Relay for Life

Some of our Relayers. 

I am a life long Jazzerciser, starting in 1979 and even Jazzercised overseas. Our group participated in a Relay for Life and raised an amazing $4000 plus! I just wanted to remember. It was a fun event. Hubby got a luminary for me and I took a picture of one of our friends luminary who went through lymphoma treatment shortly after I did my leukemia treatment. We are both in remission! 

We had a LOT of luminary out there. Hubby's parents, my dad and many friends and relatives that have fought the fight.  Someday I hope to not learn of any new folks who need prayed for. Don't like cancer, what it to go away. Why I did the Relay. I personally only managed 14 laps that evening, it had been a long day. Would have LOVED to have walked for the whole event. 

A reflection on January

Not a lot of sewing got done this month, at least not what I had in mind. Instead these things happened. 

Joined Weight Watchers and attended weekly. I am very close to my goal.
Started back to Jazzercise and did 25 classes in January! Plus got back to my Class Manager job. 
Made a LOT of Hug-A-Bear faces (my other face maker has retired)
Shopped for Hug-A-Bear fabric and made up packets for the sewers. 
Attended the lovely CASA gala and DANCED!
Hosted my precious son for 24 hours.
Cleaned out my closet of clothing that doesn't fit, went through a "figure change" due to age or chemo.
Attended meetings, lunches, studies, yoga.
Hosted a New Year's Day brunch and a Men's Breakfast in our home. 
Dealt with TWO, yes TWO computer crashes, it did it again folks! 
Had a doctor appointment, attended a birthday party, and made about 8 dozen cookies that got shipped off to at least 8 different places, and I still have three more boxes to fill and ship before Valentine's Day. 

It's been a full fun month, but sewing was NOT the highlight of January, it seems people were! Plus (and this is the best part) I am feeling FABULOUS!  I have recovered from my adventures with cancer and finally purged all that nasty stuff they put in me to make me well. Which is probably why all this fun stuff happened in January, and sewing took a back seat. 

Update

I am IN remission for REAL. No more tests, no more chemicals, I can even stop taking my antibiotic. It's good to be well. Thank you Lord. May there be NO MORE need to mention the C word in my blog ever again.

Not much sewing but a whole lot of fun

No sewing lately, there just hasn't been the time. We have had more fun than I have had in a long time and seen lots of family and old friends this summer. Many more trips and celebrations than we ever dreamed of, such a contrast after the seven months or so of very little due to treatments and recovery, although I did put on my mask and enjoy some activities with hubby. I am definitely on my game again, and NOT done with the fun. There are still baseball games, trips and family fun in my immediate future. The sewing will have to wait at least a while longer.

One thing that has taken some extra unexpected time is my doctor. My bone marrow results were good, but "to be sure" my doctor wanted a CT scan along with a couple of other tests. The CT scan results showed a "bulky spleen" so more tests were scheduled. Of coarse each step takes a week or two to schedule and another week or two to get the results, so in about a week I will find the results of a PET Scan and a spleen biopsy from last week. Hopefully nothing will indicate a need for more treatment.

This summer has been a blessing in so many ways and I have gotten to spend more time with family than is typically possible, especially my son and his family who live over a 1000 miles away. I have enjoyed it immensely. As much as I love my sewing, my family beats that time hands down. The sewing will be there and I might even enjoy it MORE after a two month break. If that is possible.

Some very "old" friends from the 70's came for a dinner party, SO fun.

One of hubby's magnificent dinner ingredients. AWESOMENESS!!!!!!

This tree was out in the hill country where we spent some time with hubby's sister and husband. One of several unexpected summer trips.

Oh, by the way . . .

Looks like I am finally recovering from all that nasty chemo. We'll know more in a couple of weeks, as I had a bone marrow aspiration and biopsy (just LOVE those things) this past week. My counts are beginning to head back to a more normal range. Certainly feeling better and going "like a house a-fire", as my mom used to say. Well, maybe not quiet that fast, but we sure do have a LOT of fun stuff on the calendar! Dinner parties four weekends in a row, baseball series, wine country, beaches, lunches, movies, the fun goes on and on.

REEEEEEEmission!

I had my doctor appointment yesterday and was very eager to get some answers. His comment about MDS six weeks ago really threw me and I have spent some time these past six weeks doing some research to understand the disease and praying I didn't have it. Two prayers were answered, first I do NOT have MDS, no indications of it in the bone marrow, and second (best of all), remission! I was a little surprised as I did not complete all six rounds of chemo. I only had three. My white count, neutrophiles and platelets are still extremely low, but I am on antibiotics and antivirals and will continue to be sensible about germs. Better safe than sorry, I say.

