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Aug 21, 2018 Latest post:
Dec 13, 2018
Jacob’s Story (told from a mother’s perspective)
Back pain. Everyone asks me, where did it all start for Jacob…the answer is back pain.
When someone gets cancer, family, friends, neighbors, workmates, the grocery store clerk, the UPS guy, EVERYONE wants to know what the first sign was that something was wrong. They also want to know numerous other pieces of information - which we are glad to tell...and by using this site, we can share his journey.
So begins his story:
Jacob works for Breakthru Beverage in sales development which requires a lot of physical work. He also works for Uptown Social CHS, at first as a bar back, now as a bartender. He first complained of back pain after working the opening of Uptown during Bridge Run weekend, but that kind of settled down. As his job with Breakthru began, he again complained about lower back issues... we just assumed he had aggravated an already "tired" back. Progressively over a couple of months, the pain just became more intense. He tried massage, chiropractors, cryotherapy, exercise, rest...nothing seemed to help, leading him to see his doctor. Thinking he may have kidney stones, a CT was ordered. Scheduling this was an issue - the computer system at the hospital was down - after almost a week, a great deal of pain and a “minute clinic” visit (nothing obvious), our GI doc, Dr. Sidney Smith, scheduled it at their facility. This, thankfully, was facilitated by my sister-in-law, who knew how bad Jacob was feeling. Ten minutes after leaving the office from that test, my sister-in-law Julie had to call and break the news (I know how hard this call had to have been for her). The CT results were not what we expected - it reported that he had suspicious lymph nodes that suggested a lymphoma and/or metastasis. He had three specific masses that were in his lower, back and abdomen (two mesenteric and one aortic). To say that I almost wrecked the car was an understatement. Jacob and I were both blown away. I’m sure that I didn’t’ run any lights or was a danger to anyone on that drive home but I certainly don’t remember much other than holding Jacob’s hand for the rest of the ride home. Dr. Smith called Jacob’s Internist, Dr. Todd, and Dr. Todd called us to say he had booked an appointment for us to see an oncologist, Dr. Brian Lingerfelt with Charleston Hematology Oncology for the very next morning.
Morning came, as well as a torrential flood, causing a grueling hour and forty-five minute ride to Dr. Lingerfelt East Cooper office. This was one of the longest rides of our lives. After quickly handling paperwork and blood work, we were directed to an exam room where Dr. Lingerfelt introduced himself to Jacob, myself and my husband Kevin. A calm, pleasant, kind personality, he led us through the discussion as to how we were going to find a diagnosis. Jacob had, the previous night, taken “inventory” (his words) and found an issue with one of his testicles, which after exam, Dr. Lingerfelt found as well. After prescribing pain and nausea medications (the pain was still awful), he sent us for a testicular ultrasound and an appointment with Urologist Dr. Francie James. Luckily, we were able to do this that same Friday afternoon. A cyst was found via ultrasound but no actual mass, as confirmed by Dr. James. She suggested, as did Dr. Lingerfelt, that both the bloodwork and a PET Scan would help determine the diagnosis. She mentioned that even though there was no mass felt or seen by the ultrasounds, that the PET scan would show if the tumor had been there but had “burned itself out”. Jacob’s question to Dr. James was “So are we trying to decide IF I have cancer or WHAT kind of cancer do I have?”, to which she answered, “What”. It sounds strange, but i left feeling thankful to at least have the knowledge of what we were dealing with vs spending the weekend wondering. It gave us time to talk to family and close friends so that we could be prepared and have support over the coming weeks.
