Wrestling with Non-Hodgkin's Lymphoma by Bob Cook
Thank God I am cancer-free. But I still feel the profound effects of chemotherapy. Tired, slightly achy, weak, digestive issues, and sleepless. I have one more dose of chemo in a couple of weeks so these feelings will continue for another month. It’s to be expected but I’m looking forward to the night when I can sleep for more than two hours and the day when I can tie my shoes without nearly blacking out.
When I made this category of “recovery”, it is not from the disease but from the medicine.
Today I go in for the PET scan to determine if the cancer is gone. I will not know the results until I meet with the doctor this Friday the 13th!
This fourth chemotherapy has been the hardest treatment yet. They used the same medicines but it was harsher on my body. A little more painful, internally, and longer-lasting exhaustion.
The internal pain is vaguely familiar. I remember once doing daredevil stunts as a kid, we climbed on top of the roof of our garage, then jumped off. When I landed on my feet I felt my guts jar. I’m sure it jostled my diaphragm, kind of an almost-hernia. It didn’t knock the wind out of me but hurt my guts. That’s a little what this feels like.
And my neck pain is not in the back but the front. Again, this is slightly familiar pain. Like when you are trying hard to blow up a balloon that won’t expand. Your cheeks are sore but the discomfort includes your neck and ears.
And the stomach pain is manageable. I still can’t tell if I am hungry or have a sour stomach but a little food every hour calms it down.
All that said, I hope and pray that I am cured. I’ll do what the oncologist says, even if it means more chemotherapy but I continue looking forward to when it’s over and I can be pain-free and drug-free.
“The Lord God took the man and put him in the Garden of Eden to work it and take care of it. And the Lord God commanded the man, “You are free to eat from any tree in the garden;” Genesis 2:15 (Certain restrictions apply.)
Each time I wake up, several times at night, I feel pretty much the same. Go to the bathroom, then get a drink of water to rehydrate my bone-dry, parched mouth. Blow my constantly running nose and crawl back into bed. But the 4:00 AM time is different. At this time my stomach makes bizarre, violent noises.
A normal hungry stomach has digestive fluids squirting into it in preparation for food. Then you get a little growl. That would not keep me awake. These roiling signals are more than musical. They are dramatic, theatrical, but not entertaining.
These noises are coming from somewhere throughout my digestive tract. Not just one spot but in full-stage, Dolby stereo.
How could I recreate these unearthly, peculiar noises? I’ve had two months to imagine so here you go: Get a cheap, blue, plastic kiddie pool. Put it on the roof of a minivan. Fill it with Jello. Throw in a dolphin and a piranha. Add a hand full of silverware, two original Slinky’s, and a bag of large marshmallows. Feed the dolphin a Red Bull to encourage him swim in circles. Now, lay back on the floor of the minivan and listen. Close your eyes. Yes, that’s it.
It’s not loud enough to wake my wife, but I have to wonder what sort of digestive gods are throwing punches down there. Between rounds they rest on creaky rocking chairs. I appease them with Chobani yogurt until tomorrow’s match.
At first I did not know how these medicines would affect me. But now the side effects are all established, and the worst of them have been avoided. Here is a list of my current abnormalities;
Have you ever drunk one gallon of water in one day? Sure, you landscapers, gardeners, exercisers are used to hydrating to compensate for perspiration loss. So you drink a lot of water. And you seldom visit the restroom.
Since chemotherapy started I no longer garden or do physically demanding things, but I still have to drink one gallon of water every day. It helps flush out the chemo…often. Day and night.
Now I’m used to the rhythm of nocturnal bathroom visits: Every two hours. Bed at 9:00 PM, up at 11:00 and 1:00 and 3:00 or 4:00 (now), and finally up at 6:00.
Chemo has irritated the lining of my nose and mouth, slightly. Like a mild head cold. Both nostrils work on and off, partially, making my mouth do all the breathing work. So when I wake up my mouth is as dry as sandpaper. Drink more water. Repeat soon.
For the last six days I thought I was teetering between having a stroke or a heart attack. I was wrong.
The last round of chemo caused my blood pressure to elevate. I will not mention my specific BP’s or heart rate because everyone has their own baseline. But we have a blood pressure cuff and I’ve been monitoring it every couple of hours and tracking it.
Recently my blood pressure rises then some tightness in my chest. My family doctor gave me a number to be concerned about and I hit it every day. Then I would take a nitroglycerin pill that immediately dropped it by 30 points. I doubted that this should be a daily event.
Today I went to my family doctor to address the issue. I showed them my records and symptoms and the attending nurse asked “Why didn’t you call 911?” They immediately gave me an EKG that came out normal. After a pow-wow they realized this might not be a heart problem. Now to the expert.
