We had the nicest Christmas! Everyone was happy - pleased with their bounty... White Bluffs Elementary adopted us and treated us to a mighty fine holiday :)
Max got this photo of me while I was still asleep - before all the festivities...(you can see that my left eyebrow is missing as well as all eyelashes...gone! Oddly, they've fallen out since November while there is some definite fuzz on the sides of my head - I actually have more hair than one of my brothers-in-law! Yea!!!
My absent port site is feeling much better. My sister-in-law was concerned that it had been taken out too early. Nope. It's feeling so GOOOOOOOOOOOOOOD!
Dr. Droesch surmised that my bruised jaw occurred after the anesthesiologist gave me more anesthesia (I was moving around while lightly sedated and lifting up my arms...) and then my airway collapsed. He had to hold my jaw up to keep it open so that I could breathe. My sister-in-law says that sometimes when a patient's airway collapses, they end up with broken teeth, etc. as the anesthesiologist rushes to insert a tube. I guess I got off easy, considering.....
The surgeon took out my medi port this morning at Kadlec Hospital. YEA!!! It feels so much better already. Have to find out who won the fight, though.... that's what the kids said. My jaw has a bruise on it and inside my mouth is a cut and I have a sore tooth. We figured there must have been a boxing match going on while I was out with anesthesia. The doctor is supposed to call me back tomorrow and I'll ask him.
I wore my santa hat to the hospital to keep my head warm in this freezing weather - and they let me keep it on. ha! or, ho! ho! ho!
I'm looking forward to hanging out with the kids this week - watch them play in all this snow! (While keeping warm and toasty in my special socks and bundled in sweaters!!!) Tonight we watched edited versions of Mean Girls and The Bucket List. I liked them both!
We've had a two-hour delay for school all week. Amazing! I don't think we would have done so if we still lived in Colorado, but, hey, I got to sleep in which was wonderful.
I think I saw Rochelle yesterday at the Cancer Center. I didn't get a chance to say, "hi", but it looked like her and her kidlets. My Taija was excited to get to work on the puzzles that they have there on every table!
I stayed home yesterday. I had a headache and I knew that my one-on-one student wasn't coming to school.... so I got more rest and caught up on "Mom things" that haven't been done in too-long-to-mention.
After taking Taija to the orthodontist, We stopped by the Cancer Center. An elementary school had adopted us for Christmas and we got to pick up the gifts - it was overwhelming! Michelle and Karen at the cancer center were so sweet. I think they were having fun playing Santa! I cried. They had a bag of gifts for everyone - including the cats and doggies!! Whoa! I am so truly amazed and overwhelmed with the generosity that is cascading our way. The bishop stopped by earlier this week and brought a box of Christmas goodies and a gift card. People are so nice!!!
I'm getting everything ready for surgery on Monday (and Dr. Chenal's nurse called to say it was okay to have the port taken out! yippee skippee!!! I don't have to worry anymore about doing it on the sly.)
I talked with my surgeon - Dr. Droesch - yesterday and he's got me scheduled to have my port (where they gave me the chemotherapy drugs) removed from my chest December 22nd. I am SO EXCITED!!!!!!! It is ugly.... It sticks out 3/4"... and it gets irritated, so even though they prefer you to keep them in for a year, I'm giving myself an Early Christmas Gift and having it taken out.
(He did ask if it was okay with Dr. Chenal..... hmmmmm, never thought to ask him, but oh, well....)
Yippee! I had my last radiation treatment today. Lorna brought me roses - mmmmmmmmm!
The doctor said I have to come back in 3 months - and get another mammogram in 3 months... and see my surgeon, Dr. Droesch, in 3 months.... So, March should be busy with doctors... but, until then I guess I'm a free woman! Yea!!!!
#28 radiation treatment today - I only have two more to go - yea! I am burnt still, but Monday Dr. Gievers said "Let's get this over with!" and then prescribed me some hydrocodone to take care of the pain and benadryl cream for the itch and the plan to keep applying the silver sulpha-something to heal the three worst spots. Larry, the fellow who works on puzzles with me while we wait for our appointments, finished yesterday - he had 67 treatments. Two others we know have finished, too. I told him that cancer must be a thing of the past since we're all finishing up. He didn't think so.
So, Monday afternoon I should be finished! I will have to have a Finisher's party or something...
I met a gal while waiting for radiation who is actually from my water aerobics class of a few years ago who just finished chemo and is now doing radiation... small world. (But I'm jealous cuz she didn't lose all of her hair... different chemo drugs.)
Went to the eye doctor's on Tuesday. The chemo drugs have caused cataracts to start on my eyes. Dr. Manley is going to keep an eye on that and see how fast they grow. I also have 3 more 'bleeder' spots in my eyes from diabetes. (Something else he is also going to watch.) I left my glasses with them since I'll be needing a new prescription for my lenses. Maybe I'll be able to Read with these!
I was remembering last week all that I have to be thankful for: - finding 'the lump' in time - having great doctors for surgery, chemo and radiation - having even better nurses/technicians to pull me through the hard times!!! - having a husband and kids who love me in spite of my bald head, absence in the kitchen for 6 months, and all my tears... - the prayers of many, many friends, family and people I don't even know! - caring people who've called or brought meals, notes, pillows, quilts, afghans, socks, plants, flowers...
Every Monday I get checked by Dr. Rege before starting radiation for the week. Last week she gave me a prescription for my burned underarm and neck. I also didn't get radiation in those places for a week. I still have to get 5 more treatments there, but it was set aside to "rest" until after they did a new area.
So, last week they zapped me with "electrons" in an area right in Left center where the incision was. (TechnoGuy told me that the other areas were getting zapped by "Photons".) It's red in the new place now - just no pleasing this body of mine, is there?
When Dr. Rege saw me today and how burnt I am, she said that I won't get radiation AT ALL for a week. If we have to keep prolonging this I may yet be there when they finish the Cancer Center's new addition!
I told the nurse about my feet - they're peeling. She said it's a delayed reaction to the chemo treatments. I guess it's that palmer-plantar syndrome come to haunt me.... At least my UT infection has cleared up! Dr. Rege said that having that is what made me burn so badly - she said that my body couldn't fight off both things at the same time.
And Stephen wrecked his two-week-old car Friday and has had a dozen other "tragedies" recently (And - sigh - that great behavior straight out of boot camp has finally worn off)... the middle two kiddos went to a big dance Saturday dressed in 50's outfits (you-know-who helped get the outfits together) ... Kyle's school has had parent-teacher conferences this month, so they've had lots of days off and early releases... Hmmmmm, I'm contemplating moving to a deserted island for the rest of the year..... too many things coming at me all at once!
So, Last week I was a tad pink on my left side where the 180 rads zap me each day. By Friday I was burnt. Ouch! I put aloe vera on my chest, neck and back twice a day, but it happened anyway. It hurts like any sunburn, but I guess I'll live. I'm also very exhausted. Some days I can't get up for work. Today I missed church and slept the entire day. This is frustrating!!!
My blood sugars have been way, way out of whack, too, which has led to a grand UT Infection. Treated it by drinking some apple cider vinegar yesterday and more today. I may have to visit the doctor, though. Whine, whine, whine..... I need some cheese with that! (That's what I tell my kids, anyway, when they carry on and on like I have!)
Today I had the kids with me - appointments, shopping Value Village's 50% off sale, radiation treatment..... The radiation techs told me that I get 180 rads each day. I'm not sure how that translates or compares to other x-rays... I asked Dr. Geivers (sp) (who's stepping in for Dr. Rege this week) yesterday about my lead apron question... why you cover yourself with a lead apron when you get Dental x-rays and not with my treatments.
Know what he said? The lead apron is just a "feel good" kind of thing. It doesn't do much and the low dose of dental x-rays really don't cause any harm, either. On the other hand, the ultra-high dose of radiation given for cancer treatments would have no problem penetrating a lead apron ("like a knife through butter") and the techs give this high dose in a very specific, directional way..... So, don't know if I feel better about that or not... I had my first twinge of pain with today's treatment.
After my zap session today, I had to remain still while they added several pieces to the "head" that does the zapping and then began marking all over me again. Dr. Geivers came in to check out the tech's artwork. Apparently he approved. This was done so that they can focus on the tumor site for future treatments.
The kids survived having to wait for me through all of this. I was duly impressed and treated them to some Halloween candy that I keep in my purse (for my one-on-one student - really!) Now that our 4-day weekend is over, We head back to school for 3 days... it just might be a rest compared to what I've been doing all weekend. (Washing walls to rid the house of the "smoke" flavoring I added Sunday, sorting and doing laundry... appointments.)
I've now had 17 (of 30) radiation treatments. My zapped skin is "tougher" feeling, but I still don't have redness anywhere. The aloe vera is working...