In short version, the next week brought two ER visits for constant pain, lab work, a PET scan, a CT guided needle biopsy and a visit to a fertility clinic arranged by a nurse friend of mine (yes, future grandchildren are “on ice” for now). All of this lead to the diagnosis of Embryonal Carcinoma (a germ cell tumor), a form of testicular cancer. It’s pretty uncommon and a little hard to understand but it’s the one that Lance Armstrong had and survived. Jacob’s cancer had bypassed the testicle (it can do that) and thankfully because of that, there was no need for surgery. It had, however, affected his lymph nodes, liver and lungs. The largest tumor (the size of a cantaloupe) was the source of the pain they thought, as it pushed on a nerve in his lower back. The pain put us back in the ER for a third time - no matter what we did, we could not keep it in check, even with powerful meds being given every two hours with no real relief. Finally, and thankfully he was admitted to Roper. An MRI was ordered and thankfully showed no brain involvement (Lance Armstrong did have brain lesions) so that was a HUGE relief. The decision was to start his chemo right away so that hopefully it would affect the cancer and help him to get some pain relief. Within our network of friends, we basically did second opinions by emails and texts and all agreed within hours. Jacob’s ex-boss and friend, Joe Schofield, sits on the Oncology Advisory Board for Greenville Hospital System and had access to Oncologists/Urologists there. Long-time friend Dr. Kim Davis Livingston, as well as Jo Todd who works in Radiation Oncology (and her team of doctors) gave thoughts from MUSC. Dr. James Hayes (my sister-in-law’s father) also gave us a great source of comfort by reviewing what was going on as well as Dr. Smith from Charleston GI and Dr. Shannon Honney from Roper as well to back us up. A regimen of BEP (Bleomycin, Etoposide, and Cisplatin) was decided on and we went for it that very same day with me, his dad, his brothers and his best friends by his side. Dr. Lingerfelt thought that the regimen would give some relief by day three or so...and so it did. On that Wednesday, Jacob finally was without heavy pain meds for the first time in fifteen days. Hallelujah! Thank goodness for chemo/nausea meds, sleep, great nurses on Roper 5-South (Anna Leigh and Tripp especially), a ton of laughter, a number of milk shakes, his brothers and many family and friends by his side, he went home after a five day stay...in good humor and without pain. We were so thankful! (Did I mention that we saw a rainbow every single day he was in the hospital?) The following week was full: hearing screening, Bleomycin infusion, lung studies (PFTs), a day of rest and ended with Jacob having a port placed.
The plan from that point was that Jacob would do a week on (chemo) and two weeks off. His first week in each round would consist of five straight days of four-five hour long infusions of BEP (the Monday begins with a doctor appointment and labs to be sure he’s ready for chemo). The following two weeks would only consist of an infusion of Bleomycin each Tuesday. Each three-week session is considered a round, and he will do four rounds total. After the entire course of therapy, they will do another PET scan, probably a MRI of the brain and labs to see the results. We are ready to get to that point and have them come back clear so that he can move on with life!
Jacob is handling this new “normal” like a champ! We are blown away by his attitude, his hashtags, #CANTBREAKJAKE and #JACOBSTRONG, his Facebook posts that have described what he is going through, the video of support from Clemson’s Dabo Swinney, his brothers, our unbelievably supportive family, his friends, our friends, the doctors, the nurses, neighbors and community members. The number of cards, gifts, custom t-shirts, arm bands, texts, Instagram posts, Facebook posts, phone calls and messages have been overwhelming, comforting and downright unbelievable! Offers of meals, cleaning, driving, grocery buying, dog-care, laundry duties, yard work and shopping have come from every direction. Jacob’s friends at Uptown Social CHS have planned a fundraiser for him - donations for that coming from Uptown, his employer Breakthru Beverage, Tried and True, as well as others, and we cannot say thank you enough.
I write this as we sit for the first day of Round 2 (it has taken this long to get to this done). Jacob went into this round feeling, in his words, better than he has in three to four months. Last week was a good week for him. It was filled with sunshine, fresh air, hunting (he scored a big 8-point buck on Saturday), visits with family and many friends, a lot of food (he was a bottomless pit at some points) and always a great amount of wit and humor. As a mom, I am so thankful for that - when he smiles we all smile. To add to this, Jacob’s grandmother had major surgery the day after Jacob’s diagnosis. She, thankfully, continues to improve and they both seem to find strength from each other. The blessing in her illness (yes there can be blessings) is that family gathered on the night of her surgery - this gathering of brothers, aunts, uncles, cousins and family helped Jacob too (and I think each of them as well). My list of things of things to be thankful for is long...but my words for all that support us are short: From the bottom of my heart, thank you.
Keep Jacob, his brothers, our large family, our medical team, and countless others, like him, trying to kick cancer’s ass in your thoughts and prayers! We are certainly feeling the LOVE from every direction. xoxo Kristin