January
Tuesday, January 27
We went to see the oncologist today, and he is very pleased with Keith's progress. His lungs seem to be better, and his bloodwork is steadily improving. He was impressed with all the scans that Keith has lined up for tomorrow. He said that Moffitt can get insurance companies to do more just because of who they are, and if they can't get it covered, they will write it off. I still can't believe that he is having another PET scan tomorrow and we haven't had any issues from the insurance. He still thinks that Keith shouldn't have the surgery, but we all agreed that the surgeon will have a much better picture after tomorrow.
The scans tomorrow will be all day! He starts with MRIs in the morning, and ends with the PET scan at 4 pm. We won't know anything regarding the results until our appointment with the surgeon next Friday. Hopefully then he can give us more answers.
So, please pray that the tumor has really shrunk down, but especially that they can have a decision that all doctors will agree on as far as surgery or none. I got this Facebook message from my friend Cathy Eidson Brown, "Be encouraged! Praying for a cancer-free tumor that looks like a raisin! Or, ideally, GONE! Praying & singing 'Great is Thy Faithfulness' as you visit Moffitt on Friday." I love that...a tumor that looks like a raisin! Let's ask God for that!!
Tuesday, January 26
We are in Dallas today, celebrating Josh's 24th birthday. It has been quite a whirlwind week (remember, a week ago today was my "normal" day....sheesh!). We flew in to Dallas yesterday, and will fly home tomorrow. It has been a great day, though, and I am so glad we made the effort to be with both of our kids on their birthdays. We spent the entire day with Josh, and then took him out for a very expensive steak!
I wanted to remind you that Keith is having the MRI and PET scans at Moffitt on Friday. My prayer is that the tumor will have continued to shrink to the point that they can tell conclusively about the cancer or lack thereof in the tumor. Of course, if it has shrunk to the point that it is below the 3 cm mark, that would be great, too. If we are going through this surgery, I want to be sure that everyone is in agreement that it is absolutely the best course of action!
We see our doctor on Thursday, travel to Moffitt on Friday, and then go back to Moffitt next Friday to meet with the surgeon. Big decisions this week and next...thank you for your prayers!
Wednesday, January 20
My enjoyment of normalcy was shattered today, when, at 3:00 this morning our phone rang, and we found out that one of our closest friends in Birmingham had collapsed with a massive heart attack. After struggling all day, he passed away this afternoon. John and Kathy Jones have been friends of ours since we first moved to Birmingham in 1993. We have had many, many great times together, and they were the type of friends that would walk through fire for us, and we would have for them.
They spent a week with us at the first of January, and how we treasure that time now. John's health had been failing in recent years, but we did not expect this. He was only 48 years old.
So, tomorrow we will head to Birmingham to be with our friends and mourn the death of this one that we loved so dearly.
Please pray for us as we travel. Keith will be flying back on Saturday, and I will drive back on Sunday. All the Moffitt tests have been moved to next Friday.
Hug your loved ones close. It is amazing how quickly things can change.
Tuesday, January 19
Today has been a normal day. I got up, took the dog out, went in and worked till noon, ate a sandwich, then worked some more. I had to go to the dentist this afternoon, and on my way back I called Keith. He said, "I'm so behind...I've had this meeting and that meeting, and I have the men's thing tonight." He wasn't complaining, just venting a little about being so busy. But...he sounded strong and back where he needs and wants to be.
I remember one day when he was going through treatment looking at him laying on the couch so pale and sick and thinking..."Will we ever have another normal day?" Well, we had one today, and I paused and thanked God for it.
Monday, January 18
Our Moffitt doctor called on Saturday morning and gave us more information on the tumor board meeting. He is a real no-nonsense guy, so I think it’s probably better for me to highlight what he said by point:
- The board felt like Keith would probably be a candidate for surgery in the future, but they need for him to be on Coumidin for at least 3 months for the blood clot, they want his lungs to clear up, and they want more information about the tumor.
