This page contains the latest information about my journey fighting cancer. Please use this to follow my progress.
Sept 19, 2019 2:00pm (Dermatologist, cancel if no new issues)
Sept 06, 2019 General Update
– on prescription for Vit D, it was very low
– on a statin (for cholesterol)
– function has increased last 4 weeks (went from 1% to 3%)
– sleep aid prescription is working! Sleeping 6+ hrs straight (before it was 2 – 3 hours sleep, 3 hours toss and turn, 2 – 3 hours sleep).
– Issues with fatigue are significantly lower (thank goodness!)
Sept 06, 2019 Physical Therapy Evaluation
– will be on twice per week therapy schedule
– current function (mobility and balance) very low (3%)
Aug 22 Comments
– bone damage continues to heal slowly, I am able to walk unaided at little every day now
Aug 15, 2019 Port Removal
– Port removed!
Jul 29 2019 – Oncologist
– Bone Marrow Biopsy Results are CLEAN!
– Primary concern now is physical recovery
Jul 22 2019 – Oncologist
– Bone Marrow Biopsy (remission assurance test)
Jul 17 2019 – Oncologist
– Survivorship meeting
– 6 to 12 mths for fatigue to improve
– Chemo dose was high, need to watch for heart & bladder damage
– Physical therapy being reconsidered
Tuesday, June 25 2019 – Oncologist
– bone healing progressing faster than expected
– physical therapy not needed (better than expected progress)
– 3 months for chemo recovery, 12 – 18 months for nerves/full-strength
– Oncologist is optimistic, hoping for 70+% function recovery!
Thursday, June 13, 2019 – PET Scan – 12:45 (Salmon Creek)
– PET Scan complete
– getting stronger. walking unaided at least a few steps every day
Tues, May 21, 2019 – Chemo #7 of 6 (Compass Oncology)
– last chemo – R only. (this is the make-up for the mess-up)
Sat, May 18, 2019 – Update
– bad chemo day. Haven’t made it out of bed. Nausea, body aches, shakiness, hot flashes, cold flashes and the emotional roller coaster. Ugh.
Tues, April 30, 2019 – Chemo #6 of 6 (Compass Oncology)
– last chemo – ALMOST
Sun, April 21, 2019 – General Update
– chemo affects are stronger this time and lasting longer. Leg pain is much higher and hasn’t backed off any yet. Have had mouth sores for 6 days making it difficult to eat. GI track has been very unhappy. However, all minor irritants in the big picture of things. We continue to believe my general sense of improved overall health indicates the chemo is doing what it’s supposed to!
Tues, April 9, 2019 – Chemo #5 of 6 (Compass Oncology)
Wed, March 20, 2019 2:30 – (Vancouver Clinic – Dermatologist)
– Review abdomen injury biopsy results and care plan
– Wrong chemo drug was injected…
Mon, Mar 19, 2019 – Chemo #4 of 6 (Compass Oncology)
Tues, March 5, 2019 – (Vancouver Clinic – Dermatologist)
– Took large biopsy of inflamed area
Mon, March 4, 2019 – (Compass Oncology)
– Have reaction to shot from Chemo, had to go in to doctor
– Hard, red spot on lower abdomen. Scheduled emergency dermatology appointment.
– Possible incorrect med or delivery method. Biopsy should figure it out.
Mon, Feb 25, 2019 – Chemo #3 (Compass Oncology)
– Leah is going with me!
– my legs continually feel better! This gives me much hope!
– note: learned long-term affects from extensive bone damage will leave scar tissue, some holes, and dead spots. Some physical limitations expected.
Wed, Feb 20, 2019 – Rebound Neurosurgery
– 1:40 everything good. All done with Neurosurgery!
Tues, Feb 19, 2019 – IMPORTANT MILESTONE
– leg pain is lessening. I can hardly believe it.
Wed, Feb 13, 2019 – Blood Work, PA Check
– 12:45 standard blood work check
– counts are great (confirmed – 6 chemo sessions total. 2 are done, 4 to go)
Mon, Feb 4, 2019 – Chemo #2 (Compass Oncology)
– weather held off. Got treatment, no issues
– still battling bone pain. HAIR is FALLING OUT 🙂
Wed, Jan 31, 2019 – Call in to Triage
– Leg pain has gotten worse instead of better – fell twice on steps
– Put me back on Dexamethasone daily (4mg 2x)
– Noticed reduction in leg pain already
Fri, Jan 25, 2019 – Blood work (Compass Oncology)
– 11:15 lab, 11:45 Office Visit
– White counts are low (as expected). No other issues.
Thurs, Jan 17, 2019 – Add Port for Future Chemo Treatments
– add port for future chemo treatments (9am – Legacy Salmon Creek)
– overall feeling good (tired). No substantive issues from the chemo
– COMPLETED. No problems. Resting at home now…
CONFIRMED – Tues, Jan 15th, 2019 – Finish First R-CHOP Chemo Treatment
– FIRST CHEMO TREATMENT COMPLETE (next one in 3 weeks)
– start P (prednisolone pills) in am,l receive CHO via IV at 1:30
– no issues (but boy am I tired tonight…)
– (note – future treatments will take less than 2 hours)
CONFIRMED – Mon, Jan 14th, 2019 – First R-CHOP Chemo Treatment
– got the R from my treatment (R-CHOP) today. NO ISSUES!
