My CLL Progression – Dealing With It
CLL Disease progression and change and how both JV and I struggled against them.
2011 began harmlessly enough, as it has last few years. Made note of increases in lymphocytes Jan 27 34,000 by Aug 15 66,000.
Early in 2011 I kept trying to take lessons with WTC pro, even though I would take many breaks. Because of stoppages I always booked lesson for an hour, knowing I could only last a 1/2 hour.
1/28 An appointment with Dr. Walker…”A woman was just in here; she’s having a terrible time with hemolithic leukemia, when white cells attack red cells.”
I thought to myself…Why is he telling me that? One of those…if you think you have problems. Maybe he was trying to add perspective to my CLL case. Maybe he was alerting me I could be facing a similar outcome in future. Not sure I needed to know that.
Maybe for 1st time I could feel disease progression…extreme fatigue playing mixed doubles.
Despite feeling weak I played a WTC men’s 3.5 match vs Pelican Marsh, and my partner, Ron Baum, and I won 6-2, 6-3. This was my last team match as I was weakening steadily.
2/20 My writing style revealed I was feeling pretty good, although on 2/13 I must have slumped because I wrote, “Didn’t feel good today” spent much of day on couch. I continued to experience up and down swings. When I had good days I took lessons, played doubles.
I began to notice left side pain, but I had days when “I felt good.” My white cell count was high (47,000) which begged question, “How can I reduce my white cell count?” Dr. Walker…”You can’t without chemo, and you’re not ready for that; it would make you sick. You can drink carrot juice, whatever, won’t do anything to your white cell count.”
4/23 – 27 More up and down swings. One day I became exhausted on court. Felt better next day and hit with Bill Simonton, a strong player he was hitting above my comfort level and strained my right knee as a consequence. I can never leave well enough alone.
We return to Fairfield and on 9/9 Dr. Duda my Fairfield, CT, hematologist suggested it may be time to have chemo, “You’ll feel better.” Sounded odd to me as both my Albany and Fairfield doctors have kept stressing chemo would make me sick. Duda must have sensed my discomfort, perhaps I looked pale and sickly. Knowing I was vulnerable to infections, flu, I began staying away from parties and the like.
5/9 After 2 and 1/2 day drive back to Fairfield CT, we start our Fairfield routine. We walk to beach. I was uncomfortable, out of shape, and not even close to wanting to play tennis. Play par 3 golf, another beach walk, and I slump. My right knee makes it hard to walk, I become irritable, got tired of seeing JV’s backside. JV…”If I walk as slow as you I become stiff. Can’t move that slowly, wears me out.”
I start fighting depression again. My primary MD gives me an anti-depressant.
5/24 Bad vibes are picked up immediately in my writing. Script is large, written hurriedly…obvious signs writing had become a chore not an enjoyment. When I feel good I enjoy forming letters…script is small, can pack a lot of words in small space.
5/27 Another beach walk, this time in slow motion. And again 5/27-28 only few lines of text, most of these pages are blank. I’m back on anti-depressant.
6/3 I attempted a downhill walk, barely made it out of Mosswood before turning around.
6/4 my first anxiety attack. I lie in bed but can’t lie still, relax. I wonder how can I turn around my attitude? JV does all she can to boost me up…”How about a little golf, would get you out of house.” “I don’t think so.”
6/7 Have trouble sleeping, anxiety is right below surface, I start to sleep and anxiety wells up, wakes me up, start to sleep, anxiety again, like it’s taking up residence in my body, I struggle for hours this way. Perhaps because of anxiety, lack of sleep, mouth is dry, nose conjested, energy lack. Walk downhill to Y, I almost couldn’t make it.
6/14 A visit to Brooklyn to visit Jess and family is not reflected in writing…2 blank pages. Total lack of writing enthusiasm.
6/17 We return to Fairfield, and Rebecca becomes cross with me. In consternation…”I can’t believe your’re sick again. Happens every time you return to Fairfield. Asthma last summer, then stomach. Is your problem mental?” Becca’s reaction causes slump, and I experience waves of anxiety that night. Try to work out next day, but low energy discourages me.
Many blank pages in journal as I struggle against waves of anxiety. My anti-depressant doesn’t seem to help so I stop them, didn’t enjoy dopey feeling.
7/26 visit from Kaplowitz’s. As usual we play mixed doubles but I had to quit after short time, too exhausted.
8/7 Tried a beach walk, could hardly make it. Waves of anxiety in AM.
3 days of blank pages, my white cells now 66,000. Back on Zoloft as I felt desperate, trying to break anxiety cycle.
8/22 tried to walk downtown, but lacked energy to leave our complex, return to couch.
I have Dr.Duda appointment. Described how I was feeling. He felt stomach, “Your spleen is 15 to 18% enlarged, avoid pressing down on left side, other lymph notes also are swollen.” Dr. Duda takes a lymph node biopsy to check on chromosome anamolies. “It is time for treatment, watch and wait period is over.”
