Update on Craig and Susanne 8-30-08

I just did the update below for family and thought you'd want to see it too. I appreciate your companionship through this. Love, Susanne Whew, what a couple of weeks this has been. I just fell apart this morning (couldn't stop crying!) from exhaustion and stress and am now rebalancing. Our friend Nik is at the hospital with Craig at the moment covering for me, and Craig is in the process of moving from intensive care to a regular bed on Lerner Tower 4th floor, neurological ward this afternoon. His daughter Michelle left yesterday, but his son David is back from vacation and daughter Leah due in shortly from DC for the weekend. Throughout this year, the kids have tended to connect with their Dad as he's healing and not during the crisis period, so it was such a relief and blessing having Michelle with me through the emergency room and intensive care experience this week and to have her help at home. Nik accompanied us through both hospital experiences as well. Michelle hadn't seen me in action as a patient advocate before so it was a learning experience! They made the mistake of putting us in an ER room with a telephone (cellphones don't work there), so when a doctor from the neuro team hadn't showed up in 3 hours, I called the oncologist and had him get in action. Someone showed up in about 15 minutes! Michelle also got to experience how challenging it is being in a room with a patient and having alarms go off regularly (we took turns being in the room with Craig that first night). We discovered recently that our trusts and wills, etc. were not completed competently, so Michelle's background in insurance, banking, etc. was such a help this week. She worked with our new lawyer and is helping us get our documents and records into order. It was stressful doing the hospital stuff and all that at the same time, but a relief for her father and I to have someone we trust knowledgeable and handling what needed to be done. Thursday evening turned into an impromptu anniversary party for us with a few friends and cookies. Dick Yates sang happy anniversary to us, and we ended the day with just the two of us reading a very moving tribute from a couple about our marriage and our work to benefit other couples. During the evening, Holly Timberlake, a long-time close friend and counselor walked Craig through some visualization and healing exercises which helped Craig connect with joy as well as continue the process he's in of accepting that the journey he's on is one that may take him into the next world. A number of people close to us are walking with us as we experience the limitations of the medical personnel to create miracles. Yesterday was difficult in some ways. Craig seemed a bit depressed and I was exhausted and we both struggled with seeing the outcomes of various assessments of his abilities. Physical therapy, occupational therapy, and speech therapy all were in. The right leg is still minimally responsive and the right arm not at all. They are saying that Craig is experiencing both aphasia and paraphasia. I've been looking those terms up this morning. Aphasia is a loss of the ability to produce and/or comprehend language or the interpretation of language. It is not a result of deficits in sensory, intellect, or psychiatric functioning, nor due to muscle weakness or a cognitive disorder. Depending on the area and extent of the damage, someone suffering from aphasia may be able to speak but not write, or vice versa, or display any of a wide variety of other deficiencies in language comprehension and production, such as being able to sing but not speak. When they tested him, Craig had some difficulty with reading, following directions, etc. He has struggled since this last surgery with time and number difficulties - unable to tell us what year or month it is, unable to count, etc. Yesterday he was back able to count to ten and list the days of the week, so that was improvement. Paraphasia is when one loses the ability of speaking correctly, substitutes one word for another, and changes words and sentences in an inappropriate way. The patient's speech is fluent but is error-prone, e.g. 'treen' instead of 'train'. For instance, Craig has grouped in his head "wife, sister, mother" and sometimes introduces me as his sister. He is frustrated with difficulties in expressing himself at times and expressed concerns about "losing his marbles." We tried our best to reassure him, but he's very unhappy at the limitation. Sylvia and Dave from Craig's office stopped in and he recognized them and was able to converse with them and his cousin Ann and partner Pat stopped in for a visit. He was able to talk to them relatively well and when we talked at the end of the day, he listed the visitors as the happy moments of the day. We met with the surgeon late yesterday afternoon. He said that the team is baffled at Craig's range of symptoms. The right leg problem is not unexpected, but the rest is. Aphasia is common after a stroke, but there is no medical evidence on any of the tests that he had one. It is possible that the seizures two weeks in a row are the culprit, but no one is certain. Craig got a chuckle out of stumping the experts. Craig now has a line in his arm so that he can receive antibiotics for the next 8 weeks. We have decided he should stay at University Hospital for rehab and not go to a facility near our home again. I toured the facility in the afternoon, and UH - Hannah House has a rehab floor that includes skilled nursing, and we hope that's where he will go next week. Then he's close to his doctors and the hospital if there are future events. The rehab hospital last Monday did not respond appropriately or fast enough when he got in trouble. So, this latest crisis is passing, but there is still a long road ahead of us. One day at a time. As Craig stabilizes, updates will slow down. I've done my best to keep everyone informed, but the kids keep reminding me that Craig is my first priority and I can't take on being responsible for everyone's anxiety when they don't hear from me. I have noticed though that it helped me to do the updates. I makes me feel connected to all of you and not so alone. Last night I was just too tired, though. We appreciate all the love, support, and prayers. For those of you who can, visitors or calls to Craig are welcome. I won't know room or phone number until later today, but you can always call the main hospital number, 216-844-1000. Mom F and Mom M - Sending flowers now that he is out of ICU is good (University Hospital, 11100 Euclid Avenue, Cleveland OH 44106). Everyone else, please don't...it's too much. Sending flowers to me works, too. Yellow ones and multicolored mixes make me happy (25241 Chatworth Drive, Euclid, OH 44117). I know plants last longer, but then I have to take care of them. Thanks for your understanding. Love, Susanne

