Monday, June 24, 2013
with our dgt and son in law visiting, Joel had just finished a round of chemo, and has a week off, I asked Dr. K if it was alright if we went to the Jersey Shore for 3 days 2 nights. he said " As Long as Joel feel's alright and wears a hat and sunscreen, it's OK." we were able to find a nice home to rent just for the above time that didn't cost an arm and a leg! We had such a good time, Joel is not a beach person, so he didn't even get on the beach, but walked the boardwalk, with his siblings, when he was tired we all retreated back to the shore house, watched movies, and laughed!
This Thursday, Joel Lord Willing will start a new round of Chemo this coming Thursday, if there are no delays this will take him to the last week of August, Then comes the Maintenance Phase ...which will cont for about 2 more years, but treatments will be less often, and he will have more stability in his life. Joel was looking forward to returning to College this fall, but sadly he will not be able to,....maybe the spring??? only time will tell.
Photo I leave with you today, is myself , husband and our Children, Megan, Joel and Robert.
Monday, May 20, 2013
Joel was invited to attend his College Gala, ( Prom) a friend of his wanted him to have an opportunity to get out and enjoy himself and see some friends that he has not seen in quite a long time, we notified his Oncologist Dr. K, and he said that if Joel had felt well, it was alright for him to attend. It was such a great time for him. he wore a nice pair of black trousers and we brought him a nice vest to wear. the funny thing was that his Dad had to work and was not home on that evening. I didn't know how to tie a tie, and Joel and his brother Robert didn't, I even watched a you tube video trying to learn how to quickly, and well I couldn't do it, Joel was getting impatient, as we had a 2 hour drive to his College, and as always we were running late, so you can see what Joel did in the photo, LOL.
Joel had a great time, the Gala was on the Spirit of Philadelphia, a dinner cruse ship in Philly.
Saturday, April 20, 2013
Joel told me yesterday that his teeth hurt, made me think about all the things we take for granted when we are healthy. for example, our teeth, we brush them, use dental floss, and see our Dentist every 6 months for Cleaning. But for Joel, he stopped seeing the Dentist when he was diagnosed with Cancer. he is not allowed to even floss his teeth. Thankfully he can brush them but with a soft toothbrush and gently. Because his Oncologist does not want him to get any infection of any kind, and flossing he can tear the gentle gum tissues, or even to have teeth cleaning the Dentist can tear or injure the gum tissue by using their pick tools, no problem for us, but not good for Joel, plus with his clotting factor's down he would just bleed, and bleed.
Joel told me yesterday " my bottom teeth hurt" It just so happened that I was Volunteering at the Hospital yesterday, so I was able to go and see Joel's Oncology Nurse Megan, and told her, she said " go get Joel, bring him in and we will see where his blood counts are, and call your Dentist and see if they can see him today!" of course this is yesterday a FRIDAY. and about 11am! Thank the Lord, I called our Dentist, they had a 2pm appt open, AND they took our new Dental Insurance!!!!, Raced home, grabbed Joel, brought him to the Oncologist office and they drew his blood., they gave us a letter for the Dentist that said he could only be evaluated by non invasive means. which basically meant what they could see with their eyes, and xray. what the Dentist said she saw was an abnormality on his xray, "I think he may need an Root Canal", by the time we came home, the Oncologist Nurse Megan was calling us, wanting to know the results, I told her, so an antibiotic was ordered., I left quickly for the Pharmacy, by the time I got home, Megan the Oncology Nurse called again, this time she told me that Joel's blood counts were lower than they were earlier in the week, this has been happening lately for Joel, the one thing the Doc is concerned about is that his body could be making Cancer cells again, last check he was not, and the only way they check for that is to do a bone marrow aspiration. so on Monday 4/22/13 Joel will undergo having a bone marrow aspiration. Joel Hate's when they do it," it's painful " he tells me. "Megan" told me not to worry, she said either way, Dr. K would do a bone marrow aspiration because if Joel needs a root canal, they need to know if his body is producing abnormal cells! talk about hyperventilation. I am thankful that God is in control.
you all know how I have been going crazy trying to find work, and haven't found anything to date, but honestly, things can change with Joel any time, and I just couldn't focus if I had to work. I am Thankful that I do not have that burden right now. Monday is going to be a crazy day, Joel for bone marrow aspiration, I am not sure if he will get Chemo on Monday , thinking probably not, I also have to call an Endodontic DMD, hoping that the Doctor that was recommended to me accepts our Dental Insurance.