So we celebrated with our youngest (the bride to be) at REEF for dinner and even got a hug from the oldest on the way home. My family is so great at helping me keep things in perspective and giving me a good laugh when I need it. I was on the phone with my mom telling her about only having the three rounds and was concerned about that being enough, etc. and my daughter commented, "it's the chemo LIMIT, not the chemo REQUIREMENT!" I used to say something like that to her when she was learning to drive. It's the speed LIMIT, NOT the speed requirement. I guess she was listening. Sure made me laugh. Remission is remission, I guess I just responded quickly, good for me.

Now . . . it can be all about the wedding and the visit from the grandchildren. Pictures and stories coming soon!

Adventure #5 - MDS?

Yup, time to update on the health front.

I had my last chemo back over the New Year, nearly 20 weeks ago. For the past 20 weeks, my blood counts have stayed dangerously low, in the critically deficient range. I have been feeling a bit better, but fear of germs and my energy level keep my activities somewhat tempered. As you can see from the past posts, life is still full of fun, adventure and surprises! I miss getting to travel though, as there are some people FAR AWAY that I love VERY MUCH. I will be risking it this summer though, getting on a plane, augh, scary, GERMS! Babies . . . hugs, laughter and play!!

Anyhoo . . . this business with the marrow not recovering prompted my doctor to consider the reasons why and suggested that we need to look into something called Myelodysplastic Syndrome, or MDS. It is basically a failure of the bone marrow. Another type of cancer. I knew going into this that once you had one cancer, your chances of getting another were increased. This one, in fact, is often brought on by chemotherapy, which is a very toxic process. I sure hope it is not MDS, but in reading literature from the MDS website and the MDAnderson website, it is possible. Regardless, something is wrong and probably needs to be addressed.

I have spent the past few days with weepy eyes and great peace as well. No matter what, all will be well, it is promised. I hang onto that and the fact that I have an incredible husband (give that man a gold star) family and friend support and probably more people than I can imagine praying for me, and I have my faith, which I am so thankful for. I must rest in that and keep a positive attitude.

My doctor is giving me some time to see if I might still spontaneously recover my counts, hope springs eternal! Thank you for the prayers, they mean so much to me and each day I sit quietly in a special spot with an icon of Jesus calming the waters in my line of vision and I take in all those prayers, consciously, purposefully and thankfully.

Snapped out of it

I seem to have finally recovered from the silly shot reaction. I am actually planning on sewing today. I did spend a few hours in the sewing room last week. I hope to finish up a very late birthday gift for a young man that is dating (seriously dating) my daughter. Maybe it will be finished today.

I also have a couple of new foster kids in town and with Easter coming, I am having yearnings. I love little girl Easter dresses, they are extra special. We'll see.

Fever

Since starting treatment I ran my first fever yesterday. I was not having a good day, so totally tired, but when I started feeling feverish, I got concerned. Just rested and took my temperature throughout the day. It never got to 100 and today is gone. Not sure what that was about, but sure don't want that complication. I must head straight to the nearest emergency room if it hits 101. Not good.

I got my cancer care book out to read some of the suggestions and will now wear my mask when I am outside, even picking up the mail. I also wear them when I do hubby's laundry from lawn work. Neurtopenic patients (me!) must be extra careful. The fever shook me up.

I did get a giggle when I read the chapter on Fatigue. Did you know there are WARNING signs to fatigue? Did you know if you feel weak over your entire body, have difficulty concentrating, lack motivation to be physically active and do not get relief from fatigue by resting, you might be fatigued? DUH. Gotta good laugh from that.

What I have learned

I have learned two things through my treatment.

1. I CAN go to events like ballet and such, my doctor has not restricted these types of activies. I wear my mask and people seem to respect that and give me a wide berth. Since I don't know anyone I can get there early, settle in and sit quietly.

2. I CAN'T go to (or pay a high price for) functions that require me to converse. Conversation completely wears me out. Hubby is used to it, I just don't have much to say. My friends can absolutly tell how I am doing when they call just by the way I am talking. One would not think talking is effort, it is.

That is what I have learned.

The shot I got does not seem to have caused as much problems as last time. I was sore yesterday, but today, only two days later, I am more comfortable, and the sore throat (from being out talking) has also eased up.

So I continue to take it easy, rejoice that the chemo is working and look forward to the day that I can work out, go on trips (short and long) to see family and spend more time out and about with my buddies. Also, I sure have missed sewing. I do a bit, but not near the volume I am used to.

Delay of Round 4

Today my tests showed two important things. One, my counts were still as low as ever, so chemo is delayed. I got a shot to boost my numbers. Two, my bone marrow biopsy showed no signs of cancer! BUT, I still need to continue chemo. "Mopping up" as hubby puts it.

Round 4

I just noticed it has been over a month since my last posting. Hmmmm, no sewing (well a little) but lots of praying.

