Category Archives: My Fight

Imbruvica’s Long Term Side Effects Starting to Surface

So I’ve decided that I’m a bad blog writer and that I’ve let entirely too much time pass since my last update.  Up until a month ago there wasn’t much to post.  It seems that the last few weeks however, have been nothing but doctor’s appointments and setbacks.

Let me elaborate..

bladderUp until the end of 2014, I was doing really well.  I had turned 40, gotten another promotion, was continuing to kick ass in school and was looking forward to traveling with Shelby.  The only issue was that my menstrual cycle was off.  I had gone 2 months without it, then have it for two weeks, followed by spotting for a week and then it started again..and hadn’t stopped.  I was also starting to experience some incontinence.  Not to the point that I couldn’t control an urge to go, but that I would just leak.  It was very embarrassing.


I went to my new oncologist (Dr. Zibelli had left the office that I attended) in early January and told him about my newest symptoms.  He did a thorough exam and did not see any new growth in my lymph nodes (YAY!).  His suggestion was that I see my gynecologist regarding the other two issues and not to see him again until the end of February.  Shelby and I walked right to my GYN and made an appointment for the end of that week.

Fun fact: There is no need for a PET scan right now because they can gauge the progression by feeling the lymph nodes throughout my body.

At Dr. Robinson’s office (my GYN), she suggested that I get an ultrasound of my uterus and have an endometrial biopsy, and to also make an appointment of an urologist/gynecologist that could do testing on my

Grandma and I on her 90th birthday. 11/2014

Grandma and I on her 90th birthday. 11/2014

bladder.  She suspects that the Imbruvica is putting my body into somewhat of a medical menopause.

Less than two weeks later I ended up in the emergency room at Nazareth Hospital for excessive bleeding.  For three days prior, I had gotten heavier but on that particular Tuesday, I could not stop.  At the advice of both my oncologist and gynecologist, I went to the ER in fear that I was losing too much blood.  Somehow, my blood work was in the lower spec but within range.  While there, I had the ultrasound done which showed that I had a significant amount of fibroid perimenopausetumors.  I was told that this could have been a reason why I had more bleeding.

Fun fact: I decided to postpone my appointment with the URO/GYN until I had taken care of the bleeding issue.

The next day, Dr. Robinson performed the endometrial biopsy (ouch) and prescribed me ten days of Provera.  The hormones were to stop the bleeding within two days and then it would start again about two weeks later.

That didn’t work.

The Provera slowed down the bleeding but it kicked right back in as soon as I stopped.  I went right back in to visit Dr. Robinson who advised me on having a DNC.  The next week, she also suggested having a hysteroscopy and an ablation.

(For those of you who are uneducated in the procedures of the female anatomy, a DNC is a scraping of the endometrial lining of the uterus, a hysteroscopy involves filling the uterus with water then using a camera to inspect it, and an ablation is the burning of the uterine wall to destroy the endometrium and prevent the tissue from growing.)

Fun fact: The endometrial biopsy came back negative.  :-)

This past Tuesday (2/24/15), I had the procedure at Nazareth hospital.  Shelby had to have me there at 6:30AM for an 8AM surgical time.  I was put under anesthesia and woke up about an hour later and in pain.  From what Shelby tells me, Dr.  Robinson had shown her pictures of my uterus before and after.  Apparently before, there were tons of polyps that had to be removed.  After, my uterus looked like a fireplace after it had burned out.  No wonder I had such bad cramping after!

This leads me to today, three days after my procedure.  I’ve been home since Tuesday and not allowed to lift anything, exercise or be overly active.  My parents visited me on

Shelby and I in NYC.

Shelby and I in NYC.

Thursday and Shelby has taken very good care of me.  I’ll be able to return to work on Monday and I followup with Dr. Robinson in one week.  I’ll also be having an appointment with my new oncologist, Dr. Bhatia on Tuesday. Both Dr. Bhatia and Dr. Robinson believe that the pros of taking my chemotherapy, Imbruvica, outweigh the cons.  Therefore, I am continuing to take two pills daily.  I’ve also begun to take OTC iron supplements again to combat Restless Leg Syndrome. It seems that losing all the blood has made the RLS worse.  The only thing that seem to help is the iron.