There are many things, that just stab at my heart, I overheard Joel telling his brother if he can't go back to College in the fall, perhaps he can take some type of on line class, ( his course work for Education that he needs to complete, is not on line) , hearing him tell his brother that broke my heart, as in January he was talking about being a dorm student in the fall. Also, as I shared with you all, Joel had gotten invited to his College Formal which is May 3rd 2013. He told me last night " I think I am going to tell Elizabeth that I probably will not be able to go" I told him " You don't know that Joel", he said " I thought you would say that Mom, but I wanted her to know now that I most likely won't be able to go"
My Heart dear friends, this is so very, hard. I do not know the future, for my Son. but I know who Hold's his Future, and Praise the Lord, Joel knows that too.
This is a Photo of Joel helping out at church before Cancer.
Thursday, April 11, 2013
was reflecting the other day, on how our ALL our lives have changed since Joel's Cancer Diagnosis in Sept 2012.
Joel's life has changed, His Blood work constantly changes, It is never normal, but often is so low, he needs blood transfusions, has to wear a surgical mask; which he doesn't like to wear mind you, he told me he can hear kids whisperer to their parents asking " why is he wearing that mask"? just yesterday while getting out of the house he went to the mall with his brother, just to walk around, and was approached by a mall security guard, asking if their was a medical reason for wearing the mask, when he said "yes" the security asked him if he had an ID stating that! when he said "no" the guard proceeded to drill him as to his condition, etc. very embarrassing to Joel! and when his brother told him he had Cancer, the Guard got upset and said ' I'm only doing my job!' that spoiled his trip and he wanted to come home! He can't be around people who may be minutely ill, unable to make plans; because at the spur of the moment he may be called in for repeat lab work or to see the Oncologist. His hopes are often deferred, his Chemo treatments can be delayed due to low blood counts, just as I was writing this, the phone rang, and He is scheduled for Chemo treatment next Thursday, and we were planning on Monday. not that we had plans mind you, just things are always unpredictable for him.this doesn't even begin to say how he physically feels, side affects from the chemo, rashes, constipation issues, losing his hair, and not just on his head.
Despite all of the above, he remains in good spirits, taking the good with the bad. he is ever a blessing to my own heart, and he brings me often to shame. times when he is "grumpy" I know that is when he especially isn't feeling well, usually days after his chemo treatments.
How OUR lives have changed:
I never would have thought we could manage just on one salary, and to be honest we can't, but right now I am out of work, My Work Life changed! after coming off of FMLA and Short Term disability as I was needed and wanted to be with Joel, I when released to return to work, I didn't want to return Full Time, I not only lost my previous job, but also am not getting unemployment because I didn't take a FT job. when I was released without restrictions. lost our health insurance, but rejoicing that my Full Time Pastor Husband, also works as a paramedic, and was able to pick up Their health insurance!!!! PTL! I shouldn't complain I ENJOY, ENJOY, ENJOY being a FT Mother, and Wife, actually this is a 24/7 Job!!!
Medical Bills....have changed our life.....getting Cancer is not for the poor! even with insurance, paying deductibles are expensive. but it is better than paying for one of his chemo treatments which I saw was $59,000! that was not even in patient! every time we see his oncologist, that is $35.00 and we see him alot! all of this has changed by Husband! no longer can he devote all his time to being a Pastor, it is divided between Pastor, FT Paramedic, Husband and Father.
Life has Changed for Joel's Siblings: Robert and Megan.
Robert who has been Joel's constant companion since Sept 2012. he just now has felt comfortable about going away for a weekend. Robert who has not been able to find work since his College Graduation, has had time to be with Joel, but I fear he is divided about leaving Joel. and Megan his dear sister, who lives in Oklahoma. feels so far away, which she is, Joel is her baby brother, this is hard on her.
