Having surgery is easy part. The problems start post hospital stay when arrive at your car door from a wheelchair ride at the hospital.
If the surgery was severe enough to require a cast then the orders are "no load on the operated leg for at least 2 weeks." Once the bone has sufficiently healed the cast will be removed and traded for a protective boot to immobilize the foot. At the end of 6 weeks it will be checked again for healing and after 10 the boot should come off.
Pre-surgery actions required to minimize risk:
1. Follow the hospitals directions. No Motrin/Ibuprofen. No Drepreynl. No Aspirin. Tylenol ok.
2. No food 12 hours ahead of surgery...
3. Drink plenty of water to avoid dehydration and prop up you veins!
4. Get blood work done at least 4 days before...same with other tests.
5. Anti-biotic soap shower the night before and the morning of surgery. Trim toe nails and clean under the nails.
6. Shave the leg before bathing.
Prepare Living Quarters:
1. Avoid going up and down stairs until the cast comes off.
2. Get a cart designed to assist movement (3 wheels). Much safer than crutches or walker.
3. Rent hospital bed, toilet assist/rails, bed tray for meals, reading remotes, etc..
4. Set up room for bed, cart, TV, Games, tray.
5. Set up bathroom with soap, toothbrush/paste, combs, toilet extension or cart with arms for toilet.
6. wear lose fitting clothes to hospital, take a pair of very loose fitting shorts for day of surgery.
7. Rent a ramp for house entrance.
8. Have a pair of crutches for short trips not requiring cart.
9. Near the bed have a bed pan/jar or something for emergencies. Also have a barf jar close by...there won't be any way to sprint to the toilet.
10. Have you pain meds close by and follow directions!
11. Reading material, Ipad, Iphone, extension cords.
12. Laptop table...surge protector.
13. Prepare plastic bag to wrap around cast for bathing purposes.
After you're home:
1. Drink plenty of water
2. Try to move (without pain because pain meds are covering lots of pain.)...get an exercise band for upper body. Roll the shoulders and neck. Self massage to stimulate blood flow to leg...but without pain.
3. Follow rehab instructions.
Saturday, July 9, 2011
Tuesday, June 21, 2011
Working with Laura
A PHD physical therapist, trainer, palates and spinning instructor, martial artist, triathlete has moved back to Kalamazoo. I spent 2 hours with her on June 13 to discuss various aches, pains, and injuries.
Her diagnosis: my foot and back issues are mainly posture. I tend to slouch forward putting more pressure on my toes. This explains my massive calves as they and the hip flexors work hard to compensate for weak glutes. My central core is weak versus my lower core. Suggested using weigh machine that pivots side to side. Did this and cause my back some remorse!
She wants me to work the glutes by sitting in a chair and raising up by pushing down through my heels keeping feet width of shoulders. Practice lifting chest and holding for one minute while breathing deep into the diaphram. Strengthen inner thigh by putting yamana ball between legs a squeeze while sitting in chair. Do shoulder stretch per diagram...
Actually found this stretch on line. Supposed to work better than other methods for Costochondritis. Hold stretch for 30 seconds while keeping chin up and taking in deep breaths. Repeat every 1-1 1/2 hours 3 sets per time. Repeat until chest is better.
Also suggested is a crawl keeping feet and hands flat on the ground. This is difficult with my chest and back, but will do later. Suggested a fast walk for cardio...doesn't work on foot.... Says Grade 3 takes 3-6 weeks to heal. I'm on week 3.
She said to do leg presses and hamstring exersises until I can get back on the bike.
Her diagnosis: my foot and back issues are mainly posture. I tend to slouch forward putting more pressure on my toes. This explains my massive calves as they and the hip flexors work hard to compensate for weak glutes. My central core is weak versus my lower core. Suggested using weigh machine that pivots side to side. Did this and cause my back some remorse!
She wants me to work the glutes by sitting in a chair and raising up by pushing down through my heels keeping feet width of shoulders. Practice lifting chest and holding for one minute while breathing deep into the diaphram. Strengthen inner thigh by putting yamana ball between legs a squeeze while sitting in chair. Do shoulder stretch per diagram...
Actually found this stretch on line. Supposed to work better than other methods for Costochondritis. Hold stretch for 30 seconds while keeping chin up and taking in deep breaths. Repeat every 1-1 1/2 hours 3 sets per time. Repeat until chest is better.
Also suggested is a crawl keeping feet and hands flat on the ground. This is difficult with my chest and back, but will do later. Suggested a fast walk for cardio...doesn't work on foot.... Says Grade 3 takes 3-6 weeks to heal. I'm on week 3.
She said to do leg presses and hamstring exersises until I can get back on the bike.
Saturday, May 7, 2011
Give me some rope!
"Give me some rope I'm coming loose" is from the song "Rope" by the Foo Fighters. I can relate!
So what the hell is going on? Here's the complete list, 1. rib cage left side under arm pit, 2. Left wrist, 3. Middle finger right hand, 4. top of right foot, 5. spine tender at t-10-11, 6. Sternum bruised. Besides that Auras are more frequent, but without headaches. Last one occurred early morning as I was awakening.
What's the cause? Golfed 18 holes for the first time since last October. Carried bag, protecting sternum and back. The left side under arm pit, the finger, and left wrist injury came from golf. Got long drive and hit the ball ok, short game was rusty. Shot 90.
Top of foot was sore after spinning on Monday. Moved cleat back about 1/4 inch. and loosen laces/strap. That's better today.
The spine injury/pain is coming from bone spurs on the spine cause by God only knows what. The injury sprang up 3 days after the Enchanted Rock race...see below. I was unable to raise arm overhead...especially left one...without pain. Saw next door neighbor in Texas who is a chiropractor. After two weeks of little gain called my friend in Michigan (chiropractor) who said to get it X-rayed. Decided to change Texas Chiropractor after she did little adjustments with little results. Dr. Todd Whipple was recommended to my by Spin instructor/all-star triathlete Dave Garza.
X-rays were deemed "normal" by Radiology MD. Then Dr. Todd explained the bone spurs between T-10 and T11. On the X-ray see the light spots between the vertebrae. When I'm still there's no pain. When I move all of the nerves are upset by the spurs. The bone spurs occurred after a natural fusion had taken place. Perhaps the other Doc's adjustments broke it or could have happened during the cattle guard crossing. In any case, it wasn't caused by fall or impact. 6 weeks later I can work out with light weights but the area is still tender. Dr. Todd's treatments were very effective. The next day I did a light jog without pain. After workouts I iced and then heat with pad. Also taking prosfood supplement to increase blood acidity to dissolve the spurs. A total of 4 treatments seemed to help dramatically, but I've yet to test with full blown workout.
Side effect of the adjustments has been a sternum injury. Hurts when I play golf or do pushups. Had something similar years ago from golf. Took months to heal. UGH! Hope this isn't the same.
The Auras are more frequent but consistent. The last 20-25 minutes, are in a "C" shape or reverse "C", grow from small spots in the line of vision out of vision and then slowly left, right, or up, then block peripheral vision, and then gone. These started on my 60th birthday before I started to ride my bike. Never had one during exercise, always at rest. My temples are tender after but no full blown headache or migraine. Grateful for this at least!
May 19th update: Not much better. Not able to run without pain on top of right foot. Rib cage is sore on both sides all the way to soft ribs. Hurt my right elbow with awkward golf swing 2 days ago, but elbow isn't bad. Push-ups still hurt the chest, more just to the right of the sternum.
Back is better.
Good news, able to spin and ride, but steep hills hurt right foot.... Light walking or riding is not a problem. Steep hill climbs either riding or walking just hurts. Can work through the pain, but still hurts.
Gone to double fish oil and 2250 glucosamine per day based on recommendation from on-line Chiropractor.
Canceled golf for Friday and Saturday. Golf really strains my chest. Going to ride with the WAM gang on Saturday...hopefully.
Seeing a Doctor on 5/31 for foot...Sports DO
5/31 update: Dr. VanHuysen D.O. says bone spurs NOT bone spurs but probably from long time in drops without proper training. As for sternum and rib pain that's Costochondritis from poor posture..tight chest and shoulders. The top of right foot is more serious...some kind of lesion shows in xray. He wants an MRI to find out if there's anything more serious. The issue shows as a dark spot about 3/4 in diameter...looks like a cyst...worst case a cancerous tumor. There's some bone loss right where it hurts the most. But there is also pain in the arch. Gave me instructions to ice the foot and use a frozen plastic bottle on the arch. MRI scheduled for 6/4/11. My energy is good, but I quit golf today after 4 holes because every swing was painful either foot or chest. I withdrew from Member Member.
June 6th Update: taking Motrin as of yesterday...400 mg. 4 times a day for inflammation and pain. Had massage yesterday and the chest hurt just to lay down on it! Any pressure at all on the back just hurt my chest. MRI was done yesterday on foot....1 hour and 10 minutes in that stupid noisy MRI room. Did contrast...which takes longer. Walked 3 miles today in 50 minutes. Rib right below right boob is sorest and runs around the side. The muscle below the arm pit is very sore without Motrin ... Was doing hot and cold plunges last week, but stopping that for now.