Question then, should I receive infusion therapy in Fairfield or Naples. I called Dr. Walker’s RN to explain predicament. “Can I talk to Dr. Walker?” “He won’t talk to you until he sees results of blood tests.” Not the reassurance I needed. Faxed them. Finally a call back from Dr. Walker’s RN. Dr Recommends you come to Naples for treatment, you have time. These medical issues are swirling around me, but I can barely put on paper what is happening to me.
JV notices my reluctance to write, she asks when we saw a movie. “I have no idea”…no journal entry as reference. At that moment we both realize we missed my logs. JV…”Without your logs it’s like my life is not worth living, I’ve lost my historical reference, my bearings.”
She’s right, but how do I muster strength to return to writing routine? My mood has been so poor.
I’m back on anti-depressants again. Dr. Duda starts me on anti-gout medicine so I can be ready for infusion in Naples.
9/19 Guess being depressed doesn’t count. Still experiencing anxiety which keeps me awake most nights. Back on anti-depressants, they make me dazed. Walk in slow motion.
Numerous blank pages in journal, and when I write my script is clumsy…a chore to get over. At night I have anxiety over my anxiety.
10/10 We return to Naples.
White cells are 57,000. Dr. Walker and Dr. Duda disagree on whether my treatment should start. RN… “Your medical records don’t suggest an immediate need for treatment. If your lymph nodes aren’t bulky, and if you are feeling OK…no reason to treat.”
10/16 mixed doubles and I switch to the Weed, a much lighter and more forgiving racket than my Avery.
I try singles against a strong player, and I felt nervous walking out on court. Could feel my tennis slipping away from me.
10/25 2 more singles matches, and I was overwhelmed in both. I could not stay in points.
10/27 A very tough night. I don’t recall feeling so bad. See Dr. Walker in morning, explain my poor feeling, my nausea. Blood test returns my highest white cell count, 85,000. “You’re at stage IV, time for treatment your disease has changed.”
11/1 …start of infusion therapy…Treanda (chemo) and Rituxan (monoclonal antibodies). Treatment on alternate dates. Also receive a cell booster shot to counteract effects of chemo which depletes white cells.
11/8 Chemo is quick…30 minute bags while Rituxan takes 6 hours. White cell count drops immediately to 20,800.
RN…”No tennis for 2 months, 6 – 9 months rehab, recovery from stage IV will take awhile.”
During infusion therapy I complained to RN “I’m feeling chilled.” RN…”You will get the shakes.” I throw up. She puts me on a saline drip. Calls Dr. Walker and he prescribes anti-nausea and Benadryl. JV picks me and drives me home to couch, piles blankets on me, I fall asleep.
Next day nausea is gone, but I’m wiped. Call from Tammy, “One of your tests is a little high, take your anti-gout, you’re showing signs of dehydration, come in for a saline drip. Saline will help flush out white cells from your kidneys.”
11/11 JV drives me back to cancer center. 1 and 1/2 hours on saline drip. Feel nauseous again.
11/15 to cancer center for blood work and conference with Tammy. This time I drove myself, was feeling stronger. After blood work I go to infusion center waiting room. All chairs were taken, a man immediately stands and gives me his chair. (Do I look that bad?). Meet with Tammy,
“Your blood work is good, but your blood pressure is way too low.” She puts me immediately on an IV bag replete with saline, steroids, anti-nausea. This was an unexpected 2
hour bag. I call JV, “I’m hanging on a 2 hour bag, be home as soon as I can, clear the couch.”
Next several days are carbon copies. Nausea in morning, waves of anxiety in afternoon and when I try to sleep. Start to sleep, anxiety wakes me up. In a vicious circle here, get very little sleep
11/21 JV goes to airport to pick up Rebecca and family, in for Thanksgiving. I join the family for zoo trip. Ana loves giraffes, and Naples zoo has 5.
11/22 Dr Walker appointment. “Your white cells are doing great, 7,500, your nausea is from Treanda, he prescribes anti-acid and anti-depressant.
11/28 back at cancer center for Rituxan (monoclonal antibodies). RN warns me…”you’ll have good days and bad days. That’s the way it is with chemo, antibodies. PV…Will I get used to it?” RN…”I don’t think you ever get used to it. You know what to expect is all.”
My infusion starts, Benadryl and 1,000 grams of Tylenol. My face felt itchy, and I had swelling around my lips, nose…clearly a bad reaction to something. “Nurse!” “You shouldn’t have any reaction, not 2nd time on Rituxan. Same amount, we gave it to you faster.” At home bad reaction continues, my heart beat rapidly, went to couch, and I could not move.
11/30 On Treanda for 30.’ Next day Rituxan, always a tough slug for me. RN…”Your Rituxan reaction is a good sign. Your white cells are attacking other damaged white cells and killing them, letting your blood do its work. Your infusion results are very good. You have 3 weeks off.”