I have done a few little projects, a Texas shirt requested by a church buddy and sewn for a church auction, as well as another bag, similar to the one I gave my daughter-in-law for Christmas, also for the church auction. I took my time on them. I also finished some pillow case dresses my daughter-in-law requested for her girls. My suit and some other projects will sit and wait until I am up to working on them.

I start round four tomorrow as long as I am recovered enough from round three. It has been eight weeks this time. Six weeks the time before (with a shot to help), four weeks the time before. Not a good trend as I see it. Each time I am knocked further down and take longer to recover. I had my bone marrow aspiration/biopsy two weeks ago so will be restaged apparently tomorrow. There is a chance I may not need all six rounds of chemo. As much as I would like to stop NOW I want this out of me as much as possible, so I'll do what it takes. Report coming soon.

After the first two weeks, which are not pleasant, my biggest challenge is tiredness. My "exercise" is taking care of the house. I have had a bit more energy the past couple of weeks, which makes me feel very hopeful that when this is all over I will indeed return to normal. Realizing it will be a new normal, as I am older and have been through a serious ordeal. I look forward to building my strength and stamina. I hate being puny. Five years ago I was a fine specimen of fitness! I will be again.

Where's my banana?

Chemo . . . does funny things to the brain, let alone the rest of a body.

Yesterday I ate one banana and planned on eating a second one, as they were ripe, maybe a bit OVER ripe (remember this part) and after the first one, I lost track of the second banana. Roaming is a big part of my day the week after chemo. Just roaming, shuffling, peering out of the windows, senseless mind wandering as well. I remember thinking about the banana a few times during the day, but not with enough passion to stick with the thought, just a fleeting question in my head . . . "where's my banana"?

So, last night, hubby gets up from his "spot" on the couch to head for bed. Our living room is dim at night, some ambient light and the TV and under his bum was a very strange sight. It was sort of light and dark and blurry looking. At first I thought he must have sat on a bird and killed it. Don't ask me, it made sense at the time. Then he reached for it and pulled back with a "eewww". I bravely reached down and it quickly occurred to me . . . THERE's my banana! The poor thing had sat in a warm squishy place for at least an hour and neither of us had noticed. And remember the OVER ripe part. yeah baby, it was! Chemo brain.

My worst "c.b. incident" (thus far??? yikes!!) was when I followed hubby in from a venture out of the house (rare for me these days) and I left the garage door open and barely shut the door from the garage to the house. Hubby set the alarm when we went to bed and in the middle of the night we were woken to the alarm! The wind had blown the door open. We shut it, reset the alarm and went back to bed. In the morning he discovered that that garage door had also been up all night, not noticing when the back door blew open. I hope he learned his lesson!

Post chemo reactions

SOOOO tired, all sleep overwhelmed with bad dreams, nausea staying low key, but there even with meds. Five days since I started third round (three days) and hoping to snap out of this . . . really quick. Yuck.

Had been working on a green corduroy jacket before starting. Might be done in a week or so. We'll see.

Chemo round three

I went in yesterday to begin round three. I was in a complete sour mood, my "highly sensitive person" was rearing her ugly head, all was bothering me and I wanted to run away. NOT a good way to start a round of chemo, and in fact was offered to wait until Saturday. NO . . . NOW! I had already had a two week delay due to counts too low to subject me to any more chemicals. The shot I had worked and my white count and neutrophils were where they should be and it was safe to start round 3.

I had a reaction to R both previous times but this time, as they cranked it up, I just laid there with my meditation music going, relaxing despite the folks behind the next curtain listening to some show about DNA tests to find out if they were the dads as claimed by these women. Good grief, hang out your dirty laundry, eh?

Anyhoooo, I had not only gotten in early, I also finished in record time. When they shut things down due to reactions, they shut them down for an hour, then start all over. The other benefit of no reaction is no extra meds. I find those to also have side effects that are unpleasant, even though they take care of apparently worse side effects. All a crazy mess.

My doctor has decided to move me to a six week cycle since four weeks seems to not give me enough time to recover. Don't like it as it puts the sixth round into May and I was hoping to finish in early March. MAYBE I won't need all six rounds. MAYBE.

I will also need a bone marrow aspiration/biopsy before the next round to re-stage. Hope for super good news on that account.

That's the update!

My shot!

Chemo was delayed this week, as white counts were way too low, as were platelets. Ah well, what can you do? Get a SHOT! Then twenty four hours later feel every bone in your body! Something is perking in there and I felt like I really over did in the weight room the day before, but a deeper soarness. Kept me up the second night, but slept fine last, yeah! If they threaten me with it again, I will get it, and maybe in my belly, which is where she wanted to give it to me this time. Just couldn't do it this time. In the arm it went, nice and s l o w ! Ouch!

So revisit chemo round at the end of the month. Hopefully this $5000 shot did it's job.

Chemo is complex!

