I haven’t blogged in so long, been too busy. I’m just tired of being sick. Probably have bronchitis, not sure yet. Gleevec is still doing its job as far as I know. Hopefully I’ll feel better soon, have so much to do, with school and work. This post is really short, but just wanted to let you all know I’m still here…
It’s been about two months since I’ve posted. I have been so busy with work and with life in general. I had my follow-up appointment in August and my labs are looking good; the numbers are up but not in a bad way yet. Still have to do everything I’m supposed to do, with proper handwashing, etc, so I don’t get sick or go back out of remission. Some people give me a look when I tell them I still don’t want to shake their hands, because I don’t want to catch anything. Call me a germaphobe, I don’t care. Just because somebody is in remission of Leukemia, or CML, does not mean they don’t have the disease. It just means that they have good lab results. There is no cure for CML; only treatment, for which I am thankful to God for. I still feel a little tired here and there, and I’m trying not to get sick since a couple family members are sick now with bronchitis. Break out the masks! It seems to happen every year with the family.
On September 22nd, International CML Day, I was able to set up a little table at work with a poster board, showing the different types of blood cancers, but I was focusing mainly on CML, mostly because I have it. Many people did not know that September is Blood Cancer Awareness month. I just wanted to do something to show awareness, and probably will do it next year too.
I checked into classes just to see if anything was being offered at the college nearby, for my interpreting major, but they don’t have anything until next fall. I’m not really worried about it, I can catch up on a lot of things between now and then. I haven’t been able to go to the Silent Dinners lately, mostly because I am so exhausted at the end of the day on Fridays. We had a really good time early September with the Deaf missionaries from Atlanta, Georgia, Bruce and Vicky Kelly. Soon we will be having Fantastic Saturday at our church with Jon and Diane Barr from Silent Word Ministries.
The Yorktown Calligraphy Guild that I started in December of 2015 is really taking off. I have 83 members so far. I hope to begin a class on Modified Old English very soon; I’m just waiting for people to respond. So far no one has shown interest yet except a couple of people. I received my package in the mail, I ordered a glass pen. I only bought the cheaper one, and I might the more expensive one later on, we will see. That’s it for now…thank you very much reading my post.
I haven’t been here in a while mostly, because life has been really super busy. I finished the spring semester at school, but due to low enrollment, the classes that I need are no longer available. Which means that I will not be going to school, but I’m okay with that for now. I will continue to surround myself with my Deaf friends and practice my ASL.
The Yorktown Calligraphy Guild that I started in December has really been taking off. I now have 82 members which of course includes me and my husband as two of the members. I have taught three sessions worth of classes so far. I am planning to teach at a local arts center in September. I have been doing more calligraphy and I have tried to sell items without any luck so far. I’ll have a table at a craft fair next month so we will see how that goes. I am by no means, a professional calligrapher, but the things that I make are from my heart.
Some great news… as of May 5th I am in remission! I still have to take all of the medications daily and do everything I can to keep from getting sick. I don’t have any new side effects from the Gleevec to report I was thinking about doing some kind of awareness for CML at my job in September, but that is just an idea. I want to do it on September 22nd, the International Leukemia Day, but we’ll see…
I have more energy than I have had in the past and am still working. I do have a few bad days but my co-workers understand and I have a lot of encouragement from my family, church, and friends. I will try to be more consistent with this blog because I know there are others that are in the same situation as I am and want to be an encouragement to others. Thank you for taking the time to read my blog. If you are interested in the Yorktown Calligraphy Guild, you can find me on Facebook.
Yesterday was beautiful but today it’s cloudy and a little chilly. Gloomy days always make me feel more tired, but I didn’t have any time to feel tired. I woke up early and did some grocery shopping, ate lunch, and then realized it was already almost time to leave for my first calligraphy class. I tried to take a short cat-nap, however, between dogs, kids, and computer printer questions, I was only able to get a good 10 minutes of “hard sleep”. That little nap really helped me, actually.
We arrived at the library and set-up for the class. I had a syllabus planned out, however, I was having trouble finding things to add, since it seemed that I went through, what I thought was a lesson plan, so quickly. I felt very nervous and next time I will try to get there earlier. I think it went rather well and it seems like people were excited. Next week we will go on to Lesson 2, and I think we will try fountain pens. It would be cheaper to do dipping ink and quill, however, I don’t think everybody’s ready just yet. We will see. I want to do an embossing demonstration, with italics also. By the way, we have 60 members of the Yorktown Calligraphy Guild. Actually two of those members are me and my husband, but that’s okay. It is neat to see the membership grow. I think later on we will have a once-a-month meeting to discuss events, have demonstrations, and have sort of a show-and-tell with our work.
