Hello, Everybody!

Hope all is well with everybody? I’ve finally got an update for you! I went to see the chemo DR today, and got the scoop on what the future is going to be like, and some options.

If I got it correctly, I’ll be doing an 8 wk series of treatments, once every two weeks. This will be followed by radiation, how much radiation will be determined nearer the end of my chemo. I will also be on a follow up medicine for the next 5 yrs.

I also have the option of particpating in a clinical study being done with a drug that has been proven effective with colorectal cancer and higher stages of breast cancer, and is now being tested on the lesser stages of breast cancer. It is a double blind study, so I could easily enough be taking a placebo instead of the new drug. The study would add an additional 3 to 6 wks of treatments, if I decide to participate. I’m going to do some research on the drug & studies over the weekend and make my decision on Monday.

Whether I participate in the study or not will make the difference in whether my treatments start the end of next week or the first of the next. It will take an extra test (Echocardiagram) and some extra paperwork, so will add a day or two to the start time. But, 1.5 wks at tops for the first to begin.

They did a blood draw using my port today. And that was a learning experience! First, I don’t know why, but I didn’t expect it to hurt so much. But, the skin still isn’t completely healed and the port area does still hurt. I just kind of didn’t think about the fact that it is still a needle going into your skin, and it mostly surprised me.

She did have trouble getting it started at first. She had me turn my head to the left, then the right, then asked me to cough. To which I responded with an immediate “NO!” She looked at me, and I said “Will that hurt?” she told me no it wouldn’t and chuckled. So, I went ahead and coughed a couple times. Such a baby, aren’t I

Then I thought about it, and suggested that perhaps if I relaxed my arm that was currently clenched in a fist, it might help. Sure enough, the blood immediately started to flow out into the tube. Marcus said it was an instant effect! Hahahaha, I told her next time she has trouble, she should check to see if her patient has a relaxed arm or not! We all had a good laugh over it.

I’m still having pain throughout the incision areas and chest muscles and particularly the port area. But, it’s getting better. My sugar is still wacko and I just don’t understand the way my DR wants me to handle the insulin, so that makes it harder. I am working hard at watching what I eat, but somethings still jack it up more than I expect and it’s just very frustrating to have to be so careful what I eat. I want so badly to get it consistently down so that I can at least have a hope of getting off the insulin, but I’m afraid that is a lost hope until after the chemo at least, because that’s one thing the DR said today, that the meds for nausea will cause my sugar to go up, plus the chemo may affect my appetite which will cause difficulty too.

Also, I had an appt with my regular DR on Tuesday. We spent a good deal of time going over my meds, and did some changes and adjusted up or down on some of them. We discussed some other things for the future and it was a very good visit. He said my hernia where I had the second entry when they did my gall bladder removal was not bad enough to worry about until after the chemo and such is all done, even tho it does hurt me sometimes, I shouldn’t do anything with it at this point. He did increase one of my pain meds so that maybe my fibro pain will subside more. We will see how it does.

The insurance change finally went into effect yesterday. Right in the middle of the pharmacy filling some prescriptions! So, they wouldn’t go thru on the old plan, and I don’t have the new card for the new plan. Hopefully, it will get here in the mail tomorrow! Geesh, if it weren’t for bad luck somedays, I wouldn’t have any luck at all!!!

Anyway, I think that’s about the brunt of the news I have to share with you, and I’m starting to hurt from typing too much, so I guess I’ll close for now. (Oh, and if you happen to notice the time and wonder what I’m doing up so late… I slept all evening! It was a long afternoon, I guess hahahahaha) I hope each of you have a great weekend!

Blessings to all, goodnight.
Sherry

Good morning all. Well, first, I missed an important piece of information in the conversation with the DR yesterday.

Must be related to my sister, because she missed the same piece when she got her first infomation too. In addition to the 4 initial treatments, 2 wks apart each, there is a 2nd series. Once a week for 12 weeks Whether I participate in the clinical study or not. I thought the 2nd series was only if I did the study. Marcus re-explained it to me this morning. That’s what I took him along for, right?