12/1 Drive to cancer center for a cell booster. Drive was tough for me, weak, trouble focusing on drive. Back to couch, where I essentially stay for 5 days, nauseous every AM, feel very weak rest of day.
RN says blood tests are great, but I don’t think I have felt so bad. Don’t think I can take much more of this, discouraging. Is this one of those…cure is worse than the condition? Different when playing high stakes poker.
12/6 Cancer Center finds my white cells at 16,000; I was surprised and disappointed at increase. RN “All other signs are good.” Mentioned my up and down feeling. RN…”That’s how it goes. Do you want another saline drip, anti-nausea.” PV…”I’ll return home and drink water, not up for another IV stick.”
12/8 – 12/12 Try to walk loops in WTC, but I still have no strength. JV prepare meals. I’m nearly helpless. Still unable to sleep.
On 12/17 I did write, “Do I sense I’m feeling better. 12/14 white cells are 10,000…back to normal. “But my stomach?” Walker…”It’s the chemo, take anti-acids. Fatigue, nausea…classic effects of chemo.”
Finish year with many blank pages. “Still not feeling well.”
Last trip to cancer center in 2011 shows my best blood work yet..8,300. “Perfect. You should
be feeling good.” Jessica and family are in for Christmas. Close book on 2011. Tough year.
Did not write the 1st week of 2012 (Becca’s condo leak). White cells are 9,000, but return to infusion therapy.
1/23 Rituxan…a 3 hour bag. As usual I don’t feel good, feverish. On return home JV piles blankets on me to reduce my chills.
1/25 back for Treanda, blood pressure low at 109. In Infusion room I hear beep, beep, beep, coming from all sides. Beeps mean end of infusion or change drip speeds. I’ll never forget those beeps, a haunting sound I’ll always associate with an infusion room.
Journal jumps from 2/10 to 2/15. JV and I walk out of WTC to Pine Woods across street, a slow walk for me.
3/7 A tough day for me. No other details, just tough day.
3/16 our neighbor, Quenton Zell, dies at 3:40 in AM. 90+ years. I sat with Quenton frequently in his driveway on returning from cancer center. I didn’t want to move, and he couldn’t. A very gracious man, he always offered me a bowl of Doritoes, although he could not get them. I sat with him 2 to 3 times a week while his wife, Dot, played bridge.
3/31 I actually manage a beach walk, although on 4/1 JV and I play mixed doubles against Den and Fran, and I tired quickly. Sat out while the 3-some hit back and forth.
4/2 1st sign of canker sores in mouth, another after effect of chemo. Once again I hear, “Comes with territory.” These canker sores last for 1 week, eased somewhat by so called “magic mouthwash.”
4/9 A dinner party for 4 guests. I felt well enough to cook.
4/12 My cardiologist gives me a stress test; I did OK.
4/15 First signs of Bell’s Palsy. It affected left side of face, my left eye. I couldn’t blink, also developed a persistent pain in back of head. Uncomfortable, discouraged, I couldn’t journal. For 1st time I can remember JV filled in for me. JV was missing my writing. She drafted a page.
We start drive to Fairfield. Bell’s Palsy presented a challenge. I had to blink my left eye manually. We couldn’t use the air conditioner because it would dry out my eye even more. Head ache, burning eye, and I was trying to stay in lane. I felt effects of palsy until after September. I couldn’t even attempt tennis, Palsy impaired my vision. Many blank pages.
9/3 JV and I play tennis for 50,’ I could not move, I went to bed immediately after a small supper. I was so tired. For next week a steady dose of anti-depressants, up early, but in bed rest of day.
9/6 Dry eye made reading difficult, TV difficult to watch…made for long days.
Blank pages in journal, what writing was done was done in a hurried manner. I do make it over to fitness center, but struggled here, nothing is easy.
Early signs of Parkinson’s
5/1 I’m not sure when I 1st noticed JV had changed how she walked. Was a gradual change, indistinguishable from 1 day to the next. But I began to notice her walk. She began walking slower; before she would leave me far behind, now I was able to keep up with her even walk ahead. She took off some days which never happened before. She walked as if her right side was stiff, she dragged her right leg. Looked uncomfortable a definite gait change. Curious about cause, I googled “gait change.” I was. dismayed to read, “gate change, an early sign of Alzheimer’s.” JV seemed oblivious to what was obvious to me.
I started looking for other signs of dementia. Was she more forgetful than usual? Agitated?
JV’s mood remained upbeat. Not surprising, she’s the most upbeat person I know. Leg drag and limp was simply another challenge of aging, something else to add to our bone yard.
What bothered me some is JV serves as family accountant. She pays all bills, keeps up with cash flow, knows if we have to toe line on expenses. I didn’t relish thought of her unable to continue, and my taking over. We’d file for bankruptcy in a month.
Not that I wasn’t concerned with signs of dementia…so often emotions are tangled up with “how does it affect me?” What is my stake in this, besides providing emotional support?
