Eclectra
Eclectra
Survivor: Non-Hodgkin's Lymphoma (Stage III)
Get and/or give support
Amarillo, TX
Female
About Me
My Journal
I am a Survivor
Type of Cancer
Non-Hodgkin's Lymphoma (Stage III), 2015
Treatment Information
Stage of Treatment:

Currently in treatment

Treatment Types:

Chemotherapy

Computed Tomography (CT) Scan

Fine Needle Aspiration

Flow Cytometry

Lymph Node Biopsy

Ultrasound

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Hospital:

N/A

Side Effect:

Anxiety

Constipation

Fatigue/Weakness

Headaches

Lymphedema

Nausea & Vomitting

Weight Gain

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Discussions (1)
Non-Hodgkin's Lymphoma
I had a PET scan and it showed my NHL Follicular has shrunken in my spleen and my neck, but my ovary lit up. The doctor... Read More
January 9th, 2016
The Lump
October 1st, 2015

I started this little journal the day I found the lump. I guess I just figured from the beginning, this might be bad.

Jul 27, '15
I was lying in Ken's lap watching TV. Well, he was watching while I was sleeping. He did the usual shake of my shoulder and said, "Let's go to bed."

That's when I found it...the lump. My right hand slid across my neck/shoulder as I sat up and this walnut sized, hard lump greeted my fingers.


My first reaction> WHAT THE HELL IS THAT?

Jul 28, '15
The next morning, I carefully showed Ken the lump and he said, "You better get that checked out!"  I called the doctor to ask if I should come in. The next week I would see my rheumatologist and I thought maybe I’d just get him to look at it. My family doc said I should come in ASAP. She made an appointment for me the next day. 


Jul 29, '15
Dr. Hanna was obviously concerned, but she plainly said that she didn't want to scare me. I told her I wasn't going to freak out.  This is what it is, but I need to know.  I need to be told the facts and the truth throughout this checkup. I feel pretty confident to deal with this even if it is bad. She told me that this is not a good place to have a mass. It is at the base of my neck above my collarbone. A sonogram was immediately scheduled!

July 30, 2015
I started reading google today about neck lumps. From what I read, I have a 77% chance of not having a problem. Now, that's what I'm talking about! :^)

Jul 31, '15
Sonogram this morning. Get more information on Monday. Reading Google Again. Found this:
"Supraclavicular lymphadenopathy has the highest risk of malignancy, estimated as 90 percent in patients older than 40 years and 25 percent in those younger than age 40.4" http://www.aafp.org/afp/1998/1015/p1313.html

Copyright 1998 by the American Academy of Family Physicians.

I'm starting to feel a sense of foreboding. I may have cancer. The information I'm reading about the spot where my lump is located suggests malignancy. I keep thinking back to the deal I made with God last year when Madyson, my granddaughter, was sick. It is as clear today in my mind as when I said it.  "God, take me for her. Let her live and take me if you just need a life. I've lived and loved. She is just a tiny baby. Let her live! I'm not ready to go, nor do I want to, but I will die if she can stay."

I must write down my thoughts as I go through this. If it is cancer, I want to remember these feelings.

I love Ken so deeply. I hope he really understands how my life is because of him. He is my light, my lifeline, and my one true love. He gets me, and understands me. He is so wise and full of love for me. When he looks at me with that "quirky little smile, it's full of "I love you's".  I am so happy for the first time in my life, and I want to hang on to it for as long as I have, whether it be months, years, or decades. I don't want to leave him ever.


August 3, 2015

12:45 p.m.--Just waiting for the doctor's office to call me back today with results and what happens next. Not really on pins and needles. In fact, I’m feeling confident that it's all going to work out ok. I went to school and got my room ready. I am a music teacher.  There are two of us in my elementary.  I told Sheryl, the other music teacher, about my health, even though I didn't think I would. She is so sweet.

The doctor’s office never called back. I called them and they didn't have my results yet. Another day of waiting. I'm so disappointed and nervous. Waiting sucks.

 

7:00 p.m. --I told my son, Marcus tonight. Now he is scared and stressed out about me and his life. However, he left with hugs and I love him so much.  I love that boy.  He’ll be okay because we will get through this.

 

August 5, 2015

There are 2 lymph nodes that are affected and I go in for a CT scan with IV contrast tomorrow. I'm scared but feeling positive. I'm so tired.  I have been tired since the beginning of last year. I sweat profusely, too.  Those are both symptoms.  I can't believe it. I want to tell my kids, but it's not fair to do it until I know more. I do not like the waiting.

