6-26-10 "When I consider your heavens, the work of your fingers, the moon and the stars, which you have set in place, what is man that you are mindful of him, the son of man that you care for him?" Psalm 8:3-4 Why do you suppose in God's design He hung that rock we call the moon in the sky for us to see each day? If you have a chance during the next full moon, TONIGHT, take some time to consider the heavens.
On a clear night you can see the moon shining bright surrounded by the darkness of the night sky. With a pair of binoculars you can see the scarred up lunar surface covered with ancient craters. I'm sure you all remember your science lesson that teaches us the moon does not generate light of it's own. The moon's surface is a dark lifeless satellite that orbits the earth and the light we actually see is the sun's reflection.
The moon is a good picture of God's relationship with His children. Consider this... The sun, is Jesus - the life and light of the world. The moon, is us - spiritually lifeless, dark and blemished. Like the moon, we are called to reflect His light in a dark world.
So the next time you see a full moon don't just give it a quick glance and move on but take some time to "consider the heavens" and the light designed to touch you
2 Samuel 22:29 "You are my lamp, O LORD; the Lord turns my darkness into light."
6-11-010 I wanted to give you guys an update as to my health status. I have talked to some of you recently but feel the need to summarize to everyone the latest. In general my condition has worsen in the past few weeks.
My lungs are failing more and more rapidly. Breathing is becoming increasingly difficult. I'm on O2 full time again. The hospice Dr. and nurse have explained that the cancer is advancing in my lungs to the point where my air exchange is even more compromised due to the cancer scaring and inflammation to the lung tissue. In addition... my cancer pain (lung, bone and nerve pain) has kicked in. I no longer have an appetite which is really weird. I have no desire to eat? When I do eat, even if in small amounts, I get an uncomfortable fullness feeling in my stomach.
The hospice nurse said all these are signs of the cancer advancing and showing up as problems in multiple places. She suggested that I start on morphine to ease the discomfort and symptoms. At first I resisted because I don't like how morphine makes me drowsy and fogs my mind. She assured me that after a few days I would be able to handle it better without those negative effects. I'm such a light weight druggie. She was right, after two days of sleeping I'm liking it better. I've since learned that morphine not only addresses the pain but somehow it also helps me breath. I like that!
Anyway, Anne asked the nurse based on my current condition and the rate of progression how long do I have? She responded by saying she would guess a few weeks but she yielded to a more accurate estimate. She said... ask Tom, he would have a better idea. Her news and comment shocked me as I realized once again my denial blinders had to come off. All I can do is make another payment and move through this.
The truth is I don't know when I'm going to die. I do feel worse but after considering everything I have returned to a place where I "let go". I do sense a wrapping up of sorts and I guess that's ok. Anne asked me the other night when did I first let go. I told her that I have been letting go for over a year but now I'm moving toward a much deeper level. I want you all to know that God has given me a deep peace. Honestly... I go in and out of His peace but the hope always remains.
I heard this song for the first time this morning and I want to share it with all of you. It serves as a means to express my feelings right now. Thank you for all your support and love especially in the past year. You have truly carried me... and I want you to know I'm eternally grateful.
Love, Tom
Check out this video on YouTube:
http://www.youtube.com/watch?v=EMZj0520v0g&feature=youtube_gdata
3-31-10 I can’t believe it’s been a year now since I was first diagnosed with cancer. Looking back, I honestly didn’t expect to survive this long. It was on Good Friday… how fitting that I received my death sentence. As the weeks progressed into months, I worked through the initial shock and began to see life through a different lens - a lens of pain and suffering. I often wonder about my relative longevity, the purpose of this season and what’s ahead. During the last month, I’ve noticed a gradual decline of my energy and strength. I struggle with the eventual reality that I am becoming weaker and losing my grip. As I lay in bed today, I thought of my Dad’s anger when he wrestled with his early stages of Alzheimer’s years before he died. You see, he knew… he was slowly losing his cognitive mind and he worked hard to keep this harsh reality privately to himself. In time his symptoms deteriorated and his predicament became visible to those of us around him. I can only imagine how frustrating it must have been for him to lose his dignity as the relentless progression of dementia took his identity away. He eventually transitioned to a place where he could no longer remember his past, grasp the future or even recognize his own love ones. Yet in spite of it all, as Dad’s soul and spirit remained unscathed he gave his family one final lesson. He taught us the priceless gift of living in the “present”… the only place where life really happens.
Similarly, my body is broken plagued by a crashing fatigue due to a systemic aggressive cancer. No one really knows what lies ahead. I find myself applying the lesson of living in the “present” like my Dad letting go of my past and future. Unlike my Dad, my mind has not been affected so far… something I’m grateful for and the reason why I want to share my heart like this before I no longer can. There is much to learn from all of this so I continue to search for the final gifts along the way.
The last few weeks have got me thinking as my bad days have out numbered the good. How easy I forget and or ignore… stupid me, the triggers of my illness “stress” and “overexertion”. I crave for independent control of this ship that has run off course! Through all the ups and downs in the last year, I’ve learned something worth sharing. That is… nothing is gained by glossing over life’s cruel lessons or on the other hand nothing is gained by yielding to blatant panic. Eventually, I wise up and returned to what’s becoming a more familiar and restorative place for me… a place of dependence and trust. If only I could completely surrender, accept my limits and permanently pitch my tent there… all would be well. So goes the battle…
My daughter Kristen came by for a visit recently and saw me on one of my bad days. She was very concerned and frustrated for me. I tried to explain how my body is failing and the effect it has on my overall viewpoint. It’s hard to describe to people the truth of my reality... things are so different because of my circumstances it‘s strange sorting it all out. I told her I’m currently on a lonely stretch of this journey and I have to travel it alone. I feel a sense of emotional and spiritual transitioning from this familiar world. I want to be real and walk this part in honesty even though it’s difficult to hear that I’m losing my desire… my fight… my passion. I want all of you to know these feelings I am experiencing are typical and very characteristic among the chronically ill. I don’t want to give the wrong impression here. I am not quitting… far from it, but I do feel a necessary sense of “letting go” somehow.
I find myself getting away to be alone to think stuff through more and more these days. One monumental lesson I’ve learned is… all my life I have had a bent to hide my flaws and weakness. After all, who wants to admit they are broken and vulnerable. The truth is… I have not met one single person who doesn’t have their own brokenness. Have you? So why is it that we (I’m assuming you are like me) struggle with this reality and work so hard to redefine, rationalize, deny or ignore our weakness? I don’t know about you but my answer is pride - a stumbling block throughout my life. Through the lens of my illness I’ve learned when I acknowledge my brokenness get real and vulnerable I find a sense of freedom and in that freedom resides true intimacy.
Another observation I had… is about our culture’s view of life. Everyone enjoys and celebrates the miracle of birth - the beginning of life and rightly so but we sure struggle with the other end of life… don’t we? I don’t know maybe it’s because we were insulated from death and dying when we were growing up. We learned that death is something to avoid because it’s such a frightening thing, so unnerving, so messy and so hopeless. The truth is my passing undoubtedly will involve a season of grief but it will not be the end of our relationship, only an interruption. Remember, you faithful believers, I will not be “lost” because you know where I will be. I will be experiencing the joy of Christ’s presence in a place so wonderful that Christ called it Paradise. And one day, we’re told, in a magnificent reunion, we “will be with the Lord forever. Therefore encourage each other with these words.” (1 Thessalonians 4:17-18).
