Our story is a long one. Unfortunately, many of us have much in common with each other in that regard, don’t we? If you decide to read it, I hope you find ours informative. We have learned far more from people who have/are enduring serious illness than, sometimes, from the health care professionals who often only offer text book definitions of symptoms and side effects. I hope our story helps and informs anyone interested in it. We also welcome any comments or questions from anyone who finds themselves on this unwelcome journey into the ravages of serious illness, either as a patient or caregiver.
We are and will forever be “living life, redefined”, as best we can; not by choice but out of necessity, in order to survive it all with a sense of humor and the deep love we’ve shared in our 40+ years together as husband and wife.
Putting information together for anyone who may be interested in the timeline of my husband’s serious health problems, (although lengthy and complicated), has been part of my personal “therapy” in surviving it all as his caregiver. I’m hoping it can help others who have faced similar patterns of declining health to understand the urgency in addressing some of these same symptoms before things culminate into life threatening situations like the ones we, thankfully, have survived together.
My “About Me” section on this site has more of the emotional ups and downs of it all if you’re at all interested in that as well.
Winter, 2006
My husband started exhibiting both blood and protein loss in urinalysis samples at his yearly physical exams. Sought explanation after increased amounts of both were found in the weeks and months that followed. General practitioner referred him to urology who ordered CT scan of abdomen and kidneys, but only after weeks of literally begging them to do so. Lesions found on one of his kidneys. Urologist was not concerned, even though one of his siblings had died from kidney cancer. He was only agreeable to run repeat scan in six months.
Spring, 2007
Unable to find help, locally, we decided to travel out of state to a regional hospital (Mayo Clinic) for more extensive tests. In addition to the kidney lesion, there was one on his liver as well and an enlarged lymph node present there. Persistent, increased levels of both blood and protein loss on UA tests. Recommended we return home and see urology again. We also asked for a kidney biopsy. We had to pay for this visit ourselves, along with the tests they ran, because it was not covered under our insurance.
Upon returning home, we sought the advice of a second urologist’s opinion who only minimized findings and would not consider biopsy. Suggested medication for enlarged prostate. Decided to seek the care of a different general practitioner.
Summer of 2007
Increased/worsening heavy protein and blood loss in urinalysis tests. Developed episodes of pseudo-pneumonia and ascites. New general practitioner referred my husband to a kidney specialist who informed us he had a kidney disease (unknown type/origin) but would not agree to a biopsy. Prescribed diuretics for fluid retention, statin drug for elevated cholesterol and blood pressure medications.
Fall/Winter 2007
Fluid retention/ascites worsened. Pled with nephrology to consider kidney biopsy. Finally agreed to schedule one; but was delayed for months due to scheduling conflicts at kidney clinic.
January, 2008
Kidney biopsy finally performed after delays and conflicts. Were given the diagnosis of idiopathic (cause unknown), MGN (membranous glomerulonephropathy). New general practitioner refused to explore further evaluation into the possible causes of the disease. Started developing severe back pain over the following week. Sought help from new general practitioner who only ordered an ultrasound and said there was nothing wrong, outside of a pulled muscle. Believe it or not, this "doctor" also suggested having my husband eat a banana every day to help regulate his potassium levels. The whole time, he had been suffering from multiple pulmonary embolii, in excruciating pain. They didn't even offer us a wheelchair to get him to the hospital that adjoined the clinic. I, literally, had to hold him up while walking over to the technician. Because his symptoms only worsened in the next two or three days, we ended up going to the emergency room in the middle of the night. Thankfully, he survived but he was to be given Lovenox stomach injections upon release until blood thinner he was prescribed (Warfarin) stabilized his INR levels. This turned out to be only one of many "nursing" tasks assigned to me over the course of the next several years.
INR was never consistently stable. Severe muscle cramps and anemia followed. We were referred to a different nephrologist who refused, also, to explore the possible causes of this particular kidney disease.
