Jeff's Profile Page

Biography

Hi,

My story began on February 22nd, at least the part where I finally find out what is wrong with me and get treatment.

I quit smoking cigarettes in 2002 when I started college and had problems breathing for a very long time after that. At first I thought it mostly had to do with the cigarettes having caused permanent damage. Or due to the weight I gained after quitting. I was working 2 part time jobs at the time and didn’t have any insurance so I waited until 2006 when I got hired on to my career with benefits to finally start doing some digging. Unfortunately not always with good insurance comes great help as the doctor I chose at the time gave me alot in regards of allergy pills and inhalers, but no real tests. Even one trip to a pulmonalogist at the time showed up as good even though I had a very hard time going upstairs and catching my breath. That’s enough blame though as that does not help anything. I could just as well take it out on myself.

So coming back to Febraury 22nd, 2011. I got to the point where I was starting to have a harder time breathing even at rest and was wheezing all the time from what I thought was my throat and went back to see the same doctor I have been. She previously prescribed Advair about a year back as the normal inhalers I told her were not helping. No chest x-ray, more prescriptions (sorry, moving on). What she thought at this time was that the Advair caused a fungal infection in my throat which caused the wheezing. After 14 days the pills were finishing up and no change. I gave her a call and she referred me to an Ear Nose and Throat doctor.

Now, on March 9th begins the journey to the truth. I met with the ENT who stuck a scope through my nose and down my throat, but was not able to find anything wrong. From his perspective and specialty everything was fine. However, he heard me wheezing pretty bad and was very nice to say that he believed me and that it was greatly troubling me and ordered a CT Scan. On March 14th I had the CT scan and started the journey of referrals.

The ENT said there were some abnormalities in the CT scan and referred me directly past my regular family doctor to a different Pulmonlogist who suggested 2 different procedures. A less evasive one called a bronchostomy under twilight and a surgical procedure called a mediastinoscopy under general anestesia both to collect samples from the lymphnodes in my chest. The bronchostomy was recommended and occured on 3/18 as it was less evasive and risky as the mediastinoscopy required cutting my neck and risking causing damage to my heart because of the location the instruments would go. Unfortunately the bronchostomy gets alot smaller sample and has the risk of not getting enough to be of use. This was the case in my situation which really got me upset as I was constantly coughing and felt worse for nothing I was thinking. I was once again scheduled for a procedure, but this time for surgery.3/28 I went in for the Mediastinoscopy and was once again coughing up stuff for days and always very thirsty.Of course the “good” side was this procedure was successful giving them the diagnosis of the large B cell Lymphoma.

I was then scheduled to meet an Oncologist on 3/30. The Oncologist was very nice and answered so many questions as she explained exactly what it was I had. She told me that there is still a good chance I can reach remission even though what stage it was in which I am not sure how to process, but take as a positive.I admit I was a nervous reck at this point. It felt that these appointments and procedures would never end and I felt like I was going to lose my job because of how many times I needed to leave (In between the procedures I mentioned were extra blood tests and appointments just to meet the doctor’s doing things) and that when I was at work, this was all I could think of. The oncologist scheduled a PET scan and a bone marrow biopsy for April 4th which I asked to be punished with on the same day. The PET scan was actually pretty interesting and scary at the same time as yet again I had to have another needle and they had a hard time finding a good vein. The bone marrow biopsy was done by the oncologist and went better than I thought. The odd pressure involved and slight pain at certain moments was tolerable considering.

Then on April 6th I was able to see my PET Scan results and was told that I had stage IV. I wasn’t sure what to think, but I was also given news that my bone marrow came back negative. I took the bone marrow as a positive to leave with, although, I was never given any reason to think this makes a great difference. She also explained that I would need to have a port put in to help with administering the chemo. This creeped me out as it was yet again another procedure which meant dragging my family again through another ordeal. This was scheduled for April 11th along with a MUGA scan of my heart because of one of the chemo drugs can cause heart failure and we needed to make sure my heart would be strong enough for it. I was asked when to set these things up along with when I wanted to start chemo. I just wanted it to start immediately so the 11th were for the port and MUGA and right away on the 12th was my first chemo.