Last night at Church, I shared how difficult this is, I know Joel is "safe in the arms of Christ" Joel reminds us always , he says it all the time..."nothing takes God by Surprise" I am concerned, his Cancer isn't something they can "cut out" altho last check, i.e. bone marrow aspiration, they did not find any abnormal cells, PTL, his treatment at this point 2 1/2 years worth is to make sure it stays that way.
the photo I leave with you today is Joel and his Nurse Megan.
Sunday, March 17, 2013
Yesterday was Joel's Birthday, it was a special day indeed, just for the fact that he had one!!
Often we take everyday for granted, wake up, go to work, school, whatever is lined up for our day, never thinking for a moment anything out of the ordinary could occur.
Our life as you all are aware is not ordinary, so every day is precious, and on March 16 we Celebrated with Joel his Birthday!. Yes my husband and I spoiled him, and why not!! we are so happy we have him to spoil!!
the photo I leave with you today is Joel with his older brother Robert, at Red Lobster, that was his restaurant of choice to have his B-Day Lunch!.
Wednesday, March 13, 2013
In case you were not aware Chemotherapy is the administration of drugs that are capable of killing cancer cells, or at least retarding their growth. Leukemia is treated with these drugs. Joel gets Chemotherapy Orally, Intravenously, Subcutaneously and Intrathecal, which is when they inject the Chemo in his Spine. Sometimes he just gets the Chemo both Intravenously and Intrathecal every two days, sometimes it is Orally, every day and Intravenously every 2 days, and sometimes it is all 4 ways at the same time! day one may be all 4, then they get spread out as the week goes on.
Cytarabine, L-asparaginase, Methotrexate, Prednisone , Vincristine, Daunorubicin, 6-Mercaptopurine, Cytoxan, and 6-thioguanine, have been his main stay Chemo Medications.
Joel's recent Visit with Dr. K, he informed us that Joel is now 2 months into his 3 year treatment plan. ( mind you he was diagnosed with Leukemia in Sept 2012 and has been undergoing constant treatment) we knew in the beginning that Dr. K said it would be about 2.5-3 years of treatment, but we thought that started on day one! Oy Vey!
Joel's Chemo has been both in patient at about a week at a time, admitted one week, home one week, etc... And outpatient. Currently this round of chemo he is currently undertaking last 52 days and Joel is happy because it is out patient!
We have been in and at the hospital so much, that some employee's think I work there, Lol, they see me so much!
On that note I have to pause and send a shout out to the Nurse's and Physicians, and even non medical staff of the Lehigh Valley Health Network, they have been the most caring staff to Joel and our family. They are in the Health Care field, I know what you are thinking, and they should be! But it is sad to say that there are many in this field that is uncaring, and unkind. I am happy to report; I have not found that here in the care and treatment of Joel. When I go to the hospital Pharmacy, they always ask, "How is Joel today" is he in or at home" wow, that just always makes my day, to think that someone ask me how he is!"
In fact I have been so impressed, that on this past Monday when Joel was getting his Chemo intrathecally, I walked to the volunteer office and told them since I am unable to donate hundreds of dollars, I want to give my time, so I signed up to be a hospital volunteer!
Yesterday Joel has felt well, his last round of chemo drugs didn't make him feel sick as they have had in the past, but this new round that Joel just started on Monday, Dr. K, said "we are hitting him Hard" so back Joel goes on his anti nausea meds!, and feeling tired, weak and washed out! but I keep thinking....it's all good, they are keeping those abnormal cells away!!!
Thank You for praying for Joel and reading my blog, as one blog friend said to me, "Isn't it amazing to know that people that Joel nor I may never meet until Heaven are praying for Joel."
I can truly say....Yes it is Wonderful! xoxoxo
Friday, March 08, 2013
I have always been over weight. I have horrible childhood memories...." Hey do you want a peanut?" , " you would look so pretty if you would just lose weight" " I hate shopping for you", this coming from my mom when shopping in the "chubby" section of a store, or the all time kicker " Oh your poor husband" Yep I probably heard it all, sad to say, and if you are noticeable over weight you probably have too.