Once diagnosis was made, we pled with oncologists and other specialists to try and find the cause of the kidney disease. The prognosis of dialysis someday being necessary was unacceptable to us. My husband was adamant he would never consent to it. Would rather just let the disease progress and die than endure dialysis of any sort.
I persisted and pled with nephrology to treat the kidney disease. Through my research, I discovered several doctors (some out of the country) who had written a medical paper published in Nephrology journals, that if the disease were treated with oral chemotherapy . . . in many cases the disease could be controlled. There are several causes for MGN. Prostate cancer, kidney cancer, hepatitis, lupus, etc., are a few. If discovered and treated, the kidney disease could be cured. I even went so far as to purchase a text book from the University Medical School and highlighted references made to that effect. I took it with me to our scheduled appointments. Each time, my concerns were dismissed as insignificant, even though one of the authors (a nephrologist in South America) had looked at my husband’s records and wrote back to me in broken English, “There is something terribly wrong with your husband. Don’t give up. He is lucky to have you.” This was one of many reasons I persisted in my quest for the doctors to look more closely at my husband’s failing health.
Eventually, I was able to find a nephrologist willing to treat my husband’s kidney disease with oral chemotherapy (Cytoxan) for 6 months. That treatment resulted in his protein and blood loss in his UA tests to return to normal; but anemia and fluid retention persisted. Liver tests started coming back with concerning/worsening abnormalities which no one could explain.
We, again, decided to find a new general practitioner who would be more open to determining the cause of my husband’s kidney disease. The blood thinners, along with his other medications were continued but his INR remained difficult to consistently stabilize and his anemia and ascites and liver abnormalities only worsened. The oncologist, however, and our new general practitioner became increasingly concerned when my husband’s anemia was not resolved with the oral chemotherapy he had been treated with. His liver tests only continued to worsen.
Drenching night sweats, requiring multiple layers of bedding be changed almost every night for months became harder and harder to tolerate. They persisted, consistently for two to three months.
Spring/Summer, 2009
Health continued to deteriorate with repeated episodes of pseudo pneumonia and abdominal swelling. Pulmonary tests were done to determine if there were any undiagnosed heart or lung conditions he may be suffering from. At the recommendation of our new general practitioner, we sought a consult with cardiologist who, although did not feel there were any coronary issues, did feel as though a return visit to our general doctor was needed, due to the enlargement of my husband’s liver. Our new doctor agreed that we needed to now consult a liver specialist.
Things were showing up on scans and x-rays that were not fully explained or evaluated to our satisfaction. Defining “abnormal” as “normal” was becoming harder and harder to accept or understand.
We made multiple trips to the ER because of fevers and rashes that came and went. Multiple scans done to try and fully evaluate why we were continuing to experience worsening health. Frequent/excessive bowel movements were becoming bothersome. Some days, were in excess of four to five episodes.
Developed high fever (104, after Tylenol) one afternoon, requiring trip to emergency room. Husband was extremely diaphoretic, and vomiting bile all the way to the hospital. Was admitted and treated with antibiotics. Liver biopsy was finally scheduled, but then delayed due to hospital staffing issues. Eventually, rescheduled to next day. Blood thinning medications he had been on had to be adjusted and readjusted, along with a highly accelerated heparin drip due to the scheduling conflicts at the hospital. Husband awoke the night before the biopsy with severe headache and eye pain. I insisted they stop the Heparin drip (as I felt increasing it to three times the dose he had had the day before was causing the head and eye pain.) As soon as they stopped it, the symptoms subsided. The heparin drip was recalculated the next morning and the biopsy was eventually performed. No cirrhosis discovered; although his liver was still slightly enlarged. Cause unknown.
Discharged the next day but developed a fever and second pulmonary embolism a day or two later. After another trip to the ER in the middle of the night, husband was admitted to the hospital. An IVC filter was ordered by cardiology/pulmonary specialist and placed shortly after admission. Fever was resolved. He was scheduled for release the next day but developed a rectus sheath hematoma (massive internal, abdominal bleed) that morning while he was taking a shower. This happened only a week and a half before our youngest daughter’s wedding. We had been hoping his health issues, all through these past months, would be resolved before her big day; but with each “missed” milestone in that planning, leading up to her wedding day, we became more and more fearful he would not be making that special father/daughter walk down the aisle. Those fears were now compounded and replaced with yet another fight for his life.