 

Aug 6, 2015

I went to my CT scan at 10 and discovered I wasn’t supposed to be there until 2. The mix-up got me a little down, but I called my friend, Shelly, and she helped me regroup. She did tell me that everything I read was true, and this is not good. I just feel in my gut that this is really cancer. Hoping I’m wrong, though.

My greatest fear is that my kids will not be able to deal with this. They have worked so hard to overcome great and terrible things in their lives. I don’t want to burden them with one more shitty event to get through. The last and greatest person on my mind is Ken. It’s not fair to either of us to have found true and endless love just to find it short lived. I want to be with him for years and years. I want to be 85 and him be 100. His love has rescued me. I thought love was just not out there for me until he loved me. He gives and gives without you even knowing he’s doing it. I have been such a burden to him already with my family issues and my health going up and my health going up and down like a roller coaster. Yet he is always beside me. I just hope I find out something soon.

Aug 11, 2015

Denise, the nurse, called and told me that the lump was not in the lymph nodes according to the CT scan. What a relief! My doctor wants to wait and watch it for while. If it changes or anything, they might biopsy.

 

Aug 13. 2015

I began telling my friends the good news. I had shared what is going on with about 5 people. They needed to know I’m okay. I received surprising reactions. 3 of them, all nurses, said, “Get a second opinion!”. The others said that this didn’t make sense. All of a sudden, I’m freaking out! More reading on Google Scholar proved that I needed to do something.  Ken and I talked and he agreed. We made a plan to call the doctor and ask a lot more questions. I called Denise and left a message for her to call me back.

 

Aug 14, 2015

Denise called and I asked what it means to watch this lump. Will I make appointments to come in every few weeks? How will I know if it gets bigger? It feels bigger already. I told her that it doesn’t make sense for the sonogram to show lymphadenopathy and the CT scan to show nothing. What should I do? She assured me that I was welcome anytime to come in, but the report clearly states no lymphadenopathy.

 

No bueno. I read that sonograms are extremely valuable in cancer detection. This is ridiculously wrong. I just know I need.... something.  I asked her who I could go to for a second opinion.  She said she would get the doctor to call me.

 

Aug 17, 2015

I call Denise again. She calls me back. We talk. She is sweet, but uninformative AGAIN. She invited me to call everyday if I need anything. Calling her is not helping me!

 

Aug. 18, 2015

On the way home from work today, I became proactive! I called the imaging center and asked if I could get my results. Yep. I picked up the actual CT report from the imaging center. OMG It is terrible. I called the doctor, made an appointment for Thursday at 2:45. That is the earliest they could get me in. I also asked for the nurse to call me. I’m so upset. There are lymph nodes all over the place that are swollen. I’m seriously freaking out over this. Can’t sleep, feel angry. The only thing that makes sense is that my doctor must have only gotten one page of the report. The chest CT WAS fine, but the neck one is effed up! There is even the possibility of a right lymph node involved!

 

Aug 19, 2015

The nurse called at 8:59 am. I told her about my 3 page report. She said that they only got 1 page. Dr. was leaving town at 10. She would get the other 2 pages and put it in front of his face before he leaves. At 10:07 she called and asked if I could come right away. I guess he cancelled his trip. Ken and I left work, and met out at his office.  Now I am signed up for a biopsy on Monday, and they did a mono test today to rule that out. My CBC blood work is good, and that is a plus for me. I am really scared now, but at least we will know something definitive soon. Lump is a bit bigger. They scheduled a biopsy for Monday, and then I will wait until Thursday for my results. The waiting is a killer. Irony?

 

August 23, 2015

I felt horrible today. I cannot have any meds because of this biopsy. My body hurts, and I need my ibuprofen. I stayed in bed until 9:20, then I went back to bed about 12:30 and slept until 3:00. I’m so tired and I don’t want to think. I’m getting so depressed.

 

August 24, 2015

I had taken a half day off, so I wasn’t required to go to school, but I picked up Peyton, went to work, did my 7:30 a.m. morning duty, and then helped some little Eaglets find their classroom. I left for the hospital at 8:30. Ken and I arrived at 9:15 and got into the room by 9:50. They had me lie on my side with a towel under my neck to make the biggest lump pop up. It was a bit uncomfortable, but it wasn’t horrible. They found the lump on sonogram and measured it at 3 centimeters. I asked why it was bigger and they said probably a difference in machine. (yeah, right. I’m not that stupid. These machines must be precise.) The doctor came in and began. I was facing the sonogram, so I watched the whole thing. He gave a numbing shot (tiny sting). Then he pinched my flesh (ouch!) and I felt a LOT of pressure. I guess the guide needle had to go through some tough muscle. I saw it go into the lymph node. (No pain or anything now) He stuck a little needle inside the guide and I heard a snap. This was done six times, but they said one sample was not good. I could see it each time and hear them talking. I heard something about that there was no fatty hilum. When I asked what a hilum was, they said it was all sono talk. I let it go. The lymph was very round and big. They also looked at the CT scan of the right questionable one and the doctor said, “Oh yeah. That’s a lymph node.”