I did not go to work on Friday because one of the kids was sick. I definitely used my day-off wisely. I was able to do laundry, do a little ironing, clean up the kitchen, and hallway. It was so nice outside yesterday that I opened the windows and aired out the house. I go to my oncologist next week to see how my numbers are doing. I still get very tired at times. I have increased the time between my Gleevec and my Maxide, and this seems to help with my edema in my legs. I don’t know if anybody has the same problem with Gleevec as I do, but it seems to help when I elevate my legs at night for at least an hour.
We did go to the IHOP thing on Tuesday, barely. When we got there, they were about to stop the “free pancakes” promotion, but luckily we were able to get in. Our server was so exhausted that he did not charge us for our drinks. This coming week should be a normal week; I really don’t have anything planned except for the second class on Saturday. I really need to catch up on my housework, but I will take it one day at a time. God has really been good to me.
It is been a few weeks since I’ve posted. I have been very tired, especially in the morning, even after my normal cup of coffee. I worked a lot last week, so Saturday I didn’t feel like doing much. I did have a dramatic increase of membership in my calligraphy guild due to the fact that my husband shared my Facebook link. I’ve been wanting to teach Calligraphy for many years but did not have the means or place of having any classes. However, this weekend changed everything, and now I have my first class this coming Saturday at a local library. I’m very nervous but excited.
Tomorrow is National Pancake Day at IHOP and some of the local IHOPs are supporting the LLS which is the Leukemia Lymphoma Society. Everyone can get a free stack of pancakes without obligation, however, donations are highly encouraged. It starts at 7 a.m. and runs until 7 p.m. so we might just eat pancakes for dinner! Anyway I encourage you to donate if you would like to, and plus you get some great pancakes.
There are no new side effects to report with the Gleevec, which is a good thing. Well, I have noticed something: when I take my Gleevec too close to the time that I take my Maxide, it seems to cancel out the Maxide. Edema is one of the side effects of the Gleevec, and the Maxide is for edema, but seems to not work when taken 2 hrs of each other. I go to my oncologist in the next few weeks to see how my labs are doing. It has been almost four and a half months since I’ve started my treatment, and besides my situation of being tired all the time I think I’m doing okay. I’m still waiting for a call from my pulmonologist to see if they still want to do it certain test for my shortness of breath. I hadn’t needed my inhaler or humidifier until the last few days because of the weather change. Today was really weird because the temperature was 31 degrees in the morning then 60 in the afternoon.
I’m sorry my post isn’t that long today, I feel really exhausted and just need rest. I hope everybody’s doing well and God bless!
It’s been a week or so since I’ve updated. I went to my follow-up appointment with oncology, and my lab numbers are almost the same. Actually they are lower than what they should be, so I still have to, as always, continue to be careful what I touch, who I’m around, and all of the other things that are connected with being careful while having Leukemia. I am still borderline anemic but it’s nothing to be concerned about. I guess I need to find a website or source to increase my iron, even though I am on prenatal vitamins. My stomach has been upset this week; probably because of all the different things I’ve been eating at work. I need to break down and go back to eating more organic.
I have not made my appointment yet with pulmonology to have some kind of test done, but I will do that this week. I have not had to use my humidifier as much and I am still leery of the idea of taking medicine for something called “silent reflux”. I’m just tired of taking so many medicines. I have still been very tired especially earlier this week. I did have enough energy to clean a few areas in the house and do some laundry. I guess I need to make a list of everything that needs to be done in the house and start it.
As far as the Gleevec is concerned, I’m still having the normal side effects and it seems like I’m gaining weight,, which is another side effect of this medicine. I have that much hair loss, and actually my hair is thicker. I still have to clean my hairbrush out very often but I thank God it’s not bad. I think hair loss is not one of the major side effects of the medicine, but it still can happen.
In April I will be doing a race for colon cancer, something connected to my job. I did it last year and it was very fun. I actually surprised myself because I didn’t think I could do it and plus it was freezing cold. I mean, who wants to wake up at 6:45 in the morning on a Saturday to do a race. However, is for a good cause and I will be doing it in the name of one of my friends at church who has colon cancer.
