Karen K.
Posted by

My experiences of Non-Hodgkin lymphoma

Karen K.
Posted by
02 Oct 2015

Hello, everyone, and thank you for taking the time to read this blog. It is my first blog, so be kind and patient if you will! Also, I’d like to apologize for you having to be here because it means that you or someone you love has or has had a blood cancer.  It’s not fair and it stinks, but fate never asks me my opinion on things, so I get what I get, and I got cancer. Burkitt Lymphoma to be precise. It’s a terrible disease, but there are worse, so for that I am grateful. 

Let me tell you a little bit about myself.  I am 5 days shy of turning 45.  I am married to a wonderful man whom I had waited my whole life to meet.  I am also a registered nurse.  I graduated nursing school in 1994 and have worked in the intensive care unit for most of my career.  Ya, I’ve seen a lot of bad things, so that’s how I know that there are worse things than cancer.   I won’t sicken you with the gory details, just trust me on this one.  Anyway, my husband and I married on January 23, 2010 at a beautiful old plantation just west of New Orleans, which is where I am from.  It was the best time of my life.  We moved into a great 2 story house in a good neighborhood, I had a job that I liked and so did he.  So, what comes next? Of course, baby makin’.

If you did the math, you would be able to guess that I was 39 when I got married, and I had no time to waste getting pregnant.  It was about in March that I went to see my gynecologist to assist us in making it happen.  He put me on a medicine that increases ovulation and we were to see what happens.  However, soon after that I began to get sick.  I was hot ALL THE TIME, and like the capitalization implies, it was indeed all the time.  It was like my furnace was at full blast and someone kept shoving more coal into it.  I had night sweats.  My abdomen began to get bloated.  At first, I thought that maybe these were baby symptoms, but every month the test would come back negative and my abdomen would just get bigger. 

I was very uncomfortable, to say the least.  I couldn’t eat much because it would increase pressure in my abdomen and the pain would increase.  At work, in every room that I went into I turned the temperature down to 55.  Nurses and even doctors began to take notice at my plight, but no one ever guessed what was really going on.  My gynecologist did an ultrasound and it showed that I had a cyst on each ovary, likely caused by the medicine that he put me on to help me get preggers.  It was a common side effect.  He decided to treat me medically, which, unfortunately included putting me on birth control pills in order to fool my body into shutting off the ovaries for a time.  He thought it would maybe take a month to fix and then we’d be back at it.  But, there was a problem: it wasn’t working.  I was getting worse!  I now looked like I was several months pregnant my belly was that bloated.  I began to call in sick to work because of the pain and generalized discomfort I felt.  I had to take cold baths to get any relief from my internal heat.  I went to the emergency room twice for the pain, and they gave me pain meds and sent me on my way, never having done anything to investigate the actual source.  I remember I had called in sick one day, and my back started to hurt.  I went to bed to lay down, and it felt like my spine was undulating like a snake or something.  It was incredibly painful and I called my husband as I was freaking out.  Again, ER-pain meds.

That last weekend was the worst.  I had to miss my friend’s wedding because I couldn’t bear to move.  Monday morning I made my husband call the gynecologist and demand that I be seen immediately.  He had to fuss at them a bit, but got me in.  I begged the doctor to operate on me.  I told him I couldn’t live like this anymore.  Doctors never want to do surgery.  It’s life risking, and they will do whatever they can to avoid it.  However, he couldn’t deny my pleas and he admitted me that day for IV fluids and a CT scan and prep for surgery. 

Tuesday morning, July 23, 2010, exactly 6 months to the day of my wedding, I was wheeled into surgery.  For some reason, even after they had given me goofy drugs, I called out for my OR nurse.  She came to me and I said, or probably slurred, “If anything happens to me, call Dr Suleman.”  I don’t know why I did that.  I must have known, or angels made me do it, or whatever.  Dr Suleman was a general surgeon and close coworker of mine whom I trusted, apparently, with my life.  The nurse agreed. I think I saw her write it down too.  Then they put me on the table and knocked me out for good.

The next part I will recap as I was unconscious for this.  From what I was told by my gynecologist, he went in via a bikini cut (though the last time I’d worn one was when I was 17) and when he opened me up, he said he didn’t know what he was looking at.  That is NEVER a good thing!  He had a great deal of experience with ovarian cysts, but not whatever this was.  So my nurse spoke up and said to call Dr Suleman, as per my wishes.  The good doctor promptly arrived.  To his dismay, he saw lymphoma tumors that were attached to my ovaries.  He had to cut me from stem to stern in order to remove them.  So much for the bikini cut! 