- They said the stuff in his lungs in inflammation from the Bleomyicin, not cancer or infection.
- They want more testing to see just how involved the Vena Cava is with the tumor, thus the tests next Friday.
- He said they could not get the current PET scan to load for the board, although it would load for him to view in the clinic. So the tumor board was unable to view the PET. He said he might order another PET scan for next Friday as well. (Hmmm…we’ll see how THAT goes with the insurance!)
- He wants the biopsy slides from the orchiectomy. The board believes that Keith’s tumor is pure Seminoma, but they need those slides to confirm that. Apparently that makes a difference in how they approach the surgery.
- In conclusion, he said he wasn’t going to commit to anything until he got the results of these tests. I assume that after the tests he will schedule an appointment with us to go over them. He keeps referring to the surgery as a "big" surgery. When a surgeon says that, you have to assume that what he means is that it is a "risky" surgery. That's what makes us nervous.
So, if he has the surgery, it wouldn’t be until at least March. I really want us to all pray that the tumor continues to shrink. If it could shrink down to smaller than 3 cm, they would be less likely to operate (it’s at 5 cm now). Also, I think they will do another PET scan before they do the surgery, and if it is small enough, they might be able to tell conclusively if there is or is not any cancer remaining.
Friday, January 15
We didn't get to talk to the doctor today, but his nurse called this afternoon to say that they had received our messages and the doctor should be calling us either over the weekend or on Monday. We received some paperwork today regarding the testing next Friday, and it looks like they are planning on doing several tests. The main question we have for him is if the tumor board is recommending surgery at some point, what is the criteria that we need to meet to reach that point? Is it just for the lungs to clear up, or is it dependent on what these tests reveal? I guess we'll know more on Monday!
Now that we have several doctors in the mix, it's hard to keep the appointments straight. Next week he has bloodwork one day, the lung doctor one day, the oncologists one day, and then the Moffitt testing one day...and I think several of those stack up together on the same day! Boy, being sick is a full time job!!
Thursday, January 14
Our celebration of Bethany's birthday was wonderful! We had a great day yesterday, and even had a glass of lemonade at Toomer's Corner! For those who don't know, that's quite an Auburn tradition!
Today was a day of traveling, and we had rehearsals tonight. The only news that I have from the cancer front is that we had a message from Moffitt saying that Keith has a MRI scheduled at Moffitt on Friday, Jan 22. I am hoping he can actually talk to the doctor tomorrow and find out a little clearer picture as to what he is planning.
I enjoyed the comments that we got from several of you regarding my assessment that the Moffitt Tumor board agreed with me. This was my favorite, from our friend, Paul Strozier, "OK – I’m thinking we could have just told the Tumor Board that LeeAnn is the Holy Spirit and saved them some meeting time. You could just go ahead and diagnose everything else and save that battery of tests, you know!" That sounds good to me!! I'm glad people are finally starting to realize.....!!
Tuesday, January 12
We are in Auburn, Alabama today, here to celebrate Bethany's 20th birthday tomorrow. It was a high value to Keith, after the events of the past year, that we be with both of our kids on their birthdays this year. Southwest helped with low fares, so we are doing a bit of a whirlwind trip.
In the midst of our travel today, Keith had a message from the Moffitt doctor. He said that the tumor board had first of all determined that the inflammation in Keith's lungs is from the chemo, and is not cancer. He said that they feel like they are going to "do something with him" as far as surgery, but they want to use the time that his lungs are healing to do more tests. There is a Moffitt lady that is supposed to call to schedule what sounds like a large battery of tests. SO...pretty much sounds like that the tumor board agreed with me :-) ....let's wait and let Keith get stronger and then make the decision about surgery. The only difference is that they are pretty convinced that the surgery will be happening at some point in the future, whereas I'm claiming that when we get to that point, the tumor will have shrunk down to nothing! I am certainly not opposed to the surgery, I just want to be sure Keith is strong enough for it.