In closing, my desire is that I view the rest of life and death through a lens of this kind of hope. The longer I have the opportunity to travel this side of heaven the more clearly I can see and appreciate the impact of God’s enormous love for me. He has been so gracious and patient with me every step of the way and thankfully saving me from myself. I look forward to celebrating another Good Friday, death sentence and all, touching the hope of Jesus and his empty tomb.
Love, Tom
2-21-10 Just a quick note... I'm doing better since the last vertigo episode. I have it only now when I lay down and get up. Other good news... I've been able to get off the O2 for the last few weeks. It really feels good to cut free from the oxygen leash. Anne and I were going nuts with cabin fever so we drove up the California Coast and enjoyed a get away weekend together in Santa Barbara. Other changes... I am experiencing a new chronic pain in my back near my left shoulder blade. The pain at times gets pretty bad so I take morphine for relief. I also had a few coughing spells that scared me when I coughed up blood from my lungs. It was a living color reminder that woke me up from my denial.
I got permission from my daughter Shannon to share with you a poem she wrote on her plane ride home from a recent visit. Needless to say I was touched by her ability to access her heart and express her feelings with such depth. I thought it was too good not to share with you all.
Love, Tom
Hope by Shannon
For some time we will have to wait,
He'll watch and pray,
It will feel too late.
But His promise will remain,
what feels like loss is in truth gain
For he will be finally made whole
Still my father, an unchanged soul
So how can I continue to cry
is it really fair to keep asking why?
For there is eternal life after Earth
Which makes his death as beautiful as birth
The why will slowly fade
Because my doubts have already been paid
And so for that spec of time that we will be apart,
I will hold him here, close to my heart
2-03-10 I know when it’s time for another update when I get a spike in emails and calls with concerns about how I’m doing. I did have an issue last Wednesday morning that might have touched things off. I was lying in bed, taking it easy, when after simply adjusting my pillow I experienced what turned out to be vertigo. I always have an earthquake tuck away in the back of my mind living here in CA and to be ready… but this vertigo felt like a 12.5 on the Richter scale. It was pretty scary! I didn’t know what hit me or what to do. The whole room spun and my bed felt like it was tilted up to the point that I was going to fall out onto the floor. I thought I was losing my mind. What a weird experience. It’s been a week now and I’m still spinning walking around making every effort to keep my balance as if I were on rocking boat.
My brothers Jim and Kevin flew in on Friday for a weekend visit. Unfortunately, the medication I was given knocked me out for hours. There wasn’t much I could do but lay in bed or sit on the couch. Jim and Kevin were good about it all and took on the role of my baby sitters for the weekend. We spent the weekend playing WII and watching golf and football. I did manage to get out for lunch and a walk on the beach with Jim and Anne on Monday.
Dr. Graham from Hospice dropped by today. He assured me that the vertigo was a very common thing and it had nothing to do with my cancer. He said it should go away in another week or so. Dr Graham reminded me that although my cancer is systemic it remains microscopic which is better than dealing with a large tumor mass. As long as my appetite is strong and immune system remain as it has been I should have every reason to “think ahead” to many more good days.
I have enjoyed the recent visits of family and friends these past few weeks. The encouragement and humor keeps my outlook up. I am looking forward to a spin free zone in the next few weeks and getting out more to enjoy the beautiful San Diego spring time... the blossoms have already sprouted. It always seems appropriate to end my updates with a heart felt thank you for all your support and prayers.
Love, Tom
1-10-10 Wow! It’s been a long time since my last update. I want apologize for that! In hind sight, I shouldn’t wait so long in sharing good news. I’ve had the benefit of a plateau of sorts with my symptoms the past eight weeks. As a matter of fact, I’m now into my ninth month since my first diagnosis and relatively speaking my health has been pretty good. I have slowed down some and am limited because of my low energy and restricted breathing so I need to pace myself and allow resting time throughout the day. As long as I listen to my body I get through each day without any trouble. It’s nothing short of God’s Grace for which Anne and I are thankful. I eat and sleep normal, no pain, no mind altering drugs required, I gained my weight back and holding now at my high school weight. Not bad… huh! So here we are… hanging in there against all the odds preparing for what lies ahead in 2010. We had a good Christmas with the kids. We all just hung out together and stayed close to home. We had fun battling each other in a new Wii game – 2010 Winter Olympics. We tested our endurance in our customary card game called Progressive Gin… otherwise known by some as “Aggressive Gin”. I’m pretty sure I lost my long standing bad reputation of being a card hog to Shannon’s boyfriend T.C. He is definitely the black hole of all cards. Warning: do not sit next to him.
New Years Eve was safe and sane as Anne and I went to see “The Blind Side” with Sandra Bullock and Tim McGraw. It was a true, good feeling movie… but let me just say, I’d would rather listen Tim McGraw’s sing (FYI - I can’t stand country music) than to watch his acting. He was terrible! Anyway, I’m getting way off track.
I want to say THANK YOU to the countless family and friends who have showered Anne and I with your prayers and financial support. The encouragement that you provide… leads Anne and I to a wonderful heartfelt place of surrender and trust. It’s so humbling to be on the receiving end of so much love and we want you to KNOW how grateful we both are. Consequently, we are encouraged to be at peace and draw close to God in the midst of this stormy journey.
Love to you all!
Tom and Anne
PS. I finally received my 11 year old CT scans I requested from Group Heath Hospital… only eight months after I requested them.
11-17-09 I just checked and the last time I personally wrote an update was over five weeks ago. I can't believe it! So much has happened but I won't even attempt... to give a recap. My sisters have done a great job of stepping in to keep you current on my behalf. In a nut shell, the Pleurodesis procedure (lung sealing) was a complete success and very much worth the temporary setback. I did take a beating during those two weeks in the hospital and would rather try and forget it all. My hospice nurse, Julie, was by yesterday and reported that both my lungs sound completely clear - no fluid. The endless supply cancerous fluid has stopped collecting around my lungs. What a relief!! I have been on steady oxygen since I've returned home but even that is improving in the last couple of days where I have been able to cut the cord and breathe independently. Basically, I feel pretty good again. I feel similar to what I was dealing with before my last hospitalization minus the fluid problems. Julie said I'm healing up very well both on the out side and inside. My appetite has returned and I have regained some of my strength and weight back. However, everybody still comments that I must have lost my butt somewhere at the hospital.
I have enjoyed the company and support of many family and friends in the last five weeks. It's been a blessing to both Anne and I to have so much love and support. I can't thank you all enough.
I have a very close friend who recently lost his wife of 30 years to cancer in Sept. He shared some wisdom with Anne and I that involved his run in with immense grief and sense of loss since his wife's passing. He advised us to avoid putting things off that would lead to regret later by asking each other every day, "Did you get enough of me today?" If the answer was a "no", then something needs to change and don't assume that there will be more time tomorrow.