I can’t imagine what my family had to go through when the doctors came out to tell them the bad news.  How awful that must have been for them.  My routine surgery was suddenly very un-routine for everyone involved.  I awoke from the anesthetic in the intensive care unit on a ventilator with a breathing tube in my throat.  I’d taken care of hundreds of people in this exact situation, but I’d never experienced it from this side.  Once I was fully awake, I was quickly weaned off the ventilator and was given the news.  I had lymphoma.  I guess at this point, my current status was lucky in a way.  I was on a lot of pain medicine and it helped soften the blow a bit.  But my husband wasn’t.  I still don’t know how he was able to maintain composure.  He was a rock, and a rock that I very much needed at that moment.  He was my protector.  I gave up all control to him and let him take charge of everything, and he did it all without breaking down in front of me. 

As you can imagine, I had a lot of nurses visit me at this time.  They all knew the diagnosis.  They all wanted to help.  My mother lives across the country from New Orleans up near the Chicago area, and they all pooled their money, even Dr Suleman, whom I was later told gave $100, and bought my mom a plane ticket.  She arrived the next day, and I had to tell her.  She cried.  She was devastated.  I was her baby, and her baby had cancer.  I never want to be in that situation ever again. 

A not so funny thing happens when you remove giant tumors.  Oh, the CT scan, I later found out, showed 2 neoplasms in my abdomen, one was 7 cm in diameter, and the other was 9 cm in diameter.  Pretty darn large for tumors! So, what happens, at least in my case, was the dead tumor cells that were shed during surgery clogged up my kidneys.  I was in acute renal failure now to boot!  My body filled up with so much fluid that you could barely see the definition between my toes.  After a hickman catheter for the chemo was placed in my chest, a muhurkar catheter was placed in my jugular vein for dialysis and I was transferred to the big hospital downtown to begin my treatment.

Now, let’s talk about cancer.  Nobody wants to talk about cancer, but I’m not nobody so…here we go.  Burkitt lymphoma is an extremely aggressive and fast growing cancer.  Those who get it have 4-6 months to live without intervention.  I was at the 4 month mark, and at the last stage: stage 4B.  Staging cancer is done by degrees of involvement.  And the B part meant I had metastasis to other areas of my body, specifically my spinal chord.  Even though I was extremely ill and on dialysis, they had to begin chemotherapy immediately. I was assigned to a fabulous oncologist, Dr Philips.  He was brilliant in every way, and not yet 40 yrs old.  I was at a teaching hospital and even through the haze of my narcotics, I could hear him spouting off things as if he had an eidetic memory.  I was in exceptional hands, thank god.  It is extremely important to trust your doctor.  If you don’t trust him or her, get a new one.  Don’t worry about anyone’s feelings.  This is life and death we’re talking here.  Trust your doctor or get a new one.  I can’t emphasize that enough. 

I was in the hospital for a month. An entire month. My kidneys turned back on luckily, and I was able to walk and talk and use the bathroom.  I guess they had their fill of me.  I went home to a hospital bed in the living room.  It felt so good to be home.  My cat didn’t leave my side for 4 days.  Either she missed me or she really enjoyed having a bed in the living room.  I’m going to go with the former.  Our bedroom was upstairs, and after about a week, I decided that I couldn’t live in the living room anymore.  I had to take 2 rest stops, but slowly, and eventually, I walked up the 11 steps to reach the 2nd floor.  It was a huge accomplishment for me at this point in my life. 

My chemotherapy treatment regimen was as follows: week 1-in the hospital for 5-7 days receiving chemo, week 2-at home recovering from week 1, week 3-neutropenic so don’t get sick, and week 4-starting to feel better from week 1.  Then it began again.  It was relentless.  After my 2nd treatment, my hair began to fall out.  It was medium length and black, and every morning my pillow would be covered in hair.  It grossed me out a little.  Month 2 my husband shaved my head, and I cried the entire time.  I was now bald. I was a bald cancer patient.  Me.  Eventually it all fell out.  Eyebrows, eyelashes, legs, arms, and, ya know, everywhere.  You have no idea how much a human needs hair to regulate their body temperature.  One little breeze over me and I was sent into shivers! Hats, or if you’re vain like me, wigs are a must.  Life is too cold without them, and I live in a subtropical climate! I can’t imagine what people have to do in Canada to keep warm. Jeez!