Other than the medical setbacks, I am doing really well.  I was promoted to Continuous Improvement Manager at my company and love going to work everyday.  I continue to take classes at Thomas Edison State College.  And just this past week, Shelby and I booked a trip to New Orleans for her birthday.  If only my body would stop acting up, everything would be great!

Thank you everyone for your constant support and well wishes.  I am motivated by all of your encouragement.  I do apologize for not posting lately.  I will be sure to keep everyone updated more often.

Love you all!

Jennifer “Fitz”

Category: My Fight

Cancer Boxer – Just Another Day In The Ring.

Hello to my faithful family & friends!  I guess as they say, no news is good news.  However, for those of you who get your information from my blog, I’m sorry to keep you out of the loop!  I’ll have to circle back around to the day after my last post.

I was finally released from Thomas Jefferson University Hospital one week after I was

My little cousin, Brian.  He just makes smile.

My little cousin, Brian. He just makes smile.

admitted.  The discharge papers listed Cellulitis as my admission diagnosis but upon further questioning, they still have NO CLUE what the hell was wrong with me!

The day after being discharged, I saw Dr. Zibelli in her office.  She was upset because she thought that I was to be released 2 days prior than I actually was.  When we expressed our frustration over the lack of information sharing between doctors, she validated our feelings and agreed that there was little conferring between everybody.  It was also her opinion that the original blood samples taken in the emergency room were somehow contaminated (apparently you should never draw blood cultures from a port).  Unfortunately, there is no way to tell.  As I left the office, she told me to follow up with a suggested rheumatologist if the pain & swelling didn’t go down with the antibiotic.  I was also to begin the Imbruvica again, only at a reduced dosage.

It took some haggling, but we won the fight for at home antibiotics.  Later that Tuesday, I had an already scheduled IgG infusion.  Since the nurse had to access my port anyway, she was able to teach Shelby how to administer the drugs into me.  As always, Shelby was quick to learn and was my nurse for the following week.

After the week of antibiotics, my foot still had not healed so we did see a

Aunt Ella and I at Madame Tussauds Wax Museum, NYC.

Aunt Ella and I at Madame Tussauds Wax Museum, NYC.

rheumatologist.   By this point, that small pain in my finger had swollen and looked deformed.  Dr. Johnson took plenty of blood, gave me a thorough exam and read my MRI report but still seemed stumped.  She also told me to continue to take the Ibuprofin for pain and inflammation – it was the only thing that worked – and follow up with her in two weeks.

I’m sure you can guess how the blood work turned out.

Inconclusive. On a positive note, I don’t have rheumatoid arthritis, the gout or lymes disease as many people began to suspect.  The bad news is that there is still no diagnosis.  Giving an educated guess, Dr. Johnson believes that I have some sort of reactive arthritis from whatever germ, bacterium or ailment flowed through my body.  As of today, I have taken 9 days of steroids, with 3 more to go.  She hopes that the Prednisone will knocked whatever the hell it is out of me.

I have also seen Dr. Zibelli again.  Her opinion of what happened to me was partly from the Imbruvica but cannot say for certain if I did or did not have an infection.  She also believes the foot was some rheumatological ailment.

So here I sit, over one month later and am still plagued by pain in my fourth toe.  The swelling in the top part of my foot is almost completely gone, but the toe is still discolored and sore.  I try not to limp anymore but sometimes it just hurts.

This has been very frustrating mentally.  I am back at work and attempting to be active again but am still somewhat sidelined by my condition.  I just wish I could have an official diagnosis.  Whenever anyone asks what was wrong with me and why I was hospitalized, I can only give them one answer….

Nobody knows.

The bottom of the falls at Rickets Glen.

The bottom of the falls at Rickets Glen.

Shelby at Rickets Glen

Shelby at Rickets Glen

On a personal note, I received a promotion at work just before I got sick.  I am now

the  Continuous Improvement Manager at Zentis in Philadelphia.  My new role is to oversee projects in the plant, food safety and the health & safety of our employees.  Also, Shelby and I were able to enjoy a couple of days off before everything happened.  We went hiking at Ricketts Glen and spent a couple of days in NYC.  We were hoping to take a fall vacation but have had to put that on hold since I just missed 2 1/2 weeks of work.  Someday I’ll get to take her somewhere tropical! She definitely deserves it.

