I am the caregiver of my husband, Mike. We are both 33 and we have a son who is 10 and a daughter who is 4. Here is our story.
First let me start by saying Mike is a veteran and we were dealing with the VA. Mike had a CT done in December of 2004. When his doctor called us in to go over the results, her exact words were "It can not be cancer, because with the condition of you lungs, you would already be dead." Well, we took that as good news. She then said, let's do a PET scan just to rule it out. We thought ok. We have to check out everything so we can find out what is really wrong. She referred us to Cincinnati, OH to the VA hospital to have the test done. Well, to our surprise, the large spot on Mike's right lung showed uptake on the scan. They say to us that the doctor will be in touch. Then we are 15 minutes from the hospital on our way home when his cell phone rings and it is the pulmonologist. They want to meet with us immediately. Well, it was a Friday afternoon and since we were 15 minutes away, the doctor did not want to wait for us to come back to the hospital. Mike said tell me over the phone so we don't have to wait until next week and worry. So they tell us as I am driving down the freeway that it is cancer and they want him to come next week to have a biopsy done. We go the next week for the biopsy. It comes back positive. We go the next week to meet with the surgeon, whose nurse tells us we need to apply for social security. Boy what a shocker! They schedule surgery for the following week. At this point, we are stage I. Boy were they moving fast. We expected for them to resection his lung, take the cancer out and be done. They told us that when they got in there, they would take some more samples and do quick freeze biopsies in the operating room before continuing the resection. They took Mike to surgery and I looked at my watch and said they should just be getting started. I no more got the words out of my mouth and the surgeon walks into the waiting room. First he says our name, only it did not sound like Miller. Still to this day I am certain that he said the wrong name. I did not even recognize him, remember I had only seen him twice. Finally my father-in-law says over here. The doctor stands across a waiting room full of people, me, Mike's parents, our 9 year old son and 3 year old daughter and two of our friends, and tells us that it has spread to his lower right lobe and that he saw a spot on the chest wall, but no biopsy was taken, and that the spots in the left lung are suspected to be cancer too. Still standing across the room and in front of my children, he continues to tell us there is nothing that can be done and that he has probably 6 months, and at best a year to live. How do you process this? My son is asking me questions, like mom, is dad going to die? how do you answer that? The doctor tells us they are moving him to ICU (procedure) and then he will be moved onto the floor in the morning. When we go back to see Mike, we realize that he does not know that they could not do surgery, so I have to tell him. Next impossible task. Well, we talk to him and he says the doctors don't know these things. It is not in their hands, but in God's hands. I am sure this is the right attitude to have, but that was really hard for me to hear. Mike recovers and goes home three days later. At this point we are stage IV.
At this point I decide that maybe the VA is not the best place for us to get treatment. I call the cancer center near our house and try to schedule an appointment. The lady on the phone is telling me that they have no appointments until June. I am freaking out, because we can't wait that long. We have to do something right now. While we are on the phone scheduling the appointment for June, she says oh wait. Now there is an appointment on March 9th. The day after his follow-up in Cincinnati. This was my first realization that God was working with us and he was leading us to the right doctor. We go see the oncologist who is honest and wants to begin chemo the next week. I ask if we can wait until the following week, because he wanted to start chemo on Mike's 33rd birthday. Me thinking it could be the last, I did not want to spend it getting chemo. So he schedules Mike to have a port put in on March 16th and he has his first chemo on March 18th. After four rounds of chemo, Mike has a CT and the main tumor has shrunk over 60% and none of the other spots are showing. Praise God! He wants Mike to have four more rounds and then if the response continues on this path then he wants him to see a surgeon. Well, he gets four more rounds of chemo, (Forgot to tell you what, Taxotere and Carboplatin) and he adds Avastin to the treatment. He does a PET scan at the end of those and sees the same response. The tumor has continued to shrink with no other spots showing.
He referred us to a surgeon who did a wedge resection on November 11, 2005. He biopsied other spots showing in Mike's lung and all came back negative. He also did a biopsy of the spot on his chest wall, again negative. At this point, the surgeon says that Mike is cancer free. The oncologist and surgeon are deciding if he should have more chemo chemo just to make sure, but as of right now, there is no cancer. We see the oncologist on February 3 and we will find out then. We are not sure what happens next, but at this point, we feel like whatever it takes to beat this stuff. I know that we are years away from a cure or remission and we have lots more treatments and scans to go before we are there. I just hope that we could be the start of cured Lung Cancer patients.
Well, sorry this is long, but it is where we started in December 2004 until now.
Bless you all,
Husband Mike (35)
Jan 2005 Diag. NSCLC Stage 1
Feb. 2005 Diag. NSCLC Stage 4 Inoperable Met. to chest wall
March 2005 Chemo Carboplatin/Taxotere (Every three weeks)
May 2005 Neulasta After Chemo
June 2005 Added Avastin
June 2005 Tumor Shrunk 60% and CT does not show any mets.
August 2005 Completed 8 rounds.
September 2005 PET Scan - only one tumor showing. Scheduled appointment with surgeon in Pittsburgh.
October 2005 Consult with surgeon. All scans not received from OSU. Scheduled an appointment in three weeks.
Scheduled surgery for Nov. 11, 2005.
November 2005 Wedge resection. Took several biopsies and all were negative including chest wall. Also did chemo Perfusion Therapy with Cistplatin directly to the sight. Now cancer free. May do more chemo just to be sure.
December 2005 Oncologist wants to wait until he is healed from surgery and do a new CT and then decide about chemo.
2/27/06 Still NED
5/24/06 Port removed
10/17/06 Drained over 2 liters of fluid.
11/1/06 It's back. Start radiation & Chemo 11/9/06.
1/2/07 Pleurex Catheter placed
1/17/07 Alimta & Avastin Every 3 Weeks
3/2/07 Pleurx Catheter Removed