Told my friends that NO golf, running, or biking, or sex for the foreseeable future. Goal is to be back in time to teach spinning July 2nd and to ride WAM....
June 11th update: Saw Doctor on the 9th to discuss MRI. I called on the 8th to ask if they had the results since VanHuysen said he would call me. Called again after 2 hours and finally connected to nurse Kelly who said they had the results and that Dr. Gorman (surgeon) would be meeting with me and Dr. VanHuysen. Immediately I'm thinking surgury. On the day of my exam VanHuysen brought an intern into the exam and started to go over the MRI results. He said he didn't call because it was complicated. I'm thinking he didn't want to break the bad news to me over the phone. He started by showing me the report, "Differential considerations include giant cell reparative granuloma, enchondroma, and giant cell tumor, intraosseous ganglion, aneurysmal bone cyst, and subchondral cyst..." I could feel my face flush as I'm thinking "oh, my God." Earlier I had read about a foot MRI that the physician described as a "mess." This is the worst possible news, I'm thinking. About that time Dr. Gorman walked in and proceeded to tell me that there were several options. The most severe was to removed the tumor/lesion which had drapped itself over the base of the first metatarsal extending to the subchondral bone plate at the first TMT joint. That would involve removing any affected bone and replacing it with cadaver marrow or marrow from my hip or elsewhere. The next is to make a small incision to sample the lesion to rule out cancer. However, he didn't believe the MRI indicated a cancerous tumor. He said that he's 95% sure it wasn't cancer especially since I had similar pain in 2009 after the Turkey Trot (a good reason to keep a blog). Also, the lesion showed a distinct outline which is not true of cancerous tumors which have tentacles or arteries. Whew! That was the good news! The last option is to see how things go with meds,rest and ice. Much better option than surgery as long as things get better. He wants to re-xray in 3 months to monitor growth of the lesion.
As for the MRI results that VanHuysen was reading, the words "are felt to be less likely given the enhancement" were key. They came at the long list of "differential considerations." Turns out this is the list they ruled out! Would be much easier on the patient if it was described differently.
Another MRI result was more enlightening: "Surrounding edema (fluid) like signal within the first metatarsal may represent grade 3 stress injury. AH! So this is the culprit. Look like I had a grade 3 (one grade below stress fracture). That explains why the fluid/lesion developed.
As for Costochondritis the pain seemed to move below my right breast and to the side. VanHuysen showed me at trigger point release where I bent over to release the pain and then he held his thumb over the spot while I took deep breaths. He put enough pressure to cause my skin to whiten around the spot. He demonstrated by pushing on my thigh. The next day 6/10 I woke up and felt very good! Especially the chest. I went to the gym and did my Dr. approved shoulder strengthening routine and felt good. Avoided full knee based pushups....but did using the wall bar in studio 1. Tried to do knee pushups on the padded table, but felt pain when I layed chest down on the table.
Little things are better like less pain getting in and out of cars.
Came home ate and a few hours later cut the lawn. However, turning the mower caused some pain.
This morning (6/11) the chest is sore. Sternum and shoulders are tight. Being very careful when I sneeze or cough. Got new monitor stands which raise the monitors 6". Forces me to sit up more and is a reminder not to slouch....
As for the red patches on my thighs and lower abdomen, these are skin fungus and I'm now treating with a cream I've had from last year.
Taking 400 MG Motrin at night to keep pain down during the night. Data A has been 25 or higher for most nights... Sleeping well..
6/21/2011 Update: Right foot has gotten worse. For the first time it bothered my sleep, although I didn't take any motrin yesterday. Did a slow 50 minute walk yesterday and it was quite sore after and at bedtime it ached. Managed to fall asleep but woke to pain twice and after 4 1/2 hours sleep I laid in bed worrying about this being more than just a grade 3 injury.
My back has been a problem especially since trying leg presses and ab rotation machine at the gym. In hindsight that was stupid considering the Costochondritis. My left romboid and should blade have been hurting as well as my spine around T-3 (not the same as my first Chiro treatments).
Last bike ride was easy 30 miles on May 29th with note that foot hurt on hills. Last run was jog/walk with Saucony shoes on May 22nd. Last 5 mile run was April 29th in Texas.
Yesterday read about K tape and applied to chest and back. Seems to help my chest for sure. Tried on foot but made it worse or at least no better. Also found a pectoral muscle stretch that I'm doing about 10 times a day. Doing standing from chair exercise 3x's a day for 10 minutes each to practice engaging glutes and get my heart rate up.
Starting to wonder if I have something more serious or if I have a virus. Some say that Costochondritis is caused by a virus attacking the lining of the chest.
7/5/11 Doctor's appointment with Dr. Gorman who happens to be the son of a guy I played golf with years ago. I'm ready to have surgery. The foot has gotten considerably worse, cannot walk without pain. Just sitting around is fine!
I have a giant cell tumor on the 1st metatarsal of the right foot. It's destroying the bone and is very near the joint which means it probably has destroyed some cartilage. The surgeon will remove the tumor from the bone and then replace it with donor bone (from my shin). He may have to fuse the joint if the cartilage is too far gone. This would be the worst case. Fusion is tricky and can be easily messed up by accidently walking on it and breaking the bond.
The best case is the bone graft only which means I would be back 100% and ready to workout by January. Also, he doesn't think it's cancer based on the slow growth. (I've had pain in the same area off and on for a few years, especially after hard runs/races.)
Worst case is fusion plus graft, which adds a bunch of extra risk and recovery time (probably a year before I can regain my racing form!). PLUS it would probably mean no more running or jumping although that's not certain. BUT I would still be able to bike.
Nobody knows why these tumors develop, however it's pretty clear that mine would have ended with a fractured/destroyed bone somewhere in the future. Here's another case of how exercise led to the pain that led to the discovery. Complete destruction of the bone would have been a much more serious condition resulting in no chance of ever running again.
The cause of these tumors is unknown and they have a risk of re-occurrence so I'll need follow-up exams throughout my life. There's also the risk of deep vein thrombosis because of the inactivity.
Surgery will required a cast for the first 2 weeks followed by a boot for several weeks depending on progress. No weight bearing because that destroys the graft and fusion. We have to rent a hospital bed that is electric plus walker and toilet helper!
Costochondritis has been up and down. 7/6 it feels good, but yesterday it was a problem. Got to watch posture. Also, today woke with a rapid heart rate...80 sitting at computer when it's normally 60. Have a stomach ache.
7/10/11: Stomach, and heart rate back to normal (60 sitting at computer)...and Costochondritis are better. Not sleeping very well, data 8 high teens to low 20's. Taking care to sneeze in a good position ie. in a chair bent over with a shoulders rolled forward and elbows at sides and on top of thighs. There's no "popping" of the sternum when I sneeze in this position! In a few days the Costochondritis is MUCH improved...thankfully.
Surgery is confirmed for 7/20/2011 at Bronson Hospital in Kalamazoo Mi. Doctor Robert Gorman is the surgeon. Surgery may take up to 3 hours depending on process involved. Visited hospital supply place and view bed and other equipment. Bought a second hand Kneal Knee Cruiser for $250.
Let's get this done so I can get on with my life....
7/23/2011: Multiple Myeloma...are you kidding me! Seeing Oncologist on 7/27/2011 to learn official diagnosis and map out treatment. Tumor shows signs of myeloma. Blood workup shows only one elevated ..light chain protein pattern. X-rays show spots on both clavical 1-2 and on skull...several spots...very small cannot feel. One less definite in lumbar vertebra. Nothing obvious in sternum which is where I have a hot spot.
Surgeon removed tumor, soaked area with alchohol to kill cells, patched the bone hole with cement, and closed me up. Had tingling in hands after because arms were in crucifix position and resting on my funny bone. Also, had sore throat because nurse had trouble getting hose down my windpipe. I had asked for my head to be elevated because of vertigo fear. This made it difficult to insert tube.
Time to start a new blog on multiple myeloma. My nurse friend told my wife that this is a "long haul." Thank God I'm in decent physical condition to fight this battle. Didn't expect to face my mortality so soon, but here it is. Bring it grim reaper!
7/29/11: Sent this to my gym associates and friends: On July 19th my surgery to remove a bone tumor turned serious when the routine biopsy unexpectedly showed cancer. Further diagnosis led to the conclusion that I have multiple myeloma (Stage 2 minus). Part of the main toe bone was damaged by the tumor and will need to repaired at a later date. That foot is currently in a hard cast and we're hopeful that I'll be able to walk soon.
Clearly, this is a shock to everyone. We've been blessed beyond my wildest dreams with a good life and wonderful friends and family. At the same time I'm determined to "go kick some nasty cell ass" as one friend put it.
If anyone is prepared to deal with the double whammy of foot injury plus cancer, it's me. My nutrition habits, strength, and endurance work are already paying off. Also, mental toughness from my competitive running and biking will be needed to deal with the adversity and pain. My Doctors say I have a spine and cardiovascular system of a healthy 40 year old. In the coming weeks as I face radiation therapy I'm going to play those fitness cards.
As for the future, I asked my Oncologist if I should sell my bikes. He said, "not yet." He said, "you are a very determined man in otherwise very good health. This gives you the best chance for success" Amen.
