I’m not sure where to start….
Just when things seemed to be getting a little better last week, on Friday things once again changed. The only way I have been able to describe the change is my equilibrium is off. If I remain seated to read, watch TV or use the computer, things are pretty normal. When I get up and try to walk, I am not very stable on my feet. It’s not dizzy, more a feeling of being unbalanced. It applies to standing up, sitting up or moving my head. Yes, it is limiting me just a bit.
I made it through the weekend and on Monday I had my monthly oncologist appointment. After going through a few tests in the exam room, Dr. V ordered an MRI of my head and upper spine. It was all clear. He sent us home with two prescriptions to try to treat the symptom, even though we did not know the source, but after a few days, there was no relief.
Tuesday, we went to the Medical Center and I had my kidney stents replaced. It is hard to believe that three months have passed. The procedure went very smoothly. The surgeon reported that everything looked clear and he suggested that based on the condition of the stents that were removed, we can wait 4 months before we have to go through this procedure again. Obviously, I don’t want to go through this any more frequently than I have to, so this was good news.
Today we went back to the hospital for a spinal tap. Dr. V wants to make sure the cancer has not spread to my spinal fluid (extremely rare). Right now this is about all we know. We don’t fully understand what all of the possible sources of this new symptom are. We are just hopeful that it is something that will be easily treatable.
In addition to fighting this new issue, I am still in the battle to get the prostate cancer under control. My PSA is now up to 1,200. Given my last visit to the hospital with a blood infection, we are not ready to start chemo again. We are anxious to start a clinical trial for MDV3100. It is a treatment that we have been tracking for a while. Logistically, the closest medical facility offering this trial is in Lincoln, Nebraska. It will be a 3 to 4 hour drive each way, but at least it does not require a plane ride to get there.
The last week has been exhausting for our family, but we continue to be optimistic and are hopeful that we will find the right treatment that will allow me to get stronger and move towards a more stable daily regimen.
After ten days in the hospital ,I was released and returned home late Monday afternoon.
I have to admit, I was a bit apprehensive to leave this time. Yes, there is nothing better than being home, but after everything I was treated for, I felt secure that I was being taken care of and if something else were to go wrong, I was confident that my medical team was there to take care of me. There were so many medical issues, that it became overwhelming for me mentally as well as physically. The staff on the Oncology floor at KU Med Center is top notch!
After two days, we are settling in to a bit of a routine, but I have a long road to recovery. What became obvious real fast was how quickly a week in the hospital can drain one of strength. I had a visit from a physical therapist yesterday and have already begun to slowly work on some light exercises. Mary and I were reassurred after she tested my strength and balance. She indicated that I was stronger than she expected me to be. I hope to work towards my morning walks with Mary up to the end of our street, and hopefully further.
The rest of this week, as well as the next, we will focus on recovery. After that we will meet with my oncologist on the 13th to determine what treatment plan I begin and when I begin. Also, we will be preparing for my scheduled procedure to have my stents replaced on August 14th. Yes, three months have already passed.
The road ahead is sure to a rough one, but I have Mary at my side, and God leading the way. It won’t be easy, but neither have many, many parts of this journey battling prostate cancer. I would like to express my sincere appreciation to my brother and sister in law for their vigilant support for all of us during a very difficult week. Also, I’d like to thank you all for the encouragement and support that you have shared with us over this last week, as well as over the past 7+ years. The battle is not over!
I (Mary) am writing this post on behalf of David. We wanted to provide an update regarding the events of the past week.
The highlight of the week was the opportunity to host the third annual. ‘FLHW Warrior Combine’. It was a beautiful July morning. We had a wonderful group of men participate, both regarding athleticism, as well as camaraderie. Money was raised to support advanced prostate cancer treatment research and additionally, we were able to promote the importance of early detection in beating the battle against prostate cancer. We had an exceptional newsteam join us who helped us to promote our message. If at least one man saw the story and decided to go get tested, then it was all well worth it. Below is the link to the story. It also contains the video:
Many thanks to Jason for selecting FLHW to be the recipient charity for this wonderful event.
Also, our sincere appreciation goes out to those who sponsored the event, as well as to the volunteers and those that came out to cheer the warriors on, including the Chiefs Cheerleaders that dedicated their time to support our cause. The event seems to get better with each passing year, and is fun for all! David was able to watch the event from the side lines. He enjoyed visiting with friends and family and watching the competition. The enthusiasm and energy of those participating was infectious.
The final event was completed, the scores were tallied and the warrior champions were announced. We were able to clean up and head home by 11:00 AM, just as the summer temps started to climb.
