Wife, Suzy diagnosed with multiple myeloma in December. I will be spending part of the tax season, 3 to 4 weeks starting March 5th in Little Rock, AR as her primary caregiver. I have made arrangements to have work forwarded to me in LR, I’ll be doing tax work from there. In Springfield for the last 17 days of tax season.
Thursday 5/10 Suzy had sever leg pain last night. I called the Myeloma doctor on call and got instructions to double up on her pain killer. That seemed to work. MIRT called first thing this morning and changed Suzy’s appointment with Dr. Waheet to 9:15. News was good and we bargain for two extra weeks off. We don’t have to be back in Little Rock until June 18. Waheet thinks the leg pain is the result of her robust bone marrow. We had to go on to INF4 for fluids and a deto shot. We got back to the apartment by 3:00 pm, finished packing and we are on the road. I am writing this from Marion, IL. We should be home by Friday afternoon. Thanks for all your prayers.
Wednesday 5/9 Suzy still needed fluids today, as we struggled through with new RN in training at INF4 (5 hour visit). WBC fell back to 2.64 but we got the exit appointment with Dr. Waheed. Suzy is adamant but not coming back for the second transplant but at least we are going to ask for maximum amount of time off before she does her second. We still need to be at INF4 at 9:00 am tomorrow and our Doctor appointment is at 11:30.
Tuesday 5/8 Suzy got fluids today at INF4 because she is still having a hard time swallowing (consequently not eating much). She said her legs quit hurting in the middle of the night. WBC are just under the discharge level (2.74). We are online to be discharged by Friday if the numbers hold tomorrow. We’re so close, they actually pulled her line before we left the clinic today.
Monday 5/7 Suzy and I had an extended visit with our APN at the Infusion Clinic. We are trying figure out what is causing her leg pain. It better but still there. APN had a conference with Dr. Waheed and they issued another prescription which will combat neuropathy. They feel her leg pain is related to neuropathy which is a common side effect to melphalan chemo. Her WBC is still below par (1.88) but coming up slow. They feel it will be up to discharge level later in the week if we can solve the leg pain problem.
Sunday 5/6 I spent the night at the hospital, Suzy says I slept like a log. Doctor was in this morning and we’re going home, well back to the apartment. Suzy’s feeling a little better; actually drank all of her chocolate milk? Janice and Kirby got here early and we will spend some time before they start back to Ft Worth. We left the hospital after Suzy ate at least part of her lunch. Will be back at INF4 at 11 am tomorrow
Saturday 5/5 Suzy is much better today. Took the push off and we thought they might release her. Weekend hospitalist didn’t want to commit so she staying another day even after Suzy tried to bribe him with a bottle of wine. Janice spent the day with Suzy while Kirby and I visited a couple of museums. They always amuse each other. We got back in time to watch the 138th running of the Derby. Janice picked one & two but unfortunately there is no OTB in AR. We’re hoping to go home tomorrow.
Friday 5/4 Suzy is a little over sedated and disoriented this morning. She thought Wyatt was here last night. Physical Therapist was here and now it is getting time for the painkiller again. The Hospitalist stopped in with a Pharmacist; after the examination they decided to put her on a push for the painkiller. She pushes a button and administers the painkiller in a small dose as she needs it instead of a large dose every four hours. It is mid afternoon now and she is sleeping, she actually ate a little of her lunch. She is still on all of the other IVs.
Thursday 5/3 Suzy seemed better this morning, we were running a little late, so we didn’t go for those leg xrays. We went straight to INF4, we were doing the normal routine, they had four different IVs running including her fluids. I felt she was much better as she had me go out to the pop machine in waiting area for a Sprite Zero. All of a sudden, her narcotic painkiller wore off and she again got excruciating pain in her legs. They ordered her a shot of morphine again from pharmacy but this time the doctor in charge at Infusion Clinic Four decided to admit her to the Hospital. This was mainly to monitor her painkillers, get her legs xrayed and try and figure out what’s causing the pain. So we went from the Rockefeller Cancer Center to UAMS's main hospital. Suzy is in room F722 on a 30 bed Myeloma Unit. How cool is that, I bet there is not another Myeloma Unit that large in the US. They are all private room, very large and comfortable. I stayed until about 8, but I needed to get back to write this blog and straighten up the apartment because Janice and Kirby are coming up from Ft Worth, TX tomorrow. I guess I will take my laptop to the hospital tomorrow. Keep Suzy in your prayers, she is pretty disoriented presently from the painkillers.
