Walnut

Subscribe to RSS Feed for recent updates
Subscribe to RSS Feed for recent updates

YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

SURVIVOR STORIES  :  DISCUSSION FORUM  :  WIVES & PARTNERS  :  TELL YOUR STORY  :  UPDATE YOUR STORY  :  DONATIONS  :  TROOP-C

YANA HOME PAGE  :  DON'T PANIC  :  GOOD NEWS!  :  DIAGNOSIS  :  SURVIVING  :  TREATMENT CHOICES  :  RESOURCES  :  ABOUT US  :  MAIL US

 

  R.I.P.     SILVER  
This is his Country or State Flag

Jeff Baker and Michelle lived in California, USA. He was 60 when he was diagnosed in October, 2005. His initial PSA was 6.29 ng/ml, his Gleason Score was 7a, and he was staged T2c. His choice of treatment was Surgery (Robotic Laparoscopic Prostatectomy). Here is his story.

I'm Jeff's wife Michelle. I have been a fan of this website for years. I have found comfort, education, understanding of the male perspective and a huge appreciation for the honest stories posted by so many afflicted gentlemen. In the beginning of our life changing experience the stories were too much for Jeff to relate to. He wasn't going to get "that bad", wasn't in "that condition" and didn't want to think that he wouldn't be cured. Now that 7 years have passed Jeff's ready to add his story in hope it helps someone else. So now that he's ready, I thought it would be good to give you a little bit of Jeff's personal history so you know what kind of man he is.

Born in 1945, he grew up with 50' & 60's music where you could sing along and dance to a good beat. He's a steak and potatoes, 3 square meals a day kind of guy. He's very independent, very good with numbers & calculations in his head, physically fit and a go getter. He's traveled the nation and the world, been a pilot, aerial photographer, a boat owner and skipper, band manager, car dealer, handyman, basic "jack of all trades" and self employed most of his life. He's had his share of drinking, smoking and partying over the years, but has really settled down. He quit smoking before I met him and these days drinks occasionally. He joined the Air Force in '63, serving 4 years, and loaded bombs on planes in Vietnam. He has a healthy respect for living and enjoying life. These days he's "retired", but keeps himself busy going to auctions to buy and re-sell whatever he finds. (It's helped up-grade a lot of nice things for our home too.) He waited a long time (age 45) to grow up and marry me (I'm 20 yrs younger, but he doesn't look much older.) After all the chances he took before I met him, I'm lucky he lived so long! To this day, Aug. 2012 at 67 he still looks good for his age and people in their 50's always think they are older than he is, a bet always lost. He's very experienced and very opinionated and can back it up. We have 2 girls that are the light of our lives and they both expect their Dad to walk them down the aisle some day. He's a great likeable man and makes friends where ever he goes. He also has a way with children and animals that is uncanny, they just gravitate to him like he's a playground or play buddy. For all the stuff that has happened these last 7 years, know that every PSA number that has gone up and down, he has always calculated the progression and speed of the changes long before I ever picked up a calculator and worried that time was short for us. Here is what has happened since 2005 in Jeff's own words.

I had elevated PSA tests in 2005 (5.72 & 6.29) and my doctor ordered a Biopsy. I was in good health otherwise and went along because the PSA numbers were elevated and the doctor wanted to be sure I was ok on the inside. I was in a car accident in September and suffered cracked right ribs. They made it hard to breathe, but not nearly as bad as getting the news in October that I had prostate cancer (PC). The biopsy came back with 11 positives. I can't remember out of how many, but it seemed very bad at the time. I opted for the Robotic Surgery because it seemed the most reliable way to get "it" out of me and go on with my life. I was 60 at the time and my two girls were 10 & 7. I had a lot of living left to do with them and didn't want PC to change that. The surgery went well. The doctor was confident he got "everything", spared the nerves and I went home to wait out the removal of the catheter. I had some minor incontinence for a couple of months and worried that I'd be wearing "diapers" for the rest of my life, but I was lucky to over come that problem, it just took some exercise, time and patience.