My brother Tim recently came to visit to get a better understanding first hand of what it's like for Anne, Me and the kids. Although he did get a sense of that during his stay he said he may never really truly understand what I am experiencing. It is my desire as my final days approach that these updates serve as a window into my world and experiences and that it would be helpful, transparent and honest. I know I run the risk of turning some people off with too much information but... so be it.
To be honest and transparent, right now... I am so torn between the mixed feelings of hanging in the balance between this Earth and Heaven. On the one hand I want nothing more than to be free from the pain, suffering, being the cause of other's sorrow and to see Jesus face to face. But on the other hand it really hurts... to consider what I will miss out on in life here with holidays, family weddings, having grandchildren, growing old with Anne, etc., etc. etc.
I KNOW that in a little while I will be with you no more. Consequently, I have such a strong need to express my gratitude before it's too late. I want to say "THANK YOU" and "I LOVE YOU" to everyone who sees this update. Your continuous love and support floors me.
My message to you all is simple. If you have something from the heart to say, SAY IT NOW because tomorrow may not be. When you go to bed tonight: Ask your spouse, your children and your loved ones, "Did you get enough of me today?" If the answer is a "no" do something about it now so there are no regrets later.
Happy Thanksgiving!!!
Love, Tom
11-03-09 This is just a quick update to let you know how Tom is doing at home, He has been busy recovering from a rather harrowing 12 days at the hospital. His lack of energy and compromised lungs required him to travel home via an ambulance, but after a few pretty rough days, I am happy to report that he doing quite well, all things considered. I just got back home in Seattle from a week's visit in San Diego, so here is my report:
The key to recovery was weaning him off all the pain medications that were sent home when he left the hospital. It appears that the pleurodesis procedure that was performed on his lungs has been successful in keeping his lungs from filling with fluid. Hooray! There is now no need to go back to the hospital to surgically insert a permanent drain in his lungs.
Last Thursday, Tom had a two-hour home visit from the hospice’s Dr Graham, which was encouraging and affirming in many ways. He told Tom that he never would have to experience an episode of acute pain like he had in the hospital and that he now had all the medications he would ever need at his disposal. He also advised Tom to live “Day by Day”, not “Week by Week.” A “bad day” does not necessarily mean that he is destined to experience a downward spiral. He told Tom, “You have lots of good days ahead of you.”
Last Friday, Tom took those encouraging words seriously and challenged himself to an afternoon at the beach! It had been three long weeks since he was able to step outside his apartment. The warm sunshine and ocean air were invigorating. That night he high-fived me and announced, “Today was a GOOD Day!”
Tom has lost considerable weight, but his appetite has returned and his spirits seem boosted by the love and support from Anne, his kids, his siblings and many friends who arrive daily in a steady stream.
Dale Reed, from the Lighthouse Community, flew down to San Diego today to meet personally with Tom. Tomorrow he will film a special segment that will be featured on the Lighthouse's website, which is a non-profit agency that offers financial help to people dealing with catastrophic illness. You can check out the website at: (To read Tom's site, Click "Communities that we support", then click "Cancer"; then click on "TomM.")
Tom hopes that in a few days he can write an update to these pages himself. In the meantime, I wanted to assure all his supporters that he bravely continues the battle against angiosarcoma and that both Tom and Anne are grateful for your love and prayers.
Susie- Tom's sister
10-15-09 This is Tom’s sister Karen. Sorry for the delay in getting you an update on Tom’s surgery last Friday and his on-going recovery. Hopefully this email will bring you up to date. Friday’s surgery at UC San Diego - Thornton Hospital went well with no complications, according to the surgeon, Dr. Golts. He said that Tom might be able to go home on Monday if all went well over the weekend. He told us that he drained 1.75 L of fluid from the pleural space around Tom’s left lung, which exceeded his highest drain amount to date by a half a liter. Dr. Golts also made a point of telling us that the drained fluid was a chocolate-y brown color, indicating an “old” bleed. He did not elaborate. Later we asked the anesthesiologist what that meant and he told us that it is a common condition with malignant cancer.
As expected, over the weekend Tom was in a significant amount of pain from the surgery and the 2 chest tubes installed to drain the excess fluid from the pleural space. He said that he only felt comfortable if he was lying completely still. Periodically he used the breathing apparatus to help re-expand his left lung, but those long, deep breaths usually caused very painful prolonged coughing spells. Meanwhile, the fluid continued to drain from his chest tubes – considerably more than the 100/ms per day required before the chest tubes could be removed. Dr. Golts asked him to be patient, saying that sometimes it takes a few days for the sealing to kick in. He also suggested walking as a way to decrease the flow of fluid.
Monday started out OK until his pain level increased at mid-morning. After repeated requests for more pain medication was denied by the nurse on duty, brother John went to find the nurse’s supervisor. In the meantime, Tom started to sweat profusely, went into convulsions and had great difficulty breathing. Some sort of emergency code was called and within seconds, several members of the medical staff rushed to his side. John was asked to leave the room. Thankfully at some point he was given a heavy duty shot which drastically reduced his pain from a “10” to a “0” in less than a minute. He was eventually stabilized after 20 minutes but was thoroughly exhausted. He was so weak he could barely talk the rest of the day. Needless to say, the nurse in question was removed from Tom’s case and her replacement was very attentive.
I stayed with Tom that night in case he got into trouble again. Fortunately he had an uneventful evening. He was able to sleep and felt well enough in the morning to take a few laps around the floor. His breathing and skin coloring improved and he started to feel stronger. Earlier that day, Dr. Golts decided to replace the chest tube pump with a gravity drain in case the suction of the pump was causing the tumors to produce more fluid. At 300+ mls a day, the output of fluid was still not decreasing.
Yesterday Tom continued to improve and graduated from the morphine IV to oral pain medications. Since the fluid production did not decrease with the drain pump off, Dr. Golts decided to turn it back on again to see what would happen now. Someone on the cardio thoracic team mentioned that they may be able to give him medication to stop the fluid production but nothing more has been mentioned. For now, besides tweaking the pump they continue to encourage patience while Tom is doing everything he can to help by drinking lots of fluid, walking around the floor and using the breathing apparatus as much as possible. So far this AM not much has changed. Tom suspects that in the next few days, the surgeons may begin discussing alternate plans like installing a permanent catheter to drain the fluid so that he can go home.
At this point we are still hoping/praying that the sealing begins to stick soon. It’s been a stressful week but hopefully the worst is over and Tom will be home by the weekend.
Thank you again for all your continued prayers and support. We will keep you posted.
Karen
10-09-09 Tom's surgery went well with no complications. He is in recovery here at UC San Diego Thornton Hospital, about 10 minutes from home.
Dr. Goltz said that they drained off 1.75 L of fluid (wow!). It was dark brownish colored, possibly from an older bleed or the angiosarcoma tumors (no details there).
We hope to see him in a couple of hours. He will likely be in a significant amount of pain for a few days. He may be able to go home in 3-5 days. More later when I can charge my battery.
