Monthly Archives: May 2013
We’ve been home from UAB one week and this stupid PICC line isn’t working properly and I retract my previous rave review of this thing. Last Friday it came out of his arm and we had to go to the Emergency Room to have another one put in. Of course, this involved all sorts of drama with the Home Health Nurse trying to get someone at UAB to send orders to our local hospital; mind you, Friday was the beginning of Memorial Day weekend. Bless her heart, she persevered and got it done and we were only at the ER three hours, a record short visit for us.
But the big problem is that the container of antibiotics is not completely emptying over the 24 hr. period. I will not give all the details of this ongoing issue but just say that tomorrow the UAB Pharmacy is sending us a little portable pump that should fix the problem (famous last words).
In the meantime, we are concerned that Gorman cannot have the Avastin infusions until this infection is gone. We have surgery hanging over our heads if the infection doesn’t respond to the antibiotics. We have a check-up with Dr. Markert next Wednesday and, despite the fact that Gorman hasn’t been getting the full dose of antibiotics, we are hoping he will have improved enough to stop the talk of more surgery.
We are both so tired. Gorman can’t sleep on his right side because of the incision in his head and they have told him not to sleep on his left side because the PICC line is located there. So now he tries to sleep on his back all night. I challenge anyone to do that and get a good night’s sleep. If he’s not sleeping well, I’m not sleeping well. Plus the combination of infection and antibiotics causes him to feel crummy. The good news is that it’s 6:30 and time for a glass of wine.
Last Thursday Gorman’s incision began leaking. I nearly had a heart attack. After several hours of emails back and forth with Dr. Markert’s nurse practitioner, she said to go to the ER but she knew Dr. Markert would want us at UAB. So after five hours at the local ER, they transferred us to UAB. We politely refused the ambulance and drove to Birmingham, arriving at 3:30 Fri. morning. They drew blood and did blood cultures to begin looking for infection. Those cultures take several days to reveal anything so they began IVs of antibiotics and there we were over the weekend. His white count was ok so we were very hopeful. Dr. Markert talked about surgery to go in and “clean out” the area but Gorman had had an Avastin infusion two weeks ago and Avastin inhibits the body’s ability to heal so that pretty much ruled out surgery, fine by us. The Infectious Disease docs were called in. We were so hoping there would be no infection but on Monday the cultures showed some type of staph infection. This was quite a blow. Poor Gorman was so glum; both his arms were black and blue from blown out IVs and numerous blood draws. The decision was made to change his antibiotics, have a PICC (Peripherally Inserted Central Catheter) line put in and send him home on antibiotics. This rig is amazing: a tube was inserted in his upper arm and the tip ends in a large blood vessel just above the heart. On the outside of his arm is a tube running to a little round ball that administers the drug to his system 24/7. I have learned how to change out the medication ball every day and we will have a home health nurse come once a week.
While in the hospital, he had bad headaches but now they’re under control with Advil and Lortab if necessary. More good news: he had an MRI Monday night and it looked good and clear; what a relief. So we were discharged last night and have to return in two weeks for check-up. The antibiotics will continue for six weeks.
After five days in the hospital, Gorman was so funny. We were driving to the drug store and he marveled at how green all the trees were and the beautiful sunset and fluffy white clouds. He said, “This must be what it feels like when someone gets out of prison”. We stayed in the hotel in Birmingham last night, both slept sooo soundly it was heaven, then headed home today.
Please pray that these antibiotics will rid Gorman of this infection. We all hear about the drug-resistant bugs out there and I’m trying not to think about that. Once again, our Lord sustained us through this ordeal. When things would get really bad, I would climb up on the bed with him, where he was covered in his prayer quilt, and we would hold on to each other and pray together and the peace would come.
During our walk along this rocky road, Gorman and I have been amazed and blessed by all the wonderful friends who have cared for us, prayed for us and reached out to us in so many special ways but this most recent act of love was truly amazing. A dear friend was inspired to have this painting done for us. It is so beautiful in and of itself but this is what she wrote on the accompanying card:
“If colors could convey the essence of you as you walk together along our earthly path, my vision is, amber tones – your unconditional, fervent love and devotion for each other, golden hues symbolizing your faith, emerald colors framing your strength, crimson tones representing your courage, amethyst shades reflecting your hope, periwinkle hues- your exemplary spirit, fireflies on the periphery representing friends whose hearts reach out and lift up prayers for you, and, of course, the light surrounding you is God”. I began to cry again just typing this.
For anyone who is reading this, I do hope that if you get to that rough patch in your road you will have this same comfort and blessing of good friends. God does provide. He doesn’t always give us everything we want or ask for but He blesses us abundantly, in ways we never imagined.
