Punchy Mommy Believes in Life

How I evicted the worst uninvited overnight guest and took back my life

Category: Primary Mediastinal B Cell Lymphoma

Is it true that somewhere over the rainbow, skies are blue?

storm and rainbow

I got the chest x-ray. DH, being a doctor, looked at it on our computer at home. And, there it was. A shadow. It was near my lung. Its lines were blurred. It was out of focus. But there it was. Something.

I was convinced I had lung cancer. I had childhood asthma growing up and if there was any weak link in my body I guessed it would be my lungs. After DH and I looked at the x-ray, I got in touch with  my doctor. No wait, I tried to get in touch with my doctor.  She wasn’t returning my messages. I called and called. DH was home early that day and he called too. Little Man woke early from a nap and the three of us went to the park to take our mind off everything. Finally DH got through to a nurse who read the x-ray report over the phone confirming what we saw, something. The report actually says, There is an irregular right perihilar opacity recommend nonemergent follow-up CT to further evaluate. DH told the nurse that he wanted to speak with the doctor and a few minutes later his phone rang. He walked away from where Little Man and I were playing and proceeded to have a loud and mean sounding conversation with the doctor. I was freaked. Eventually, the conversation ended. DH said that the doctor wasn’t alarmed by the results of the x-ray but recommended that I have a CT scan of my chest just to make sure. She told DH, we get one of these about once a month. If I had any idea of how upset your wife was, I would have called myself instead of having my nurse read you the report.

I cried the whole weekend while DH assured me that it was going to be ok and that x-rays are notorious for being inaccurate. I had the CT scan on Monday morning and by that afternoon the results were in. DH and I blew up the doctor’s phones to get through to her so that we could get the results as quickly as possible. The hospital refused to give us the results directly. Finally, the doctor called us mid-day.

Can you come in this afternoon so we can go over the CT results? Yes, of course. But, what does the report say? Well, I really want to talk about it with you in person. Ok I understand but please, tell me, what does it say? Well, it’s, it’s not good.  It looks like it’s a tumor.

My world began to spin faster than a teacup ride. DH and I melted on the floor of the bathroom and between us cried a gallon of tears. I cried so much that I must have cleaned out my tear ducts because now my tears come right out of my nose. I still thought it was lung cancer. What else could it possibly be? It was a tumor in my lung, I was convinced.  DH called his office and asked two of his colleagues to watch Little Man so we could meet with the doctor.

We dropped Little Man off and then drove straight to the doctor’s office. We cried the whole the way there and walked bleary eyed into her office where we were taken back to an exam room quickly. Choking back tears, the doctor said the following: blah blah blah blah large blah anterior mediastinal mass blah blah blah invasion of the superior vena cava with extension into the right atrium. Blah blah blah.  And then she said, as if it mattered, the following measurements are likely to have underestimated the true size, but the mass measures roughly 4.1 by 3.6 by 3.8 cm in size and extends towards the tricuspid valve. Overall, the entire mass measures approximately 8.7 x 6.4 x 11.8 cm in size. Blah blah blah blah blah lymphoma should be strongly considered although other malignant processes such as germ cell tumor or malignant thymoma cannot be excluded.

Spinning, spinning, spinning, spinning.  That’s all I remember. That and, strongly consider lymphoma. Wait, lym what? Oh, it’s not lung cancer it’s lymphoma. Duh, I should have thought of that.

The doctor wasn’t reading fast enough for DH so he started to read the over her shoulder.  He gasped at one point, I think where he saw that the tumor was invading my superior vena cava. That’s gasp-worthy. Based on these results, the next step was to take a fine needle biopsy of the tumor to get a proper diagnosis. That was scheduled for the next day.

DH and I left sobbing.  We picked up Little Man and tried to act normal for him. I don’t think he understood what was going on, but he did give me a few wondering looks as I silently cried while reading books to him. It was a beautiful sunny day and as we sat on the floor of his playroom reading, all I could think was, is this the last time I would ever read to him?

Somewhere over the rainbow, way up high
There’s a land that I’ve heard of once in a 
lullaby.
Somewhere over the rainbow, skies are blue
And the dreams that your dare to dream, Really do come true.

Someday I’ll wish upon a star
And wake up where the clouds are far behind me
Where troubles melt like lemon drops, 
High above the chimney tops, 
That’s where you’ll find me.

Somewhere over the rainbow, blue birds fly
Birds fly over the rainbow

Why then, oh why can’t I?
If happy little blue birds fly beyond the rainbow
Why, oh why can’t I? 

I think I was dying

Watching the storm-071

No one has every told me how close I was to dying, like how many days or months I had to live when I was diagnosed. Now that I think about it, I don’t think I want to know the answer to that question. What use is it to me at this point? But, if I had to describe what I felt like before I was diagnosed I would say that it felt like I was dying.