I’m always anxious to maintain status quo. I was struggling big time with my leukemia. Can we both handle our chronic conditions, can we both be caregivers of each other? Who is more needy. I didn’t relish idea my taking over accounting job. That’s her job.
I have my blood. She has her brain. We’ll make a good pair. JV has been my caretaker. Now I’m her caretaker? Almost like we should throw another person into equation.
Confusion between Alzheimer’s and Parkinson’s is not unusual.
A PD patient…”I am a little unusual because I didn’t get too upset when I found out I had Parkinson’s because I was afraid I had Alzheimer’s so it was actually a relief for me. Now I am being told that Parkinson’s also can affect my cognitive abilities. Who knows?”
Because of JV’s chronically sore lower back, She’s referred to a back surgeon.
She proceeds to back treatment…epidural for pain relief..but MD had difficulty in inserting needle between vertebrae. Target area was narrow, seemingly calloused. Any further work with epidural option ruled out, guess she lives with chronic back pain.
After reaching advanced age we realize we are all dying while living. How long is gap between life and death? JV, even with PD, acts as if life is unbounded by death fence. As for moi, I’ve been camping just outside death’s door since diagnosed with CLL in 2002. I’ve become familiar with grim reaper. He/she not a bad guy, always has your back, although I wanted he/she to be as far back as possible.
8/2 Appointment with my Fairfield hematologist reveals an extraordinarily low white cell blood count…2,700. “Would this make me so tired?”
As we prepare for our return to WTC, we join Rebecca and family on a tour of Statue of Liberty, Ellis Island. Enjoyable tour, but I dragged.
10/7 Return to WTC, on this leg JV shares in driving, I couldn’t last long behind wheel.
Blank pages until 11/7. I did join a men’s doubles group, but I couldn’t play, was still too weak. To try regain stamina JV and I walk in WTC and Pine Woods across street.
12/14 This is an aside, but it is very relevant to us. 3 years ago on this date, Fairfield and Southern CT. residents are stunned by actions of Adam Lanza who took an assault rifle, killed his mother than drove to Sandyhook Elementary School and massacred 20 children and 6 staff, before killing himself.
Sandyhook is only 20 miles from Fairfield, Rebecca and family know many families who lost loved ones.
In an editorial by New York Times: “After the schoolhouse massacre three years ago in Newtown, Conn., a state commission focused on the Bushmaster semiautomatic rifle the shooter used to slay 20 children and 6 workers in barely 5 minutes with 154 rounds. It found “no legitimate place in the civilian population” for such a war rifle and its 30-round magazine.”
We pass this playground when we exit Penfield beach; we choke up every time. There are 20 of these playgrounds in beaches and parks in S. Connecticut. They are dedicated to the children killed by Adam Lanza on that tragic day in December. Jessica Rekos, 6, is honored by this playground…Jessica, a name shared by one of my daughters (I’m choking up again).
On that day in 2012, I’ll never forget a stirring exchange between the CT Governor Malloy and a frantic mother who rushed to the school. “You must help me, I have to find my child. What hospital did they send the children to?” Governor Malloy shakes his head, “There is no hospital. There are no survivors.”
May 2013, we were in Sandy Hook School District to watch Dom play baseball against the Sandy Hook team. The school is only 20 miles from Fairfield. We lost our way and wandered onto the road around Sandy Hook Elementary that had been closed to traffic. The school scene haunted me. The school was bordered up, silent, a tall barbed wire fence encircled the school to keep away curiosity seekers, souvenir hunters. The former Sandy Hook school resembled a prison.
Sandy Hook school has now been demolished; a memorial will stand in its place.
On 12/12 Dr. Walker detects an irregular heart beat, and on 12/18 my cardiologist confirms A-fib. He thought my A-fib could contribute to fatigue. He puts me on Xarelto (blood thinner) to reduce stroke risk. I wonder if A-fib could have been caused by chemo. Dr Walker…”I don’t think so.”
Very little writing through rest of year.
Jessica and family are in for Christmas, New Years. I did feel a little stronger, and we actually hosted a breakfast buffet for 10 people, a positive sign I was feeling better, although I still struggled on tennis court, and finally dropped out of men’s doubles group. I pledged not to play again until I felt stronger.
1/7 My cardiologist prescribes Metoprolol to help control my heart rate.
1/8 Cancer Center reports my white cells are 6,300, and all other blood markers are well within normal range. Dr. Walker…”Your CLL is in remission, and could remain this way for 5 to 10 years. No way to tell how long remission will last.
1/30 JV’s back had been bothering her and she was referred to Dr. Lust, a neurosurgeon. He detected what he thought were early signs of Parkinson’s. JV had noticed a slight tremor in her right hand.
2/7 Dr. Lust refers JV to Dr. Wey, neurologist, as a follow up to his suspicion of Parkinson’s. Dr. Wey holds JV’s wrists, watches her walk. “Smell?” “Lost it years ago.”