Surgery and Intensive Care 8-27 and 8-28

The surgery for head infection went well. There was a tremendous amount of pus (sorry for the image folks!), but it appears that it was all between the skull and scalp and did not penetrate the brain. Because the bacteria may have been prone to grow in the section of the skull that was removed and replaced during the tumor removal surgeries, they have removed it permanently and inserted a titanium plate in its place. We are still awaiting final "bug" culture results, but it appears likely that this is some type of staph infection. Craig's daugher Michelle and I spent the night in intensive care with Craig.

Craig is still experiencing fever and needed closer monitoring today, so he was left in intensive care. We encouraged a small number of people to visit him briefly today, and that seems to have lifted his spirits. He experienced some challenges swallowing pills during the night, so they would not allow him to eat today (no food since dinner on Tuesday!) until his swallowing was assessed. He was finally approved to eat a slightly modified diet at about 4 p.m. (first meal in 3 days!) Yay!

8-28 was a second day in intensive care. His speech is still being affected by the drugs, but improving. He'll be on high doses of antibiotics for quite awhile. Still some fever.

8-28 is our 9th wedding anniversary. We began the day with saying a prayer for marriage and before I left for a break, I was helping him go to the bathroom. So, from the sublime to the mundane! But alive and together. The day ended with more friends and a mini/impromptu anniversary party complete with chocolate chip cookies and Craig feeling much better. Love, Susanne p.s. Sorry for the delay in news - a little busy and blogger locked out access for a few days.

Emergency 8-25-08

Craig was released to rehab hospital on Saturday. He was readmitted to University Hospital 8-25-08. Head infection, fever, seizures, likely more surgery needed. Very drugged up. We are struggling, but doing our best. Found a couple of things to laugh about today, but a horrid day of tests and procedures. Know you are with us in thoughts and prayers.