Karen
10-08-09 Just a quick note. My sister Karen, Anne and I went to my pre-op doctor appointment this afternoon and to our surprise we were informed that I’m scheduled tomorrow morning at 7am for my Pleurodesis (lung sealing). They had an opening in the schedule so ready or not here I come. Karen will spend the night with us and we’ll hit it first thing tomorrow morning. I’m working on my game face tonight. More later tomorrow…
Tom
09-24-09 It's been a while since my last update and many have been wondering how things are going. Currently, I'm working on a couple of medical procedures to be scheduled in the next week or so that's why I have been holding off on sending this update. It looks like it could take another week before I can firm up a couple of dates so I'll just update you as of today.
I started hospice care two weeks ago. I chose the smaller of the two hospice providers called Odyssey Health Care. They can work much closer and are more hands on with their 100 patients while the other SD Hospice provider who has over 800 patients. I want to back up and say "thank you" to those who I emailed a few weeks back who provided me with their insightful input and advice on things to consider and ask about when choosing a hospice provider. I'm grateful to report that Odyssey has been pretty good so far. We have met our team of support people (RN, MD, Social Worker and a Chaplin) who have individually come buy at least once a week for now to visit us here at our apartment. It's been an interesting process of meeting getting to know them. They are very responsive with meeting our needs and provide same day service delivering medical supplies, drugs and equipment. Now only if I could get them to bring us a dinner and a dessert every night... we would be set. :)
Last Thursday I went to UCSD hospital downtown to have my left lung drained again. I was a little hesitant going in so soon since it was only two weeks since my last tap and I really didn't feel the same pain and symptoms as before. I didn't want the doctors sending me home because there wasn't enough fluid to drain and walk out feeling like a big wuss. To my surprise they drained another 1,200 cc of fluid. I learned that there are small tumors outside of the lung wall that is the cause of the fluid returning much quicker into the pleural space. I'm one week pass the last tap and I can already sense it coming back.
So... I as I mentioned earlier, I am working on scheduling a couple procedures. One is called pleurodesis. This will seal the lining of the left lung to the lung wall which removes the pleural space and prevent the fluid from collecting again. This is the same procedure I had done on my right lung back in April at the Mayo Clinic in Phoenix. I'll be in the hospital 3-5 days and then recovering at home for another 5 days. Pleurodesis is a one time procedure and the answer to ridding myself of this chronic symptom permanently. I'm also working on getting another CT scan done before the pleurodesis procedure to see if there are any new tumors growing anywhere.
I want to share a part of a conversation Anne and I had with our hospice MD that will give a snap shot of what we're "thinking". Dr. Graham came over for a visit last Monday to get acquainted and hear my complete health history. He was a sponge about it all and listened as we explained that we don't want to be in the dark about things... we want to be informed so we can make the best decisions about our future challenges. I asked Dr. Graham a question I have been asking everyone who I thought might have an answer. My question... How will this cancer likely progress and what will it do to me?
Dr.Graham answered my question with a question. He asked me, what do you think it will be like? What pictures or ideas do you have in your mind about how it will be? I told him that I'm 6 months into a 8 months life expectancy and I "think" I'll have breathing problems until I eventually die either from suffocation or heart complications due to a reoccurrence of a tumor mass. He said... where did you get such an idea? He said, in all my experience with the dying in the last 20 years most people die exactly the way they "think" their going to die. He has witness too many patients who think a certain thing and that's what actually happens... weird huh!? Well, that made me stop and re-think things.
For example, Anne and I strong-armed Dr. Wong at the Mayo Clinic in the beginning for a life expectancy because we had lots of decisions to make and we needed a general sense of how long we had together to work things out. Dr. Wong reluctantly told us I had 6-8 months to life without treatment. Well... I'm 6 months into this now without treatment and I still feel pretty good considering my body is coping with a systemic aggressive cancer. I still eat and sleep normal. I haven't lost any weight and I have no pain and after I have my lung sealed in the next couple weeks and hopefully another good CT report the only symptom I'll have is fatigue.
Dr Graham said my body somehow is resisting this aggressive cancer in a way that is not typical. He said, whatever I'm doing... keep doing it. In retrospect, Anne and I have accomplished all that we planned to do in the first six months and now I don't like waiting for the other shoe to drop. He asked another question I wasn't ready for. What are your plans for the next six months? I was quiet... without an answer because I realized... I really didn't have any other plans... but to die. What was I thinking...
All that being said, I am now looking at our calendar planning out the next six months. The truth is only God knows the number of my remaining days. Dr. Graham's advice to plan ahead, "think" of some goals for myself and continue what I have been doing (trust and surrender) has been a lesson well learned. I am encourage!
More later...
Love, Tom
09-01-09 Yesterday Anne and I met with Dr. Colleen Channick of the Pulmonary Dept. at UCSD. I wasn't surprised when she informed me that they drained 1,200 mls (my record to date) from my left lung. It felt like they removed two big gulps worth of instant relief. My breathing today is much better but still compromised some. The x-ray showed that the antibiotics did a good job of knocking down the pneumonia in my right lung but showed increasing fluid in the bottom right lung and also increasing pockets of fluid present mid lobe.
Basically, as the cancer advances it's messing up my lung function and the fluid is now returning at a faster rate. Dr. Channick explained my options for managing the fluid is with either 1.) a surgery that seals the left lung or 2.) to have a catheter inserted in the left lung so I can drain it myself at home - yukk?!. At this time, I'm leaning toward option 1.
I contacted Dr. Reed, my oncologist, today and asked him to officially refer me to Hospice Care. Hospice Care Providers specializes in "palliative treatment" and "comfort care" which by the way still includes the above options 1 and 2 and even palliative chemo if necessary. It's good to have options and to maintain a quality of life... so for that I'm grateful.
As I continue down this road... I want you all to know I am so very grateful for all your support, prayers, cards, calls, emails, well wishes, visits and financial support. Anne and I have been touched and humbled by it all as we view all these acts of loving kindness as the expression of God's very hands and feet at work among us. What a faith builder...!
Love, Tom
08-18-09 I wanted to give a quick medical update since there have been some new developments. I got back to San Diego a week ago last Monday. I must have picked up a bug the last week of my trip in Sacramento that resulted in a head cold. I ended up in ER last Saturday night with symptoms of a chronic dry cough, difficulty breathing and extreme fatigue. The ER doctors diagnosed me with pneumonia in my right lung. I was given an antibiotic and Tylenol with codeine to suppress my cough and sent home 6 hours later.
Yesterday I met with my oncologist for a follow up. Bottom line, he's not convinced that I have pneumonia. To be honest, I was suspicious of the diagnosis all along. Dr. Read said there is a new problem area located at the middle lobe on my right lung that he thinks could be cancer related. Also, the CT scan I got Saturday shows that my left lung has filled up again with another 500 ml of fluid which was a surprise since I just had it drained in Seattle 3 weeks ago. I'm being referred to a lung specialist for further testing and a second option. He suggested that I take the remainder of the antibiotics first to see if my symptoms improve and to rule out pneumonia. I hope to meet the lung specialist next week.