Dr. Wey…”I’m not ready yet to diagnose you with PD. You have PD features.” He prescribes a regimen of back exercises (so called “Med X”) to strengthen her back in hopes exercises would ease back pain. “I’ll watch you through routine office visits,” gives her a muscle relaxer, sensing our distress…”You’ll die from something else, not PD.”
7/8 JV notices again I have stopped writing. JV…”I really regret your not writing. Was so much a part of your life for so long. I miss the journals, a great family reference.”
I do start writing more, but what I don’t see is…”feel good” on top margin of day. I generally kept a running log of simple statements such as that, like a weather appraisal.
But JV’s PD’s diagnosis took wind out of my sails. I essentially closed my journal and put away my pen. I was done journaling. Was becoming too painful. Was I in denial? No doubt.
I didn’t even buy 2014 journal. Was almost a year before I could write PD in journal. I had an easier time accepting my CLL than I did JV’s PD. As you may recall, we decided not to tell people about my CLL. JV had no such trepidation about her PD. She’d been complaining about losing her “smeller” for years, without realizing a loss of smell is one of the early signs of PD.
From 3/1 to 4/1 journal is full of blank pages. Keep trying to play tennis, either JV and I for a brief hit or mixed doubles. I rarely last whole time.
Drive back to Fairfield where beach walks or walks to Rebecca’s is how we exercise.
8/4 We take both Rebecca’s and Jessica’s families to Grand Canyon on our 50th wedding anniversary. Rebecca had ordered T-shirts with “Vernon Venture with Grant Canyon image in front and # 50 on back. Great time with both families who rarely get together…Jessica’s in Madison, WI, and Rebecca’s in Fairfield CT.
10/9 We fly back to WTC. One of my tennis partners picks us up from airport. Mostly blank pages to year end. Not willing to write yet.
The year I stopped writing, cooking, playing tennis. Year JV is diagnosed with Parkinson’s Disease (PD)
1/14 Dr. Wey puts JV on Carbadoba/Levadopa…a dopamine supplement. Pills have an immediate positive effect. Her gate improved immediately, although the meds gave her nausea in AM. JV loses 30 lbs, now weighs 115.
3/29 JV…” I’ve often wondered why you stopped writing. I enjoyed your journals so much, I thought they helped you. Was your not writing because of depression, because of CLL?”
PV…”Do you really want to know? Major reason I stopped writing was your being diagnosed with PD. Your disease absolutely floored me. I marvel at how you’ve accepted your condition unconditionally. For months I refused to accept it. If I had kept writing, my writing would have been too negative. So I didn’t buy 2014. I did buy 2015, but I didn’t start journaling until 4/1/15. I could not even write the word “Parkinson’s for a year after diagnosis. I was trying to help by not writing about it. I refused to accept PD into our lives. We were already confronting CLL. Did we deserve or need another progressive condition?
3/16 Count Down to Gurney
3/17 Dr. Yin directs hospital procedures in preparation for cardiac catheter oblation. Cat Scan at Naples Community Hospital (NCH) to detect obvious blood clots if any. Should I feel nervous? I have no feeling whatsoever. Been such a long haul. What’s worst that could happen, outside of death?
3/18 Endoscopy at NCH, also to check on blood clots. Propofol puts me to sleep. When I wake up, RN…”You’re ready for Dr. Yin.”
All systems go for tomorrow. JV…”You know it’s not too late to cancel. I’m not sure it’s worth risk. According to standards, you’re 5 years beyond age cut for oblation.”
PV…”No. I want to go through with it otherwise I always will wonder, maybe it would have worked. Would be good to feel better, to have more energy. I’m ready.”
JV…”I’m nervous. Dr. Yin will go into your heart, will do something.”
PV…”Dr. Yin says the 1st oblation has a 60% success rate. 2nd attempt has an 80% success rate.”
3/19 Cardiac catheter oblation (CCO)
We are on road to NCH at 5:00 AM, no breakfast. CCO is set for 6:00. 1st stop is admitting. JV is sent to waiting room. Soon RNs help me transfer to gurney. They wheel me into pre-opt room. RNs and PAs hover around me. Take vital signs, ask me questions. “When is your birthday? Do you know why you’re here?” They wheel me into OR room. I spot Dr. Yin standing against a wall, waiting. PV…”Do you feel sharp today?” “Yes.” (I could have used a more elaborate answer.) Dr. Yin was all business. RNs had already shaved my chest, my groin. RNs set IVs in both arms. I’m lying there, feel relaxed.
Suddenly, I wake up in post-op room, 3 hours later…time warp. JV is standing over me. “It didn’t work. Dr. Yin couldn’t do the oblation.”
PV…”What do you mean?” My mind is still groggy. JV…”What I said. Dr. Yin couldn’t do procedure. Nothing was accomplished. We spent 3 days getting ready for nothing.”