Heather and I got our passports in the mail on Friday! yea! Now we need somewhere to go! Any ideas?
Yesterday, I got some soft ski hats to wear on my sore head - it has prickly hair and soft fuzzy hair both growing - but rub it the wrong way and my scalp HURTS! ouch! I got an eyebrow pencil, too, since my eyebrows are NOW coming out to join my almost-lashless eyes. What a dirty trick to pull - just when I figured all the damage was done and I was on the way to recovery!
Recent accomplishments: Max & I got to the temple yesterday. And we stopped at Sonic and had Sonic Burgers, onion rings and shakes! yum! We haven't been on a "date" in months! Today I led the music at church (shaking all the way!) Bit by bit I'm getting back to normal.
(I smoked up the house pretty good today - while I was leading the opening hymn I realized that I had left some beans boiling on the stove at home. After that hymn, I walked down into the congregation and asked Max to please run home and deal with the situation... Stephen had already done that (he attends the single's ward later in the afternoon). When Max got home, the smoke alarm was going - and he found that Stephen'd opened the windows & doors and taken the burnt pan of beans out onto the porch. Whew! The house is still pretty stinky. Maybe I can wash one wall at a time over the next few days......) (And the geraniums Mom planted for me this summer are still blooming! I wonder if I can get them in the house and save them over the winter :) )
Wednesdays are usually longer at the radiation place. It was at least 20-25 minutes today (and absolutely no moving!) The techs get regular x-rays along with the treatment x-rays. I asked why I don't get a lead apron over the parts of me that aren't the target area (like when you have your teeth x-rayed.) I didn't get a very good explanation, so I'm going to try asking the techno-speak guy tomorrow.
Today I almost got a kink in my neck because I was laying in my "usual" position so long. (I lay on a platform on my back, hands over my head, head turned to the right, the left half of my gown open to expose my tattoos.) They adjust the machine to "91.5" which is how many degrees off-center the rays are so that they just touch my lungs. (There was a whole lot more to that explanation by the techno-speak guy, but I couldn't grasp the entire concept.)
I went to Dr. I yesterday. Heather made the appointment and took me. I was home from work and I'd been crying - again. I had actually been working on a prayer. I was thanking God for my chemo and radiation when I just lost it and started the crying jag. I remembered that Dr. Rege had suggested on Monday that I talk to Dr. I about Prozac. She said it's often needed for 6 months after treatments. I've been so weepy lately and it's been getting worse. Hopefully, I'm now set to compose myself... eventually. If my family can wait that long...
Dr. I answered a lot of my questions that I've been saving up. For instance, my numb toes don't have anything to do with diabetic neuropathy, it's strictly a side effect of the chemo drug Taxotere. I was worried about that. He also checked my A1C (a diabetes test to see how much sugar has been in the bloodstream over the past 3 months) it was lower than before I had cancer and the steroid treatments! Guess checking every 2 hours helped!
The young girls from church brought over a lovely gift for me this afternoon - cut out leaves with "get well" messages attached to a long braided cord. It is very cheering! I am not forgotten!
So far, so good. No redness where they're zapping me with the x-rays. No pain. I saw Dr. Rege today who told me that - unfortunately - there are no "magic" pills to give me energy (I asked!) She said that people who've been through chemo and then go on to radiation are just very tired. She said she'd write me a note to excuse me from work if I needed it. I was approved for sick leave sharing last week, so I may just have to take some time off.
I actually took the day off from work today because I had the nasty flu all weekend. Kyle had it last week. Then Jacob. Then Stephen. Now me and Heather. We're just a sharing kind of family! The other family members aren't eager for us to share, however.
Yesterday was Heather's birthday and after my appointment with Dr. Chenal (and a blood draw) and my radiation we went to the county courthouse and applied for our passports. We're headed nowhere, but just want them. It was her birthday gift from me. I was completely worn out from all of the above (and a low-blood sugar episode to boot) so I sent Heather out to buy her own cake and ice cream and to bring pizza home for us. She was okay with that. I had to weep a while thinking of how I couldn't even manage birthday trappings for my girl.
At my appointment yesterday, I whined to Dr. Chenal that my fingernails are all warped and my toes have been numb for two weeks. He just looked at me and said, "But you're done with chemo! Aren't you glad?" Oh, yeah. I forgot to be glad. Shame on me. I am glad, actually.
He said that the CT scan showed that my lymph nodes have shrunk and there is nothing abnormal about them and that the blood tests were great, too. So, I just have to go back in January and every 3 months for a couple of years. (I still have radiation every afternoon until December 3rd.) And, the radiation reduces my chances of cancer recurrence from 30% to 2%, so I guess I'm glad about that, too.
My hair? Take a look at your arm. That's what my scalp looks like... pale hair all around. It's darker at my sideburns. (For the passport photos and signing, I wore my wig, hope that isn't illegal.)
Wednesday I got a CT scan of my chest area - I should know the results of that next Wednesday when I meet with Dr. Chenal. And, I've survived a full week and two days of radiation. The only part that feels irritated is my upper arm - and the technicians say that it isn't even getting zapped. Silly arm! I started taking off my insulin pump during treatments because even though they say it isn't in an area that gets zapped, I'm not completely convinced anymore. (Look at the center of this photo. Do you see that tall fellow wearing what looks like a white T-shirt? That's our Jacob!) The high schools have been having the kids wear pink this week in support of breast cancer awareness. Wednesday, on my way to radiation I saw part of the 3-mile-long link of students (from Kamiakin to Southridge) who showed their support by forming a human chain between the two schools. I tried to get my own photos, but a guy behind me was yelling to keep moving... so, these photos are from the Tri-City Herald. The one below is of one of Kamiakin's attendance secretaries who was also out supporting the chain - a very nice lady:
I went at half time last night to the football game between Kamiakin and Southridge. They presented a check for $15,000 to the Cancer Center - money the schools had raised this week. The football players had pink ribbons on their helmets. The marching band and color guard were wearing pink shirts. Taija is in Southridge's color guard and I got some photos of her before heading out. (Max was patiently waiting for me in the parking lot.) (That's our Taija out in front!) I still get weepy. Don't know why. I got a spell during my radiation yesterday. Had to hold still while tears flowed. I tried to distract myself by counting the screws on the radiation equipment. 18.
Kamiakin's office ladies tried to convince me a couple days ago to apply for leave sharing and take time off work to get to feeling better. I am really trying to get some energy back so that I can do this job and take care of my family. It's a slow road, but I think bit by bit I'm coming along. I try to get some rest after school, but the kids always need to be somewhere.
When I have the energy, I've read the "Number 1 Ladies Detective" series by Alexander McCall-Smith. They are a lot of fun and easy reading. I also am trying to piece back together what I had started on my BYU Bachelor of General Studies class last March.
Been really tired this past week. I couldn't stay for all of church yesterday and I nap every day for several hours. That's what I get for being a slug all summer! I blamed part of this weakness on the radiation, but apparently, the "tiredness" doesn't kick in for almost 3 weeks. Carol brought over dinner for us on Saturday - what a terrific marvelous surprise!!!
I didn't realize that I'm supposed to be 1/2 hour early to my radiation appointments on Mondays. Dr. Rege and her nurse saw me today before my treatment. Everything looks good so far. Have to put Aloe Vera gel on my radiated site twice a day. I hadn't been doing that. They gave me a pink bag for breast cancer awareness month. And a bracelet that someone had made. Really pretty!!
One of the radiation computers was down today, so I waited over an hour for my treatment. Once I got in there, I was zapped 6 times. Same as before. The radiation tech (or whatever his title is) told me that the rays are x-rays and we had a discussion about how "long" the zaps are and why... Pretty technical stuff.
The kids at Kamiakin and Southridge are doing a "Link" on Wednesday. They're going to make a chain of people from one school to the other. Taija tells me that they need 3,600 people to make the distance. Volunteers are welcome! All this is to raise awareness of breast cancer.
I'm still confused as to why breast cancer gets all the attention over other cancers. A lady tried to explain to me today that it's because breast cancer is very invasive and causes so many deaths. I will have to research this.
It's been an exhausting week being back at work. And my eyes have been running! I promise I'm not crying! At least not today. After work Monday I was very emotional and cried for two hours. Not really sure why - just over-tired, I guess.
Monday, I also got a digital mammogram - they take much longer than regular ones. After being kneaded, squished, and rayed, the technician showed the results to the doctor. After a bit, she returned with Dr. Weighall in tow. I thought for sure if he was showing up, the news must be bad, but no: things looked great!
Wednesday, after work, I went to the Cancer Center and got marked up again and x-rayed. This was their final check before radiation started - which began today.