He was transferred to ICU for evaluation and blood transfusions. Several bags of blood were hung without resolve. Developed severe jaundice. Major organ failure was setting in. With the last bag of blood, we were told surgery would be necessary if the hemorrhaging could not be stopped. Thankfully, the bleeding was controlled with that last bag of blood.
While in ICU, an “expert” gastroenterologist was summoned to examine my husband who informed me he knew what had been wrong with my husband all these years. He said he was convinced he was suffering from Hepatitis C (cause unknown) and that had been the underlying cause for husband’s declining health. He said he believed the Hep C had caused the kidney disease. Once treated, he said, the kidney disease would be cured. This diagnosis, this visit from this “expert”, could have saved my husband years of pain and suffering; medications that had been prescribed (some of which had severe side effects), and countless trips to the hospital. Precious time off from work, being sent to one specialist after another, after begging for appointments with someone (anyone) willing to evaluate things more fully. It was learned that the simple blood test this expert was going to run was one that could have been offered years earlier that would have diagnosed the Hepatitis at an earlier stage before nearly taking his life just a week and half before what should have been one of the most precious moments in our family’s lives. The test they claimed to have run, the screening test (a far inferior test to the one now being considered with him lying in the ICU), when we asked for a complete diagnosis of his condition, missed the Hepatitis that had been ravaging his body for years.
Husband was then transferred back up to general care after two nights in ICU. He was able to walk our daughter down the aisle at her wedding but was extremely weak and jaundiced. To this day, he barely remembers anything about her special day. We found out later from three different prominent lawyers, there was definite medical negligence committed, for certain, but we were unable to sue because of recent changes in our state’s political structure. No one would be held accountable and we would never be able to regain the time and memories for us that our family lost to a system that, at times, places more importance on schedules and cost than on patients’ lives. This was the moment I realized how important it is to become your own, best, advocate for yourself and those you love. This was also, for me, the moment I realized my “faith” in a higher power superseded any religion which taught the belief that any “God” of love had anything to do with inflicting this sort of torment on anyone or that he/she would appear in some sort of cloud or bolt of lightning to rectify it. No, rather, he/she speaks in whispers to guide us toward the knowledge and information we need to do his/her works. Waiting for those answers to miraculously just come to us is a waste of valuable time that can make the difference between life and death. Following my heart, seeking information and knowledge and never giving up is where I have found my “God”. Trusting in your own instincts and listening to them is that higher power’s way of ensuring you the best possible outcome in any situation. Good comes from good, I have learned, and bad comes from bad. It IS that simple. At least for me.
The prescribed treatment for my husband’s Hep C was to have me administer Interferon stomach injections to him for 6 months. Injections could not begin until hematoma was resolved, which delayed treatment for several months.
Fall/Winter, 2009
Treatment for Hep C was begun. Not only had he endured a time of frequent Lovenox stomach injections after the pulmonary emboli he had developed in recent past; but now had to endure another set of frequent/prolonged stomach injections for the hepatitis. It was difficult for both of us, suffering so much physical and emotional pain in the past; but now having to endure more treatments for a disease we would have to overcome that should have been diagnosed years before.
Early, 2010
After hepatitis treatment, all liver tests returned to normal. Kidney disease, also, had been resolved, requiring him to only take a low dose of blood pressure medication to guard against any further kidney damage.
2010 – 2013
Husband returned to reasonably good health, outside of disturbing, frequent bowel movements every day (sometimes up to five). Enlarged prostate/elevated PSA tests needed to be more fully evaluated. Prostate biopsy was not readily offered but upon our request a biopsy was, eventually performed. No malignancy, thankfully, detected; however troubling symptoms persisted.