David’s sisters were in town for a visit, so we all went home, had a little brunch and decided it was time for a nap after an early and hectic morning. Later that afternoon, David commented that he was cold. I walked toward him and realized he was shivering. Touching his forehead, he was burning up. I immediately took his temperature and it was 104 degrees. Since a fever is one of the warning signs for infection when on chemotherapy, I immediately called the oncologist and David was soon admitted to the hospital. This is where our trend continues, April, May and June all included hospital visits, and unfortunately, July did not pass by without another trip to KU Med Center. After a lot of testing, it was determined David had an infection that settled as a urinary tract infection and then spread to his blood. Additionally, his blood pressure was extremely low coupled with a very high heart rate. Sunday morning, he was moved to ICU. He was not responding to the initial antibiotics that he was given and the doctors were unable to get his blood pressure back to a normal level. Finally, Monday evening progress was made and his blood pressure was improving. Late Tuesday afternoon he was moved back down to the oncology floor. His progress is slow and steady. He will be in the hospital until at least Monday. Each and every member of the staff that has assisted us during this visit have been amazing. Their compassion and positive attitudes while caring for David have been a source of comfort for both David as well as for our family. David’s spirits are good and we look forward to him returning home early next week. As always, we will be taking it one day at a time.
Yesterday I finished my first cycle (three treatments, one each on the past three Mondays). Now I have a break next Monday and I hope to spend the time recovering with the week off. I am happy to report I have very few side effects.
Fatigue has been the main issue and it comes sporadically. Some days it’s in the morning, but most days it seems to come late in the evenings, after dinner. For the most part it feels like a real bad flu without the fever. Last night after treatment I was watching TV in bed by 6:30PM and fighting a nap. The reason I was fighting the nap was so that I would be able to get sleep later on in the middle of the night. For the most part I was able to stay awake, except for a 45 minute nap around 8pm. I was able to go to bed at a somewhat normal bedtime, I finally turned off the TV a little after 11pm. Except for one bathroom break and less than an hour of television at 2am, I slept great.
Today as I write this, it is already early evening and not only have made it through the day without a nap, I am in no need of sleep at this time. Mary and I might even get to watch a movie tonight! It doesn’t take much for me to remind myself how much worse things could be. I could be sleeping constantly, dealing with other known side effects, or be back to where I was several weeks ago and be in need of far more pain meds than I am currently on.
One change we did agree to with the doctor yesterday was to adjust both my pain meds and steroid down slightly. The first change was to reduce the steroid (Dexamethasone) by half. I started yesterday afternoon and we’ll give it a few days to make sure we don’t cause any pain to resurface. If all goes well with reducing the steroid, in a week or so we will pursue further reduction of my pain medication. Mary has helped me to slowly transition the dose of my pain medication so that I no longer take any break through med and have stretched out the slow release med from 2 every 8 hours to 2 every 12 hours. Once we feel I am stabilized with the new steroid dosage, we are going to try changing the pain med to 1 pill every 8 hours. Hopefully, I will continue to tolerate the chemo well and the pain will continue to not be an issue. Being on less pain medication allows me to be more interactive and to mentally focus more easily. I am able to enjoy reading again.
Now that cycle 1 is complete, I hope the changes work, I pray for sound sleep at night and days that don’t require too many naps! Thank you for your continued prayers and positive thoughts.
For any readers in the Seattle area, I’d like to pass along this information about an upcoming golf tournament. The event is August 3rd and the beneficiary is the Prostate Cancer Foundation. Details can be found from this link:
On Monday I had my first dose of chemo, the first of three during this cycle. The cycles will be 1, one hour dose once a week for three weeks, and then a week off. We haven’t determined how many cycles I will be taking. I guess it depends on how I respond and what happens with my PSA and how I am doing over all. Happy that the infusion is only an hour, but just so you understand what is involved, it actually takes about 6 hours in full for the 1 hour infusion. First, I have to have labs so they can check my blood, then a quick visit with the doctor and then we wait for the pharmacy to prepare the meds. I receive several pre meds interveniously before I actually receive the Taxotere. Mary is at my side through the whole process, so we talk and keep each other company, so the time passes fairly quickly.
We did receive good news in conjunction with all of the testing on Monday, my PSA dropped from 1,539 (June 19th) to 975 (July 2nd). We pray this is a premonition for things to come with the chemo!
Also, and very importantly, the pathology test from the fluid that was removed from my lungs came back negative, so there were no malignant cancer cells in the fluid, hence, not cancerous tumors on my lungs. That was a great relief!
As for side effects from the first chemo treatment, I have nothing to report after two days. Instead of the steroids keeping me awake, I actually slept quite well Monday night. Last night I was feeling ‘normal’ enough that we decided to go out for dinner instead of heating up the house. Nothing fancy, but it sure was good to get out of the house! The pain is still being managed with long acting pain medicine and no break through pain meds are required. I am happy to be on less pain medication, as it allows me to be more alert and feel like my ol’ self.