Every day now after work until December 3rd I'll go in to the cancer center, put a hospital top on, lie down on a table, get lined up according to my tattoos, then lay there for about 8 minutes. The hardest part is not getting to move! I can't even itch my nose!! I try to concentrate on looking at all the colorful ceiling tiles - yesterday's room had some from Kennewick High. This room today had a sign that its tiles were from the boys and girls clubs. They had lots of "Be Happy" phrases everywhere. So, I took their advice and am. Just tired, though.
Stephen made it home last night from boot camp. We picked him up at the airport about 8:30. He's turned into a regular gentleman. At home he asked permission to open the fridge and get something to eat. I can get used to this!
Kyle and Dad made it back from boy scout camp a few minutes ago. It must have been cold. Kyle had on 3 coats and said he cried this morning. (Just like us here at home with the thermostat not working properly.)
I am getting myself ready to start back to work on Monday. My emotions are swinging around like a trapeze artist. Dr. Chenal's office didn't get back with me (I gave them notice on Wednesday) about the note I need saying I'm healthy enough to return to work. I guess I'll have to get that Monday after work and after my mamogram at Kadlec.
Watched Conference this past weekend. Last time it was Conference - six months ago - the kids and I were in Salt Lake watching it in person. And this cancer was just a mystery lump that was most likely just "a cyst." I still don't look at it as being so horrible. Somehow in the past few years I've managed to survive knee, back and wrist surgeries, a hysterectomy and a broken leg. I've learned to manage my Type I diabetes throughout it all as well. And now this taxotere routine is miserably predictable; but Taija pointed out that it's Almost Over! I need to be reminded frequently as I wade through the next few days of aches and pain, nasty taste buds, ugly fingernails and sluggish sleep.....
Friday, I went to the radiation side of the cancer center. Larry the Simulation Guy took me back to a room that had colorful ceiling tiles (courtesy of one of our middle schools) where I got my photo taken, reversed my gown - ooops - and waited for Dr. Rege to come. She drew all over me with a black marker - up my neck, down my side, around my chest, etc. Larry taped wires over the markings and made a template, then put me through a CT scan... and got more photos (aaagh!) Finally, he daubed ink at the top and middle of my chest and on either side, then poked the areas with a needle - my tattoos! (No, he wouldn't do hearts or smiley faces...) In a week or so they'll call and set up my radiation times.
Next Monday I'll be back at work. Oh, boy! Wish I had my hair back, though. The nurses said to expect some fluff in a couple months. I can't wait! (A side note: My super-de-duper insurance has an exclusion about wigs.... they won't pay for the one I bought last spring.)
Just got home - after 5pm. Sharel took me to chemo at 9am. What a sweetie! It was A LONG day! It's my own fault, though. I finished chemo at 1:30pm - which I knew would be the case and then I had a 3:30 appointment with the Dr. Rege about my radiation which was in the same building. I had decided ahead of time to just hang out there for the duration. I will see her again on Friday. I had asked earlier if I could hang out in "my chair" until my second appointment. It worked out okay. I read and napped. Then Heather took me home. And I've FINISHED chemo!
Afterwards, the nurses sang, "For she's a jolly good fellow..." and gave me a card and a bottle of sparkling cider! They are so good to me. With my personal chemo nurses - Laela and Gloria
I found out that I'm not "finished" with them yet, though. I meet with Dr. Chenal in 4 weeks. (Have a CT scan in 3 weeks to see how the cancer looks.) I'll have more labs then and then I have to go in every 4-6 weeks to get my port flushed. They will leave that in for about a year. (As I've noted before, I Do Not Like my port!) I didn't realize there would be on-going care. It made me weepy to think of all this additional "stuff."
And that isn't all the "stuff." Dr. Rege wants me to have a mammogram (I'm doing it at Kadlec in 2 weeks) and more blood work and the appointment on Friday is for the "simulation." I think that means I'll start with them making forms, etc. I'm supposed to begin radiation within 2 weeks. That will be daily for 6 weeks. (The side effects will mainly be skin burn and tiredness. I think I can deal with that! Chemo is supposed to be much worse than radiation.)
So you don't think I'm always pathetic and miserable, I thought I'd share that things are going really well today. Heather and I got out today (and somehow two packages of Little Caesers breadsticks joined us for lunch!) I read a really good mystery book today (The Keepsake by Tess Gerritsen.) I've watched Heather's hyperactive kitten race around and around and around. And, my innards are HEALTHY today! Yea!
I'm just lacking in energy. I think I turned into a slug with this last treatment. (Slugs are hairless and slow and lay around a lot, yes??)
Last night I got a phone call from Carol. She arranged with Susan to alter Taija's homecoming dress - yea! And at the talent auction, she was the winning bid for April's "Hair Styling..." which she donated to Taija as well. Looks like my little lady will get off on her first date really well-prepared!
The last couple of days have been hard. Not feeling very well. But, in spite of that I had made it my goal to be ready to return to work Monday, October 13th. I've been trying to put forth more energy and doing more - walking around the block, etc. But it just seems to backfire. Today, in tears I prayed for help and laid down; wrapped myself in the afghan Mom just sent. And wouldn't you know, she called right then. Just when I needed it most! Mom knew to call and Dad prayed for me and I'm doing lots better. My own miracle! God certainly is aware of us, even all our minutae! Thank you for your warm thoughts and prayers :)
I think I've been asleep for about 3 full days now. I've been up long enough to eat and run to the restroom, but am soooooo sleepy, I just crash again. I guess it's the kytril and phenergen (anti-nausea meds) combined with the chemo and pain medications.
Yesterday, Max took Taija out looking for a homecoming dress for next weekend. That's how out of it I am! They came back with a pretty dress that needs some altering.
Sharel took me to and from chemo #7 today. Thank you!!!!! So far so good. I didn't get to sleep until 5:30am - the steroids keep me wired. My blood pressure this morning was 156/80 - it's NEVER ever been that high - even when I was in the hospital last week with the kidney infection. The nurses said it might be the steroids and only getting 1.5 hours sleep this morning/last night.
The steroids have also caused another trauma in my life. I realized last night (when I wasn't sleeping) that due to the steroids, I will not be able to compete in the 2012 London Olympics. Not that I was making plans, but to know something is completely off-limits now was a bit of a startle. (As I see it, even if my blood doesn't show the steroids by then, my almost-existent transparent hairs would show that I have used them... sigh...)
I tried to get out of it. My tooth has been aching for over a week, so when I went to the dentist, I fully expected him to tell me I needed a root canal. ANYTHING to avoid having treatment #7!!! No such luck. The x-rays were fine, he ground down the crown some and said it may have been throwing off my bite which in turn caused the pain. So, looks like I'll be pumped up with Taxotere again tomorrow after all. I've even started the dexamethasone (steroids) like a good girl....
Home sweet home. I made it home last night (Thursday) about 8pm. The doctor had come by and "released" me about 5pm, but you know how things take time.....
On Wednesday, I didn't see a doctor until 8pm. He told me that he needed to talk with a urologist. So, on Thursday when I saw Doc Budweiser again (I kept looking, but couldn't quite catch his entire last name... it was something like Bun...weis...) he told me that he had talked with the urologist (who has an equally unpronounceable name) who told him that sometimes with chemo, a person can get "uric acid" stones in the kidneys. He said I may have had one which would explain all the blood and the pain in the right side. Well. I don't want to do that again. Hope my body has it figured out how to avoid future occurrences.
My chemo nurses were concerned enough about me when I didn't show up on Wednesday (Dr. Chenal forgot to tell them about my hospitalization) that they called Max and asked what was going on. Then on Thursday, Diana - Dr. Chenal's physician's assistant - that I see every other visit - stopped by and checked me over to make sure I was doing okay. She was so nice. Dr. Droesch who did my cancer surgery saw my name and stopped in to check on me, too. He said that he would be seeing me many more times in the future as he keeps tabs on this cancer.
Cleta came by on Thursday with flowers. So sweet! Tracy, Teresa and Sherry from Kamiakin's life skills class - where I will eventually get back to working - stopped in on Wednesday and chatted and brought a plant and the funniest get well card. We laughed for two hours. I was very well-taken care of during my stay at the hospital! And am VERY glad to be home again... Where I will wait for chemo #7 to take place NEXT Wednesday (the 17th.)
p.s. I have a VERY VERY sparkly clean shower and bathroom since Kathy stopped by and brought her bucket of cleaning supplies. YEA! It hasn't sparkled like this in years! THANK YOU!
Help. I'm being held captive here at Kadlec Hospital. Can't be released until my kidneys start behaving - discard their infection and lose some inches!
I figured I had some kind of urinary tract thing going again Monday. Drank water by the gallons. Didn't do the trick. Tues. morning at 4am I woke and was in awful pain in my right side. I got in to Kania Clinic as soon as they opened. By then I was throwing up and my "sample" was dark brown. The doctor told me to go to the emergency room. I chose Kadlec and he called them and sent paperwork with me. When I got here at Kadlec, I was treated like royalty! I figured it was because the clinic had called ahead. Nope. Each of us was given his own wheelchair as soon as we arrived and after visiting a triage nurse, I was shown a room and was seeing a doctor - all within 45 minutes! I am still in amazement! This is NOT the treatment we've seen elsewhere!