Wednesday 5/2 Suzy’s mouth sores are better but her legs are still hurting bad. She got the usual today and the 24 hour bag to wear home because she isn’t eating. She got heavier dose of morphine to help with the leg pain. MD ordered some leg xrays but we’re going to do that tomorrow; six hours at INF4 was all she could stand today. WBC were .04 so maybe she has bottom out. Let’s hope.
Tuesday 5/1 Suzy’s mouth and legs are very sore. She went up to INF4 in a wheel chair and came out down in one. She got two separate shots of morphine, fluids there and a 24 hour bag to wear home. They also gave her platelets today and small infusers with her medicines because she just cannot eat or hold anything down. WBC count was .02 and I filled a prescription for narcotic painkiller patch to help her tolerate. I thought yesterday was the worse but today was really bad too
Monday 4/30 Suzy was so sick today, I was glad to get her to INF4 today. In addition to the same routine, she got a shot of morphine and her first ever unit of blood. Nothing came quick we were there almost seven hours. Her WBC was .06 and her hemogloblin was under minimum of 12. She was better by the time we left but the sores in her mouth are still hurting and making it very difficult to eat. Her weight is really down from not eating. I hope this is the worse.
Sunday 4/29 We got in early to INF4, went through the norm of the last 4 visits of getting fluids and her medicines via IV. Blood work showed her numbers resumed dropping (WBC was .17). RN said they will probably stay at that level 2 or 3 days before she starts to recover from the melphalan. We had three infusers to take home and pharmacy was slow getting them ready. It was making Suzy paranoid as the woman next to us in Pod7 was very sick, Suzy thought pneumonia. They brought over a cardiologist who was trying to admit her. We moved to their break area and waited 45 minutes for our take home.
Saturday 4/28 It wasn’t quite as long at INF4 today as we got back by 3:30 pm. Got called back; however, as our RN had overlooked Suzy’s low potassium. I had to pickup a couple infusers to hookup at the apartment. Some of Suzy’s numbers retreated a little, WBC was 2.1, that’s not unusual they told us. Weather has been great but Suzy feeling too sick to take advantage. Our Sunday visit got changed to 9:00 am.
Friday 4/27 Suzy was given all her meds today via IV because she just could not hold anything down. All her numbers continue to drop, WBC (white blood cell count) was 1.6 which makes her neutropenic. That means wearing mask to and from the clinic and not going out in public. It was a long five hour day at INF4. I went to a nearby Chinese restaurant for takeout and she was able to hold down some wonton soup. TV was fixed so that picked up her spirits some. We’re hoping the worse has past.
Thursday 4/26 Our daily appointment at INF4 is 11:00 am. She got fluids again after blood work and this time a 24 hour bag to wear home at about 2:00 pm. There was some anti-nauseate with the fluids. Suzy is really tired along the upset stomach. This is normal they say as her numbers go down from the melphalan. We are on day 3 after the transplant and they say it should bottom out at about day 10 or 12 before starting to recover. Maybe we’ll have TV for the weekend.
Wednesday 4/25 Suzy is vomiting in the morning and evening. Fluids after blood work, numbers going down slowly, two infuser to bring home. Not too pleasant and no TV.
Tuesday 4/24 Suzy is still very nauseated, APN added some stronger anti-nausea ingredients to her infuser cocktail. We didn’t have to be to Inf4 until eleven this morning for her blood work. She got some fluids and had her dexamethasone (an another anti-neusea medicine) via the IV because her stomach is so upset. We got back to the apartment early (2 PM) to deal with the latest crises, no cable or internet. This posting maybe late they are tell us it will be until Friday before a technician can come out. I hijacked someone’s wireless but no TV.