Around 2015
Husband had increasing difficulty emptying his bladder. New urologist discovered prostate had become so enlarged, a transurethral resection was necessary. Surgery performed and issues with urination resolved. However, frequent bowel movements became more and more bothersome.
Winter, 2016/Spring 2017
Developed persistent, bothersome “itching” on back/ankles.
Summer, 2017
Exhibited strange “rash” on back. Resembled sunburn with slightly raised white “blotches”. General practitioner referred my husband to dermatologist who treated him for a “fungal” infection. Prescribed an anti-fungal shampoo/soap. Seemed to clear MOST of the “infection”, yet itching and “blotches” (although not as apparent), were still present.
Fall/Early Winter, 2017
Noticed abdominal “swelling”/”bloating”, off and on. Loose, frequent bowel movements escalated.
Winter/spring, 2018
Mid-April, abdomen was becoming more and more distended but would sometimes partially resolve.
April 20, 2018
Made evening trip to ER with abdominal pain, bloating and severe abdominal distension. He could not eat. CT scan performed. Results showed noticeable baseball-sized tumor, positioned behind prominent bowel obstruction.
April 21, 2018
Emergency surgery performed to remove tumor. Pathology tests confirmed suspicion of lymphoma.
May 6, 2018
Husband developed infection/fever. Made trip to ER. IV antibiotics administered and was subsequently admitted to the hospital. Upon release, was given oral antibiotics.
May 9, 2018
PET scan performed
May 10, 2018
Met with oncologist to go over PET scan results. Subsequent pathology results confirmed diagnosis. Germinal, Diffuse Large B-Cell, Non-Hodgkin’s Lymphoma. 6 courses of RCHOP chemotherapy to commence upon recovery from surgery. Five enlarged lymph nodes in multiple regions discovered (one in neck; one in chest, near heart; one in his liver; two in his groin) All had high uptake levels noted, placing husband at intermediate “risk”. Largest node was in his liver; thoracic node had the highest level of contrast uptake. Late Stage III / Early Stage IV, due to multiple “regions” affected. Given 60/40 chance of survival.
R-CHOP chemotherapy recommended to begin in two weeks, allowing more time for recovery from surgery/infection. RCHOP chemotherapy to be given every three weeks for a series of 6 treatments, mid-way PET scan to be done after three cycles.
May 17, 2018
Met Oncology Physician’s Assistant to go over procedure involved for portacath placement, to be performed the next day, the 18th, and to discuss the drugs that will be used in the RCHOP drug regimen and possible side effects. LOTS of information, none of it very specific as to what MOST people experience, just very broad generalizations given with the “Everyone is different” comment. That statement, yes, is very true; yet, we discovered SOME of the more common side effects most people see and at what point they see them during treatment would have been much more informative and helpful in understanding what was about to happen to my husband (AND me).
May 18, 2018
Surgical Port placement performed one week before first R-CHOP chemotherapy administered. Procedure went fine. Only encountered some unfortunate incidents with his IV and the nurse we were assigned. Friendly, just not as “professional” or experienced as we had hoped for.
May 24, 2018
First dose of Prednisone (20 mg) taken before heading out to chemo clinic. Lidocaine cream applied at home, over port, one hour before appointment.
Port accessed for the first time, no pain, but with moderate amount of flow difficulty. Eventually, upon flushing port, full access achieved. Lab tests for LDH levels, red and white blood counts showed LDH at 226 (just over “normal”), all other counts normal; mild anemia noted. Disturbing/troubling liver tests showed enzyme levels elevated but liver function was normal. Lower dose of Rituximab ordered due to liver test abnormalities.