So, bottom line is that the tumor board seemed to recommend surgery, but only after Keith's lungs have healed. I'm not really sure what all the new tests are for, but I figure more information can be nothing but good. Keith is going to try and contact them tomorrow, so I'll let you know if we know any more.
Well...the plot thickens!! Not really, but it is interesting to compare doctor's appointments. We met with our oncologist today and his opinion is that the PET scan is accurate and there is no more cancer. He said that a surgeon will always be biased toward surgery, because then you know for sure that it is gone and there are no more concerns. He seemed quite concerned with the location of the tumor, and he thinks the tumor board will be, too.
He and I decided (Keith just listened...he didn't agree or disagree!) that the best course of action may be the one that will automatically happen because of Keith's lungs. Our doctor thinks that they will not do the surgery until they can get Keith's lungs back where they need to be. That will probably take several months. What I would like is for us to be able to hold off on the surgery for several months, and then do a scan again before we do it. Dr. Berry said that the tumor is still shrinking, and there is no evidence of cancer, so there is no reason to rush the surgery. That is my gut feeling, too. (And during those months we can have all of you guys praying that the tumor shrinks to nothing and no surgery is needed!!)
Of course, everything may change tomorrow when we hear the recommendation of the tumor board. This is always interesting...I'm just so glad Keith is feeling better and stronger. We'll tackle whatever is ahead!
Saturday, January 9
I am adding a note to my post from last night. We found out after I had written last night that our dear friend, Jackie Decker, lost her fight with cancer yesterday. Jackie is the wife of one of our staff members at Woodland. She and Keith took several chemo treatments together at the cancer center, and I was always amazed at how she sought to minister to those around her, even when she was really feeling rough. Her happy smile and excited greetings when she saw you were genuine and blessed.
This is especially piercing given the journey that we have been on. Please pray for Mike and their children as they go through this. He has been a strong helpmate and caregiver throughout her fight that began last May.
I really hate this insidious disease, but I believe with all my heart that God knows each of our lifespans, and has a plan for each day. Jackie fulfilled that plan, even when hit with some pretty horrifying circumstances. I think today she is being rewarded for that.
Friday, January 8
Wow...the trip to Moffitt today was unbelievable! It was wonderful, yet overwhelming! First of all, the facility is very impressive. I didn't realize that people come from all over the world to this cancer hospital. It runs like a well-oiled machine! We were there for 3 HOURS...yet we went from step to step before we finally met with the doctor. Come to find out, this doctor is very highly respected and an expert in the area of testicular cancer. He took the time today to review all of Keith's tests and scans, and came into our appointment with a knowledge of Keith's case.
To summarize the 3 HOUR appointment...he showed us the CT scan of the tumor and where it is located. He is not totally convinced that there is no cancer remaining in the tumor. He doesn't suspect that there is, but he can't say with certainty that the cancer is gone. He is going to take Keith's case to the "tumor board" on Monday for review. They will look at all of the factors (tumor location, PET scans, etc.) and make a recommendation as to whether or not the tumor should be removed.
If we decide to have the tumor removed, it is a major surgery...I'm talking Big Boy Surgery, where he would be cut from under his breastbone to just below his navel. The doctor told him that it would be a bit challenging to get to the location of the tumor. Keith said, "You know it's serious surgery when the doctor says he's going to pull out your bowels and lay them aside in order to get to the tumor!!" The recovery time would be about six weeks. The problem with the surgery is that the tumor is still attached to the Veina Cava (sp) and kidney veins, and it is very close to his aorta. The doctor says, however, that they do this surgery all the time.
If they decide not to recommend the surgery, we would just watch the tumor, and would do scans and check it about every three months. The concern is that since the cancer has already moved through Keith's bloodstream that it could happen again if there is any cancer left in the tumor.