8/15/2011: Stem Cell Transplant. Here we go!
Stages don't seem to matter in the case of Myeloma. Officially the Doctor at MD Anderson says I'm in stage I, but that gives me no relief from the process, but it raises the odds of survival. It's likely I have myeloma lesions/tumors on my sternum and two places on my spine at T-4 and L2 vertebra. She's restricting my weight lifting to 15 pounds to avoid breaking bones. When we asked of her confidence in the diagnosis she said, 100%.
Going forward the treatment is the challenge. Each of the following steps must be completed successfully before the next step begins: 1. chemotherapy over 5-16 weeks to subdue the cancer, 2. a two week break from the drugs, 3. enhance the production and push stem cells from my bone marrow to the blood with special drugs and then harvest those cancer free or near free stem cells over 2 weeks in the hospital, 4. take near lethal doses of Chemotherapy to kill off and bring the nasty cancer to the brink of extinction over 2-3 weeks, 5. transplant my healthy stem cells back in my body and rebuild my immune system over a two week stay in the hospital. The goal is to beat the crap out of the myeloma cells, to drive them to the brink of extinction where they stay for many years. The final check at the end of 6 months should show that the cancer is knocked on it's ass. If not then we repeat the Chemotherapy with more powerful drugs and retry the transplant. The hope is that over time new, more targeted and effective therapies are developed so that when cancer's ugly head rises again there will be a cure. My goal is to be sure to be around when a cure is found...this is not a pipe dream.
This is classic risk versus reward. We're going to take the risk that the treatment isn't worse than the disease. We know what both will do to me, so our eyes are wide open. We know that the treatments will make me fell much worse before it gets better. We know that there's the risk that treatments won't work. The medicines to fight the disease tear at the immune system and vital functions with unwanted side effects. Viruses and bacterial infections lay in wait ready to do their work on a weakened system. There are many beneficial bacteria but there's no such thing as beneficial viruses. Viruses only have one mission and that is to occupy and destroy.
Ok, if I haven't lost you here's the reason for all of this from the results of my PET scan: "Musculoskeletal: Scattered hypermetabolic foci are noted throughout the entire skeleton with corresponding lytic changes on the CT images consistent with osseous myelomatous lesions." The lesion on my foot grew rapidly from May 31 until June 20th. The "notable" lesions are on the T4 vertebral body and on the sternum have an SUV (standard uptick value) 4.2-4.5. This indicates that a lesion is active, likely with myeloma cells. ggod news is that there's no definite extraosseous sites of myeloma, which means that tumors were not found outside the bones.
All of my functions still look good. Immune system is healthy but not able to deal with the cancer as it has mutated to fool my immune system.
The Chemo will be started in Austin within 10 days. Before it begins we plan to get back to Michigan for a few days to close up the house, see some friends, see my dentist (for dental checkup) and surgeon for a status report on the foot. Good news there, I've ditched the cane, boot, and walker. I'm now one of those slow walking seniors you zip past in the grocery. We're still a bit unstable at high speeds, and Liz won't let me drive...yet.
9/11/2011: Foot is doing well,
Chest/Sternum is more of an issue/concern. After 12 days on Chemotherapy to control Multiple Myeloma there's little progress on the sternum pain. It's supposed to resolve over time, but I'm severely limited by the pain. Took Tylenol for a few days, but recently have stopped. Must avoid radiation to sternum at all costs. This would ruin me.
12/29/2011 update: After 2 months of chemo (2 rounds) of Velcade, Dex, and Cy-toxin the cancer is in complete remission without any of the nasty (neuropathy) side effects. Stem cell harvest was difficult with much discomfort, however we got 8.5 million cells in 7 days of Apheresis. On January 11th I'm having a stem cell transplant after Melphalan chemo which is to kill the remaining "hidden" cancer. A side effect is that is damages my bone marrow and this is why I'll receive my stem cells. Recovery is about 6 months. Hopefully, I'll be able to resume riding then. My foot is doing well as can be expected considering the blob in it! However, I've been able to riding my stationary bike and trainer as well as attempting some short runs. The right foot remains sick looking with some circulation issues.
3/2/2012 Update:
Stem Cell Trandplant on 1/11/2012 went relatively well. It was a difficult time, but did it all out patient with on platelet transfusion. My wife was my caregiver supreme. Complications included loss of 20 pounds, all my hair, severe constipation, and a condition where the blood starts to pool near the skin and near spontaneous bleeding when platelets dropped to 16 versus a normal of 140. No fever or other serious illness. Slept 10 plus hours per day and remained isolated in our apartment with the occasional walks outside with a mask. A 10 minute ride on the stationary bike felt like 2 hours. It took all of my strength to do it. Food tasted nasty but I managed to eat every day. The worst day was the day of the transplant when I threw up 4 times including into a garbage bag on the walkway to the hospital. Had to wear a portable IV for about 14 days for anti-nausea and electrolytes.
Another problem was my CVC (catheter for infusions and chemo). During the second installation a lymph line was cut and I oozed fluids the entire two weeks. The dressing was changed almost every day as the leak never stopped! There was very little blood, just these fluids. However, no infections that my immune system couldn't handle.
Today I walked/jogged 3.5 miles in about 56 minutes. Foot gets a little bitchy at times but no chronic continuous pain. No pain at all during the stationary bike. My upper body has lots of aches, but no sternum pain when sneezing! However, I'm rarely sneezing these days. My shoulders ache when I roll them, and my neck pops like popcorn when rotating my head. Have connective tissue pain around the upper stomach, and chest/pecs. Sometimes it feels like ribs, but more the muscles...I hope/think. Achilles' tendons is tight as are quads. This soreness is all normal according to my Livestrong Nurse.
My stem cell Dr. Parmar said "overall you have made a remarkable recovery." On April 25th we'll find out if the cancer is subdued after they will take a new PET Scan. I honestly don't think I could have run .62 miles today if the cancer was active.
12/30/2016: Well I'm still alive! The first remission lasted 18 months. I was able to ride in the Livestrong Challenge, 75 miles 10 months after my transplant. However, cancer returned in my sternum following a pop in the sternum while doing exercise on the ball lifting 25 pounds. SUV from pet showed activity only in the sternum and it took 3 cycles of Velcade, Cytoxan, and dex to return the suv to zero. After the suffering of 3 months of chemo, I slowly began to run, but not bike. Eventually, I worked my way to 5 miles and did the turkey trot in 56 minutes. However, I was having some sternum pain during the run. A December exam in 2014 showed a return of cancer in the sternum. We repeated the same protocol, plus we added radiation in the sternum. We missed a trip to Disney with the kids. By March I was doing better and we switch to maintenance therapy of Velcade only. I developed many aches and pain, probably due to the bone strengthener Aridia, but also developed increasing neuropathy in my feet, numbness in my hands and tingling in my face. Ringing in ears is another issue. We started a new maintenance Revlimid in May 2015.
In 2016 we were able to travel and enjoy life. We check Yosemite and Sequoia Nation parks off the bucket list for our 45th anniversary. I bought a new Corvette, my first new one. Raced it on the track in August. During the period 2015 to September 2016 I developed severe heart palpitations and afib that required surgery. A successful ablation was performed in early September. Just prior to this I broke a rib, spontaneously in the night. X-rays showed a partial fracture. Docs were not sure if this was Myeloma or osteopathic/osteoarthritis. A pet scan done locally in Austin (on old equipment) showed suv of 3.0 in the right 8-10 rib area. MD Anderson doctor Thomas then recommend a new protocol of 25 mg Revlimid (up from 10 mg maintenance) and dex 40 mg once a week. She suggested 2-3 cycles and then re-evaluate. Planning to go to Disney this time....!
Many new drugs in test and available should I develop future issues. For now, this seems to be working after 1 month as my bone pain is subsiding. No pain meds for now.
All of my bone scans show no progressive Myeloma, a good thing. My blood work looks ok.
The fact that the activity is so localized is encouraging.
I'm looking forward to going back to the gym, lose the 10 pounds I've gained, and getting back on the road bike.
11/21/2017 Update: The cancer returns. August exam at MD Anderson reveals that cancer has resumed activity at the rib broken last year in September. The activity is also around the right 8th 9th rib near spine. K1 go-kart injury, left arm, and hand, back didn't break any bones, but I felt a pop in my back. ER visit where Doctor said she thought my arm was certainly broken, but it wasn't. MD Anderson didn't have an explanation why my arm wasn't broken! 12 weeks done of Dex, Velcade, Cytoxan albeit a slightly reduced dose from prior. Gained some weight as hunger has been an issue. Terrible looking stomach from the Velcade shots... In December we will return to Houston to review results and decide on a game plan. As of now, I need a break. No new neuropathy, but feet are quite spongy with a few sharp pains. My brain is working fine, most days, been winning at bridge. Had lots of sore muscles, aches in shoulders, hips, but knees have been ok. Ablation surgery was very successful, but I notice on dex days that my resting heart rates go up to 80 versus normal 65.
Pain management: occasionally using Tramadol, more using aspircream on sore muscles. Not much pain since right rib is mostly healed...so it feels. No sternum pain. No back pain other than shoulders. Some rib pain depending on if I lay at night on ribs.