I know you are wondering about the sex life afterwards. The doctor said to keep working on it and prescribed Viagra, Cialis and the other one I can't think of now. They all gave me a headache and did not help at all. I can't function with a headache. I worked with the vacuum pump to keep the blood flowing, but it didn't last long enough to go all the way. Later on I tried the injection and it worked great at first. It's a mental thing to give yourself a shot like that, but I had to try. After awhile it seemed to take more and more injected medicine to keep things going and I didn't realize the shelf life was not that long. After 7 years, the treatments, lack of libido and fatigue have finally gotten to me. Still take care of the wife when she's interested, but most of the time we find comfort in cuddling. Not what my head is used to, but this curve ball was unavoidable and my family is happy to have me living and sharing the best life with them that I can.

The first year after surgery found my PSA rising in Oct. 2006. When it was supposed to be zero, it was 0.31. The doctor admitted that the surgery failed to "get it all" and ordered 39 radiation treatments of the "pelvic bed". I didn't feel any discomfort until the last 5 treatments and stuck it out. Bone and CT scans were negative. I retired from the car business this year and started going to auctions to keep myself busy.

In spring of 2007 my PSA went from 1.49 to 3.11 and really started to worry. Obviously the "get it all" had failed miserably, so had the radiation treatments, (clearly the PC had moved on to parts unknown in the last year) and I wasn't sure what would happen next. The doctor recommended Lupron shots (hormone therapy). I wanted a cure and went along with the treatments, after all they are the experts. I had 2 treatments (shots) during the year and my PSA dropped to 0.10. I did have all the Lupron side effects, weight gain, breast tissue growth, fatigue, Hot Flashes and my wife says my feminine side started to show. I took Megestrol for the hot flashes and that helped immensely. I had tried to tough out the hot flashes, but I'm very active and the Lupron would make me sweat in a freezer so I needed some relief. Megestrol really worked for me. This year I discovered I was eligible for VA benefits and compensation due to my exposure to Agent Orange in Vietnam. After sending in my application, interviews and physical exams they determined that I was 100% disabled. I have a military ID again with access to the bases in San Diego, extra money to save for the girls and VA health coverage. I've had coverage under my wife's Kaiser plan, but this gives me a second opinion on what my options are and that seems helpful.

In 2008 I was doing intermittent Lupron but it didn't last long. By Oct. my PSA was 8.63, Testosterone (T) 614 so I was back on Lupron again. Bond and CT Scans were still negative. The high PSA had me freaked out, but the doctor said it would come down with continuous Lupron. I opted for intermittent shots because I was told at some point the PC becomes immune to the Lupron and grows around it. I wanted it to be an option as long as possible while waiting for the next real cure, plus I wanted a break from the hot flashes. Test results from the VA are very close to Kaiser and I've been seeing both facilities this year.

2009 PSA came down to 1.11, whew! Testosterone (T) was 16, great!, & still on Lupron. Bone scans showed a trace of cancer in hips and vertebrae. No treatment yet. PSA went up and down like a yo-yo. I had right shoulder pain where I'd had surgery (Jan. '09) at the VA for a bone spur and it never seemed to get better. In Oct. they did a biopsy in the shoulder bone in the triangle area below the bone spur site and found PC. I wasn't feeling any pain there but the spread was bad. They ordered 10 radiation treatments. Turns out that site had been a "hot spot" for some time but they had diagnosed it as "arthritis" until now. They also added Casodex to my "recipe" this year. PSA at the end of Dec. was 1.97, T was 12. This number was un-nerving but after a couple of weeks I was still alive and mentally returned to normal. Lastly I was having a lot of knee pain and scheduled surgery to repair a "torn meniscus" in Jan 2010. This year I decided that Kaiser would take care of my primary needs and I could fall back on the VA if needed. Michelle wanted to make sure I'm getting the best care since my shoulder pain has returned after the surgery in Jan.

2010 My right shoulder pain is still real bad even after radiation. My wife can't throw her arms around my neck to hug me anymore, so now she hugs me under my arm and it works fine. Pain in my right ribs has gotten bad, making those hugs more tender to take. I've had rib pain off and on since my car accident in 2005 and always associated it with the broken ribs. A bone scan proved the ribs are compromised with bone mets and it's a real downer. The doctor admitted that the scans have shown "hot spots" there since my accident in 2005 and they also assumed it was the fractures. Now they realize that the ribs would have healed 4-5 years ago. So more radiation on the ribs. Lupron shots are getting harder to take this year as they really leave a sore spot on my backside that takes longer to heal. I hate those shots.