Dr. Yin walks in room carrying an X-ray. “I couldn’t get the catheter up your left side to your heart.” (My eyes are blurry, can hardly see.) ” your right side is fine. See. Like a highway. Veins on left side have too many twists and turns, vessels are small. You have a rare condition I’ve never seen before.”
(Dr. Yin exits immediately, leaving RN to pick up pieces.) “Sorry it didn’t work.” She removes my IVs. Then at gurney foot she ducks low.
PV..”What are you doing?” “Removing your urinary catheter.” “I didn’t know I had a catheter.” “You were out, easier that way, you can’t feel it.” (Then she lifts up a bag full of yellowish liquid.” “What’s that?” “Your urine. Been hanging at gurney end.”
JV helps feed me a light lunch. After 2 hours. RN…”You can’t leave until you pee. Let me help you into John.” I sit down, nothing seems to happen. “Did you pee?” “I think so (couldn’t tell). They wheel me curbside in wheel chair. Before I leave hospital, RN…”Don’t put any weight on left arm, keep it still (She doesn’t say why.).
Home to couch. I don’t recall anything else this day. I did notice severe burning when I peed. Uncomfortable in bed, I soon moved to den, watch TV. No sleep this night.
Severe burning for next 3 days. Couldn’t sleep, became exhausted and incontinent. I call Dr. Yin’s RN. “You have a urinary tract infection. I’ll put you on an anti-biotic (Cipro).”
Pain and incontinence show no improvement. I call my primary care doctor. He puts me on another anti-biotic.
3/24 Co-pilot Andreas Lubitz, 27, flies a Luftansa jet into mountainside in Switzerland killing all on board (147), an obvious suicide. This tragic news helps me pass time during recovery.
Blank journal pages until 4/1. April fool’s day, the day I set for my re-birth, my re-generation. Things are different from this day forward. I started to look through rose colored glasses. BOOM! Like someone flipped a switch. No warning as fog lifted, fog that had enveloped me for almost 5 years. I resolve to make up for lost time, although at 75 will not be easy. JV…”You should be content to play doubles.” “Nah, I want to be beating 65, 70 year olds.”
JV…”In your dreams.”
PV…”Holding a tennis racket after all this time will feel so good. I’m going back to the wall, how I started to play tennis. I reflect back to hitting against wall at Indiana U, back to Chicken Run Road, and your dad’s farm, and his barn outback where I broke all barn windows practicing my serve. Learning to move again on tennis court could be my biggest challenge, then there’s my stamina.”
4/4 I’ve returned to my logs, as if I never had a hiatus. My writing just happens, letters, words are formed effortlessly. I enjoy forming letters, again start writing in small print, page after page…”Hello journal, glad to make your acquaintance again.”
4/5 We go to brunch at Aida’s. JV brings an egg and cheese quiche. 8 people at table, we talk about NCAA final IV games, and another late night. I describe JV saying she’s going to bed. I say, “I’ll be right there. Let me take off my adult diaper, and remove my hearing aides.” JV’s response…”That’s the worst pick up line I have ever heard.” The table breaks out laughing.
By end of day JV was calling me Diaper Man…a new kind of super hero.
4/6 Follow up with Dr. Yin. JV asked to stay home. I agreed. JV was still burned by failed oblation, and after all those tests, why he didn’t call off the oblation. I went through a failed procedure, needlessly suffered through a urinary tract infection.
Before appointment I biked 4 laps round complex, dropped JV off at club so she could watch tennis, now 10:50, my appointment was 11:00, I start driving. JV had given me a bagel, I start to eat it, but mouth is so dry I can’t swallow. I park at office, get out of car, I immediately feel faint. I rush into office, speak to RN, “I have to lie down!” She immediately starts taking my blood pressure. BP started at 90. She took it again. 90. Gives me a glass of water. BP Falls to 80. Takes repeated BPs, drink more water. BP starts to rise, reaches 100. PV…”I guess if I’m having a heart attack, I couldn’t be in a better place.”
“You’ve got that right.”
I’m ushered into Dr. Yin’s office. Dr. Yin…”You must have lots of questions.”
“Just 1. What happened?”
“Your right side is OK, artery is like a highway. Left side is different, you have small twisting vessels. You have a rare condition, as I told you in hospital, I’ve never seen it before. Without having access to both sides of heart, oblation is not possible. (Dr. Yin shakes his head) “I can’t do anything more for you.” (Dr. Yin looks at empty chair beside me.) “Where’s Joyce?”
“Joyce is mad at you.”
“I hate it when people are mad at me. But wait. How can she blame me for your body? You’ve probably had this condition since you were young…1 million to 1 odds against it.”
“Joyce thinks you put us through wringer for no use. After all tests she wonders why you couldn’t tell oblation would not be feasible.”
“I really couldn’t tell until I tried to go in. I wanted it to work. I wanted to help you.”
“So now I live with A-fib, no recourse. Won’t A-fib affect how long I’ll live?”
