Out of here!

I was just notified by the intern on call here that I am going home tonight! All of my "plumbing" is now working again, and my oxygen saturation #s are high enough after each little walk that I can go home without the oxygen as long as I take it real easy and breathe deeply. I am glad that we'll be going home before the next snowstorm flies here tomorrow mid-morning, and should end sometime early morning Sat.

Pray that I'll continue breathing better and easier each day, that the kids continue healing up from their colds (JJ came down with the same cough Jilli has had when he woke up this morning - but Jilli is getting better and JJ is only coughing), and that I'll get stronger and heal up quickly so we can get back home to Waldoboro for a few weeks ASAP before coming back here for the trasplant.

I'm packing the laptop up now, and should be back online tomorrow morning sometime in Claremont. Thanks for continuing to stay updated!

emerging from the fog

I am slowly coming forth from the fog that has enveloped me since Monday morning, and continue to have many things a-changin around here - I was taken off my pain pump this morning, I am waiting right now for a doctor to come and remove my chest tube, and they hope to remove my catheter tomorrow. If all of that happens on schedule, there is a slight possibility that I may go home late Thursday. As long as I am out of the hospital for the big game on Sunday, that'll be fine with me!

I took another walk today, and am starting some mobility exercises with the PT lady, too. I was able to talk to my transplant doctor last night, and he said the pathology report came back on the tumor and showed that it was all cancer, and there was no infection of any kind involved - fungal or otherwise. Again, the best part about that is that the entire tumor was removed! I appreciate the emails of encouragement that so many of you have sent my way.

Continue to pray with us that:
1) Lisa would continue to enjoy safety on the roads between Dartmouth & Claremont
2) Jillian would continue to get better from her cold (she has improved since Sunday) and that JJ would continue to enjoy good health
3) my pain would continue to improve, and that I would be able to be out of here sometime Friday

On other side

The good news is that the surgeon was able to get the whole tumor out...the bad news is that he had to remove the upper lobe of my left lung to do so. I will therefore have some permanently reduced lung function. The surgeon was unable to put in the epidural block to help with the pain, which would have been in for 3 days, so they are managing my pain with IV meds right now, which is leaving me in a perpetual fog. The surgery went longer then expected - when the surgeon opened me up and got in there, he said things were "sticky" from previous treatments, so it took longer to work around things then he thought. But, as I said earlier, they got it all!! I've been able to eat fairly well, although less then I usually eat, and I was especially glad when dinner came last night, since I hadn't eaten since Sunday night! I just took my first walk around the floor with Lisa, two nurses, an oxygen tank, and my IV pole, and it went fairly well. Tomorrow I hope to have my chest tube removed. I'm pretty tired right now, but I'll try to write more tomorrow.

On the road again (cue the music!)

Yes, we will be hitting the road again tomorrow to head down to Claremont for my surgery on Monday. I talked with the surgeon on Thu., and he said so long as I did not get worse than I was describing to him, we would go ahead with the surgery. I am the first surgery of the day on Monday, so I have to be at Dartmouth at 6am, meaning we have to leave Claremont at 5:15AM - I haven't been awake to see those digits on the clock in a long time!

Pray with us for:
1) safe travels - not only tomorrow but also for Lisa during the week as she travels back and forth between Dartmouth and Claremont.
2) my continued healing from this cold over the next several days
3) the surgery to go smoothly and be as minimal as possible, and that the recovery would be speedy and uneventful so that we might get to the transplant in a timely manner

I don't know when I will be able to post again, but either I or Lisa will try to post the results of the surgery ASAP, but probably not until at least Tue. Thanks for continuing to check in and pray.

Confirmation

I received word today from Dartmouth that my surgery has indeed been rescheduled to this coming Mon. Jan. 28 (time to be determined on Friday). We will plan to drive down to Claremont on Sun. afternoon to be there for the surgery on Mon. After speaking with my transplant doctor today, I have begun some oral antibiotics, just in case I am dealing with a bacterial infection instead of just the common cold virus. We don't want to see this cold hanging on at the end of the week and have to further postpone the lung surgery. Continue to pray that I am able to kick the cold and that the surgery would be able to take place on Monday.

