My Journey with Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma
Monday, February 29, 2016
Mr. Toad's Wild Ride...
First Round of Chemotherapy Completed, Five More to Go: As indicated in my prior post, I commenced chemotherapy for my CLL on Thursday, February 11th and Friday, February 12th - Rituxan and Bendamustine infusions on Thursday, Bendamustine only on Friday. Though I had received four infusions of Rituxan three years earlier without any "immediate" reactions (I did have some delayed reactions after the third infusion), such was not the case this time around. About one-half hour into my infusion, my sinuses closed, I started sneezing and my airway was beginning to close. Cessation of the infusion for a short time, followed by additional treatment of my symptoms, ultimately led to the resumption of the infusion without further drama, with the exception that the infusion took a total of six hours to complete. Both Bendamustine infusions went off without a hitch.
For a couple of days following the infusions I felt completely well, but for a bit more fatigue. As is typical with chemotherapy, nausea followed about 48 hours later, but was well managed by anti-nausea drugs. By Wednesday, of the following week I felt like I'd turned the corner on the nausea train and was regaining an appetite. However, everything took a very dramatic and unexpected turn for the worse.
Missed Clues that were Likely Forewarning of What was to Come: For the few months leading up to commencement of chemotherapy, I had noticed that my blood pressure was consistently higher than normal - at times alarmingly so. Additionally, I found that I was getting winded much more easily and that I experienced periods of rapid, irregular heartbeats. Thinking that I was just an old, fat man that needed to lose some weight and get more exercise, I didn't think much about it at the time. Well, that was a very poor decision indeed!
The Shit-Storm Begins: Though I appeared to have passed through the worst side-effects of the first round of chemotherapy relatively unscathed, by the Wednesday following the infusions, I noticed I was extremely lethargic, had difficulty breathing and that my heart rate was elevated along with a low blood-oxygen level (the joys of having a Samsung smartphone with an application that allows monitoring your vitals). Though I arrived at work as I normally would, two-hours into the day I dropped in on my boss to let her know that I would be leaving for the day as I was felling unwell - her immediate reaction was to offer me a ride home; I guess I really looked pretty bad. I went back up to my office and decided to call my husband Bob to retrieve me. Upon arriving about an hour later, he helped me into the car and we headed in the direction of home; though this quickly changed to a visit to the Emergency Room at UCSF as both he and I could tell that I was deteriorating fairly rapidly.
Upon arrival at UCSF Medical Center's Emergency Room, the desk attendant immediately noted that I was in distress and moved quickly to have me examined as soon as possible. After a short fifteen minute wait the rounds of testing began. Within the course of just an hour or so, my condition declined dramatically as I began spiking fevers of near 103-degrees, had extreme chills that couldn't even be contained with seven heated blankets atop me, a resting heart rate of 135, topped with a blood oxygen level of 28% (yes, you read that correctly - 95%-99% is normal) - people that I know in the medical field are not even sure how I could even be alive with that blood oxygen level! When needing to use the restroom, Bob needed to nearly carry me there and back as quickly as possible before the chills set in again.
Well, after EKGs, X-Rays and a CT Scan (with contrast) of my chest, a small Pulmonary Embolism (blood clot) was found in my right lung. This was the source of all of my distress.
After spending twelve hours in the Emergency Room, I was finally checked in to the hospital and taken to my room at 11 p.m. that evening for what Bob and I thought would be an overnight stay. That stay turned out to be for a total of five days (excluding the day I arrived at the Emergency Room). During this time, my I attached to a twenty-four hour heart monitor, constant blood oxygen measurement, oxygen, and prophylactic antibiotics as the source of my fever could not be definitively determined and no apparent infection was present. Adding more fun to the situation was an extreme reaction I had to the intravenous antibiotic that caused a head-to-toe case of Hives. Though the antibiotic was changed to something I could tolerate, the Hives persisted and were the bane of my existence for the next three days as nothing was effective at reducing the itching.
As Friday turned into Saturday, into Sunday, etc. the doctors continued to work to identify the cause of the clot. Eventually, the conclusion was that I had had the clot prior to chemotherapy and that the effects of the treatment weakened me to the point that a "perfect storm" occurred that caused the symptoms of the embolism to come to center stage. Due to the clot, I am now on twice daily self-injections of the anticoagulant Lovenox indefinitely - my poor belly looks like its been used for target practice!
Yet More Shit Added to the Storm: As all of the other testing was occurring I apparently had a delayed, adverse reaction to the contrast used in the CT Scan of my lungs on Thursday evening. The contrast, along with the stress placed on my kidneys due to the evacuation of Cancer cells due to my recent round of chemotherapy, put extraordinary stress on my kidneys, leading me down the path of potential kidney failure - never a dull moment. My last two days in the hospital were focused upon attempts to restore normal kidney function (which were successful) so that I could be released - I was finally released from the hospital late in the day on Tuesday, February 23rd.
Recovery and Return to Work: Following release from the hospital, I stayed at home to recover for the remainder of last week. After all of the events of the prior two weeks, I found that my energy level continued to wane and recovery time was needed - thankfully I have an understanding, supportive employer. As of today (February 29th) I am back at work and have made it through the day. I'll be off work tomorrow for outpatient surgery to have a port installed below the skin on my chest to permit easier administration of my infusions in the upcoming months. The veins in my arms are "cheering" with relief at this turn of events, as I've developed a bit of scar tissue in my arms in the past two weeks that causes intravenous line insertions to be a bit painful. I'll be back at work to complete the week beginning Wednesday.
Next Round of Chemotherapy: My next round of chemotherapy will occur on Thursday, March 10th and Friday, March 11th. Given the events of the last couple of weeks, I'm hoping that the next five rounds will bring no unanticipated drama! Stay tuned...
Be well...
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