Earth Science students, please don't hesitate to ask Mrs. K anything that you're unsure of. She really wants to provide you with a great end of semester, which is coming up fast. Marine Bio kids, please keep Mr. Pierson on track. I have a feeling you'll all have way too much fun. I would really love to Skype in or something like that to any of my classes. I know I'm missing out on the fun.
One last thing, I put a link to the right sidebar with additional info on Follicular Lymphoma, if you want to read more.
Smiles and miss you all!
Yesterday was my first chemo day. It was a long day, just over 9 hours. The nurses and volunteers were so nice and did everything they could to keep me comfortable. Bob brought along my computer, iPad, coloring book and colored pencils and my Zentangle book and pens. As usual, I mostly just slept a lot. Some of the drugs make you sleepy, and honestly, it's easier to sleep through some of the milder discomfort. Nothing yesterday was really painful. They put in one IV line and all the medications go into that, so one stick and you're done.
My nurse, Cathy, and the chemo RN/scheduler Brandy, also went over a lot of the requirements for eating and hygiene for at home after treatment. The biggest thing is avoiding infection. Next, is knowing what to do if I have side effects. Some are easy to treat at home, others require a trip to the emergency room. Fortunately, we have a binder with all of the info in it and that's helping us feeling organized. I also got a pill box that has the days of the week on it, to keep all of my at home medications figured out. I have a shot on Friday to help my immune system recover, and then three weeks of letting my body work with the medications before my next treatment.
Today is not as bad as I worried that it would be. A little groggy and tender, but mostly ok. No real bad nausea either, but that's mostly due to the amount of antinausea meds they pumped into me yesterday. I actually got a short walk in today.
Thank you's out to all of the folks at Enloe Cancer Center for the information, kindness, and TLC yesterday.
If you have time, drop me a line and let me know how your spring break is going. Hope you're out there having fun. It's a beautiful day!
Keep me posted on what's new with you!
Please feel free to comment, I'm looking forward to hearing from you. Don't worry if you don't see your comment right away, it needs to be approved by me first so that spammers can't post. If you want to comment, but not have it published, just say 'please don't post.' Otherwise, I'll assume that you're ok with allowing your post to be published.
"It is what it is,