I can't say that I have been on multiple diets, I have been on a few...in about 1979 I was on the Cambridge Diet, which consisted of power mix of stuff that you add water too. it boost a mere 330- 400 calories a day, I did lose weight but who wouldn't on only those calories a day, and yes when that stopped so did the losing weight, and back it came with some extra, and not just extra pounds, I got gallbladder stones from this diet!!!
next was the tried and true Weight watchers, (of which I currently find myself on again) yep I lost weight, this was 1990's but not being a very creative cook, I literally made and ate the same thing everyday!! I got bored and just stopped. and so did the losing weight! back it came on, and then some.
my weight slowly began to rise higher and higher. , I often hear those blessed folks who never had to diet, eat what they like, yadda, yadda, you all know the type, or those that have never been more than 10 pounds over weight, and are very active and work hard to maintain their weight. These folks can't imagine how one can get so grossly overweight. " How can someone get like that" is what I hear, of course I am the overweight person sitting their listening to them, actually wanting to crawl under a rock about then, of course this conversation is usually in a lunch room while that person is eating a salad, and I have like 3 slices of pizza, 2 cans of coke or a quart size of Chinese food, yep can't imagine how one can get so grossly overweight, I've always managed to mumble out something, like my famous line...although it is quite true, but those who know me have heard me say it many times: "I don't know that I'm over weight, I don't see myself as fat, I am like a reverse Anorexia person. I have a distorted body self perception problem. an Anorexia person will look at their self and see fat, and I see my self not fat! LOL, it is funny but pathetic because it is true!! I often see a photo of myself and I am in total shock, " I can't look like that" LOL. but I will make that comment or something like that and someone will always say....E. Bird ( that is what everyone call's me) you are not fat! so it just feeds into my mindset. now I know it doesn't make scene , but all my clothes fit good, and I think I look nice, so I'm fine with it. So...the weight just keeps on rising.
FINALLY: My Family Doctor, doesn't like it, she does some blood work, and tells me "you are border line diabetic and if you don't do something about this you will get diabetes." my beautiful niece Tammy had diabetes, ( I can say had because she got a Pancreas and Kidney Transplant and no longer is consider Diabetic!!! ) but she told me " Aunt CC you do not want to be diabetic" so I finally decided to try again to lose weight. during this time my husband who always seem to be just the right weight had also gain some pounds, so we went to see a bariatric doctor. under medical supervision we follow a strict diet and lost weight. all was going well until
Joel got Cancer. my world fell apart, the strict diet stopped.
getting back to my title "My Weight and Joel is their a connection? Yes their is.. It 's called STRESS!! I eat when I am Stressed, I eat when I am unhappy, I eat when I am mad and angry! I started to gain back some of the weight I lost since September, I saw an ad for free start up on Weight watchers, I thought I would try again, so far I lost 5 lbs, and have a great network of friends!! Now when I get Stressed, Angry, unhappy, I eat an Apple!
The Photo I leave with you is Me before my weight loss and Joel before Cancer.
Thursday, March 07, 2013
What is a Friend? Webster Dictionary defines a Friend as : one attached to another by affection or esteem .I like the urban dictionary definition better: A real friend is someone who: It's okay to pass gas in front of, you don't mind talking to on the bus for a least 20 minutes, you can borrow $5 and never has to pay it back, you will actually call up to do stuff.
This definition does make you laugh but in reality it's true. A friend is someone who stays with you through thick and thin. I am thankful that Joel and our Family have such Friends!
I have been out of work since September 2012 with the exception of returning for almost 2 weeks in November, I tried to return but my mind wasn't focus enough to keep working, I kept thinking about Joel, I became very anxious and had to go out on a disability, because of that I lost "my job" I had been out so long they had to post my position. It's ironic because just 3 days ago from this writing I got released to return to work from my physician, now I have to frantically try to find work to keep my medical insurance. I share that account with you because of friends that our family have. Being on disability meant I was only bringing half of my salary home. Friends not knowing what a financial hardship that caused us, (i.e. we didn't tell anyone) Friends would give us money, some we didn't know who gave it, anywhere from $50.00 to $300.00. Which has help us so much!.