Whiplash!!!

If there wasn't another change, it would be unusual, but surprises and constant change have become the norm rather than the exception for my life. During the night last night, I developed a cold consisting of a stuffy nose, post-nasal drip, and a "wet" cough, so I called the surgeon, as he had instructed that if ANYTHING (emphasis his) came up this weekend to call him. He said he'd rather postpone the surgery for a week than take a chance operating on my lungs with a possible respiratory issue - be it a cold or something more. Sooo...the surgery has been postponed until next Mon. Jan. 28, and so we are heading back to Maine tonight, and plan (but what does that mean anymore?!?) to return to Claremont next Sun. ahead of the surgery on Mon. the 28th. Wow! The changes continue to pile up, and we are beginning to feel the effects of it.

I will have to check in with the surgeon during the week, and keep an eye on this cold to make sure it's resolving by Wed. or Thu. so the surgery can proceed as now planned. So, you can now pray with us that:
1) the cold would resolve itself quickly
2) there would not be any issues with rescheduling the surgery for Mon. the 28th
3) Lisa and the kids would continue to remain healthy, and we would continue to experience safety on the road during all of these trips
4) that the stress level from all of these changes wouldn't continue to pile up, and that we'd experience a supernatural sense of peace

I had no idea, even this morning, that plans would change this drastically or quickly, but I'm learning the truth of James 4:13-15: "13Now listen, you who say, "Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money." 14Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. 15Instead, you ought to say, "If it is the Lord's will, we will live and do this or that." I am learning to hold all of my plans, however certain they may seem, with an open hand because I am not in control - my sovereign and loving God is! I guess we'll see what tomorrow brings - or even the trip home tonight!

Finally - a plan!

Well, after a long day of meeting with doctors and completing more tests and pre-operative procedures (we began at 10am and didn't walk out of the hospital until 5pm!), we finally have a plan in place! I will be "going under the knife" at 10am on Monday to have a segment of the upper lobe of my left lung removed. If all goes well, I will have minimal loss of lung function, but there's at least a fair chance that the surgeon may have to remove my whole upper lobe, which would reduce my lung capacity by an additional 15% past my already reduced functionality. Even if that ends up being the way things go on Monday, I will still have at least 50% of my pre-cancer lung function, which they tell me is better than many lung cancer patients. The surgeon doing my surgery does these procedures all the time, mainly for lung cancer patients, but he, my transplant doctor, and me all feel like this is the best way to eliminate the tumor and give me the best chance of having a successful stem cell transplant.

I will be an inpatient at Dartmouth from Monday until at least Friday, and will have a chest tube in until sometime Tue. or Wed. while I'm in the hospital. Once I'm discharged, I will recouperate for at least a few days in Claremont before returning to Waldoboro to complete the recovery period. The plan now is for me to begin my stem cell transplant 4 weeks after this surgery, which means it would begin on Mon. Feb. 18, and I would be admitted (yet again!) at Dartmouth for that on Fri. Feb. 22. I will then be an inpatient for about 2 or 2 and 1/2 weeks, and will need to remain in Claremont after discharge for an additional 4-6 weeks.

For right now, please pray with us that:
1) the surgeon would be "at the top of his game" on Mon. morning, and that he would be able to simply and easily remove the tumor without having to take the whole upper lobe.
2) the recovery would be quick and uneventful, and that there would be no infections or other complications.
3) we would continue to rest in the peace that comes from living in the love of Jesus and the absolute sovereignty of our awesome God.

We'll update again as and when there is news to share. Thanks for continuing to check in and keep up with our unexpected journey!

Some news...but no plan yet

Late tonight, I received word from my transplant doctor at Dartmouth the results of my biopsy last week, and it appears the area they were concerned about is a diffuse large B cell Non-Hodgkins Lymphoma tumor. I was glad to hear that they have determined what it is definitively, and that they are in the process of coming up with a game plan.

