It all began with a back ache.
On Saturday, March 26th, Mom stopped by my house after her ReLiv meeting to say that her upper back & upper left arm were hurting awfully. This, in itself, was odd. Mom was usually in a hurry to get back home unless she was bringing fresh vegetables over -- & Mom was not one to complain. She said the pain was so bad she was up in the night, crying in pain. Mom could tolerate anything. Once she got a stalk jabbed up into her hand while working in the garden & she stuck her whole hand in a bucket of ice water & had Mark pull the stalk out with pliers. Then she set back to work. So for her to come to my house just to say her back hurt was not right. She left & I called my sister to say "this is odd - what's up with Mom?" To which my sister replied "SHE'S HAVING A HEART ATTACK!" and sent me into a panic. I got into my van, followed the highway towards Mom's house, sure I would see an ambulance anywhere along the road -- but she had simply gone home. I called my brother & asked him to locate a blood pressure cuff & come take Mom's bp. It was high, and during the afternoon it rose more, her pain was still high so we took her to St. John's Medical Center ER in Tulsa.
On Friday, Mom had watched FoxNews all day as they covered the wrenching experience of Terri Schiavo & her family. Mom kept busy some of the time playing solitaire on her computer but she had to crane her neck awkwardly to see through her bifocals to both the near computer screen & the far tv screen. Then she went outside to rake leaves in the yard for hours. When she fell asleep it was with her head propped up on her pillow, still watching the news. Somewhere in there she possibly strained her back muscles. That's what she told the ER doctors and -- having determined she wasn't having a heart attack -- what they were willing to accept. They offered her a couple different pain medications, told her check with Dr. Liou, her family doctor in Cleveland, and sent her back home.
The following day was Easter Sunday, 2005, and we decided to go ahead with our plan to get together, switching to Rachael's house so that Mom wouldn't have to cook or clean. Mom felt okay to come and she said Motrin eased her pain enough to cope. The pain in her upper left arm continued for a few days, then eased & resolved. But in a couple of weeks, the pain returned just as severely in the other upper arm, again for a few days. I think it was at this time that Mom did go to see Dr. Liou. He prescribed more pain medication (Motrin helped, Hydrocodone did not) and he also (typical for him) gave her steroids to take. By this time Mom was feeling very, very tired all the time. In retrospect she said she may have been feeling unusually tired for a few months. This developed over the month of April into an extreme fatigue. So extreme that when she was out pulling weeds in the garden, she would lie down in the dirt to rest, pulling weeds from a lying-down position (scaring us to death on more than one occasion). So extreme that although she might be sitting at a chair around the kitchen table, looking like she was resting for a bit, she actually had not moved all day long.
It was about this same time, mid April (maybe 3 weeks after the initial symptoms) that Mom began to experience chin numbness. It started with a tingling in the lower lip, I think, and over a few days extended to cover her entire lower jaw - very similarly to what is felt when dental anesthesia starts to wear off. Mark and Rachael googled numb chin and found frightening statistics, indicating that many people with that symptom had advanced bone cancer. But there were also anecdotal stories of people with numb chins who didn't discover any awful cause and went on with their lives with just that annoying problem.
A week or two after the second episode of arm pain, both of Mom's thighs began to hurt awfully. Again she went to see Dr. Liou, seeking relief and answers. Again she waited and the pain subsided somewhat. She wasn't sleeping well and by the end of April / early May, she had begun having soaking night sweats. On May 11, nearly the entire family & a few friends (an entourage of 30) went to Stillwater to watch Tim receive the Special Olympics of Oklahoma Spirit Award for 2005. That night I realized that Mom needed to be taken care of. Rachael realized that Mom wasn't eating. From that point on one of us was with her, available to help her all the time for the next many long months of this journey.
The next morning, Rachael left her kids with me & went to Cleveland herself to take Mom to see Dr. Liou, to insist that he pay attention to her serious and severe condition, to beg for help. He referred her to a rheumatologist in Tulsa and the earliest appointment Mom could get, despite our pleas, was the following week. At that time Mom went to see Dr. Huettner, the Tulsa rheumatologist. He said he didn't think she had a rheumatoid problem since the prednisone didn't seem to be helping her. He wanted her to stop the prednisone cold and he ordered blood work & CT scans of her head and neck. Although Rachael indicated to him that this was a severe situation, although he watched Mom walk and could surely see that she was nearly unable to traverse his office, the soonest he could see Mom to evaluate & discuss her test results would be two weeks -- already into June! When Mom stop taking the prednisone, her pain level increased. Rachael called Dr. Huettner's office and told the nurse that Mom was getting worse with increasing pain and increasing difficulty walking each day, the nurse said that two weeks was as quickly as they could do anything. Despite our tears, Dr. Huettner's office could not or would not work any faster.
The bloodwork was done the first week, and the doctor's office indicated that it was fairly normal. The sed rate was high but the blood counts were not unusual. The CT scans were done the second week and we carried the films around with us, anticipating another ER visit at any time.