I think my hopes of getting my German Shepherd certified as a service dog are dwindling. My audiologist did not want to give me orders for such, stating that my hearing loss is mostly cognitive. How can it be cognitive when somebody breaks into your car next to your bedroom window door and not hear it? I will try again with my PCP but if it happens it happens. I just think it would benefit me because I am having trouble hearing and I cannot afford hearing aids. Last week I did not go to the Deaf Super Bowl party because I decided to stay with the kids at church. I will try to go to the Silent Dinner this week but it depends on how I feel. As soon as I get my house in order I might take performance part of the VQAS just to try it. I don’t really want to throw away $80 but it’s worth a try.
Another thing that I am going to be doing this year is organize a fundraiser at my job on September 22nd, which is World Leukemia Day. I have gotten “the go” to do the fundraiser but I still have to work out a lot of things. So far, my ideas are gift baskets to be raffled, and an information booth on Leukemia. The event will be held on September 22nd, of course, and will probably be done during lunchtime in the cafeteria at my job. I will keep you updated, if you are interested in going to the event. All of the money will be going to the Leukemia Lymphoma Society. It’s just something I want to do. It’s far in advance, however, there are a lot of things I have to put together in order for it to be a sucessful.
Later on today I will try to do some calligraphy. I did have somebody ask me if I would be interested in teaching calligraphy but I don’t think I will have enough people yet. We’ll see. Thank you for reading my very long post and thank you for your thoughts and prayers.
This week has been busy with work and trying to get caught up with housework. Last Saturday I had a cooking and freezing ‘itch’. I’ve always considered the possibility that one day I will not feel like cooking and so I’ve developed this ‘cooking and freezing’ planning that my family has no problem with. Especially on days when I get home late and don’t feel like cooking. My husband bought me an awesome crock pot cookbook that is easy to use. This cooking frenzy, last Saturday, consisted of making chili, sloppy joes, BBQ chicken for sandwiches, baked ziti, goulash, and last but not least, lasagna in a crock pot. This was something new to me, and it was so good and simple. We ate the lasagna but I froze all of the rest of the foods for later.
I have a follow-up appointment next week to see how my labs are doing. I have been feeling more tired this week. Yesterday my boss told everyone to go home early and enjoy the weekend, so I left after lunch. I thought I might try to clean house but when I got home, I felt totally exhausted. After trying to walk the dog and do a few things, I went to bed and didn’t wake up til 6 pm! I had slept almost 5 hours, more than I had planned. However, I must have needed it because I felt a lot better.
After my long nap, I went to the Silent Dinner and met with some really good friends. I was able to see some friends that I hadn’t seen in awhile and informed them (in ASL) of my recent leukemia diagnosis. I now have more ‘praying’ friends of which I am very grateful for. I am sorry that I haven’t done any ASL videos lately (shame on me, sorry) but I have the time today to do something.
As far as my breathing problem, I am still waiting for the pulmunologist to call me to set up an appointment to rule-out asthma. They need to do some kind of of test that induces asthma, something I’m not looking forward to. After all, who wants to ‘feel’ asthmatic? I just want to know why I can’t breathe sometimes. The humidifier and having the window cracked a little does help at night. The doctor says my shortness of breath is probably a contributing symptom of the leukemia but not the cause of it.
There aren’t any new side effects to report with the Gleevec, which is a good thing. I’m still trying to ‘learn’ what I cannot eat. One thing I have changed is that I do not take it anymore with my Maxide because it seems to cancel out the Maxide. So I take the Gleevec a few hours beforehand. The Gleevec makes me feel sick for a while but then it goes away.
Well, thank you for taking the time to read this long post. I thank all of my friends for all of the prayers and support that you have shown me. God has certainly helped me in all ways and I know who holds the future!
It’s been a little bit since I’ve posted. Both my classes have been cancelled due to low enrollment and therefore I am finding time to do things I have not been able to do. I will still continue to go to the Silent Dinners and fellowship with my Deaf friends. I will still practice my ASL and do my videos. I was even invited to a Deaf Superbowl event. Although I hate football, it would be nice to go and hang out. Okay, I really don’t hate football; I just don’t understand it.