 

I went back to work an hour early and finished my day wondering what the results would be. Now I wait until Thursday at 2:45 to hear the results. Time to tell the kids that something is going on so they won’t be hit out of the blue with cancer news.

 

August 26, 2015

Tomorrow is the day. I feel more and more reticent to go and hear it. I've been reading some more.

http://www.medultrason.ro/assets/Magazines/Medultrason-2012-vol14-no4/06Dudea.pdf

My node meets at least 8 of 12 categories for malignancy. I just need to get prepared for tomorrow. I just cannot imagine hearing the words, but I’m trying to wrap my head around it. I do not really want to deal with this, but I just may have to. I mean, who wants it? That was stupid to think, but being a realist I understand that 1 out of 3 people and 4 out of 5 families get cancer. I sure as hell cannot say, “Why me?” I mean, “Why not me?”

I asked God to take me and let Maddie live. I don’t go back on my word. If I have cancer, and I die, then that is what will happen.

 

August 27, 2015

I’ve waited all week for today. Today is it, and I don't really want to go because I am afraid.

Ken and I walked in together holding hands. We sat in the room and waited. I wonder what it feels like to tell someone they have cancer. How do you do it? I looked at Ken and quickly looked away. I know he is as as scared as me. The doctor walked in with a weary face and sank my heart with the news:                  non-Hodgkin's lymphoma

I wondered what this would feel like.

Now I'm seeking my thoughts to define my feelings.  Fear? some, confusion? definitely, a bit of anger but not a lot, I don't even hear the doctor. We have questions, but I'm not really hearing the answers. I'm fighting back the tears. I know if I start it will be a flood. We leave the office and head home to wait for the children. We have all agreed to meet at the house no matter what the outcome is.

How do I tell them? One other time I have them information like this and it was so destructive.. I'm not dying though. I have a chance. I'm going to fight. That's how I tell them. They must help me fight.

 

We've told them all. They acted brave, but I know they are terrified. They are strong and they will fight....for me. My friends know now as well. It's so surreal. Oncologist tomorrow to make decisions.

 

Aug 28

Dr. Esler is amazingly friendly and calm. He says we need more tests. I DO have cancer, and if it is what the needle biopsy says, I won't need chemo or radiation. I will take an immunotherapy drug for two years. He says this is treatable and I'll live for a long time, but it likes to come back.. I was so encouraged. I went back to work and joyfully finished my day. Tomorrow...RANGERS game with Tina!!!!

 

Aug 29-30

My daughter had bought me RANGERS game tickets and a hotel room for my birthday (It was July 25). Who knew that this weekend I would definitely need this distraction. What a wonderful trip. She is already helping me fight. I have to fight everyday just to stay positive. I will remain joyful and positive. I will!

Aug 31

PET scan today. Keeping a fake positive attitude for myself. FAKE IT TIL YOU MAKE IT is what I've always told my kids. I'm scared the doctors will find this mess everywhere in my body! I’m always tired and exhausted. I fell asleep during the procedure. I just wonder how long until I will know. The lady at the desk said that Dr. Esler would call when he had results. I hate waiting.  I went home and cried while holding my cat. How ridiculous is that to cry to a cat? My daughter told me that I needed to apply for Family Medical Leave Act so my job would be safe. When I called about it, Mrs. Sheppard invited me to come to main office of AISD. I filled out FMLA paperwork. I can miss up to 60 days without fear of losing my job or my insurance. It is retroactive to the day I started missing. I’m just really depressed.


 Sept 2, 2015

I’m so worried about my job. This is an email I sent to my principal when the doctor wanted to be there ASAP:

“I have to be at the doctor at 1:30 to get the PET scan results. Is it okay if I leave at 1:15 and return ASAP…hopefully by 2:15? Sheryl will have kindergarten by herself, but she says she is ok with it. If it isn’t okay, I’ll take a half day and put in for a sub. (won’t get one) On the 3 half days I have missed, I have always come back two hours early, or not left until I had worked 2 or 3 hours.”