They gave me medication for the kidney infection and did a CT scan, since they were wondering if the pain was from gall stones, kidney stones or appendicitis. It showed that my kidney was enlarged and infected. I guess the doctor took one look at this bald diabetic with a kidney infection and decided to keep me as an unusual specimen or something, cuz it's Wednesday - after 2pm and I'm still here. Haven't seen the hospitalist since last night when I was admitted.
One of the nurses here said that I may be here a few days. Sigh. This was NOT in my plans. I was supposed to teach the lesson at the Daughters of the Utah Pioneers meeting yesterday afternoon. And take Taija to her new job. And get ready for chemo #7 that was supposed to be today.
Actually, I have to confess. I just wasn't getting enough attention. I had to do something drastic to keep the focus on ME and this was it - coming down with a grand kidney infection. They're giving me IV's and being generous with the Ciprofloxacin. And feeding me well. And I'm sleeping a lot. And feeling special! And my family is being taken care of extra well by grandparents (brought pizza last night!) and our dear Relief Society President!
A few numbers: *21 - the number of times I was poked, prodded or wakened from being admitted at 4:30pm until 5am this morning. Even more since then. They really like my blood; they must have some caged vampires they're feeding. *Two - number of chest x-rays they gave me - at 8pm last night (I thought my kidneys were on my right side - with all the pain???) *Once/day - the number of pain medication doses I am allotted (they called the doctor and made some adjustments) *Twice - the number of times Heather has visited me today. She came back with my laptop and toothbrush and insulin pump supplies. She's been very caring and helpful - what a sweetie! *40 minutes - amount of time between bathroom visits (with the IV going, I keep running!) I figured out how to unplug the IV and get around and back and replug it rather than waiting for the nurse assistant to keep helping! *3 - number of hospitalists - doctors - to see all us patients in the hospital today. Nurse said I should get a visit by 5pm. (He came at 8pm!)
Right on schedule - my hands are reacting to the Taxotere just as they did last treatment. They're red and itchy and puffy. Next will come the peeling. (P.S. My hands never peeled during this treatment! I guess giving me 10% less medication was the answer to that!!)
I'm not very energetic lately. I spent all day yesterday in bed sleeping. Did some of that today, too. My blood sugar levels are through the roof. I can't quite figure it out since I haven't had the steroids in a week.
I got some of my scrapbooking things organized this morning while Renee was over. That really needed doing in the worst way! I'm torn now between traditional scrapbooking and digital scrapbooking. I love both.
p.s. Have you ever had your tongue "twitch"? I've gotten used to my limbs acting up (RLS, etc.), but my tongue?
So, here's my editorial from Sunday's paper. I stuck with a photo with hair - the same one that's to the right of this blog, in fact. (p.s. Don't be too disappointed that my opinions are so inane. Max said I probably wouldn't have written it if I hadn't been having chemo treatments!)
It's been noted by a few of you in letters to the editor that Kennewick's Fourth Avenue is pretty lumpy. What many fail to realize, however, is that it's SUPPOSED to be that way! Don't you realize that we pay good tax dollars to maintain those speed bumps/dips disguised as pot holes and road patch? It keeps traffic to a minimum, eliminating the need for expensive stop lights. It slows down traffic which keeps the neighborhood children and pets safer. So please stop whining - travel Tenth Avenue or Clearwater if you need to cross town. Leave Fourth Avenue to bicyclists wanting a true off-road experience. Or to those pregnant women wishing to induce labor. And to me so that I can cross town without stopping at dozens of red lights!
Just got an e-mail from the TriCity Herald. I am going to be highlighted in Sunday's Opinion Page for "Editorial of the Week." Can't decide whether to send them a "before" photo with hair or one of me BALD. Check it out to see which I choose!
Heather took me to my sixth chemo yesterday - only two more to go. The next one on Sept. 10th. Dr. Chanal gave me 10% less Taxotere than before to see if my hands do any better this time around. The nurse assured me that even though it was less medication, it would be just as effective. I hope so, I don't want to ever go through this again! (I have to confess that the palms of my hands are finally peeling. Sigh. Here I thought I was going to avoid that completely.) Nurse Gloria also said she loves my port (I hate it because it has a large red scar on it and it sticks out so clearly) she says it's really easy to access. Grumble, grumble, grumble.
My parents - ever the studious ones - found an article that mentions Paxil can lead to 50% more cancers. I took that for two - three years. Can I blame the breast cancer on it? I wish I could pinpoint exactly what caused it so I don't ever get it again.
Our ward has brought over meals this week. It's been so NICE! I love not having to cook. Maybe I should hire a cook when I'm rich and famous. (Not any time soon, I'm afraid.) In the meantime, I'll be working on training the kids. (A very hard thing to do since they're all ADD/ADHD and end up forgetting to add the main ingredient, or don't wash the baked potatoes, or get sidetracked and we eat at 8pm.....)
Max is leaving early in the morning to fly to Atlanta to see Stephen graduate from Basic Training. He'll be back Monday. So we'll have the whole holiday weekend to ourselves. Stephen will be staying in Atlanta until October 10th to get his IT training. Max is under the impression that he may get sent to Afghanistan or somewhere once he gets back. I haven't heard any of those details myself. But it's been so nice and "quiet" here with him gone. (He's an expert at stirring things up when he's here.)
While we were out getting some school things Monday, I tracked down some cotton gloves. I wear them when I can... Keeps me from picking at my peeling skin - and noticing them in general. I was surprised that I had the energy to take the kids out on Monday to shop. They each admitted that they'd been praying I'd have enough energy - what angels! Of course their prayers were answered. (After running a few errands on the way to the mall, I sat in the kid's play area while they did their shopping at PacSun and Penneys.)
It's a good thing I have such a large stash of pillows. My head is so hot when I try to get to sleep at night. I flip sides of pillows every couple of minutes, then switch to a different pillow (about 7 of them) until I finally fall asleep (about 1:30am most days.) I explained to the kids - again - that I need the extra hour of sleep in the mornings and they've been better about quietly getting ready for school - after doing their paper routes - until 7am when it's family prayer time. Once I'm awake, I can't sleep until again 1:30am. I heard it's the steroids that keep me wired. They're affecting my blood sugars again, too.
I talked with Tracy who is substituting for me with my student at Kamiakin. Johnny is doing great. They survived without me. Yea! I'll be seeing them -hopefully- the end of September.
Friday, Max and I celebrated our 29th Anniversary. Yea! Because I didn't get a treatment this week, I felt confident that we could do some travelling with the boys - to my very favoritest of favorite spots - Mt. Rainier and the Grove of the Patriarchs. I LOVE those old trees. They give me strength - knowing they've endured for over a thousand years. (We found some heart-shaped greenery on the pathway - appropriate for our 29 years of marriage!)
We met up with my friend Renee and her family and their foreign exchange students. We had lunch together at their camp spot at La Wis Wis, then went our separate ways to explore the most beautiful place on earth! We drove up to Paradise and then to the Grove of the Patriarchs.
Then home. I was pretty well exhausted by then. I lounged around in my jammies all Saturday to recuperate.
My left pinky's fingernail is coming off. It doesn't hurt, but I wonder if others will follow its lead. At least my hands are looking better. Still peeling, but they don't look so scary. I attended our life skills classroom get-together last Thursday and the new teacher and his wife had seen others with cancer go through this hand stuff, so it must be pretty common.
Heather brought home a kitten last week. It's pretty entertaining, to say the least. Between it and my genealogy projects and the Olympics, I'm keeping busy. The kids have been extra helpful this week in doing their chores - alleluia!!!!
Dad called me today and cheered me up. I really needed it since it was cloudy and rainy today - I have a hard time managing when it's not sunshiny out. He told me about his dad who was a sheep shearer (and coal miner.) He said Grandpa Eldon Harward was allergic to the sheep's wool and that his hands and arms would get covered with sores during shearing time. The sores would bleed and look horrible. Dad said to blame him for my rash/skin woes. When I told him it wasn't on my palms (though my fingers are now peeling), he said that Grandpa's never got on his palms, either. So, I inherited this great miracle skin on my palms. I'll be sure to thank him for the mixed blessing when I get to Heaven!
Lorna graciously took me to chemo today. I even convinced her to stop by weight watchers first! I had her drop me off at the cancer center since I go an hour early for the blood tests. The nurses were fascinated by the nasty appearance of my hands. I put the Biafine cream on them so that they wouldn't look like I have leprosy. It didn't fool Dr. Chanal. He decided against giving the treatment today. He says my hands need another week to heal.