Dr. Read is suggesting starting a chemo drug called "doxil" asap to counter new cancer symptoms (chronic cough, shortness of breath and fatigue). There's a "chance" doxil "might" slow the cancer down with minimal side effects (hot hands and feet). There are no easy decisions with cancer... because nothing is for sure. I plan to wait until after I hear what the lung doctors have to say before I consider doing anything.
That's it for now. I'll keep you posted.
Love, Tom
PS My trip to the NW turned out great and in hind sight I guess my timing was even better.
07-20-09 I made a solo trip up to Seattle Wednesday the 15th and have been staying at my sister Susie and John's place in Seattle. Everything is very well as I am basically symptom free and enjoying the beautiful NW and 80 degree weather. I'm making my rounds to see as many family and friends as possible without over doing it. So far I have "hit the wall" only a couple of times... I run out of gas way too early. I can see now this will be challenging to do everything I hope to do while I here. Anyway, I'm working my way to Tacoma today and will end up at my brother Tim and Tracy's for more visiting until tomorrow night and then back to Susie's in Seattle.
I was treated by Jim and Jerry to fly up to Roche Harbor in the San Juan Islands for two days of fishing. It was an awesome time! Here's a link to Jerry's pictures of our trip. Cut and paste address below in web browser if necessary. hhtp://picasaweb.google.com/jerrymedved/SanJuanIslandCanadaTripWithTomJimJerryBill?authkey=Gv1sRgCJuNkujIk93jtQE&feat=email#
More later...
Love, Tom
PS It's been good to be back to what still feels like home.
07-2-09 I had an oncologist appointment today to review the CT scan from last week. Anne and Karen went with me to meet Dr. Read and to check out the UCSD hospital. The CT report was very good. No tumor to be found!! Dr. Read was surprised because he was expecting some problems by now since angiosarcoma is such an aggressive cancer. I do show an increase of fluid in my right lung, approx. 500 cc total, which is half the amount I had drained last time. He gave me the green light to go to Seattle in a couple of weeks and scheduled another CT scan scheduled in 6-8 weeks.
Karen, Rob and the girls are in town on vacation for the week. We're going to celebrate and have a Mexican dinner together. I just wanted to get this medical update out so that you have the latest.
Happy 4th to everyone.
Love, Tom
06-10-09 Do you remember a TV series back in the 60s called "Combat" starring Vic Marrow as Stg. Saunders?
For those who don't remember or are too young to know Combat depicted the lives of one platoon of soldiers fighting their way across Europe in World War ll. The long running show was very realistic, even to the point of using actual war footage in some episodes. And unlike many other WWll shows, this cast was sent to "boot camp" before filming began. Neither the war nor the cast was ever portrayed in a glamorous way.
All that being said... Combat came to mind after my oncologist appointment with Dr. Read today. For some reason, I was reminded of how my brothers Pat, Tim and I used to love that show. We faithfully watch every episode. We use to make cardboard machine guns just like Stg. Saunders and play war outside in the woods. I remember one day as our imaginations were on full tilt sitting in a freshly dug fox hole hiding from the enemy. We would ask each other, "If you had to die today and if you could pick would you rather get shot by a machine gun or get blown up by a grenade?" Life was so simple back then.
Today... Dr. Read presented another chemotherapy option for angiosarcoma - specifically a drug called Doxil http://www.doxil.com/. He said it "might" buy me some time as a sustainable chemo treatment with "potentially" tolerable side effects. So here I am in my fox hole instead of sleeping torn with a decision... chemo or no chemo. I guess I'll go back to slept on it ... do more research tomorrow and then find a quiet place to be still and listen for Him.
Love, Tom
5-21-09 Anne and I met with my surgeon Dr. Jaroszewski this morning for a post operation discussion. She reviewed my last CT scan and informed me the amount of fluid in my left lung and around my heart is still mild and does not require surgery. I can't tell you how thrilled I was to hear her say, "go home". In hind sight, I really must have been weighed down anticipating another surgical procedure because the relief was so strong I felt like skipping out of her office today!We even got relief from triple digit temperatures with a much welcome cold front and soaking rain storm this afternoon. It's been a good day today!
Love, Tom
PS You know you've truly surrendered and that God is involved... when things just seem to flow and somehow work out.
05-10-09 I have a quick update. I started having symptoms last Wednesday similar to what I had before with pleural effusion (shortness of breath, heaviness in my chest, coughing and overall weakness). I called Dr Wong to see if he could schedule a CT scan to check things out before I met with him on our scheduled follow up meeting last Friday. It's a good thing he was able to squeeze me in last minute because the CT scan results showed my left lung is now filling up with fluid. It looks to me like it's about one third full. He also informed me of a new problem that involves the collection of fluid around my heart in the space between the heart muscle and the thick layer of pericardium surrounding the heart. Dr. Wong explained the cancer is causing this and that it will continue so we need to find a way to manage it. I'll need to do something right away as this will become a more serious problem as the fluid builds up especially around my heart. He has schedule a 1:30 appointment on Monday for me to meet with my surgeon Dr. Jaroszewski to discuss what surgical procedures are available to drain the fluid and to manage the chronic drainage problem.
I spoke with Kathleen Russell, our valued private family medical advisor and denial buster on Friday. Kathleen told me about a probably procedure that would involve cutting a hole in the pericardium (the sack around my heart) creating a window to allow the fluid to drain from the heart into the left lung. I would then have the fluid drained regularly by tapping the lung as needed every one to two months. She said this would actually be a good low risk, non invasive way to manage this symptom. I'll update again after Monday's appointment.
Happy Mother's day to all the moms!! I hope your day today is full of love - your return dividend so to speak from your precious investments - your children.
Love, Tom
04-21-09 Many of you have been asking how I'm doing since the surgeries so I wanted to send out another update to get you current. I'm healing up and feeling better every day. I'm still moving a little slow and run out of gas too soon but overall I don't have any complaints.
I had two follow up doctor visits yesterday - one with the surgeon and the other my oncologist. I had an x-ray of my lungs done first thing in the morning and then met with Dr. Jaroszewski later in the afternoon. She showed me the x-ray and explained that the surgery worked out as planned. My right lung is now sealed and should prevent any more fluid from leaking in again. I'm so grateful for that! It was a quick meeting and after she removed the stitches I was on my way to meet up with Dr. Wong.
I wanted to have a follow up with Dr. Wong to confirm he understood why I elected not to do chemotherapy. After I explained my reasons he told me he respected my decision. I could tell, as a medical oncologist, he struggles with not taking on the fight but he did assure me that based on my specific reasons he completely understands. He wants to refer me to an oncologist in southern CA for future care once Anne and I have a good idea where we will relocate. This way the new medical staff will be familiar with my case before I show up with the inevitable complications down stream.
Finally, I want to thank you for all the well wishes, cards and most importantly your thoughts and prayers. It's comforting to know there is a huge network of support poised and ready to act at any moment. I look forward to the days ahead and all opportunities to seeing many of you. Until then, I'll be looking at one day at a time... cherishing every moment along the way.