 

The doctor showed Ken and I the PET results today. It is stage 3 because it is above and below the diaphragm. It is in my spleen. Actually, he said it is throughout my body and may even be in my bone marrow. Treatment will be the same unless the surgeon pulls out a different kind of cancer.        Sept 7, 2015

I cried today for a couple of minutes. Then Ken and I held each other and cried for a few. We are both scared and we don’t know what to do.

 

Sept 9, 2015

I left work again today to meet my surgeon, Dr McNeir.  He seemed very nice and scheduled my lymphectomy on Friday morning at 9:30. I went on over to the hospital to pre-register. I got done around 1:15, so I ate lunch on the balcony outside alone. It felt good to be in the warmth of the sun. I feel so overwhelmed right now. Just too much stuff in my head and in my heart. I’m exhausted with all the information and things to do, but I just keep going. What else do people do? How do you get through this without getting on with it?  I don’t know any other way to go than forward. I’ve been tough. I’ve kept a positive outlook. I really do feel as if it will all be okay, but I just feel like sitting down on the floor and bawling my eyes out. After I went back to work at 2:00 and worked until 3:10, I took Peyton to her daddy and I went to have a beer with Jesse. I love that guy. We just talked about other stuff, and it was great. I talked to Tina tonight on the phone. I kind of tested the waters to see if she could handle me feeling a bit broken. I think she did great.

This is the latest email to my school and close friends: “Thank you once again for your kind comments. Ya'll are very edifying with your positive attitudes. Of course, here at the "Ridge", we know miracles happen everyday. I appreciate all the love, hugs, smiles, waves of affirmation, and such. Do not ever think that you shouldn't uplift another person because they might be tired of hearing it, or overwhelmed.            

 

                                                                                                                                                

Sept. 14, 2015

I’ve just been looking at medical bills and I am a wreck. I do not think I can handle the stress of keeping up with all this mess. I cannot afford cancer. Don’t know what I’m going to do. I’m missing work like crazy. 4 times in 3 weeks. It is only going to get worse and I am overwhelmed with the “What am I going to do?” attitude. 

To top that off I have a post-op infection in my shoulder. Oh yay! And to make that better, some damn people I don't called me tonight. Can’t everyone just leave me the hell alone! I want to curl up with my Kenny and cry.

 

Sept 15, 2015

I just want to go sit in my closet and cry. I have so much to think about and I'm overwhelmed. I'm so damn independent that I refuse to talk about my problems with others. I know Ken is just as scared and worried as me. Money, cancer, treatment costs, insurance, time off. It's all too much right now!

 

Sept 21, 2015

I’ve had to sit back and take a deep breath. Bills are just going to have to be looked at and put aside for reevaluation of how and when to pay later. I’ve already put so much on my credit card that the ones that will allow me to wait are going to have to wait.


Sept. 23, 2015

I talked to the oncologist’s assistant yesterday. She didn’t have my pathology, but was going to have it faxed over. If it’s all good, she said I might start my treatments tomorrow. I’m kind of excited about that, and a little bit nervous. Not knowing how they will make me feel is a thought. I’m just going to hope my experience is not too bad. I do not want to have to miss work Friday because the medicine made me sick on Thursday. The first one is 6 hours long. The listed side effects possible include the following: fever, chills, and those below.

  • TLS (tumor lysis syndrome)—has occurred in patients using Rituxan to treat non-Hodgkin’s lymphoma (NHL) and chronic lymphocytic leukemia (CLL). It is caused by cancer cells breaking down and can lead to kidney failure and the need for dialysis treatment or cause abnormal heart rhythm

  • Serious infections—these can happen during and after treatment and can be fatal. During clinical trials, 2% of people taking Rituxan developed serious infections

  • Heart problems—Rituxan may cause chest pain and irregular heartbeat. Your doctor or healthcare team may provide treatment or decide to stop treating with Rituxan if you experience these symptoms

  • Kidney problems—especially if you are taking it for non-Hodgkin’s lymphoma (NHL). Your doctor should do blood tests to check how well your kidneys are working

  • Stomach and serious bowel problems that can sometimes be fatal—tell your doctor right away if you have any stomach area pain during treatment with Rituxan

  • Changes in blood cell counts—during treatment with Rituxan, your doctor or healthcare team should do regular blood tests to monitor your blood cell counts

 