For my 1st day of Chemo, I was very suprised at how relaxed it was and I was very prepared with plenty to do. I brought my laptop and books (paper and Cd) that I got from my family. One was the Shift from Dr. Wayne Dwyer which is both humorous and inspirational as he himself is living with cancer and has all positive things to say about living life with it. Because of that one drug being rough on the heart I left home with a pump that slowly gave me it over the next 3 days.

I have to say that after all I have went through that I am feeling thankful and overall positive about things. Everything that was done from the ENT to the oncologist happened for a reason and it was all necessary (maybe could have saved time going straight to the mediastinoscopy instead of the bronchostomy), but its done and we move on. I am happy now that I have the port as it is a heck of alot better than being constantly stuck in the arm, especially with my veins.

Since my first treatment I had a few episodes of nausea, but was able to catch it in time and take the pills to allow me to eat and feel good again. I am now already relieved of my B symptoms even just a week before my next session. Before Easter, I had a little bit of a scare as I had to see the doctor about sores on my tongue and pressure in my arms. I was tested to see if my white blood count was good and an ultrasound and DDime to check if I had a blood clot. All actually turned out ok, and following my next procedures I will be given an injection of Neulasta to boost up the count and prevent the sores and possibly other symptoms. For that time, I was also given a mouth rinse for the tongue sores. Over Easter weekend I used the mouth rinse which makes your whole mouth numb sort of like a day at the dentist. It was pretty nasty, but I was happy to receive it in time for Easter weekend to be able to eat all the good things and be good company with my family.

I have to mention that I feel very lucky for all the support I have had both at work and with my family.

Jeff

Cancer Symptoms

Night Sweats
Wheezing from throat
Lack of energy

Surgery Description, Dates & Side Effects

Mediastinoscopy
Port Placement

Chemotherapy Description, Dates & Side Effects

R-CHOP 21
Mouth Sores
Steroid Withdrawl

Fundraising Description

http://pages.lightthenight.org/wi/SEWI11/JMarek

Comments:

P.S. What was mouth rinse you had? I have dry mouth and throat so bad….and, from what I’ve been told after radiation I will lose my right saliva gland so…I’ll really have dry mouth. Darn it. It’s awful. Taste buds are pretty much gone…I have all the Biotene products that I use faithfully…but, always interested in other products that will help. Thanks…so much.

Posted on January 22, 2012 at 9:25:43 PM by Dawna (dj)

Jeff: Did you have to have radiation? If so, how was it? Where did they give it to you? Go to my profile it will explain what I have. I have my last R-Chop Chemo on Jan. 26th for 7hrs. YEAH. Then the “shot from hell” (Neulasta) the next day and my PICC removed from my heart after the shot. I’m excited. But, scare about radiation as my cancer was right behind my right ear lobe. Very close to inner ear. How are you doing now?

Posted on January 22, 2012 at 9:22:45 PM by Dawna (dj)

Thanks for sharing your story! I am so glad you have the support you have. It means everything!
Hang in there!

Posted on November 26, 2011 at 4:49:19 PM by Private User

Posted on October 31, 2011 at 5:37:02 PM by Levi

How did you endure such continual procedures, diagnosis-es and opinions, it’s incredible. I’m new here on behalf of my brother fighting his own non-h lymphoma as we’ve all been tested as stem cell donors and not a match among us. So he fights on while I stay up nights, but find a perfect place to read and learn from others – thank you for sharing your story, I’m continually amazed at how everyone here has coped using such creative, unique methods.

Posted on October 29, 2011 at 12:41:53 AM by Cathrin

Thanks…so far so good:)

Posted on August 31, 2011 at 7:44:15 PM by Doreen