I was disappointed. Adding a week to my treatment is NOT in my plans! Lorna picked me up and took me home and comforted me while I bawled. I sure am weepy lately. It doesn't help that the steroids I took yesterday kept me up until 4:30am. I was so wired that the Valerian Root didn't work nor my Restless Leg Syndrome medication. I guess it's good that I won't have to take that today & tomorrow.
Another blessing that Lorna mentioned is that this rash/leprosy stuff didn't go to the palms of my hands. Dr. Chanal kept asking and was surprised that it hadn't. Just under my finger tips. I guess that I would really be miserable if it had!
This rash or "Palmar Plantar Erythrodysesthesia" of mine (PPE - it sounds like a Church committee of some sort, doesn't it?) happens when the chemo drug Taxotere leaks out of my blood vessels into my hands and feet. I put an expensive cream on it called Biafine 3 times a day. Since it's very itchy, the nurses said I could take Benadryl or put hydrocortisone on it, too. I've also been putting my hands on ice packs to relieve some of the pain. (Rinsing them in cool water feels great!) Yesterday the skin started peeling off of them - they look scary.
Taxotere also causes fingernails to warp or fall off. So far mine are just sore. I cut them short-short just in case. And my tongue is white. Nurse Gloria said it probably isn't Thrush, but it makes everything taste funny. (Doesn't keep me from eating, though.) I wonder what will happen with Taxotere #2 on Tuesday...
It's hard to feel bad about the chemo treatments, though, when I think of a gal at church whose husband died two weeks ago and left her with 3 little ones. I pray for her several times a day, wishing there was some way I could help take away her pain. I'm doing better after being weepy for two weeks (since Mom and Dad left.)
Did I mention that chemo has done at least one GREAT thing for me? (Besides losing 5 lbs last week.) The psoriasis that covered my legs is GONE! I just noticed this week. Yea!
I've seen some blond hairy things on top of my head, too. Is it new hair growing? Maybe it's just lint that's snagged on my sandpapery scalp. Time will tell. P.S. Anyone want some ripe nectarines? I still have an entire tree full and I can't personally eat all of them myself... though I've been trying!
I got the rash-stuff that I was supposed to watch for with Taxotere. It's on my hands. My hands often ache, too, which isn't fun. I stopped by the cancer center (we were close by for the kids' appointment) and raced in to show nurse Gloria. She took me aside and checked my vitals, etc. since I've lost 5 lbs this weekend due to the diarrhea. They got photos of my hands and said they would call in a prescription for this particular rash and that it would probably get worse before it gets better.
I got some awards with weight watchers today for my newest weight loss. I guess there are SOME good things that come of all this! (But I made it clear to them how and why I had lost the weight!)
I've been waffling back and forth about whether to go back to school (work) when it starts on the 26th or wait until chemo is over at the middle of September. I don't have as much strength as I used to. (Even my purse - the great U-Haul - that I lug around is too heavy for me anymore!) I checked with the school human resources person who does family medical leave. She was so wonderful. (She's new this year. Told me that two of her sisters have or are doing chemo.) We figured out that I should plan to come back to school the end of September. And even that is negotiable. It will be an "extra" month off, and I'll have to pay for the health insurance out of pocket, but I feel better now knowing what to plan for.
My taste buds seem to have been obliterated by this last chemo. I can only taste "salty". My nectarines are finally "on" and they don't taste the same!
I got nauseated yesterday - day #3 seems to be the ominous day for chemotherapy. But, we managed, between Heather, Kyle and I, to shop some specials at Albertsons. I kept a barf bag handy and let them do all the "work." We saved $230 on our shopping spree!
Another reaction to this new chemo has emerged: aches and pains - like you get with the flu. Ouch! Ouch! Ouch! And diarrhea. And, I'm still weepy, which is annoying. I took a call from the new LifeSkills teacher at Kamiakin and ended up breaking down. I'm sure the poor guy wishes he hadn't made THAT phone call!
Mom and Dad left yesterday after my 5th treatment. It's thrown me for a loop! I've had numerous "cries" today. Talked with Mom on the phone a few times. Kept myself busy sorting papers and stuff and doing laundry. Lorna called. So did my cousin Connie from Los Angeles. Twice. I'm getting cared for.
It's probably because I feel so much better after this treatment than the four previous ones that I even have the ability to feel discombobulated! These last four treatments will be Taxotere. I was so worried about starting the new chemo that I made myself sick on Sunday and Monday. I felt worse then than I do now.
I have to take steroids with the Taxotere instead of one of my nausea meds. (And I'm only having to take Kytril - because I'm supposed to - so I'm not so drowsy.) The steroids combat the fluid that builds up around the heart and lungs with this form of chemo. Dr. Chenal cut the steroids in half because of my diabetes. Still, my blood glucose readings ranged from 440 - 560 - 400's (most of the day yesterday) and ended in the 300's. By 1am I adjusted my pump settings and voila! I woke to a reading of 117. It's been normal the rest of today.
I just need to get used to these crying spells. I know it will take me a few weeks (as it does every time I've had surgery and had Mom to baby me!)
Back in June when I began chemo I did an internet search on "Diabetes and Chemotherapy." With all that is out there on the web, I was dismayed to discover only a handful of hits and only one article of substance. The article called the situation "Co-morbidities" and discussed neuropathy (pain in the feet & legs.) Some diabetics get this after having diabetes for years. The article said that chemotherapy can cause this to occur as well. That sums up all that the entire world has published on the subject.
The Diabetes Learning Center had little more to offer. They are aware that the steroids given as part of the chemo throw a diabetic's control helter skelter. With their help, I've been testing my blood sugars every two hours. During the first 8-9 days after a chemo treatment, I also adjust my insulin to carbohydrates ratios. I take almost twice as much insulin with meals/snacks as I usually do. I switch the ratios on my pump back when I start getting low blood sugars, which occur about day nine.
I've been putting the data from my pump into a program. It shows charts and keeps track of how things are going. It looks pretty fancy. There really needs to be a handbook out there for us, though. Surely I'm not the only diabetic (Type I-Juvenile Diabetes) going through chemo. Or am I??? It would include things like how to eat prunes and roughage between episodes of nausea and how much insulin to give for each one. (They're about 5 carbs a piece, but make sure it stays down before administering insulin.) How long to wait for the food to stay down before giving insulin. How to do finger prick tests in your sleep and doing them without gagging at the sight of blood. Knowing if you're racing to the restroom because your blood sugars are high or because you have a urinary tract infection (again.)
Other notes I'd make in general: *you will lose your hair on your head, maybe not anywhere else. *You will be nauseous and even throw up a lot, but you will gain weight due to the steroids. *Take your anti-nausea pills EVERY day, even when you feel great. *You will be cranky, so go live on a desert island away from all annoying persons. *Your hair actually cooled your head off way back when, now that it's gone, your scalp will be hot and it will cause anything that it lays on to get hot, too. *Don't believe it when others say you don't have to shave your legs for the duration of chemo... (I shave the quills off every other day.) *Acquire a collection of light, preferably funny, movies and books - you'll need these for those sleepless nights (unless you're taking the anti-nausea drugs that knock you out, you will NOT be able to sleep)
Beep beep beep - my pump says it's time to check my blood sugars again. Of course, it's 1:27 am, so what else would I be doing?
My computer was hiding these photos, but I finally found them. This is Tracy and Me at my second chemo treatment way back when. She was so good to come and sit with me. I absolutely have the best friends ever!
Today, Mom, Dad and I attacked the apricots - from my neighbor - with a vengeance. We've got some dehydrating and the rest (6 batches) were made into apricot-pineapple jam. What a lot of work! This morning, we also got two of the kids off on a pioneer re-enactment trek for four days (yea!) It took us all yesterday to get them ready. Well, it took so long because I have so little energy. (And Mom had to put a new zipper in Jacob's sleeping bag which turned out to be a sewing nightmare lasting til midnight. And we won't even go into Taija's pioneer-woman costume!!)
I felt bad yesterday - the neighbor cat pounced on a baby robin in our yard and the entire robin clan chased it. We got in on it, too. But the cat came back! She returned several more times and finished her deed while we were at dinner. The poor robins sat on the branches of our weeping birch chirping their sad story until late. I was sad, too, because I just found out that my lifeskills classroom teacher at Kamiakin is leaving. I just adore her and her way with the kids. I worry what I will return to when I finish chemo at the end of September. Another loss is my brother and sister-in-law and their four kids who moved to Wyoming today. And, the kids' doctor (ADHD specialist) is retiring next month. And, Mom and Dad are returning to Utah next Wednesday. What am I to do? I'm savoring every waking minute with Mom and Dad. I've loved having them here. We're sending them home with apricot jam for everyone... (is that kind of like leaving zucchinis on someone's porch??)