September 28, 2015

Day after tomorrow, I go for my first treatment. I’m getting psyched up for it. I’m thinking that the more prepared I am, the less scared I’ll be when I have the “reaction” she said everyone has. I do not even know if the treatment will stay the same since I don’t know if the cancer is the same or not. I see the doctor that morning. My shoulder and part of my neck is still numb from my surgery. It is very annoying and I wish it would just get the feeling back. I’m hoping that it does eventually come back. I still have not felt mad or angry about this disease. Maybe at some point, I’ll think that. Right now, it does not feel as if anything has really changed except I am paying lots of bills and missing much too much work. I have so many friends praying for me and loving me. Work friends always let me know they are thinking of me. They’ve been emailing from other schools as well. All my personal friends text me all the time, or call. It is so refreshing to have that kind of support. Without wanting to sound negative, I do get annoyed when people who haven’t spoken to me in years call to “get me to come back to church”. Leave me the hell alone.

October 1. 2015

I did not get my treatment the other day because the insurance has not yet approved it. I was pretty down about it, but I just acted sarcastic and funny. I'm keeping ym positive attitude even if I have to make myself laugh all day. Sarcastic humor always makes me laugh.

I feel horrible today though; like I was kicked in the stomach. I have an infection and I have to go get meds. I have little immunity, now. I am working sick because I cannot afford to use up more days. So the laughter is more "whine"ter than anything else. I wonder if a few glasses of wine would fix my "whine"ter! LOL 

October 2, 2015

Treatment was approved! I start on Rituxan Monday. Thankful, but a bit scared. Yesterday, I went to the doc for a UTI. Today I am vomiting and fell like I've been kicked in the stomach. Awful pain. I worry that maybe my UT is cancerous. How would they know? They glowed on the PET scan, but the doctor said that was normal because all the sugar goes there. I'm going to ask lots of questions when I see him Monday. I've had many UTI in the past year, and I've never had them before.

January 8, 2016

It's been awhile. I've had my initial 4 treatments and 1 maintenance treatment. How am I doing? Good question.  I have tried to be a great faker with my smile and positive attitude.  It seems to make all my co workers and friends happier if they think I'm fighting this like boss!  The truth is that some days I truly feel like a boss. My attitude is actually positive and I feel pretty great, but the other days while I'm smiling, I'm not so sure.  During the initial 4 treatments that occued once a week, I actually felt terrible. The doctor said there were little or no side effects. NOT TRUE. The first day after, I had gas and felt nauseated and yucky. The second day I had constipation all day. The 3rd day usually felt better, but the 4th day I would throw up all day. By day 5, I was so tired I felt like crap and I didn't want to go to work, but I went hoping to get through this year without getting docked in pay too badly. On day 6, if I hadn't ripped myself silly trying to pass poop, I was so sick and uncomfortable I wanted to cry. Then it was day 7 and time to start over.  I was seriously trying to keep a positive attitude and cowboy up! Everyone seemed to need me to be focused on fighting the good fight, so I did it. I went to work. I did a good job while I was there, and I worked hard. A couple of people thought I must be faking, or my cancer must not be so bad.  They asked jokingly, but it still zinged my heart because I am in this damn boat rowing for my life while trying to make it look easy, and someone actually says that even if it was a joke. 

Getting past those first 4 was very hard, but I did it, and my PET scan at the end of December showed improvement. That was after my 1st maintenance treatment; however, it showed a hotspot on my ovary. The doctor didn't seem overly concerned, but he did seem perplexed and wants to scan again in March. So how do I feel now? I'm elated that the cancer is shrinking. I am stoked that I don't have weekly treaments. I'm ecstatic that I feel sooooooooo much better. BUT...yes, there is a BUTT...I'm nervous all the time. I have a terrible pain in my left side behind my ribs--right where my spleen is--that is persistant. I told the doctor on my last two visits and he poo pooed

March 19, 2016
Feeling tired a lot again. Pain in rib cage in front and back now. Onco Doctor says it isn't the lymphoma and doesn't know why, but suggested inflammation. Family doctor doesn't know why, but suggested "Costochondritis" which causes chest pain that is related to inflammation of cartilage in your rib cage.
My pain is located in the space where a human hand would fit on the rib cage below the breast.
I'll just keep taking my Ibuprofen and tramadol. I get a treatment on Tuesday and a scan as soon as insurance approves it. Like always, just wait and see.
I am noticing a lot of things good and bad about having cancer, inner well being, and social interactivity. People who never talked to you before want to speak to you. Sometimes it's good sometimes not. I struggle inwardly about issues that did not used to bother me.

June 30, 2016
My last PET scan showed that the tumors are all gone. I am still receiving treatment, but I am officially a survivor!

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