Love,

Susanne

Craig in Rehab; Update 8-24-08

Friends: My husband Craig was transferred from University Hospital to Euclid Hospital Rehabilitation center (attached to Euclid Hospital) Saturday, August 23 (http://www.euclidhospital.org/AboutUs/Map/tabid/1035/Default.aspx). 18901 Lakeshore Blvd, Euclid, OH 44119 Craig is struggling some with fatigue and the side effects of the medicines (a little groggy, slight memory impairment), but overall he is in good spirits. He can now move his right thumb, so between that, increased dexterity of his left arm and hand, and using his mouth as a "third hand", he's managing to feed himself for the most part, shave himself with help, etc. The leg is also moving slightly. But, rehab will be an intense process for the next few weeks, both inpatient and then outpatient. Verbally and cognitively he is mostly fine, for which we are very thankful. Timing for calls and visits: During the day, Craig will be doing rehab, resting, and meals. It is best to reach him or visit 5:30 p.m. to 8:30 p.m. in the evenings or various times on the weekend (I don't know his therapy schedule for next weekend yet, but it is lighter than during the week). If you are uncertain about timing, then call him or me (216-383-9930). Calling: The number at Craig's bedside is 216-692-8752. He does not have the ability to put it on "do not disturb" and there is no way to leave messages. Right now if you talk to him he sounds very tired due to some lingering shortness of breath from the surgery. But generally he will welcome hearing from people. Simply ask him whether it's a good time to talk. Visiting: Craig is in room 28 on the second floor of the rehab center. He will be helped and encouraged by visits from people and encouragement with regaining functionality. Feel free to bring him snacks or whatever will cheer him up. He has plenty of more serious reading material and is propping books on the bed table and turning pages left handed. Craig very much believes this guidance from the Baha'i teachings: "We should all visit the sick. When they are in sorrow and suffering, it is a real help and benefit to have a friend come. Happiness is a great healer to those who are ill. In the East it is the custom to call upon the patient often and meet him individually. The people in the East show the utmost kindness and compassion to the sick and suffering. This has greater effect than the remedy itself. You must always have this thought of love and affection when you visit the ailing and afflicted." 'Abdu'l-Baha We are hopeful that he will soon be able to be moved from his bed into a wheelchair. Visitors can then wheel him to the living room, to the view of Lake Erie, out to the healing garden, etc. So, feel free to ask him and staff if you can do this. Please make sure he has a full water bottle first. Seeing Craig over these weeks in the rehab hospital and talking to him will be good for him and for those of you who wish to see him. In October/November as perhaps the tumor grows back and perhaps treatment options are resumed, it may become more difficult. So, I encourage those of you who can to see him and be in touch. There is no estimate yet for how long he will be there, but certainly 2-3 weeks seems likely. Love, Susanne Susanne M. Alexander

Craig Out of Intensive Care

Craig is out of intensive care and in a regular room. He'll probably be discharged to a rehab center in the next 48 hours. Anyone who wants to send a card should send it to the house and I'll deliver it: Craig Farnsworth, 25241 Chatworth Drive, Euclid, OH 44117. Rehab will be vital - he is still only slightly moving his right leg, which the surgeon says is connected to the tumor removal. His right arm is responsive to pinching (no, I didn't do it, but they did!), which is a good sign, but it's not moving at all. This is apparently due to the seizures experienced during surgery damaging the nerves. Cognitively he was more alert today, smiling more, interacting more with staff, etc. Hopefully he'll sleep better out of ICU. We found out today that they only got 90% of the tumor out (it's definitely still cancerous) and the remainder is wrapped around critical blood vessels. Removal would have likely caused a stroke. This also limits treatment options, but doesn't eliminate all of them. We've been given a list of conventional and experimental choices, and Craig has a month of recovery or so for us to consider what to do next, get second opinions, etc. Without treatment (one of the options listed), it will likely grow back within a few months. So, your prayers for us to be guided through this process are appreciated. Love, Susanne

Craig had a calm day in ICU, where he will likely stay at least until tomorrow. There have been no seizures since the surgery ended, thank God! So, they disconnected the EEG brain monitoring device and removed all the wires from his head. They also removed the oxygen tube from his nose and the drainage tube from his head, so he's much more comfortable. Just IV's now in his arms. I saw the incision today. Still the perfectly carved "C" on his head plus a row of staples on an extra incision to relieve pressure on the skin. I sat with him from 10 a.m. to 6 p.m. or so, and he napped off and on and chatted, so he was coherent and relatively alert. The drugs are making him a bit dopey, and the constant interruptions from the staff made it difficult to do his usual serious napping. He's struggling being one-handed and left handed, so I fed him lunch and dinner. He ate every bite. I was able to work with the nurses for them to find a phone Craig could use to call his son David to wish him a happy 30th birthday, but there's no way for others to call him until he's moved out of ICU. He tried to read, but concentration was difficult, and holding the book and turning pages one-handed was too tough to manage today.