Love, Tom
04-15-09 It's so good to finally be home and out of the hospital. Nothing against the Mayo Clinic they were awesome. I was released Monday and have been healing up from the two surgeries last week. I feel pretty good. Aside from the obviously surgery wounds I should be completely back on my feet and healed up by this time next week,. Since my sister Judy and others updated you on my week long stay in the hospital, I'll fast forward and give you an update on my oncologist appointment with Dr. Wong yesterday.
Dr. Wong discussed with Anne and I the treatment options of chemotherapy, and a possible case trial study. Anne and I pressed Dr, Wong until he gave us my life expectancy (6-8 months w/o treatment). Denial is a powerful thing! To be honest it shocked me some to hear it said so matter of fact. To make a long story short, I have made my decision and will not seek further treatment.
I want to make sure I spend my remaining time with Anne (#1 priority), my family (#2 priority) and friends (#3 priority). It didn't make much sense staring chemo next week and throwing away my optimum healthy days to chemotherapy and bondage to hospitals, doctor offices and chemo wards. I was informed I would have to live the rest of my life with chemo. NO THANKS!
I would rather use this precious time left to help Anne transition to her future home somewhere in Southern California. I am truly excited to be able to share this experience with her. I want to invest my energy and efforts into getting her set up and as my top priority
I want to give her the liberty to make all move decisions based on her needs not mine. I have been in touch with my kids Kristen, Rob and Shannon who are all 100% supportive of my decision. We talked for hours and discussed getting together in the near future. They are actually excited to have opportunities to spend quality time together and not with a chemo ravaged dad.
In the next couple of months I am planning to go to the NW to visit family, friends and Labels West colleagues. I hope there isn't any snow predicted there? :) Anyway, I'm running out of gas and will have to catch up on anything I might have missed later.
Love, Tom
PS. "The strength in a man's power is in his surrender"
04-10-09 Today was another day of sharp turns and surprises. But by the end of the day, we finally have certainty about Tom's diagnosis and the course of treatment.
When Tom's oncologist, Dr. Wong, arrived around 10 a.m. the nursing staff had him ready for transport to surgery for the expected procedure to "clean up" cancer cells remaining from Tuesday's surgery that removed the tumor mass in Tom's chest cavity. We had been waiting not-so-patiently for the pathology results from the biopsies taken on Tuesday by the thoracic surgeon, Dr. Jarolszewski. She had removed tissue from the heart, lung, chest cavity and lung fluid to test exactly what kind of cancer Tom was dealing with. The strong expectation was that the pathology would indicate a recurrence of Tom's 1997 mediastinal germ cell cancer. Since there are many kinds of germ cell cancer, his doctors needed a clear determination of its exact type. Since recurrent germ cell cancer is difficult to treat and possibly resistant to chemotherapy, surgery was thought to be the best initial course of action, most likely followed by chemotherapy.
This morning Dr. Wong informed us that the pathology indicated something quite different and it suggested a change in plans. The tumor and biopsies show that Tom actually has a different type of cancer, angiosarcoma. These cancer cells are present in the tumor that was removed, in the muscle of the lung and in the pleural fluid (in his lung). The presence of this cancer in several places means that Tom's cancer is metastatic (4th stage) and therefore incurable. This information led Dr. Wong to recommend that the scheduled surgery should not proceed as planned. Removal (resection) of visible cancer cells could not guarantee that all cancer could be removed because it now exists in several places at the cellular level. Based on this information, and with Tom's consent, Dr. Jarolszewski proceeded only with the earlier plan to a "pleurodesis" to seal the space between the lung wall and the lining in order to prevent fluid from building up there. Tom's time in surgery was drastically reduced to about 20 minutes with prep and recovery making it about 3 hours in all. He handled it well and was back in his room by mid-afternoon.
Dr. Wong's recommendation now is to turn to chemotherapy as the first line of treatment. Tonight Dr. Wong discussed the entire situation with us. He recommends that Tom focus his attention on healing from today's procedure and getting home in 2 - 3 days. He recommends 4 - 5 "rounds" of chemo. Each round involves one day of chemotherapy per week for three weeks. The total time with this plan is 12 - 18 weeks. After this explanation, Tom is inclined tonight to proceed with the recommended course of treatment, understanding that he may suspend it if there are signs that it is not working or that the side effects are not tolerable.
He will be in the hospital for 2 - 3 more days recovering from today's procedure and making sure that that there is no further build up of fluid in his lungs. After that, he will be at home continuing to recover, meeting with Dr. Wong in about a week and beginning chemotherapy treatment in approximately two weeks. Tom wanted all of you on this list to have this clinical update. But because everyone on this list cares deeply about Tom and Anne, a bit more is in order. They want you to know that they are relying on their personal resilience and deep faith to process this news. They are making plans for what they will need during Tom's treatment. They will let us know in the coming days and weeks how we can support them.
If the airlines cooperate, I will be returning to my home in Boston tomorrow afternoon or evening. I encourage each of us to focus our attention on healing thoughts for Tom and Anne that they have the guidance, and openness to our help that will support healing for both of them in the coming weeks and months. It is a journey that we do not choose but that we willingly and lovingly embrace. Tom would have it no other way.
Love, Judy
04-09-09 Tonight Dr. Wong, the oncologist came in to report that he has had discussions with Dr. Jaroszewski, the surgeon, about the advisability of proceeding with a second surgery tomorrow (Friday). While not all of the pathology reporting is in, the preliminary information leads him to think that laproscopic surgery to remove remaining cancer cells is a reasonable risk for Tom. Final pathology reports are expected tomorrow morning and if they show the type of cells that they expect, surgery is the first treatment option. The sooner it is done, the easier the procedure will be.
So a final decision to proceed will be made after all the pathology reports are in early in the morning. If surgery takes place, it will be late morning or early afternoon. It is expected to go through most of the day because she will be proceeding carefully and wants to be thorough in getting to and removing remaining cancer hot spots. She plans to take a cautious and safe approach, maintaining minimal risk throughout. While all surgery involves some risk, this procedure, without complications, is considered relatively routine. Tom's recovery will be similar to what he has just been through successfully; 2 - 3 days in the hospital. Further discussions of chemotherapy treatment are pending and would not begin for several weeks at the earliest.
We will keep you posted as things progress. Your prayers and support are always appreciated and tomorrow is no exception.
Judy
04-08-09 Tom is waiting for the oncologist to come by. (It's his day off, so there is no predicting when he will arrive.)
Here's what Tom told me in the meantime:
While they drained another 32 oz from his lungs and removed the golf- ball sized tumor near his heart yesterday, the surgeon told Tom that she would have liked to have done more, but it was getting too late in the day (6PM) and that they were not in an operating room that was equipped with all the necessary supplies & equipment to do that big of a procedure. There is some fatty tissue around the heart that has cancerous cells that needs to be removed. She would also like to remove part of his lung and part of the lining around the heart that works like a sling.
The pathology from yesterday's procedures will determine what kind of cancer Tom has and whether or not it will respond to chemotherapy.
This path report should come back as soon as today, but maybe tomorrow. If chemotherapy is not going to be effective, then surgery is Tom's only alternative to get rid of the remaining areas of cancer in his chest and on his kidney.