Here I am getting started on round two. There are 13 bags on the towers to start, they added two more during treatment due to some complications!

I finished up yesterday and am feeling much better now than I was the day after the first round. Partly due to some different nausea meds and maybe knowing a bit of what to expect. Must admit there was some anxiety heading into that first round, even with all the meditation and calm I was surrounding myself with.

The first day we got to the hospital around 7 a.m. for labs, then to see my lovely doctor, who remembers us from my youngest!! She was with me for "the visit" when the decision was made to start treatment. This is one of the things he remembers about her and always laughs about them. Her toe shoes.




After all the labs and doctor visits and such, we got started around 11:30 with all the premeds, then on to the real stuff. The "R" that I get takes six hours to give as they start with a small dose and increase slowly to avoid side effects. The last time I reacted quite soon and all was shut down with meds given, then an hour later started up again. This time I went quite a bit longer before I reacted and the reaction was hives, mostly on the inside, except for my face, which was scary looking! But again, stopped the "R", gave the meds and an hour later started up again.

Because this was my second round and I "tolerated" all the meds the first round, we saved a day by doing the other two meds, "F" and "C" right after finishing up the "R". Those take about two hours because I have to have saline between as the drugs don't mix well! Frightening in a way, eh?

So we finished around 10:30 the first night, headed for our cozy loft in town and were back the next morning for part 2 of round 2 and the next morning for part 3. All without incident. I was extremely glad that my vein held up for three days, as the last time it was fine day three, but day four had to be redone. Getting stuck so many times kinda gets old, with labs and all. So I was very thankful for that little gift. It is such a relief when it is removed. Hard to sleep with the covering and movement making it pull.

I am sequestered again as especially my platelets are in a critically low range. I need to make a big chart to follow all the blood components they are keeping track of . . . maybe later. A bit tired, a bit nauseas, happy to have my "little one" here juicing and making smoothies for me and just being a little sunshine in my life. Nice of her to take her weekend to "babysit" me a bit. Hubby of coarse is my rock and patient caregiver. There he sits for HOURS watching as heaven knows what will happen to me next.

I am so thankful for

Prayers, as I am feeling them each and every day.
Family who continue to encourage and love me.
Friends who check in just to see how I am doing.
Cards that come in the mail. I should take a picture of them all lined up.
Doctors and meds
Soothing music.
God's love and mercy.
Healthy food and the desire to make it a priority.
My computer.
Smiling faces on pictures of my grandkids all around the house.
Indian summer and sunshine.
Life.

Interlude - noun - period in between

A few years ago, I got a diagnosis of cancer! Stopped me in my tracks . . . for a while. Then I learned there are MANY types of cancer and I had one that was "chronic"!! I had never heard of a chronic cancer, but I had it. I was able to live my life without much interruption, seeing my grandbabies, sewing, praying and enjoying life puctuated with trips to the doctor as we watched and waited, an actual term used in cancer circles.

Alas, my chronic cancer finally had enough impact on me to warrent the beginning of treatment, which I began Oct. 21, 2010. This is me just before they began infusing my six hours of Retuxin. The little elephant was given to me by my youngest after a previous surgery. He just makes me smile. He is wearing a surgical cap, a frequent fashion accessory for bald cancer patients and freely passed out by volunteers at the cancer center. I won't know if I will lose my hair for a while yet, it takes one to three weeks for that surprise to be revealed. The coconut juice is a healthier option than gatorade, which is encouraged to avoid dehydration. It worked! Thanks Dewey. The afgan is from my oldest's church's prayer ministry. Looks like I am ready to go!

I had to go back a total of four days for my chemo cocktail. Mine is called RFC. Yummy! Then 28 days later I do it again. Six times, then I will be well again. Complete remission, that's the plan.

This is my in my new look. I have permission to go out, but need to wear this mask and not hug and kiss! Hmmm, I think I can do that.

A selection of my medications. Three of these are for nausea and it STILL didn't work. Next time we'll try number FOUR!

And here are five reasons that I can do this. This is from our recent visit.

I have many more reasons to get well and keep my chin up during the rough bits. I have the most wonderful family. The love of my family is better than any medicine on this planet.

I also have a book,

CRAZY SEXY CANCER TIPS

by Kris Carr and these are a few of my favorites from her book.

Tip # 21. It takes a village, so create your tribe and delegate!
Tip # 41. Journaling is self-therapy on the cheap.
Tip # 42. Take a cancercation. (I LOVE that word, Kris is brilliant!)
Tip # 43. Take some time to quiet your mind. (vital for me as I take in prayers)
Tip # 53. Oxygen and a healthy pH balance are cancer's worst enemies*.

* my youngest has done extensive research and I begin every morning with kale, bok choy, beet tops, spinach, chard and romaine. Right through the juicer, down the gullet and off to fight the foes in my innards. I'll take all the help I can get.