Category: My Fight

My Stay At Thomas Jefferson University Hospital

View from my room.

View from my room.

As I’m sure most of you already know, I have been hospitalized at Thomas Jefferson University Hospital in Philadelphia since Tuesday, 8/5/14.  I’d love to tell you my exact diagnosis but I don’t believe anyone knows for sure exactly what it is!  I do know that there is an infection in my foot that has caused quite a stir, but the cause and reason behind my other ailments is still a mystery.  I’ll try to give just the facts to keep you all up-to-date without becoming too bored.

I woke up two weeks ago on a Monday to a sore throat and indigestion.  Two days later I went to an Urgent Care to be tested for strep throat because I had noticed a white spot in my mouth.  The rapid strep throat came back negative, but I was put on an antibiotic and sent on my way.  Also that day, I began to feel a pain in my left foot.  The pain was only in the tip of my toe but it was noticeable.  By that Friday, my mouth was full of sores and I was walking with a limp.  I could only eat soup and yogurt and drink just water.  The mouth pain was pretty severe. My eyes were also bloodshot and I had a pain in my left shoulder.

yep, I really did just post a pic of my swollen foot.  Monday, 8/4/14.

yep, I really did just post a pic of my swollen foot. Monday, 8/4/14.

Suspecting my Imbruvica to be the culprit, I spoke with the nurse at my oncologist’s office and she asked me to come in that same day.  My body temperature was around 99.5 degrees.  I was instructed to stop the chemo, begin a mouth rinse for the pain and go to the ER if my temperature rose above 101.4.  Two days later (Sunday), I was in the emergency room at Nazareth Hospital when I awoke with a temperature over 101.

I was triaged almost immediately.  The nurse accessed my port and took 9 vials of blood.  I had a chest x-ray and an ultrasound of my leg to rule out a blood clot in my foot.  When the results came back negative, I was sent home almost 3 hours after I arrived.  I remember being confused about why they didn’t admit me.  I had a fever, red eyes, visible mouth sores, a swollen, painful foot and an irritated shoulder.  Both Shelby and I asked that the ER doctor confer with an oncologist before we left, but he said there wasn’t one available.

Having an oncologist appointment 2 days later, Shelby and I were hoping to talk about when I could begin taking the Imbruvica again.  Instead, Dr Zibelli saw the lab results from the ER and instructed I be admitted into Jefferson that day.  She even called in and set up a bed for me so that I could avoid the ER again.  According to the Nazareth reports, my blood cultures showed a bacterial infection in my blood.  I never should have been discharged from the emergency room.

The Atrium (view from my room)

The Atrium (view from my room)

Being admitted was super easy and I met with a team of doctors and students almost immediately.  Again, the concern was this infection in my foot.  They had a hard time accessing an IV line because I was so dehydrated from not drinking enough with the mouth sores, and were afraid to access my port just in case it was infected.  The third nurse to attempt the IV was finally able to find a vein in my wrist (ouch!).  They took major blood samples, set up a bag of saline, began giving me two antibiotics and gave me Oxycontin for the pain.

Can you guess what happened next?

I threw up violently, had diarrhea and felt major abdominal pain.  It wasn’t long after that I gave myself a full blown panic attack (I’ve never had one before but was told that’s what it was).  It took about two hours of focused breathing and morphine to settle down.  No more oxy for me! I had to apologize to Shelby afterwards for yelling at her during the panic attack.

I finally had an MRI on Thursday and saw the team from Infectious Disease (ID) on Friday.  This is where the story and situation gets somewhat confusing.  Up until this point, they were relying on the blood cultures from Nazareth because they take a few days to incubate and the results from Jefferson had not returned.  The ID doctor was curious because the infection was in my 4th toe and surrounding area. There had been no trauma to the foot nor was I punctured, stung or injected anywhere near that area.  How could I have a blood infection in the toe?  He called the lab at Nazareth, asked them a few questions, determined that their sample must have been contaminated, that my foot was not infected, and was willing to send me home the next day.  After he conferred with Dr. Zibelli, she told me that I would be seeing a rheumatologist the next day (Saturday) and would go home after.