I woke up this morning and realized right away that something wasn't right. I've got a raging Urinary Tract Infection. Never had one like this before. I got some good antibiotics and something else for the "discomfort." Heather got me some cranberry juice, too.
Mom and Dad are planning to return to Utah August 6th. Mom's bum knee needs to be checked out. It's been terribly painful for her the past week. I will really miss them. I love their cheery "Good Morning!" first thing in the morning and their love and care throughout the day!
Yesterday I finally got my 4th chemo. It went pretty well, considering all we had to do to get it. I was also told the results of my MRI (on my head due to headaches.) She said there was no cancer, but there is swelling of the cerebral spinal fluid (which could indicate a rare disease, but I don't think it is. Mom insists that I check with my family doctor next time I'm in.) I guess that would cause the headaches - or maybe it's that all 3 anti-nausea meds list headaches as a side effect!
The routine that should have taken place for yesterday's Chemo: An hour before chemo, you have to go and get blood-work done to make sure you're healthy enough to get chemo. Then you have a doctor's visit wherein the doctor or his assistant checks you over. If all is good, you have chemo in a large room with curtain dividers. You can now take the first anti-nausea pill (the 3 pills cost $450 - unless you have good insurance, which I do.) They start the IVs going into my port with saline, Kytril (anti nausea) and throw in some steroids. Next is the red adriamycin which is a very toxic drug that can damage your heart. Afterwards is the clear Cytoxan. This one takes an hour to dispense. When they're through, I get more saline and herceptin (blood thinner). That was the last time I have to do that routine. For visits #5-8, I will get Taxotere, another drug. I have to have steroids with it (day before, day of and day after) which will do a number on my diabetes.
What happened yesterday: Before chemo, I woke and found my blood sugars were in the 500's (normal is 80-120). I gave me a ton of insulin but it didn't work. I changed my pump site and discovered that the canula leading into my body had gotten twisted. No wonder nothing worked. With the new pump site, I gave me more insulin. Blood sugars went higher! After the next try, the insulin did its thing. But, it still was in the 400's for the doctor's lab report.
I told the doctor's assistant about my chest pains and headaches. Shouldn't have said ANYTHING. She wanted to make sure everything was okay, so before chemo I got to go across the street to a radiation place where they checked my port with a dye test. It worked great, but the equipment they hooked up to my IV wouldn't come off and the doctor spent 15 minutes using various tools to pry it off.
Mom and Dad then took me to Kadlec in Richland to get the EKG for my heart (chest pains). That took us forever because the papers requesting the EKG had inadvertantly requested an Echocardiogram and they were booked for the day in that area. After an hour or so, the receptionist got that mess straightened up, I got the EKG and went back to the Cancer Center to get the chemo. I didn't get out until 4pm - though I had started the day at 8:45!
I'm sleepy due to the anti-nausea meds. But am doing well otherwise. We went to weight watchers this morning. I've gained 2 pounds in the past 3 weeks. Decided it must be the steroids I'm on. (But, I've lost over 25 lbs since Christmas!) Then we detoured to Value Village and bought Kyle some shorts and levis (it's his 12th birthday today!) Got some things for Stephen at Target (and smaller pants for me!!!) and mailed him a package. Got home and there was a message from the Cancer Center. Instructions on taking the steroids for next treatment and information about the EKG - fine except for an insignificant finding of "Right Bundle Branch Block" (try to say THAT 10 times in a row!) This block is insignificant (I looked it up on the internet - indicates damage to the heart possibly from previous heart attack) and was actually discovered before my surgery when I had my first EKG in May. So, that's me so far this week!
Ta Da! Look what Mom and Dad finished last week at our house - shelves in the garage to store all our STUFF!!! It's like a miracle happened! THANK YOU MOM AND DAD! BEFORE AND AFTERWARDS!
I tried helping Tuesday this week to put things on shelves, but my body said, "NO!" and began "throwing up." I just can't push myself like I used to. It's as if the chemo dictates: You have X amount of energy - and that's exactly, to the letter, all I can get from myself. Heather wanted me to save today's energy for her. She was going to the movies with her friends. I tried, but by 3pm I had to take a nap and then I just couldn't get it together to go out. Sigh....
A lot of you have asked how I am. "Well, I'm pretty good." That's my pat answer. Nice and simple. Cuz no one REALLY wants to know the monologue that runs through my head:
Good news: *Made it to church today *Stephen is surviving boot camp - had a rough week, but they didn't put him in the brig - this time *I still have eyebrows
Grumblings: (STOP! This is the part NO ONE wants to hear, but it's my reality lately) *The metal taste in my mouth affects everything I eat...
*My toes are always COLD. The rest of me can't decide and fluctuates back and forth between hot and cold - sometimes I'm both at the same time.
*My skin is DRY - lotion fragrances (even unscented) leave me nauseous
*My sandpapery head feels weird and it sticks to my pillow cases (I'm sprouting porcupine quills up there!)
*One or all of my medications give me headaches, eye aches, chest aches, "the willies" (Restless Leg Syndrome) and "the jitteries" (Restless Whole-body Syndrome)
*And Lastly and most grossly: having gas and constipation as a side-effect of every single one of my medications means I get to down prunes, milk of magnesia, etc. while I'm nauseated (Yes, the alternative - Senokot - sends me into spasms of cramps which in turn leads to explosions from both ends)
Mom and Dad are building shelves in the garage right now. (You know how we Mormons have all these buckets of wheat, beans, rice and potato pearls stocked up!) It's looking super so far. The kids were a tremendous help and threw - literally - all the garage contents all over the front lawn. Can't beat help like that. People have stopped by asking if we're holding a yard sale... We should have told them, "yes! Please help yourselves..." It's actually embarrassing to see all the junk, I mean stuff, we've accumulated. Hopefully, not all of it will make its way back into the garage.
I'm still practicing not puking this morning. I've managed to get down some toast and watermelon. I've dreamed of tapioca pudding... enchiladas... funny how I can crave things and be nauseated at the same time.
I also walked around the block this morning. Sometimes I can make it around twice, but if I get too tired, I get more nauseated.
And P.S. The MRI went well yesterday, I clutched my barf bag the entire time and luckily didn't need to use it. If I didn't have headaches before, I surely do now with all the noise that exam produced!!!
I am 3/8ths of the way through chemo. Yea! The side effects are headaches, constipation, metal taste in my mouth, nausea - of course, my hair loss, high blood sugars, heartburn... I am getting an MRI on my head this morning due to the headaches. The doctor wants to be sure it's not something else. Of course, that sets my mind to wondering..... I won't know the results until my next chemo/doctor appointment in two weeks. I'll practice assuming it's the medications - actually, a known side effect of all 3 anti-nausea meds.
I take my anti-nausea medications to my chemo appointments. This time I thought I would be so clever and put everything in my purse... To keep from looking like a bag lady with several bags in tow. The problem with that was that everything kept falling out. I lost my Emend ($450)and Phenergen (not $450) both anti-nausea meds, a ball of yarn and crochet hook and my blood glucose monitor... I didn't realize this until they asked me to go ahead and take the Emend. (They wait until after the lab report and the checkup shows that I'm healthy enough to get the chemo before starting the anti-Nausea medications.) Horrors. My purse had coughed up its contents and they were nowhere to be found.
Mom had dropped me off, so I called her and she found the Emend and glucose monitor under the seat of the car. The other two items are still missing. I was upset and crying over the Emend (and just being in the cancer center now sets off my nausea!) so nurse Gloria gave me medication to calm me down. It put me out and I woke after it was all over. Phew! (Gloria made sure that Mom - not me - had the Neulasta shot ($2,000) to take home. I take it 24 hours after the chemo to build up my white blood cell counts.)
Mom and Dad have taken on the goliath task of building shelving units for our garage. I can't believe it! They got the sheetrock up yesterday. Wow!!!
Breast Cancer isn’t for Boobs! My friend Carol in Colorado told me this phrase – she, her sister and her cousin are all in various stages of treatment for breast cancer. While it is totally unfair and unthinkable that so many, so close would go through this awful predicament, it is also cheering when someone knows exactly what it means to be nauseated, tired, hairless and craving an oddball item of food all at the same time. She’s been a well of wisdom for me! So glad that her last treatment is next week (I’ll bet they sing “For She’s a Jolly Good Fellow” for her like they do for those here at the Tri Cities Cancer Center when they “graduate.”)
Our air conditioning gave out on the 3rd. It was hot all day. Very hot. I sweat an awfully lot now that I am bald. Mom and Dad took me out to Panda Express (where it was air conditioned!!!) … mmmmmm. Afterwards, we bought blocks of ice to put in front of our fans to help cool the house. Thankfully, we found a repairman to come out and fix the problem the next day – what a nice way for him to spend his 4th of July holiday…
On the 4th we went up to Dayton to spend time with the Rickords relatives. I was worried that my baldness might disturb the younger ones. Nope. Hannah and Lynae painted my head in red, white and blue! In turn, I painted stars on their cheeks. We were very patriotic! Later, the boys and I went to see the fireworks in Pasco. I love the colors, the noise and the WOW!