Hindsight is 20/20 so they say. Before I became pregnant with Little Man I lived a healthy life. I regularly exercised, mostly ate well, practiced yoga, played intramural soccer, and I loved being outside. This all changed when I became pregnant. It was a difficult pregnancy. I had a lot of morning sickness in the first trimester, which mostly consisted of feeling exhausted and queasy. I had so little energy during those first three months. I could barely walk from a parking lot into a store without feeling winded and dizzy. My energy never really returned and I was sluggish at best for the remaining six months. I also had pregnancy insomnia and rarely had a good night’s sleep. My struggle with exhaustion persisted even after Little Man was born.

I returned to work part-time when Little Man was five months old. I remember feeling like I wasn’t totally ready to return to work or to deal with the stress. It took me forever to get ready in the morning. I just couldn’t wake up.  Getting to work by 10 a.m. was a goal I often wasn’t able to meet. It seemed like my brain functioning was off too.  It was hard for me to write, I felt uninspired and exhausted. I just couldn’t get my brain cranking. Also, I started to have shoulder and neck pain. The best way I can describe it is that it felt like I had slept on my side and my top shoulder rolled in towards my chest during the night.  Then, when I woke up and tried to sit up straight I felt a shooting pain through my right chest and shoulder.  This happened on an off and I figured it was from loss of muscle from the pregnancy coupled with poor posture from carrying Little Man. So I ignored pain. I bought new pillows. I went to yoga, then Pilates and weight training to build upper body strength. When the pain was really bad, I started going to a chiropractor. When all of that failed, I bought a new mattress. I was convinced that a new mattress would ease the pain.

Then, one day when I was on the floor with Little Man after his bath drying him off and getting him dressed, I felt pressure in my head.  It felt like my face and the top of my head were pulsating. I started to notice it more and more when I bent down to pick something up.  It came and went but soon it persisted and was there all the time. I even felt it when I was just resting and not doing anything active.  It became worse when I laid down and sometimes I woke up with a swollen face. It hurt.

Soon, there were days where I just felt like I could never catch up on sleep. Little Man started sleeping through the night at five months and I was often able to take a nap during the day but I still had trouble sleeping at night because I couldn’t get comfortable. I was ALWAYS tired. I started taking B vitamins, multi-vitamins, and calcium. Maybe I was vitamin deficient?

I also craved sweets a lot. I had dreams of going to donut shops, waiting in line and salivating at all the choices. I couldn’t satiate my appetite for sweets, especially cookies. I was able to control my cravings and weight with exercise and I just thought it was hormonal.

Did I go to the doctor? Yup, at least three times. I told them my story. They listened to my heart and lungs, took my blood pressure, drew blood and unanimously said, you’re fine sweetheart. Your blood work looks awesome! One doctor even went so far to say, Being a young working mother is really hard. Most of my patients report the same thing. Exhaustion is just a way of life. It all started to get pretty depressing. 

Did I tell DH and my family? Yup. No one had any answers. Everyone I knew told me I was fine so I started to believe that it was me. I knew I wasn’t making these symptoms up and that I really felt them. There were days when I woke up and as I lay in bed staring at the ceiling, I thought to myself, am I alive? My heart rate was slow, my body felt heavy.  Some days I felt like I was walking through thick mud or quicksand. I was depressed and unhappy. Something wasn’t right. But, I never stood up for myself and shouted, hey, there is something really fucking wrong here people! I betrayed myself. I didn’t listen to my body. I’ve always considered myself to be tough and pushy. I don’t like taking “no” for an answer.  I know how to be an advocate for myself and through the years I’ve figured out ways to get what I want. What went so terribly wrong here? How did I fail so miserably?

It seemed as though I was watching a storm brewing but not recognizing what it was.  I was looking through the storm to see what’s behind it instead of looking inside.  What exactly was happening?  The symptoms all got worse and I even developed other strange ones. Small spider veins appeared on the right side of my chest. I then had strange dry patches of skin on my arms, which didn’t respond to lotions or steroid cream. Then came the itching. My lowers legs itched so much and nothing eased it. God, the itching was bad. By Summer, 2012 I was complaining loudly.  Especially about the neck and shoulder pain that wouldn’t let up. What did all these weird things mean? Finally, in October, 2012 I made an appointment with a new doctor and DH and I went together to see her. The doctor didn’t seem impressed with my tale, but she ordered some blood tests and DH said, hey, while you’re at it, could you order a chest x-ray just make sure everything looks ok? The doctor thought it was a fine idea and so, she ordered one.

It really was no miracle. What happened was just this… [singing]
The wind began to switch / The house, to pitch
And suddenly the hinges started to unhitch