For Memorial Day, 2005, Mom's extended family was having their every-3-year get-together at the Bohemian Hall near Ceres, OK. Mom had planned to be one of the organizers but as she got more sick, she began to simply hope to attend. On the Friday before Memorial Day, Mom had me drive her to Osage to place flowers on Grace and Clarence's gravesites then on Saturday I took her to Perry to set out flowers for Lila, Grandma Katie, Grandpa Joe & Jimmy before going to the Bohemian Hall. I was so afraid she would collapse, even walking around the Bohemian Cemetery; it was more walking around than she had done in a month, just to go from one grave to the next. Mom (Linda, 60) dx DLBC IVb 6/05 symptoms: extreme fatigue (duration 2mo), transient extreme bone pain in arms & legs (1mo) difficulty focusing, double vision, worsening (5+ days) hospitalized with extremely low RBC, WBC & platelets dx=DLBC IVb extensive marrow involvement; nodes, liver & spleen enlarged; bone scan highlighted abnormal uptake in both humerus (upper arm) bones, in 4 vertebra, & in the knees; CNS symptoms & thickened dura so presumed CNS involvement (but not confirmed by pathology) CHOPR x6 & intrathecal depocyte 6-9/05 remission achieved but very high risk of relapse (IPI=5) 10/05 SCT proposed but doctors & insurance company wouldn't work together new dr suggests "bridge" CHOPR 12/05 raging shingles & gangrenous gallbladder 12/25/05 hospitalized, gallbladder removed, IV acyclovir pre-SCT scans reveal brain tumor, assumed NHL 1/6/06 dexamethasone & radiation therapy x13 1/06 scans show tumor & swelling reduced 2/2/06 pre-SCT testing continues 2/06 cardiac function, pulmonary function CTs, body scan complete blood work-up hospitalized for debilitating weakness 3/1/06 CT shows increased swelling in brain, steroid re-prescribed hospitalized for debilitating weakness 3/14/06 CT shows swelling not abated with steroid MRI & body CTs show no return of NHL in bones, substantial growth of brain tumor, 3/20/06 dr says treatments are not effective at this point, refers to hospice 3/22/06 caring for Mom at home until her death 4/9/06 For now, I'm just going to copy over the text from the LindaKesnerFund website, I do intend to write out the experience more fully, but right now it's still a bit too hard to go back through it all.
In early June of 2005, Linda Kesner—mother of 8, grandmother of 14 and wife of 38 years—was taken to St. Francis Hospital in Tulsa, critically ill and suffering from an unknown ailment. After a battery of tests, it was determined that she had advanced aggressive Non-Hodgkin’s lymphoma. The final diagnosis was rated as a stage IVB Diffuse Large B-Cell Lymphoma, with central nervous system involvement.
Linda began an aggressive chemotherapy treatment (CHOP-R) in order to slow the advance of the disease. The family was informed that the current survival rate for patients at this advanced stage of the disease was below 30%. Despite these odds, Linda, her family and friends chose to hope when little hope was given.
Thankfully, in late July Linda’s prognosis was updated—we were notified that the cancer was responding usually well to treatment and that remission was expected by late October of 2005.
Unfortunately, we were also informed that Linda’s chances of total recovery and survival from this stage of the disease were approximately 20% unless she had a blood stem cell transplant (SCT). The transplant specialist, Dr. Charles Strnad, regularly performs stem-cell transplants in Tulsa and tentatively accepted Linda as a good candidate for the procedure (pending the family obtaining funding for the procedure). Dr. Strnad believed the transplant would give Linda an approximately 80% chance of full recovery. Dr. Strnad informed us that time was critical and he would like to perform the transplant as soon as possible. The estimated costs for this transplant done on an outpatient basis would exceed $80,000 but the family's insurance will be exhausted at $50,000. Additionally, the family's insurance did not cover Linda's final chemotherapy treatment nor her post-treatment testing due to plan pay-out limitations then set at $150,000 per year.
I will extol You, my God, O King; and I will bless Your name forever and ever. Every day I will bless You, and I will praise Your name forever and ever.
________________________________________ Past Updates:
As of Nov 8th: The insurance trustees decided to raise the 2005 insurance limit, giving Linda additional $50,000 for medical expenses this year. They also agreed to pay for the stem-cell transplant since it is less costly to them than another round of chemotherapy. Our expectation is that Linda will still need between $25-50,000 to pay for medical treatment that insurance has not or will not cover because of their limited annual payout.
As of Dec 7th: Linda received another chemotherapy treatment to "hold her over" until the beginning of 2006. We have changed doctors and the new specialist at OU has tentatively scheduled Linda to begin preparations for a stem cell transplant in early January. We are praying that the insurance will still cover the procedure, now planned at a different facility and as an inpatient procedure.
As of Jan 18th, 2006: over $17,000 has been raised in the effort to help Linda conquer lymphoma! The family expresses thanks beyond measure & praise to God from whom all blessings flow!
As of January 26th: When pre-transplant testing was done in early January, Linda’s MRI showed swelling and a lymphoma lesion on her brain. Thirteen sessions of fractionated radiation were begun, along with steroid treatment. Linda is having serious side effects of the tumor and swelling but these symptoms have begun lessening and we’re all very hopeful that the treatment will be completely effective. Once this treatment is completed in early February, Linda will again be preparing for the stem-cell transplant.