Finally, to resolve the issue, I went to a cardiologist this afternoon. I could not believe a busy specialist suddenly had time for a new patient. After reviewing the tests done in the cardiolab, he gave me solid information and sound advice. The numbers my doctor gave me were over-cautious. Everyone’s BP changes through the day. My variable blood pressure can be higher and is acceptable to all of us. The discomfort in my chest is not heart-related, it’s just chemo damage. Put the nitro back on the shelf. Rest easy. This too shall pass.
After getting two hours of sleep I woke up with a very dry mouth and pounding heart. And a strange little light flashing from an unknown source. Sitting up I drank some water and the light source changed. Going into the bathroom it followed behind me. It’s the electronic patch on the back of my right arm, delivering medicine and slowly strobing to let me know it’s working.
The racing heartbeat is certainly from mountain of med’s coursing through my veins, but mostly the Prednisone, an immunosuppressant. Side effects: loss of appetite, trouble sleeping, etc. After gauging my blood pressure this morning I can see it going down just by drinking more water. The doctor surprised me yesterday saying I must drink at least one gallon a day! Cheers.
They warned me that chemotherapy will cause hair loss, so I’m prepared for temporary baldness. But nothing has happened for two weeks…until yesterday.
I have thick hair (with a little balding beginning in the back) so this is going to be a mess. Last night in the shower I shampooed and rinsed and noticed, not dozens, but hundreds of hairs on the floor. Then when towel drying, hundreds more came off in the towel! At this rate, in couple of days I’ll be a chrome dome.
What about body hair? I’m not quite Sasquatch but that’s going to make a dramatic cosmetic change…no details offered. (Although as a preview they had to shave various regions of my chest for the port install and electrodes at last week’s cardio-tests. I look like an old teddy bear mauled by the family dog.)
Brother Wayne tells of his sister’s chemo experience. She lost all her hair, including her nose hairs. Imagine their purpose of filtering and protecting, gone.
Maybe all those old-man-ear-hairs will vanish too. But, can I keep my eyebrows?
Feeling drained, we are all laying low for Christmas. My blood pressure is still somewhat elevated and I feel it. Throbbing and pressure, eventually the discomfort returned to my chest. So, time for the prescribed nitroglycerin tablet. Dissolve one (tiny) tablet under tongue. If pains continue, repeat in 5 minutes. If pain continues, dial 9-1-1.
Thank God the one tablet worked. Amazing how it immediately opened my veins and gave relief. The pressure is off and I feel much better. Ice cream for desert.
This Christmas is getting better by the minute.
I’ll see my medical doctor tomorrow to be sure I have the right blood pressure meds.
After church on Sunday my heart was beating harder and faster than usual. Not the normal flutters after too much caffeine or exhaustion. And a new sensation: Slight, fleeting tightness in the center of my chest.
We stopped at Walgreens for an accurate blood pressure measurement. It was high (161/110) but she suggested we call the doctor and/or go to the E.R. We did both.
When you walk into the emergency room with “chest pain” they have an immediate response of get you in the wheelchair, zoom to the exam room, attach sensors, get vitals, draw blood and conclusions. After the flurry of probes and pages of questions they ruled out stroke and heart attack but because my father had a heart attack in his ’60’s, they insisted I stay overnight and see the pulmonary team.
New to me: A nitroglycerine patch stuck to my chest. It slowly leaked nitro-paste into my system. It is a vasodilator that improved circulation and delivered a headache.
It was a typical, stressful, non-restful night in a shared hospital room. Neighbor’s TV, hall lights, slamming doors, helpful employees checking vitals, drawing blood three times looking for “markers” of heart attack. Hard to sleep with this battery pack/dial instrument like a walkie talkie in the front pocket of the gown, attached to five colorful wires glued to my chest that recorded my heartbeat during my stay. I slept from midnight until 4:00 AM when the alarm went off.
My unseen but clearly-heard neighbor across the hallway was an elderly lady who wanted to leave against the will of her caregivers. So they attached a device that alerted them when she escaped her bed. Loud, high-pitched beeps, four in a row, repeated until they went to her room and told her it’s still bedtime, several times.
Thank God for daylight, but no breakfast. I was under nothing-by-mouth orders in case they had to do surgery. I was the first one down to Pulmonary and four hours of heart exams; CAT scan, MRI, Echocardiogram and the stress test. I actually looked forward to all these analyses. Because of family history I wondered the same thing: How is my heart?
Summary: My heart is in excellent shape but the stress of chemotherapy has elevated my blood pressure. So, my love affair with coffee has ended and daily meds are added. And we’ve added new daily habits of checking temperature and blood pressure. And taking a walk.
Lumpy Bob 