First cycle of IV RCHOP drugs given. (See 2nd chemo treatment for complete list decided for each subsequent cycle). Oral Benadryl given first, along with steroid medication (became extremely sleepy). Rituximab given next, which was given at extremely slow drip dose to minimize adverse reaction. Signs of allergic reaction noted (rash on inner arm, red dots and “streaking” on abdomen and rigors (severe body tremors began). Drip halted, IV Benadryl given. Reaction resolved. Rituximab drip restarted, slow rate of dosing decided best. Anti-nausea IV drugs begun, (Emend, Zofran, Dexamethasone), Red-Devil (Adriamycin) pushed through port, followed by Vincristine, then Cytoxan). Length of first chemo visit = almost 9 hours, due to adverse reaction to Rituximab.
Were told to take Zofran, anti-nausea medication, orally every 8 hours (3 x in 24 hour period) for 3 days upon returning home.
Day after (Friday), he said he felt good.
Fatigue for first few days, but was able to return to work with no restrictions.
June 9, 2018
Started noticing some mild pain/soreness in scalp. Hair started “softening” and looking “white”.
June 10, 2018
Large amounts of hair started falling out in bathroom sink. Extremely sad and hard to see.
June 11, 2018
More large amounts of hair loss
June 12, 2018
Decided to shave off most of hair left on his head. Had my hair stylist make a visit to the house to do it. Up until this point, my husband’s emotional strength seemed strong. I felt isolated, as I seemed to be the only one emotionally overwrought by our whole experience these past couple of months. After a bit of a “rift” between us and a couple of days barely speaking to each other, we were both able to give each other that emotional release we both needed and realized we both had needs that had to be discussed and resolved. Mine were/are more emotional and his, obviously, were/are more physical. Talking to each other about both, we decided, was something we both simply HAD to do if we were to survive this.
June 14, 2018
2nd RCHOP chemo treatment. Liver tests much improved; however, white count was only 1.4 (near the threshold of deciding to delay treatment). Treatment was decided to be given but Neulasta (body “On-Pro” device) would need to be added to drug regimen after treatment that day and after each appointment from now on. Dose of Rituximab increased because liver tests were much improved. Decided that prior abnormalities were possibly due to antibiotics given for prior infection but, in looking at results of PET scan again, we suspected that since the largest involved lymph node was in the liver, the main reason was that the lymphoma was at the point where his liver was at greatest threat of becoming severely compromised with the cancer.
Slow Rituximab drip decided best since reaction was noted the first time. Dose increased to standard level, since liver tests were much improved. About the same time ¼ of the way through, another reaction was noted; although, not as severe this time. Drip paused, more Benadryl given. Dose restarted after reaction subsided. All other drugs/doses given as in 1st round.
Neulasta On-Pro explained and applied before leaving chemo clinic.
From this point on, the following chemotherapy regimen was to be followed for the remaining cycles:
Oral PREDNISONE (20 mg), tab taken day of treatment and for next 4 days with breakfast.
LIDOCAINE ointment (2.5%)to be applied over portacath before leaving home (1 hour) before chemo
Chemo treatment:
Pre-treatment, 30 minutes before chemo drugs are given: Intravenous Hydrocortisone Sodium Succinate PF-steroid (Solu-CORTEF), 100 mg over 15 min. w/1,000 Tylenol (two 500 mg tabs) and Intravenous Benadryl (50 mg)
Rituximab, 740 mg, (Titration much slower with Hit 1, 2, 3) #4 and 5, have since been administered at much faster rates, as better tolerance for this drug has been achieved
EMEND (anti-nausea drug which stays in system for 3 days), 150 mg, infused for 30 minutes
(DECARDRON) steroid, 10 mg, AND
(ZOFRAN), anti-nausea, 10 mg hung at the same time for 15 minutes
“RED DEVIL”, (ADRIAMYCIN), 99 mg, IV push over 7-10 minutes
Vincristine (ONCOVIN), 2 mg, for 7-10 minutes
Cyclophosphamide (CYTOXAN), 1,480 for 60 minutes
Neulasta (ON-PRO) applied before we left clinic. 6 mg injects for 45 minutes, 27 hours after device is applied
ZOFRAN, 8 mg dissolvable tabs taken every 8 hours, at home, for 3 days following treatment at clinic, then as needed
Additional medications:
ALLOPURINOL (to reduce uric acid), was begun on May 17th and is taken every day w/evening meal (ordered to take through all six cycles of chemotherapy)
Muconict oral spray for mouth sores. Thankfully, discovered this treatment for mouth sores on the internet before we actually saw any appear. That way, we were able to start using solution right away. This side effect is extremely unpredictable. We didn’t see any until after second treatment. Husband had been using saltwater rinses but this solution, if swabbed directly on the sores, when they first appear . . . will be gone the next day or so. Has been doing both, religiously, every day since first chemo treatment.