Thurs Jan 10, 2019 – Echo cardiogram
– echo cardiogram at 7am (ugh) in Vancouver (done!)
Tues Jan 8, 2019 -Rebound Neurosurgeon Checkup
– 3pm followup from back surgery
Fri Jan 04, 2019 – Oncologist Appointment – Treatment Plan
– there are NO tumors anywhere
– the lymphoma is bone marrow and bone only
– treatment is chemo-only, every three weeks by IV for 4 months
– survival rate is 50% – 70%
Thurs Jan 3, 2019 – PET Scan Legacy Salmon Creek – Establish Baseline for Assessing Treatment Progress
– the 9am PET Scan at Legacy Salmon Creek did take place
– however, it is now being used for my baseline to evaluate treatment (rather than find a biopsy location – we’re past that)!
– “chill waves” have stopped and back incision pain is finally easing-up
– I walked SIX STEPS without the walker or ANY kind of assistance today (first time in 3 months)
Wed January 2, 2019 – First Treatment Step Started – Back on Steroid!
– started back on steroid Wed
– recovery is more than a bit up and down so far (pain, chills)
Sun Dec 30, 2018 – Biopsy Results – PRIMARY FOUND!
– Discharge DR from Legacy Hospital informed us the biopsy is successful!
– Cancer is large cell aggressive b-cell lymphoma (with other words I didn’t get)
– Next week it will be time to start talking TREATMENT PLAN!!!!
Thurs Dec 27, 2018 – Released from Hospital!
– released at noon
– it is amazing. Over 90% of the leg pain in both legs is gone
– still many positions/movements do cause pain so not perfect (yet)
– (no standing pain, very little sitting/lying-down pain. It brings tears to my eyes every-time I think of it, I have lived with that terrible pain for so long…)
Tues Dec 24, 2018 (Christmas Eve) – Emergency Spinal Surgery
– surgery started at 1:00pm at Legacy, Salmon Creek
– surgery ran 4 hours 41 minutes, 250% longer than estimated
– damage was far more extensive and complicated than expected
– L3 through L5 canals cleaned and widened
– tumor was removed and if cancer (+ alive) could exact-type my primary
Thurs Dec 20, 2018 – Legacy ER then Hospital
– Left leg suddenly has new pain, more intense than right
– Onologist orders us to ER
– ER CAT Scan – New fracture pinching hard onto spinal nerve
– Emergency surgery required
– Monday earliest day the full desired team available
– Placed on emergency watch over weekend in case of further fracture
Sat Dec 15, 2018 – Social Security
– SS disability application has been approved (it was fast-tracked through with the compassionate care program). Starts in Jan (first income since July)
Tues Dec 11, 2018 – Oncologist Palliative Care Appointment
– appt. with M. Dupree – oncologist office – to review palliative care
– increased baseline to better control pain. Wed comfort level much better
Tues Dec 4, 2018 – Hospitalized
– admitted to hospital for pain management. Oncologist and hospital palliative teams coordinating pain management plan
– determined baseline is needed so I am now on extended release morphine
– control poor Tues and Wed. Had morphine IV multiple times when things got out of hand
– stabilized Wed evening (last IV at 7pm)
– got to come home Fri morning after 36 hours without a pain crisis
Monday Dec 3, 2018
– Update. Had to call 911 early morning. Pain at L4 (fractured vertebrae) became unbearable. Required IV pain meds to get under control at ER.
– (first time in an ambulance – not that impressed although EMTs were awesome.)
Monday Dec 3, 2018
– have been placed in palliative care due to advanced stage of things and pain levels
– it has really become difficult. Pain levels are out the roof (near kidney stone passing level). I sleep a lot between pain bouts.
– mobility is pretty much gone
– they are increasing pain medication to try and ease things
– trying to remain optimistic as best I can
– will update when anything significant happens
Friday Nov 30, 2018 Oncologist Update
– Ok, this is an even slower process than we realized
– if the lymphoma is aggressive we should be able to see new activity in 3 or 4 weeks
– so next activity will be imaging towards the end of the year
– interestingly, aggressive lymphoma (most likely what I have) responds to treatment far better than non-aggressive
– non-aggressive could make identification extremely problematic so hoping things don’t go there
– I’m off the steroid that was kicking the lymphoma so comfort level is degraded and I’m to expect it to get worse
– sleeping quite a bit during the day now (I get tired very easy)
– thanks to everyone for keeping me in your thoughts!
Kidney Stone? Really?