My blood work have remained very steady over these past 12 weeks. Platelets have dropped from 120 to 80's, WBC to 3, RBC 3.4, HG 12, but neutrophils have remained normal.
The pattern of chemo is the same week to week. Friday is Velcade, dex, Cytoxan day. Saturday is dex only. On Friday nights and Saturday am lucky to sleep 3-4 hours. Wide awake and energetic during Saturday. Sunday I feel unwell, Monday is worse, Tuesday better. By Wednesday I feel decent, Thursday is near normal. My skin on Sunday and Monday is nasty, little bumps that wash off. No mouth sores or constipation this time. Bowel movements have been strange, ie. explosive gas and several movements a day, but no special constipation.
Walking is my only exercise these days, happy to get 3 miles in about 4-5 times a week. Tillie enjoys our walks and so do I. Still own my bike...it sits in the training device. Hope to ride it one more time in my life.
If the results are good I plan to take 8-12 months off the chemo. Then resume chemo again for 12 weeks to stop cancer before it starts. If new drugs come out may need them as cancer develops resistance to the old ones. My doctor at MDA is telling me if I stop the drugs I will have a bone event. If it's on one of my legs it will be the end of me. So be it. I don't want to die, but I don't want to live my life on chemo.
8/6/2020 update. To whom it may concern. We survive after 5th relapse. On Ninlaro, Dex, Cytoxin since 10/2019. On 5/2020 went to only Ninlaro. Weight is 206, blood numbers remains same...PLT 124, wbc 3.2, rbc 3.5, hem 12.5. Light chains are normal but rising since May. COVID-19 is a concern but easing.
So what the hell is going on? Here's the complete list, 1. rib cage left side under arm pit, 2. Left wrist, 3. Middle finger right hand, 4. top of right foot, 5. spine tender at t-10-11, 6. Sternum bruised. Besides that Auras are more frequent, but without headaches. Last one occurred early morning as I was awakening.
What's the cause? Golfed 18 holes for the first time since last October. Carried bag, protecting sternum and back. The left side under arm pit, the finger, and left wrist injury came from golf. Got long drive and hit the ball ok, short game was rusty. Shot 90.
Top of foot was sore after spinning on Monday. Moved cleat back about 1/4 inch. and loosen laces/strap. That's better today.
The spine injury/pain is coming from bone spurs on the spine cause by God only knows what. The injury sprang up 3 days after the Enchanted Rock race...see below. I was unable to raise arm overhead...especially left one...without pain. Saw next door neighbor in Texas who is a chiropractor. After two weeks of little gain called my friend in Michigan (chiropractor) who said to get it X-rayed. Decided to change Texas Chiropractor after she did little adjustments with little results. Dr. Todd Whipple was recommended to my by Spin instructor/all-star triathlete Dave Garza.
X-rays were deemed "normal" by Radiology MD. Then Dr. Todd explained the bone spurs between T-10 and T11. On the X-ray see the light spots between the vertebrae. When I'm still there's no pain. When I move all of the nerves are upset by the spurs. The bone spurs occurred after a natural fusion had taken place. Perhaps the other Doc's adjustments broke it or could have happened during the cattle guard crossing. In any case, it wasn't caused by fall or impact. 6 weeks later I can work out with light weights but the area is still tender. Dr. Todd's treatments were very effective. The next day I did a light jog without pain. After workouts I iced and then heat with pad. Also taking prosfood supplement to increase blood acidity to dissolve the spurs. A total of 4 treatments seemed to help dramatically, but I've yet to test with full blown workout.
Side effect of the adjustments has been a sternum injury. Hurts when I play golf or do pushups. Had something similar years ago from golf. Took months to heal. UGH! Hope this isn't the same.
The Auras are more frequent but consistent. The last 20-25 minutes, are in a "C" shape or reverse "C", grow from small spots in the line of vision out of vision and then slowly left, right, or up, then block peripheral vision, and then gone. These started on my 60th birthday before I started to ride my bike. Never had one during exercise, always at rest. My temples are tender after but no full blown headache or migraine. Grateful for this at least!
May 19th update: Not much better. Not able to run without pain on top of right foot. Rib cage is sore on both sides all the way to soft ribs. Hurt my right elbow with awkward golf swing 2 days ago, but elbow isn't bad. Push-ups still hurt the chest, more just to the right of the sternum.
Back is better.
Good news, able to spin and ride, but steep hills hurt right foot.... Light walking or riding is not a problem. Steep hill climbs either riding or walking just hurts. Can work through the pain, but still hurts.
Gone to double fish oil and 2250 glucosamine per day based on recommendation from on-line Chiropractor.
Canceled golf for Friday and Saturday. Golf really strains my chest. Going to ride with the WAM gang on Saturday...hopefully.
Seeing a Doctor on 5/31 for foot...Sports DO
5/31 update: Dr. VanHuysen D.O. says bone spurs NOT bone spurs but probably from long time in drops without proper training. As for sternum and rib pain that's Costochondritis from poor posture..tight chest and shoulders. The top of right foot is more serious...some kind of lesion shows in xray. He wants an MRI to find out if there's anything more serious. The issue shows as a dark spot about 3/4 in diameter...looks like a cyst...worst case a cancerous tumor. There's some bone loss right where it hurts the most. But there is also pain in the arch. Gave me instructions to ice the foot and use a frozen plastic bottle on the arch. MRI scheduled for 6/4/11. My energy is good, but I quit golf today after 4 holes because every swing was painful either foot or chest. I withdrew from Member Member.
June 6th Update: taking Motrin as of yesterday...400 mg. 4 times a day for inflammation and pain. Had massage yesterday and the chest hurt just to lay down on it! Any pressure at all on the back just hurt my chest. MRI was done yesterday on foot....1 hour and 10 minutes in that stupid noisy MRI room. Did contrast...which takes longer. Walked 3 miles today in 50 minutes. Rib right below right boob is sorest and runs around the side. The muscle below the arm pit is very sore without Motrin ... Was doing hot and cold plunges last week, but stopping that for now.
Told my friends that NO golf, running, or biking, or sex for the foreseeable future. Goal is to be back in time to teach spinning July 2nd and to ride WAM....
June 11th update: Saw Doctor on the 9th to discuss MRI. I called on the 8th to ask if they had the results since VanHuysen said he would call me. Called again after 2 hours and finally connected to nurse Kelly who said they had the results and that Dr. Gorman (surgeon) would be meeting with me and Dr. VanHuysen. Immediately I'm thinking surgury. On the day of my exam VanHuysen brought an intern into the exam and started to go over the MRI results. He said he didn't call because it was complicated. I'm thinking he didn't want to break the bad news to me over the phone. He started by showing me the report, "Differential considerations include giant cell reparative granuloma, enchondroma, and giant cell tumor, intraosseous ganglion, aneurysmal bone cyst, and subchondral cyst..." I could feel my face flush as I'm thinking "oh, my God." Earlier I had read about a foot MRI that the physician described as a "mess." This is the worst possible news, I'm thinking. About that time Dr. Gorman walked in and proceeded to tell me that there were several options. The most severe was to removed the tumor/lesion which had drapped itself over the base of the first metatarsal extending to the subchondral bone plate at the first TMT joint. That would involve removing any affected bone and replacing it with cadaver marrow or marrow from my hip or elsewhere. The next is to make a small incision to sample the lesion to rule out cancer. However, he didn't believe the MRI indicated a cancerous tumor. He said that he's 95% sure it wasn't cancer especially since I had similar pain in 2009 after the Turkey Trot (a good reason to keep a blog). Also, the lesion showed a distinct outline which is not true of cancerous tumors which have tentacles or arteries. Whew! That was the good news! The last option is to see how things go with meds,rest and ice. Much better option than surgery as long as things get better. He wants to re-xray in 3 months to monitor growth of the lesion.
As for the MRI results that VanHuysen was reading, the words "are felt to be less likely given the enhancement" were key. They came at the long list of "differential considerations." Turns out this is the list they ruled out! Would be much easier on the patient if it was described differently.
Another MRI result was more enlightening: "Surrounding edema (fluid) like signal within the first metatarsal may represent grade 3 stress injury. AH! So this is the culprit. Look like I had a grade 3 (one grade below stress fracture). That explains why the fluid/lesion developed.
As for Costochondritis the pain seemed to move below my right breast and to the side. VanHuysen showed me at trigger point release where I bent over to release the pain and then he held his thumb over the spot while I took deep breaths. He put enough pressure to cause my skin to whiten around the spot. He demonstrated by pushing on my thigh. The next day 6/10 I woke up and felt very good! Especially the chest. I went to the gym and did my Dr. approved shoulder strengthening routine and felt good. Avoided full knee based pushups....but did using the wall bar in studio 1. Tried to do knee pushups on the padded table, but felt pain when I layed chest down on the table.
Little things are better like less pain getting in and out of cars.
Came home ate and a few hours later cut the lawn. However, turning the mower caused some pain.
This morning (6/11) the chest is sore. Sternum and shoulders are tight. Being very careful when I sneeze or cough. Got new monitor stands which raise the monitors 6". Forces me to sit up more and is a reminder not to slouch....