June 16, 2018
Saturday after chemo, woke up feeling achy from head to toe. Suspected the Neulasta medication from the night before was to blame. One Tylenol and a couple hours of bedrest cleared it up, for the most part. Appetite was still good and no other real side effects, other than fatigue, were present for the rest of the weekend.
June 23, 2018
Developed fever of 101.1 at 9:50 p.m. Called on-call doctor/nurse. Told to make trip to ER immediately.
Chest X-ray and blood tests/cultures done.
June 25, 2018
12:30 a.m., hospital left voicemail message but message not received until 4:00 a.m. Said one of husband’s blood cultures was positive for infection and we should call clinic when they opened to find out what we were to do. Said the sample could have been “contaminated” but that it could, also, be early sign of infection.
Called clinic and they said to return to ER for another blood draw as soon as we could. When we got to the ER, they questioned us as to why we chose to go there. Told hospital staff we were told to. Repeat cultures drawn. All were negative.
Husband said his abdomen had been crampy the last day or so.
June 26, 2018
Sad he was starting to feel better but that he didn’t feel as good after treatment this time as he had the previous two times.
July 5, 2018
Third RCHOP treatment administered. Neulasta On-Pro boosting white count to just within normal ranges and will be given after each treatment, before leaving chemo clinic. Repeat / half-way point PET scan scheduled for end of the month before 4th treatment.
July 25, 2018
Repeat PET scan performed.
July 26, 2018
PET scan results showed much improvement. Two lymph nodes in groin have been resolved. Remaining three noted on last scan not enlarged any longer; but trace levels of cancer were seen. Doctor confident treatment was working.
4th cycle of treatment administered after discussing general health/side effects of treatment so far with oncologist. Fatigue has definitely been increasing. Becoming more and more anemic. LDH test within normal ranges as last time, but slightly increased from last time but all other lab tests reflect expected results. Faster titration with Rituximab but all other drugs remained the same in dosing/speed of IV drip.
July 27, 2018
Oncologist’s office (Physician’s Assistant) prescribed iron supplement because she felt husband’s iron levels were low; although all were within normal ranges. Vitamin B-12 was three times higher than normal limits but we filled the prescription for the iron.
Within a day or two, husband looked extremely “flushed”, what little hair was left fell out in larger amounts, was “stuffy”, developed more mouth sores than before, and had episode of diarrhea, in spite of the iron supplement.
August 1, 2018
Husband had lots of gas, bloating and cramping. More diarrhea/fever. No appetite. Contacted chemo clinic. Oncologist said to discontinue iron supplement. She had no concerns with husband’s iron levels as they were within normal ranges. Also said she was not concerned with elevated B-12 levels. Fever, at its highest, was 101.1. Decided NOT to consult chemo clinic because of previous confusion/trouble the last time fever was elevated.
Felt frustrated that PA had run these tests and prescribed iron when, now, oncologist said it was not necessary.
August 2, 2018
Decided to stay home from work, because of troubling symptoms. Appetite was a bit better. Fever down.
August 3, 2018
Stayed home again, due to continued side effects. Placed call to chemo care clinic and were advised that the obvious, increased fatigue, etc. was due to chemo drugs having a more cumulative effect. My husband now realizes the difference between simply being tired and actual fatigue. Were told that the greatest risk for infection, etc., was 7 to 10 days after chemo. Told us we, simply, must call if husband’s fever EVER reached the threshold of 100.4, as ANY infection could become life-threatening.
