Posted by: Mary Crocco | August 1, 2013

The Roundtable Conclusions

42-21636433[1]

In case you are interested, this is an informative website about CML.
http://www.cmleukemia.com/index.html

August 1, 2013

My task for July was to call my oncologist to see if my body was lacking magnesium, (to explain my leg aches.)The nurse assured me that levels for magnesium were checked regularly, but to come in to double check and she would add other things to the lab order, as we were still trying to figure out what was causing my stomach problems.
To make a long story short, magnesium levels were normal, along with everything else. The conclusion for my stomach aches – long term usage of Gleevec, my daily oral chemo drug. The doctor and his nurse practitioner reminded me that I am a pioneer of Gleevec. There is no long term data and I’ve been taking it since 2003. The doctor’s other CML patient has been taking the same drug as long as me, and lately he has been experiencing three days out of the month with projectile vomiting. So as data is collected, it looks like stomach problems may be the result of long term use of Gleevec. In other words, Living with CML.
So what do I do? If I try a different drug, or lower my dosage, I’m not willing to suffer the dire consequences – reverting to before I reached total molecular response. I could revert to another phase of CML, taking a big risk, with a bone marrow transplant lingering in the horizon. No, I am not willing to take the risk. I will live with my stomach problem, emphasis on ‘live’.
In my roundtable research, I also went back to my gastroenterologist. He agreed that I could have my endoscopy follow-up a couple of weeks early, (to see if the medication was healing my gastritis/esophagitis). The results are in on Aug. 9th. He continues to believe the cause for my stomach problem is Gleevec.
The last doctor I added to my roundtable was my primary doctor. She thinks the gastritis/esophagitis does affect my stomach. She can’t rule out Gleevec, as there is no data, but between the two, she says it’s no surprise I have stomach problems.
During my visit, the doctor could see my back/hip was still bothering me. I can’t sit or stand for long. She examined me again, this time ordering a bone density test, (it’s been years) and a hip CT scan. Results: osteoporosis of the spine and borderline hip! OMG. She suggested I’m a perfect candidate for an IV infusion (Reclast), due to my gastritis/esophagitis. It’s better than taking more pills, and she told me to check with my oncologist. She also ordered physical therapy for my back/hip.
Result: I have an IV infusion scheduled for August 2nd. Everyone agreed.
I also started p/t. The first place I went was horrible. Incompetence and apathy as I sat in the room, waiting, as the therapist was in and out dealing with other patients. It was ridiculous. As I had time to read posters and flyers in the office, I saw there was one location with a pool. I jumped right on that, having her fax my paperwork over and making an appointment.
It was a good decision. One p/t gave me his undivided attention, a back/hip massage, (which is what my doctor ordered, but the other place didn’t agree with). After that, I was sent to the pool where another p/t demonstrated appropriate exercises. This is going to work, my back already feels better, and it is proving that my own exercises I do at the athletic club were all wrong. I feel confident I will be painless soon. What a great feeling!
Before I started the p/t, I was attending writing classes on Saturday mornings. The pain from sitting and from the hard chair was unbearable. I took a pain pill before class last week to avoid pain, and I kept falling asleep in class. I’m hopeful the p/t will keep me from pain without a pill this Saturday.
Sadly, the p/t called today and said the pool heater broke. She isn’t sure when it will be up and running. I’m thinking I may go to the athletic pool and do the exercises she taught me in the meantime. Why not, right? I’ll miss the massage before hitting the water, but it’s better than not going.
A friend invited my son and me to her musician daughter’s one woman show, at her home. We planned to go, and were looking forward to it. I didn’t make it. It was the day after my endoscopy and my stomach was upset.
At least I’m managing to get through the writing classes. Only three more left.
I registered for two night classes, but only made one. They were just one night classes, but one was better than none.
So, for August, it’s an IV infusion, lots of physical therapy, results from my endoscopy, a mammogram, a pap test, and a visit to my ENT doctor. The last three days I’ve been getting dizzy. He had no openings on this side of town, and I don’t want to drive far when I’m experiencing dizziness, so next week I’m being squeezed in at his nearby office. I guess my perforated ear drum just needs to be cleaned again; at least I hope that’s all it is.

This month I will be sending my writing coach the final draft of my book! It’s time for copy editing! Now that’s exciting!