Today will be a very hot fourth of July. I hope everyone manages to stay cool and has a nice day filled with fun and happiness with family and friends. Happy fourth!
I was released from the hospital late Monday afternoon. My procedure that morning went well. They removed almost 2 liters of fluid from my left lung. That’s right….2 liters. No wonder I was having difficulty breathing! The fluid was sent to pathology to be tested. We have not yet received the results. The test will determine if there are cancer cells present. If so, that will mean the cancer has spread to my lung. If not present, it is caused by infection or pneumonia. I was on heavy duty antibiotics in case there is infection or pneumonia.
In addition to the blood clot on my shoulder, there are several blood clots on my left lung. I am on blood thinner to dissolve them. That means I am back to giving myself twice daily shots of Lovenox in the stomach.
Taking the slow release pain meds 3 times daily, instead of twice has made a huge difference. I am now taking 1 break thru pain med every 8 hours instead of 2 to 3 every 4 hours. We have a lot going on, but not having the pain is wonderful.
I am still experiencing edema in both legs and feet. It had all but gone away, but since I was in the hospital, the swelling is persistent. I am sleeping with my feet up and moving around much more, but taking intermittent breaks to try to relieve the swelling a bit.
We are planning to start chemo Monday morning. Instead of taking 1 large dose every 3 weeks, I will have a smaller dose once a week for 3 weeks and then have a week off. I am in good spirits and am hopeful that the chemo will shrink the cancer and enable us to resume a normal lifestyle once again.
Although we didn’t plan to see the doctor until Monday…we didn’t quite make it….
On Thursday l had a a few bouts of shortness of breath in addition to the continued swelling in my left arm. When we finally received a call back from the doctor’s office late Friday afternoon, they asked us to go to the ER for a few blood tests and a chest x-ray. After waiting far too long in the reception area of the ER (4 hours) we were placed in an ER exam room. 7 more hours there, which included a blood draw, a visit from an ER doctor and a chest xray and 2 sonograms, we were admitted to a room. 11 hours from when we arrived to the ER….Yes, Mary and I walked into the room at 4:00AM.
My oncologist paid us a visit Saturday morning.He informed us that I do have a blood clot in my left shoulder. (This explains the swelling in my left arm). It also appears I have some small clots on my lungs. Additionally, I have fluid in the lining between my left lung and rib cage. It could be a growth of the cancer or the clot in my arm spreading further. The liquid will be drained on Monday and further tests will be run to determine the source. While we wait for Monday, I started on blood thinners and several antibiotics.
In either case, clot or further metastasis of the primary cancer, we agreed that starting chemo was something we need to start sooner rather than later. The chemo of choice will be Taxotere once again. Unlike when I had chemo in 2008, and received it once every three weeks, this time I will receive smaller doses, once a week for three weeks and then one week off. The intent of this regimen is that it will hopefully be less toxic, to better allow my body to recover in between doses.
We will continue to consider radiation as a way to relieve the pain.The pain meds have gotten the pain under control, so if we decide that taking chemo and radiation at the same time may be too much for me, we will forgo the radiation to get the chemo going to fight the cancer. For now, the clinical trials are on hold for the time being.
Thinking about the cancer spreading to my lung is clearly concerning. We continue to stay positive and keep the hope alive that we can get this pc demon in my body under control and that we will be able to resume to some semblance of normalcy.
On Monday I had my monthly Oncology appointment which included two shots, blood work and a brief meeting with the doctor. Due to my increased pain, which was becoming paralyzing, we wanted to talk further with the doctor to discuss treatment options and to develop a new plan of attack for these persistent PC cells that seem to be taking over my body. We went back today and talked with him about the treatments out there and a longer term plan.
Dr. V increased my pain meds and changed the steroid I am taking. I noticed changes for the better from both. I slept much better last night and overall, the pain decreased.
A bone scan was ordered and is scheduled for tomorrow afternoon. The primary objective of the scan is to identify tumors that would be considered ‘hot spots’. They may be the main source of my pain and could be targeted with radiation. Consequently, once my oncologist receives the scan results, he will talk with my Radiation Oncologist. We will meet with the RO on Tuesday morning to find out if he thinks there is a radiation therapy that may alleviate my pain. We also discussed chemotherapy and the two early access trials I mentioned here last week. In order to receive the treatments in early access, I would have to be approved and of course, both would involve travel as well. In order to consider treatments with travel, I will have to first get my pain under control. Having spent seven consecutive days in bed, it was all I could do this week just to get to the KU cancer center.
For now we won’t look too far ahead. We are praying the new doses of pain medicine will continue to counter my pain. On Monday we will head back to the cancer center to discuss the bone scan results with the oncologist and will also have a follow up consult with the surgeon who performed my surgery in May.
That is all for now. We are taking things one day at a time.Thank you for your past and continued prayers. It really helps to know we have all the support that we do!!