Our area received tons of snow and kids all around are happy that there’s no school…again. I now have eight members altogether for my Yorktown Calligraphy Guild on Facebook and I’m finding time to do more calligraphy.
My next follow up is in the next two weeks with my oncologist. I am awaiting an appointment with my pulmonologist for yet another test. I haven’t had that much of a problem with my breathing lately and the side effects from the Gleevec are still the same. (A constant disturbance in the force, if you know what I mean).
I still haven’t ordered my TENS unit yet but its on the list of stuff to do this week. Although I read so many good reviews on these units, to help with pain, I’m still skeptical. What I mean is that how can something that has an electrical current, get rid of your pain? So far, my good old fashioned heating pad has done the trick, but I can’t put a heating pad on my head.
It has been a rollercoaster since my leukemia diagnosis on October 5th, but things seem to be looking good. I have to take it one day at a time and thank God everyday for a new day, a gift. I sound like a broken record when people ask me how am I doing; it seems like I always say “just tired”. Yes, I miss eating grapefruit, pomegranate, limes, and pineapple, but I have traded all of that gladly, because the medicine is doing what it should. Thank you all for your prayers and thoughts as you support me in my journey.
I went to my oncologist this week for my monthly follow-up. My numbers are almost the same as last month. I have been really sick the past two weeks with flu-like symptoms and on top of that, one of my children has croup. This means I have to stay away from that child and wear an ugly mask. That’s okay, I’d rather wear a mask than get more sick.
School starts this week and I hope it goes more smoother than last semester. I have done some meal planning but haven’t been doing as much cooking as I needed to. Part of this problem is the price of beef; have you noticed? We’re eating more chicken and shrimp nowadays.
I actually got a wonderful encouraging card this week from a friend in Tennessee. It was a sure surprise. I went to the silent dinner for the first time in a month and it was good. I saw a lot of Deaf friends I hadn’t seen since before Christmas. Next week it will be at the mall which will have more people.
As for my new Facebook page,Yorktown Calligraphy Guild, I now have 7 members. I will be doing some kind of calligraphy later on and post it. I might even do some embossing which is something I learned how to do about 25 years ago. In case you don’t know what embossing is, it is calligraphy that uses powders and heat to create raised letters. If you are interested in calligraphy and want to connect with me, just look up Yorktown Calligraphy Guild on Facebook.
I have also revived the Hampton Roads Recovery Society Facebook which I had been neglecting due to business and my illness. This group is for metal detectorists in the Hampton Roads area. I was able to go to a meeting for the first time in over 6 months last week. Everybody was surprised to see me. I had already let everybody know via email about my leukemia and I was met with a lot of kindness. If you are interested in metal detecting or our group, please find us at HamptonRoads RecoverySociety on Facebook. For some reason I could not get spaces between my words, but oh well.
As you can see I’m trying to keep myself busy but not too busy. I still have to work and go to school, which I know when school starts I will be trying to find the time to do anything. I will try to conserve my energy as much as possible because I still have problems with tiredness. I still haven’t done my video in ASL yet for this week, but I will try better. Thank you for taking the time to read my blog. I really enjoy all of the Facebook messages, cards, and words of encouragement that people have been giving me…keep them coming. God bless!
Over the weekend I caught some kind of stomach bug. I can’t keep anything down but I am trying the BRAT diet for now, (bananas, rice, applesauce, toast). I haven’t slept much even though I’m very tired. I’m just going to rest for tomorrow. I did try to eat soup but that was a bad idea. I did call my oncologist but he said just fluids and bland foods for now out since I’m not having any fever. He said I should feel better in a few days.
I went ahead with one of my ideas and started a calligraphy club on Facebook called the Yorktown Calligraphy Guild. Check it out if you would like. So far I only have a few members but hopefully that will change. After I get at least 15 – 25 members I will submit the idea of meeting once a month such as at the library as a “show and tell” each other’s work and maybe have a theme of the month. Another idea is to demonstrate certain types of writing, mediums, and ways to do calligraphy such as heat embossing. Any other ideas are welcome.
I have a follow up appointment next week with my oncologist and pulmonologist. I will keep you updated; hopefully my numbers are better. They say that some dogs can tell if you have cancer. I think my husky knows because she’s been hugging my leg more lately. Sorry for a short blog today I just need some rest. I am so glad I know God is my Strength and Healer.