I haven’t read too much this month, but I did read and review a few books and posted on my blogs and other sites for authors.
http://www.mrc-bookreviewer.blogspot.com

My son is excited his second CD will be released on August 10th.
http://bobbymeadermusic.com/

Check out Bobby’s BIO I wrote for his site: http://bobbymeadermusic.com/portfolio/

My grandson is enjoying Gymboree and visiting lakes in Reno, NV. (I miss him)

My son said this weekend they will try camping and taking out their boat for the first time since Alex was born. He was two in June.

Thanks for reading!

Mary

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Posted by: Mary Crocco | July 4, 2013

Chin Up

pool

July 4, 2013

I’m forcing myself to write today because I’m overwhelmed with emotion. I’m trying hard to have a positive outlook.

I should be ecstatic that I didn’t see any doctors the entire month of June. I am, of course, happy about that, but unfortunately it doesn’t mean I had a good month. This is what Living with CML is all about – The fatigue, the depression, not to mention the physical side effects of Gleevec – my daily oral chemo therapy drug.

I started the month being able to go to the therapy pool. I was thrilled to be feeling so good that I went every day the first week. I took an Ai Chi class on Mon/Wed, followed by exercising for an hour on my own. I took an arthritis class Tues/Thurs, again followed by exercising, and on Friday when no class was offered, I exercised in the pool on my own for an hour. I felt exhilarated, almost normal.

On Saturday, June 8th, I attended the CML conference. (I previously wrote about it on my blog). So here I was, being active and productive six days in a row! I couldn’t believe it. I really felt back to normal. Then my body said, I don’t think so.

Sunday I felt the ‘hit by a truck’ syndrome, and experienced bad back pain, most likely from sitting too long, and on a hard chair. Okay, I thought, understandable, I must have overdone it a bit. Who am I to think I can do all of this, anyway? (Excuse me while I move the box of tissues over to the computer).

Monday I awoke with a sore throat. It lasted until Wednesday, so on Thursday I saw no reason not to go back to the pool. After all, I had physically rested for three days. I say physically because emotionally, there was no rest. Always trying to help my mother is a challenge. I try to make her life easier and more comfortable, (from 3,000 miles away), but my efforts become less appreciated each time. Speaking with her nurse’s aide all week as I was purchasing items did help, but it’s hard because nothing I do makes my mother happy. (Tissues)

Back to Thursday, I thought I would modify the amount of excursion I had put on my body, so I decided to cut the classes out and just exercise on my own, for an hour, from now on. As I was exercising, my back and knee started giving me pain. I stopped immediately. I don’t want to have surgery on this knee, so I know when to stop. It’s ironic because I go to the pool to avoid pain and surgery, but then have to leave when it hurts. The pain continued throughout the next week.

The last week in June I had planned to fly to Reno, for my grandson’s 2nd birthday, so I rested in preparation. I made it to my son’s on the 27th, at about midnight, and all was good.

I spent the 28th with my grandson and I relished every minute. We had a great time. Later that night, I was baking an apple pie when my son noticed I was getting tired and had back pain, it was hard to stand. He stopped his party duties to give me a hand. I loved spending this time together, we laughed as we tried to make apple tarts, and it was the best. I don’t think he knows how much I miss him. (Where are the tissues?) I was over exhausted when I finally made it to bed, and suffered from over fatigue, sleeping less than an hour.

In the morning I tried everything to get it together before leaving my room. I took some time to try and gain back energy, hoping my back would feel better.
Record breaking heat took place all day, and I stayed inside 95% of the time. But with the door being opened and closed so often, the house was still pretty hot. One of the side effects of Gleevec is it doesn’t react well with heat and the sun, needless to say it took a big toll on me, both physically and emotionally. I felt my skin beginning to wreak havoc. The next day, Sunday, I suffered from stomach aches. But I was happy it didn’t develop into the previous problems I from last month. I was looking forward to Monday because I would be spending the day with my grandson, as it was a work day.