Wow! That’s more than 4 months! I don’t think I wanna do this and NOW I want to quit! Where’d I get all that positive attitude from? I know, from ignorance!!! Yeah, and if the length of feeling crappy isn’t enough, read some of the “likely” side-effects and work up to the “rare” ones. And that’s not including the test drug!

The other thing, I thought I would share the name of the trial drug, which isn’t like a new drug, it’s been successful in different cancers and higher stages of breast cancer. They are just studying to see if it is a viable option for lesser stages. The drug is Bevacizumab (link goes to Medline Plus description of the drug).

Well, I think the next order of business should be for me to get out my Bible and start praying for a whole lot more things than I was before. Now, I need to be covered for side-effects. Geesh, all that crossed my mind before was hair loss, vomiting, fatigue, low immune system. Yeah, then they gave me the sheet of meds that make up the chemotherapy with the side-effects.

Ok, time to buck up and go find me something good to read! Sounds like Marcus might even be fixing up some breakfast. Gotta take my sugar quick. Someone eat some chocolate for me today, would you? Check out the weather, and whether it is good or not, give a smile to the sky, and float it on a cloud to me. I’ll send one right back, you know I will!

Blessings to all, and a happy Saturday to you!
Sherry

Today I’ll just give you the link a good friend of mine sent me after my update this AM. It plays music which is really enjoyable to just sit and listen to. And the letter is a really good reminder for life. I’m going to put it in my meditation book, the one that will have a copy of my map with all your cards dotted on it, and maybe in my next post. ! I hope you enjoy it as much as I did.

Special Message - http://www.frontiernet.net/~jimdandy/specials/blessed.htm

Here’s a little more clarification on my treatment plan. I still have 3 drugs of chemo. The study would add a fourth, not replace the regular chemo. I don’t have much choice about taking the 3 drugs. Those are pretty much a given, if I’m going to be sure it doesn’t come back. The fourth drug, while having a coupld side-effects that are not listed in the first 3, also carries the probability of improving my chances of the cancer NOT coming back. Also, the 4th drug is taken at the same time as one of the others so it doesn’t increase treatment time, unless I’m in the group given the opportunity to continue.

I will still have the 4 initial treatments spaced 2 wks apart, for the first 6 wks. Then begin a regime of 12 treatments with or without the trial drug of 1 treatment every 7 days for 12 weeks. So, I’m in for about 18 weeks, regardless. Then if I’m in the study, and am in the one group, then I would be given the opportunity to continue with the new drug 10 times 21 days apart (I believe it is in pill form) if I choose.

I think there are only a couple side-effects that are not listed on at least one of the other 3 drugs. One is a possibility of diabetic neuropathy developing in my hands or feet, but as soon as it is noticed, if we stop the drug, it is reversable. Also, this is mildly a side-effect if one of the chemo drugs, so, its likely to happen anyway, but not as severe.

As everybody knows, the chemo will decrease both my white & red blood cells, but with the trial drug, the decrease in white cels will possibly be 24% vs. the normal 16% without the extra drug.

Blood clots is an additional risk with the trial drug. It is more of a risk to those age 65+ where they’ve seen an increase from 2.9% with chemo alone to 8.5% in this age group with this trial drug.

Both, with or without the added drug, I risk getting Leukemia, damage to the esophogus & stomach lining, heart damage (I’m taking an echogram Wed for base monitoring) including higher or lower blood pressure, palpatations or irregular heartbeats, and some others.

With or without the trial drug, I stand a risk of internal bleeding, in both the stomach and the intestines, but the risk is higher with the trial drug. But, these were seen primarily in the use of the drug with patients that had colorectal cancers and were receiving higher doses. Also the higher risk of lung damage or bleeding was seen in the lung cancer patients, again using higher doses.