“No. For you it’s a quality of life issue, not length of life. Nothing will change how you feel right now.”
“What about a 2nd opinion?”
“I’d encourage that. I know someone who’s good in Providence RI. But I tell you, If I refer you to him he’ll immediately ring me up. “What is it about Vernon?”
“I would have to say. Don’t do anything, not worth risk.”
“One option now is to go back on amioduran for several months and then try another cardio version, but I’m not sure it would work. We may be out of options.
Joyce and you have to decide how long you can tolerate how you feel. With A-fib stroke risk can be reduced by blood thinner.”
I walk out to car. I feel contemplative. Never experienced a “nothing can be done scenario.”
4/7 My left arm is very painful, from blood clots I guess.
We help celebrate our neighbor Dot’s 91st birthday. We prepare a big evening meal, 15 people. I did the cooking with JV serving as my sous chef, I still can not use my left arm.
We had a good time. Jade and I trade Peace Corps stores. Memories rush back, suddenly we are in Sabah with Kadazan friends. Suddenly, my brain fills with smells, heat, the basketball, Mt. Kinabalu.
Several guests help wash and put dishes away. Party did not break up until 9. We went right to bed, but we were too keyed up to sleep. It had been a tough year, what with JV’s PD diagnosis, my depression, and my continuing A-fib.
4/8 I start a paleo, Mediterranean diet…fruits, nuts, raw garlic, banana and peanut butter (no bread).
JV…”That looks so good. But I’m nauseous, maybe from my meds. I still can’t eat much, no coffee, and I used to love coffee.”
Why do I feel so good? I spent last 2 years in doldrums. Many reasons and a few stand out.
• Failed oblation was liberating. I took that next step, didn’t work out, but I gained comfort in knowing I did all I could.
• I was beginning to realize that more was involved with my rejuvenation than my reaction to failed oblation. JV had said numerous times, “I know so many men and women who have A-fib, and they are playing tennis, they are high functioning. I flinched at the implication of this statement. In other words, “Why aren’t you also doing the same.”
JV’s words were hurtful. They contributed to my downward mental spiral. Reminds me how careful one has to be when judging someone’s actions or lack there of. JV clearly felt I was not living up to her expectations, and she let me know it. Her words frustrated and discouraged me. Should have said…”Sometime try walking in my shoes.”
• I was feeling extreme discomfort from my urinary tract infection, blood clots In my left arm (which led to deep bruises) and chronic dehydration.
•. A fog had been lifted off me. A fog that lasted without relief for 2 to 3 years. Does this mean I’m bi-polar? We’ve long suspected my mom was a manic depressive, she would experience wide swings in mood. I could have inherited this tendency from her, although of late my lows have been my dominate mood.
•. Question now is how can I maintain my up feeling by driving depression out of my life?
•. What an outcome! From a failed oblation procedure I have turned over a new life page. I did all I could, now how do I live with it? Looking back over last month, I would not change anything…a failed procedure saved my life? Who would have thought? Could Dr. Yin have dislodged something, if so what? Was like my heart, my mood went “BOOM!” Everything changed, even my eye sight, my hearing improved.
4/9 Feeling a burst of energy, I take 2 slow and careful bike loops. Then JV and I go to Riverchase Dermatology to see Shanna, a PA who’s been checking us for years for pre cancerous skin growths. As usual we have back to back appointments. RN…”Why don’t you guys go in together.” She ushers us into procedure room. “Take off all your clothes except underpants. Put on these paper robes that are open in back.” This was an hysterical scene. JV and I are essentially nude waiting for Shanna. I say to JV…”Suppose we become amorous?” Shanna enters and gives JV a complete body inspection. I admired JV’s restraint. When it was my turn was as if Shanna could not keep her hands off me. Good thing I didn’t take my morning Cialis pill, I could have walked out of there with a 4 hour erection. I did learn 1 thing. Don’t think I’m a candidate for group sex. Here JV and I were essentially nude with 2 fully clothed women in small room. PV…”Shouldn’t you guys also take off your clothes. You know, to level playing field.” Shanna (laughing)…”Do you know how much trouble we would be in if we did that?” I felt awkward, not used to seeing JV nude in presence of other women.
Shanna gives JV a clean bill of health. For me 2 spots for biopsy…left forehead and right calf. Shanna also uses liquid nitrogen to freeze spots on hands, scalp, legs. Shanna…”I’ll try to push lab work through so if you need plastic surgery, you can have it done before heading north.
JV…”Phil always seems to have basal cells that require removal.”
Shanna…”Phil has CLL and his immune system can’t hold scabbies at bay so he’ll keep developing pre cancerous lesions. Keep coming out here, and I’ll keep zapping them. We’ll cut out those we have to.”
4/10 Becca and family fly into Ft. Myers where they rent a min-van. My left arm is still very sore; I’m still wearing an adult diaper.