So, as you know, I’m a nurse.  Nurse’s treat patients. Doctors treat diseases.  I’d never heard of Burkitt lymphoma.  I only knew what the doctors told me.  But nurses understand the foreign language that is medical terminology, so whenever we get a patient that has some peculiar problems, we go look it up.  It took me 4 months to get the nerve to do this.  I didn’t want to know.  Ignorance is bliss, and also if I look it up, it made it more real.  I am proficient in denial.  No, really, I am, and better than most too.  I sat there reading and crying for hours.  I had come so very, very close to death and didn’t even know it at the time.   I saw pictures and microscopic slide images and knew that some pathologist had taken a sample of my malignant tissue and saw the same thing that I was looking at.  I thought how it must have been oddly exciting for him or her because the Burkitt form of lymphoma is very rare.  That pathologist may never see it again in his/her career.  And the doctors, well, they were almost giddy at times it seemed because they may never get another chance to teach their residents about Burkitt first hand.  Good for them, eh? Right…but what I did find out in my reading through my tears, was that even though this cancer was crazy aggressive, it was also highly treatable.  I had about a 50-75% chance of remission.  Those are good odds.  And if it didn’t work? Then I would need a bone marrow transplant, but Dr Philips didn’t want to discuss that until he had to.  Luckily, he never did. 

That first month I was in the hospital, a friend of mine was my nurse.  I trusted her to tell me the truth.  I asked what was it going to be like, being on chemo, and she told me that everyone has different reactions, but, from what she’s seen, fatigue is the worst symptom.  I thought, fatigue? That’s it? I’m usually tired and lazy anyway, so if fatigue was what I had coming, I could handle that.  Well, let me tell you, the fatigue is so exponentially worse than anyone can imagine.  Mustering the strength to get up to the bathroom took a good 5 minutes.  The fatigue was terrible!

And the neutropenia.  What is it? It’s when most of your blood counts are so low that you need blood transfusions and can’t go into public places without a surgical mask on your face.  I’d taken microbiology.  I knew what was out there.  I was afraid to leave my house.  Really, I was.  I sprayed everything with disinfectant, used hand sanitizer when a good soap scrubbing wasn’t available, and didn’t leave my house except to go to the doctor’s office or the hospital.  Despite all my efforts , I had septic shock twice.  39.5 fevers, delirious, vomiting, all that great stuff, which meant even more hospitalizations.  I counted it up, in total from beginning to the end of my treatment, I’d spent over 3 total months in the hospital, and that’s out of 9 months.    

It was about Christmas time when I began to feel hopeless.  My tired, bald, sick self  just couldn’t take it much more.  I could see no light at the end of my tunnel.  I lived from day to day, never thinking about the future.  The future was too scary.  24 hours was all I could handle.  But that’s also all I had to handle.  All I had to do was make it from 1 day to the next, and start over again.  And if even that’s too much, then make it from morning till afternoon, and if you make it till the afternoon, then you make it till bedtime.  I went to my doctor and told him I was too tired to go on with treatment.  He told me that I was past the ½ way mark, that I was close to the finish line, and if I could make it this far, then I could make it till the end.  So I did it, 24 hours at a time, in a revolving 4 week cycle, for what seemed like forever. 

I contemplated my death once, or out loud once.  My long estranged father wanted to see me, and I told my husband that maybe I should agree to see him before I die.  Ooo, this pissed him off.  He told me that I was not going to die and to never think that I was because I wasn’t.  I didn’t 100% believe him, but I pretended to.  But I really am hard to kill.  I had a life threatening illness as a teenager, oddly blood related also, but not cancer, I was in a tornado, and I worked through hurricane Katrina, among other stupid life threatening behaviors I may have engaged in when I was younger.  It just wasn’t my time yet.

During my last treatment in late February of 2011, my husband and I decided to celebrate by going on a Caribbean cruise.  With that decision, the light at the end of my tunnel finally returned.  I had something to look forward to besides more chemo.  It was quite possibly the best decision we ever made.  2 months later, we were on a giant ship heading to the islands.  I got to swim with the dolphins which was a bucket list thing for me.  I felt free, well, freeish.  The tiny fragments of hair that were returning, suddenly fell out and I was devastated about it, and the chemo gave me fibromyalgia, and the fatigue had lightened, but hadn’t completely gone away.  But I  wasn’t in the hospital anymore, and I didn’t plan on returning either.

That was 5 years ago.  Though I still have the fibromyalgia, my hair did grow back.  And the huge scar covering my abdomen now has a cancer tattoo.  I’m a survivor.  I’m cured.  I have released most of the fear of the cancer returning, and I am looking ahead into the future to see what life has in store for me.  I believe that if cancer didn’t kill me, then I have some reason to still be here.  I have unfinished business.  I don’t know what it is, because, ya know, fate doesn’t ask for my opinion, but I know it has to be good! 

Comments

02.11.2015

Karen,

Thank you so much for sharing your experiences of non-Hodgkin lymphoma so openly with us.

You've been through so much but what comes across loud and clear is your determination and courage throughout. I'm sorry to hear that you're still affected by the fibromyalgia - have the doctors been able to prescribe you with anything to alleviate the pain for this?

I'm a blood cancer survivor myself of 11 years and I don't think that the fear of it possibly returning ever truly goes away. You just think about it less and less and as a result become less worried each time but the niggle remains.

Stay in touch and all the best going forwards. You have a lot to live for!