This is the first trial, I believe where it is being used in lighter doses on a lower level of cancer. It has proved itself in stage IV breast cancer increasing the length of time before progression continued, and increased remission rates. The same types of usage has been done with higher stages of lung and colorectal cancers. But, this is the first time it is being used on those that have a good chance of total remission without the drug already. The hope is that this will bring those with early stages of breast cancer into an even higher level of survival rate, without as many side-effects because of the lesser doses.

With all the other side-effects considered, and only the possibility of higher percentages of a couple of them (meaning I might/probably have those problems anyway, it will just be to a higher degree or a higher possibility with the trial drug) I guess I’m not as inclined to be anymore afraid of the additional drug as I would be if I was taking it alone. The standard chemo cocktail already contains enough side-effects to knock down healthy (other than the cancer), vigorous individuals, so what’s a little more?

I might get lucky and really be assured of never having the cancer come back (of course, I run that possible benefit even without the added drug). And I might get lucky and only serve as a counter-balance by receiving only the placebo medicine.

It can lengthen my treatment time, if I’m in the right group, and chose to continue, but I would also have the option of saying, I’ve tested the extra drug enough. I’m ready to quit, with no problems. So, the length of treatments doesn’t have to be increased at all.

Wednesday I will have a chance to ask the DR how much he considered my present and previous health factors before offering me this study, and obviously if he feels truly they pose no extra risk to me. I am obese, lead a sedentary lifestyle, diabetic, have Fibromyalgia, and have a disease called Sarcoidosis, which is an auto-immune disease already, but it seems to be under control again with a mild dose of Prednisone. Or if he just recommended the study with a cursor glance that I didn’t have any major serious things that might effect the study and based his decision primarily on the fact that my higher risk cancer makes me a candidate.

I think that’s about all I can share on this study at this point, and after talking to the DR on Wednesday, and find that he has no problems with my existing health being a problem, I will probably go ahead and participate. I’ve been back and forth on this probably a dozen times, but I think with the time I’ve sat and looked at what I’m already going to receive, risks, possibilities, side-effects, and the few increased or additionals, it doen’t matter much more than the difference between the Atlantic and the Pacific. They are both huge, and once you get that big, you are way past being a lake, so why worry now!???!

Please pray that I am making God’s choice and that this is what he feels is best for me. He’s kinda hard to read sometimes, so maybe if everybody asks, and the question is really loud, He will answer really loud!??!!

Blessings to all of you, and may you have a wonderful day! I’m going to get aspirated again, so I’ll feel better later hahahaha
–Sherry

Today Pam thought she would send an online flash Irish Blessing:

http://www.e-water.net/viewflash.php?flash=irishblessing_en
Thinking Good Thoughts for Your Recovery, Pam

Thank you, Pam. That one and all the others were very beautiful. I appreciate the link. Those are full of beautiful music, words, and pictures. I wish I owned more Irish/Celtic music. I have a lot of good listening music from Yanni and various other NewAge musicians, plus a lot of instrumentals & classicals. But, I’m lacking in the Irish/Celtic music area.

Sherry

Hi, Everybody!

Well, time to get my big girl hat and boots on and get ready for chemo. I start on Monday. I went this week to a training session, where they made sure I was aware of all the possible side-effects, and what to do about some of them. Things to watch out for and such.

They gave me a tour of the area. They showed me where the coffee pots are Very important when you have to go early in the AM (they also have several choices of tea for Marcus) plus there are snacks and some of those little packets of water flavorings. And they have portable CD players with quite a stack of CDs. I have some music already selected for myself, but now I won’t have to drag along a player. That’s helpful.

I have to go in early to get my blood tested, to make sure my hemoglobin is high enough to withstand the chemo, then I get a shot that’s supposed to help with the nausea (let’s keep our fingers crossed on that one too!), then a short visit with the DR and then on to the Infusion room for the next 2-4 hours.

I go back the next day for a shot that will help my system rebuild by white blood cells, and if my red cell count gets too low, then I have to go on a special diet. I’ve heard that red meat is not tolerated well by the digestive system during chemo, so I’m having steak for dinner tomorrow!! And then I’ll probably leave it alone for the next several months. No sense aggravating an already rough situation with a known agitant.