During their rounds on Saturday, I saw the department resident and an oncologist that specializes in CLL.  He took one look at my foot, determined that it was infected, that I could NOT go home, that I would need more antibiotics in the hospital and as an outpatient.  He explained that because I have cancer, I need to be treated differently than if I was not sick.

Fun Fact #1:  The #1 killer for CLL patients is infection. (yikes)

Fun Fact #2:  Rheumatologists don’t work weekends.

So now, here I am – almost 2 weeks after the first symptom began!  The mouth sores

View of Center City from the hospital breezeway.

View of Center City from the hospital breezeway.

are gone and my eyes are almost back to normal. My foot is still swollen and sore, and my shoulder pain continues to plague me.  Also, my arms are lined with bruises from all of the blood draws and my stomach is scarred purple from injections. Hopefully, I will be discharged tomorrow and can receive at-home antibiotics.  I am now receiving a different antibiotic that is known to be useful in joint infections (if that is what I actually have).  The drug is easily tolerated and only takes 30 minutes to infuse.  I may have to fight to get the infusion either at home or close to home but I do not want to have to drive to Center City Philadelphia daily.  Eventually, I would like to get back to work!

Besides the confusion with my diagnosis, the stay here at TJUH has been as good as hospital stays go.  The nurses have been incredible!  Every one I have dealt with have been compassionate, hardworking and kind.  I am very grateful towards them and want to send my gratitude to all the nurses that read this blog.  You are the unsung heroes of the medical world.  Thank you, thank you, THANK YOU!

Fun Fact #3:  The food was actually pretty good!

Fun Fact #4:  The nurses monitor how much you urinate (you have to pee in a ‘hat’)

Fun Fact # 4 1/2:  I pee, on average, 16oz at a time.

Fun Fact # 4 3/4:  That number can double overnight.family and friends

I’d like to send a particular thank you to Shelby for being with me through this whole painful and confusing process.  She has been here daily with me, talked to my doctors and had to deal with the stressors of having a loved one in the hospital.  Also thank you to my big ‘brudder’ Chris, my ‘seester’-in-law Tracey, Shelby’s brother Michael, my cousin Shawn, Aunt Noreen and my parents for your visits.  They made otherwise boring days much more tolerable.

Also a big thank you for all of your Facebook well wishes, prayers and texts.  I’ve read every Facebook post even if I did not respond.  In case you are not aware, they all help.  Every comment and kind word helps with the doldrums of being hospitalized and the depression of sickness. So thank you to all of my friends, family and readers.  I love you all.

 

 

 

 

 

 

 

 

Category: My Fight

Rockin’ Imbruvica!

This past Tuesday, July 1, 2014, I visited my oncologist for a scheduled exam.  I had gotten blood drawn last week and was seemeatcapemayzooing her for a follow up visit – It has been 6 weeks since I started Imbruvica, and 3 weeks since my last appointment.

Since my appointment was at 11:30AM, I worked from about 5:30AM till 11:00 before leaving for the hospital.  I arrived early enough that I was able to stop in and visit the nurses in the infusion room, Peggy and awesome nurse Nicole (freshly tanned from her honeymoon in Turks & Caicos), and the oncology navigator Terry.  It was a short visit but I still really enjoyed seeing them.

The Imbruvica must be working because my swelling has gone down enough that neither me nor my doctor can feel my lymph nodes! My blood work was also fantastic!  I couldn’t believe how good it was. Everything in my CBC and CMP were all in range.  I can’t recall the last time my blood work was that steady.   Good thing, too since Shelby wacancerquotes just sick for almost 2 weeks and I didn’t catch a thing!

The only downside was that my immunoglobulin G levels were low. This can be expected since I’ve been getting chemo regularly for months.  I’m going to have to begin IgG infusions again monthly for the next year to try and  get the levels up.

I guess that’s it for now!  I’ll be starting the infusions in 2 weeks (pending insurance pre-certification of course) and I don’t have to see Dr. Zibelli for another 6 weeks.  After I see her again, I’ll get sent for another PET scan.

Thank you for the ongoing support and affection.  I love you!