It’s gone. After shedding heavily for a week, Heather shaved the rest of my hair off around 11:30pm Monday night. Just a bit of peach fuzz left. (Tues. pm: Max was gracious enough to take the electric razor to me... )
The dogs barked when I came in to go to bed! The cat ignored me. I look like the King of Siam in “The King and I”. Mom says that I was brave. Was I? Really tired of changing clothes and sweeping my bathroom floor maybe… My bed is full of hair. So is my laundry basket. Have some vacuuming to do.... The McFlurry is gone, too. Did you know that Oreo McFlurry’s turn purple in your stomach? I HAD to have one, though! Max took me out tonight to quell my doldrums… This makes it one more day of nausea than last treatment. Have I changed much in 48 years???
You know what's Amazing? Considering all the buckets of hair I've lost (and that are floating around the house) there's still more on top of my head!
Amazing is also the word I thought of when we got a phone call from Stephen today who's at army boot camp at Ft. Benning, Georgia. It's AMAZING that he thought to call HOME in the first place. Caller ID notes that he tried to reach us 6 times while we were at church. I guess he forgot about the 3-hour time difference.
My parents looked like angels to me today. They came in dressed for church - Mom had a pretty white blouse on and Dad had on his white Sunday shirt. With his snow white hair, I thought of heaven! They were in the congregation, too, when I led the Sunday hymns this morning. I broke down and sobbed during the sacramental hymn: "I Stand All Amazed." There I stood hiding in my fluffy wig, inadequate in every way as the hymn's strains spoke the absolute truth: "I stand all amazed at the love Jesus offers me, Confused at the grace that so fully he proffers me. I tremble to know that for me he was crucified, That for me, a sinner, he suffered, he bled and died." I am AMAZED that He loved me enough to atone for my sins. I know that He has prepared a way for me - for all of us - to return to live with Him again. My inconveniences are just temporary, but He'll help me through them. Amazing!
Hair is still coming out. Lois said 2-3 weeks, Teresa said 2 weeks...that's how long they waited before shaving it all off! My hair (scalp) actually hurts - like when you've pulled it up into a tight pony tail and then after being up all day, letting it out... ouch! Ouch! Ouch! Lois also mentioned that chemo causes your memory to falter. That will be a good thing when it comes to some of these side effects.
I ordered some ST37 - an oral rinse that Mom discovered while living in Tooele, Utah. Lots of folks there use it for cankers, etc. My mouth is dry and mouth sores are due to attack soon, I know that will be on my list of forgettable side effects. I've started chewing gum to help my dry mouth, too, (so if you mistake me for a cow chewing its cud, you'll know what I'm up to.)
June 24, 2008 My hair started falling out this morning. I was lounging around talking with Mom and reached up to brush some hair out of my face and instead came up with a handful of maybe 30. Each time I tugged, I got that many more. AAAAAGH. This wasn’t supposed to happen until the third treatment – and I just had the second one yesterday. I cried. Mom cried with me. My sister called and we all three cried! I finally got up and dressed and we went to get my hair cut. It’s shorter – like a guy's. I sobbed through it all. Lisa, the hairdresser was so sweet! She comforted me. When it was all off, she suggested we add some color – PINK! I agreed. Then Heather wanted pink hair and even Mom got some pink. Mom and I just have a touch. I might go back to get more done, but I’m not sure how long there will be hair to color… it might all disappear this week.
Next we stopped at Fred Meyers and checked out the hats. I found two identical ones that I’m in love with. One is light beige, the other red. Heather calls them “newsies” hats. I guess I’ll wear them around when I don’t want to do the wig thing…
June 25th - 8:00pm I've only been awake a couple of hours today. We got some cherries at a place on tenth avenue. I love them, but only ate a few. Too much work. I'm too cold. Too sleepy. My hair hurts. I've been a bawl baby today. (Stephen called tonight. He's in Atlanta, GA on his way to Ft. Benning (sp?) He says it's hot. I'm NOT bawling about him being gone, in case you wondered. It's nice and quiet around here now. Biggest discussion going on is whose turn it is to read the last Stephanie Meyers book that Lorna lent us...)
I've read a lot about cancer lately. Many authors have expressed the notion that stress either causes or accelerates cancer growth. So, is it like Mr. Steed, my high school chemistry teacher, told us: "Living causes cancer"? Maybe it does, but stress is such a part of life! Good stress. Bad stress. Like, right now I have these stressors in my life:
1) Stephen is getting ready to leave for boot camp. His plane leaves Monday @6:30pm 2) Max's back is hurting him from laying carpet for the last couple of nights - after working all day 3) We are short a vehicle since Stephen wrecked our Taurus last week - Max is planning to look into assessing the damage tomorrow (Saturday) 4) Our vacuum died this week (Max is going to fix the cord on that tomorrow, too) 5) "Hunter" doggy got neutered 2 days ago (Taija's doggy, "Girlfriend," was spayed a couple months ago) but they're still cavorting around and as Mom Harward put it, "putting on an x-rated show for us all day long" (Maybe the vet didn't do the job right? Maybe it takes a few weeks to tone down the hormones?) 6) The vet's prognoses on our kitty Monday: fleas. So we had to treat her and the dogs and wash and sanitize every surface and every stitch of bedding in the house, etc. etc. etc. etc. 7) Our septic system is misbehaving - again - and probably needs replacing soon (do you think we could shower at the playground's water park?) 8) My (Type I) diabetes is really messed up big time with chemo - BG #'s topping at 300's - 500's and... 9) chemo therapy #2 (who has time for this?) is Monday at 10:30am - I get nauseated just thinking about it... (but Tracy and Teresa are planning to come and visit me then, so that should make it easier!)
I don't know if getting rid of all of the above would have changed anything. I might get bored if things weren't crazy all the time. I'd have to make up something to get attention - like, you know, get cancer or something.
I've felt so good the past two days! Yesterday we ran a bajillion errands: Got Mom and Heather new cell phones, picked up a carpet stretcher for Max, took the dog in to get 'fixed'... Got a new plecostemus (algae eater) for our aquarium (I had been searching for one that was the RIGHT size...)
Today we cleaned out the garage and took 5 boxes and a couple of bags of stuff to St. Vincent's. We took a few boxes there yesterday, too. Today's donations were some of Kyle's toys (shhhhhhh, don't tell!) I got exhausted and sweaty after a couple of hours' work.. which led to a nausea episode... which led to a tearful breakdown. I hate feeling out of control!
After a rest (sorting Kyle's toys and reading part of Stephanie Meyers' second vampire novel) I felt much better. I went out after dinner and trimmed some roses until I was caught and ordered back inside. (Without much of an immune system, I'm not supposed to garden in case I get scratched and infected....) I need to remember my cousin Carol's advice. She's a breast cancer survivor of 20 years - she told me that during her chemo she didn't get out much, just kept close to home and nurtured herself. I just have such a bad habit of wanting to do EVERYTHING. Sigh....
Max has almost finished installing the last of the carpet. Now all our bedrooms are redone. They look NICE. But, I hope that the new carpet smell is gone by next Monday (chemo #2) when I know the smell will drive me crazy! (Carrin Rhoten called me last night to offer her husband's carpet-laying skills. That was soooo nice of her! I get cards and calls so often and I love everyone's warm thoughts and prayers.)
p.s. Wore my wig yesterday. It eventually fell off... I DEFINTELY need more practice!!
I've survived to tell about one more day. I said a SWEAR WORD in my head on Saturday about this chemo therapy stuff. It's bad news! I have a week before I have to go back in again. I'm afraid I'll be kicking and screaming all the way....
On a good note, I didn't get nauseated today until after 1:30. We went to the store even. That was fun to get out of the house. The kids are officially "out of school for the summer." Stephen leaves for basic training next Sunday... Jacob and Taija have summer school starting tomorrow. Heather works nights, so she sleeps during the day. It will just be Kyle, Mom and Me at home most of the time!
The genetic counselor called me on Friday. She told me that the tests came back and I am BRCA1 & BRCA2 negative. That is good, since it means I don't have the hereditary mutation. We both expressed surprise since I told her of two more cancers I've realized in my family... a cousin with breast cancer and my dad's colon cancer. She said that she would call me about another testing that came out last year.
I think it's Saturday. So, yesterday (no, I didn't go in to work) I spent 4 hours at the cancer center. I was dehydrated and had to be given IV fluids (that takes 2 hours.) I have been given strict orders to take the anti nausea medication on schedule regardless of how I feel at the moment. (Thurs. and Friday mornings I felt okay until about 10am, so I didn't take the medications until it was too late.....)