I don’t think I’ve updated since I made my definite decision to take part in the clinical trial. I weighed all the possible side-effects that were already listed with the drugs I’ll already be taking, and there are only a couple extras. And while it could increase the risks of some of the duplicated side-effects, I really think it is a good choice. With my history, I know that I’m probably in a higher risk for having the cancer return, even tho they have really cut those total odds tremendously, it still is a possibility. So I really feel I have to do the extra step to ensure I’ve done all I can to safeguard against it.

I was going to have a genetic study done to see if I definitely carry the gene mutation identified for breast cancer, which would give a heads up for all the other females in my family, but unfortunately, with the state insurance I have, they don’t pay for out of state costs. Although they did offer me a “5 easy payment plan” several times while I continued to tell her I couldn’t possibly afford the $3800+ test! Some people just don’t listen well hahahaha

The dietician and the diabetic counselor really helped me a lot with my insulin and diet. I think I need a little more tweaking and help, but they are both very knowledgeable and willing to help me get things under control.

I really hate doing this stuff. It feels like I do nothing but focus my life around my sugar and the cancer. I’ve spent so many days and hours in meetings, conferences, reading papers given to me, finding more info online. Only to then spend the remaining time testing my sugar, giving insulin, eating, testing sugar again, resting/reading/listening, testing sugar again, eating, taking insulin, testing sugar, and taking more insulin!!! Geesh, and beginning next week, I add some more injections and time at the hospital! Anybody want to volunteer just to keep track of my schedule for me?

I started lymphedema therapy last week, and will meet with her to make sure I’m doing enough and proper exercises to keep ahead of that (oh, yeah, I forgot to add in my schedule above, that I try to walk a little every day, and do a session of stretching exercises so that I can keep the lymphedema down, and the body waking up! Whoever takes over my date book, needs to remind me to do those every day too! So, don’t think you are signing up for an easy job if you want to be my schedule keeper! Poor Marcus has his hands full, constantly reminding me of things. That reminds me, he slept thru supper, I just had some salmon salad. Yummy. But, that means even tho I remembered to test my sugar BEFORE supper, I didn’t test after, AND I didn’t take my meds!!! Geesh, I think I lost my brain somewhere, anybody find a stray one???

I have to tell you a good funny situation before I go. We decided that since after next week I may not feel like or care to eat many things, I should enjoy some special dinners this weekend, so we went out to a Chinese restaurant the other night, and to Olive Garden for lunch today. I’m not sure what the waitress said but Eric was encouraging me to eat what I wanted and not be concerned with cost or diet. Today was to be a special meal for me, and the waitress said, “Oh, what did you do to deserve a special day?” Well, I looked at each of the others, and we just couldn’t help but start giggling. Which of course puzzled her.

I told her before explaining, that she should not feel bad, because we love to get a laugh in anywhere we can, and then told her what I did to deserve the day was got cancer. We really did rush and pour out to her to not feel bad, tho you know she was very sorry, but I told her that I really did appreciate the humor in it, and that it was just too ironic to pass up. She said as long as it brings a smile to my face, she was glad to have made the blunder. I told her I was going to put it into my inspiration book, that I’ve found another silver lining to getting cancer. “I’m eating really good this weekend if nothing else!!!” hahahahaha

So, anytime any of you start feeling sorry for me, remember–before, during, and I’m sure for a while afterwards, I will get little and great perks here and there that will fill in those little gaps that make this a rough road to hoe!

Keep smiling with me, and even try to find something funny or inspirational for me to think about. I’ll add it to my book that I will be taking to my chemo treatments and reading during the week when I just don’t feel like reading anything else.

Well, I’m off to bed. I took a nap too late in the day, so am just now getting tired. And don’t worry, I’ll take my meds first

Blessings to all, and have a super weekend!

Sherry

From Marcus:

Sherrys Chemo went well today. It took a lot longer then expected. She wanted to update for herself, but was very tired afterward. She took a nap soon after we got home. woke up to eat and talk to our kids. then another nap while trying to do a few things at her ‘puter. finally went to bed. We will see what tomorrow brings as she has 2 more appointments at the hospital.