We are driving down to Claremont tomorrow, and have a 10am appt. on Friday. The 3 possibilities at this point are:
1) Do 1 round of chemotherapy treatment, hoping to reduce the tumor enough to go to transplant with only a 3-4 week delay.
2) Undergo a segmentectomy, a surgery where they would go in and remove the tumor and some surrounding tissue (a segment) in the lung, leaving a chest tube in for a few days. This surgery would possibly be done this Friday, and would require a 2-3 day inpatient stay at Dartmouth, followed by a 2-3 week recovery period, and then the transplant would take place ASAP once I've sufficiently recovered.
3) Go straight to transplant now, counting on the donor's cells to attack this tumor and wipe it and any other "floating" undetectable traces of cancer out of my system.

There are different doctors weighing in on my case who are in favor of all 3 options, there is literature and studies to support any of the 3 options, and the doctor told me tonight that there really isn't a "wrong answer" in my case. If you read this Wed. night or Thu., please pray for wisdom and discernment for each of the doctors giving an opinion, and for me as I weigh their opinions and the eventual recommendation. Please also pray that we would arrive at a game plan sometime Thursday.

There are day to day, even sometimes hour to hour, changes to "my plan" right now, and while it's at least mildly frustrating most of the time and absolutely maddening some of the time, there are at least some times where I have the most unbelievable sense of peace that God is in the details and yes, even the timing of all of this! Continue to pray that these times would increase in my life. It has also helped that this week has been unbelievably busy in the office at church, and I have not really had time to stop and brood over not knowing more than I do...I guess God really does know best what I need, and it was a job to do, not information to process, at least until tonight! Thanks for continuing to "bear our burdens" (Galatians 6:2) with us.

An excerpt...

I was reading our church's annual report the other day, and was struck by something I'd written just a few short weeks ago in my piece of that report, so I thought I'd post it her for you to chew on and hopefully be strengthened and maybe challenged by:

I had no clue of what lay in store for me these last 2 years, as God has walked me through a long and difficult journey, sometimes prodding me on, sometimes holding me close, sometimes picking me up and carrying me, but never leaving or forsaking me, even when He seemed a million miles away. Dark nights, questions without answers, and cycles of pain have come and go, but what could not be seen in the midst of the storm is a bit clearer once the clouds clear (even if the next storm is closing in!) – God is present with us all the time, everywhere, no matter what. This is a statement of theology, or what we say we believe, but it is also a statement of experience for me, as I have seen God move and work in the midst of the most difficult moments of my life. Through it all, I’ve been privileged to remain one of your pastors here at FBC, and the fact that God has used me and some of those dark moments to spur greater faith, love, and spiritual growth in the lives of our church family has truly been a privilege, though I have some ideas about how I would rather have had those lessons impressed upon myself and others!

No news yet

With so many folks asking right now, I thought I'd at least let you know that we have no new definitive news yet to share with you at this point. I will be travelling back down to NH for another appointment at Dartmouth on Friday @ 10am, and that is as far as I know right now. I am still waiting for definitive results on last Thursday's biopsy of a spot in my left lung that seemed to be "hotter" on the PET scan than before. They have not yet determined whether it is an infection, more cancer, or what. Those findings will come to bear on my transplant plans, so at this point we are just waiting for the results, and would ask you to wait patiently and prayerfully with us.
- Psalm 33:20 " We wait in hope for the LORD; he is our help and our shield."
I will post any further update we get as soon as I can.