Monday 4/23 Suzy had a rough night and she is still only eating crackers and milk shakes. She got transplanted 4.5 million of her own stem cells about noon and she rested for a couple hours before she could leave. All went well but she is still pretty sick from the melphalan. She’s wearing a infuser bag of drugs to ward off the side affects. She still has 69½ million stem cells left for future transplants. Now it is the process of watching her numbers go down and then recover. They told us most people take 3 weeks.
Sunday 4/22 The melphalan visit to InF4 took three hours. The time went fast, though as we talked to a 43 year old physican’s wife who had been there almost continually since November. She came in with 149 lesions, one of which had caused her a broken jaw. Her parents were her caregivers this week. They were all from Denton, TX. That’s where Janice’s daughter, Emily, had went to School (North Texas State). We had actually been there with Janice and Kirby for dinner w/Emily. The father had actually worked in Springfield temporarily to move his company’s Bomag Division to Illinois. Again, small world. We’re scheduled for the stem cell transplant tomorrow at 9:30 am.
Saturday 4/21 We were back on familiar turf today, Inf4, for blood work and to have the line bandage 
changed. Inf4 has about 14 quad units and a half dozen private rooms. Each quad unit has a RN supervisor. Today the RN told us we talked funny like the other couple in her unit. A lady and her son, caregiver, were fellow Buckeyes albeit, Wooster, The son had lived formerly in Springfield, so we a great visit. We anticipate seeing them again because her transplant is on Monday also. We messed around downtown for a while and then went to Whole Foods for some groceries. At about 4:00 pm we got online and found some floor seats had opened up for Tom Petty, so we snagged them. (Suzy knows concerts) Dinner at Eat Doe’s Place and Suzy a shirt at the Concert made for a great evening.
Friday 4/20 Suzy and I met w/Dr Waheed at 9:30 and had her line placed at 11:00 am but it was 4:00 pm before we left the hospital. We, however, were happy because of her results. Dr Waheed said she had been responding to the treatment like a 20 year old. From the MRIs results she said that some of Suzy’s bone lesions were gone and the rest had shrunk. So the treatment plan is to get the big dose of melphalan on Sunday and the stem cell transplant on Monday. Tomorrow is just blood tests at 10:00 am. There is Tom Petty Concert in town on Saturday night, so Suzy is going to indulge me and celebrate if we can fine decent seats. It’s raining tonight so we got a pizza and were staying in.
Thursday 4/19 Suzy had a painful bone marrow biopsy in the morning at 8:30. She was done about 11 am and we found a Whole Hog Café near our apartment. I brought back carry out for lunch. We were back at the Cancer Center at 1:00 pm for a second MRI in two days. We were done by three and went out west of town to new shopping area called the Promonade. Suzy was happy to find one of her favorite stores, Anthologies, and I found some bargins at the Nike Store. We went back to the Cancer Center at 6:00 pm for the monthly Q&A and finally got to meet Bart Barlogie, the director of MIRT. The main speaker was Dr Waheed, Suzy’s doctor who talked about a new clinical program that about to start. Barlogie didn’t say much, but he did introduce an eye doctor from Qatar who had come to Little Rock for treatment.
Wednesday 4/18 We had to deal with the morning rush hour traffic from this distance but it only took about 20 minutes to get UAMS. Got through the MRI and blood tests by noon. Suzy was happy they only took 12 vials this time. We had walked around and shopped for a while in Hillcrest but were back at the apartment by 1:30. Suzy couldn’t eat before the PET scan so I braved it out with her. I got a little worked done in the afternoon while Suzy napped. We were back at the Hospital by 4:30 and were done at 7 pm. We went back to Hillcrest for a nice dinner at the Acadia.