What is IgG?   http://m.hopkinsmedicine.org/healthlibrary/conditions/allergy_and_asthma/igg_deficiencies_134,109/

Category: My Fight

Imbruvica For My CLL – The First 30 Days

Champions quoteHello Everybody!

As I have just started my 2nd 30 day supply of Imbruvica, I thought I’d give a quick update on my progress!

Today I can say that I am doing well but the first week or so was pretty rough.  My most frequent side effects are stomach problems, fatigue, nausea and abdominal cramping. Shelby says that my stamina is not what it once was and that I fall asleep much easier than normal (which is normally on the couch while we are watching TV at night).  I would say that all of these effects are manageable and that I am still working full time while continuing to take classes toward my BS in Organizational Leadership.

My next appointment with Dr. Zibelli is next Tuesday, July 1, 2014.  I’ll be getting blood drawn later this week to check my CBC’s, CMP’s and my IgG levels.  If my IgG levels are low, I may be receiving those monthly ‘immune boost’ infusions again.  Personally, I cannot feel anymore lymph swelling in my neck – always a good sign!

I guess that is it for today!  I’ll be sure to let everyone know how my doctor’s visit goes next week.  Fingers crossed!

Category: My Fight

Starting Imbruvica for CLL

I finally started the latest and greatest medicine for my cancer, CLL – Imbruvica (aka Ibrutinib.  The regimen is to take three pills once daily with a full glass of wimbruvicalogoater.  I’m also instructed to drink extra fluids and take on a regular schedule.  As of today, there is no set amount of time that I’ll be on this – but my script so far is for 6 months.

According to the paperwork that came with the medicine, the biggest side effects are diarrhea, fatigue, headache, loss of appetite and a host of others.  Long term, I run the risk of experiencing low blood counts, excessive bleeding and kidney problems. My chance of also developing skin cancer also rises so I have to stay out of the sun, stay covered and wear an SPF.  Doesn’t my doctor realize it’s summer, dammit!

Now that I have begun, I’ll be getting my blood drawn weekly to monitor my blood counts and organ functions.  I’ll also be getting evaluated in two weeks by my oncologist.  There is no need for another PET scan yet – especially since I have visible effects of the CLL.  Once my lymph nodes go back down, I’ll receive a scan to monitor the activity in my body.

As of today, I’m on Day 5 of Imbruvica and am already having some symptoms.  On Friday (my first day), I experienced terrible fatigue after only a couple of hours.  I even came home from work after a half day and slept almost 6 hours.  After I woke up, I was too tired to go out and was back asleep by 11PM for another 12 hours.10352406_626180524124546_4125485429222510689_n

I also developed some lower right abdomen pain on the first day that has plagued me daily since.  I’m hoping the pain is ovarian since I just started my cycle – but it feels almost like I’ve burnt my side.

The stomach issues have also arisen! My stomach has been churning since Saturday afternoon and have been very uncomfortable.  I haven’t ventured very far from the house these past few days.

As I write this, I have a call into my doctor about upsetstomachboth the abdominal pain and upset stomach.  I would like to be able to take something for it but don’t want to until I get the go-ahead from her.  If possible, I’d like to return to work but will not if I’ll be spending half of the time in the bathroom.

I guess that’s it for now.  I’ll update daily on Cancerboxer’s Facebook page and Twitter feed.  Thank you everybody for your continued support.

 

You can get more information at www.imbruvica.com.

Category: My Fight

Round 10, Cancer and chemo TKO

Chemo, Round 10.

Ding, Ding.

I was TKO’d before the round even began.

I’ll start from the beginning.

me with Sophia

Bryan

Baby Bryan

Before I went home for Mother’s Day on Saturday, I felt another lymph node on the left side of my neck.  Shelby felt it, too and we decided that I would bring this up to my doctor at my upcoming appointment.  That Tuesday, I went to the infusion room, had my port accessed and blood drawn by awesome nurse Nicole and headed up to see Dr. Zibelli.  The first thing I told her (besides the formalities, of course) was about the swelling.  As soon as she touched my neck, she felt the growth and immediately stopped the chemo.  She told me that my body has developed a resistance to Ofatumumab so it was no longer working.