Monday started out great. My grandson and I had the best time together. He took a nap which helped my energy level continue, and I could rest my back. Then at about 3:30 my stomach acted up again. By 4:00 it was full blown into what I had suffered last month. At 4:30 I had to call my son at work and ask him to come home. He arrived immediately and I spent the rest of the day and night sick in my room. In the wee hours of the morning, I suffered such leg and back aches I had to walk around the house for hours. When I tried to lie down, I just couldn’t relax; my legs were out of control. This has been happening more often again – it comes and goes, but lately it has progressed.

My flight home was the next morning, and I wasn’t 100%, but I had no choice. I took muscle relaxers beforehand to try and get some sleep, but they didn’t kick in till I was waiting to board. I slept the entire hour flight home.

Once I was home, I crashed. I slept and slept. On Wednesday, I was sick again. Hoping to be back to normal is all I’m thinking about. I saw a commercial today advertising my new RX that was prescribed by my gastroenterologist last month. It stated one of the side effects is a deletion of magnesium. I googled the symptoms of low magnesium and it said muscle aches and cramps.

Yup, you got it, so I’ll call my oncologist tomorrow and see if a blood test will show a low magnesium count. Maybe this will explain the very intense leg problems I’m experiencing lately.

On a positive note, I’m enjoying editing my book with the help of the best writing coach ever! He has such patience and expertise helping me with my first novel. I’m forever grateful he has faith in me and my book.

I’m reading two great new books to review, and that keeps me sane!
http://www.mrc-bookreviewer.blogspot.com

I’m also looking forward to hearing my son, Bobby’s, new 2nd CD. He’s filmed a video to promote it and is having a great time with the production. http://www.youtube.com/watch?v=qSPgUT6YGJE

As for the rest of July, all I can do is hope I’ll be B2N.

BTW – the Tonic Water with Quinine didn’t help. It tastes horrible and from someone who never drinks carbonated soft drinks, it was hard to get down.

VALIDATION! http://www.cancernetwork.com/chronic-myeloid-leukemia//article/10165/2137845

Thank you for reading!
Mary

Posted by: Mary Crocco | June 8, 2013

Sharing time with fellow CML’ers

CML Conference 001

Living Well With CML
An Educational Program for Patients and Caregivers
Hosted by the National CML Society in conjunction with Novartis Oncology

Living with CML, (Chronic Myeloid Leukemia) for ten years, today I was lucky enough to share a few hours with real people, good people, who live with CML.

What a difference it makes to look into the eyes of someone who shares a rare disease. Having communicated on social media with questions and concerns doesn’t compare with actually talking face to face.

It wasn’t a packed room because CML is a rare form of leukemia. I didn’t get to speak to everyone, but the couple and gentleman at my table were delightful. The wife was the caregiver and shared her feelings about caring for her husband, and her husband talked about his concerns. The gentleman who sat with us killed two birds with one stone – he conducted business the day before and when he found out there was a CML conference, and living with CML, he decided to attend.

Leading CML Specialists, a Social Worker, The National CML Society Advocates, and Kareem Abdul-Jabbar made up the panel of experts.

The information was familiar to me, as I’ve been living with CML for ten years; however, I did learn to ask if my blood tests were on the International Scale. I had never heard of this scale of comparison, and will be sure to ask my oncologist at my next visit.

Surprised that our special guest, Kareem Abdul-Jabbar, who suffers from CML, took time from his busy schedule to appear was a treat. He shared his story with us, and hearing it live certainly made an impact. Earning my full attention was when Kareem mentioned how he dealt with one of the side effects of his oral chemotherapy medication – cramps – especially hand cramps. I suffer from cramps every single day, so when he said he drank tonic water with quinine, I wrote it down immediately.

On the way home, I stopped at the first store I passed and picked up four 1 Liter bottles. I’m working on the first bottle and hoping for miracle results. Driving home cramped up my hands, so I had to wait a couple of hours for them to subside enough to write this blog. Thanks to Kareem, my new choice of beverage is tonic water with quinine. I’ll report the results in my next blog as I’m sure it isn’t an instant cure.

Besides the presentation being informative and well done, we were fed! A delicious breakfast was waiting for us, followed by a sandwich and salad buffet being served by The Renaissance Las Vegas. I enjoyed drinking hot tea during the entire presentation and a delicious lunch.

Networking took place, and it would be nice to hear from others – maybe some will drop by my blog and say hello, or drop me an e-mail.

Thank you to The NCMLS and to our special guest, Kareem Abdul-Jabbar, for a lovely and informative conference.