I had right knee surgery in Jan. but by Aug. I was limping and the pain was bad and I limped noticeably. Between the knee and the ribs I was hiding pain all the time. If the dog bumped me or someone hugged me a little bit I was clenching my teeth not to scream and hoping I didn't pass out. This year had me really worried time might be shorter than I thought, so I've been upgrading appliances and furniture at the house so I know the wife and kids will have less to worry about. My wife is on to me, but this is keeping me busy and she thinks I'm a hero. PSA at the end of the year was 2.45, T 12. The ortho doc is going to do surgery on the right knee again in Jan. 2011 as he agrees something just isn't right and thinks I have more torn meniscus. Great. I just want some pain relief. Over the last year or two I've been teaching my girls to drive. They may need to drive me around soon.

2011 was about living before it's too late. I took my girls to Maui for a memorable vacation. I got to meet my 37 year old son for the 1st time in the spring. I'd been waiting a long time for him to find out about me and want to meet me. I gained a son, daughter-in-law and 4 grandchildren at the same time. He's been a great addition to the family and we are catching up. I had foot pain, again, on the right side. I had right knee surgery in Jan and again in Sept. The Sept surgery finally did the trick and this time I did my best to take it easy. PSA in May was 3.28. Back to living, the girls and I took a 3 week summer road trip across the country and back. It was the best time with tons of memories we squeezed in. Although I wanted to ban my wife from the camera just about every day, she wrote a great story of the trip. There's nothing like seeing America and experiencing her beauty in person. When we got home I was tired and my PSA was 10, T 158. I felt like things were getting out of control, but this was only the beginning. I had another Lupron shot in Nov. my PSA was 17, T 9. We flew to visit family at Thanksgiving and I was struggling to hide my pain. My back hurt, ribs, couldn't sneeze or cough. Ribs on both sides hurt now. I found out that my cancer has been stage 4 since my bone cancer diagnosis in 2009. I was hoping that 4 was on a scale of 10, but no such luck. 4 is the top. I'm glad I didn't know that in 2009. I had another bone scan in Dec but I don't want to know the results. It's probably bad. It seems like everything on the right from the waist up hurts and now the left ribs too. It's hard to breathe or cough or sneeze. The right knee is definitely better though and I'm happy to be able to walk around as well as drive. PSA at the end of Dec. was 38, T 12. Not happy with the doubling and now my doctor says we can "try" Provenge treatments. I sure hope that works, cause it sounds good in theory and right now it's the only hope I have.

2012 I did all 3 Provenge treatments. It takes a lot of time to remove and split the blood cells and you have to be immobile for 3-4 hours. The hardest part is the needle work. If you get an in-experienced or insecure "needle pusher" it adds to the negative experience, anxiety and pain. I don't have a lot of patience and this really put me to the test. Michelle was there for every appointment and you really need someone in your corner convincing you to go through with this cause it's not normal to go through something like this and the first time can be a real deal breaker if the needle pusher blows it. There is no joke about the side effects and it's hard to tell if the treatments really work. Most importantly when I qualified for the treatment I couldn't be on any pain killers, so I was toughing out the pain. During the treatments the bone pain was so bad. The best part was I was now having pain in my right hip and pain on both sides of my spine. I had headaches that wouldn't go away and a trip to the chiropractor helped one day but not the next. I was a pain filled, limping mess. On the last day of treatment I found out that once I'd qualified for the Provenge treatment it would have been ok for me to have some pain relief rather than suffer like I had been. (Of course every nurse/doctor has a different opinion depending on the day.) I could have stopped (quit) at any time, but I hung in there hoping this would be the "cure".

