What a great year! 2011 has been awesome. I made 5 trips to the Mayo this year. Mostly for CT & PET scans which have all been planned and showed no signs of cancer. I also had several stents placed in the bile ducts of my liver through ERCP procedures in May, August, and November. After my last ERCP in November, they removed all the stents. Stent-Free Baby!! My bilirubin is still a little high as I’m still a bit jaundiced. My bilirubin has been fluctuating quite a bit which is why they have been placing the stents to keep the bile ducts open. Although, as I said before, I feel great. No pain and fatigue is minimal. I have been extremely active this fall and snow-less winter so far….boo. Although, hopefully we get some good 40 below to make up for it and can ice fish into May! Carolyn keeps me busy too and she is a riot…most days. Thanks for checking in and have an epic New Years and 2012. Sorry for not having any real news, I think that’s a good thing though.
The Leukemia and Lymphoma Society’s 2011 walk was a success again! We had a great turnout for “Thumper’s Gang” for the 2nd year in a row, as well as a great turnout at Target Field. We missed the lighting of the balloons last year so it was really cool seeing the lighting ceremony with all the gold, white, and red balloons. Cindy did an awesome job organizing again and raised over $2,000. Thank you Cindy! I don’t think anyone can go through the things I’ve gone through without support from family and friends. This is just another example of how humbled I am to have to all of you by my side. Special thanks to everyone who donated and to my fellow walkers!
We’re walking again!! September 25th at Target Field. Join Kim, Carolyn, and myself as we walk to raise money for The Leukemia & Lymphoma Society. Thanks to research dollars raised from programs just like this, I have gotten treatment and am in remission today from B-cell Lymphoma.
Since I was at the Mayo in early May I have been feeling great. No pain or lack of energy. My jaundice has improved as my bilirubin went from 19 to 9.8. Summer has been treating me well. Kim and I have been to the beach/pool with Carolyn many times and she loves it about as much as I love being out and active.
My recent checkup at the Mayo went good. Again, there were no signs of cancer. They want me back in 3 months and want to do a PET scan. This is pretty routine, and would be the 2nd scan in 6 months. From the liver side, things went good there also. I had an ERCP to removed the stents that were placed in my liver back in May. After removing those two they decided I would benefit from putting some back in. So, they placed 3 more stents to help bile flow better into my intestines. They also found some small ulcers in this area and although they are not worried about them want to start me on some medication to reduce acid. These could start to cause pain but at this point, it’s nothing to worry about. 3 more months and I’ll have to go back again and get the new stents removed.
My liver doctor called me on Friday night around 6:30 pm to give me the low-down from the procedure earlier in the day. He is on vacation at his lake cabin but wanted to make sure I was doing ok. I told him he shouldn’t be doing that and he said “I will enjoy my vacation better knowing that things are taken care of and you’re doing good.” I feel so blessed to have had this guy looking after me for last 17 years, it’s ridiculous.
It has been 6 years since my liver transplant. Very few days go by that there isn’t something that reminds me how lucky I am to be alive. Ten years ago I would never have guessed that I would be as blessed as I am today, not only to be alive but for all the good things that have happened in my life in the last 6 years. Pete, I’m sure you are tired of being “thanked” but….well, thank you. It’s just not normal for someone to willingly go through what you did for me and I’ll never forget it.
I had a return trip to the Mayo Clinic last week. My bilirubin has risen to 19. It has almost doubled in the last month, causing me to be a lot more jaundiced and also causing some abdominal pain. After meeting with both my liver doctor and lymphoma doctor they decided to have me do a PET scan(to check for cancer) as well as an ERCP(to check the liver).
For the ERCP they sedate me completely, with the anesthesia team, put in a breathing tube and pass a scope down my throat. They were able to see that a couple of my bile ducts were nearly closed off, not allowing bile to pass through into my intestine, so they opened them up with a balloon, removed some sludge and stones that had formed from the pooling bile. After that they placed two plastic stents to keep the bile ducts open. Even though I have to go back in 3 months to have the stents removed this was fairly good news as in there was something to fix. These stents will keep the ducts open and get the bile flowing again, which will also make my abdominal pain go away and drop my bilirubin. These were the first pictures of my liver in 4 years and my doctor said he was expecting it to look worse than it did. So that was good to hear also.
Right now I’m still pretty sore, all over really, but mainly my throat and jaw. My ribs and abdomen are also pretty sore because of all the air they pump into me during the procedure. But this should all go away in a few days and hopefully get me back on track for a while.