My brother-in-law Wayne - the pharmacist - warned me ahead of time that chemo would be hard on me for two reasons: 1) I'm female. We don't do so well in the nausea department and 2) I'm Mormon. Mormons don't drink or smoke and therefore their bodies aren't accustomed to being "poisoned" and hence the nausea would be unaccustomed. ha! the joke is on me.
Really, though, this nausea is obnoxious. Smells, thoughts, pictures, situations all make it worse..... I'm sure that I will be the envy of my weight watchers companions.. I'm down several pounds. Mom is being my guardian angel - nurturing me with whatever I might be able to keep down (Sprite, spaghetti, grapes!) Stephen had an accident on Tuesday and our car has to be replaced - all the talk about "what to do" and "what kind of car do we want?" also makes me nauseated...... bleah! bleah! bleah!
The CT scan results were revealed yesterday amongst all the waiting around. They state that my lungs are great! my bones are great! My liver and spleen are great! My stomach and abdomen are great! Apparently, there are just some lymph nodes in my left armpit where the other cancerous ones were that are showing abnormal. The chemo & radiation are supposed to take care of them..... I will get another CT scan when the chemo is done.
I've been in a fog the past couple of days. Tuesday my blood sugars were non-stop HIGH. No amount of insulin helped! I changed my basal settings on my insulin pump to help cope. Carol Hansen brought us over some dinner. It was wonderful and very well-timed. Lorna Mikkelsen brought me a novel to read!
Yesterday...., I remember getting phone calls from a half-dozen people wishing me well (don't ask me who just yet, I'll have to think about it.) Other than that, I was nauseated and had to keep up on the anti-nausea medications which made me sleep... Unfortunately, I'm taking more anti-nausea medications today. It is so unpredictable!!!!! I've taken another day off from work. Only two more school days left 'til school is out.
I go in for these treatments every two weeks. Eight treatments altogether. Then, I will do radiation when that is finished. Radiation is every weekday for about 6 weeks. Tomorrow I will find out more about the elusive CT scan results. I think that the doctors must love keeping their patients in suspense!
We made it in from the blustery weather (been this way since January) to the Cancer Center at 9:00 am sharp. We had discussed being late and wondering if they'd reschedule my appointment (like 2 weeks ago), but no such luck. We arrived on time... and waited almost 25 minutes staring at the aquarium.
Mom and I were taken to my own little room. Walls were decorated with pretty quilts. A chair, IV stand and tray added furniture to the room. The focal point was a brown vinyl recliner. It was very comfortable.
Nurse Leila checked my vitals and swabbed my port site. Told me not to breathe on the site since it needs to stay sterile. I wrapped myself up in the cozy blankie Aunt Marilyn sent me (Yes! I remember to feel her hugs everytime I put it on!) Leila started up the IV and flushed me with saline solution both before and after the treatment. First into the IV was more saline (clear), next up was some Kytril - a clear solution that is an anti-nausea medicine. I'll take the pill form twice a day for several more days (as well as Emend (aprepitant) once a day and Phenergan (promethazine) every 6 hours if I still feel sick.
Next in the IV was THE CHEMO. The first drug was red. It was called Doxyrubicin, also known as Adriamycin. This IV took about 15 minutes. When it beeped, they replaced it with the Cytoxan (clear). This one took about 1/2 hour or more. I had watched a video for first time patients and then Nurse Leila talked to me about the side effects of both drugs. She told me to stay away from crowds (school??) because my white blood cells (among numerous other things) are killed off or stopped being produced during chemo.
I didn't feel very different during this time. My chest got tight during the first chemo drug, I got woozy at the end of the second one. Then I was finished. Voila! No problems. So far I have no green skin, purple fur or horns. I understand it's the 3rd day (Wednesday) that I may experience some problems. It took about 2 hours or less. I was surprised. I'd heard that it was much longer.
I go back tomorrow for a Neulasta (sp?) shot to build up my white bood count. And, my diabetes went wacky tonight. I have to keep tabs on it since it apparently goes HIGH after chemo treatment. I must finish drinking my 3 quarts of water, too. (Only 2 more to go.)
Teresa from school called and checked up on me while Mom and I were at Highland Health Food Store (we went there following my appointment.) She called again later. What an angel to be so caring! We called several people to tell them the good news. I know that all the many prayers and Max and Dad's blessing me yesterday and Dad Rickords' special prayer at the family get together made this possible!
On a scale of 1-10, I now feel like an..... 8 (headache and touch of nausea which might be from the high blood sugar. Also, hot flashes every so often. Whine..whine..whine....)
Tracy kept Sherry and I laughing today on the transit (city) bus. We were taking our Life Skills (handicapped) students out in the community as we do every school morning for a couple of hours. The boys were asleep for most of the journey. Tracy told us about her experiences growing up Catholic and attending Catholic school. I laughed so hard about her "confessions" that I cried! It did us good to laugh:)
We had a "graduation" party for our Life Skill's sole graduating senior today. After feeding my student his cake and ice cream, I left. Lots of tears on my part later, wondering if I'll make it back for the last week of school. I have planned to take Monday, Tuesday and Wednesday off next week. (School doesn't get out until the 16th here - due to all our "snow days.") I am wondering how the chemo will affect me... The wig shop staff indicated that patients come in looking "green" or "ashy"... Speaking of which, I need to call the wig shop because I saw their number on my caller id.
Went to nephew Jonathon's graduation tonight. He was salutatorian and gave a great speech.
Other notes: My sloshing and leaking appears to have quit. But, I am lumpy and bumpy all over. (Teresa said that she told her doctor that she looks like a road map with all her scars. I am starting to feel the same - but this is one map that feels like it's been left out and run over by a bus. Time for bed.)
p.s. Tonight after the graduation, my sister-in-law and I were discussing the benefits of losing your hair. We decided that 1) I will be "cooler" in the summer. 2) I will keep the sunscreen products in business as I cover my baldness daily. And 3) I definitely won't have to worry about getting head lice from anyone!
I survived the CT scan this afternoon. Mom picked me up at school and chauffered me to Kadlec. The worst part was drinking the pina colada-flavored gloop every hour leading up to the procedure. It didn't hurt to have them use my port to insert the iodine. At least now I know that it works.
I've stopped "leaking" (I had to be on my back Sat & Sun due to that un-fun episode.)
Today I went to Weight Watchers and found that I've lost 1.6 lbs. For a total of 20.6 lbs since February. I use the "Core" plan which is just plain healthy eating - fruits, veggies, whole grains, low-fat meats.... I've eaten umpteen pounds of strawberries the last few months. Yum.
Mom bought me a beautiful nightshirt. I love it. Pink, embroidered, lacy... She always knows how to make me feel special. I LOVE having her here. Dad is fun, too. He told us last night that his father's favorite song was "That Silver Haired Daddy of Mine" by Gene Autry. We found it on the internet and listened to it a few times! I love laughing with him and discovering all these treasured nuggets.
Tifiny told me that her two-year-old Justin prays for me: "Aunt Lisa. Aunt Lisa. Aunt Lisa. Amen." Now you know why I'm doing so well!!!
Set my first chemo appointment for next Monday (June 9th) at 9am. Can't wait. NOT! I think of the second-to-the-last Harry Potter book where Harry is feeding Dumbledore that gross potion and Dumbledore is begging him to stop. That will be me! Aaaaagh. Dr. Chenal will prescribe 3 anti-nausea medications for me before I go in. That makes it scarier! I decided not to participate in the clinical trials.
Tomorrow I have my CAT scan at 2pm. They should know the results of that next Monday.
Thought I was doing so well today. Ran errands. Went with Mom to pick up paint. Shouldn't have picked up the paint. Or the watermelon. Mom noticed that I was leaking. Soaked clear through and down my top. Dr. Droesch told me to pull the incision closed with butterfly bandages. And lay (lie??) down and take it easy. Easier said than done!
I just watched "What About Bob?" and I feel like "Bob" - I'm hounding Dr. Droesch whose wife just had a baby and he's supposed to be out on family leave......
I'm a mom, wife, student, genealogist and I love my lap top. I like to laugh and read. And be with family. I did the breast cancer thing in May 2008 - lumpectomy, nodes, chemotherapy, radiation....
Dec 2008 was my last radiation but alas, alak, those tests are not to be trusted!
This past Fall I had a bulging disc in my back. A miracle "pain." An MRI in Sep 2009 showed the disc and... cancer. Did a bone scan and found more. I've broken my right arm - (pathological break a couple weeks ago just for interest), had back and brain surgery most recently and will begin radiation soon. Apparently, the breast cancer was lurking around in my bones all this time and no one figured it out! Good thing God is on board and is taking great care of me... us... everyone:)