Another biopsy

On Friday my new transplant doctor called and said he wanted to schedule me for a bronchoscopy to look at a spot in my upper left lung that showed up as a "hot spot" on my PET scan last Monday. He's not sure if it's cancer, a current infection, a recent infection that's still dying off, or even scar tissue, so he wants to go down and "snag a piece to study" - sounds easy for him! Actually, it's a rather minor procedure - in and out the same day, but he does want to have it done at Dartmouth, so we'll be driving down to NH on Wed. for the biopsy to be done on Thu., and hope to return on Fri. or Sat. Since we have not heard anything from the backup donors this past week, in all likelihood, any transplant proceedings will not happen until at least the week of Jan. 21 at the earliest. This will, of course, be impacted by the findings of the biopsy, as well as by "work-up progress" by the 2 backup donors who are now "competing" to become the primary donor.

Here's how you can best pray with us right now:
1) That the bronchoscopy would be smooth, and that the findings would allow the transplant to proceed ASAP.
2) That workups on the 2 "backup" donors would happen in a speedy manner, and that one of them would prove to be just as good a match as the initial donor.
3) Pray for the initial donor, who is probably dealing with some rather weighty medical news that he most likely had no clue about. We'll never know who he is or what the problem was the prevented him from donating, but God does! Pray that any treatment for him will quickly remedy his new medical condition.
4) That we would continue to live in the midst of God's peace, love, and grace through these roller coasters and "change of plans".

What a week!

After driving from Claremont to Dartmouth in a snowstorm for my PET scan on Mon. morning, we decided to hit the road for home after lunch on Mon. afternoon, as that snowstorm had ended, but there was another set to begin sometime on Tue. (New Year's Day) and continue into Wed. when we had originally planned to come home. We had rather clear driving considering the 4-5 inches of new snow that had fallen that morning, and made several stops - for dinner, some groceries, and Lisa wanted to get a few things at the after-Christmas sale at Target (Jilli calls it "circle shopping!).
We were about 5 miles from home, and had just crossed the Waldoboro town line when JJ said "my tummy doesn't feel good", and withing 30 seconds proceeded to vomit all over the car - all over himself, into his cowboy boots, into the bags of groceries, and all over several items packed around him in his seat. We limped home and left the kids in the car while Lisa and I shovelled a path to our door through the 12-14 inches of new snow we'd gotten in Waldoboro! Welcome home! We then spent the next several hours bathing JJ, cleaning up stuff, and getting the worst out of the car. We were up with him until midnight with "repeat performances", and then put him to bed, and he proceeded to "frook out" (Jilli's word for it) several more times through the night. The washer machine was literally running all night. New Year's Day dawned all too early after the busy night, and we tackled cleaning the van and then I drove out to get some "sickie" items at Hannaford. The rest of Tue. was rather uneventful, for which we were glad, and we thought we were back to normal on Wed., so we all went to church last night for dinner, worship team rehearsal, and I went to a meeting. Soon after getting home and going to bed, both Lisa and I began an all-night marathon of "Frooking out" and other stomach issues, and Jilli even joined in the fun sometime around 3am.
Lisa had made plans for a friend to watch the kids while I went to get some more of my pre-transplant tests done, but we cancelled that first thing this morning, as her son was home sick with the same thing. I also called and cancelled my tests for today, and we've spent the rest of the day dozing in the living room, nursing ginger ale and crackers, while the kids have watched videos. They both just went down for naps, and I am going to follow suit shortly, but wanted to blog on this first.

As for transplant related news, we found out yesterday afternoon that my "perfect donor" will not be able to donate due to something found in his medical workup. My 2 backup donors are being contacted today to go for further medical workup, and we'll see how quickly all of this can happen. It is likely, though not certain, at this point, that my transplant date will be postponed, so we have begun a "holding pattern".

Here's how you can best pray with us right now:
1) That we would all get over this stomach bug that is going around our church and community, and quickly!
2) That the 2 backup donors would be able to do their medical workups as soon as possible, and that one of them would prove to be just as good a match as my original donor.
3) That my transplant would not be delayed by this recent turn of events. Too much delay could force us to consider other treatment options.
4) That we would have peace in the midst of all of this, and be strengthened by God's power and overwhelmed by His mercy.

Thanks for continuing to check in, and for your continued prayers, support and encouragement!