As always, thanks for reading!
Mary 

Posted by: Mary Crocco | May 30, 2013

On the Mend

blog 4

June 1, 2013

My visit to the gastroenterologist went great! Biopsies showed no cancer! I was given a prescription for gastroesophageal reflux disease and will follow-up in 12 weeks to review the response to the intervention and to schedule another endoscopy.

My esophagus was very inflamed, which accounted for all my stomach problems. So I’m on the mend! I asked how long before I start to feel better and I loved the answer; about a week.

I missed my son’s graduation in Reno. I had hopes I could have been diagnosed and treated at the first gastroenterologist visit, therefore able to attend, but that didn’t happen, however, I feel confident I won’t miss my grandson’s 2nd birthday celebration at the end of June!

The first week of May began with a visit to my ophthalmologist. He prescribed an aggressive treatment for my chronic dry eye. I re-visited three weeks later and he was happy with the results of his prescribed three week treatment as much as I was. It’s a plan for the rest of my life – drops once an hour all day, every day. It works – the end.

During the month my perforated eardrum started giving me trouble. It felt clogged and became progressively worse every day. I kept thinking it would go away, certainly hoping it would. Unfortunately, I had to make an appointment and see my ENT doctor. He removed a lot of dead skin that accumulated in my ear canal. He said, since it isn’t healing, and probably will not, and I’ve chosen not to have surgery, to visit him every six months to remove any accumulation. Fine, at least it feels better.

There will be NO more surgeries for my eye or ear!

I’ve canceled my dental cleaning twice, looks like I can keep my May 31st appointment.

So I was wrong in my self-diagnosis that the flu shot was the reason for my stomach problems. So much of the diagnosis makes sense to me now. It seems what most likely caused my gastroesophageal reflux disease was medication. Living with CML I take Gleevec, an oral chemotherapy pill daily; I also must take an aspirin with it. Between my chemo drug and anti-inflammatory drug, which I take only when needed, they apparently did a number on my esophagus. Knowing what was wrong and being treated for it with a good prognosis is a great feeling.

I’m going to give my treatment a week, and then I’ll be hitting the therapy pool! My goal has always been to alleviate the anti-inflammatory meds all together. The pool helps so much, and once again I have hopes nothing will stand in my way of exercising daily in the therapeutic warm water.

I finished writing the first draft of my first book! Super stoked! (As my musician son would say) Of course the editing and revising is a very long process, but I feel productive getting the draft done.
One of the things I’ve figured out from my reading and book reviewing is I’m not writing a historical novel as I first thought. The genre is contemporary cultural. It’s a new genre and I think it fits.

So I’m back on track! As of this moment, I have NO doctor visits scheduled in June. I hope with all my heart it stays that way.

Along with my son’s graduation, I missed a friend’s book launch party and a couple of other events in May. There’s a CML Conference on June 8th that I registered for months ago. I am planning to attend as I’m holding my doctor to his words; to feel better in about a week.

Rich earned his MSF at UNR. Bobby attended and I’m NOT canceling my trip to Alex’s 2nd birthday party!

B2N will feel so good!

Thanks for reading!
Mary

the Philadelphia Chromosome by Jessica Wapner

Renewed Appreciation

Reading the Philadelphia Chromosome transformed me into a mini scientist majoring in CML, Chronic Myelogenous Leukemia. I was diagnosed with CML in November of 2003, which required keeping up-to-date on news relating to CML. When I heard about the Philadelphia Chromosome by Jessica Wapner, I was anxious to add it to my shelf of resources.

Reading the book with pencil in hand to highlight new facts as well as valuable previous knowledge, I found myself marking information on every page.

When I was diagnosed my oncologist informed me that if there was ever a good time to get CML, it was now. At that precise moment, I had no idea what he was talking about. He may have elaborated, but in that moment of shock, I didn’t hear much. Wapner’s book has renewed my appreciation of that conversation every time I swallow my oral chemotherapy pill, Gleevec.

I have an entire file cabinet filled with lab results since 2003. My oncologist reviews the findings with me twice a year, but after reading the Philadelphia Chromosome, my understanding of the labs has improved. I have registered for a couple of CML conferences and am confident I will easily grasp new information presented after reading this book.