Tuesday 4/17 Left home a little after 6:00 am, we split the driving and arrived at 4:00 pm. Late Monday evening we received a call from the Little Rock Church telling us that a two bedroom apartment came available so we upgraded. We love it, it is 500% better than the Guesthouse and cheaper. The LR Church does this as a ministry for cancer patients. It is about six miles from the Cancer Center instead of one and no shuttle but Suzy says it feels more like home. We got unpacked and put away, I filed a couple of extensions, found a little Italian Restaurant about a block away and did some grocery shopping for breakfast. Suzy has an MRI at 8:30 am, some blood tests 11, a Pet Scan at 5 pm, busy day tomorrow.
Friday 3/30 We had to return our keys to the front desk over at the hotel but we got on the road almost on time 5:15 am. After breakfast in Jackson, TN around 9, Suzy tried to drive for awhile. She drove about 60 miles and I took back over, She is still really weak. We stopped in Bowling Green, KY at Corvette Museum. But then only stopped onc other time for fuel. Got home about 6 pm. Thanks to all of your thoughts and prayers we’re home safe.
Thursday 3/29 We’re at INF4 to draw blood and to have one infuser of antibody. APN ordered some blood but by then it was time to see Dr Waheed, so they sent us to her office and with the plan to come back and receive the blood and then have the line out. Dr Waheed was really impressed with the about of Stem Cell Suzy was able to collect and also overruled the need for blood. We got our schedule, treatment plan and release. Then we went back to INF4 to have line removed. At 4:30 went out for an early dinner to celebrate(first time Suzy been out in public for over two weeks). We got back to the apartment at about 6:00 pm and started packing.
Wednesday 3/28 Back at Cell Therapy Aphaeresis at 7:00 am for the second collection. Suzy spent an hour on the machine we were back at the apartment by 8:30. They called us later in the day to say the total collection was 75 million. That’s enough for 3 transplants. One of the nurses at CTA gave us the name of hair dresser who helps cancer patients so Suzy took the big step since it was starting to come out anyway. She’s still beautiful. We’ll get her line out tomorrow, see the doctor and leave for home bright and early Friday.
Tuesday 3/27 It was a longer wait then usual for the blood report to come. They had decided against giving fluids or antibodies in an anticipation of the WBC going over 2.0. It took an hour and half of waiting but came in at 7.66. Suzy had suffered terrible bone pain the night before but we were elated when they sent us to get the line changed over to a single larger port. Then to Cell Therapy Aphaeresis to sign a consent to collect stem cells. Our APN had informed us we would return there at 7:00 am to start collection but they were arrived at 2:30 pm they were empty and asked us if we wanted to due some collection today. Well yes, knowing when collection was done we’d visit our myeloma physician and start home for a few weeks. So we collected today and are scheduled back early in the morning. We are so thankful because we me so many patients here who started before Suzy and still are not collecting yet.
Monday 3/26 Suzy got an antibody infuser and breathing treatment while we were waiting for the blood report to come back. Her WBC was up to 1.67 so maybe just maybe we might harvest tomorrow or Wednesday. Suzy is upbeat although she having a lot of aches and pains. They told us this is common when your while blood cells come back and go to work. We’re also counting our blessings as we met a school teacher in the INF4 waiting area, who was only 43 and quite an athlete just diagnosed from the Tampa area. Weather is still great and afternoon session was only 30 minutes.
Sunday 3/25 Suzy got fluids and a antibody infuser at INF4 this morning but we were out in just over 2 hours. Her WBC climbed to 0.49, that was encouraging. When it reaches 2.0 they will start the harvesting of stem cells. After that we’ll be coming home for a while. We had a pleasant surprise at the afternoon session, they had us coming in at 4 pm for another hour of antibody drip but decided her increased CRP level may not be due to her infection and postponed it. The weather was great today, but we’re hoping this fourth week is our last one in Little Rock for awhile.