Our family trip to Cozumel at the end of Feb. continued as planned. Waking up the first day was a nightmare. It was a Sunday, I couldn't breathe, I was hot, dizzy and we were in a foreign country. My wife took me to the hospital where we explained my condition as best we could. They did an x-ray and decided that I must have fractured my ribs in my sleep. They gave me some pain meds and I returned to our hotel to rest. Michelle wanted to bring me right home, but the only plans we had were to eat, get some sun and hang out with family so I talked her into staying, unless I got worse. I know she was worried sick the way she watched my every breath. It was hard to eat, but I took it easy. When we got home, my doctor couldn't find any fractures so something must have got lost in translation. At least we were back home. The doc gave me Vicodin for the pain, and he didn't think I was too bad.

By April I was going down hill. PSA at the end of March was 116, T 16. No appetite, shocks of pain from right ribs, hot flashes, fatigue, no energy, and I'm spending more time lying down and taking it easy. A bone scan showed the bone cancer was spreading in my spine, ribs and a spot on my head. I was scheduled for more radiation treatments where that doctor was surprised at how well I was doing considering the current scan. This is the month Michelle thought I'd be lucky to make it a couple of months. I had so much pain, it felt like a muscle in my back had flipped the wrong way, I was losing weight. It was a crazy time. Michelle called all the doctors, advisors, palliative care staff and nurses she had numbers for to get them to take my condition more seriously. I'd been hiding pain from everyone, but now I was scared too. This was beyond what I could do or fix. They listened and made me a recipe full of the lowest doses of Morphine, Dilaudid, Zofran and Raglan, figuring I could always increase later as needed for pain management. No more Lupron or Casodex. I stopped taking Vicodin as it gave me headaches. I had to check in with the VA to verify that I still have my PC and no prostate, they always want to check. I was so sick and in pain on the day of my VA appointment the person I met with said I could qualify for additional benefits. I talked to my family and friends about being pallbearers when the time comes. I sold off my train collection and put the family boat up for sale. I had it in my mind that time was extremely short and I didn't want to leave Michelle with having to sell off all my collections and auction stuff. It all really shook her up. Since she's 20 yrs younger, she still works and it was hard for her to leave me in such bad shape during this time. The girls were flipping out too as they had a front row seat to my pain and lack of mobility. Michelle regulated the distribution of my pain meds like a drill sergeant. It was not a fun time, physically I was falling apart and really needed help. A CT scan showed advancement to the liver and stomach and by the end of April PSA was 135. My doctor came up with a new recipe and put me on daily Zytiga (pills) and monthly Zometa injections. Something turned around. Even though my PSA has been a yo-yo every month ever since (05/10 - 134.90; 06/08 - 35.00; 07/03 - 165.20), by May I was definitely better.

June, July, August I'm still better. I'm back to my auctions and re-selling stuff. It's been fun. Still up-grading the house, still taking Morphine, Zytiga and Zometa, but I've been feeling good. I still have flares of pain with the back and ribs, but back rubs seem to help. The hot flashes are brutal now and seem to last forever (more than an hour, sometimes almost 2), my appetite is low and sometimes nothing tastes or sounds good. Ice cream is not bad though and "fills in the cracks". The Megestrol doesn't work for me anymore, so I suffer through the hot flashes now. I weighed 190 or so a few years ago and am now down to 175. I don't mind the weight loss, but the muscle loss has been hard as I'm lifting and moving stuff all the time. So I use leverage as much as possible and ask for help (sometimes) when I need it. My PSA was as high as 167 on 7/10 (a record high so far) and down to 49 on 08/08 and 35 on 08/28. To think I used to worry about the PSA going from 1.49 doubling to 3.2. The panic and anxiety I used to have over the numbers doubling over a short period of time, now takes a back seat. Michelle tracks all the PSA numbers on a spreadsheet for historical purposes, but lately they are just numbers of interest. We gauge what's going on with me based on how I feel these days, not the test results. I've been working hard a lot lately and probably over doing it the last few weeks because the pain is bad again, but this is it. I'm going to try to take it easy, live and do what I want until it comes to get me. I don't have the time or patience to sit around and wait. This fight's not over yet.