Years ago I started writing a book about living with CML. I found it too depressing to continue, however, not abandoning the therapeutic effect; I turned it into a blog, which I update once a month. marycrocco.wordpress.com Being helpful to a few readers who have stopped by makes it worthwhile.

Wapner shared a story of a patient who cherished her Gleevec and defended it with her life. I do the same thing, always insisting to sign for it and checking the delivery time is set for the morning. I don’t want my miracle pill losing its potency in the heat of a UPS truck.

Thank you, Jessica Wapner, for taking the time to write this incredible book, the Philadelphia Chromosome. I appreciate the effort required in your research to share with others who suffer with CML, or readers who have an interest in cancer treatments.

Bringing to life the names of medical doctors and institutions involved in the creation of Gleevec was important. I owe my life to Dr. Druker, and others, who dedicated a large portion of their lives creating a targeted medicine to fight chromosome abnormality in cancer cells.

Posted by: Mary Crocco | May 2, 2013

May Madness?!

April CML pic

May 2, 2013

My April Fool’s Day left me confused. All my test results showed there was nothing wrong. As of today, my oncologist shares my confusion.

All I was left to do was return in a month for a follow up. I said I didn’t want an appointment, so we agreed if things got bad I’d call and come in.

The following two weeks I was doing okay. I even got back to the therapy pool for exercise. It felt great to feel normal again.

There was even a day where my hands weren’t cramped, my fingers weren’t cracked, my back didn’t hurt, and my stomach was behaving, so I could actually sit down and write at length. I added 6,500 words to my book! It was the greatest feeling in the world. I’m almost finished writing my first draft.

My son and his family came for a visit the weekend of April 19th. Playing with my twenty-two month old grandson was wonderful as always.

During the following week my stomach started up again. I was suffering the same symptoms as I did earlier in April. Being all the test results showed no cause for this, I decided to see a gastroenterologist, which is what was suggested earlier by my rheumatologist and oncologist. I just didn’t want yet another doctor; I can’t tell you how depressing this is. However, it has to be done, the episodes last for hours and hours. It’s just plain crazy.

My arthritis became worse too, and after waking up not being able to move, I figured maybe I should start taking my pain meds as a preventative measure, just for a couple of days.

My son is graduating from UNR with a MSF on May 17th and I have had tickets for months for this special occasion. I had to tell him I couldn’t go. There is no way I can fly and then participate in the festivities like this; I won’t be a spectacle and/or a problem. I am so disappointed and sad over this. I told him early on so he could prepare to take time off from work to stay home with his son. I was going to stay a few days as I always do when I visit.

Hoping the gastroenterologist visit on May 7th (my birthday) will be successful in providing a diagnosis and treatment, maybe I will be able to attend my son’s special day. My fingers are crossed.

I was invited to a book launching party from a former writing critique group member who just published her book. I had to RSVP no for that too.

My other son planned dinner and a movie for my birthday, I had to say no. Having such an unpredictable problem, going anywhere is impossible. I suggested pizza and a movie home, which is just as perfect for me.

If I didn’t have to eat a full meal with Gleevec, trust me, I wouldn’t eat at all. Then maybe my stomach would behave. Irrational, I know, but it hurts so much after I eat and for so long, it creates thinking extreme ideas.

My eye has been a total mess most of the month. I had a short reprieve from the discomfort, and have had a scheduled appointment set up since my last visit. This is absolutely ridiculous. There must be a diagnosis so it can be treated, it looks horrible and is so sore and uncomfortable. I have a feeling I will be given the prescription that ophthalmologists have avoided giving me because of Gleevec. But we’ve tried everything else.

So once again I have more doctor visits for the month of May. I have to get this stomach problem taken care of; it’s as ridiculous as my eye problem. I postponed my dental visit in April – again, no way do I want to be sitting in a dental chair and have my stomach act up.

After my gastroenterologist visit I’m anxious to see if I get a diagnosis and can be treated so I can ‘see’ my son receive his MSF. And ‘see’ is the right word, after my ophthalmologist visit.

I’m so excited to finish the first draft of my historical novel, and I want to get back to the pool for my arthritis, it’s so much better than taking pills.

April is always a double-edged sword for me since 2001. My oldest son would have been forty-one years old, but instead I visit him in a cemetery. And his brother turned thirty-eight, the day before his brother’s birthday.