As for the red patches on my thighs and lower abdomen, these are skin fungus and I'm now treating with a cream I've had from last year.
Taking 400 MG Motrin at night to keep pain down during the night. Data A has been 25 or higher for most nights... Sleeping well..
6/21/2011 Update: Right foot has gotten worse. For the first time it bothered my sleep, although I didn't take any motrin yesterday. Did a slow 50 minute walk yesterday and it was quite sore after and at bedtime it ached. Managed to fall asleep but woke to pain twice and after 4 1/2 hours sleep I laid in bed worrying about this being more than just a grade 3 injury.
My back has been a problem especially since trying leg presses and ab rotation machine at the gym. In hindsight that was stupid considering the Costochondritis. My left romboid and should blade have been hurting as well as my spine around T-3 (not the same as my first Chiro treatments).
Last bike ride was easy 30 miles on May 29th with note that foot hurt on hills. Last run was jog/walk with Saucony shoes on May 22nd. Last 5 mile run was April 29th in Texas.
Yesterday read about K tape and applied to chest and back. Seems to help my chest for sure. Tried on foot but made it worse or at least no better. Also found a pectoral muscle stretch that I'm doing about 10 times a day. Doing standing from chair exercise 3x's a day for 10 minutes each to practice engaging glutes and get my heart rate up.
Starting to wonder if I have something more serious or if I have a virus. Some say that Costochondritis is caused by a virus attacking the lining of the chest.
7/5/11 Doctor's appointment with Dr. Gorman who happens to be the son of a guy I played golf with years ago. I'm ready to have surgery. The foot has gotten considerably worse, cannot walk without pain. Just sitting around is fine!
I have a giant cell tumor on the 1st metatarsal of the right foot. It's destroying the bone and is very near the joint which means it probably has destroyed some cartilage. The surgeon will remove the tumor from the bone and then replace it with donor bone (from my shin). He may have to fuse the joint if the cartilage is too far gone. This would be the worst case. Fusion is tricky and can be easily messed up by accidently walking on it and breaking the bond.
The best case is the bone graft only which means I would be back 100% and ready to workout by January. Also, he doesn't think it's cancer based on the slow growth. (I've had pain in the same area off and on for a few years, especially after hard runs/races.)
Worst case is fusion plus graft, which adds a bunch of extra risk and recovery time (probably a year before I can regain my racing form!). PLUS it would probably mean no more running or jumping although that's not certain. BUT I would still be able to bike.
Nobody knows why these tumors develop, however it's pretty clear that mine would have ended with a fractured/destroyed bone somewhere in the future. Here's another case of how exercise led to the pain that led to the discovery. Complete destruction of the bone would have been a much more serious condition resulting in no chance of ever running again.
The cause of these tumors is unknown and they have a risk of re-occurrence so I'll need follow-up exams throughout my life. There's also the risk of deep vein thrombosis because of the inactivity.
Surgery will required a cast for the first 2 weeks followed by a boot for several weeks depending on progress. No weight bearing because that destroys the graft and fusion. We have to rent a hospital bed that is electric plus walker and toilet helper!
Costochondritis has been up and down. 7/6 it feels good, but yesterday it was a problem. Got to watch posture. Also, today woke with a rapid heart rate...80 sitting at computer when it's normally 60. Have a stomach ache.
7/10/11: Stomach, and heart rate back to normal (60 sitting at computer)...and Costochondritis are better. Not sleeping very well, data 8 high teens to low 20's. Taking care to sneeze in a good position ie. in a chair bent over with a shoulders rolled forward and elbows at sides and on top of thighs. There's no "popping" of the sternum when I sneeze in this position! In a few days the Costochondritis is MUCH improved...thankfully.
Surgery is confirmed for 7/20/2011 at Bronson Hospital in Kalamazoo Mi. Doctor Robert Gorman is the surgeon. Surgery may take up to 3 hours depending on process involved. Visited hospital supply place and view bed and other equipment. Bought a second hand Kneal Knee Cruiser for $250.
Let's get this done so I can get on with my life....
7/23/2011: Multiple Myeloma...are you kidding me! Seeing Oncologist on 7/27/2011 to learn official diagnosis and map out treatment. Tumor shows signs of myeloma. Blood workup shows only one elevated ..light chain protein pattern. X-rays show spots on both clavical 1-2 and on skull...several spots...very small cannot feel. One less definite in lumbar vertebra. Nothing obvious in sternum which is where I have a hot spot.
Surgeon removed tumor, soaked area with alchohol to kill cells, patched the bone hole with cement, and closed me up. Had tingling in hands after because arms were in crucifix position and resting on my funny bone. Also, had sore throat because nurse had trouble getting hose down my windpipe. I had asked for my head to be elevated because of vertigo fear. This made it difficult to insert tube.
Time to start a new blog on multiple myeloma. My nurse friend told my wife that this is a "long haul." Thank God I'm in decent physical condition to fight this battle. Didn't expect to face my mortality so soon, but here it is. Bring it grim reaper!
7/29/11: Sent this to my gym associates and friends: On July 19th my surgery to remove a bone tumor turned serious when the routine biopsy unexpectedly showed cancer. Further diagnosis led to the conclusion that I have multiple myeloma (Stage 2 minus). Part of the main toe bone was damaged by the tumor and will need to repaired at a later date. That foot is currently in a hard cast and we're hopeful that I'll be able to walk soon.
Clearly, this is a shock to everyone. We've been blessed beyond my wildest dreams with a good life and wonderful friends and family. At the same time I'm determined to "go kick some nasty cell ass" as one friend put it.
If anyone is prepared to deal with the double whammy of foot injury plus cancer, it's me. My nutrition habits, strength, and endurance work are already paying off. Also, mental toughness from my competitive running and biking will be needed to deal with the adversity and pain. My Doctors say I have a spine and cardiovascular system of a healthy 40 year old. In the coming weeks as I face radiation therapy I'm going to play those fitness cards.
As for the future, I asked my Oncologist if I should sell my bikes. He said, "not yet." He said, "you are a very determined man in otherwise very good health. This gives you the best chance for success" Amen.
8/15/2011: Stem Cell Transplant. Here we go!
Stages don't seem to matter in the case of Myeloma. Officially the Doctor at MD Anderson says I'm in stage I, but that gives me no relief from the process, but it raises the odds of survival. It's likely I have myeloma lesions/tumors on my sternum and two places on my spine at T-4 and L2 vertebra. She's restricting my weight lifting to 15 pounds to avoid breaking bones. When we asked of her confidence in the diagnosis she said, 100%.
Going forward the treatment is the challenge. Each of the following steps must be completed successfully before the next step begins: 1. chemotherapy over 5-16 weeks to subdue the cancer, 2. a two week break from the drugs, 3. enhance the production and push stem cells from my bone marrow to the blood with special drugs and then harvest those cancer free or near free stem cells over 2 weeks in the hospital, 4. take near lethal doses of Chemotherapy to kill off and bring the nasty cancer to the brink of extinction over 2-3 weeks, 5. transplant my healthy stem cells back in my body and rebuild my immune system over a two week stay in the hospital. The goal is to beat the crap out of the myeloma cells, to drive them to the brink of extinction where they stay for many years. The final check at the end of 6 months should show that the cancer is knocked on it's ass. If not then we repeat the Chemotherapy with more powerful drugs and retry the transplant. The hope is that over time new, more targeted and effective therapies are developed so that when cancer's ugly head rises again there will be a cure. My goal is to be sure to be around when a cure is found...this is not a pipe dream.
This is classic risk versus reward. We're going to take the risk that the treatment isn't worse than the disease. We know what both will do to me, so our eyes are wide open. We know that the treatments will make me fell much worse before it gets better. We know that there's the risk that treatments won't work. The medicines to fight the disease tear at the immune system and vital functions with unwanted side effects. Viruses and bacterial infections lay in wait ready to do their work on a weakened system. There are many beneficial bacteria but there's no such thing as beneficial viruses. Viruses only have one mission and that is to occupy and destroy.
Ok, if I haven't lost you here's the reason for all of this from the results of my PET scan: "Musculoskeletal: Scattered hypermetabolic foci are noted throughout the entire skeleton with corresponding lytic changes on the CT images consistent with osseous myelomatous lesions." The lesion on my foot grew rapidly from May 31 until June 20th. The "notable" lesions are on the T4 vertebral body and on the sternum have an SUV (standard uptick value) 4.2-4.5. This indicates that a lesion is active, likely with myeloma cells. ggod news is that there's no definite extraosseous sites of myeloma, which means that tumors were not found outside the bones.
All of my functions still look good. Immune system is healthy but not able to deal with the cancer as it has mutated to fool my immune system.
The Chemo will be started in Austin within 10 days. Before it begins we plan to get back to Michigan for a few days to close up the house, see some friends, see my dentist (for dental checkup) and surgeon for a status report on the foot. Good news there, I've ditched the cane, boot, and walker. I'm now one of those slow walking seniors you zip past in the grocery. We're still a bit unstable at high speeds, and Liz won't let me drive...yet.