UPDATED

December 2012

My last PSA dropped to 27.7 in November. I'm so grateful it has continued to drop since the 167 it was in July. I continue to take Zytiga daily and monthly injections of Zometa. I'm taking 30mg of Morphine 3xday and am not feeling any bone pain. I have really bad hot flashes that come and go as they please. It doesn't matter how cold the weather, the hot flashes still get me. I get so tired sometimes that I just want to lay down, but I always have so much to do, I just push on. I've had a crawling sensation under the skin in my upper back and shoulders for awhile. If you've seen "The Mummy" movie with Brandon Frasier, you'll understand the feeling of bugs crawling under your skin. Yikes! I have good appetite and weigh about 185. I have the love of my wife and two girls and didn't think I'd make it to Christmas, but am still here. I'm living and enjoying the life I have and keeping busy as much as possible. The doctor doesn't have any idea how long I have left or why I've gotten so much better, but we aren't questioning it, just living. Hang in there.

UPDATED

April 2013

This if Jeff's wife Michelle with an update to Jeff's story, since November, his last few PSAs have been a yo-yo: 44 in January, 72 in March and in April dropped to 50 (after switching to Xtandi), but his testosterone which has been nauseous often. He's still taking Morphine 3xday, Calcium and Miralax. He's has neck pain lately, but it's probably stress and working too hard, so he takes Ibuprofen. He's had headaches lately too, so takes "tylenol" for that. The girls and I give him neck rubs that sometimes work and other times don't.

We moved to a new house in La Mesa, CA in March (finally found our dream house at the right price), rented our old house, sold a house and re-rented another house all at the same time. Jeff was in charge of it all, while I worked and the girls had school and dance shows. He was still on Zytiga when we moved and was having hip pain that he would mention, but he was so busy with all the coordination I let it go. He threw himself into his work that needed to get done and he was so busy, he didn't have time to think about himself or pain. He worked so hard, putting in very long days and tons of energy, he is my Superman! We had movers move our heavy stuff on one day, the rest of the stuff we moved ourselves. (The move was 15 minutes from our old house.) Now that things have settled down, Jeff's health is catching up with him and I've encouraged him to take it easy, but that's just not Jeff. When I'm not home he's always working on more than he should. When I am home, I do all I can and he tries to takes it easy. We love our new house and there has been a lot to do, but my goal is to make sure that Jeff enjoys it as much as possible. We have looked for a dream house for years and never quite found the right everything, but this house is it! We are not questioning our decision to move at this time in Jeff's life, we are going to enjoy as much as we can with him for all the time we all have left. It's terrific waking up and having a view for miles. There is still a lot that we want to do at the new house, but we can do it as we go and enjoy living right now.

For all of you reading this story, hang it there and don't give up. Hug someone you love right now, with an extra squeeze from me. You are not alone and by reading Jeff's story we know we are not alone either. Best Wishes, God Bless...Michelle

UPDATED

May 2013

I (Michelle, Jeff's wife) see there was a glitch with the last post. Sorry that most of the important information got spliced out. Here is the latest update. PSA was 51.53 on last test. Testosterone which has been quality of life is as important as fighting this disease. They want to help make him comfortable and hospice is also available. I worry what they are not saying out loud here, but they insisted they want us to know what the options available are while Jeff is healthy, so we know that we are not alone. We aren't giving up! Best Wishes to all the fighters out there! Michelle

UPDATED

September 2013

Jeff started Xtandi in March and stopped taking it in June because it was making him sicker. He had another Lupron shot in May because his testoserone was 281. In June his PSA was 90 with testoserone <3. In July the Lupron must have kicked in because in July the PSA dropped to 41. Since August Jeff's bone pain has increased in his hips and back. He's currently on Morphine, Dilaudid, Prednisone, something for nausea, Zometa once a month and can't afford to skip a day of Miralax. He met with the oncologist yesterday who has ordered a full body bone scan so he can get Jeff on Xofigo. I haven't updated our sex life in the past, but to keep it simple, it's been gone for awhile. Jeff never wanted to give up on it, but the Viagra/Cialis/etc just gave him headaches and it defeated the purpose. Jeff is still working harder than he should and was stoked to make it through his 68th birthday in August. His quality of life is so important to me, that we live around his wants and needs. He gives us all so much all the time, we can't do enough for him. He is my hero and I love him with all my heart. Hugs and Strength to all you fighters out there - Michelle.