Tom's oncologist wants him to go to a specialist at Sloan-Kettering in NY. Tom has not been able to hear the explanation as to why this would be better than having any subsequent surgery done at the Mayo Clinic in Scottsdale.
If Tom decides to stay in AZ, then they might do this second surgery as soon as this Friday! It would be an all-day procedure and it might involve more risk in the event that the laparoscopic technique might not allow her to reach all the areas. She might have to "open him up" via Tom's chest wall like they did in his big surgery 11 years ago.
There is also a possible complication due to the fact that part of the lining of the heart is attached to the front of Tom's chest wall.
These are just a few of the considerations that Tom is mulling over this afternoon while he is waiting for the oncologist. I'll let you know as soon as I hear more.
Susie
04-07-09 Tom is out of surgery. The surgeon reported "good news and bad news."
Good news: She was successful in getting into his chest cavity - something she was not sure she could do. She not only reached the mass that showed up on the PET scan, but she removed it. It was about the size of golf ball.
The bad news: The pathology confirmed that it is germ cell cancer. She also biopsied three other places to see if microscopic cancer cells remain.
The pathology work will take a couple of days. If cancer cells remain, they will have to be treated. The options are chemo (if the type of cells identified are responsive to chemo) or by another surgery. Dr. Wong, the oncologist, was informed of the results and he will see Tom tomorrow.
The surgeon did not perform the "talc procedure" to seal the lining of his lungs because it would prevent her from going back in to do further surgery, which might become necessary. If Tom needs further surgery to remove any remaining cells, it can be done laproscopically. It would not be as invasive as his surgery 11 years ago, but it would be, in her words, "a full day's work."
Tom will be in the recovery room for about two hours and then moved to a regular floor tonight. He will be "out of it" from pain meds for awhile.
He will be in the hospital two nights.
Anne and I are encouraged by the news that she got the mass out. We will know more about next steps in a couple of days when the pathology reports on the biopsy tissue are in.
Thanks for your support and your prayers,
Judy and Anne
04-06-09 I had a pre-operation meeting with the thoracic surgeon Dr. Pam Jaroszewski yesterday with Anne and my sister Judy. We got an update on last week's diagnostic test results and more details about my upcoming lung surgery scheduled for 10 am today. The good news is the PET scan and MRI ruled out any additional problems besides the three problems we already knew about (the pleural effusion, a small tumor mass near my heart and another small tumor mass on my kidney). The mass on my kidney was the only thing that lit up on the PET scan suggesting some kind of kidney cancer which has been described as a lower priority/concern to the other tumor mass near my heart. This mass did not light up on the PET scan suggesting a certain type of a teratoma tumor but without a biopsy remains a mystery.
During today's procedure Dr, Jaroszewski will remove the fluid from my right lung and attempt to seal it permanently to prevent future drainage problems. The doctors are suggesting my lung is filling up due to the high doses of radiation I had 11 years ago so getting this fixed today will eliminate a potentially chronic lung problem from reoccurring. The second challenge of the day will be to get a biopsy from the mass near my heart. Hopefully they can safely find a way to get a tissue sample that will finally lead to a diagnosis and treatment. I will be admitted in the hospital for a two night stay and should be released on Thursday.
I'm sure Judy and Anne will be updating you on how everything goes in the next couple of days. That's it for now...
Love, Tom
04-01-09 I met with Dr. Dawn Jaroszewski, Cardiovascular & Thoracic Surgeon, at the Mayo Clinc this morning. She will perform the Thoracentesi (the procedure that drains the fluid), camera scope for nodules to get a biopsy and seal my right lung to the lining around the lung to prevent the lung from filling back up again. Dr. Jaroszewski consulted with my oncologist Dr. Wong and both are recommending that we delay the above procedure (a two day stay in the hospital) until next Tuesday 4-7. Their reason for doing so is to have a PET scan done tentatively this Friday 4-3 instead.
A PET scan will pinpoint the location of the cancerous tumor, reveal the safest place to get a biopsy and assist in determining the best method for treatment. Dr. Jaroszewski said the 2 cm (.78") nodule found on the front right side of my heart (my official diagnosis to date - "Mediastinal Tumor Mass") is inoperable and not even an option for a needle biopsy as it could prove to be a deadly procedure.
That being the case, believe it or not, I'm hoping for an additional tumor to show up somewhere other than the right chest area in the PET scan. It could end up being a safer place to get a biopsy from. It's also possible that the fluid from the lung could now have cancer cells present that would serve as a biopsy.
Again, the biopsy is necessary to identify what type of cancer it is and determine how to treat it. I'm waiting for the Mayo Clinic to call today to reschedule the PET scan, the Thoracentesi and the MRI of the kidney.
More later...
Love, Tom
P.S. Thank you again for all your prayers and support.
03-26-09 Anne and I met with Dr. Wong at 10am this morning. We discussed my CT scan results for entire hour. Consequently, there's a lot of information I'm about to share so bare with me as I go through it with you. For those of you who need to cut to the chase and get to the bottom line... here it is. It's not good news and treatment will be very difficult.What we don't know:
- What kind of cancer I have.
- Exactly where the tumor is located.
- What my treatment options are.
What we do know:
- My symptoms of shortness of breath, a chronic dry cough, pain in the left chest, fatigue and fluid in the lungs is most likely related to some form of cancer.
- Due to my previous medical history and current symptoms there is a high statistically probability that I have a late relapse of mediastinal (front chest area) nonseminoma (mixed germ cell) cancer.
- This type of cancer is more aggressive and difficult to treat as it doesn't respond well to chemo.
- Surgery is an option providing the location of the tumor is operable. In my specific mediastinal location surgery is not likely.
- Radiation is not typically a treatment option for germ cell cancer.
- The CT scan revealed small nodules on the front right side of the lining of my heart.
- Also found was a 1.? cm size nodule on my right kidney which is most likely a different type of cancer altogether unrelated to the mediastinal (chest) cancer.
- The real "smoking gun" Dr Wong said is the sack/lining that surrounds my right lung where the fluid is filling up again. There is likely more nodules there but aren't visible in the CT scan due to the fluid.
- My left chest is also suspect for a tumor due to the pain I'm still experiencing. The tumor probably doesn't show up on the scan because it's too small.
- My tumor markers AFP and HTG are normal.
What's next:
- Tomorrow I take two old CT scans to Dr. Wong that I had filed away dated back on Nov. 4th and Dec. 21 of 1997 for more evaluative information to consider when choosing where to do a biopsy.
- A biopsy is necessary to determine the type of cancer. There are two possible sites for a biopsy. - The preferred biopsy location is the nodules on the lining of my heart. Dr. Pat DeValeria, Cardiothoracic Surgeon, will review my CT scans to determine if doing a biopsy in the mediastinal area is even possible. It may prove to be too risky due to my unusual vascular make up and scare tissue in my chest resulting from my first bout with cancer 11 years ago.
- The other biopsy option would be from the lining on the right lung. When they drain the fluid they will use a camera to scope to locate the "possible" nodules and do a biopsy at the same time.