9/11/2011: Foot is doing well,
Chest/Sternum is more of an issue/concern. After 12 days on Chemotherapy to control Multiple Myeloma there's little progress on the sternum pain. It's supposed to resolve over time, but I'm severely limited by the pain. Took Tylenol for a few days, but recently have stopped. Must avoid radiation to sternum at all costs. This would ruin me.
12/29/2011 update: After 2 months of chemo (2 rounds) of Velcade, Dex, and Cy-toxin the cancer is in complete remission without any of the nasty (neuropathy) side effects. Stem cell harvest was difficult with much discomfort, however we got 8.5 million cells in 7 days of Apheresis. On January 11th I'm having a stem cell transplant after Melphalan chemo which is to kill the remaining "hidden" cancer. A side effect is that is damages my bone marrow and this is why I'll receive my stem cells. Recovery is about 6 months. Hopefully, I'll be able to resume riding then. My foot is doing well as can be expected considering the blob in it! However, I've been able to riding my stationary bike and trainer as well as attempting some short runs. The right foot remains sick looking with some circulation issues.
3/2/2012 Update:
Stem Cell Trandplant on 1/11/2012 went relatively well. It was a difficult time, but did it all out patient with on platelet transfusion. My wife was my caregiver supreme. Complications included loss of 20 pounds, all my hair, severe constipation, and a condition where the blood starts to pool near the skin and near spontaneous bleeding when platelets dropped to 16 versus a normal of 140. No fever or other serious illness. Slept 10 plus hours per day and remained isolated in our apartment with the occasional walks outside with a mask. A 10 minute ride on the stationary bike felt like 2 hours. It took all of my strength to do it. Food tasted nasty but I managed to eat every day. The worst day was the day of the transplant when I threw up 4 times including into a garbage bag on the walkway to the hospital. Had to wear a portable IV for about 14 days for anti-nausea and electrolytes.
Another problem was my CVC (catheter for infusions and chemo). During the second installation a lymph line was cut and I oozed fluids the entire two weeks. The dressing was changed almost every day as the leak never stopped! There was very little blood, just these fluids. However, no infections that my immune system couldn't handle.
Today I walked/jogged 3.5 miles in about 56 minutes. Foot gets a little bitchy at times but no chronic continuous pain. No pain at all during the stationary bike. My upper body has lots of aches, but no sternum pain when sneezing! However, I'm rarely sneezing these days. My shoulders ache when I roll them, and my neck pops like popcorn when rotating my head. Have connective tissue pain around the upper stomach, and chest/pecs. Sometimes it feels like ribs, but more the muscles...I hope/think. Achilles' tendons is tight as are quads. This soreness is all normal according to my Livestrong Nurse.
My stem cell Dr. Parmar said "overall you have made a remarkable recovery." On April 25th we'll find out if the cancer is subdued after they will take a new PET Scan. I honestly don't think I could have run .62 miles today if the cancer was active.
12/30/2016: Well I'm still alive! The first remission lasted 18 months. I was able to ride in the Livestrong Challenge, 75 miles 10 months after my transplant. However, cancer returned in my sternum following a pop in the sternum while doing exercise on the ball lifting 25 pounds. SUV from pet showed activity only in the sternum and it took 3 cycles of Velcade, Cytoxan, and dex to return the suv to zero. After the suffering of 3 months of chemo, I slowly began to run, but not bike. Eventually, I worked my way to 5 miles and did the turkey trot in 56 minutes. However, I was having some sternum pain during the run. A December exam in 2014 showed a return of cancer in the sternum. We repeated the same protocol, plus we added radiation in the sternum. We missed a trip to Disney with the kids. By March I was doing better and we switch to maintenance therapy of Velcade only. I developed many aches and pain, probably due to the bone strengthener Aridia, but also developed increasing neuropathy in my feet, numbness in my hands and tingling in my face. Ringing in ears is another issue. We started a new maintenance Revlimid in May 2015.
In 2016 we were able to travel and enjoy life. We check Yosemite and Sequoia Nation parks off the bucket list for our 45th anniversary. I bought a new Corvette, my first new one. Raced it on the track in August. During the period 2015 to September 2016 I developed severe heart palpitations and afib that required surgery. A successful ablation was performed in early September. Just prior to this I broke a rib, spontaneously in the night. X-rays showed a partial fracture. Docs were not sure if this was Myeloma or osteopathic/osteoarthritis. A pet scan done locally in Austin (on old equipment) showed suv of 3.0 in the right 8-10 rib area. MD Anderson doctor Thomas then recommend a new protocol of 25 mg Revlimid (up from 10 mg maintenance) and dex 40 mg once a week. She suggested 2-3 cycles and then re-evaluate. Planning to go to Disney this time....!
Many new drugs in test and available should I develop future issues. For now, this seems to be working after 1 month as my bone pain is subsiding. No pain meds for now.
All of my bone scans show no progressive Myeloma, a good thing. My blood work looks ok.
The fact that the activity is so localized is encouraging.
I'm looking forward to going back to the gym, lose the 10 pounds I've gained, and getting back on the road bike.
11/21/2017 Update: The cancer returns. August exam at MD Anderson reveals that cancer has resumed activity at the rib broken last year in September. The activity is also around the right 8th 9th rib near spine. K1 go-kart injury, left arm, and hand, back didn't break any bones, but I felt a pop in my back. ER visit where Doctor said she thought my arm was certainly broken, but it wasn't. MD Anderson didn't have an explanation why my arm wasn't broken! 12 weeks done of Dex, Velcade, Cytoxan albeit a slightly reduced dose from prior. Gained some weight as hunger has been an issue. Terrible looking stomach from the Velcade shots... In December we will return to Houston to review results and decide on a game plan. As of now, I need a break. No new neuropathy, but feet are quite spongy with a few sharp pains. My brain is working fine, most days, been winning at bridge. Had lots of sore muscles, aches in shoulders, hips, but knees have been ok. Ablation surgery was very successful, but I notice on dex days that my resting heart rates go up to 80 versus normal 65.
Pain management: occasionally using Tramadol, more using aspircream on sore muscles. Not much pain since right rib is mostly healed...so it feels. No sternum pain. No back pain other than shoulders. Some rib pain depending on if I lay at night on ribs.
My blood work have remained very steady over these past 12 weeks. Platelets have dropped from 120 to 80's, WBC to 3, RBC 3.4, HG 12, but neutrophils have remained normal.
The pattern of chemo is the same week to week. Friday is Velcade, dex, Cytoxan day. Saturday is dex only. On Friday nights and Saturday am lucky to sleep 3-4 hours. Wide awake and energetic during Saturday. Sunday I feel unwell, Monday is worse, Tuesday better. By Wednesday I feel decent, Thursday is near normal. My skin on Sunday and Monday is nasty, little bumps that wash off. No mouth sores or constipation this time. Bowel movements have been strange, ie. explosive gas and several movements a day, but no special constipation.
Walking is my only exercise these days, happy to get 3 miles in about 4-5 times a week. Tillie enjoys our walks and so do I. Still own my bike...it sits in the training device. Hope to ride it one more time in my life.
If the results are good I plan to take 8-12 months off the chemo. Then resume chemo again for 12 weeks to stop cancer before it starts. If new drugs come out may need them as cancer develops resistance to the old ones. My doctor at MDA is telling me if I stop the drugs I will have a bone event. If it's on one of my legs it will be the end of me. So be it. I don't want to die, but I don't want to live my life on chemo.
8/6/2020 update. To whom it may concern. We survive after 5th relapse. On Ninlaro, Dex, Cytoxin since 10/2019. On 5/2020 went to only Ninlaro. Weight is 206, blood numbers remains same...PLT 124, wbc 3.2, rbc 3.5, hem 12.5. Light chains are normal but rising since May. COVID-19 is a concern but easing.
We planned on visiting Egypt in March but cancelled 3/11/2020. Cancelled Egypt in October 2019 becauseWife broke shoulder (reverse replacement surgery), had surgery and has recovered.
Ninlaro kicks my ass for day 3-5. Sleep 8 hours then taking 1-2 hours naps on days 3-5. Without Dex am sleeping well. Walking 2-3 miles...slowly. Lots of hand isssues, swelling of a couple of fingers. Sore on left thumb not healing.
We fight on.
Wednesday, March 30, 2011
Enchanted Rock 2011
Another learning experience with several mistakes but some progress. Two weeks ago did a tune up in Seguin, Texas consisting of a 5k run, 14 mile ride, 5k run. Got the equipment, a new Felt B12 Tri-bike equipped with Zipp 404 on the front and 808 on the back, and a sweet racing helmet. Got the bag of Tri goods, GU gels, and water put together. Got a good nights sleep back to back and a couple of days of rest.
Been working on speeding up transitions by running in socks through transition with shoes clipped into pedals, then hopping on top of left pedal while swinging right leg over saddle to top of shoe on right pedal. Slipped foot into right and then left shoe and buckled up. At the end of ride slipped feet from shoes then pedaled on top of shoes before swinging right leg over the seat on coasting/breaking to end of bike route, jumping off and running to the transition area.