UPDATED

November 2013

Hi it's Michelle updating Jeff's story. His last PSA was 99.3. Since my last post, he's passed a kidney stone, had pnemonia (recovered from both after predicting both) and has been fighting increasing back pain, which we found out is due to 2 compression fractures in his back and spreading bone cancer. He said it feels like he has a knife in his back all the time, some parts of the day are worse than others. His recipe for pain management has been increased and he tries to take all them pills on a regular basis, but he's a busy man. He finally understands that he need to take the pain meds in a timely fashion and can't keep lifting heavy stuff. The palliative doctor just about flipped when Jeff asked him if he had to limit lifting more than 50 lbs now. The doctor said Jeff's limit should be 1-3 lbs, which did not go over well with Jeff, but the pain is convincing him to limited his lifting and the girls and I are trying to help him as much as we can to keep him from adding to his painful condition. He recently had his 1st Xofigo injection and we can't tell that it's working or not. He still has monthly Zometa injections. He's as tired as ever, the hot flashes have not slowed down one bit and now that it's getting cooler, he'll get the chills after trying to cool down from a hot flash. Jeff could sleep for about 6 hours before tossing and turning from the increase in pain during the night, then he'd get up, walk around or sit on the couch for awhile, but that stopped working this last weekend, so it's been real hard to get comfortable. With the increase in the back pain it's hard to get a good night sleep, so he just started taking Valium that has helped for a couple nights so far. He was hoping to qualify for a "concrete spine injection", but the doctor called today to say it just won't work for Jeff, but he can try radiation again. Hopefully that can be scheduled soon as we need to get Jeff some pain relief now. I wish he could go back on Zytiga, that saved him last year, but the Oncologist said it stopped working after 11 months and that's it for now. He's keeping himself extremely busy with "money pit" drama at the new house, so he doesn't have a lot of time to dwell right now. I'm sure we are going to find him some pain relief in the next week. He's got a turkey to cook for Thanksgiving and he's so looking forward to it and we are so thankful to enjoy another holiday together. Wishing you all the blessings and love of family this Thanksgiving. Hang in there all you fighters!! Michelle

UPDATED

April 2014

Hi, It's Michelle. I'm sad to report that Jeff passed away on March 20, 2014 after putting up a great fight.

Since his kidney stone in Sept. 2013, he'd had a blood clot in his lung the day before Thanksgiving. They put him on Coumadin and he seemed to get cuts and bruises so easily. We never went anywhere without a box of bandaids. In Dec. 2013 he was having more bone pain and they found the bone mets had spread more places in his spine, so more radiation. He was still having Zometa injections monthly and Xofigo every 4 weeks. By Christmas the "knife in his back" pain was back again.

In January 2014 Jeff had more back pain, spasms, uncontrollable hot flashes followed by severe chills. He would get a hot flash walking across the room and the water would just pour out of him, sometimes for hours. He was still keeping busy, but so miserable moving around and having water drip off his face and neck. He was so embarrassed when we'd meet for lunch and the water would drip for no reason. He was taking 90 mg of Morphine 3 x day, 4 mg Dilaudid every 4 hours for pain and Prednisone (super powers pill).

In February 2014 he had a trip to the ER as he'd not been feeling well and the sides of his back were in so much pain. An MRI showed that there was one bone in his back that hadn't been radiated in all the prior treatments and the cancer had grown a spur that was compressing on his spine. Radiation was ordered and started right away along with a huge change in medicine (I call it the Recipe). He was on a combination of drugs to keep him safe and comfortable during the radiation treatments. (Recipe included: Gabapentin, Dexamethasone, Morphine, Diluadid, Ranitidine, Venlafaxine, Megestrol, Levithroid, "Swish & Swallow", Reglan, Calcium and Coumadin.) The biggest thing we missed was the side effect of the steroids. For the radiation they took him off Prednisone, replacing it with Dexamethasone (Dex). He was taking Dex 3x a day, after a few days he thought it was making his face fat, so the doctor agreed to lower the dose, by the time he was on his last treatment on March 10th he was down to 1/2 pill a day. The next day, 11th, he couldn't wake up, he was so groggy I had to take him to the ER to see if there was something more going on with the spine or something affecting his brain. They couldn't find anything wrong after running a bunch of tests and he was ok to go home. On the way home, we realized that in cutting back the Dex to 1/2 pill he was too low on the steroids he'd been taking and needed the Prednisone to keep him going. On the 12th he was back on Prednisone, but in rough shape and stayed home relaxing. Thursday and Friday, he could only work for an hour or two and then was sweating and worn out. We had his sisters and brother-in-law visiting and everyone was pitching in to help.