Gorman has his first Avastin infusion last week and it was pretty easy. He will receive it every two weeks at Southern Cancer Center, just a 25 minute drive. They also gave him in the drip a dose of anti-nausea medicine and Prednizone. The nurse warned him he may have trouble sleeping because of the Prednizone and, sure enough, he was wide awake at 4:00 the next morning and other mornings after that. This was quite a change because we both usually sleep 9 to 10 hours every night. I’ve tried to think if this has been caused by depression but honestly, I don’t think it is because we’re not depressed. Living with stage four brain cancer is just exhausting and takes a toll emotionally. Consequently we do sleep, sometimes helped by a Tylonol PM. Anyway, I hope he won’t have to get that steroid every time.
Gorman’s next MRI is July 8 and we will continue to get those done at UAB in Birmingham. Folks have asked why we don’t have them done locally now that he’s not in a clinical trial. Apparently it’s best to use the same machine every time. If we changed to a local hospital, we’d have to get copies of all his previous scans and start from scratch with a new radiologist. We want to stay linked in with Dr. Nabors at UAB, plus going every two months is a piece of cake compared to what we have been doing. Plus we know all the good restaurants in Birmingham now.
It appears that there really aren’t any clinical trials going on right now that would be of much use to Gorman. A lot of them involve Temodar, which we’ve already tried. Some are testing combinations of Avastin and other drugs but Dr. Nabors says nothing is showing much promise right now. There are some trials out there that are pretty much throwing the kitchen sink at the cancer, combining lots of different stuff but the patient’s quality of life comes into play there. Gorman says he doesn’t care to spend every day sick as a dog with no guarantee that it will help. Of course new trials pop up all the time and Dr. Nabors knows we’d like to hear of any possibilities, thus a good reason to stay under his care.
We’ve been at our condo at Orange Beach for several days. It had been several months since we had been there; we had almost forgotten how peaceful and relaxing it is. The sunsets were beautiful and we ate lots of good seafood. Now we’re back in Fairhope for a while.
Sorry my previous first sentence made no sense. It was Gorman’s head that was swollen, obviously. This is what happens when I don’t proofread.
Gorman woke up Thursday morning to find the right side of his so swollen that it was alarming. He had a mild headache and felt awful. He has inadvertently slept on his right side, on the incision, during the night but I couldn’t believe that could cause so much swelling a month after the surgery. So I debated whom to call. It’s really hard to get anyone on the phone at UAB, plus they are almost five hours away. Note to self: if there is another surgery, let’s have it done locally. Since Mike Meshad was our oncologist from the beginning and he will be administering the Avastin, I called his office. They said he was off on Fridays but a nurse would call me back. When she did I asked if he should start on another round of prednizone for the swelling and she said, “No mam, he needs to be examined. You should take him to the emergency room now” so that’s what we did.
The doctor at Thomas Hospital said there were three possibilities: infection and pus building up in the brain; bleeding in the brain or leaking of cerebrospinal fluid. They did a CAT scan, blood work, conferred with the neurologist on call at UAB and determined that it was the cerebrospinal fluid leak, which was the best possible news. He suspected it was caused by sleeping on that side of his head. Apparently this will heal itself and is no cause for worry. Of course, it took six and one-half grueling, frightening hours to get to this.
When we walked out of the hospital at 10:00 pm, it was raining and had turned cold so we went home and made grilled cheese sandwiches, which we ate in my study with the gas log fireplace going. Also sipped a little wine, while over and over thanking God that Gorman was okay.
Saturday morning Gorman woke up feeling much better; so much so that we followed our original plan and went to a private gardens tour in Mobile. He did get tired but enjoyed being outside on a beautiful and sunny day.
Today his head is still swollen but not as much so I guess it’s getting better and he feels good again. He starts Avastin on Tuesday and we’re ready to get that going.
Gorman and I had a wonderful time in Pennsylvania, where we were able to experience Spring all over again. It was so nice to get away and focus on something other than his illness. Of course, it’s always there, like a little black cloud, hovering nearby but at least for eight days we were able to push it pretty far away.
Now we’re home and it’s been a month since his surgery so we’re ready to take the next bite out of the elephant. He will start Avastin next week, don’t know the details yet. Dr. Nabors talked with the folks at MDAnderson and the trials they have going right now would not be of much use in our situation. There are lots of clinical trials out there combining Avastin with other drugs but so far nothing is showing much good. There are two types of chemo that Dr. Nabors will add to Gorman’s treatment if there is another recurrence; let’s try not to think about that. Also some targeted radiation can be used if need be.
The good news is that Gorman feels good which is amazing considering the surgery he’s had. We are hopeful that the Avastin will give him some more time and who knows, maybe a new super drug will pop up as a result of all these clinical trials. Emotionally we’re a little shaky but know our Lord will continue to give us strength for today. I have yet another new slogan: “You can’t change the past but you can ruin the present by worrying over the future”. How true!