Also, the PET scan showed no Lymphoma, which is obviously good. But every day that passes that I’m in remission from cancer is that much better for me with another liver transplant looming. My chances of getting a liver and surviving a transplant are just that much better.
The one negative is I lost about 8 pounds in the last two weeks, just not eating properly since I wasn’t feeling good. So I’ll have to work hard now to get that weight back.
For the most part it was a visit to get all of us back in touch and on the same page again. The last two years I’ve been followed by the “cancer” people and haven’t had much contact with my liver docs. My transplant coordinator retired a few months ago so I will be getting a new coordinator in the next few weeks. Sharon, I will miss you, to say the least.
Dr. Poterucha is my liver doc, and has been with me since 1994. He was the one that told me back then that I would need a liver transplant and has taken care of me ever since. Again, last week he delivered the news to me. At some point, I’m going to need another transplant…..not that this is new or shocking, just a bit more of reality. I don’t believe that the Mayo has ever done a 2nd liver transplant on a patient who has had Post Transplant Lymphoma, because a recurrence of lymphoma is much higher due to the higher doses of anti-rejection medication that I would need to take immediately following the transplant. This is now an ethical issue. Meaning that they don’t want to give a good liver to someone who is a high risk to have cancer return and not survive anyway.
However, Dr. Poterucha indicated (in this specific situation as it relates to me as a patient) that he and my surgeon would be aggressive. They would fight for me to do all they can to get me another liver because I have been a “model patient”. Basically, they would present my case to the organ transplant committee and fight for me to get a new liver when that time comes.
My obsession with video creation lives on! So here is a link to a quick clip that I put together that highlights the last 6 years of my life.
If the above link doesn’t work you can visit http://www.youtube.com/lombardvideopro
I returned to the Mayo Clinic again for my 3 month check-up last week. First up was a CT Scan, then a quick blood test. My afternoon was capped by a visit to Hematology with Dr. Habermann. He viewed my CT Scan in front of me on the computer, scrolling down my body from head to toe with his index finger wheeling the button on top of the mouse. As I saw the black and white images on the screen lack the colors of bright red and orange, I knew the result already. But it’s nice to have the customary hand shake that he always gives me, “we win”, with a smile.
I think the expectations that these doctors are faced with can be heavy. I’m very aware of my reality. Very thankful for all the medicine and treatment that I have received. Dr. Habermann goes out of his way to be a positive influence for my life not just my health care. He asked how Kim and Carolyn were doing. When I said “great” and that Carolyn had just turned 1 year old. He shook his head and said wow I can’t believe it. I have a good feeling that when I was in the coma and Kim was pregnant, he never thought that I would live to see her birth, let alone her first birthday.
It has been 1 year since I received Chemo and am thrilled to be feeling so good and cancer free. I am set to return to the Mayo to see my liver doctor in a few weeks. My bilirubin is high, 11.5, but I’m not too concerned about it as I’ve been down this road before. I’ll post again as soon as I have some information from my liver team.
I’m happy to report that 2010 ended on a very positive note. I started the year with with a return of my Lymphoma and getting doses of chemo. Spring and Summer brought me better health as I continued to get stronger and back on my feet. I’m feeling good now and have had only one check-up since August. I’ve been able to get out in the woods hunting this fall and have done lots of ice fishing already this winter. My focus is definitely on Carolyn these days and she takes up most of my free time. Kim and I have been loving it and really enjoy our time together as a family now that it doesn’t revolve around the Mayo Clinic or any other hospitals!
I’m only 2 months away from my 1 year milestone of being cancer free. Sorry, for the lack of information lately. It is simply a big dose of life, which is a good thing.
Another successful check-up! I got the all clear again. My blood tests looked really good and show no signs of cancer. My doctor is still very concerned and maybe for my benefit, just to make sure I understand that the risk is still there. He is still worried that the Lymphoma could return since I never fully completed either of the two different cycles of Chemo that I started. He wants me back in another 3 months to get scanned again. This next appointment will mark one year since my last chemo treatment so that will be a big achievement and milestone.
My liver is also doing good. Although my blood test are all stable. My liver numbers are high, meaning my liver isn’t working as good as it should. Since they know exactly what is going with it there is no plan to check it or go through any tests. My Bilirubin is at 5.6 and should be 1.0 or less. The higher it goes the more jaundice and the less energetic I’ll get. But I’m a long way from that, so I’ll stick to worrying about things I can control……..which is nothing, I guess. So, sweet nothing to worry about!!!