Saturday 3/24 Longest day yet at INF4, five hours. On the weekends INF4 is not exclusively MIRT, they serve other cancer patients so it’s a longer wait. Couple that with a bag of fluids and a breathing treatment and it adds up. They had a mixup on her blood report and first said Suzy would need a transfusion but they had the someone else’s report. Her WBC actually started to rise 0.17. Not much but going in the right direction. Janice played the caregiver and took Suzy to the afternoon session, while Kirby and I watched hoops. I’ll have to hookup her antibody infuser bag again tonight but everybody is celebrating cause the Buckeyes are going to the final four. Kirby and I found a great Brazilian restaurant in the Hillcrest district for some take out after the game. Suzy’s feeling after a little better, after a shower and Janice drying her hair, life is good.
Friday 3/23 Suzy’s WBC dropped more 0.1 and Bp was low. She’s caught a virus but they said that’s not uncommon. She got fluids but didn’t have to carry a bag home. They sent a bottle of antibody infuser that I had to start this evening for the virus, so I used by line training. Janice and Kirby arrived and that has pick up her spirits.
Thursday 3/22 Suzy’s WBC (white blood cells) bottom out this morning at .2 and her a Bp was still around 90/60. They gave her a bag of fluids during the morning stop at INF4 and then another 24hr one to wear home. Four hours in the morning but only 15 minutes this afternoon. She still feeling pretty low but her spirits are up because our friends Janice and Kirby are driving up from Ft Worth, TX for a weekend visit tomorrow. Nice but cool today but it’s raining again tonight.
Wednesday 3/21 Suzy had another low blood pressure (Bp) reading this morning. They gave her another bag of fluids to carry around for 24. She still very very tried and nauseated. I got more line training, for a just in case infuser if her body temperature goes over 101. Hope I don’t need to. We were in and out of the afternoon appointment in 30 minutes. It rained all night and day in Little Rock, over 3 inches but my Ridgeline looks clean.
Tuesday 3/20 INF4 ran fine today. We’re scheduled at 9 and 4:45 through Saturday for the stem cell growth hormone shots in the belly. We out by little after 11 am this morning and just after 5 in the afternoon. Suzy’s much better today. She got a renew on the small infuser bottle but got the big fluid bag off this afternoon. She says to thank everyone for all the cards she getting.
Monday 3/19 We had another four hour day at INF4 in the morning. Suzy got a small infuser bottle of some stuff to fight the terrible side effect from the chemo she is experiencing on one of her lines. Went back at 6 pm for her first round of the stem cell growth agent. She was feeling so bad that her blood pressure went down to 61/49. Nurse thinks she was dehydrated, gave her bag to wear for 24 hours with fluids on the 2nd of her 3 lines. Also prescription for some special pain killer that’s not suppose to interfere with the other drugs. This was her worse day so far and she’s two or three days from what’s suppose to be the worse.
Sunday 3/18 We had a 9:00 am appointment at the INF4 (MIRT’s 4th Floor Infusion Clinic). It was just to draw blood and Suzy’s daily shot of Lovenox. Got back to the apartment at noon and she’s so sick and exhausted that we just laid around and watched basketball the rest of the day. Carryout for lunch & dinner.
Saturday 3/17 4 long hours at infusion clinic but Suzy’s happy to be detached from the bag. Chemo is really making her tired. She rested most of the afternoon and I then talked her into taking a walk. We went down to the Capital grounds. Nice weather but a quiet St Paddy’s day.
Friday 3/16 One stop at Blood draw, one long stop at the infusion clinic, four trips to the pharmacy. Suzy is tried today, rested a lot. I walked over to the hotel twice to get the mail but I think we’re in for the evening. We’ll celebrate tomorrow when she gets the bag off.
Thursday 3/15 Blood work early again, H&H starting to drop and Suzy’s sodium was low. Had to change some of her 64oz of liquid from water to Gatorade. Lovenox, bag change and we’re halfway through Suzy’s bag stint. We got out of the infusion clinic in time to go CLV (central line venous) training at 12:30 pm; how to maintain and change the lines and do a home infusion. Went to the Q&A, Bart didn’t show up but Frits van Rhee did, the long session with about 70 myeloma patients and caregivers reinforced the feeling that we’re in the right place.