Nutrition was supposed to be about 300 calories per hour comprised of GU and Gatorade. Drank about 6 OZ of water moments before the race. Carried a 24 OZ bottle of Gatorade (100 cal) on run with, a 20 OZ bottle of Gatorade (slightly diluted, 50 cal) on the bike, and another 10 OZ of water for the final run. Had 100 Calories of GU chomps 1/2 before start and planned to eat another 100 before biking. Used a rubber band to secure a GU gel to my running belt with my number. Had 100 Cal of GU taped to the bike, and another waiting ahead of the final run.
My training had consisted of a few Brick run, bike, run. Easy jogs for recovery, hard biking, and challenging (Dre) circuit workouts. Turns out that my lack of running training doomed me to cramping and extreme soreness.
Night before we walked across the street from the Hampton Inn to Mexican restaurant, Mamacetas. I ordered cheese free enchiladas with tomatillio sauce (green). Finished dinner around 8 pm and found ourselves stranded by a lightning storm for about 45 minutes. Shared a cab (Prius) with a nice couple from San Antonio who wished me well during the race. Fredericksberg got about 1 1/2 inches of rain, but the race site got zero rain. Good thing because the course might have been a muddy/slippery mess if it had!
Awoke around 4:45 ahead of alarm clock. Data A was about 34 which is great for 6 hours sleep. Night before it was 24 with 7.5 hours sleep. Had a shake which is about 600 calories, and then rolled for about 15 minutes on legs and back. Attempted to pump up my Zipp tires but had trouble with rear...wouldn't hold air. Front pumped to 110 PSI.
Arrived at the park around 6:40 am to a mob scene at check in. Cars were backed up in the dark waiting for others to check-in. Left the car with Liz and got marked, returned to car and unloaded bike and gear. Moved to parking area about 1/4 mile from the check-in Pavillion and transition area. We then walked in the dark back to the transition area where I picked up my timing chip secured it to my ankle and headed to my bike. I needed to get that tire pumped up. Unfortunately, the tire value seemed to be an issue and we had trouble getting air into the tire. So I'm concerned about how it will do in the race. The clock is ticking and the MC starts to give race instructions. I need to get my butt over to the starting line.
I grab my GU pack and eat about half the bag, drink 6 oz. water, clip the bike shoes on the pedals, and spread out my gear for the run to bike transition. Helmet in position, and sunglasses in the helmet. By this time it's light enough to see the trail.
I was barely on time for the start and had no time to warm up and ended up near the rear of the field.
Horn sounded and we were off. I took it easy for the first 1/2 mile due to the narrow paths, rocks, and vegetation. Pushed hard after that and my heart rate hit 166 maximum on some of the steeper hills. The run heart rate was about 158-160 average. Knees and legs felt fine. Finished the 5 mile run first in my age group in about 43 minutes and approached the transition area where my back was in the rear. Transition time was a minute slower than winner. Anything over 45 seconds is SLOW. This meant that I would have to run across the entire transition in either my bike shoes or my socks. Turns out socks was a bad choice because the rocks were very hard on my heals and feet. Got out of transition hopped on bike with a pretty fast transition of around 1 minute, despite hobbling on the rocks. Took me a minute to get my feet in the shoes, but up to speed quickly.
During the run I consumed the entire bottle of Gatorade, ate one GU gel, and popped the rest of the GU chomps at the transition. During the ride I finished about 20 OZ of diluted Gatorade and had a GU Gel roughly 10 miles out. When I got back to the transition I ate another GU Gel pack while heading to the top of the rock.
Left the transition area ahead of my competition and the ride was great for the most part. My Garmin watch wasn't set properly and the Bezel wasn't locked. I passed up about 30 people during the first 20 miles. One person passed me. One dude almost cut me off on the cattle guard as he swerved last second to a different spot on the guard. At around the 12 mile mark we climbed and I felt the gear was too big. My cadence dropped and I struggled to push up the hill. Shortly after I felt some tinges in my right calf. At 14 miles my right hamstring got tight, I slowed and it cramped. I tried to stand up and relax but it wouldn't let me move. I used my left leg to pedal which several people passed me. It calmed down as I approached the end of the bike ride allowing me to remove my right foot and swing my leg over the seat. At this time my right calf cramped up, and I could feel my toes curl. I stopped and unclipped my left shoe, so one was on and the other off. Started to walk to transition when the left hamstring just put me on the ground. I lost about 10 minutes dealing with this.
Despite losing at least 10 minutes my competitor only beat me by 3 minutes in the bike ride.
Once the hamstrings calmed down I moved to the transition all the while in severe pain from the rocks on my feet. Somehow I thought that pain might keep me from cramping. I drank about 4 oz of water, grabbed another GU gel and took the bottle with me to the trail. I jogged very slowly with my heart rate around 135 along the trail to the rock. One time I stopped about 20 seconds as it felt like the right hamstring was going to cramp. It didn't. I took a bottle and drank about half and walked up the rock. My heart rate was about 155 going up the rock but no cramps.
My time was about the same as 2010 and I finished 2nd in my age group but well below my expectations. But I was safe and relatively unhurt, and I finished.
Aftermath: the next day the bottoms of my heels were extremely sore, hamstrings were tight. Two days later the hamstrings are tight, but the heals are OK. My back is sore from an injury in AZ...coughing while riding. I rested both Monday and Tuesday using ice and heat, plus I rolled legs and back.
Lessons:
1. Pump up tires night before.
2. Make sure helmet straps are not stuck in helmet...try it on!
3. Must train like you race! At least train in both hard runs and hard rides and Brick train....run, bike, run. My hamstrings had not seen hard running for weeks.
4. Check the transition for foot damaging rocks before deciding transition strategy.
5. Get to the race TOO early rather than JIT!
6. If you do shoe-less transitions then don't undo both shoe straps because the inner strap could get stuck in chain or Garmin sensor.
7. Garmin set-up for races: Turn auto-resume to off, set run/bike option to bike, start the workout, select the screen for heart rate/speed, lock the bezel. The bezel was especially annoying since it kept changing as it hit my sleeve or aerobars.
8. Do light stretching on the way in from the bike ride to deactivate the cramping tendency. LIGHT.
Been working on speeding up transitions by running in socks through transition with shoes clipped into pedals, then hopping on top of left pedal while swinging right leg over saddle to top of shoe on right pedal. Slipped foot into right and then left shoe and buckled up. At the end of ride slipped feet from shoes then pedaled on top of shoes before swinging right leg over the seat on coasting/breaking to end of bike route, jumping off and running to the transition area.
Nutrition was supposed to be about 300 calories per hour comprised of GU and Gatorade. Drank about 6 OZ of water moments before the race. Carried a 24 OZ bottle of Gatorade (100 cal) on run with, a 20 OZ bottle of Gatorade (slightly diluted, 50 cal) on the bike, and another 10 OZ of water for the final run. Had 100 Calories of GU chomps 1/2 before start and planned to eat another 100 before biking. Used a rubber band to secure a GU gel to my running belt with my number. Had 100 Cal of GU taped to the bike, and another waiting ahead of the final run.
My training had consisted of a few Brick run, bike, run. Easy jogs for recovery, hard biking, and challenging (Dre) circuit workouts. Turns out that my lack of running training doomed me to cramping and extreme soreness.
Night before we walked across the street from the Hampton Inn to Mexican restaurant, Mamacetas. I ordered cheese free enchiladas with tomatillio sauce (green). Finished dinner around 8 pm and found ourselves stranded by a lightning storm for about 45 minutes. Shared a cab (Prius) with a nice couple from San Antonio who wished me well during the race. Fredericksberg got about 1 1/2 inches of rain, but the race site got zero rain. Good thing because the course might have been a muddy/slippery mess if it had!
Awoke around 4:45 ahead of alarm clock. Data A was about 34 which is great for 6 hours sleep. Night before it was 24 with 7.5 hours sleep. Had a shake which is about 600 calories, and then rolled for about 15 minutes on legs and back. Attempted to pump up my Zipp tires but had trouble with rear...wouldn't hold air. Front pumped to 110 PSI.
Arrived at the park around 6:40 am to a mob scene at check in. Cars were backed up in the dark waiting for others to check-in. Left the car with Liz and got marked, returned to car and unloaded bike and gear. Moved to parking area about 1/4 mile from the check-in Pavillion and transition area. We then walked in the dark back to the transition area where I picked up my timing chip secured it to my ankle and headed to my bike. I needed to get that tire pumped up. Unfortunately, the tire value seemed to be an issue and we had trouble getting air into the tire. So I'm concerned about how it will do in the race. The clock is ticking and the MC starts to give race instructions. I need to get my butt over to the starting line.
I grab my GU pack and eat about half the bag, drink 6 oz. water, clip the bike shoes on the pedals, and spread out my gear for the run to bike transition. Helmet in position, and sunglasses in the helmet. By this time it's light enough to see the trail.
I was barely on time for the start and had no time to warm up and ended up near the rear of the field.
Horn sounded and we were off. I took it easy for the first 1/2 mile due to the narrow paths, rocks, and vegetation. Pushed hard after that and my heart rate hit 166 maximum on some of the steeper hills. The run heart rate was about 158-160 average. Knees and legs felt fine. Finished the 5 mile run first in my age group in about 43 minutes and approached the transition area where my back was in the rear. Transition time was a minute slower than winner. Anything over 45 seconds is SLOW. This meant that I would have to run across the entire transition in either my bike shoes or my socks. Turns out socks was a bad choice because the rocks were very hard on my heals and feet. Got out of transition hopped on bike with a pretty fast transition of around 1 minute, despite hobbling on the rocks. Took me a minute to get my feet in the shoes, but up to speed quickly.