The doctor then suggested Imbruvica which is the new chemo pill for CLL.  It was just approved by the FDA this year and is having success in other patients.  I’ll be taking 3 pills once a day.  The major, most common side effects seem to be nausea, low blood counts and excessive bleeding.  There is also a risk of kidney damage among others.  Once I begin this drug, I’ll be getting my blood drawn weekly to monitor my body and hope it is not doing more damage than good.

shawn

Shawn

Now, I’m just waiting for the proper approvals and red tape to be cleared.  My understanding is that this drug is very expensive and it’s not something I can get at my local pharmacy.  There is a company working with my insurance company and the supplier to keep the cost to me limited.  As of now, I’m still waiting on the supplier to see just how much my co-pay will be.

Personally, I feel very disappointed and frustrated.  Just as I am about to move forward, I have to take a step back.  There are many opportunities at work coming up that I do not want to miss.  Shelby and I have also been discussing taking a real vacation (abroad maybe) but again, we have to put our plans on hold…at least until we know what this new drug is going to do to me.

shelbyandsophia

Emma & Shelby

For now, Shelby and I continue to move together and try to stay positive for each other.  We had the girls last night (Emma and Sophia) and I got to see my boys last weekend (Shawn and Bryan).  And hopefully, the weather will dry out so we can get out of the house this weekend.

People continue to amaze with their kindness and affection.  Not only are my friends, family and readers sending constant love, I’m receiving support from total strangers.  Thank you to everybody who continue to send some love, prayers and energy.  I love you.

 

 

Category: My Fight, Uncategorized

My Fight, Round 9

meinCapeMay

Round 9.

Ding, Ding.

Before I begin, I must apologize for not getting to this sooner.  The class that I am currently taking gave me an extensive amount of work the past two weeks including a mid-term, therefore my focus was on school.

On April 15, 2014, I had my 9th Round of Ofatumumab.

Upon arrival to the infusion room, awesome nurse Nicole accessed my port and drew some blood.  I then headed up to see my doctor.  I seems that I have a stubborn lymph node that does not want to go down in swelling.  I can feel it in my neck as did the doctor.  She said to continue my monthly treatments and to follow up chemo with another PET Scan.  If the scan shows any activity, I may begin the new chemotherapy pill Ibrutinib that was just FDA approved and is now available for CLL patients.  I guess we’ll just have to wait and see. My last Ofatumumab treatment is in July.

When returning to the Infusion Room, I had my vitals checked and began chemo.  I tried to study for my midterm but was succumbed to a Benadryl coma shortly after receiving the pill.  And even after I wake up, I’m pretty foggy and tired.  There is no studying or making any decisions.  All I want to do is lay down, eat and occasionally pee.

I don’t normally come out of the Benadryl fog until later in the evening.  Most people are winding down for the night but that is when the steroid kicks in for me.  I get a lot of studying done when I’m up all night.  In fear of waking Shelby, I don’t turn on the TV so I just make my way downstairs and play on the computer or read.  I think I finally fell asleep around 5AM.

My normal day after chemo was complete with laundry being done, grocery shopping and cleaning.  I have so much energy, I can’t sit down.  It was not as hard to focus as when I was getting weekly treatments but I am still somewhat scatterbrained.  I even took my midterm online (they now offer online proctoring.  Isn’t that incredible?!).

The timing of my treatment and Easter weekend worked out this time.  Because my work was closed on Good Friday, Shelby and I were able to get away for her birthday on April 18 to Cape May.  Neither of us had ever been there.  It’s a really cute town but being at the beach in April, it was pretty chilly! We made the best out of it (as we always do) and both enjoyed our getaway.  We needed a little escape…even if it was only for a couple of days.

Now, two weeks later, everything is normal and we are living life.  This past Monday Cher ticket(April 28) we saw Cyndi Lauper and Cher in concert at the Wells Fargo Center in Philadelphia.  They were both incredible, sang live and had crazy energy!  We both loved it!  We are also working everyday and I continue to love my job.  They have been nothing but supportive towards me and I am so thankful for that.

I am also eternally grateful to all of my family, friends and supporters who continue to show their love and encouragement as we stand in the ring.  Hearing your cheers and love during the fight strengthens me, and I will continue to battle until I knock this damn thing out!

Category: My Fight

Round 8 – last of the weekly treatments!

Ofotumumab bagRound 8, Ding Ding!