Dealing with stress and believing my own diagnosis that it was the damn flu shot in January that is the cause of my stomach problem, I sure hope May is a better month.

Thanks for reading! 

Posted by: Mary Crocco | March 30, 2013

Dreading April Fool’s Day?

April Fools day

March is coming to an end and I’ve mixed feelings about April Fool’s Day. Will my doctor visit to my oncologist on April 1st leave me laughing or crying?

It has been a very hard month. I’ve had stomach problems that have progressed for two months on and off. I kept thinking each episode would be the last and all would be better tomorrow. As of today, March 29th, tomorrow hasn’t arrived yet, in fact the episodes have escalated from an hour to four hours.

Living with CML I’m used to the side effects of Gleevec, after all, in November it will be ten years I’ve been living with Chronic Myeloid Leukemia. But the nausea and stomach pain has increased in intensity and frequency.

An appointment to my rheumatologist on March 18th concluded with me agreeing to call my oncologist for an appointment. The doctor said I shouldn’t be this sick for two months. My scheduled six month visit to my oncologist was for April 15th, so in my mind I figured I could wait. I thought it would go away and I’d feel better. Walking into the Comprehensive Cancer Center is enough to delay a visit.

Gleevec keeps my white blood cells under control so well that I only see my oncologist every six months to review my blood work, which is drawn two weeks before a visit. I dreaded making an additional visit. However, I did call the Center and spoke to my oncologist’s nurse about what was going on and an appointment was set up for the 22nd.

During the week I had an unexpected problem. My rheumatologist weaned me off Cymbalta and my last pills were to be cut in half for four days and that was it for this drug. I was happy to decrease my pills, even if it was only one.

What I didn’t expect was the side effect of doing just that. It was horrible. I’ve never experienced such a reaction. I was lethargic, light-headed, dizzy, and experienced overwhelming sadness. This lasted an entire week, even though I still get a little light headed. I vow never to take that drug again. I don’t care how much my Fibromyalgia acts up.

I’ll share an incident that happened when I ventured out. PBS invited me to a two hour event which included pre-screening a movie followed by a discussion. I had previously RSVP’d but was now conflicted about attending. The main reason I confirmed my attendance earlier was because it seemed beneficial to my research for my historical novel. So, I decided to go, taking every precaution to avoid an incident; not eating, not too much tea, and a lot of rest. By the time I arrived I was already exhausted.

There was a lovely spread offered, including tea, but as always I never ate at an event, this time I avoided the water and tea, which is my beverage of choice all day long. I’m always afraid of my stomach’s reaction, and currently suffering with whatever was wrong with my stomach for these past two months, I didn’t take a chance.

Being the movie was a preview, it was brief, and I looked forward to the discussion because these were women who not only taught Native American studies, but were Native American, and their stories were sure to enrich my research.

Three quarters into the event, I couldn’t sit in the hard chair any longer, and as usual, I was the first to leave. All I missed was the audience Q&A segment, which I never find stimulating. I was so tired when I got home that I slept for twenty hours!

Two days later on the 22nd I walked into the Cancer Center. It’s packed with patients using wheelchairs, walkers, and oxygen tanks, some wearing kerchiefs and wigs; it’s a nightmare to me. I . . . gotta take a break as the tears are falling.

. . . The nightmare is not only that I may be one of those patients one day, but that I am alone. Sure I have two terrific sons, but I don’t drag them into my darkest days, and they rarely read my blog. But not having . . . break.

Not having someone by my side throughout my struggle with CML is difficult. It makes me unbelievably sad to know this is how it will be until I die. It’s hard not to be aware of the cancer patients as they support their husbands and wives while waiting for treatment. Before I was diagnosed (Nov. 03) I enjoyed life. I was a teacher, dated and had fun. With the side effects of my oral chemo drug, Gleevec, I couldn’t work anymore, and can’t do much of anything as my arthritis progresses daily. As far as dating, I’m certain no one wants to start a relationship with an unhealthy person.

My only joy was exercising in the therapy pool, but my stomach problem has kept me from going since the middle of January. I still wonder if all of this is due to getting that damn flu shot on January 13th.