During the run I consumed the entire bottle of Gatorade, ate one GU gel, and popped the rest of the GU chomps at the transition. During the ride I finished about 20 OZ of diluted Gatorade and had a GU Gel roughly 10 miles out. When I got back to the transition I ate another GU Gel pack while heading to the top of the rock.
Left the transition area ahead of my competition and the ride was great for the most part. My Garmin watch wasn't set properly and the Bezel wasn't locked. I passed up about 30 people during the first 20 miles. One person passed me. One dude almost cut me off on the cattle guard as he swerved last second to a different spot on the guard. At around the 12 mile mark we climbed and I felt the gear was too big. My cadence dropped and I struggled to push up the hill. Shortly after I felt some tinges in my right calf. At 14 miles my right hamstring got tight, I slowed and it cramped. I tried to stand up and relax but it wouldn't let me move. I used my left leg to pedal which several people passed me. It calmed down as I approached the end of the bike ride allowing me to remove my right foot and swing my leg over the seat. At this time my right calf cramped up, and I could feel my toes curl. I stopped and unclipped my left shoe, so one was on and the other off. Started to walk to transition when the left hamstring just put me on the ground. I lost about 10 minutes dealing with this.
Despite losing at least 10 minutes my competitor only beat me by 3 minutes in the bike ride.
Once the hamstrings calmed down I moved to the transition all the while in severe pain from the rocks on my feet. Somehow I thought that pain might keep me from cramping. I drank about 4 oz of water, grabbed another GU gel and took the bottle with me to the trail. I jogged very slowly with my heart rate around 135 along the trail to the rock. One time I stopped about 20 seconds as it felt like the right hamstring was going to cramp. It didn't. I took a bottle and drank about half and walked up the rock. My heart rate was about 155 going up the rock but no cramps.
My time was about the same as 2010 and I finished 2nd in my age group but well below my expectations. But I was safe and relatively unhurt, and I finished.
Aftermath: the next day the bottoms of my heels were extremely sore, hamstrings were tight. Two days later the hamstrings are tight, but the heals are OK. My back is sore from an injury in AZ...coughing while riding. I rested both Monday and Tuesday using ice and heat, plus I rolled legs and back.
Lessons:
1. Pump up tires night before.
2. Make sure helmet straps are not stuck in helmet...try it on!
3. Must train like you race! At least train in both hard runs and hard rides and Brick train....run, bike, run. My hamstrings had not seen hard running for weeks.
4. Check the transition for foot damaging rocks before deciding transition strategy.
5. Get to the race TOO early rather than JIT!
6. If you do shoe-less transitions then don't undo both shoe straps because the inner strap could get stuck in chain or Garmin sensor.
7. Garmin set-up for races: Turn auto-resume to off, set run/bike option to bike, start the workout, select the screen for heart rate/speed, lock the bezel. The bezel was especially annoying since it kept changing as it hit my sleeve or aerobars.
8. Do light stretching on the way in from the bike ride to deactivate the cramping tendency. LIGHT.
Monday, March 28, 2011
Sir Cramps Allot!
On March 27, 2011 I did the Extreme Duathlon at Enchanted Rock Texas. All was going according to plan when after about 1 1/2 hours and 2 miles from the end of bike ride my right hamstring cramped. I slowed down and attempted to stretch the muscle while continuing to move. Fortunately, it was DOWNHILL. As I approach the end of the bike ride several riders whom I had passed earlier zoomed past me much to my disappointment. At the very end the cramp settled down I undid my right shoe straps and pulled my foot from the shoe. A cramp hit my right calf muscle and I could feel my toes curl. As I came to a halt I said, "cramping, cramping!" Got off the bike by unclipping my left shoe while the right shoe remained clipped. I started to hobble to the transition area when a cramp hit my LEFT hamstring. This one was BAD. Took me about 10 minutes to slow the cramping. Tried to stretch it, etc. Drank some water. Rolled on the water bottle. Finally I could get to my feet and hobble over to the transition area. Unfortunately, I had taken off my shoes and had to deal with the sharp stones in the area. This turned out to be a big mistake as today my heals are bruised and sore. After changing back to my running shoes I headed out very slowly down the stairs of the transition and starting jogging on the trail to the rock. My heart rate was about 135 until I came to the base of the Rock. Along the way I stopped for a few seconds when I felt the left hamstring starting to flare up. During the rock climb my heart went to 155 merely by climbing/walking. I didn't run just hoping to finish which I did a minute or two slower than last year. Total moving time was 1:50 versus official time of 2:03. So between transitions and cramping time I was stopped for about 13 minutes. I was 2nd in my age group and would have won if I hadn't cramped...
I consumed about 50 oz. of electrolyte water, 3 packs of GU gel, and one pack of GU chomps or a total of 600 calories including pre-race. Had Mexican/salty the night before.
Lessons learned:
1. Stretching helps to stop/prevent cramping IF you can stretch!
2. Conditioning is critical. Lots of long slow runs/rides do not prepare you for racing at 90-92%.
3. Don't use too large of gear going up hills.
4. Don't use heavy salt the night before...thickens bloods keeping oxygen from muscles.
I consumed about 50 oz. of electrolyte water, 3 packs of GU gel, and one pack of GU chomps or a total of 600 calories including pre-race. Had Mexican/salty the night before.
Lessons learned:
1. Stretching helps to stop/prevent cramping IF you can stretch!
2. Conditioning is critical. Lots of long slow runs/rides do not prepare you for racing at 90-92%.
3. Don't use too large of gear going up hills.
4. Don't use heavy salt the night before...thickens bloods keeping oxygen from muscles.
Saturday, December 18, 2010
Starting New Routine
Changing up my gym routine after years of doing core performance work. The new routine is based on what I've seen at Dreallday.com and on youtube. The basis for the new routine is more explosive work with lower weights and rapid movements. The core of the routine are various plyometric push-ups, donkey kicks, lateral lunges, Bosu ball walkarounds, foward and backward lunges while swinging weight, vibration bar moves, static weights, mountain climbers, front and side crawls. The first recovery note is that I'm sore...with a couple of ouchy spots (left wrist and right side). Back feels great for now.
Doing more strength/endurance on the bike and running with one day a week anaerobic. Sunday AM is 2-3 hour ride at endurance pace.
Will have to see how it goes.
Doing more strength/endurance on the bike and running with one day a week anaerobic. Sunday AM is 2-3 hour ride at endurance pace.
Will have to see how it goes.
Sunday, August 29, 2010
A Blue Day
Am I beginning to feel the age? Today I've got several sore areas not the least of which is the outside anklebone on my right foot which I struck with a golf ball yesterday. Tried to hit a shot "Craig Stadler" style and the ball went off the toe and struck the bone and deflected dead right. I limped for the last hour and the bone is swelled to the point where touching it with shoes hurts. This am it's better, but I'm not riding, running or walking today.
Besides the ankle my hands are both sore from hitting many balls after Friday's disaster round. First time in months I've hit range balls because of a left hand injury caused by improper swing mechanics caused by over active hands. Knuckle joints are popping and top of left hand is still sore, but not as bad.
My weight routine on Friday included HIGH step ups which put a strain on my knees. So both knees have been a little sore off and on...no serious, no inflammation, just random pain.
During massage yesterday there were several issues found: my back was VERY tight. She beat the crap out of me.... My left hip flexor and top of crest has been tight all week off and on. My IT band was very sore especially on the left side, but on the right as well.
I had some "semi-cramping" in left calf! Lots of this might be from compensating for right ankle...or left hip..
This AM I awoke to a cold sore on my left lip.
Last two nights I stayed up way too late 2-3 am and didn't get enough sleep...although data A was 43 and 25 respectively!
My sinuses are just ok, can smell, but getting lots of crusting.
Today is a complete day of rest. In 3 weeks I'm doing a Duathlon...5 mile trail run plus 17 mile bike ride.
Besides the ankle my hands are both sore from hitting many balls after Friday's disaster round. First time in months I've hit range balls because of a left hand injury caused by improper swing mechanics caused by over active hands. Knuckle joints are popping and top of left hand is still sore, but not as bad.
My weight routine on Friday included HIGH step ups which put a strain on my knees. So both knees have been a little sore off and on...no serious, no inflammation, just random pain.
During massage yesterday there were several issues found: my back was VERY tight. She beat the crap out of me.... My left hip flexor and top of crest has been tight all week off and on. My IT band was very sore especially on the left side, but on the right as well.
I had some "semi-cramping" in left calf! Lots of this might be from compensating for right ankle...or left hip..
This AM I awoke to a cold sore on my left lip.
Last two nights I stayed up way too late 2-3 am and didn't get enough sleep...although data A was 43 and 25 respectively!
My sinuses are just ok, can smell, but getting lots of crusting.
Today is a complete day of rest. In 3 weeks I'm doing a Duathlon...5 mile trail run plus 17 mile bike ride.
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