Thanks to all for your continued support, Marcus

Hi, Everyone!

Many thanks to my husband for giving you an update, he’s so thoughtful and helpful. And a great date book!! What would I do without him!

Anyway, I did get a nice full update done this am, but it was time to go by the time I got it finished, and had no time left to even post it. So, here’s this mornings up date onhow things are going for now….

Well, I’m sure you are all anxious to know how yesterday went and how I’m doing today. Yesterday went really, really well! And today I’m slightly nauseous but not too bad. We’ll see how them meds do when they kick in.

I put the numbing med on like it was supposed to be done for my port, and never even felt the stick. That was SO great!!! No pressure nothing. I was really glad for that! If you ever have to have a port or know of someone that does, be sure to tell them to ask for the lidacaine ointment and proper instructions on using it! Makes the world of difference! Oh, my you wouldn’t believe!

Anyway, the chemo, went really well. With all the other things that go along with it, you are there for nearly 6 hours. But they feed you a nice lunch, so that’s a bonus There’s also lots of snacks, pretzels and other things, along with coffee, tea, water flavorings, and sodas. Really nice selections. So that’s good too.

First you have a blood draw to make sure your blood levels are high enough. My hemoglobin is a bit low, and I’ll probably have to have a consultation with the DR next week or so on bringing that up. I’ve always had a problem with it being low. And once the chemo starts attacking it, I will go below safe levels pretty fast. I eat lots of protein, meat & green veggies, so may need to either go on a med enhancer or just find something stronger to eat that boosts red blood cells more intensely.

Then you go talk to the Physicians assistant and DR if needed, she checks your blood and discusses any other test results you’ve had. I didn’t see him this week, I think he’s out on vacation. But, if not before, I’m sure we will talk about my blood count next week.

We go back to the infusion lab, where they hook up the saline drip, and a couple bags of one chemical concoction. A little later they bring another to infuse directly into the line with huge syringes. They want it in faster, for whatever reason Then they change to a third chemical concoction. I could tell you all about what’s in them, but that’s boring, just know it suff that will burn the crap out of your skin if it gets on you, so think what it might be doing to my veins and my organs as it gets processed. And we wonder why we get sick from the stuff! Hahahaha

During my infusions, I spent time with the Mind & Body gal who taught us (Marcus too) a little about using music and deep relaxation for pain, insomnia, anxiety, etc. I listen to a lot of soothing, easy listening music, but no one has ever really talked about the physical techniques of preparing your body to be more receptive to the music and flow along with the relaxation. It was really nice, and since I didn’t sleep all night Sunday (just a thing of mine, even when going on a trip, I never sleep the night before, I’m always still getting ready I actually did fall asleep, but not before I really fell the heaviness and soothingness effecting my body as I thought about it and tried to go to a warm loving peaceful place in my mind.

She asked if we got to a good place, and I told her it was kind of weird, I know I was someplace else, and it was full of colors, peaceful and beautiful, but that’s as much a I could describe of where it was. Maybe it wasn’t a place, just a state, or just some beautiful peace that God gave me, because it was certainly nothing on this earth. I do know there was water, but not sure if it was a beach or stream or something else. Interesting. Maybe I was just hallucinating! Hahahahah great hallucination if it was I’ll take it anytime!

Then I talked a bit with the nutritionist about my hemoglobin, then the clinical trials nurse about the study. Had some lunch, and read a bit. Then a gal came in and was looking thru the hats and scarves they had in a basket there on the desk. I decided to join her and talk to her, since no one had mentioned them to me before. They are all really nicely made, and I was so pleased with the choices! The turbans were mostly too small for me, but they were really nice, with some beadwork on the little roll piece in the middle of the front. I did find one that fits, but no beadwork. But it’s not like that is a problem. I used to make jewelry, and still have a couple thousand dollars worth of beads and supplies upstairs! I’ve got some beautiful amethyst stones that if I can find some smaller ones, they will look great! It’s a very lovely lavender. Plus I got a couple different varieties and colors of tie around ones. They are really nice too. I had been given some hats already, and unless I just don’t know how to wear them, they really didn’t impress me at all, and I was quite depressed about them. The one nurse said they worked with the group that makes their scarves & hats before they got their’s looking so good and now everybody loves them!