Wednesday 3/14 Blood drawn at 10am, counts remain good. In and out of infusion by noon, got one bag replaced and her daily shot of Lovenox to prevent clotting. Suzy went to her knitting circle and I played golf. We went to the Myeloma Support group at five till almost 7 pm. It’s always interesting and they feed you too. Tomorrow evening we go to a question and answer session w/Bart Barlogie, the Director of MIRT.
Tuesday 3/13 Suzy got a velcade treatment today, same stuff she did 2 cycles of in Springfield. She’s carrying around two pumps for two infusion bags of various chemo agents that will last 4 days. One is called the red devil. She is assigned a APN (Advance Practice Nurse) to monitor her infusions. We got training from her on what to do if the batteries run low or the alarm sounds on the pumps. We got all this done in 2 hours at the infusion clinic. Suzy was happy to receive flowers today. It was nice to get them now as she will not be able to have them when blood counts drop.(probably next week) Sunny and 85º today. They have us in 11am tomorrow so Suzy can attend a knitting class at 1:30pm, people are vary accommodating here.
Monday 3/12 Walked the neighborhood this morning. Blood tests looked good, only 2 hours at the infusion clinic. Tomorrow will be big. Suzy gets hooked up to a bag for 4 days. Went back to Flying Fish, line long but not out the door. I had a dozen oysters & a tilapia fillet, Suzy had the tilapia fillet, worth the wait. Sunny and 80º.
Sunday 3/11 We went to a church today that made FCC seem small. They have big churches in Little Rock. Spent 2½ hours at the UAMS Winthrop P.Rockefeller Cancer Institute’s infusion clinic. Suzy got a test does of Melphalan (17mg). They’re making sure her system will can handle it. Only thing scheduled for tomorrow is her daily blood work. Rained all day.
Saturday 3/10 Flushed the port and changed the bandage. We got a break only 3 hours at MIRT. Suzy got her hair cut short pic to follow. Weather sunny and 70º. Went downtown for some seafood at the Flying Fish but the line was out the door so we ended up at the Bosocos micro brewing. Food was good.
Friday 3/9 Suzy got her first round of chemo but it took 4+ hours. Then she got her line placed and we have appointment tomorrow to get it flushed. We were at MIRT until about 5 pm. Long day. Got back to our new home and the carpet finally dry and in time to watch the Witt feed. Go Tigers they won and made the elite eight.
Thursday 3/8 MIRT called early, postponed start of Chemo until Saturday, so no need for blood work or the port today. Apartment opened up so we took advantage of the day off moved our stuff, went to mall, HD dealership, Krogers & Walmart. MIRT called back to say they have opening for the Chemo on Friday after all. Busy day tomorrow.
Wednesday 3/7 Long day, Out of biopsy of bone lesion by 10:30 am, got Suzy a muffin and a Starbucks, Got to MIRT (Myeloma Institute for Research and Therapy) by 11:30. At first we’re trying to decide if we were going to have a big lunch and skip dinner or vice versa but by the time we’re done with the conference with Dr Waheed, staff, scheduler and insurance person we had just enough time to make a 5:00 pm support group meeting. We had a late dinner and we’re beat.
Tuesday 3/6 Check-in, Suzy had more blood drawn at 9:30. Her 11:00 am bone biopsy was rescheduled for 7:00 am tomorrow, along with meetling her doctor, Sarah Waheed at noon. Since we had the rest of the Tuesday off we checked out Juanitas downtown for lunch. I played golf and Suzy went shopping. When I got back she was starting her new hobby of knitting. Get your order in.
Monday Morning 3/5, Got started a little late (5:30 am) Stopped at Walmart for a case of Black & Tan. Started in the snow, got to little Rock 5:30 pm counting a 70 minute delay about 20 on the Springfield side of Indianapolis, Little Rock sunny and 65º. I drove 500, Suzy 220. All well although our apartment wasn’t ready. Staying in a suite for a couple of days until an apartment opens up. Suzy has blood work and a bone biopsy starting at 9:15 in the morning.