(Deep breaths, loud sigh)

The doctor’s assistant took my vitals in the waiting room and told me the lab would call in a couple of minutes to draw blood. The Center was so busy and they closed in an hour, which is why my vitals were taken in the waiting room. Five minutes passed when the lab called me. Shortly after, I was talking with my oncologist’s intern.

I was asked to elaborate on my symptoms, as she had been briefed by the nurse. Having some lab results and giving me a physical exam, she concluded in her opinion, it wasn’t the leukemia that was the problem. But she couldn’t be sure until all the results were in and certain results took a week or so. This was all familiar to me, as it occurs every six months. I left with stool specimen instructions, which does not occur every six months.

I’m hopeful because of the intern’s comments – the immediate blood work was good and she didn’t think my stomach problems were from the leukemia. Her opinion was some kind of a stomach virus. She had my oncologist check the labs before I left and he ordered the specimen tests. I didn’t see him but he was kept abreast of my visit as the nurse left twice to speak with him. I was grateful to get squeezed in because they had no openings. He wanted to see me April 1st, so that was fine with me; all the results would be in. As I was leaving, I saw my doctor with a woman patient about my age being walked from an exam room and I recognized the look on her face. Been there, done that, ten years ago.

The following Monday I dropped off the specimens. This time I left with 24 hour urine instructions; however, I couldn’t begin immediately because I had a cup of tea, which contained caffeine. I had to wait three days to be caffeine free.

Today, Friday, I dropped off the specimen. I’m feeling apprehensive about receiving results from these tests, so it will be an anxiety filled weekend. Hence, dreading April Fool’s Day.

Hello Mary,

My name is Susan Vento. My husband Bruce was a member of the US House of Representatives—until October 10th, 2000, when everything changed. Bruce died of pleural mesothelioma—a rare disease caused by asbestos exposure that kills 90-95% of those who have it. Not many people know about this terrible disease, which lead me to reach out to you; I noticed that you have an influential cancer blog full of great information. I am hoping you will help me spread awareness about asbestos cancers and help to protect the rights of those who have been affected by mesothelioma and other cancers.

I am spokesperson for a great online resource called the Asbestos Cancer Victims’ Rights Campaign (cancervictimsrights (dot) org) that fights to protect cancer victims and their families. I wrote a blog piece (cancervictimsrights (dot) org/my-story-opposition-to-the-fact-act-susan-vento/) and would love if you could read it, share it and incorporate your thoughts. Your support, and the support of your online community, can make the difference to ensure justice for all cancer victims and their loved ones.

Thank you for joining me in my fight to educate people about such a deadly disease. Our ultimate goal is to help those who have suffered from all forms of cancer in their struggle to seek health and justice.

Best,
Susan


Susan Vento
Activist
Asbestos Cancer Victims’ Rights Campaign
http://cancervictimsrights.org/

Posted by: Mary Crocco | March 3, 2013

Don’t think I’ll be getting a flu shot ever again!

flu-shot

Living with CML
March, 2013

Don’t think I’ll be getting a flu shot ever again!

My last entry was in December. I had a guest blogger for January, which is one of the reasons I didn’t write that month. The other was because both January and February I wasn’t feeling my best at all.

January began with the flu scare. Everyone was being urged to get the flu shot. I had never listened to the medical experts before, but for some reason, this year seemed like it was worse, so I got a flu shot on Jan. 14th. I did call my oncologist first and ask if he recommended I get it. I also asked my primary doctor and both said I should. I was fine for a couple of weeks after the shot, going to the pool for my arthritis therapy and all. But on the third week, things went downhill.

I was extremely nauseous and sick to my stomach every other day. It progressed to every single day, then back to every other day. I’m used to my CML medication, Gleevec, making me nauseous, but this was so much more intense. Believe it or not, I felt terrible and suffered all through February. The last time I felt ill was exactly the last day of February.

I had a sore throat the last week of Jan. so I went to see my doctor. She said it was a good thing I came in as I had a viral infection on the roof of my mouth and a bacterial infection in my throat. SIGH. New meds and I felt much better, in my mouth anyway, as being nauseous and sick lasted throughout Feb.

Don’t think I’ll be getting a flu shot ever again!