4/11 I take 3 bike loops. Dom joins us for breakfast on lanai. Ana soon joins us…water mellon is devoured. Becca enters with 2 small dogs in tow…”Hello Manny, hello Bo,” our 1st sighting of the 2 pooches. We bike ride around complex, meet Aida and Zammie (her Havanese dog) on road. Sandwiches for lunch on lanai. To pool in afternoon. For supper we go to Michelbob’s “Best ribs in America.”
I marvel at how food tastes so
good. For longest time I didn’t enjoy eating. I didn’t enjoy anything.
4/12 We take kids to the Collier County Water Park. We find shade and watch kids slide, play in water. I enjoy scene. “Is this what it feels like to have a life?”
4/13 4 bike loops. Kids go to hard courts. I also end up there. Fun watching kids play tennis. Soph looked good although she is clearly out of shape. She’s not used to Florida heat and humidity. Ana hopes to play school tennis. Soph did not sign up…”Now I wish I had.”
Kids go to Tropical Smoothie for lunch. JV and I share left over pizza at home.
JV and I drive to my Cancer Center appointment with Dr Koslov; Dr Walker had retired. (11)
On road JV asks…”Can we stop at DQ for a milkshake?” “Sure, we have time.”
We share a vanilla shake. Into Cancer Center for lab work. RN takes blood pressure. She looks puzzled. Takes it again and again. PV…”What’s wrong?” “Your BP is 160 over 90, can’t be that high.” “I just had a vanilla shake. Would that make a difference?” She looks at me, shakes head, then puts away BP machine.
RN takes us into small room. Dr. Koslov’s RN enters. “Have we met before? I now have a baby girl.” She asks questions, feels under arms and groin for lymph nodes. She looks at computer screen. “Your blood work is great.”
Dr. Koslov enters. I look at her and immediately realize I’m getting a crush on her. She reminds me of Sandra Bullock. She’s trying to save my life, and her 1st name is Rebecca. I mention I feel better than I have in 2 to 3 years. I think I have gotten over being depressed.
Dr. Koslov…”I doubt if your going into remission has anything to do with depression. They are different things. Exercise, eat healthy, stay socially active. Keep up monthly v B12 shots.”
We drive home in a celebratory mood. PV…”Do you think I should see Dr. Yin again, to try to resolve
my A-fib?” “Don’t do it. Too risky and you’re done. Live the way you are. Isn’t that enough for you?”
4/14 I notice the words “feel good” embedded in text. 1st time I had written that cheery message for 1 year at least.
4/17 I take 7+ loops, and I feel urge to play tennis again. On top margin, “I feel good.” I go to tennis wall and hit for 20.’
4/20 A diaper free night, and the words “Parkinson’s Disease” finally make it into the journal.
Depression is a serious medical condition that can hold you back from what you enjoy (Facebook, 12/9). while no one knows for certain what causes it, experts believe that depression results when certain chemicals in the brain are out of balance. These chemicals, called neurotransmitters, relay messages from one brain cell to another.
Although there is no blood test to diagnose depression, there are
well-developed clinical guidelines used by health care professionals to diagnose major depressive disorder. One of these guidelines, developed by the American Psychiatric Association, is called the DSM-IV®.
According to the DSM-IV, major depressive disorder (or “depression”) is diagnosed when five or more of the following symptoms of depression are present for most of the day, nearly every day for at least 2 weeks. At least one of the symptoms must be either persistent sad or “empty” feelings or loss of interest in activities.
Symptoms of depression
Here is a list of emotional and physical depression symptoms according to the DSM-IV:
- Constant sadness
- Feeling worthless or guilty for no reason
- Loss of interest in favorite activities
- Trouble sleeping
- Low energy or fatigue
- Significant weight change
- Difficulty concentrating
I would test positive for nearly all these symptoms.
4/16 John and Laura Zambrano, and Shari (Laura’s sister) visit WTC. They are Albany friends who retired to Prescott, Arizona. Laura and John don’t have children, and they have enjoyed watching our kids grow up.
4/17 Find I am hyper in mornings, awake by 4:00 AM. PV…”JV, I should mention I’m getting urge to play tennis again. The way I feel, my new diet, makes me feel I could play better tennis than I have for years.”
7 loops on bike, and I could have done more. My strength is coming back. 1 PM, I go pool side to relax, nap on chaise lounge. JV is in pool with her swimming group. They all have those buoyant barbells to work upper body. I call group “bobbing bitches” because they bob up and down while working barbells. A few would prefer being called “bobbing babes.”
4/20 A diaper free night. 1st time in month. JV has appointment with Dr. Wey. “How have you been?” “Busy, been tired, back hurts, kids have been here.” Dr. Wey asks her to walk, move her arms, stomp her feet. He feels her wrists while she moves them. “You have early PD onset. Nothing seems to slow it down. No benefit from coffee. Some people progress slowly others quickly.”
PV…”How long can she stay like this?”
“5 to 10 years. PD is progressive. Stay on your meds. You are doing very well right now.”