The best news of the day is that Craig has full sensory feeling down his right side...if you touch his skin, he can feel it everywhere. The signals from his brain to his arm and leg are generally not happening smoothly (he tries to move things and nothing happens), but he moved his shoulder once, his arm/hand once, and after I massaged his leg and foot, he was able to wiggle his toes a few times. So, definite signs of life. Yay!

I swam this morning at the Y and got some editing and reading done while Craig napped (our book Pure Gold is due in edited version to a Korean publisher in September, so editing it is my hospital sitting around project!). I left after dinner so I could come home to rest. We'll now see what tomorrow brings... Susanne

update on craig

I'm in barely functional mode, so no comments allowed on any grammatically type etc. errors :-). I arrived at the hospital this morning at 5:50 a.m. for morning prayers with Craig, and we headed to the pre-op area at 6 a.m. Craig went into surgery at 7:20 and out about 2 p.m. They finally let me see him in recovery at 4:30. Don't know why you would care about this travelogue, but there it is. A little linear thinking.... So, here's the summary of how it went and how he's doing: - Tumor completely removed - Tumor was tested and is glioblastoma (brain cancer), so good thing surgery was done...it wasn't just cells hit by radiation or something less serious - Bloodd vessels near tumor kept intact - Great care was taken to not impact more motor functions; unfortunately there were a number of seizures during the motor mapping and surgery and at the moment there is limited/no movement on the right side of his body from the shoulder down (face okay). However, the doctors are indicating much of the problem could be swelling and brain trauma from surgery at this point, so it's way too early to know how much functionality will return. Same thing with any discussion of further treatment options. - He was far more alert and responsive from 4:00 on than anyone expected. He asked how my day had gone with the friend who was with me during the day, asked intelligent questions about the surgery, responded to prayer, interacted with the doctors relatively well considering how doped up he was, wanted to know what he looked like! (i couldn't find a mirror), etc. - He is in NICU - Neurological Intensive Care Unit for 24-48 hours or so with brain seizure monitoring, etc. going full time that's as good as it gets... Love, susanne

Tumor Back - Surgery to Remove 8-18

Friends: Craig's tumor has recurred, in almost the exact same place as a year ago. He is in good spirits and the doctors are very optimistic. Surgery is scheduled for the afternoon of 8-18 (today) to remove it. Love, Susanne

Week of Chemo #6 Accomplished!: August 4 to 10

The side-effect symptoms associated with the Temodar, that I mentioned in the previous post, became somewhat more pronounced while taking the drug this week. I was significantly weaker than I have been, along with some difficulty walking. I didn’t go to the office Thursday and Friday due to the weakness, fatigue, and constipation, but I did work a couple hours from home each day.

A couple of times I experienced pre-seizure-type activity. My chest would begin to quiver but I was able to control it with relaxation and touch as I described during the hospital stay for seizure activity in February. So, I didn’t need to take extra medication, which was good.

Susanne did fix a couple of new food items this week sweetened with agave (sweetener from a cactus plant) to appeal to my sweet-tooth without adding sugar into the diet. One was strawberry sorbet and the other was banana-date nut bread.

On Tuesday, we had a new garage door installed to replace the one from 1956 that came with the house and no longer worked.

On Friday, 8-8-08, We thoroughly enjoyed watching the Olympics opening ceremonies….awesome and very dignified. The opening drumming was particularly moving. Those of you who know what our TV is like and that we never watch TV will be amazed that we actually sat and enjoyed the fuzzy performance!