He had a terrific weekend the 15th & 16th with family and friends, then Jeff woke up on Monday, the 17th with serious problems. He collapsed in my arms and stopped breathing. My brother-in-law, Denny, who is also a PC survivor, did a few chest compressions that got him going again, but Jeff was in big trouble and the pained expression on his face, still haunts me. Jeff would turn out to be suffering from internal bleeding and pneumonia. The doctors ignored the bone pain issue and the labored breathing while they worked so hard to get blood transfusions in to increase Jeff's blood count from a 3.5, back to at least 10 so they could run a scope to see where he was bleeding. (We had no idea where the bleeding came from or how it started, we didn't see anything.) In the meantime his breathing became so labored, that the fight to save his life changed. If the breathing couldn't get under control, they couldn't do the scope and no one thought we'd be losing him in a matter of days. New doctors were treating him and thought he looked so young for 68, they could not let him go or give up. He was so miserable. He couldn't tolerate the breathing treatments they were trying to do, the Bi-PAP freaked him out and hated the continuous blood tests, needle misses and test re-dos were outrageous By Wednesday, March 19th, he decided it was time to let him go. The bone pain was bad, the breathing had been short, fast breaths since Monday and he knew he wasn't getting better. He was suffering and couldn't take it anymore. It broke my heart, but I'd been watching him suffer all week and wondering how long he could go on like that. His thoughts were, even if he could make it out of this mess, how long until the next trip to the ER. Kaiser put him in a room for "Comfort Care" so family and friends could say their last goodbyes. It was hard watching him continue to have such labored breathing and the doctors had to keep increasing the dose of medicines, because he was not having "comfort care" for a long time. Finally at 2:55 am on March 20th his breathing finally stopped being labored and slowed down. My heart broke when I realized how long, since Monday morning, he'd been suffering from the labor of breathing so hard, to now finally see his face and body relax. He slowed down and finally took his very last breath at 3:15 am with my daughter Cassidy and I each holding a hand and keeping him safe. He's safe now, no more pain and no more suffering. Rest in Peace Jeffrey. Love Always, Michelle

As an additional note for the fighters and their families. I learned a few important things during Jeff's fight against this disease I'd like to share: Never leave him at the hospital alone. Make sure the doctors maintain the pain management regardless of the lack of pain, because it does catch up and you never want to be behind it. Jeff never wanted IVs or blood test done in his hands - you have to fight for that because the hands are an easy target and when you're not there the needle pushers do what they want, especially if he's sleeping. Don't wait to let people say goodbye. Learn how to handle a urinal and be there for your man, don't wait for a nurse, it'll always be too late. You can stop the nurses/doctors from doing anything that causes him pain. He and you can say "STOP" or "NO" and it's ok. Make sure you understand what the treatment plan is and ask for clarification. They are here to help you, make sure they explain it so you can understand. Make sure all pain meds are taken (at home) on a regular basis, even if you have to put pills in a Ziploc bag with a time to take them written on it. Never let him get behind on his pain management recipe, that's all that kept Jeff going for so long at times. Lastly those "hot flashes" at the end that would last for hours, I realize now that couldn't have been hot flashes, that was Jeff's body fighting the infection and spread of the disease. It should have been caught by the doctors, but then again they thought Jeff had broken ribs for 4 years before finding out he had bone mets in his ribs and spine.

I'm grateful he fought so long, he was so brave and I'm glad he's not suffering or having to hide pain anymore. He was amazing and I'm lucky to have shared his life for 23 years.

I'm here for anyone with questions and wish everyone success with their treatments! Keep up the fight

Michelle's e-mail address is: jmckbaker@hotmail.com


RETURN TO INDEX : RETURN TO HOME PAGE LINKS