Friends would come and visit, many times when I have been at my lowest point, I would get a call from a friend in Maryland, or New York, which simply they would say, I'm coming to visit, a dear friend in Maine would send me a text " I'm Praying for you" What an encouragement they have been, where we could get together in Person or phone and cry together, pray together and laugh together. In the hallway of our Hospital there is a saying that states “Laughter is the best Medicine" I can say that it is true: it is soothing to the forlorn and weary heart! Joel's Cancer has impacted our Whole Family, and those who love us, Friends have lifted up our weary hearts.
Joel's Friends: Friends are important, and when you are 22 years old, had to drop out of College just 2 weeks into the school year, tried multiple times to see your friends, plans made only to have them thwarted because you have to get an unexpected blood transfusion, or the Doctor calls and wants to see you, or your Friends have a cold and you can't be near them, It is difficult. I can say Joel has some wonderful friends!
Praying Friends: I know that Joel is prayed for literally around the World! I don't know what God has for Joel and our family as we look to the future, We have traveled this path only since September 2012, just 6 months, and the road ahead is long, I am Thankful that we are not alone, Yes, God is always with us, that is a given, as King David stated in Psalm 139:6 " Such Knowledge is to wonderful to me, to high I cannot attain it" But in addition to God, Our True Friends are here to stay with us during this journey. Thank You to our Precious Family and Friends who are reading this!
The Photo I leave with you today is from Joel’s College Friends from Cairn University. They painted the “College Rock” in honor of Joel.
Jeremy Taylor ( 1613-1667) a Clergymen in England stated it best: Friendship is the allay of our sorrows, the ease of our passions, the discharge of our oppression, the sanctuary of our calamities, the counselor of our doubts, the clarity of our minds, the emission of our thoughts, the exercise and improvement of what we dedicate.
Monday, March 04, 2013
September 2012 came and went, with 3 weeks of that month were spent in the hospital, Joel was finally able to come home. He was weak, and had some issues secondary to the chemotherapy, Joel was so afraid that he would have nausea and vomiting, The Oncology Nurse assured us, that N/V was probably one side affect Joel would have very little of, with the advancement of anti nausea medication, it has been pretty much true to her word, Joel has had little episodes with that!
Once discharged from the hospital, we were pretty much going to the doctor's office everyday. for either blood work, blood transfusions, doctor's visit. on one Doctor's visit, Joel had told Dr. K that he had some leg pain, so he wanted Joel to get an Doppler Ultrasound, to make sure he didn't have a blood clot, since Joel had not been very active, ( as he was on steroid, which made it difficult for him to walk, he had to have a walker) the results were positive, He had a blood clot, so Joel had to have anticoagulant medication. which meant I had to give him injections at home. that same day we discovered the blood clot, he was coming out of the bathroom while at the hospital and fell!! so we had to spend hours in the ER before he could start the first injection to treat the blood clot, to make sure he was ok. So...xrays and CatScan Later he was given the ok to start the treatment for the blood clot! and all this was just one day!!!!
Joel was given instructions on when to call the Doctor's office, it was very user friendly guidelines. If you have this complaint, than call no matter what time it is...etc. one instruction that they gave is if Joel had a Temperature of 100.5 or higher he was to call right away, or if he had "chills" without a temperature he was to call right away.
In October 2012 Joel had typical routine appt with Dr. K for blood work, everything was "good" (i.e. meaning he didn't need a transfusion that day) and we were sent home. Joel was neutropenic which meant his white blood count was so low to zero. he would be unable to fight off any infections. We have to be so careful when Joel is like that, he can't eat any fruit unless you can peel it, no fresh salads etc... he is often Neutropenic and he currently is at the time of this writing, but on that particular day he was feeling ok, and home we went. my Husband who works part time as a paramedic was working until 12mn that day, and my oldest Son was also working, so Joel and I were alone in the evening. we were watching TV together and Joel said out of the blue, " Mom I feel Chilled" I took his Temperature and it read 98
well it's not 100.5 and he didn't have any other complaints, so I thought I would keep an eye on it. in the span of 2 hours Joel became gravely ill. he was almost unresponsive, his heart rate was rapid, he was breathing heavy, I called the Doctor on Call for Oncology, and they said "get to the hospital right away".....NO CAR!! I had forgotten, we had NO CAR!! As God would have it, my husband was on duty, I called him and said " Joel has to get to the hospital right away" my husband and his crew came and got Joel, and I and off we went to the hospital ER. by the time Joel arrived, he was very sick, the ER Physician said Joel was his sickest patient that night. He had a very high fever, and was semi responsive. that night Joel was seen by a medical student , ER Resident and ER Attending, and ER Nurse all were wonderful, Joel was never alone in that ER Room, someone was always there with him, at one point there were like 8 people in that room taking care of Joel. I feel horrible remembering that event, as I didn't follow instructions to call for "chills without fever" He was admitted into the Intensive Care Unit. It took him a while to recover from that event.