– spent a couple hours in ER last night
– I am passing a kidney stone
WE KNOW THE PRIMARY CANCER GROUP… (Tuesday Nov 13, 2018)
– my primary cancer GROUP is b-cell lymphoma
– it’s test slide was filled with dead cancer cells
– however, dead cells only tell the group
– so must continue backing off steroid! (take about a month)
– get live cancer cells when cancer kicks back in
– then we get to start TREATMENT!
Tuesday Nov 13, 2018 – Bone-Marrow Results – Medication Rebalance
– Review bone-marrow results at 11:00 am
– Review Pain and Medication Management (Nurse Practitioner) at 2pm
– Steroid stop? Change pain medications to cover for steroid?
Monday Nov 5th, 2018 – Bone Marrow Biopsy
– Bone marrow biopsy is next to check blood born diseases (multiple myeloma, lymphoma, others)
– Completed. All desired samples collected. 5 – 7 days pathology processing.
NOTE – Overall doctors are positive. I’ve stabilized far better than expected without any real treatment yet, but that gives us more time to make sure we get this right because we probably only get one shot at it. If we still don’t learn what we need to know the next step being considered is exploratory surgery of some kind but we’re quite to that point yet. It is tiring working through this but I have no doubt we are taking the right approach.
Tuesday Oct 30, 2018 – General Update
– Everyone is frustrated. Nothing we seem to do gives us the hard data to get a proper diagnosis in place so we can start treatment. As it is, this leaves me focused primarily on trying to retain as much strength as possible to keep hanging on until we can take real action. One of the local labs is working with the University of Washington State to try and extract cancer cells from a previous biopsy with special techniques and equipment. It’s like a twilight zone episode…. but we will eventually find the primary and treat me in the most holistic manner possible for the best outcome.
Tuesday Oct 30, 2018 – Oncology Review
– Dr. Brouns and team – 4:00pm
– PET Scan did not detect any cancer or identify new biopsy target
– Bone marrow biopsy is next to check blood born diseases (multiple melonia, lymphoma, others)
Wednesday Oct 23, 2018 – PET Scan
– in Portland (11am – long day on this one – several hour test)
Thursday Oct 18, 2018 – Oncology Review
– Dr. Brouns and team – 10am
– Well, what a day.
– Cutting-back on Dexamethasone, it is known to “hide” lymphoma and/or multiple myeloma. Both remain high on the list
– However, still need that primary so reducing Dex and adding in more tests.
– we just have to find out what we’re dealing before we take real action….
Wednesday Oct 17, 2018 – SPINE SURGERY
– SURGERY SUSPENDED
– Target mass moved.
– Review with oncology team tomorrow.
Tuesday Oct 16, 2018 – MRI
– Hi-resolution MRI completed for Neurosurgery
Friday Oct 12, 2018 – First Neurosurgery Appointment
– Dr. Le (Rebound)
– 2nd Biopsy null (ugh). Next target is sample from spine.
Tuesday Oct 9, 2018 – Bone Scan
– Bone Scan completed
– Femur x-rays
Monday Oct 8, 2018 – 2nd Biopsy
– Peace Health
– sample taken. This unit has onsite pathology to confirm successful cancer cell collection…
Friday Oct 5, 2018 – First Radiation Oncology Appointment
– Meet with Dr. Gotkowitz Radiation Oncology (Compass Oncology). Found out a good bit of additional detail from her
– Final imaging results (MRI, CT) indicate bone cancer from left shoulder down to right femur
– Working to schedule full bone scan to get complete picture, multiple areas MRI/CT don’t handle
– Identified one possible suspect for primary – multiple myeloma (blood cancer)
– Gave blood for multiple myeloma test (I will update this page when I get the results next week)
– Still working to get 2nd biopsy done. Potential impact to treatment plan is important
– Went through full radiation therapy prep so we can start therapy quick if we learn a bit more
– Neurosurgeon appointment scheduled (almost certain to require some spinal surgery at some point)
Oct 2, 2018 – Supposed to get pathology report and hopefully a treatment plan.
– Biopsy failed to capture cancer cells so no pathology report and no primary cancer identified
– Being scheduled for another biopsy this week
– However, cancer in bone is there and I have a Friday am appointment with the Radiation Oncologist for likely start of treatment on L4.
– Unfortunate situation but it is what it is…
Sept 23, 2018 – Finally got bad enough to go to ER.
– Had xray of low back
– then had 2 hours in MRI to figure out what they found on the xray
– Cancer throughout spine, L4 vertebrate fractured, unknown primary cancer type
– Blood and CT Scans show nothing. Waiting for Pathology Report this coming Tuesday
– Still figuring things out, no treatment started yet
– On steroids to manage pain
– Dr. Matthew Brouns is now my lead Oncologist (Compass Oncology)
Aug 10, 2018 – Steroids out. All pain/issues back in full force. Another shot and more predinsone to make to WA
Aug 6, 2018 – Left arm went numb, Right leg still almost unusable (leg bad for months). Received steroid shot, prednisone, meloxicam and flexeril.
– leg pain becoming intolerable
– Employer committed suicide, company is out-of-business
– No income and no insurance
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