August 4, 2018
Fever much improved. Side effects started to subside.
August 6, 2018
Returned to work but said fatigue was, definitely, getting harder and harder to endure.
August 12, 2018
Were still able to celebrate 40th wedding anniversary; but was bittersweet for us. Unable to travel to Caribbean as had been planned the previous year, due to financial challenges before cancer diagnosis; but, certainly, after. Feeling grateful we had decided to cancel trip before traveling out of the country. Quiet, more private way of celebrating this milestone for sure; but so grateful we were still able to do something together. Had anniversary toast with youngest daughter and son-in-law and then out for a romantic dinner at one of our favorite restaurants. Were even able to have champagne toast (with oncologist’s approval of course).
August 13, 14, 15 2018
Had a few very enjoyable days, feeling much better at the beginning of what would be our two-week summer vacation. Could definitely tell, though, that it was taking much longer to recuperate between chemo treatments.
August 16, 2018
5th RCHOP chemo treatment. Each treatment taking less and less time due to improving tolerance of Rituximab (which had been taking the longest each time). Gray/pale pallor VERY apparent with this fifth treatment. Side effects from Neulasta On-Pro and others noticed from previous treatments were much improved. However, the following 10 days my husband was feeling EXTREMELY fatigued. Found it more and more difficult to do even the simplest of things without feeling weak and exhausted. Were grateful we were vacationing at home and he was able to rest, comfortably. Decided that it would be necessary to take the week off after next chemo treatment. Will need that extra time to recuperate, for sure. Working through all of this was a challenge but one we could not afford to try and meet with last remaining “hit” scheduled for September 6th.
Found it humorous that on Sunday morning, following Thursday’s chemo, my husband was able to laugh at his chemo-induced insomnia the night before. Hardly able to sleep, he decided to just lie there in bed after I had drifted off. Instead of getting up and roaming the halls or watching TV, he chose to lie there and (as he described it), started thinking of words that began with the Letter “P”. (i.e., porpoise, perfect, people . . . you get the idea). After drifting off after a few of those, he said he started thinking of numbers . . . random numbers . . . any number. After doing that, and drifting off for a bit, he woke up and decided to start naming sheep with male names. After doing that for a while, while giggling as he was telling me . . . he decided it was time for “the ladies” . . . naming sheep with female names.
I love this man so . . . for so many reasons . . . one being that he can find the humor in even the most horrible situations. He is, truly, a very special man.
August 26, 2018
Thinking about going back to work tomorrow, after being off for two weeks is always dreadful; but, today I feel guilty about spending part of that time feeling a bit sorry for myself, watching my husband unable to do the things we normally would have been able to do together around the house . . . taking day trips around the area, going to movie theaters . . . you know, the things people usually do if they aren’t living the life of a cancer patient. He tried. But most of the time he was barely able to shower and walk out to the mailbox to get the mail. We were able to do a few things, but our vacation this summer was far different than the one we are usually able to enjoy.
So, tomorrow, we both head off to work until September 6th (Hit #6). We were told the repeat PET scan that we’re hopeful will show no evidence of lymphoma, will be done three weeks after our last treatment. The fear of something still visible on that scan is paralyzing sometimes. What then? The oncologist refuses to discuss any specifics of what that would mean. We’re assuming it would be an automatic stem cell transplant; but my husband has told me he couldn’t even consider it after just finishing up these chemo treatments.
Personally, I would like to find out what our options would be then, NOW. I’m more of a “planner” than my husband and would like to find out more about what a transplant would involve and the success rates of them with the same pathology and history as my husband’s in other cases like his. Will try and prepare for bad news, hoping for good, I suppose. There is just so much involved with plotting our futures, living with the very real threat of relapse. Unable for either of us to retire for a few years yet, having to weigh our financial burdens and obligations into a decision we hope we wouldn’t have to make if those results aren’t the results we hope to see at the end of September is a heavy burden to bear.
Will post more after Hit #6, scheduled for September 6th.