On Saturday, I had a mini-reunion with guys that I was in an Astronomy Club with during high school (during the 1960’s). Turns out that two of them, who are still involved with the club, one currently acting as president, had been recently wondering whatever happened to me. A few days later, I found one of them on FaceBook. He was pretty surprised! Back in the 60’s (the club started in 1963) we were just a bunch of high school guys with telescopes. They have since purchased land and built an observatory, which I’m looking forward to seeing. We were supposed to be stargazing together last night, but rain dampened the event. I was having difficulty walking, but the park had a wheelchair, so Susanne pushed me around. We saw a makeshift indoor planetarium show, visited with the guys a bit, and headed home.

Too Skinny to be Pregnant: July 28 to August 3

We saw the oncologist this week. Earlier in the week, his nurse had called to share a laugh. Someone had inappropriately canceled my next MRI appointment and had put in the notes that the reason for cancellation was patient pregnancy. Now that would make medical history! But, I think my weight is headed the wrong direction to be pregnant. For some unexplainable reason, I’ve lost another 10 pounds over the last month. I’m down to 195 pounds! It’s hard to understand, because I’ve maintained a good appetite, am eating well, and no nausea. Susanne is researching how to bake stuff using Agave to add some extra calories to my diet. Should be tasty!

Dr. Nock, the oncologist, approved moving forward with the next round of chemotherapy, which will start August 4. My blood counts had improved across the board, even achieving normal on the white blood count. The only low one was platelets, but they were just good enough to do chemo. This will be my 6th of 6 prescribed rounds, but since there was a gap between the January and April rounds due to infection surgery, the doctor is leaning towards adding a seventh round so that there are 6 in a row. Following my next MRI, August 18, we will decide if I need to do 1 more round the week of September 1. Obviously, if it has any potential to affect my long-term survival, I’ll do the extra round…but I’d sure like to be finished with treatment.

We did a detailed review of the known side effects of the chemotherapy drug (Temodar) and found that a significant number of them I am now experiencing to some extent:

- Joint and muscle pain

- Weakness

- Reduced coordination (both walking and writing)

- Constipation

- Some speech impairment

- Fatigue

- Abnormal gait

- Reduced concentration

In the Tuesday Gathering Place support group people often speak of “Chemo-brain”…I think I am now experiencing that, too, unfortunately. I’m still doing well managing our finances, but a couple of payments this month went to the wrong places. I struggle when I have to cope with too many details at once. Things that used to be simple for me to grasp are sometimes overwhelming. Some of the fuzzy thinking might be due to the steroids as well—it’s hard to tell for sure. But that’s just how it is for right now. (And, it’s a good thing Susanne edits my posts before you see them!)

I’m ramping down on the steroids now. At the beginning, they seemed to help reduce the numbness in my foot and leg and help me walk better. I actually experienced some pain and discomfort instead of numbness for a few days. They don’t seem to be helping me now, though, and slightly elevated blood pressure and blood sugar are indicators that there may be too many side effects from them going on. So, time to stop. The good news is that I have had no seizure activity since July 17.

On the complimentary medicine side, I had a deep-tissue massage and then soak in a hot bath with Dead Sea Salts. Felt really good.

My son, David, and grandson, Aidan, picked me up at the office for lunch on Friday. It was fun to introduce them to some of my colleagues, have lunch, and then go back home. Aidan had his first time by himself with Susanne (Nana) in the play room while Dave and I ran an errand. With all that has occurred since Aidan’s birth in March 2007, we haven’t babysat for him as we normally would. We hope to do it more now.

We scheduled a hot air balloon ride for Saturday, August 2…intended to be our first and the fulfillment of a long-time dream for both Susanne and me. Unfortunately, it was too windy. We will now pray that my health and the weather don’t interfere with our new date in September.

We had a delightful lunch get-together with my cousin Bill Farnsworth, his wife Karen, and son Chuck along with my Aunt Jean. Bill and family were in town, from Boston, to visit his mother, who is in a nursing home in Oberlin. (We forgot to take photos, though!)