It never occurred to me that we could lose Joel from an infection that Myself or you reading this normally fight off without knowing it, I will tell you I was so scared that night, that we could have lost Joel to an infection.
Sunday, March 03, 2013
looking back on September 10, 2012 it seems a blur, I remember that morning waiting for the results of the bone marrow aspiration, my husband and I had to work on that Monday, I of course had contacted my Practice Manager very early that morning and told her that Joel was in the ER and that I would not be in for work. My husband also had to work, but did not call out. (We both had the rest of the week off as we were due to be in Washington DC,) my husband said he had to leave. he later admitted to me stating " I don't know what I was thinking, I should have just stayed at the hospital. but off he went to work. by that time my oldest son Robert was with Joel and I. at about 12 noon, Dr. K returned to Joel's room. He said " I personally, looked at the cells of his bone marrow, and they are abnormal, I have to wait for the official results from the lab which will take about a day or two, But I do this for a living, and have been doing this for a long time, and the official results will only tell what I already know...the abnormal cells are Leukemia Cells, they are jammed packed in the bone marrow, that is why Joel has been in so much pain, everywhere"
I quickly looked at Joel's expression, trying to get a clue if he understood what Leukemia meant, no expression, finally Joel asked Dr. K, " How do you treat that?"
the response was " Chemotherapy" Joel didn't understand what Leukemia meant, but he fully understood what Chemotherapy meant, CANCER!,
Joel Cried....this was the stabbed you in the heart and twist it deep in your chest moment for me, my Son, a 1000 thoughts ran through my mind, but I just wanted to comfort Joel, He took a deep breath and said " I'm ok, I'm ok, God is Good and He is still on the Throne"
My husband had just arrived at work, when he was called to return to the hospital, what a nightmare, but I really appreciated the medical staff that day, the Nurse's , Dr. K, and other physicians, that had come to see Joel, they explained everything , what they were going to do, that was on a Monday, by Wednesday of that same week Joel's first round of Chemotherapy had begun, what was amazing is Joel had begun to feel better by the end of the day, his pain was easing up, Dr. K explained that the Chemotherapy was killing the abnormal cells. Joel had spent at least 3 weeks in the hospital before he came home.
My Husband and I were so Thankful that we had that week off work, I had asked Dr. K when I should consider stop working, and He told me " Now Joel needs you now" that was all I needed to hear, I immediately called my Practice Manager, who wisely informed me that she had already taken me off the schedule.
Since my Children were born I have worked in the Health Care field. I have missed their birthdays, worked Holidays, worked overtime, now I am going to be here for Joel. I applied for F.M. L. A.
The Treatment for Leukemia, is very long, it scans a period of 2 1/2-3 years. it is not like other cancers where they can surgically remove something, or just give 6 months of chemo, than remission. It is a cancer of the blood. and treatment to me seem's complex.... I am so glad that I have been able to be with Joel in and of course out of the hospital, but it has not been easy. It has been a roller coaster ride of emotions, for me, Joel on the other hand has been remarkably calm but I have been on the verge of a nervous breakdown. who would know, how one would respond in this situation...
I had to see my primary Doctor to get my fmla papers completed, I was informed that my Doctor couldn't see me for like a month, I explained the situation and said "I can't wait a month, I need to be seen ASAP" this conversation went back and forth, until, while in the waiting room of my Doctor's office, I lost it, I pounded on the desk and screamed " I am going to have a nervous breakdown right in this office"....I got an appointment the next day.