Tuesday, March 18th was the last of my weekly treatments of Ofotumumab.  I do not need treatment for another 4 weeks (April 15th).

I was able to work for a few hours before I was at the hospital by 10:30 AM.  As always, awesome nurse Nicole had my drugs ordered so I was hooked up, had my premeds and was started the chemo drug by 11AM.  Talk about efficient…

I slept for about 2 1/2 hours during the treatment.  It’s funny how the Benadryl hits me.  One minute I’m reading all of the supportive Facebook comments on my computer and then the wave of fatigue hits!  In an instant, my eyes start to close and I can hear the buzzing in my ears. When this happens, it’s time to shut down the computer, get tucked in with my blanket, recline, and let the potent effects of the antihistamine guide me to sleep.

Between the water I drink during the day and the amount of fluids I’m given during treatment, it’s a race to the bathroom when I start to wake up.  I’m sure it’s comical to watch me escape the blanket’s web, unhook the IV stand from the electrical outlet and run to the bathroom in a fury.

Since everything went well, I was able to leave around 3:00.  I was still somewhat groggy but feeling well.  Shelby and I went for a quick bite to eat (I wanted a post St Patrick’s Day Reuben) and I later went to the monthly support group hosted by Nazareth Hospital.   This has been the second time I have gone and really enjoy it.  Terry Cannon, the Oncology Navigator is the facilitator but the group is very informal.  We all have a chance to speak and ask questions and oftentimes the subject drifts from living with cancer.  It’s a good community of people with shared experiences that can relate to the emotional traumas of dealing with the disease.  And somebody always seems to have it worse than you do!

I fell asleep around 6AM the next morning only to be awoken at 10AM by my running RLS legs (I forgot to take the iron the night before).  I’ve been trying to make the overnight hours productive while being quiet. I do schoolwork, computer research, plays computer games or read my book.  Sometimes I have difficulty focusing so I just do whatever my head permits.

While sleeping at treatment, I missed a call from UPenn. It was an automatic confirmation message reminding me of my appointment on Friday.  The funny thing is I never made the appointment! When I got home, I called them to make sure this was correct and sure enough, I have my first appointment about the immunotherapy trial this week!  And I’m either really forgetful, or the scheduler made a mistake but I have NO RECOLLECTION of making this appointment! Let’s blame her for the sake of argument…  :)  Both Shelby and I both have to take off Friday for this – thank goodness we both have understanding bosses!

Well, I guess that’s enough for now.  I’ll be sure to keep everyone up to date on how my appointment at UPenn goes.  Wish me luck!

Love you all!

Ding, Ding.

 

Category: My Fight

My Fight, Round 7 – continued RLS

zibelliwaitingroominfustionroom

Round 7

Ding, Ding

Tuesday was my 7th weekly treatment of Ofotumumab.  Only one more to go until I get a little break.  It.can.not.come.soon.enough!

I’m sure I’m sounding redundant but the Restless Leg has been awful!  It doesn’t start until I try to fall asleep and keeps me up most of the night.  I’ve tried pillows, heating pads, a sedative prescribed from my doctor, massages, even something suggested by a pharmacist but nothing has worked.  When I saw my oncologist yesterday, she suggested taking an iron supplement even though my iron levels are in range.  She had read that iron has worked in patients so she said to give it a try.  I took one supplement last night and it seemed to help.  I still didn’t fall asleep until almost 6AM but it wasn’t because my legs were running.

Because I had not been sleeping well, I fell asleep almost as soon as I ingested the Benadryl and stayed asleep until a half hour before treatment was over (minus a bathroom break – I get a LOT of fluids).  Shelby even came to visit me and left 5 minutes later because she knew I needed some rest (she’s so good to me).  Those three hours were really crucial.

According to my vitals and tests, my blood pressure and blood counts are great.  I did gain 1 1/2 pounds from two weeks ago, but I’m sure that will come off as soon as I can get back to work full time and the weather warms up a little.  Also, once I’m off the steroids, my eating habits should resume to normal.  I’m trying to eat well but have little self control on the day’s of treatment. If you are in my way and I am hungry, I will take you down!

As always, thanks for the love!

Ding, Ding!

 

Category: My Fight
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