I called my kids last night to tell them how it went after supper, but I was trying so hard to fall asleep, they kept asking me what I’d just said? And I had to tell them I didn’t know, I had no clue! Hahahah then they’d tell me I was starting to slur again, and I’d perk up a bit for a little more. Finally, each of them said they had enough and I should just go to sleep! Hahahaha and I did fairly early last night, but not before I had a little treat of a tiny container of ice cream from my Dad. Being from him made it extra special.

He doesn’t know what I’m going thru, he has dementia and we all felt it better if my sister and I were just “sick” not telling him any more than that. This weekend is the first I’ve seen him in over a year because I was the one that put him in the nursing home in the first place, and he was really mad at me for it. It didn’t help that two of my sisters told him a bunch of lies and no one else would say it was because the doctor insisted, just that Sherry was the only one that could get him out, and they didn’t know why he was there! No balls, tell him he’s sick and the DR said he has to stay people! But, no, they’d rather let me be the bad guy, so he was mad at me for a long time, and I just didn’t wan to risk upsetting him, because I also knew how much it would upset me. But with no idea what this chemo might do to me, I just knew I had to go out to see him.

It was a good visit, and then the next day, he and his girlfriend stopped by and he stayed for a long time, and he asked if I would come out once a week and bring him to my house to stay for a few hours. Neither of the other girls that are close come out to see him, and all his siblings have either stopped or slowed way down. I’m going to spend some time seeing if I can’t get him involved in some of the activities out there. He doesn’t do anything except sit in his room.

Well, the meds seem to be calming my stomach down, they said I should wait at least 45 min after taking them before eating. So, I’ll go give it a try and see if it is successful! I have some appts today and tomorrow, but not too long ones, and then resting for the rest of each day and all day Thurs & Friday

Seems like all the prayers that have been pouring in for me are really keeping me on the good side of the treatments. And I thank you all for thinking of me and writing me periodically. It’s really funny how there must be a spiritual influence on how many letters or PMs I get a day. Just enough to keep my spirits up, but not so many that I’m over whelmed. So, if you’ve wanted to drop me a line, and haven’t because you thought I was getting to many, please take a minute and do so. I love hearing back from you all, even if it’s just a short note. If the spirit nudges you, listen, you might just have the words I need today, to make it thru.

May each of you have a splendid day, and feel as well for your circumstances as I do. We each have our own burdens to carry, and while not everyone shares them, I know you have them. For every person that I talked to or hear from, I say a return prayer, that God is blessing you in the manner that He has been taking care of me, and that you are open to His arms a gifts to your life. Even if we don’t recognize them as gifts, if the come from God, they come with a purpose and reason in the great tapestry of life. Find the meaning for everything that happens in your life. He lets nothing come to us or thru us without there being a related event directly or indirectly affected by that event. Look around you and see who you can help with your experiences or troubles or knowledge. Give a smile, and inspiration, or even just a hello. You might just make the brightest spot in their day, and all the difference in the world to them.

God Bless and keep each of you, and know that I appreciate the friendship and sharing from each one of you. If you find something funny, inspirational, or just good reading, or the internet or somewhere else, please feel free to send it to me. I’d love to have it. I’d like my meditation book to be full. The nurses enjoyed looking at what I have so far, and thought my map was the most awesome thing they’s ever seen anyone do! Thank you each for being part of my life at this time.

Love and hugs to all, Sherry!!

Oh, and if you have something that emails send it to sherry@nislycreations.com If it’s needs snail mail send it to

SHERRY L. NISLY
318 S 10TH ST
GOSHEN IN 46528-3514