Next biopsy to get samples from the lymph nodes set for Wednesday… thanks to Maria for promising to get us there!
After this, it will take two weeks for the results (the waiting game continues) but this should give us the info we need to get the treatment options figured out.
Acupuncture is working for about 36 hours at a stretch to relieve the pain and bloating and enable Rich to go to only half the meds when the treatment wears off. Overall, a huge improvement. Gonna continue for three times a week. Ensure three times a day, iron supplements getting some good color back despite weight loss. Finding a good balance!
Looking forward to seeing Richard and Noelle this coming weekend and pictures of Bean and Boo make us smile every day. We’ll see them at Easter. All good things to look forward to.
Waiting to find out when the next biopsy will be scheduled
Waiting two more weeks after that for the results
Waiting to see what other tests we need to get
Waiting in waiting rooms
Waiting at home
Waiting on the phone
So instead we’re looking forward to all the wonderful events to celebrate with our family and friends.
Or “Seek and ye shall find” Within minutes, our scouting family inundated us with names of acupuncturists and we’re so happy to say that the results were everything we could have wished for. Went to the local guy in town and within 30 minutes, Rich’s pain and bloating were gone. What a relief to see that scowl of discomfort a thing of the past! We’ll continue to go three times a week to keep it all at bay and to work on the other symptoms that are more nuisance than anything else. So many many thanks to all of you from our little community within the “Eye of the Hurricane” who were so quick to respond! Our friendships are priceless. . . . So it took a day and a half for the pain to come back but Rich only needed half the pain med strength as before. Another session with the acupuncturist and the pain is once more gone. The effects should last longer with each session. Impressed with the changes this modality has brought. . . Tomorrow we meet with the next specialist for the next step. Hope we can move forward quickly!
So glad to be able to get back to one of our favorite cabin camping spots with the scouts. Good food, song, stories, games and in the beautiful hills and woods of Westchester. Always a great place to relax by the wood-burning stove while a team of boys cooks and entertain. Tiring but in many ways invigorating as well. Thanks to the boys for a wonderful weekend!
Now we gear up for another consult before the next biopsy to determine the course of treatment. At this point, all signs are leading everyone to believe that it’s a lymphoma again. If one could say that a cancer is a preferable type, this would be the one to want. Hoping to have some answers within the next couple of weeks. If anyone knows of a good acupuncturist, please let us know. Looking for some alternate methods of pain management and acupuncture is highly recommended in a lot of forums.
Edit: Thanks to all who private messaged us info on acupuncturists. Fingers crossed we can get pain relief results that others report for these circumstances.
We’ve been joking with our kids that everything on TV is solved in 43 minutes and there are results before the first commercial break. Ah… if only life were like a TV show! The pathology report is inconclusive but is leaning towards lymphoma. So more tests are on the horizon and the waiting game continues. Hence the frustrations. Now we’re waiting to hear back from our oncologist as to which direction to go next. If it is lymphoma, we hope that there are enough cells for them to use to create a vaccine. This science existed ten years ago but fortunately/unfortunately there were not enough of Rich’s cells to develop the vaccine. This time, we’re hoping that they have improved the process and that whatever they get will be enough. Now that would be worthy of TV!
We’ll soon be coming up on one week since the biopsy that will let us know the direction Rich’s treatment will take. The doctors are sure it’s a malignancy but not what type or stage. Waiting…and not knowing…it’s always the worst.
Later Edit: We realized that for some folks, this is kind of coming in to the middle (or early middle) of our story. Rich was treated for Non-Hodgkin Lymphoma in 2003-2004. As far as we knew, he was coming up on 10 years of remission. And we were looking forward to celebrating that anniversary in April 2014. We also had (have) so many wonderful family moments to celebrate this Spring… in May Nick graduates from Cooper Union, in June is Richard and Noelle’s wedding but first was our daughter giving birth for the second time at the end of January. When we came back from Rochester after welcoming into the world Mark (our Bean) and spending a wonderful week with Jake (our Boober), Rich said that he was always waking up feeling tired and was going to see the doctor. That first visit to our PCP was on February 25th and we’ve been on a remarkable roller coaster ride ever since! The blood work showed a severely low iron count which generally indicates internal bleeding. Thank heavens the doctor also took Rich’s medical history into account and sent us to a gastroenterology/colorectal group who set up first a CT scan on March 4th and then an endoscopy/colonoscopy on March 12th. Both showed lymphatic activity where there should be none and a very suspicious mass in his stomach that we likened to the singing/dancing alien in Spaceballs. From then on, it’s been a strange and yet familiar journey of hurry up and wait!