So, it is really a Catch 22 situation...the surgery would eradicate the tumor and hopefully any cancer, but it is radical surgery. The waiting and watching holds a risk for the cancer to come back, and plus the tumor is still taking up a good amount of space in his abdomen and pressing on some of his veins.
Needless to say, we were so overwhelmed with all of this information that when we got home we just crashed! It was rainy and cold here, so we came home and took a nap. I think that also had something to do with staying up til 1 am for the Alabama game! Roll tide! We have had a chance to talk about it all a little this evening, which has been good.
The good news is that we feel wonderfully confident with this doctor, and blessed to be within driving distance of a cancer center like this. We really need you all to pray for this tumor board and their decision on Monday. Please ask God to guide them as they are making the decision and recommendation that could affect the rest of Keith's life. We will have information on this on Tuesday, and if they schedule the surgery, it would probably be in a couple of months,
Thank you for your prayers....we will keep you posted!
Thursday, January 7
Keith saw the lung specialist today, and the CT scan showed that he has a great deal of inflammation in his lungs. The doctor said that it could be one of 3 things : 1. cancer, which he doesn't suspect, since Keith has just finished chemo, and the PET scan did not show anything there; 2. infection, but he doesn't think it is that, since Keith is not sick; or 3. inflammation or scar tissue, which is most likely what it is, and can be caused by the Bleomyicin. He has put Keith back on Prednizone and wants to check him again in 2 weeks. The good news is that if it is inflammation, the Prednizone should take care of it.
We go to Moffitt tomorrow and plan on asking the doctor there about the lung thing. We have all of the scans and biopsies packed up and ready to go. I'm really looking forward to this next step. Moffitt is such a highly respected cacer center, and I'm glad they will be reviewing Keith's case.
Wednesday, January 6
Not much news today. This is the only day this week that Keith hasn't had to go to the doctor. He goes back to the lung doctor tomorrow for review of the lung CT scan, and then to Moffitt on Friday. As soon as we know something about the scan I will post it tomorrow. His appointment is not until 4 pm, so it will be late afternoon.
Bethany left to go back to Auburn today, so it is once again just Keith and I in the house. First time since December 19! We miss her, but she was anxious to get back to school. There is potential for snow tomorrow in Auburn!!
Tuesday, January 5
Keith had the scan done today. Boy, what a difference the new year makes...suddenly our deductibles and coinsurance are back in the picture! I was sort of used to that 100% coverage that we had from July on last year! Something tells me at the rate we are going, we will hit that $3000 out of pocket pretty soon!
Several of you have asked whether the doctor thinks the lung problems are permanent. At the last visit he told us that the lung issues should get better with time, but if there was a weakness in his heart muscle, then that would be permanent. That's why we were very relieved that the Muga scan came out okay. Of course, I think they have to actually figure out what;s wrong with the lung before they can make a judgment about how to treat it.
Bethany is doing better today. She is planning on traveling back to Auburn tomorrow, ahead of a potential snowstorm scheduled for Thursday there.
Monday, January 4
Just when I think we are finished, something new comes along. He went back to the lung doctor today for a routine follow up after he had the Muga scan. The scan showed his heart function is fine, but the doctor was still concerned about Keith's shortness of breath. He took a chest xray and saw some things that concerned him. Again, the concern is not that this is cancer, but that it is some sort of inflammation or scar tissue caused by the chemo drugs. SO...we have another CT scan scheduled for tomorrow. This one is a non contrast just for his lungs.
We are in the process of gathering up all the scans and biopsies to take with us to Moffitt on Friday. He's had so many done, it's wonder he doesn't glow when the lights are out! I'm looking forward to meeting this doctor. Friday will just be a consultation, then he will review all of Keith's scans and let us know his recommendation as far as surgery.
Bethany is still home, and this morning woke up with a 103 fever! I took her to the doctor and they said she has strep. So now whe's on an antibiotic, and is bound and determined to head back to Auburn on Wednesday.
Please pray about Keith's lung situation, and especially that they can tell from the scan what we are dealing with.