- The procedure to drain the fluid from the right lung, scope and possible biopsy is schedule for April 1st - no fooling.
There is more information about possible types of germ cell cancers there are to be considered but I'll spare you the details. I think this give a pretty good summary for now. We'll know more in the days to follow as more definitive test result are available. Final note:
- No matter what... "It is what it is".
- There is nothing more I need to do tonight.
- I have God's peace in my heart and I look forward to what He has in store for me tomorrow.
Love, Tom
03-20-09 I had my first oncologist appointment with a Dr. Bryan Wong yesterday at the Mayo Clinic Oncology in Scottsdale. I was impressed with Dr. Wong and feel very good about moving forward under his care. He's a younger doctor who came in the room sat down and without any notes recited by memory my entire medical history since 1997. I didn't have to add anything. He did his homework and knew everything about me from reviewing the medical records that I drop of his office the day before. Pretty good huh?! We are still waiting for the all important Group Health medical records to show up. Unfortunately, this could take weeks to locate the filed away paper work. He interested to know how I presented 11 years ago, what my blood work was back, to see the radiologist reports and then compared everything to how I'm presenting today. He's looking for original "official diagnosis" for insurance purposes to determine if I qualify for coverage for a PET scan.
Dr. Wong did compare the CT scan from 2007 and the most recent one a couple of weeks ago and could not see anything unusual or different except for my preexisting battle scares resulting from my first bout with cancer. He wanted a radiologist to review them and confirm his findings. The fluid in my lung obscured a good part of the right lung so he scheduled another CT scan of my chest and abdomen for next Monday at 8am. If they don't find anything then I'll most likely have a head to toe PET scan if allowed by the insurance company. He's looking for a tumor mass to do a biopsy to conclude his diagnosis.
He did explain a few other reasons that lungs would fill up with fluid but none of them seem to fit my situation. So for now, cancer seems to be the strongest possibility. The pain on the left side of my chest is still unexplained and is getting worse each day so he wants to get moving on trying to figure out what's going on. My energy level is very low at times and then switches to being ramped up not being able to sleep but at least my cough has calmed down for now. Bottom line... I just have to be patient and accept that there no quick answers.
On a positive note, the Mayo Clinic has been extremely professional and responsive. I'm most impressed with their communications keeping everything thing straight among their multiple locations. They are very efficient and organized. I feel fortunate and completely satisfied with their care so far.
I'm taking to heart the advice of "One step at a time..."
Love, Tom
03-17-09 I had my first appointment this morning at the Mayo Clinic with Dr. Devaleria. He reviewed my available medical records and has referred me to an oncologist inside the Mayo Clinic. Unfortunately, I need to wait to hear back from the oncologist to make an appointment which could take a couple of days. Oh boy, more waiting....
In the meantime, I am working on getting my 2007 CT scan from the Arizona Heart Institute burn to a disk and have it delivered to the Mayo Clinic so their radiologist can compare the two to see if there is any new growth on my old tumor site.
I feel much better now that I can breathe but I still have a chronic dry cough and pain in my left chest. Hopefully I'll get that call sooner rather than later so I can move forward. That's it for now...
Love, Tom
03-11-09 Here's the latest. I picked up a copy of my lab results from John C Lincoln Hospital yesterday afternoon. The final results from my blood work and pleural fluid came back normal. There was no indication of malignant cells or evidence of a germ cell tumor. Unfortunately, that doesn't mean I don't have cancer it just means the atypical cells found in the fluid from my right lung doesn't have a point of a malignant origin. We just don't know enough yet to rule cancer in or out.
I could go on and on about the possibilities but I won't. The bottom line is I need to be seen by an oncologist for more diagnostic testing. I have an appointment next Tuesday at the Mayo Clinic in Phoenix. I feel OK today as long as I don't talk too much and kick up the coughing. So until then I plan to lay way low and be still.
Once again, thank you for all your thoughts and prayers.
Love, Tom
03-10-09 Tom asked me to send out an email to let you know that he is pretty winded this evening and just won't be able to return all the calls tonight. He is coughing quite a bit and is exhausted from not sleeping well the last few nights.
Earlier today at the Arizona Heart Institute, a heart specialist (but not an oncologist) told Tom that due to his history and current symptoms (fluid on lungs, tenderness of his chest & sleeplessness) - he likely has cancer somewhere. Tom said she was the first person he has encountered so far who actually showed a sense of urgency re: his condition. They scheduled an appointment for him next Tuesday at the Mayo Clinic.
Later in the day, though, when he picked up his labs from John C. Lincoln, someone there (maybe a tech or a nurse) looked over his reports and told him that all the pathology appeared to be negative. He has not had a chance to read the reports himself yet but is trying to email them to Kathleen to get her input (there seems to be an email server delay at the moment). Kathleen did speak to some heart MD colleagues this evening who suggested Tom may have a blood clot in his lung.
In the meantime, he is coughing quite a bit and has a hard time having a conversation. Right now he is resting, trying to rest to see if his breathing improves. If not, he may decide to go the Mayo Clinic ER this evening. He already is a registered patient there and could get in their system now as opposed to waiting until next Tuesday.
I'll let you know if I hear anything more this evening.
Karen
03-06-09 I just spoke to Tom on the phone. He sounds pretty good, but he says that he is not out of the woods yet. They just did an echogram to rule out the possibility of the fluid that they drained yesterday was coming from the heart. Tom says that he has a leaky gate valve and it is possible that fluid could have escaped. The 32 oz of fluid is being tested and they will have the labs back tomorrow. The fluid came from the sac outside of the lungs, not inside. That much extra fluid could have made his lung collapse.
The CT scan from yesterday was not conclusive about the pain that Tom is having on his left side, but the good news is that it doesn't show any kind of blood clot. The main question that they are focusing on is whether this is a simple case of pneumonia or is this a reoccurrence of cancer. So far they have not been testing his blood for any tumor markers. If it turns out that cancer has returned, then Tom plans to switch hospitals and start working with Arizona Heart Institute where he was seen 2 years ago. Dr Tatum is his current in-hospital doctor and she promises to be in his room at 10 AM tomorrow with some answers from all the labs and the echogram. Tom was frustrated with seemingly no action or attention, so he had to threaten to leave the hospital and go elsewhere. Dr Tatum told him that even though he looks and feels pretty good, that he is actually very sick and needs to stay right where he is. He is hoping to be released tomorrow.
W--- k--- m--- t------,
Susie
03-05-09 Unbelievable. Anne just left me a message to say that Tom went into the hospital last night with pneumonia. He has had a horrible cold and pain in his left side that was bothering him even when he was up here a few weeks ago. His cough was so bad while he was staying with Bernie that she mailed him the "healing quilt", which he received yesterday. Today they are going to do a procedure that drains his lungs of fluid, so that he can breathe better and get some relief. According to Anne, Tom's lungs aren't in good shape ever since the chemo that he had with 11 years ago. They are also doing a CAT scan to compare to a previous one that was done in Arizona a few years ago. They are looking for the cause of the pain in his left side.
That's all I know. Think positive thoughts and say some prayers!
Susie