I had set up a flight months ago to Reno, to watch my grandson, while my son and daughter-in-law went away for the weekend, on the second week of Feb. I managed to go and was fine most of the time, but did get sick twice. Luckily, it didn’t affect my time with my grandson as it was after his bedtime.

A visit to the eye doctor resulted in only a minimal improvement in my dry eye. The doctor doesn’t want to give me Restasis because I had shingles in my eye a few years ago, and he isn’t sure if Gleevec will interact badly with it. So I’ll continue with the OTC drops until my appointment on March 6th.

So, once again, I couldn’t go to the pool. The last time was Jan. 17th. I hope my stomach calms down long enough so I feel comfortable enough to get back into the pool.

My hand cramps have been more intense these past couple of months too. I ordered a lap pillow to hold my iPad and Kindle because it kills me to hold them myself. I just received it yesterday and it really works great! Typing was also harder than usual. I use the Dragon Program, but I still have to type to edit, but it helps somewhat.

I’ll have blood drawn again and a rheumatologist appointment on March 18th. I’m going to suggest going off a medication the doctor prescribed. I’m so sick of pills.

So, this was my Living with CML for January and February. It sure wasn’t pretty, but it’s the way it is. I still feel lucky and grateful to be alive because of Gleevec, side effects and all. Not to have to have traditional chemo vs. a pill is a plus to me.

Thank you for anyone who reads my blog, I do appreciate it.

Posted by: Mary Crocco | January 25, 2013

Life Lessons After Caring For Someone with Cancer

“Hello, readers of “Living with CML!”  My name is Cameron Von St. James, and our mutual friend Mary has been kind enough to allow me to share some of my family’s cancer story with all of you.  As you’ll read in a moment, my wife was diagnosed with an extremely rare and deadly cancer several years ago.  Since then, we’ve blogged about our experiences in the attempt to help others going through the same struggle.  I came across Mary’s blog while searching through a variety of cancer blogs, and felt that our stories reflected one another in many ways.  I thought that her blog would be a perfect venue to share more of my story with people who might take something away from it.  Mary kindly allowed this, and I couldn’t be more honored to be able to contribute to her blog! Thanks for reading, and I hope you enjoy it!  If you’d like to read more about my wife and and I, you can visit our blog at http://www.mesothelioma.com/blog/

After celebrating my daughter’s birth with my wife, Heather, and looking forward to many more years we’d have of birthday parties and memories to make, we were hit with the unimaginable when my wife was diagnosed with cancer on November 21, 2005. After hearing the words, we went into shock as we were asked by the doctor to make the first of many difficult decisions regarding her care. Although my wife was literally speechless, I had to take control of the situation and agreed to seek help from a doctor in Boston who specialized in treating mesothelioma, the rare and deadly cancer that had its sights set on my wife.

It’s fair to say that caring for my wife during her treatment took over our lives. It was a complete shock to transition from being full-time working parents to having cancer on our minds every minute of the day. I could only work-part time to have the time needed to take my wife to appointments, make travel arrangements, and be her support, all while caring for our daughter; it seemed there was no end in sight. I had moments when I would break down crying on our kitchen floor, fearing I’d end up a widowed, homeless father with not much of a future. However, even in these weak moments, I made sure to never let my wife see my fears.  She needed me to be strong, and that’s exactly what I intended to be.

If there’s anything I learned from caring for my family during my wife’s mesothelioma surgery, radiation, and chemotherapy, it was to get help when it was offered. Whether it was being given financial assistance from a relative or emotional support from a friend, it was one less thing I had to worry about. I learned to give myself bad days when I needed them, and to live each day with hope. It was vital that I use every tool and resource I was given if I wanted to make it through the difficult time. This experience taught me that time is precious, and allows me to look back at a stressful time with new life experiences and be thankful for a wife who survived cancer.  Heather defied the odds and beat mesothelioma, and is happy and healthy to this day.

 

Several years after the most difficult season of our lives, I found myself on a stage giving a speech about my wife’s cancer as I was graduating with high honors after studying Information Technology. I was telling the audience about one of the most difficult ordeals of my life, and how it taught me life lessons about using my stubbornness to an advantage and finding strength in believing in myself.  I told them that each of us can accomplish unbelievable things, as long as we never give up hope and never stop fighting.  Heather and Lily cheered me on from the audience, and that was the greatest reward of all.

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